The Routledge Handbook of Health Communication

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HANDBOOK OF HEALTH COMMUNICATION

HANDBOOK OF HEALTH COMMUNICATION

Edited by

Teresa L. Thompson University of Dayton

Alicia M. Dorsey Texas A & M University

Katherine I. Miller Texas A & M University

Roxanne Parrott Pennsylvania State University

2003

LAWRENCE ERLBAUM ASSOCIATES, PUBLISHERS Mahwah, New Jersey London

Acquisitions Editor: Editorial Assistant: Cover Design: Textbook Production Manager: Full-Service Compositor: Text and Cover Printer:

Linda Bathgate Karin Bates Kathryn Houghtaling Lacey Paul Smolenski TechBooks Hamilton Printing Company

This book was typeset in 10.5/12 pt. Times, Italic, Bold, and Bold Italic. The heads were typeset in Americana, Americana Italic, and Americana Bold.

C 2003 by Lawrence Erlbaum Associates, Inc. Copyright
All rights reserved. No part of this book may be reproduced in any form, by photostat, microfilm, retrieval system, or any other means, without prior written permission of the publisher.

Lawrence Erlbaum Associates, Inc., Publishers 10 Industrial Avenue Mahwah, New Jersey 07430

Library of Congress Cataloging-in-Publication Data Handbook of health communication / edited by Teresa L. Thompson, Alicia Dorsey, Katherine I. Miller. p. ; cm. Includes bibliographical references and index. ISBN 0-8058-3857-0 (case : alk. paper)—ISBN 0-8058-3858-9 (pbk. : alk. paper) 1. Communication in medicine—Handbooks, manuals, etc. 2. Physician and patient—Handbooks, manuals, etc. I. Thompson, Teresa L. II. Dorsey, Alicia. III. Miller, Katherine (Katherine I.) [DNLM: 1. Communication. 2. Physician-Patient Relations. 3. Delivery of Health Care—organization & administration. 4. Health Promotion—methods. 5. Patient Education—methods. W 62 H236 2003] R118.H26 2003 613—dc21 Books published by Lawrence Erlbaum Associates are printed on acid-free paper, and their bindings are chosen for strength and durability. Printed in the United States of America 10 9 8 7 6 5 4 3 2 1

2002015809

To Alyse and Tony Teresa Thompson To Leroy and Adam for their love and patience Alicia Dorsey To Jim and Kalena Katherine Miller In memory of Amanda Kundrat Roxanne Parrott

Contents

Preface

1

Introduction Teresa L. Thompson

xiii 1

PART I: INTRODUCTION (edited and with introduction by Katherine I. Miller) 2

Illness Narratives and the Social Construction of Health Barbara F. Sharf and Marsha L. Vanderford

3

Theorizing About Health Communication Austin S. Babrow and Marifran Mattson

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4

Communication in Medical Encounters: An Ecological Perspective Richard L. Street, Jr.

63

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PART II: PROVIDER-PATIENT INTERACTION ISSUES (edited and with introduction by Teresa L. Thompson) 5

Provider and Patient Communication Skills Training Donald J. Cegala and Stefne Lenzmeier Broz

6

The Nature of the Therapeutic Relationship and the Assessment of Its Discourse in Routine Medical Visits Debra Roter and Kelly S. McNeilis

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CONTENTS

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Outcomes of Patient-Provider Interaction Judith Belle Brown, Moira Stewart, and Bridget L. Ryan

8

Medical Disclosure and Decision-Making: Excavating the Complexities of Physician-Patient Information Exchange Catherine M. Gillotti

163

Children, Older Adults, and Women: Impact on Provider-Patient Interaction Jon F. Nussbaum, Sandra Ragan, and Bryan Whaley

183

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PART III: SOCIAL AND COMMUNITY HEALTH ISSUES (edited and with introduction by Alicia M. Dorsey)

10 The State of the Art and the State of the Science of Community Organizing

207

James W. Dearing

11 The Continuing Challenge of Community Health Risk Management and Communication Clifford W. Scherer and Napoleon K. Juanillo Jr.

221

12 Working along the Margins: Developing Community-Based Strategies for Communicating about Health with Marginalized Groups Leigh Arden Ford and Gust A. Yep

13 Social Support, Social Networks, and Health

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263

Terrance L. Albrecht and Daena J. Goldsmith

14 Everyday Interpersonal Communication and Health

285

Rebecca J. Welch Cline

PART IV: ORGANIZATIONAL ISSUES (edited and with introduction by Katherine I. Miller) 15 Organizational Forms and the Provision of Health Care

319

John C. Lammers, Ashley P. Duggan, and Joshua B. Barbour

16 Stress and Social Support in Health Care Organizations

347

Julie Apker and Eileen Berlin Ray

17 Groups and Teams in Health Care: Communication and Effectiveness Marshall Scott Poole and Kevin Real

369

CONTENTS

18 Organizational Rhetoric and Healthcare Policymaking

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Charles Conrad and Holly Gene McIntush

19 Working Well: Communicating Individual and Collective Wellness Initiatives Patricia Geist-Martin, Kim Horsley, and Angele Farrell

423

PART V: MEDIA ISSUES (edited and with introduction by Roxanne Parrott) 20 Using Media Campaigns for Health Promotion

449

Charles Salmon and Charles Atkin

21 Looking Toward the Future: Health Message Design Strategies

473

Lisa Murray-Johnson and Kim Witte

22 Using Computers to Narrowcast Health Messages: The Role of Audience Segmentation, Targeting, and Tailoring in Health Promotion Rajiv N. Rimal and A. Dawn Adkins

23 Telemedicine: Expanding Health Care into Virtual Environments

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515

Jeanine Warisse Turner

24 Health as Profit: Public Relations in Health Communication

537

Jeffrey K. Springston and Ruth Ann Weaver Lariscy

25 Popular Media and Health: Images, Effects, and Institutions

557

Kimberly N. Kline

26 Accessing, Understanding, and Applying Health Communication Messages: The Challenge of Health Literacy Jay M. Bernhardt and Kenzie A. Cameron

583

PART VI: LESSONS AND CHALLENGES FROM THE FIELD (edited and with introduction by Alicia M. Dorsey) 27 Opportunities for Health Communication Scholarship to Shape Public Health Policy and Practice: Examples from the National Cancer Institute Gary L. Kreps

28 Lessons Learned from the Field on Prevention and Health Campaigns Timothy Edgar, Vicki Freimuth, and Sharon Lee Hammond

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625

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CONTENTS

29 Lessons Learned about Academic and Public Health Collaborations in the Conduct of Community-Based Research Roxanne Parrott and Carol Steiner

637

30 Ethics in Health Communication Interventions

651

Nurit Guttman Author Index

681

Subject Index

729

Preface

The field of health communication has developed tremendously within the last 25 years. Prior to that time, there was only a scattering of research published in widely dispersed publication outlets. There are now two journals devoted exclusively to the topic, but hundreds of other medical and social science journals publish related research on a regular basis. Lawrence Erlbaum Associates (LEA) began publishing the journal Health Communication in 1989. Although some of the early submissions left much to be desired and the first few issues were filled just in time for publication, that situation had changed drastically within a year or two. We now find a plethora of high quality submissions and have such a backlog of acceptances (even with only a 15% acceptance rate) that LEA decided to, for the third time, increase the size of the journal in 2001. A few years ago, a competing outlet, Journal of Health Communication, began publication. The competition has in no way, however, diminished submissions to either journal. The reason for this is because there is much good work being conducted in the field. Indeed, there is so much good work being conducted that there is now a need for a comprehensive outlet that summarizes the research in the area. That is the task of the current volume, Handbook of Health Communication. This volume covers many of the important areas of research in the field of health communication. Each chapter, written by a noted scholar or scholars in the relevant area, 1) reviews the theory and research in the area, both within the United States and internationally, 2) critiques that research and the methods that were used, 3) provides suggestions for future research on the topic (a research agenda for the 21st century); and 4) discusses practical implications of the line of research. The authors are from the fields of communication, medicine, and public health as well as government agencies and private health consulting arenas. In addition to covering specific content in each substantive area, the authors were asked to address their topics with the following issues in mind, although not every issue is relevant to every chapter: a) How does this area of research relate to patients’ health and well being or the health and well being of society at large?

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PREFACE b) How has this area of research advanced our understanding of the process of human communication? c) How do contemporary societal developments such as managed care impact this issue?

The book begins with an overview chapter, followed by five key sections. Each section begins with a brief introduction. The first section includes a chapter on the social construction of health and illness and chapters on theoretical perspectives used within the field of health communication. This is followed by a section that addresses issues in provider-patient interaction, such as studying provider-patient communication, communication skills and training, disclosure issues, outcomes of provider-patient interaction, and special populations. The following section focuses upon broader social and community health concerns, including prevention, risk perceptions, disenfranchisement, community organizing, and social support networks and health. The next section addresses such organizational issues as health care teams, social support for health care providers, the structure of health care organizations, and the rhetoric of health care organizations. The last large section focuses upon the media by addressing such topics as health information in the media, health campaigns, health PR (included because of the increasing numbers of health communication students going to work in health PR), health literacy, health message strategies, and information technology issues, including telemedicine. The book culminates with a discussion of “lessons from the field” and broader health policy issues. The authors of these chapters have extensive experience with efforts to apply health communication, with some having assumed leadership roles in national agencies to guide practice endeavors. The chapters talk about which findings are actually useful and applicable for practitioners and where research in the area should move. Ethical concerns are also raised. This book is targeted towards the fields of health communication, public health, nursing, and social/behavioral aspects of medicine. It is primarily addressed toward graduate student and faculty markets. It should be of interest to researchers, health care providers, health communication consultants and practitioners, and policy makers. We hope that these audiences find the book helpful and useful. It can be used as both a text and as a reference book. In addition to extending thanks to all of the authors of the various chapters, the editors would like to thank Linda Bathgate of LEA, who first suggested this volume, and Michie Shaw of TechBooks. They are responsible for bringing this book to fruition. Teresa Thompson Alicia Dorsey Katherine Miller Roxanne Parrott (all editors contributed equally to this work)

HANDBOOK OF HEALTH COMMUNICATION

1 Introduction Teresa L. Thompson University of Dayton

What can one say about an area of study that simultaneously allows one to look at the creation of shared meaning and at the impact of messages on health and health care delivery? Although those of us who study communicative processes would argue that all communication is inherently interesting, researchers who examine the impact of communication on health and health care delivery are privileged to focus upon processes of fundamental human import. After all, health issues are of concern to most of us throughout our lives. It may then be surprising that it took communication researchers some time to turn their attention to health issues. The Health Communication Division of the International Communication Association was founded in just 1975, and a division of the same name was made part of the National Communication Association (the largest association of people who study communicative processes) in 1985. This does not mean, of course, that health communication processes were not being examined prior to 1975. The study of health communication had already begun but was sporadic and scattered, with the exception of the early work of Barbara Korsch and colleagues (Korsch, Freeman, & Negrete, 1971; Korsch, Gozzi, & Francis, 1968; Korsch & Negrete, 1972). In addition, whereas some of the first studies were conducted by researchers whose primary interest was communication, more were done by those with interests in medicine, nursing, or, occasionally, social science areas other than communication. For instance, in Costello’s (1977) review of the area of health communication, only five of the published articles he cited had appeared in communication outlets, and three of those focused on therapeutic communication rather than health communication per se. Costello concluded that little of the existing research had been conducted by those within the field of communication, and Cassata (1977) echoed this theme. By the time Thompson wrote her 1984 review of communication in the health and social service professions, 105 out of the 325 works

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she cited had appeared in communication publications and conferences. As the present volume makes clear, the study of health communication has since burgeoned, both in the field of communication and more broadly in academia and the professions. Some of the growth in research can be attributed to increased funding options for the study of health communication phenomena, but the appearance of outlets for the publication of health communication research is also a contributing cause. In 1989, Lawrence Erlbaum Associates launched the first journal devoted specifically to the study of communication in health care, appropriately named Health Communication, and 7 years later came the inauguration of the Journal of Health Communication. Both journals have provided opportunities for the dissemination of research on communication and health issues and have encouraged researchers to investigate this fascinating area. As scholars have been ignited by the interesting studies published by their colleagues, they have added to the research, causing it to grow exponentially. Numerous other social science and medical journals have also reflected the increase in interest, and it is no longer possible to succinctly survey research on health communication. Indeed, the chapters in this volume make clear the impossibility of covering the entire area of health communication in the same manner as in early reviews (see, e.g., Cassata, 1977, 1980; Costello, 1977; Kreps, 1988; Pettegrew, 1988; Thompson, 1984). Even Thompson’s (1984) review, however, although cut to 20 pages for publication, originally was 100 pages long. The authors of the chapters in this volume were constrained to just 40 pages on focused aspects of health communication, and most still found keeping to this limit a daunting task. In the case of every chapter, several books could have been written on the main topic. Because the goal of this handbook is to present a survey of health communication, the authors did in fact work and rework their chapters to conform to the page limits. It is hoped that this volume provides a worthwhile introduction to the various areas of health communication and encourages its readers, whether students, scholars, or researchers, to delve further into these areas on their own by using the representative (although by no means complete!) citations in each chapter. HISTORICAL PROGRESS

Comparing the early reviews and exhortations to research in this area with the reviews herein indicates the massive movements in scholarship that have occurred. It also indicates, however, that progress is still to be made. Costello’s (1977) review, for instance, focuses upon only four functions of communication in health care: diagnosis, cooperation, counsel, and education. Although, on the broadest level, these four functions are still apparent in the health communication research, health communication concerns have moved well beyond this. For instance, the chapters on organizational issues (Chapters 15–19) address communication concerns that cannot be limited to those narrow foci. The same is true of those scholars who bring a rhetorical or narrative perspective to the study of health communication. Costello’s discussion of research on media issues and campaigns as they relate to health was by far the smallest of his discussions, but that area of research is now among the most widely studied, as demonstrated by Chapters 20–26. Cassata (1977), too, focused his review on interpersonal aspects of health communication. Indeed, Cassata noted that “theories on the dissemination of health education and strategies for patient education still need to be explored by communication specialists” (p. 500). Three years later, Cassata’s (1980) review of the themes identified by Dervin and Harlock’s (1976) review of health communication research included only one that did not focus on interpersonal aspect

1. INTRODUCTION

3

of communication. He argued that “since the development of ICA’s Division of Health Communication, there have been no significant developments in health communication as a field of study” (p. 588). Cassata went on to outline criteria for a discipline, almost all of which the reader will find fulfilled in the chapters in this volume. Other notable changes have also occurred since the early reviews of health communication research. Thompson’s (1984) critique indicated numerous problems in health communication research: a simplistic conceptualization of communicative processes, findings that are not useful to practitioners, scholarship that did build on past research, a lack of theorizing, a lack of emphasis on issues likely to impact those of lower socioeconomic classes, a tendency to blame the health care professional for communication problems, and a focus on individual members of communicative interactions rather than the dyad. Again, the reader will find few of these problems evident in the research summarized in this volume, although several of the authors note that research still tends to avoid a focus on the dyad in favor of looking at (most commonly) the health care provider or (less commonly) the patient (or client or consumer). Thompson suggested a focus on health outcomes, which has now become apparent in some research (see, for instance, Chapter 7). A RESEARCH AGENDA?

In the flagship issue of Health Communication, several noted scholars were asked to suggest an agenda for health communication research. Although different scholars, of course, recommended various directions for research, it is encouraging to note how many of the suggestions they offered have now been fulfilled. The development of the field has come in a decade and a half (the editor of Health Communication is accepting articles for volume 16 as this introduction is being written). Barbara Korsch (1989), for instance, recalled reactions of dismay at the apparent audacity of the early researchers, who even proposed a scientific study of physician-patient communication. She wrote that “in the very beginning there was not even enough evidence to indicate that there were any features of doctor-patient communication that predictably influenced patient responses” (p. 6). Part II of this volume is full of discussions indicating such predictable influence. Korsch’s essay also suggested four key research tasks, all of which have now been addressed in the literature: (a) defining desirable outcomes of health communication (see Chapter 7), (b) exploring ethical considerations (see Chapter 30), (c) integrating some of the more isolated pieces of provider-patient interaction (see Chapter 4, although many of the chapters are pertinent to this task), and (d) treating innovative pedagogy for teaching communication skills (see Chapter 5). Similarly, Kreps’ (1989) essay in the initial issue of Health Communication recommended several directions that have now been taken. He cited Bowers’ (1969) exhortation to make communication research more socially relevant, and this goal has certainly been fulfilled in the research presented here. He also discussed Boulding’s (1956) guidanceadvocating alliances between the professionals and the academics (see Chapter 29) and described the need to reach out and impact health care policy (see Chapter 18). In yet another essay in that direction-setting issue, David Smith (1989) argued in favor of theoretical and methodological pluralism, a perspective that is reflected in Chapters 2 and 6, among others. “Messy” research, a focus on narratives, and consulting with research participants, all of which he advocated, are also recurring themes in this volume. Paul Arntson (1989), in his essay, focused on the role of dealing with uncertainty in health care. Uncertainty is perhaps best addressed in the health communication literature through an

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application of Austin Babrow’s (1992) problematic integration theory, which is discussed in several chapters (see, e.g., Chapter 8). Arntson (1989) and Nussbaum (1989) both advocated broadening our study of health communication beyond the traditional health care context. This issue is discussed in numerous chapters in Parts III through VI but perhaps nowhere better than in Chapter 14. Several other of Nussbaum’s suggestions have also been addressed, including the suggestions to focus on the elderly (see Chapter 9) and to examine more closely information flow in health care (see the chapters in Part V). OVERVIEW

Making use of several decades of research on health communication, the authors of the chapters in this handbook have attempted to summarize what we now know about communicative processes as they relate to health and health care and to recommend directions for future research. The book is divided into six parts. The first part presents a broad look at the contribution of theory to health communication, and the following parts organize health communication issues within contextual frameworks, which are traditionally used in the discipline of communication. All of the parts are preceded by a brief introduction. The first part, edited by Katherine Miller, addresses some introductory theoretical and metatheoretical issues. It includes a chapter by Richard Street that is likely to guide health communication research for years to come. It also contains a chapter by Barbara Sharf and Marsha Vanderford on illness narratives and a chapter by Austin Babrow and Marifran Mattson on theorizing about health communication. The second part, edited by Teresa Thompson, focuses on provider-client communication. Its chapters discuss such topics as communication skills training, outcomes of provider-patient interaction, disclosure issues, methods for studying provider-patient interaction, and special populations. Part III, edited by Alicia Dorsey, deals with social and community health issues, including community organizing, community health risk management, social support, everyday interpersonal communication and health, and marginalized populations. Part IV, edited by Katherine Miller, includes chapters on organizational forms, stress and social support, groups and teams in health care, organizational rhetoric, and communicating wellness initiatives. The next section, on media issues, is edited by Roxanne Parrott. It contains chapters on health campaigns, health message design strategies, narrowcasting health messages, telemedicine, public relations in health communication, health information in the media, and health literacy. The handbook closes with a unique section on lessons learned. Edited by Alicia Dorsey, it includes important contributions by individuals who have worked to combine academic and policy (practitioner) perspectives within the field of health communication. This section concludes with a chapter on ethics in health communication research. The field of health communication has achieved an important and useful body of knowledge capable of improving our understanding of all communicative processes as well as our understanding of the social intersections and implications of health issues. This handbook attempts to bring together the entire corpus of work related to the study of health communication in an effort to educate those new to the field, summarize research for those already knowledgeable about health communication, and promote future research on all aspects of the relationship between communicative processes and health and the delivery of health care.

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REFERENCES Arntson, P. (1989). Improving citizens’ health competencies. Health Communication, 1, 29– 34. Babrow, A. S. (1992). Communication and problematic integration: Understanding diverging probability and value, ambiguity, ambivalence, and impossibility. Communication Theory, 2, 95–130. Boulding, K. (1956). General systems theory: The skeleton of science. Management Science, 2, 197–208. Bowers, J. W. (1969). Implications of the New Orleans conference recommendations from the perspective of behavioral scholarship. In R. J. Kibler & L. J. Barker (Eds.), Conceptual frontiers in speech communication (pp. 184–189). New York: Speech Association of America. Cassata, D. M. (1977). Health communication theory and research: An overview of the communication specialist interface. In B. D. Ruben (Ed.), Communication yearbook 2 (pp. 495–503). New Brunswick, NJ: Transaction Books. Cassata, D. M. (1980). Health communication theory and research: A definitional overview. In D. Nimmo (Ed.), Communication yearbook 4 (pp. 583–590). New Brunswick, NJ: Transaction Books. Costello, D. E. (1977). Health communication theory and research: An overview. In B. D. Ruben (Ed.), Communication yearbook 1 (pp. 557–568). New Brunswick, NJ: Transaction Books. Dervin, B., & Harlock, S. (1976, May). Health communication research: The state of the art. Paper presented at the annual convention of the International Communication Association, Portland, OR. Korsch, B. M. (1989). Current issues in communication research. Health Communication, 1, 5–10. Korsch, B. M., Freeman, B., & Negrete, V. F. (1971). Practical implications of doctor-patient interaction analyses for pediatric practice. American Journal of Diseases of Children, 121, 110–114. Korsch, B. M., Gozzi, E. K., & Francis, V. (1968). Gaps in doctor-patient communication: Doctor-patient interaction and patient satisfaction. Pediatrics, 42, 855–871. Korsch, B. M., & Negrete, V. F. (1972, February). Doctor-patient communication. Scientific American, 227, 66–74. Kreps, G. L. (1988). The pervasive role of information in health and health care: Implications for health communication policy. In J. Anderson (Ed.), Communication yearbook 11 (pp. 238–276). Newbury Park, CA: Sage. Kreps, G. L. (1989). Setting the agenda for health communication research and development: Scholarship that can make a difference. Health Communication, 1, 11–16. Nussbaum, J. F. (1989). Directions for research within health communication. Health Communication, 1, 35–40. Pettegrew, L. S. (1988). Theoretical plurality in health communication. In J. Anderson (Ed.), Communication yearbook 11 (pp. 298–308). Newbury Park, CA: Sage. Smith, D. H. (1989). Studying health communication: An agenda for the future. Health Communication, 1, 17–28. Thompson. T. L. (1984). The invisible helping hand: The role of communication in the health and social service professions. Communication Quarterly, 32, 148–163.

I Introduction Katherine Miller [part 1] Texas A&M University

Teresa Thompson [part 2] University of Dayton

Alicia Dorsey [part 3] Texas A&M University

Katherine Miller [part 4] Texas A&M University

Handbooks serve distinct purposes within an academic discipline. In a sense, they provide both the history and the geography for a field of study, and the publication of a handbook suggests both that the discipline in question has a history worth recounting and can be seen as being “on the map.” This is clearly the case for the discipline of health communication. Our research has moved from relatively atheoretical considerations of a variety of health-related issues to sophisticated considerations that marry the discipline to important theoretical traditions in social sciences and the humanities. In short, health communication clearly has a history worth recounting. Similarly, the discipline of health communication has moved from a relatively undifferentiated and random landscape to one of complex peaks and valleys, rivers and lakes, shifting boundaries and borders. Thus, the cartography of health communication is also worthy of consideration. Both maps and historical documents require context, however, and the first section of this handbook provides that context. Specifically, the three chapters presented in this section lay out boundaries of the field, provide context into how the discipline of health communication has developed, lay out competing understandings of the theoretical underpinnings of our understandings, and argue for directions into future scholarship in health communication. In essence, these chapters set up the context for succeeding chapters on specific research on health communication—research considering

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patient-provider interaction, social and community health, health in the media, and health care organizations. In her initial chapter introducing the reader to the Handbook of Health Communication, Teresa Thompson takes on the task of providing a brief historical account of the field as a whole and defining some of the outlines of the maps that now define health communication and that will shape health communication scholarship in the future. As she notes, although the field of health communication has only had formal status for three decades or so, questions that join the critical issues of interaction and well-being have been investigated for many years. However, the institutional history of health communication has moved at a very rapid pace, and the very existence of this handbook serves as evidence of the “coming of age” of the discipline. The second three following chapters of this section, then, serve to introduce the reader to some of the more theoretical issues that have engaged health communication scholars in recent years and that will continue to engage them in the future. Austin Babrow and Marifran Mattson provide a comprehensive map of the discipline in their consideration of Theorizing About Health Communication: Preliminary Considerations. Of course, the drawing of any map depends to some extent on the cartographers, and these mapmakers have used several important frameworks to guide their understanding of theory in the discipline. Specifically, they consider a variety of themes and tensions that have characterized health communication scholarship (interplay of the body and communication, science and humanism, idiosyncracy and commonality, and issues of certainty and uncertainty) and analyze those themes using a theoretical map of the field of communication developed by Robert Craig. This analysis, then, serves both to define and explore issues within health communication and to place those issues within the larger disciplinary matrix of communication. In the third chapter of this section, Illness Narratives and the Social Construction of Health, Barbara Sharf and Marsha Vanderford explore an important trend in health communication research that is clearly linked to some of the issues described in Babrow and Mattson’s chapter. Specifically, Babrow and Mattson note the shift in much communication research from an analysis of communication that emphasizes concepts such as “exchange” and “transmission” to one that emphasizes the constitutive role of communication in (re)creating social reality. Sharf and Vanderford explore this tradition by considering general concepts of the social construction of both illness and well-being and by looking extensively at one important approach within this tradition—the search for narrative understandings of physical, emotional, mental, social, and spiritual health. In the final chapter of this section, Communication in Medical Encounters: An Ecological Perspective, Rick Street examines one of the most studied issues in health communication—communication in medical encounters between providers and patients. This chapter is included in this introductory section rather than in the section on interpersonal relationships, however, because Street works to establish a comprehensive model that both incorporates extant research and points to important new directions for scholars. Specifically, Street proposes an ecological perspective on medical encounters that both explains key processes between patients and providers and places those processes within the social contexts that have a critical emphasis on both participants in the medical encounter and the encounter itself.

2 Illness Narratives and the Social Construction of Health Barbara F. Sharf Texas A&M University

Marsha L. Vanderford Centers for Disease Control

Rose, a 20-year-old college sophomore, was the designated driver for a group of friends coming home from a party one evening in the suburbs of Charleston, South Carolina. The group lost their way, and while searching for a familiar landmark, Rose failed to stop for a blinking red light. After a police vehicle tailed her car for a few miles, she was signaled to pull over to the side of the road. The police officer shined a flashlight on the three occupants of the car, asked to see Rose’s driver license, directed her to get out of the car, then queried, “What’s the matter with your eyes?” Though Rose explained that, because of a neuromuscular problem, her eyelid muscles sag when she is tired (a condition called ptosis), the officer accused Rose of driving while under the influence of alcohol or drugs, an allegation that Rose vehemently denied. The officer replied that she could see the effect of alcohol in Rose’s eyes. Rose explained that she suffered from a neurological disease called myasthenia gravis, in her case a congenital condition. Myasthenia gravis is caused by inadequate connections between the nervous system and the muscles, resulting in generalized muscle weakness and periods of extreme fatigue. Medications help to keep the symptoms from being overpowering and to slow degeneration but do not eliminate all the problems. Although Rose showed the officer a disability parking permit, the officer did not buy this explanation. Instead, she insisted that Rose walk a straight line, but being stressed and tired, the young woman had trouble with this task. Rose asked to be given a breathilizer test twice, but her requests were denied. In the end, the officer ticketed her for driving under the influence of alcohol (DUI), took her bail bond card, and gave her a date for a court appearance. Rose followed the advice of a disabilities lawyer, who arranged to have Rose’s DUI charges dropped in exchange for her having to take a test for a special driver’s license that permanently categorizes her as a person with a neuromuscular ailment and that requires an annual retest.

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Rose’s story is an excellent illustration of how matters of health and illness are socially constructed; that is, how bodily and psychological states of being are perceived and imbued with social and cultural meaning. In this chapter, we start with a brief overview of the social construction perspective, its bases in rhetorical and communication theory, and its application to communication referencing matters of health and illness. Following this introduction, we center our attention on socially shared health-related narratives, among the most common and powerful forms of symbolic construction. Although we refer to a widely diverse scholarly literature, we have not tried to present an exhaustive survey of the field. Instead, we refer to exemplary studies, including some of our own, that we find particularly instructive for understanding the health narrative approach. We then identify, discuss, and illustrate five functions of health narratives: sense-making, asserting control, transforming identity, warranting decisions, and building community. We conclude with several points to consider as the narrative perspective becomes increasingly incorporated into health communication scholarship. Throughout this chapter, we use Rose’s narrative to illuminate our conceptual explanations. EVOLUTION OF THE SOCIAL CONSTRUCTION APPROACH

Sociologists Peter Berger and Thomas Luckmann (1966) defined the social construction of reality as a dialectic between social reality and individual existence—in other words, a symbolically based tension between commonly accepted knowledge and personal understanding. Social constructions of reality are mediated through linguistic expression articulated among people and communities, shaped and recorded as history. The philosophical roots of the symbolic representation of reality are clearly evident in historical and contemporary rhetorical and communication theories. Ever since Plato in the Gorgias ridiculed the sophistic practice of teaching rhetoric as a vehicle of appearance rather than of truth, scholars have debated the role and purpose of communication. Two opposing positions have characterized the controversy: (1) communication ought to represent, to the extent possible, the material world and its truths and (2) language creates the world and its meanings. Two thousand years ago, the Sophists were vilified for holding a relative view of truth and teaching rhetorical skills designed to create appearances and influence public perception. The early Christian Church fathers looked with suspicion on later sophistic rhetoricians, believing that possession of religious truth was inherently persuasive without interpretation or elaboration. This controversy has endured up until the present. Thirty-five years ago, rhetorician Robert L. Scott (1967) argued that rhetoric is epistemic, a way of knowing. His argument presumes that truth is not immutable, able to be conveyed from one person to another, but rather a “set of generally accepted social norms, experience or matters of faith that serve as reference points in working out [human] contingencies” (p. 12) and that are “the result of a process of interaction at a given moment” (p. 13). In short, truth is created through the process of communication. Scott’s position has prompted a variety of responses, resulting in a debate between contrasting stances. One group of disputants claims that rhetoric is an inadequate vehicle for truth (e.g., Croasman & Cherwitz, 1982), whereas another group holds that all knowledge, even our understanding of physical objects, is created through language and intersubjective consensus (Brummett, 1976, 1982). A middle ground was laid out by Railsback (1983), who proposed that material reality is separate from language but not meaningful without symbolic interpretation. Her outlook provides a framework for examining the tension between material reality and the symbolic representation of health, illness, and disease. In a recent review of communication theories, Robert Craig

2. ILLNESS NARRATIVES

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(1999) reiterated the dialectic of acquiring and communicating knowledge of reality in slightly variant terms. Craig differentiated between a transmission concept that posits communication as the transfer of information in the form of messages “from one mind to another” (p. 125) and a constitutive approach that conceptualizes communication as a “process that produces and reproduces shared meaning” (p. 125). Elaborating upon this basic distinction, he made a case for using the constitutive or social construction perspective as a “metamodel” encompassing all the various particular theories that attempt to explain how communication works. In the context of health, illness, and medical care, the application of the constitutive model of communication reveals the complexities of moderating between scientific truth derived from the physicality of organic disease and the materiality of bodies, and the meanings of human suffering experienced by patients, their loved ones, and the health professionals who care for them. The social construction approach to health communication has primarily emerged as a reaction to the biomedical perspective, long dominant in the health care arena. Similar to the ancient and contemporary schisms in communication theory we have described, the medical community has historically divided communication about health into two kinds of discourse. The first kind uses objective language to present traditional,1 biomedical information about organic, verifiable, measurable signs of disease conveyed in the authoritative voices of physicians and other health providers, evidenced by clinical signs, laboratory tests, imaging, and other technologies. The second kind uses subjective language to talk about the internal, nonverifiable experience of illness, of being in dis-ease. People undergoing health problems and their families develop their own understandings about physical symptoms, revealing health beliefs, augmented with personal and cultural significance, that transcend the material signs relied upon by clinicians. In medical contexts, the scientific detachment and empiricism of practitioners is valorized, whereas the subjective experiences of patients, reflecting moral, spiritual, and social elements of illness, “inevitably connote insubstantiality, something ‘existing only in the mind’ ” (Donnelly & Brauner, 1992, p. 481). Patients whose accounts stray from physical symptoms, the review of bodily systems, and the medical chronology are characterized as “poor historians” (Brody, 1987) who distort reality with subjective perception and tangential interpretation. However, over the past 25 years, many participants in the health care system, including clinicians, health educators, social scientists, medical humanists, and patients, have challenged biomedicine’s hierarchical epistemological claims, asserting that the “scientific method is only one of several routes to knowledge” (McWhinney, 1989, p. 38). Social psychologist Elliot G. Mishler (1981) laid the foundation for seeing the implications of social construction theory in the context of clinical care. Starting with the proposition that “the world as a meaningful reality is constructed through human interpretative activity,” Mishler explained that “whether or not a particular behavior or experience is viewed . . . as a sign or symptom of illness depends on cultural values, social norms, and culturally shared rules of interpretation” (p. 141). Thus, observation of the same biological phenomenon, such as Rose’s heavy-lidded eyes and inability to walk a straight line, is imbued with quite a different meaning for the police officer, for Rose’s friends, and for Rose herself. Furthermore, Mishler (1984) helps us to understand that within a clinical encounter, although the practitioner and the patient are ostensibly discussing the same physiological

1 Labeling biomedicine as “traditional” is itself an act of social construction. Many of the healing or treatment modalities referred to as “alternative” or “complementary” long predate regular medicine.

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symptoms and reported history, there is nearly always a contrast, and often outright conflict, between what he calls “the voice of medicine” and “the voice of the lifeworld.” Rose has enjoyed a positive relationship with Dr. Harvey, her neurologist, for several years. Nonetheless, there are inevitably significant differences between how the doctor understands the manifestation of myasthenias gravis in his patient as an organic process and Rose’s experience of the impact of the disease on her intellectual, social, and emotional life. For instance, as the voice of medicine, Dr. Harvey is concerned with quantitatively assessing changes in the degree of muscle weakness in her eye. For Rose, the voice of the lifeworld, her concern with optical fatigue is focused on how it will impact her working on a computer screen under stress and thereby affect her performance on the Graduate Record Exam. From a social construction perspective, the work of health communication scholarship is to unpack the sociocultural sources of symbolic usage in health care, for people often accept it as natural and inevitable without considering how meanings emerge from contextual and political sources in ways that mold health beliefs and behaviors, clinical judgments, and organizational routines.2 Two influential works exemplify how the voices of medicine and of the lifeworld have become commingled within everyday discourses. Social critic and cancer survivor Susan Sontag’s (1978, 1988) astute comparative analyses of tuberculosis in the 19th century and cancer and AIDS in the 20th century demonstrate the pervasiveness of disease-related connotations in many nonmedical spheres of life as well as how language shapes the identities of people suffering with those diseases, often in negative, problematic ways. For example, over the past 30 years, cancer metaphors have been used to describe the Watergate coverup of the Nixon administration, the scandalous personal behaviors that propelled the impeachment of Bill Clinton, and, most recently, rhetoric from the Bush Administration concerning terrorism in the United States (e.g., expressions of commitment to keep terrorist cells from growing). Sontag claimed convincingly that such insidious verbal comparisons contribute considerably to the suffering of people with cancer. Pushing the direction of Sontag’s work further, cultural studies scholar David Morris (1998) indicated the limits of the biomedical model of health and disease in his discussion of postmodern illness—“situated at the crossroads of biology and culture” (p. 71). In his view, postmodern illness is characterized by ambiguity of existence, is reflective of lifestyle and politics, and is fragmentary and interdisciplinary. Morris cites such biocultural manifestations of postmodern illness as medically mysterious diagnoses like chronic fatigue syndrome, depression, and attention deficit disorder, as well as equally mysterious modes of therapy like pain clinics and modes of complementary healing (mysterious insofar as they resist verification through empirical techniques).3 Cross-cultural scholarship has been particularly useful in revealing the misunderstandings that arise from conflicting cultural constructions. The work of Arthur Kleinman (1988; Kleinman, Eisenberg, & Good, 1978), a psychiatrist and medical anthropologist, has been pivotal in illustrating how illnesses are understood, explained, and acted on through ethnocultural lenses, which he calls explanatory models. His examples show how differences in explanatory models in clinical settings often increase patients’ suffering and sometimes 2 While a wide variety of methodological approaches have been used in social construction work, depending on the nature of the questions asked, there has been particular emphasis on qualitative, naturalistic methods, including archival explorations, discourse analysis, depth interviewing, autoethnography, and participant observation. 3 No wonder, then, that popular fictional media icon, Mob boss Tony Soprano, is afflicted with psychosomatic anxiety attacks, necessitating weekly appointments with a psychiatrist.

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have life-threatening results. An especially striking application of Kleinman’s conceptualization of cultural constructions in conflict is journalist Anne Fadiman’s (1997) tragic ethnographic description of a young girl caught between the American medical system’s approach to epilepsy and her Hmong immigrant family’s comprehension of the condition they called “the spirit catches you and you fall down.” Even modern Western societies that ostensibly share the tenets of biomedicine interpret the practice of medicine in culturally distinct ways, resulting in strikingly different clinical discourses and modes of care (Payer, 1988). To better understand the confluence of the biomedical and sociocultural, the material and the symbolic, let’s briefly consider the multiple and changing ways in which the concept of health is discussed and applied in everyday contexts by various agents. One of the most common definitions of health is in terms of its opposite: Health is the absence of disease. But health is not necessarily such an absolute state. On the popular television drama The West Wing, the fictional President Bartlett, an ostensibly astute, ethical, and tough-skinned chief executive, suffers from multiple sclerosis, a degenerative disease that threatens his physical and mental stamina. The public revelation of this illness raises questions that have been asked of politicians in real life as well. Is the president sufficiently healthy to continue his role as a national and international leader? What reasons might have justified the president’s not disclosing his health status from the beginning? In fact, we often speak of being healthy in relative terms. We might say someone is healthy who has a chronic illness or permanent disability but is able to carry out key functions of daily living and enjoy mental well-being despite the presence of pain and physical limitations. Conceptualizing health in this way makes explicit that there are psychological and spiritual components of health integrated with the physical components. In another common usage, the term healthy is used to characterize what is found in nature. Although manufactured pharmaceuticals have been increasingly relied upon to protect against or clear up infections and allergic reactions, decrease pain, and even rejuvenate bones and other body tissues, their undesired side-effects have led to the widespread popularity of herbal remedies, accompanied by an ideology that equates what is “natural” with what is healthy, even if substances found in nature also have unintended, unpleasant consequences. This usage of the term contrasts with the way health care is increasingly viewed as an economic commodity. Consumers purchase it, providers supply it, third-party payers and health care organizations manage it, and primary care practitioners coordinate and guard entry to more specialized modes of treatment. Individuals “shop” for doctors (often from a list of those who are “preferred” financially), and physicians find ways to “fire” problematic patients. A variety of practitioners provide care that is considered alternative (or, more recently, complementary) to what is known as traditional or regular medicine, even if the alternative treatments have existed for centuries, predating modern biomedicine. When the concept of health is applied to populations or communities instead of individuals, other indices may come to the surface (e.g., safety from violence, adequate nutrition and shelter, and availability of meaningful employment). At times, the health concerns of the “public” may conflict with the rights of individuals, as in the case of vaccinations or the segregation of infectious citizens. The several ways in which the concept of health has been situationally applied at a symbolic level clearly have serious material consequences—financial, physical, and social—for an array of stakeholders, including patients, caregivers, insurers, clinical scientists, policymakers, and guardians of public health. In short, materiality and meaning are commingled in the social construction work of health communication scholars.

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NARRATIVE APPROACHES TO HEALTH COMMUNICATION SCHOLARSHIP

As we have indicated, the social construction approach to health communication can serve as a conceptualization and method of analysis for a wide variety of issues and purposes. In this chapter, we focus primarily on a particular type of social construction, the application of the narrative perspective to health contexts, especially in the form of illness narratives. Our objective is to explain and illustrate how viewing narration as the defining paradigm of human communication (Fisher, 1987) illuminates common health-related discourses. Although we might have used this perspective to concentrate on clinical interactions, drug advertisements, the policies and practices of managed care, or other facets of health communication, much of our own previous work has investigated discourses reflecting the experience of illness, both at a personal level and as it is represented in popular media, and so we have chosen this kind of discourse as our exemplar.4 Following rhetorician Walter Fisher’s argument that humans are homo narrans, the species distinguished by its ability and predisposition to tell stories, it is our assertion that the most common way of communicating our personally constructed ideas of the realities we experience is through the social sharing of narratives—stories about our lives. Narratives not only reflect individual views of the world but also provide explanations for why things happen in certain ways. They help us to recount people and events of significance, account for motives, causes, and reasons (Fisher, 1987), and are the primary means for involving others in our own world view (Bruner, 1986). Such stories regularly occur in many kinds of contexts. Some are carefully crafted accounts conveyed in public settings and mass media, others are informal tales incorporated into ordinary conversations. As a form of interaction, the illness narrative implies a reciprocal role for listeners, namely, to witness—through attentive listening, acknowledgment, understanding, and perhaps empathy—the suffering of others (Kleinman, 1988). Attention to personal narratives began to emerge in health communication scholarship concurrently with the development of a conceptual distinction between disease, defined as organic malfunctions and pathological processes whose signs and symptoms typically can be observed and quantitatively assessed; and illness, the patient’s experience of disease or ill health (Kleinman, et al., 1978). Ahmed, Kolker, and Coelho (1979), among others, posited a third concept, sickness, to talk about the labels, roles, and societal expectations projected onto diagnosed individuals. Illness is the phenomenon studied by health communication scholars who are interested in the ways that individuals, and sometimes groups, portray their experiences of ill health in specific, individualized contexts. Narrative-based investigations extend the discussion of health and disease beyond the biomedical to encompass the meaning that patients ascribe to their illnesses as they affect roles, relationships, and identities, as well as levels of meaning that reflect social, organizational, ethnocultural, and familial assumptions and influences (Sharf & Kahler, 1996). Clinical medicine has also been shown to employ narrative in its most fundamental activities, including clinical rounds and case reports (Good, 1994; Hunter, 1993; Poirier & Brauner, 1988) and chart notations (Poirier & Brauner, 1990; Poirier et al., 1992), but 4

It will be evident from the range of references cited that we do not claim the health-related narrative as the sole province of health communication. To the contrary, this research on this topic is quite interdisciplinary. Nonetheless, we strongly believe that health communication scholars have made significant contributions to its study.

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notably without representation of the patient’s voice (Donnelly, 1988). Patients’ accounts of their illnesses, Mishler’s “voice of the lifeworld,” are proving to be significant alternate “routes to knowledge,” serving as a means to comprehend the storytellers’ construction of their illness experience. As increasingly depicted through ethnographies, patients’ writings, and media portrayals, such stories give legitimacy to the often unacknowledged expertise of patients, help to establish identity (both of individual patients and groups who share a common health concern), and provide unrivaled insight into the experience of illness (Vanderford, Jenks, & Sharf, 1997). Video representations of patients’ voices are starting to have a significant impact on the education of physicians (Makoul, 1999; VIA Website). Like other types of stories, illness narratives are implicitly appealing and comprehensible because they make use of familiar elements with which we have learned to shape our perceptions of the world. Such elements include characters, the people who enact the events of the story (for example, heroes, villains, victims, and innocent bystanders)5; scenes, the settings in which key events occur (e.g., a clinic or hospital, home, the workplace); motives, the thoughts, emotions, and circumstances that impel characters to take certain actions (for example, fear, concern, anger, accommodation); chronologies or time frames (which emphasize past, present, or future); plots or dramas, the meaning that emerges from how key events and characters’ actions are configured in relation to one another (Charon, et al., 1996; for example, battling disease, accepting one’s fate, or being empowered to make choices and take action); and narrator’s voice or point of view (for instance, a story is always told from someone’s perspective, thus necessarily not representing other perspectives). Finally, as important as the story elements that constitute a narrative is the telling of the story—the process and style of communicating the narrative. Implicit in the way stories of sickness are told are underlying values, such as the desire for information, personal control, recognition of individuality, or enjoyable quality of life. Lack of congruence between the explicit or implicit values within the stories of practitioners and patients is often the source of significant problems in clinical care (Geist & Gates, 1996; Vanderford, Smith, & Harris, 1992). Patient accounts compensate for the partiality and objectification of medical records, creating a more complete picture of illness, health, and disease. Health communication scholars have approached illness narratives as psychosocial maps, revealing the storytellers’ emotional and cognitive journeys. These narratives challenge the voice of medicine as the primary means of understanding health and disease. To interweave both the voice of medicine and the voice of the lifeworld into a consistent, mutually agreed upon story that functions as the basis for clinical care and decision-making is a primary communicative goal, albeit one that is often difficult to achieve (Geist & Dreyer, 1993; Sharf, 1990). Sociologist Kathy Charmaz’s (1999) discussion of her research on patients’ accounts of suffering due to chronic disease illustrates the range of communicative experiences of interest to narrative scholars. “[Suffering] is of the self and it is social. As suffering spreads out, it shapes social relations and limits social worlds” (p. 365). It changes the interaction that sufferers have with others and the roles they can play. As a result, the patient’s very identity is affected. “Although meanings of suffering may begin with the body, they

5 Stories of sickness sometimes treat the body or body parts as characters independent of the person to whom they belong (Cassell, 1985).

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include emotions, accompany losses, and thus, can arise through social as well as corporeal existence” (p. 366). Patients’ changing relationships, interactions, roles, identities, emotions, losses, and growth are the elements of dramatic stories, naturally drawing the attention of narrative scholars (Vanderford et al., 1997). In defining how the application of narrative thought has changed the practice of health care ethics, Jones (1996) pointed to the importance of the particular circumstances and situational details that form the basis for inductive analysis; the acceptance of complicated human emotions, behavior, and connections; and the nonhierarchical recognition and support of people’s capacities “to construct their own life stories and make their own decisions” (p. 268). In their analysis of narratives that unfolded during a support group for epileptic patients, Arntson and Droge (1987) identified four functions of health-related storytelling, that have since been identified in subsequent studies of individuals’ illness accounts. Illness narratives help patients (a) make sense of health and disease, (b) assert control in the midst of physical and psychological losses, (c) transform their identities and social roles as a result of altered health and disease, and (d) make decisions about their health. As illness narratives increasingly move beyond clinical and interpersonal levels of communication and are shared in broader, more public venues, they serve a fifth function: to solidify health-based communities with common visions and social agendas. These five socially constructive functions of health-related storytelling provide the organizational structure for the remainder of this chapter. In summary, the narrative approach to health communication highlight the meaning of the illness experience, primarily to the individual or group with a particular health problem and secondarily to others who witness or read those personal accounts. All who participate in the telling or hearing of an illness narrative help in creating its significance and act as its interpreters. NARRATIVE AS SENSE-MAKING

In the incident described at the beginning of this chapter, the young woman appears to have been unfairly treated. But had the same events been narrated from the police officer’s perspective, that is, from the viewpoint of an individual charged with looking out for reckless drivers, the meaning of the anecdote would almost certainly be very different. After all, Rose’s ailment is, for practical purposes, a largely invisible disability (Matthews & Harrington, 2000) and therefore easy to misinterpret. Unlike paralyzed people confined to wheelchairs or blind people who walk with white canes or guide dogs, Rose appears “able-bodied.” Heavy-lidded eyes due to muscle fatigue constitute a visible but rather subtle sign that the officer noted and interpreted as evidence of alcohol or drug intake. As an alternate narrator, the officer would provide a strikingly different interpretation of this same physical symptom. Most narrative research focuses on the sense-making function of stories—the ability of narratives to create meaning of random events, people, and action. Organizational theorist Karl Weick (1995; see also Miller, 2001; Miller, Joseph, & Apker, 2000) has developed a conceptualization of the process of sense-making that emphasizes the pivotal role of communication and includes attributes particularly relevant to the creation of narratives that enable us to cope with chaotic or confusing conditions often encountered in our everyday lives. According to Weick, sense-making is, among other things, retrospective (is affected by our past experiences); emergent (needs to take into account new experiences);

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interactive (is influenced by social relations and information gained from others); and driven by plausibility (focuses on “what can account for sensory experience, but what is also interesting, attractive, emotionally appealing, and goal relevant” [Fiske, 1992, p. 879]). Weick also points to the strong reciprocal connection between situational sensemaking and one’s notions of personal identity; this link will be explored below as one of the key functions of narrative. Considering these characteristics, much of the development of social and personal meaning is inherent in the creation of good stories. Fisher (1985) asserted that narratives are focused on “words and/or deeds—that have sequence and meaning for those who live, create or interpret them” (p. 2). Individuals are believed to make sense of unexpected, random events as they construct accounts of what they experienced, connecting people and events to create some understandable pattern (Churchill & Churchill, 1982). Critical to this sense-making activity is the distance in time between the actions in the story and the “telling” of it in retrospect. Recalling the events in hindsight, the storyteller can “assume a reflective, observant posture toward those events in a way that was impossible when the events were in progress.” (Brody, 1987, p. 14).6 Storytellers can interpret events, ascribe meanings, justify actions, and make links in retrospect that are less likely to be discerned when the narrator experiences events in real time. Although the sense-making role of storytelling is apparent in accounts in which illness does not occur, this function is especially significant for patients whose lives have been altered by the suffering that results from severe chronic or acute disease or disability. While the details of individual illness narratives are personal and context-specific, scholars who study patients’ stories as a discursive genre have derived general categories of meta-narratives based on how the storytellers make sense of the illness experience. Literary analyst Anne Hunsaker Hawkins (1993) calls this genre pathography, which she asserted has spawned four major types of myths or stories: those of rebirth and the promise of cure, those of battle and journey, those of dying, and those of health beyond medicine (i.e., health through alternative modes of healing). Similarly, sociologist Arthur Frank (1995), himself a survivor of heart disease and prostate cancer, argued that “wounded storytellers” create stories of restitution or recovery, stories of chaos or illness with no hope of recovery, and stories of quest or journey in which the suffering engendered by illness leads to larger purposes or understandings. Whatever the category, narrative scholars agree that the very voicing of an illness experience in story form is itself an act of healing and agency. By virtue of providing a reason for the person’s illness experience, a narrative has the potential to diminish suffering (Brody, 1987) and to allow the person to assume accountability for him- or herself and perhaps others in similar circumstances (Frank, 1995). Naturally, not only people diagnosed with a disease but their family and friends are affected by the illness experience. As caretakers, providers of social support, and fellow sufferers, people in a patient’s extended network create their own explanations of events and experiences. Although narrative scholarship has not sufficiently explored the comparative accounts of patients and their loved ones, a few excellent examples exist, such as two remarkable, intertwined narratives in which a surviving life partner and a partner dying of breast cancer recorded concurrent impressions of shared events over a 2-year period from diagnosis through death (Butler & Rosenblum, 1991). Writes Sandy, the surviving partner: 6

In some renditions, the narrator is not only relaying past events, but is looking to the future as well. In cases where death appears to be imminent, the reduction of distance in time and psyche between the narrator and the yet-to-be experienced resolution often adds to the power and poignancy of the narrative. See, for instance, Christina Middlebrook’s account (1996) of coping with metastatic breast cancer.

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Last night I wrote, “I am excused. I excuse myself. Cancer is what I do now.” Cancer is my work. Barbara’s mood swings, doctor’s appointments, medicines. My feelings. Our writing together. All of it has become my central activity. Cancer swallows up the air of my life and insinuates its presence everywhere. Nothing remains untouched. Inviolate. (p. 48)

Sense-making may also differ among people with seemingly similar illness experiences. A striking example of the power of narrative to help make sense of illness is found in contradictory accounts of women with breast implants (Vanderford & Smith, 1996). In an extended study of patients’, physicians’, and popular press accounts of the breast implant controversy, the stories of women who blamed subsequent illnesses on their implants are compared with the stories of those who also had undergone synthetic breast surgery but did not hold their implants responsible for health problems. The latter group did not blame their problems on implants because their health issues fit within a larger narrative concerning the imperfection of medicine. In one account, a woman tells a story that integrates her understanding of general medical risks with her personal experience: They told me in ‘77, “This [implant] is going to last forever.” I didn’t question it any further. It didn’t dawn on me to question it further, but I do remember them saying that, because I had a good rapport with the doctor. The doctor that I had was the head of plastic surgery at Duke at that time. Dr. X, you know, he just laughed about it. And I said, “You mean when I die they are still going to be there?” And he said, “You are going to be laid out, they are still going to be up there.” I mean, that was their attitude at that time. And of course they were mistaken. But I don’t have any, I don’t know. It was an error, nothing in our bodies last. A hip replacement is silicone, it doesn’t last (p. 82)

This storyteller integrates the rupture of her implants into the natural evolution of knowledge about medical devices and health risks. In this account, the physician is not a villain; his knowledge was just incomplete, albeit the best possible at the time. For the narrator, the risk of a rupture is to be expected as the natural consequence of the deterioration of medical devices. In contrast, women who blamed their implants for a host of illnesses generated stories in which no reason other than their implants could account for their health problems. The chronological relationships developed in the accounts pointed the blame directly on the implants (and indirectly at the plastic surgeons who implanted them), as in the following excerpt: I started having problems a few weeks after that with the implants. . . . The implants were placed directly in, and then three weeks after that I had an infection in where the skin turned real black . . . I mean problem after problem . . . I kept getting infections . . . and there was a bunch of lymph nodes . . . they just kept swelling up . . . swelling of the joints and dryness in your eyes, your mouth . . . I’ve had a rash that would come upon my hands and my feet . . . my dermatologist didn’t know where it was coming from. . . . Since all this started with the implants, I get colds easier and infections, like these little skin cancers they’ve been freezing off . . . nothing heals, I mean every time I turn around they have to put me on antibiotics to get anything to heal. . . . My menstrual cycle . . . has been irregular for a little over a year now . . . (Vanderford & Smith, 1996, p. 32)

This woman’s story highlights the implant procedure as the point at which never-before experienced symptoms and health problems begin to occur.

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As these excerpts illustrate, narrative sense-making frequently involves assigning responsibility and sometimes blame, a process of attribution that occurs both at the level of personal reasoning about illness as well as at more public levels, such as a health campaign. As rhetoricians William G. Kirkwood and Dan Brown (1995) point out in their study of a variety of nontechnical public communications about cancer, heart disease, drug addiction, and so on, questions of responsibility interwoven into particular health-related narratives (Is being overweight an issue of heredity or lifestyle? Is cancer prevention a matter of individual surveillance or environmental regulation?) are as much rhetorical as scientific. These messages are constructed to vary with the audiences to whom they are addressed. Their objectives include fostering healthy behaviors among the undiagnosed public, easing feelings of guilt among and empowering those who have been diagnosed with a disease, and motivating favorable or unfavorable treatment of the sick (e.g., people with AIDS or smokers). In effect, how causative factors of disease are accounted for provides scenarios of innocent and culpable victims, careless perpetrators, or factors of nature or chance beyond human management. Yet, even in the midst of unavoidable disease or disability, the very act of generating a story allows the narrator a certain degree of agency. NARRATIVE AS ASSERTING CONTROL

In recalling her childhood experiences of growing up with myasthenias gravis, Rose has vivid, painful memories of being teased by schoolmates because she had a difficult time with many ordinary physical activities. As a way of responding to this situation, Rose chose to give a fifth-grade oral report on this disease in which she described what the problem is and how it affects people who have it without specifically mentioning that she herself suffered from it. She remembers this experience with a sense of satisfaction, because she felt she had managed to educate her peers and reduce the teasing without directly sacrificing her privacy. In short, she had discovered her own way to exert control over a hurtful situation through a form of narration that she had chosen. However, 2 years later she experienced the opposite effect. When her medication dosage suddenly failed to manage her symptoms, she became very ill and needed to be hospitalized for nearly 6 weeks, a very difficult episode for a seventh grader. Although she asked the school not to disclose to her classmates why she was in the hospital, her science teacher did exactly that, disregarding her request. In this instance, the suffering from being physically sick was increased by a loss of control of personal information—what she came to regard as a usurping of her personal narrative. The relationship of storytelling to increased perceptions of control is especially important in illness accounts. The experience of severe and/or chronic illness strips away multiple sources of an individual’s perception of control within the realm of his or her own life. A sense of suffering can be exacerbated by varying degrees and kinds of lost autonomy. Some forms of loss are physiological but also have emotional repercussions, such as shame, embarrassment, and frustration. For instance, prostate cancer survivors frequently experience loss of control over their bladders and sometimes their bowel functions. Women who have undergone a mastectomy, in addition to the more obvious change in appearance, may experience a loss of range of arm motion, a loss of strength, and a permanent severe swollenness of the affected arm (a condition called lymphedema). People with epilepsy experience unpredictable seizure activity, losing control of their entire bodies and mental concentration. Those with myasthenias gravis, like Rose, are subject to debilitating bouts of fatigue and weakness. Severe and chronic illness frequently is accompanied by physical restrictions which, in turn, leads to the diminishment

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of social relationships. Patients may no longer be able to work, socialize, or participate in as wide a range of activities as they did previous to the onset of disease. Further contributors to suffering often include a reduction in financial resources, a loss of personal energy, and the need to forgo other pursuits in order to focus primarily on pain relief or rehabilitation. Compounding these losses is an increased dependency on family caregivers, medications, and health care providers. The patient role has traditionally been passive, requiring that individuals seek medical help and comply with their physicians’ recommendations (Brody, 1980; Smith & Pettegrew, 1986). Medical diagnosis and categorization has the potential to stigmatize patients as well as restrict their opportunities for recovery, development, and empowerment (Arntson & Droge, 1987). All these sorts of deficits may combine to create a “loss of certainty . . . loss of certainty means losing the collective myth of a ‘taken for granted’ future as well as the personal belief in sustained health” (Charmaz, 1999, p. 366). Assuming that authorship allows individuals with health problems to reassert some control in the midst of multiple losses, Frank (1995) explained that “seriously ill people are wounded not just in body but in voice. They need to become storytellers in order to recover the voices that illness and its treatment often take away” (p. xii). Turning one’s experiences into a narrative creates order by placing previously unexplainable events into relationships. The act of ordering and predicting the future is an act of control (Churchill & Churchill, 1982), as is recounting the history of previous occurrences. Rose’s remembrances of childhood illness narratives illustrate the importance of constructivist issues including: Whose voice is narrating the story? What information is selected for inclusion or exclusion and for which audiences? An additional significant aspect of authorial control is sequencing. A narrator imposes order on experience by creating a chronology of events: [She] is required to sequence the events of the story temporally: “A” happens, then “B,” then “C.” These temporal associations may then well turn into cause-effect relationships. The story’s “illusion of sequence” can impose order on a chaotic, if not random set of events. [For example,] scientifically there may be no explanation for [the occurrence of symptoms or side effects from medication]. By placing these events within a narrative, they may longer be so unpredictable for the narrator. (Arntson & Droge, 1987, p. 161)

By creating order and attributing causes for symptoms and disease, patients may regain a measure of control, denying the dominance of disorder and unpredictability. Importantly, illness narratives sometimes serve as vehicles for patients to project control into a future in which, as the disease or disability accelerates, they might no longer be able to express their choices to physicians and family members. Such stories told to family members or health care practitioners can serve as an advanced directive in place of institutionalized documents. Although for some, dying of an illness is characterized as losing a hard-fought struggle for life, for others, being able to plan how death occurs (i.e., enabling a “good death”) is one of the ultimate measures of asserting control. A man diagnosed as HIV positive explained: “If you are talking to your doctor and you tell him that you don’t want to be saved by any kind of machine that would help you breathe or whatever, the doctor ought to be able to put that in the chart and he ought to be able to respect your wishes on that point . . . if my heart gives out, don’t start it again “(Vanderford et al., 1992, p. 132). Sullivan’s (1997) analysis of women coping with living with breast cancer also described patient narratives in which women asserted control in the midst of terminal illness.

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Like the man with HIV, these women described themselves acting in ways that projected their wills into situations in which they would later lack agency. For example, they told the interviewer how they had planned and arranged their own funerals, written their personal obituaries, and even arranged care for their pets for after their own deaths. As characters taking action in their own life stories, these women featured themselves as agents in control, despite the impending loss of life itself. In short, narrative form puts the “I” back into a person’s understanding of his or her life. Rather than silently comply with the initiatives and orders of others, the patient narrator asserts him- or herself as agent: “The actual narration of a story, saying the words in the appropriate form, makes a place in the world for [the] narrator” (Churchill & Churchill, 1982, p. 77). Creating a story also allows the narrator to emphasize certain aspects of who that agent is, and how illness has influenced that persona. NARRATIVE AS TRANSFORMING IDENTITY

How does Rose make sense of her illness in telling her own story? Would she define herself as disabled? Depending on whom she’s speaking with, she might describe how she faces moderate restrictions in physical exertion and makes regular adaptations in various aspects of her life, such as the kind of work she does or how much rest she needs. Yet her mom told her a long time ago that everyone is born with or develops some kind of imperfection, so she doesn’t consider herself particularly special and feels only occasionally inconvenienced. Although obviously aware that she suffers from a chronic disease, she doesn’t label herself as “sick,” nor does she feel impeded from living her life in ways that she chooses; hers would likely be a narrative about a busy psychology major, nursery school instructor, and fun-loving young adult. Of course, there have been times in her life when the official diagnosis of her disease, sanctioned by a neurologist, has been a necessity, creating a different version of her narrative. For instance, in the large high school she attended, a special designation of disability was needed to excuse her from certain physical education requirements and to ensure a schedule that limited the distance she would need to walk between classes. Her handicapped parking permit allows her to park her car near the buildings where she needs to go for university classes or business. Because of her ailment, she receives tuition assistance from the state of South Carolina. In these cases, an account that labels her as a disabled individual is necessary and welcomed. On the other hand, she would much prefer to focus on stories that do not categorize her primarily as a person with myasthenia gravis in her social and professional identities. Narratives not only serve as a means to assert agency for persons whose control has been diminished but also provide “wounded” storytellers with a means to reshape their identities, either in functional, enabling ways or, alternatively, with an emphasis on loss, trauma, or impairment. Churchill and Churchill (1982) describe the act of storytelling as an approach to self-knowledge: “Storytelling . . . is a mode of coming to know ourselves. . . . [s]tories are devices which shape agents and events into some intelligible pattern. They weld actors to their actions and doers to their deeds” (p. 74). Chronic illness often disrupts a person’s previously established self-image (Corbin & Strauss, 1988). As individuals experience dramatic changes in their health and “realize the crisis has lasting consequences for their lives” (Charmaz, 1994, p. 269), they also face “identity dilemmas,” including changes in roles, relationships, social circles, and activities. Physician Howard Brody (1987) explains that illness threatens a person’s “continuity of memory” or narrative

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coherency when the individual’s confidence in his or her ability to carry out a “rational life plan” is shaken. When severe and/or chronic illness disrupts one’s life plan, “getting better” may not be possible through physical cure but instead requires the creation of a revised life story with a modified identity; “healing involves moving beyond thoughts of recovery and survival to the creation of a self that can ‘thrive”’ (Sullivan, 1997, p. 50) despite impairment, pain, or a more uncertain future. A familiar example of a transformative story that underscores identity issues is Christopher Reeve’s (1998) first-hand account of his physical and existential journey from movie star and Superman persona to quadriplegic patient and survivor to national health activist for spinal cord injuries. Despite such radical transformations, he claims to be “still me,” a pun referring both to his paralysis and to the preservation of a consistent inner core of self-identity.7 Stories that reflect transformation of identity make use of key narrative features that may include identification of critical, life-changing incidents; the revelation of character through multiple perspectives; and the integration of personal expertise and adaptation to illness. The intersection of chronology with critical incident is frequently told in a beforeand-after format, in which the narrator’s sense of self alters at a moment of changed health status (Vanderford & Smith, 1996). Inevitably, the narrative turns to challenges brought on by disease or disability, revealing which circumstances, symptoms, and interactions are normal and which abnormal for the narrator. Usually disease and the resulting sickness contribute to changes in bodily appearance and function that may require difficult and radical changes in self-image and ways of living. Comparing his experience of enduring a heart attack with a later bout of prostate cancer, Frank (1991) observed, “During my heart problems I could no longer participate in certain activities; during cancer I felt I had no right to be among others. . . . Heart attacks are invisible on the body’s surface. To myself and to others, I looked no different. One wears cancer. My own visible stigmas were hair loss and my intravenous line” (p. 92). Another kind of challenge revealed through narrative analysis is the way in which illness alters relationships, an inherent dimension of identity. While renegotiation of relationship roles tends to be gradual, the impact can still be quite dramatic. In a study of men’s accounts of prostate cancer, Arrington (2000), focused on “sex talk”—stories men told in support groups about changes in their relationships with their wives that fundamentally challenged their role as sexual beings and intimate partners.8 In one example, a participant described the tension between him and his wife that his illness had caused: “He complained that the messages presented through the media suggested that sex goes on for one’s entire life, and he lamented that such was not always the case. He expressed frustration that women saw those messages and consequently expected a full lifetime of sex.” Based on research interviews with individuals suffering from a variety of chronic diseases, Charmaz (1995) described the process of adaptation to bodily limits and other illness-related losses as gradual accommodation and acceptance, “flow[ing] with the experience” (p. 657), although other possible reactions include ignoring, minimizing, resisting, reconciling, and embracing. Adaptation in this sense involves a close reexamination of one’s goals, expectations, and terms of self-acceptance. Therefore, illness narratives may convey personal identity both through repetitive patterns and changes in actions and 7 For an in-depth analysis of Reeve’s transformative illness narrative see Geist-Martin, Ray, & Sharf (2002), pp. 23–31. 8 Although Arrington does not label his method as “narrative,” characterizing it instead as grounded theory, the cancer patients accounts reveal their construction of themselves and their relationships with their wives by focusing on characters, actions, and motives.

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choices involving struggle, surrender, and accommodation to alterations in one’s capacities. Indeed, the self revealed during a serious illness may prove to be a complex mix of continuity and transformation. Not surprisingly, the storytelling process allows for various facets of one’s identity to be expressed. As Holstein and Gubrium (2000) pointed out, “narrative editing” allows the storyteller to shift perspectives, both as a way of incorporating complex adaptations and as a strategy for taking various listeners into account: “The storyteller, in effect, is an editor who constantly monitors, modifies, and revises themes and storylines . . . to attend to perspective and to the ways they expect their accounts to be heard” (p. 113). In Rose’s case, we can see two versions of identity, one emphasizing the healthy self and the other focused on the disabled self. Both versions are ways of coping with her varied needs and circumstances; her chosen anecdotes reflect a lifetime of having to accommodate to an ongoing health condition. Charmaz (1995) pointed out that some surgical procedures and medical regimens can result in “upward changes” (p. 668), including improvements in appearance, stamina, and possibly prognosis. Even positive changes in health inspire stories in which patients must redefine themselves. Brashers et al.’s (1999) study of HIV patients focused on the accounts of individuals who had experienced restored hope after protease inhibitor drugs had rescued them from a terminal prognosis. “Revival” required each HIV patients to change their identities to “a person living with a chronic illness rather than a person dying from a terminal illness.” Having already accepted their impending deaths, the narrators’ new circumstances included a change of social status and expectations, hence a need to renegotiate roles and identities. Just as they had earlier adjusted to the “sick role,” revival led the patients to resume seeing themselves as “workers” and to place a positive value on independence, self-sufficiency, responsibility and stability. Some of the best-told and most insightful illness narratives not only prove helpful in strengthening the teller’s capacity for dealing with illness-related problems but also awaken listeners or readers to issues that they may not have been aware of or that they are attempting to deal with in their own lives. One influential and long-enduring example is poet Audre Lorde’s journal (1980) following treatment for breast cancer. In one entry, she pondered the silence surrounding the experience of mastectomy that kept women from sharing their wisdom and fears with one another. Significantly, the crucible of a life-threatening illness experience can change people’s identities in ways they never would have imagined. For instance, Sullivan’s (1997) interviews with breast cancer patients helped transform these women into advocates for the health of future generations, turning their disease into a mission. Reflecting their discussions, the researcher described their collective and personal efforts to increase awareness and educate others about breast cancer. These women were concerned about future generations of women, especially their own daughters. They strongly advocated breast self-examination as a vital way to save lives. Other “ways to spread the word” included donating books to resource centers, participating in fundraising activities, and acting as local resource persons. Nora helped conduct a survey to determine possible causes for the high incidence of breast cancer in the area. . . . Two other women began their own health related businesses. (p. 47)

A final interesting aspect of narrative identity construction we wish to underscore is the ability of many narrators to apply essential personal resources and expertise to the illness experience in order to derive perceptive insights. For instance, sociologist Robert Murphy (1987) analyzed how others reacted to his degenerative paralysis as he labored to maintain his social and professional identities, and writer Reynolds Price (1994)

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incorporated original poetry into his account of learning to deal with the intense pain of a spinal cord tumor. Particularly refreshing is comedian Julia Sweeney’s account (1997) of living with her brother Mike, who was being treated for a terminal brain tumor, while she was simultaneously diagnosed with cervical cancer, turning her Hollywood bungalow into the “International House of Cancer.” And here is how she describes an evening in which Mike was extremely ill and nauseated: We got to the emergency room and they could see that Mike was really dehydrated. They wanted to get a saline solution into him right away, but the veins in his arms were all exhausted and so they were trying to get a needle in up over his ear. And he was continuing to throw up and I was standing in the doorway looking in on this. And, to just show you what a wonderfully dark sense of humor Mike had, in even the most horrific of circumstances, he turned to me and said, “I guess it’s not so funny now that you have cancer too, huh?” And I said, “Yeah, Mike. ‘Cause normally I’d be laughing my ass off.” (p. 121)

In the words of Kathy Charmaz (1995), “Adaptation to impairment takes people with serious chronic illness on an odyssey of self” (p. 675). The same is true for people undergoing other forms of suffering, and the process of narrating an illness experience can reveal a person’s essential character through the struggles to adapt, persist, and thrive. NARRATIVE AS WARRANTING DECISIONS

As mentioned previously, Rose does not consider her illness the defining characteristic of her life. This is not to say that having lived with myasthenias gravis hasn’t deeply affected certain life choices. In fact, Rose has decided to continue with graduate education that will lead to a career as a counseling psychologist, working specifically with children with disabilities and their families. In this very important matter, her illness has shaped her future life story in a direction that she feels is positive—both personally rewarding and of social value. “I want to advocate for others so they won’t have to deal with the same problems I’ve had.” Still, she routinely makes choices about health-related disclosures, deciding what is necessary to say to friends, professors, and people she dates and when it is appropriate to raise these issues. One decision that has been especially significant for her is selecting situations in which she will use a wheelchair. Because she often needs to lean on a friend or family member due to sudden feelings of weakness, she has frequently been mistaken for being drunk. Dr. Harvey dissuaded her from using a wheelchair during high school even though school officials had wanted her to do so. Thus far she has chosen to use a motorized cart on three visits to the Disney World theme park, where her close friend works. Although she is used to being attuned to sudden bouts of fatigue and weakness that necessitate rest and changes in medication, she realized on her first visit that she would not be able to cope in her usual ways with the immense distances and dense crowds in the park. The motorized cart enabled her to maneuver and truly enjoy Disney World. During a visit to New York City, however, she elected not to use a wheelchair. She found herself having to stop and rest constantly, reduced to being a burden to the friends she was visiting and treated like a nonperson by people who didn’t know her well. In the end, she concluded she would have been better off in a wheelchair despite the social stigma it bestows. Nonetheless, making use of a wheelchair changes the nature of her hidden disability; her identity suddenly becomes one of a publicly acknowledged disabled person. This is a

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difficult shift, and because she doesn’t define herself as part of the “disabled community,” she says she has the feeling of being an “imposter” when she makes use of a motorized chair. Perhaps this feeling is increased by the reactions and assumptions made by others about people who use wheelchairs (Cahill & Eggleston, 1995). The complexities and contradictions of integrating the use of a wheelchair into her life are still in the process of being developed and understood within her ongoing story of experiencing illness. Narratives reveal the storyteller’s values or reasons for actions, including routine activities as well as those involved in medical decision making (Vanderford & Smith, 1996). Charmaz (1999) calls stories of suffering “moral parables of right and wrong, of moral virtue and moral flow, of reason and rationalization” (p. 367; see also Bochner, 1998). The inherently moral function that she refers to includes making judgments about desirable and undesirable behaviors, describing appropriate and inappropriate relationships and roles, and implying desired transformations. In telling about their experiences of sickness, narrators are able to position themselves so as to portray character and actions taken within the plotline. Narrative chronology may place the locus of one’s decision making on past events, current demands, or future consequences. The retrospective stance of the narrator allows for ethical reflection; “the temporal gap between one’s actions and the telling allows the narrator to assume a distance about his or her actions as narrated in the story, which creates a space for recognizing actions as ‘good’ or ‘bad,’ ‘better’ or ‘worse.’ This space provides the reflective ground for change” (Churchill & Churchill, 1982, p. 74). In this example taken from a discussion within a prostate cancer support group, one participant reveals the motives behind his treatment decision: “That is what my physician told me [that radiation had fewer side effects]. So I opted on the radiation, uh, because, uh, it seemed like that would have less effect upon, uh, the sex life, uh, than an operation, which, uh, I had heard anyway, that the changes that, of losing your ability to have sex was much greater than just by radiation. So I went through the radiation starting in October of 1995.” (Arrington, 2000) Accounts of chronic illness and suffering describe conflicts and explain problems, including the difference between the way things were in the story and the way the storyteller desired them to be. They disclose a storyteller’s attitudes and judgments about events, actions, people, motives, types of relationships, and goals. As a result, stories reveal (implicitly or explicitly) the way the teller thinks the world ought to operate. One HIV patient’s conclusion to a story about his treatment in a V.A. hospital provides a clear example: “I won’t ever come back here. I won’t come back here because I’m not an animal and I don’t behave like an animal. . . . They . . . did nothing to build and boost my esteem and help me deal with the problem of being HIV positive” (Vanderford et al., 1992, p. 134). Just below the surface of complaint, the patient’s emphasis on the values of human dignity and compassion is easy to see. One person’s story frequently has a salutary impact on another’s decision. In a study (Sharf, 1997) of people participating in an online breast cancer listserv, the husband of a woman with early-stage breast cancer asked about the advisability of her becoming pregnant.9 Several women replied with stories revealing their own struggles with this perplexing question, including this response, which detailed the narrator’s attempt to weigh pros and cons (unfortunately, after finally deciding to become pregnant, she miscarried): 9

Clinical studies are not consistent as to whether the increased estrogen levels that accompany pregnancy encourages growth of malignant tumors, and if so, under what conditions. Many women with breast cancer have successfully given birth without tumor recurrence.

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I’m posting to the list in hopes my personal experience is helpful. This is an issue I have been struggling with since I was diagnosed 7 yrs ago. . . . After the miscarriage I worried a lot about whether I’d increased my risk of new breast cancer—those worries have subsided at this point. . . . My best wishes to you and your wife, whatever you decide. (p. 75)

When more than one person is involved in the health care decision-making process, then the issue of co-constructing or overlapping stories frequently comes to the fore. Earlier we referred to the dichotomy that often arises between the voice of medicine and the voice of the lifeworld. Thus, in medical consultations, a negotiated story that interweaves elements of both the patient’s and the practitioner’s distinct narratives is sometimes needed in order to arrive at a care management plan acceptable to both parties (Sharf, 1990). In a different context, sociologist Carolyn Ellis (1995) tells the painful story of her becoming the primary caretaker of Gene, her life partner, who was dying from emphysema. Over several years’ duration, their versions of Gene’s course of illness variously melded and differed as to severity, burdens and responsibilities, and ways of coping. Toward the end of Gene’s life, Carolyn’s story was colored by thoughts of what it would mean to be a survivor, while Gene struggled with impending death. Through very open conversations, both had to come to agreement on whether to use a respirator as a treatment of last resort, since Carolyn would almost surely be the surrogate decision-maker for Gene when the disease prevented him from thinking and speaking coherently. This process of co-constructing a narrative among family members that incorporates a person’s advance directive in the event of life-threatening illness is perhaps one of our most difficult communication challenges. Ultimately, “decisions about health are based on the meaning patients give to symptoms and experiences with disease and their physicians. Narratives function to justify decisions already made and determine future decisions” (Vanderford & Smith, 1996, p. 23, citing Fisher, 1985). Understanding a patient’s story is key to understanding his or her decisions. NARRATIVE FOR BUILDING COMMUNITY

Rose doesn’t particularly identify with the disabilities activists in her community. From her perspective, they seem to make their disabilities the centerpiece of their lives, something she has tried not to do. She’d prefer not to be “lumped into a group.” Her sense of community will be fulfilled from the counseling work with disabled children she has chosen to do. It’s not likely that she will see much public attention given to her particular disability-related problems since myasthenias gravis affects a relatively small number of people, nor are there any mass media images with which she identifies directly. In her youth, the television show that made the biggest impression upon her was Life Goes On, a program that featured a family whose members included a young man with Down’s syndrome played by an actor with Down’s syndrome. Both the fictional character and the real actor proved themselves to be attractive people with capabilities that surprised and pleased the viewing audience. Rose feels that the more the public is exposed to nonstereotypical depictions of illness and disability, the better the chance of acceptance and understanding. So far, we have discussed illness narratives primarily as individual stories of sickness that serve multiple functions for the teller and sometimes have the power to influence others as well. We have also alluded to the co-construction of illness narratives as an important aspect of the interaction between patients and clinicians. Communication theorist Ernest Bormann (1985) conceptualized the interactional ways in which multiple individuals or

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organized groups are attracted to and build upon stories (what he calls fantasy themes), leading to the development of rhetorical visions that provide common histories, coherent depictions of current reality, and desires for the way the world should be. He calls this process—in which stories cohere and build upon each other-symbolic convergence. Applying the theory of symbolic convergence to health-related situations, we assert that narratives serve a communal function in at least three ways: by helping disparate individuals with common maladies provide support to one another, by raising public awareness about specific issues inherent in experiences of illness, and by serving as highly recognizable discourses for advocacy. In this section, we discuss these three aspects of how stories told in group and public formats help to solidify health-based communities. Illness-defined organizations such as face-to-face support groups and online chat groups and listservs share a socially constructed reality shaped by commonly expressed interests, rules of operation, and vocabulary. Communities like these serve the communicative and social functions of enabling members to access a wider range of information than one person is apt to have; giving attention to socioemotional needs and coping skills; and empowering participants to participate in medical decision making, political activist events, and related matters (Sharf, 1997). This occurs largely through discussion generated by the sharing of individuals’ stories of experience. The aforementioned analysis of a support group for individuals diagnosed with epilepsy illustrates how this kind of group discourse changed the way members viewed themselves and their disease. Participants encouraged one another to tell stories in which their disease did not stigmatize them: The narrative mode of communication can provide an opportunity for self-help members to develop a functional language for talking about themselves. . . . Many members described themselves in stigmatizing and helpless words: epileptic, out of control, an embarrassment, depressed, unattractive, and so on. The Chicago self-help group that we observed and taped did not allow members to describe themselves as being epileptic. Victim narratives were also not well received after a while. (Arntson & Droge, 1987, p. 162)

Adelman and Frey’s (1997) ethnographic analysis of Bonaventure House, a residential facility for people with AIDS, is a richly detailed case study of an illness-based community. Because of the particular necessities inherent in this living situation, modes of storytelling evolved that helped to initiate incoming members and to prepare established residents for the deaths of others; create private boundaries and cooperation within a limited physical space; and balance a sense of normalcy with ongoing loss and crisis. Of particular interest are the symbolic strategies used to positively reframe grief and fear with celebration and continuity. These rely heavily on rituals, tokens, and stories of departed residents that help to sustain, both spiritually and materially, those currently coping with the problems of the disease. The sense of community emanating from ongoing support groups and residential organizations is focused on participants who choose to identify with the goals and activities of those groups. Community building may also be assisted through popular dramatizations that serve as outreach to people who might otherwise never perceive themselves as identified with a common set of health concerns. There are any number of excellent examples of media portrayals that raise public consciousness about the difficulties of living with serious and/or chronic disease. Singhal and Roger’s (2000) analyses of “entertainmenteducation” focused on how health prevention topics such as safe sex, family planning, and other lifestyle behaviors are dealt with on soap operas and other types of televised entertainment programs. In fact, entertainment television can be seen as an important element of planned health promotion campaigns. Less scholarly attention has been given to

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television dramas (and occasionally comedies) and films featuring problematic narratives of illness, such as a young mother’s lengthy struggle to remain connected with her husband, children, and friends as she coped with life-threatening ovarian cancer on thirtysomething (Sharf & Freimuth, 1993); actor Tom Hank’s portrayal of a lawyer with AIDS battling job discrimination in Philadelphia; crusty NYPD Blue detective Andy Sipowicz’s fear of submitting to treatment for prostate cancer (Arrington, 2000); and professor Morrie Schwartz’s lessons on coming to grips with terminal illness and the orchestration of a good death.10 Although entertainment-education about health issues is generally treated as the province of the electronic mass media, ethnographer and performance studies scholar Dwight Conquergood (1988) provides an example of using live performance for similar purposes. While serving as a public health officer in a Hmong refugee camp in Thailand, Conquergood organized a theatrical presentation using the refugees’ mythologies and cultural stories, along with newly-developed characters, to convey messages about how to maintain sanitary conditions in the crowded campground, so different from the environment these people had lived in previously. Entertainment-educational efforts include teaching audiences about diagnoses, symptoms, and treatments about which they may not have been aware; considering good and poor role-modeling behaviors in approaching problems related to illness; and initiating talk among family and friends on previously ignored or repressed topics (Sharf, Freimuth, Greenspon, & Plotnick, 1996). In a sense, the engaged audience becomes a community of learners, hopefully better prepared to think about and act upon similar episodes in their own lives. A third way in which narratives help to form the foundation of an illness-related community is in the service of various forms of advocacy, especially to raise funds and change policy (Sharf, 2001). Personal stories of lived experiences of illness told by admired celebrities have helped to rivet public and political attention to an unprecedented degree. Notable examples include actor Christopher Reeve’s speech at the 1996 Democratic presidential convention and his appearances in front of other audiences on behalf of spinal cord injury research and Michael J. Fox’s testimony to Congress in support of funding for Parkinson’s disease research. Equally effective are strategies to bring the narratives of suffering and courage of ordinary people to our attention. One of the best-known and affecting works of this kind is the AIDS quilt, whose immense expanse of personallydedicated patchwork pieces poignantly reminds spectators of the human toll of this health problem.11 The National Breast Cancer Coalition has widely disseminated its “Faces of Breast Cancer” exhibit in a variety of venues, including museums, shopping malls, and scientific conferences. The exhibit comprises photographs of women from each of the 50 states who have died from breast cancer, along with brief narratives describing their contributions to family and community. Participants in the various versions of the Race for the Cure participate and wear T-shirts in memory of loved ones who did not survive their fight with this disease. In each of the examples, the accumulation of personal stories serves a similar purpose—to illustrate the extent and proximity of the problem in a way that generalized statistics cannot.

10 Tuesdays with Morrie eventually appeared as a best-selling book (Albom, 1997), a series of interviews with Ted Koppel on Nightline, and a televised, feature-length movie. 11 The availability of effective new generations of drugs to combat HIV in the United States have quickly changed the social construction of AIDS from a certain killer to a problematic but chronic disease. In the meantime, the devastation of lives from AIDS in the resource-poor African continent continues at an alarming rate, largely out of view from the American public. Perhaps an international version of the quilt needs to be produced and exhibited.

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SOCIAL CONSTRUCTION OF HEALTH SCHOLARSHIP: TO BE CONTINUED

This review of the social construction perspective in health communication scholarship has highlighted the rhetorical origins of the tension between the physical world and symbolic representation, and the application of this approach to communication issues related to health and illness. Although narrative inquiry is only one of many ways of approaching health communication research, its benefits lie in the application of knowledge related to the meanings that individuals like Rose and others that we have quoted, paraphrased, and described here create out of health and illness. The voice of the patient, so often absent in clinical research, is now heard more often because of the emphasis that health communication as a field of inquiry has given to it. The construction of personal stories of suffering is useful to the individual dealing with serious and/or chronic sickness by allowing the individual to make sense of a situation that may at first seem to have no discernible explanation; assert control over what feels like a chaotic set of circumstances; document the transformations in identity spawned by the illness experience; and identify reasons for making decisions related to treatment, adaptation, and coping. The sharing of illness narratives contributes to the formation of community, be it for purposes of public education, social support, or political advocacy. Although we cannot forecast in what directions health communication studies using a social construction approach will develop, clearly this kind of scholarship, once rare, is now accumulating with increasing frequency. We would like to conclude with a few guidelines that we think can help maximize the utility and influence of the social construction approach:

r r r

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Contextualize discourse. Whether it be historical, social and/or cultural, the context in which the discourse under investigation emerges and is articulated is critical to interpreting its meaning. Social construction emphasizes the connectedness of context and significance. Identify contrasting perspectives. When there is more than one account of reality among key participants in the situation being studied, key points of divergence and commonality should be identified and explored. Incorporate cultural sensitivity. Our understanding of cultural differences as they are manifested in narrative content and styles of storytelling is limited. Awareness of actual distinctions is increasingly important in both clinical and public health contexts as populations continue to diversify and cross-cultural communication becomes at once more prevalent and more problematic. Reveal what is rhetorical. Social construction analysis should be concerned with how language and other forms of symbolization both shape and reflect people’s shared perceptions of reality. In health communication research, the Health promotion messages (along with the public’s response to these) and health policy are particularly important to explore from a rhetorical vantage point.12

12 For example, see Kimberly Kline’s rhetorical analysis (1999) of breast self-examination campaigns, which in part supports the criticism of women’s health activists that these messages detract from perceptions of agency and efficacy in the early detection of breast cancer. Rather than simply dismiss these campaigns, she suggests specific ways in which they can be improved so that women audiences feel empowered and health promotional behavior is encouraged at the same time.

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r

r

Be alert to the clinical implications of personal narrative. Social construction analysis should strive to clarify how patient narratives are understood by and responded to by clinicians; how the communication of narratives (by or about patients) affects the quality of clinical care; and how sharing of illness-related narratives impacts patient empowerment, participation, and decision making. Recognize the tension between emancipation and appropriation of voice. It has been argued that scholarship that helps to break the silence about experiences labeled as vulnerable or shameful are acts of social justice, insofar as the telling of stories enables self-knowledge, promotes healing, and encourages societal change (Varallo, Ray, & Ellis, 1998).13 Still, the liberating effects of providing a platform for the public telling of powerful personal stories must be tempered with the realization that the same process of scholarship is necessarily one that edits and punctuates those narratives so that they become supporting evidence for the researcher’s own arguments and point of view. The use of others’ stories in the service of one’s own research leads anthropologist Susan Estroff (1995) to ask, “Whose story is it anyway?”

Finally, we will conclude by underscoring the insight of communication scholar Arthur Bochner (1998), who reminds us that narrative inquiry is at its core a moral activity, one that is purposely and self-consciously entwined with the values of narrator and characters and is always personal, whether it be a matter of telling our own stories or “thinking with” (p. 349), resonating with, another’s story, inevitably from the framework of our own lives. As we “listen” to Rose’s story, her voiced struggle to make moral choices throughout her young life seems palpable. Though the situations impelled by her particular illness may seem rare, her ongoing quest to manage her identity with a sense of empowerment in the face of physical and social adversities is one with which many of us can identify. Even though I need the assistance of others sometimes, I don’t like to be treated as fragile. . . . Control is a big issue for me. I conserve my energies and know my limits. And I like doing things that help others; it helps my sense of self-esteem. . . . My illness has given me good things. It’s made me really self-aware—things I like and don’t like about myself. It helps me to empathize with others. —Rose, at age 22

ACKNOWLEDGMENT

The authors wish to thank “Rose” for agreeing to share her narrative through a series of interviews conducted for purposes of this chapter. REFERENCES Adelman, M. B., & Frey, L. R. (1997). The fragile community: Living together with AIDS. Mahwah, NJ: Lawrence Erlbaum Associates. Ahmed, P. I., Kolker, A., & Coelho, G. V. (1979). Toward a new definition of health: An overview. In P. I. Ahmed & G. V. Coelho (Eds.), Toward a new definition of health: Psychosocial dimensions (pp. 7–22). NY: Plenum. Albom, M. (1997). Tuesdays with Morrie: An old man, a young man, and life’s greatest lesson. New York: Doubleday. 13 The assertion of narrative-based research as social justice stems from the authors’ interviews with incest survivors.

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3 Theorizing About Health Communication Austin S. Babrow and Marifran Mattson Purdue University

PRELIMINARY CONSIDERATIONS

This chapter, like communication on any topic, necessarily reflects a universe of assumptions that must remain, like the physical universe, largely unexplored. Still, it will be useful to examine our main assumptions before pushing too far with our examination of the topic. If nothing else, looking at these will provide a useful general reminder of the limits of any one essay. It will also protect against overly ambitious aspirations or claims and foster subsequent alternative investigations. For these reasons, we will begin with the general considerations that have guided our more specific thinking on theory and theorizing in health communication scholarship. Health communication studies frequently draw on and seek to inform communication scholarship in general. Hence, these studies necessarily reflect currents within the broader field. In the encompassing field, there are reasoned and often passionate calls for both greater unification and greater diversification (e.g., Dervin, Grossberg, O’Keefe, & Wartella, 1989a, 1989b; Levy & Gurevitch, 1993a, 1993b). We believe that the calls for greater unity and diversity represent a basic dialectical tension (Babrow, 1993; Craig, 1999). There are other such tensions in this debate. Hence, we will adopt a dialectical stance at many points in this chapter. In short, we believe there is meaning and value in both the unification and the diversification of communication scholarship. Moreover, we believe that creative efforts to engage with these seemingly antithetical (cl)aims can add significantly to communication research in general and health communication scholarship in particular. Hence, we will try to represent the impulse toward unifying perspectives and also the argument for differentiation and diversification.

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The chapter begins with a discussion of the nature of health communication theory. Among other things, it provides a definition of theory and explores the relationship between theory and practice. The essay next considers the nature of health communication by elucidating what we believe to be four of its distinguishing features. The chapter then reviews various schemes for differentiating types of health communication theory. Finally, we use one such scheme, Craig’s (1999) communication-centered framework, to sketch (a) selected connections between theoretical traditions and the distinguishing features of health communication and (b) practical implications of each form of theorizing. THE NATURE OF HEALTH COMMUNICATION THEORY Defining Theory

Not only is there no broadly acceptable definition of theory, it is tempting to conclude that it would be both impossible and undesirable to construct such a definition. Still, in composing a chapter about theory and theorizing, we are necessarily guided by some more or less comprehensible general conception of our subject. We would rather make our working conception explicit than compose it as an acrostic. According to our conception, a theory is a consciously elaborated, justified, and uncertain understanding. This definition is intentionally much broader than some appear to desire (e.g., Berger, 1991; cf. Craig, 1993; Proctor, 1992; Purcell, 1992), but we believe it is not so broad as to be meaningless. It emphasizes several issues that we think are crucial to understanding the nature of theory. A theory is, at base, an understanding. It can be an understanding of what the theorist believes to be a concrete object that exists independently of human conception. Alternatively, the “object” of a theory may be thought of as a product of human conception, or it may be some hybrid or variant of these extremes. However, theoretical understandings differ from what are probably our most common understandings—the tacit formulations that guide us unawares and are frequently difficult if not impossible to access consciously. For example, any competent speaker can generate an infinite number of grammatically correct sentences, perform countless speech acts, manage turn-taking and topic selection within conversation, and understand profoundly ambiguous utterances with relative ease and without conscious awareness or understanding of the underlying structures, processes, and dynamics that make these remarkable achievements possible. By contrast, theories of generative grammar, speech acts, turn-taking, topic selection, and interpretation are consciously constructed understandings. Conscious understandings can be as simple as a single proposition (e.g., the media promote unhealthy body images; nurses are more in touch with the whole patient than are doctors), but a theory is an elaborated understanding involving a number of concepts and suppositions about their interrelationships (cf. Anderson, 1996; Littlejohn, 2002; Reynolds, 1971).1 In addition, the consciously elaborated understandings that merit being 1 Some scholars, particularly some social scientists, attempt to differentiate “a sense of understanding” from “explanation” (Singleton & Straits, 1999). For instance, explanation is thought to take the form of a simple deductive argument connecting some antecedent to some consequent (or a chain of antecedents and consequents), whereas a sense of understanding involves something deeper, usually the description of an underlying causal process (see Reynolds, 1971). The distinction is troublesome for various reasons. For instance, it sets up a potentially infinite and futile regress; one can push the inquiry ever further, requiring ever more basic causal processes to explain the ostensible connections at higher levels of explanation or understanding. At some

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called theories are justified but uncertain. What we mean by this is that a theory emerges from processes and practices of sense-making; these may be empirical, interpretive, critical, or otherwise (see Bochner, 1985; Miller, 2002; see section below). In any case, theoretical sense-making processes and practices not only construct understandings but justify belief in or perception of the reasonableness of the emerging, elaborated constructions. Depending on the nature of the theory (i.e., its metatheoretical commitments; see section below), there may be some effort to distinguish between its substance and its justification. For instance, some empiricists claim to maintain a strict separation between theory and data. Alternatively, one may see theoretical constructions and their justifications as inextricably intertwined, as in interpretive theory (see Anderson, 1996). We believe it is essential to emphasize that a theory is a justified understanding; even (and perhaps especially) empiricists who aim for a strict separation of theory and justification are utterly disinterested in (empirically) unjustified understandings. For these reasons, some have argued that theorizing is a rhetorical (argumentative, persuasive) enterprise. In other words, theorizing is seen by some as an inherently communicative process by which we attempt to formulate a consciously elaborated and justified understanding of the world (Anderson, 1996; Craig, 1999; K. Miller, personal communication, April 26, 2001). Finally, a theory is a fundamentally uncertain understanding. The uncertainty may be thought to reflect the nature of the world we are attempting to theorize about, which we might call ontological uncertainty, or it may be rooted in the nature of how we come to know, which we might call epistemological uncertainty (Babrow, 2001). In any case, for people interested in consciously elaborated understanding of the world, uncertainty necessitates justification (for brief sketches of contrasting views, see Babrow, 2001; Bradac, 2001). This in turn makes theory integral to a wide range of intellectual enterprises. Theory and Practice

It is tempting to assert that health communication scholarship is first and foremost about concrete practices in the world, but what does this mean? For some, it means that health communication scholarship must emphasize doing over theorizing (Clift, 1997; Nzyuko, 1996; Witte, 1996). The handiest counter to this view is Kurt Lewin’s contention that there is nothing so practical as a good theory. But a less radical stance, one that is not squarely contradicted by Lewin’s dictum, is that health communication theory is meaningless if it does not influence practices related to health and illness (also see Craig, 1989, 1999). Several points seem highly relevant to this stance. One is that claims about the influence of theory on health practices are limited in the sense that, although we can make judgments about the past or present practical value of any particular theory (i.e., its influence on practice), these practices and judgments do not necessarily anticipate the theory’s value in the future. Slavish devotion to past or present utility is an inherently conservative posture. A second important issue is that the foregoing consideration must not be taken as licence to pursue a theory without thought about its potential future impact on practice. Our inability to anticipate future uses of a theory does not mean that “anything goes.” On the contrary, there is no reason to think that a theory is used only for good or it is disused. Theoretical applications also can be harmful. For instance, unreflective applications of various point one might question whether one is moving away from rather than closer to a sense of understanding, particularly when processes at multiple levels interpenetrate in complex ways (see Babrow, 1993, 1998). Moreover, much communication scholarship is directed at events in which causal analysis is problematic— events characterized as indeterminate, undetermined, or underdetermined (Anderson, 1996).

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forms of uncertainty reduction theories can endanger health. More specifically, many efforts to promote health screening are based on theories that take uncertainty reduction as the main reason for health screening and as the main avenue for promoting such screening. That is, they assume that the main motive leading to and outcome of participation in health screening is the reduction of uncertainty about one’s health status. Promotional efforts based on this assumption may obscure more complex motives and trample on the concerns of those engaging in these procedures. For instance, Babrow and Kline (2000) argued that single-minded applications of uncertainty reduction theories to promote breast self-exam probably disempower women in various ways and thereby threaten their health. In short, theoretical applications can turn out badly. That we cannot anticipate the future with certainty does not absolve us from the responsibility for careful, critical, searching reflection on potentialities as well as critique of current and past practices. A third issue is that, whatever claims we might make about the usefulness of a health communication theory, they depend on some set of values. Anderson (1996, chap. 8) described several different conceptions of the appropriate values or aims of theory. These include the objectivist position that the only value in science is context-free truth; various cultural and critical theories that advocate self-consciously political or economic values; and hermeneutics, which opens up a world of infinite possibilities for context-appropriate values. Hence, judgments of value, practical or otherwise, must be made with great care and an awareness of their inescapable parochialism. As for the relationship between theory and practice, Thayer (1982) asserts that, in its earliest usages, the term theory applied to the description of actual practices: The original Greek notion of theory was straightforward enough: If you wanted to write down a theory of something, you would locate a person who could do that something better than anyone else, and write down how that person did it. But the later Greeks, out of their concern to distinguish the educated from the working classes, separated the head from the hand. We’ve been stuck with the consequences ever since. (p. 21)

Thus, the dualism of “theory” versus “practice.” With Thayer and others (e.g., Craig, 1989, 1999), we believe that this dualism need not hobble us. Communication theory should be about the practical problems of being human: The human relevance of a theory of communication lies in what understandings it may help us to gain of the inextricable relationship between communication and human nature, of the consequences of how we communicate for the human condition. Anything less is not a theory of human communication, but merely reflects a “theory” of how to get on in the academic establishment. (Thayer, 1982, p. 27)

Ultimately, in keeping with our understanding of the preceding, we believe that concerns about the contributions of health communication theory to practice have little to do with the nature of theory and more to do with the activities of theorists who fail to complete the circle in which theory and practice interpenetrate. One final issue worth considering at this juncture is directly related to the necessity of closing the circle of theory and practice. We wish to note Bateson’s (1972) dictum that the map is not the territory. No theory will ever be anything but an incomplete map, one of perhaps an infinite number of renderings of its domain. Whether we are materialists or idealists (see Anderson, 1996, chap. 2), we must beware the inclination to mistake our

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representations for whatever it is that we wish to represent; we must be open to the world beyond our current conceptions. With this caution in mind, we turn to our map of health communication theory. CHARACTERIZING HEALTH COMMUNICATION THEORY Points of Contention

Given our definition of theory, what is health communication theory? This question gives rise to knotty issues, most notably the difficulty of defining both health and communication (Kreps & Thornton, 1992; Pettegrew & Logan, 1987; Ratzan, Payne, & Bishop, 1996; also see definitions by Clift & Freimuth, 1995; Rogers, 1996; Sharf, 1993). We take a different approach to this issue. As noted earlier, since health communication scholarship is informed by and seeks to inform the broader field of communication, the former necessarily reflects currents within the latter. Hence, it is no surprise that the same criticisms that have preoccupied the broader field—its disciplinary status, its legitimacy, its distinctiveness, and so on—also appear in discussions of health communication scholarship (Berger, 1991; Burgoon, 1995; Cassata, 1980; cf. Nussbaum, 1989; Smith, 1989). Because these topics have been aired elsewhere, we will not revisit all of them here. Rather, we will note perhaps the most significant criticism: the contention that much of what passes as health communication theory could be subsumed within interpersonal and mass communication scholarship (Berger, 1991). Whereas other chapters in this handbook belie Berger’s judgment of the past accomplishments of health communication scholarship, we wish to offer a different sort of response and from it derive a view of the nature of health communication theory. As Craig (1989, 1999) has argued, communication scholars have long struggled with the tension between theory and practice, with the latter having been perhaps the driving wheel. We contend that health and illness make up the most elemental realm in which to study the nature and importance of communication: Communication in health and illness constitutes the most vital of human experiences. No other human phenomenon is more elemental than health and illness, none connects us more viscerally with our aspirations, or confronts us more palpably with our limitations. Moreover, given the dynamics of these elemental experiences, and especially given that they are constituted in the communicative interweaving of body, mind, and society, health communication represents among the most complex, challenging, and potentially rewarding areas for scholarly inquiry. (Brashers & Babrow, 1996, p. 243)

If anything is surprising, it is that it has taken so long for health communication to emerge as a central concern of the field. It is also surprising that the emergence of health communication scholarship has encountered any resistance at all. This resistance is best understood as an example of the gratuitous criticism that follows many emerging specialty and hybrid fields of study. Unifying Themes and Tensions

The important question to ask is not whether health communication constitutes a distinctive content domain or context for theory development. Rather, we must ask, What about health communication is distinctive? Clearly there are commonalities in basic communication

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processes across domains. For example, regardless of context, nonverbal displays of emotion and the constitutive rules of speech acts will be much the same. As another illustration, whether the content involves politics, health, or other matters of social concern, the media will set the public agenda; the media shape our sense of what is important to think about and legitimize some ways of thinking while delegitimizing others by selective attention and ways of framing issues. But distinctive features of communication about health and illness warrant focused attention for the same reasons that specializations emerge in fields such as biology, chemistry, history, or literature and that hybrid fields such as biochemistry, cognitive science, and cultural studies are developed. Each specialty or hybrid field is uniquely positioned to illuminate its subject matter. Each offers unprecedented opportunities for cross-fertilization with other specialty or hybrid fields as well as with the source disciplines. In short, focused study of health communication will more efficiently and effectively reveal its distinctive character than will general studies of interpersonal or mass communication. What then are the distinguishing features of health communication? We believe that four characteristic tensions mark health communication as an especially significant form. Interplay of the Body and Communication. Health communication is significant for the pronounced and profound tensions and interplay between the realms of communication and the body. Zook’s (1994) discussion of the biopsychosocial turn notes two aspects of this interplay: “the material existence of biochemical pathways between mind and body, and the effect of psychological, social, and cultural variables on personal health behaviors” (p. 354). As a powerful example of the former, Melzack’s (1999; Loeser & Melzack, 1999) neuromatrix theory of pain suggests that communication processes and practices, along with a variety of other inputs, shape the neural network that produces sensations of pain. But the distinction between the “direct pathways” and the presumably indirect influences of communicative practices on the body and health behavior are difficult to sustain upon reflection (also see Zook, 1994). Physical dis-ease shapes communication, from a pointed cry of pain to grumbling complaints and from information and diagnosis seeking to support seeking. In turn, these communication acts and processes influence bodily states (e.g., relief, generalized or specific distress; see Lazarus, 1991, chap. 10), which in turn influence communication, and so on. Moreover, these specific and local experiences of the interplay of communication and the body are shaped by powerful social and cultural forces influencing individuals’ behavior (Blum, 1981). Communities form individuals’ behavior symbolically and tangibly (Allen & Allen, 1987). As agents of the dominant culture, communities transmit values and norms that symbolically circumscribe some behavioral choices and encourage others. As systems of exchange and influence relationships, communities establish opportunities for people to behave in some ways, but not in others. (Finnegan & Viswanath, 1990, p. 20)

Hence, the communicative interweaving of bodily sensation, cognitive-emotional sensemaking, and various layers of social structures and practices fabricate the social meaning of physical states and the physical meaning of social states. The interplay of body and communication is powerfully illustrated in the processes by which physical sensations and diseases are conceptualized and labeled. For example, cultural variations in the language we use to talk about our bodily states are revealing

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(Zborowski, 1969). Culture shapes how we label our physical states, and clearly we react to and treat ailments differently depending on how they are labeled. Hence the dilemma noted in Cassell’s (1985) landmark work on physician-patient talk: “How do doctors ever make a diagnosis? How can we distinguish between a ‘terrible’ (Jewish) pain and an ‘annoying’ (Irish) pain?” (pp. 53–54). Obviously, then, the interplay of language and bodily sensations shapes the experience of illness; these interactions are themselves shaped by historically bound sociocultural constraints. Studies of metaphor also reveal the interplay of body and communication. For instance, consider analyses of metaphor in domains such as cancer (Sontag, 1978), AIDS (Sontag, 1989), the immune system (Martin, 1994), and death and dying (Ross & Pollio, 1991). Such work reveals that figurative conceptualizations of the body and bodily processes such as disease and dying shape understanding, attitudes (e.g., stigmatization), and social action. In a curious turn, Sontag’s (1978, p. 3) analysis of the role of metaphorical conceptualizations of illness led her to “call for a kind of linguistic cleansing of medical and lay attitudes toward disease such that the true biological core of disease can be apprehended and distinguished from its metaphorical extensions” (Aronowitz, 1998, p. 13). Sontag’s desired goal is curious because medical historians have demonstrated repeatedly the difficulty of apprehending “the biological core of disease unadulterated by attitudes, beliefs, and social conditions” (Aronowitz, 1998, p. 13). Indeed, our labels and conceptualizations of disease are continually reconfigured by developments in social attitudes (e.g., homosexuality and a host of women’s conditions), diagnostic tests, and treatments. For instance, Aronowitz (1998) discusses the increasing number of new diseases rendered discoverable by our advanced technological capacity. For example, we can now observe individual differences in serum cholesterol levels and continuous electrocardiographic monitoring that can lead to diagnoses such as hypercholesterolemia and silent cardiac ischemia, “diseases” that have no corresponding phenomenological basis until a patient is found or “constructed” by screening tests. Similarly, the expanding knowledge of the human genome will undoubtedly lead to the “construction” of new diseases based on correlations between individual genetic variation and clinical states. What configuration of nonbiological factors explains the appearance of such diseases at a particular moment in time? In whose interest is it to view diseases as legitimate? What is the effect of a new label on the patient and the doctor-patient encounter? These questions remain at the center of medical practice. (pp. 37–38)

Clearly, these questions should be at the center of communication theory and research (also see Brashers, 2001). They apply not only to the communicative processes that articulate the meaning of new tests but also to those that shape the meaning of new treatments. For example, new drugs affect not only bodily states but also disease categories and therefore our understanding of emotional and physical health. Frequently, and not surprisingly, these changes are the focus of substantial debates, which in turn shape disease categories, uses of these new drugs, and the bodies made possible by the social, cultural, and historical moment. These phenomena are powerfully illustrated in the ways that psychoactive drugs have reconfigured conceptions of mental illnesses and treatment and in debates about these drugs, their uses, and their effects on conceptions of illness and health care (e.g., Breggin, 1991; Breggin & Breggin, 1994; Kramer, 1993; Luhrmann, 2000; Valenstein, 1998).

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Hence, in many ways, health communication is significant for the pronounced and profound interplay of the body and communication. Theories of health communication ought to at least recognize this interplay. Those that emphasize it have the potential to illuminate one of the key distinguishing characteristics of health communication. Science and Humanism. A second distinctive characteristic of health communication is the pronounced tension between scientific and humanistic assumptions, values, aspirations, and limitations. What we have in mind here are the sometimes discordant interests people have in the power and potentialities of science and the desire to recognize and actualize our humanity. This tension has many manifestations. It is evident in debates about biomedical versus biopsychosocial models, disease versus illness, technique versus meaning, and “alternative” versus “traditional” therapies as well as in disputes within medical ethics. For instance, not only do biopsychosocial models (Engel, 1977) recognize the interplay between the body and communication, debate between their advocates and the adherents of biomedical models exemplifies tensions between the traditional scientific imperatives of materialism and reductionism and efforts to understand the significance of mental or ideational human realities (see Anderson, 1996, chap. 2). In saying this, we do not mean to equate humanistic and biopsychosocial models, for the latter can be thought of as scientific. Rather, we mean to say that this approach, more so than traditional biomedical health care, attempts to recognize the human meanings of disease. A poignant illustration of the contrast and tensions between scientific and humanistic orientations is found in contemporary attitudes and practices related to death and dying (see Ari`es, 1981). In the United States, changes in nutrition, sanitation, engineering safety, and medical technology have caused a shift in the nature of our dying. Death, rather than occurring shortly after the onset of an acute illness or injury, now typically is the endpoint of one or more lengthy chronic illnesses (Callahan, 1993; Fox, 1980; Jones, 1982; Stroebe & Stroebe, 1995). Ethicist Daniel Callahan (1993) has argued that these changes have created a practical paradox in health care: as medical science and technology have gained control over a widening array of assaults on our lives, the process of dying has become more agonizing. Contemporary medicine has replaced the certainty of death from a given illness at a given hour with the uncertainty of a vanishing line between life and death. Yet despite the uncertainty, encouraged by scientific discoveries and technological innovation, we have become a death avoidant culture (Nuland, 1993). Some argue that death has replaced sex as a core cultural taboo (Gorer, 1965; Kearl, 1996). Callahan contends that we have lost the willingness and perhaps the capacity to talk openly about death except in the bloodless technical terms of medicine and the law. In short, Callahan argues, we have been attempting to control death through monomaniacal scientific and technological efforts. As a result, death has lost much of its meaning. We have become insensitive to the most profound challenges posed by critical illness and death—the ancient and unanswered questions that dying raises about human existence. Most notably, in the blinkered pursuit of control, we have obscured a fundamental, age-old question that embodies our deep ambivalence about death: whether it should be fought or accepted (Callahan, 1993, p. 89; see Hines, Babrow, Badzek, & Moss, 1997, 2001; Hines, Moss, & McKenzie, 1997). Since we cannot and should not go back to a time when we were powerless to deal with mortal illness and death, Callahan argues, we must find ways to deal more forthrightly with this ancient question. We must, in short, face and refashion our understandings of nature and death and ultimately of what it means to live

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a human life. Science cannot do this, but neither can we undertake the necessary private and public discussion without recognizing the powerful imperatives of science. Hence, as revealed in this most basic example, a profoundly significant characteristic of health communication is the pronounced tension between scientific and humanistic assumptions, values, aspirations, and limitations. Idiosyncracy and Commonality. A third characteristic of health communication is the tension between idiosyncracy and commonality. Of course, this tension reflects the challenge of intersubjectivity or identification in all communication. That is, if meaning is inescapably experiential, and if no two people share a common history, then shared meaning is a problematic notion. However, what we want to say about health communication is that it is distinct because of the ways that it magnifies the tension between our uniqueness and commonality. One of the ways that this occurs is in debates between advocates of two major models of disease and illness. Historians of medicine have labeled as “ontological” the view that diseases are specific entities that unfold in characteristic ways in the typical person. In this framework, diseases exist in some Platonic sense outside their manifestations in a particular individual. The other compelling account of illness, the “physiological” or “holistic,” stresses the individual and his or her adaptation, both psychological and physical, to a changing environment. In this framework, illness exists only in individuals. These ideal-typical notions have been in a state of dynamic tension since antiquity. (Aronowitz, 1998, p. 8)

Ontologically inclined thinkers “question whether one has to treat the ‘whole person’ if one can rid him or her speedily and painlessly of disease and hence prevent the necessity of a long-term ‘association’ with the medical professional” (Jenkins, 1998, p. 354). Reflecting this inclination in the health communication literature, Burgoon (1995) would like to see such practices enforced with boot leather applied to the rear of recalcitrant patients. But those more inclined toward the holistic orientation respond by arguing that disease/illness is frequently not that simple to treat and that the force of medical authority is often countered by reactance (Fogarty, 1997; also see below). The debate between ontological and holistic models of disease and illness reflects the basic tension between idiosyncracy and commonality in health communication. This tension constitutes a faultline in scholarly conceptions of health care and promotion, in the interactions between patients and health care providers, and in the conceptions of risk held by health communicators and their audiences. For example, the tension is reflected in the ever-present possibility of debates over relative expertise, what counts as legitimate evidence, the meanings of (relative) risk, decision making, and so on. In addition to the various models of disease and illness, the tension between idiosyncracy and commonality is also manifested in the distinction between affirming the personal meanings of an illness (and by extension our life and being) and affirming our common humanity. For instance, illness is at once a private and public matter. We strip illness of its public significance when we promote patients’ individual autonomy as if it were the only important human value (Babrow, Hines, et al., 1998; Callahan, 1993; Smith, 1996). Indeed, we strip ourselves of our humanity when we promote autonomy as our cardinal value. “Human beings will and must be a burden on one another; the flight from dependency is a flight from humanity” (Callahan, 1993, p. 127). Of course, we also stand to lose when we

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deny the individual significance of illness. Although we all become sick and eventually die, each pain—particularly in the way it is borne—marks out our individuality, and each passing is the loss of a light that will never shine again. So, in these and many other ways, health communication is characterized by the tensions between idiosyncracy and commonality. (Un)Certainties and Values, Expectations and Desires. Uncertainty is central to the experience of illness (Atkinson, 1995; Babrow, Hines, & Kasch, 2000; Babrow, Kasch, & Ford, 1998; Brashers & Babrow, 1996; Katz, 1984). The significance of uncertainty is suggested by the observation that expectations pervade illness experiences. Expectations play a role in the production of somatic disorders, in the processes by which disorders are labeled as worthy of medical care and illness labels are applied, and in recovery and prevention (Jones, 1982). Moreover, the significance of uncertainty is demonstrated in research explicitly concerned with uncertainty and illness (e.g., Cohen, 1993; Mishel, 1988, 1990) as well as in studies of stress and coping (e.g., Lazarus, 1983; Lazarus & Folkman, 1984; Rothbaum, Weisz, & Snyder, 1982; Taylor, 1983), and human helplessness and perceived control (e.g., Abramson, Garber, & Seligman, 1980; Abramson, Seligman, & Teasdale, 1978; Bandura, 1982; Brenders, 1987, 1989). (Babrow, Kasch, et al., 1998, p. 2)

Given its pervasiveness, it is not surprising that uncertainty is the locus for much of the tension between the realms of communication and the body, scientific and humanistic assumptions and aspirations, and idiosyncracy and commonality. Indeed, some perspectives take uncertainty as their focal point and, based largely on mechanistic or biomedical frameworks, emphasize accurate communication of knowledge and uncertainty (e.g., models of judgment under uncertainty, rational choice and decision analysis, and theories of risk; but see efforts to overcome some of these limits in Friedman, Dunwoody, & Rogers, 1999) or uncertainty reduction (Albrecht & Adelman, 1987; Sheer & Cline, 1995). Others take uncertainty as a starting point for more open-ended analysis. In particular, a number of writers have begun to develop theories of the relationship between communication and uncertainty management (Brashers, 2001; Brashers et al., 2000; Mishel, 1988, 1990; Parrott, Stuart, & Cairns, 2000). And, in a related vein, still others, including some interested in management or coping, see uncertainty as only half of the heart of illness (Babrow, Kasch, et al., 1998; Babrow et al., 2000; Brashers & Babrow, 1996; Ford, Babrow, & Stohl, 1996; Hines, 2001; Hines, Babrow, et al., 1997, 2001). For instance, problematic integration theory suggests that uncertainties take on meaning only relative to the values at stake in health and illness. Moreover, Babrow (2001, in press) has recently argued that this theory counters a wide variety of common misconceptions about uncertainty: That it has a single or narrowly homogeneous meaning, such as that it is necessarily bad (Brashers, 2001; Ford et al., 1996; Mishel, 1988, 1990) or the result of insufficient information (Babrow, Kasch, et al., 1998; Babrow et al., 2000). That the main response to uncertainty is information seeking, the aim and significant outcome of any encounter with uncertainty is its reduction (or frustration of this aim), and its reduction is always possible.

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That uncertainty and its attendant problems are resolved exclusively by managing the level of uncertainty (as opposed to engaging in a reappraisal of values or more holistic transformations). That any one resolution of an unpleasant uncertainty is the final punctuation of experience—or, for that matter, that any dilemma involving expectation and desire has a clear first cause. That the course of such a dilemma is predictable in a specific and robust sense.

In summary, much recent theorizing about health communication has emphasized that uncertainty pervades illness experiences and communication about health and illness. A subset of that work (for a review, see Babrow, 2001) further suggests that the meaning of uncertainty in general—that is, in any of its particular forms—is profoundly dependent on the values at stake. Moreover, this theorizing recognizes that our evaluation of whatever is at stake depends on how we formulate and manage uncertainty. This occurs, for example, as we cope with chronic illness, with irreversible losses from aging and illness, and with approaching death. Our sense of possibilities, our construction of the unknown, of the knowable, and of the nature of what it means to know conditions what we value and the extent to which we value it (Babrow, 2001); so too what we value shapes what we take to be possible, both by compelling us to cling to possibility (the essence of hope; see Babrow, 1992, 1995; Beach, in press) and by forcing us to act in ways that are intended to affect objective chances. As mundane examples, think of the motives related to diet, exercise, political organizing, and changing health care providers and care plans. For a heroic example, consider the pursuit of a cure for a child’s illness depicted in the 1992 movie Lorenzo’s Oil. In health communication, therefore, values force the rearticulation of (un)certainty and (un)certainty compels the rearticulation of values (Babrow, 1992, 2001, in press; Babrow et al., 2000; Babrow & Kline, 2000). Summary and Implications of Our Map

As the many chapters in this handbook attest, health communication researchers are engaged in a vast, varied, and dynamic enterprise. It is unlikely that many theories will embody all of the characteristic tensions we have identified. However, to the extent that a theory recognizes and attempts to grapple with these characteristics, it will do justice to what is distinctive and significant about health communication. Moreover, to the extent that other areas of communication theory and research are also interested in these tensions, health communication theories that grapple with these characteristics will contribute substantially to the entire field. The very nature of the characteristic tensions we have described suggests that health communication theories ought to be developed with a dialectical sensibility. In other words, we believe that the most productive way to theorize about health communication is to illuminate and struggle with the theses and antitheses embodied in the tensions sketched above. We also are convinced that communication constitutes these tensions and the varied responses to them in health and illness experiences (for a view of various responses to dialectical tensions, although in the realm of interpersonal relationships, see Baxter & Montgomery, 1996). Finally, it should be said that we do not believe our analysis of significant distinguishing features captures all of the important and distinctive issues in health communication. We offer our analysis not only in the hope that it will provoke theories that contend with

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the tensions we have identified but also with the wish that it will stimulate more refined, searching, and illuminating metatheories. ORGANIZING HEALTH COMMUNICATION THEORIES

There are a host of ways to formulate an organized understanding of health communication theories—essentially, to formulate alternative maps of the domain of theories (as opposed to the domain of health communication experiences). For instance, we might construct a topical scheme based on the four distinctive tensions in health communication (sketched above). The trouble with this sort of scheme is that the theories we would most like to highlight—those of the sort we would like to encourage—would be unclassifiable in the sense that they would engage with all of these tensions. Other alternatives would be to classify theories by context or level of analysis, which is largely the approach taken in this handbook, or to order them by their historical evolution. Another important approach is to organize theories by their metatheoretical commitments. The appeal of this alternative is that it illuminates various underlying, often tacit philosophical commitments. There are, however, numerous ways to approach metatheoretical issues. One powerful approach, recently undertaken by Anderson (1996), is to classify theories according to their (often implicit) answers to questions about ontology, epistemology, praxeology, and axiology. To paraprhase Anderson, the ontology of a theory makes a claim about what is, and more specifically it answers the questions: “What is the nature of the phenomenal world? What is our manner of engagement with that world? What is the nature of the individual within that world?” A theory’s underlying epistemological commitments reflect a view of what we can know; it answers the questions: “What is the character of the justified argument? What is the relationship between theory and method?” Praxeology entails claims about how theorizing is done; in other words, it answers the question, “What is the practice of the practical argument?” Finally, axiology refers to one’s view of the value of theory. The corresponding question is, “What is the presence of theory in society?” (pp. 2–3) For each of these questions, there are several possible answers, and although some combinations of answers are unlikely, theorists have formulated many different combinations. As a result, there are many different ways of distinguishing theoretical genres. One of the more common ways of comprehending these varieties is exemplified by Bochner (1985, 1994), who argues that a pragmatist stance is central to all discussions of communication inquiry. “The pragmatist point is that the terms that will prove most useful depend upon the purposes to which inquiry is directed. Because there are a number of legitimate goals that [scholars] may seek to achieve, there are a number of different vocabularies that may be applied to these goals” (Bochner, 1985, p. 36). For these reasons, Bochner (1985) compares and contrasts three metatheoretical perspectives—empiricism, hermeneutics, and critical theory—in terms of their goals, views of phenomena, theoretical functions, production of knowledge, and judgment of truth claims (also see Miller, 2002). In a later paper, Bochner (1994) includes narrative theory as another alternative vocabulary for theorizing about communication. “By admitting that there are at least three legitimate goals to which our . . . work can be addressed, we are liberated from the obligation to find a universally accepted standard for judging which point of view about . . . inquiry is ultimately correct” (Bochner, 1985, p. 52). The pragmatic thread has recently been used to weave an even broader tapestry of scholarly goals in Craig’s (1999) synthesis of seven historical traditions within the field of communication. Craig developed his conception of the field of communication using

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three lines of argument. The first line advocates a constitutive metamodel of communication; such a metamodel pictures different theories as varied “ways of constituting the communication process symbolically for particular purposes” (p. 127). The second line of argument is that communication theory ought to be seen as metadiscourse, or communication about communication. In other words, “the technical practice of communication theory largely derives from our ordinary, everyday practices of talking about communication” (p. 129). Craig’s third line of argument is that communication is best conceived as a practical discipline. He envisions “communication theory as an open field of discourse engaged with the problems of communication as a social practice, a theoretical metadiscourse that emerges from, extends, and informs practical metadiscourse” (p. 129). Seen from this perspective, health communication theory is understood to emerge from practical efforts such as those designed to foster patient autonomy. For example, the doctrine of informed consent (Beauchamp & Childress, 1994) and the Patient Self-Determination Act (Doukas & Reichel, 1993) give rise to theory building, which in turn is intended to inform and refine these practices (e.g., Hines, 2001; Hines, Babrow, et al., 1997, 2001; Katz, 1984). Based on these three foundational arguments, Craig lays out seven traditions within communication theory: rhetorical, semiotic, phenomenological, cybernetic, sociopsychologic, sociocultural, and critical. Among the many virtues of this formulation is that, unlike in a number of previous attempts to differentiate types, communication theories in this scheme have “something to agree and disagree about—and that ‘something’ is communication, not epistemology” (p. 135). In other words, Craig views these seven traditions as different ways of conceptualizing and problematizing communication. In addition, Craig’s framework is laudable for its attempt to promote metadiscourse. He does this doubly well in the sense that (a) he identifies ways that each tradition can be used to engage with everyday practice (i.e., ways that each tradition both supports and challenges commonplace understandings) and (b) he describes topoi for argumentation across traditions (summarized in his Table 2).2 Our aim here is not to reproduce Craig’s analysis by applying it in full to health communication theory. Rather, we want to foster disciplinary development—dialogue and theory building—and practical engagement along the lines he suggests. Although we cannot discuss all possibilities, we can at least illustrate the sort of theoretical and practical matters suggested by our view of health communication and the perspective on theory represented in Craig’s work. Therefore, following are thumbnail sketches of the seven approaches to theorizing and brief examples of points of contact between each tradition and the tensions in health communication identified above. We also describe one or two pragmatic implications of each theoretical perspective. The Rhetorical Tradition

According to Craig (1999), the rhetorical tradition theorizes communication as a practical art of persuasive discourse (traditionally, artful public discourse, although these boundaries have eroded over the centuries; see Bizzell & Herzberg, 1990). Rhetorical theory has 2 A reader of an early draft of this chapter pointed out that Craig’s framework, by dividing the field into seven camps, may discourage rather than encourage metadiscourse. Any such scheme runs this risk by creating categories. However, we believe that Craig’s analysis of topoi for argumentation across traditions serves as a powerful impetus for dialogue and mutual exploration. Unfortunately, due to space constraints, this chapter can only point interested theorists toward Craig’s potentially healing topoi.

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enormous implications across the spectrum of public deliberation over health care policies of every sort. And as traditional boundaries have been challenged, scholars have developed analyses of ever wider forms and contexts of suasive texts and discourse in the rhetorical tradition (e.g., Condit, 1990; Sharf, 1990; Solomon, 1985). We believe that rhetorical theory is particularly well suited to studying characteristic tensions in health communication. Notably, from nearly its inception, the rhetorical tradition has grappled with the role of discourse in arriving at probabilistic judgments and also with the tensions between reason and emotion (Bitzer, 1981; Craig, 1999; Howell, 1956). Hence, it is well suited to studies of the communicative framing of uncertainty and values and the tension between expectation and desire. Moreover, rhetorical theory has important implications for understanding the mutual interdependence of the symbolic and physical realms (Chesebro, 1982) and tensions between scientific and humanistic orientations (Harter, Stephens, & Japp, 2000; Sharf, 1990; Solomon, 1985). Rhetoric is also fundamentally about creating a sense of identification—shared or common meaning and the constitution of community—out of the multiplicity of voices, selves, and experiences that make up our individuality (Burke, 1969; Perelman & Olbrechts-Tyteca, 1969). Hence, rhetorical theory has much to add to our understanding of the tension between idiosyncracy and commonality so essential to health communication. The rhetorical tradition also offers resources for bridging theory and practice. As noted earlier, Craig (1999) discusses ways that rhetorical theory both appeals to the common sense of everyday discourse (e.g., the value of informed judgment and the improvability of practice) and challenges metadiscursive commonplaces (e.g., mere words are not actions, appearance is not reality, style is not substance, and opinion is not truth) (p. 133). Consider, for instance, the many changes in the style of health care practice wrought by managed care (Lammers & Geist, 1997; Mattson & Brann, 2002; Miller, 2001). In its extensive considerations of style, rhetorical theory can be used to challenge policymakers (see Chapter 18), insurers, and pracitioners who wish to maintain that these profound changes in the style of health communication and care are not also profound changes in the substance of communication and care. The Semiotic Tradition

According to Craig (1999), the semiotic tradition theorizes communication as intersubjective mediation by signs and sign systems. A “crucial and revolutionary aspect” of semiotics, as developed in the work of Ferdinand de Saussure, is its “insistence on the primacy of relations and systems of relations. . . . The strategy can be stated most simply as a shift in focus, from objects to relations. It is relationships that create and define objects, not the other way around” (Culler, 1986, p. 147). Hence, semiotics problematizes the nature of individual signs and meanings, positing instead that signs are meaningful only in relation to other signs. Intersubjectivity, then, arises to the extent that webs of relationships are shared by communicators. Semiotics has important implications for the distinctive tensions in health communication described above. For instance, consider the tension between the realms of communication and the body. Knuf and Caughlin (1993) illuminate the ways that diet advertising builds up new systems of representation in which the body and self are transformed. Splashy linguistic and glossy visual signs link the body to vitality, social acceptability, and self-esteem. Moreover, through the process of “symbolic inversion,” weight reduction is transformed into the consumption of products, and an industrial diet product takes the place of natural foodstuffs. In these ways, viewers are socialized into a pattern of chronic

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dependence on diet products and the diet industry—a dependence on outside assistance— rather than seeing weight reduction as an uncommodified moderation of calorie intake and expenditure. Similarly, Gemin (1997) analyzes the semiotic production of codependent identities. Semiotic insights also can be used to promote positive innovations in health communication practice. Craig (1999) notes ways that semiotic theory both appeals to some commonsense postulates of everyday discourse (e.g., understanding requires a common language; the danger of miscommunication is omnipresent) and challenges other metadiscursive commonplaces (e.g., words have correct meanings and stand for thoughts; codes and media are neutral). Consider, for instance, the widespread (though sometimes reluctant) embrace of new technologies as media for health communication. Web sites sanctioned by medical authorities convey not only accurate content but also, inescapably, the medical establishment’s imprimatur on patients’ self-directed study of disease, self-diagnosis, and self-treatment. Although these authoritative sites may urge visitors to consult a physician, the cautionary notes cannot remove the necessity of an initial judgment of health status by the patient or Web visitor, nor are the admonishments likely to deter the majority of people willing to diagnose and treat themselves. Semiotic theory thus suggests important issues that must be managed by would-be sources and users of health information. The Phenomenological Tradition

As Craig (1999) characterizes it, the phenomenological tradition theorizes communication as dialogue or experience of otherness: Authentic communication, or dialogue, is founded on the experience of direct, unmediated contact with others. Communicative understanding begins in prereflexive experience arising from our bodily existence in a shared lifeworld. . . . Hence, phenomenology challenges the semiotic notion that intersubjective understanding can be mediated only by signs (Stewart, 1995, 1996), as well as the rhetorical notion that communication involves artful or strategic uses of signs. . . . Among the paradoxes of communication that phenomenology brings to light is that conscious goal seeking, however benevolent ones intentions may be, annihilates dialogue by interposing one’s own goals and strategies as a barrier against one’s direct experience of self and other. (pp. 138–139)

Outside of Rogerian psychotherapy, phenomenological approaches to health communication have been rare (for exceptions, see Orbe & King, 2000; Peterson, 1987; also see Mattson, 2000). Nonetheless, this tradition can be used to derive important ideas about the tensions that characterize health communication. For instance, consider the tension between the realms of communication and the body. Zook (1994) argued that both the biomedical and biopsychosocial models are based on dualistic conceptions of mind and body that misapprehend both the nature of health and illness and of communication. In the biomedical model, illness is reduced to biological pathology (i.e., disease), whereas the biopsychosocial model allows for the interdependence of psychological, social, and physiological factors. But in both models, according to Zook, “biological function is affirmed as the foundation of health” (p. 358), and communication serves to further colonize a lifeworld of predefined biological health (p. 359). By contrast, a phenomenological theory of health and communication opens the way to a truly holistic conception of health as a state of being-in-the-world.

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Being-in-the-world is . . . being-embodied. Our experience of the world arises first and foremost within the prereflective unity of body and self in lived experience. Embodiment thus precedes the more narrowly constructed “body as idea (i.e., object)” that we find in both medical models. As such, the question of the meaning of our being [e.g., an ache, a lump] is not merely a concern—it is the concern. (p. 363)

The phenomenlogical tradition also offers avenues for influencing health communication and health care practice. Notably, Craig (1999) identifies ways that the tradition appeals to the common sense of everyday discourse (e.g., we all need human contact; we should treat others as persons, respect differences, and seek common ground) and challenges other common beliefs (e.g., communication is skill; the word is not the thing; facts are objective and values subjective) (p. 133). As just one example, phenomenology challenges widespread practice by suggesting that skill instruction, strategy, and artifice, rather than improving communication, create barriers to authentic contact between patients and care providers. Rather than imposing preconceived understandings, health care providers and patients should be encouraged to cultivate sensitivity and openness (Mattson, 2000). The Cybernetic Tradition

Craig (1999) contends that, in the cybernetic tradition, communication is theorized as information processing—processing that allows systems to function (and often causes them to malfunction). Communication involves encoding, transmission, and decoding. Moreover, depending on the focus and complexity of the particular theory, communication can also include feedback and more or less complex system regulation and environmental impact. (Of course, a system and its environment together constitute an encompassing supersystem, and hence “environmental impact” is just another instance of information processing.) Theories in the cybernetic tradition are clearly suited to studying characteristic tensions in health communication (Donohew & Ray, 1990). For instance, theories in this tradition have much to tell us about the tensions between the realms of communication and the body insofar as they are conceived as distinguishable yet interrelated systems. Moreover, family systems theories (Bochner & Eisenberg, 1987; Minuchin, 1974; Watzlawick, Beavin, & Jackson, 1967; Whitchurch & Constantine, 1993) are applicable to the tension between idiosyncracy and commonality. A member’s illness stresses the family system (e.g., creating role and boundary ambiguity; see Boss, 1999; Northouse & Northouse, 1998, chap. 3). Interdependence forges a common experience among family members. However, individuals are themselves open systems and are elements within many systems in addition to the family. The particular, unique configuration of each individual’s relationships to these other systems creates idiosyncratic experiences and meanings of the very illness that disturbs the entire family. In addition to its suitability for studying the distinctive tensions of health communication, the cybernetic tradition also offers resources for bridging theory and practice. Craig (1999) discusses several ways that this tradition appeals to the common sense of everyday discourse (e.g., the mind and brain are identical; information and logic are valuable; complex systems can be unpredictable) and challenges other commonplace notions (e.g., humans and machines differ; emotion is not logical; cause and effect are linear). For instance, systems theory counters the resilient and pernicious linear effects notion that patient “noncompliance” is a function of some characteristic of the patient (e.g., ignorance or irresponsibility) or the physician (e.g., inadequate compliance-gaining ability). Systems

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thinking suggests that control and resistence are mutually conditioning features of the traditional hierarchical relationship. Fadiman’s (1997) depiction of the “collision” between the Hmong and the American medical establishment provides a poignant example of this dynamic. Although health-promoting change might be accomplished to some degree by first-order changes, such as the physician pressing less and/or the patient complying more, the fundamental dynamic can only change by a second-order transformation in the nature of the relationship (Watzlawick, Weakland, & Fisch, 1974). The Sociopsychological Tradition

Communication, according to the sociopsychological tradition, is “a process in which the behavior of humans or other complex organisms expresses psychological mechanisms, states, and traits and, through interaction with similar expressions of other individuals, produces a range of cognitive, emotional, and behavioral effects” (Craig, 1999, p. 143). Although this tradition has implications for all four of the distinctive tensions in health communication, the most obvious are related to the tension between (un)certainty and values. A wide range of theories and foci illustrate this point. For instance, theories of health beliefs (Janz & Becker, 1984; Mattson, 1999), risk (Friedman et al., 1999), fear (Berger, 1998; Witte, 1992), compliance (Burgoon, Birk, & Hall, 1991), social support (Albrecht & Adelman, 1987, especially chap. 11; Ford et al., 1996), uncertainty management (Brashers, in press), and problematic integration (Babrow, 1992; Hines, in press) all grapple in some way with uncertainties and values. Ultimately, each of these theories must confront the tensions between expectations and uncertainties on the one hand and values, desires, and wishes on the other (Babrow, 2001-a, in press-b). The sociopsychological tradition also has both commonsensical and unobvious implications for health communication practice. Craig (1999) notes that these theories appeal to commonly accepted ideas: that communication reflects personality, that beliefs and feelings bias judgments, and that people in groups affect one another. These models also counter familiar notions: that humans are rational beings, that we know our own minds, and that we know what we see. For example, explaining illness is more than merely processing clear and thorough information; rather, it is working out health beliefs and uncertainties within the context of related beliefs and values that constitute our sense of self, roles, and relationships through interaction with health care providers, loved ones, and others (Babrow et al., 2000; Mattson, 1999; more generally, see Whaley, 2000). Sociocultural Tradition

Craig (1999) states that the sociocultural tradition views communication as “a symbolic process that produces and reproduces shared sociocultural patterns” (p. 144). In other words, shared systems of beliefs, values, language, political economy, and various other institutional arrangements make communication possible. Moreover, our communication reproduces these very arrangements. Still, as Craig notes, in given interactions and across time, there is need and opportunity for improvisation and hence for the production of new sociocultural arrangements. [Communication problems] are thought of as gaps across space (sociocultural diversity and relativity) and across time (sociocultural change) that disable interactions by depleting the stock of shared patterns on which interaction depends. Conflicts, misunderstandings, and difficulties in coordination increase when social conditions afford a scarcity of shared rituals,

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rules, and expectations. . . . Such perturbations in the ecology of codes and media disrupt interaction, but at the same time enable the creative production of new meanings and new means of communication. (p. 145)

Whereas the sociocultural tradition is relevant to all of the four distinctive tensions in health communication, it has especially significant implications for the tension between scientific and humanistic assumptions, values, aspirations, and limitations. In particular, cross-cultural studies reveal the enormous difficulties of reconciling the perspective of Western allopathic medicine with that of indigenous healing. Fadiman (1997) provides compelling illustrations. Consider the dilemma faced by a physician when the mother of a Hmong patient was unable or unwilling to follow a clearly effective medical prescription deemed necessary for the child’s survival and then threatened—with some credibility— to kill herself and her remaining children in response to the physician’s threat to have the child removed by Child Protective Services. As another example, a Hmong mother perceived the removal of a soiled string around her baby’s wrist when she was admitted for emergency treatment as a life-threatening act; in the mother’s view, an evil spirit, or dab, might steal the child’s spirit once the securing string was removed. In other words, the most basic assumption of Western medicine, that well-established medical science trumps all other forms of knowledge, may be overturned when cultures interact (also see Airhihenbuwa, 1995; Geist, 1994). Like the other traditions, the sociocultural tradition can be linked in important ways to practice. Craig (1999) suggests that sociocultural theories can appeal to common-sense notions such as the idea that the individual is a product of society, every society has a distinct culture, and social actions have unintended effects. He also notes that these theories challenge belief in individual agency and responsibility, the absolute identity of self, and the naturalness of the social order. Obviously, then, sociocultural theories represent a substantial challenge to sociopsychological approaches to the problem of “noncompliance” (see Mishler, 1984). The Critical Tradition

Finally, according to the critical tradition, genuine communication occurs in the process of discursive reflection, but material and ideological practices in society often preclude or distort discursive reflection and hence prevent authentic communication (Craig, 1999). Ray’s (1996) collection of essays on communication and disenfranchisement offers numerous powerful examples of the application of critical theory to health and illness: [The] volume examines the communication-disenfranchisement relationship, specifically how it is accomplished, managed, and overcome. Through interactions with the family, friends, and institutions, and from the mass media, definitions of acceptable identities, acceptable behaviors, acceptable topics of discussion, and acceptable expectations are made clear as to who “fits” where in American society, who controls the resources, who makes the decisions, and who sets the social standards. (p. xvi)

Critical theorists and researchers attempt to uncover the material practices and hegemonic ideologies that distort communication. Like the other six traditions Craig (1999) identifies, critical theory is highly relevant to the various distinctive tensions in health communication. For instance, the tensions

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between scientific and humanistic assumptions and values and between idiosyncracy and commonality appear to be consistent with key tensions in feminist thought (Bullis & Bach, 1996). These same dialectical oppositions are illustrated in Babrow and Kline’s (2000) application of problematic integration theory to critique the “ideology of uncertainty reduction” that ignores or delegitimizes women’s experience of breast self-exams. As one more example, Mattson, Clair, Sanger, and Kunkel (2000) illuminate the tension between idiosyncracy and commonality in a case study of a woman’s search for social support. The relevance of critical theory to distinctive features of health communication also suggests significant opportunities to address practice. Craig (1999) notes that the critical tradition both appeals to the common sense of everyday discourse (e.g., power and wealth perpetuate themselves; freedom, equality, and reason are of value; discussion produces awareness and insight) and challenges metadiscursive commonplaces (e.g., the traditional social order is both natural and rational; science and technology are objective) (p. 133). The most important of these challenges arises in the critical analysis of power relationships in health care institutions and practices (Foucault, 1973). For example, Lupton (1994), who has written some of the most trenchant works in this area, argues the following: Although the health promotion perspective relies heavily on a critique of the biomedical model, it fails to challenge the hegemony of ideologies that deflect the responsibility of health maintenance from the state to the individual (Stevenson & Burke, 1991). The role of culture is reduced to emphasis on “lifestyle” choices, and health or ill-health states are still regarded as being “externalized” to the body rather than being products of social processes (Hepburn, 1988, p. 62). (p. 57)

Waitzkin (1991) has demonstrated that this critique applies not only to health promotion but with equal force to face-to-face encounters with health care providers. Summary

Numerous theoretical traditions have been useful in illuminating health communication. This is not surprising when one considers the affinity of these traditions for the four characteristic tensions that we believe lie at the heart of health communication. Although one might argue, therefore, that theory in this area is nondistinctive, we contend that the four tensions in health communication identified in this chapter constitute a unique gestalt. This is not to say that scholarship in the area should develop apart from the broader field; such a suggestion would parallel the equally distasteful proposition that the many traditions within communication theory ought to be held apart. We would like to see greater attention to the points of common concern. At these junctures there is ample room for recognition of shared understanding as well as debate. In this sense, discourse along the lines suggested by the four characteristic tensions in health communication (also see Craig’s (1999) topoi for argumentation) should prove salutary both in health communication research and application and in the communication field as a whole. CONCLUSION

The prospect of writing this chapter, when we first considered it, was both exciting and daunting. It was intellectually and politically exhilarating to have the opportunity to reflect on and perhaps shape scholars’, students’, and practitioners’ understandings of such a

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vibrant field of research. It was also unnerving to face the challenge of constructing a meaningful view that took into account the diversity and ongoing growth characteristic of the field. In this chapter, we offer not so much a review of extant health communication theory as a view of what such theorizing has been and could be like. This choice was motivated by our confidence that the other chapters would cover the varieties of theory that we only touch on here. Moreover, rather than discussing specific theories, we decided to speak primarily at a more general level. In making this decision, we took some guidance from Craig’s (1999) important work. Specifically, rather than emphasizing particular metatheoretical questions, such as those reviewed by Anderson (1996), or recapitulating epistemologically based frameworks that have been so well articulated in past works (e.g., Bochner, 1984, 1994; Deetz, 1996), we tried to focus more centrally on communication processes, practices, structures, and content. The emphasis on communication rather than epistemology is evident, first of all, in our discussion of what we take to be four distinctive tensions characteristic of health communication: between the realms of communication and the body; between scientific and humanistic assumptions, values, aspirations and limitations; between idiosyncracy and commonality; and between (un)certainties and values. In developing these themes, we were conscious of their limits, but we pressed on in the hope that the chapter would stimulate further efforts to articulate the essence of health communication. We believe that this focus ultimately will be more fruitful than the typically terse, underelaborated attempts to define health communication that have been offered in the past. In short, we hope to foster the sort of dialogue that will promote discipline building. Indeed, we chose to use Craig’s (1999) analysis of communication theory as a framework because of its focus on communication. This is the second way in which the chapter is communication-rather than epistemology-centered. As we worked our way through Craig’s analysis, we were struck not only by its elegance but also by its unavoidable limitations. Again, the map is not the territory. But in the spirit of his work, we offer our application of Craig’s perspective in the hope that it will foster cross-tradition dialogue and discipline-building. One important aspect of his work that we have mentioned fleetingly in this chapter is his analysis of topoi for argumentation across traditions. Such dialogue about health communication, whether or not it takes the specific forms outlined by Craig, will be essential to synthesis of diversity and unity that must constitute the future of health communication theory. Finally, we hope that this chapter on theory will also foster application. As we said earlier, concerns about the contributions of health communication theory to practice have little to do with the nature of theory and more to do with the activities of theorists who fail to complete the circle in which theory and practice interpenetrate. The discussion of various traditions provides some indication of the sorts of practical implications that theories provide. Although the different traditions give rise to very different stances on the social significance of theory (see Anderson, 1996, chap. 8), ultimately the worth of what we do as theorists will be determined by how our theories are applied in practice. REFERENCES Abramson, L. Y., Garber, J., & Seligman, M. E. P. (1980). Learned helplessness in humans: An attributional analysis. In J. Garber & M. E. P. Seligman (Eds.), Human helplessness: Theory and applications (pp. 3–57). New York: Academic Press.

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4 Communication in Medical Encounters: An Ecological Perspective Richard L. Street, Jr. Texas A&M University

Has managed care made it harder for patients and physicians to talk openly and honestly with one another? Has the Internet changed the way patients communicate with their doctors? What effect are new state and federal health policies (e.g., patient bills of rights) having on the health care provider–patient relationship? To what extent do race and ethnicity affect decisions made during medical consultations? These are but a few of the questions currently being asked by a variety of stakeholders of the health care system, including policymakers, managed care corporations, health care providers, patients, and media pundits, to name a few. Those of us who study health communication should be both encouraged and troubled by these questions. On the one hand, they highlight the centrality of communication in the delivery of quality health care. On the other hand, despite over 40 years of research, we still do not know enough to adequately explain how a changing health care landscape is transforming the communicative dynamics of medical consultations. The primary shortcoming in our work is that, whereas we have examined provider–patient communication with respect to the participants’ characteristics and skills, we have done relatively little to develop and test theoretical models of the processes underlying these interactions, nor have we directed sufficient attention toward explaining the role of context in the medical encounter (Thorne & Paterson, 2001). In this chapter, I present an ecological perspective for the study of communication in medical encounters. Ecology, simply defined, is the study of interrelationships between organisms and their environments. An ecological perspective on communication in the medical consultation, then, looks at the interaction between health care providers and patients as situated within and affected by a variety of social contexts. This chapter places extant research within the framework of an ecological model in an effort to explain key

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processes germane to provider-patient interactions and to point to gaps in our understanding of these processes. The chapter concludes with a discussion of the implications of this model for future research. AN ECOLOGICAL MODEL OF COMMUNICATION IN MEDICAL ENCOUNTERS

Figure 4.1 presents an ecological model of communication in medical consultations. Before elaborating on the model, I will highlight several features of my analysis. First, although the medical encounter may be contextualized in a number of ways, I focus on how communication in these interactions is (or can be) affected by the interpersonal, organizational, media, political-legal, and cultural environments within which they take place. Second, whereas any of these contexts may influence the course of a communicative event, the one within which the consultation is most fundamentally embedded is the interpersonal context (see Fig. 4.1). In other words, what unfolds during the encounter ultimately depends on the communicative actions that emerge directly from interactants’ goals, linguistic skills, perceptions, emotions, and knowledge as well as from the constraints and opportunities created by the responses of their partners (Street, 1991, 1992b). Third, the primacy of individual and partner influences on communication should not imply that broader noninterpersonal factors do not affect the interaction. However, these influences will have an impact to the extent that they can be linked to affective, cognitive, and behavioral processes affecting the production and perception of talk. Finally, because these noninterpersonal contexts are broad, complex, and multifaceted, I examine their potential impact on medical encounters with respect to current societal concerns. For the purposes of this chapter, these include managed care (the organizational context), the Internet (the media environment), malpractice and patient bills of rights (the political-legal context), and race and ethnicity (the cultural context). THE INTERPERSONAL CONTEXT

To date, the medical encounter has primarily been studied as an interpersonal communication event. One line of inquiry examines how patterns of provider-patient communication are related to the attributes of the patient (e.g., education, age, health status), the provider (gender, medical specialty), and their relationship (rapport, trust) (for reviews, see Ong, De Haes, Hoos, & Lammes, 1995; Roter & Hall, 1993; Roter, Hall, & Katz, 1988; Street, 2001; Thompson, 1994). A second area of research examines relationships between providers’ and patients’ communicative actions and the various outcomes (mostly patient focused) resulting from the consultation (e.g., satisfaction with care, commitment to treatment, health improvement) (for reviews, see Roter & Hall, 1993; Stewart, 1995; Street, 2001). Although these studies have identified sources of variability in the communicative content, structure, and outcomes of medical encounters, they do little to explain processes accounting for these phenomena. Such an understanding is crucial if we are to discover ways in which medical consultations are affected by the contexts in which they are situated. The Communicative Ontology of Medical Encounters

Like other types of social interaction, the medical consultation is a dynamic, creative, and socially constructed event. Although certain technical activities may take place

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Goals Perception of partner Perception of relationship Communicative strategies Emotional state

Goals Perception of partner Perception of relationship Communicative strategies Emotional state

Race/ethnicity Socioeconomic status Religion, etc.

CULTURAL CONTEXT

Cognitive-affective influences

Cognitive-affective influences

Figure 4.1 An ecological model of communication in medical encounters.

Internet Telemedicine Mass media, etc.

MEDIA CONTEXT

Verbal and Nonverbal Behavior

Communication style Self-concept (attitudes, beliefs, personality) Linguistic resources

Verbal and Nonverbal Behavior

Predisposing influences

Communication style Self-concept (attitudes, beliefs, personality) Linguistic resources

The Patient

Predisposing influences

The Health Care Provider

INTERPERSONAL CONTEXT

Managed care Services offered, Standards of care, etc

ORGANIZATIONAL CONTEXT

Malpractice litigation Patient bill of rights Medicaid/Medicare coverage etc.

POLITICALLEGAL CONTEXT

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(e.g., a physical examination, a hypodermic injection), the primary activity is talk as the provider and patient exchange information about health-related concerns; make decisions about medical care; and, in the best of cases, establish or maintain a relationship characterized by rapport, trust, and respect. How the interaction unfolds depends on how the participants select, adapt, and coordinate their responses to accomplish their individual and mutual goals. Although each medical encounter has its own unique and idiosyncratic characteristics, it is not a random or chaotic event. In fact, medical encounters reveal a variety of recurring patterns of communicative exchange. To describe processes within the interpersonal context that affect communicative action, I have drawn heavily from social-cognitive models of interpersonal communication (see, e.g., Giles & Street, 1994; Greene, 1984; Patterson, 1983) as well as from previous conceptual work on provider-patient communication (Ong et al., 1995; Pendleton & Bochner, 1980; Roter, 1977; Street, 2001). To understand the communicative dynamics of medical consultations, one must recognize that communication reveals both consistency and adaptation. For example, most people tend to use certain verbal and nonverbal responses across a wide variety of interactions. A doctor who has a friendly and animated communication style may be inclined to be facially expressive and talkative and use humor in most of his or her interactions with patients. However, communication is also adaptive, as interactants adjust their responses in light of their situation-specific goals, their perceptions of their partners, the purpose of the interaction, and the actions of their partner. Thus, this animated, friendly doctor will be more reserved and serious when consoling a patient who is emotionally distraught or who has just been diagnosed with a serious disease. In the model presented in Fig. 4.1, processes related to communicative consistency and adaptation fall within one of three categories: predispositional influences, cognitive-affective mediators, and adaptations in response to a partner’s communicative actions. Predispositional Influences

When researchers try to identify individual differences in the way health care providers and patients talk with one another, they are in essence assuming that people are rather consistent in their communication across different situations and that certain kinds of people (e.g., women, the elderly) communicate in similar ways. Communicative predispositions are reflected in one’s individual communication or self-presentation style (Giles & Street, 1994). Norton (1983) has identified a number of communication styles (e.g., expressive, dominant, open, attentive) and treats them as relatively stable features of a person’s social behavior. As shown in Fig. 4.1, communication style is often related to personal factors that are objective (e.g., age, sex, level of education) and subjective (e.g., self-concept, personality) features of ourselves and our socialization (Giles & Street, 1994). Communication style is also linked to one’s linguistic repertoire. For example, a person who has a dominant and fluent communication style not only has the inclination to be assertive but also has access to an array of linguistic resources that can be quickly and efficiently assembled to produce utterances (see, e.g., Greene & Geddes, 1993; Street, in press). Health Care Providers. The communication styles of health care providers has been examined in two ways. First, some studies have studied how individual clinicians interact with different patients. Byrne and Long (1976) observed that some doctors have rather intractable, controlling communication styles that they use in most of their consultations. Roter and Hall (1993) observed that doctors in their investigations tend to have either a “patient-centered” style or a “doctor-centered” style. The former is characterized

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by responses designed to elicit and accommodate the patient’s perspective in the consultation (e.g., open-ended questions, requesting opinions and concerns, counseling, offering support) whereas the latter style is focused primarily on maintaining clinician control (e.g., close-ended questions, giving directions, attention to the patient’s physical functions, interruptions) and efficiently completing the tasks of the consultation. Finally, Street (1992b) reported that, even after controlling for the patients’ demographic characteristics and degree of participation in the consultation, individual physicians varied in how often they provided information, used partnership-building, and displayed positive socioemotional behavior (e.g., reassurance, encouragement). A second line of research tries to identify whether certain types of health care providers have different styles of communicating. By far the most widely studied individual difference variable has been gender. Compared to male doctors, female doctors generally have longer consultations, give more information, engage in more partnership-building, express more interest in psychosocial aspects of health (e.g., emotions, lifestyle, family), are less directive, do less history taking, and are more explicitly reassuring and encouraging (Bernzweig, Takayama, Phibbs, Lewis, & Pantell, 1997; Bertakis, Helms, Callahan, Azari, & Robbins, 1995; Elderkin-Thompson & Waitzkin, 1999; Hall, Irish, Roter, Ehrlich, & Miller, 1994; Meeuwesen, Schaap, & van der Staak, 1991; Roter, Lipkin, & Korsgaard, 1991). Others have investigated whether a clinician’s communicative predispositions are related to certain beliefs and ideologies. For example, physicians with more positive attitudes toward psychosocial aspects of care use more open-ended questions and make more statements of empathy and reassurance than do physicians less interested in psychosocial issues (Levinson & Roter, 1995). Even a physician’s political leanings may affect communication. As Waitzkin (1985) reported, physicians who consider themselves “liberal” spend more time giving information to patients than do “conservative” doctors. Patients. With respect to patients’ communicative styles, research generally has focused on individual differences. For example, a number of studies have shown that patients with more formal education are more expressive and opinionated than are less educated patients (Bain, 1979; Beisecker & Beisecker, 1990; Stewart, 1984; Street, 1991, 1992b; Street, Voigt, Geyer, Manning, & Swanson, 1995). These findings are likely attributable to several predisposing factors: patients with more formal education (e.g., college educated) generally believe more strongly in patient involvement in health care (Cassileth, Zupkis, Sutton-Smith, & March, 1980; Degner & Sloan, 1992), have more knowledge about health issues (Bertakis, 1977; Street, Voigt et al., 1995), are more familiar with medical terminology (Spiro & Heidrich, 1983), and are more inclined to be verbally expressive (Waitzkin, 1985) than are less educated patients. Communication differences related to other personal and sociodemographic characteristics of patients are less clear-cut. Although some studies show that female patients are more likely than male patients to express their feelings and talk about health in relation to family, friends, and colleagues (Elderkin-Thompson & Waitzkin, 1999; Meeuwesen et al., 1991; Stewart, 1984), other studies report few differences in the communication of male and female patients (Roter et al., 1991). With respect to the patient’s age, some have found that older patients are more likely than younger ones to believe that the clinician is in charge of the consultation and is primarily responsible for medical decisions (Cassileth et al., 1980; Degner & Sloan, 1992; Haug, 1979). However, whereas older patients may be less assertive and verbally active in medical encounters (Haug & Lavin, 1981; Street, Voigt, et al., 1995), some researchers have reported few differences in how younger and

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older patients communicate with their providers (Greene, Adelman, Charon, & Hoffman, 1986). Finally, personality factors also may influence a patient’s style of communication. In pediatric settings, two studies found that mothers who were more open and extroverted and had a internal locus of control asked more questions, gave more information, and more frequently asked for reassurance than did mothers scoring lower on these personality dimensions (Eaton & Tinsley, 1999; Howell-Koran & Tinsley, 1990). To actively participate in the medical encounter, a patient also must have a sufficiently developed repertoire of linguistic and informational resources for communicating with providers so that talk can be produced in a smooth and effortless manner (Street, 2001). For example, a patient will have difficulty discussing a particular health issue if he or she lacks knowledge about the topic or its terminology (Street, Voigt, et al., 1995). Thus, it is not surprising that health care comsumers who have more skill and confidence in their ability to talk to doctors tend to provide more information, ask more questions, and generally speak longer in their consultation than patients with less skill and self-efficacy (Eaton & Tinsley, 1999; Kroll et al., 2000). In this section, I have described how providers’ and patients’ communicative actions are related to various predispositional influences. However, many would argue that how one communicates in large part depends on the situation. That is, providers and patients will adapt their behavior to different partners, in different types of interactions, and for different purposes. Below I discuss two types of situation-specific influences: (a) cognitiveaffective factors related to how one communicates within a specific interaction and (b) the opportunities and constraints created by a partner’s communicative actions. Cognitive-Affective Influences

For any interaction, communicators typically have a cognitive representation of the encounter that includes their goals, perceptions of their partner, expectations about what behaviors are appropriate, and possible trajectories in which the interaction will unfold (Giles & Street, 1994; Greene, 1984; Patterson, 1983). Such representations help guide us through the interaction and partially determine how we behave and how we interpret the behavior of others. I have labeled these types of situational influences as cognitive-affective influences to show how communication is related to strategic (e.g., goals, purpose), attributional (e.g., stereotypes, impressions), and relational (e.g., trust, familiarity) considerations. For example, a doctor may use more or less medical terminology depending on whether he or she thought the patient could understand technical explanations. Or a patient might be more willing to talk about sexual dysfunction with a physician he or she knows and trusts than with a doctor who is a stranger. Health Care Providers. Although health care providers may have distinctive styles of communicating, they also will talk differently to different types of patients. One explanation for these findings is that a clinician’s goals and attitudes toward different patients influence his or her behavior during the consultation (Roter & Hall, 1993). For example, when interacting with patients who are sicker or in poorer health, health care providers may conduct their consultations in a more serious and concerned manner (Bertakis, Callahan, Helms, Azari, & Robbins, 1995; Hall, Roter, Milburn, & Daltroy, 1996), focus more on the physical aspects of health (as opposed to asking about lifestyle and emotional well-being; Roter et al., 1997), and assume more control over the consultation (Kaplan, Gandek, Greenfield, Rogers, & Ware, 1995). Clinicians’ communicative

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adaptations in response to the patient’s health status may be due to several factors, including their attitudes about sicker patients, their frustration in dealing with complicated health conditions, and a perceived need to focus more on the physiological causes and consequences of poor health (Hall, Epstein, DeCiantis, & McNeil, 1993; John, Schwenk, Roi, & Cohen, 1987). Providers also vary their behavior depending on the patient’s age. If a clinician has a stereotype of the elderly as having diminished cognitive capacity, then he or she may use simplistic or exaggerated speech forms (e.g., “baby talk”; see Sachweh, 1998) or exert more control during the consultation (Kaplan et al., 1995). On the other hand, people also believe the elderly should be shown respect. This may explain why Hooper, Comstock, Goodwin, and Goodwin (1982) found that physicians showed more courtesy to patients over 70 years of age than to younger patients. Conversely, clinicians communicate differently to a juvenile patient than they do to the child’s parents. Pantell, Stewart, Dias, Wells, and Ross (1982) observed that the pediatricians in their study used mostly social conversation, reassurance, and encouragement when visiting with children and were more informative and problem-focused when talking to the parents. Not surprisingly, their study also reported that as children became older, doctors were more likely to discuss substantive issues with them. Finally, a number of studies have investigated whether providers communicate differently depending on the patient’s gender and ethnicity. These issues will be examined later in this essay. Patients. Research on patients’ communication also points to a number of situationspecific influences related to patients’ motivations and perceptions. For example, patients who are quite sick or who are worried about their health are probably highly motivated to express their feelings and talk about their needs and concerns, a claim supported by several studies (Hall et al., 1996; Street, 1992b; Wasserman, Inui, Barriatua, Carter, & Lippincott, 1983). However, health status alone does not necessarily predict what patients will talk about. In Street, Cauthen, Buchwald, and Wiprud’s (1995) study, patients who were experiencing some degree of emotional distress or social dysfunction were more willing to discuss these issues if they believed such topics were part of the doctor’s role responsibilities or if they had seen that doctor on previous visits. Similarly, Agne, Thompson, and Cusella (2000) found that patients were more willing to disclose their HIV status to a health care provider when they perceived a need to do so and when they were more comfortable with the provider. How patients respond to a provider’s personal characteristics (e.g., sex, age, ethnicity) has received little research attention, but anecdotes abound. The issue of gender bias in gynecology is an excellent example. Many women prefer female gynecologists (Schmittdiel, Selby, Grumbach, & Quesenberry, 1999) because they believe male doctors are not capable of understanding issues related to women’s reproductive concerns and sexuality. In my own work, patients on several occasions have made reference to a doctor’s “youthfulness” or revealed their preferences regarding different types of clinicians (e.g., nurse practitioner, family doctor, subspecialists). Although patients may have gender, age, and training biases for or against certain providers, the extent to which these biases manifest themselves in medical consultations remains unclear. Thus far, I have talked about providers’ and patients’ communication in relation to their goals, needs, purposes, and perceptions of their partners. However, the way in which clinicians and patients talk with one another is perhaps most strongly affected by the communicative actions of the other.

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Partner’s Communication Influences

Because interactants must cooperate and coordinate their responses to create a coherent and successful exchange, both the provider and the patient have the potential to exert considerable influence over the behavior of the other. On the one hand, a partner’s conversational contributions provide personal or topical information that one can use in formulating a response. However, a partner’s communicative actions are also constraining. For example, because there is a strong expectation that an “answer” should follow a “question” (Sacks, Schegloff, & Jefferson, 1974), an interactant may feel obligated to answer another’s question even if reluctant to or uninterested in doing so (Street, 1991). Also, because conversational contributions are expected to be topically connected (Tracy, 1985), an interactant who asks a question, offers an opinion, or makes some other substantive remark has introduced topical content that his or her partner is expected to incorporate into his or her forthcoming response. Health Care Providers. Because clinicians typically assume and are granted considerable control over the interaction, it is not surprising that the clinician’s communication will have a strong impact on the patient’s responses. Further, because the clinician will likely ask questions about biomedical issues and comment on these issues and because the patient will respond so as to satisfy the topical obligations raised by the clinician’s utterances, the consultation will often focus on biomedical aspects of health (Campbell, 1998). However, health care providers also can act in ways that encourage greater patient participation and a broader discussion of health issues. Many patients are unsure about their role in the encounter and the appropriateness of their participation (Roter & Hall, 1993). A provider who shows interest in what the patient is saying and solicits opinions or questions is in effect legitimizing the patient’s involvement as well as creating opportunities and expectations for the patient to elaborate on issues of concern (Street, Voigt, et al., 1995). A number of studies have found that patients tend to ask more questions, express their opinions more freely, provide more psychosocial information, and discuss their concerns more openly when clinicians use partnership-building and other types of patient-centered responses (Cox, 1989; Street, 1991, 1992b; Street & Millay, 2001; Thompson, Nanni, & Schwankovsky, 1990; Wissow, Roter, & Wilson, 1994; Wissow et al., 1998). Patients. Conversely, by being an active participant in the consultation, a patient helps shape the content and flow of the interaction, thereby attenuating the clinician’s control over the encounter. For example, by asking questions, expressing concerns, and telling their health “stories,” patients are providing valuable information about their healthrelated needs, beliefs, and behavior (Sharf, 1990; Street, 1991) that in turn the health care provider can use to make more personalized treatment recommendations (Henbest & Stewart, 1990). However, through their communicative actions, patients are also invoking conversational norms that may obligate clinicians to talk about a particular health issue. Several studies have reported that, compared with more passive patients, those who frequently ask questions, express their concerns, and offer opinions generally receive more information (Greenfield, Kaplan, & Ware, 1985; Street, 1991, 1992b), elicit more support and reassurance (Street, 1992b; Street & Millay, 2001), and are more likely to have doctors accommodate their treatment preferences (Schwatrz, Soumerai, & Avorn, 1989).

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The Interplay of Processes Affecting Health Care Provider-Patient Communication

Thus far, I have discussed predispositional influences, cognitive-affective influences, and partner’s communication influences as though each set of factors operated independently in shaping communication in medical consultations. They do not, of course, and this poses challenges for researchers trying to understand the communicative dynamics of medical encounters. A good example is found in research on the effect of gender in medical care. Although some argue that (male) doctors are more patronizing and domineering with female patients (Todd, 1989; West, 1984), the majority of evidence indicates that in general women patients are given more information (Waitzkin, 1985), receive more encouragement to express their feelings and opinions (Kaplan et al., 1995, Stewart, 1984), and have longer consultations (Meeuwesen et al., 1991) than do male patients. Although this may reflect the clinicians’ attitudes toward female patients or their beliefs about women’s health needs (see, e.g., Wallen, Waitzkin, & Stoeckle, 1979), other evidence suggests that it may be a partner’s communication effect given that women tend to ask more questions (Pendleton & Bochner, 1980; Wallen et al., 1979) and are more inclined to talk about psychosocial aspects of health (Meeuwesen et al., 1991) than are men. Relatedly, patients generally give more information, more freely express opinions, ask more questions, and engage in more positive talk with female physicians than they do with male physicians (Roter et al., 1991). Is this because of patients’ attitudes and their belief that women have less power and are easier to talk to than are male clinicians (see, e.g., West, 1993)? Or is it because female physicians tend to use more partnership-building behavior, are less controlling, ask more about psychosocial aspects of health, and engage in more social conversation with their patients (Meeuwesen et al., 1991; Roter et al., 1991)? In an effort to sort out these influences, Street (1992b) examined the extent to which physician and patient communicative behaviors were related uniquely to their personal characteristics, their partner’s characteristics, and their partner’s communication. Because the seven physicians in that study interacted with multiple patients, each was treated as a level of an independent “doctor” variable. Other predictors included patient characteristics (education, anxiety, and relational history with the doctor) as well as measures of patient question asking, expressions of concern, and opinion giving. The most consistent significant effect was attributed to the “doctor” variable in that the degree to which a doctor gave information, issued directives, engaged in partnership building, and provided positive socioemotional responses was to some extent unique to the doctor’s style (a predispositional influence). However, there were also significant effects related to the patient’s communication, as doctors gave more information and offered more support and encouragement to patients who asked questions and expressed concerns. Interestingly, of the patient characteristics variables, only level of education uniquely explained variation in the physicians’ communication, as doctors engaged in more partnership-building with the more educated patients (see also Kaplan et al., 1995). This study also found that patients did not talk differently to individual doctors per se, but they did ask more questions and offer more opinions when physicians more frequently used partnership-building behaviors. In addition, patients’ communication to some extent was uniquely related to their personal characteristics, as more educated patients asked more questions and offered more opinions, and more worried patients expressed more concerns. In short, if we are to discover how other organizational, media, political-legal,

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and cultural contexts affect communication in medical consultations, scholars must continue to unravel the fundamental interpersonal processes affecting the way health care providers and patients talk with one another. THE ORGANIZATIONAL CONTEXT: IMPACT OF MANAGED CARE

The organizational context of health care is quite complex, and provider-patient communication could be affected by any number of organizational features—the size of the health care facility, types of services offered, location, clientele, standards of care, and so forth. However, over the last 2 decades, perhaps the most talked about and publicly debated health topic has been the growth of managed care as a system of financing and delivering medical care. Below I examine the potential impact of managed care on provider-patient communication in medical consultations. Managed Care: An Overview

It is important to recognize that managed care is not monolithic. In the 1980s, managed care generally meant care provided by HMOs (health maintenance organizations) or prepaid health plans. However, as we enter the 21st century, managed care has grown into a complex and multifaceted phenomenon with no singular identity. Wagner (1997) offers a simple but useful continuum of managed care. At one end is managed indemnity, which may be little more than precertification for elective services and case management of catastrophic conditions within a traditional indemnity plan. At the other end are the staff and group model HMOs that provide care for a fixed amount per person per year. Between these two extremes are a variety of other models of managed care (e.g., independent practice associations, preferred provider organizations), most of which are hybrids of prepaid plans, indemnity coverage, and contracts for services at a fixed or reduced cost. Hence, practically all medical care is “managed” in some way, shape, or form. Public and scholarly opinion is strongly divided on the merits of managed care. On the one hand, managed care organizations have been criticized for creating policies that restrict a patient’s choice of physician, reduce the time physicians can spend with patients, restrict access to care, and place medical decisions in the hands of business managers rather than patients and providers (Birenbaum, 1997; Ginzberg, 1997; Lammers & Geist, 1997). Many physicians believe managed care has pressured them to see more patients per day, limited their autonomy, and made it more difficult to support patient involvement in the consultation (Feldman, Novack, & Gracely, 1998; Grumbach, Osmond, Vranizan, Jaffe, & Bindman, 1998). On the other hand, proponents argue that managed care actually can improve quality of care and even strengthen the provider-patient relationship if the organization facilitates patient access to specialists and other services, encourages and rewards clinicians for patient-centered care (as measured by patient satisfaction scores), and provides patients with health education and disease management resources (Goold & Lipkin, 1999; Lo, 1999; Saxton & Leamon, 1998). Managed Care and Provider-Patient Communication

Within the framework of the ecological model, the policies, practices, and culture of managed care will most likely have their biggest impact on the provider’s and patient’s consultation goals as well as their perceptions of one another (i.e., cognitive-affective factors). In particular, the influence of managed care could (but not necessarily will) result

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in greater clinician control of the interaction, less trust between provider and patient, and more frequent discussion of topics related to health promotion. Control. As mentioned earlier, a provider and a patient generally communicate in a way that reflects and reinforces the provider’s dominance. Under managed care, control may shift even more toward the provider. For example, many managed care physicians see their role as gatekeepers to expensive procedures and specialists as interfering with their ability to respect patient autonomy (Feldman et al., 1998). Many physicians also feel pressured to see more patients for shorter periods of time (Grumbach et al., 1998). Thus, under the constraints of managed care, providers may have a stronger motivation to control the consultation by talking more, interrupting, rejecting the patient’s requests, and issuing more directives. Greater clinician control in turn will reduce patient participation (Biesecker & Biesecker, 1990; Street et al., 1993). However, to say that managed care necessarily results in greater clinician control greatly oversimplifies other factors operating within the interpersonal context of the consultation. For one thing, providers have multiple motivations during patient visits, some of which will mitigate organizational constraints. For example, although providers may feel obligated to adhere to their gatekeeping responsibilities and time constraints, they also try to accommodate the patient’s individual needs and preferences (Feldman et al., 1998). Also, as discussed earlier, it will be hard for a provider to rush through or dominate the interaction if the patient chooses to actively participate in the consultation by asking questions, expressing opinions, and responding in other ways to influence the course of the consultation (Street, 1991, 1992b). A recent study by Gallagher, Lo, Chesney, and Christensen, (1997) highlights the complex interplay of organizational practices, the doctor’s multiple goals, and the patient’s communicative actions. In a study involving 39 internists, a standardized patient (unknown to the physicians) asked for an MRI, an expensive and in this case an unindicated procedure. At one extreme were 3 physicians who immediately agreed to perform the test. At the other extreme were several doctors who refused the request and criticized the patient for being paranoid. Most of the physicians did discuss the patient’s reasons for wanting the test and explained why they thought the test was not necessary. Importantly, over half of the doctors (n = 20) did agree to refer the patient to a neurologist. Trust. On the one hand, managed care may diminish patients’ trust in their health care providers. Compared with fee-for-service patients, those enrolled in managed care plans are more likely to have had a disruption in their primary care because their employers changed health plans. Discontinuity of care in turn threatens trust because of the breakup of an established provider-patient relationship (Flocke, Stange, & Zyzanski, 1997). Also, media attention to managed care “horror” stories involving medical errors and withheld services fosters the belief that doctors put profit above patient care (Freidson, 1989; Mechanic & Schlesinger, 1996). When there is a climate of mistrust or uncertainty, patients are less willing to discuss personal, sensitive, and potentially embarrassing topics with their doctors (Street, Cauthen, et al., 1995). Patients also become suspicious of their doctors’ motives for recommending against referrals or tests no matter how sound the recommendations (Gold, 1999; Lo, 1999; Saxton & Leamon, 1998). Physicians, too, may become overly cautious in their consultations because of their own concerns about patient trust (Levinson et al., 1999). On the other hand, trust between providers and patients is strongly influenced by what happens during consultations. For example, Thom and Campbell (1997) reported that most

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of the people in their focus groups believed that trust was primarily related to the physician’s behavior (e.g., thoroughness of the evaluation, expressing caring, understanding the patient’s experience) and secondarily to external factors (e.g., structural or staffing issues). In a related study, Holloway, Matson, and Zismer (1989) found that patient satisfaction with care (which is often linked to trust) was more strongly predicted by perceptions of the doctor’s sensitivity and provision of personalized medical care, factors that emerge during the consultation, than by whether the doctor was practicing in an HMO or a feefor-service setting. Hence, the patient’s initial sense of trust (or mistrust) upon entering the consultation may be dramatically changed, positively or negatively, depending on the doctor’s communicative performance during the interaction. Promoting Health and Disease Management. Thus far, I have discussed how managed care could have deleterious effects on provider-patient communication and quality of care. On the positive side, managed care does place an emphasis on disease prevention, disease management, and early diagnosis of life-threatening conditions. An organizational emphasis on health promotion could motivate providers to spend more time talking to patients about health maintenance and wellness. Moreover, regardless of whether the organization’s motives are pure (profits are enhanced when people are healthy), patients tend to be more satisfied with their health care when their health plans offer programs for weight control, smoking cessation, cholesterol screening, and other types of health promotion (Schauffler, Rodriguez, & Milstein, 1996). On the other hand, many physicians are not comfortable talking to patients about lifestyle and health-related quality of life unless such discussion is tied to a specific medical condition (Freeman, 1987). Others steer away from these topics, believing that they are too time consuming (Campbell, 1998). In short, although the organization may promote the importance of health maintenance and disease prevention, providers may have other competing goals that cause them to give little more than lip service to these issues. Summary

Given the many forms of managed care and the variety of clinicians’ and patients’ goals for medical consultations, it is not surprising that research to date has not revealed a clear, definable effect of managed care on communication in medical encounters. Some studies have found that quality of care and provider-patient communication are better in fee-for-service than in managed care organizations. For example, Rubin et al. (1993) reported that patients seeing physicians in solo fee-for-service practices tended to rate their interactions with physicians more favorably than did patients seeking care in solo prepaid, multispecialty group, and HMO settings. In a study of Medicare beneficiaries having either HMO or indemnity coverage, patients expressed satisfaction with their care regardless of the system, but fee-for-service patients were more likely than HMO enrollees to indicate higher satisfaction with the quality of interaction with their physicians (Tudor, Riley, & Ingber, 1998). On the other hand, Callahan and Bertakis (1993) found that physician-patient interactions in the managed care environment they studied were actually longer, characterized by more questions from patients, and had more discussion of preventive care, disease management, and substance abuse than did consultations in the fee-for-service practice. These findings are consistent with those of Mechanic, McAlpine, and Rosenthal (2001), who reported that, contrary to popular belief, the growth of managed care between 1989 and 1998 has not led to shorter office visits. Therefore, to understand the impact of managed

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care (and other features of health care organizations) on medical consultations, researchers must account for how the complexity and structural features of these organizations affect the basic interpersonal processes underlying communicative action. THE MEDIA CONTEXT: IMPACT OF THE INTERNET

From the information we consume to the interactions we have with others, media technologies (e.g., printing and telecommunications) have become an essential part of everyday living. Health care providers and patients do not exist independent of these technologies. Using the telephone to triage a patient’s health concern, faxing medical information to a clinic, and watching health news coverage on television are but some of the many ways clinicians and patients use and depend on various media for health-related purposes. Although any type of media may serve in this capacity, the one that has received the most attention recently, and the one examined within the framework of the ecological model, is the Internet. The Internet is different from other media technologies because of the sheer amount of information that users have access to, the speed with which they can access it, and the capability it gives users of interacting with anyone in the world who also has Internet access. Because 40 to 70% of Internet users go online for health information, support, and services (Aspden & Katz, 2001; Brown, 1998; Mittman & Cain, 2001), the Internet has the potential to significantly alter the way health providers and patients interact with one another. The Internet and Provider-Patient Communication

Increasing Patient Participation. For the patient, the ability to gather information through Internet searches and e-mail transactions could facilitate greater participation in medical care by expanding the patient’s knowledge base and perhaps giving the patient a stronger sense of control in managing his or her health. In this respect, the Internet may hasten the transformation of the provider-patient relationship from one of paternalism to one of shared decision-making and partnership (Bauer, 2000; Winker et al., 2000). Although I am not aware of any study testing this hypothesis, anecdotal evidence abounds. For example, in my own discussions with physicians, many have stories about patients who come in with a “stack of Internet printouts” related to their health concerns (see also Rice, 2001). In their survey of 220 New Jersey physicians, Aspden, Katz, and Bemis (2001) reported that most of the physicians had recently interacted with patients who wanted to discuss information gathered from the Internet. On the other hand, the Internet may have little effect on patient participation in light of other factors operating within the interpersonal context of medical care. For example, regardless of how informed they are, many patients may be reluctant to discuss their concerns with doctors if they think they are wasting the doctor’s time, are afraid of what the treatment may entail, or think the health issue is not within the doctor’s expertise (Rice, 2001; Roter & Hall, 1993; Street, Cauthen, et al., 1995). In their national survey of over 2000 respondents, Aspden and Katz (2001) found that, of patients who had recently gone online to seek health information, only 37% said they discussed the information with their doctors. Clinicians’ Attitudes Toward Information on the Internet. Health care providers vary greatly in their attitudes toward patients who have collected health information from the Internet. Some clinicians are threatened by highly motivated patients who might

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use the Internet to gain more knowledge about a health topic than a typical doctor possesses (Beck, 2001). Many physicians and health care organizations also are greatly concerned about the quality of health information on the Internet (e.g., Winker et al., 2000) and fear that patients’ health beliefs may be influenced by quacks or that patients may be duped into buying unnecessary or even dangerous products. On the other hand, some health care providers see the Internet as having a desirable effect on their interactions with patients. Aspden et al. (2001) reported that one-third of the doctors in their survey believed their patients’ use of the Internet had led to more productive consultations whereas only 14% thought it had a negative influence. These findings are consistent with a larger survey of Norwegian doctors who felt that patients’ use of the Internet was either unobtrusive or had a positive impact on doctor-patient interactions (Hjortdahl, Nylenna, & Aasland, 1999). Virtual Consultations. The increasingly widespread use of e-mail for personal and business purposes is also creating opportunities for providers and patients to interact in cyberspace, either in addition to or in lieu of face-to-face meetings. Although many clinicians are cautious in their use of the technology, a growing number are e-mailing patients to answer questions, offer advice, schedule appointments, and follow up on treatment (Borowitz & Wyatt, 1998; Rice, 2001). The irony of e-mail interaction is that e-mail is both a limiting and an empowering medium. On the one hand, e-mail is restrictive in that the interactants can only type words and symbols to communicate. It also lacks the spontaneity of face-to-face interactions in that messages may not be responded to for minutes, hours, days, or weeks. However, e-mail may not have the sensory richness and immediacy of a face-to-face exchange, yet it does provide opportunities for providers and patients to communicate more frequently, more efficiently, and perhaps even more effectively because the participants need not share the same location or time frame to interact with one another (Mandl, Kohane, & Brandt, 1998). Moreover, when individuals perceive a need to communicate with others and maintain productive relationships, they will work to overcome the constraints of the medium in order to accomplish their objectives (Walther, 1996). Thus, in the absence of nonverbal behavior, e-mail users have developed a number of symbols (emoticons) to signal affect, such as , !, :>, and ;). What research has been conducted on provider-patient e-mail exchanges indicates that most e-mail contact is initiated by patients who, in the large majority of cases, are providing information about their health or are requesting information about a diagnosis or treatment (Borowitz & Wyatt, 1998; Widman & Tong, 1997). Interestingly, e-mail may contribute to more egalitarian interactions, as online patients tend to be more assertive than face-toface patients and are more willing to use e-mail to seek second opinions (Rice, 2001). How clinicians respond (if at all) to e-mail requests varies considerably. In Eysenbach and Diepgen’s (1998) study, doctors’ responses to a fictitious patient’s request for information on a dermatological condition ranged from a simple acknowledgment of the receipt of the message to advice to see a doctor to actual diagnoses. In short, the Internet is beginning to have a noticeable and potentially transforming effect on the ways providers and patients communicate with one another. However, it is still unclear whether virtual consultations will replace the traditional face-to-face consultation or will simply expand the opportunities for provider-patient interaction. The medium has considerable potential for enhancing quality of care, but there remain a number of medical issues (e.g., the kinds of health problems that can be appropriately managed via the Internet), legal concerns (e.g., confidentiality), social issues (e.g., access by economically

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disadvantaged groups), and attitudinal obstacles (e.g., resistance to change) that must be addressed (Mandl et al., 1998; Winker et al., 2000). THE POLITICAL-LEGAL CONTEXT

The political-legal context of the medical consultation encompasses legislative and judicial actions pertinent to the delivery of medical care. Of all the contexts identified in the ecological model, this is the one least studied. Some investigators have examined malpractice claims resulting from communicative action (or inaction) in medical consultations. For example, in Levinson, Roter, Mullooly, Dull, and Frankel’s (1997) study, physicians who had at least two previous malpractice claims conducted shorter visits, spent less time orienting patients to the visit, and used less partnership building than did physicians who had never had a claim against them. In an analysis of plaintiffs’ depositions, Beckman, Markakis, Suchman, and Frankel (1994) found that many complaints focused on communication-related issues, such as deserting the patient, delivering information poorly, and failing to understand the patient’s and family’s perspective. However, the question addressed here is this: in what way does the political-legal context of medical care affect providers’ and patients’ communication during the consultation? With respect to legislation, several states recently have passed a “patient bill of rights” and related laws aimed at ensuring that health care organizations, particularly managed care organizations, provide fair and necessary medical care (Lare, 1997). Typically, these laws require that physicians provide full disclosure of medical options for patients, obtain informed consent before performing medical procedures, discuss reasonable alternative treatments, and provide timely services to patients in need (Ellis, 1997). On the one hand, patient protection laws might encourage (or pressure) health care providers to give more information, offer a more thorough discussion of treatment options, and use more partnership building. However, because of the clinicians’ other goals and motivations (e.g., to stay on schedule), state laws may have little impact beyond causing the distribution of more printed educational materials and increasing paperwork as patients sign informed consent documents. Relatedly, a clinician’s experience, directly or indirectly, with malpractice claims could influence his or her attitudes toward patients. For example, many physicians worry about lawsuits, which may contribute to a general distrust of patients (Shapiro et al., 1989). Will the shadow of litigation pressure clinicians to adopt a more cautious and guarded style of communicating with patients? Or will they instead use more patient-centered communication (e.g., be more informative, acknowledge patients’ concerns, accommodate patient preferences), as advocated by experts who claim these behaviors can lower malpractice risks (Beckman et al., 1994; Garr & Marsh, 1986; Sommers, 1985)? In short, the political-legal context surrounding the medical encounter is an important yet essentially unstudied topic in health communication. More research will be needed before we have a clear understanding of how clinicians’ experiences with the courts and legislatures influence their conduct in the consultation and, conversely, whether patients’ perceptions of legal recourse and rights affect how they interact with health care providers. THE CULTURAL CONTEXT: RACE AND ETHNICITY

Broadly construed, culture may be defined as a system of beliefs, values, actions, and symbols shared by a group of people (Gudykunst, Ting-Toomey, & Chua, 1988), and any number of social groups (e.g., teenagers, ranchers, the homeless, organizations) may have

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a defining set of cultural beliefs and practices. Of interest here is culture as it relates to race and ethnicity. Specifically, in what ways do race and ethnicity influence communication in medical consultations? This is an important question in light of possible racial disparities in medical care (Schulman et al., 1999) and the growing belief that health care providers need training to improve their intercultural communication competence (Culhane-Pera, Reif, Egli, Baker, & Kassekert, 1997; Morales, Cunningham, Brown, Liu, & Hays, 1999). Ethnicity as a Predispositional Influence on Communication

Ethnicity may be related to providers’ and patients’ communicative predispositions in at least three ways. First, and perhaps most obvious, providers and patients from different ethnic backgrounds often speak different languages or dialects (e.g., Spanish vs. English), making effective communication difficult (Morales et al., 1999; Rothschild, 1998). However, even when both parties technically speak the same language, there may be other problems related to culture-specific usages, metaphors, idioms, and stories (GeistMartin, Ray, & Sharf, 2003). For example, “hearing voices” might be considered a sign of insanity by Anglos but interpreted as a religious experience by Mexican-Americans (Quesada, 1976). Hypertension may mean high blood pressure to upper middle-class America, but to many poor, urban dwellers “hyper-tension” is the name of an acute illness caused by nervousness and stress (Blumhagen, 1980). In short, people will use language in the way they understand it to convey meanings that may not be shared by those from different ethnic groups. Second, preferred styles of communicating may vary across different ethnic groups, particularly with respect to assertiveness and expressiveness. In their cultural model of factors affecting patients’ willingness to participate in medical consultations, Kim et al. (2000) proposed that people from individualistic cultures (e.g., Anglos in the United States, native Western and Northern Europeans) tend to have independent self-construals that promote more direct, assertive, and expressive communicative styles. However, people from collectivist cultures (e.g., Asians) have interdependent self-construals that lead to communicative styles characterized by indirectness, respect for authority, and accommodation to others. The authors hypothesized that patients from individualistic cultures would be more willing to actively participate in medical encounters than would patients from collectivist cultures. Kim et al. indeed found that Chinese (Hong Kong) respondents had less positive beliefs about patient participation, were more apprehensive about communicating with doctors, and expressed less willingness to be assertive during medical consultations than did respondents from the United States. Third, people from different ethnic backgrounds often have different explanatory (Kleinman, 1988) or personal (Hampson, Glasgow, & Toobert, 1990) models of health and illness. A person’s model of health represents the person’s understanding of health, including beliefs about the cause of an illness, degree of personal control over health, and best ways to manage health problems. Such a model is considered a predisposing influence on communication in medical consultations because it represents the person’s view of what issues are relevant to a particular health condition. With respect to ethnicity, Fadiman (1997) provides an in-depth account of the experience of Laotian immigrants seeking health care for their child within the American medical system. What the family perceived as spirits capturing the child’s soul, the doctors understood as epilepsy. What the doctors saw as the necessary diagnostic tests, the family saw as foolish uses of technology that have nothing to do with the soul. Clearly, ethnic differences in health beliefs pose

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challenges for quality of care as providers and patients try to agree on what health issues should be discussed and how should they be managed. It is important to emphasize, however, that it is the cultural beliefs and practices associated with ethnicity and not ethnicity per se that account for differences in communicative predispositions. Thus, one may find few differences in the communication styles of patients of Japanese, Mexican, or Irish descent if they have been acculturated into the values and behaviors of a particular culture. For example, in Kim et al.’s (2000) study, Hawaiians, arguably at the crossroads of East and West, scored in between the Americans and Chinese with respect to their willingness to actively participate in medical encounters. Attitudes and Stereotypes Related to Ethnicity

Yet another way the cultural context may have an impact on communication in a consultation is with respect to ethnicity-related attitudes and stereotypes possessed by clinicians and patients. For example, some physicians have less favorable views of African-American patients than European American patients, seeing them as less likeable or more apt to abuse alcohol or not comply with medical advice (Van Ryn & Burke, 2000). In a study where physicians reviewed a medical record of a patient pictured as White or Black and as male or female, Schulman et al. (1999) found that doctors were less likely to recommended cardiac catheterization for the Black patient. In a study of patients’ perceptions of care, Kaplan et al. (1995) reported that minority patients perceived their physicians as engaging in less partnership building than did White patients, a disparity that may be attenuated when patients visit doctors of their own race (Cooper-Patrick et al., 1999). Other studies, however, found modest or no differences in provider-patient communication strictly in relation to ethnicity (see, e.g., Roter et al., 1988). Moreover, some findings are contradictory. Whereas Thompson, Lawson, Croughan-Minihane, and Cooke (1999) found that non-Whites were more likely to have do-not-resuscitate orders, Garcia, Romano, Chan, Kass, and Robbins (2000) reported just the opposite. The ecological model can provide some insight into the inconsistency of these findings. As mentioned earlier, health care providers assume and are typically granted greater control of the consultation. Thus, their stereotypes, whether related to race or other factors (e.g., age, sex, social class), will to some extent shape their strategies, communicative routines, and expectations. If the patient is passive, then the consultation will likely unfold in ways consistent with the clinician’s initial perception of the patient, which may be based on a stereotype. However, if the patient actively participates in the consultation, or if he or she has other attributes that negate the stereotype (e.g., a college education), then the health care provider will likely modify his or her behavior in light of the patient’s communicative action and other personal characteristics (see, e.g., Street, 1992b). To switch perspectives, very little research has examined how the patient’s perceptions of the provider’s ethnicity affect communication in a consultation. Because many Blacks have a general distrust of the White-dominated health care system (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999), one might expect people of color to be less open and trusting of White clinicians than doctors of their own ethnicity. Also, some of my colleagues have shared stories about how U.S. veterans refused medical care because the doctor was “Asian.” In summary, ethnic differences between a provider and a patient can pose serious challenges to effective communication, especially if one holds negative attitudes toward the other’s ethnicity or if the two differ in their communicative preferences and expectations for the consultation. However, as highlighted in the ecological model, ethnicity is but one of

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many factors that make up the interpersonal context of the consultation. Thus, researchers interested in understanding the role of race in medical care should strive to identify and study those situations where ethnicity, as well as other features of culture, appears to play a significant role in the communication process. EXPANDING OUR RESEARCH AGENDA

Thus far, I have used the ecological model as a framework for reviewing extant research on provider-patient communication and for highlighting ways in which the communication in medical consultations is or can be influenced by the interpersonal, organizational, political, legal, and cultural contexts within which these encounters take place. In closing, I discuss some of the implications of this analysis for future research. Attention to Cognitive-Affective Influences

As theorists and researchers, we need to work harder on understanding how the communicative events of medical encounters are shaped by processes within the cognitiveaffective domain. Although we have some understanding of how provider-patient communication is related to sociodemographic factors (e.g., age, education) and to a partner’s communicative action, we know much less about how the interactants’ goals, expectations, and perceptions of their partners affect what unfolds during the consultation. Yet, it is through the cognitive-affective influences that broader contextual influences will often emerge. Although an in-depth discussion of measurement strategies for tapping into these processes is beyond the scope of this chapter, several investigators have taken steps toward assessing patients’ expectations for care (see, e.g., Kravitz, Callahan, Azari, Antonius, & Lewis, 1997), patients’ beliefs about physicians’ role responsibilities (Larson & Rootman, 1976, Street, Cauthen, et al., 1995), physicians’ attitudes toward patients (Harris, Rich, & Crowson, 1985; Levinson, Stiles, Inui, & Engle, 1993), patients’ personal models of health (Hampson et al., 1990), and patients’ emotional states (e.g., anxiety; Gerdes & Guidi, 1987). However, few studies have linked these constructs to patterns of communication in medical consultations. In addition, hardly any research has explored the communicative consequences of the provider’s and patient’s goals for the encounter, the patient’s attitudes toward the provider’s attributes (e.g., age, ethnicity, medical specialty), the degree of trust in the provider-patient relationship, and the provider’s emotional state (e.g., fatigue, frustration) during the encounter. We must better our understanding of these processes if we are to answer the questions raised at the outset of this chapter. Use of Multiple Measures and Analytical Frameworks

Because communication is a complex phenomenon that can be studied from multiple perspectives, health communication researchers could benefit from using multiple modes of assessment and analytical frameworks (Roter & Frankel, 1992; Street, 1992a). Qualitative versus Quantitative Analyses. Traditionally, research on communication in medical consultations has fallen within two methodological camps. One camp examines statistical relationships between communication behavior, variables affecting the communication process, and outcomes following the interaction. Quantitative analyses allow investigators to discover trends within a sample or a population of medical

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encounters and determine what variables account for particular patterns of interaction (e.g., under what conditions are doctors more informative?) and outcomes (e.g., what patterns of communication predict a patient’s commitment to treatment?). The other camp takes a more qualitative approach, conducting discourse analysis, ethnographies, and interviews of individuals and focus groups. As Waitzkin (1991) has noted, qualitative analyses provide valuable insight into the complexities of discourse, the nuances of meaning, the human experience of health, and the ways in which social, political, and historical contexts impinge upon parts of the medical interaction. Given the advantages and limitations of each approach, a number of researchers have advocated using multiple methods of data analysis (Roter & Frankel, 1992). For example, in my own work, I have discovered that selected segments of medical discourse not only serve as exemplars to help contextualize statistically significant relationships (e.g., between partnership building and patient participation), but can be used to account for the negative cases, that is, where the predicted relationship did not emerge (Street, Gold, & McDowell, 1995; Street & Millay, 2001). Perceptual versus Behavioral Measures. Studies of health care providerpatient communication typically rely on either perceptual or behavioral measures of communication. Although measures of patients’ perceptions of clinicians’ communication (see, e.g., Buller & Buller, 1987; Lerman et al., 1990; Street, 1991) and the much less studied measures of clinicians’ perceptions of patients are easy to score and provide a subjective assessment of communication, they do not typically identify what behaviors created the perception and may be susceptible to perceptual biases (e.g., the halo effect). Behavioral measures, on the other hand, provide detailed information on the frequency and duration of certain communicative acts but often are laborious to gather and fail to fully capture the interpretive significance of different messages. Because there may be little correspondence between a behavioral measure (e.g., amount of information given) and its perceptual analogue (e.g., perceived informativeness) (Street, 1992a), researchers could employ both perceptual and behavioral measures or use measurement techniques that combine both methods (e.g., stimulated recall; see Frankel & Beckman, 1989) to capture both the subjective and objective elements of the communication process. Adopting a Contextual Approach to the Medical Consultation

The ecological model presented in this chapter highlights the importance of looking at a medical encounter not as an isolated event but as embedded within a number of contexts. Hence, not only should researchers examine how context impinges upon interpersonal processes affecting communicative action, they can also examine various health-related interactions that occur within a particular context. For example, health care consumers have considerably more communicative experiences within the health care system than simply talking to doctors. The telephone call to set up on appointment, talking to the triage nurse about whether a concern warrants medical attention, the encounter at the receptionist desk, the waiting time, and the follow-up (if any) to the consultation (e.g., reporting screening results, patient education) are all “peri-consultation” interactions that can affect a patient’s utilization of services, satisfaction with care, commitment to treatment, and use of alternative medicine, among other things. Moreover, what I have described so far could be the interactions associated with one trip to the clinic. Because most consultations deal with the management of chronic conditions, we also need to investigate the consequences of patients’ experiences as they make multiple passes through the health care system.

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West, C. (1993). Reconceptualizing gender in physician-patient relationships. Social Science and Medicine, 36, 57–66. Widman, L. E., & Tong, D. A. (1997). Requests for medical advice from patients and families to health care providers who publish on the World Wide Web. Archives of Internal Medicine, 157, 209–212. Winker, M. A., Flanagin, A., Chi-Lum, B., White, J., Andrews, K., Kennet, R. L., & DeAngelis, C. D. (2000). Guidelines for medical and health information on the Internet: Principles governing AMA websites. Journal of the American Medical Association, 283, 1600–1606. Wissow, L. S., Roter, D., Bauman, L. J., Crain, E., Kercsmar, C., Weiss, K., Mitchell, H., & Mohr, B. (1998). Patient-provider communication during emergency department care of children with asthma. Medical Care, 36, 1439–1450. Wissow, L. S., Roter, D., & Wilson, M. E. H. (1994) Pediatrician interview style and mothers’ disclosure of psychosocial issues. Pediatrics, 93, 289–295.

II Provider-Patient Interaction Issues Teresa L. Thompson

Originally, provider-patient interaction was the predominant area of research in the field of health communication. As editor of the journal Health Communication, for which I began accepting submissions in 1987, I found that almost all of the pieces I received in the early years focused on some aspect of the relationship between communication and health care delivery (i.e., the provision of services by health professionals). This emphasis has changed over the years, and researchers have broadened their perspective considerably, but the provider-patient interaction still remains a key area of study. The chapters in this part of the book reflect that emphasis. They focus mostly on what happens when a patient and a health care provider interact with each other. They review and critique the relevant research as well as provide practical suggestions for patients and providers and intriguing suggestions for future research. In essence, they set a research agenda for the study of provider-patient interaction for the 21st century. For a more general overview of provider-patient interaction, the reader is referred to Thompson and Parrott (2002). The first chapter in this part discusses communicative skill development. This topic, for the most part, has been examined by experts in the fields of communication, medicine, nursing, and public health, and its study has yielded rich and interesting insights into the health communication process. In fact, the best work on communicative skill development is theoretically grounded and provides new theoretical insights but also has practical applications. No only does it assess the communicative skills that are most important during provider-patient interaction, it tries to determine ways in which those skills can be improved. Although most of the research in this area has focused on the communicative skills of health care providers, the authors of this chapter, Don Cegala and Stefne Broz, also review studies that have examined the communicative skills of patients as they interact with their providers. Given the dyadic nature of all communication, focusing on either the provider or the patient alone would provide an incomplete picture of provider-patient interaction.

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To study provider-patient interaction, researchers must be familiar with the various available methods. Debra Roter and Kelly McNeilis review these methods in Chapter 6, appropriately titled “Methods for Studying Provider-Patient Interaction.” This chapter will be of great value to researchers interested in this area of study, as it thoroughly outlines the appropriate research techniques. The early portion describes quantitative methods, especially observational, interaction analysis techniques. It discusses the contexts in which these methods have been used and the data indicating their reliability and validity. It presents enough information to allow researchers to assess the appropriateness of a particular research method for a particular study. The chapter then describes qualitative or discourse analytic approaches that have yielded important insights into how health care providers and patients interact and thus deserve serious consideration by future researchers. In Chapter 7, Judith Belle-Brown, Moira Stewart, and Bridget Ryan examine the impact of provider-patient interaction on various outcomes. They focus on outcomes relevant to both patients and providers, including satisfaction with health care delivery and communication, patient compliance with health care regimens, medical malpractice suits, and health outcomes. The impact of health communication on health outcomes is perhaps the most intriguing topic within the field, although some have argued against our ability to link the two (Stiles, 1989). There are also others who would argue that the impact of health communication on medical malpractice suits is equally intriguing. In any case, there is little doubt of its importance. Another less studied but highly significant outcome is also covered in the chapter—time spent in the provider-patient interaction. The authors discuss research that has examined how different approaches to communication differentially impact this variable. There are several key variables of the communicative process that have not been specifically addressed within this handbook because of their generality. Chapter 4, in Part I, reviewed these variables, but there is one that is of such direct relevance to providerpatient interaction that it was deemed necessary to include a chapter on it—the issue of disclosure. Chapter 8, by Cathy Gilloti, is a fascinating and theoretically grounded treatise on this topic, with an emphasis on how disclosure impacts health communication, health care delivery, and health decision-making. The chapter reviews research on such issues as the disclosure of bad news, personal disclosure between patients and care providers, and informed consent. In the final chapter of this section, Jon Nussbaum, Sandra Ragan, and Bryan Whaley bring the discussion of health communication to a more sophisticated level by looking at some relevant patient characteristics that influence provider-patient interaction. This chapter focuses upon how provider-patient interaction differs when the patient is older, female, or a child. The chapter begins by considering elderly patients, a topic that is particularly relevant to the study of health communication given the graying of the population and the fact that elderly people typically need to seek out health care more frequently than do younger people. Elderly people also make different assumptions about health care delivery, and different assumptions are made about them. These factors and others cause health communication between older patients and their care providers to be different from that between younger patients and their care providers. Just as gender is a variable ofttimes neglected in medical research (Gabbard-Alley, 1995), it is typically not adequately studied in the field of health communication. This is surprising in light of our knowledge that gender impacts many communicative processes, that women experience somewhat different health problems than do men, and that women are more likely than men to seek out health care for themselves and for other family members. Research indicates that the dyadic communicative process operates differently

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when either the patient or the provider is a woman (or both are) than it does when both are men. Chapter 9 examines this intriguing fact. The chapter ends with a discussion of the developmental issues that become relevant when children are the recipients of health care. Developmental issues have in general been inadequately examined by researchers in communication, including health communication. What research does exist is reviewed in the final section of Chapter 9. The theoretically grounded discussion provides practical suggestions for communicating with children and promising research directions for those interested in further studying this important topic. Although the chapters in this section focus on different aspects of provider-patient interaction, there are some common themes. The overriding theme is that the providerpatient interaction is essential to health and the health care delivery process. Until recently, health care providers were taught to focus on medical issues only. Paying any attention to interpersonal issues was seen as a concession to salesmanship, and communicative skills were assumed to be intuitive rather than acquired (Korsch, 1989). The research surveyed in this section, however, makes clear that interpersonal issues play a central role in the health care delivery process. After all, the accuracy of a diagnosis, the understanding of a health problem, the likelihood of compliance with treatment regimens, and the probability of recovery are all influenced by the personal interaction between the provider and the patient. These chapters, then, transform the traditional medical model into a much more sophisticated conceptualization combining biological (physiological) and psychosocial factors. In doing so, they highlight the complexity of medical care and the health care delivery process. This complexity is apparent in the multitudinous variables that influence providerpatient interaction as well as in the sophistication of the methods that are required to assess such interaction and its effects. This complexity will also require future researchers to build upon the methods and go beyond the knowledge presented within these chapters. The remainder of this handbook makes apparent that health communication affects and is affected by many variables and processes beyond the provider-patient interaction. Nonetheless, the chapters in this section reveal that health communication processes cannot be understand without a foundational understanding of communication between health care providers and their patients. Communication impacts both health care delivery and health itself. REFERENCES Gabbard-Alley, A. S. (1995). Health communication and gender: A review and critique. Health Communication, 7, 35–54. Korsch, B. M. (1989). Current issues in communication research. Health Communication, 1, 5–9. Stiles, W. B. (1989). Evaluating medical interview process components: Null correlations with outcomes may be misleading. Medical Care, 27, 212–220. Thompson, T. L., & Parrott, R. (2002). Interpersonal communication in health care. In J. D. Daly & M. L. Knapp (Eds.), Handbook of interpersonal communication (pp. 680–725). Thousand Oaks, CA: Sage.

5 Provider and Patient Communication Skills Training Donald J. Cegala and Stefne Lenzmeier Broz Ohio State University

Research into various aspects of physician-patient communication has been conducted for approximately 30 years, and each year new studies are added to this vast and growing literature (Ong, DeHaes, Hoos, & Lammes, 1995; Pendleton, 1982; Roter, 1989; Thompson, 1994). A subset of this research is devoted to assessing the effects of interventions designed to train providers and patients in communication skills. For the most part, the impetuous for training providers is grounded in the desire to move away from a paternalistic biomedical model of provider-patient communication to a more patient centered biopsychosocial model (Emanuel & Emanuel, 1992). At the same time, patient communication skills training has been stimulated by research suggesting that patients’ active participation in their health care leads to greater satisfaction, increased compliance, and better health outcomes (Kaplan, Greenfield, & Ware, 1989; Leopold, Cooper, & Clancy, 1996). PROVIDER COMMUNICATION SKILLS TRAINING Database Selection

We conducted a Medline search of literature published from 1990 to the present using the keywords communication, skills, training, medical education, instruction, physician, doctor, and patient relations. Additionally, we examined relevant studies from the reference lists of the literature identified by the Medline search. We limited the time span of the database to focus on more recently published research and to make the database more manageable. Only complete studies on provider communication skills training were included here; review pieces, position papers, commentaries, letters, and method development pieces were consulted but are not included.

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We initially intended to examine communication skills training for several types of providers, but due to space limitations ultimately we ended up including only physicians. In particular, we focused on the training of practicing physicians, residents, or other postgraduate providers, thus excluding communication skills training for undergraduates in medicine, nursing, and related health professions. The relevant literature for just medical students and nurses, for example, is quite extensive (Hargie, Dickson, Boohan, & Hughes, 1998; Joos, Hickam, Gordon, & Baker, 1996; Kruijver, Kerkstra, Bensing, & van de Wiel, 2000; Kruijver, Kerkstra, Francke, Bensing, & van de Wiel, 2000; Makoul, 1999). Even within these limitations and exclusions, we cannot claim to have included all of the research on provider communication skills training that was published between 1990 and the present. However, we are confident that what is included is a good representation of what has been done in the area of communication skills training for practicing physicians. Upon reading 26 studies on provider communication skills training and related research, we were immediately struck by the lack of overall coherence and focus in the literature. For example, there appears to be little consistency in what is considered a communication skill, and there are a variety of ways in which communication is assessed across studies. Moreover, little effort has been made to provide an overarching framework for organizing provider communication skills, although some scholars have suggested a classification distinguishing between information exchange and relational development (e.g., SansonFisher & Cockburn, 1997), and others have organized skills according to the stage or component of the medical interview (e.g., Silverman, Kurtz, & Draper, 1998). However, scholars who conduct research into provider communication skills typically do not frame their work along either of these lines or offer an explicit alternative structuring principle. To make matters worse, very little information is typically reported about what specific communication skills were taught, and often when skills are reported, there is incongruity between the stated objectives of the intervention and the instrument used to assess training effects. Overall, making sense of the literature on provider communication skills training and critiquing it beyond issues of method and results is by no means easy or straightforward. Table 5.1 summarizes key aspects of each study we examined. It should be noted that in constructing Table 5.1 we extracted aspects of the studies that were particularly relevant to communication skill issues. There may be other aspects of these studies worth considering that are not addressed here. Many of the studies listed in the table were also reviewed by Hulsman, Ros, Winnubst, and Bensing (1999), and the interested reader is recommended to access their report. Due to space limitations, we have opted not to discuss the details of the studies but rather to report them in table format for the reader to examine. We will limit our comments to observations about general trends and needed areas of research. Overview of Provider Training Research

Less than 30% of the studies reported in Table 5.1 had a design adequate for assessing the effects of training interventions (i.e., randomized control with pre- and posttest). Most of the studies used a pre- and postassessment to examine a single group of participants all of whom were exposed to a communication skills training intervention. Additionally, in most of these studies the participants were either members of a convenience sample (e.g., residents in a rotation) or volunteers (e.g., practicing physicians who agreed to participate). Needed is more research that employs a randomized control group with preand posttesting.

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TABLE 5.1

Design and Sample a

RC; E n = 24; Cn = 24; primary care residents.

RC; E n = 20; Cn = 14; pediatric residents.

NRC; P-P; E n = 28; Cn = 20; primary care residents.

P-P; single group; 9 GPs.

Source

Roter et al., 1990

Lewis et al., 1991

Smith et al., 1991

Bowman et al., 1992

Focus: psychosocial, data gathering, & interview organization skills. Specific skills: ?

Skillsc

Focus: promote children’s participation in the medical interview. Specific skills: building rapport w/children; checking on children’s understanding of medical information; handling incorrect or inadequate information provision from children; agenda setting with parent and child; facilitating expression of concerns. 4-week rotation in psychosocial Focus: psychosocial skills. Specific skills: ? medicine; partially learner-determined objectives; lecture; discussion; demonstrations/ modeling; role-play w/feedback; supervised interviews w/RPs. 18 weekly 2-hr. sessions; small Focus: psychiatric interviewing skills. group, role-play w/feedback. Specific skills: ? facilitation; checking and clarifying comments, empathic statements, open Qs, establishing eye contact, seeking patient’s views, establishing realistic goals.

Readings; group discussion; role-play; videotaped practice w/feedback with SPs; live interviews w/feedback with RPs; 1 month psychosocial rotation. Instructional videotape; readings; postinterview self-assessments; 1 hr. and 15 min.

Interventionb

Es improved in knowledge, attitudes, and skills.

E physicians addressed more recommendations to child or child and parent.

Es had more open Qs, fewer leading Qs, SPs rated as having better com. skills.

Communication-Specific Results d

continued

Immediate: more open Analysis of video w/RP Qs, less closed Qs; immediately after more social Qs, less intervention and after 2 yrs. psychological Qs; more checking out. Long-term: maintained

Participants’ self-assessment of knowledge, attitudes, and skills associated with psychosocial medicine.

Analysis of video w/RP; self-reported satisfaction.

Analysis of video w/SP, SP report of physician, patient self-reports, physician chart notes.

Assessment

Descriptive Summary of Studies of Health Care Provider Communication Skills Training

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P-P; single group; 18 GP residents.

RC; P-P; Short: E n = 15; Cn = 15; Long: E n = 20; no C; primary care physicians.

Posttest only, single group; 78 senior registrars, senior house officers, nurses, and others. RC; P-P; E n = 15; Cn = 11 primary care residents.

Kaaya et al., 1992

Levinson & Roter, 1993

Faulkner et al., 1995

Smith, Mettler, Stoffelmayr, et al., 1995

Design and Sample a

Source

Skillsc

Focus: psychological component of 8-week rotation in psychiatry; primary care. instructional video; role-play; group discussion; videotaped Specific skills: taking full history of pain; explore health beliefs; exploring interviews w/ RPs and family and social factors; feedback. acknowledging patient’s symptoms; summarizing physical findings; reframing by connecting psychological to life events. Focus: patient-centered interviewing. Short: 4 hrs.; lecture and Specific skills: eliciting patient’s discussion; Long: 2.5 days, concerns; use more open Qs and less learner-determined closed Qs; giving information about objectives; practice illness and therapy; engaging in interviews w/RPs and psychosocial discussion; asking feedback. patient’s opinion; more listening, less talking; summarizing what patient says; allowing patient to tell story without interruption. Focus: giving distressing information. 2-day program; recorded Specific skills: ? role-play w/SP; group discussion; learner-determined objectives. 4-week rotation in Focus: psychosocial skills psychosocial; partially Specific skills: ? learner-determined objectives; lecture/

Interventionb

TABLE 5.1 (Continued)

more open Qs, less closed Qs; increased social over psychological Qs and checking out. Increase in Qs about pain site; more exploration of health beliefs; more acknowledging of patient symptoms.

Communication-Specific Results d

Residents’ self-reports of confidence in and knowledge of psychosocial matters.

Analysis of recorded role-play w/SP.

E residents scored higher on all measures.

Training effects on 3/6 skills.

No effects from short Analysis of recorded visits intervention; Long: Es with 10 RPs (5 pre, 5 post); used more open Qs; global affect ratings on asked for opinion anger, anxiety, dominance, more; lower negative friendliness, affect ratings. responsiveness, interest.

Analysis of videotaped role-plays w/another trainee.

Assessment

99

4.5 hrs. over three 90-minute sessions; videotaped role-play w/SP.

RC; P-P; E n = 22; Cn = 20; primary care physicians and residents.

P-P; single group; 169 physicians, nurses, social workers, and others in cancer care.

Joos et al., 1996

Maguire, Booth et al., 1996

3- or 5-day workshop; learner-determined objectives; instructional videos; role play w/feedback.

2 interventions (see focus); 8 hrs. in two 4-hr. sessions 1 week apart; lecture, roundtable discussion; practice w/SP; role-play based on segments of interviews w/RPs.

—

RC; P-P; EHn = 22; PDn = 23; Cn = 24; primary care physicians.

Smith, Lyles, Mettler, Marshall, et al., 1995e Roter et al., 1995

discussion; live demonstration/modeling; role-play; supervised interviewing w/RPs. —

Focus: emotion handling skills (EH); problem-defining skills (PD). Specific skills: EH: asking about feelings; listening more, talking less; following up on signs of emotional stress; complimenting effort; legitimizing patients’ views/feelings; expressing empathy; expressing partnership or support; providing reassurance. PD: resisting immediate follow-up of first concern; asking “anything else?”; negotiating time; starting with open Qs; facilitating utterances; assessing psychosocial aspects; probing for patients’ understanding; expressing concern; clarifying patients’ expectations. Focus: physicians’ awareness of patients’ concerns. Specific skills: identifying and eliciting patient’s agenda; negotiating a realistic interview agenda; identifying patient’s attributions/expectations; relationship-building skills. Focus: skills promoting and inhibiting patient disclosure of information. Specific skills: promoting skills: open Qs; Qs w/psychological focus;

—

Analysis of interviews w/SPs; patients’ assessment of desired concerns/services; patients’ perceptions of information received; patient satisfaction; patient compliance. Analysis of interviews w/SPs immediately after intervention and 6 months later.

Analysis of interviews w/RPs and one SP; physicians’ recognition of psychosocial problems and emotional distress; clinical proficiency; patients’ reported reduction in emotional stress.

RPs’ assessment of residents’ skills; patient satisfaction.

continued

Increase in 3/6 promoting skills immediately and 6 months later.; decrease in inhibiting

Es had greater proportion of visits in which all concerns were met; Es’ patients perceived greater information giving.

EHs used more EH utterances; PDs used PD utterances; PDs recognized more psychosocial and emotional behaviors in patients; PDs proficient; PDs’ patients had more reduction in stress.

Es rated higher on confidence; Es’ patients more satisified.

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P-P; single group; 206 physicians, nurses, social workers, psychologists, and others in cancer care.

P-P; single group; 24 pediatric residents.

P-P; single group; 9 oncologists, 1 psychiatrist, 3 fellows.

P-P; 178 oncologists.

NRC; P-P; E n = 35; Cn = 33 primary care physicians. RC; P-P; E n = 19; Cn = 23; internal medicine residents.

Maguire, Faulkner, et al., 1996

Morgan & Winter, 1996

Baile et al., 1997

Fallowfield et al., 1998

Greco et al., 1998

Langewitz et al., 1998

Design and Sample a

Source

1.5- or 3-day workshop; readings; instructional video; learner-determined objectives; role-play w/SPs and feedback. .5 day per week over 13 weeks or 5-hr. workshop; discussion in triads. 1.5-day seminar; lecture; demonstration interviews w/SPs; role-play; progress

4.5 hrs. in 3 sessions; lecture; panel discussion; live demonstration, role-play; group discussion. 3-day workshop; lecture; instructional videotape; readings; practice interviews w/SP and feedback; personal awareness exercise; learner-determined objectives.

3- or 5-day workshop; learner-determined objectives; instructional videos; role-play.

Interventionb

Focus: patient-centered interviewing Specific skills: showing empathy in greeting; acknowledging initial

Focus: patient-centered interviewing Specific skills: ?

Focus: skills for stressful interactions. Specific skills: ? initiating discussion of patient’s concerns; accessing patient’s knowledge of illness; asking Qs to elicit illness concerns; encouraging elaboration of illness concerns; summarizing illness concerns; moving patient to discuss other concerns; managing own feelings. Focus: breaking bad news Specific skills: ?

Focus: disclosure of psychological problems. Specific skills: open Qs; Qs w/psychological focus; clarifying psychological focus; screening Qs; educated guesses. Focus: delivering bad news. Specific skills: ?

clarifying psychological focus; educated guesses; empathy.

Skillsc

TABLE 5.1 (Continued)

Communication-Specific Results d

Residents evaluated program highly; 2/5 residents showed subtle improvement. Improvement on 6/10 skills.

Improvement on 7/12 items. Es better on 10/14 skills.

RP assessment of physicians’ communication. Analysis of interview w/SP; global ratings.

Analysis of interviews w/SPs; Improvement on self-confidence ratings. participants’ self-rated confidence.

Participants’ self-appraisal.

Analysis of interviews w/SP; residents’ evaluation of training program.

behaviors in 3/6 immediately and 6 months later. Analysis of interviews w/SPs. Increase in use of Qs w/psychological focus; clarification of psychological concerns; open Qs.

Assessment

101

Same as Smith et al., 1995

RC; P-P; E n = 31; Cn = 30; primary care residents.

P-P; single group; 15 oncologists, 2 fellows.

Smith et al., 1998

Baile et al., 1999

2 5-hr. workshops 6 weeks apart; learner-determined objectives; lecture; readings; instructional video; role-play w/feedback.

8 hrs. over 2 days; lecture; role-play.

NRC; P-P; E n = 10; Cn = 8; primary care physicians.

Roter et al., 1998

assessment meetings; one-on-one sessions during clinical work with RPs.

complaints; taking up emotions; clarifying consultation reasons; summarizing patient’s statement of concern; announcing history-taking phase; structuring consultation; sharing evaluation; conveying detailed information as desired by patient. Focus: patient-centered interviewing. Specific skills: information giving in both biomedical and psychosocial domains; open Qs; expressing concern, empathy, reassurance; positive exchanges; using facilitators, interpretations, and signals of interest. Focus: patient-centered interviewing. Specific skills: encouraging patient responses; allowing the patient to talk; responding to emotions; not completely pursuing biomedical data initially; including psychosocial data initially; not dominating the interview; building rapport; following up on patient-initiated topics, effectively managing the interview. Additional skills w/SPs: providing information; motivating behavioral change; supporting patients’ achievement in attaining health goals; managing somatizing patients. Focus: breaking bad news (BBN) and managing difficult patients (MDP). Specific skills: (BBN) creating an appropriate setting; eliciting patient’s perception of the problem; assessing patient’s desire for information; giving information in small chunks; checking Improvement on 18/21 BBN skills; improvement on 4/15 MDP skills.

Participants’ self-rated self-efficacy.

continued

Es greater on knowledge, attitudes; greater on 2/10 data-gathering skills w/RPs; 10/10 data-gathering skills w/SPs; 10/14 informing and motivating skills; 8/14 managing somatization skills.

Es used more open Qs and facilitators; rated as expressing more interest and friendliness.

Residents’ knowledge; attitudes, and commitment to psychosocial medicine; patient satisfaction and self-reported physical functioning; analysis of interviews w/SP and RPs.

Analysis of interviews w/RPs; patient satisfaction; global affective tone ratings.

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Design and Sample a

RC; P-P; E n = 32; Cn = 29; primary care physicians, nurse practitioners, others.

P-P; single group; 85 primary care physicians.

P-P; single group; 911 physicians over 5 yrs.

Source

Brown et al., 1999

Costanza et al., 1999

Stein & Kwan, 1999

5-hr. seminar; lecture; instructional video; live demonstration; readings; role-play w/SP. 1-day workshop; lecture/ discussion; instructional video; role-play.

2 4-hr. workshops; readings; lecture; role-play; taped office visits w/RPs.

Interventionb

Es improvement on self-assessments (no C group comparison).

No improvement in communication skills; improvement in 1/3 stage counseling skills. Improvement on all 18 self-assessment skills.

SP assessment of physicians’ skills.

Communication-Specific Results d

Patients’ judgments of physicians’ skills; 1-item patient satisfaction measure; physicians’ self-assessments.

Assessment

Focus: skills for enhancing effectiveness Self-assessments of interviewing skills and efficiency of interviews (EE) and immediately after and handling difficult patients (DP). 3 months after intervention. Specific skills: (EE) using open Qs; asking if there is “anything else;” asking about psychosocial issues; exploring barriers to adherence; using own feelings as diagnostic information; negotiating and setting agendas; guiding effective information flow. (DP) determining which behaviors are difficult and why; stating impasse or

patient’s understanding frequently; avoiding medical jargon; empathizing with and exploring patient’s emotions; providing a summary; negotiating a treatment strategy. (MDP) ? Focus: skills for building effective relationships with patients (ER); negotiation skills, especially for disagreement situations (NS). Specific skills: (ER) listening actively; communicating concern, understanding, respect; responding to patient’s feelings. (NS) ? Focus: counseling intervention (mammography screening). Specific skills: ?

Skillsc

TABLE 5.1 (Continued)

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P-only, single group; pediatricians, family physicians, gynecologists. ? groups of 20–30.

Hardoff & Schonmann, 2001

30- to 45-minute session; role-play w/SPs and feedback.

1-day workshop in 2 sessions; role-play w/SPs and feedback from SPs.

Improvement in 1/5 skill categories; improvement in overall score across all 5 categories.

Self-reported using of learned principles.

Postinterview evaluation by SPs.

Self-report 1 month after intervention.

b SP

a RC

= randomized control; NRC = nonrandomized control; P-P = pre- and posttest; P-only = posttest only; E = experimental (intervention) group; C = control group. = simulated (or standardized) patient; RP = real patient; role-play alone = other participant or instructor assumed a role, as opposed to a SP or RP. c Qs = questions; ? alone = insufficient information about skills or no report of skills; ? followed by skills = uncertainty about skills listed, derived from assessment instrument rather than a description of skills. d Improvements, etc., reflect statistically significant results involving E and C or pre- and posttest comparisons. Assessments not mentioned were nonsignificant or not specifically communication related. e This is the same study as Smith et al., 1995 reported above, except for a different assessment.

P-P, single group; 7 pediatric intensive care fellows.

Vaidya et al., 1999

dilemma; expressing common goals; using empathy to diffuse strong emotions. Focus: breaking bad news. Specific skills: ? allowing parents to talk/ask Qs; expressing sympathy and compassion; avoiding medical jargon; using appropriate body language; asking about parents’ understanding; discussing assessment and prognosis; discussing rationale and approach to therapy; leaving room for hope; asking psychosocial Qs; relieving parents of blame/guilt; preparing parents; greeting parents warmly; letting parents tell their story; showing interest; encouraging parents to ask Qs. Focus: improving skills in communicating with adolescants. Specific skills: careful listening; a nonjudgmental approach; assuring confidentiality; others?

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Regarding the samples, it is no surprise that the vast majority of studies (80%) involved primary care physicians (i.e., family medicine physicians, general internists, or pediatricians), as these physicians have consistently been the focus of most of the published research on physician-patient communication and have traditionally been the most responsive to and concerned about communication matters. We were surprised and encouraged to see communication skills training studies that used cancer providers (about 20% of the studies examined here). There is some indication that oncologists and other health professionals who deal with cancer patients do not receive adequate training in communicating with patients, particularly with respect to “breaking bad news” and handling strong, emotionally-charged interview contexts (Baile et al., 1999). Future research on communication skills training should encompass studies using various medical specialists, including surgeons. Overall, the researchers employed a wide variety of instructional strategies, but the emphasis was appropriately placed on strategies that involved modeling (e.g., instructional videos) and practice (e.g., role-playing) with feedback. These are the instructional strategies that are most likely to promote the learning of complex behaviors, such as communication skills, as well as increase the efficacy of newly acquired skills (Bandura, 1997). What is not clear from most of the literature, however, is the extent to which communication skills are retained beyond immediate assessment following an intervention. Some studies assessed long-term retention of skills, ranging from 3 months to 2 years (Bowman, Goldberg, Millar, Gask, & McGrath, 1992; Maguire, Booth, Elliott, & Jones, 1996; Stein & Kwan, 1999), with reasonably positive results. However, more research is needed to examine the long-range effects of communication skills training interventions. Perhaps even more important than assessment of the long-term effects of training is better alignment between the communication skills that are taught and the instruments and procedures for assessing the learners’ performance. Several of the studies examined here had apparent or blatant mismatching of skills and assessment instruments (Baile et al., 1999; Bowman et al., 1992; Brown, Boles, Mullooly, & Levinson, 1999; Greco, Francis, Buckley, Brownlea, & McGovern, 1998; Kaaya, Goldberg, & Gask, 1992; Roter, Cole, Kern, Barker, & Grayson, 1990; Smith et al., 1995; Stein & Kwan, 1999; Vaidya, Greenberg, Patel, Strauss, & Pollack, 1999). Consequently, some researchers reported significant effects on communication skills that were not directly taught or reported nonsignificant results for skills that were not actually assessed. Much more care is needed in specifying communication skills and locating or developing assessment instruments that accurately reflect the learners’ skills. Given the extent of the misalignment in the current training literature, it is sometimes difficult to place much confidence in the obtained results. In a real sense, there are more studies of provider communication skills training than there are available results with which to accurately judge the effectiveness of such training. Despite these potential problems, overall there is a good deal of support for the hypothesis that provider communication skills training is indeed effective (see Table 5.1). At the same time, however, it must be recognized that about 30% of the training studies relied solely or primarily on the participants’ self-perceptions of communication skills to assess the effects of training. Although self-perceptions of communication competence are related to the evaluation of communicative performance, they cannot be used confidently as the primary or sole means for assessing the effects of communication skills training. Finally, very few studies have examined the impact of provider communication skills training on patients’ health-related outcomes (Joos et al., 1996; Roter et al., 1995). Although it is important to establish that skills training results in significant improvement in providers’ communication, the ultimate goal of such training is to enhance the quality

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of health care. Considerable research into physician-patient communication has demonstrated a significant link between communication and patients’ health outcomes (Ong et al., 1995; Pendleton, 1982; Roter, 1989; Thompson, 1994), but this research is only indirectly connected to training studies per se. More effort is needed to translate basic research findings into key communication skills and to organize them into a conceptual framework that guides the design of training interventions. PATIENT COMMUNICATION SKILLS TRAINING

As is evident from the last section and reviews of research into physician-patient communication in general (Korsch & Negrete, 1972; Ong et al., 1995; Pendleton, 1982; Roter, 1989; Thompson, 1994), considerable attention has been devoted to the communication skills of providers (especially physicians) over the last 30 years. In comparison, relatively little research has been devoted to patients’ communication. Given the paucity of research into patient communication skills training, we opted not to set narrow inclusion criteria. We used Anderson and Sharpe’s (1991) review of research into communication skills training as a starting point for our literature search, although we also conducted a Medline search covering the years included in their review. In addition, we conducted a Medline search of research published from 1990 to the present, and we examined relevant studies from the reference lists of all the published reports identified by the Medline searches. Our search resulted in 19 studies of patient communication skills training. Some key features of these studies are reported in Table 5.2. It should be noted that the table omits many details. Our intent was to include only information that was relevant to our concerns, namely, the communication skills that have been addressed and the methods of instructing patients. For further information, the interested reader might begin with Anderson and Shapre’s (1991) review, then access later studies as needed. Communication Skills

The potential list of relevant, specific communication skills for patients is probably as long and varied as a list of individual patients and their medical problems. However, most of the research into patient communication skills training has focused on information exchange skills. Our own research suggests that information exchange involves three fundamental skills: information seeking, information provision, and information verifying (Cegala, 1997; Cegala, Coleman, & Warisse, 1998; Cegala, McNeilis, Socha McGee, & Jonas, 1995; Cegala, Socha McGee, & McNeilis, 1996). Below, we use these concepts to organize our review of communication skills addressed in the patient training literature. Information Seeking. As noted in Table 5.2, most of the attention given to patients’ communication has focused on information seeking—question asking in particular. Because research suggests that patients often do not engage in information seeking (e.g., Beisecker & Beisecker, 1990; Ley, 1988; Parrott, 1994; Street, 1991), it is not surprising that researchers have directed their efforts this way. Despite extensive attention to question asking within the patient communication skills training literature, more research is needed. The impact of such training on patients’ question-asking is moderate, at best. Only about half of the studies reported significantly more question-asking among trained patients (Cegala, McClure, Marinelli, & Post, 2000; Cegala, Post, & McClure, 2001; Dow, Verdi, & Sacco, 1991; Robinson & Whitfield, 1985; Rost, Flavin, Cole, & McGill, 1991; Roter, 1977; Socha McGee & Cegala, 1998;

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RC, P-P; E1n = 50, E2n = 50, Cn = 50. RC, P-P; E n = 33, Cn = 26. RC; E n = 35, Cn = 32.

Anderson et al., 1987

Tabak, 1988

Greenfield et al., 1988

— RC, P-P; E n = 23, Cn = 22.

RC, E1n = 100; E2n = 100; Cn = 50. RC, E n = 115 Cn = 107

Design a

Roter, 1984c Greenfield et al., 1985

Merkel et al., 1983

Roter, 1977

Source

TABLE 5.2

Audiotape; self-report; blood sugar. Audiotape; self-report.

Videotape; self-report.

— Audiotape; self-report.

Self-reports.

Audiotape; Self-report; Patient records.

Data Sources

Even male:female, mean age 50, mean H.S.+ education, diabetics. Mean age 35, H.S.+ education, 81% female.

Male, 60% minority, low to moderate education, mean age 58, hypertensives.

— Mostly male, mean age 55, mean H.S.+ education, ulcer patients.

No information reported other than they were adults.

Poor African American women, median age 50, hypertensives and diabetics

Patient Sample

14 residents.

11 physicians, 45 residents.

1 health educator (not a physician).

— 8 physicians.

10 family practice residents.

2 physicians, 1 nurse practitioner.

Provider Sample

Booklet encouraging patients to ask questions, model questions provided.

Same as Greenfield et al., 1985.

— 23-minute F-T-F; reviewed patient chart, encouraged to ask questions, addressed barriers to question asking, encouraged rehearsal of questions. 14-minute videotape, modeling of question-asking and raising concerns about treatment.

10 minute F-T-F; focus on question-asking protocol, eliciting patients’ expectations, some practice without feedback. 4-minute video followed by a F-T-F session in which major points were summarized and prompts for questions given.

Interventionb

Summary of Key Features of Research Into Patient Communication Skills Training, 1977 to Present

Question-asking.

Information seekingd ; negotiation skills.

Question-asking; disclosure of problems/concerns.

Question-asking; provision; verifying all in the form of suggestions in the the video. — Information seekingd ; negotiation of medical decisions.

Question-asking; verifying.

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RC, P-P; E n = 24, Cn = 24.

RC (physicians only) E n = 80, Cn = 60.

Dow et al., 1991

Lewis et al., 1991

Videotape; self-report.

Videotape; self-report.

Patient self-report.

RC; E1n = 13, E2n = 18, Cn = 18.

Study 2

Audiotape; self-report; physiological measures.

Patient self-report; physician’s report of patients’ question-asking.

RC, P-P; NRC, P-P; En = ? Cn = ? Sample totals = 105 and 43.

RC; E n = 29, Cn = 24.

Thompson et al., 1990 Study 1

Kaplan et al., 1989d

Parents and children, mean ages 38 and 8.5.

Even male:female, mean age 31, mean H.S. education, psychiatric patients.

OB/GYN patients; average age 30; white, upper midlle class.

OB/GYN patients, white upper middle class.

Hypertensive patients: mean age 54, mean grammar school education, 68% female, 62% Spanish speaking. Breast cancer patients: mean age 47, H.S.+ education, female.

34 residents.

1 person role playing a physician.

2 physicians.

1 physician.

?

?

Written list of possible OB/GYN concerns with instructions to write at least 3 questions to ask the physician: instructed to take question list into exam room. E1 received a checklist of information to obtain; asked to think about and write questions to ask physician; instructed to take question list into the exam room. E2 received a 2-sentence printed message urging patients to feel free to ask questions. 2.5 weeks, of inpatient sessions, 5, 90 minute sessions, F-T-F practice and modeling focused on question-asking about medications. Some attention to stating concerns and symptoms. 10 minute videotape, one for parent, one for child; modeling; practice for children.

Same as Greenfield et al., 1985.

continued

Children: question-asking, raising concerns. Parents: questionasking, agenda setting, expressing concerns.

Question-asking; stating concerns and symptoms.

Question-asking.

Question-asking.

Information seekingd ; negotiation skills.

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Audiotape; self-report. Physician rating.

Audiotape; patient self-report; physician perceptions.

Videotape; patient self-report.

RC; E n = ?, Cn = ? NRC; E n = 40, Cn = 40.

RC; E n = 59, Cn = 61.

RC; E n = 10, Cn = 10.

Butow et al., 1994

McCann & Weinman, 1996

Socha McGee & Cegala, 1998

Frederikson & Bull, 1995

Audiotape; self-report; blood sugar.

Data Sources

RC, P-P; E n = 30, Cn = 31.

Design a

Rost et al., 1991

Source

Mean age 37, 6 males, 14 females, 30% African American.

Mean age 43, 61% female, various social classes.

Cancer patients (N = 142), 47% inpatients, 84% female. 80 patients.

Inpatients, diabetics, mean age 40, mean H.S.+ education, 60% female.

Patient Sample

10 family practice residents.

1 physician.

1 physician.

1 physician.

22 fellows and residents.

Provider Sample

TABLE 5.2 (Continued)

Printed handout encouraging question-asking; model questions. Printed leaflet encouraging patients to think about their problem and what they hope the physician can do, tell the physician concerns clearly and concisely, listen and ask questions. Brief printed leaflet encouraging patients to take a more active role, identify problems, consider causes and possible treatments, state concerns clearly, and ask questions about diagnosis and treatment. 30-minute F-T-F session focusing on the patients’ concerns and goals for the interview; patients encouraged to ask questions on specific topics, aided in preparing questions, encouraged to provide detailed information about symptoms, encouraged to check on their understanding of information periodically throughout the interview.

Modified version of Greenfield et al. plus printed materials with audio models and role playing exercises.

Interventionb

Question-asking; information provision and verifying.

Question-asking; reference to information provision.

Question-asking; reference to information provision.

Question-asking; overcoming barriers to question asking. Question-asking.

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NRC; E n = 16; Cn = 17.

—

RC; E n = 377?, Cn = 385? RC; E n = 50, C1n = 49, C2n = 51.

Audiotape; patient and physician self-reports.

—

Audiotape; patient and physician self-reports.

Self-report.

Mean age 72; 51% white; 52% H.S. or less education; 42% male.

8 primary care physicians, 1 chief resident.

—

Printed booklet same as Cegala, Marinelli et al. 2000, except modified for elderly; 30-minute F-T-F session devoted to patients’ concerns, going over booklet responses, aiding in organizing thoughts and listing questions.

Printed booklet addressing question-asking with space for practice; section on provision with question guides and space for taking notes, section on information verifying with examples: mailed to patients 2–3 days prior to interview. —

25 primary care physicians.

Mean age 45; 29% males; 27% minority patients; education from grammar school to graduate school.

—

Printed prompt card with sample questions.

13 physicians.

New patients, mostly college educated.

Question-asking; information provision and verifying.

—

Question-asking; information provision and verifying.

Question-asking.

b F-T-F

a RC

= randomized control; NRC = nonrandomized control; P-P = pre- and posttest; E = experimental (intervention) group; C = control group. = face-to-face; intervention given just prior to seeing the physician unless otherwise stated. c This is the same study as Roter (1977) except that here the content of questions was coded and examined. d Includes question-asking and controlling moves designed to elicit information. e This is a review of the results of Greenfield et al., 1985, 1988. However, data for two new samples are also reported, as listed in the table. f This is the same study as Cegala, Marinelli, et al., 2000, except here data are reported on training and patients’ discourse, whereas Cegala, Marinelli, et al., 2000 focused on training and patient compliance.

Cegala, McClure, et al., 2000f Cegala, et al., 2001

Cegala, Marinelli, et al., 2000

Fleissig et al., 1999

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Thompson, Nanni, & Schwankovsky, 1990). A partial explanation for these results may be found in the differences among instructional methods used by researchers (to be discussed below). Yet there are probably other factors that contributed to the inconsistency in results. From a communication perspective, one might characterize the overall definition and treatment of question asking as somewhat unsophisticated. Most researchers did not consider the topic of questions in their coding or analyses, and thus virtually all attention was focused on form rather than content. Even so, form was treated rather simply: Questions were typically defined only as direct information-seeking utterances. Our research and others’ work has shown that patients (and physicians) seek information in other ways besides direct questioning (Cegala, 1997; Cegala, Marinelli, & Post, 2000; Frankel, 1990). Yet, for the most part, these other forms of information seeking have been ignored in the research on patient communication skills training. Likewise, the basic definition of information seeking appears to be overly simple. For example, few researchers distinguished between questions that seek new knowledge and those that seek to clarify information already given (Anderson, DeVellis, & DeVellis, 1987; Cegala, McClure, et al., 2000; Cegala et al., 2001; Robinson & Whitfield, 1985; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). Aside from definitional issues, more attention to individual differences among patients should be included in training procedures intended to enhance information seeking. Although research studies have documented that patients do not ask physicians many questions, little attention has been devoted to understanding why this is so. Based on observation of over 200 physician-patient interviews, the first author believes that many patients simply are uncertain about what to ask physicians during a medical interview. Many patients do not formulate questions until they have had time to process what the physician has said or do not realize their lack of understanding until they try to follow the recommended treatment or explain their illness to someone. Thus, in addition to the cultural and personality factors that may affect patients’ willingness to engage in information seeking, factors such as patients’ knowledge about illness and disease, their ability to prepare questions in advance of an interview, and their ability to ask questions spontaneously during an interview are likely to affect the process and outcome of information seeking. These and other matters await researchers’ attention. Information Provision. Comparatively little attention has been given to training patients in information provision. A few studies minimally address provision by merely encouraging patients to express concerns or to report symptoms clearly and completely (Dow et al., 1991; Frederikson & Bull, 1995; Lewis, Pantell, & Sharp, 1991; McCann & Weinman, 1996; Merkel, Rudiskill, & Nierenberg, 1983). Cegala and associates appear to have devoted the most attention to patients’ information provision. In two studies, an entire section of a training booklet was devoted to information provision (Cegala, McClure et al., 2000; Cegala et al., 2001), and in a third study patients were assisted with provision matters during a face-to-face session (Socha McGee & Cegala, 1998). Patients’ provision utterances were not coded in the latter study, but a detailed coding procedure was applied in the former studies. Overall, the results indicated that trained patients engaged in significantly more information provision than untrained patients. Considerably more research is needed on the effects of patient training in information provision skills. The provision of information by patients is critical to the physicians’ ability to accurately diagnose and treat medical problems (Frederikson, 1995; Hampton,

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Harrison, Prichard, & Seymour, 1975; Peterson et al., 1992; Sandler, 1980). In addition, the efficiency and effectiveness with which patients provide information during a medical interview may have a significant bearing on the length of medical interviews, an issue of great importance within the context of managed care (Dugdale, Epstein, & Pantilat, 1999; Goold & Lipkin, 1999). Most research into patient communication skills training has found no difference in the length of interviews involving trained versus untrained patients (Butow, Dunn, Tattersall, & Jones, 1994; Cegala, McClure, et al., 2000; Cegala et al., 2001; Greenfield, Kaplan, & Ware, 1985; Greenfield, Kaplan, Ware, Yano, & Frank, 1988; Roter, 1977; Socha McGee & Cegala, 1998; Thompson et al., 1990). But given that most of the research on training has emphasized patients’ information seeking, little is known about how patients’ enhanced information provision skills may affect interview length. In light of increasing concerns about the cost of health care, there is good reason to devote more attention to the effects of training patients in provision skills. Training patients to present information effectively and efficiently may have the potential to reduce interview time while maintaining or even enhancing health care quality. Additionally, patients who efficiently and effectively provide information to their physicians may encourage them to be more complete and detailed in their own information provision, as some research suggests that training one member of the medical dyad influences the other member’s discourse in similar ways (Cegala, McClure, et al., 2000; Cegala et al., 2001; Levinson & Roter, 1993; Roter et al., 1998). Information Verifying. What we call information verifying skills are used by individuals in daily conversations to check on information. They are especially important in task-oriented communication, where accurate understanding and reception of information is critical to accomplishing a coordinated objective. In addition, information verifying skills are important to physician-patient communication because they enhance not only immediate understanding but also recall (Bertakis, 1977; Kupst, Dresser, Schulman, & Paul, 1975; Ley, 1988). When information verifying has been addressed in the patient communication skills literature, the focus has been on clarifying questions (Robinson & Whitfield, 1985; Rost et al., 1991; Roter, 1977). Research by Cegala and associates (Cegala, McClure, et al., 2000; Cegala et al., 2001) has expanded information verifying to include utterance categories beyond questions clarification. Repetitions are utterances that either request a repeat or provide a complete or partial repeat of another’s utterance, whereas formulations are summaries of key points of either one’s own discourse, another’s discourse, or part of a conversation to which multiple parties have contributed. Also included is bracketing, which involves the forecast that additional information will follow or that additional information will be sought on a particular topic. Although bracketing is not an information-verifying move per se, bracketing utterances serve to enhance understanding by allowing conversational partners to suspend immediate, potential misunderstandings about information exchange matters. Although Cegala and associates have expanded the categories of information verifying, verifying categories have shown the weakest training effects (Cegala, McClure et al., 2000; Cegala et al., 2001). Cegala et al. (2001) speculate that the reason is that informationverifying skills have been given the least amount of attention in their training materials. The issue of how much attention is devoted to training is keyed to related matters about differences in training intervention procedures. Accordingly, this is a good transition to

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the next section, which addresses the instructional strategies used to train patients in communication skills. Communication Skills Training Interventions

As indicated in Table 5.2, a variety of strategies have been used to instruct patients in communication skills. The extent to which these strategies actually teach patients communication skills is a major focus of this section. A related topic of concern is the issue of balancing instructional effectiveness with the cost and efficiency of dissemination. Whereas the specifics of interventions used in training research are quite varied, all interventions employ either face-to-face instruction, videotape, printed materials, or some combination of these. Anderson and Sharpe (1991) found in their meta-analysis that the largest effect sizes were associated with patient communication skills interventions that included modeling and/or practice components. Our review of training research is consistent with their finding, although we did not conduct a formal meta-analysis. The studies we examined that included a modeling component resulted in trained patients asking more questions, providing more information, and/or being more compliant than their untrained counterparts (Anderson et al., 1987; Cegala, Marinelli, et al., 2000; Cegala, McClure, et al., 2000; Cegala et al., 2001; Dow et al., 1991; Rost et al., 1991; Roter, 1977). Only two studies that included a modeling component resulted in no difference between trained and untrained patients’ question asking (Anderson et al., 1987; Tabak, 1988), and one study found no difference in clinical outcomes (Rost et al., 1991). We found a similar pattern among studies that included a practice component. Most of these showed improvements in question asking, information eliciting, information provision, and clinical outcomes or compliance (Cegala, Marinelli, et al., 2000; Cegala, McClure, et al., 2000; Cegala et al., 2001; Dow et al., 1991; Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). The role of modeling and practice in communication skills training research has at least two important implications. First, it underscores the idea that communication skills instruction requires more than merely reminding or encouraging patients to ask questions, or to provide complete and clear information, or to negotiate treatment options. Most patients benefit from, indeed require, seeing someone model these behaviors, and afterwards they need the opportunity to practice the skills, ideally with feedback. Most teachers of communication know and apply these principles in their instruction, and those who design and execute communication skills training for patients should apply them as well. However, a second and related implication of modeling and practice is the potential high cost of providing effective communication skills training. Modeling can often be achieved with audio- or videotape, as was done in most of the studies reviewed here. Although playback equipment is not expensive, the production of good quality audio and especially video materials is not cheap. Given the extensive media exposure, if not media sophistication, of most individuals in today’s society, there is little choice but to employ instructional materials of good quality or risk losing credibility or the patients’ interest. Inclusion of a practice component is even more costly. Most of the training studies that had a practice component accomplished it through face-to-face instruction (Cegala et al., 2001; Dow et al., 1991; Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989; Lewis et al., 1991; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). Only two studies had a practice component without face-to-face instruction. The second

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part1 of the intervention used by Rost et al. (1991) included printed take-home materials that encouraged patients to role-play as a means of practicing communication skills. The printed booklet used by Cegala et al. (2000) and Cegala et al. (2001) contained space for patients to write concerns, symptoms, and questions after reading material designed to prompt their thinking about these matters. Interestingly, although significant results were obtained in both of these latter studies, the results were considerably stronger in the second study (Cegala et al., 2001), where reading of the booklet was followed by a 30-minute face-to-face session. The point here is that most clinicians cannot afford to hire personnel to conduct faceto-face training sessions with patients. Typically, nurses are not able to perform such instructional tasks due to lack of time or skill. Accordingly, clinicians face a dilemma— either lose the benefits of incorporating modeling and practice components into patient communication skills training or pay the high costs of developing and delivering these components. Future research into patient communication skills training thus should examine ways of maximizing instructional effectiveness and ease of dissemination without increasing costs. This is a huge challenge. Several studies have shown that the most effective means of instructing patients involves tailoring objectives and content to each individual’s needs (Burke & Dunbar-Jacob, 1995; Dunbar-Jacob, Burke, & Pyczynski, 1995; Kreuter, Farrell, Olevitch, & Brennan, 2000; Rudd, 1995). It is likely that the success of several of the communication skills training studies employing face-to-face instruction was due in part to the customizing of instruction that occurred (Cegala et al., 2001; Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). The need to tailor instruction, besides underscoring the importance of face-to-face practice, makes the development of effective modeling materials even more difficult and costly. Recent research using computer technology has been successful in tailoring health messages to individuals’ needs and stages of change (Kreuter et al., 2000). However, there is a considerable difference between tailoring messages that are designed to inform patients and tailoring instruction that is intended to teach complex skills, like communication. Still, computer technology in the form of CD-ROMs (e.g., Walker & Ross, 1995), particularly interactive CD-ROMs, and Web sites may provide a means for instructing patients in communication skills using modeling relatively cheaply. Those who would provide communication skills training through the use of computers, or any intervention strategy for that matter, must also confront the issue of accessibility. The patients who could benefit most from communication skills training are probably the least likely to have access to computers or know how to use them even if they were made available. Meeting the challenge to find effective, cheap, and easily disseminated instructional materials for patient communication skills training will require the talent and effort of many scholars. The current research into patient communication skills training suggests that meeting this challenge would be well worth the time and effort needed. CONCLUSION

We conclude this chapter with a few comments about additional directions for future research into communication skills training. Our first observation has to do with long-term

1 The first part of the Rost et al. (1991) intervention took place in a hospital setting and included a face-to-face practice session with a health educator.

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training effects. Overall, few studies have examined the effects of training beyond immediate postintervention assessment. Some of the provider communication skills training studies examined long-term effects (Bowman et al., 1992; Maguire, Booth, et al., 1996; Stein & Kwan, 1999), but none of these employed a randomized, controlled design with pre- and posttesting, and one assessed only the participants’ self-judgments of communication skills (Stein & Kwan, 1999). None of the patient communication skills training studies systematically examined long-term effects. A few studies assessed outcomes beyond immediate training, but there is no way of determining if the results were due to long-term effects of the training procedure (Greenfield et al., 1988; Rost et al., 1991; Roter, 1977). Given the high cost of training for both providers and patients, it is important for future research to determine the long-term effects of training interventions and what, if any, means of periodic reinforcement may be needed to maintain participants’ communication skills. A second and related observation concerns the generalization and transference of communication skills. This issue is perhaps less significant for providers than it is for patients. Regarding patients, most of the training efforts have occurred within a primary care context. Although this context is centrally important to modern health care given the prevalence of managed care, it is not clear if communication skills learned within that context are easily transferred to other health settings, such as communication with specialists, for example. Although some research into provider training has examined specialties, especially oncology, no research to our knowledge has examined the effects of patient communication skills training within a specialty context. Thus, we do not know if existing training interventions require modification to be used in specialty contexts, nor do we know if communication skills are transferred from primary care to specialty settings. Given the illnesses (e.g., cancer, heart disease, and stroke) that account for major health care costs in dollars and human suffering, future research should examine communication skills training in specialty settings and determine the extent of transference of communication skills training from one medical setting to another. A related research task is to determine how patients’ individual characteristics (e.g., age, gender, ethnicity, education) interact with communication skills training interventions. For example, we do not know to what extent patients’ education relates to the kind of intervention methods used for delivering instruction (e.g., print, face-to-face, videotape). Such factors, to the extent they do interact with interventions, could be of considerable importance in addressing issues of cost, dissemination, and accessibility of communication skills training interventions. Finally, it is clear from this review that communication skills training has been directed to either providers or patients. In only one study were both providers and patients trained in communication skills (Lewis et al., 1991). Whatever else we know about communication, we do know that it is a process dependent upon the contributions of all participants. Understanding the process and developing ways to improve it must involve paying attention to all conversational partners’ contributions and perceptions. From what has been done so far, we have reasonably clear evidence that communication skills training has positive effects on providers and patients. Future research needs to systematically examine the relative and interactive contributions of providers and patients. For example, we need randomized, controlled studies that allow for outcome comparisons between groups in which only one participant (provider or patient) is trained and groups in which both are trained. Such research will allow for the determination of the relative contributions of trained participants and, more importantly, will lay the ground work for interventions designed to enhance training effects by interfacing and complementing the skills taught to

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providers and patients. Such research designs will not be implemented easily or cheaply. They will require multiple equivalent sites to minimize possible confounding among trained and untrained participants. They will also likely require an initial focus on a limited range of illnesses (e.g., diabetes, hypertension) with clearly implied outcomes that can be related to the participants’ discourse and to training intervention effects. Additionally, this type of research will require significant grant support and interdisciplinary research teams. Given the recent interest in communication and health by such funding agencies as National Cancer Institute (NCI), this type of research is not only possible, it is in demand. REFERENCES Anderson, L. A., DeVellis, B. M., & DeVellis, R. F. (1987). Effects of modeling on patient communication, satisfaction, and knowledge. Medical Care, 25, 1044–1056. Anderson, L. A., & Sharpe, P. A. (1991). Improving patient and provider communication: A synthesis and review of communication interventions. Patient Education and Counseling, 17, 99–134. Baile, W. F., Kudelka, A. P., Beale, E. A., Glober, G. A., Myers, E. G., Greisinger, A. J., Bast, R. C., Jr., Goldstein, M. G., Novack, D., & Lenzi, R. (1999). Communication skills training in oncology: Description and preliminary outcomes of workshops on breaking bad news and managing patient reactions to illness. Cancer, 86, 887–897. Baile, W. F., Lenzi, R., Kudelka, A. P., Maguire, P., Novack, D., Goldstein, M., Myers, E. G., & Bast, R. C., Jr. (1997). Improving physician-patient communication in cancer care: Outcome of a workshop for oncologists. Journal of Cancer Education, 12, 166–173. Bandura, A. (1997). Self-efficacy: The exercise of control. New York: Freeman. Beisecker, A. E., & Beisecker, T. D. (1990). Patient information-seeking behaviors when communicating with doctors. Medical Care, 28, 19–28. Bertakis, K. D. (1977). The communication of information from physician to patient: A method for increasing patient retention and satisfaction. Journal of Family Practice, 5, 217–222. Bowman, F. M., Goldberg, D. P., Millar, T., Gask, L., & McGrath, G. (1992). Improving the skills of established general practitioners: The long-term benefits of group teaching. Medical Education, 26, 63–68. Brown, J. B., Boles, M., Mullooly, J. P., & Levinson, W. (1999). Effect of clinician communication skills training on patient satisfaction: A randomized, controlled trial. Annals of Internal Medicine, 131, 822–829. Burke, L. E., & Dunbar-Jacob, J. (1995). Adherence to medication, diet, and activity recommendations: From assessment to maintenance. Journal of Cardiovascular Nursing, 9, 62–79. Butow, P. N., Dunn, S. M., Tattersall, M. H., & Jones, Q. J. (1994). Patient participation in the cancer consultation: Evaluation of a question prompt sheet. Annals of Oncology, 5, 199–204. Cegala, D. J. (1997). A study of doctors’ and patients’ patterns of information exchange and relational communication during a primary care consultation: Implications for communication skills training. Journal of Health Communication, 2, 169–194. Cegala, D. J., Coleman, M. T., & Warisse, J. (1998). The development and partial test of the Medical Communication Competence Scale (MCCS). Health Communication, 10, 261– 288. Cegala, D. J., Marinelli, T., & Post, D. M. (2000). The effect of patient communication skills training on treatment compliance in primary care. Archives of Family Medicine, 9, 57–64.

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Cegala, D. J., McClure, L., Marinelli, T. M., & Post, D. M. (2000). The effects of communication skills training on patients’ participation during medical interviews. Patient Education and Counseling, 41, 209–222. Cegala, D. J., McNeilis, K. S., Socha McGee, D., & Jonas, A. P. (1995). A study of doctors’ and patients’ perceptions of information processing and communication competence during the medical interview. Health Communication, 7, 179–203. Cegala, D. J., Post, D., & McClure, L. (2001). The effects of patient communication skills training on the discourse of elderly patients during a primary care interview. Journal of the American Geriactics Society, 49, 1505–1511. Cegala, D. J., Socha McGee, D., & McNeilis, K. S. (1996). Components of patients’ and doctors’ perceptions of communication competence during a primary care medical interview. Health Communication, 8, 1–28. Costanza, M. E., Luckmann, R., Quirk, M. E., Clemow, L., White, M. J., & Stoddard, A. M. (1999). The effectiveness of using standardized patients to improve community physician skills in mammography counseling and clinical breast exam. Preventive Medicine, 29, 241– 248. Dow, M. G., Verdi, M. B., & Sacco, W. P. (1991). Training psychiatric patients to discuss medication issues. Effects on patient communication and knowledge of medications. Behavior Modification, 15, 3–21. Dugdale, D. C., Epstein, R., & Pantilat, S. Z. (1999). Time and the patient-physician relationship. Journal of General Internal Medicine, 14(Suppl. 1), S34–S40. Dunbar-Jacob, J., Burke, L. E., & Pyczynski, S. (1995). Clinical assessment and management of adherence to medical regimens. In P. M. Nicassio & T. W. Smith (Eds.), Managing chronic illness: A biopsychosocial perspective (pp. 313–349). Washington, DC: American Psychological Association. Emanuel, E. J., & Emanuel, L. L. (1992). Four models of the physician-patient relationship. Journal of the American Medical Association, 267, 2221–2226. Fallowfield, L., Lipkin, M., & Hall, A. (1998). Teaching senior oncologists communication skills: Results from phase I of a comprehensive longitudinal program in the United Kingdom. Journal of Clinical Oncology, 16, 1961–1968. Faulkner, A., Argent, J., Jones, A., & O’Keeffe, C. (1995). Improving the skills of doctors in giving distressing information. Medical Education, 29, 303–307. Fleissig, A., Glasser, B., & Lloyd, M. (1999). Encouraging out-patients to make the most of their first hospital appointment: To what extent can a written prompt help patients get the information they want? Patient Education and Counseling, 38, 69–79. Frankel, R. (1990). Talking in interviews: A dispreference for patient-initiated questions in physician-patient encounters. In G. Psathas (Ed.), Interaction competence (pp. 231–262). Washington, DC: University Press of America. Frederikson, L. G. (1995). Exploring information-exchange in consultation: The patients’ view of performance and outcomes. Patient Education and Counseling, 25, 237–246. Frederikson, L. G., & Bull, P. E. (1995). Evaluation of a patient education leaflet designed to improve communication in medical consultations. Patient Education and Counseling, 25, 51–57. Goold, S. D., & Lipkin, M., Jr. (1999). The doctor-patient relationship: Challenges, opportunities, and strategies. Journal of General Internal Medicine, 14(Suppl. 1), S26–S33. Greco, M., Francis, W., Buckley, J., Brownlea, A., & McGovern, J. (1998). Real-patient evaluation of communication skills teaching for GP registrars. Family Practice, 15, 51–57. Greenfield, S., Kaplan, S., & Ware, J. E., Jr. (1985). Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520–528.

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Greenfield, S., Kaplan, S. H., Ware, J. E., Jr., Yano, E. M., & Frank, H. J. (1988). Patients’ participation in medical care: Effects on blood sugar control and quality of life in diabetes. Journal of General Internal Medicine, 3, 448–457. Hampton, J., Harrison, M., Prichard, J., & Seymour, C. (1975). Relative contributions of history-taking, physical examination, and laboratory investigation to diagnosis and management of medical outpatients. British Medical Journal, 2, 486–489. Hardoff, D., & Schonmann, S. (2001). Training physicians in communication skills with adolescants using teenage actors as simulated patients. Medical Education, 35, 206–210. Hargie, O., Dickson, D., Boohan, M., & Hughes, K. (1998). A survey of communication skills training in UK schools of medicine: Present practices and prospective proposals. Medical Education, 32, 25–34. Hulsman, R. L., Ros, W. J., Winnubst, J. A., & Bensing, J. M. (1999). Teaching clinically experienced physicians communication skills: A review of evaluation studies. Medical Education, 33, 655–668. Joos, S. K., Hickam, D. H., Gordon, G. H., & Baker, L. H. (1996). Effects of a physician communication intervention on patient care outcomes. Journal of General Internal Medicine, 11, 147–155. Kaaya, S., Goldberg, D., & Gask, L. (1992). Management of somatic presentations of psychiatric illness in general medical settings: Evaluation of a new training course for general practitioners. Medical Education, 26, 138–144. Kaplan, S. H., Greenfield, S., & Ware, J. E., Jr. (1989). Assessing the effects of physicianpatient interactions on the outcomes of chronic disease. Medical Care, 27(Suppl. 3), S110– S127. Korsch, B. M., & Negrete, V. F. (1972, August). Doctor-patient communication. Scientific American, 227, 66–74. Kreuter, M., Farrell, D., Olevitch, L., & Brennan, L. (2000). Tailoring health messages: Customizing communication with computer technology. Mahwah, NJ: Lawrence Erlbaum Associates. Kruijver, I. P., Kerkstra, A., Bensing, J. M., & van de Wiel, H. B. (2000). Nurse-patient communication in cancer care. A review of the literature. Cancer Nursing, 23, 20–31. Kruijver, I. P. M., Kerkstra, A., Francke, A. L., Bensing, J. M., & van de Wiel, H. B. M. (2000). Evaluation of communication training programs in nursing care: A review of the literature. Patient Education and Counseling, 39, 129–145. Kupst, M. J., Dresser, K., Schulman, J. L., & Paul, M. H. (1975). Evaluation of methods to improve communication in the physician-patient relationship. American Journal of Orthopsychiatry, 45, 420–429. Langewitz, W. A., Eich, P., Kiss, A., & Wossmer, B. (1998). Improving communication skills: A randomized controlled behaviorally oriented intervention study for residents in internal medicine. Psychosomatic Medicine, 60, 268–276. Leopold, N., Cooper, J., & Clancy, C. (1996). Sustained partnership in primary care. Journal of Family Practice, 42, 129–137. Levinson, W., & Roter, D. (1993). The effects of two continuing medical education programs on communication skills of practicing primary care physicians. Journal of General Internal Medicine, 8, 318–324. Lewis, C. C., Pantell, R. H., & Sharp, L. (1991). Increasing patient knowledge, satisfaction, and involvement: Randomized trial of a communication intervention. Pediatrics, 88, 351– 358. Ley, P. L. (1988). Communicating with patients: Improving communication, satisfaction and compliance. New York: Croom Helm.

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6 The Nature of the Therapeutic Relationship and the Assessment of Its Discourse in Routine Medical Visits Debra Roter Johns Hopkins University School of Public Health

Kelly S. McNeilis Southwest Missouri State University

HISTORICAL PERSPECTIVE

In one manner or another, the construct of the physician-patient relationship and its expression through the medical dialogue has been described or alluded to in the history of medicine since the time of the Greeks (e.g., Plato’s The Gorgias) and in the modern medical and social sciences literature for the past 50 years (Engel, 1977; Freidson, 1970; Parsons, 1951; Szasz & Hollender, 1956). Nevertheless, historians of modern medicine have tracked an undeniable decline in the centrality of communication to the care process. In his study of the history of physicians and patients, Shorter (1985) attributes the denigration of communication to the ascendancy of the molecular and chemistry-oriented sciences as the predominant 20th-century medical paradigm. This change was fundamental in directing medical inquiry away from the person of the patient to the biochemistry and pathophysiology of the patient. It was not coincidental that the practice of interviewing patients from a written outline designed around a series of yes/no hypothesis-testing questions replaced unstructured medical histories at this point in the history of medicine. White (1988) lamented that, because of this shift toward a biomedical focus, physicians fail to recognize that “apples are red and sweet as well as being composed of cells and molecules” (p. 6). Lacking a pathway to collaboration and partnership, many see the need for fundamental reform in medicine’s vision. Just as the molecular and chemistry-oriented sciences were adopted as last century’s medical paradigm, incorporation of the patient’s perspective into medicine’s definition of patient need has been suggested as the medical paradigm of the 21st century (Engel, 1988; White, 1988; McWhinney, 1989). The medical dialogue is the fundamental instrument through which the battle over paradigms is being waged; the patient’s problem will be anchored in either a biomedical and disease context or a broader and more integrated illness context that incorporates the

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patient perspective (Mishler, 1984). In other words the nature of the patient’s problem will be established and the visit’s agenda and therapeutic course will be determined by whichever paradigm wins out. A debate of long-standing intensity related to the assessment of medical dialogue centers on the distinctions between quantitative and qualitative evaluative approaches (Roter & Frankel, 1992). The heat of the debate is derived not merely from a disagreement over the relative advantages and disadvantages of qualitative and quantitative methods but from the broader perception that these methods reflect incompatible paradigms. Advocates of these methods have not only argued their relative merits but maintained unusually critical and intellectually isolated positions. A well-recognized list of attributes distinguish the quantitative and qualitative paradigms and their adherents. The quantitative worldview has been characterized as hypothetico-deductive, particularistic, objective, and outcome-oriented; its researchers are logical positivists. Quantitative researchers typically present statistical summaries and correlates of objectively measured patient and provider behaviors. In contrast, the qualitative worldview has been characterized as social anthropological, inductive, holistic, subjective, and process-oriented; its researchers are phenomenologists (Reichardt & Cook, 1969). Qualitatively inclined researchers rarely assign numerical values to their observations but prefer instead to record data in the language of their subjects, almost always presenting actual speech in the form of verbatim transcripts of audio- and videotape recordings. An allegiance to a particular paradigm implies not only a worldview but also a paradigm-specific method of inquiry and even styles of presentation. There is a certain parallel between the systems of open-sea navigation described by the cultural anthropologist Thomas Gladwin and the debate among researchers over qualitative and quantitative methods (Gladwin, 1964). The system of navigation represented by the European tradition is distinguished by the plotting of a course prior to a journey’s beginning that subsequently guides all decisions regarding location. The extent to which the ship “stays the course” is a testament to the navigator’s skill. The Islanders of Truk face the problem of managing long distances in uncertain conditions in a very different manner than the Europeans. The Trukese navigator has no preestablished plan of any kind; experience from previous voyages and information at hand during the current sailing trip is all that the Trukese navigator uses for guidance. The purpose of this chapter is to provide a broad context for understanding the nature of the therapeutic relationship and the assessment and consequences of its discourse in routine medical visits. We review the major coding schemes and perspectives used to study patient-physician interaction and highlight the complementarity of the qualitative and quantitative approaches to this type of analysis. Finally, we suggest future directions for research in this area. THE THERAPEUTIC RELATIONSHIP

Bioethicists Emanuel and Emanuel (1992) suggested that power relations in medical visits are expressed through several key elements, including (1) who sets the agenda and goals of the visit (the physician, the patient, or the physician and patient in negotiation); (2) the role of patients’ values (assumed by the physician to be consistent with their own, jointly explored by the patient and physician, or unexamined); and (3) the functional role assumed by the physician (guardian, advisor, or consultant). Application of these core elements can be useful in recognizing the variety of power relations expressed in models of the physician-patient relationship. Table 6.1 summarizes the four relational styles or models that result from various configurations of patient and physician control.

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TABLE 6.1

Types of Physician-Patient Relationships Physician Control

Patient Control

Low High

Low

High

Default Consumerism

Paternalism Mutuality

Mutuality, the model named in the lower right quadrant, occurs when the participants are on a relatively even footing. Because power in the relationship is balanced, the goals, agenda, and decisions are the result of negotiation between the participants; both the patient and the physician become part of a joint venture. The medical dialogue is the vehicle through which patient values are explicitly articulated and explored. Throughout this process, the physician acts as a counselor or advisor. Paternalism, the most prevalent but not necessarily most efficient or desirable model, is shown in the upper right quadrant. In this model, the physician dominates agenda and goal setting and decision making in regard to both information and services; the medical condition is defined in biomedical terms, and the patient’s voice is largely absent. The physician’s obligation is to act in the patient’s “best interest.” The determination of the patient’s best interest, however, is largely based on the assumption that the patient’s values and preferences are the same as those of the physician. In essence, the physician acts as the patient’s guardian makes decisions regardless of the patient’s preferences. Even when both parties have mutually agreed upon a paternalistic relationship, the patient and physician are often on so unequal a footing that the patient is unable to shape the relationship to the same degree as the physics. The possibility exists, then, that the patient may adopt a passive role, not fully aware of alternatives or able to negotiate a more active stance (President’s Commission, 1982). In the third model, consumerism, the typical power relationship may be reversed. The patient may set the goals and agenda for the visit and take sole responsibility for decision making. Patient demands for information and technical services are accommodated by a cooperating physician, and patient values are defined and fixed by the patient and unexamined by the physician. The consumerist model redefines the medical encounter as a marketplace transaction. Caveat emptor (“let the buyer beware”) rules the transaction, with power resting with the buyer (patient), who can make the decision to buy (seek care) or not as he or she sees fit (Haug & Lavin, 1983). The physician’s role is to act as a technical consultant, obliged to provide information and services contingent upon patient preferences (and within professional norms). Fault can also be found with the consumerist model, for it overly narrows the physician’s role. Patients may limit physician participation in decision making without appreciating the full benefits that inclusion of the physician’s perspective can add (Roter & Hall, 1992; Schneider, 1998). When patient and physician expectations are at odds or when needed change in the relationship cannot be negotiated, the relationship may come to a dysfunctional standstill, a kind of relationship default, as represented in the upper left of the table. A default situation is characterized by unclear or contested common goals, unclear or neglected patient values, and an uncertain role for the physician. It is here where medical management may be least effective, with neither the patient nor the physician sensing progress or direction. A frustrated and angry patient may make inappropriate time and service demands and

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ultimately drop out of care completely because of failed expectations. The physician may view the patient as “difficult and hateful” and view the patient’s visits as representing the most frustrating aspects of medicine. Unless alignment of the relationship is undertaken through direct intervention, the relationship is likely to continue to unravel and ultimately fail. Such interactional styles, combined with the communicative requirements of the medical interaction, are the very elements health communication researchers study. The following sections cover the quantitative and qualitative approaches that researchers employ to study communication elements and relational styles in physician-patient interaction. MEASUREMENT OF COMMUNICATION DYNAMICS Quantitative Approaches to Interaction Analysis

It is only since the mid-l960’s that the actual dynamics of the therapeutic dialogue have been observed in any systematic manner and an attempt to recast this aspect of medicine as science has been made. Increased methodological and technological sophistication has made observation and analysis of the medical visit easier over the years, and indeed the number of empirical studies of physician-patient communication doubled from l982 to l987 (Roter, Hall, & Katz, 1988). A review of studies directly assessing patient-provider communication and its correlates found 28 different analysis systems used in 61 studies (Roter et al., 1988). Half the studies used audiotape as their primary method of observation; the remaining studies were equally likely to use videotape or impartial observers. In recent years, there appears to be a trend away from the use of observers to creating “hard copy” records of the interaction—a trend no doubt related to the increasing complexity of analysis schemes that favor a verbatim record. The choice of video- or audiotape as a means of observation was closely related to the kind of research undertaken. Research done to facilitate physician training and medical education favored the use of videotape, whereas audiotape was the frequent choice in more general research. Much of the training research made use of videotape not only as a source of evaluative data but as an intervention tool as well. Roter et al. (1988) reported a great deal of diversity in the analysis approaches they reviewed. More than half the investigators employed an analysis system uniquely designed for their current study, and the other investigators used a coding approach, usually with some minor modifications, employed in a prior study by themselves or other investigators. The most commonly used process analysis systems were those of Bales, Roter, and Stiles, but even these were used in only five to seven studies each. Some half dozen other systems were used in at least one prior study. Most unique systems attempted to abstract and categorize the factual information physicians communicated during the encounter. The 17 studies of this kind ranged from very simple counts of information to complex assessments of exactly what was communicated as well as what that information might mean to the patient. Unlike process analysis, content systems were generally limited to the one coded category of information giving and did not attempt to put it within the broader context of physician and patient communication. The studies did, however, generally relate the communicated information to patient recall. A more recent review of communication assessment instruments covering the period 1986 to 1996 identified a total of 44 instruments (Boon & Stewart, 1998). Approximately one third of these were designed to evaluate student performance in communication skills training programs; of these, only 3 were used by an investigator other than the system’s

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author, although not within the past 15 years. Also identified in the review were 28 systems used primarily for the assessment of communication in research studies. In this category, 4 systems were used by multiple investigators. As was true in the Roter et al. (1988) study, the most commonly used systems were those of Bales, Stiles, and Roter. In addition, the patient-centered method was used by multiple investigators. A brief overview of each of these four systems is provided below. Bales’ Process Analysis System. Concerned with group dynamics, Bales (l950) developed an analysis system for assessing patterns of interaction and communication and decision-making processes within small groups. Since its original conceptualization, Bales’ approach has been more widely modified than any other single approach to understanding the dynamics of the medical encounter. Bales’ system focuses on ways in which the process and structure of communication among persons in a group reflects how they differentially participate in problem solving. It is based on the premise that problem solving occurs in two domains, the task domain and the socioemotional domain. Interaction is described in terms of 12 mutually exclusive categories. Six are conceived as affectively neutral and ascribed to the task domain (e.g., gives suggestion or asks for orientation), and 6 are viewed as representing the socioemotional domain. These latter are divided into positive and negative affective categories (e.g., agrees or disagrees; shows tension release or shows tension). Analysis using Bales’ system focuses on literal transcripts of the verbal events of an encounter. These events are operationally defined as the smallest discriminable speech segments to which the rater can assign a classification. A unit may be as short as a single word or as long as a lengthy sentence. Compound sentences are usually divided at the conjunction, and sentence clauses are scored as separate units when they convey a single item of thought or behavior, such as an acknowledgement, evaluation, or greeting. Inasmuch as Bales’ system was originally devised to study group interaction, many researchers who derived theoretical direction from the system extensively changed the substantive categories to more directly reflect dyadic medical interaction. Nevertheless, the first studies of medical dialogue using Bales’ process analysis system, which were done in the late 1960s and 1970s, are still cited as the seminal studies on physician-patient communication (Davis, 1969, 1971; Freemon, Negrete, Davis, & Korsch, 1971; Korsch, Gozzi, & Francis, l968). Additional studies done in the 1980s on adult visits (Stewart, 1984) and pediatric visits (Starfield et al., 1981) were also closely modeled on Bale’s system. The Verbal Response Mode (VRM). The Verbal Response Mode (VRM), an alternative theoretical approach based on linguistic theory, was introduced by William Stiles (1992). Like Bales’ system, the VRM is a general-purpose system for coding speech acts and has uses beyond analyzing medical encounters. The unit of analysis is a speech segment, defined grammatically as equivalent to one psychological unit of experience— that is, a single utterance. The operational definition of an utterance is similar to that used by Bales. In particular, an utterance can be a simple sentence, an independent clause, a nonrestrictive dependent clause, an element of a compound predicate, or a term of acknowledgement, evaluation, or address. The system forms a taxonomy that implies a particular interpersonal intent or microrelationship between communicator and recipient. There are three principles of classification: the source of experience, operationalized as attentiveness (to the other speaker) or informativeness (the speaker’s own experience); presumption about experience,

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operationalized as directive (controlling dialogue) or acquiescent (deferring to the other’s viewpoint); and, finally, the frame of reference, defined as presumptuous (presuming knowledge about the other person) or unassuming (not presuming particular knowledge). Each of these classification principles is dichotomous, taking the value of “the speaker” or “the other.” The taxonomy assigns language segments to the categories—disclosure, edification, advisement, confirmation, question, acknowledgement, interpretation, and reflection—in the following ways. Source of experience refers to a speaker’s attentiveness to the other person, including utterances that relate to the other person’s experience (i.e., questions, acknowledgments, interpretations, and reflections). Informative utterances reflect the speaker’s own experience through disclosures of thoughts, feelings, wishes, perceptions, or intentions concerning the speaker’s experience (i.e., disclosures, edifications, advisements, and confirmations). Directiveness refers to the speaker’s control of the dialogue, including utterances that use the speaker’s frame of reference or viewpoint (i.e., disclosures, questions, advisements, and interpretations). Acquiescent utterances (i.e., edifications, acknowledgments, confirmations, and reflections) allow the other’s viewpoint to determine the course of the conversation. In presumptuous utterances (i.e., advisements, interpretations, confirmations, and reflections), a speaker expressly presumes knowledge about the other person. For example, when one utters a reflection, one presumes to understand the other’s experience. Similarly, when one utters an advisement (guiding another person’s behavior), one presumes to know what the other should do. Unassuming utterances (i.e., disclosures, questions, edifications, and acknowledgments) make no such presumption. Using this taxonomy, each speech segment is coded twice, once with respect to its grammatical form (or literal meaning) and once with respect to its communicative intent (or pragmatic meaning). Thus, there are 64 possible form-intent combinations, 8 pure modes, in which form and intent coincide, and 56 mixed modes, in which they differ. The reliability of VRM coding appears to be adequate. Stiles reported 81% agreement for form and 66% for intent (based on Cohen’s Kappa) in a study of parent-child interaction (Stiles & White, 1981), and Meeuwesen, Schaap, and van der Staak (1991), in their study of primary care visits, reported an average of 78% agreement over categories. The VRM has been used by its author and several others in studies in the United States, the United Kingdom, and the Netherlands. These include studies on primary care (Inui, Carter, Kukull, & Haigh, 1982; Stiles, Putnam, & Jacob, 1982) and studies of patients with particular types of problems, including hypertensive patients (Orth, Stiles, Scherwitz, Hennrickus, & Vallbona, 1987), expectant mothers (Brownbridge, Lilford, & Tindale-Biscoe, 1988), breast cancer patients (Burton, Parker, & Wollner, 1991), patients with physical complaints possessing psychological components (Meeuwesen et al., 1991), and the institutionalized aged (Caporael, 1981). See Stiles (1992) for a more exhaustive review of VRM studies. The Roter Interaction Analysis System (RIAS). The RIAS is derived loosely from social exchange theories related to interpersonal influence, problem solving (Bales, 1950; Emerson, l976), and reciprocity (Ben-Sira, 1980; Davis, 1969; Gouldner, l960; Roter & Hall, 1989). It provides a tool for viewing the dynamics and consequences of patients’ and providers’ exchange of resources through the interaction of the medical dialogue. The social exchange orientation is consistent with health education and empowerment perspectives that view the medical encounter as a “meeting between experts” and is grounded in an egalitarian model of patient-provider partnership that rejects expert domination and passive patient roles (Freire, 1983; Roter, 1987, 2000a, 2000b;

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Roter & Hall, 1992; Tuckett, Boulton, Olson, & Williams, 1985; Wallerstein & Bernstein, 1988). A good way to organize and ground RIAS-coded communication in the clinical encounter is to use a functional model of medical interviewing (Cohen-Cole, 1991). In this model, task behaviors fall within two of the medical interview functions: “gathering data” to understand patient problems and “educating and counseling” patients about their illness and motivating them to adhere to treatment. Affective behaviors generally reflect a third medical interview function, “building a relationship” through developing rapport and being responsiveness to the patient’s emotions. A fourth function of the visit, “partnership building” involves enhancing patients’ capacity to engage in an effective partnership with their physicians. Although not explicitly defined by the authors of the functional model, the use of verbal strategies to help patients integrate and translate between the biomedical and psychosocial paradigms of the therapeutic dialogue deserves special note. The “activating” function facilitates the expression of patients’ expectations, preferences, and perspectives so that they may more meaningfully participate in treatment and management decision-making (Roter, 2000a). The RIAS is applied to the smallest unit of expression to which a meaningful code can be assigned, generally a complete thought. These units are assigned to mutually exclusive and exhaustive categories that reflect the content and form of the medical dialogue. Form distinguishes utterances that are primarily informative (information-giving statements), persuasive (counseling statements), interrogative (closed and open-ended questions), affective (social, positive, negative, and emotional utterances), and process oriented (partnership-building utterances, orientations, and transitions). Content areas are specified for exchanges about medical condition and history, therapeutic regimen, lifestyle behaviors, and psychosocial topics relating to social relations and feelings and emotions. In addition to assigning utterances to the verbal categories of exchange, coders rate each speaker on a 6-point scale reflecting a range of affective dimensions, including anger, anxiety, dominance, interest, and friendliness. The ratings have been found to reflect voice tone channels that are largely independent of literal verbal content (Hall, Roter, & Rand, 1981). The system is flexible and can be tailored to the study context by adding or elaborating categories. The variables that can be calculated include total amount of talk (by participant), the ratio of provider to patient talk (an indication of verbal dominance), and the ratio of biomedical to psychosocial talk (an indicator of topic focus). Patient-centeredness scores can be computed by calculating the ratio of patient to physician communication control: the sum of physician information giving (including biomedical and psychosocial information giving) and patient psychosocial information giving and question asking divided by the sum of physician question asking and patient biomedical information giving. Calculating such variables is similar to the approach taken in several studies (Wissow et al., 1998) and by other investigators (Greenfield, Kaplan, & Ware, 1985). Coders apply the RIAS directly to audiotapes without transcription, using direct entry software that can be applied to digitized audio or video files or used with analogue audioor videotape recordings. When additional coding tasks are added—for instance, noting the presence of targeted skills, adding selected verbatim excerpts of dialogue or word use, or marking the dialogue of additional participants—coding may take longer. The RIAS has demonstrated substantial reliability and predictive validity for a variety of patient outcomes. In the first author’s own studies, the reliability has ranged across categories, from roughly .7 to .9 based on Pearson correlation coefficients, with lower reliabilities reflecting infrequent categories (Roter, Hall, & Katz, 1987; Roter et al., 1997;

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Wissow et al., 1998). Other researchers have reported similar reliabilities (Inui et al., 1982; Bensing & Dronkers, 1992; Van Dulmen, Verhaak, & Bilo, 1997; Mead & Bower, 2000). The RIAS has been widely used in studies in the United States and Europe as well as Asia, Africa, and Latin America. It has been applied to a variety of medical settings and specialties (i.e., adult and pediatric primary care, emergency medicine, obstetrics and gynecology, oncology, surgery, nursing, podiatry, and dentistry) as both a descriptive and evaluative research tool and a teaching tool. See Roter and Larson (2001) for representative references to the RIAS. A System for Measuring Patient-Centeredness. This system, developed specifically to assess the patient-centeredness of patient and physician behaviors (McWhinney, 1989; Stewart et al., 1995), involves scoring audiotaped or videotaped medical encounters (Brown, Weston, & Stewart, 1989; Levenstein, McCracken, McWhinney, Stewart, & Brown, 1986; Stewart et al., 1995). The scoring procedure is described in detail elsewhere (Brown, Stewart, & Tessier, 1995: Henbest & Stewart, 1989; Stewart et al., 1995), but the scores range from 0 (not at all patient-centered) to 100 (very patientcentered) based on an assessment of three main components. The first component is “understanding of the patients’ disease and experience.” This understanding is indicated by the specification of statements related to six elements of the illness experience: symptoms, prompts, ideas, expectations, feelings, and impact on function. Every pertinent statement for each of the six elements made by the patient is recorded verbatim on the coding sheet. The coder assigns a score based on whether the physician provided preliminary exploration (yes or no), further exploration (yes or no), or cut off discussion (yes or no). The second component, “understanding the whole person,” identifies the extent to which the physician and patient explore the context of the patient’s life setting (e.g., family, work, social supports) and stages of personal development (e.g., life cycle). The third component, “finding common ground,” reflects the development of mutual understanding and agreement in three key areas: the nature of the problems and priorities, the goals of treatment and management, and the roles of the physician and patient. Interrater reliability reported by the system’s authors and their raters ranged between .69 and .83 (Brown, Stewart, McCracken, McWhinney, & Levenstein, 1986; Stewart et al., 1996). Mead and Bower (2000) reported an intraclass correlation coefficient of .58 for use of the system in their study. Other Code Systems. The four systems reviewed above are the most widely recognized. There are a variety of other communicative phenomena being studied using somewhat different coding systems. These systems have been used primarily by their creators, although their results are as relevant and reliable as the more established systems. Further, some of these coding systems are grounded in theoretical frameworks. Four representative examples of previously published and reliable coding schemes are briefly reviewed below. One group of researchers, dissatisfied with single-level coding systems that inadequately assessed complex communicative moves, developed the Multi-Dimensional Interactional Analysis System (MDIA). They have primarily applied the system to the study of physician–elderly patient interactions (Charon, Greene, & Adelman, 1994; Greene, Adelman, Friedmann, & Charon, 1994). The purpose of the system is to capture complex information and relational strategies enacted by participants. Six components are coded: content (and who initiates), topic responsiveness, relational messages, overall task performance by physician and patient, three major topics covered, and sentinel events.

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Greene et al. (1994) found older patient satisfaction was positively correlated with patient information-giving on patient-initiated topics, physician questions and supportiveness, length of visit, negatively phrased physician questions, shared laughter, and physician satisfaction. Three other systems are noted for their theoretical focus and creativity in charting new territory. Street and Millay (2001) have combined both qualitative and quantitative methods to develop a new system to assess patient participation in medical interviews. Other researchers have taken the well-established Relational Control Coding Scheme (RCCS) developed by Rogers and Farace (1975) and applied it to various medical settings and sites in order to uncover relational control patterns in provider-patient interactions (Cecil, 1998; von Frederichs-Fitzwater, & Giligun, 2001). Using a communicative competence framework, McNeilis (2001) developed the Coordination and Competence System (CACS) to assess patterns of competent and less competent physician-patient communication. Three components are coded, including content, utterance alignment (two levels), and function (McNeilis, 2001). A recent study using this coding scheme reported that independent ratings of medical students’ communication competence were related to the coding of their utterances in simulated patient interactions (Gillotti, Thompson, & McNeilis, in press). The study indicated the specific communicative behaviors that predicted judgments of competence. Comparison Studies

Two studies and one special journal issue compared coding systems in an attempt to draw some conclusions regarding their relative practical and predictive value or to validate one system by comparing with another. In the first of these studies, Bales’ original process analysis scheme, the RIAS, and the VRM were compared by Inui and associates (Inui et al., l982). The three interaction analysis systems were applied to 101 new-patient visits to a general medical clinic for which patient knowledge, satisfaction, recall of prescribed medications, and compliance had been determined. The investigators found that the explanatory power of the three systems differed. For instance, Bales’ system explained 19% of the variation between patients who took prescribed drugs correctly, compared with 28% for the RIAS and none for the VRM. Explanation of variation in knowledge was somewhat better for the RIAS than for Bales’ system and the VRM, and satisfaction also favored the RIAS and Bales’ systems. Specific findings were as follows: Physicians’ giving of directions and orientation to a patient was negatively related to knowledge, expressions of tension (verbal or nonverbal) were negatively related to satisfaction, and patient bids for clarification and physician anxiety (global ratings) were negatively related to compliance. In the second comparative study, the RIAS, a measure of patient-centeredness using the Henbest and Stewart coding approach (1989), and a global measure devised for use in the Euro-communication study were compared (Mead & Bower, 2000). The three instruments were each applied to the same sample of 55 videotaped general practice consultations. Correlations between the three measures were low, with correlations of similar magnitude between the Euro-communication rating scale and the RIAS ( Pearson correlation = .37; p < .01) and the Euro-communication rating scale and the Henbest and Stewart measure (Pearson correlation = .37; p < .01). The lowest correlation was between the RIAS and Henbest and Stewart measure (Pearson correlation = .21; p < 12). The Euro-communication rating scale was significantly correlated with five variables: physician age, perceived acquaintance with the patient, consultation length, proportion

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of patient-directed eye gaze in the consultation, and physician ratings of the importance of psychological factors. The RIAS was significantly correlated with all of these variables except physician age. In addition, the RIAS was correlated with the patient’s score on the General Health Questionnaire, a validated measure of emotional distress (Goldberg & Williams, 1988), patient age, and patient health status. The Henbest and Stewart (1989) measure was significantly associated with only one of the measures—patient-directed eye gaze. Recently, a special issue of Health Communication (Thompson, 2001) was devoted to reporting the results of new and previously published coding systems. Six different systems, including the RIAS, the patient-centered method, and the VRM, were applied to the same data set (10 general practitioner–patient interactions collected from an urban family practice clinic). The three other systems, included for their new or enduring theoretical contributions, were the CACS (McNeilis, 2001), a system for assessing patient participation (Street & Millay, 2001), and a relational control coding system (von Frederichs-Fitzwater & Giligun, 2001). Unfortunately, various problems with confidentiality and access prevented the authors from relating their coding results to outcome data. Despite this, there were dramatic similarities noted between the systems’ categories and between their goals, and there was also a conceptual linkage between the systems regarding patient participation in the medical interview (Rimal, 2001). In particular, Rimal noted that who controls the interview, as indicated by topic changes, amount of talk time, and expertise, is related to the capacity and willingness of patients to participate in the medical interview. Frankel (2001) also reviewed the results and reported that the goal of the special issue was not to highlight the superiority of one system over another. Instead, the value of such comparison studies lies in the sharing of results and expansion research objectives that can occur. Both Rimal and Frankel were quick to point out, however, that the standards for reporting results and identifying reliability and validity need vast improvement for this research tradition to continue to improve. Qualitative Inquiry into Health Communication

Increasingly over the past decade, studies using primarily qualitative methods for analyzing the physician-patient relationship have been published in medical, interdisciplinary, and communication journals. Unlike research using the coding systems described in the previous section, most qualitative health communication research does not rely on previous research or analytical schemes—its objectives are different. Qualitative communication research focuses on examining communicative practices and performances in a particular context. The assumption is that, through communicative acts, we enact the meaning of our relationships and experiences (Lindlof, 1995). Further, the objective of qualitative research is “to understand how people choose to express themselves” (Lindlof, 1995, p. 5). Because the goal is to understand people and their behavior, the researchers are less concerned with prediction and the control of variables. Instead, they attempt to preserve the form and content of human interaction and then to analyze its qualities. They want to describe and analyze practices and performances, not to statistically transform them for inferential purposes. An understanding of human relationships is developed by observing and recording communicative practices and performances. The research is typically guided by such questions as these: What is going on in this setting? What communicative actions are being performed here? How do the participants do these performances?

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Researchers who engage in qualitative inquiry have multiple ways in which to approach physician-patient interaction. Given the subjective nature of illness and health, the institutional nature of the setting, and the life-and-death importance of health care, qualitative inquiry can provide rich detail about communicative practices and performances and how they interact in the delivery of care. How do researchers gather data on communicative practices and performances? The data primarily include actual talk, gestures, social action, and recollections and interpretations of actions performed. Usually these data are collected through in-depth interviews (including focus groups), participant observations, recordings of naturally occurring talk, and diaries. The methods used in analyzing the data include but are not limited to metaphor and narrative analysis, discourse analysis, and conversation analysis. These methods are reviewed below, and notable studies that used the methods are identified. The review is not intended to be exhaustive but rather to point to representative examples of qualitative research in health communication. Discourse Analysis. For the most part, discourse analysis focuses on how talk within medical or other settings functions to change, establish, or maintain social or power relationships. Researchers who use discourse analysis (and conversation analysis) are interested in investigating actual speaking practices in medical interactions, and for this purpose they create verbatim transcripts of audio- or videotaped sessions. For example, Fisher and Todd’s (1983) now seminal book, The Social Organization of Doctor-Patient Communication, examined detailed transcripts of various medical interactions to uncover institutional practices that affect medical decision making. In one chapter, Cicourel described how physicians’ and patients’ beliefs conflict with one another. Cicourel examined actual medical talk and the accompanying patient medical records to identify underlying beliefs and sources of misunderstanding. Other examples of discourse-based research include, several studies that examined goals and identities within the context of women’s health care delivery (Beck, 1997; Beck & Ragan, 1992; Smith-Dupre & Beck, 1996). Specifically, Beck (1997) analyzed personal experiences and recorded interactions to discover how “communicative activities work reflexively to enable participants to display and respond to relational and individual identities and goals” (p. 6). Other studies examined misunderstandings between physicians and patients (Cicourel, 1983; Shuy, 1976; West, 1984a, 1984b), the interactional accomplishment of tasks such as information exchange and relational development (Frankel & Beckman, 1982; Shuy, 1983), the constraints imposed by the interview structure on the ability of patients to tell their stories (Mishler, 1984), the opportunities for empathy that exist in medical interviews (Suchman, Markakis, Beckman, & Frankel, 1997), the functioning of interview closings (White, Rosson, Christensen, Hart, & Levinson, 1997), and the medical gaze and autonomy in dialogue (Nessa & Malterud, 1998a, 1998b). Conversational Analysis. Closely related to discourse analysis is the use of conversation analytic techniques. Conversation analysis rests on the assumption that structural features of talk obligate participants to pursue certain courses of action. Talk is transcribed using Gail Jefferson’s transcription conventions (see Morris & Chenail, 1995). The resulting transcriptions provide a means for understanding the timing and placement of utterances in streams of dialogue (Sacks, Schegloff, & Jefferson, 1974). Some conversation analytic research is concerned with developing exemplars of and discovering rules for certain features of talk within medical interactions. Such research typically examines turn-taking rules, question-and-answer sequences, and conversational

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repair attempts, among other conversational phenomena. Talk of the Clinic (Morris & Chenail, 1995) presents many variants within this tradition. For instance, Frankel and Beach, in separate chapters, proposed that the traditional question-and-answer structure of the medical interview constrains participants’ choices for responding. Beach examined the use of “okays” in clinical interactions by identifying the diversity of its usage on a continuum from no difficulties in accomplishing tasks to increasing troubles needing remedy. Other studies have focused on the function of turn-taking and interruptions (West, 1984a, 1984b) and on the opening segments of medical interviews (Frankel and Beckman, 1982). Researchers have also looked at how politeness strategies are used to communicate social distance and influence decision making (Aronsson & Satterlund-Larsson, 1987) and how the presence and use of a computer in the medical exam imposes certain structural changes in physician and patient disclosure (Greatbatch, Heath, Campion, & Luff, 1995). The value of conversation analysis generally lies in its micro-analysis of naturally occurring medical talk (also true of discourse analysis). West and Frankel (1991) argued that conversation analytic techniques can help substantially in determining how certain communicative features of the medical interview can impact patient outcomes. Narrative Analysis. Narrative analysis, along with its various interpretive cousins, focuses on the recounted or observed stories of participants’ experiences. Waitzkin and Britt (1993) defined narrative in the medical context as “story telling that portrays the interrelationships among physical symptoms and the psychologic, social, or cultural context of these symptoms” (p. 1122). Generally, narrative analysis is intended to report on and give voice to individuals as they navigate the medical maze (Frank, 2000). Waitzkin and his colleagues have used narrative analysis in their studies based on the idea that one can expose social and institutional control, discourse features, and ideology that appear peripheral to medicine’s technical tasks (Borges & Waitzkin, 1995; Waitzkin & Britt, 1993). For instance, Waitzkin and Britt (1993) investigated self-destructive behaviors in medical interactions to uncover how various activities are marginalized or interrupted in the traditional medical interview. In doing so, they developed useful criteria for interpreting and analyzing narratives in medical encounters specifically. Mishler’s (1984) research is also representative of narrative analysis, for he used transcribed interactions to unearth two competing stories in the medical context, one involving “the voice of medicine” and the other “the voice of the lifeworld.” As a final example, narrative analysis encompasses using a grounded theory approach to analyze recorded or observed medical interactions. Also referred to as narrative account, the goal is to observe oneself and other participants in order to fashion an account of how understandings emerged during the interaction (Hirschmann, 1999). Studies utilizing this technique have examined how interns learn and unlearn communication skills (Hirschmann, 1999) and identified emergent relational themes in physician-patient dialogue (Walker, Miller-Day, & Arnold, in press). LIMITATIONS OF RESEARCH METHODS

There are a number of fundamental issues with which the field must contend for progress to continue, including the lack of guiding theoretical models, the limitations of current methods, the application of research methods and results to physician training and assessment, and the changing nature of the therapeutic relationship. Primary among these issues is the lack of theoretical models to guide investigators. (See Hall, Roter, & Katz, 1988; Roter, 2000a; Roter & Hall, 1992; and Thompson, 1994,

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1998, for discussions of current models.) This theoretical deficit has contributed to the largely exploratory nature of physician-patient communication studies and the general absence of conceptual framing of results. In response, meta-analytic methods could be applied to uncover common underlying dimensions of this body of research. Many of the coding systems are complementary and could be combined in creative and powerful ways. Furthermore, measurement approaches must be subject to both construct and predictive tests of validity. We would encourage scholars to continue to explore the common denominators among the systems reviewed here and those recently published. In other words, researchers need to be conducting further analysis to identify commonalities and thereby promote creative syntheses as well as the replication of studies and the validation of their findings. Second, methodological limitations are evident in all of the individual systems of interaction analysis. In particular, there has yet to be developed a practical approach to accounting for interaction sequences in our coding systems. A basic assumption has been that summary profiles based on the frequencies of verbal behaviors engaged in during an encounter adequately reflect the communication process. However, as pointed out by Inui and Carter (l985), this is analogous to describing Hamlet as a play in which the principal characters include ghosts, witches, lords, ladies, officers, soldiers, sailors, messengers, and attendants, one of whom is already dead, one of whom dies by drowning, one by poisoned drink, two by poisoned sword, and one by sword and by drink! The schism between qualitative and quantitative methods continues to stymie progress on both fronts. It was not our intent to present a false dichotomy in reporting quantitative and qualitative studies separately. However, we found that most researchers self-identified their study as either quantitative or qualitative in nature. There is a paucity of research that combines qualitative and quantitative methods, and scholars in the field have frequently called for studies that combine methods of both types (Frankel, 2001; Rimal, 2001; Roter & Frankel, 1992; for an exception see Street & Millay, 2001). We need to develop new models of analysis that are integrative rather than parallel or competing. Frankel (2001), in a special issue of Health Communication, advocated combining qualitative and quantitative methods, noting that previous research has demonstrated that a synthesis of techniques for studying physician-patient interaction has better predictive power. He goes on to say, however, that in order to develop new approaches, researchers need to develop standards or conventions for reporting results to minimize the current variation in reporting techniques. New computer technologies and software, but nontraditional thinking even more so, may be the key to these breakthroughs. Along these same lines, the design of research in the field has been quite narrow and almost entirely cross-sectional, with little attention to longitudinality or continuity of care. In the meta-analysis reported earlier, only 40% of the studies did not indicate whether the patient and physician were previously acquainted (Roter et al., 1988). It is very rare for a study to follow the same patient-physician dyad prospectively; we found only two small studies of this kind, one a qualitative analysis (Stewart et al., 1995) and the other using the RIAS system (Van Dulmen et al., 1997). Our current work is moving in this direction; we have analyzed the health maintenance visits of 192 new babies over a 1-year period (for a total of 700 visits) to 30 pediatricians. Surprisingly, we found that a long-standing relationship was not associated with more frequent discussion of psychosocial topics or with greater physician awareness of maternal distress (Wissow et al., 2000). Although we suspect that continuity of care benefits the therapeutic relationship, we really know very little about continuity’s black box. In fact, it may be that there are some negative aspects

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of continuity, such as the presumptuousness of familiarity, labeling, and the need for a fresh perspective. Better specification of the ongoing relationship can be accomplished through more conscientious reporting by investigators and through more creative research designs. Third, investigators have some responsibility to make their research methods and findings accessible to the clinical audience. More intervention studies are needed in which teaching methods are evaluated in light of actual changes in physicians’ communication style and, further, validated against changes in patient outcomes. Those physicians who act as trainers in clinical interviewing courses would benefit from this area of research and could be asked to collaborate with researchers in developing analysis schemes pertinent to quality-of-care assessments. Research on patient interventions is also important and relatively underdeveloped. Many studies that addressed patient interventions found favorable effects. This is clearly an area that needs further elaboration and has tremendous potential for health education trials. FUTURE DIRECTIONS

Health communication researchers need to pay attention to the communicative dynamics in medical relationships under stress. Most of what we know about patient-physician communication has been learned within the context of routine primary care. There is a growing and important body of studies of cancer patients that will help us better understand nonroutine care and the management of life-threatening illness episodes. Incorporation of psychotherapeutic techniques and theories into communication assessment and primary care training will help push forward the field and enable physicians to better deal with the psychosomatic and psychosocial distress experienced by so many primary care patients. In addition to the obvious adaptations of psychotherapy within the context of primary care, new approaches to defining the nature of the therapeutic alliance and the parameters for patient counseling need to be established. Relationships outside of primary care, including emergency room visits and the care provided by specialists, have been largely ignored. Insight into these areas is important not only because a large number of patients remain outside of the primary care system but also because a majority of patients straddle primary and specialty care. Communication researchers must confront emerging ethical and philosophic issues. These include issues that arise where uncertainty is present, such as end-of-life planning, enrollment in clinical trials, treatment of the cognitively impaired, and genetic testing. Insight is needed into the social context of the therapeutic relationship, and attention must be given to gender, socioeconomic status, and ethnicity, particularly the gender, socioeconomic status, and ethnicity of physicians. Of these social context variables, gender has received the most attention within communication studies, although the number of studies is still quite small, probably less than 20 (Roter & Hall, 1992). Virtually unknown are the effects of physician social class, ethnicity, and culture on patients of the same or a different background. Knowledge of the basic social psychology of the therapeutic relationship continues to mature but still shows vulnerable gaps. We cannot yet consistently increase patient understanding and recall, improve participatory decision-making, or optimize adherence and commitment to therapeutic regimens. These are continuing and critical challenges for communication researchers. We must embrace the use of new interactive computer technologies at all levels of our work. Interactive CD-ROMs, web-based programming, and interactive videos are part of the new frontier.

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Finally, the basic characteristics of the provider-patient relationship may be undergoing substantial evolutionary changes (Inui & Carter, l985). There is considerable evidence that patients are becoming more consumerist in orientation, and members of the new generation of patients are likely to directly challenge physician authority during medical encounters (Haug & Lavin, l983). There is also evidence that physicians may be accommodating their patients by agreeing to a more egalitarian relationship and tolerating patient participation in decision making. The implication of these changes is tremendous, and they must be given full and serious consideration in conceptualizing how the patient-physician relationship may be articulated in the medical encounter. Important strides have been made in understanding doctor-patient relations, but challenges remain. The most significant of these challenges is to push forward our conceptual and methodological imagination to approach the field in new and meaningful ways. REFERENCES Aronsson, K., & Satterlund-Larsson, U. (1987). Politeness strategies and doctor-patient communication on the social choreography of collaborative thinking. Journal of Language and Social Psychology, 6, 1–27. Bales, R. F. (1950). Interaction process analysis. Cambridge, MA: Addison-Wesley. Beach, W. A. (1995). Preserving and constraining options: “Okays” and “official” priorities in medical interviews. In G. H. Morris & R. J. Chenail (Eds.), The talk of the clinic: Explorations in the analysis of medical and therapeutic discourse (pp. 259–290). Hillsdale, NJ: Lawrence Erlbaum Associates. Beck, C. S. (1997). Partnership for health: Building relationships between women and health care givers. Mahwah, NJ: Lawrence Erlbaum Associates. Beck, C., & Ragan, S. (1992). Negotiating interpersonal and medical talk: Frame shifts in the gynaecologic exam. Journal of Language and Social Psychology, 11, 47–61. Bensing, J. M., & Dronkers, J. (1992). Instrumental and affective aspects of physician behavior. Medical Care, 30, 283–298. Ben-Sira, Z. (1980). Affective and instrumental components in the physician-patient relationship: An additional dimension of interaction theory. Journal of Health and Social Behavior, 28, 170–181. Boon H., & Stewart M. (1998). Patient-physician communication assessment instruments: 1986 to 1996 in review. Patient Education and Counseling, 35, 161–176. Borges, S., & Waitzkin, H. (1995). Women’s narratives in primary care medical encounters. Women’s Health, 23, 29–56. Brown, J. B., Stewart, M. A., McCracken, E. C., McWhinney, I. R., & Levenstein, J. H. (1986). The patient-centered clinical method: 2. Definition and application. Family Practice, 3, 75–79. Brown, J. B., Stewart, M., & Tessier, S. (1995). Assessing communication between patients and doctors: A manual for scoring patient-centered communication (Working Paper Series No. 95). London, Ontario: University of Western Ontario, Centre for Studies in Family Medicine. Brown, J. B., Weston, W. W., & Stewart, M. A. (1989). Patient-centered interviewing: 2. Finding common ground. Canadian Family Physician, 35, 153–157. Brownbridge, G., Lilford, R. J., & Tindale-Biscoe, S. (1988). Use of a computer to take booking histories SP in a hosptial antenatal clinic. Medical Care, 26, 474–487. Burton, M. V., Parker, R. W., & Wollner, J. M. (1991). The psychotherapeutic value of a “chat”: A verbal response modes study of a placebo attention control with breast cancer patients. Psychotherapy Research, 1, 39–61.

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7 Outcomes of Patient-Provider Interaction Judith Belle Brown, Moira Stewart, and Bridget L. Ryan The University of Western Ontario

Over 30 years ago, Barbara Korsch’s (Korsch, Gozzi, & Francis, 1968) seminal work on patient satisfaction within the domain of the patient-provider encounter set the agenda for research on the interaction between patient-provider communication and patient outcomes. A plethora of studies have since provided substantial evidence on the interaction. These studies have moved beyond issues of patient satisfaction to include evidence on patient physiological outcomes (Greenfield, Kaplan, & Ware, 1985; Kaplan, Greenfield, & Ware, 1989), improvements in patient adherence (Garrity, 1981; Golin, DiMatteo, & Gelberg, 1996), and the impact of poor communication on provider malpractice complaints (Beckman, Markakis, Suchman, & Frankel, 1994; Lester & Smith, 1993). Relevant research findings include serendipitous results from studies not exclusively designed to explore the patient-provider interaction, as described later in this chapter (Headache Study Group, 1986). This chapter examines the relationship between patient-provider interaction and patient and provider outcomes. Patient outcomes include satisfaction, adherence to treatment, and patient health outcomes ranging from self-reporting (e.g., reporting reductions in concern about symptoms) to measures of physiologic status. Provider outcomes include malpractice complaints and the length of the consultation. The findings presented in this chapter were garnered from both qualitative and quantitative studies. A consistent message from studies using different methods enhances credibility, and the importance of multimethod approaches is discussed in the section on developing a research agenda for the 21st century. Research findings lack relevance if they are not directly applicable to the clinical setting. Findings must be timely, accessible, and make intuitive sense to the practitioner. A central challenge for researchers is discovering how study findings can best be disseminated

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and ultimately improve patient and provider outcomes. The final section of this chapter discusses the implications of the research findings for clinical practice. Although this chapter examines specific outcomes connected to patient-provider interaction, what will quickly become apparent to the reader are the multiple and equally dynamic interfaces among the various outcomes. For example, patient satisfaction intersects with health outcomes, and the perennial concern about consultation length is interwoven with both patient satisfaction and health outcomes. Furthermore, the introduction of managed care adds a whole new dimension to the research on patient-provider interaction. Thus, research on patient-provider interaction and outcomes is influenced by many contexts, including the patients, the providers, and the specific environments in which the interaction transpires. Nonetheless, due to time and fiscal restraints, investigators have been required to focus their research narrowly. As a result, they have concentrated on specific aspects of a single patient-provider interaction, neglecting the evolution of interactions over time. This limitation poses challenges for future research as we continue to explore the synergistic interchange between patients and their providers. PATIENT OUTCOMES Satisfaction

Historically, patient satisfaction has been an important outcome. In a review of satisfaction research, Di Palo (1997) noted that patient satisfaction studies date back almost half a century. Much of the early research into patient satisfaction was part of a broad effort to investigate people’s satisfaction with different areas of their lives. In the 1960s and 1970s, medical sociology grew into a separate subfield, and so too did research into patient satisfaction. Unlike other sociological research, sociodemographic variables could not account for much of the variation in patient satisfaction (Fox & Storms, 1981; Pascoe, 1983; Ware, Davies-Avery, & Stewart, 1978). The most consistent relationships were found between patient satisfaction and age and sex, with increased satisfaction being associated with being older and female. Even in the cases of age and sex, the relationship with satisfaction depended on which aspect of medical care was being measured and the amount of variation accounted for was small (Pascoe, 1983). As noted previously, Korsch in the late sixties reported that there were a number of communication barriers between pediatricians and mothers that contributed significantly to dissatisfaction. These included lack of warmth and friendliness on the part of the physician, failure to take into account the parent’s concerns about and expectations for the medical visit, lack of clear-cut explanations of the diagnosis and the causation of illness, and the use of medical jargon (Korsch et al., 1968). Discovery of these causes of dissatisfaction led to greater interest in the patient-provider interaction and its effect on satisfaction. During the 1980s, studies on patient satisfaction increasingly treated patient satisfaction as multidimensional and included the patient’s assessment of the physician’s technical competence as well as the quality of the patient-physician interaction. Hall and Dornan (1988) conducted a meta-analysis of 107 studies on patient satisfaction and uncovered 12 dimensions of patient satisfaction. These included overall satisfaction; aspects relating to the provider, such as humanness and competence; and aspects relating to the system, such as cost, physical facilities, and waiting time. The investigators found that patients ranked aspects related to the provider, such as humanness, technical quality, and overall quality of medical care, as the most important. Aspects related to the system and not the provider were ranked as least important.

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A 1997 collaborative study (Roter et al.), representing 13 sites in North America also described interaction patterns in primary care that were associated with patient satisfaction. The researchers found that the pattern associated with the highest level of satisfaction included communication that was balanced between the psychosocial and the biomedical; the pattern associated with the next level of satisfaction was labeled a consumerist pattern (the patients ask questions and physicians provide a large amount of information). This study emphasized that a communication approach that incorporates both psychosocial and biomedical topics is preferred by patients. In addition, research by S. J. Williams and Calnan (1991) identified intangible aspects of the patient-provider relationship as more important to patient satisfaction than issues such as access and availability, providing further evidence that communication is an essential component of the patient-provider interaction (M. Stewart et al., 1995). Specifically, for older patients, the provider’s interpersonal, affective style may have a larger influence on satisfaction than the actual subjects discussed during a visit (Greene, Adelman, Friedman, & Charon, 1994). Great value is placed on “caring” rather than “curing” (Linn et al., 1982). Thus, having a practitioner who understands their condition and whom they can turn to and rely on is very important. In Greene, Adelman, et al.’s 1994 study focusing on older patients, physician support and question asking in response to patient-raised topics was found to be positively correlated with patient satisfaction. The study also identified a trend indicating a negative correlation between patient question asking on patient-raised topics and satisfaction. The researchers hypothesized that older patients have been socialized to respect and not challenge the provider’s medical expertise and therefore have the expectation that the physician should be asking the questions. The patient is more comfortable answering questions than asking them and therefore less satisfied when having to do so during a medical encounter. The importance of continuity of care to patient satisfaction was highlighted in a review by Dietrich and Marton (1982). They concluded that continuity of care increased satisfaction for both patients and staff. This finding was consistent across various populations. Further, continuity of care can positively influence the attitudes of patients about the quality of care that they receive. Wasson et al. (1984) found that patients who experienced discontinuous care were less satisfied with their medical care and believed that their providers were not as knowledgeable or thorough. In another study, Weiss and Blustein (1996) found that long-standing patient-provider ties fostered less expensive, less intensive medical care. However, continuity can be disrupted when patients are dissatisfied. Researchers have examined patients’ decision to switch to different providers as a method of demonstrating dissatisfaction. A number of studies showed a relationship between dissatisfaction and the intention to switch services (Pascoe, 1983). In a study of older Americans, Weiss and Blustein (1996) found that dissatisfaction served as an incentive for change in provider for a small but significant portion (19.6%) of the subset of 251 respondents who had been seeing their care provider for one year or less. The most common reasons for dissatisfaction with a provider were “attitude or personality” (28.7%) and ineffectiveness of treatment (24.3%). The provider’s awareness of the patient’s expectations during a consultation is vital to achieve effective communication (S. Williams, Weinman, Dale, & Newman, 1995). Therefore, when the quality of communication with the provider is rated highly, patients are more likely to be satisfied with their medical care (Bertakis, as cited in Williams et al., 1995). The expectations of the practitioner are also related to patient satisfaction. For example, physician expectations as to whether an older patient would improve in the next

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2 months were found to be a significant predictor of patient satisfaction. Those patients whom the physician expected to get better were more satisfied with their care (Linn, Linn, & Stein, 1982). In summary, research has demonstrated that the key elements of patient-provider communication influencing satisfaction include a caring and understanding manner on the part of the health care provider, medical competence, a balanced inquiry into psychosocial and biomedical concerns, continuity of the patient-provider relationship, and the expression of patient and provider expectations. These findings have implications for both training and clinical practice, and these implications are elaborated on in the final section. Adherence

Recommendations for treatment and/or management make up a prominent component of the patient-provider interaction. As a result, patient-provider communication and patient adherence to treatment regimens are inextricably linked. Patient-provider communication has been identified as the most important factor in determining patient adherence to treatment in a number of studies with different populations (Garrity, 1981; Kjellgren, Ahlner, & Saljo, 1995; Ley, 1982; McLane, Zyzanski, & Flocke, 1995; Svarstad, 1985). As Salzman (1995) noted, successful communication is essential to patient adherence if clinicians are going to “help and encourage patients to participate fully in an agreed upon regimen in an informed and intelligent manner” (p. 21). Numerous articles (Blackwell, 1996; Garrity, 1981; Golin et al., 1996; Kjellgren et al., 1995; Ley, 1982, 1985; Roter, 1989; Sanson-Fisher, Campbell, Redman, & Hennrikus, 1989; Sbarbaro, 1990; Squier, 1990; Svarstad, 1985; B. M. Wilson, 1995) have summarized the multiple dimensions of the patient-provider interaction that are linked with patient adherence to treatment regimens. From this literature, four inter-related issues are evident: information exchange or patient education; finding common ground concerning expectations; the patient’s active role in the interaction; and the necessity of the practitioner’s positive affect, empathy and encouragement. Each of these issues is discussed below, with particular attention to the challenges of adherence for older patients. As for the first issue, patient education significantly influences whether a patient adheres to a treatment regimen. A key factor closely linked to adherence is the clinician’s role as an educator who must ensure that the patient understands and remembers the treatment regimen (Garrity, 1981; Kjellgren et al., 1995; Ley, 1982; Svarstad, 1985). Clear, concise, and explicit physician instructions have been associated with higher patient adherence (Garrity, 1981). Replete in the literature are communication guides or techniques to increase adherence, such as providing simple directions, repeating instructions, explicitly categorizing the information given, providing instructions in a clear and simple manner, providing concrete and specific directions, checking for understanding, and using different communication strategies (e.g., diagrams, videos, written information) (Kjellgren et al., 1995; Ley, 1985; Sanson-Fisher et al., 1989; Svarstad, 1985). In addition, information transfer can be improved by providing training or coaching to patients or providers (Ley, 1982). Although education is important for all patients, older patients face particular challenges, in part because of increased comorbidity. Adherence has been reported by health care providers as one of the more difficult problems they face when treating chronically ill, older patients (Coe, Prendergast, & Psathas, 1984). Thus, encouraging adherence to treatment is an important aspect of the older patient–provider interaction. As with other

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populations, research has identified communication as the most important factor in determining adherence in older patients (McLane et al., 1995). The number and dosing of medications have been found to be major stumbling blocks to adherence in the elderly (Anderson, Reed, & Kirk, 1982). Salzman (1995) found that adherence decreased among the elderly as the number of drugs prescribed and number of doses required per day increased. Lack of knowledge about a medication and its purpose has been associated with lower adherence (Salzman, 1995). Also, less time spent with elderly patients discussing these issues was one of the strongest predictors of lower adherence (McLane et al., 1995). Providers have been advised to assist medication adherence by taking the time to fully describe the medication and explain why it is being prescribed (Anderson et al., 1982; Garrity & Lawson, 1989; Salzman, 1995). The research clearly supports the importance of appropriate information exchange and education to improving patients’ adherence to treatment. However, information exchange and education alone are not sufficient to ensure patient adherence (Blackwell, 1996). The second major issue reported in the literature on patient-provider interaction and patient adherence is the goal of establishing mutual expectations for treatment. Discordance between patient and provider expectations may decrease adherence (Blackwell, 1996; Garrity, 1981; Golin et al., 1996). Thus, it is imperative that the patient and provider find common ground concerning treatment goals and regimens (Sanson-Fisher et al., 1989). Finding common ground increases the patient’s responsibility for the treatment decision and therefore increases the likelihood of adherence to the treatment regimen (Blackwell, 1996; Garrity, 1981; Golin et al., 1996). The third major issue is the patient’s role in the treatment decision. Accepting some responsibility for the treatment was found to be a condition necessary for maximal adherence (Garrity, 1981; Golin et al., 1996; B. M. Wilson, 1995). For the most part, patients who assume an active role in their care ask more questions and participate in making decisions about the treatment protocol (Garrity, 1981). Although active patients appear to demonstrate greater adherence, research has shown that not all patients desire the same level of involvement in their care. For example, a patient may be very active in obtaining information about treatment options but may still want the practitioner to decide on the final treatment protocol (Golin et al., 1996). It is important for the patient and the provider to determine together what the patient’s role will be. A study by Anderson et al. (1982) found that a discussion about shared responsibility and roles between the patient and the provider was associated with adherence in elderly patients. Although patients may vary in the amount of involvement they wish to have, the research suggests that some level of patient involvement is necessary for patient adherence. Therefore, physicians are encouraged to develop strategies, such as finding common ground and partnership building, that enhance the opportunities for patient involvement in interactions. A patient’s comfort level with participating in the interaction may depend on the fourth issue identified in the literature—the clinician’s ability to empathize with, understand, and encourage the patient. Positive affect appears to be associated with increased levels of patient adherence (Garrity, 1981; Kjellgren et al., 1995). Emotional support (Garrity, 1981), friendliness (Kjellgren et al., 1995), empathy (Squier, 1990), and partnership building (Roter, 1989; Sbarbaro, 1990) all appear to be important factors in improving patient’s adherence to treatment protocols. A study by Coe et al. (1984) stressed the importance of physicians’ understanding their elderly patients’ context for improving adherence. For example, if physicians understood their patients’ daily schedules, living arrangements, and possible cognitive or physical barriers to recall and adherence, they could adapt the timing of the medications and the

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manner in which the medication and dosage is explained. This strategy reflects a patientcentered approach to medical care, with a strong emphasis on finding common ground between patients and physicians (M. A. Stewart, 1995). It is noteworthy that many of the provider characteristics associated with better adherence have also been associated with patient satisfaction. A study of older patients found that the more satisfied the patient, the better the chance that the older patient would adhere to the treatment regimen (Greene, Majerovitz, Adelman, & Rizzo, 1994; Linn et al., 1982). Linn et al. (1982), upon finding that physician expectations were related to adherence, speculated that the physicians’ expectations of the older patient were conveyed (verbally or nonverbally) to the patient and that this affected both adherence and satisfaction. For example, if a physician had negative expectations, the patient was less satisfied with the visit, put little faith in the physician’s suggested treatment, and thus did not follow the treatment regimen. In summary, four central issues related to the patient-provider interaction have been identified as playing an important role in patient adherence to treatment protocols. First, the patient-provider relationship provides the context within which information regarding the treatment regimen is communicated. Many communication strategies have been shown to enhance this transfer of information. Second, the patient and the provider must work toward finding common ground concerning treatment expectations. Adherence with the treatment regimen is enhanced when the patient and provider determine a treatment that meets both their needs and expectations. Third, patients should be encouraged to play an active role in gathering information about treatment options and in the actual decision-making process. Finally, positive affect on the part of the provider, including empathy and encouragement, further enhances the patient’s adherence to treatment protocols. This requires discussing aspects of a treatment regimen, such as medication scheduling, within the context of the patient’s particular life situation. Health Outcomes

A literature review published on this topic in 1995 found 21 studies relevant to patientprovider interaction and patient health outcomes (M. A. Stewart). An update of this review using the same MEDLINE search strategy for the years 1993 to 1999 uncovered three new relevant articles (“A Controlled Trial,” 1995; Kinnersley, Stott, Peters, & Harvey, 1999; Selfe, Matthews, & Stones, 1998). The first article (“A Controlled Trial,” 1995), by the SUPPORT principal investigators, described an intervention to improve end-of-life care in five U.S. teaching hospitals. The intervention included increasing the information physicians were given about the condition of the patients and assigning a nurse the responsibility of eliciting preferences, improving the understanding of outcomes, encouraging attention to pain, and facilitating patientphysician communication. The intervention did not demonstrate a positive influence on a variety of outcomes, including the patients’ level of pain. The study by Selfe et al. (1998) examined the influence of the initial consultation on the patients’ recovery from chronic pelvic pain. The authors used a visual analogue scale to examine the physician’s understanding of the patient’s problem, the patient’s willingness to accept the physician’s explanation or advice, and the patient’s perception of the physician’s ease during the consultation. They found that the patients’ satisfaction with the initial consultation was associated with complete recovery at follow-up 6 months later.

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TABLE 7.1

Elements of Effective History-taking Element Provider Asks many questions about the patient’s understanding of the problem, concerns, and expectations and about his or her perception of the impact of the problem on function Asks the patient about his or her feelings Shows support and empathy Patient Expresses him- or herself fully, especially with regard to feelings, opinions, and information

Perceives that a full discussion of the problem has taken place Perceives that the physician has understood problem and was at ease during consultation

Patient Outcomes Affected Patient anxiety (Evans et al., 1987); symptom resolution (Heszen-Klemens & Lapinska, 1984) Psychologic distress (Roter et al., 1995) Psychologic distress (Roter et al., 1995); symptom resolution (Heszen-Klemens & Lapinska, 1984) Role limitation and physical limitation (Greenfield et al., 1985); health status, functional status, and blood pressure (Kaplan et al., 1989; Orth et al., 1987) Symptom resolution (Headache Study Group, 1986) Symptom resolution (Selfe et al., 1998)

The third study, by Kinnersley et al. (1999), explored whether, for patients presenting for new episodes of care, the physician’s consulting style, specifically the patient-centeredness of the consultation, was related to five outcomes. They found that the patient-centeredness of the consultation was related to patients’ satisfaction but not to patient-physician agreement, resolution of symptoms, resolution of concerns, or functional health status. These three studies, together with the other studies covered in the published review, can be summarized as follows. With regard to history taking, four randomized trials and six analytic studies were reviewed, of which eight obtained significant positive findings. Those aspects of history taking that were found to have a significant association with patient outcomes are summarized in Table 7.1. In general, the important aspects seem to be the physician’s asking questions about the patient’s illness experience and showing support as well as the patient’s fully expressing him- or herself. In the studies that examined discussion of the management plan, seven of the eight randomized, controlled trials and six of the eight analytic studies found significant correlations between communication interventions or variables and patient health outcomes. The aspects of communication relevant to discussion of the management plan that were found to significantly influence health outcomes are summarized in Table 7.2. These focus on information sharing, mutual decision-making, and patient-physician agreement. Five additional studies had findings relevant to other aspects of communication, such as a positive style (Thomas, 1978, 1987), a directive style (Savage & Armstrong, 1990), patient knowledge of instructions (Hulka, Kupper, Cassel, & Mayo, 1975), and meeting multifaceted in-patient support and information needs (“A Controlled Trial,” 1995). Of these, four studies showed no significant association between communication and patient health outcomes. Therefore, synthesizing Tables 7.1 and 7.2 leads to the conclusion that patient health outcomes are affected by (a) providers’ helping patients to fully describe their experience,

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Elements of Effective Discussion of the Management Plan Element Patient is encouraged to ask more

Patient is successful at obtaining information

Patient is provided with information programs and packages Provider gives clear information along with emotional support

Provider is willing to share decision making Physician and patient agree about the nature of the problem and the need for follow-up

Patient Outcomes Affected Anxiety (Thompson et al., 1990); role limitation and physical limitation (Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989) Functional status (Greenfield et al., 1985, Kaplan et al., 1989); physiologic status (Greenfield et al., 1988; Kaplan et al., 1989) Pain (Egbert et al., 1964); function (Johnson et al., 1988); mood and anxiety (Rainey, 1985) Psychologic distress, (Roter et al., 1995); symptom resolution (Heszen-Klemens & Lapinska, 1984); blood pressure (Orth et al., 1987) Patient anxiety (Fallowfield et al., 1990) Problem resolution (Starfield et al., 1981); symptom resolution (Bass et al., 1986)

(b) providers’ expressing empathy and support, (c) providers’ giving patients clear information, and (d) shared decision-making leading to agreement on the course of action. The reader will note a similarity between these key dimensions and those important for patient adherence. Five studies deserve special mention because of their design and unique findings. The Headache Study Group (1986) designed an analytic cohort study in family practice to answer the question, What variables predict recovery from headaches after a 1-year followup period? Characteristics of the patient; the interaction between the physician and the patient; and the symptoms, signs, and treatment were assessed during the first 6 weeks of the year. Recovery from headache was assessed at the end of the year. Those patients who recovered from the headaches at the end of the year were 3.4 times more likely to have perceived that their headache had been fully discussed at the initial visit than patients who had not recovered. This was the most important predicator of recovery from headache among the myriad clinical, treatment, and patient variables. Two studies of supportive care that affected “hard” health outcomes are also worthy of consideration. Spiegel, Bloom, Kraemer, and Gottheil (1989) conducted a randomized, controlled trial of supportive expressive group therapy for women with metastatic breast cancer. Fifty women were randomized to the group intervention, which lasted 1 year. After 4 years, all of the patients in the control group had died and a third of the treatment group were alive. Fawzy, Fawzy, and Hyun (1994) randomized 38 patients with newly diagnosed malignant melanoma to meet in groups for six sessions encompassing support and structured learning. Outcome measures, which were more positive in the intervention group than in the control group, included immune function, coping, anxiety, and depression. In addition, after 5 years, the survival rate in the study group was significantly higher than in the control group. Patients’ positive perceptions about patient-provider interaction have been found to influence not only patient outcomes but other health care outcomes as well. For example, Redelmeier, Molin, and Tibshirani (1995) conducted a randomized, controlled trial to examine compassionate care for the homeless. This care was provided by well-trained

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volunteers who listened attentively to and shared common experiences with patients who visited emergency departments. The researchers found that the homeless patients who were randomly assigned to receive compassionate care were significantly more satisfied and took significantly longer to return for another visit than patients receiving usual care. The researchers suggested that compassionate care may reinforce the reassurance being offered to the patient and promote faith in the system. With increased trust there may be a decrease in patients’ need for a second opinion, leading to a reduction in the use of overtaxed emergency rooms. In a recent study with an analytic cohort design, M. Stewart et al. (2000) sought to test the association between health outcomes and the patient-centeredness of an interaction. Patient-centeredness was measured by whether the physicians had elicited the patient’s experience of the illness as well as information about the disease, explored whole-person issues, and found common ground with the patient about the nature of the problem and the management plan. The study, which related patient-centered scores of audiotaped interactions (of family physicians and their patients) with health outcomes, revealed an important intermediary variable: the patient’s perception that the visit was patient-centered. This finding suggests that patient perceptions are an important step in the pathway connecting the patient-provider interaction to patient health and other health care outcomes, such as referral and diagnostic testing (M. Stewart et al., 2000). It also has important implications for managed care policies regarding patient-provider interaction. PROVIDER OUTCOMES Malpractice Claims

Patient dissatisfaction and poor communication between patients and health care providers may lead patients to file malpractice suits against their providers (Levinson, 1994). A number of studies have shown an association between poor communication and malpractice claims (Beckman et al., 1994; Hickson, Clayton, Githens, & Sloan, 1992; Hickson et al., 1994; Lester & Smith, 1993; Vincent, Young, & Phillips, 1994). The communication problems most frequently identified are inadequate explanation of diagnosis or treatment (Beckman et al., 1994; Hickson et al., 1992; Hickson et al., 1994; Vincent et al., 1994) and patients’ feeling ignored (Hickson et al., 1992; Hickson et al., 1994; Vincent et al., 1994). Other communication problems include physicians’ misleading patients (M. Stewart et al., 1995), physicians’ not understanding patient and family perspectives (Beckman et al., 1994), physicians’ devaluing patient and family views (Beckman et al., 1994), physicians’ desertion of patients (Beckman et al., 1994), and patients’ feeling rushed (Hickson et al., 1994). Using an experimental design, Lester and Smith (1993) demonstrated that negative physician communication behaviors—such as no eye contact; no smiling; no praise; no friendly physical contact; harsh, clipped, critical tones; minimal exchange of information; no acknowledgement of verbalizations; no reflection of affect; and a relatively short period of contact—could be risk factors for malpractice suits. Their findings suggest that positive communication behaviors—such as eye contact, friendly tone of voice, good exchange of information, smiling, appropriate physical contact (e.g., shaking hands), self-disclosure, acknowledgement of verbalizations, reflections of affect, appropriate praise, and a relatively long period of contact—decrease the likelihood of malpractice suits. Other studies have also indicated that good communication between patients and providers helps prevent malpractice claims (Penchansky & Macnee, 1994; Shapiro et al., 1989).

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In contrast to the studies cited above, the study by Levinson, Roter, Mullooly, Dull, and Frankel (1997) was unique in two ways: the researchers investigated the relationship between poor communication and malpractice claims through direct observation and identified specific communication behaviors that could potentially reduce the risk of litigation and they compared communication behaviors related to malpractice claims within different physician specialties. The authors identified communication behaviors that were characteristic of “claim” and “no-claim” primary care physicians. No-claim primary care physicians had longer visits and displayed more humor and laughter. They also provided more statements to help orient the patients to their actions or plan (e.g., “First I will examine you, then you will have tests”). Finally, the physicians used more facilitating comments, elicited patients’ opinions, clarified patients’ understanding, and addressed patient prompts. Interestingly, the study did not find communicative behaviors that distinguished between claims and no-claims surgeons. The authors suggested that patients’ expectations may be different when they visit surgeons or that other factors such as negligence and surgical complications may be more important than the communication variables measured. However, it may also be that communication between patients and their surgeons is more important when the surgeons must break bad news or inform patients of poor surgical outcomes. Based on the studies cited, it appears that a breakdown in communication often triggers a complaint about clinical care that could lead to a malpractice claim. This finding has implications for both future research and clinical practice. Time

The majority of research on how time impacts the patient-provider interaction has been conducted in the primary care setting, and although the length of consultation varies from country to country, the debate on how much time is enough remains persistent in the medical community (A. Wilson, 1991). The hypothesis that the “ability to communicate effectively may be largely a function of the time available for the consultation” (Roland, Bartholomew, Courtenay, Morris, & Morrell, 1986, p. 874) is at the center of the controversy, and there exist studies that support each side. After reviewing the relevant findings, this section concludes with a discussion of the methodological challenges in studying the relationship between patient-provider interaction and time. The following studies provide evidence to support the belief that optimal patientprovider interactions do not result in longer office visits. Marvel, Doherty, and Weiner’s (1998) study compared the interviews of exemplary family physicians (physicians who had received postgraduate training in family therapy) and those of community family physicians (physicians who had no additional training). The researchers found no difference in the length of the office visits between the two physician groups, but the exemplary physicians engaged the patients in more in-depth interactions, including exploration of psychosocial issues and collaboration with patients. Arborelius and Bremberg (1992) found that positive consultations (i.e., consultations that left physician and patient with a positive impression) took less time than negative consultations (those that left both parties with a negative impression). Furthermore, in the positive consultations, more time was devoted to exploring patient ideas and concerns. This finding is consistent with the results of Marvel et al.’s (1998) study. Greenfield, Kaplan, Ware, Yano, and Frank (1988) observed that, although the total volume of conversation

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between experimental group patients and their physicians was greater than for the control group, there was no corresponding change in the length of the visit. The intervention (to improve the information-seeking skills of the patient) produced a more active interchange but not a longer visit. Again, this is in concert with Marvel et al.’s (1998) findings on enhanced patient collaboration. Henbest and Fehrsen (1992) found that the most patientcentered consultations did not take longer than those that were less patient-centered. They stated that the “frequent assumption that it takes longer to conduct a patient-centered consultation was not supported. Lack of time cannot be legitimately offered as an excuse for not conducting patient-centered consultations” (p. 316). In contrast, other studies suggest that optimal patient-provider interaction requires longer consultations (Ferris, 1998; Hornberger, Thorn, & MaCurdy, 1997; Howie, Porter, Heaney, & Hopton, 1991; Hull & Hull, 1984; Jacobson, Wilkinson, & Owen, 1994; Marvel, 1993; Ridsdale, Morgan, & Morris, 1992; Verby, Holden, & Davis, 1979; Westcott, 1977). Ferris (1998) found that longer visits were associated with the provision of counselling and preventive services such as vaccination. Hornberger et al. (1997) concluded that it is not possible to meet the expectations of the provider, the patient, and the many and varied professional organizations generating clinical practice guidelines without increasing the length of the consultations. Howie et al. (1991) found that, for 17 of 33 questions asked, significantly higher proportions of patients gave responses that favored long consultations. The question “Did the doctor give you a chance to say what was really on your mind?” was positively associated with length of visit. They concluded that “the advantages of longer consultations do not simply lie in more services being provided but in a larger proportion of the needs which have been recognized being followed up by the doctor” (p. 54). In a study examining the lengthening of booking intervals from 5 to 10 minutes, M. Williams and Neal (1998) found that patients reported greater satisfaction with the longer consultation and were better able to understand and cope with their illnesses. A discussion of the impact of consultation length on patient-provider interaction would not be complete without the inclusion of patient satisfaction. Some studies have found that a decline in patient satisfaction is associated with longer visits (Hornberger et al., 1997). In contrast, an association between length of visit, patient volume, and patient satisfaction was found by Zyzanski, Stange, Langa, and Flocke (1998). Lower patient satisfaction was more common among the patients of high-volume physicians, whose visits were 30% shorter than those of low-volume physicians. Patients of high-volume physicians reported less follow-up on patient problems, less attention to patient responses, and less adequate explanations provided. In addition, high-volume physicians had significantly fewer patients who were up to date on the recommended guidelines for screening, counselling, and immunization. Thus, the authors suggested that increases in efficiency may occur at the expense of patient satisfaction and adequate preventive care and have a negative impact on the patient-provider interaction. Using the same data set, Gross, Zyzanski, Borawski, Cebul, and Stange (1998) identified two interaction strategies that would improve patient satisfaction. First, providers need to allow a brief period of time to “chat” about topics of a nonmedical nature. This kind of discussion, they suggested, may help the patient connect with the provider. Secondly, physicians must allow sufficient time to provide patients with feedback on clinical findings. Also using the same rich data set, Stange et al. (1998) observed that the mean length of the patient-physician visit was 10 minutes. Patients reported high levels of satisfaction with their provider and perceived that their expectations had been met. Taken together, these findings suggest that a 10-minute encounter is long enough to satisfy patients and meet their expectations.

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Certain factors, including patient and physician characteristics, may increase or decrease the consultation length. First, some topics such as alcohol abuse (Arborelius & Thakker, 1995) and stress (Russell & Roter, 1993) may require more time due to their complex nature. Also, patient characteristics such as socioeconomic status (Bain, 1979), age (Hull & Hull, 1984; Pereles & Russell, 1996; Westcott, 1977) and need for an interpreter (Rivadenyra, Elderkin-Thompson, Silver, & Waitzkin, 2000) may necessitate longer visits. Physician factors that may result in shorter visits include lack of time available for consultations (Herman, 1997) and lack of adequate physician remuneration for longer consultations (Howie et al., 1991; Pereles & Russell, 1996; Wirtzer, 1993). In conclusion, the examination of consultation length faces several methodological challenges. Securing a representative sample may be difficult, as the clinicians likely to agree to participate in studies on consultation length may reflect a biased sample. The greatest challenge, however, may be finding an effective method of measuring consultation length. Patient and provider self-reports of consultation length may be inaccurate. Also, determining the mean length of patient visits by dividing the time a provider spends in the office or clinic by the number of patients seen lacks precision (A. Wilson, 1991). The provider may spend considerable time on charting or administrative activities. The most accurate way of determining the consultation length is to observe the actual encounter between the patient and provider (A. Wilson, 1991), either directly (e.g., sitting in on the interview or viewing it through a one-way mirror) or by audio- or videotaping the encounter (which is less intrusive and more amenable to subsequent analysis). However, observation, no matter what the method, tends to be labor intensive and expensive. Another important issue is the context of the encounter. Context, in this sense, refers to outpatient versus inpatient care as well as the provider’s specific discipline. The clinical setting may dictate the amount of time available for the interaction. Some health care providers, such as family physicians, are in a position to build on the interaction over multiple encounters. This suggests that future research needs to examine series of consultations as well as individual encounters (Gray, 1998). The relationship between patient-provider interaction and consultation length remains a controversial issue. More detailed and rigorous studies, such as those by Gross et al. (1998), Zyzanski et al. (1998), and Stange et al. (1998), will serve to settle the question. A RESEARCH AGENDA FOR THE 21ST CENTURY

Research on the impact of patient-provider interaction on both patient and provider outcomes has an opportunity to make important contributions. We make four recommendations regarding future research on this topic. First, a variety of methods need to be employed to maximize research credibility. Qualitative and quantitative methods both build on and inform each other, as demonstrated later in this section. Second, more intervention studies are needed to determine the interconnections between patient-provider interaction and outcomes for both patients and providers. Third, researchers need to develop and refine assessment tools for exploring patient-provider interaction, increasing the rigor of this area of inquiry. Finally, research on patient-provider interaction and outcomes must take into account the confusion and tension surrounding managed care. Future research should also attempt to determine what outcomes are most relevant for patient health and well-being as well as patient care. In doing this, it will need to distinguish between outcomes favored by patients and those endorsed by providers. Of utmost importance will be the establishment of mutually agreed upon outcomes. Finding common ground on these outcomes will guide not only further research but clinical practice

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as well. When the most efficacious treatment is inconsistent with the needs of the patient, clinical wisdom may override research evidence. For example, if a physician and a patient with type 2 diabetes rigidly adhere to effective intervention guidelines in order to lower the patient’s HbA1 C, their interaction might be compromised as a side effect, putting their long-term relationship in jeopardy. In other words, a short-term gain might preclude success in the long run. This is where the interface between qualitative and quantitative methods is essential. The following examples demonstrate the research potential when both methods are brought together. By conducting in-depth interviews with patients regarding their providers’ communication style while providing information on smoking cessation, we may learn about the patients’ experience. Our new understanding can then be used to direct the development of instruments to ascertain patients’ satisfaction with health promotion strategies targeted at smoking cessation and also ascertain the patients’ ultimate success when these strategies are used. Alternatively, quantitative studies may identify a correlation between certain patient-provider characteristics that encourage adherence to a specific medication regimen. However, a qualitative approach (interviews or focus groups) may be necessary to isolate the specific activities or actions of the providers that enhanced the patients’ adherence. Recent qualitative studies (Britten, Stevenson, Barry, Barber, & Bradley, 2000; Salmon, Peters, & Stanley 1999) provide examples of how this research approach may shed light on difficult and complex issues and ultimately generate hypotheses for future exploration. For example, Britten et al.’s (2000) study on the misunderstanding between patients and physicians regarding the decision-making process used in the family practice setting highlights specific issues that could be explored via quantitative methods. One specific finding was that patients and physicians often disagree about the attribution of side effects. Future research could explore not only how frequently this occurs but what factors significantly ameliorate this problem. The study by Salmon et al. (1999) on patients’ perceptions of medical explanations of somatization disorders also illustrates how qualitative findings may provide insights of value for designing future quantitative studies of difficult patient problems. Their finding that patients with somatization disorders are both satisfied and empowered when their physicians’ explanations of the problems are perceived as tangible, exculpating, and involving could guide the development of an intervention study on communication and subsequent patient outcomes. Often studies are conducted retrospectively to investigate the impact of patient-provider communication on patient outcomes. Future research needs to employ a prospective approach, such as that used by Golin et al. (2000) to investigate the relationship between patient-physician communication and the desire for resuscitation. As suggested by this study, qualitative methods to examine the dynamics that alter patients’ communication and potential outcomes are also needed. McWilliam, Brown, and Stewart’s (2000) study on breast cancer is an example of how qualitative findings can provide important information and direction in the development of intervention studies designed to change provider styles of communication. In this study, breast cancer patients identified four dimensions as crucial to their communication with their physicians, particularly around the time of first diagnosis or a diagnosis of recurrence. First, they desired their physicians to spend time with them, exhibit a caring attitude, and engender hope. Second, they placed a high value on information sharing. As breast cancer patients, they felt an urgent need for accurate and detailed information to help them make decisions. However, they wanted to discuss the information with a trusted physician to assess its relevance and meaning for their lives. Third, they wanted to regain control over

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their lives. Here, as in previously described studies, it was important for the physicians to nurture the patients’ first attempts to care for themselves. Finally, they wanted to work together with their physicians, as well as with family and friends, to reknit their lives. These findings were used in the development of a randomized, controlled trial to examine an innovative continuing medical education program on communication with breast cancer patients (the goal of the program was to change provider behavior and hence patient outcomes). In conclusion, future research studies need to employ a variety of methods to optimize the investigation of patient-provider interaction and outcomes. With regard to the need to develop new measures of communication, Boon and Stewart (1998) published a comprehensive review of patient-physician communication assessment instruments cited in the literature from 1986 to 1996. Forty-four instruments were obtained and evaluated; 16 were designed for assessing and teaching patient-physician communication (medical education category) and 28 were designed for research purposes (research category). The instruments ranged from self-report measures to detailed and labor-intensive scoring procedures. The authors found that few instruments had been widely used. Many had never been demonstrated to be reliable or valid, making it difficult to compare the findings of different studies. They suggested that researchers should work collectively to evaluate data sets using different instruments in order to validate the measures. Also, very few instruments take into account nonverbal communication, despite research suggesting that the ability of providers to express emotions nonverbally and decode their patients’ nonverbal cues is associated with patient satisfaction and appointment keeping (DiMatteo, Hays, & Prince, 1986; DiMatteo, Taranta, Friedman, & Prince, 1980). Despite a plethora of available measures, there still appears to be no instrument that captures the dynamic interchange or the subtle nuances that characterize the patientprovider interaction. This remains a rich area for research. As managed care continues to dictate the payment arrangements for patient care, future research must include systematic inquiry into the outcomes of patient-provider interaction, including such issues as patients’ trust in their providers and the providers’ commitment to their patients’ well-being. (Mechanic & Schlesinger, 1996). Also, because managed care organizations place conflicting demands on providers (e.g., expecting them to see more patients while ensuring continued patient satisfaction), future research that combines qualitative and quantitative methods must be directed toward this issue. Based on the burgeoning research on the impact of managed care (see Chapter 15) and the impact of malpractice on patient outcomes, we surmise that these two issues will dominate future practice and drive future research. At present, the links between malpractice and managed care are only anecdotal (Sanders & McBride, 1998) and therefore require further study. However, researchers must proceed with caution. In our opinion, overemphasis on these topics may deflect research from well-founded areas of investigation and prevent them from examining all the important dimensions that impact patient-provider interaction and outcomes. IMPLICATIONS FOR CLINICAL PRACTICE

As indicated, various dimensions of patient-provider interaction impact patient satisfaction, adherence to treatment regimens, and health outcomes. Each of these dimensions has implications for daily practice. Furthermore, the findings of research into these dimensions can inform curriculum development at the undergraduate, postgraduate, and continuing education levels, allowing clinician skills and attributes to be backed by strong evidence.

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For example, the skills of listening and facilitation are not merely supported by “soft evidence” but rather by significant associations with patient satisfaction, patient adherence, patient recovery, and a decline in malpractice claims. Awareness of the importance of continuity and the need to explore both the disease and the illness experience during the encounter can assist the clinician in providing care that is responsive to the patient’s needs and expectations. These findings can drive curriculum, evaluation, and ultimately professional certification. Yet to be determined is the impact of managed care on the patient-provider interaction. In spite of the fact that patients view such physician characteristics as trustworthiness and competence to be important attributes related to outcomes, managed care may undermine these basic components of the patient-provider relationship. Slovenko (1999) noted that “under capitation plans, the less the physician does, the more he or she earns” (p. 12). This notion of ‘do less, earn more’ could translate into ‘communicate less, earn more’. The implications for clinical practice need to be monitored. Although much has been accomplished in terms of educating undergraduate medical students and residents at some faculties of medicine, other faculties have yet to revise their curricula. Continuing medical education is largely an unmapped frontier for the communication educators. The key future challenges for clinicians will be to incorporate desirable changes into practice while maintaining quality interactions with patients. Examples of recent developments include using computers in the examining room so that patients and providers can speedily access information and incorporating evidence-based guidelines or protocols into everyday practice. Both of these changes provide benefits but also carry potential risks, such as diminished interaction between patient and provider. Clinicians and researchers alike would be wise to monitor the impact of these and other new developments on the valued patient-provider interaction. CONCLUSION

This chapter has focused on the effect of patient-provider interaction on patient outcomes such as satisfaction, adherence, and health status as well as its effect on provider outcomes such as malpractice and availability of time. We contend that all of these areas of inquiry are relevant and worthy of study. However, we must ask to what end are we studying and improving patient-provider interaction? Is our goal to positively influence patient health as well as other important health care outcomes, including system-level outcomes? All of the patient-provider interaction issues have implications for practice, and new questions arising out of practice may stimulate innovative research ideas that we have not yet envisioned. Although research on patient-provider interaction has become even more challenging in this era of managed care, the need for increased knowledge demands that future studies be designed and carried out. REFERENCES Anderson, R. J., Reed, G., & Kirk, L. M. (1982). Compliance in elderly hypertensives. Clinical Therapeutics, 5 (Spec. No.), 13–24. Arborelius, E., & Bremberg, S. (1992). What can doctors do to achieve a successful consultation? Videotaped interviews analyzed by the “consultation map” method. Family Practice, 9, 61–66.

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Garrity, T. F. (1981). Medical compliance and the clinician-patient relationship: A review. Social Science and Medicine: Part E. Medical Psychology, 15, 215–222. Garrity, T. F., & Lawson, E. J. (1989). Patient-physician communication as a determinant of medication misuse in older, minority women. Journal of Drug Issues, 19, 245–259. Golin, C. E., DiMatteo, M. R., & Gelberg, L. (1996). The role of patient participation in the doctor visit: Implications for adherence to diabetes care. Diabetes Care, 19, 1153–1164. Golin, C. E., Wenger, N. S., Liu, H., Dawson, N. V., Teno, J. M., Desbiens, N. A., Lynn, J., Oye, R. K., & Phillips, R. S. (2000). A prospective study of patient-physician communication about resuscitation. Journal of the American Geriatrics Society, 48, S52–S60. Gray, D. P. (1998). Forty-seven minutes a year for the patient [Editorial]. British Journal of General Practice, 48,1816–1817. Greene, M. G., Adelman, R. D., Friedmann, E., & Charon, R. (1994). Older patient satisfaction with communication during an initial medical encounter. Social Science and Medicine, 38, 1279–1288. Greene, M. G., Majerovitz, D., Adelman, R. D., & Rizzo, C. (1994). The effects of the presence of a third person on the physician–older patient medical interview. Journal of the American Geriatrics Society, 42, 413–419. Greenfield, S., Kaplan, S., & Ware, J. E., Jr. (1985). Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520–528. Greenfield, S., Kaplan, S. H., Ware, J. E., Jr., Yano, E. M., & Frank, H. J. (1988). Patients’ participation in medical care: Effects on blood sugar control and quality of life in diabetes. Journal of General Internal Medicine, 3, 448–457. Gross, D. A., Zyzanski, S. J., Borawski, E. A., Cebul, R. D., & Stange, K. C. (1998). Patient satisfaction with time spent with their physician. Journal of Family Practice, 47, 133–137. Hall, J. A., & Dornan, M. C. (1988). What patients like about their medical care and how often they are asked: A meta-analysis of the satisfaction literature. Social Science and Medicine, 27, 935–939. Headache Study Group of The University of Western Ontario. (1986). Predictors of outcome in headache patients presenting to family physicians: A one year prospective study. Headache, 26, 285–294. Henbest, R. J., & Fehrsen, G. S. (1992). Patient-centredness: Is it applicable outside the West? Its measurement and effect on outcomes. Family Practice, 9, 311–317. Herman, J. (1997). Three unhurried consultations. Journal of Family Practice, 44, 313–315. Heszen-Klemens, I., & Lapinska, E. (1984). Doctor-patient interaction, patients’ health behavior and effects of treatment. Social Science and Medicine, 19, 9–18. Hickson, G. B., Clayton, E. W., Entman, S. S., Miller, C. S., Githens, P. B., Whetten-Goldstein, K., & Sloan, F. A. (1994). Obstetricians’ prior malpractice experience and patients’ satisfaction with care. Journal of the American Medical Association, 272, 1583–1587. Hickson, G. B., Clayton, E. W., Githens, P. B., & Sloan, F. A. (1992). Factors that prompted families to file medical malpractice claims following perinatal injuries. Journal of the American Medical Association, 267, 1359–1363. Hornberger, J., Thorn, D., & MaCurdy, T. (1997). Effects of a self-administered previsit questionnaire to enhance awareness of patients’ concerns in primary care. Journal of General Internal Medicine, 12, 597–606. Howie, J. G., Porter, A. M., Heaney, D. J., & Hopton, J. L. (1991). Long to short consultation ratio: A proxy measure of quality of care for general practice. British Journal of General Practice, 41, 48–54. Hulka, B. A., Kupper, L. L., Cassel, J. C., & Mayo, F. (1975). Doctor-patient communication and outcomes among diabetic patients. Journal of Community Health, 1, 15–27.

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Hull. F. M., & Hull, F. S. (1984). Time and the general practitioner: The patient’s view. Journal of the Royal College of General Practitioners, 34, 71–75. Jacobson, L. D., Wilkinson, C., & Owen, P. A. (1994). Is the potential of teenage consultations being missed? A study of consultation times in primary care. Family Practice, 11, 296–299. Johnson, J. E., Nail, L. M., Lauver, D., King, K. B., & Keys, H. (1988). Reducing the negative impact of radiation therapy on functional status. Cancer, 61, 46–51. Kaplan, S. H., Greenfield, S., & Ware, J. E., Jr. (1989). Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Medical Care, 275, S110–S127. Kinnersley, P., Stott, N., Peters, T. J., & Harvey, I. (1999). The patient-centredness of consultations and outcomes in primary care. British Journal of General Practice, 49, 711–716. Kjellgren, K. I., Ahlner, J., & Saljo, R. (1995). Taking antihypertensive medication: Controlling or co-operating with patients? International Journal of Cardiology, 47, 257–268. Korsch, B. M., Gozzi, E. K., & Francis, V. (1968). Gaps in doctor-patient communication: I. Doctor-patient interaction and patient satisfaction. Pediatrics, 42, 855–871. Lester, G. W., & Smith, S. G. (1993). Listening and talking to patients: A remedy for malpractice suits? Western Journal of Medicine, 158, 268–272. Levinson, W. (1994). Physician-patient communication: A key to malpractice prevention. Journal of the American Medical Association, 272, 1619–1620. Levinson, W., Roter, D. L., Mullooly, J. P., Dull, V. T., & Frankel, R. M. (1997). Physicianpatient communication: The relationship with malpractice claims among primary care physicians and surgeons. Journal of the American Medical Association, 277, 553–559. Ley, P. (1982). Satisfaction, compliance and communication. British Journal of Clinical Psychology, 21(Pt. 4), 241–254. Ley, P. (1985). Doctor-patient communication: Some quantitative estimates of the role of cognitive factors in non-compliance. Journal of Hypertension, 3(1)(Suppl. 3), S51–S55. Linn, M. W., Linn, B. S., & Stein, S. R. (1982). Satisfaction with ambulatory care and compliance in older patients. Medical Care, 20, 606–614. Marvel, M. K. (1993). Involvement with the psychosocial concerns of patients: Observations of practicing family physicians on a university faculty. Archives of Family Medicine, 2, 629–633. Marvel, M. K., Doherty, W. J., & Weiner, E. (1998). Medical interviewing by exemplary family physicians. Journal of Family Practice, 47, 343–348. McLane, C. G., Zyzanski, S. J., & Flocke, S. A. (1995). Factors associated with medication noncompliance in rural elderly hypertensive patients. American Journal of Hypertension, 8, 206–209. McWilliam, C. L., Brown, J. B., & Stewart, M. (2000). Breast cancer patients’ experiences of patient-doctor communication: A working relationship. Patient Education and Counselling, 39, 191–204. Mechanic, D., & Schlesinger, M. (1996). The impact of managed care on patients’ trust in medical care and their physicians. Journal of the American Medical Association, 275, 1693–1697. Orth, J. E., Stiles, W. B., Scherwitz, L., Hennrikus, D., & Vallbona, C. (1987). Patient exposition and provider explanation in routine interviews and hypertensive patients’ blood pressure control. Health Psychology, 6, 29–42. Pascoe, G. C. (1983). Patient satisfaction in primary health care: A literature review and analysis. Evaluation and Program Planning, 6, 185–210. Penchansky, R., & Macnee, C. (1994). Initiation of medical malpractice suits: A conceptualization and test. Medical Care, 32, 813–831.

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Pereles, L., & Russell, M. L. (1996). Needs for CME in geriatrics: 2. Physician priorities and perceptions of community representatives. Canadian Family Physician, 42, 632– 640. Rainey, L. C. (1985). Effects of preparatory patient education for radiation oncology patients. Cancer, 56, 1065–1061. Redelmeier, D. A., Molin, J. P., & Tibshirani, R. J. (1995). A randomised trial of compassionate care for the homeless in an emergency department. Lancet, 345, 1131–1134. Ridsdale, L., Morgan, M., & Morris, R. (1992). Doctors’ interviewing technique and its response to different booking time. Family Practice, 9, 57–60. Rivadeneyra, R., Elderkin-Thompson, V., Silver, R. C., & Waitzkin, H. (2000). Patient centeredness in medical encounters requiring an interpreter. American Journal of Medicine, 108, 470–474. Roland, M. O., Bartholomew, J., Courtenay, M. J., Morris, R. W., & Morrell, D. C. (1986). The “five minute” consultation: Effect of time constraint on verbal communication. British Medical Journal (Clinical Research Ed.), 292, 874–876. Roter, D. (1989). Which facets of communication have strong effects on outcome: A metaanalysis. In M. Stewart & D. Roter (Eds.), Communicating with medical patients (pp 183– 197). Newbury Park, CA: Sage. Roter, D. L., Hall, J. A., Kern, D. E., Barker, L. R., Cole, K. A., & Roca, R. P. (1995). Improving physicians’ interviewing skills and reducing patients’ emotional distress: A randomized clinical trial. Archives of Internal Medicine, 155, 1877–1884. Roter, D. L., Stewart, M., Putnam, S. M., Lipkin, M., Jr., Stiles, W., & Inui, T. S. (1997). Communication patterns of primary care physicians. Journal of the American Medical Association, 277, 350–356. Russell, N. K., & Roter, D. L. (1993). Health promotion counseling of chronic-disease patients during primary care visits. American Journal of Public Health, 83, 979–982. Salmon, P., Peters, S., & Stanley, I. (1999). Patients’ perceptions of medical explanations for somatisation disorders: Qualitative analysis. British Medical Journal, 318, 372–376. Salzman, C. (1995). Medication compliance in the elderly. Journal of Clinical Psychiatry, 56(Suppl. 1), 18–22. Sanders, P. S., & McBride, D. L. (1998). Malpractice prevention: Good doctor-patient communication. Minnesota Medicine, 81, 28–30. Sanson-Fisher, R. W., Campbell, E. M., Redman, S., & Hennrikus, D. J. (1989). Patientprovider interactions and patient outcomes. Diabetes Educator, 15, 134–138. Savage, R., & Armstrong, D. (1990). Effects of a general practitioner’s consulting style on patients’ satisfaction: A controlled study. British Medical Journal, 301, 968–970. Sbarbaro, J. A. (1990). The patient-physician relationship: Compliance revisited. Annals of Allergy, 64, 325–331. Selfe, S. A., Matthews, Z., & Stones, R. W. (1998). Factors influencing outcome in consultations for chronic pelvic pain. Journal of Women’s Health, 7, 1041–1048. Shapiro, R. S., Simpson, D. E., Lawrence, S. L., Talsky, A. M., Sobocinski, K. A., & Schiedermayer, D. L. (1989). A survey of sued and nonsued physicians and suing patients. Archives of Internal Medicine, 149, 2190–2196. Slovenko, R. (1999). Malpractice in psychotherapy. Forensic Psychiatry, 22, 1–15. Spiegel, D., Bloom, J. R., Kraemer, H. C., & Gottheil, E. (1989). Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet, 2, 888–891. Squier, R. W. (1990). A model of empathic understanding and adherence to treatment regimens in practitioner-patient relationships. Social Science and Medicine, 30, 325–339.

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Stange, K. C., Zyzanski, S. J., Jaen, C. R., Callahan, E. J., Kelly, R. B., Gillanders, W. R., Shank, J. C., Chao, J., Medalie, J. H., Miller, W. L., Crabtree, B. F., Flocke, S. A., Gilchrist, V. J., Langa, D. M., & Goodwin, M. A. (1998). Illuminating the “black box”: A description of 4454 patient visits to 138 family physicians. Journal of Family Practice, 46, 377–389. Starfield, B., Wray, C., Hess, K., Gross, R., Birk, P. S., & D’Lugoff, B. C. (1981). The influence of patient-practitioner agreement on outcome of care. American Journal of Public Health, 71, 127–131. Stewart, M. A. (1995). Effective physician-patient communication and health outcomes: A review. Canadian Medical Association Journal, 152, 1423–1433. Stewart, M., Brown, J. B., Weston, W. W., McWhinney, I. R., McWilliam, C. L., & Freeman, T. R. (1995). Patient-centered medicine: Transforming the clinical method. Thousand Oaks, CA: Sage. Stewart, M., Brown, J. B., Donner, A., McWhinney, I., Oates, J., Weston, W. W., & Jordan, J. (2000). The inpact of patient-centered care on outcomes. Journal of Family Practice, 49, 796–804. Svarstad, B. L. (1985). The relationship between patient communication and compliance. In D. D. Breimer, & P. Speiser (Eds.), Topics in Pharmaceutical Sciences (pp. 381–390). Amsterdam: Elsevier. Thomas, K. B. (1978). The consultation and the therapeutic illusion. British Medical Journal, 1, 1327–1328. Thomas, K. B. (1987). General practice consultations: Is there any point in being positive? British Medical Journal (Clinical Research Ed.), 294, 1200–1202. Thompson, S. C., Nanni, C., & Schwankovsky, L. (1990). Patient-oriented interventions to improve communication in a medical office visit. Health Psychology, 9, 390–404. Verby, J. E., Holden, P., & Davis, R. H. (1979). Peer review of consultations in primary care: The use of audiovisual recordings. British Medical Journal, 1(6179), 1686–1688. Vincent, C., Young, M., & Phillips, A. (1994). Why do people sue doctors? A study of patients and relatives taking legal action. Lancet, 343, 1609–1613. Ware, J. E., Davies-Avery, A. & Stewart, A. L. (1978). The measurement and meaning of patient satisfaction: A review of the recent literature. Health and Medical Care Services Review, 1, 1–15. Wasson, J. H., Sauvigne, A. E., Mogielnicki, R. P., Frey, W. G., Sox, C. H., Gaudette, C., & Rockwell, A. (1984). Continuity of outpatient medical care in elderly men: A randomized trial. Journal of the American Medical Association, 252, 2413–2417. Weiss, L. J., & Blustein, J. (1996). Faithful patients: The effect of long-term physician-patient relationships on the costs and use of health care by older Americans. American Journal of Public Health, 86, 1742–1747. Westcott, R. (1977). The length of consultations in general practice. Journal of the Royal College of General Practitioners, 27, 552–555. Williams, M., & Neal, R. D. (1998). Time for a change? The process of lengthening booking intervals in general practice. British Journal of General Practice, 48, 1783–1786. Williams, S., Weinman, J., Dale, J., & Newman, S. (1995). Patient expectations: What do primary care patients want from the GP and how far does meeting expectations affect patient satisfaction? Family Practice, 12, 193–201. Williams, S. J., & Calnan, M. (1991). Key determinants of consumer satisfaction with general practice. Family Practice, 8, 237–242. Wilson, A. (1991). Consultation length in general practice: A review. British Journal of General Practice, 41, 119–122.

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8 Medical Disclosure and Decision-Making: Excavating the Complexities of Physician-Patient Information Exchange Catherine M. Gillotti Purdue University Calumet

Words are the most powerful tool a doctor possesses, but words, like a two-edged sword, can maim as well as heal. (Lown, 1996, p. 61)

When it comes to communication, the (sometimes faulty) assumption is that the messages we exchange are true. In the health care setting, the truth is sometimes concealed for the patient’s benefit, distorted in an attempt to compassionately deliver bad news, or not processed by the patient because of its ramifications. In spite of most people’s attempts to cover up the truth, whether their intention is noble or malicious, usually the truth is eventually revealed (Thomasma, 1994). According to Thomasma (1994), there are four types of truth and five reasons why the truth is sometimes concealed in the health care context. The four types are direct truth, factual truth, personal truth, and interpretative truth. Direct truth includes answers to yes/no questions, factual truth is concerned with objective reality, personal truth is selfdisclosure, and interpretative truth involves the interpretation of the reasons behind the communication. Thomasma argued that interpretative or hermeneutical truth is the most complex kind of truth and is particularly relevant in the health care context. Thomasma questioned why the truth is still withheld in the health care context despite the complexity of interpretations of truth and the motivations of the communicators to be honest. He noted that the values of individual well-being and survival of the community and some people’s inability to absorb the truth can result in “necessary paternalism” and suppression of the truth (p. 377). Although Thomasma provided several compelling case studies in which paternalism seemed necessary, he also reminded us that we are entitled to the truth in order to make informed decisions. In the end, he argued that withholding

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the truth is only temporary. “In vino, veritas it is said. The truth will eventually come out, even if in a slip of the tongue. Its revelation, if it is to be controlled, must always aim at the good of the patient for the moment” (p. 382). The issues regarding truth-telling in the health care context are among the many that fall within the category of medical disclosure. Examining these issues closely reveals, at the core, the influence of language itself on the physician-patient relationship. Barnlund (1976) argued that human illness is experienced both physically and symbolically. Although physicians must treat physical conditions, Barnlund reminded care providers that communication, particularly language, can have a powerful influence on the well-being of the patient. Tardy (2000) drew a similar connection between communication and well-being in an examination of the role of self-disclosure in the physician-patient interaction, and suggested that balance in information sharing is key to the patient’s wellbeing. What information to provide, how much, when, and with whom are all logistical considerations for both patients and physicians in the often complex physician-patient interaction. This chapter includes a review of various topics related to medical disclosure in order to illuminate the utility of information in the medical context for patient decision-making. In any case of information sharing in the health care context, a decision, even if it is a decision to do nothing, results from the interaction. Utilizing problematic integration (PI) theory (Babrow, 1992; Babrow, Hines, & Kasch, 2000) as a way to understand the complexities of decision making in the health care context, this chapter explores the ethical ramifications of medical disclosure, bad news delivery, informed consent, and end-of-life decisions. MEDICAL DISCLOSURE

The physician-patient relationship has received a great deal of scholarly attention. Street (1992) argued that this relationship is crucial to the development of patient trust and informed decision-making through information exchange. Information giving can be done by either the provider or the patient; thus, medical disclosure is dyadic and interdependent. This section looks at studies that have addressed the implications of medical disclosure for both providers and patients. Researchers and clinicians have carefully examined physician-patient communication. Indeed, studies have been done on verbal communication in the physician-patient consultation (Bain, 1976; Beckman, Markakis, Suchman, & Frankel, 1994; Branch & Malik, 1993; Buckman, 1992), patient perceptions of physician communication (Cardello, Ray, & Pettey, 1995; Street, 1992), patient and physician explanatory models of illness (Helman, 1985), physician liking and expressed emotion (Hall, Epstein, DeCiantis, & McNeil, 1993), patient education about the medical interview (McGee & Cegala, 1998), various verbal and nonverbal coding schemes utilized in the analysis of the physicianpatient relationship (Roter & Frankel, 1992; Roter, Hall, & Katz, 1988; Stiles & Putnam, 1989; Wasserman & Inui, 1983), the impact of provider communication on health outcomes (Greenfield, Kaplan, & Ware, 1985), and explanatory models of the physician-patient relationship (Emanuel & Emanuel, 1992; Epstein, Campbell, Cohen-Cole, McWinney, & Smilkstein, 1993; Stewart, Brown, Weston, McWhinncy, McWilliam, & Freeman, 1995). Regardless of the variables examined, the literature continuously points to the undeniable impact of communication on the physician-patient relationship. DiMatteo (1979) stated that the physician-patient relationship is emotionally charged and that attention should be paid to the interpersonal nature of the relationship. The

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author suggested that there has been a division between treating the patient scientifically and treating the patient interpersonally. Additionally, DiMatteo noted that, historically, bedside manner was really all that physicians had to offer their patients. The author called for acknowledgment of the importance of the socioemotional dimensions of physicianpatient interaction. It has been suggested that attention to these dimensions will increase patient compliance and satisfaction and possibly deter malpractice litigation. The practice of medicine has evolved over the centuries, and so has the nature of the physician-patient relationship. However, certain aspects of this relationship remain constant, including the need for information sharing between providers and patients and the existence of obstacles that can inhibit the exchange of information. Truth-Telling: The Provider’s Perspective

As Waitzkin (1985) stated, Hippocrates argued that it was the physician’s responsibility to determine how much information patients should receive about their condition. Waitzkin suggested that in contemporary Western medicine there are problems of withholding information, but patients more frequently are asserting their right to information. Using uncertainty, power, and social class language differences as foundations for explanation, Waitzkin examined information giving in the physician-patient relationship. The author hypothesized that physicians would withhold information in an attempt to maintain uncertainty and retain power. The study findings did not conclusively demonstrate these points. In fact, the results indicated that physicians provided more information under conditions of diagnostic uncertainty. Additionally, there was a relationship between physician social origin and amount of information provided, with middle- and upper-class physicians providing more information and patients of higher social class receiving more information (Waitzkin, 1985). These results suggest that, even though the concern to “do no harm” was the original principle upon which physicians decided whether to withhold information, it does not necessarily influence information dissemination decisions in the same way today. Goldman (1980) suggested that truth-telling and informed consent are two fundamental issues of medical ethics. Furthermore, he pointed out that patient rights are essential for self-determination and control. He argued that there are several reasons why patients should make their own decisions regarding their health: First is the presumption of their being the best judges of their own interests, which may depend upon personal value orderings known only to them. . . . The second reason is the independent value to self-determination, at least in regard to important decisions (in medical contexts decisions may involve life and death alternatives, affect the completion of major life projects, or affect bodily integrity) (p. 159)

Goldman also pointed out that self-determination incorporates more specific rights, including the right to the truth about health conditions, treatment risks, and alternative treatments. However, when physicians make decisions to withhold information from patients, they might still be exercising the Hippocratic principle. Truth-telling, informed consent, and self-determination are key to the protection of patient rights. Goldman stated that the fundamental right to information in the health care context is associated with the right to make decisions that concern one’s own well-being and life. The information that patients give to providers is of course important to their well-being.

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Truth-Telling: The Patient’s Perspective

Rosenfeld (2000) provided an overview of the philosophical and relational issues related to the dialectical tension between the need for privacy and the need “to be known” (p. 4). The author suggested that it is through self-disclosure that a person establishes a presence in the world and heals him- or herself. Tardy (2000) examined these notions as they operate in the health care context. In an analysis of the work of Sydney Jourard, Tardy reviewed the literature connecting self-disclosure to positive health outcomes, including increased resistance to illness and prevention of hypertension and cardiovascular disease. Tardy then investigated Jourard’s hypothesis that self-disclosure is positively correlated with health. The study results indicated general support for Jourard’s work, but Tardy called for more research to examine specific factors that connect self-disclosure to health outcome. Accepting the notion that self-disclosure can have both psychological and physiological benefits, it is appropriate to examine issues of patient privacy and the impact of self-disclosure on physician-patient interaction (Ashworth, Longmate, & Morrison, 1992; Coleman & Shellow, 1995; Crockford, Holloway, & Walker, 1993; Deering, 1999; Parrott, Duncan, & Duggan, 2000; Weijts, 1994; Weiss, 1986). Self-disclosure has been studied in relation to diseases that have a social stigma, such as cancer and HIV/AIDS (Greene, 2000; Mitsuya,1997; Mystakidou, 1996; Schofield, Walkom, & Sanson-Fisher, 1997; Welch Cline & McKenzie, 2000). For example, Greene (2000) examined how and why patients who are HIV positive or have full-blown AIDS disclose their health status given the negative social perceptions of the disease. According to Greene, studying disclosure in this patient population is particularly important because of the increase in the number of HIV-positive patients and the physiological and psychological benefits of disclosure. Researchers also have examined levels of patient participation in health care interactions (Ashworth et al., 1992; Parrott et al., 2000; Weiss, 1986). The information that patients provide is essential for diagnosis and treatment, yet some patients withhold vital information from their providers. Parrott et al. (2000) explored the reasons that patients conceal information by explicating various threats to patient privacy. In particular, patients withhold information because of cultural differences; confidentiality breaches due to team approaches to medicine; the personal characteristics of the patient, such as age and socioeconomic status; the nature of the interaction (e.g., providers can inhibit communication through interruptions); and threats to the patient’s identity, as explained by the theories of impression management (Goffman, 1959) and politeness theory (Brown & Levinson, 1978; Parrott et al., 2000). In an educational article for nurses, Deering (1999) reviewed the therapeutic goals of provider self-disclosure as a means of provoking disclosure on the part of patients. The more specific goals of provider self-disclosure include patient education, helping patients to realize their reactions are normal, promoting “emotional catharsis,” and showing support to patients. The research in this area clearly illustrates the benefits of patient and provider selfdisclosure. Goldman (1980), Thomasma (1994), and Tardy (2000) all called for balanced information sharing that took into account the legal, ethical, and interpersonal ramifications of information exchange in this context. Of course, consideration of all the factors affecting medical disclosure and patient self-disclosure is all the more important during the delivery of bad news.

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Bad News Delivery

Studies of the delivery of bad news by health care providers reveal that providers are concerned about being effective and offer advice to each other on delivery strategies (Brewin, 1991; Buckman, 1992; Charlton, 1992; Davis, 1991; Edlich & Kubler-Ross, 1991; Fallowfield, 1993; Faulkner, Argent, Jones, O’Keefe, 1995; Graham, 1991; Kaiser, 1993; Krahn, Hallum, & Kime, 1993; Laurent, 1991; Maynard, 1989, 1991; McLauchlan, 1990; Miranda & Brody, 1992; Ptacek & Eberhardt, 1996; Quill & Townsend, 1991; Rabow & McPhee, 1999; Speck, 1991; Statham & Dimavicius, 1992). Practicing physicians, many of whom have learned delivery techniques through trial and error rather than formal training, are the main sources of advice. Many studies stress that little training is provided in medical schools and residency programs and more formal education is needed in this area (Davis, 1991; Fallowfield, 1993; Graham, 1991; Laurent, 1991; McLauchlan, 1990; Miranda & Brody, 1992; Novack, Volk, Drossman, & Lipkin, 1993; Pearse & Cooper, 1993; Quill & Townsend, 1991; Rappaport & Witzke, 1993). This is not to say that studies on communication competencies of medical students and residents have not been conducted at all (Eggly et al., 1997; Gillotti, 1996; Novack et al., 1993; Rappaport & Witzke, 1993; Sloan, Donnelly, Johnson, Schwartz, & Strodel, 1994), however, such studies reveal that more training is needed, as the task is particularly daunting. Lown (1996) questioned why physicians depict medical situations in the most dire terms. He suggested several contributing factors. First, negative predictions are embedded in the culture. Second, due to the prevalence of malpractice litigation, physicians feel compelled to tell the patient the uncensored truth. However, as Lown emphasized, bluntly stating the prognosis without some kind words could lead the patient to view the physician as uncompassionate and inspire future litigation. Lown also recognized that fear caused by the negative presentation of health information can undermine decision making. Charlton (1992) likewise emphasized the importance of attending to the way the news is delivered. According to Charlton, a patient’s ability to cope depends on several factors, including the prognosis and how the news is delivered. The attention given to developing appropriate strategies for bad news delivery points to the complexities of the task while reinforcing the obligation of physicians to inform patients of their conditions. Bad news delivery and informed consent are inextricably tied to patient rights and autonomy (Charlton, 1992; Goldman, 1980; Waitzkin, 1985). In fact, the literature appears to reflect a tug-of-war between necessary paternalism and patient self-determination and autonomy (Charlton, 1992; Goldman, 1980; Thomasma, 1994). Goldman (1980) thoroughly examined the arguments for and against medical paternalism. He proposed two conditions under which physicians may withhold information: “One is where the truth will cause direct harm-depression or loss of continued will to live. The other is where informing may be instrumentally harmful in leading to a choice of wrong treatment or none at all” (p. 171). As a counterargument to paternalism, Goldman stated that it is unlikely that safeguarding patient rights will lead to harm. He also argued that, even if a patient may experience depression upon hearing the truth about his or her prognosis, a greater harm will be committed by denying the patient his or her rights. Although there is a reasonable argument for medical paternalism with roots in the Hippocratic Oath, patients continue to assert their right for full disclosure, especially when the information is perceived as bad news. Sell, Devlin, Bourke, Munro, Corris, and Gibson (1993) found that 46 out of 50 patients diagnosised with lung cancer wanted to know the truth about their diagnosis and felt

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their physicians had done the right thing in telling them. Additionally, 31 of the 46 felt more reassured after hearing the diagnosis. Davis (1991) contended that humans are more resilient than may be thought and that individuals deserve to know the truth about their health status if they want it. The key factor is respecting the patient’s wish for disclosure. There are times when patients do not wish to know information, bad news in particular, due to various cultural values (Carrese & Rhodes, 2000). For example, Carrese and Rhodes (2000) found that the receipt of negative information and subsequent planning can conflict with traditional Navajo beliefs. The authors explored “culturally competent” strategies for these interactions (Carrese & Rhodes, 2000, p. 92). Because of the general movement toward disclosing bad news, health communication scholars are doing more research on clinicians’ approaches to the delivery of bad news and the obstacles inherent in this particular type of interaction (Gillotti & Applegate, 2000). Gillotti and Applegate (2000) reviewed the medical literature on the various obstacles, which include dealing with the uncertainty of predicting medical outcomes, feelings of failure on the part of health care providers, dealing with the expressed emotions of both patient and provider, and lack of training in the delivery of bad news. Much of the literature on bad news delivery is atheoretical. However, Ptacek and Eberhardt (1996) and Gillotti and Applegate (2000) offered different theoretical frameworks for understanding and guiding the delivery of bad news. Ptacek and Eberhardt argued that, due to the stressful nature of the interaction for both the provider and the patient, bad news delivery is best understood using a stress and coping model. By contrast, Gillotti and Applegate argued that, due to the individual differences in communication competence between the provider and the patient, bad news delivery is best conceptualized from a constructivist, patient-centered perspective. Building on this perspective, Gillotti, Thompson, and McNeilis (2001) examined bad news delivery from a competence perspective. The literature on bad news delivery reveals minimal theory development and little insight into the connection between bad news delivery and medical decisions. Several authors have made only passing reference to future treatment plans and options once the news is delivered (Brewin, 1991; Davis, 1991; Fallowfield, 1993; Faulkner et al., 1995; Kaiser, 1993; Quill & Townsend, 1991; Statham & Dimavicius, 1992). Although much has been written on the subject of medical decision-making, few studies have explored the relationship between initial bad news delivery and the ultimate effect on the patient’s treatment decisions. One piece of advice that transcends debate over disclosure and interactional difficulties in the delivery of bad news was offered by Rabow and McPhee (1999) when they said, “To manage bad news well, the clinician must place his or her relationship with the patient, the strength and reality of their human bond, over the insecurity of disease, the threat of dissolution, and the fear of death” (p. 263). Having established the historical trend toward truth-telling and the obligation to protect the patient from harm while respecting the patient’s right to self-determination, an explanation of the ethical foundations of informed consent follows. INFORMED CONSENT “The most important single contribution of research ethical codes for protection of human subjects to clinical practice is the doctrine of informed consent” (Kagarise & Sheldon, 2000, p. 39).

The concern for patient rights and autonomy evolved from the horrors of the Second World War and the Nuremberg Trials that followed, in which physicians were held accountable

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for the medical experiments they performed on prisoners—experiments in direct violation of the Hippocratic Oath (Dennis, 1999; Kagarise & Sheldon, 2000; Woodward, 1999). Kagarise and Sheldon (2000) provide an excellent review of the historical events leading to the current concern for patient rights. Additionally, they provide a theory of translational ethics to address the protection of human subjects in clinical practice. Initially it was the 10 Nuremberg principles that set the expected standards of behavior for physicians (Kagarise & Sheldon, 2000): After the Nuremberg trials, in 1947, 10 principles of conduct expected of physicians in the conduct of research on human subjects were described in the Nuremberg Code on the Ethics of Human Research: voluntary consent; an expected beneficial outcome; prior experimentation on animals; avoidance of unnecessary pain and horror; avoidance of risk or disablement; risk taking not to exceed expected advantages; protection against the possibility, however slight, of injury, disablement, or death; scientifically and technically qualified experimenters; the subject’s freedom to retract consent; and the experimenter’s obligation to stop the experiment when continuation will result in participant injury or death (p. 39).

Although the tenets of the Nuremberg Code can be found in operation in medical and social science research today, between 1947 and 1975 the code was generally not adhered to in research endeavors (Kagarise & Sheldon, 2000). In 1948, the World Health Organization issued the Declaration of Geneva, which was based on the Hippocratic Oath and the Nuremberg Code, to address physician professionalism outside of research, and the International Code of Medical Ethics was constructed in 1949 (Kagarise & Sheldon, 2000). Medical ethics reached a turning point in 1975 with the Declaration of Helsinki, which emphasized the importance of conducting proper research in accordance to the Nuremberg Code. These documents laid the foundation for current conceptions of medical ethics (Goldman, 1980; Kagarise & Sheldon, 2000; Woodward, 1999). Woodward (1999) claimed that, although the Nuremberg Code and the Declaration of Helsinki are different documents, they share a similar concern for the protection of patient rights and the rights of research participants, placing these rights above scientific and societal advancement. Dennis (1999) discussed the decisions made between 1905 and 1914 that form the legal grounding for informed consent in the United States. These decisions set precedent for future legislation. One key document was the Belmont Report of 1974, written by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. This report increased the public’s concern for patient rights and autonomy (Kagarise & Sheldon, 2000). Recent legislation pertinent to patient rights includes the Patient Self-Determination Act, which was passed as part of the Omnibus Budget Reconciliation Act of 1990 (Young & Jex, 1992). “The Act follows a historical trend led by doctrines of informed consent and increasing patient autonomy regarding rights to accept or refuse medical treatment to execute advance directives” (Young & Jex, 1992, p. 107). According to Young and Jex (1992), the act requires medical facilities to adhere to the following stipulations: First, written documentation must be provided to patients upon admission regarding their right under the law to accept or refuse medical treatment and to execute advance directives. Patients must also be given written information on the policies of the institution regarding the implementation of such rights. Patients must be asked whether or not they have an advance directive, and their answers should be documented in the medical record. Execution

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of advance directives can in no way be required as a condition of providing medical treatment. Each institution must also ensure compliance with state law (statutory or case law) respecting advance directives. (p. 108)

Shapiro (1992) examined issues not clearly addressed by the Patient Self-Determination Act. These issues include patient advocates making decisions when the patient is unable; the transfer of patients to other facilities and the adherence to the patient’s advance directive; the ambiguity of the advance directive reflecting the patient’s actual wishes; advance directives that are broader than state statutes; the obligation of psychiatric facilities to adhere to such directives; age limitations for advance directives; and finally instances where the physician does not have a copy of the advance directive. After 50 years of doctrine and legislation, patient autonomy and patient rights continue to be the focus of research. Issues involving informed consent include the adequacy of hospital consent forms (Bottrell, Alpert, Fischbach, & Emanuel, 2000); obtaining informed consent from vulnerable groups (Dennis, 1999); concern for proper obtainment of consent (Bottrell et al., 2000; Kirsch, 2000); obtaining consent by proxy (Lashley, Talley, Lands, & Keyserlingk, 2000); ensuring the protection of patient medical information (Longhway, 1999); obtaining consent for tissue research (Pentz, Young, Amos, Hess, Wei, & Anderlik, 1999); and educating medical students and residents on obtaining informed consent (Angelos, DeRosa, Derossis, & Kim, 1999; Roberts, Mines, Voss, Koinis, Mitchell, Obenshain, & McCarty, 1999). Interestingly, Woodward (1999) claimed that the expediency of institutional reviews and the rush to advance medicine contribute to the weakening of human subject protection: “It is the rapid march of science itself that is largely responsible for the pressures to weaken subject protections” (p. 1948). Systematically addressing the various stipulations of the Nuremberg Code and the Declaration of Helsinki, Woodward (1999) examined various factors affecting the protection of human subjects. He cited increased medical research funding, computer technology, and new research technology as factors leading to a demand for larger participant pools, easier subject recruitment, and easier access to patient medical records. All of these factors set the stage for possible violation of patient rights as outlined by the above documents. Further, Woodward suggested that the demands on institutional review boards, which are set up to protect patient and participant rights, may make it difficult to perform adequate and thorough reviews of research protocols. Finally, he argued that the line between clinical practice and medical research is blurring: “The expansion of research using a variety of imaging and monitoring devices, human biological materials, and information processing technologies may, before long, turn every patient into a research subject (or rather, research object) simply by virtue of a decision to seek medical care” (p. 1952). Not surprisingly, he called for a renewed commitment to the protection of human subjects. While his perspective may seem alarming, Woodward’s (1999) reasoning punctuates the continued debate between altruistic research endeavors and the immediate benefit to the patient/research participant. Shuchman (1999) reports on several media stories about the unethical enlisting of psychiatric patients into clinical trials which resulted in patient deaths and subsequent attempts by the physicians involved to cover up their participation. Kirsch (2000) argued that informed consent has become an exercise in legal protection rather than a tool to inform patients of various risk factors. He stated that he received no formal training on how to obtain consent and that the emphasis in practice is to “document” the consent, not actually “obtain it” (p. 588). Further, he argued that the very signing of

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an informed consent form demonstrates a “trust deficit” between physician and patient (p. 588). He concluded by claiming that informed consent is the foundation of medical ethics, emphasizing that both physicians and patients will benefit from taking the issue more seriously. Bottrell et al. (2000) conducted a content analysis of 540 informed consent forms from 157 hospitals across the nation. The researchers hypothesized that the informed consent forms would not meet the accepted standards. The results indicated that, although 96% of the forms adequately indicated the nature of the procedure, they did not always clearly state the risks, benefits, and alternatives. In fact, only 26% of the forms included all four items. Echoing Kirsch’s (2000) concern, the authors suggested that the current forms do not facilitate the process of gaining truly informed consent (i.e., they do not help the patient make an informed decision). They propose an alternative form that covers the procedure, risks, benefits, and alternatives. Although many clinicians have never received formal training in informed consent procedures, researchers are studying the communication skills of current medical students and their ability to obtain informed consent. Roberts et al. (1999) conducted a study of 71 senior medical students using videotapes of standardized patient interactions. The students’ task was to obtain informed consent for a cardiac catheterization from a standardized patient expressing concern about the procedure. The patient rated each student on informed consent procedures and communication skills. The students received high scores on both checklists, and the authors suggested using this form of ethical competency assessment in medical education. Also, they noted that obtaining informed consent requires more than communicative abilities alone. On the other hand, the findings confirm the correlation between the physician-patient relationship, communication skills, and obtaining informed consent (Roberts et al., 1999). Summary

The research cited in the preceding sections provides the historical foundations for the ethical delivery of diagnostic and prognostic information between physician and patient. Clearly, there are many legal and ethical considerations involved in medical disclosure, in particular, the delivery of bad news, and these should govern the decisions of clinicians on whether to provide patients with information. Although the practice of medical disclosure has shifted over time—from the withholding of information for the protection of patient well-being to the giving of information for the same reason—respect for the Hippocratic Oath remains steadfast, as indicated by the modern doctrine of informed consent. The next step is to consider the influence of information on medical decision-making. MEDICAL DECISION-MAKING

Once patients have been provided information about their condition, they have to process that information to decide their best course of action. According to Braddock, Edwards, Hasenberg, Laidley, and Levinson (1999), little is known about the discussions taking place between physicians and patients to ensure that the patients are informed and participate as equals in the decision-making process. They therefore analyzed 1,057 interactions that occurred during clinical office visits in order to assess informed decision-making between patients and physicians. The authors developed seven criteria for defining informed decision-making, including patient participation and preferences; discussion of the nature of the decision; and discussion of risks, benefits, alternatives, uncertainties, and

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patient understanding. A content analysis of the interactions revealed there were 3,552 clinical decisions made but only 9% fully met the seven criteria. The authors concluded that more effort needs to be devoted to meeting all the criteria, even for low-complexity decisions. Foley (1999) encouraged physicians, patients, and families to work together in communicating specific goals for treatment. There are times when patients can no longer make decisions for themselves and must rely on family members to be their advocates. The most common documents for prearranging life-sustaining treatments are advance directives, living wills, and powers of attorney for health care (Gordon & Tolle, 1991). Even with one of these documents in place, family members must know the patient’s wishes, as they will most likely serve as decision-making surrogates when the patient no longer is able to communicate. Sulmasy, Terry, Weisman, Miller, Stallings, Vettese, and Haller (1998) studied the accuracy of family members’ substituted judgments for patients with terminal illnesses. These authors found that patient surrogates were only 66% correct in predicting the patient’s wishes. They concluded that a variety of factors impact the accuracy of surrogate judgments and that accuracy would improve if clinicians had more frank discussions with terminally ill patients about their prognosis. Another factor impacting end-of-life decisions is managed care. Kuczewski and DeVita (1998) found that patients and family members need to know the financial ramifications of treatment options in end-of-life care but that whose responsibility it is to provide this information is often unclear. They present a poignant case study where the ethical consultant for the hospital was called in by the hospital social worker to speak to the family of a terminally ill patient. The social worker was concerned that the patient’s length of stay had become too long and that reimbursement would not be provided to the patient by the insurance company. The social worker did not clearly communicate that this was the concern and instead told the consultant the family was “conflicted.” The financial concerns were not communicated to the family, nor to the physician, and thus were not factored into subsequent decisions about hospice care. Kuczewski and DeVita call for disclosure of significant billing information so that family members can include this information in the decision-making process. Cases like this demonstrate the ongoing need for open communication between providers, patients, and families. Provider-patient partnerships have been advocated in other articles (Brody, 1980; Kasper, Mulley, & Wennberg, 1992; Quill, 1983). Kasper et al. (1992) developed the Shared Decision-Making Program, which is an interactive video program used jointly by clinicians and patients to discuss treatment options. Additionally, researchers have addressed a variety of other decision-related topics, including decision-making assistance for elderly cancer patients (Lewis, Pearson, Corcoran-Perry, & Narayan, 1997); decisionmaking and CPR (Kerridge, Pearson, Rolfe, & Lowe, 1998); the impact of emotion on patient decision-making (Redelmeier, Rozin, & Kahneman, 1993; P. A. Shapiro & Muskin, 1993); and decision-making, consent, and resuscitation (Ardagh, 1999). Clarke and Evans (1998) explained that there are many obstacles to medical decisionmaking, including the complexity of interpreting the statistical results of medical research to determine the best treatment options, the influence of the media on patient perceptions of options, physician preferences for certain treatments and procedures, the language with which options are communicated and framed in terms of uncertainty and risk, patient and physician emotions, and cost. There is yet an entirely separate body of research devoted to end-of-life decisions. Researchers have addressed issues related to self-determination and advance directives

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(Basile, 1998; Ersek, Kagawa-Singer, Barnes, Blackhall, & Koenig, 1998; Nolan & Bruder, 1997; Ott, 1999; Srebnik & La Fond, 1999), the impact of managed care on end-of-life decisions (Kuczewski & DeVita, 1998), discussions of pain management with terminal illness (Foley, 1999), the ethical and legal issues involved in physician-assisted suicide (Gostin, 1997; McCue & Cohen, 1999; Meisel, Jernigan, & Youngner, 1999; Ryan, 1998), patient education on life-sustaining treatments (Brandenburg & Gifford, 1997), patient attitudes about life-sustaining treatments (Blackhall, Frank, Murphy, Michel, Palmer, & Azen, 1999), end-of-life decisions in critical care units (Sprung & Oppenheim, 1998), end-of-life decisions for nephrology patients (Cooper, 1998; Loftin & Beumer, 1998), protocols for making end-of-life decisions (Fry, 1998; Stoeckle, Doorley, & McArdle, 1998), and medical education and end-of-life decisions (Danis, Federman, Fins, Fox, Kastenbaum, Lanken, Long, Lowenstein, Lynn Rouse, & Tulsky, 1999; Gordon & Tolle, 1991; Hayes, Stoudemire, Kinlaw, Dell, & Loomis, 1999). Common to all of the articles is a concern for the protection of self-determination. Gostin (1997) provided a detailed history of legal cases addressing end-of-life issues ranging from withholding treatment to physician-assisted suicide. In regard to refusal of treatment, Gostin states that the courts have ruled that the right to refuse treatment is protected by the U.S. Constitution, specifically the Due Process Clause of the Fourteenth Amendment. At the same time, the Supreme Court found that assistance in committing suicide is not a protected liberty of the Due Process Clause. McCue and Cohen (1999) detailed Sigmund Freud’s battle with cancer and his eventual voluntary active euthanasia to raise some interesting questions about the protection of selfdetermination in the dying process. It has been pointed out that terminally ill patients may make irrational decisions to end their own lives. However, the authors suggested that some terminally ill patients make the decision to commit active euthanasia well before the disease and/or depression over the illness could affect their capacity to decide such things: “Just as Freud chose to live as long as life was personally meaningful, and die the death he chose at the hands of his trusted physician, Max Schur, we believe that it is inevitable that more terminally ill patients will demand physician assistance in a quick, controlled, and reconciled death when life’s potential has been exhausted and death is imminent” (p. 1521). Physician-assisted suicide is only one end-of-life option, and clearly it is not within the scope of this chapter to even begin to explore the ethical, legal, and moral ramifications of the right to die. People obviously disagree over the role clinicians should play in active euthanasia. However, what is unequivocal and reiterated by all the authors cited above is the need to protect the right of patients to make their own end-of-life decisions. There are specific guidelines for clinicians to help patients and family members make these often difficult decisions (Blatt, 1999; Fry, 1998). Fry (1998) suggested that nurses have four responsibilities in end-of-life decisions: to be a patient advocate, to relieve the patient’s pain and suffering, to provide comfort, and to avoid active euthanasia or assisted suicide. According to Fry, nurses have an ethical obligation to make sure that patients and family members are fully informed of all treatment options and that the patients are as comfortable and free from pain as possible. Blatt (1999) suggested several strategies for helping family members make medical decisions for the patient. First, the health care providers need to establish a relationship with the family members. Second, those providers who have been caring for the patient consistently should be the ones to deliver information to the family. Third, the providers, if necessary, should help the family members come to a consensus. Finally, once a decision has been reached, the providers should support the family’s decision.

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Summary

Clearly, knowing how much information, what information, when to give it, and how to deliver diagnostic news entailing potential negative outcomes is an ongoing challenge for clinicians as they continue to uphold current ethical and legal standards. Besides the obstacles to bad news delivery described by Gillotti and Applegate (2000), the obstacles to decision-making described by Clarke and Evans (1998), and the ethical and legal obligations described by Goldman (1980), Kagarise and Sheldon (2000), and Gostin (1997), clinicians are faced with myriad communicative challenges as they attempt to assist patients in making medical decisions. Given the need to weigh difficult and uncertain outcomes based on the information provided to patients by physicians, coupled with the values and beliefs about life and death that patients bring with them to each interaction, perhaps the issues involved in medical decision-making are best understood from the perspective of problematic integration theory (Babrow, 1992; Babrow et al., 2000). PROBLEMATIC INTEGRATION THEORY

According to Babrow et al. (2000), problematic integration theory is a general theory that addresses uncertainty and communication. Babrow (1992) stated that there are two assumptions that are integral to the theory. First, people have a probabilistic orientation to the world, in which certain outcomes arise. Second, people have an evaluative orientation toward possible outcomes. The health care context lends itself to the application of this theory because of the inherent uncertainty of health care and the probabilistic nature of treatment options. Babrow et al. (2000) stated that probabilistic and evaluative orientations are integrated into experience. Hence, communication can simultaneously influence the probability of an outcome as well as the evaluation of that outcome. “For now it is enough to note that communication patterns can shape the structures we use to interpret messages about probability and value” (Babrow, 1992, p. 101). With this in mind, Babrow suggested that integration of probability and value becomes more difficult with divergence, meaning that the more probable an outcome is and the more negative its evaluation, the more difficult it will be to integrate the outcome into experience. “A basic integrative predicament arises when there is a discrepancy between what we believe to be so and what we want to be so (either retrospectively, in the present, or prospectively)” (p. 100). Babrow et al. (2000) stated that persons experiencing medical problems are confronted with a multitude of integrative dilemmas. In addition to the synergistic role of communication and its influence on probability and evaluation, a person’s emotions affect the process, since they can shape communication and interpretation (Babrow, 1992). This highlights the importance of this theory for understanding bad news delivery and decision-making, particularly end-of-life decisionsmaking, as these explanations of illness will inevitably be laden with emotion (Clark & Evans, 1998; DiMatteo, 1979; Gillotti & Applegate, 2000; Lown, 1996; Redelmeier et al., 1993; P. A. Shapiro & Muskin, 1993). Babrow et al. (2000) argued that how uncertainty is interpreted in this context depends on what information is provided to the patient. They discussed several message features that are key to reducing uncertainty, including clarity, completeness, volume, accuracy, source ethos, ambiguity, applicability, and consistency. Importantly, Babrow et al. recognized the relativity of the interpretation of each of these features by suggesting that what is too much information for one person is not enough for another. Babrow (1992) discusses the importance of the rhetorical choices made by communicators. “Depending on their

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awareness of its disturbing potential, communicators make rhetorical choices in coping with the difficulties inherent in expressing news of diverging probability and evaluation” (Babrow, 1992, p. 105). Thus, the language the provider uses to communicate diagnostic and prognostic news and the treatment options available to the patient are crucial to the patient’s ability to make reasonable decisions. How people make decisions has been studied for centuries. Although some people base their decisions upon logic and reason, others base their decisions upon what is reasonable to them (Perelman & Tyteca, 1969). In other words, logic is not always the guiding factor, in decision-making; rather, what is reasonable to individuals is a guiding factor, and reasonableness is relative to individuals and their values and beliefs. “Common sense regularly opposes facts to theories, truths to opinions, and that which is objective to that which is not. By this opposition it indicates what opinions are preferred to others, whether or not the preference be based on generally accepted criteria” (Perelman & Tyteca, 1969, p. 511). What is crucial to this rhetorical perspective is the understanding that individuals’ value systems arise from their language communities (Perelman & Tyteca, 1969). What language is used to present options for a decision becomes crucial, and thus the rhetor must pay attention to the audience. This recognition of the importance of the audience of a medical message and of the values that patients bring to medical interactions is embedded in problematic integration theory and provides insight into the complexity of medical decision-making. CONCLUSION

There are several themes that emerge from the literature on medical disclosure, bad news delivery, informed consent, end of life decisions and problematic integration theory. These themes include a concern for the ethical obligation of physicians to disclose diagnostic and prognostic information to patients even when the news is bad; a movement away from medical paternalism to patient self-determination and control; the need for patient advocacy by family members and care providers; and a recognition that many factors, such as affect, communication, attitude toward risk, the physician-patient relationship, and patient beliefs affect medical decision-making. This review uncovers the foundational legal and ethical doctrines that underpin the concern for patient self-determination. While the current trends favor patient autonomy, we must keep in mind that sometimes others must make decisions for us when we are unable. The balancing act between truth and hope, autonomy and dependency, is often tough to negotiate, especially with end-of-life decisions. Unfortunately, medicine is not an exact science in which all outcomes are known. Medical care providers can only aid in patient decision-making through open and honest communication. As providers seek to assist patients in making decisions, both providers and patients might benefit by taking to heart the following sentiment: “Clinicians are not responsible for knowing the answers to patients’ deeply personal and existential questions; they are called on to be present as witnesses to their patients’ suffering and to respect the vulnerability created by the news they bear” (Rabow & McPhee, 1999, p. 263). REFERENCES Angelos, P., DaRosa, D. A., Derossis, A. M., & Kim, B. (1999). Medical ethics curriculum for surgical residents: Results of a pilot project. Surgery, 126, 701–705. Ardagh, M. (1999). Resurrecting autonomy during resuscitation: The concept of professional substituted judgment. Journal of Medical Ethics, 25, 375–378.

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Gordon, G. H., & Tolle, S. W. (1991). Discussing life-sustaining treatment: A teaching program for residents. Archives of Internal Medicine, 151, 567–570. Gostin, L. O. (1997). Deciding life and death in the courtroom. Journal of the American Medical Association, 278, 1523–1528. Graham, J. R. (1991). Touching and imparting of bad news. Lancet, 337, 1608–1609. Greene, K. (2000). Disclosure of chronic illness varies by topic and target: The role of stigma and boundaries in willingness to disclose. In S. Petronio (Ed.), Balancing the secrets of private disclosures (pp. 123–135). Mahwah, NJ: Lawrence Erlbaum Associates. Greenfield, S., Kaplan, S., & Ware, J. E. (1985). Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520–528. Hall, J. A., Epstein, A. M., DeCiantis, M. L., & McNeil, B. J. (1993). Physicians’ liking for their patients: More evidence for the role of affect in medical care. Health Psychology, 12, 140–146. Hayes, R. P., Stoudemire, A. S., Kinlaw, K., Dell, M. L., & Loomis, A. (1999). Changing attitudes about end-of-life decision making of medical students during third-year clinical clerkships. Psychosomatics, 40, 205–211. Helman, C. G. (1985). Communication in primary care: The role of patient and practitioner explanatory models. Social Science and Medicine, 20, 923–931. Kagarise, M. J., & Sheldon, G. F. (2000). Translational ethics: A perspective for the new millennium. Archives of Surgery, 135, 39–45. Kaiser, R. M. (1993, October). The challenge of breaking bad news. Hospital Practice, pp. 8–14. Kasper, J. F., Mulley, A. G., & Wennberg, J. E. (1992, June). Developing shared decisionmaking programs to improve the quality of health care. QRB, pp. 183–190. Kerridge, I. H., Pearson, S., Rolfe, I. E., & Lowe, M. (1998). Decision making in CPR: Attitudes of hospital patients and healthcare professionals. Medical Journal of Australia, 169, 128–131. Kirsch, M. (2000). The myth of informed consent. American Journal of Gastroenterology, 95, 588–589. Krahn, G. L., Hallum, A., & Kime, C. (1993). Are there good ways to give “bad news”? Pediatrics, 91, 578–582. Kuczewski, M. G., & DeVita, M. (1998). Managed care and end-of-life decisions: Learning to live ungagged. Archives of Internal Medicine, 158, 2424–2428. Lashley, M., Talley, W., Lands, L. C., & Keyserlingk, E. W. (2000). Informed proxy consent: Communication between pediatric surgeons and surrogates about surgery. Pediatrics, 105, 591–597. Laurent, C. (1991). Breaking bad news. Nursing Times, 87(12), 24–28. Lewis, M., Pearson, V., Corcoran-Perry, S., & Narayan, S. (1997). Decision making by elderly patients with cancer and their caregivers. Cancer Nursing, 20, 389–397. Loftin, L. P., & Beumer, C. (1998). Collaborative end-of-life decision making in end stage renal disease. American Nephrology Nurses’ Association Journal, 25, 615–617. Longhway, C. H. (1999). Preserving patient privacy. American Journal of Nursing, 99(10), 14. Lown, B. (1996). The lost art of healing. Boston: Houghton Mifflin. Maynard, D. W. (1989). Notes on the delivery and reception of diagnostic news regarding mental disabilities. In D. T. Helm, W. T. Anders, A. J. Meehan, & A. W. Rawls (Eds.), The interactional order: New directions in the study of social order (pp. 54–67). New York: Irvington. Maynard, D. W. (1991). Bearing bad news in clinical settings. In B. Dervin & M. J. Voigt (Eds.), Progress in communication sciences, (Vol. 10, pp. 143–172). Norwood, NJ: Ablex.

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McCue, J. D., & Cohen, L. M. (1999). Freud’s physician-assisted death. Archives of Internal Medicine, 159, 1521–1525. McGee, D. S., & Cegala, D. J. (1998). Patient communication skills training for improved communication competence in the primary care medical consultation. Journal of Applied Communication Research, 26, 412–430. McLauchlan, C. A. J. (1990). Handling distressed relatives and breaking bad news. British Medical Journal, 301, 1145–1149. Meisel, A., Jernigan, J. C., & Youngner, S. J. (1999). Prosecutors and end-of-life decision making. Archives of Internal Medicine, 159, 1089–1095. Miranda, J., & Brody, R. V. (1992). Communicating bad news. Western Journal of Medicine, 156, 83–85. Mitsuya, H. (1997). Telling the truth to cancer patients and patients with HIV-1 infection in Japan. Annals of the New York Academy of Sciences, 809, 279–289. Mystakidou, K. (1996). Disclosure of diagnostic information to cancer patients in Greece. Palliative Medicine, 10, 195–200. Nolan, M. T., & Bruder, M. (1997). Patients’ attitudes toward advance directives and end-of-life treatment decisions. Nursing Outlook, 45, 204–208. Novack, D. H., Volk, G., Drossman, D. A., & Lipkin, M. (1993). Medical interviewing and interpersonal skills teaching in US medical schools: Progress, problems, and promise. Journal of the American Medical Association, 269, 2101–2105. Ott, B. B. (1999). Advance directives: The emerging body of research. American Journal of Critical Care, 8, 514–519. Parrott, R., Duncan, V., & Duggan, A. (2000). Promoting full and honest disclosure during conversations with health care providers. In S. Petronio (Ed.), Balancing the secrets of private disclosures (pp. 137–148). Mahwah, NJ: Lawrence Erlbaum Associates. Pearse, P., & Cooper, C. (1993). Breaking bad news. Medical Journal of Australia, 158, 137. Pentz, R. D., Young, L. N., Amos, C. I., Hess, K. R., Wei, Q., & Anderlik, M. R. (1999). Informed consent for tissue research. Journal of the American Medical Association, 282, 1625. Perelman, C. H., & Tyteca, L. O. (1969). The new rhetoric: A treatise on argumentation. Notre Dame, IN: University of Notre Dame Press. Ptacek, J. T., & Eberhardt, T. L. (1996). Breaking bad news: A literature review. Journal of the American Medical Association, 276, 496–502. Quill, T. E. (1983). Partnerships in patient care: A contractual approach. Annals of Internal Medicine, 98, 228–234. Quill, T. E., & Townsend, P. (1991). Bad news: Delivery, dialogue, and dilemmas. Archives of Internal Medicine, 151, 463–468. Rabow, M. W., & McPhee, S. J. (1999). Beyond breaking bad news: How to help patients who suffer. Western Journal of Medicine, 171, 260–263. Rappaport, W., & Witzke, D. (1993). Education about death and dying during the clinical years of medical school. Surgery, 113, 163–165. Redelmeier, D. A., Rozin, P., & Kahneman, D. (1993). Understanding patients’ decisions: Cognitive and emotional perspectives. Journal of the American Medical Association, 270, 72–76. Roberts, L. W., Mines, J., Voss, C., Koinis, C., Mitchell, S., Obenshain, S. S., & McCarty, T. (1999). Assessing medical students’ competence in obtaining informed consent. American Journal of Surgery, 178, 351–354. Rosenfeld, L. B. (2000). Overview of the ways privacy, secrecy, and disclosure are balanced in today’s society. In S. Petronio (Ed.), Balancing the secrets of private disclosures (pp. 3–17). Mahwah, NJ: Lawrence Erlbaum Associates.

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9 Children, Older Adults, and Women: Impact on Provider-Patient Interaction Jon F. Nussbaum Penn State University

Sandra Ragan University of Oklahoma

Bryan Whaley University of San Francisco

This chapter introduces three underrepresented populations within health communication research. Both the health issues and the communication factors that are related to patients who are children, elderly, or women have not been the focus of much scholarly activity until quite recently. Many of the major health communication issues that are faced by these individuals on a daily basis are unique and can create complex interactive dilemmas for both the person who is seeking help and those professionals who are attempting to provide quality care. PROVIDER INTERACTIONS WITH PEDIATRIC PATIENTS

Effective provider-patient interaction, regardless of how defined, is formidable under the best of communicative conditions. This venture becomes particularly challenging when the patients are children. Pediatric patients’ lack of illness knowledge and life experiences as well as their ever-changing cognitive and linguistic development make message production tailored for illness interaction extremely ambitious. As arduous a process as interacting with children about illness appears to be, this discourse is claimed an essential component of their health-related experience. For instance, children’s understanding of illness and the medical setting is thought to be primary to their adherence to medical regimens and advice, self-management, and stress reduction (e.g., Burbach & Peterson, 1986; Eiser, 1985a,b,c; Eiser & Eiser, 1987; Potter & Roberts, 1984). Dorn (1984) posits the importance of this phenomenon: “how effectively one communicates can affect children’s reactions to procedures, compliance with therapy, and knowledge about health and illness. . . . How one

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approaches the child, the techniques used, and the language employed determine the degree of success or failure in these interactions” (p. 325). Adults’ interaction with children about illness is often characterized by the following strategy: “Adults often assume that if they tell a child something—explaining it calmly and rationally—the child will comprehend” (Steward & Regalbuto, 1975, p. 146). As evident, disparity exists between what children want or need and the messages providers create during interaction. At this juncture, theorizing and research concerning patient-provider interaction and concerning children have served more a heuristic than pragmatic function. Specifically, the existing contributions to this literature have been scant and often anecdotal, leaving providers in want of more specific guidelines for interaction. However, what has been offered regarding theory and strategies for message production is rich with potential (see Whaley, 2000, for detailed discussion of this literature). Theoretical Foundation(s) for Provider Interaction with Children

Stage theory (Bibace & Walsh, 1979, 1980, 1981; Piaget, 1930; Werner, 1948) has served as the conceptual base for research concerning interacting with children in health settings. Specifically, by understanding how children conceptualize disease and illness, researchers can estimate children’s comprehension of illness (Perrin & Perrin, 1983) and extract interaction strategies that are age- and developmentally appropriate (Goldman, WhitneySaltiel, Granger, & Rodin, 1991; Eiser, 1985a,b,c; Eiser & Eiser, 1987; Eiser, Patterson, & Tripp, 1984; see Eiser, 1985a,b,c, for reviews of sociological approach contributions to children’s concepts of illness). Bibace and Walsh (1981) suggested that children’s conceptualization of illness lies on a continuum of three levels—prelogical (ages 2 to 6 years), concrete-logical (ages 7 to 10 years), and formal-logical (ages 11 and older)—which differ developmentally and qualitatively; moreover, each level has two sublevels of explanations, rendering six types of explanations of illness by children (see also Eiser, 1985a,b,c, and Whaley, 2000, for more detailed discussions). The younger children at the prelogical stage conceptualize illness as phenomenism—sickness is caused by a force external to them, but they are incapable of explaining the mode by which the agent worked (“How do people get colds?” “From the sun.” “How does the sun give you a cold?” “It just does, that’s all”; Bibace & Walsh, 1981, p. 36). For the older children at the prelogical level, the governing explanation for sickness is contagion—the agent or source of illness is caused by entities that are in the immediate proximity to the child but not in actual contact (e.g., “How do people get colds?” “When someone else gets near them”; Bibace & Walsh, 1981, p. 36). Youngsters at the concrete-logical stage suggest that sickness occurs via contamination (transmission by physical contact—e.g., touching, rubbing; that is, “How do people get them [colds]?” “You’re outside without a hat and you start sneezing. Your head would get cold, the cold would touch it, and then it would go all over your body.”). (Bibace & Walsh, 1981, p. 36). More advanced illness causation within the concrete-logical stage is characterized by internalization. Here, children depict illness as an external agent that by obtaining bodily entry (e.g., inhaling, swallowing) inhabits the body internally (though they are vague on how illness affects them internally; Bibace & Walsh, 1981): How do people get colds? “In winter, they breathe in too much air into their nose, and it blocks up the nose.” How does this cause colds? “The bacteria gets in by breathing. Then the lungs get too soft [child exhales], and it goes to the nose.” How does it get better? “Hot fresh air, it gets in the nose and pushes the cold air back.” (Bibace & Walsh, 1981, p. 37)

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Finally, pediatric patients at the formal-logical stage conceptualize illness as a physiological phenomemon—external culprits affecting the functioning of internal bodily parts and/or organs in a “step by step internal sequence or events culminating in that illness” (Bibace & Walsh, 1981): How do people get colds? “They come from viruses, I guess. Other people have the virus, and it gets into your blood stream and it causes a cold.” (p. 37)

As children advance within the formal-logical level, they progress from physiological to psychophysiological explanations of illness, where psychological factors (i.e., thoughts, feelings) are perceived to contribute to physical demise: What is a heart attack? “It’s when your heart stops working right. Sometimes it’s pumping too slow or too fast.” How do people get a heart attack? “It can come from being all nerve-racked. You worry too much. The tension can affect your heart.” (Bibace & Walsh, 1981, p. 38)

Piagetian theory of development (e.g., Piaget, 1930) has dominated contemporary research concerning patient-provider interaction. Again, the rationale for the research concerning children’s conceptualizations of illness is, from this literature, to begin extrapolating message strategies for provider interactions with pediatric patients. However, the stage approach, its credence and subsequent application to yielding interaction strategies, has been subject to considerable question (Burbach & Peterson, 1986; Eiser, 1985a,b,c, 1988, 1989a,b; Eiser & Eiser, 1987; Eiser, Havermans, & Casas, 1993) and the efforts of Carey (1985) and Vygotsky (1962) have been suggested to be superior alternatives in advancing this literature (see Rushforth, 1999, for excellent history, discussion, and issues of debate concerning theorizing and researching about children’s conceptualization of illness). Interaction Strategies for Providers with Pediatric Patients

As mentioned, the impetus for understanding how children conceive and explain illness is to, theoretically, discern message strategies for interaction. This path of proposed achievement has fallen short of formable advances. For instance, as evident from the literature concerning children’s understanding of illness, researchers are continuing to grapple with theoretical and methodological issues to advance this domain of inquiry. Hence, attempting to discern patient-provider interaction strategies from the existing corpus of knowledge has been limited by previous theorizing (i.e., using stage approach), coupled with a relatively scant number of empirical investigations to discern strategies and effectiveness. However, the existing literature concerning interaction strategies for providers with children is informative theoretically, pragmatically, and heuristically. Interaction suggestions for providers can be categorized as (a) general strategies for interaction, (b) scripts, (c) use of tropes, and (d) vocabulary choice (detailed in Whaley, 2000). General Considerations of Pediatric-Provider Communication. Prior to interaction, providers are encouraged to consider the personality and experience, cognitive and mental level, religious, and cultural aspects of pediatric clients when considering message strategies of interaction (e.g., Bannard, 1987; Beales, Lennox Holt, Keen, & Mellor, 1983; Dorn, 1984; Eiser, 1985a,b,c; Elsberry & Sorensen, 1986). Whitt, Dysktra, &

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Taylor (1979), in addition, assert the importance of parental consultation in more accurately ascertaining these factors. Specific suggestions have been posited for providers’ assessment of pediatric clients’ degree of health understanding. For instance, providers could appraise children’s conception or representation of their medical condition by having these clients draw pictures or asking them to verbally depict what they believe is the nature of their illness (e.g., perceptions of what is making them sick and the organs involved; Bannard, 1987; Dorn, 1984). Eiser and colleagues (e.g., Eiser & Eiser, 1987; Eiser, Havermans, & Casas, 1993) asserted that determining a child’s experience and knowledge of his or her ailment, rather than age or Piagetian stage (e.g., Bannard, 1987), is a superior method of gauging the child’s level of illness understanding. In summary, the aforementioned message receiver variables are core to any goaloriented interaction and are especially useful to consider when providers design messages for the specific purposes of interacting with pediatric clients about health-related information. More contextual considerations are also essential to provider-pediatric interaction. Here, scripts appear to be of considerable interactive usefulness. Script/Schemata Use When Interacting. Research suggests that considering children’s health-related schemas and scripts of pediatric clients when interacting with children may prove helpful. For instance, Eiser, Eiser, and Lang (1989) found that when children were asked to depict what occurs when someone (a) doesn’t feel well, (b) goes to the doctor, (c) goes to the dentist, (d) goes to the hospital, and (e) has an operation, their scripts were generally in accord with the conventional succession of episodes or events (see Eiser et al., 1989 for age-related response differences). Further work concerning pediatric descriptions of objects and the sequencing of events during medical examinations and within hospitals reveals children’s knowledge is generally correct, events are sequenced accurately, and this increases with age (Eiser, 1989a,b; Eiser, Eiser, & Jones, 1990). Figurative Language Use When Interacting. Using comparisons (e.g., metaphors, analogies) is an intuitive and repeatedly employed message strategy for interacting with pediatric clients about health-related knowledge and events (e.g., Analogies Enhance Teaching Efforts, 1996; Bannard, 1987; Beales et al., 1983; Eiser, Eiser, & Hunt, 1986a, 1986b; Elsberry & Sorensen, 1986; Harmon & Hamby, 1989; Nichter & Nichter, 1986; Potter & Roberts, 1984; Whitt, et al., 1979). For example, Harmon and Hamby (1989) suggested something of the following when interacting about diabetes: In insulin-dependent diabetes mellitus (IDDM), the pancreas does not make insulin. Insulin is needed to carry glucose from the blood into the cells where it is used as energy. Since there is no insulin, the glucose stays in the blood and the cells begin to starve. One way to understand this is to think of the blood vessels as streets, the cells as houses, and the glucose as cars that travel on the street. Insulin acts as the driveways which allow the cars to leave the street and go into the garages. In IDDM, the cars stay on the street because there are no driveways (or insulin) to carry the glucose into the cell. (p. 413)

The suggestions concerning using figurative language to interact with children are dominated by anecdotal evidence. A limited number of empirical investigations have been conducted to examine the credence of these suggestions, with findings being tentative (e.g., Eiser et al., 1986b; Potter & Roberts, 1984; see Eiser et al., 1986a for essentials on developmental changes in children’s tropes to describe body parts). Whaley (1994), while

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supporting the use of figurative language when interacting with pediatric patients, noted that metaphors and analogies come in different forms with different pragmatic functions and suggested health providers to take heed of these complexities when interacting with children (see Eiser et al., 1986a, 1986b; Whaley, 1994, 2000, for the specific examples and concerns about using figurative language with pediatric clients). Vocabulary. Consideration of word choice is especially consequential when interacting about health-related material with children or when children are attendant. For instance, the literature commonly tells of the five-year-old girl who was told her knee was “inflamed,” which she understood as her joint was “in flames” beneath her skin. As such, she was frightened of the possibility that her leg would burn in its entirety (Beales et al., 1983). Hence, using such words as “dye,” “drawing” blood or fluid, or “burning” sugar (i.e., homonyms) should be done with caution and may require discussion for clarity of meaning when interacting with younger patients, especially (Bannard, 1987; Whitt et al., 1979). Interacting with Pediatric Patients—Conclusion

The current literature and research results concerning patient-provider interaction with children appears to be what Whitt et al. (1979) had in mind years ago when they suggested. In spite of commonplace admonitions to “speak at the child’s level” and “be accurate,” the clinical literature provides few illustrative examples for parents, physicians and pediatric nurses who seek to ameliorate children’s distorted perceptions of bodily disorders. This dearth of information is not entirely surprising. For all the literature on the clinical phenomenon, there is little theoretical structure to guide the task of providing explanations of illness which are both accurate and within the child’s cognitive capacity for understanding. (p. 331, italics added)

This continued state of affairs should by no means be a reflection on the scholars involved in this research. Investigating any communicative or social concern with children is an extremely challenging theoretical and methodical endeavor, in addition to the obvious taxing nature of the time, effort, and expense to conduct noteworthy studies. Those scholars who endure these factors and make laudable contributions (e.g., Eiser and colleagues) are to be commended and encouraged. Despite such efforts, however, there still exists a considerable amount of theorizing and investigations concerning patient-provider interaction strategies with children. Key to beginning systematic research concerning explaining illness to children is evaluating the literature (several scholars have) and performing the research. OLDER ADULTS

The prediction that those individuals aged 65 and over will constitute close to 22% of the population within the United States by the year 2030 (U.S. Senate special Committee on Aging, 1991) has heightened the awareness among scholars, practitioners, and “ordinary folks” that our society is becoming increasingly more mature. This aging of America has spawned many myths centered on the notion that the process of growing old cannot possibly be a positive experience and surely will be a time of great sadness,

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depression, and failing physical capacities. Quite to the contrary, social scientific research focusing on the physical as well as the psychological well-being of older adults has shown that the aging process can be accomplished with high levels of good health, with close and very satisfying personal relationships and can be a time of great personal fulfillment (Nussbaum, Pecchioni, Robinson, & Thompson, 2000). At the same time, it is quite apparent that older adults require access to a much larger number of health care services than do younger individuals and that the demographic trends point to an even greater demand of appropriate and effective health care services by these older adults in the coming years (Beisecker & Beisecker, 1996). For instance, Manton and Suzman (1992) speculated that the number of physician visits by older adults will double by 2040, with the greatest increase in physician visits coming from those over 75. Health communication scholars can no longer ignore the fact that a rather large percentage of health care is currently and will in the future be directed toward the special needs of an aging population. The Special Health Needs of Older Adults

Older adults suffer from more chronic or long-term illness than do younger adults or children and that percentage increases with age (Burham, 1974; Eisdorfer & Cohen, 1980; U.S. Census Bureau, 1996). In addition, as we age past 75, we are more likely to present several chronic conditions to the physician simultaneously. The most common of these chronic conditions include heart problems, arthritis and rheumatism, visual impairment, diabetes, hearing impairment, and hypertension (National Center for Health Statistics, 1990). Stahl and Feller (1990) reported that even though older adults do suffer from more chronic diseases than do younger adults, most older adults manage these diseases quite well and can continue to live quite well. Acute illnesses or short-term health problems such as broken bones and influenza are not more likely to occur within older adults. However, when an older adult does suffer from a broken bone or from the “flu,” it will take a significantly longer time to recover and there is a much greater chance of serious complications emerging from the acute illness than there are within a younger population (Nussbaum et al., 2000; Wilder, 1974a, 1974b). The mental health of older adults has received increased and rather intense scrutiny from both medical researchers and the popular press, in some part, because of the increase in reported cases of Alzheimer’s disease. This may reflect the media attention given to former President Ronald Regan and his struggle with Alzheimer’s. Nevertheless, Gatz, Kasl-Godley, and Karel (1996) reported that only about 1% of individuals between the ages of 60 and 70 suffer from some impairment in mental functioning, with this percentage increasing to about 25% for those 85 years of age and older. The occurrence of dementia or chronic brain disorders such as Alzheimer’s, as well as the severity of these mental disorders, does appear to increase with age. Notice that the percentage of older individuals suffering from impairment of their mental capabilities is nowhere near the 100% or even 50% level that would be the result if the myth of a perfect correlation between growing old and severe loss of mental capabilities were true. Depression has often been identified as the biggest mental health problem facing the elderly (Nussbaum et al., 2000). However, Holzer, Leaf, and Weissman (1985) reported that depression is no more common among noninstitutionalized older adults than among younger individuals. Gatz et al. (1996) reported that depression, anxiety disorders, and schizophrenia affect about 5% of the noninstitutionalized population of older adults and

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that this percentage is significantly smaller than the percentage of younger individuals suffering from the same mental health disorders. Much like the physical health problems affecting older adults, mental health problems in old age are rather complex and can lead to much more serious health problems that are often life threatening if not managed appropriately. Age-Related Cognitive Changes

Cognitive psychologists have studied the age-related changes in cognition and have linked these changes to our ability to communicate effectively (Nussbaum, Hummert, Williams, & Harwood, 1996). Susan Kemper and her colleagues (Kemper, 1992; Kemper, Keynette, Rash, O’Brien, & Sprott, 1989) have documented declines in working memory capacity and processing speed that affect syntactic and discourse processing abilities for older adults. In addition, older adults are plagued more than younger adults by problems in retrieving proper names (Burke, MacKay, Worthley, & Wade, 1991; Crook & West, 1990). It should be noted that age-related declines in language production, language processing, and name retrieval do not affect older adults equally. Wingfield, Wayland, and Stine (1992) suggested that, while it may be true that younger adults are generally better able to recall information than older adults, these same older adults appear to achieve a coherence in interpreting informationally rich statements in a way that is qualitatively different and possibly “better” than younger adults. Older adults may learn to use their limited processing abilities more efficiently than younger adults and thus minimize the physical cognitive declines associated with the aging process. In addition, when older adults are asked to produce narratives in an experimental condition, these narratives tend to be more interesting and clearer than narratives produced by younger subjects (Kemper et al., 1989). Presbycusis and Verbosity

Age-related hearing loss, presbycusis, has been studied quite extensively for the past three decades (Villaume, Brown, & Darling, 1994). Current conceptualizations of presbycusis focus not only on the decrease in hearing sensitivity experienced by older adults but also on the reduced ability to understand speech in terms of distinguishing among phonemes and ultimately meanings. It is a fact that older adults are more likely to have some degree of hearing impairment than younger individuals. Whereas surveys estimate a 5% rate of hearing impairment for young adults, older adults experience a hearing impairment rate of 25% up to 40% (Villaume et al., 1994). Presbycusic listeners experience greater hearing loss for high-frequency than for low-frequency tones. “Diminished sensitivity for these higher-pitched sounds has significant implications for how elderly persons may apprehend the content of speech by detecting, discriminating, and recognizing words, phrases, and sentences” (Villaume et al., 1984, p. 85). Gold, Andres, Arbuckle, and Schwartman (1988) conceptualized off-target verbosity to describe the talk of older adults who produce extreme amounts of irrelevant speech. Offtarget verbosity is characterized by not only an abundance of speech but also by a series of loosely associated verbalizations that stray more and more from the original topic. Gold, Arbuckle, and Andres (1994) reported that from 16% to 21% of the older population can be labeled as speakers with off-target verbosity. Villaume et al. (1994) speculated that the daily functioning of older adults with high levels of off-target verbosity can be

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negatively affected by the reactions of others who grow fatigued and become irritated by the disjoined talk. In addition, off-target verbosity may lead to conclusions that the older adult with off-target verbosity is not functioning competently. Institutionalization

At any one point in time, approximately 4% of those individuals aged 65 or older live in long-term care facilities (nursing homes) (Administration on Aging, 1998). Such a figure may be misleading since about 20% of all older adults will eventually die within a nursing home (Kastenbaum & Candy, 1973). The relocation of a frail older adult to a nursing home can be quite stressful. Nussbaum et al. (2000) have discussed the lack of participation by the older adult who is being relocated, the physical condition of the older adult, the lack of sufficient physical, psychological, and social care within the longterm care facility, the “interactive starvation” within the facility because of the rules that dominate the nursing home environment, and the support provided by the family as important factors associated with a successful transition to a long-term care facility. Beyond the social-psychological factors associated with residing within a nursing home, the United States remains one of only a few civilized countries that does not have a government-sponsored long-term care policy. The lack of this policy creates a financial burden for the older resident or the family who cares for the nursing home resident that almost certainty leads to impoverishment. Nussbaum (1981, 1983) investigated the communicative behavior of residents within nursing homes. He concluded that residents within nursing homes live in a world of near “interactive starvation” created by things such as the architecture of the facility, strict rules that forbid talk between staff and residents, the overuse of medication that “knocks out” residents who could communicate effectively, and conversational topics that concentrate upon disease or events within the nursing home. Stereotyping and Ageism

Robert Butler (1969) coined the term ageism to connote the wholesale discrimination against all elderly individuals. From language that refers to older adults as “geezers,” “goats,” “coots,” or “hags” to corporate policies that force early retirement due to myths about productivity and aging to misdiagnoses based upon mistaken assumptions of the human aging process, ageism can be a substantial barrier to successful aging. Mary Lee Hummert and her colleagues (Hummert, 1994; Hummert, Shaner, & Garska, 1995; Hummert & Nussbaum, 2000) have focused their research on identifying the stereotypes that individuals hold toward the elderly. The most commonly held negative stereotypes held by others toward older adults include older adults as severely impaired, despondent, shrewish/curmudgeonly, and reclusive. Positive stereotypes include goldenager, perfect grandparent, and John Wayne conservative. Both interactive context and the characteristics of the older adult will activate the stereotyping process. The Communication Predicament of Aging Model has been proposed by Ryan, Giles, Bartolucci, and Henwood (1986) to describe how younger adults are affected by ageist stereotypes during intergenerational interactions. In an attempt to accommodate the older interactant, the younger interactant may change his or her communicative behavior toward the older interactant in ways that may be quite detrimental to the self-concept of that older adult. Patronizing speech directed toward older residents of nursing homes is one form of communication behavior predicted by this model.

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Medicare and Managed Care

Medicare is an entitlement program for adults 65 years of age and older and some individuals who have disabilities. Medicare was established in the 1960s to provide quality, lowcost health care to all older adults. The Health Care Financing Administration administers Medicare and sets all reimbursement rates to hospitals as well as to health care providers. Since the early 1960s, Medicare operated, for the most part, as a fee-for-service plan. The federal government recognized that health care costs related to Medicare were growing much too fast. The Balanced Budget Act of 1997 established Medicare + Choice plans, the only HMO/managed care option for older adults (additional Managed care plans such as PPOs will soon be available as well). The Balanced Budget Act was passed in an attempt to cut federal reimbursements for Medicare in an effort to rein in out-of-control health care costs. Feder and Moon (1998) reported that as of 1998 more than six million older adults participate in managed care through the Medicare program. The greatest benefit within a managed care system can be for those patients (most notably the elderly) who are particularly vulnerable to chronic conditions, who rely on more than one provider, who can benefit from preventive services, and whose health status can use effective management. The promise of Medicare + Choice offers the potential for quality health care with reduced costs for both older adults and all tax payers. The promise of the Medicare system has in some part been realized. Older adults are living much longer, healthier lives in part because of Medicare. However, the cost overruns are too much for many politicians and tax payers to bear. Many politicians and economists (such as those in the Concord Coalition) are suggesting that our country can no longer afford Medicare and are seeking massive reforms that question why older adults should receive this entitlement. In addition, the shift from a fee-for-service operation toward managed care does not sit well with providers or some older adults with incomplete understandings of the managed care process. In addition, a recent trend to cancel managed care service to older adults within rural areas because of low reimbursement rates is causing great alarm. Finally, the oft-cited “problems” of managed care such as lack of health care provider choice, limited referrals, and very minimal interaction time with the physician are magnified with an older population. The Health Care Provider–Older Adult Relationship

Each of the issues discussed thus far within this section of the chapter concerning health communication and older adults ultimately affects the “special” relationship older adults have with their health care providers. From the numerous chronic conditions the older adult presents at the medical encounter to the issue of institutional and individual ageism to the Medicare system itself, the health provider–older adult relationship is quite unique. Excellent literature reviews of this interaction appear elsewhere (Haug & Ory, 1987; Beisecker & Thompson, 1995; Nussbaum et al., 2000), nevertheless, several important factors that play a significant role in effective communication within the health care provider–older adult relationship need to be discussed. First, as Beisecker and Thompson (1995) and Nussbaum et al. (2000) reported, older adults are typically satisfied with their medical encounters within the health care system. Factors such as whether older adults feel that their needs are being addressed by the physician, whether they have received sufficient emotional support from the medical staff, whether the physician or a nurse has discussed appropriate treatment, whether medical interactions are appropriately long and not rushed, and whether physicians interact utilizing

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appropriate immediacy behaviors and physically attend to the patient are all related to higher satisfaction levels with medical encounters among older adults. Second, an older patient’s compliance with a treatment regimen can be a significant problem (Haug & Ory, 1987). This is especially true given the multiple chronic conditions and the subsequent complex drug treatments older adults are expected to follow. Coe (1987) found that much nonadherence to treatments within the older population may be due to a lack of understanding of the proper instructions on what to do with the medications, rather than a willful noncompliance to appropriately follow the physicians directives. Beisecker and Thompson (1995) concluded that the research clearly supports the relationship between effective communication within the older patient–physician interaction and older patient adherence with medication regimens. Third, the interaction between older adults and their health care providers may be significantly different than similar interactions with younger adults. Older adults have been found to ask fewer questions, need longer interactions to ask important questions regarding their health, give less information to the health care provider, and are much less assertive than younger adults within a medical encounter. In addition, research by Adelman, Greene, and Charon (1991) found physicians to be more condescending, abrupt, and indifferent toward their older patients when compared to their younger patients. This pattern of difficult interactions between older adults and their younger physicians fits quite nicely into a general interactive difficulty found within intergenerational interactions (Williams & Nussbaum, 2000). Nussbaum et al. (2000), Williams and Nussbaum (2000), and others have placed some of the blame for these ineffective, intergenerational interactions onto both the ageist attitudes held by health care providers and the willingness to believe these negative attitudes and accept this less than appropriate behavior on the part of the older patients. Fourth, older adults are often accompanied by a family member or friend to the medical encounter. A physician who is expecting a dyadic medical encounter is now placed into a triadic encounter. The companion can significantly change the dynamic of the medical encounter. Often, the companion is more assertive than the older patient. The companion will ask more questions, will cause the medical encounter to last significantly longer, and will expect more information regarding the health of the older patient than the older patient normally seeks. Research by Labrecque, Blanchard, Ruckdeschel, and Blanchard (1991) and Glasser, Prohaska, and Roska (1992) indicated that physicians provide more information when a companion is present and that the companion can solicit a “better explanation” from the physician concerning the health status of the older patient. In addition, Morgan and Zhao (1993) reported that companions can help the older patient to comply with appropriate medical regimens. Finally, interdisciplinary care teams are quickly becoming the normal care providers for older adults who are in need of continuous care for extended periods of time (Nussbaum, Pecchioni, & Crowell, in press). These care teams are often led by a primary care physician, who may be trained in geriatric medicine, and made up of professionals such as social workers, nurses, nutritionists, physical and occupational therapists, psychologists, and a pharmacist. These interdisciplinary teams typically meet once every two weeks to discuss each older patient and to determine an appropriate plan for care. Efficient and effective meetings of the team are dependent upon communicative skills not often taught in these particular disciplines. In addition, family members and in some instances the patient are called into the team meetings to provide additional information or to help in the decision-making process. Once again, this setting can be very intimidating not only for the family members and the older patient, but also for many of the

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health professionals who are of lower status and may not feel free to voice an opposing opinion. Effective small group communication skills can be an essential ingredient within the process of effective delivery of health care within these interdisciplinary teams. WOMEN’S HEALTH COMMUNICATION

Dr. Richard M. Glass, in his foreword to Whaley’s recently edited volume Explaining Illness (2000), notes that “this book . . . concerns the complexities involved in communicating and understanding explanations for illness among different age groups, cultures, and individuals. These are issues of great importance for physicians and other health professionals and also for patients, which includes all of us” (p. xi). Whereas most of the recent discussions of gender differences in communication lead us to the conclusion that alleged, substantive behavioral differences between women and men have not been empirically validated (e.g., see Canary & Emmers-Sommer, 1997) and that women and men, regardless of John Gray’s popular notion, do not hail from different planets, there is nonetheless a need to discuss women patients as a special audience for health care communication and women doctors as unique professionals. The existence of at least three medical journals, Women and Health, Women’s Health Issues, and the Journal of the American Medical Women’s Association, in addition to several recent publications by health communication researchers (Gabbard-Alley, 1995, 2000; Beck, Ragan, & Du Pre, 1997; Parrott & Condit, 1996) attest to this need. It arises from two primary factors in addition to women’s unique reproductive health care needs: the historical treatment of women by the medical profession and the special challenges for women in health care interactions. Historical Treatment of Women by the Medical Profession

As the history of women has been fraught with inequality, so too has the history of women’s medical care. Numerous researchers have pointed to the problems women traditionally have faced in seeking medical care, problems ranging from the medicalization of natural reproductive processes, such as childbirth (and hence the performance of frequently unnecessary surgeries, i.e., hysterectomies and caesarean sections), to the overprescription of valium and other tranquilizing drugs for the alleged mental health problems of women (problems that historically have been dismissed by male physicians as women’s hysteria, even when legitimate physiological and psychological symptoms were present) to the exclusion of women from clinical trails (such that many recommendations for the treatment of heart disease, several cancers, and other illnesses can be made assuredly for male patients only, given that women were excluded from the research programs and clinical trials that led to these recommendations) (see, for example, Corea, 1977; Fisher, 1984, 1993, 1995; Todd, 1989, 1993; and West, 1984, 1993). While it is true that life expectancy for females is approximately 7 years longer than it is for men, women also experience more health problems than men and seek a physician’s care far more frequently. This is most likely due to sociological rather than to biological reasons, since women are socialized to find the “sick role” more socially acceptable than men do (Gabbard-Alley, 2000). But while women engage more frequently in health care interactions than do their male counterparts, these interactions may look different from men’s health care interactions; moreover, these differences can affect women’s health care outcomes in substantive ways.

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Women’s Health Care Interactions

In her recent reviews of health communication and gender, Gabbard-Alley (1995, 2000) points to several differences in the communication patterns of female and male patients and female and male physicians. While no research studies exist that have uncovered the effects of differential communication patterns on female and male patients’ health outcomes, it is possible that such patterns may yield important consequences for women’s and men’s health. Gabbard-Alley (1995, 2000) notes that there continues to be a concern about whether gender should even be considered as a variable in health communication research. Yet meta-analytic studies conducted by Hall and her colleagues (Hall, Roter, & Katz, 1988; Hall et al., 1990) discovered that gender was a significant variable for some behaviors in health care encounters. For example, male and female physicians give more information to female than to male patients (Hall et al., 1988, 1990). Female patients ask their physicians more questions and talk more than male patients (Wallen, Waitzkin, & Stoeckle, 1979; Waitzkin, 1984, 1985), presumably because women are more concerned with and more knowledgeable about health issues (Wallen et al., 1979; Coope & Metcalfe, 1979; Buller & Buller, 1987). At least two studies found that women patients receive more time, more explanations, and more nondiscrepant responses from their physicians than men do (Waitzkin, 1984, 1985). The preceding findings might suggest that women patients are advantaged over their male counterparts in health care interactions. Yet other researchers point out that although women ask more questions than men, health care providers tend to give shorter and less technical answers to women’s questions than to men’s (Wallen et al., 1979). Gabbard-Alley (1995) suggested that the greater information received by women might be a function of their more frequent requests for information, not the amount of information volunteered by physicians. In her most current review of the literature in gender and health communication, Gabbard-Alley (2000) pointed to a study (Bernzweig, Takayama, Phibbs, Lewis, & Pantell, 1997) that suggested that male pediatricians give more information to boys and female pediatricians give more information to girls; moreover, “male physicians engaged in the least amount of conversation with girls in substantive medical communication” (pp. 152–153). She also cites Meeuwesen, Schapp, and van der Staak (1991) who found that both male and female physicians are more attentive to male patients. Gabbard-Alley (1995) concluded: “Overall, these mixed findings show that although women spend more time involved in communication acts in health contexts, for whatever reasons, their concerns are taken less seriously than are those of men” (p. 39). Several other researchers concur with Gabbard-Alley that girls and women may be short shrifted in medical interaction, particularly those feminist scholars who, in their investigation of health care encounters between women patients and male physicians, note that these physicians trivialize or dismiss women’s health concerns in the micropolitics of interaction (e.g., Corea, 1977; Davis & Fisher, 1993; Fisher, 1986, 1991, 1993, 1995; Todd, 1989, 1993; Todd & Fisher, 1993). These scholars believe that male-female power imbalances in the macrostructure of our society get reflected and reified in such microstructures as health care interactions. For example, Todd’s (1989) analysis of communication interaction between women and their male physicians found that physicians uttered all of the orders and requests in health care encounters. Beck et al. (1997) noted the empirical support for more symmetrical interactions between female doctors and their patients than between male doctors and their’s (Smith Du Pre & Beck, 1996; West, 1984). Other studies suggest that nurse practitioners, generally female, may interact with their

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patients in less dominant, more equitable ways than male M.D.s (Beck & Ragan, 1995; Drass, 1988, Fisher, 1995; Ragan, Beck, & White, 1995). Differences in Communication Styles of Male and Female Physicians

In Gabbard-Alley’s (2000) review of the effects of gender on health care communication, she pointed to several notable differences in the communication styles of female and male health care providers: (1) female physicians spend more time with patients than their male counterparts and engage in more communication (Roter, Lipkin, & Korsgaard, 1991; Bernzweig et al., 1997); (2) female physicians give more statements of objective information than male M.D.s (Meeuwesen et al., 1991), communicate with more taskfocused exchanges, e.g., question asking and information giving (Roter et al., 1991), and ask more questions having biomedical content than male physicians (Hall, Irish, Roter, Ehrlich, & Miller, 1994); (3) female physicians use less technical language or jargon than males (Gabbard-Alley, 1995), while male physicians use more interpretations and advisements than females (such strategies being used to control the patient’s behavior by making judgments about the patient, labeling his or her behavior, and giving him or her advice, commands, and suggestions) (Meeuwesen et al., 1991); (4) female physicians spend more time in the discussion of family information or social matters (Bertakis, Helms, Callahan, Azari, & Robbins, 1995) and, in general, have more psychosocial content in their communication with patients than male physicians (Hall et al., 1990; Roter et al., 1991). In accordance with this last finding, Gabbard-Alley (2000) also reported that female physicians disclose more (Meeuwesen et al., 1991), make more use of partnership communication (Meeuwesen et al., 1991), use more facilitative responses to patients (Hall et al., 1994), and spend more time developing rapport with patients, as well as giving patients more information about the history and nature of the illness (Bernzweig et al., 1997). Overall, Gabbard-Alley (2000) concluded that both female physicians and female patients are more effective communicators than their male counterparts in health care interactions. Yet, according to Du Pre (2000), other research reports do not reveal marked differences in the ways that female and male physicians communicate with their patients. She noted in her review of physicians’ communication styles the following differences: women M.D.s display more interest in patients’ social and psychological worlds, possibly due to their training as primary caregivers, e.g., pediatricians, family practitioners, and so on (Roter et al., 1997; Novack et al., 1997); female M.D.s are more likely than their male colleagues to suggest preventive health screenings (Novack et al., 1997); and female medical students are more egalitarian than their male classmates (Crandall, Volk, & Loemker, 1993). Du Pre (2000) cautioned that “gender is only part of the story. . . . Medical socialization, professional constraints, and personal style may mitigate differences between male and female speech” (p. 184). Gabbard-Alley (2000) noted that the context of the health care interaction and the sociological gender rather than the biological sex of the health care provider are confounding variables that must be examined “before any strong general conclusions can be drawn concerning how the gender of the patient or physician affects the communication interaction in the medical visit” (p. 162). Thus, cultural expectations and gender–role stereotypes continue to shape our beliefs that there are significant differences in women’s and men’s communication behaviors in health care and in all contexts, despite equivocal empirical findings. Based on the research summaries above, challenges for women patients in health care encounters are possibly augmented when the provider is male, particularly if a woman

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has been socialized to believe that men are more powerful than women in the culture at large and that M.D.s are more powerful than their patients. If, in addition, women patients practice traditionally “feminine” behaviors, such as politeness, compliance, and nonassertiveness in their medical interactions with male physicians, they are even more unlikely to participate in the partnership model of health care advocated by several researchers as optimal (Thompson, 2000; Beck et al., 1997; Sharf & Street, 1997). As Beck et al. (1997) noted, “such interactional patterns [those comprised of traditionally feminine verbal and nonverbal behaviors] contribute to a dynamic where the patient relinquishes her status as an active participant and becomes a passive object of medical attention” (p. 21). Beck et al. (1997) noted further that some women’s proclivities to play an inactive and nonassertive role in their health care interactions (as well as some M.D.s’ sexist treatment of their women patients) have disadvantaged them in several key areas: they lack the medical information they need for good health, they do not take advantage of preventative health screenings, such as mammograms and pap smears, and they frequently have been misdiagnosed. Although more than one-half of U.S. women use their OB-GYNs as their primary physicians, apparently few of these M.D.s offer their patients basic counseling on such health issues as osteoporosis, physical abuse, and mental health (American College of Obstetricians and Gynecologists, 1993). With regard to preventive screenings, Lurie et al. (1993) discovered that less than one-half of surveyed internists and family practitioners practiced American Cancer Society standards in conducting pap smears and breast examinations; interestingly and alarmingly, doctors under 38 years old screened the least for these diseases. Women who are elderly, have lower incomes, and are non-Caucasian are particularly vulnerable in this respect; these women are the least likely to receive adequate health information and preventative screenings (Fox, Siu, & Stein, 1994; Landen & Lampert, 1992; National Institutes of Health, 1996). In this age of health consumerism, women patients are responsible for educating themselves about their bodies and the health concerns they uniquely face. Yet if a woman’s socialization encourages silence and compliance in the face of male authority figures, her being armed with health knowledge will not necessarily produce the additional health information and preventative screenings that she needs from her M.D. Women must empower themselves to assume a partnership role in their health care interactions, to actively, persistently ask for the exams and tests that an M.D. may be reluctant to perform or order. (The current practice of managed care makes this achievement even more difficult, as physicians are monetarily rewarded by some insurers’ contracts for NOT ordering what the health maintenance organizations deem as unnecessary tests.) Beck et al.’s (1997) recent book on women’s health communication suggests, through an examination of discourse in several contexts of women’s health care—a public university health facility, an Indian health clinic, a female family M.D.’s office, a Catholic hospital, and a privately owned, for-profit hospital—that patients can indeed demonstrate the speech behaviors that create partnership, that enable them to be coparticipants in the multiple goals of health care encounters: diagnosis, treatment, education, relationship. The premise of this book is that health care interactions, rather than being institutionally prescribed by traditional roles for patients and providers, are instead unique, emergent social constructions, shaped by the communicative activities of both caregiver and patient. Since provider and patient display and achieve their multiple goals for the health care encounter through their verbal and nonverbal communication, such communication behaviors can be learned and refined, both by health care practitioners and by patients.

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Conclusions

The historical treatment of women, both in health care and in other settings, as well as the unique challenges women face in health care interactions mandate a consideration of women patients as a special audience for health care providers. Yet both medical students and women patients must be better educated for their respective roles in health care encounters before a patient-centered, partnership model of health care can be achieved. In an age of medical consumerism, women must empower themselves not only to be knowledgeable about their health care but also to take interactive risks in their health care encounters: to question their M.D.s about recommended surgeries that might prove unnecessary, even when questions are discouraged; to ask their health care providers for the time needed to discuss their health concerns beyond the presenting symptom; to voice assertively their dissatisfaction when they believe their medical complaints are being trivialized; and, finally, to seek other health care providers’ care when current practitioners are unyielding in their authoritative, patronizing styles of interaction. Concomitantly, medical students and practicing M.D.s must be trained to adopt partnership communication patterns with their patients, particularly with their female patients. While female physicians are more likely to engage in this pattern of interaction with both their male and female patients, and while the larger numbers of female students now enrolling in medical school (42% of entering medical students were female in 1998, according to the American Medical Association) will eventually promote equity in the gender distribution of M.D.s, male doctors continue to be in the vast majority of medical practitioners: the AMA (1998) projects that whereas 33% of U.S. physicians will be female by the year 2010, only 19% were female in 1994. Although many male doctors practice patient-centered medicine and are well attuned to their female patients’ unique medical challenges, more and more women patients are seeking female M.D.s and special centers for women’s medical care. According to Dr. Justine Trott, president-elect of the American College of Women’s Health Physicians (a group of about 250 physicians nationwide), “Women’s health is not just about women, it is about viewing health and well-being from the perspective of women” (Zibart, 2000, p. 1). Trott critiques the current medical model for its promulgation of the myth that, since women’s and men’s physiologies are identical, save for their respective reproductive systems, women and men thus should present the same symptoms for the same diseases and respond to treatments in virtually the same manner. It has been only recently acknowledged, for example, that women present with markedly different symptoms than men in their experiencing of coronary artery disease. Whereas “common knowledge” has told us that a heart attack is signaled by excruciating chest pains and intense chest pressure, apparently many women experience myocardial infarction with far milder symptoms. “Unless physicians are trained to recognize these differences and respond to them, they are not adequately providing the health care women need and deserve,” says Trott (Zibart, p. 1). Thus, she is heading an effort to develop a medical school curriculum around women-specific physiology that will result in an independent specialization for “women’s health,” as we have done for pediatrics, geriatrics, and internal medicine. Whether a “women’s health” medical specialty is required for optimal health care for women, or whether both male and female physicians merely need to become more conscious of women’s unique physiology and psychology and women patients’ attendant needs for patient-centered health interactions, it is highly probable that the practice of

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health care in our future will attend more to women’s health needs than it has in the past. This, we trust, will promote better health care for both women and men. CONCLUSION

Children, older adults, and women are often confronted with a multitude of unique health care dilemmas. In many ways, these children, older adults, and women offer the most interesting, the most challenging, and the most frustrating of health care opportunities for providers. In many of the same ways, children, older adults, and women present health communication scholars with a complex yet fascinating context with which to study how the medical establishment attempts to communicate effectively in their quest for highquality care. As has been mentioned in the above text, while we do know that each of these populations of patients requires special attention because of its age, gender, or numerous physical, psychological, or social factors that are age- and gender-related, very little “special attention” has been given by clinician educators to modify the interactive behavior of health care professionals that specifically focuses on improving communication with patients who are children, older adults, or women. If nothing else is certain, it should be quite clear that a child does need communicative competencies on the part of the professional provider to help him or her better understand and cope with a serious illness. A woman does need the male physician to spend more time on basic preventive counseling and to better adapt to the traditionally less assertive nature of this women patient. The older adult does need the physician to understand the multiple chronic disorders that affect the him or her while simultaneously communicating competently with a companion. Health communication research is only beginning to isolate and locate the communicative circumstances and opportunities that unique populations of patients bring to the examining room. The quality of care provided to children, older adults, and women will be improved, at least to some extent, by future health communication researchers identifying how these populations demand more competent communication interactions and then suggesting how both patient and provider can enter into a more effective health care interaction. REFERENCES Adelman, R. D., Greene, M. G., & Charon, R. (1991). Issues in physician-elderly patient interaction. Ageing and Society, 2, 127–148. Administration on Aging. (1998). Profile of older americans 1998. [Online]. Available: http//www.aoa.dhhs.gov/aoa/stats/profile. American College of Obstetricians & Gynecologists. (1993, October 29). Poll shows women rely on OB-GYNs for primary care (news release). Washington, DC: Author. American Medical Association. (1998). [Online]. Available: http://www.AMA-ASSN.ORG/. Analogies enhance teaching efforts. (1996). Patient Education Management, 3, 143–144. Bannard, J. R. (1987). Children’s concepts of illness and bodily function: Implications for health service providers caring for children with diabetes. Patient Education and Counseling, 9, 275–281. Beales, J. G., Lennox Holt, P. J., Keen, J. H., & Mellor, V. P. (1983). Children with juvenile chronic arthritis: Their beliefs about their illness and therapy. Annals of the Rheumatic Diseases, 42, 481–486. Beck, C., & Ragan, S. L. (1995). The impact of relational activities on the accomplishment

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III Social and Community Health Issues Alicia M. Dorsey

As the breadth of chapters in the present volume attests, the field of health communication has expanded greatly over the past two to three decades. As the chapters in the previous sections demonstrate, although we have identified many important links between communication practices and health, there still exists a wealth of unanswered questions related to this complex relationship in traditional medical settings, such as health care facilities, or within the context of a health care provider–client interface. In addition, although consistent findings related to the role of mass media in influencing health behavior exist, there are also an infinite number of questions yet unanswered related to the role of health messages transmitted to a variety of target audiences through mass media channels or a host of new technologies, as outlined in the section following this one. These sections of the present volume certainly highlight the mainstays of the field of health communication. However, recent years have seen a broadening of contexts within which scholars investigate the inherent relationships between communication and health. Two such contexts are highlighted in the present section of this handbook. First, over the years we have seen a heightened level of activity focused on the community context in attempts to address “local” health and public health-related issues. There has been an emerging recognition, particularly within underserved and hard-to-reach areas, that perhaps the most hopeful health interventions are those planned and executed by communities themselves. The ultimate effectiveness of this process of coming together as a community to tackle specific health concerns—separating the symptoms of a problem from the actual sources of the problem, identifying strategies for addressing these key issues, and negotiating resources to support the efforts—clearly is predicated on the emergent communication practices within and throughout the community. This unique and vital context has only recently been a focus of extensive communication investigation. A second evolving context for health communication investigation involves a closer examination of the role of informal talk within the context of social relationships on our health and well-being. We have long recognized the power of social support. However,

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only in recent years has communication scholarship begun to attempt to examine and document the complexity and power of social contact in health and illness. The five chapters presented in this section explore these relatively new and certainly fruitful domains of investigation. They collectively examine the wide range of contexts within which both formal and informal communication practices influence the health of individuals and communities. The chapters also collectively challenge researchers to continue pursuing applied research in our efforts not only to better understand the role of communication in health, but also to identify specific strategies for improving the overall health of individuals in society. OVERVIEW OF THE CHAPTERS

The first three chapters within the unit explore the complex yet necessary act of engaging in community-based activities in efforts to promote health and healthy behaviors. In his chapter “The State of the Art and the State of the Science of Community Organizing,” James W. Dearing examines the gulf between the extant community-organizing literature and the emergent community-organizing practices. He highlights the importance of adopting a more holistic, social ecological approach to community change in both our examinations of problems facing communities as well as potential changes. Similarly, Clifford W. Scherer and Napoleon K. Juanillo explore both the theory and practice of community participation in efforts to understand and manage risk within community settings. This chapter provides both an overview of important aspects of community involvement as well as the evolution of risk assessment and risk communication. The third chapter examining community-based strategies for health communication highlights the importance of working with “marginalized” groups. Here Leigh Arden Ford and Gust A. Yep outline many of the differences between working in and working with communities in efforts to communicate about health with unique populations. Beyond the goals of providing an overview of present theory, research, and practice related to this area, this particular chapter strives to sensitize researchers and practitioners to the complexities of sociocultural, economic, and political contexts within which health communication efforts must be positioned. Each of these three chapters presents a strong case for the importance of actively engaging community members in efforts to promote health and healthy behaviors. They very clearly provide a realistic picture of the challenges of not only engaging in communitybased health communication research, but also in facilitating community-based action. The second context explored in the collection of chapters to follow is that of social relationships. Both chapters examine the role of informal or social interaction in the health and illness of individuals. Terrance L. Albrecht and Daena J. Goldsmith provide an overview of the prominent literature on social support and social networks and their impact specifically on individuals’ health and well-being. Finally, Rebecca J. Welch Cline provides a new look at the role of “everyday interpersonal communication” in health. This particular chapter uses social influence as a theoretical framework for exploring the link between everyday talk and health, specifically regarding HIV/AIDS.

10 The State of the Art and the State of the Science of Community Organizing James W. Dearing Ohio University

The practice of community organizing can change quickly. Practitioners react—sometimes instantly—when they perceive that some aspect of what they do could produce better results if modified. When people are not being persuaded, the appeal is altered. If no one is showing up, new points of contact are tried. If a program officer can be convinced, a different approach is tried. Good practitioners are masters of trial and error and experimentation. Their decisions are based on personal experience with the health problem, knowledge of the community in question, memory of previous social change initiatives, and advice from practitioner-colleagues. Occasionally, codified book knowledge from their formal training plays a part in determining strategies; more often, it does not (Dearing et al., 1996). For them, knowledge resides in the community. Community organizers are social change artists. The state of good practice is the state of the art. Research about community organizing as accumulated in scholarly journals and books changes slowly. The studies take a long time to conceptualize, fund, conduct, and publish. Then other scholars have to read the publications and use them to inform their own work. Researchers are trained to be skeptical and seek validation of concepts and relationships from multiple studies. Good researchers are masters of caution and are meticulous about variation. Their decisions are based on what has been tested before and carefully reasoned hunches about what should work and why. For many scholars, knowledge resides in the literature. The state of good research is the state of the science. The purpose of this chapter is to describe the state of the art and the state of the science of community organizing. I do this by focusing on what Coleman (1973) considered the major distinction among theories of change: Whether the locus of change is vested in the social conditions that give rise to a problem, or in the individuals who experience the problem.

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Most of the current scholarship about community organizing, the purposive stimulation of organizations and or of individuals in order to improve certain conditions experienced in a community, is concerned with (1) individual attitude and behavior change campaigns or (2) community empowerment through grassroots initiation and activity. Attitude and behavior change campaigns, the traditional province of communication campaigns, typically involve institutional sources of expertise in the form of external change agencies or local technical professionals who seek a degree of community sponsorship so that the subsequent effort can be labeled “community based” whether there is much authentic community involvement or not (Labonte, 1997). Most behavior change campaigns identify problems as the responsibility of individuals in a community and the solutions to those problems as existing elsewhere, with change experts, who guide campaign development. This type of community organizing is what Rothman (1970) termed social planning. Currently at least as dominant is scholarship about community and individual empowerment through grassroots organizing. This scholarship, termed by some as community building (Walter, 1997), is often normative in its appeal for scholars to take action in the name of community development. Grassroots organizing scholarship identifies the causes of problems at the level of institutions (for example, unresponsive local government administrators) and solutions at the level of individuals, specifically self-organizing community residents. This is analogous to what Rothman (1970) referred to as social action. So scholarship about community organizing resides in two distinct camps, with sharply divergent notions of what community organizing means. And this scholarship is not as far along the learning curve as we might like. According to Berkowitz (2000), writing in the Handbook of Community Psychology, this is even the case among community psychologists who have been in the forefront of much of the research about community organizing: Psychology does not have an established base of direct evidence from experimental or controlled field studies of community organization that informs us, with precision, as to what kinds of organizational attempts work best, and how. (Italics in the original) (p. 335)

Meanwhile, the state of the art—actual organizing—is rapidly moving elsewhere. Community change practitioners, including the deterministic efforts of those with the resources to fund homespun efforts at community development (chiefly private foundation decision makers), are increasingly turning to social ecology interventions. These attempts at community development, not represented in Rothman’s (1970) seminal typology of community organizing, identify both the causes and the solutions of community problems at the level of institutions and organizations (see Table 10.1). Individuals in communities often have important, meaningful roles in these initiatives, but this type of community organizing is not based in individual-level phenomena. Whereas scholars such as Abraham Wandersman, Robert Goodman, and Allan Cheadle (Wandersman, Goodman, & Butterfoss, 1997; Cheadle et al., 1994) are contributing to our collective knowledge of whether and why social ecology–based initiatives might work and just how we ought to measure them, there are large gaps in our understanding of social ecology initiatives. Opportunities abound for health communication scholars and practitioners to make important contributions to our collective knowledge about community organizing from a social ecology perspective.

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Locus of Problems and Solutions in Community Organizing The Solution Is . . . In Individuals

In Institutions

The Problem Is . . . In Individuals

Self-Help

Behavior Change Campaigns

In Institutions

Grassroots Activism

Social Ecology Interventions

Table adapted from Medved et al. (2001).

COMMUNITIES AND ORGANIZED SYSTEMS

A community is an informally organized set of loose associations among residents (McKnight, 1994). Based on intrinsic and shared interests, people gather in voluntary association (de Tocqueville, [1835] 1945). As citizens (a political term meaning “one who controls”) rather than clients (with the Greek root “one who is controlled”), residents are free to be creative, communicate together, and express feelings, subject to normative influences. This use of the term community is consistent with classical definitions in the community development literature that identify people, place, social interaction, and psychological identification as necessary elements of a community (Christenson & Robinson, 1989). Communities coexist with organized systems (such as local health care systems), the latter that function to control resources in order to produce standardized practices and outcomes.1 Organized systems depend upon consumers (i.e., clients) to buy and or use their products and services. For example, a local education system may include public and private schools, school districts and policy boards, state, county, and city jurisdictions that provide funding and maintain oversight of school curricula and performance, parentteacher organizations, and teacher unions as well as children and their parents. McKnight (1994) argued that when encroached upon by efficient, powerful organized systems, voluntary associations (our shared experience as community members) contract; pervasive organized systems can lead to unhealthy communities by replacing citizen consent with controlled consumers; rather than behaving as active citizens, residents behave passively as clients. This disequilibrium, the same condition that scholars, practitioners, and social change advocates have noted as a crisis of civil society (Putnam, 2000), is the targeted locus of change of so-called civil investing, community building, and comprehensive community initiatives, which seek to strengthen communities and their voluntary associations in order to keep powerful and efficient organized systems in check. Walsh (1997) refered to more than 50 initiatives sharing this approach. 1 These interorganizational systems are analogous to what Kaufman (1959) referred to as “development in the community” as opposed to “development of the community” (p. 8). Wilkinson (1991), a student of Kaufman’s, used the terms social field to describe organized systems such as the local education system and community field to refer to community associations. Such theorizing draws on Lewin’s (1951) concept of field theory, that an individual’s action is determined by the environmental forces surrounding him or her. Lewin derived his concept from physical properties of magnetic fields.

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COMMUNITY ORGANIZING

For many people, community organizing brings to mind images of the lone and reluctant crusader, a person with no particular technical skills who has been personally and irrevocably wronged by a powerful and shady organized interest. Many such David and Goliath images are grounded in experience. Activists, working in association with other like-minded individuals, form grassroots social movements that can force the reconsideration if not outright redress of social problems by making them public, political issues, moving from marginalized complaint to mainstream institutionalization (Gamson, 1992; McCarthy & Zald, 1977). Community organizing through grassroots social movements is not easy; such efforts often languish for years. But the steps necessary to create a successful grassroots social movement are fairly well-codified. More problematic and at least as prevalent is community organizing that involves organized interests (such as the U.S. National Cancer Institute) that are external to the community(ies) in question. External sponsorship raises a host of problems concerning citizen participation (Cheadle et al., 1997; Dearing, Larson, Randall, & Pope, 1998; Perlstadt, Jackson-Elmoore, Freddolino, & Sturdevant Reed, 1999). It is then that the adversarial process of community change that characterizes social movements is necessarily overlaid with the need to collaborate and negotiate as the interests of an external change agency are fitted, often poorly so, with those of local residents and organizations, some of whom support a change objective, others who do not (Payne, 1999; Selznick, 1949). External change agencies bring money and access to technical resources that communities cannot hope to amass themselves. Community members—organizations and individuals both—bring the promise of participation, local legitimization, and sustainability that external sponsors cannot hope to buy. Matching the interests, needs, and wants of external sponsors and community members increases the complexity and heightens expectations to the challenge of community organizing, especially for large-scale community initiatives that involve coordination and/or standardization across multiple sites, require extensive citizen learning to participate, and in which external sponsors presuppose genuine citizen interest (Medved, Morrison, Dearing, Larson, Cline, & Brummans, 2001). STATE-OF-THE-SCIENCE COMMUNITY ORGANIZING

Theorists of purposive community organizing have drawn heavily on the field’s practical history in social work in America. Rothman’s (1970) much cited typology distinguished among: (1) locality development, the building of group identity and community cohesion; (2) social planning, in which rational action is undertaken to address needs identified by technical experts; and (3) social action, to redress a problem but more fundamentally shift the balance of community power so that the problem would not again arise. Locality development was a collaborative response by community organizations; social planning, a top-down, usually government-led approach to the identification and remediation of community problems; and social action, a bottom-up, grassroots approach based in confrontation that exposed social injustice, such as filthy water, nonexistent sewer systems, and unpaved roads in minority neighborhoods. Practitioners and scholars delineate time-ordered steps for achieving changes. Bracht and Kingsbury (1990), for example, proposed the following stages and each stage’s key elements:

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1. Community analysis (consisting of defining the community, collecting data, assessing community capacity, assessing community barriers, assessing readiness for change, and synthesizing data and setting priorities); 2. Design and initiation (consisting of establishing a core planning group and selecting a local organizer/coordinator; choosing an organizational structure; identifying, selecting, and recruiting organization members; defining the organization’s mission and goals; clarifying roles and responsibilities of board members, staff, and volunteers; and providing training and recognition); 3. Implementation (generating broad citizen participation, developing a sequential work plan, and using comprehensive, integrated strategies); 4. Program maintenance-consolidation (integrating intervention activities into community networks, establishing a positive organizational culture, and disseminating results); 5. Dissemination-reassessment (updating the community analysis, assessing effectiveness of interventions/programs, charting future directions and modifications, and summarizing and disseminating results).

Other scholars identify similar steps. Wagenaar, Gehan, Jones-Webb, Toomey, & Forster (1999), in writing about community mobilization, listed seven: Community assessment, creation of a core leadership group, development of a plan of action, attraction of mass support, implementation of the action plan, organizational maintenance and change institutionalization, and evaluation of intervention and outcomes. Evolution in scholarly thinking regarding community organizing parallels what has occurred in the field of international development studies over the last 40 years. Whereas scholars initially saw a large role for more industrially developed countries and international aid and change agencies in furthering the development of less industrially developed countries, empirical studies of international development did not support modernization hypotheses (Mowlana & Wilson, 1990). The negative and unintended consequences of technologically led change (such as malnutrition due to the introduction of new rice strains and new processing techniques) led development scholars, especially those from less industrially developed countries, to conceptualize active citizen participation and individual control over life circumstances as the keys to development, regardless of whether a society or community “modernized” or not (Bordenave, 1976). Villagers could, for example, reject urban sprawl, snarled traffic, and air pollution, but still choose to eradicate schistosomiasis. An internal locus of control— within one’s community as well as within oneself—came to define what development should mean (Freire, 1990; Galtung, 1980). Like the field of international development, literature about community organization has now come to strongly emphasize self-help and self-determination as preferred routes to community organization. While some community organization researchers such as Bracht and Kingsbury (1990) and the mobilization perspective of scholars such as Wagenaar et al. (1999) integrate meaningful roles for community residents on the one hand and external change agencies and technical experts on the other, the field of community organization is now dominated by a more strident scholarly belief that change initiation, ownership of change efforts, and benefit as a result should be of and by community residents, to the exclusion of external change agencies and other technical experts (such as local epidemiologists or public health officials) unless the latter’s role is limited to that of listener, facilitator, and discussant (Pilisuk, McAllister, & Rothman, 1996).

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This resident-centric perspective of community development has been termed community building. A number of recent theorists of community organizing focus on the building of community from within. Their emphases on empowerment, feminist perspective, marginalized groups, and conflict-based social action to redistribute power within communities can be understood as reactions against models of community organization that centrally involve external change agencies and direction (as opposed to support) from trained specialists, as well as the inauthentic forming of “partnerships” between powerful change agencies and relatively disempowered communities (Labonte, 1997). Community building as an alternative to or a type of community organizing is roughly parallel to the progression of thinking in the field of international development, where the responsibility for change (i.e., those who must initiate and organize the change effort) in communities has moved from system and policy levels of society to the level of individual community members, while the objects of change (the practices or beliefs of the units targeted to change) have moved in just the opposite direction, from the individual level to the institutional level. Currently, it is difficult to find examples of public health interventions that do not emphasize the personal responsibility of individuals and/or the importance of community participation in intervention (Guttman, 2000). In summary, the state of the science of community organization and international development studies has largely moved from (a) institutional responses directed at changing individual behavior, as in traditional communication campaigns, to (b) individual organized responses directed at changing institutional behavior, as in grassroots social movements. STATE-OF-THE-ART COMMUNITY ORGANIZING

Practitioners and their sponsors (especially including program officers in private foundations) are experimenting with a systemic approach to community improvement that identifies the locus of both problems and of solutions at the level of institutions. Concerned by research suggesting a disintegration of the public sphere in communities (Bellah, Madsen, Sullivan, Swidler, & Tipton, 1985; Putnam, 2000), and inspired by cases of successful neighborhood renewal through the establishment of supportive social environments (Schorr, 1997), these state-of-the-art practitioners and their benefactors are testing a social ecology perspective as a basis for community improvement. Proponents of these initiatives seek shifts in interorganizational relations, social norms, and public and organizational policies (Mathews, 1997; Ridings, 1997) that, if successfully altered, may operate systemically to change the structure of a local system and/or of a local community so that its capacity to function effectively is increased and its network of social relations is improved, which may then support the achievement of substantive objectives such as better health (Baker et al., 1994). The Annie E. Casey Foundation provides a case in point. In 22 of America’s most troubled big city neighborhoods, Annie E. Casey is investing up to 500 million dollars over 10 years to strengthen the social infrastructure of neighborhoods so that children and their families have a better chance of intellectual, social, and economic prosperity (Sommerfeld, 1999). The program, Making Connections, takes a general rather than project-specific approach to neighborhood improvement. Many grant makers have concluded that piecemeal efforts supported by foundations in response to single-issue requests from grantees demonstrate little, if any, sustained improvement after grants end. After-school care, for example, is inextricably tied to issues of employment, single-parent families, K-12 school policy, and neighborhood opportunities for children. Funding a project that seeks to improve after-school care by only addressing one of these issues may achieve project objectives

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but not affect the problem of after-school care because all the other factors that contribute to kids arriving home to an empty apartment persist. Lasting behavior change is unlikely when the intervention in question does not address the social environment that sanctions risky behavior. Making Connections involves community activists, social service groups, religious institutions, employers, and families in the expansion of job opportunities, the reinforcement of neighborhood institutions, and a strengthening of social networks, so that participants and others will come to newly value their collective efficacy as members of neighborhoods. From a social ecological perspective, researchers have studied community coalition action (Goodman, Wandersman, Chinman, Imm, & Morrissey, 1996; Wandersman et al., 1996), public policy (Milio, 1988), institutional policy and routines (Wagenaar et al., 1999), and community and organizational indicators of normative conditions (Cheadle et al., 1994; Cheadle, Wagner, Koepsell, Kristal, & Patrick, 1992). The operative assumption of a social ecological perspective is that individual behavior is importantly determined by environmental opportunities and constraints, as well as individual perceptions of socially shared norms (Goodman et al., 1996; Kelly, 1966). Changes in social ecology can be recorded by collecting data about, for example, grocery store sales of low-fat foods, prevalence of graffiti, number of small business start-ups, number of community gardens, homicide and suicide rates, pedestrian traffic, drug use, and theft incidence (Cheadle et al., 1992; Gladwell, 2000). When a social ecology perspective drives the development of a change initiative, substantive change (such as better individual health) is not the primary objective. Rather, proponents seek to convene local community partnerships that in turn give rise to a variety of projects so that individuals and organizational decision makers in the community perceive broad-based public concern for a general issue-set. The emphasis of a social ecology health initiative is often on the supportive conditions that will enable progressive action by agencies and individuals to improve community and personal health. These supportive conditions are of two types: (1) a community’s capacity to collectively take action, and (2) social capital that exists between community members and organizations. Social ecology health initiatives typically seek to increase community capacity and improve social capital. COMMUNITY CAPACITY

Community capacity is the sum and interaction of several types of assets held within a community. Together, these assets represent a community’s capacity for betterment. Building one or more dimensions of community capacity, with an emphasis on systemic change, is the particular goal of social ecology initiatives. The results of a two-day symposium convened by the Centers for Disease Control and Prevention in 1995 (Goodman et al., 1998) identified dimensions of community capacity as citizen participation and leadership, skills, resources, social and interorganizational networks, sense of community, understanding of community history, community power, and community values. These dimensions, and hence the concept of community capacity, were meant to be inclusive of three other popular concepts in the published literature about community improvement: community competence, sense of community, and empowerment (Parker, Eng, Schulz, & Israel, 1999; Plas & Lewis, 1996). To this list of dimensions should be added collective efficacy, a group’s shared belief in its conjoint capabilities to organize and execute the courses of action required to produce given levels of attainments (Bandura, 1997). Collective efficacy is important to community

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performance in strengthening capacity assets because when people hold stronger beliefs about their abilities as a collective, they will be more likely to achieve collective desired outcomes. Efforts to improve community capacity typically involve community members who come together in some variant of a partnership, coalition, or alliance. The purpose of these groups is to share information, coordinate resources efficiently and make decisions (Sigmond, 1995), and implement projects, each of which is an attempt to improve some aspect of a broadly defined problem (such as community environmental quality). These community partnerships or coalitions act as decision-making bodies to prioritize problems, consider and propose strategies by which each project can best achieve goals and objectives, generate new resources, delegate responsibility, implement projects, assess progress, and sustain the progressive actions they have begun. Community partnerships are an especially open type of organization that exist to marshal resources and commitment, implement plans, and achieve goals (Wandersman et al., 1997). Successful completion of coalition or partnership tasks requires community stakeholders to know one another and communicate on a basis of shared trust and to be competent to carry out project activities. It is a community’s capacity to organize that is often most at issue in social ecology health initiatives. SOCIAL CAPITAL

The dimensions of community capacity that are most important for achieving systemic change in a community are citizen participation and leadership, resources, social and interorganizational networks, and community power. Collectively, these four dimensions of community capacity represent a community’s social capital. Social capital can be defined as resources embedded in a social structure that are accessed and or mobilized in purposive actions (Lin, 1999). A community’s social capital is both its network of relevant social relations as well as what is available through that network for the use of network actors. Availability of social capital is dependent on one’s position within a network; network structure both enables and constrains one’s opportunity to access and use resources. While social capital is often written about as a “public” good (Coleman, 1988), clearly some actors have differential access to more of it than others, based on who they are and who they know (Portes & Landolt, 1996). Social capital can be put to a range of productive uses, from good to bad. A community high in social capital can be a community that is insular, closed, and isolationist (Portes & Sensenbrenner, 1993). A network high in social capital can be a network that actively excludes others. Communities as a whole benefit the most when their networks are diverse, inclusive, flexible, horizontal (linking those of similar status or in similar structural positions), and vertical (linking those of different status or in different structural positions); tie together organizations; and span other communities (Flora, 1998). So the social capital goal for a community is not simply more of it—increased frequency of interorganizational interactions or increased trust in interorganizational relationships, for example—but rather improved social capital, by connecting certain segments of the community that had previously not had access to information and other sorts of resources. In communities, social capital can be operationalized as the informal and formal relationships that span people, organizations, and agencies, and what is available through them, such as obligations, expectations (i.e., norms), and trust that can come to characterize those relations (Coleman, 1988). Informal relational assets include the personal contacts who can be accessed through community members’ social networks, as well

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as the routinized but not institutionalized relationships between people in agencies and organizations. Formal relational assets include interagency agreements, memorandums of understanding between organizations, and contracts (Wall, Ferrazzi, & Schryer, 1998). The social capital accumulated through these relationships can be of two types: It can result from “reciprocity transactions,” when people do favors for others, and from “enforceable trust,” when people act in response to system or community norms that prescribe their action for the benefit of others (Frank & Yasumoto, 1998). Seen in terms of social capital, community problems, such as crime or teenage pregnancy, become problems of community disorganization. Organization—strengthened relationships and better use of existing resources—becomes the solution (Skogan, 1988). IMPLICATIONS FOR STATE-OF-THE-SCIENCE COMMUNITY ORGANIZING

Externally led initiatives that take a social ecology approach to strengthening social capital and increasing community capacity represent an innovation in community organizing. To health communication researchers, they present the following challenges: 1. Many of the difficulties of community participation in initiatives that involve an external change agency concern community stakeholders’ reactance toward the imposition of a rational planning model typically imposed by external sponsors who are interested in demonstrable rapid progress. For them, progress is defined as moving from one set of decisions or activities on to another so that prior decisions and activities are not revisited if at all possible. Axinn and Axinn (1997) proposed that the historical record of community development (as well as their own experience as development scholars and community-organizing practitioners) supports a cyclical model in which communities and other units of analysis modulate between conditions of underdevelopment, appropriate development, and overdevelopment. This type of recursive model of community change not only implies that decisions about change will be revisited, but also that decisions will be made anew, time and time again, as new community participants cycle into community decision-making processes and as changing environmental conditions bring new issues to the fore in communities. Such a perspective is an important corrective to models of community organizing that detail a progression of step-by-step organizing activities. Many community members do not accept strict linear notions of planned change, especially those members most prized by change sponsors (Medved et al., 2001). The high degree of rational planning that defines time-ordered modeling runs counter to the orientation of community members who are not professionally trained. While some community participants readily appreciate the familiar efficiency of linear thinking—the paid representatives of public health departments and private businesses—the infected, affected, and traditionally underrepresented participants in the collaborative planning coalitions often prefer to behave as if they are party to a long-running dialogue in which participants need to periodically reestablish their commitment, demonstrate trust, and renew social bonds, just as in other facets of life. That is, community participants to change initiatives tend to treat their involvement as a dynamic relationship rather than an institutional prerogative, even when institutional partners are involved. 2. The relationships that are at first structured and then that emerge linking external change agencies and communities together in the change process are as important to study as is what then happens in the communities where interventions are put into the field. Nearly all the literature about coalitions, partnerships, and collaboratives focus on the relations among community stakeholders as they begin to work collectively, or not (Kreuter, Lezin, & Young, 2000), at the

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expense of studying in any serious way interactions and evolving relations between external change agencies and communities, which, in many ways, is a broader overarching concern (Cheadle et al., 1997). It is only by studying communication at this intersystemic level that key issues of control, community ownership, implementation support and technical assistance, and sustainability and institutionalization can be better explained. 3. The social ecology perspective on community interventions requires health communication researchers to use mixed-method research designs that are far more complex in their conduct, analyses, and interpretations than are single-method studies. If one is to capture the effects, for example, of personal networks and reference groups upon individual decision making, as well as model the effects of changes in local public policies on private businesses that newly delimit the health behavior choices of individuals, a health communication researcher may need command of sociometric analysis, psychometric and media consumption survey research, and nonreactive archival-based community indicators in order to piece together a composite of data that could fully test the social ecology perspective. Multiple methods may produce data that converge; more commonly, the researcher must explain discrepancies between findings across methods, which adds explanatory power to any analysis but takes more time and care (Jick, 1979). The implication here is a need for either (1) scholars who are comfortable and competent with multiple, often maximally different methods, or (2) scholars ready and willing to work in teams that bring together different sorts of specialists. My experience studying a social ecology initiative suggests that the research process required is quite like mounting a legal case, in which many sources of evidence are accumulated for the purpose of supporting statements and recommendations. 4. The reconceptualization of community competencies from process, progress variables to outcome, output variables has dramatic implications for health communication research. This change deemphasizes the demonstrable achievement of improved health status of individuals (which most campaign designs do not include sufficient time to capture even if they do occur) in favor of generic, relational variables that measure a community’s ability to organize. Like impact analysis, this shift will raise the level of analysis from the individual and group to the interorganizational system and the community. This shift implies change in data sources and data types as well as level of analysis and will necessitate health communication researchers with different skill sets.

IMPLICATIONS FOR STATE-OF-THE-ART COMMUNITY ORGANIZING

How do systemically directed, social ecology interventions like comprehensive community initiatives affect the practice of community organizing? 1. External change agencies play a major role in the change process. Their presence sets in motion a whole range of strategies to interest, persuade, and involve community members in the change objective that are not necessary when a change is initiated from within a community. Undoubtably, this dynamic complicates the task of the organizer. When an external change agency is involved, health communication practitioners can be viewed with pessimism by community residents as well as by local organized interests who may be less than convinced of the change agency’s motivations. Thus the health communication practitioner’s role becomes a persuasive one in addition to serving as intermediary between the external funder and local stakeholders, and organizing local participation. 2. When community capacities become the focal desired change, the purpose of the initiative can easily escape the comprehension of many community residents or simply not be considered to be important. Health communication practitioners can find and recruit passionate spokespersons for a cause who can, by virtue of their belief, convince others to expend the energy necessary to move an initiative ahead. But spokespersons will more readily be found for substantive social

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problems experienced in a community (i.e., migrant farm worker health and safety) than for amorphous objectives such as heightened trust, social support, and extended and diversified interorganizational relations. Practitioners will find it essential to envelop community capacity interventions in substantive projects to which residents can easily relate. 3. Practitioners who operationalize social capital concepts in ways that are meaningful and useful to individuals will ease their tasks of organizing. Disaggregated from collectives to the level of individuals, social capital can be operationalized as social leverage and social support (de Souza Briggs, 1998). Social leverage consists of valuable information that one can use to, for example, get a new job or find out about new opportunities (Granovetter, 1973). Social support consists of emotional and other resources that trusted others possess and share with friends, such as listening and commiserating, encouragement, transportation, gifts, or loans, to cope (Espinoza, 1999). The more tangible the effects of improved capacities can be made to individuals, the greater success organizers will experience. 4. Health communication practitioners should begin their work with serious attention to the outcomes that external change agencies are ultimately most interested in: sustainability and institutionalization of initiative objectives. These outcomes are possible for both the community capacity functions of coalitions and partnerships (such as more inclusive interorganizational networking) as well as for the substantive health improvement projects to which partnerships give rise (such as mobile dental vans for low-income neighborhoods). Thus practitioners must reorient themselves from expecting to work mostly with audiences at risk of illness or in need of disease prevention toward working with and between agencies and organizations that operate programs for people at risk and in need.

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Kelly, J. G. (1966). Ecological constraints on mental health services. American Psychologist, 21, 535–539. Kreuter, M. W., Lezin, N. A., & Young, L. A. (2000). Evaluating community-based collaborative mechanisms: Implications for practitioners. Health Promotion Practice, 1, 49–63. Labonte, R. (1997). Community, community development, and the forming of authentic partnerships. In M. Minkler (Ed.), Community organizing & community building for health (pp. 88–102). New Brunswick, NJ: Rutgers University Press. Lewin, K. (1951). Field theory in social science: Selected theoretical papers. New York: Harper. Lin, N. (1999). Building a network theory of social capital. Connections, 22(1), 28–51. Mathews, D. (1997). Changing times in the foundation world. National Civic Review, 86, 275–280. McCarthy, J. D., & Zald, M. N. (1977). Resource mobilization and social movements: A partial theory. American Journal of Sociology, 82, 1212–1241. McKnight, J. L. (1994). Two tools for well-being: Health systems and communities. American Journal of Preventive Medicine, 10(3), 23–25. Medved, C. E., Morrison, K., Dearing, J. W., Larson, R. S., Cline, G., & Brummans, B. (2001). Paradox in community health improvement initiatives: Communication and collaboration in a managed care environment. Journal of Applied Communication Research, 29, 137– 152. Milio, N. (1988). Making healthy public policy; developing the science by learning the art: An ecological framework for policy studies. Health Promotion, 2, 263–274. Mowlana, H., & Wilson, L. J. (1990). The passing of modernity. New York: Longman. Parker, E. A., Eng, E., Schulz, A. J., & Israel, B. A. (1999). Evaluating community-based health programs that seek to increase community capacity. New Directions for Evaluation, 83, 37–54. Payne, C. A. (1999). The challenges of employing performance monitoring in public health community based efforts: A case study. Journal of Community Health, 24, 159–170. Perlstadt, H., Jackson-Elmoore, C., Freddolino, P. P., & Sturdevant Reed, C. (1999). Citizen participation in health planning: A case study of changing delivery systems. Research in Sociology of Health Care, 16, 75–98. Pilisuk, M., McAllister, J., & Rothman, J. (1996). Coming together for action: The challenge of contemporary grassroots organizing. Journal of Social Issues, 52, 15–37. Plas, J. M., & Lewis, S. E. (1996). Environmental factors and sense of community in a planned town. American Journal of Community Psychology, 24(1), 109–143. Portes, A., & Landolt, P. (1996). The downside of social capital. The American Prospect, May-June, X3-21, 94. Portes, A., & Sensenbrenner, J. (1993). Embeddedness and immigration: Notes on the social determinants of economic action. American Journal of Sociology, 98, 1320–1350. Putnam, R. D. (2000). Bowling alone: Civic disengagement in America. New York: Simon & Schuster. Ridings, D. S. (1997). Philanthropy in action: Building community. National Civic Review, 86, 281–286. Rothman, J. (1970). Three models of community organization practice. In F. M. Cox, J. L. Erlich, J. Rothman, & J. E. Tropman (Eds.), Strategies of community organization (pp. 20–36). Itasca, IL: Peacock. Schorr, L. B. (1997). Common purpose: Strengthening families and neighborhoods to rebuild America. New York: Anchor. Selznick, P. (1949). The TVA and the grassroots. Berkeley: University of California Press.

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11 The Continuing Challenge of Community Health Risk Management and Communication Clifford W. Scherer Cornell University

Napoleon K. Juanillo Jr. University of Illinois, Urbana-Champaign INTRODUCTION

Progress in understanding and treating human disease has advanced to remarkable levels in recent decades. Understanding the relationship between lifestyles and health, the biology of the human body, development of designer drugs, alternative intervention strategies, and the genetic codes related to predispositions of various diseases have progressed; and they continue to progress at breakneck speed. As these advances are being made, it would appear that the level of uncertainty should decline, that individuals, groups, and communities should have more specific information on which to base health decisions, making not only easier decisions, but also more precise decisions about health and health protective behaviors. Ironically, this is seldom the case. Advances in medicine and other health sciences as well as in risk-assessment techniques have not necessarily resulted in decreasing the uncertainties we face as we resolve issues and questions about health. Einsiedel and Thorne (1999), for example, described the case of BRCA1, a gene identified as related to an increased chance of breast cancer. Rather than increasing certainty, the discovery of this gene has actually decreased certainty by increasing the number of questions needing answers. For example, questions now need to be answered specifying conditions under which the genetic code increases the likelihood of a particular type of cancer for a specific individual. At the same time there is increased uncertainty about how to identify susceptible individuals. Whereas our scientific and medical knowledge about health and disease has increased, health professionals and communicators are still frustrated because individuals do not behave “rationally”; they ignore medical advice, smoke, consume unhealthy diets, practice unsafe sex, and become overly concerned about what are, from a risk-assessment

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perspective, minor risks. Individuals may worry about the risks of West Nile Virus with family or friends as they continue to smoke, consume high-fat foods, or ignore their doctor’s instructions. It can be argued that scientific advances have provided us with more sophisticated techniques of detecting and assessing hazards. The scientific paradox seems to hold true in that scientific progress has not only increased our capability to detect potential hazards, but it also uncovers previously unknown hazards. As our understanding of the world grows exponentially, we are likewise confronted with uncertainties that leave considerable space for conflicting interpretation. This almost daily barrage of uncertainties and the widespread media coverage they generate have led some of us to view ourselves as the victims rather than as partakers and beneficiaries of the advances in medical and health science (Slovic, Fischhoff, & Lichtenstein, 1980). It ought to be clear, however, that the speed by which science uncovers new health hazards is not to be blamed for our inability to cope with risk information. Clearly, a critical issue that ought to be addressed is not about slowing down the science. What is really at issue is whether we have sufficient space to understand and talk about the specific prisms through which both the scientists/experts and the public view risk. Many of the disputes as well as charges of “irrationality” and ‘overreaction’ emanate from the dearth of forums that allow those involved to have an understanding of what constitutes their definitions of risk. It would indeed be unfortunate if the benefits from the advances and investments in the medical and health sciences would be less than optimum on account of one seemingly plain factor: poor communication. More than two decades have passed since the explosion of studies on risk-communication. Despite continued work in designing effective risk-communication strategies, we have moved only slowly toward even a feeble level of success. As a field of research, “Risk communication has undergone its own evolution” (Fischhoff, 1995, p. 137). Evidently, like any other scientific endeavor, each stage of exploring the dimensions of communicating risk has been accompanied by more complex questions and problems. Fischhoff (1995, p. 138) summarized the patterns and trends in the development of risk communication studies as follows: Stage 1 concentrated on getting the risk assessment right. “All we have to do is to get the numbers right,” to be able to make decisions related to risk. Stage 2 focused on issues of telling the public what the numbers were and explaining how they were determined. Stage 3 assumed that the need was to explain to the public what was meant by the numbers. For example, Johnson and Slovic (1995) reported on agency efforts to discuss uncertainties in health risk assessments aimed at reducing citizens’ perceptions of risk and to increase agency credibility. Stage 4 focused on comparative risks, explaining to the public that they’ve accepted similar risks in the past. Comparisons were made, for example between the risk from contaminated water and the risk from eating peanut butter (Fessenden-Raden, Fitchen, & Heath, 1987). Other literature explained that “one factor that inhibits public understanding of risk messages is that people often cannot easily relate the low—say, 1 in 10,000—risk probabilities presented to their everyday experience . . . thus this difficulty can be overcome by quantitative comparisons between familiar risks and less familiar risks” (National Research Council [NRC], 1989, p. 172).

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Stage 5 was exemplified by efforts to show the public that the risk of a new technology, policy or practice was “a good deal for them,” that the risk from the new activity was lower than a common risk such as eating peanut butter, for example. Stage 6 was the beginning of efforts to respect the public. During this time efforts were focused on clarifying and understanding different interpretations of words and phrases, and in simplifying terminology used by risk practitioners when talking with the public (Jardine & Hrudey, 1997). Stage 7 began with efforts to move the public into a position as a legimitate partner in the decision making. And finally, Fischhoff noted, Stage 8 advocates all of the above.

While some of these stages appear to be extremely naive, it is important to note that risk communication emerged primarily from a scientific and technical perspective. Engineers and scientists were frustrated in their attempts to build nuclear power plants, dam rivers, or institute public health policies and were searching for a way to explain to policymakers and the public that the risks were acceptable. Judging from Fischhoff’s outline, however, one could detect the imperative to surpass traditional processes of disseminating information based on purely technical assessments of risk and to move on to a phase that emphasizes a more inclusive and holistic assessment of risk. This finds resonance in Tinker (1996), who observed in health communication programs, a “growing recognition among Public Health Service agencies of the need for communication methods that move beyond the ‘bean-counting’ of information dissemination to include a variety of theoretical models for assessing the influence of health risk communication on health behavior change” (p. 197). Leventhal, Kelly, and Leventhal (1999) noted, in the context of cancer control, that risk perceptions have only a weak relationship to prevention behaviors. In fact, a wide range of studies have found only very weak or, at best, moderately weak behavioral change as a result of change strategies. These studies range from child immunization, AIDS, breast cancer screening, smoking, and heart disease to West Nile Virus and food safety (see, for example, Aspinwall, 1999; Basen-Engquist & Parcel, 1992; Borzekowski, Flora, Feighery, & Schooler, 1999; Brown, 1991; Kelly, Zyzanski, & Alemagno, 1991; Orlandi, 1996; Strobino, Keane, Holt, Hughart, & Bernard, 1996). Other studies have added considerable depth to our understanding of how individuals perceive risk and how these perceptions influence health behaviors. Included are studies examining the patterns of how the media and journalists construct meaning (Friedman, Dunwoody, & Rogers, 1986; Nelkin, 1987), the social amplification of risk (Kasperson et al., 1988), and the far-ranging psychological studies that have helped us better understand individual cognitive processes related to risk perceptions, risk estimates, heuristics, and others (see, for example, Slovic, 1992). For the most part, however, risk perceptions and behaviors have been studied almost exclusively as individual cognitive mechanisms in which individuals collect and process information, form perceptions of risk, and behave as atomized units unconnected to a social system (Lee, 1998; Rothman & Kiviniemi, 1999; Scherer, 2000). Even where the social aspects are recognized, these linkages are generally regarded as influences such as perceived social norms or as simple sources of information, much as the mass media are recognized as sources. Psychological approaches utilizing the idea of social systems generally assume that direct communication from other individuals will influence a specific person but that individual cognitions are still central to the formation and maintenance of attitudes and behaviors (Bovasso, 1996). This approach

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has yielded valuable insights into a number of mechanisms such as heuristics, faults in probabilistic reasoning, and optimistic biases. Psychological studies emerged early in risk communication primarily because communicators found it hard to explain why various audiences reacted in what seemed to be irrational ways. Why, for example, would communities accept a risk of one in a thousand in one situation but would be unwilling to accept a probability of one in a million in a different situation? Historically, policies and actions related to community health were often decided between government and industry experts. Industry responsible for soil, water, or air pollution would negotiate with the government regulatory agency as to what was acceptable. In other cases the health care industry would negotiate with government agencies as to what could be done to respond to a health crisis whether it was the result of human activity or a natural disaster. Rather quickly, however, public concern and opposition to resulting policies, regulations, and procedures grew. It became clear that solving disagreements between regulators, industry, and the public was difficult at best. Risk communication emerged as a way to begin explaining these policies to the public, and risk assessment emerged as the science to explain the probability of scientific uncertainty (Ohanian et al., 1997; Otway, 1987). Early risk-communication efforts focused almost exclusively on strategies for communicating to the public. Such rules as “speak clearly and with compassion” emerged as a way of more clearly communicating from the science community to the public. Some early risk literature even emphasized the need to “sell the public the facts.” The public, it was argued, needs persuasion, rather than education (NRC, 1989, p. 283). As a field of study, however, risk communication is rooted in the foundations of democracy. It embraces the assumption that for the public good, science must engage in its tasks (such as the estimate of public harm or the likelihood of harm) with a recognition that the outcomes have policy and behavioral implications (NRC, 1989; Otway & Thomas, 1982). The National Research Council (1989) noted that “to remain democratic, a society must find ways to put specialized knowledge into the service of public choice and keep it from becoming the basis of power for an elite” (p. 15). The underlying problem is often defined as lack of public understanding of risk or the public’s perception of risk (often defined as faulty) with the concomitant challenge to risk communication of making the message clearer, more persuasive, and more motivating. However, many decisions are under the control of officials, generally nonspecialists who are answerable to the public. Thus the communication of risks evolved from a need by scientists and risk-assessment experts to reassure and demonstrate to public officials and policymakers, as well as the public, that the science pointed to rational health protective public policies or behaviors. Research discourses about risk communication show a confluence of lessons learned about individual responses to risk and a progression toward empirical investigation of what actually concerns groups and communities and why (Bennett, 1999). Risk-communication studies now look at the concept of “rationality” in a broader sense as they consider both scientific and lay perspectives on risk and how a more interactive process might contribute to better understanding of risk and a more acceptable and rational risk management plan. Only recently, however, has there been work on the involvement of individuals in group participation strategies involving risk issues. Even these strategies, however, make tenuous assumptions about how the involvement of a small number of individuals may influence perceptions of the larger community. Rowan (1996) concluded that risk communication is most successful when individuals are empowered as opposed to when they are manipulated or coerced. It is the process of empowerment that may be central to achieving

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change. Lewin (1948), for example, suggested that motivation for change must move beyond simple cognition. Individuals, he argued, do not change simply because they have more information. Change, Lewin suggested, occurs when social norms change through a shared learning experience. It is the same phenomenon noted by Talcott Parsons (1951), in his classic work, that behaviors do not occur singly and discretely, they are organized in systems. Going beyond the study of group influence on health decision making, there are studies that suggest wholesale public participation in shaping health policies and decisions as a key component of health decision making and management. This philosophical foundation presents a strong argument for community participation in health policy decision making. The remainder of this chapter focuses on exploring the philosophical foundations for community participation in health policy decisions. Particular attention is given to case studies that illustrate unique aspects of community decision making and risk management and help build a theoretical foundation for community health risk management and communication. MAPPING THE ORIGINS OF RISK COMMUNICATION: INTEGRATING THE HEALTH RISK ASSESSMENTS OF COMMUNITIES

Until recently there has been a strong fundamentalist reliance on science as both epistemological and institutional forms that subordinate other important reflexive domains (Welsh, 1995). As a consequence, responses to and understanding of health issues have been largely dependent on what the experts say. Thus, science and public policy have had a functional relationship for a considerable period. Regulatory decisions, based on data generated through scientific research, have indicated a relationship that relies on the competency and legitimacy of the scientific system as a producer of knowledge. Logical consistency has become a necessity, and science is seen as possessing the capability to make predictions with precision, scope, and accuracy, including prediction of the consequences of risk-management decisions and policies. Science, at least, draws upon an externally recognized set of claims to authority and understanding whereas nonscientific understandings are not bound by these claims (Brunner & Ascher, 1992; Eden, 1996; Plough & Krimsky, 1987). Hence, scientific analyses and results have been primordial in setting the agenda, defining the problem, shaping and evaluating solutions, and justifying the legitimacy of health policies. This particular view of putting risk assessment and management in the hands of experts is not without basis in political thought. Philosophers such as B. R. Berelson, John Stuart Mill, Jeremy Betham, and Walter Lippmann argued for limited citizen participation. They claimed that involving citizens in day-to-day government affairs could impede the ability of technical experts to base decisions on their professional judgment. In addition, they felt that public involvement was costly and time consuming and could exacerbate conflict (Koontz, 1999). Managing risk through risk communication, in this context, is simply defined as a process by which government regulators and industry disseminate technical risk information and judgments of risk acceptability. The success of risk communication hinges on the degree to which public knowledge reflects or matches the technical rationality of risk and the extent to which popular behavior and attitudes are in harmony with scientific-technical values and principles. In this context, the social and cultural dimensions of risk are judged to be of marginal concern. Unfortunately, the elevation of so-called technical rationality as indispensable to health policy decisions has also meant downgrading the values, beliefs, and opinions held by

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the public. It is not surprising, then, to see a number of risk-communication studies suggesting the need to upgrade the level of the public’s scientific literacy as an approach to bridging the divide between experts and the public. This approach relegates risk communication to a simplified process of giving information. Public inputs are not a crucial factor in the process. It is, as Kasperson (1986) put it, an agency-initiated process that has for its goals “correcting misperception,” “educating the public,” “reducing conflict,” “easing implementation,” or “increasing legitimacy” (p. 278). Participation in risk communication, in this context, is one of co-optation—a means for maximizing rationality, a catalyst for implementing health-risk-management decisions, and a means for changing public attitudes and behaviors to conform to what the experts have determined as desirable. Facilitating the process of arriving at acceptable policies to manage health risk relies, to a large extent, on how public perceptions of risk are understood and incorporated in the overall risk-assessment process. In the ongoing discourse about health risk assessment and management, two issues have become clear: (1) Individual and community concerns and ideas about risk are multidimensional, and (2) the task of incorporating these varied perspectives is complex, if not difficult. Public judgments about risk, as evidenced by risk-perception research utilizing the psychometric and cultural approaches, have shown that lay judgments do not correspond with those of experts who manage hazards based on their quantitative assessments of risk (Renn, 1998). Undoubtedly, the varied facets of risk perception have sparked numerous theoretical and methodological debates in determining the constitution of individual and public perceptions of risk. The evolution of studies and knowledge about public perception of risk, however, has also led to a growing appreciation of the critical role of psychosocial and cultural factors that influence the public’s understanding and assessment of, as well as responses to, health risks. In dispelling the conventional reductive-objective paradigm of science that aims at “objective” and “universal” truths as determined by scientists and experts (Schwab & Syme, 1997), these studies offer fresh insights into the challenges policymakers face in integrating lay assessments into health risk management and communication. Whether each of these perspectives can yield solid empirical predictions and data may not matter as much as the new track toward which they are steering the discourse on risk assessment, management, and communication. Notwithstanding the disagreements over methods and concepts in risk-perception discourse, there is still a strong basis for assuming that the public goes beyond science-based risk information in making decisions about their health. The need for good quantitative data on public risk perception should not preclude the imperative to understand the ways people think about and respond to risk. In the context of the transscientific considerations that the public uses to make judgments about health risks, this chapter argues that risk-management and -communication processes should now focus more on integrating these different types of perspectives. This chapter discusses the key concepts in participatory processes and the public forums that allow for the articulation of issues, concerns, and opinions of those affected by health risks. Retracing the Arguments for the Transscientific Nature of Risk

The first category of these studies has shown that individual interpretations of risk are influenced by a number of factors. Guided largely by the methods in psychometric approaches based on the pioneering work of Slovic, Fischhoff, and Lichtenstein in the mid-1970s, these studies have focused on measuring the individual’s intuitive perceptions of risks. Social Theories of Risk by Krimsky and Golding (1992) provides a thorough

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discussion and synopses of different theories of risk as well as paradigms of risk assessment. This section of the chapter only provides a brief review of the major arguments relating to the two dominant social perspectives on risk (see Krimsky and Golding [1992] for further elucidation on these topics). The psychometric paradigm was a broad strategy that used psychophysical scaling and multivariate analysis techniques to produce quantitative representations or “cognitive maps” of risk attitudes and perceptions (Slovic, 1987). Under this paradigm, it is argued that an individual’s assessments of risk are driven by such dimensions as “perceived dread,” “involuntariness,” “immediacy of effect,” “controllability,” and “catastrophic potential” (Marris, Langford, & O’Riordan, 1998; Marris, Langford, Saunderson, & O’Riordan, 1997). This line of study suggests that there is a belief that natural risks are generally more acceptable than manmade risks. Ball, Evans, and Bostrom (1998) noted that in a forum on polio vaccine policy, an advocate for alternative therapy argued that immunity acquired after natural infection is often preferable to aftereffects induced by the vaccine. For some parents, the vividness of some vaccination aftereffects like fever and fussiness in their infants is enough to cause hesitation in their acceptance of the benefits of vaccinations. Many dread paralytic polio and other types of serious adverse events that they believe are caused by immunization, notwithstanding scientific or clinical data that indicate either no evidence or insufficient evidence to establish causation. Furthermore, media’s attribution to the diphtheria, tetanus, and pertussis vaccine (DTwP) as the cause of deafness in a former Miss America has only amplified the fears and imaginability of the alleged risks associated with vaccination (Ball, Evans, & Bostrom, 1998). Progressing from the emphasis on cognitive psychology in examining individual risk perception, the second category of studies has focused on the underlying social and cultural values and contexts associated with risk perception (Rogers, 1997). The cultural paradigm, which originates from the cultural theory developed by Mary Douglas and Aaron Wildavsky (1982), argues that the societal arrangements and institutions predispose an individual’s view of risk. Thus, going back to the earlier example of vaccinations, although public health experts and doctors may emphasize the general effectiveness of vaccines in clinical and statistical terms, parents making decisions about vaccination may perceive risks in broader religious, cultural, and personal contexts (Ball, Evans, & Bostrom, 1998). The ways people think about risk have emerged from social and collective interactions, are based on cultural rationalizations, and are embedded in and are manifestations of shared ideology (Earle & Cvetkovich, 1997; Hiskes, 1998; Wildavsky, 1987). In other words, risk perceptions are not a sole byproduct of individual interpretations, but are also influenced by the predominant worldviews or cultural biases in which the individual participates or identifies with such as hierarchy, fatalism, individualism, and egalitarianism. Hierarchists work best in social environments where authority is maintained. Their capability to take risk depends on the presence of authority structures that support these risks. Egalitarians view risk taking as a collective endeavor that does not allow any one sector of the community to take on less of the risk than others. Individualists prefer self-regulation and are more willing to take risks. Fatalists view risk as external to society and as such individuals or communities are not agents who can determine potential hazards. Hence, an “act is culturally rational . . . if it supports one’s way of life” (Wildavsky, 1987, p. 6). It is therefore reasonable to assume that the public’s assessment of health risks, the human body, sexuality, time, life, suffering, death, and disease are not just private experiences. All have an intrinsic social dimension. The health conditions in which they take

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place are often determined as much by cultural practices as by biological and environmental factors. Smoking, for example, though it has been assessed to be highly addictive and deleterious to human health, was generally accepted as part of social life as recently as 25 years ago. Similarly, the high incidence of modern-day scourges like AIDS, cancer, and cardiovascular diseases can only be understood in the context of new lifestyles and diet (Nakajima & Mayor, 1996). Public risk assessment that is based on cultural or communal worldviews leads us to consider the community as a potential determinant of how people make decisions about health risks and impresses upon us the importance of community-based interventions in health programs. Perhaps one of the clearest examples of the relationship between community-based and community-supported interventions is apparent in homeland security issues. If community food and water systems are to remain secure, every member of each community must not only understand and support the idea, but also actively participate. This development of a community culture to focus on community health and safety policies is not new, as will be pointed out. Along with cultural worldviews, risk perception is also determined by other social dimensions such as trust, blame, and accountability (Marris, Langford, & O’Riordan, 1998; Slovic, 1996, 1992). Public acceptance of health risk assessment is contingent on the perception of competence, objectivity, fairness, consistency, and credibility that the public holds for the sources of risk information (Renn & Levine, 1991). Moreover, public acceptance hinges on the extent of trust that the public holds in a regulatory body or industry. It also depends on the public’s experience with how these institutions have handled risk events in the past. For example, mistrust of the medical system by some African Americans has been identified as a barrier to optimal health care and participation in clinical trials, thus the Clinton administration’s formal apology for the Tuskagee Syphilis Study (Ball, Evans, & Bostrom, 1998). Not surprisingly, increasing public mistrust about health claims reflects the overall decline in public trust in scientists and experts, government officials, and most other sources of authority (Greenberg & Williams, 1999). Accordingly, public trust in the opinions expressed by friends, nonexperts, and citizens groups, and even concerned celebrities, seems to be increasing. Data from surveys have shown that confidence in government and industry has diminished considerably during the past 30 years (Peters, Covello, & McCallum, 1997). Whether recent events and the resulting public increase in trust in government represent a short-term change or a long-term credibility gain cannot yet be assessed. However, it seems to stand to reason that unless government agencies restructure their ways of involving citizens in the decision-making process, the gains may be short term. Negotiating Health Risk Assessment: In Search of Workable Forums in the Public Sphere

The ongoing debate on how to define health risks and what constitutes appropriate and acceptable health-risk-management policies can be classified as a contention between two dominant and contrasting types of language: (1) the scientific-managerial language, and, (2) the pluralist or communitarian language (Williams & Matheny, 1995). The current impasse is largely due to the competition between these languages, each one claiming proprietorship in rationalizing and articulating the dynamics of health regulation. Using empirical data from risk-perception studies, advocates for lay participation in health risk assessment and management claim that the scientific-managerial language cannot stand on the assumption that its methods are neutral and, therefore, capable of

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forming an objective basis for health risk assessment and management. They argue that the definition of public interests and the search of optimal policies cannot be left in the hands of scientific or technical experts who focus on health risk assessment based on the accuracy of laboratory research, disease surveillance, and epidemiological studies. They disagree with the notion that absolute standards of rationality can be invoked to assess the response to risk or that a single definition of what counts as rational behavior is achievable (Hiskes, 1998). Risk, from this perspective, is the product of constant interaction, not an immutable characteristic of an inanimate physical system (Hiskes, 1998; Jasanoff, 1993). Thus, it cannot be assumed that science can yield value-free results and information that are totally inseparable from political and social realities as well as the inherent struggles and conflict within the scientific community itself. On the other hand, those who speak on behalf of scientific health risk assessment argue that the pluralist language has failed to consider basic technical or scientific facts, thus defeating its own goals of balancing contending interests, providing due process to all valid public concerns, and devising holistic risk management policies. The public, it has been noted, fail to hold significant stores of scientific and technical knowledge that are useful for making sound decisions on policies (Pierce, Steger, Steel, & Lovrich, 1992). Advocates for scientific health risk assessment contend that risk evaluation that is informed solely by individual interpretation and cultural viewpoints does not constitute a legitimate basis for risk management. Moreover, they consider as quixotic all communitarian efforts in risk assessment and risk management, whereby the perspectives of affected sectors, both scientific and lay, are considered and incorporated into policy. In a society that is increasingly confronted by technically complex policy questions, issues have been raised about the feasibility of nurturing the democratic ideal of public control (Pierce et al., 1992). The complexity of some health risk issues like the AIDS epidemic or cancer may not lend itself to protracted processes of consensus building, and even then the compromises made in such discussions may not yield the best results in the long term. Unfortunately, however, the discourse about health risk has not gone beyond the reiteration of “scientific” and “cultural” positions in risk assessment. So far this debate seems to have only resulted in a strengthening of intractable epistemological positions that points out the inadequacy of one perspective to legitimize risk assessment and management and the weaknesses of the dialogic process itself (Juanillo, 1994). However, there can be no resolution if the discourse continues to run along the disputes of “legitimacy.” In lieu of pursuing the debate as to which perspective can adequately capture the foundation for risk management policy, it might be more beneficial as an initial step to recognize the underlying assumptions about the epistemological moorings of each language. The stubbornness of the expert versus lay rivalry that mars talks about sound policies may be due to the lack of explicit acknowledgment and discussion of these epistemological differences in the first place (Williams & Matheny, 1995). Recognizing that not any one language works toward “objectivity” but instead only provides us with legitimate tools for competing in a political dialogue will give way toward constructing a paradigm of policymaking that goes beyond the usual dichotomies between scientific (objectivist) and lay (relativist) perspectives. The data and insights generated by the studies on risk perception now serve as a useful building block for rationalizing health interventions that involve issue stakeholders in devising programs that benefit them. It is important to note that the emergence of so-called relativist perspectives in health risk evaluation is not just an offshoot of empirical research in the social sciences. The notion of public involvement in health risk assessment is also very much a product of the times. Increased access to information facilitated by new information and communication

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technologies has also enhanced the public’s awareness of the issues that affect their daily lives. As Thomas (1995) argued, “broader access (to information) undermines the centralized control of information that was a principal basis for centralized decision making” (p. 6). Consequently, for some sectors of the public, increased awareness has led to demands for involvement in forming decisions on how to resolve these issues (Thomas, 1995). The NRC of the National Academy of Sciences, in a seminal report on risk (Stern & Fineberg, 1996), suggested the need to integrate scientific analysis with collective and public deliberation in considering issues pertaining to risk. In contrast to the usual “decide-announce-defend” approach often employed by governmental agencies, the NRC has recommended integrating science-based risk assessment with formal and informal processes for collectively considering or discussing issues by a range of interested and affected issue stakeholders (Chess, 2000; Stern & Fineberg, 1996). Indeed, Chess (2000) contended that the discourse has moved from whether there should be public participation in health risk assessment and management, toward the imperative of “getting the right participation” and “getting the participation right.” Thus, worth pursuing are more pragmatic questions such as: (1) What processes can guarantee all-inclusive and open discussion of important, multiple, and possibly irreconcilable perspectives as well as legitimate concerns? (2) What are the means by which affected individuals or interest groups are able to acquire, process, and apply relevant information so that they can effectively participate in the discussion of complex issues relating to health risk? Research literature has yielded a number of insights that have proven useful in addressing questions on the processes and forums for public participation. In terms of participatory forums, some popular options have included: (1) key contacts, (2) public meetings, (3) advisory committees or councils, (4) citizen surveys, (5) citizen contacts, (6) citizen juries, and (7) negotiation and mediation (Chess, 2000; Thomas, 1995). Other more intense mechanisms have been developed, but have not been applied to risk or health situations. (See, for example, Greenwood & Levin, 1998; Maestro-Scherer & Rich, 2001b; Rich, Scherer, Maestro-Scherer, & Michell-Nunn, 2002). It has been noted, however, that a specific mechanism for participation does not, in or by itself, determine the outcome of a participatory effort. The timing and context of the participatory activity might be a better predictor of the outcome. Successful outcomes are more likely to happen when there is public involvement and consultation in the early stages of decision making such as during problem identification. Participatory mechanisms must be used in consonance with providing time for more interaction, information exchange, deliberation, and the development of mutual understanding among the diverse parties involved. Moreover, other contextual factors such as the history of the issue, cultural representations of the human body and disease, the level of conflict involved, and the nature of the health-risk dispute may also influence the outcome of the participatory activity, and consequently, the public’s approach to action, prevention, and treatment (Chess, 2000; Nakajima & Mayor, 1996). Three Cases of Community Involvement in Health Risk Assessment and Management: Actualizing the Ideal

A number of health programs have gained significant successes by increasing public participation and involvement in health risk assessment and management. A commonly described example is Finland’s North Karelia project on heart disease prevention in the 1980s, which was initiated and supported by the community (Schwab & Syme, 1997). Citizens petitioned for the intervention upon learning that their coronary heart disease mortality rate was the highest in the world.

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Focus on Kids. Another example is “Focus on Kids,” an intervention and research project targeting low-income, urban, African American preadolescents and adolescents. The project is built on the foundations of community partnership with a community advisory board (Galbraith & Ricardo, 1996). With the long-term goal of reducing HIV risk behaviors, the Focus on Kids project formulated varying short-term goals depending on the needs expressed by the community and incorporated community and family values, social influences, decision making, and interaction skills to address issues of sexual behavior, substance use, and drug trafficking (Galbraith & Ricardo, 1996). Community inputs were fused with initial project plans as community residents became involved in the project as “community ethnographers” and consultants, members of the community advisory board, and a youth board, and participants in focus group discussions. Overall, community members helped in the identification and recruitment of youth to take part in the project as well as in ensuring that the interventions were relevant in terms of timing, language, and culture. Thus, by grounding the project in the cultural constructs of the community and engendering public participation in the design and delivery of health interventions, the project team was able to reach a large number of youth, especially those at risk, and produce significantly increased rates of condom use and condom-use intention among the target groups (Galbraith & Ricardo, 1996). The PACE Project. PACE (Preventing Agricultural Chemical Exposure Among North Carolina Farm workers), a participatory health project involving migrant and seasonal farm workers—a poor and medically underserved population—addresses health concerns surrounding occupational exposure to agricultural chemicals (Arcury, Austin, Quandt, & Saavedra, 1999). The project engages a variety of segments of the farmworker community through a number of interactions such as establishing full partnership with the North Carolina Farmworkers’ Project (NCFP), a small, grassroots farmworker organization, a project advisory committee, community forums, public presentations, and formative research. PACE’s partnership with NCFP has resulted in the production of more practical and culturally appropriate training packages on pesticide safety and the development of the components of intervention. NCFP has also become, in some instances, the presenters of the interventions to farmworkers. The advisory committee for PACE brings together members of the farm groups (farmers and farmworkers) and the services group (health care workers and Cooperative Extension Educators). Through this forum, farmworkers are able to express their concerns and interact with farmers and provide critical evaluation of the feasibility and cultural appropriateness of the intervention. Similarly, the community farmworker forums, project presentations, and formative data collection represent other mechanisms used to generate opportunities for consultation, exchange of opinions, and sharing of experiences with and beliefs about agricultural chemicals. For the PACE project, one significant outcome of these participatory forums is that it has helped to bring together scientific and community perspectives and concerns. Far from diluting science, the involvement of affected stakeholders in health risk assessment has evidently resulted in even better science. As Arcury et al. (1999) argued, the community-expert partnership leads researchers/experts to valuable information that would otherwise be unavailable for ensuring that the interventions may be fully responsive to community needs and concerns. In this kind of arrangement, interventions are tailored to meet communities on the communities’ own terms. Community Involvement in HIV/AIDS Prevention. Nothing could be more formidable in scope on matters of community participation in health risk management than the issue of HIV/AIDS in Orange County, California. As the fifth most populous

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county in the United States, Orange County is also marked by increasing ethnic diversity and a growing and diversified population affected by HIV/AIDS. Institutionalized community participation and inclusive planning strategies characterized the efforts of Orange County in fusing locally developed knowledge into public policy on HIV/AIDS education and prevention (Valdisseri, Aultman, & Curran, 1995 as cited by Takahashi & Smutny, 1998). These attempts acquired added significance in the light of the complexity of AIDS as a disease and the stigma that the general public attaches to HIV/AIDS. The inclusionary planning process became unique in that it centered not only on affected stakeholders (i.e., persons living with HIV/AIDS), but also on individuals and groups who were unwilling to participate in the prevention efforts for social and emotional reasons. It also addressed issues of trust and diverse cultural perspectives that were far more difficult to resolve than problems related to conventional information dissemination programs and provision of health services. Given this multidimensional dynamic, community planning in Orange County had to ensure that participants could “articulate for and have expertise in understanding and addressing the specific HIV prevention needs of the populations they represent” (Orange County HIV Prevention Planning Committee, 1995 as cited by Takahashi & Smutny, 1998). The outcome of this process was the creation of the HIV Prevention Planning Committee composed of 17 committee members representing the following groups: (1) gay, bisexual, and transgender individuals, (2) persons of color, (3) substance abusers, (4) youth, and (5) women. In addition, there were representatives from the County’s Health Care Agency, Department of Education, various community-based organizations providing HIV/AIDS services, and the University of California—Irvine. Expectedly there were problems attendant to any experimentation with collectivity. Some members found it difficult at first to break from their intrinsic ties to the populations they represented, hence, slowing down the process of establishing a collective identity. Cynicism continued to be expressed about the power and influence of members representing the municipal agencies, and that there was no equal power in decision making. Overall, however, the fusion of experts with community representatives in the county committee enabled Orange County to formulate a plan particularly in regard to resource allocation. It broke down bureaucratized procedures and engendered information exchange and networking. Advocacy on the part of community-based organizations gave way to a consensual technical process of following a set of criteria to select target populations for the program (Takahashi & Smutny, 1998). Community Involvement in Health Risk Management: Balancing Science, Institutional Trust, and Public Choice

The three cases mentioned in the preceding section illustrate the value of public or community involvement in health risk management. The need to put a premium on public involvement in the risk management process acquires added urgency in the context of the many health-related decisions and choices that modern societies have to make. Indeed, many of the new health risks faced today reflect the consequences of new human interventions in natural processes such as those involving food production and processing, transplants using animal organs, and biotechnology. Robert May (2001) contended that as a result of medical advances that have lengthened life expectancy, the public has also now regarded a longer and healthier life as a basic right and the paths to better health as a public choice. Ironically, with the vast opportunities that medical science has to offer, society has yet to keep pace by doing a better job of defining what kind of world it wants. Whereas

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science continues to assert its voice in terms of “factual clarification of possibilities and constraints” (May, 2001, p. 891), the answers to some of the other substantial questions concerning values and contexts will have to be debated via forums that can accommodate complexities and varied viewpoints. Whereas it is a valid concern for health experts that popular beliefs, biases, and opinions may sway policymakers into enacting a questionable regulation, similar concerns can be raised about the biases that are brought by health practitioners into health risk assessment. Ong (1998) noted that screening mammograms can detect breast cancer in some women but also place a large group of women at risk of harm from radiation exposure. He adds that “women who have false positive results are subjected to unnecessary tests and interventions, and may have substantial anxiety and psychological morbidity” (p. 1229). He suggested that public participation, in this context, is pivotal in ascertaining the cost-effectiveness and utility of medical diagnosis and treatment. Involving communities in the early stages of health risk assessment, management, and communication also works toward maintaining a balance between diverse perspectives on health. This concept becomes more meaningful as health is viewed as “a state of well-being and the capability to function in the face of changing circumstances” rather than just the absence of disease (Public Health Reports, 1997, p. 183). Based on a study by the Insitute of Medicine’s Division of Health Promotion and Disease Prevention, community-based coalitions can become vital players in promoting collaboration in order to achieve more broadly defined health improvement goals for the community. Specifically, such coalitions can help “provide broad assessments, set priorities, and create a more relevant community profile of local demographic and socio-economic characteristics, health status, and health risks.” Moreover, they can also conduct their own health monitoring and formulate the health indicators that are appropriate to the locality (Public Health Reports, 1997, p. 183). The concept of community participation in health risk management recognizes the interdependence of individuals and communities in solving health problems in a more holistic approach. Providing opportunities for community members to work together in community-based groups or in partnerships empowers them to make appropriate decisions on such questions as the safety of drinking water, how to choose treatment regimens for prostate and breast cancer, and enabling action to prevent disease and cancer (Ratzan, 1999). The concept of community participation in health risk decision making and management is not free from the tension that accompanies democratic governance. The tug-of-war between the beliefs and principles of the technical experts and those of the public is to be expected. However, such tension, if seen from a participatory framework, is more productive in terms of the quality and sustainability of the decisions and actions that result from consultation and negotiation. This is mainly because community participation affirms the basic democratic and political ethic and vision as espoused by Thomas Jefferson. Jefferson’s vision places premium on local jurisdictions with active citizen involvement in all aspects of governance, such that “any citizen can attend, when called on, and act in person” (Mason, 1956, p. 372; Koontz, 1999, p. 442). Furthermore, citizen involvement increases government accountability. Evidently, there is no one-size-fits-all community involvement technique that can satisfy all affected stakeholders and perhaps it is best that there is no single modality of community participation. As a process that is essentially interactive, it does not adhere to a specific formula in order to arrive at the end result. As Plein, Green, and Williams (1998) observed, such a process will have “different starting points and different paths for different participating elements” (p. 516). Indeed, the “nuts-and-bolts of co-partnerships”

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(Pritikin, 1998, p. 51) pose difficult questions. As the Orange County community planning experience on HIV/AIDS indicates, community participation can be problematical and may continue to raise questions, if not cynicism (Takahashi & Smutny, 1998). On one hand, while community participation has engendered a collaborative atmosphere among affected individuals and community groups in Orange County, there are issues about participation as serving to legitimize existing institutional structures and practices (Takahashi & Smutny, 1998). Issues such as these call for examining further the various participation tools and processes and how they function in terms of providing a sphere for equitable discourse about health risks and the management of risks. Community involvement takes many forms and the range of techniques to enhance community participation in health services increases as innovations continue to grow. Even as there have been attempts to characterize forms of involvement or participation, there is still no rigorously or generally accepted classification scheme to efficiently categorize the numerous participative approaches and techniques that are currently practiced (Chess, 2000). Community involvement as a process of arriving at communal decisions on risk management is a social and organic process running through a continuum that can be characterized as passive to active, contractual to collegiate, token participation to empowerment (Arcury et al., 1999; Tong & Lu, 1999). As Tong and Lu (1999) further qualify, the process would depend on such factors as how the agency uses the form of participation, the organizational and administrative context, the issues and individuals involved, levels of knowledge, local perceptions and beliefs, as well as issues involving leadership, costs of interventions, degree of collaboration, and so on. What is important is not to lose sight of the end goal, which is to provide an arena for participants to gain insights, reflect on the issues, and provide better informed recommendations or decisions. This notion of a more flexible arena for community involvement or participation is what the proponents of Healthy Communities have qualified as a “safe civic space” for productive and meaningful deliberation rather than engaging stakeholders in issue-specific debates. This space for deliberation allows stakeholders to view community challenges holistically, focus on root causes, create norms of shared health values and culture, encourage beneficial approaches, and form policies that reflect shared values and norms (O’Connor & Gates, 2000). Thus, community involvement in health risk management will do well to utilize a combination of interactive techniques to suitably engage different types of stakeholders. At the core of these activities is the conscious attempt to break down barriers between the so-called experts/scientists and those members of the community who need to decide what policies are best suited to manage health risks locally. In the long term, these multiinteractions provide involved and affected parties a better appreciation of the complexities of a health problem and the entangled social dynamics accompanying problem resolution. Community involvement does not guarantee reduced tensions between community-based stakeholders and agency-based technical experts. Neither should community participation be construed as a means to overthrow or downgrade the contributions of science as a way of knowing about risk. Some of the strongest arguments for community participation come from Greenwood and Levin (1998) who noted that involvement, control, and capacity building are accomplished through a self-informing generation of systematic and organized knowledge. In doing so, they noted that the method aims to increase the ability of the involved community to more effectively control their own destinies and to continue improving their capacity to do so (Greenwood & Levin, 1998). The approach this builds on suggests that those who will be most affected by change should be intimately involved in determining the course

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and substance of change. Maestro-Scherer and Rich (2001) noted that another outcome that must not be trivialized is the impact on group members of “discovering” new ways of understanding. This self-discovery of information may be one of the more powerful motivating influences on behavior, but has been largely neglected by researchers, especially in the health and risk fields. Community participation should be seen as a means of veering away from the polarizing dichotomies of knowing about risk (i.e., “objective risks” and “subjective” risks), in order to move toward a more inclusive and integral consideration of risk viewpoints. Carefully planned community involvement activities may help all stakeholders reduce conflicting perspectives and facilitate the formation of a common resolution for a health problem. Employing community involvement mechanisms in risk assessment and risk management enables the affected stakeholders to take responsibility for the quality of their participation, the ideas they share, and the decisions they eventually make for their own health and for the community. Whereas practical considerations prevent all who will be impacted from participating, it seems reasonable to assume that a full range of perspectives of those affected must be represented (Rich & Maestro-Scherer, 2001a). In addition to issues of inclusion, there is a wide range of other unstudied challenges to participation strategies. Well-designed and -implemented participation strategies are expensive, time consuming, and complex. As a result, most participation activities become “one-time” events, and questions of sustainability are ignored. Other strategies result in questions of exploitation of participants or are used to avoid conflict. In other cases, participation is seen as threatening on behalf of one or more parties and is regarded as a means of power shifting (Rich & Maestro-Scherer, 2001a). All of these issues are significant to the future of participation and largely remain unexplored by researchers. Going beyond these affirmations of the potential benefits of community participation in health risk management and communication, it is important to remember that, at the end of the day, evidence is needed to show what works for and what mitigates against attaining the goal of inclusion and improved health behaviors. REFERENCES Arcury, T., Austin, C., Quandt, S., & Saavedra, R. (1999). Enhancing community participation in intervention research: Farm workers and agricultural chemicals in North Carolina. Health Education and Behavior, 26, 563–578. Aspinwall, L. (1999). Persuasion for the purpose of cancer risk reduction: Understanding responses to risk communication. Journal of the National Cancer Institute Monographs, 15, 88–93. Ball, L., Evans, G., & Bostrom, A. (1998). Risky business: Challenges in vaccine risk communication. Pediatrics, 101, 453–458. Basen-Engquist, K., & Parcel, G. (1992). Attitudes, norms and self-efficacy: A model of adolescents’ HIV-related sexual risk behavior. Health Education Quarterly, 19, 263–277. Bennett, P. (1999). Understanding responses to risk: Some basic findings. In P. Bennett and K. Calman (Eds.), Risk communication and public health (pp. 4–19). New York: Oxford University Press. Borzekowski, D., Flora, J., Feighery, E., & Schooler, C. (1999). The perceived influence of cigarette advertisements and smoking susceptibility among seventh graders. Journal of Health Communication, 4, 105–118. Bovasso, G. (1996). A network analysis of social contagion processes in an organizational intervention. Human Relations, 49, 1419–1435.

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Brown, W. (1991). An AIDS prevention campaign. American Behavioral Scientist, 34, 666– 678. Brunner, R. D., & Ascher, W. (1992). Science and social responsibility. Policy Sciences, 25, 295–331. Chess, C. (2000). Improving public participation in solving environmental health problems. Journal of Environmental Health, 63, 24–27. Douglas, M., & Wildavsky, A. (1982). Risk and culture. Berkeley: University of California Press. Earle, T., & Cvetkovich, G. (1997). Culture, cosmopolitanism, and risk management. Risk Analysis, 17, 55–65. Eden, S. (1996). Public participation in environmental policy: Considering scientific, counterscientific, and non-scientific contributions. Public Understanding of Science, 5, 183–204. Einsiedel, E., & Thorne, B. (1999). Public responses to uncertainty. In S. Friedman, S. Dunwoody, & C. Rogers (Eds.), Communicating uncertainty (pp. 43–57). Mahwah, NJ: Lawrence Erlbaum Associates. Fessenden-Raden, J., Fitchen, J. M., & Heath, J. S. (1987). Providing risk information in communities: Factors influencing what is heard and accepted. Science, Technology and Human Values, 12, 94–101. Fischhoff, B. (1995). Risk perception and communication unplugged: Twenty years of process. Risk Analysis, 15, 137–145. Friedman, S., Dunwoody, S., & Rogers, C. (Eds.). (1986). Scientists and journalists. New York: The Free Press. Galbraith, J., & Ricardo, I. (1996). Challenges and rewards of involving community in research: An overview of the “Focus in Kids” HIV risk reduction program. Health Education Quarterly, 23, 383–394. Greenberg, M., & Williams, B. (1999). Geographical dimensions and correlates of trust. Risk Analysis, 19, 159–169. Greenwood, D. J., & Levin, M. (1998). Introduction to action research: Social research for social change. Thousand Oaks, CA: Sage. Hiskes, R. (1998). Hazardous liaisons: Risk, power, and politics in the liberal state. Policy Studies Journal, 26, 257–273. Jardine, C., & Hrudey, S. (1997). Mixed messages in risk communication. Risk Analysis, 17, 489–497. Jasanoff, S. (1993). Bridging the two cultures of risk analysis. Risk Analysis, 13, 123–128. Johnson, B., & Slovic, P. (1995). Presenting uncertainty in health risk assessment: Initial studies of its effects on risk perception and trust. Risk Analysis, 15, 485–494. Juanillo, N. K. (1994). Recasting risk and scientific discourse: Dialectical message designs on food safety issues. (Doctoral dissertation, Cornell University, 1994). Archives Thesis, 1994 J917. Kasperson, R. E. (1986). Six propositions on public participation and their relevance for risk communication. Risk Analysis, 6, 275–281. Kasperson, R., Renn, O., Slovic, P., Brown, H., Emel, J., Goble, R., Kasperson, J., & Ratick, S. (1988). The social amplification of risk: A conceptual framework. Risk Analysis, 8, 177–187. Kelly, R., Zyzanski, S., & Alemagno, S. (1991). Prediction of motivation and behavior change following health promotion: Role of health beliefs, social support, and self-efficacy. Social Science Medicine, 32, 311–320. Koontz, T. (1999). Citizen participation: Conflicting interests in state and national agency policy making. The Social Science Journal, 36, 441–458.

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12 Working along the Margins: Developing Community-Based Strategies for Communicating about Health with Marginalized Groups Leigh Arden Ford Western Michigan University

Gust A. Yep San Francisco State University The complexities of health-related communication research and practice in community and with community are the foci of this chapter. As scholars and members of multiple communities, some marginalized and some not, we are committed to the ideology and principles of community-based health communication scholarship that we will describe in these pages. Because of these commitments, we begin with a narrative describing a community-based health communication strategy that fell short of these commitments. Our purpose in this narrative of failure is not to discourage community-based collaborative scholarship. Rather, we hope it illustrates how readily and unconsciously privilege may be enacted and marginalization experienced in such efforts. While we each have stories to tell, one of Leigh’s experiences with hantavirus prevention education in the U.S.-Mexico border region (USMBR) follows. In the summer 1993, several sudden deaths from severe lung infections among otherwise healthy adults were reported in the southwestern United States. Led by the Centers for Disease Control and Prevention (CDC), teams of research scientists soon identified the infection as hantavirus pulmonary syndrome (HPS), caused by one of the several hantaviruses in the world.1 With the identification of the virus (now named Sin nombre), the CDC undertook a focused effort to further scientific research on the transmission 1 This particular hantavirus is spread to humans by infected rodents, specifically deer mice and cotton rats in the southwestern United States. When fresh or dried rodent urine or feces sheds the virus it becomes airborne. The aerosolized virus then can be inhaled by the human host and a lung infection ensues (CDC, 1994). While HPS is a serious public health threat because it is difficult to diagnose, has no known cure, and is fatal in approximately half the cases, it is also preventable through the enactment of simple, relatively inexpensive measures.

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and treatment of the disease and also supported an extraordinary effort to communicate information about this infectious disease and its prevention to the public. The hantavirus research team working in the USMBR had two goals: first, to conduct seroprevalence screening, i.e., testing blood for prior hantaviral exposure, and second, to develop communication strategies for the dissemination of information about emerging infectious diseases to Spanish-speaking rural, border, and migrant communities. In these efforts, we worked collaboratively with public health personnel, community leaders, and local community health workers. We participated in community health fairs, visited local schools, attended meetings of local agencies and community groups working to solve social, economic, and health problems on the border, and listened to and learned from the community. Reaching migrant farmworkers proved a challenge but we were able to develop at least one outreach strategy we hoped would be effective. One early morning the team traveled with the New Mexico Department of Health mobile medical unit to the Ciudad Juarez-El Paso border. On the Texas side of one border crossing migrant day laborers waited in the predawn hours for contractors who transported them to the fields of southern New Mexico. At 3 A.M. we met a volunteer farm labor organizer, a local female who participated as our liaison to this community on this and other occasions. We set up a table outside the medical van and brought out our Spanish-language HPS information materials, a coffeepot, and, as an afterthought, a basket filled with condoms. This last-minute gesture not only proved to be culturally insensitive but also may have inadvertently undermined the community education goal of the trip. Few men approached the table that morning, despite the persuasive efforts of the labor organizer and one Spanish-speaking male on the team. As a few farmworkers drank the proffered cups of coffee, the Spanish-speaking team members attempted to enlist their participation in the blood draw while simultaneously giving instruction about HPS prevention and offering the free condoms. Most men declined participation, refusing the condoms as well. As dawn approached and most of the vans had departed, our team discussed our disappointment. In these reflective moments, two things became clear. First, the blood draw, the condoms, and the talk about viruses likely conflated hantavirus and HIV for the farmworkers and may have resulted in misinformation and further misunderstanding of both viruses. Second, the migrant workers there were all Hispanic males with minimal education while our team was mostly female, mostly Anglo, middle class, and highly educated. Despite our efforts to collaborate with the community, it became clear to us that we had confronted our own privilege as a boundary to this educational effort in only limited ways prior to the experiences of that morning. (See Crabtree & Ford, 1998, for a description of the project and the dilemmas encountered.) Border crossings (Giroux, 1992), literally and figuratively, define community-based health communication work. Community health promotion researchers and practitioners embrace culture as the central organizing theme in shaping identity, values, and histories and engage differences such as class, race, ethnicity, gender, and sexual orientation as boundaries to be crossed within social interaction (Airhihenbuwa, 1995). As a consequence, the tensions between power and powerlessness, privilege and marginalization, participation and resistance characterize this scholarship and challenge its enactment. Despite (and perhaps because of) these challenges, we celebrate the boundary-spanning nature of community-based health communication scholarship in this chapter. Our first goal is to present theory, research, and practice in this area to date. We begin with a discussion of the complexities of the social (cultural), economic, and political context for marginalized populations and then explicate notions of community, culture, and

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communication in community-based health promotion. We then review representative research on community-based strategies for communicating with marginalized populations about health, using an analytical structure focused on the forms of community participation and empowerment. Our second goal is to provide a rationale for centralizing marginalized communities in our research, theory, and practice in the new century. We conclude with a reflection on contradictions emergent and inherent in community-based scholarship and their implications for research and practice. THE SOCIO-CULTURAL ECONOMIC, AND POLITICAL CONTEXT OF MARGINALIZED POPULATIONS

Although there are different perspectives on marginalization (e.g., Amaro & Raj, 2000; Crewe, 1997; Ferguson, 1990; Frye, 2001; Marshall & McKeon, 1996; Mokros & Deetz, 1996; Ray, 1996; Tucker, 1990; Yep, 1998), it is clear that there are numerous disenfranchised individuals, social groups, and communities in U.S. American society. Marginalization, according to Tucker (1990), is that complex and disputatious process by means of which certain people and ideas are privileged over others at any given time . . . [and] the process by which, through shifts in position, any given group can be ignored, trivialized, rendered invisible and unheard, perceived as inconsequential, de-authorized, “other,” or threatening, while others are valorized. (p. 7)

In short, this process of marginalization produces individuals, social groups, and communities that are denied full privileges, rights, access, and power within the existing political system and social structure (Ray, 1996). Marginalization exists in an ongoing dialectical tension with an invisible center (Ferguson, 1990). The center or “mythical norm” is “defined as white, thin, male, young, heterosexual, Christian, and financially secure” (Lorde, 1990, p. 282). In other words, social and cultural (e.g., race, gender, sexuality, physical appearance, age, ability, etc.) and economic factors (e.g., financial security, socioeconomic status, etc.) are used as markers to disenfranchise individuals and groups. Although these factors marginalize people in different ways, to different degrees, with different material and psychological consequences, Ray (1996) reminds us that we live in a world in which everyone can be affected in some way, “It may happen to us or to someone we care about. With a roll of the die, with great abruptness, anyone can become ‘them’” (pp. xv–xvi). In this section, we examine the contexts associated with marginalization and disenfranchisement of individuals and social groups. For purposes of discussion, we examine social, cultural, economic, and political contexts under two separate headings. However, we recognize that such contexts operate interdependently in complex and intersecting ways. For example, a poor European American, middle-aged, female, drug-using commercial sex worker operates in a society that marginalizes and attempts to silence her in multiple ways—socially, materially, politically, discursively. Through these intersecting systems of marginalization and oppression, her experience represents a nonsummative and simultaneous combination of all social, cultural, economic, and political factors. The Social, Cultural, and Economic Context

The unequal distribution of wealth, health, and life opportunities is heavily influenced by the interaction of social, cultural and economic as well as political factors (Minkler,

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Wallace, & MacDonald, 1994/1995). Individuals and groups that do not conform to the mythical norm, or “the standards of normality” in society, are marginalized and devalued, and their health concerns are treated differently than those in the dominant culture. Marginalization can be based on gender (Amaro & Raj, 2000; Bauer, Rodriguez, Quiroga, & Flores-Ortiz, 2000; Cline & McKenzie, 1996; Gutierrez & Lewis, 1997; Zambrana, 1996), race and ethnicity (Airhihenbuwa, 1995; Gutierrez & Lewis, 1997; Huerta & Macario, 1999; Zambrana, 1996), social class (Marshall & Mc Keon, 1996; Zambrana, 1996), disability (Braithwaite, 1996; Johnson & Albrecht, 1996), and sexuality (Corey, 1996; Elwood, 1999; Wohlfeiler, 1997; Yep & Pietri, 1999), among others. These marginalization markers can operate alone (e.g., disenfranchisement based on social class) or, more frequently, in combination with other markers (e.g., disenfranchisement based on social class, gender, and ethnicity). In summary, what is treated or untreated, defined or undefined, as a health or social issue is delineated by the dynamics of gender, race, class, ability, and sexuality (Minkler, 1997; Zambrana, 1996). The social, cultural, and economic context affects the individual’s daily experiences and his or her relationship to the larger social system including health care. For example, research on abused Latina and Asian women identifies a number of interpersonal, sociocultural, and systemic factors influencing their health and well-being including feelings of shame, fear of retaliation by the abuser, feelings of family loyalty, language barriers, prohibitive health care costs, medical providers’ cultural insensitivity, and inaccessible health care services like long waiting periods, among others (Bauer & Rodriguez, 1995; Bauer et al., 2000; Rodriguez, Quiroga, & Bauer, 1996). Bauer and associates (2000) found that traditional gender roles in the family influenced the women’s perceptions of abuse and their willingness to seek professional help. Both Latina and Asian participants in their study indicated their need to maintain loyalty to their families and to keep their family units intact while the Asian women reported a tremendous sense of shame and fear of ostracism. Some of the Latinas experienced discrimination and cultural insensitivity from their medical providers. Similarly, research on women living in poverty indicates that they are in poorer health than more affluent individuals (Marshall & McKeon, 1996; Zambrana, 1996). Access and availability of health care and underutilization of existing health care services are critical factors contributing to the poor health status of women living in poverty. Marshall and McKeon (1996) identified several factors leading to underutilization of health services. First, poor women, living with limited financial resources, are forced to focus on more immediate needs like food and shelter rather than on health care. Second, accessibility and availability of health services, including location and availability of appointments, transportation, and child care services, and other obstacles erected by the health care establishment, become additional barriers to seeking health care. Marshall and McKeon also reported that women living in poverty are generally less knowledgeable about health and illness, disease symptoms and warning signs, and preventive health practices. In summary, the social, cultural, and economic context of marginalized individuals and social groups creates unfriendly conditions for maintaining good health. In many ways, the health care system continues to reproduce and reflect other systems of inequality in U.S. American society today (Minkler, 1997). The Political Context

Politics is “the complex constellation of social relations among individuals” and “not solely an examination of the policy process” (Elwood, 1999, p. 5). Undoubtedly, relationships

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among individuals, groups, communities, and institutions such as health care are political. Lack of political voice, representation, and legal protection is common among marginalized individuals and communities (Bauer et al., 2000; Diaz, 1998; Diaz-Cotto, 1991; hooks, 1990; Yep & Pietri, 1999). For example, Diaz-Cotto (1991) observed that definitions of criminality and selective enforcement of offenses by the criminal justice system place working-class white and minority women in the lowest strata of society. Yep and Pietri (1999) found that, in addition to lacking political voice and representation, transgenders are disregarded and pathologized by the health care establishment in terms of biomedical and psychological research and provision and delivery of health care services. Bauer and associates (2000) identified fear of deportation and lack of legal protection as critical barriers for reporting spousal abuse and seeking health services among Latina and Asian undocumented immigrant women. In short, the political context also provides an inhospitable environment for marginalized populations. Such an environment hinders maintenance of optimal health and healthseeking behaviors by these individuals and communities. Taken together, the social, cultural, economic, and political contexts shift the focus from individually oriented health behavior change models to the larger social domain where these behaviors are enacted and rendered meaningful. This move to focus on contexts (Airhihenbuwa, 1995; Airhihenbuwa, Makinwa, & Obregon, 2000; Airhihenbuwa & Obregon, 2000) and social ecology (Choi, Yep, & Kumekawa, 1998; McLeroy, Bibeau, Steckler, & Glanz, 1988) offers major advantages over individualistic models. Choi and associates (1998) identified three potential advantages: First, it de-emphasizes the importance of the individual on behavior change and the potential concomitant of blaming the victim for lack of effort or failure to change. Second, it considers both individual and environmental influences as possible explanations for unhealthy behaviors. Third, it allows the use of environmental [and contextual] approaches in prevention programs. (p. 27)

Hence, this move provides a framework to address multilevel health risk factors affecting marginalized communities. Further, an understanding of the marginalization that arises from these larger social systems provides insight into the complexities of communitybased health communication efforts. COMMUNITY, COMMUNICATION, AND CULTURE: THE FOUNDATIONS OF COMMUNITY-BASED HEALTH COMMUNICATION INTERVENTIONS

Scholars focused on community-based strategies for improving individual and community health come from diverse disciplines but share common roots: (1) the World Health Organization’s (WHO) Healthy Cities/Healthy Communities project, advocating community-based health intervention approaches (Hancock, 1993); (2) growing dissatisfaction with the research and outcome failures of individual lifestyle based models of health promotion (Becker, 1986); and (3) the rise of alternative discourses for pedagogy, research, and theorizing within the social sciences (see Mumby, 1997, for a discussion of these discourses). In the latter case, the critical pedagogy advocated by Brazilian Paolo Freire (1998/1970) in particular, informs the community-based health intervention movement. Observing that traditional methods of literacy education were largely ineffective with poor disenfranchised Brazilians, Freire advocated an alternative approach, empowerment education defined as “a participatory education process in which people are not objects

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or recipients of educational and political projects but actors in history, able to name their problems and their solutions to transform themselves in the process of changing oppressive circumstances” (Wallerstein & Bernstein, 1994, p. 142). In summary, the community-based health promotion agenda has come to represent an alternative domain of knowledge, discourse, and methods to more traditional approaches to health promotion interventions (Robertson & Minkler, 1994; Wallerstein & Bernstein, 1994). Further, in the view of these scholars, health promotion scholarship marginalizes community, culture, and communication when the significance of these notions to health intervention efforts with disenfranchised communities is viewed as just one of a host of factors affecting health. In the following sections, we examine community, communication, and culture in community-based health interventions with marginalized groups. First, we briefly define community (the chapter by Dearing in this volume provides further discussion on issues related to defining community) and then we briefly review the two dominant frameworks for understanding health communication (Lupton, 1994; Mokros & Deetz, 1996). Next we present a view of culture that resists its essentializing form in traditional health promotion scholarship. Finally, we highlight the dialectical tension between the two communication frameworks and present the communicative activity of dialogue as central to community-based health intervention scholarship. Community in Health Intervention Programs

In general, when community is considered in health promotion activities and research, the geographic sense of locality predominates. While proponents of using community-based health promotion strategies with marginalized populations consider the effects of physical locality, they begin with a view of community as a socially constructed phenomenon. That is, community is constituted (created) and reconstituted (sustained) in the every-day communication practices of a group of people that result in a sense of shared social space, i.e., the informal social environment where community is encountered and constituted, of connectedness, and of shared language and meanings shaped by experience in a shared social, cultural, and political context (Adelman & Frey, 1997; McMillan & Chavis, 1986; Weider & Hartsell, 1996).2 Finally, significant to the goal of social change advocated by Freire (1998/1970), a community identifies shared needs and capacities. That is, the group acknowledges common concerns and through its identification of collective strengths, abilities, and resources commits to addressing those concerns in interdependent ways (McKnight, 1987; McMillan & Chavis, 1986). This sense of community profoundly alters the definition of health itself to include the social, political, and economic determinants of health. Further, the emphasis on community results in health intervention activities that are inherently political and that serve the superordinate goal of social justice (Lupton, 1994; Robertson & Minkler, 1994). Communication in Health Intervention Program

The two frameworks for understanding communication in health intervention research and practice, the instrumentality and constituitive views (Mokros & Deetz, 1996), represent

2 For example, Gerard Power and Teresa Byrd (1998) edited a recent volume focusing on health issues in the USMBR where a sense of geographic place is interwoven with culturally based community identifiers and shared sense making in health promotion activities.

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different discourses and contrasting assumptions about social actors, their social worlds, and their communicative practices. As such each discourse also reflects an ideological position (Geist & Dreyer, 1993; Mumby, 1997; Lupton, 1994). In traditional health promotion scholarship, the discourse of representation utilizing the metaphor of communication as an instrument predominates (Mumby, 1997). In this discourse, the objective nature of reality and human existence and the discoverability of truth frame research and practice. Within the discourse of representation, language becomes a “value neutral” mode of expression believed to represent and to refer to some objective reality and communication then is characterized as the exchange of information by social actors who function as processors of that information (Mokoros & Deetz, 1996). Further, communication itself is an object open to investigation and analysis by researchers and practitioners whose goal is to discover and explicate strategies to achieve maximum communicative effectiveness (Mokros & Deetz, 1996; Mumby, 1997). Hence, health promotion scholarship within this discourse emphasizes issues such as message design, communication channels, and measurable effects in a health information campaign designed and planned by experts (Lupton, 1994). The ideological position of representational discourse presumes a value neutrality while it functions primarily to maintain or enhance the existing power relationships (Mumby, 1997). Indeed, Lupton (1994) argued that the interests of health promotion researchers align with the powerful, established health care interests such that “communication is largely regarded as a ‘top-down’ and somewhat paternalistic exercise” (p. 56). Further, reliance on the biomedical model and individualistic models of health knowledge and behavior in these health interventions reifies the hegemony of the prevailing ideologies thereby deflecting health responsibility from the dominant social structures and marginalizing the role of culture in everyday communication practices (Geist & Dreyer, 1993; Lupton, 1994). The alternative discourses of communication articulated by Mumby (1997) begin with a constitutive view of communication. In this social constructionist’s perspective, our experience of reality is viewed as the product of communicative actions rather than reality as an objective phenomenon; persons and things are constituted through interaction, and interaction consists of ongoing contests of meaning. As applied to health communication, then, Mokros and Deetz (1996) stated, “To approach communication as constitutive is to throw into question persons, diseases, and health as natural categories and to instead view these categories as discursive ways of understanding experience, understandings that are socially constructed” (p. 32). Thus, individuals, communities, and health/disease are linguistic constructions based on shared assumptions about what’s true, what’s real, and what’s valued (Mumby, 1997). The discussion thus far describes a contextualized but apolitical constitutive view of communication, a critique leveled against research within the discourse of understanding (Mumby, 1997). Within a discourse of suspicion the political and ideological effects on communication practices are foregrounded (see Mumby, 1997, and Mokros & Deetz, 1996, for extended discussions). Briefly stated, in this discourse communication constitutes persons and situations but those constitutions arise from and within a political/ideological discourse that privileges certain forms and meanings over others (Mumby, 1997). This marginalization of some realities and the privileging of others reflects the economic, cultural, and ideological dimensions of power. Thus, the goal of health promotion scholarship becomes to expose and challenge those systems of domination and to centralize the voices of the disenfranchised (Lupton, 1994; Mokros & Deetz, 1996).

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Culture in Health Intervention Programs

Culture consists of a complex social, economic, and political structure characterized by a system of values that influences attitudes, perceptions, and communication behaviors and practices in a given society, within a historical context (Airhihenbuwa, 1995). Culture is constantly produced and reproduced through communication. Although some individuals and social groups are more readily marked as “having culture” (e.g., Native Americans) than others (e.g., European Americans), every individual and social group operates within particular cultural systems. Such systems are not static as Giroux (1992) reminded us, “[culture] is not an object of unquestioning reverence but a mobile field of ideological and material relations that are unfinished, multilayered, and always open to interrogation” (p. 99). In short, everyone functions within a fluid cultural system. Communicating about health inevitably occurs within a particular cultural context. Cultural sensitivity, according to Airhihenbuwa (1995), “refers to the need to develop programs in ways that are consistent with a people’s and community’s cultural framework” (pp. 6–7). If we develop, implement, and evaluate health intervention programs that are culturally sensitive, there are no “cultural barriers.” These barriers often result when dominant and hegemonic cultural standards are applied to less privileged groups (e.g., application and imposition of middle-class, male, European American beliefs and values about health and illness on poor, female, non-European American individuals) (Airhihenbuwa & Obregon, 2000). In his study on Latino gay men and HIV infection, Diaz (1998) described the sociocultural context of sexual activity among Latino gay men in the United States in an attempt to identify—instead of devalue and pathologize—the Latino cultural scripts associated with sexual expression. Because such scripts consist of factors like machismo, homophobia, family loyalty, sexual silence, poverty, and racism that are decisively different from European American gay male scripts, Diaz suggested that health messages must be tailored to the social and cultural realities of Latino gay men rather than simply adapting and imposing middle-class, European American cultural standards (see also Huerta & Macario, 1999; Yep, in press). More simply stated, to maximize the effectiveness of health messages we must construct them with cultural sensitivity. But where do members of privileged communities such as those represented by our academic and research credentials acquire that sensitivity? Dialogic encounter appears to offer one means to that increased cultural understanding. Centralizing Dialogue in Health Intervention Programs. Health promotion researchers and practitioners interested in using community-based communication strategies with marginalized populations begin their efforts from a position that supports an appreciation for a dialectical tension between the instrumentality and constitutive views of communication. While valuing the knowledge developed from traditional health promotion scholarship in communities, these researchers and practitioners reject the “power over” ideological position and embrace one of “power with” (Zoeller, 2000). Working within the worldview of community members, using their cultural knowledge and beliefs, and building on their strengths and understandings of their own needs, the role of the health communicator becomes that of catalyst, coach, facilitator, and teacher/learner. In practice, dialogue is the communicative activity through which this dialectical tension is experienced. While multiple conceptions of dialogue exist, some common themes, values, and practices emerge (see Anderson, Cissna, & Arnett, 1994). First, dialogue exists in relationship or “the between”—the region of human existence that connects one person to another (Buber, 1965). Relationship features a concern for openness and in its

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enactment connectedness, trust, respect, and hope emerge. With openness, the participants in dialogue face risk, but the risk is presumed worthy as “dialogic relations involve risking one’s position in order to arrive at new understandings, and a commitment to keep the conversation going” (Zoeller, 2000, p. 193). Further, dialogue is defined by difference. “Otherness” is key as we are called to listen to the voices of those whose language, systems of meaning, and sense of community are different from our own (Zoeller, 2000). Finally, the possibility for change emerges in dialogue. Participants may find that dialogue challenges the unexamined certainties held as truth by the individual or the group. This possibility for change is the central purpose of dialogue in community-based health interventions. Relying on Freire’s notion of dialogue in empowerment education, the dialogic practices advocated reflect the themes heretofore described, but in addition a political consciousness infuses dialogue as it develops over time; the intent of dialogue is distinctly liberatory. As a democratization of both method and content, the goal of dialogue is to create conscientizacao, or consciousness raising. The dialogic content begins with the existential reality of people’s lives focusing on the here and now of people’s daily existence and local realities. As the dialogue unfolds, community members draw on their own experiences and practical knowledge to try to make sense of their situations and are free to challenge alternative interpretations. Through the sharing of interpretations a collective knowledge develops and a critical consciousness emerges, an awareness of societal power contradictions and a consciousness of the personal experience of oppression and one’s place as a member of an oppressed community (Freire, 1998/1970). Motivated by consciousness of oppression, individuals and groups can mobilize their skills and resources to actively change their situations. Through the dialectical process of collective action (or praxis) and reflection individuals, groups, and communities empower themselves to act effectively for individual and social change. In summary, dialogue is a collaborative activity existing in dialectical tension with collective action. When dialogue occurs, the result is the hopeful possibility that individuals and communities empower themselves, enhancing community, building social capital, and leading participants to act in ways that create justice and human understanding. The ideal of dialogue, however, is challenged by multiple barriers to its enactment, barriers as mundane as time and as complex as our multilayered identities in interaction. In most research on community-based health interventions, the pragmatic sense of dialogue prevails. That is, researchers, practitioners, and community members engage each other in many ways, some truly dialogic and others more or less participatory. REPRESENTATIVE RESEARCH ON COMMUNITY-BASED STRATEGIES FOR COMMUNICATING WITH MARGINALIZED POPULATIONS ABOUT HEALTH

Empowerment is the central organizing theme of all community-based health promotion strategies with marginalized populations; however, Freire’s (1998/1970) explication of empowerment action in communities reveals a complex set of intersections and ongoing dialectical tensions. Specifically, the forms of participation and the levels of empowerment and transformation are interrelated, are not mutually exclusive, and reciprocally influence one another. Thus, in its enactment in community-based health intervention research and praxis, empowerment is both a process and an outcome and occurs at both the individual and the community level (Bandura, 1997; Perkins & Zimmerman, 1995). Following Freirean ideals, community-based health promotion activities center on the notions of participation and empowerment. The former democratizes health intervention

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efforts as individuals and communities identify their own health concerns, determine the best strategies for addressing those needs within their communities, and then enact those strategies. The latter suggests a transformation. Individuals and communities once disenfranchised gain power, not simply in reference to the specific health issue addressed but also in the development of added community capacity and increased social justice. As succinctly stated by Wallerstein and Bernstein (1994), empowerment is “an interactive process of change, where institutions and communities get transformed as people who participate in changing them become transformed” (p. 142). In summary, community-based health interventions challenge hierarchical, patriarchal, coercive conceptualizations of power with a conceptualization of power that features participation, caring, and responsibility to others (Fawcett, Paine-Andrews, Francisco, Shultz, & Ricter, 1995). Further, community health interventions have an emancipatory goal. Through these community-developed and community-enacted interventions, the marginalized community challenges the larger structural systems of domination, i.e., the social, political, cultural, and economic forces that function to preserve the power of the oppressors and continue the subjugation of the oppressed. In the following section, we examine representative emancipatory projects using community-based strategies for communicating with marginalized populations about health.3 The level of community participation in problem identification, solution development, and strategy enactment is the key organizing scheme for this examination. We recognize that because of the long term, “bottom-up” nature of these emancipatory projects, multiple types of community participation and multiple specific empowering outcomes may constitute a single project. Grassroots Organizing: Participation of Citizen Volunteers and Community Activists

Many advocates of community-based health promotion efforts view grass roots organizing as the beginning of social change. In general, such efforts feature the committed collective action of a small group of people, usually citizen volunteers or community activists who come together at their own initiative to improve conditions in their communities (Bettencourt, 1996). These projects often begin with the broad goal of improving community health, but the definition of health, the identification of specific health needs, and the strategies for addressing those needs arise from the citizen group. The Casa en Casa project of La Clinica de la Raza (LCDLR) in East Oakland, California, a Latino community of primarily Mexican immigrants, provides an exemplar. Founded in 1971, at the height of the Chicano movement by university students who were influenced by Freirean theory, the LCDLR began as small medical clinic offering free, culturally and linguistically appropriate care to low-income residents. Over the years, community involvement in the clinic and staff involvement in the community led to increasing commitment to community health education (CHE) activities until a separate unit of the clinic, Casa CHE, was established for this purpose. The educational staff was 3 Community-based health promotion scholarship owes much to participatory action researchers who have been using these ideas in developing countries for some time. This review, however, focuses on marginalized populations in the United States and in Canada, which as a matter of national policy has undertaken this approach. Further, the studies presented in this review come from a variety of disciplines, emphasizing the interdisciplinarity that has been encouraged by mutual scholarly interests and by the advocacy position taken by WHO in its Healthy Cities/Healthy Communities initiative.

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committed to empowerment education and began community organizing through the Casa en Casa project, where neighbors met weekly in participants’ homes to learn about health, to discuss personal concerns, and to develop community actions. Some community empowerment resulted as a few Casa en Casa groups engaged in political activity, such as resistance to cutbacks in human services, but the individual level of empowerment was more commonly experienced by members who received support and information as a result of their participation in the group (Merideth, 1994). Although it is true that “grassroots activity can be started by anyone with an issue to address and an ability to communicate a message” (Bracht, Kingsbury, & Rissel, 1999, p. 97), it is also true that a community’s marginalized status may contribute to an inability to initiate action as members are caught by their own domination and the struggle for survival consumes daily attention and time. Thus, in many community-based health intervention “grassroots” projects, health professionals actually initiate problem identification efforts and community involvement by identifying community leaders or by calling for citizen volunteers (Kar & Alcalay, 2001). The starting point for this sort of grassroots health development project then is the establishment of the relationship necessary to dialogue. Specifically, health promotion scholars must exhibit the attitude of listener and learner to earn the trust of and openness with community members (Dervin, 1989). As a variation on the formative research more familiar in traditional health promotion scholarship, researchers and practitioners encourage the voices of community participants in an effort to understand their worldview. Thus, many projects begin with participant observation, in-depth interviewing with key informants, door-to-door surveys, or focus groups (Byrd, 1998; Myrick, 1998; Travers, 1997). For example, in the HPS prevention project described early in this chapter, we noted the many forms of participation in which we engaged to develop a committed presence in the community and collaborative relationships with community members (Crabtree & Ford, 1998). We also conducted individual and focus group interviews with promotoras (community health workers) to learn about the borderland community and its health concerns and to uncover mutual benefits of further collaboration (Ford, Barnes, Crabtree, & Fairbanks, 1998). These formative activities represent a transitional phase in the relationship from researcher-subject to participant-collaborator. Hence, while the project may have been initiated by the health communication professional, the meaning of the issue and strategies for addressing that issue are community driven. Traver’s (1997) emancipatory project with low-income women in an urban area in Canada illustrates these transitions. The central concern of this empowerment education project was reducing nutritional inequities. Travers began the project as a participant-observer at a community drop-in parent center. After a few weeks, she began to hold group interviews/discussions with women who attended an informal weekly women’s coffee group at the center. These discussions focused on the women’s experienced difficulties in feeding their families. Over time these women acquired increased awareness of the sources of their oppression and began to develop plans of action to address their oppression. Early in their discussions one woman observed that groceries cost more in urban neighborhoods than in the suburbs. After some discussion of other concerns, the group focused their energies on this issue. Members conducted a comparison shop and verified the significant price differential. After discussing several options over several weeks, the group, supported by Travers’ advocacy, wrote letters to both community supermarkets, noting their findings and recommendations for action, and both stores reduced price inequities. Further, a subgroup of women, with the aid of the researcher, secured grant funding for the establishment of a grassroots cooperative grocery now run by women from the community. Through their participation

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in empowering activities, these women empowered not only themselves but also their communities. In summary, grassroots organizing typically yields a small group of individuals who through their participation are empowered. At times they are able to effect social change and mobilize the community; more often these empowered individuals engage members of their social networks in informal interaction. We now examine the significance of those social networks to emancipatory projects. Social Networks: Community Health Workers as Boundary Spanners

One of the most frequently utilized forms of empowerment and participation in communitybased health communication interventions is collaboration with community health workers (CHWs) or lay health advisors (CDC, 1994). CHWs are trusted and respected community members who provide informal, community-based health-related services and communication interventions. Many CHWs are women who work as volunteers for the betterment of their communities, although increasingly their efforts are being supported by private and/or public health agencies and institutions (Walker, 1994). Some community empowerment projects focus on creating lay health advisors (Bird, Otero-Sabogal, Ha, & McPhee, 1996; Booker, Robinson, Kay, Najera, & Stewart, 1997; Byrd, 1998; Lugo, 1996; McFarlane & Fehir, 1994; Merideth, 1994) whereas other projects utilize existing CHW networks (Ford et al., 1998; Myrick, 1998). As indigenous residents of marginalized communities, CHWs are uniquely knowledgeable about community needs and as respected members of the community and the culture, they bring to their work the language, the cultural understanding, and a worldview shared with community members (CDC, 1994). In areas where CHWs are serving, they are able to communicate to professionals the needs of community members and to provide quality health promotion and disease prevention information to the community in the voice of the community. The degree of participation by CHWs in problem identification and strategy development varies. For example, in the second phase of the HPS prevention project the research team brought the health issue to the attention of the CHWs who, unknown to the team, had also identified this as a community concern following the HPS-caused death of a local agricultural worker (Barnes, Ford, & Crabtree, 2000). In contrast, Byrd (1998) described a child immunization project totally initiated by a group of health promotoras involved in Project Verdad in the USMBR. Furthermore, these CHWs also developed the outreach strategies for this project. In most cases CHWs participate in some formal training about health issues, but often the CHWs look for and create opportunities for communicating that information in locally acceptable ways. To illustrate, in the HPS project we trained CHWs, focusing on hantavirus transmission and HPS prevention. We then provided a variety of materials for them to use in the community, including videos (and portable TV/VCRs) and pamphlets in English and in Spanish, prevention demonstration materials, and magnetized cards using graphics depicting prevention strategies. In evaluation focus groups with the CHWs, we discovered that they engaged in a wide range of educational approaches and use of the materials as they disseminated this prevention information across southern New Mexico (Barnes, Ford, & Crabtree, 2000). Ford et al. (1998) articulated the constellation of public health and communication roles that CHWs can enact in their communities. In public health practice, a CHW may act as a lay health educator, lay health care referral source, health practice role model, and/or social support provider. The Camp Health Aide Program (CHAP) serving migrant

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farmworkers in the Midwest (Booker et al., 1997) and the previously noted Project Verdad (Byrd, 1998) are excellent examples of these enactments. From a communication perspective, CHWs are described as participants in formal and informal networks of communication, collaborating simultaneously as group members and intergroup linkers. In other words, they have significant amounts of communication with other members within a group and also serve to bind two or more groups together, moving messages from group to group, and hence enacting the network roles of opinion leader, gatekeeper, bridge, and liaison (Ford et al., 1998). The Resource Sisters/Companeras (Lugo, 1996) and De Madres a Madres (McFarlane & Fehir, 1994) programs demonstrate clearly the linking and boundary spanning actions of CHWs (Ford et al., 1998). In short, CHWs become catalysts for change. Through their public health and communication network role enactments, they promote community organizing efforts and enable individual empowerment. Significantly, community health workers empower themselves as they become a means to empowerment for individuals, families, neighborhoods, and communities (Ford et al., 1998; McFarlane & Fehir, 1994). Macro Networks: Community Coalitions

Coalition formation has become an important form of community member participation in community-based health promotion activities. Conceptualized as a communication network of communication networks, a community coalition brings together in a single group or organization individuals who represent diverse organizations or constituencies in an alliance to achieve a common goal (see Butterfoss, Goodman, & Wandersman, 1993, for a review). By developing communication linkages among existing organizations and groups, a coalition results in community participation that exhibits a depth and breadth of membership with a far-reaching effect in the community. Further, this increased participation, albeit indirect and representative, potentially may enhance ownership of coalition-generated approaches to health needs and hence can facilitate the mobilization of community members and increase the available resources in the enactment of coalition-developed strategies (Bracht, Kingsbury, & Rissel, 1999). In most empowerment education models of community-based health interventions, coalition formation occurs later in the experience of empowerment. For example, the De Madres a Madres project was designed originally to link volunteer mothers with pregnant community members. In the project’s third year, the volunteer mothers defined coalition formation as a goal for more effective community action for mothers and infants, but it was not until the fourth year of the program that substantial coalition formation took place, linking the project with the Women’s Center, local schools, and a health clinic (McFarlane & Fehir, 1994). By the fifth year of the project, the volunteer mothers, some of whom were now paid staff members, completely directed the activities of the program, focusing not simply on maternal health issues but health issues of the family unit. In addition to the more typical later emergence of coalitions, some community-based health intervention programs begin with the notion of coalition formation, as evidenced by projects uniting African American churches together with a variety of health care and health education organizations (Jackson & Reddick, 1999; Kong, 1997). The links between community coalition formation and community empowerment can be seen in the activities of the CHWs in the USMBR (Ford et al., 1998). Following an outbreak of cholera in an underdeveloped community (a colonia), CHWs created linkages with state and local environmental safety and public health officials in order to teach principles of sanitation, proper sewage disposal, and maintenance of appropriate potable

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water levels to community members. As a result of this outreach, the community developed an interest in further training and in writing a proposal in collaboration with these various agencies that would fund sewer infrastructure improvement, road paving, and street light installation. The success of the implementation stimulated a long-term potential among community members to further advocate for community change. In summary, opportunities for successful community mobilization toward political action increase with the diversity of represented organizations in community coalitions. Simultaneously, participants in these coalitions may experience a sense of individual and community empowerment. However, such coalitions can be fragile and difficult to coordinate and hold together for any kind of social action. CENTRALIZING MARGINALIZED COMMUNITIES IN HEALTH COMMUNICATION RESEARCH IN THE 21ST CENTURY: IMPLICATIONS FOR THEORY, RESEARCH, AND PRAXIS

It has now been a little more than 20 years since the launching of the Healthy Cities/Healthy Communities project. While some progress in health improvement and community empowerment has been achieved, much remains to be accomplished in the new century. Bernstein and colleagues (Bernstein et al., 1994) described the scope of the challenge in their rationale for the transformation of a hospital emergency department to a communitybased approach: Daily, we are faced with the casualties of oppression and violence, battering, rape, elder abuse, suicide, environmental disasters, alcohol and drug-related health problems, homelessness, deterioration of medical conditions due to poverty, inadequate nutrition, poor dentition, and general lack of access to health care and prevention. Racism, sexism, ageism, ableism, classism, and ethnocentrism are not just politically correct words; they are realities—the faces of people, their lives, personal and community biographies. (p. 292)

Further, this day-to-day experience of oppression takes place within the ubiquitous context of globalization that dominates markets, states, and our understanding of civil society. Hendriks (2001) argued that the seemingly natural and unalterable progress of globalization limits discourse on the reality of its consequences: environmental degradation, escalating worldwide poverty, the dehumanizing effect of public policies, the monopoly of wealth and power in the hands of the few. Such societal actions serve to increase fragmentation at the local level, heightening “difference” and normalizing oppressive relations. Freeing human capacity to live fully and authentically and experience its political expression in democratic action as supported in the community-based health promotion approach has important implications for communication scholars. Zoeller (2000) describes the Healthy Cities movement as “a concrete example of a significant attempt at invigorating public dialogue and developing democratic alternatives to bureaucratic organizing” (p. 192). As critical communication scholars, we work to understand, reveal, and then challenge the institutional and ideological contexts that impede dialogue. In community, we work to foster dialogue to identify health concerns as political and social problems, soluble by individual and community effort. Through community-based health communication scholarship, we support the development of participatory models of communication where “participation is a normative standard against which all acts of communication can be judged” (Deetz, 1999, p.147; see Deetz for full discussion of participatory democracy as a normative foundation for communication studies).

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The relevance of community-based health communication scholarship with marginalized communities in the 21st century to the health and well-being of individuals and society at large then is clear. Through engagement in and with marginalized communities boundaries are crossed, difference is celebrated, and cultural empowerment becomes the source and also the result of citizen participation (Airhihenbuwa, 1995).4 Through the efforts of community members local, democratic actions potentially can build healthy public policy, create supportive environments, strengthen community action, develop individual skills, and reorient health services (Ottawa Charter for Health Promotion, 1986). REFLECTIONS ON THE COMPLEXITIES OF COMMUNITY-BASED SCHOLARSHIP FOR HEALTH COMMUNICATION RESEARCH AND PRAXIS

In this chapter we have presented an overview of research and practice in communitybased health intervention scholarship based on liberatory dialogue. We described the complexities of the socio-cultural, economic, and political context for marginalized populations, and advanced an argument for the centralization of marginalized communities and participatory communication in health promotion in our future research, theory, and practice. Whereas we have argued for increased attention to this scholarly approach to health communication research and practice, we acknowledge that contradiction, paradox, and dialectical tension characterize this pursuit. Further, these tensions are fundamentally unresolvable. Community-based health intervention scholarship begins with the primary tension between the microlevel (individual) and macrolevel (sociopolitical) as the focus for transformation. This dialectic is influenced by and interrelated with multiple other dialectics. For example, participants have both a collective and an individual identity and can experience marginalization as individuals and as members of a particular community or culture. The tension between process and outcome in empowerment also has been described here and this tension suggests the contradiction of the need for order and organization in the effort to invoke emancipation and choice. Other dialectics have been identified in the enactment of emancipatory projects (see Zoeller, 2000). Of these dialectics perhaps the most troubling is the dialectic between empowerment and disempowerment. This dialectic emerges via the co-optation of terminology where a distinctly social justice–oriented approach is used to achieve conservative political ends to deny and further marginalize individuals and groups through the elimination of important social and economic system supports. For the community-based health communication scholar, the position of researcher also is experienced dialectically. One is both teacher and learner, participant and facilitator, and ultimately researcher and practitioner. These dialectics then have implications that apply to both research and practice. First, the researcher-practitioner must develop his or her own critical consciousness. As Airhihenbuwa and Ludwig (1997) pointed out “many subscribe to Freire’s notion of critical consciousness as long as it is the consciousness of the ‘targeted 4 Airhihenbuwa (1995) proposes a cultural empowerment model, known as PEN-3, a conceptual framework for health intervention programs centered around a dialogic process that allows individuals in communities to address issues of cultural sensitivity and cultural appropriateness in program development, implementation, and evaluation. The model demands that health communication interventions be constructed to resonate and reflect the cultural realities of the community rather than imposing or adapting the dominant cultural perspective on this group. (See Airhihenbuwa (1995) for the complete explication of the model.)

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community’ that is being examined rather than that of the interventionists” (p. 318). An empathy for the marginalized without commitment to engage in meaningful empowerment education reifies their marginalization. As researchers-practitioners, we must continue to live and act reflexively, to ask critical questions of ourselves and of others so that dignity and freedom for all become a reality. Second, as researchers and practitioners, we must create a space for alternative voices to be heard. In the academic community, we must work to legitimate alternative research strategies such as ethnographic methodologies in pursuit of health understandings. Alternative voices in the community reflect multidimensional identities and the forms of expression and understanding of those identities are culture specific, e.g., the significance of oral storytelling in African American culture suggests alternative strategies for both gathering and disseminating information within this marginalized group. As a corollary to the notion of alternative voices, the recruitment and retention of academicians from marginalized communities is an absolute priority and an ongoing need and concern for community-based scholarship. Additionally, we must encourage the legitimacy of alternative outcomes as measures of success for health communication interventions. For example, these emancipatory projects often do not conform to conventional time lines and frequently are met by surprises and setbacks. Further, hypothesis generation and testing as linked to communication effectiveness cannot be a goal. Success may be measured instead by the accomplishments, small and large, of individuals and communities and the type and quality of participation in the community dialogue. Third, in pursuit of these goals the researcher-practitioner must acquire a nontraditional set of skills. These skills include strategies for grassroots organizing and community building and techniques in community and group facilitation, in addition to acquiring expertise in ethnographic research methods. The researcher-practitioner must also be conscious of the need to function as an advocate in alliance with the marginalized community (Lupton, 1994), occasionally becoming the voice that speaks truth to power. In closing, we are painfully aware of how little the voices of the community have been heard in this chapter, despite its emphasis on empowering and empowerment. Once again, hegemonic forces win. Thus, we end with a reminder from one participant in an emancipatory project, as quoted in Poole and Van Hook (1997). Don’t start with the notion that you have to “empower” us. Recognize that we are in power. This is our community and when your program is gone, we’ll still be here. (p. 3)

In truth, not only will the researcher-practitioner be gone, he or she should be gone. The meaning of real emancipation is that individuals gain control over their lives, persons in communities experience democratic participation, and communities develop a critical understanding of the social and political environment and an ability to act on those understandings (Perkins & Zimmerman, 1995). In the end, it is their community; we are merely sojourners, crossing borders. REFERENCES Adelman, M. B., & Frey, L. R. (1997). The fragile community. Mahwah, NJ: Lawrence Erlbaum Associates. Airhihenbuwa, C. O. (1995). Health and culture: Beyond the western paradigm. Thousand Oaks, CA: Sage.

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13 Social Support, Social Networks, and Health Terrance L. Albrecht College of Medicine H. Lee Moffitt Cancer Center and Research Institute University of South Florida

Daena J. Goldsmith University of Illinois

Social support provides general social therapy for all types of incongruities one may encounter, soothing and relieving the symptoms of the person encountering the incongruity. The absence of social support seems to be an incongruity of considerable significance for most people. . . . Social support provides each person with a communication network that is a safe base. Here he [sic] can be accepted whether he succeeds or fails in other networks. Here he can retreat to take stock of himself and prepare to meet ‘life.’ Here he is accepted as a ‘whole person,’ and all his various qualities, roles, desires, and the like are of interest. He is not simply a role player whose private life is of no concern to others. —Moss (1973, pp. 236–237)

Nearly three decades ago, in Illness, Immunity, and Social Interaction, Moss (1973) described the function of social support as “social therapy”; that is, a process occurring in communication networks, operating for the purpose of helping people to cope with “incongruities.” Though the specific terminology has changed over the years, researchers across the social sciences, epidemiology, public health, and medicine have long recognized the importance of supportive communication as a necessary condition for the quality of life and for healthful living (e.g., Berkman & Syme, 1979; Cassel, 1976; Cobb, 1976; Moss, 1973). Social support is a communication behavior, as fundamental to interaction as the communication behaviors of informing, persuading, or teaching. Social support is a process embedded in structures of ordinary relationships in social life (Goldsmith, McDermott, & Alexander, 2000). It also is the foundation for extraordinary deeds in situations of extreme distress (i.e., the rescue of the Jews during the Holocaust and other genocides; Albrecht, 1994a; Gourevitch, 1998). Empirical studies of supportive interactions and influence gathered momentum during the 1980s (e.g., Albrecht, Irey, & Mundy, 1982; House,

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1981; Thoits, 1984; Wortman, 1984; Wortman & Lehman, 1985). Evidence for the causal link between social support and health/health status mounted, with studies repeatedly showing that formal and informal social support between and among intimates, friends, family members, acquaintances, task associates, strangers, and others had profound consequences for mental and physical well-being. Not surprisingly, the issue captivated social and behavioral researchers who began to document the process in early longitudinal, epidemiological studies (Berkman & Syme, 1979). The notion that network structures of social support and the processes of supportive communication behavior would impact health outcomes and mortality was conceptually groundbreaking and responsive to the criticism regarding the dearth of explanatory models for the relationship between social behavior and biomedical problems (Moss (1973) referred to this relationship as the concept of “biosocial resonation”). Investigation has continued to proliferate across the social and health sciences, describable now as a vast, multidisciplinary body of theory and empirical findings (e.g., Albrecht, Blanchard, Ruckdeschel, Coovert, & Strongbow, 1999; Klein & Milardo, 2000; Goldsmith et al., 2000; Goodwin & Plaza, 2000). The purpose of this chapter is to provide an overview of the prominent research areas regarding the impact of supportive communication on health. Several important literature reviews already exist (e.g., Burleson, Albrecht, & Sarason, 1994; Heaney & Israel, 1995; Uchino, Cacioppo, & Kiecolt-Glaser, 1996; Sarason, Pierce, & Sarason, 1990). However, most derive from the domains of interpersonal communication, sociology, health education, and social psychology. Our contribution is to provide a review of this terrain from the vantage point of health communication. We include a brief overview of the history of conceptualizing social support as communication, a summary of representative findings on the relationship between supportive interaction and health and illness, a discussion of promising frameworks and directions for research, and a review of the implications for further practice and interventions. HISTORY AND ORIGINS OF SOCIAL SUPPORT AND HEALTH COMMUNICATION

In his 1976 presidential address to the Society for Psychosomatic Medicine, Sidney Cobb, a physician, termed social support as one of three classes of information that “led the subject to believe that he/she 1) is cared for and loved; 2) is esteemed and valued; and 3) belongs to a network of communication and mutual obligation” (Cobb, 1976, p. 300). Cobb’s definition was one of the first well-developed conceptualizations of social support, noteworthy because early on he clearly framed support as a communicative process and structure bearing particular types of influence on the individual. A decade later, Albrecht and Adelman (1987) downplayed the individual-difference aspect of support as related to the individual’s “perceptions” (e.g., Eyres & MacElveen-Hoehn, 1983; Moss, 1973; Tolsdorf, 1976) and emphasized the notion that social support could vary in more or less functional or dysfunctional patterns based on variations in social interaction (see also Caplan, 1976; Kahn & Antonucci, 1980; Schaefer, Coyne, & Lazarus, 1981). As researchers continued to investigate the health effects of supportive relationships, measures of social support began to be refined in the 1980s. The interplay of theory and methodology laid a foundation for further conceptualization. More formal measures were developed (e.g., House & Kahn, 1985) and conceptual debates flourished, which, in turn, further shaped theoretical views of support (for a review, see Cohen & Wills, 1985). Communication is the natural core discipline of theory and research on social support (Albrecht & Adelman, 1984; 1987). Engaging in supportive interactions is an enactment of

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the need for human connection and meaning, so to interpret or render sensible one’s circumstances or life events in relation to health and emotional well-being. A health-enhancing supportive encounter is one where the value of the messages exchanged is based on the extent to which the information obtained is useful for managing health-related uncertainty (or information incongruities, Moss, 1973) and increasing the perception of personal control and the ability to act to achieve positive health goals (see Albrecht, Burleson, & Goldsmith, 1994). Social support is inherently a reciprocal process, occurring in socially constructed networks of close relationships (e.g., intimates, family/kin, significant others, friends) and weak ties (less-developed relationships between people who are less familiar with one another, e.g., acquaintances, strangers, coworkers, distant neighbors). In short, “social support” is an overlay for considering the interactional processes through which relationships and networks of clustered relationships manifest in helpful and sometimes unhelpful (Albrecht & Adelman, 1987) relational patterns. The perspective on social support in this chapter evolves from an earlier definition by Albrecht and Adelman (1987, p. 19): “Social support refers to verbal and nonverbal communication between recipients and providers that helps manage uncertainty about the situation, the self, the other or the relationship and functions to enhance a perception of personal control in one’s life experience” (p. 19). We emphasize the notion that supportive communication functions to help “manage uncertainty,” rather than reduce uncertainty (as originally conceived by Albrecht & Adelman, 1987), given recent research on life-threatening disease where messages conveying ambiguity about otherwise certain outcomes (e.g., death and dying) provide hope and motivation (e.g., Albrecht, et al., 1994; Brashers, Neidig, & Goldsmith, 2000; Ford, Babrow, & Stohl, 1996). Primary types of supportive communication include messages that help others gain perspective shifts on cause-effect contingencies, enhance another’s training or skills, promote behaviors that provide tangible assistance without feelings of undue or excessive reciprocal obligation, offer opportunities for others to engage in protected disclosure or venting of pent-up thoughts and emotions, and offer messages that provide acceptance and reassurance of another’s sense of self-worth, dignity, and face (Albrecht & Adelman, 1987; Goldsmith, 1994; Kalbfleisch & Bonnell, 1996; Keeley, 1996). The conceptual foundations and research debates of the past decades demonstrate that for understanding health communication, “social support” is not a single, unified construct. Greater value exists in viewing social support as an umbrella term for a providing a sense of reassurance, validation, and acceptance, the sharing of needed resources and assistance, and connecting or integrating structurally within a web of ties in a supportive network.

REVIEW OF LITERATURE: IMPACT OF SOCIAL SUPPORT ON HEALTH AND ILLNESS

The outcome of supportive communication on specific health indicators and disease trajectories is complex and varied. Beginning with the basic premise that the principal function of support is to manage health-related uncertainty, helpful supportive resources include 1) expressions of encouragement, hope, reassurance, caring, concern; 2) feedback about one’s health behavior and health risks; 3) general health information and modeling of healthy behavior for health promotion; 4) facilitating coping; 5) provision of lay referrals to professionals in the health system; and 6) assistance, especially with adherence to prescribed health regimens (Albrecht & Adelman, 1987; Brownell & Shumaker, 1985).

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Impact on Mortality and Morbidity

The extent to which social support actually prolongs life is a challenging research focus, given the need for longitudinal data and careful controls, both of which have been difficult to obtain. The extent to which supportive behavior contributes to the reduction of mortality and morbidity and improves the quality of life for patients, families, and communities remains relatively unknown, unexplored, and underfunded (Burish, 2000). The extant evidence is scattered but promising. Following the Alameda study (Berkman & Syme, 1979) showing decreased life expectancy for relatively isolated populations, studies have primarily linked life and death outcomes to support under conditions of chronic disease. Case, Moss, Case, McDermott, and Eberly (1992) found that individuals living alone, as opposed to those living with others, were twice as likely to have a second heart attack—and die from that attack—within six months of suffering the first one. Prominent work has shown a biomedical explanation for this relationship, demonstrating that support positively impacts the immune, endocrine, and cardiovascular systems (see a major review by Uchino et al., 1996). Interestingly, their analyses of findings from 81 studies showed that types of social relationships (particularly family ties) were consistently important in considering physiological functioning. Emotional support, in contrast to informational support, was a better predictor of neuroendocrine function. And, questions remain as to the interaction effect between interactional dynamics and personality predispositions (e.g., hostility, aggression) in affecting relationship quality and health indicators. Psychologists Cacioppo, Berntson, Sheridan, and McClintock (2000) described several ways in which social factors have adverse health outcomes. The implication for health communication from their important review is that positive social support cancels the negative consequences of social isolation by influencing recipients to have more adaptive coping responses to acute and chronic stress, improve patterns of health behavior, improve beliefs and attitudes about life and self-esteem, increase their hope for the future, and deepen their sense of life purpose. In addition to large-scale epidemiologic studies, there is also a growing body of research on the health effects of social support that is disease- or condition-specific. Two areas of research are illustrative examples. First, research on the effects of support on the coping and prognosis of cancer patients illustrates how support may effect treatment of and recovery from life-threatening illness. Second, research on the role of support in facilitating prenatal care and pregnancy outcomes for low-income women shows how support may affect preventive health care. Exemplar 1: Cancer Patients. Cancer patients in particular face a myriad of challenges in order to survive the diagnosis, treatment, and the social and health implications of their disease. The experience of cancer is arguably a time of stress and change. Either the patient turns to available sources of social support or others are prompted to initiate acts of help giving. Regardless, studies have shown patient preferences for different types of support from different sources (Dakof & Taylor, 1990; Neuling & Winefield, 1988; Rose, 1990). Supportive interactions related to cancer are complex and result in varying degrees of success or failure. Cancer survivors have identified specific areas that support attempts need to address: uncertainty about cancer recurrence; self-esteem; body image; somatic distress; a concern for family relationships; increased anxiety experienced by single as opposed to married patients; a desire for effective communication among the survivors, health professionals, and family members, and a need for consideration of the impact of

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employment and insurability issues (Gerlach, Gambosi, & Bowen, 1990; Kaplan & Miner, 2000). Much of the research on social support and cancer survival has been conducted on populations of women with breast cancer. The general conclusion from several studies has been that patients who confide their fears and concerns to loving close ties, such as a spouse or close friend, tend to fare better emotionally (Dunkel-Schetter, Feinstein, Taylor, & Falke, 1992; Lichtman, Taylor, & Wood, 1987). Primomo, Yates, and Woods (1990) found women with chronic illness perceive significantly more support of all types (e.g., emotional reassurance, affirmation, tangible assistance) from their partners/spouses than from others. Lichtman et al. (1987) found that the strength of the precancer marital relationship correlated with postcancer marital satisfaction for both spouses. Postcancer marital adjustment was somewhat associated with the patient’s adjustment to the disease experience. Reciprocity has been empirically shown to be a complex yet important dynamic in close supportive relationships. Vinokur and Vinokur-Kaplan (1990) found that wives (specifically long-term survivors) reported giving more assistance than they received, though husbands of recently diagnosed women reported giving more support than they received (their reports were corroborated by their wives’ reports). Alternatively, Northouse (1988) found that after surgery and beyond, mastectomy patients and their husbands showed a pattern of reciprocity of support in adjustment to the disease course. Support from kin and close friends is most specifically associated with patients’ adjustment to the disease. Although the presence of nonsupportive family and friends is limited, Lichtman et al. (1987) found that nearly half the patients in their study reported surprise at receiving at least one nonsupportive reaction. Gotcher (1992) found both women and men undergoing radiotherapy (women with breast cancer and men with prostate cancer) reported the importance of emotional support, especially valued when provided by family members. However, it was also found that when kin avoided uncomfortable topics, patient-caregiver relationships did not appear to be adversely affected. Zemore and Shepel (1989) found that women with breast cancer received greater emotional support from family and friends than did the control group. Tempelaar, deHaas, de Ruiter, Bakker, van den Heuvel, and van Niuwenhuijzen (1989) found sicker cancer patients reported receiving more help and support than those who were less sick. There is some evidence for positive effects of support group participation for cancer patients (e.g., Fawzy et al., 1993; Spiegel, Kramer, Bloom, & Gottheil, 1989). Such groups may be especially important for those whose own social networks have responded negatively or failed to provide desired forms of support (Bauman, Gervey, & Siegel, 1992; Ward, Leventhal, Easterling, Luchterhand, & Love, 1991). Research on the effects of support groups more generally is addressed later in this chapter in our discussion of support interventions. Exemplar 2: Low-Income Pregnant Women. Recent studies show that supportive communication emerges as a central determinant of the health and well-being of vulnerable populations as well. Data show that kinship support networks are deteriorating in low-income and minority communities due to unemployment, transience, and substance abuse (Roschelle, 1997). This is particularly troubling for the health of low-income pregnant women whose ability to access and utilize the health care system is directly a function of the type of tangible support available to them such as reliable transportation to the clinic (Aved, Irwin, Cummings & Findeisen, 1993; Blankson, Goldernberg, & Keith, 1994; Mikhail, 1999).

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In addition, supportive interactions impact the mother’s level of information, knowledge, experience, feelings, and perceptions about herself and the pregnancy. Informational support from others may help her recognize the symptoms of pregnancy (Maternal and Child Health Services, 1996), understand the reasons to seek care, and overcome perceptions of the exam procedures as relatively painful and difficult to endure (Byrd, Mullen, Selwyn, & Lorimor, 1996). Informational support will also help a low-income woman better navigate the complex and often daunting health care system by providing advice on when and where to obtain timely prenatal care services, referrals to physicians who accept Medicaid patients (and treat them respectfully), and information on whether care can be initiated while awaiting Medicaid eligibility approval (Omar & Schiffman, 1995; Meachen & Kelley, 1991; Zaid, Fullerton, & Moore, 1996). Access is affected by the pregnant woman’s supportive residential and relational environment. Those who are transient (Higgins & Woods, 1999) and/or living in distressed urban neighborhoods (Conrad, Hollenbach, Fullerton, & Feigelson, 1998; Perloff & Jaffee, 1999) have limited access. Unmarried women, those women lacking a relationship with the baby’s father, and those women who are victims of partner physical violence are less likely than women without these circumstances to connect with care services (D’Ascoli, Alexander, Petersen & Kogan, 1997; Wiemann, Berenson, Pino, & McCombs, 1997). As in access, the mother’s relational and residential environment is important for maintaining utilization of prenatal care services. Women who report social support from their partner are more likely to utilize care (Gazmararian, Arrington, Bailey, Schwarz, & Koplan, 1999; Schaffer & Lia-Hoagberg, 1997). THEORETICAL EXPLANATIONS

Whereas explanations for the processes and effects of social support are many and varied, with respect to health issues, two areas are especially fruitful for theorizing: the structural aspects of supportive relationships (i.e., networks) and the transactional processes occurring in those relationships. Communication processes are involved in developing and maintaining supportive networks and supportive relationships. In addition, communication processes are the medium through which support is provided to individuals as they cope with everyday stresses and health crises. Supportive Networks and Relationships

While supportive communication is most traditionally thought to occur in dyads and group settings, supportive interactions never occur in a vacuum. Rather, they occur within the context of larger support networks (i.e., sets of overlapping relational linkages, Albrecht & Adelman, 1987; Penner, Dovidio, & Albrecht, 2000). In short, researchers have directed attention to determining the patterns of communication that are most likely to create health protective social environments and enhance pathways for access to health resources. Researchers also posit a reciprocal relationship between support networks and health behaviors; networks of supportive ties both impact and are impacted by such risk factors as smoking or substance abuse and preventive practices such as screening for early cancer detection and enhanced physical activity (Heaney & Israel, 1995). To describe these patterns, support networks are characterized by a series of structural indices including size (the number of members of the network, such as the number of support providers an individual perceives in his or her relational horizon) and density (the extent to which network members are connected to one another, usually expressed as a ratio of the number of actual ties to the number of theoretically possible ties).

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Multiplexity/uniplexity refers to the extent to which relational partners are more closely linked through multiple roles, such as whether two people are not only friends but also coworkers and neighbors. Uniplex ties are limited to links where partners have a weak tie or singular role relationship (such as teacher-student) and hence their relationship is more limited in context, scope and character. Finally, homogeneity/heterogeneity demonstrates the extent to which members of the support network are similar or dissimilar in terms of sociodemographic characteristics, communication styles and behaviors, personality predispositions, and character traits. Nurturing, caring, and tangible assistance are likely to be expected and provided more readily in closer, multiplex, dense relationships, which also likely carry a presumption of reciprocity of supportive behavior for the future. Close ties also help reinforce and regulate health behavior. The social feedback model (Hammer, 1983), for example, demonstrates how dense, overlapping linkages can influence the distribution of disease and infection by providing social pressure to behave in ways that prevent the spread of disease and infection (i.e., regulating eating behavior to curb obesity, providing resources to increase physical activity, encouraging healthful behaviors such as hand washing or safer sexual practices). Whereas close ties provide comfort, safety, and assistance with adhering to health regimens, weak ties are more open, with fewer obligatory norms (Albrecht & Adelman, 1987; Penner et al., 2000), while at the same time providing a sense of attachment to a wider community and a sense of place (e.g., Unger & Wandersman, 1985). Support from weak ties likely increases the diversity or heterogeneity of one’s contacts while increasing information, goods, and services. With greater diversity comes the opportunity for increased social comparison that can help motivate and model improved health behavior. Weaker ties also have lower temporal reliability and fewer rules and norms, thus enabling lower risk discussion of higher risk topics related to personal needs and behavioral practices (see Parks, Adelman, & Albrecht, 1987). However, it is important to recognize that both close and weak ties are necessary to offset the limitations of each. Probably most noteworthy is that weak ties may be less reliable in times of health need and offer less security and sense of belongingness, though close ties may be resistant to change and overly protective, even delaying recovery (e.g., McLeroy, DeVellis, DeVellis, Kaplan, & Toole, 1984). Supportive Communication and Coping

A distinct and complementary way in which communication is involved in social support and health focuses on the ways in which messages or conversations about stresses can help or hinder individual efforts at managing everyday stresses and health crises. This message (or conversation) level of analysis of social support focuses on the particular actions that network members or relational partners undertake with the intention of helping one another cope. The focus of research is on 1) understanding the conditions under which enacted support has beneficial outcomes; and 2) on identifying the features of enacted support that might make some attempts at assistance more beneficial than others. As Gottlieb (1983, p. 51) has observed, studies of support networks and studies of support messages each provide useful information about social support and health: The study of helping behaviors gives us an appreciation of the content of support, and the study of network structure tells us how the social environment may be patterned or organized as a flexible system for maintaining health and responding to crisis. One body of research that is relevant to an understanding of how conversations provide social support is the literature that has measured the frequency of enacted support and its effects on health and well-being. Enacted support may be defined simply as the things

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relational partners do and say with the intention of helping one another manage problems and stresses. Several widely used measures of enacted support assess the frequency of various kinds of assistance an individual has received (e.g., how often others have provided tangible, informational, emotional, and appraisal support during the last month). Examples include the Inventory of Socially Supportive Behaviors (Barrera, Sandler, & Ramsay, 1981), the Arizona Social Support Interview Schedule (Barrera, 1981), and the Stress Questionnaire (Dunkel-Schetter, Folkman, & Lazarus, 1987). The findings on the effects of enacted support on health and well-being vary widely and seem initially contradictory (for reviews, see Cohen & Wills, 1985; Cooper, 1986; Dunkel-Schetter & Bennett, 1990; Leppin & Schwarzer, 1990). First, some studies find that individuals with more enacted support benefit, although these effects are usually evident only for some types of support and under some types of conditions (e.g., Cooper, 1986; Dean, Kolody, Wood, & Ensel, 1989; Lin, Woefel, & Light, 1985; Pennix, Van Tilburg, Deeg, Kriegsman, Boeke, & Van Eijk, 1997; Sandler & Lakey, 1982; Wethington & Kessler, 1986). Second, some studies report the counterintuitive finding that individuals who receive more enacted support report higher levels of stress (Aneshensel & Frerichs, 1982; Barrera, 1981; Cohen & Hoberman, 1983; Sandler & Barrera, 1984) and higher levels of distress (Barrera, 1981; Cohen & Hoberman, 1983; Coyne, Aldwin, & Lazarus, 1981; Fiore, Becker, & Coppel, 1983; Husaini, Neff, Newbrough, & Seymour, 1982; Kauffman & Beehr, 1986). However, it is possible to interpret these findings in ways that are nonetheless consistent with an intuitive belief that overall, enacted support is beneficial in coping with stress. For example, a positive correlation between amount of enacted support and stress might reflect the mobilization of social support, such that as stress increases, individuals seek out more support from their social networks (Barrera, 1986). Similarly, a positive correlation between amount of support and distress might reflect a triage model (Barrera, 1986) in which those who experience the greatest distress elicit the greatest amounts of help and aid from others. These correlations might even be expected to vary over time: The experience of distress might initially elicit higher levels of support (triage) and then, at some later point, these helpful overtures might result in an alleviation of distress (Schwarzer & Leppin, 1991). Further, a reason for the mixed, null, and negative findings on the effects of enacted support is that measures of the sheer amount or frequency of support received overlook the quality and appropriateness of the support. One may receive information and advice about how to cope with a health problem and yet find that the advice is uninformed and therefore of little use. Worse yet, the advice others give might lead an individual to feel that others are critical of his or her own coping efforts or that others are condescending by providing information the individual already knows. Well-intentioned efforts at support could create more stress in the form of relational conflict or increased uncertainty. Another body of research involves observing messages or conversations in which support is enacted and identifying what features of the interaction are associated with participants’ evaluations of the interaction. These studies elicit from strangers or relational partners a discussion of some stress or problem and then ask respondents to rate the perceived supportiveness or helpfulness of the interaction. Trained coders identify different types of support that are enacted in these conversations so that researchers may test whether different types or features of support are associated with greater or lesser recipient satisfaction with support. In some studies, individuals who do not participate in a conversation either rate a videotape of a conversation or rate hypothetical messages for their helpfulness. This work generally shows that specific features of messages or conversations are linked with participants’ (and/or observers’) perceptions that support is in fact helpful. However,

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these studies have usually focused on university populations and everyday stresses, so it is unclear whether similar behavioral patterns are typical or effective for other populations and for more serious kinds of stresses or illness. Although there is evidence that everyday stresses do contribute to health and well-being (e.g., DeLongis, Coyne, Dakof, Folkman, & Lazarus, 1982), it is nonetheless important to examine how support interactions may be similar and different in the context of coping with life-threatening disease or the ongoing demands associated with care giving or managing one’s own chronic illness. In addition, the outcome measures in these studies are typically participant satisfaction or observer evaluation, so it is unclear whether and how these perceptions may be related to health and well-being. Although these various types of research on support messages and conversations have different foci and different strengths and limitations, several generalizations about the features of effective enacted support have begun to emerge from this body of research. First, there is evidence that problem-solving forms of enacted support (e.g., advice, information, tangible aid) and emotion-focused forms of enacted support (e.g., expressions of concern, belonging, and esteem) may be beneficial under different circumstances (Cutrona & Russell, 1990). As illustrated in some studies, tangible support is beneficial only for those with serious health problems or high levels of disability. Tangible support may have no systematic effect, or even create negative effects, for those whose problems or disability are less severe, perhaps because these individuals do not need support and therefore experience aid as critical or intrusive (e.g., Pennix et al., 1997; Wethington & Kessler, 1986). Furthermore, of these two broad types of support, emotion-focused support may be more likely from a cultural standpoint to be perceived positively in a wider variety of situations (e.g., Cutrona & Suhr, 1992, 1994). In their review of 17 interventions targeting various health behaviors and markers of health status, Cwikel and Israel (1987) concluded that provision of emotional support was associated with stronger treatment effects than informational support. In contrast, the benefits of problem-solving support may be more contingent on the recipient’s needs and resources, the provider’s expertise, and the quality of the information, advice, or aid offered. Although emotional support may be beneficial in a wide variety of circumstances, it is still possible to differentiate more and less effective forms. Burleson and his colleagues have found that person-centered messages, which acknowledge, elaborate, and legitimate the feelings of a distressed other, are rated by respondents as more sensitive and effective than messages that reject, deny, or attempt to draw attention away from feelings (see Burleson, 1994, for a review). Burleson and Goldsmith (1997) suggested this is because messages that encourage elaboration of feelings assist the distressed person in reappraising a stressful situation and his or her coping resources. Informational support also may be delivered in more or less effective ways. Goldsmith and colleagues have studied some of the factors that shape reactions to advice (Goldsmith, 1994, 1999, 2000; Goldsmith & Fitch, 1997; Goldsmith & MacGeorge, 2000). The theories of nondirective or client-centered helping that form the basis for many support interventions and crisis-training programs frequently discourage advice giving as a response to others in distress. However, among laypersons, advice is a common type of social support offered in response to another person’s problem. It may be helpful in providing new solutions and communicating the speaker’s concern and desire to help, but advice can also be perceived as criticism or “butting in” (Goldsmith & Fitch, 1997). Recipients’ reactions to advice may be affected by the degree to which advice employs face work: features of a message or conversation that communicate respect for a recipient’s autonomy and acceptance for the recipient’s identity. Goldsmith has found that the content that accompanies

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a piece of advice (Goldsmith, 1999) and the sequence in which advice is introduced into a conversation (Goldsmith, 2000) are both associated with the degree to which advice is experienced as face honoring or face threatening. In turn, respect for face is associated with the perceived helpfulness of advice. Another generalization that emerges from the research on support messages and conversations is the importance of relational coordination in achieving satisfactory support outcomes. Talking about problems and stresses is a potentially problematic type of conversation, in which participants may experience challenges in determining how to 1) introduce problem topics into conversation and when to transition to other, lighter topics (Jefferson, 1984); 2) respond to others’ painful self-disclosures or to questions that may solicit them (Coupland, Coupland, & Giles, 1991); and/or 3) signal a departure from conversational norms so that one person may engage in extended narratives about a problem he or she faces (Metts, Backhaus, & Kazoleas, 1995). Although many studies have focused on the qualities and effects of the support provided in an interaction, the conversational contributions of the support seeker/recipient may also influence outcomes. For example, there is variability in the ways in which support seekers ask for help (Goldsmith & Parks, 1990). The degree to which help is explicitly or directly requested may also influence whether and how effectively it is provided (Barbee & Cunningham, 1995; Cutrona & Russell, 1990; Dovidio & Gaertner, 1983; Rosen, 1983; Wills, 1983). In addition, the ways in which a support seeker presents his or her coping abilities can affect how others react and their willingness to interact (Coyne, 1976; Silver, Wortman, & Crofton, 1990). Similarly, when relational partners have different ways of coping with a shared stressor, this may reduce their satisfaction with one another’s support attempts (e.g., if one partner wishes to avoid discussion of a problem or emotion while the other wishes to engage in discussion, Barbee & Cunningham, 1995; Gottlieb & Wagner, 1991). Given the range of dynamics above, several researchers have called for a revised conceptualization of social support in close relationships. This new framing of support casts it as a more complex dyadic phenomenon, in which partners must not only cope with a stressor but also cope with the relational strains created by the stressor and with the need to coordinate their individual coping attempts (Cutrona, 1996; Lyons, Sullivan, Ritvo, & Coyne, 1995; O’Brien & DeLongis, 1997). IMPLICATIONS FOR RESEARCH AND PRACTICE Research

Social support will continue as an important research area for health communication scholars. Several broad directions include longitudinal studies that track the overtime changes in the stability/instability of community support networks in vulnerable populations, such as low-income, minority groups (see Roschelle, 1997), studies evaluating support program interventions such as those described in this chapter (below) under “practice” implications, and increased testing of general biobehavioral models that include supportive relationships and psychoneuroimmunology, necessitating interdisciplinary scientific initiatives (e.g., see Andersen, Kiecolt-Glaser, & Glaser, 1994). However, considering specific health communication constructs, three key areas include further inquiry regarding the process of transacting support, the relative efficacy of the placement or type of channel used (e.g., electronic or computer mediated), and the context of supportive interactions (and cultural codes/expectations). First, analysis of real-time supportive transactions, as related to health issues, is gaining increased attention.

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Coping with medical information, particularly when facing life-threatening illness, can be overwhelming and highly stressful for patients and their families. Even highly educated patients may have difficulty following complex medical terminology, treatment alternatives, and regimens as well as developing a cognitive map to navigate the maze of the health care system (Albrecht et al., 1999). Heightened anxiety may exacerbate the near inevitability of error, miscommunication, and misunderstanding (Mortensen, 1997; Taylor, 1992). Preliminary work shows that supportive messages from providers may actually enable cancer patients to cope with their lack of technical understanding of medical terms and facilitate their ability to move forward with treatment decisions in a positive frame of mind (Albrecht et al., 1999). The opportunity to view the ways in which supportive messages enable people to tolerate their uncertainty and manage the experience of miscommunication regarding informational content (see Mortensen, 1997) is worthy of careful descriptive and experimental study. Second, with the advent of the digital and electronic age, alternative channels for support are more available, more accessible, and can serve a variety of needs. Work by Walther and Boyd (in press) and others in this novel area shows that support groups on the Internet abound; the most well known are those serving cancer survivors, caregivers, and people with chronic diseases. The benefits of instant access, anonymity, and participatory control (as noted above) provide alternatives for people seeking support but also seeking to meet needs regarding, timing, privacy, and quantity of support. As a source of weak tie support (Albrecht & Adelman, 1987; Walther & Boyd, in press), computer-mediated channels provide a wellspring of research opportunities, particularly for investigating how electronic sources of support can transcend the problems with traditional, face-toface contact (Walther & Boyd, in press). From a health standpoint, research is needed to track the ways in which computer-mediated support can reach high-risk populations that perhaps have not been traditional users of the Internet (e.g., homeless persons, low-income pregnant women, the elderly). Electronic support is an opportunity for greater access to the health system, monitoring of conditions and disease, information, and importantly, a relief from isolation and loneliness. The extent to which this is feasible and effective is yet to be determined at a community level. Further investigation of situationally specific needs is also important for capturing the subtle and complex ways in which support may meet (or fail to meet) task, emotional, and relational needs (Goldsmith et al., 2000). Such analysis will also help with understanding the reasons why support attempts may falter in missing the needs of recipients. For example, head and neck cancer patients face mortality concerns as well as altered appearance and functional impairment. While perceptions of the availability of support are associated with lessened depression, received support is associated with more depressive symptoms (De Leeuw, De Graeff, Ros, Hordijk, Blijham, & Winnubst, 2000) suggesting that enacted support falls short of meeting the depth of their psychosocial needs. In another example, praise or other more obvious messages of support may lose impact over time in relationships where larger rewards/costs are at stake (i.e., health professionals in task environments). Instead, supervisors’ messages about innovation or new treatment strategies have correlated highly (e.g., r = .78) with global judgments of support (Albrecht & Halsey, 1992). Finally, the social/relational, physical, and temporal context in which support is sought, provided, and transacted is a key target for further study. Albrecht et al. (1994) noted that the findings on supportive communication are culturally bound to limited settings and contexts. However, health issues in particular are often defined in terms of cultural standards, meanings, and expectations. Tracking the mechanisms by which social support is

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transacted and understood to impact health outcomes across contexts has important theoretical and applied implications. In some Asian and Middle Eastern cultures, for example, the family network regulates health decision making and information exchange for the patient. The relative meaning of “supportive behavior” and “for whom” is a culturally framed practice. Historical contexts readily emerge as important, as well. Network studies concluding that tightly knit communities are uniformly problematic for change and promoting action are ignoring the evidence of the rescue networks among strangers and acquaintances in Denmark that mobilized overnight to save 8,000 Jews from deportation to death camps. Overlapping structural ties together with a strongly shared value system and communication code enabled spontaneous, prosocial, large-scale coordination (see Albrecht, 1994a). Such comparative cultural evidence also expands the “strength of weak ties” notion beyond what has been previously understood. Finally, motives for helping and for help seeking may well be mediated by cultural expectations and norms. In particular, much of what is known about social support regarding events of loss and trauma are based on studies of close relationships in the United States and has not expanded to the level of comparisons across individualistic versus collectivistic systems (e.g., Penner et al., 2000; Penner, 2000; Penner & Finkelstein, 1998; Penner, Rioux, & Tilman, 1997). Practice

The practical implications of social support are the basis for much of the widespread interest in this topic. In his early and influential essay, Cassel (1976) suggested it was likely to be more immediately feasible to attempt to improve and strengthen an individual’s social support rather than reduce the exposure to stress. Consequently, research on social support held great promise for improving preventive health services. As a result, there is a large body of descriptive and evaluation-based studies on various social support interventions. Many different kinds of programs are subsumed under this umbrella, from one-on-one peer support or problem-solving assistance to self-help and support groups, to programs that attempt to increase interaction within a neighborhood or apartment building, to public health campaigns that attempt to change attitudes toward seeking and providing help and aid. This body of work is obviously important in its own right in documenting the ways in which findings on social support may be applied to bring about improvement in individuals’ lives. It also has the potential to provide a testing ground for some of the causal relationships between support and health that are inferred from the kinds of studies that are largely correlational and often cross-sectional (Ell, 1984; Rook & Dooley, 1985). Despite the large number of intervention programs that have been reported in the literature, the evidence for their effectiveness is somewhat problematic. There is considerable evidence that support interventions can be effective (e.g., Cwikel & Israel, 1987; Gottlieb, 1983; Iacovino & Reesor, 1997; Wortman & Conway, 1985). However, many studies simply presume that social support is a good end and provide anecdotal reports of program success stories; even those studies that include an evaluation component often do not provide sufficiently rigorous tests of effects. In their 1987 review, Cwikel and Israel estimated that only 20 to 25% of social-network or social-support intervention studies used experimental designs that permit conclusive findings regarding the effectiveness of the intervention. As Baumgarten and her colleagues (1988) observed, research investigators, mental health planners, and members of the general public have strong beliefs concerning the ability of social support interventions to produce beneficial effects on well-being.

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These beliefs are founded on a modest empirical foundation and may persist because they embody values that many wish to foster. There are a number of reasons why it may be difficult to conduct rigorous evaluation of social-support interventions. One difficulty concerns the kinds of outcomes and evidence that constitute criteria for evaluation. Interventions may have greater impact on quality of life or recipient satisfaction than they do on policy-relevant outcomes such as institutionalization or reduced need for professional services (Gottlieb, 1985; Kiesler, 1985). In fact, to the extent that social-support interventions entail advocacy for the needs of support recipients, they may actually increase the use of services (Chapman & Pancoast, 1985). A related issue concerns how much is expected of support interventions. Those who are most disadvantaged in society may face such extreme environmental challenges that social support may only reduce the rate of health or economic decline or lessen the magnitude of stressful difficulties, rather than alleviating problems entirely. Another difficulty with evaluating intervention programs derives from potentially competing considerations: designing maximally effective programs versus isolating what features of the program contribute to effects. Individuals facing serious life stresses are likely to have multifaceted needs or support deficits that require multifaceted services or interventions. This makes it difficult to determine which components of an intervention are most effective and why. For example, the Lifestyle Heart Trial (Billings, Scherwitz, Sullivan, Sparler, & Ornish, 1996; Ornish, 1990; Ornish et al., 1990) has reported remarkable physiological and psychological effects, including some reversal of cardiovascular disease. However, the program includes multiple components in addition to the provision of support (e.g., smoking cessation, exercise, diet, stress management). The ability to separately test each of the various components of such a program may be limited by the number of volunteers who are willing to participate. There is also the ethical concern of randomly assigning participants to a unidimensional program in light of evidence that a multifaceted program saves lives. Given these complications, and the need for more research that provides evidence of intervention effectiveness, Cwikel and Israel (1987) provided the following suggestions for studies on social-support interventions: 1) perform randomized controlled trials and carefully conducted quasi-experimental designs, which are advantageous; 2) provide information on acceptance rates among volunteers, attendance, and drop-outs; 3) choose measures of effects that correspond to the psychological, physical, or behavioral changes intended; 4) measure change in social network characteristics and perceptions of social support to establish whether the intervention functioned as expected; 5) conduct long-term follow-up; and 6) describe and evaluate the actual intervention processes involved. The development and evaluation of social-support interventions has also been limited by the state of theory development in research. As Lanza and Revenson (1993) noted, research is at a stage where enough is known about support processes to design interventions, yet not enough to know how and why these interventions should work. Unless program designers know what it is about social support that works, and through what processes positive effects occur, it is difficult for them to target interventions and know what processes to facilitate (Heller & Rook, 1997; Kiesler, 1985). Rook and Dooley (1985) concluded this is perhaps the “most pressing issue requiring attention” (p. 23). ETHICAL CONSIDERATIONS

We find it difficult to separate the study of social support from a consideration of ethical issues. There is often an ethical motivation for choosing to study social-support, in that

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supportive communication, supportive relationships, and supportive networks embody some of what is best and most altruistic in human beings (Albrecht, 1994b). At the same time, study of the human needs that inspire social support should also force us to confront societal inequities and disparities in work conditions, access to health care, distribution of resources, and vulnerability to stress and disease (Pilisuk & Minkler, 1985). Indeed the origins of the social-support concept reflect both a moral agenda to improve life and some potentially questionable sociopolitical pressures to do so in ways that are inexpensive (e.g., by utilizing people’s own networks rather than costly professional or social services) and least likely to disrupt the status quo (e.g., by changing the individuals who suffer from stress rather than changing the environmental conditions that create it). Ethical questions are unavoidable when taking theory into practice and attempting to design interventions (Brownell & Shumaker, 1985). Is enough known about support to be able to design programs that will provide benefits commensurate to the expenditure of scarce resources, commitment of time and energy, and trust of research participants? Is enough known to be confident that selected interventions will do more good than harm and not unleash some of the potentially detrimental facets of support? Are interventions occurring not only at the level of individual agency and personal relationships but also at the larger structural levels that contribute to disparities in access, resources, stress, and vulnerability? Are efforts directed to areas of greatest need rather than to areas of greatest familiarity and convenience? Are interventions that are planned and directed by members of one sociocultural group sufficiently sensitive to the needs, values, and practices of other groups? Internet support groups for various life stresses and illnesses provide an interesting case study in which to raise many of these questions. Among academics, lay participants, and funding agencies there has been an explosion of enthusiasm for and research on social support provided in electronic media and several studies report beneficial effects of participation in these groups (e.g., Alemi et al., 1996; Bass, McClendon, Brennan, & McCarthy, 1998; Dunham et al., 1998; Hawkins et al., 1997; Heller, Roccoforte, Hsieh, Cook, & Pickett, 1997). Computer-mediated support groups may increase access to similar others for individuals who are physically disabled or who cope with rare diseases, reduce the stigma experienced in face-to-face interactions, increase comfort in disclosing difficult topics, and provide an opportunity to produce an uninterrupted narrative. However, just as early research on face-to-face support was characterized by optimism and then tempered by studies that documented negative effects of support, so too, research on Internet support groups is beginning to document negative interactions in Internet support groups, negative effects of excessive participation in Internet groups, and variability in the supportiveness of group dynamics (Krautet et al., 1998; Alexander, Peterson, & Hollingshead, in press). Computer-mediated support groups may suffer from unregulated negative or critical messages, provide inaccurate information, and decrease involvement in more multiplex face-to-face relationships. In addition to the need to collect more information on the relative effectiveness of computer-mediated support groups, as well as on the design features that optimize their benefits, several ethical questions should be addressed. For example, are Internet support resources widely accessible? If not, what are the implications of shifting research and funding priorities to a study of Internet support as compared to other kinds of interventions? Even as access to Internet support increases, is this a source likely to be considered credible and plausible among those populations with greatest need? Access to technology may not be the only barrier to implementing Internet support—sociocultural differences in the uses of and attitudes toward technology may also prevent Internet support groups from reaching

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some segments of society. What part of the enthusiasm for researching Internet support groups is motivated by the convenience of access and the researcher’s own familiarity with and use of the Internet? Does this detract from other interventions that may be more appropriate for other needs and in other populations? CONCLUSION

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14 Everyday Interpersonal Communication and Health Rebecca J. Welch Cline University of Florida

Health communication, as an area of theory, research, and practice, focuses on the relationships between communication and health, health attitudes and beliefs, and health behavior. Health communication research has focused more on formal than informal contexts. When investigating informal contexts, researchers have attended more to mass than to interpersonal communication. The purpose of this chapter is to address the “missing box,” the role of everyday interpersonal interaction as an arena of health communication. The chapter presents a rationale for exploring everyday interpersonal communication and health and offers social influence as a theoretical framework for that exploration. HIV/AIDS is argued a fruitful context for exploring the interrelationships of everyday interpersonal communication and health. Reviewing literature on the various roles of everyday interpersonal interaction and HIV/AIDS helps to clarify the potentially powerful and often neglected influence of everyday interaction on health and provides road signs for future research and practice. RATIONALE FOR EXPLORING EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH

A cursory overview of the status of health communication scholarship identifies patterns of phenomena that researchers have addressed and neglected. Initial explorations yield glimpses of the role of everyday interpersonal communication and health, hinting at the possibilities. Status of Health Communication Scholarship

Communication rapidly is becoming recognized as a significant factor in health care and promotion. Health communication has become a vital part of national public health efforts

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as evidenced by the recent development of offices of communication at the Centers for Disease Control and Prevention; the opening of the Health Communication and Informatics Research Branch at the National Cancer Institute in 1999; and the recognition of health communication as central to the “prevention agenda for the nation,” as identified in the Healthy People 2010 objectives (Office of Disease Prevention and Health Promotion, 2000). A critical look at the field points simultaneously to limitations and directions for future research. Health communication emphasizes some phenomena to the neglect of others. From a systemic perspective, health communication occurs in both formal and informal everyday contexts; however, formal contexts have been studied to the relative neglect of informal contexts. Large bodies of research address formal interpersonal contexts, specifically provider-client interaction (most frequently physician-patient interaction) (see, e.g., Cline & McKenzie, 1998; Thompson & Parrott, 2003). Similarly large bodies of research address formal attempts to change the public’s health behavior via health communication campaigns (with substantially more focus on the role of mass media than interpersonal communication, although researchers agree that interpersonal communication plays a powerful role in changing health behavior and must be addressed by campaigns in order to be successful) (e.g., Maibach & Parrott, 1995; Piotrow, Kincaid, Rimon, & Rinehart, 1997; Rice & Atkin, 2001). When health communication scholars have addressed the roles of everyday informal communication and incidental messages in influencing health, they attended more to mass than interpersonal communication. Research addresses the roles of television (e.g., Signorielli, 1998; Strasberger, 1995) and news (e.g., Dearing & Rogers, 1992; Kinsella, 1989), with less attention to other forms of popular culture (e.g., advertising, movies, billboards, musical lyrics, magazines) (e.g., Krishman, Durrah, & Winkler, 1997; Schooler, Basil, & Altman, 1996). When health communication is construed as occurring in a matrix of formal and informal communication contexts in which planned and incidental everyday messages abound, in both mediated and interpersonal forms, everyday interpersonal communication emerges as “the neglected box.” When addressed, this topic has been explored in fragments. Glimpses of the Role of Everyday Interpersonal Communication in Health

A wide array of illustrations, cutting across numerous health and disease contexts, provides glimpses of the significance of everyday interpersonal interaction in health. Just “plain talk” has health-related functions. Lynch (1985) and associates (Lynch & Rosch, 1990) investigated the influence of talk versus silence on physiological responses; simply talking changes one’s heart function, raising blood pressure and heart rate. Risk-taking behavior (e.g., taking drugs, drinking) may influence interpersonal communication. For example, Monahan and Lannutti (2000) studied alcohol as a “social lubricant” (p. 175) and found that drinking alcohol blocks otherwise existing behavioral inhibitions among women with low social self-esteem, resulting in greater self-disclosure. Everyday interaction plays a significant role in labeling illness. A mass psychogenic illness in a high school, resulting in the need for emergency treatment, initially was attributed to exposure to toxic gas but later found to be associated with social rather than medical or environmental conditions (Jones et al., 2000). In fact, deciding whether one is “ill,” and the timing of that labeling, often are influenced by social interaction (Mechanic, 1966).

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Everyday social networks may serve to disseminate health information or, conversely, to reinforce risk-taking behavior as a social norm. Tardy and Hale (1998) examined the role of informal interpersonal social networks among women in a toddlers’ play group where talk functioned to influence mothers’ health decision making. In contrast, Dorsey, Scherer, and Real (1999) found the frequency with which college students talk about drinking and potential consequences in nonpeer support networks correlates positively with drinking in excess. Such casual interaction may reinforce excessive drinking as a social norm. One commonly investigated phenomenon of everyday interpersonal communication with implications for health is helpful and unhelpful communication. Typically studied under the rubric of “social support” (Albrecht, Adelman, & Associates, 1987; Burleson, Albrecht, Goldsmith, & Sarason, 1994; see the chapter in this volume by Albrecht and Goldsmith), this area focuses on the functions of everyday interaction in helping people manage uncertainties (e.g., coping diagnosis, illness, treatment, recovery). Ironically, communication with those closest to us sometimes endangers well-being. Observers attribute much adolescent risk taking to peer influence (e.g., Alberts, MillerRassulo, & Hecht, 1991). In social contexts, communication can function to recruit others to engage in risky behavior, such as smoking or drug use (e.g., Ferguson et al., 1992; Trost, Langan, & Kellar-Guenther, 1995), to resist recruitment (e.g., Alberts, et al., 1991; Harrington, 1995), and to intervene to halt or reduce risk-taking behavior (Seibold & Thomas, 1994; Thomas & Seibold, 1995). Although explanations of adolescent risk taking tend to focus on peer influence, research indicts family communication as well. Communication with both peers and family members, in the forms of teasing and criticism, may influence body image, which, in turn, relates to eating disorders (e.g., Schwartz, Phares, Tantleff-Dunn, & Thompson, 1999). Understanding that everyday interpersonal communication plays a significant role in health behavior, health educators and public health professionals created interpersonal skills interventions for teens. Much of that advice can be simplified to “just say no.” Lewis (1994) criticized this approach, arguing that identity and relational concerns often supersede health-related intentions. Asking adolescents to simply refuse offers requires them to subvert their self-presentation or relational goals or at least to send a “mixedmessage.” Thus, typical health education fails to address how adolescents can negotiate multiple goals in the context of a social situation without violating social norms. Indeed, the diverse though scant literature on the role of everyday interpersonal communication in health reinforces the primacy of identity and relational goals over instrumental goals. For example, research indicates that sharing cigarettes can function as a way of meeting friends (Eckert, 1989). In refusal situations, although adolescents may be able to “just say no” to strangers (Alberts et al., 1991; Trost et al., 1999), doing so with friends and acquaintances is unlikely. In the latter case, adolescents prefer strategies that avoid rejecting the other person and have the potential to sustain the relationship. In interventions, as well, among both family members and peers, identity and relational goals tend to compete with instrumental goals (e.g., Seibold & Thomas, 1994; Thomas & Seibold, 1995). In summary, everyday interpersonal talk plays a significant role in health. Influences of everyday communication on health: (1) are anchored more in the social reality and social norms of participants than in health knowledge, health information, and traditionally defined health beliefs and behaviors; (2) are embedded in social situations that can be understood only through the realities of the participants; (3) may be positive or negative; and (4) may be planned or incidental. Taken as a whole, this potpourri points to social influence as a framework for organizing and advancing our understanding of everyday interpersonal communication and health.

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EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH AS A MATTER OF SOCIAL INFLUENCE

Neither traditional social psychological nor communication approaches to understanding social influence would have included the study of everyday interpersonal communication as it relates to health-related outcomes. Traditionally, social psychologists emphasized the unilateral function of social influence for control within group contexts (e.g., Moscovici, 1976) and characterized social influence as “a collection of processes” (Edwards, 1990, p. 2) (e.g., social conformity, attitude change and persuasion, power and authority, obedience, modeling, social norms) rather than a coherent unified whole. Traditionally, communication scholars cast social influence in the premises and language of “persuasion.” Persuasion was viewed as a linear process, embedded in a one-to-many framework and preoccupied with actions and issues, thus centered on instrumental goals and outcomes. However, over time, social influence evolved to include the role of “everyday” interpersonal communication. Contemporary Social Influence Theory

Contemporary social influence theory focuses on the social realities of participants with implications for understanding social influence messages and meanings from their viewpoint. Social psychologists contributed a focus on “social reality” and social norms; communication scholars offered the significance of messages, meanings, and a transactional perspective. Everyday social influence is understood to define social realities and social norms and to constrain interaction and behavior accordingly. Social psychologists cast social norms as “the key idea” or unifying construct in social influence (Turner, 1991, p. 2). From a contemporary perspective, social influence consists of “the processes whereby people agree or disagree about appropriate behaviour, form, maintain or change social norms and the social conditions that give rise to, and the effects of, such norms” (Turner, 1991, p. 2). The concept of “social norm” invokes a sense of “oughtness” as people justify actions in terms of moral obligations and rightness woven into a validating social reality. Communication scholars initially cast social influence in the premises and language of “persuasion,” but over time came to endorse three premises about social influence. First, they embraced interpersonal communication as persuasion under the rubric of compliance gaining (e.g., Miller, Boster, Roloff, & Seibold, 1987; Seibold, Cantrill, & Meyers, 1985). Second, communication scholars wrestled with juxtaposing traditional views of persuasion that implied linearity and intention, with premises about interpersonal communication as transactional and spontaneous. In turn, they questioned the necessity of intention and conscious awareness to socially influence (e.g., Miller et al., 1987). Berger and Douglas (1982) cautioned that many interactions can be characterized in terms of “mindlessness” (p. 43). Thus, the concept of “goal” as a conscious objective may be unnecessary in characterizing social influence. Third, communication scholars came to recognize the multifunctionality of communication. Clark and Delia (1979) identified three kinds of objectives explicitly or implicitly embedded in every communicative transaction: (1) instrumental objectives, seeking responses involving a task, (2) interpersonal objectives, involving establishment or maintenance of a relationship, and (3) identity objectives, related both to managing selfpresentation and facilitating the other’s identity management. Historically, instrumental or task-oriented goals have been “studied vigorously” (Newton & Burgoon, 1990, p. 479), while relational and identity objectives received scant attention. Thus, thinking regarding

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the study of social influence evolved to include interpersonal transactions, “mindless” behavior, and multiple functions. Social Reality and Social Norms: The Basis for Everyday Interaction

The concepts of socially constructed reality and social norms are central to understanding social influence. As both products of and templates for everyday interpersonal interaction, socially constructed realities provide blueprints for formulating meaning and guiding behavior. The Social Construction of Reality

Berger and Kellner (1964) and Berger and Luckmann (1966) cast everyday interaction as significant in creating a “shared reality.” “Everyday knowledge,” or what “everyone knows,” flows from continuously validating everyday interaction that creates “intersubjective” realities. Socially constructed realities are so unconsciously and continuously reinforced that they come to be experienced as “objective.” Socially constructed realities become the template for human behavior. Reality hardened by intersubjectivity makes “evident” what is “real” and, in turn, “appropriate” behavioral responses. That sense of “appropriateness” constitutes what we term social norms. Thus, everyday talk and everyday language play powerful roles in constructing realities and social norms for operating within those realities. The Centrality of Language. As Berger and colleagues (Berger, 1995; Berger & Bradac, 1982) argued, the only means for “knowing” anything is through experience and all experience is mediated through language. From a health perspective, social interaction provides the basis for the “reality” and “meanings” of such basic concepts as “health,” “illness,” “disease,” and “risk.” Within social contextual boundaries (whether family, peer group, or culture), social interaction yields social norms regarding the meaning of and reaction to specific health states and diseases. Language surrounding a particular disease not only labels it, but also frames the disease in larger perspectives and builds relationships with other concepts, yielding schema for the disease. Schema may be understood as networks of meaning; thus, the use of a single term, ostensibly to denote a particular pathology, comes to invoke expanded systems of meaning that go well beyond biomedicine to function as a blueprint for human behavior. Although some language use is “thoughtful,” (Berger & Bradac, 1982, p. 113), much of the time individuals pay minimal attention to highly repetitive everyday interaction. Berger and Bradac (1982) use the phrase “metaphors which people live by in the conduct of relationships” (p. 124) as they point to the role of language in providing the basis for behavior. Meanings We Live By: Metaphors as Behavioral Blueprints. “Metaphor is pervasive in everyday life” (Lakoff & Johnson, 1980, p. 3). In everyday talk, we constantly refer to one thing in terms of another; what we know about the second phenomenon provides some understanding of the first. The power of language rests in its metaphoric nature (e.g., Hawes, 1975); we do not process symbols as discrete phenomena, rather we use symbols in patterns, invoking whole systems of meanings beyond apparent referents. Thus, a single word can come to stand for a fully developed metaphoric blueprint for the situational reality and serve as a model to guide human action.

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The Meanings of Everyday Interaction vis-a-vis ` Health

Traditional approaches to social influence focused on intentional phenomena and instrumental goals to the exclusion of other