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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations SPEAKING OF HEALTH ASSESSING HEALTH COMMUNICATION STRATEGIES FOR DIVERSE POPULATIONS Committee on Communication for Behavior Change in the 21st Century: Improving the Health of Diverse Populations Board on Neuroscience and Behavioral Health INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by the Institute of Medicine. The views presented in this report are those of the Institute of Medicine Committee on Communication for Behavior Change in the 21st Century: Improving the Health of Diverse Populations and are not necessarily those of the funding agencies. Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Committee on Communication for Behavior Change in the 21st Century: Improving the Health of Diverse Populations. Speaking of health : assessing health communication strategies for diverse populations / Committee on Communication for Behavior Change in the 21st Century: Improving the Health of Diverse Populations, Board on Neuroscience and Behavioral Health, Institute of Medicine. p. ; cm. Includes bibliographical references and index. ISBN 0-309-07271-9 (alk. paper) 1. Communication in medicine. 2. Health promotion. [DNLM: 1. Health Promotion—methods. 2. Communication. 3. Cultural Diversity. 4. Health Services Accessibility. WA 590 I59s 2002] I. Title. R118 .I575 2002 613—dc21 2002012033 Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, N.W., Box 285, Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Printed in the United States of America. Copyright 2002 by the National Academy of Sciences. All rights reserved. COVER: Cindy Friedman, Susan Bershad, Mary Ivory, and Leslie Sullivan, Volunteers: The Stars of the House, 1997. 72′′ × 72′′. Textile. Philadelphia Ronald McDonald House. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Shaping the Future for Health
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations COMMITTEE ON COMMUNICATION FOR BEHAVIOR CHANGE IN THE 21ST CENTURY: IMPROVING THE HEALTH OF DIVERSE POPULATIONS SUSAN C. SCRIMSHAW (Chair), School of Public Health, University of Illinois at Chicago ALBERT BANDURA, Department of Psychology, Stanford University, California MARTIN FISHBEIN, The Annenberg School for Communication, University of Pennsylvania, Philadelphia LINDA GARRO, Department of Anthropology, University of California, Los Angeles ROBERT C. HORNIK, The Annenberg School for Communication, University of Pennsylvania, Philadelphia HOWARD LEVENTHAL, Center for Research on Health and Behavior, Rutgers, The State University of New Jersey, New Brunswick STEVEN REGESER LOPEZ, Department of Psychology, University of California, Los Angeles YOLANDA PARTIDA, Tomas Rivera Policy Institute, Pitzer College, Claremont, California BARBARA K. RIMER, Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland EVERETT ROGERS, Department of Communication and Journalism, University of New Mexico, Albuquerque GLORIAN SORENSEN, Harvard School of Public Health and Center for Community-Based Research, Dana-Farber Cancer Institute, Boston SHARYN SUTTON, Sutton Group, Washington, DC LAWRENCE WALLACK, School of Community Health, Portland State University, Oregon A. EUGENE WASHINGTON, Medical Effectiveness Research Center for Diverse Populations, University of California, San Francisco KENNETH B. WELLS (liaison to the Board on Neuroscience and Behavioral Health (NBH)), Neuropsychiatric Institute, University of California, Los Angeles
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Staff ANNE S. MAVOR, Study Director (since September 2001), Division of Behavioral and Social Sciences and Education (DBSSE), NRC CAROLE A. CHRVALA, Senior Program Officer (until April 2001), NBH, IOM TERRY C. PELLMAR, Director, Board on Neuroscience and Behavioral Health, IOM ALLISON L. FRIEDMAN, Research Assistant (until August 2001), NBH, IOM SUSAN R. MCCUTCHEN, Research Associate (since September 2001) DBSSE, NRC WENDY E. KEENAN, Senior Project Assistant (since September 2001), DBSSE, NRC WENDY BLANPIED, Project Assistant (between September 2000 and May 2001), NBH, IOM AMELIA MATHIS, Project Assistant (until May 2001), NBH, IOM LINDA V. LEONARD, Administrative Assistant (until September 2000), NBH, IOM LORA K. TAYLOR, Administrative Assistant (between October 2000 and June 2001), NBH, IOM CATHERINE PAIGE, Administrative Assistant (since October 2001), NBH, IOM
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations BOARD ON NEUROSCIENCE AND BEHAVIORAL HEALTH KENNETH B. WELLS (Chair), Neuropsychiatric Institute, University of California, Los Angeles, California NANCY E. ADLER, University of California, San Francisco, California PAUL S. APPELBAUM, University of Massachusetts Medical School, Worcester, Massachusetts WILLIAM E. BUNNEY, University of California, Irvine, California HOWARD FIELDS, University of California, San Francisco RICHARD G. FRANK, Harvard Medical School, Boston, Massachusetts SID GILMAN, University of Michigan, Ann Arbor HERBERT D. KLEBER, Columbia University and New York State Psychiatric Institute, New York, New York BEVERLY B. LONG, World Federation for Mental Health, Atlanta, Georgia KAREN MATTHEWS, University of Pittsburgh School of Medicine and Western Psychiatric Institute and Clinic, Pittsburgh, Pennsylvania BRUCE MCEWEN, The Rockefeller University, New York, New York KATHLEEN R. MERIKANGAS, Yale University, New Haven, Connecticut DAVID REISS, George Washington University Medical Center, Washington, D.C. RHONDA J. ROBINSON-BEALE, Blue Cross/Blue Shield, Detroit, Michigan CHARLES F. ZORUMSKI, Washington University School of Medicine, St. Louis, Missouri
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Staff TERRY C. PELLMAR, Director MICHAEL ABRAMS, Program Officer ADRIENNE STITH-BUTLER, Program Officer MILAP NOWRANGI, Research Assistant BRIAN MCQUILLAN, Senior Project Assistant ALLISON M. PANZER, Senior Project Assistant CATHERINE A. PAIGE, Administrative Assistant
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the NRC’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Noreen M. Clark, University of Michigan Karen Glanz, University of Hawaii Russell E. Glasgow, AMC Cancer Research Center Lawrence W. Green, Centers for Disease Control and Prevention Helen P. Hazuda, University of Texas Health Science Center at San Antonio Matthew Kreuter, Saint Louis University
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Thomas R. Prohaska, University of Illinois at Chicago William A. Smith, Academy for Educational Development Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by S. Leonard Syme, University of California, Berkeley. Appointed by the Institute of Medicine, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Chair’s Preface In 1993, McGinnis and Foege published a landmark article that reviewed the causes of death in the United States in 1990 in terms of both the listed causes (e.g., heart attack, homicide) and the “actual causes” or underlying factors (e.g., obesity, violence). Behavioral factors were implicated in 50 percent of all deaths for that year (McGinnis and Foege, 1993). The importance of behavior for health has long been emphasized by behavioral scientists, such as anthropologists, psychologists, and sociologists; by public health researchers and practitioners; and by clinicians in areas such as preventative medicine and maternal and child health. Until recently, however, the importance of behavior for health was minimized in favor of the dramatic impact of biomedical innovations, and perhaps their perceived ease of administration as well. In fact, many in the health care delivery field deemed behavior intractable, or at least very difficult to change, and thus they preferred to look for what Rene Dubos (1959) called the “magic bullets” of medicine. Usually, it is less costly both financially and in human terms to prevent than it is to treat. Type 2 diabetes provides an example. Both primary (prevention of onset) and secondary (prevention of
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations complications) prevention are preferable to the costs of treatment and the burden of the disease. Both types of prevention involve behavior change around smoking, diet, and exercise, and secondary prevention involves complex monitoring and medication behaviors as well. In some cases, behavioral interventions are the only option for prevention, with treatment very costly, and not always successful. An example is HIV/AIDS, where vaccines are still in the developmental stage, and the only prevention involves sometimes complex and difficult behaviors. Even where vaccines exist, such as for hepatitis B, behavioral interventions can be crucial in controlling the spread of the disease and in limiting the consequences of an infection. Technology alone is not enough. Despite the existence of a measles vaccine for the last 40 years of the 20th century, U.S. cities continued to experience occasional epidemics and some measles deaths into the 1990s. Even if there were “magic bullets” for all conditions, behavioral interventions would be needed to help motivate people to utilize them. Unfortunately, knowledge is rarely sufficient to change behavior, although knowledge is important. The risks of smoking and other tobacco use are well known, but that knowledge is seldom enough to get people to stop smoking or to keep people from initiating the behavior. There is evidence that smoking prevention and cessation programs work (Wasserman, 2001; Fiore et al., 2000), but they must be funded and applied. On one hand, human behavior is difficult to change, but on the other hand, it is constantly changing. One has only to witness the changing trends in food, clothing, and music in U.S. society, as well as the rapid increase in Internet use, to see behavioral change. Nor are those changes random. They are influenced by concerted efforts on the part of advertisers—and their investment of billions of dollars. During the past 20 years in particular, the health community began to work with the advertising community to develop behavior change strategies. Some of these were mass media campaigns, which will be discussed in this volume. Behavioral scientists working in public health also developed effective health
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations communication strategies that ranged from interventions for individuals to school- and work-based programs, to programs delivered through health care providers, to mass media and community-based campaigns. Most often, programs that used multiple interventions were found to have greatest effectiveness. As new media such as the Internet and computer games emerged, so did communication strategies that employed these media. Public health workers began to recognize the need to look at cultural factors when demographic and epidemiological data uncovered differences in risks of disease and death for various population subgroups. This came into sharper focus in the 1990s, as more attention was brought to bear on the disparities in health and illness among different ethnic, age, socioeconomic, gender, and other groups. The existence of these disparities meant that prevention and treatment efforts needed to be focused on those populations in most need, and questions had to be asked about the appropriateness and acceptability of these interventions. The categories of “race” and ethnicity, which permitted the identification of health disparities, are considered crude and inaccurate by anthropologists and others focusing on variations in groups. This volume critically examines how culture and ethnicity are defined and operationalized, and suggests more recent ways of describing identity, such as cultural processes and life experiences that shape both individuals and groups and lead to variations within groups that may affect health behaviors. Modifications to permit a more accurate understanding of the relationships among cultural processes, life experiences, and health behaviors, especially as these might relate to communication for health behavior change, are also discussed. Relevant behaviors vary from individual to individual, and are influenced by factors such as age, gender, economic options, social class, sexual orientation, life experiences, and cultural processes. Given this, a key question that this volume asks is: Will the same message content, medium, and format be received and understood equally by all? If not, how, when, and in what format should messages be focused for particular individuals or groups? To put
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations it another way, does it matter more for planning interventions that two women have never had mammograms or that these women are of two different ethnicities or ages? The committee charged with preparing this volume grappled with many related issues as well. From the start, the committee recognized that ethical issues arise when behavior change is involved, especially when strategies are modified to be culturally attractive and when persuasion strategies are used. This led to a consideration of ethical issues surrounding communication strategies. The committee struggled with theory. There are many behavior change theories, and no single theory explains all health behaviors. Many communication programs are designed and tested in the absence of theory. The challenge was to encourage use of theory, discuss aspects of the existing theories that best inform behavior change interventions for diverse populations, and identify gaps in theories. However, the committee did not produce a summary of existing theories because there are already many good sources for such reviews. Three exemplars were chosen to illustrate the issues and approaches as they relate to communication and diverse populations. Mammography was selected as an exemplar because having a mammogram is an occasional behavior—yearly, at most, for screening purposes—and one that has been the subject of hundreds of communication interventions, including many for diverse populations. There is a strong foundation of evidence-based interventions. Diabetes was chosen because it involves primary and secondary preventive behaviors that are complex and difficult and must be practiced daily to achieve benefit. The evidence base is much less robust than for mammography. For both mammography and diabetes, the committee assumed that attitudes and behaviors might vary both across and within populations. The third exemplar, mass communication, was chosen because of its ubiquity as a public health strategy. As a result, the committee deemed it important to examine the success of mass communication campaigns for diverse populations.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations The committee also chose to examine the new and emerging technologies that are dramatically changing the way we communicate about health and the way people obtain health information. The breadth of the topic assigned to the committee for consideration is remarkable. Thus, conscious choices had to be made to limit the scope of this volume. Time and space precluded further attention to many important questions raised about each topic. At the same time, many areas for future investigation are identified. In particular, the lack of theory in the design of many communications and the lack of research and evaluation related to costly interventions were a surprise. The fact that shaping interventions to conform to specific cultures is often done in the absence of evidence and with no evaluation is of concern. These findings emerged in part because the committee included disciplines that seldom converge on this topic. It was extremely valuable to have the range of disciplines and experiences represented on the committee. Many people contributed to this report. It was begun under the leadership of Carole Chrvala as study director, and Allison Friedman as research assistant. Wendy Keenan provided administrative support in the final project phase. Background papers by Nurit Guttman, David Gustafson, Michael McDonald, Tim Murphy, Charles Salmon, and Leslie Snyder provided very helpful ideas and materials. Terry Pellmar provided steady oversight and guidance, and key support at times when the task seemed overwhelming. Suzanne Stoiber believed in the importance of the topic, and was supportive throughout. Anne Mavor provided extraordinary leadership, support and very hard work. She stepped in as the second study director, and this report would not exist without her efforts. Finally, the committee members are grateful to the Institute of Medicine, and to the leadership and support of outgoing IOM President Ken Shine for the opportunity to begin the dialogue about communication for health behavior change in diverse populations. Susan C. Scrimshaw, Ph.D.
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations Contents EXECUTIVE SUMMARY 1 1 INTRODUCTION 11 Context, 14 Approach and Scope, 24 Organization of the Volume, 27 2 THEORY 28 What Does Theory Do?, 28 Factors Influencing Behavioral Performance: Key Constructs from Behavioral Theories, 30 Applying Behavior Change Theory, 43 Theories of Communication and Behavior Change: Key Constructs, 45 Implications of Theory for Health Communication with Diverse Populations, 68 Annex A:Overview of Key Concepts in Three Behavior Change Theories, 70 Annex B:Self-Regulation Models, 73
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations 3 HEALTH COMMUNICATION CAMPAIGNS EXEMPLAR 76 Introduction, 76 What Are Campaigns?, 82 The Logic of Segmentation and Its Relation to Diversity, 85 Adaptation of Health Communication Campaigns for Diverse Audiences, 96 Evidence That Different Approaches to Diversity in Campaigns Have Differential Success, 109 Conclusions, 120 Recommendations, 122 Annex: Changing Health Behaviors: The Mammography Case Study, 123 4 THE MAMMOGRAPHY EXEMPLAR 127 Why Mammography Is a Useful Exemplar, 127 The Effect of Breast Cancer on Diverse Populations, 130 The Role of Screening Mammography in the Early Detection of Breast Cancer, 132 Predictors of Mammography Use in Mainstream and Diverse Populations, 134 The Impact of Mammography-Enhancing Interventions on Diverse Populations, 140 Conclusions, 151 Recommendations, 153 5 THE DIABETES EXEMPLAR 154 Introduction, 154 Why Diabetes?, 155 Diabetes and Diverse Populations, 157 Recommendations, 175 6 NEW COMMUNICATION APPLICATIONS AND TECHNOLOGIES AND DIVERSE POPULATIONS 179 The Changing Health Communication Landscape, 179 Innovative Uses of Current Technologies, 181
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Speaking of Health: Assessing Health Communication Strategies for Diverse Populations New Health Communication Technologies, 193 Conclusions, 211 Communication: The Next Frontier, 215 Recommendations, 220 7 TOWARD A NEW DEFINITION OF DIVERSITY 224 Dimensions of Diversity, 224 Cultural Competence and Health Communication, 239 Ethics of Health Communication Interventions for Diverse Populations, 243 The Sociocultural Environment, 250 Summary and Conclusions, 252 Recommendations, 253 8 FINDINGS AND RECOMMENDATIONS 255 Introduction, 255 Overall Findings and Recommendations, 257 Theories of Communication and Health Behaviors, 260 Ethics, 262 Communication Campaigns, 264 New Communication Technology, 268 Diversity, 269 Infrastructure, 271 REFERENCES 273 APPENDIXES A Consultants 321 B Biographical Sketches 330 INDEX 339
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