Handbook of psychology: Health psychology [9, 2 ed.] 9780470619049, 9780470891926, 9781118282052, 9781118282571, 9781118286777

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Handbook of psychology: Health psychology [9, 2 ed.]
 9780470619049, 9780470891926, 9781118282052, 9781118282571, 9781118286777

Table of contents :
Cover
Front Matter
Title Page
Copyright
Editorial Board
Contents
Handbook of Psychology Preface
Volume Preface
Contributors
Part I Overview
Chapter 1 Health Psychology: Overview
What is "Health"?
Policy, Ideology, and Discourse
A Taxonomy for Interventions
Conclusions
References
Part II Causal and Mediating Psychosocial Factors
Chapter 2 Stressful Life Events
Stressful Life Events
Stress and Critical Life Events: Theoretical Perspectives
The Nature of Stressful Life Events and Disasters
Assessment of Stressful Life Events
Research Examples of Stressful Life Events
Stressful Life Events in the Light of Gender, Culture, Ethnicity, and Age
Future Directions
References
Chapter 3 Coping and Social Support
Coping
Theories of Coping
The Role of Coping in Health Behaviors and in the Management of Health Risk
Coping and Health Outcomes
Coping and Psychological Adaptation to Disease
Social Aspects of Coping
Challenges, Conclusions, and Future Directions
Social Support
Social Support and Health Outcomes
Social Support and Disease Recovery
Disease Progression and Mortality
Social Support and Psychological Outcomes
Mechanisms for the Effect of Social Support on Well-Being
Conclusions and Directions for Future Research
References
Chapter 4 Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions
Stress-Immune Bidirectional Pathways
Acute Versus Chronic Stress
Individual Psychological Differences
Social Relationships and Psychoneuroimmunology
Psychological Interventions
Conclusion
References
Part III Diseases and Disorders
Chapter 5 Asthma
Epidemiology and Health-Care Costs Related to Asthma
Evidence Basis for Psychological Theories Applied to Mechanisms Involved in Asthma
Psychological Factors Associated With Asthma
Medical Treatments for Asthma
Adherence
Psychosocial Factors Associated With Medical Treatments and Outcomes
Psychological Interventions for Asthma
Conclusions, Unanswered Questions, and Future Directions
References
Chapter 6 Understanding and Managing Obesity
Classification of Obesity
Epidemiology of Obesity
Consequences of Obesity
Psychosocial Consequences of Obesity
Economic Costs of Obesity
Contributors to Obesity
Treatment of Obesity
Lifestyle Interventions
Pharmacotherapy
Bariatric Surgery
Strategies to Improve Long-Term Outcome
Strategies for Maintaining Weight Loss: Findings from Correlational Studies
Strategies for Maintaining Weight Loss: Findings From Randomized Trials
Improving the Management of Obesity
Prevention of Obesity
Conclusion
References
Chapter 7 Nicotine Dependence
Introduction
Basic Mechanisms of Nicotine Addiction
Evidence for Genetic Influence on Nicotine Dependence Phenotypes in Humans Accumulates
Social, Psychological, and Environmental Risk Factors for Initiation and Maintenance of Tobacco Use
Recent Developments in the Multidimensional Assessment of Nicotine Dependence
Prevention and Treatment of Nicotine Dependence
Tobacco Prevention in Youth
Macroenvironmental Factors
Summary
References
Chapter 8 Arthritis and Musculoskeletal Conditions
Osteoarthritis (OA)
Rheumatoid Arthritis (RA)
Fibromyalgia (FM)
Stress-Sensitive Systems
Psychosocial Factors
Treatment
Conclusion
References
Chapter 9 Diabetes Mellitus
Diabetes Mellitus: A Primer
Diabetes and Stress
Diabetes and Depression
Diabetes and Social Support
Sleep Disturbance and Diabetes
Treating Diabetes: Psychosocial Interventions
Future Directions
References
Chapter 10 HIV/AIDS
Introduction
Overview of HIV Disease and Health Psychology
Primary Prevention
Secondary Prevention and HIV Care
Future Directions
Closing Comments
References
Chapter 11 Headaches
Introduction
Headache Classification and Diagnosis
Measurement of Headache Pain
Nonpharmacological Treatments for Headache
Biobehavioral Management of Headache
Headache Type, Frequency, and Chronicity
Comorbid Psychological Disorders
Treatment Algorithms
Treatment Format and Delivery
Conclusions
References
Chapter 12 Psychosocial Oncology
Cancer: A Basic Primer
Behavioral Risk Factors
Psychosocial Effects of Cancer
Psychosocial Interventions for Cancer Patients
Family and Caregiver Issues
Summary and Future Directions
References
Chapter 13 Chronic Pain
Unidimensional Conceptualizations of Chronic Pain
Behavioral Conceptualizations
Integrative, Multidimensional Model—Gate Control Theory
Psychology of Pain
An Integrated, Biopsychosocial Model
Assessment
Assessment of Functional Activities
Assessment of Coping and Psychosocial Adaptation to Pain
Assessment of Overt Expressions of Pain
Cognitive-Behavioral Perspective on the Treatment of Chronic Pain
Patient Uniformity Myth
Interdisciplinary Pain Rehabilitation
Concluding Comments
References
Chapter 14 Nature and Treatment of Insomnia
Introduction
Insomnia: Scope of the Problem
Evaluation of Sleep Complaints and Disorders
Treatments
Conclusions and Directions for Future Research
References
Chapter 15 Coronary Heart Disease and Hypertension
Coronary Heart Disease and Risk Factors
Treatment of CHD
Hypertension and Risk Factors
Treatment of Hypertension
Conclusion
References
Chapter 16 Gastrointestinal Diseases
Irritable Bowel Syndrome
Esophageal Disorders
Inflammatory Bowel Diseases
Conclusions and Future Directions
References
Chapter 17 Spinal Cord Injury
Anatomy and Classification of Spinal Cord Injury
Psychological Perspectives of SCI Rehabilitation and Research
Psychological Interventions
Concluding Remarks and Future Directions
References
Part IV Health Psychology Across the Life Span
Chapter 18 Child Health Psychology
Levels of Risk and Related Psychological Interventions
Universal Interventions
Selective Interventions
Indicated/Clinical Interventions
Conclusions
References
Chapter 19 Adolescent Health
Adolescent Development and Health
Salient Areas of Adolescent Health
Special Services for Adolescents
Future Directions
Summary
References
Chapter 20 Adult Development and Aging
Introduction
Personality Research
A New Look at Risk Factors and Dementia
Positive Emotions and Health
Implications of Population Aging
Concluding Thoughts and Emergent Issues
References
Chapter 21 Women's Health Psychology
Introduction
Physical Health Issues
Mental Health Issues
Stressful Reproductive Health Issues
Health Care
Social and Cultural Influences on Women's Health
Conclusions and Future Directions in Women's Health
References
Chapter 22 Primary Care Psychology
Primary Care Psychology
Historical Overview
Foundations of Primary Care Psychology: Challenges and Opportunities
Common Problems in Primary Care
Future Directions
References
Chapter 23 Sociocultural Aspects of Health Psychology
Introduction
Race-Ethnicity
Behavioral Treatment and Prevention Approaches for Ethnic Minorities
Gender
Psychosocial Factors
Biobehavioral Factors
Gender, Treatment, and Prevention Approaches
SES
Future Research Directions
Conclusion
References
Chapter 24 Occupational Health Psychology
The History of Occupational Health Psychology
Ecological Dimensions of Occupational Health Psychology
Preventive Health Management
Organizational Health
Training in Occupational Health Psychology
A Case Study
Future Directions in Occupational Health Psychology
References
Chapter 25 Complementary and Alternative Therapies
Western Systems of Healing
Eastern Systems of Healing
Other Common Healing Approaches
Future Directions
References
Author Index
Subject Index

Citation preview

HANDBOOK OF PSYCHOLOGY

HANDBOOK OF PSYCHOLOGY VOLUME 9: HEALTH PSYCHOLOGY

Second Edition

Volume Editors

ARTHUR M. NEZU, CHRISTINE MAGUTH NEZU, AND PAMELA A. GELLER Editor-in-Chief

IRVING B. WEINER

John Wiley & Sons, Inc.

This book is printed on acid-free paper. Copyright © 2013 by John Wiley & Sons, Inc. All rights reserved. Published by John Wiley & Sons, Inc., Hoboken, New Jersey. Published simultaneously in Canada. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Section 107 or 108 of the 1976 United States Copyright Act, without either the prior written permission of the Publisher, or authorization through payment of the appropriate per-copy fee to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers, MA 01923, (978) 750-8400, fax (978) 646-8600, or on the web at www.copyright.com. Requests to the Publisher for permission should be addressed to the Permissions Department, John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, (201) 748-6011, fax (201) 748-6008. Limit of Liability/Disclaimer of Warranty: While the publisher and author have used their best efforts in preparing this book, they make no representations or warranties with respect to the accuracy or completeness of the contents of this book and specifically disclaim any implied warranties of merchantability or fitness for a particular purpose. No warranty may be created or extended by sales representatives or written sales materials. The advice and strategies contained herein may not be suitable for your situation. You should consult with a professional where appropriate. Neither the publisher nor author shall be liable for any loss of profit or any other commercial damages, including but not limited to special, incidental, consequential, or other damages. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is not engaged in rendering professional services. If legal, accounting, medical, psychological, or any other expert assistance is required, the services of a competent professional person should be sought. The contents of this work are intended to further general scientific research, understanding, and discussion only and are not intended and should not be relied upon as recommending or promoting a specific method, diagnosis, or treatment by physicians for any particular patient. The publisher and the author make no representations or warranties with respect to the accuracy or completeness of the contents of this work and specifically disclaim all warranties, including without limitation any implied warranties of fitness for a particular purpose. In view of ongoing research, equipment modifications, changes in governmental regulations, and the constant flow of information relating to the use of medicines, equipment, and devices, the reader is urged to review and evaluate the information provided in the package insert or instructions for each medicine, equipment, or device for, among other things, any changes in the instructions or indication of usage and for added warnings and precautions. Readers should consult with a specialist where appropriate. The fact that an organization or Web site is referred to in this work as a citation and/or a potential source of further information does not mean that the author or the publisher endorses the information the organization or Web site may provide or recommendations it may make. Further, readers should be aware that Internet Web sites listed in this work may have changed or disappeared between when this work was written and when it is read. No warranty may be created or extended by any promotional statements for this work. Neither the publisher nor the author shall be liable for any damages arising herefrom. Designations used by companies to distinguish their products are often claimed as trademarks. In all instances where John Wiley & Sons, Inc. is aware of a claim, the product names appear in initial capital or all capital letters. Readers, however, should contact the appropriate companies for more complete information regarding trademarks and registration. For general information on our other products and services, please contact our Customer Care Department within the United States at (800) 762-2974, outside the United States at (317) 572-3993 or fax (317) 572-4002. Wiley publishes in a variety of print and electronic formats and by print-on-demand. Some material included with standard print versions of this book may not be included in e-books or in print-on-demand. If this book refers to media such as a CD or DVD that is not included in the version you purchased, you may download this material at http://booksupport.wiley.com. For more information about Wiley products, visit www.wiley.com. Library of Congress Cataloging-in-Publication Data: Handbook of psychology / Irving B. Weiner, editor-in-chief. — 2nd ed. v. cm. Includes bibliographical references and index. ISBN 978-0-470-61904-9 (set) — ISBN 978-0-470-89192-6 (cloth : v.9) – ISBN 978-1-118-28205-2 (ebk.) – ISBN 978-1-118-28257-1 (ebk.) – ISBN 978-1-118-28677-7 (ebk.) 1. Psychology. I. Weiner, Irving B. BF121.H213 2013 150—dc23 2012005833 Printed in the United States of America 10 9 8 7 6 5 4 3 2 1

Editorial Board

Volume 1 History of Psychology

Volume 5 Personality and Social Psychology

Donald K. Freedheim, PhD Case Western Reserve University Cleveland, Ohio

Howard Tennen, PhD University of Connecticut Health Center Farmington, Connecticut

Volume 2 Research Methods in Psychology

Jerry Suls, PhD University of Iowa Iowa City, Iowa

John A. Schinka, PhD University of South Florida Tampa, Florida

Volume 6 Developmental Psychology

Wayne F. Velicer, PhD University of Rhode Island Kingston, Rhode Island

Richard M. Lerner, PhD M. Ann Easterbrooks, PhD Jayanthi Mistry, PhD Tufts University Medford, Massachusetts

Volume 3 Behavioral Neuroscience

Volume 7 Educational Psychology

Randy J. Nelson, PhD Ohio State University Columbus, Ohio

William M. Reynolds, PhD Humboldt State University Arcata, California

Sheri J. Y. Mizumori, PhD University of Washington Seattle, Washington

Gloria E. Miller, PhD University of Denver Denver, Colorado

Volume 4 Experimental Psychology

Volume 8 Clinical Psychology

Alice F. Healy, PhD University of Colorado Boulder, Colorado

George Stricker, PhD Argosy University DC Arlington, Virginia

Robert W. Proctor, PhD Purdue University West Lafayette, Indiana

Thomas A. Widiger, PhD University of Kentucky Lexington, Kentucky

v

vi

Editorial Board

Volume 9 Health Psychology

Volume 11 Forensic Psychology

Arthur M. Nezu, PhD Christine Maguth Nezu, PhD Pamela A. Geller, PhD Drexel University Philadelphia, Pennsylvania

Randy K. Otto, PhD University of South Florida Tampa, Florida

Volume 10 Assessment Psychology

Volume 12 Industrial and Organizational Psychology

John R. Graham, PhD Kent State University Kent, Ohio

Neal W. Schmitt, PhD Michigan State University East Lansing, Michigan

Jack A. Naglieri, PhD University of Virginia Charlottesville, Virginia

Scott Highhouse, PhD Bowling Green State University Bowling Green, Ohio

Contents

Handbook of Psychology Preface Irving B. Weiner

xi

Volume Preface xiii Arthur M. Nezu, Christine Maguth Nezu, and Pamela A. Geller Contributors

I

xv

OVERVIEW 1

1

HEALTH PSYCHOLOGY: OVERVIEW

3

David F. Marks

II 2

CAUSAL AND MEDIATING PSYCHOSOCIAL FACTORS 27 STRESSFUL LIFE EVENTS

29

Ralf Schwarzer and Aleksandra Luszczynska

3

COPING AND SOCIAL SUPPORT

57

Melissa S. Xanthopoulos and Lauren C. Daniel

4

PSYCHONEUROIMMUNOLOGY: MECHANISMS, INDIVIDUAL DIFFERENCES, AND INTERVENTIONS Jeffrey R. Stowell, Theodore F. Robles, and Heidi S. Kane

III DISEASES AND DISORDERS 5

ASTHMA

103

105

Karen B. Schmaling

vii

79

viii

6

Contents

UNDERSTANDING AND MANAGING OBESITY

128

Joyce A. Corsica and Michael G. Perri

7

NICOTINE DEPENDENCE

149

Sean P. David, Jennifer B. McClure, and Gary E. Swan

8

ARTHRITIS AND MUSCULOSKELETAL CONDITIONS

182

Mary C. Davis, Heather M. Burke, Alex J. Zautra, and Shannon Stark

9

DIABETES MELLITUS

200

Arthur M. Nezu, Greer Raggio, Amy N. Evans, and Christine Maguth Nezu

10

HIV/AIDS 218 Michael P. Carey, Lori A. J. Scott-Sheldon, and Peter A. Vanable

11

HEADACHES

247

Frank Andrasik, C. Mark Sollars, Susan E. Walch, and Dawn C. Buse

12

PSYCHOSOCIAL ONCOLOGY

271

Arthur M. Nezu, Christine Maguth Nezu, Stephanie H. Felgoise, and Lauren M. Greenberg

13

CHRONIC PAIN 292 Dennis C. Turk and Hilary D. Wilson

14

NATURE AND TREATMENT OF INSOMNIA 318 Charles M. Morin, Jos´ee Savard, and Marie-Christine Ouellet

15

CORONARY HEART DISEASE AND HYPERTENSION

340

Charles F. Emery, Derek R. Anderson, and Christina L. Goodwin

16

GASTROINTESTINAL DISEASES

365

Laurie Keefer, Tiffany H. Taft, and Jennifer L. Kiebles

17

SPINAL CORD INJURY

389

Ann Marie Warren, Meredith L. C. Williamson, Norma A. Erosa, and Timothy R. Elliott

IV HEALTH PSYCHOLOGY ACROSS THE LIFE SPAN 18

CHILD HEALTH PSYCHOLOGY

413

Lamia P. Barakat, Matthew Hocking, and Anne E. Kazak

19

ADOLESCENT HEALTH

437

Sheridan Phillips and Sarah Edwards

411

Contents

20

ADULT DEVELOPMENT AND AGING 459 Ilene C. Siegler, Merrill F. Elias, Beverly H. Brummett, and Hayden B. Bosworth

21

WOMEN’S HEALTH PSYCHOLOGY

477

Pamela A. Geller, Alexandra R. Nelson, and Alexa Bonacquisti

22

PRIMARY CARE PSYCHOLOGY

512

Robert A. DiTomasso, Barbara A. Golden, Stacey C. Cahn, and Amelia G. Gradwell

23

SOCIOCULTURAL ASPECTS OF HEALTH PSYCHOLOGY 538 Keith E. Whitfield, Gerdi Weidner, Christopher L. Edwards, and Roland Thorpe

24

OCCUPATIONAL HEALTH PSYCHOLOGY

564

Marilyn Macik-Frey, James Campbell Quick, Lois E. Tetrick, Joyce Adkins, and Charles Klunder

25

COMPLEMENTARY AND ALTERNATIVE THERAPIES Christine Maguth Nezu, Minsun Lee, and Sarah Ricelli

Author Index

609

Subject Index

671

586

ix

Handbook of Psychology Preface

Two unifying threads run through the science of behavior. The first is a common history rooted in conceptual and empirical approaches to understanding the nature of behavior. The specific histories of all specialty areas in psychology trace their origins to the formulations of the classical philosophers and the early experimentalists, and appreciation for the historical evolution of psychology in all of its variations transcends identifying oneself as a particular kind of psychologist. Accordingly, Volume 1 in the Handbook , again edited by Donald Freedheim, is devoted to the History of Psychology as it emerged in many areas of scientific study and applied technology. A second unifying thread in psychology is a commitment to the development and utilization of research methods suitable for collecting and analyzing behavioral data. With attention both to specific procedures and to their application in particular settings, Volume 2, again edited by John Schinka and Wayne Velicer, addresses Research Methods in Psychology. Volumes 3 through 7 of the Handbook present the substantive content of psychological knowledge in five areas of study. Volume 3, which addressed Biological Psychology in the first edition, has in light of developments in the field been retitled in the second edition to cover Behavioral Neuroscience. Randy Nelson continues as editor of this volume and is joined by Sheri Mizumori as a new coeditor. Volume 4 concerns Experimental Psychology and is again edited by Alice Healy and Robert Proctor. Volume 5 on Personality and Social Psychology has been reorganized by two new co-editors, Howard Tennen and Jerry Suls. Volume 6 on Developmental Psychology is again edited by Richard Lerner, Ann Easterbrooks, and Jayanthi Mistry. William Reynolds and Gloria Miller continue as co-editors of Volume 7 on Educational Psychology.

The first edition of the 12-volume Handbook of Psychology was published in 2003 to provide a comprehensive overview of the current status and anticipated future directions of basic and applied psychology and to serve as a reference source and textbook for the ensuing decade. With 10 years having elapsed, and psychological knowledge and applications continuing to expand, the time has come for this second edition to appear. In addition to wellreferenced updating of the first edition content, this second edition of the Handbook reflects the fresh perspectives of some new volume editors, chapter authors, and subject areas. However, the conceptualization and organization of the Handbook , as stated next, remain the same. Psychologists commonly regard their discipline as the science of behavior, and the pursuits of behavioral scientists range from the natural sciences to the social sciences and embrace a wide variety of objects of investigation. Some psychologists have more in common with biologists than with most other psychologists, and some have more in common with sociologists than with most of their psychological colleagues. Some psychologists are interested primarily in the behavior of animals, some in the behavior of people, and others in the behavior of organizations. These and other dimensions of difference among psychological scientists are matched by equal if not greater heterogeneity among psychological practitioners, who apply a vast array of methods in many different settings to achieve highly varied purposes. This 12-volume Handbook of Psychology captures the breadth and diversity of psychology and encompasses interests and concerns shared by psychologists in all branches of the field. To this end, leading national and international scholars and practitioners have collaborated to produce 301 authoritative and detailed chapters covering all fundamental facets of the discipline.

xi

xii

Handbook of Psychology Preface

Volumes 8 through 12 address the application of psychological knowledge in five broad areas of professional practice. Thomas Widiger and George Stricker continue as co-editors of Volume 8 on Clinical Psychology. Volume 9 on Health Psychology is again co-edited by Arthur Nezu, Christine Nezu, and Pamela Geller. Continuing to co-edit Volume 10 on Assessment Psychology are John Graham and Jack Naglieri. Randy Otto joins the Editorial Board as the new editor of Volume 11 on Forensic Psychology. Also joining the Editorial Board are two new co-editors, Neal Schmitt and Scott Highhouse, who have reorganized Volume 12 on Industrial and Organizational Psychology. The Handbook of Psychology was prepared to educate and inform readers about the present state of psychological knowledge and about anticipated advances in behavioral science research and practice. To this end, the Handbook volumes address the needs and interests of three groups. First, for graduate students in behavioral science, the volumes provide advanced instruction in the basic concepts and methods that define the fields they cover, together with a review of current knowledge, core literature, and likely future directions. Second, in addition to serving as graduate textbooks, the volumes offer professional psychologists an opportunity to read and contemplate the views of distinguished colleagues concerning the central thrusts of research and the leading edges of practice

in their respective fields. Third, for psychologists seeking to become conversant with fields outside their own specialty and for persons outside of psychology seeking information about psychological matters, the Handbook volumes serve as a reference source for expanding their knowledge and directing them to additional sources in the literature. The preparation of this Handbook was made possible by the diligence and scholarly sophistication of 24 volume editors and co-editors who constituted the Editorial Board. As Editor-in-Chief, I want to thank each of these colleagues for the pleasure of their collaboration in this project. I compliment them for having recruited an outstanding cast of contributors to their volumes and then working closely with these authors to achieve chapters that will stand each in their own right as valuable contributions to the literature. Finally, I would like to thank Brittany White for her exemplary work as my administrator for our manuscript management system, and the editorial staff of John Wiley & Sons for encouraging and helping bring to fruition this second edition of the Handbook , particularly Patricia Rossi, Executive Editor, and Kara Borbely, Editorial Program Coordinator. Irving B. Weiner Tampa, Florida

Volume Preface

When we were asked to serve as editors of the second edition of the health psychology volume for the Handbook of Psychology, we were once again very excited to be part of a larger set of editors whose landmark, but daunting, task was to corral an impressive list of leading psychologists to chronicle “all of psychology.” In addition, we continue to believe that such a comprehensive text could be useful to a large contingency of individuals, including graduate psychology students, health psychology researchers interested in having up-to-date information, clinical health psychologists working with medical patients, and nonpsychology professionals (e.g., physicians, nurses) who wish to learn more about psychology’s contributions to health and health service delivery. Therefore, it was these four audiences that we continued to have in mind when we maintained the structure originated in the previous edition. Specifically, we continue to be interested in covering both conceptual and professional issues (Parts I and II, “Overview” and “Causal and Mediating Psychosocial Factors,” respectively), as well as a myriad of specific medical diseases (Part III, “Diseases and Disorders”), which focuses on major disease entities or medical problems and provides information concerning prevalence, psychosocial causal

factors, and treatment approaches. Because we view all phenomena as taking place within varying contexts, we also believe that health and health care need to be viewed within the context of varying developmental stages, hence the inclusion of Part IV, “Health Psychology Across the Life Span.” Because we believe there are additional contextual issues, such as gender, culture, and ethnicity, as well as emerging related issues in the field, we included these special topics. One entirely new chapter addresses primary care psychology. Although we provided wide latitude to the various authors in terms of chapter structure and content, we insisted on comprehensive and timely coverage for each topic. Our major goal is to chronicle the field since the first edition was published. We believe each set of authors did a magnificent job. To that end, we wish to thank them for their outstanding contributions. We also wish to thank Irv Weiner, Editor-in-Chief of the Handbook , for his indefatigable support, feedback, and advice concerning this volume. Arthur M. Nezu Christine Maguth Nezu Pamela A. Geller

xiii

Contributors

Heather M. Burke, PhD Department of Psychiatry University of California, San Francisco San Francisco, California

Joyce Adkins, PhD, MPH (USAF) Office of the Secretary of Defense Washington, DC Derek R. Anderson, MA Department of Psychology Ohio State University Columbus, Ohio

Dawn C. Buse, PhD Department of Neurology, Albert Einstein College of Medicine Department of Psychology, Ferkauf Graduate School of Psychology Yeshiva University Bronx, New York

Frank Andrasik, PhD Department of Psychology University of Memphis Memphis, Tennessee

Stacey C. Cahn, PhD Department of Psychology Philadelphia College of Osteopathic Medicine Philadelphia, Pennsylvania

Lamia P. Barakat, PhD Department of Pediatrics The Children’s Hospital of Philadelphia Perelman School of Medicine of the University of Pennsylvania Philadelphia, Pennsylvania

Michael P. Carey, PhD Centers for Behavioral and Preventive Medicine The Miriam Hospital and Brown University Providence, Rhode Island

Alexa Bonacquisti, MS Department of Psychology Drexel University Philadelphia, Pennsylvania

Joyce A. Corsica, PhD Department of Behavioral Sciences Rush University Medical Center Chicago, Illinois

Hayden B. Bosworth, PhD Center for Health Services Research in Primary Care Durham VAMC Departments of Medicine, Psychiatry and Behavioral Sciences, and School of Nursing Duke University Durham, North Carolina

Lauren C. Daniel, PhD Department of Oncology The Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Beverly H. Brummett, PhD Department of Psychiatry and Behavioral Sciences Behavioral Medicine Research Center Duke University Durham, North Carolina

Sean P. David, MD, SM, DPhil Center for Health Sciences SRI International (formerly Stanford Research Institute) Menlo Park, California xv

xvi

Contributors

Mary C. Davis, PhD Department of Psychology Arizona State University Tempe, Arizona Robert A. DiTomasso, PhD, ABPP Department of Psychology Philadelphia College of Osteopathic Medicine Philadelphia, Pennsylvania Christopher L. Edwards, PhD Department of Psychiatry Duke University Medical Center Durham, North Carolina Sarah Edwards, MD Division of Child and Adolescent Psychiatry, Department of Psychiatry University of Maryland School of Medicine Baltimore, Maryland Merrill F. Elias, PhD, MPH Department of Psychology and Graduate School of Biomedical Sciences The University of Maine Orono, Maine Timothy R. Elliott, PhD, ABPP Department of Educational Psychology Texas A&M University College Station, Texas Charles F. Emery, PhD Departments of Psychology and Internal Medicine, Institute for Behavioral Medicine Research Ohio State University Columbus, Ohio Norma A. Erosa, MS Department of Educational Psychology Texas A&M University College Station, Texas

Pamela A. Geller, PhD Departments of Psychology, Obstetrics & Gynecology, and Community Health & Prevention Drexel University Philadelphia, Pennsylvania Barbara A. Golden, PsyD, ABPP Department of Psychology Philadelphia College of Osteopathic Medicine Philadelphia, Pennsylvania Christina L. Goodwin, MS Department of Psychology Ohio State University Columbus, Ohio Amelia G. Gradwell, MS, NCC Department of Psychology Philadelphia College of Osteopathic Medicine Philadelphia, Pennsylvania Lauren M. Greenberg, MS Department of Psychology Drexel University Philadelphia, Pennsylvania Matthew Hocking, PhD Division of Oncology The Children’s Hospital of Philadelphia Philadelphia, Pennsylvania Heidi S. Kane, PhD Psychology Department University of California, Los Angeles Los Angeles, California Anne E. Kazak, PhD, ABPP Department of Pediatrics The Children’s Hospital of Philadelphia Perelman School of Medicine of the University of Pennsylvania Philadelphia, Pennsylvania

Amy N. Evans, BS Department of Psychology Drexel University Philadelphia, Pennsylvania

Laurie Keefer, PhD Departments of Medicine, Psychiatry, and Behavioral Sciences Northwestern University Chicago, Illinois

Stephanie H. Felgoise, PhD, ABPP Department of Psychology Philadelphia College of Osteopathic Medicine Philadelphia, Pennsylvania

Jennifer L. Kiebles, PhD Department of Medicine Northwestern University Chicago, Illinois

Contributors

Charles Klunder, PhD (USAF) Behavioral Analysis Service 59th Medical Wing Lackland Air Force Base, Texas

Marie-Christine Ouellet, PhD Universit´e Laval ´ Ecole de Psychologie Qu´ebec, Canada

Minsun Lee, MA Department of Psychology Drexel University Philadelphia, Pennsylvania

Michael G. Perri, PhD, ABPP Department of Clinical and Health Psychology University of Florida College of Public Health and Health Professions Gainesville, Florida

Aleksandra Luszczynska, PhD Warsaw School of Social Sciences and Humanities Wroclaw, Poland Marilyn Macik-Frey, PhD Department of Management, Marketing and Business Administration Nicholls State University Thibodaux, Louisiana David F. Marks, PhD Journal of Health Psychology London, United Kingdom Jennifer B. McClure, PhD Group Health Research Institute Group Health Cooperative Seattle, Washington Charles M. Morin, PhD Universit´e Laval ´ Ecole de Psychologie Qu´ebec, Canada Alexandra R. Nelson, PhD Department of Psychology Drexel University Philadelphia, Pennsylvania Arthur M. Nezu, PhD, ABPP Departments of Psychology, Medicine, and Community Health and Prevention Drexel University Philadelphia, Pennsylvania Christine Maguth Nezu, PhD, ABPP Departments of Psychology and Medicine Drexel University Philadelphia, Pennsylvania

Sheridan Phillips, PhD Division of Child and Adolescent Psychiatry, Department of Psychiatry University of Maryland School of Medicine Baltimore, Maryland James Campbell Quick, PhD Goolsby Leadership Academy University of Texas at Arlington Arlington, Texas Greer Raggio, MPH Department of Psychology Drexel University Philadelphia, Pennsylvania Sarah E. Ricelli, MS Department of Psychology Drexel University Philadelphia, Pennsylvania Theodore F. Robles, PhD Department of Psychology University of California, Los Angeles Los Angeles, California Jos´ee Savard, PhD Universit´e Laval ´ Ecole de Psychologie Qu´ebec, Canada Karen B. Schmaling, PhD Office of Academic Affairs and Department of Psychology Washington State University, Vancouver Vancouver, Washington Ralf Schwarzer, PhD Department of Psychology Freie Universit¨at Berlin Berlin, Germany

xvii

xviii

Contributors

Lori A. J. Scott-Sheldon, PhD Centers for Behavioral and Preventive Medicine The Miriam Hospital and Brown University Providence, Rhode Island

Peter A. Vanable, PhD Department of Psychology Syracuse University Syracuse, New York

Ilene C. Siegler, PhD, MPH Department of Psychiatry and Behavioral Sciences Department of Psychology and Neuroscience Duke University Durham, North Carolina

Susan E. Walch, PhD Department of Psychology University of West Florida Pensacola, Florida

C. Mark Sollars, MS Montefiore Headache Center Bronx, New York

Ann Marie Warren, PhD Division of Trauma Baylor University Medical Center Dallas, Texas

Shannon Stark, MA Department of Psychology Arizona State University Tempe, Arizona

Gerdi Weidner, PhD Department of Biology San Francisco State University San Francisco, California

Jeffrey R. Stowell, PhD Department of Psychology Eastern Illinois University Charleston, Illinois

Keith E. Whitfield, PhD Department of Psychology and Neuroscience Center for Biobehavioral and Social Aspects of Health Disparities Duke University Durham, North Carolina

Gary E. Swan, PhD Center for Health Sciences SRI International (formerly Stanford Research Institute) Menlo Park, California Tiffany H. Taft, PsyD Department of Medicine Northwestern University Chicago, Illinois Lois E. Tetrick, PhD Department of Psychology George Mason University Fairfax, Virginia Roland Thorpe, PhD Hopkins Center for Health Disparities Solutions Department of Health Policy and Management Johns Hopkins Bloomberg School of Public Health Baltimore, Maryland Dennis C. Turk, PhD Department of Anesthesiology and Pain Medicine University of Washington Seattle, Washington

Meredith Williamson, MS Department of Educational Psychology Texas A&M University College Station, Texas Hilary D. Wilson, PhD Department of Anesthesiology and Pain Medicine University of Washington Seattle, Washington Melissa S. Xanthopoulos, PhD Department of Child and Adolescent Psychiatry and Behavioral Sciences The Children’s Hospital of Philadelphia Philadelphia, Pennsylvania Alex J. Zautra, PhD Department of Psychology Arizona State University Tempe, Arizona

PART I

Overview

CHAPTER 1

Health Psychology: Overview DAVID F. MARKS

WHAT IS “HEALTH”? 3 POLICY, IDEOLOGY, AND DISCOURSE 5 A TAXONOMY FOR INTERVENTIONS 20

CONCLUSIONS 22 REFERENCES 22

WHAT IS “HEALTH”?

is an principle that remains relevant to modern constructions of health. In Chinese medical theory, the yin-yang balance concept is fundamental, along with microcosm– macrocosm correspondences (tien-jen-hsiang-ying) and harmony (t ‘iao-ho) (Kleinman & Lin, 1981). The concept that health consists of a balance of elements is a core feature across diverse cultures and times. In valuing balance, Western and Eastern cultures have not changed in 2,000 or 3,000 years. Health, illness, medicine, and health-care stories are plentiful in the mass media, especially about the dread diseases: cancer, HIV, and, more recently, obesity. The Internet spews out stories by the million on every healthrelated topic at the touch of a few keys. A popular search engine revealed a total of 1.24 billion items on “health.” This total may be compared to the lower figure of 1.19 billion items on “sex” and a meager 0.568 billion items on “football.” In spite of universal interest, there is not a single accepted definition of health. Experts and laypeople alike act as if they know what is meant by the term, and so there is no pressing need to define it. This lacuna of presumption is a source of confusion in the theory and policy of health care. The World Health Organization (Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, June 19–22, 1946) defined health as follows: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” This definition has obvious flaws. One must doubt whether any living person could ever reach “a state of complete physical, mental and social well-being.” More familiar to most people is the opposite state: incomplete

Before discussing health psychology, it is helpful to clarify what is meant by the term health. To understand the use of this term, we must take a dip into etymology, the study of the origin of words. Etymologists suggest that the word health originated in Old High German and Anglo-Saxon words meaning “whole,” “hale,” and “holy.” The etymology of heal has been traced to a Proto-IndoEuropean root kailo- (meaning “whole,” “uninjured,” or “of good omen”). In Old English, this became hælan (“to make whole, sound, and well”) and the Old English hal (“health”), the root of the adjectives “whole,” “hale,” and “holy” and the greetings “Hello,” “Hallo,” or “Hi.” Galen (C.E. 129–200), the early Roman physician, followed Hippocratic tradition in believing that hygieia (health) or euexia (soundness) occurs when a balance exists between the four humors: black bile, yellow bile, phlegm, and blood. Galen believed that the body’s constitution could be put out of equilibrium by excessive heat, cold, dryness, or wetness. Such imbalances might be caused by fatigue, insomnia, distress, anxiety, or food residues from eating the wrong quantity or quality of food. For example, an excess of black bile would cause melancholia. The theory was closely related to the theory of the four elements: earth, fire, water, and air (Table 1.1). Some current health beliefs are direct descendants of ancient Greek and Roman theories of medicine. In winter, when it is chilly and wet, we might worry about catching a cold, caused by a buildup of phlegm. In summer, we might worry about not drinking enough water to avoid becoming hot and bothered, or bad-tempered. The idea of health as an optimum balance between elements of life 3

4

Overview TABLE 1.1 Galen’s Theory of Humors Humor

Season

Element

Organ

Qualities

Personality

Characteristics

Blood Yellow bile Black bile Phlegm

Spring Summer Autumn Winter

Air Fire Earth Water

Liver Gallbladder Spleen Brain/lungs

Warm and moist Warm and dry Cold and dry Cold and moist

Sanguine Choleric Melancholic Phlegmatic

Courageous, hopeful, amorous Easily angered, bad-tempered Despondent, sleepless, irritable Calm, unemotional

physical, mental, and social well-being, with the presence of illness or infirmity. Apart from the idealism of the WHO definition, it missed key elements of health, elements that many believe to be fundamental. Health is a multidimensional state, which is complex, complicated, and nonreductive. Any health psychologist would insist that health has psychological aspects that must be included in any definition of health. Psychological processes such as cognition, imagination, volition, and emotion are all mediators of health experience. The adjective psychosocial is preferred to the more restrictive psychological, denoting that human behavior within social interaction influences the wellness–illness continuum (Cohen & Wills, 1985). Culture (e.g., Landrine & Klonoff, 1992) and economic status (e.g., Adler et al., 1994; Kawachi et al., 1997) are also mediators of health. Spirituality can significantly strengthen resilience in the face of illness, grief, and suffering (e.g., Thoresen, 1999). For many people, spirituality is an essential part of what it means to be human. Sawatzky, Ratner, and Chiu (2005) carried out an extensive literature search of 3,040 published reports, from which 51 studies were included in a final analysis. They reported a bivariate correlation between spirituality and quality of life of 0.34 (95% CI: 0.28–0.40). The authors concluded: “The implications of this study are mostly theoretical in nature and raise questions about the commonly assumed multidimensional conceptualization of quality of life” (p. 153). In one’s practice as a health psychologist, personal leanings as a believer or nonbeliever are not an issue; the patient is the focus, and the patient’s spiritual or religious needs can never be discounted. They can be a potent force in rehabilitation, therapy, or counseling. With these thoughts in mind, I offer the following definition of health: Health is a state of well-being with physical, mental, psychosocial, educational, economic, cultural, and spiritual aspects, not simply the absence of illness. The principle of compensation enables any one element that is relatively strong to compensate for lack in one or more other elements. If one or more of the elements is diminished, a person may yet experience a positive and sustainable state of health. This feature is illustrated in Figure 1.1 (see cases C and D). Thus balance and

100 80

Physical

60

Mental Psychosocial

40

Economic

20

Cultural Spiritual

0 A

B

C

D

A profile is produced for each of four hypothetical cases: (A) is a case who enjoys perfect health in all realms; (B) enjoys average health in all domains; (C) is physically well but has no social or spiritual support; (D) is in poor physical health but is mentally and spiritually strong.

Figure 1.1 A multidimensional theory of health

compensation are as important as the individual strength of any one particular element. Researchers have struggled with the possibility of measuring health by using a single universal scale of measurement. The complexity of the task is evidenced by the structure of scales developed to measure health. Four leading scales are: 1. The Nottingham Health Profile (Hunt, McKenna, McEwan, Williams, & Papp, 1981) scored 0–100 using six subscales for Physical Mobility, Sleep, Emotional Reactions, Energy, Social Isolation, and Pain. 2. The SF-36 (Ware & Sherbourne, 1992) score 100–0, using eight subscales for Physical Functioning, Role Physical, Role Emotional, Vitality, Mental Health, Social Functioning, Bodily Pain, and General Health Perceptions. 3. The COOP/WONCA (Nelson et al., 1987) scored 1–5, using six subscales for Physical Fitness, Feelings, Daily Activities, Social Activities, Change in Health, and Overall Health. 4. The EuroQol (Williams, 1990) scored 1–3, using five subscales for Mobility, Self-Care, Usual Activities, Pain/Discomfort, and Anxiety/Depression. Essink-Bot, Krabbe, Bonsel, and Aaronson (1997) factor-analyzed the four scales and derived factors that

Health Psychology: Overview

correspond to two of the seven dimensions in the present theory, physical health and mental health. Empirical support for the five remaining dimensions is available in multiple reviews and meta-analyses: psychosocial (e.g., Uchino, Uno, & Holt-Lunstad, 1999), economic status (e.g., Douglas, 1950; Marmot et al., 1991), educational (e.g., Gesteira, 1950), culture (e.g., Kleinman, Eisenberg, & Good, 1978; Office of Behavior and Social Science Research, 2004; Pelletier-Baillargeon & PelletierBaillargeon, 1968), and spirituality (e.g., Ellison & Fan, 2008; Thoresen, 1999). None of these mediators of health is a new discovery. We have been slow as a discipline to acknowledge their primary role in our construction of what it means to be healthy. The principle of compensation has a parallel in economics in the form of resource substitution: When wants and needs exceed the available resources, then a different resource will be used to fulfill those wants and needs. A similar principle operates between health and education, in which the absence of one resource is less harmful if other resources can substitute for it (Ross & Mirowsky, 2006). The balance of the seven ingredients in this recipe for health should be considered when attempting an account of a particular person’s state of health. The trends shown later in Figure 1.3 indicate that research on cultural differences in health behavior is gradually increasing. Continuation of this trend will enable theory and practice to converge more effectively in creating interventions relevant to those who most need them. In illustrating this point, Adams and Salter (2007) focused on African settings. The authors explored three culture-specific examples of health concerns from Africa: the prominent experience of personal enemies, epidemic outbreaks of genital-shrinking panic, and fears about sabotage of vaccines in immunization campaigns. One can envision totally different health psychologies emerging from diverse cultures. The health psychology of high-income countries, as currently formulated, could well prove almost irrelevant to cultures existing outside

5

of these zones. Within a country, widespread cultural, socioeconomic, and ethnic differences are evident in many aspects of health experience. Banthia, Moskowitz, Acree, and Folkman (2007) measured religiosity, prayer, physical symptoms, and quality of life in 155 U.S. caregivers. The findings indicated that prayer was significantly associated with fewer health symptoms and better quality of life only among less educated caregivers. This finding shows how a resource from one domain (spirituality) can compensate for a lack in another (education).

POLICY, IDEOLOGY, AND DISCOURSE Health psychology is concerned with the application of psychological knowledge and techniques to health, illness, and health care. The objective is to promote and maintain the well-being of individuals, communities, and populations. The field has grown rapidly, and health psychologists are in increasing demand in health care and medical settings. Although the primary focus has been clinical settings, interest is increasingly directed toward interventions for disease prevention, especially sexual health, obesity, alcoholism, and inactivity, which have joined smoking and stress as targets for health interventions. It is evident that everyday concepts of healthy living have advanced little since classical times. Current public health priorities and the associated interventions correlate with ancient concepts of the evils in society that need to be amended. Pope Gregory I was familiar with them all when, in A.D. 590, he defined the seven deadly sins (Table 1.2). A holistic tendency, embracing a biopsychosocial approach, is increasingly evident within health care. Health psychologists are working in collaboration with multidisciplinary teams at different levels of the health-care system to perform a variety of tasks: carrying out research; systematically reviewing research; helping to design, implement, and evaluate health interventions; training and

TABLE 1.2 Seven Deadly Sins, Common English Terms, Behavioral Counterparts, and Available Interventions

Sin

Pope Gregory I A.D. 590

Common English Term 2011

Associated Behavior/Symptoms

Intervention

1 2 3 4 5 6 7

luxuria gula avaritia acedia ira invidia superbia

lust, promiscuity gluttony greed laziness anger envy pride

Sexual addiction/STI/HIV Obesity/diabetes/cancer Type A/hypertension/stroke/MI Inactivity/sedentary lifestyle/obesity High blood pressure/cardiac arrest Lack of self-esteem Egotism

Contraception/sexual health/hygiene/rehab Dieting, rehab Stress management training, meditation, yoga Fitness coaches, activity programs, personal trainers CBT, anger management, self-help CBT, self-help [Not perceived as requiring treatment]

6

Overview

teaching; consultancy; providing and improving health services; carrying out health promotion; designing policy to improve services; and advocating social justice so that people and communities are enabled to act on their own terms. A community perspective, promoting strategies for social change at the local level that can facilitate improved health and well-being, complements a focus on individuals. Within the latter paradigm, a communitarian perspective to health work can generate alternative methods of interventions. In working toward social justice and the reduction of inequities, people’s rights to health and freedom from illness are viewed as a responsibility of planners, policy makers, and leaders of people wherever they may be (Marks, 2004). Individual and community approaches offer much potential for reducing health inequalities, but they both can also potentially distract attention from the broader structural causes of ill health. Health psychology training in masters and doctoral programs is available both within the community psychology framework and in mainstream health psychology (Marks, Sykes, & McKinley, 2003). I discuss the community approach later in this chapter. First, I deal with the dominant paradigm focused on the health of the individual. The dominant discourse within neoliberal health policy has been that of the autonomous individual in which each individual is an agent, responsible for his or her own health. The dominant ideology of individualism dictates that each person is motivated by self-interest to elevate his or her well-being with the least effort and resources possible. The cult of the individual spawned the notion of the responsible consumer (RC). The RC is an active processor of information and knowledge concerning health and illness and makes rational decisions and responsible choices to optimize well-being. The epitome of the RC is the hypothecated “anything in moderation” person who eats five-a-day, never smokes, drinks alcohol in moderation, exercises vigorously for at least 30 minutes three times a week, always uses a condom when having sex, and sleeps 8 hours a day. The stereotype of the more common irresponsible consumer (IC) is the so-called couch potato, who enjoys beer and cola, smokes, eats junk food, watches TV for many hours each day, and rarely exercises. Accordingly, responsibility for illness relating to personal lifestyle is seen as the fault of the individual, not an inevitable facet of a social, corporate, economic environment designed to maximize shareholder profits. Using a mixture of well-intentioned pleading, information, and advice, the traditional approach to health education aimed to persuade people to change their habits and

lifestyles. Information campaigns designed to sway consumers into healthier living were the order of the day. The Report of the 2000 Joint Committee on Health Education and Promotion Terminology defined health education as “any combination of planned learning experiences based on sound theories that provide individuals, groups, and communities the opportunity to acquire information and the skills needed to make quality health decisions” (Joint Committee on Terminology, 2001). In combination with policy and taxation, and against significant commercial forces, health education could claim some limited success over the past 50 years, such as the fall in lung cancer rates (Figure 1.2). Tobacco control has become a low but noteworthy benchmark for what may be achieved through consistent public policy, educational campaigns, and behavior change. However, the health gains made by this route were hard-won. The main public health call today is for a vigorous campaign to halt the obesity epidemic. If similar methods to those deployed for tobacco are used (i.e., voluntary controls, advertising restrictions, product labeling, health education), then it could take 50 to 70 years before obesity rates go into decline. Endemic toxicity diffuses all health determinants: physical, mental, psychosocial, educational, economic, cultural, and spiritual. Lack of exercise and a poor diet, helplessness, loneliness, illiteracy, poverty, alienation, and cynicism are enemies of health and well-being. Christakis and Fowler (2007) argue from studies of social networks that obesity spreads along social lines of influence. They evaluated a social network of 12,067 people from 1971 to 2003 and found clusters of obese persons at all time points. The clusters extended to three degrees of separation. A person’s chance of becoming obese was increased by 57% if he or she had a friend who had become obese in a given interval. Network phenomena appear to be relevant to the biologic and behavioral trait of obesity, and obesity appears to spread through social ties. Social imitation in networks could be as important a determinant of health as any individual decision to live a healthy life. In recent decades, appealing to the right-minded anything-in-moderation consumer has been prevalent throughout health care. The prescription to live well has always had a distinctively moral tone. Health promotion policy has been portrayed as a quasi-religious quest, a war against the deadly old sins of gluttony, laziness, and lust (Table 1.2). Discourse analysis of public health policy statements makes this fact all too clear. For example, Sykes, Willig, and Marks (2004) analyzed the text of the European Commission’s “Community Action Programme

Health Psychology: Overview

7

Age-adjusted Cancer Death Rates,* Males by Site, US, 1930–2008 100 Lung & bronchus

Rate per 100,000 male population

80

60

Prostate Colon & rectum

Stomach 40

20

Pancreas

Leukemia

Liver

0 1930

1935

1940

1945

1950

1955

1960

1965

1970

1975

1980

1985

1990

1995

2000

2005

*Per 100,000, age adjusted to the 2000 US standard population. Note: Due to changes in ICD coding, numerator information has changed over time. Rates for cancer of the liver, lung andbronchus, and colon and rectum are affected by these coding changes. Source: US Mortality Volumes 1930 to 1959, US Mortality Data 1960 to 2008,National Center for Health Statistics, Centers for Disease Control and Prevention. ©2012, American CancerSociety, Inc., Surveillance Research

Figure 1.2 Cancer deaths, U.S. males, 1930–2005 Reproduced by permission of the American Cancer Society.

on Health Promotion, Information, Education and Training 1996–2000.” There were plentiful examples of religious discourse within the program text. The program was constructed as insightful, almost enlightened, and on a mission or crusade with a message to spread. For the message to be spread effectively, believers had to be organized, with special inductions and training of practitioners to spread the message. Just like a religion, it was concerned with sharing and giving. In a similar vein as religious literature, there was a clear emphasis and distinction on what is good and what is bad. Those who partake in what is considered good will be given the best and reap the benefits in terms of good health and interventions that are based on scientific findings. Not wasting, patience, and control were clearly valued. However, the religion of health promotion was constructed as new and modern. It was different from traditional religions in that as long as followers believe in the principles of health promotion, differences can be accommodated. It was seen as inspiring rather than overprotective and not unconditionally generous. By contrast, the construction of health promotion as having an enemy drew on a military discourse. Health promotion experts were represented in the same way

politicians and diplomats handle potential threats of war. Experts meet to decide structure and strategies to combat the enemy. Members of the public were not invited to these meetings. Health promotion practitioners were then instructed as to the decisions, just like soldiers who are given their orders and commanded at the front line. The demise of the responsible consumer within health policy is imminent. Common observation and decades of research show that people are really pushed and pulled in different directions while exercising their so-called freedom of choice. Emotions and feelings are as important in making choices as cognition. The beneficial satisfaction of needs and wants must be balanced against perceived risks and costs. Health policy is beginning to acknowledge both the complexity of health and the power of the market. Witness the huge scale of the advertising industry: $279.6 billion or 2.0% of GDP in the United States alone (Coen Structured Advertising Expenditure Dataset, 2011). An inevitable compromise exists between what any individual wants and needs and the available means to satisfy those wants and needs (satisficers; Simon, 1956). The conditions for need satisfaction are seldom optimum. For many, they are chronically suboptimum.

8

Overview

It is accepted by government and health authorities that human activity is a reflection of the physical, psychosocial, and economic environment. The built environment, the sum total of objects placed in the natural world, dramatically influences health. The toxic environment propels people toward unhealthy behaviors, directly causing mortality and illness (Brownell & Fairburn, 1995). People become overweight and obese because they inhabit an obesogenic environment, which contains nasty, fatty, salty, sugary foods. For example, popular items like hot dogs and chicken nuggets, which are often made with mechanically recovered meat, can contain as little as 0% real meat. The ready availability of such low-cost items offers consumers little real choice when income levels are low and living costs, rents, and house prices are high. Mass degradation and poisoning of health begin early in life. It takes in all aspects of the environment, including every facet of the physical, mental, and psychosocial worlds. This concept is not a new one. Witness the works of Hogarth from the 18th century (Figure 1.3). Apparently, nothing is new: 245 years after Hogarth’s etching, Garbarino and Eckenrode (1997, p. 12) stated:

“Children’s social world has become poisonous, due to escalating violence, the potentially lethal consequences of sex, diminishing adult supervision, and growing child poverty.” Recent government policy documents in the United Kingdom indicate that reliance on consumers as responsible decision makers is waning but remains a primary strategy. The environment and corporations are being given a larger role. In Healthy Lives, Healthy People: Our Strategy for Public Health in England (2010), the government states: 2.29 Few of us consciously choose “good” or “bad” health. We all make personal choices about how we live and behave: what to eat, what to drink and how active to be. We all make trade-offs between feeling good now and the potential impact of this on our longerterm health. In many cases, moderation is often the key. 2.30 All capable adults are responsible for these very personal choices. At the same time, we do not have total control over our lives or the circumstances in

These engravings were in support of the Gin Act of 1751, which made the distillation of gin illegal in England. On the left-hand side, Beer Street shows a happy, hardworking city drinking good English beer. On the right, Gin Lane depicts the nightmare scenario of scrawny, lazy, careless people drinking gin, where a drunken mother is dropping her baby to its doom.

Figure 1.3

Beer Street and Gin Lane, a pair of 1751 engravings by William Hogarth

Health Psychology: Overview

which we live. A wide range of factors constrain and influence what we do, both positively and negatively. 2.31 The Government’s approach to improving health and wellbeing—relevant to both national and potential local actions—is therefore based on the following actions, which reflect the Coalition’s core values of freedom, fairness and responsibility. These are: • strengthening self-esteem, confidence and personal responsibility; • positively promoting ‘healthier’ behaviors and lifestyles; and • adapting the environment to make healthy choices easier. (p. 29) In this policy document, personal responsibility remains at the top of the agenda. The statement that “we do not have total control over our lives or the circumstances in which we live” is a small step forward, but, unfortunately, taking two steps back negates this. Only holistic public policies can lower the toxicity of the environment, and to declare otherwise is a cop-out. Yet large corporations are engaged as the new allies of health promotion in the 21st century. The U.K. government has enlisted the food industry, including McDonald’s and Kentucky Fried Chicken, among other corporations, to help to write policy on obesity, alcohol, and diet-related disease (McDonald’s, KFC and Pepsi, 2011). Processed food and drink manufacturers, including PepsiCo, Kellogg’s, Unilever, Mars, and Diageo, are contributing to five “responsibility deal” networks set up by Health Secretary Andrew Lansley. In a similar sponsorship arrangement to previous Olympic Games, McDonald’s and Coca-Cola are sponsoring the 2012 London Olympics. In the United States, there has been a similar shift in thinking: the anything-in-moderation philosophy of responsible consumption is no longer the principal foundation for public health interventions. The Surgeon General’s Vision for a Healthy and Fit Nation (Surgeon General, 2010) states: Interventions to prevent obesity should focus not only on personal behaviors and biological traits, but also on characteristics of the social and physical environments that offer or limit opportunities for positive health outcomes. Critical opportunities for interventions can occur in multiple settings: home, child care, school, work place, health care, and community. (p. 5)

In 21st-century health care, the opportunities for health psychological interventions to assist within the major settings has never been greater. But one must ask whether

9

the discipline is fit to meet these challenges. Alternative methods must be tried and tested if we are to make inroads into the massive scale of issues on the public health agenda. In the next sections, I discuss different health psychology approaches to public health work.

Health Psychology Trends In this section, I review trends in health psychology research and summarize bibliometric data concerning trends over time within some of the most prominent subfields in the discipline. Growth in Studies Over the past 20-plus years, there has been a remarkable growth in studies in health psychology. In each of the past few years, about 18,000 articles on health psychology have appeared in the peer-reviewed literature. The topic of stress continues to be of significant interest, with around 6,000 studies per year, and around 1,300 studies per year are concerned with coping. Following the zeitgeist, the concept of self-efficacy has been a leading topic for studies of health behavior. Self-efficacy is the belief that one is capable of performing in a specified manner to attain certain health goals, such as to quit smoking and to do more exercise. In other words, it is the belief that one can be fully rational or responsible in relation to the attainment of a health goal or behavior change. Figure 1.4 shows trends in specific types of studies over the period 1990–2009 categorized by topic: self-efficacy, cultural differences, poverty, spirituality, cognitive-behavioral therapy, motivational interviewing, and mindfulness-based stress control. The search included studies concerned with the main targets for health psychology interventions: drinking, smoking, pain, weight control, diet, exercise, and condom use. Another search looked for the topic psycho-oncology. All eight topics showed significant increases in peer-reviewed publications over the 20-year period, rising collectively 14-fold, from fewer than 100 studies in 1990 to about 1,400 studies per year by 2009. Studies concerned with poverty and health behavior showed a ninefold increase over 20 years, spirituality received a 21-fold increase, and CBT a 40-fold increase. Motivational interviewing and mindfulness were hardly even mentioned back in 1990, but together they generated around 200 studies concerning health behavior by 2009. Self-efficacy studies more than equaled the total number of the other seven topics combined.

10

Overview 1400 1200 Psycho-oncology

Number of Studies

1000

Mindfulness MI

800

CBT Spirituality

600

Poverty Cultural diffs

400

Self-efficacy

200

08 20

06 20

04 20

02 20

00 20

98 19

96 19

94 19

92 19

19

90

0

Year

The ISI Web of Knowledge database was searched using each main term: self-efficacy, cultural differences, poverty, spirituality, cognitive-behavioral therapy (CBT), motivational interviewing (MI), and mindfulness in combination with all of the health issues of drinking, smoking, pain, weight control, diet, exercise, or condoms. Another search counted the listings for psycho-oncology.

Figure 1.4

Trends in numbers of health psychology studies, 1990–2009

Cognitive-Behavioral Therapy The principles of cognitive therapy or cognitive-behavioral therapy (CBT) were developed 50 years ago (e.g., Beck, 1964). Its earliest applications in the domain of psychiatric disorders were later extended to the health psychology domain. Meta-analyses and randomized controlled trials have shown CBT to be an effective intervention with varying efficacy in the following areas: anger management (Beck & Fernandez, 1998), chronic pain (Morley, Eccleston, & Williams, 1999), bulimia nervosa (Ghaderi & Andersson, 1999), smoking (Sykes & Marks, 2001), irritable bowel syndrome (Lackner, Morley, Dowzer, Mesmer, & Hamilton, 2004), long-term glycemic control (Ismail, Winkley, & Rabe-Hesketh, 2004), sleep problems in older adults (Montgomery & Dennis, 2004), distress and pain in breast cancer patients (Tatrow & Montgomery, 2006), chronic fatigue syndrome (Malouff et al., 2008), group psychotherapy with HIV-infected individuals (Himelhoch, Medoff, & Oyeniyi, 2007), adult alcohol and illicit drug use (Magill & Ray, 2009), fibromyalgia symptoms (Glombiewski et al., 2010), and childhood and adolescent obesity (Kelly & Kirschenbaum, 2011). Motivational Interviewing Motivational interviewing is a method of counseling clients who require help with behavioral issues, a method that was

developed initially by Miller and Rolinick for people suffering from problem drinking (Rollnick & Miller, 1995). Motivational interviewing principles and techniques have been adapted to a variety of domains within the sphere of health psychology. Dunn, Deroo, and Rivara (2001) reviewed the effectiveness of brief behavioral interventions using adaptations of the principles and techniques of motivational interviewing (AMI) to four behavioral domains: substance abuse, smoking, HIV risk, and diet/exercise. The authors synthesized data from 29 randomized trials of MI interventions. Sixty percent of the 29 studies yielded at least one significant behavior change effect size, suggesting that MI is an effective substance abuse intervention method when used by clinicians who are nonspecialists in substance abuse treatment. The data were inadequate to judge the effect of MI in the other three domains. Burke, Arkowitz, and Menchola (2003) conducted a meta-analysis on controlled clinical trials investigating AMIs. They reported that AMIs yielded moderate effects (from .25 to .57) compared with no treatment and/or placebo for alcohol, drugs, and diet and exercise. Burke and colleagues reported that AMIs showed clinical impact, with 51% improvement rates, a 56% reduction in client drinking, and moderate effect sizes on social impact measures (d = 0.47). However, the results did not support the efficacy of AMIs for smoking or HIV-risk behaviors.

Health Psychology: Overview

Rubak, Sandboek, Lauritzen, and Christensen (2005) evaluated the effectiveness of AMIs in different disease domains. Their meta-analytic findings showed significant effects for AMIs for body mass index, total blood cholesterol, systolic blood pressure, blood alcohol concentration, and standard ethanol content, but combined effect estimates for cigarettes per day and for HbA(1C) were not significant. In approximately three of four studies, AMIs had a significant, clinically relevant effect, with an equal effect on physiological (72%) and psychological (75%) disorders. Interestingly from a health psychology viewpoint, psychologists and physicians obtained an effect in approximately 80% of the studies, while other healthcare providers obtained an effect in only 46% of studies. When using motivational interviewing in brief encounters of 15 minutes, 64% of the studies showed an effect, and more than one encounter with the patient was found to improve the effectiveness of AMIs. The findings of meta-analyses show the potential for MI, which “outperforms traditional advice giving in the treatment of a broad range of behavioral problems and diseases” (Rubak et al., 2005, p. 305). However, largescale studies are needed to justify expanding its use in primary and secondary health care. Mindfulness-Based Stress Reduction Mindfulness-based stress reduction (MBSR) is a structured group program employing mindfulness and meditation to alleviate suffering and pain experienced with physical, psychosomatic, and psychiatric disorders. The program aims to enhance moment-to-moment awareness of perceptible mental processes. MBSR assumes that greater awareness of conscious mental processes will provide more veridical perception, reduce negative affect, and improve coping and a sense of vitality. In the past three decades, a body of research findings has lent support to the use of MBSR in a variety of health psychology domains. Grossman, Niemann, Schmidt, and Walach (2004) performed a meta-analysis of studies related to MBSR. Twenty empirical studies met criteria of acceptable quality or relevance to be included in the meta-analysis. The acceptable studies covered a wide spectrum of clinical populations, including pain, cancer, heart disease, depression, and anxiety. The results suggested that MBSR “may help a broad range of individuals to cope with their clinical and nonclinical problems” (Grossman et al., 2004, p. 226). In a further meta-analysis, Grossman and colleagues (2007) found evidence supporting the use of MBSR as an intervention for fibromyalgia. Larger-scale studies are needed to compare the relative effectiveness of CBT, MBSR, and AMIs.

11

A Statistical Obsession A chronic problem throughout psychology is the persistent use of null hypothesis testing. In spite of the critical analyses by Jacob Cohen (1994), null hypothesis elimination with small samples remains the main methodological approach for theory testing in psychology. The power, validity, and generalizability of the huge majority of studies is questionable, yet we do not really know their true merit because of the uncertainties about representativeness, sampling, and statistical assumptions. Rarely are alternative—and arguably superior—approaches to theory testing utilized, for example, Bayesian methods or power analyses to assess the importance of effects rather than their statistical significance (G. Smedslund, 2008). There is chronic lack of power in published studies, which, for pragmatic reasons, generally employ samples that are too small to permit definite conclusions, a situation systematic reviews and meta-analyses are unable to mend. One wonders whether a reviewer in 20 years’ time will be able to say anything different about this topic. Scales Over the 20-year period 1990–2009, use of scales designed to measure health status has been dominated by three front-runners: the McGill Pain Questionnaire (Melzack, 1975), the Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983), and the SF-36 Health Survey (Brazier et al., 1992). The SF-36 is by far the most utilized scale in clinical research, accounting for around 50% of all clinical studies (Figure 1.5). Other scales used increasingly in clinical studies are (in no particular order) the Pediatric Quality of Life Inventory (Varni, Seid, & Rode, 1999), Multidimensional Health Locus of Control (Wallston, Wallston, & Devellis, 1978), Illness Perception Questionnaire (Weinman, Petrie, MossMorris, & Horne, 1996), Arthritis Impact Measurement Scales (Fagerstrom & Schneider, 1989; Meenan, Gertman, & Mason, 1980), Functional Living Index, Cancer (Schipper, Clinch, McMurray, & Levitt, 1984), Fibromyalgia Impact Questionnaire (Buckhardt, Clark, & Bennett, 1991), Functional Living Index (Schipper et al., 1984), Youth Risk Behavior Survey (Centers for Disease Control, 1991), Patient Health Questionnaire (Spitzer, Kroenke, Williams, & the Patient Health Questionnaire Primary Care Study Group, 1999), and the Spiritual Well-Being Scale (Peterman, Fitchett, Brady, Hernandez, & Cella, 2002). Scales to measure affect, stress, and/or coping are also in increasing use: the Social Readjustment Rating Scale (Holmes & Rahe, 1967), Impact of Event Scale (Horowitz, Wilner, & Alvarez, 1979), the Ways of Coping

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Overview

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Figure 1.5

Trends in numbers of health psychology studies using different research measures and methods, 1990–2009

Checklist (Folkman & Lazarus, 1980), the Daily Hassles and Uplifts Scale (Kanner, Coyne, Schaefer, & Lazarus, 1981), Positive and Negative Affect Scales (PANAS; Watson, Clark, & Tellegen, 1988), COPE (Carver, 1989), Clinician-Administered PTSD Scale (Blake et al., 1995), and PTSD Checklist (Blanchard, Jones-Alexander, Buckley, & Forneris, 1996). Theories Major research efforts have been devoted to Folkman and Lazarus’s (1980) transactional model of stress and to various scales intended to evaluate health- and stressrelevant variables. Theories receiving the most attention were the health belief model (Rosenstock, 1966), theory of reasoned action (Fishbein, 1967), theory of planned behavior (Ajzen, 1985), transtheoretical model (Prochaska & di Clemente, 1984), and the self-efficacy theory of Bandura (1977). Bandura (1977) theorized that “expectations of personal efficacy are derived from 4 principal sources of information: performance accomplishments, vicarious experience, verbal persuasion, and physiological states” (p. 191). These social cognition theories were designed to provide an account of how thoughts and beliefs influence health behavior and how human preparedness to act is a consequence of a complex of variables and/or stages. The social cognition paradigm neatly

mirrors the zeitgeist, which holds that human behavior is controlled by cognitive processes, beliefs, and attitudes internalized in the mind of a responsible consumer. As early as 1978, biting criticism was launched by J. Smedslund (1978), alleging that Bandura’s theory of selfefficacy was really a set of commonsense, tautologous theorems of the type “All people are humans” (for a reply, see Bandura, 1978). The ancient Greek, Dale Carnegie, power of positive thinking idea that “to achieve, you must believe” is as old as the hills. A search on www .amazon.com yielded no fewer than 118 self-help books with a title similar to this. Self-efficacy enshrines within social cognitive psychology this ancient homily. Ajzen’s (1985) theory of planned behavior (TPB) states that intentions to change a behavior are determined by a combination of attitude toward the behavior, subjective norms, and perceived behavioral control. The concept of perceived behavioral control originates from self-efficacy theory. In 2011, the ISI Web of Science database listed almost 3,000 articles mentioning the TPB, with the number per year rising continuously over the period 1978 to 2009. In spite of its undoubted popularity, the social cognition paradigm has been the subject to mounting criticism on methodological or theoretical grounds (Ogden, 2003). The TPB in particular has been challenged (e.g.,

Health Psychology: Overview

Brickell, Chatzisarantis, & Pretty, 2006; French, Cooke, Mclean, Williams, & Sutton, 2007; Mulholland & van Wersch, 2007), and systematic reviews have demonstrated only modest levels of empirical support (e.g., Armitage & Arden, 2007; Christian, Armitage, & Abrams, 2007). Armitage and Conner (2001) carried out a meta-analysis from a database of 185 studies published up to the end of 1997. Their analysis indicated that the TPB accounted for only 27% and 39%, respectively, of the variance in behavior and intention. Similarly, Webb and Sheeran’s (2006) meta-analysis showed that medium-to-large changes in intention were leading to only small-to-medium changes in behavior. The findings from meta-analysis suggest three main conclusions: (1) the TPB and similar theories provide an inadequate account of health and illness behavior; (2) in spite of the logic that intention causally precedes behavior, the intention–behavior gap remains a stubborn fact in health behavior; and (3) alternative approaches that consider non-social-cognitive factors in human choice, including emotions and feelings, are necessary. Critics of social cognition theory have indicated several reasons why they have performed so poorly. Weinstein (1993, p. 324) summarized the then-current state of health behavior research as follows: Despite a large empirical literature, there is still no consensus that certain models of health behavior are more accurate than others, that certain variables are more influential than others, or that certain behaviors or situations are understood better than others.

As already noted, some critics claim that social cognition theories are tautological and irrefutable (e.g., G. Smedslund, 2000; J. Smedslund, 1978). If valid, no real progress in understanding has followed or ever will follow the social-cognitive route. In a damning indictment, critical health psychologists Murray and Campbell (2003, p. 231) commented that social cognition theories have even hindered rather than helped efforts to stop the spread of AIDS: Through persistently directing attention towards the individual level of analysis in explaining health-related behaviors, health psychology has contributed to masking the role of economic, political and symbolic social inequalities in patterns of ill-health, both globally and within particular countries. Thus, while some health psychologists may laud the innovativeness of subtle changes to the basic social cognition models of health behavior it can be argued that these very models may actually be hindering attempts at improving health.

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The Community Perspective Looking for alternative frameworks for health psychology is easier said than done. I previously advocated more consideration of the cultural, sociopolitical, and economic conditions setting the context for individual health experience and behavior (Marks, 1996, p. 7). As the trends in Figure 1.4 indicate, cultural differences, poverty, and spirituality are being increasingly studied, although to nothing like the same extent as self-efficacy. New theoretical concepts and ways of working are necessary if the global problems of AIDS, obesity, and tobacco are to be solved. There are simply insufficient health workers to provide individual care at the point of need. A community perspective offers the possibility of making the community the target for intervention rather than the individual. A helpful framework for a segment of community health work is that proposed by Lewin (1947), which has seen a revival in the form of participant action research (PAR) (Figure 1.6). Reflecting the importance of social and economic structures, over the past decade, there has been increasing interest in developing community health psychology. This has been defined as “the theory and method of working with communities to combat disease and to promote health” (Campbell & Murray, 2004, p. 187). The accommodation approach focuses on processes within the community; the more critical approach aims to connect intracommunity processes with the broader sociopolitical context. A primary aim of critical community psychologists is: to promote analysis and action that challenges the restrictions imposed by exploitative economic and political relationships and dominant systems of knowledge production, often aligning themselves with broad democratic movements to challenge the social inequalities which flourish under global capitalism. (Campbell & Murray, 2004, p. 190)

In devising strategies for social and community change, health psychologists are becoming more sophisticated about the various dimensions of communities and processes involved in encouraging participation in community activities. The activist orientation distinguishes it from other forms of community-based health interventions. McLeroy, Norton, Kegler, Burdine, and Sumaya (2003) distinguish four different forms of communitybased health promotion: community as setting, community as target, community as agent, and community as resource. In this section, I illustrate the flavor of the community paradigm with three international examples of interventions in the sexual health domain.

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Overview Frontiers in Group Dynamics PLANNING, FACT-FINDING AND EXECUTIVE

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Figure 1.6 One model for community health psychology, participatory action research, can be traced back to Lewinian action research, described by Lewin (1947, pp. 147–153), which contains a diagram (Fig. 3) of the intervention that occurs in a cycle.

Community-level approaches to sexual health mobilize skills and resources from communities who themselves can see that changes are necessary and who are willing to develop strategies for making those changes. Communities may consist of ethnic groups, neighborhood groups, or groups with particular social identities, such as men who have sex with men. The top-down approach of theoretical models, government-led programs, and campaigns are rejected in favor of bottom-up approaches based on personal relationships and social networks. The concept that there needs to be adolescent participation in the promotion of their sexual and reproductive health is enjoying widespread popularity as part of a broader shift toward participatory health promotion. Key policy statements by the World Health Organization (1997) endorse a participatory approach at the level of whole communities. The community approach is highly flexible and adapted from place to place, according to the particular community issues and needs. Three examples of community approaches to sexual health follow.

Sexual Health Promotion in Peru Ramella and Bravo de la Cruz (2000) describe an adolescent sexual health promotion project in Peru called Salud Reproductiva para Adolescentes (SaRA), which was implemented in 15 communities in deprived rural and urban/marginal areas in the coastal, Andean, and jungle regions of Peru. The project operated at grassroots level in collaboration with existing community networks. SaRA’s goal is to encourage positive changes in adolescent sexual health by working with relevant social actors and social networks. In each of the communities, the project set up networks in the form of clubs. The clubs were created in open encounters jointly arranged by the SaRA team and local community networks. The clubs organize a range of social activities designed to nurture the network of adolescents and to embed it within its community by seeking collaboration and exchange with other social agents. Adolescents decide for themselves the nature and content of events, while the SaRA team facilitates assistance and collaboration from locally available services.

Health Psychology: Overview

Clubs were given access to video cameras, photographic cameras, tape recorders, and paper and pencil. The clubs were thus encouraged to make use of these technologies in creating accounts of their activities, such as a football match, a visit to a health center, or a salsa party. The stories open up opportunities for adolescents to talk about pressing issues they feel and create a means of expression that can feedback into the adolescents’ reflections and understanding of themselves. These stories contribute to SaRA’s goal of promoting sexual health while helping adolescents to improve their communication skills and competence, which are central aspects of sexual health. In all but four of these communities, the clubs established themselves as key social players by becoming a social center for local adolescents. A second output indicator was the adolescent club members’ increased use of locally available health services and products. A third output was a substantial decrease (90%) in the level of unintended pregnancies among adolescent girls in SaRA. The project is ongoing. HIV/AIDS Stigma Amelioration in South Africa The leader of this project, Campbell, talks about HIV/ AIDS stigma with the concept of dying twice: “If you have AIDS you die twice because the first thing that kills you is being lonely when everyone discriminates against you, even your family members. The second one is the actual death” (a young high school learner, quoted by Campbell et al., 2007). Addressing this issue from a psychosocial perspective within the community, Campbell and colleagues present a stigma amelioration model (SMA) designed to reduce HIV/AIDS stigma. They argue that stigma is a key driver of the epidemic “through the role it plays in undermining the ability of individuals, families and societies to protect themselves from HIV and to provide assistance to those affected by AIDS” (p. 404). The authors present a multilevel model of the roots of AIDS stigma in two South African communities. The SMA model highlights the complex interplay of psychosocial factors, which generate stigma around AIDS. This project was carried out in two communities in KwaZulu, Natal, South Africa, in Entabeni, a rural community in a periurban area near Durban, where around 40% of pregnant women are HIV-positive. This area is a typical Zulu-speaking community in a patriarchal society, with high unemployment and poverty. In 2004, when the study was carried out, antiretroviral drugs were not available to the study communities. HIV/AIDS-related community organizations invited the researchers to assist them in acquiring more understanding of the social factors

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that were facilitating or hindering their work. Stigma is an obstacle to AIDS care in these African communities: Families hide the person away from the community once they discover they have AIDS. They take him away from the community and we end up not knowing what has happened to that person. They don’t even allow him or her to go to the clinic or to seek out any help at all. (young woman, youth leader, quoted in Campbell et al., 2007)

Health workers reported that it was hard to persuade people to apply for AIDS grants when they kept their HIV status secret. Stigma might even deter people from ask for ARVT drugs once drug treatment took place. One hundred and twenty semistructured interviews, as well as focus groups, explored community responses to HIV/AIDS. The main drivers of stigma were found to be fear; lack of social spaces to engage in dialogue about HIV/AIDS; the link between HIV/AIDS, sexual moralities, and the control of women and young people; the lack of adequate HIV/AIDS management services; the way in which poverty shaped people’s reactions to HIV/AIDS; and availability and relevance of AIDS-related information. Campbell et al., 2007 suggested four methods for ameliorating stigma in these regions: 1. Generate debate and discussion about how stigma fuels the fear that facilitates the epidemic—with many people too frightened to seek out information about how to protect their sexual health through the creation of social contexts where people with AIDS are treated with care, love, and respect. 2. Discuss stigma problems in group contexts, to help to empower people to identify their strengths, abilities, and resources. 3. Promote community ownership of the HIV problem to help bring about a sense of identification between community members and those who are suffering from HIV/AIDS. 4. Encourage participants be creative about forging links with organizations that could help them manage HIV/AIDS more effectively. Stigma amelioration could also be applied to other illness communities, including those with obesity, drug addiction, obstructive pulmonary disease, and mental ill health. Confronting HIV/AIDS and Its Links to the Alcohol Industry in Cambodia The Hybrid Capacity Building Model (HCBM) of Lubek and Wong (2001), Lubek (2005), and collaborators is a

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Overview

third example of a community-level HIV intervention. The context is that of attempting to reduce not the stigma of HIV/AIDS, but its actual transmission. The HCBM brings diverse stakeholders together, even when their interests initially appear conflicting, to help solve a shared problem. In rural Cambodia, where nonliteracy rates are as high as 75%, female workers face health and safety risks selling international beer brands (e.g., Heineken, Three Horses, Budweiser, Stella Artois, Beck’s, and Tiger) in restaurants. These “beer girls” are underpaid by about 50% and are sometimes forced to trade sex for money. Twenty percent are HIV-seropositive, quickly die, and are replaced by younger girls from the countryside. Beer girls must wear the uniforms of the international beer brands they sell in restaurants and beer gardens. The Siem Reap Citizens for Health, Educational, and Social Issues (SiRCHESI, 2006) organization, which embodies the HCBM, has been confronting the issues involved, using participatory action research (see Figure 1.6). In 2002, beer girls were set a nightly sales quota of 24 cans or small bottles, each selling for $1.50 on average, totaling $36 worth of beer daily or $13,000 annually. In 2004 and 2005, Heineken and Tiger Beer promotion women were put on fixed salaries of around $55 per month, which is about half the income they need to support their families. One third of the women support children as single mothers, and 90% support rural families. About half become indirect sex workers, exchanging money for sex to supplement their income. Beer girls consume unsafe quantities of alcohol when working—over 1.2 liters of beer (about five standard drinks) nightly, 27 days a month (Schuster, 2006). This reduces condom use, increasing risks for HIV/AIDS and STIs. Condom use following beer drinking is lowered, and 20% of the beer promotion women in Cambodia are seropositive for HIV/AIDS (Lubek, 2005). In 2010, it was estimated that there were approximately 200,000 people living with HIV/AIDS (PLWHAs) in Cambodia, with 10,000 in Siem Reap. A clone of the life-prolonging antiretroviral therapy (ARVT) costs approximately $360 per year. The annual wage of $600 to $800 means that ARVT is not an option for HIV-positive beer girls. M´edecins Sans Fronti`eres and other NGOs provide free clone ARVT for a small number of Cambodians with HIV/AIDS. Death can follow 3 months to 2 years after diagnosis. The spread of HIV/AIDS is accelerated by sexual tourism, poverty, and lack of condom use, and HIV seropositivity rates have averaged 32.7% (1995–2005) for brothel-based (direct) sex workers. Siem Reap is the largest tourist site in

Cambodia, hosting 354,000 people in 2001 and over 1 million in 2004. Many of the male tourists are sex tourists. In 2001, 23 brothels were registered in the 100% condom-use program, employing 250 direct sex workers. An additional 350 indirect sex workers were beer promotion women or worked as massage workers and karaoke singers (Lubek, 2005). Infection patterns reflect a bridging pattern involving sexual tourists, indirect and direct sex workers, local men, and their wives and newborns. Married women, men, and young persons are increasingly at risk, with fewer than 10% of the estimated 10,000 persons living with HIV/AIDS in Siem Reap in 2006 receiving antiretrovirals. In 2006 to 2008, SiRCHESI partnered with three Siem Reap hotels in a hotel apprenticeship program. This removed women from risky beer-selling jobs, sending them every morning to SiRCHESI’s school to learn English, Khmer reading, health education, and social and life skills. One primary prevention project started in 2006 to remove women from risky beer-selling jobs and trained them for safer careers inside the hotel industry. New advocacy, political, and policy-formation skills, and activism include trade union activities for beer sellers, meetings with government legislators, supplying data to ethical shareholder groups, and debating international beer executives in the press and scientific journals. Multiple actions were organized to tackle the issue at different levels: • Workshops training women at risk for HIV/AIDS to be peer educators about health and alcohol overuse • Workshops to prevent the sexual exploitation and trafficking of children • Company sponsorship of HIV/prevention health education • Fair salaries to enable the women to adequately support their dependents • Monitoring voluntary HIV/AIDS testing (serology) • Free antiretroviral therapy (ARVT) for “promotion girls” who are HIV positive • Breathalyzer testing in bars • Changes in community health behaviors and attitudes • Fund-raising through the sale of fair trade souvenirs SiRCHESI uses a multisectoral PAR approach to confront the HIV/AIDS pandemic in Cambodia. The PAR approach emphasizes empowerment of local women and others increasingly at risk, as well as development of a culturally and gender-sensitive health intervention and research program, which eventually can be made selfsustaining. This approach succeeds best by facilitating collaboration between grassroots organizations and

Health Psychology: Overview

local and international corporate industries. All of these organizations need to take joint responsibility for the risk prevention of HIV if the objective to lower its spread is to be achieved. The HCBM provides a model for achieving this goal. Critique of Community-Level Models Lack of Evaluation. If we are to place any confidence in a health-care intervention, the ability of an intervention to improve the health of individuals suffering from a health risk or an illness needs to be objectively evaluated. Ideally, a similar robust level of proof is required for all types of intervention. However, the same high level of proof available for individual-level interventions is not feasible for the majority of community-level interventions. Community interventions are, by definition, unique to each particular set of community circumstances, and the intervention(s) designed in light of the circumstances arising as the various stakeholders influence what actually happens. A community intervention often feels messy, fluid, difficult to control, and certainly not amenable to a randomized controlled trial. It is almost impossible to run trials using matched controlled conditions in bottom-up interventions of the kind reviewed in this section. However, evaluation using other types of design is not precluded and should ideally be carried out; for example, processes and outcomes should be monitored and compared at different time points. Unfortunately, for many community projects, evaluation ends up being a low priority or tends to be overlooked. Lack of Detailed Description. Another problem with the community approach is that community projects are often described in insufficient detail and clarity to enable people who were not directly involved to understand exactly what took place and how they could, if they wanted to, replicate the intervention at another time and place. Empowerment—Who Empowers Whom?. The idea of one group of people empowering others to do things that they otherwise could or would not do is a problematic concept. Who is to decide what it is exactly that the others should be encouraged to do? What right does the intervention group have to make this assumption? Who knows best what should be aimed for? Who are the power brokers, and how much control do they try to retain? Victim Blaming. When community members are asked to participate in an intervention, their response can

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be quite variable. Participators can be perceived as an ingroup or elite, and those who do not participate as an out-group. Nonparticipation can then act as a vehicle for victim blaming. The people in the in-group may well ask why others are not coming forward to join in and avail themselves of the organized events, which may be seen as a failure to help themselves. Unexpected Consequences. Community change occurs as a consequence of a complex interplay of actors, circumstances, and actions. The aims and objectives may well be noble and righteous, but the consequences are not always predictable or certain. The outcome could possibly be to the benefit of some and to the detriment of others. A kind of methodological hubris may cause unintended harm through externally led intervention techniques such as PAR (Estacio & Marks, 2010). Qualitative Perspectives Qualitative research provides in-depth methods for analyzing and theorizing health and illness experiences. In principle, it offers a rich mine of data and theory for the development of health psychology as a subdiscipline. Figure 1.5 shows a substantial increase in research using qualitative methods over the 20-year period 1990–2009. I searched the ISI Web of Knowledge database using the terms: Topic=(“qualitative method” OR “interpretative phenomenological analysis” OR “discourse analysis” OR “grounded theory” OR “thematic analysis”) AND Topic=(“psychology”) AND Topic=(“health”). A second search used the terms: Topic=(“qualitative method” OR “interpretative phenomenological analysis” OR “discourse analysis” OR “grounded theory” OR “thematic analysis”) AND Topic=(“illness”) AND Topic=(“psychology”). The total number of qualitative studies concerning psychology, health, and illness rose steadily from 13 studies in 1990 to 347 studies by 2008 (see Figure 1.5). The “qualitative turn” in all areas of health research is irreversible; the qualitative literature will grow steadily well into the future. We discuss this topic in more detail later. Methods include interpretative phenomenological analysis (IPA), grounded theory, thematic analysis, and discourse analysis. Smith (1996) introduced IPA as a way of crossing the divide between cognition and discourse in health psychology. Smith drew the theoretical roots of IPA from phenomenology and symbolic interactionism. Following are two brief examples. Osborn and Smith (1998) used IPA to explore the personal experience of chronic benign lower back pain in which pain, physical impairment, and biological pathology are allegedly

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Overview

only loosely correlated, and pain, distress, and disability are to some degree mediated by the meaning of the experience to the sufferer. Osborn and Smith carried out semistructured interviews with nine women suffering from chronic back pain and used the verbatim interview transcripts for an interpretive phenomenological analysis. The investigators reported four themes: “searching for an explanation,” “comparing this self with other selves,” “not being believed,” and “withdrawing from others.” The researchers concluded that the participants were unable to explain the persistent pain or to “reconstruct any contemporary self-regard.” They found that in certain situations the participants felt obliged to appear ill to conform to others’ expectations and that they treated their own pain as a stigma and tended to withdraw from social contact. Seamark, Blake, Seamark, and Halpin (2004) explored the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their caregivers. Nine men and one woman with severe COPD and the caregivers of eight of the men, in East Devon, England, completed semistructured interviews that were analyzed using IPA. The emergent themes were “losses,” reflecting the loss of personal liberty and dignity and of previous expectations of the future; “adaptation,” strategies to cope with the effects of the disease; and “relationships,” related to both positive and negative aspects of contact with health professionals. Caregivers reported experiencing some of the same losses as the patients and appeared enmeshed with the illness. There was a significant decline in activities of daily life and social isolation for patients with severe COPD. Brocki and Wearden (2006) provided a critical evaluation of the use of IPA in health psychology. They concluded that while IPA seems applicable in a wide variety of research domains, there is sometimes a lack of attention to the interpretative aspects of the approach. Another leading set of procedures is concerned with grounded theory (Glaser & Strauss, 1967), a method for organizing data into a theory about how people think about a set of issues. A “rhetorical wrestle” developed, leading to two main approaches to grounded theory: Glaser’s (1999) approach and the Corbin and Strauss (1990) approach. For example, Schilder and colleagues (2001) studied the relationship between identity and health-care experiences (including antiretroviral therapy utilization) among HIV-positive sexual minority males. Data collection occurred through focus groups and interviews with 47 HIV-positive participants from three minorities: gay men, bisexual men, and transgender persons,

gender identifying as female and/or living as women. Data were obtained on (a) general experiences with health care, (b) experiences with HIV antiretroviral therapies and issues surrounding access, and (c) adherence to these therapies and identity in relation to health care. The investigators saw three themes emerging from the data: “(1) the importance of sexual identity and its social and cultural context, (2) the differences in the health concerns between the sexual minorities and (3) a wide spectrum of experiences with the health-care system that provide information surrounding the access to and adequacy of health care.” In a study of the origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS, Lavery, Boyle, Dickens, Maclean, and Singer (2001) interviewed 32 people with HIV-1 or AIDS in Toronto about their experiences of deliberation about euthanasia or assisted suicide and the meaning of these experiences. Grounded theory procedures were used to analyze the data. They found that the participants’ desire for euthanasia and assisted suicide were affected by two main factors: “disintegration,” which resulted from symptoms and loss of function, and “loss of community,” which they defined as “progressive diminishment of opportunities to initiate and maintain close personal relationships,” which resulted in perceived loss of self . The investigators concluded that participants saw euthanasia and assisted suicide as a means of limiting this loss of self. Thomas and James (2006, p. 767) discuss three problematic issues with grounded theory: theory, ground, and discovery. They argue that these concepts “constrain and distort qualitative inquiry, and that what is contrived is not in fact theory in any meaningful sense.” These critics suggest that what materializes using grounded theory procedures is “less like discovery and more akin to invention.” Another leading approach has been discourse analysis (DA). This analytic approach has allowed free exploration of the ways in which aspects of health and illness are constructed through language (e.g., Schou & Hewison, 1998). Two methods have evolved: traditional DA and Foucauldian DA. Using the traditional DA method, Hoffman-Goetz (1999) analyzed magazine cancer stories to search for “teachable moments” about cancer prevention and control among a predominant readership of Black women. Eleven full-length, personal cancer stories in Jet, Ebony, and Essence from 1987 to 1995 were analyzed. Six themes emerged: religiosity, cancer, fatalism, quality of life after diagnosis, interactions with medical

Health Psychology: Overview

personnel, and treatment choices. The narratives in these women’s magazines emphasized religious beliefs in cancer survival and presented mixed attitudes toward White medical institutions. Mass media contribute to cancer survival discourse by helping to shape women’s knowledge and attitudes. Salmon and Hall (2003) discussed the role of discourse concerning patient empowerment (PE) that constructs patients as active agents in managing illness and health care. They argued that discourse can best be understood by examining how it meets the needs of those who use it, whether patient or provider. Salmon and Hall suggested that PE discourse has the potential to conveniently allow clinicians to “withdraw from responsibility for areas of patient need that are problematic for medicine, such as unexplained symptoms, chronic disease and pain” (2003, p. 1969). Discourse is influencing “boundaries of medical responsibility,” which Salmon and Hall argued should be “subjects for, rather than constraints on, empirical research.” Willig (2000) differentiated two ways in which an alternative, Foucauldian version of discourse analysis (FDA) can be applied. FDA method 1 has been used to deconstruct expert discourses of health and illness; FDA method 2 is used to determine the extent to which dominant discourses are reflected in laypeople’s talk about health and illness. Willig (1998) discussed lay constructions of sexual activity and their implications for sexual practice and sex education. She argued that most sex education uses language to communicate messages that construct “particular versions of reality” (1998, p. 383). Semistructured interviews with 16 heterosexual adults included questions about sexual risk taking within the context of HIV/AIDS. Willig’s (1998, p. 383) analysis identified lay constructions of “sexual activity” that, she suggested, could make AIDS education more effective by addressing “the wider discourses surrounding sexuality and sexual relationships.” The “wider discourses” are a key part of what we mean by culture as a core constituent of health experience and behavior, not as an optional add-on under a label such as “past experience.” Yardley (2000) pinpointed a few dilemmas about how qualitative health research can be evaluated, specifically, what criteria are appropriate for assessing the validity of a qualitative analysis. Yardley made a case for applying the following criteria: sensitivity to context, commitment and rigor, transparency and coherence, and impact and importance. Chamberlain (2000) argued that qualitative researchers are in danger of reifying methods in the

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same way as colleagues in quantitative research. Meyrick (2006) described a simple, practitioner-focused framework for assessing the rigor of qualitative research. Her review indicated two core principles of quality: transparency and systematicity. At present, the jury is still out regarding the ultimate contribution of qualitative research to the field of health psychology. Certainly, the methodology is full of promise, but the potential for a grand new theory is yet to be realized.

The Critical Perspective Critical health psychology, an approach aiming to generate alternative theories (Marks, 2002, 2004, 2006) was the subject of an article by Hepworth (2006). Hepworth identified three philosophical phases in critical health psychology’s role in contributing to public and global health: rejection of reification (past), consensuality and subjectivism (present), and justice and fairness (future). This article provoked a mixture of positive and negative reactions from international commentators. Bunton (2006) encouraged reflection and critique of health psychology’s applications in public health and what he called the “inseparability of psychology and politics”: Behavior oriented health promotion has often relied on oversimplistic and over-deterministic models in which action emanates from individuals, not the social or economic structures they inhabit. Mainstream health psychology models are allied with official health ideology and policy, stressing self-control, self-regulation and responsible (low-cost) health citizenship. (Bunton, 2006, p. 343)

Maclachlan (2006, p. 361) suggested that the global health movement offers health psychologists an avenue to develop “a pragmatic approach to the interconnectedness of poor health and inequality,” especially in lowincome countries. However, Lee (2006) argued that work to improve health on a global scale that aims to reduce inequities is being done, but not by health psychologists. Vinck and Meganck (2006) suggested that the important concerns of critical health psychology are better served by efforts to help mainstream health psychologists think and work more strongly from a critical perspective. Among other concerns, critical health psychologists have called for “actionable understandings of the complex individual–society dialectic underlying social inequalities” (Murray & Campbell, 2003, p. 236).

20

Overview

Perhaps the strongest inspiration for a new theoretical approach has come, not from Western academe, but from Mart´ın-Bar´o (1994, p. 45, cited by Murray & Campbell, 2003): If it is not the calling of the psychologist to intervene in the socio-economic mechanisms that cement the structures of injustice, it is within the psychologist’s purview to intervene in the subjective processes that sustain those structures of injustice and make them viable.

There are many injustices that require intervention. Whether the majority of health psychologists have the grit, courage, and determination to engage in such interventions is an open question.

A TAXONOMY FOR INTERVENTIONS Designing and reporting an intervention study is a highly complex operation belied by the simplicity of available descriptions within the literature. A vast array of programs, interventions, and techniques can be delivered in a multitude of combinations, enabling millions of different interventions (Marks, 2009). Psychology as a discipline requires new heuristics for intervention research and reporting. In medicine and health care, there is a large gap between what gets measured and what matters most to service users. Furthermore, reports of behavior change studies typically provide brief, opaque descriptions of what in reality may be complex interventions. These problems multiply to make meaningful progress a significant challenge. The problem is that there is no meaningful method of relating interventions for behavior change to any single theory or taxonomy. Within the context of social cognition theory, Bartholomew, Parcel, Kok, and Gottlieb (2001) described a method for intervention mapping in developing theory and evidence-based health education programs (Schaalma, Ruiter, van Empelen, & Brug, 2004). Yet, there is no accepted taxonomy for methods and techniques employed to carry out interventions to change behavior. This means that researchers do not know how to label what they have done in a way that communicates it in any precise manner. A key issue in designing and reporting interventions is transparency. CONSORT guidelines for randomized controlled trials (RCTs; Moher, Schultz, & Altman, 2001) and the TREND statement for nonrandomized studies (Des Jarlais, Lyles, & Crepaz, 2004) were intended to bridge the gap between intervention descriptions and intended

replications. These guidelines have driven efforts to enhance the practice of reporting behavior change intervention studies. Davidson and colleagues (2003) expanded the CONSORT guidelines in proposing that authors should report (a) the content or elements of the intervention, (b) characteristics of those delivering the intervention, (c) characteristics of the recipients, (d) the setting, (e) the mode of delivery, (f) the intensity, (g) the duration, and (h) adherence to delivery protocols/manuals. Intervention studies are typically designed to compare one, two, or, at most, three treatments with a control condition of standard care, a wait-list control, a placebo, or no treatment. The standard designs are simple, pragmatic, and artificial because precious resources must be stretched across a large number of trials. The need for powerful study designs is a key requirement for both ethical and statistical reasons, which means sample sizes are critical and the number of arms to the study relatively small (typically two or three maximum). Rarely, if ever, does an intervention include only one technique, with practically all trials including two or more techniques in combination. If an intervention domain such as smoking has, say, 500 techniques, then there would be 2.5 million possible dyadic combinations, 124 million triadic combinations, and 62 billion tetrads. Which specific combination is used in any individual case, and in which specific sequence, depends on the subjective choices of the practitioner. There is no way for multiple billions of potential interventions to be evaluated, which means that the vast majority of practice has never been evaluated in the form in which it is offered. The pragmatic solution to intervention design is to assume that the individual components must have a supportive evidence base. If interventions are described incompletely, it is not possible to (a) determine all the necessary attributes of the intervention, (b) classify the intervention into a category or type, (c) compare and contrast interventions across studies, (d) identify which specific intervention component was responsible for efficacy, (e) replicate the intervention in other settings, and (f) advance the science of illness prevention by enabling theory testing in the practice of health care. One way to bring order to the chaos is to use a taxonomic system similar to those used to classify organisms or substances. Taxonomies for living things have been constructed since the time of Aristotle, and the periodic table in chemistry is the best known example of taxonomy. Recently, there has been interest in developing a taxonomy for health psychology interventions. Some researchers approached this issue by generating shopping

Health Psychology: Overview

lists of interventions used in different studies. Abraham and Michie (2008) described 26 behavior change interventions, which they claimed provide a “theory-linked taxonomy of generally applicable behavior change techniques” (p. 379). However, no generic theory is available to generate such lists or to organize them. In reality, all we have is a list of practical issues that need solutions. Michie, Johnston, Francis, Hardeman, and Eccles (2008, Appendix A) produced a list of 137 heterogeneous techniques. Michie, Jochelson, Markham, and Bridle (2008) aimed to review the evidence base for the effectiveness of health behavior interventions for low-income groups to reduce smoking or unhealthy eating or increase physical activity. The resulting mismatch between the list and interventions actually used in practice led to false conclusions about effectiveness when statistics were run on the data (Marks, 2009). A simple list can never be a taxonomy. An intervention taxonomy needs to be a systematic organization of all known program and intervention types, deconstructed into components consisting of all known techniques and subtechniques. A taxonomy with six levels is illustrated in Figure 1.7. Paradigm Level

Community

Diabetes

Domain Level

Hypertension

Intervention Level

The taxonomy has six nested levels: 1. Paradigms, such as individual, community, public health, and critical 2. Domains, such as stress, diabetes, hypertension, smoking, weight, and exercise 3. Programs within a domain, such as smoking cessation, obesity management, stress management, and assertiveness training 4. Intervention types within a program, such as relaxation induction, imagery, planning, cognitive restructuring, imagery, and buddy system monitoring 5. Techniques within an intervention type, such as, within imagery, mental rehearsal, guided imagery, flooding in imagination, and systematic sensitization 6. Subtechniques within a technique, such as, within guided imagery, a variety of sensory modalities (sight, sound, smell, taste, touch, warmth/coldness), scenarios (e.g., beach, forest, garden, air balloon), delivery methods (e.g., spoken instruction, self-administered by reading, listening to audiotapes), settings (e.g., individual, group), and participant positions (e.g., supine, sitting on floor, sitting on chair) Individual

Stress

Public

Critical ...

Weight

Exercise ...

...Stress Management ...

Program Level

Planning

Technique Level

Sub-Technique Level

Figure 1.7 Taxonomy of interventions

Relaxation Induction

Imagery

Mental Rehearsal

Sight

21

Sound

Cognitive Restructuring

Buddy System

Monitoring

Guided Imagery

Smell Forest Spoken

Supine

22

Overview

This taxonomy is capable of including all health psychology paradigms, domains, programs, intervention types, techniques, and subtechniques as defined with universal reference in the form of a tree diagram. The tree diagram enables a unique and fully transparent specification of every conceivable intervention, the sequence of their delivery, and the included subtechniques. As long as the designer is sufficiently specific, this taxonomic system enables any imaginable intervention to be constructed, delivered, evaluated, labeled, reported, and replicated in an unambiguous fashion. Each theoretical approach could thereby generate a different tree for different domains, and the various competitors can be empirically trialed and tested. This constitutes an ambitious program for health psychology, but without it or something similar, the current chaos in the field will prevail indefinitely.

CONCLUSIONS Health psychology as a subdiscipline has existed for about 40 years. The focus on social cognition has been a cul-desac to nowhere. For progress to occur, health psychology must take a U-turn from the study of what must be true (tautologous pseudomodels) to the study of what might be (helpful explanations), from what individuals do and say (behavior) to what that behavior means (contextuality), from social cognitions (box ticks) to personal subjectivities (experience of health and well-being), from the status quo (demographics) to social injustice (structures of power and inequality). The qualitative turn promises to lead the way with new insights, theories, and understandings. We must have the courage to interpret and theorize about what people tell us about their experiences of health, illness, and health care. If not, we are missing a golden opportunity. How, when, or if this change will happen is a matter for us all.

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PART II

Causal and Mediating Psychosocial Factors

CHAPTER 2

Stressful Life Events RALF SCHWARZER AND ALEKSANDRA LUSZCZYNSKA

STRESSFUL LIFE EVENTS 29 STRESS AND CRITICAL LIFE EVENTS: THEORETICAL PERSPECTIVES 29 THE NATURE OF STRESSFUL LIFE EVENTS AND DISASTERS 31 ASSESSMENT OF STRESSFUL LIFE EVENTS 35

RESEARCH EXAMPLES OF STRESSFUL LIFE EVENTS 41 STRESSFUL LIFE EVENTS IN THE LIGHT OF GENDER, CULTURE, ETHNICITY, AND AGE FUTURE DIRECTIONS 51 REFERENCES 52

STRESSFUL LIFE EVENTS

STRESS AND CRITICAL LIFE EVENTS: THEORETICAL PERSPECTIVES

Stress is a universal phenomenon in our daily lives, but critical life events stand out and may represent milestones in our biographies. Normative life events happen to most of us, such as school and job transitions, marriage, and retirement. Nonnormative life events, such as surgery, accidents, or loss of loved ones, may be less frequent or not happen at all. This chapter explores the psychological ramifications mainly of nonnormative life events, aiming to add to our understanding of the mechanisms that influence health and well-being. We start with a brief overview of theoretical concepts and critical issues related to stressful life event research. Also, we discuss the characteristics of major events and disasters and the attempts to measure the unique ways in which people experience them. We present some empirical findings on the relationships between specific life events and health consequences. Examples are drawn from a variety of natural and technological disasters, war and terror, and bereavement. Not included in this chapter are personality, coping, and social support that also affect mental and physical health in the context of critical life events (see other chapters in this volume for insight into these aspects). Indirectly, understanding the nature of stress also facilitates our understanding of subjective wellbeing as a contributor to health and longevity (Diener & Chan, 2011).

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There is little agreement among researchers about the definition of stress. In the biomedical sciences, stress is mainly understood as an organism’s response to adverse stimulation. In psychology, stress is usually understood as the process in which a person and the environment interact. Sometimes the nature of the stressor is the focus of research. In health psychology, joint effects of the person and environment on pathology are studied, along with mediating and moderating factors, such as coping and social support. Basically, three broad perspectives can be chosen when studying stress: (1) response based, (2) stimulus based, and (3) the cognitive-transactional process. The Response-Based Perspective: Strain When people say, “I feel very stressed,” they refer to their response to some adverse situation. The focus is on the way their organism reacts. Selye (1956) has distinguished between a stressor (the stimulus) and stress (the response). Selye was not interested in the nature of the stressor, but rather in the physiological response and the development of illness. This response to a stimulus follows the same typical three-stage pattern in humans and animals, called the general adaptation syndrome (GAS). According to the GAS, the body initially defends itself against adverse

29

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circumstances by activating the sympathetic nervous system. This has been called the alarm reaction. It mobilizes the body for the “fight or flight” response, which can be seen phylogenetically as an adaptive short-term reaction to emergency situations. In many cases, the stress episode is mastered during the alarm reaction stage. Often, however, stress is an enduring encounter, and the organism moves on to the resistance stage, in which it adapts more or less successfully to the stressor. Although the person need not make the impression of being under stress, the organism does not function well and falls ill. According to Selye (1956), the immune system is compromised, and some typical “diseases of adaptation” develop under persistent stress, such as ulcers and cardiovascular diseases. Finally, in the exhaustion stage, the organism’s adaptation resources are depleted, and a breakdown occurs. This is associated with parasympathetic activation and overall wear and tear of the body’s system that leads to illness, burnout, depression, or even death (McEwen & Gianaros, 2010; Segerstrom & Miller, 2004). This response-based perspective of stress has its merits, and it remains the dominant view in the biomedical sciences, but less so in psychology. The main reason it is not well supported in psychology is that Selye has de-emphasized the role of emotions and cognitions by focusing on physiological reactions in animals. Selye (1956) claimed that all these organisms show a nonspecific response to adverse stimulations, no matter what the situation is. In contrast, psychological theories highlight the individual’s interpretation of the situation as a major determinant of a stressful encounter. The Stimulus-Based Perspective: Stressor When people say, “I have a stressful marriage,” they refer more to a trying situation than to their response to that situation. The stimulus-based perspective takes this approach, paying more attention to the particular characteristics of the stressor. It is argued that each critical episode has its unique demands, be it physical, social, role, or task, that specifically tax the individual’s coping resources, thus triggering a particular stress response. The research question establishes relationships between a variety of distinct stressors and outcomes, including illness. This line of research emerged when Holmes and Rahe (1967) attempted to measure life stress by assigning numbers, called life-change units, to 43 critical life events. They assumed that the average amount of adaptive effort necessary to cope with an event would be a useful

indicator of the severity of such an event. A volume edited by B. S. Dohrenwend and Dohrenwend (1974) was another milestone of the stimulus-based perspective of stress. Today, research in this tradition continues, but it is often flawed by a number of problems (Hatch & Dohrenwend, 2007). One basic shortcoming is the use of average weights for events, neglecting that different individuals may have a very different perception of the same kind of event. Also, studies rely too often on retrospective reports of previous challenges that might not be remembered well or that are distorted as a result of defense mechanisms. In addition, personality, coping processes, and changes in social support are sometimes insufficiently examined. The degree to which the objective nature of the stressor should be emphasized in contrast to its subjective interpretation is an ongoing debate (Bonanno, Brewin, Kaniasty, & La Greca, 2010; Hobfoll, 2010). The Cognitive-Transactional Process Perspective Cognitive-transactional theory (Lazarus, 1966, 1991, 2006) defines stress as a particular relationship between the person and the environment that is appraised by the person as being taxing or exceeding his or her resources and endangering his or her well-being. There are three metatheoretical assumptions: transaction, process, and context. It is assumed that (1) stress occurs as a specific encounter of the person with the environment, both of them exerting a reciprocal influence on each other; (2) stress is subject to continuous change; and (3) the meaning of a particular transaction is derived from the underlying context. Research has neglected these metatheoretical assumptions in favor of unidirectional, cross-sectional, and context-free designs. Within methodologically sound empirical research, it is hardly possible to study complex phenomena such as emotions and coping without constraints. Also, on account of its complexity and transactional character, leading to interdependencies between the variables involved, the metatheoretical system approach cannot be investigated and empirically tested as a whole model. Rather, it represents a heuristic framework that may serve to formulate and test hypotheses in selected subareas of the theoretical system only. Thus, in terms of the ideal research paradigm, one has to make certain concessions. Investigators have often focused on structure instead of process, measuring single states or aggregates of states. Ideally, however, stress has to be analyzed and investigated as an active, unfolding process. Lazarus (1991, 2006) conceives stress as an active, unfolding process that is composed of causal antecedents,

Stressful Life Events Life Events Impact Duration Predictability Controllability

Appraisals Challenge Threat Harm or loss

Resources Personal Social Material

Coping

Health & Well-Being

Social Support

Figure 2.1 Process model of the stress-health relationship, based on the transactional stress theory (Lazarus, 1966, 1991, 2006)

mediating processes, and effects. Antecedents are person variables, such as commitments or beliefs, and environmental variables, such as demands or situational constraints. Mediating processes refer to coping and appraisals of demands and resources. Experiencing stress and coping bring about both immediate effects, such as affect or physiological changes, and long-term effects concerning psychological well-being, somatic health, and social functioning (see Figure 2.1). Cognitive appraisals comprise two component processes, namely, primary (demand) appraisals and secondary (resource) appraisals. Appraisal outcomes are divided into the categories challenge, threat, and harm/loss. First, demand appraisal refers to the stakes a person has in a stressful encounter. A situation is appraised as challenging when it mobilizes physical and mental activity and involvement. In the evaluation of challenge, a person may see an opportunity to prove herself or himself, anticipating gain, mastery, or personal growth from the venture. The situation is experienced as pleasant, exciting, and interesting, and the person feels ardent and confident in being able to meet the demands. Threat occurs when the individual perceives danger, expecting physical injuries or blows to one’s self-esteem. In the experience of harm/loss, damage has already occurred. This can be the injury or loss of valued persons, important objects, self-worth, or social standing. Second, resource appraisals refer to one’s available coping options for dealing with the demands at hand. The individual evaluates his or her competence, social support, and material or other resources that can help to readapt to the circumstances and to reestablish equilibrium between a person and the environment. Hobfoll (1988, 1998, 2010) has expanded stress and coping theory with respect to the conservation of resources

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as the main human motive in the struggle with stressful encounters. Hobfoll’s (1988) conservation of resources theory (COR) provides an integrative framework for studying stress that takes environmental as well as internal processes equally into account. COR theory follows from the basic motivational tenet that people strive to obtain, retain, protect, and foster that which they value or that which serves as a means of obtaining what the individual values. According to Hobfoll, such resources are objects (e.g., property, car), conditions (e.g., close friendship, marriage, job security), personal characteristics (e.g., self-esteem, mastery), or energies (e.g., money, knowledge). Stress occurs in any of three contexts: (1) when individuals’ resources are threatened with loss, (2) when individuals’ resources are actually lost, and (3) when individuals fail to gain resources. This loss–gain dichotomy, and in particular the resourcebased loss spirals and gain spirals, shed a new light on stress and coping. The change of resources (more so the loss than the gain) appears to be particularly stressful, whereas the mere lack of resources or their availability seems to be less influential. Resources were also an important ingredient in Lazarus’s (1991) theory. The difference between the two views lies mainly in the status of objective and subjective resources. Hobfoll, considering both objective and subjective resources as components, lends more weight to objective resources. Thus, the difference between the two theories, in this respect, is a matter of degree and focus, not a matter of principle.

THE NATURE OF STRESSFUL LIFE EVENTS AND DISASTERS Every day, disasters strike somewhere, with more or less proximity and severity. In health psychology, attention is directed to the factors that translate between adversity and mental and physical health outcomes. Research on stressful life events mainly follows a stimulus-based paradigm by examining the characteristics of the event, the overall context, coping resources, and individually different response patterns. Life events can be normative or nonnormative. High-magnitude events qualify as disasters, such as natural or technological catastrophes or other man-made crises, such as war and terrorism. The experience of threat, harm, or loss depends, among other things, on the event predictability, its controllability, the perceived intent, and individual differences in risk aversion or biased risk perception. On the response side, illness,

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posttraumatic stress disorder, resilience, and posttraumatic growth are frequent study outcomes Characteristics of Life Events and Disasters A common distinction is the one between normative and nonnormative life events. Normative events refer to anticipating a certain class of events that naturally happen to many individuals at certain times during their lives and are expected, for example, school transitions, marriage, childbirth, academic exams, retirement, or death of parents. In contrast, nonnormative events pertain to rare or unexpected events, such as disasters, accidents, or diseases. One can prepare in general for a broad array of potential harm, but one does not know when and if such events will occur. Disasters represent one of the most threatening situations a person can experience. They are usually defined as devastating stressors that cause major damage and impose threat and loss of life and goods. They may occur unexpectedly and swiftly, but they may have long-lasting consequences. Fire, floods, hurricanes, and earthquakes leave behind a vast number of households with sweeping damage and injuries. The same applies to human-made disasters, such as war, terror, collapsing bridges, or chemical or nuclear accidents. Historically, research on health effects of stressful life events commenced with clinical records of individual reactions to war. Following the American Civil War and World War I, shell shock and battle fatigue became known as extreme reactions to this kind of stress. After World War II, studies on the long-term effects of the Holocaust and other war-related events, such as the devastation of Hiroshima, were conducted. Disasters unrelated to war have been investigated by psychologists since the 1970s. At present, a broad variety of disasters, ranging from tornadoes and floods to fire and toxic spills, are being examined for their health impact on individuals and communities. An excellent brief overview of disaster characteristics and postdisaster response is given by Schooler (2001). A cataclysmic event qualifies as a disaster according to the amount of damage done and the amount of assistance required. The power of the event alone is inadequate: A powerful earthquake in a remote desert may not be considered as a disaster, whereas one of the same magnitude in a city would qualify because of the resulting substantial damage. In addition to harm sustained, considerable disruption to people’s lives can also factor into the definition of disaster. The present section deals with distinctions that have been applied to characteristics of life events and disasters.

Objective characteristics of a stressful encounter influence the way people appraise them cognitively as challenges, threats, harm, or loss. The severity, duration, and ambiguity of a stressor, among other characteristics, make a difference when it comes to appraisal, emotions, coping, and outcomes. Loss of loved ones, academic failure, injury, job loss, divorce, and disasters that affect an entire community can be categorized along a number of dimensions, including predictability, controllability, suddenness, and strength of impact. Type of Disasters As mentioned before, one distinction of critical life changes is between normative and nonnormative events. Among the latter, another common distinction is made between natural and technological disasters. Natural disasters occur primarily without human influence. They are sometimes split into three subcategories: (1) hydrometeorological disasters, including floods, storms, droughts, extreme temperatures, forest or scrub fires, landslides, and avalanches; (2) geophysical disasters, such as earthquakes, tsunamis, and volcanic eruptions; and (3) biological disasters, covering epidemics and insect infestations. Disasters have always occurred throughout history, but their global effect on the minds of people became conspicuous only after mass media made communication fast and easy. The volcanic eruption of Krakatau (Indonesia) in 1883 cost 36,000 lives, and the subsequent dust cloud was noticed on a worldwide scale. The combined major earthquakes and tsunamis (Lisbon, 1755; Indian Ocean 2004; Japan, 2011) have had a global impact on the perception of threat. The earthquake in Haiti (2010), with more than 220,000 fatalities, was on the same scale as the tsunami in the Indian Ocean (2004; 220,000 victims). The severity of disasters can be judged in various ways by comparing different outcomes, such as loss of lives or economic losses (see Table 2.1), but also in terms of indirectly affecting people and in terms of changes in perceived vulnerability. The Centre for Research on the Epidemiology of Disasters (CRED) has compiled a database called EM-DAT from various sources, including UN agencies, nongovernmental organizations, insurance companies, research institutes, and press agencies (www.emdat.be/). It contains essential core data on the occurrence and effects of more than 18,000 mass disasters in the world from 1900 to the present. Natural forces crop up suddenly and are uncontrolled, take lives, and alter the environment dramatically. “Natural disasters vary widely in predictability and impact.

Stressful Life Events

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TABLE 2.1 Top 10 Disasters in 2010 According to Number of Deaths and Economic Losses (in US$ billion) Number of Deaths Event 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

Earthquake Heat wave Earthquake Flood Landslide Flood Earthquake Earthquake Cold wave Landslide

Economic Losses

Country

Deaths

Event

Haiti Russia China Pakistan China China Chile Indonesia Peru Uganda

222,570 55,736 2,968 1,985 1,765 1,691 562 530 409 388

1. 2. 3. 4. 5. 6. 7. 8. 9. 10.

Earthquakes are virtually unpredictable, whereas hurricanes can be tracked for days before they hit land. However, consequences such as the extent of physical destruction and disruption of daily life often take victims by surprise, even after the more predictable types of events. Months of cleaning and rebuilding can follow initial rescue work and recovery of human remains. Moreover, drawn-out and complicated insurance, litigation, and financial issues may compound adjustment difficulties following disasters” (Schooler, 2001, p. 3714). Humans may have contributed to the likelihood of certain cataclysmic events by changing the course of nature, for example, by cutting down forests and allowing landscapes to erode. In April 2011, a very bad traffic accident occurred on a German freeway. At least eight people were killed and 130 injured as a freak sandstorm severely hindered visibility and caused a massive pileup in both directions. Dust was whipped up into the air as storms traveled inland across dry fields, which are a result of agriculture. Thus, human-made components blend with forces of nature, and, of course, traffic itself and human error contribute to the disaster. Moreover, an originally natural disaster can have ramifications in other areas. The earthquake in Haiti (2010) had caused more than 222,000 deaths immediately, but later on an epidemic followed, which affected another 185,000 persons, resulting in another 3,790 deaths (Guha-Sapir, 2011). In a more developed country with better infrastructure and hygiene, the consequences would have been much less severe. Thus, humans may contribute to the causes and consequences of disasters in both ways, creating either vulnerable or resourceful factors. Technological disasters can be of equal sudden and intense character, wreaking havoc in the community. Devastating industrial, maritime, nuclear, and aviation accidents may take place without warning. Examples include leaking toxic waste dumps, collapsing bridges,

Earthquake Flood Flood Earthquake Storm Xynthia Hurricane Karl Earthquake Flood Storm Storm

Country

Damage

Chile China Pakistan Haiti France Mexico New Zealand Poland United States United States

30.0 18.0 9.5 8.0 4.2 3.9 3.7 3.2 2.7 2.3

and dam failures, but also industrial accidents involving chemical spills or radiation leaks. Figure 2.2 displays the increasingly widespread prevalence of technological systems, which increases the potential for loss of control over these systems, either due to technical failure or human error.

Impact of Disasters Responses to extreme stress vary greatly in severity and length. Some individuals and communities are paralyzed for a long time, whereas others are affected only moderately and for a short period. When severe events occur, not only the individual but also entire communities have to cope with them. Figley, Giel, Borgo, Briggs, and HaritosFatouros (1995) list five criteria for the determination of a disaster’s impact: (1) knowledge about the magnitude of loss; (2) knowledge of the hazard; (3) knowledge of recurring risk, degree of warning, and preparedness at the individual as well as at the community level; (4) scope of impact to community functioning; and (5) chance of escaping during or immediately after the disaster strikes. Another relevant dimension pertains to the victims of disasters. Considerable differences in the exposure to the event (long or short term, firsthand or secondhand [i.e., having experienced the event themselves instead of through friends or family]) determine the individual responses (e.g., severity of symptoms postevent). Some victims are involved directly because the critical event happened to them, and they have suffered harm or loss. Others are involved indirectly; for example, witnessing an accident or losing loved ones in an earthquake or a plane crash. A third kind of victims are professional helpers, such as rescue workers, who are involved in the cleanup and body handling, such as firefighters or police officers (Bonanno et al., 2010; Bowler et al., 2010).

34

Causal and Mediating Psychosocial Factors 400

350

Number of disasters reported

300

250

200

150

100

50

0 1900

1910

1920

1930

1940

1950

1960

1970

1980

1990

2000

2010

Year

Figure 2.2

Technological disasters reported, 1900–2010

Source: EM-DAT: The OFDA/CRED International Disaster Database, Universit´e Catholique de Louvain, Brussels, Belgium, www.emdat.be/ technological-disasters-trends.

Controllability The impact of disasters is also influenced by human characteristics and cognitions, for example, by perceived predictability of events, their perceived controllability, perceived intent, and risk perception more generally. Perceived controllability is considered to be an important dimension in categorizing the characteristics of stressful life events. The feeling of being in control of something that happens to oneself has been shown to be important for coping with that event. Further, a sudden versus a slow onset, its duration, and its intensity are major determinants in evaluating the stress impact. Natural disasters point toward a lack of control over the environment, whereas technological disasters indicate a loss of control of what had once been under control. A major supposition underlying our dependence on technological systems is that they won’t break down. That is, bridges and dams are supposed to resist all forces of nature, and airplanes and trains

are not supposed to crash. Deviations from this supposition contribute to the harm experienced by victims and witnesses when disaster strikes unexpectedly and uncontrollably. “In the case of technological disasters, an implicit social contract between citizens and corporations is violated. The assumption is that corporations will not harm their customers, workers, or members of the community where they make their products. When this contract is violated, anger and rage are added to the range of emotional responses to disasters” (Schooler, 2001, p. 3715). Another way to conceptualize disasters was suggested by Green (1998), who pointed to the role of perceived intent. Natural disasters represent the low end of a continuum of intent; technological disasters the middle position; and robbery, terrorist attacks, and other acts of violence the high end. Risk Objective risk is defined by technical experts as injury and fatality rates, accident probabilities, or the mean loss of

Stressful Life Events

life expectancy. For example, diseases take significantly more lives per year than accidents. Consequently, diseases represent a greater factual risk than accidents. However, laypeople believe that accidents cause as many deaths as diseases (Slovic, 2000), and in general they overestimate rare causes of death while underestimating common causes of death. Risk perception has two aspects: perceived severity of a condition or event and personal vulnerability toward it. The first refers to the amount of harm that could occur, and the second pertains to the subjective probability that one could fall victim to that condition. The relationship between these two variables has been described by a simple probability by severity interaction, which can be understood as a “rational” principle. This means, for instance, that if the personal vulnerability or likelihood of the event is zero, the resulting perceived risk would also be zero, regardless of how serious the event may be. Laypeople do not calculate risk in the same rational manner as technical experts to determine the magnitude of risk, and there is a lot of evidence for irrational judgments in response to events, particularly rare events. Laypeople calculate the overall risk posed by a certain event in a different way than risk experts do. Instead of multiplying the chance of exposure by the chance of dying, individuals construe the risk of a certain threat by focusing their judgments on the lethal consequences, while ignoring the probability of exposure. The discrepancy between actual responses and those advocated by risk experts is not necessarily indicative for human irrationality, since laypeople may just have another, albeit consistent, view about risk. Slovic (2000) demonstrated that laypeople’s judgments of risk are sensitive, for example, to the controllability of the risk, its familiarity, and its catastrophic potential, as well as to the length of time before severe consequences will emerge. However, recent studies show more straightforwardly that laypeople not only use other conceptions about risk than experts but also they also show clear inconsistencies and misconceptions about risk (Gigerenzer, Gaissmaier, Kurz-Milcke, Schwartz, & Woloshin, 2008). Slovic (2000) has demonstrated the complexity of the concept of risk, arguing that the traditional view of risk assessment as a purely scientific enterprise is inadequate. Slovic believes that danger is real, but risk is socially constructed. Thus, risk assessment appears to be inherently subjective and represents a blending of science and judgment with worldviews, ideologies, and values, which applies not only to the general public but also to scientists.

35

ASSESSMENT OF STRESSFUL LIFE EVENTS The main practical problem with transactional theories of stress is that there is no good way of measuring stress as a process. Therefore, all common procedures to assess stress are either dominantly stimulus based, pointing at critical events and demands, or dominantly response based, pointing at symptoms and feelings experienced. Some procedures measure the frequency or intensity of stressors (stimuli), while others measure distress (response), sometimes called strain. Response-based measures that are available entail symptoms, emotions, illness, and behavioral and physiological changes. Heart rate, blood pressure, immune functioning, illness records, work absentee statistics, avoidance behaviors, performance data, and selfreports are common ways to obtain stress response indicators. Some authors have developed “perceived stress scales” that ask people how “stressed” they feel. Using such measures to tap the construct of stress can be misleading because individual changes in these variables occur at later stages of a demanding episode. Thus, stress is confounded with its consequences. One cannot clearly identify whether the subjective feeling constitutes stress itself or rather the outcome of stress. This chapter is not concerned with stress as a response, and, therefore, this issue is not addressed further. Stimulus-based instruments were developed more than half a century ago, when Hawkins, Davies, and Holmes (1957) introduced their Schedule of Recent Experiences (SRE). A more refined and better-known instrument is the Social Readjustment Rating Scale (SRRS) by Holmes and Rahe (1967), who elaborated on the SRE. The SRRS contains 43 events, ranging from 100 (death of spouse) to 11 (minor violations of the law). Participants responding to the SRRS check the items they have experienced in a past given time span, for example, within the last year. The life-change values of the checked items are then summed up to yield a total score that indicates how much “stress” the individuals had. For example, someone who has experienced the loss of a loved one is supposed to suffer about as much stress as someone else who has married and has been fired at work within the same time period. Obviously, the same stress score can refer to completely different life events in different individuals, and it is questionable whether they should be regarded as psychologically equal and be lumped together in the same analyses. The stress score is then usually related to mood, illness, depression, and other possible outcomes. The underlying assumption was that the negative nature of events is not the important factor, but the amount

36

Causal and Mediating Psychosocial Factors

of change that is required to readjust to a tolerable level of functioning. Therefore, some positive events have also been included in the checklist, such as vacation, Christmas, marriage, and pregnancy. Any change, whether desirable or undesirable, was seen as stressful. Other researchers have eliminated the positive events in favor of negative ones, and they have added a subjective severity rating for each event to weigh the cognitive appraisals that might differ from person to person (Sarason, Johnson, & Siegel, 1978). There have been many debates about the usefulness and effectiveness of such an approach (Turner & Wheaton, 1995). Some researchers found that assigning the same event weights to all individuals who check an item might not do justice to subjective feelings of stress, which could differ enormously between individuals. For example, some people experience divorce as the beginning of a long period of suffering and depression, whereas for others it marks the end point of marital discord and thus comes as a relief. Event weighting could be done either objectively or subjectively. In the case of objective weighting, an expert panel of “judges” may rate the events, or groups of victims might provide information about the seriousness or importance of events. In contrast, subjective weighting refers to individuals rating their own events. Whichever method is chosen, assigning different weights to each event has been shown to result in lower correlations with health outcomes (Turner & Wheaton, 1995). Another suggestion was made by Lazarus and Folkman (1989) by introducing the Daily Hassles Scale and the Daily Uplift Scale. These inventories are based on the assumption that people’s lives are more affected by the cumulation of frequent minor events than by the rare occurrence of a major event. Typical hassles are concern about body weight, health of family members, rising prices of common goods, home maintenance, misplacing or losing items, crime, physical appearance, and the like. It has been found that hassles and major life events were only modestly intercorrelated and that hassles, compared to major life events, were more closely related to illness. The reliability of life event checklists has been suspected to be low (Turner & Wheaton, 1995). Reporting past events requires an accurate recollection of those events. The measurement points in time and the reporting period exert one influence, among others, on how well people remember and report what has allegedly caused them stress. In a 10-month study, women were asked once every month to check all their stressful life events

for that month. At the end of the study, they were asked to report once again all events for the entire 10-month period. It turned out that only 25% of the event categories appeared in both the first and the second lists, the latter containing far fewer events (Raphael, Cloitre, & Dohrenwend, 1991). Basic research on survey methods has shown that responses change with the reference periods given (Winkielman, Kn¨auper, & Schwarz, 1998). Such studies have demonstrated that life event checklists often represent unreliable measures. And if they are unreliable, they may also not be valid, which means that they inaccurately predict illness. The choice of a time frame entails consideration of the particular nature of the stressors. However, since checklists contain numerous events that might have occurred at different times under diverse circumstances, any time frame implies a bias. Moreover, some events are short term, whereas others are long term. The accuracy of remembering and reporting applies to a number of events but not to all of them. For example, loss of loved ones, divorce, or serious accidents are remembered for a lifetime. Their psychological and health consequences can also last for an extended period. Restricting the time frame of events to only one year might lead to failure to notice such previous experiences and, thus, might invalidate the research findings. This argues for the inclusion of lifetime traumas and the assessment of their duration and pervasiveness. Interview measures that allow for qualitative probes have been used as an alternative to checklists (Wethington, Brown, & Kessler, 1995). Narrative stories can shed more light on the nature of subjective experiences. Individuals can name the events they experienced and describe their context more accurately, which would result in more meaningful scores of event significance. However, there is a price for this because interview studies entail more research resources. Moreover, quantification is sometimes difficult. Phrases such as “I am a prisoner of the past,” “part of me died,” or “the disaster opened a can of worms” are illustrative, but scoring them might constitute a problem. Nevertheless, in small sample studies and, in particular, in the explorative phase of research, the interview methodology can be of profound value. Several interview schedules have been published. Widely known is the Life Events and Difficulties Schedule (LEDS) by Brown and Harris (1978). It yields a narrative story of each event nominated, which is then used by researchers to rate the significance of the event. Another method is the Standardized Event Rating System (SERATE) by B. P. Dohrenwend, Raphael, Schartz, Stueve, and Skodol (1993). This is a structured event probe and narrative

Stressful Life Events

rating method for measuring stressful life events that deconfounds some aspects of the narration. In sum, a broad array of life event checklists and interview measures have been published. Critical reviews on the life event methodology are available (Turner & Wheaton, 1995), documenting the difficulties that are necessarily involved in estimating variations in stress exposure. Using a stress measure implies a particular definition of stress, which is not always transparent in the studies. Sometimes stress is not measured at all but is merely inherent in the sample selection. For example, stress is simply implied in a sample of earthquake victims, students facing an exam, or patients undergoing surgery, since it is a common understanding that the situations chosen are very resource demanding and require adjustment. The advantage of such an approach is that all participants undergo a homogeneous class of stressors instead of having been assigned a similar “life-change score” based on an event checklist. In situations where exposure levels are given and no further assessment is needed, one still has to deal with the measurement of coping with stress, which is an equally challenging problem (Schwarzer & Schwarzer, 1996). Health Outcomes of Stressful Life Events Does stress cause illness? Individuals are confronted with a great number of taxing situations, for instance, a noisy neighborhood, difficulties at work, time pressure, problems with a romantic partner, or financial constraints. This list might seem to be an arbitrary array of situations. In fact, probably not everyone would consider these situations as stressful or of great personal importance. However, the cumulative exposure to a number of aggravating daily hassles or situations regarded as stressful over a long period may have detrimental health effects. In contrast, there is no doubt about the personal significance of major life events and their potential impact on health. Extreme stressors can create both acute and prolonged psychological distress and bodily ailments. Research is inconsistent when it comes to answering the question of whether the characteristics of the event itself (e.g., injury, threat, near-death experience) or the changes that occur in its aftermath (e.g., relocation, job loss) are responsible for adjustment difficulties. How does stress cause illness? It is a general assumption that stress leads to poor health in a number of ways. According to Selye (1956), stress operates in three phases: alarm, resistance, and exhaustion. When the organism’s resistance breaks down, an ensuing long

37

period of exhaustion can manifest itself in illness. In the 1950s, Selye did not have much evidence for this claim, but today there is a great deal of substantiation. However, a strong linear relationship cannot be expected since illness is obviously caused by many factors, and stress is only one of them, contributing to pathogenesis in one way or another. Generally, correlation coefficients from .20 to .30 are found. Cohen, Kamarck, and Mermelstein (1983), for example, reported an association of only .14 between stress scores and physiological ailments in college students. Most individuals who experience stress do not develop an illness. Stressful life changes are usually temporary, whereas other risk factors for disease can be longer lasting, for example, smoking; alcohol consumption; a highfat, low-fiber diet; and risky lifestyle in general. When comparing a single life event with those long-term behaviors, the latter seem to be more influential in developing illness. Moreover, the experience of a critical life event is related to coping and social support, whereby these two factors may moderate the stress–illness connection. How can we understand the mechanisms of the stress–illness association? There are three major pathways that link stressful life events to ill health (Figure 2.3). The main pathway places physiological changes as a mediator between origin and outcome, in particular, changes of immune parameters and endocrine and cardiovascular reactivity. Recent research, for example, in the field of psychoneuroimmunology, has documented progress in identifying bodily responses to stress that constitute precursors of disease (Cohen, Janicki-Deverts, & Miller, 2007; Kario, McEwen, & Pickering, 2003; KiecoltGlaser & Glaser, 2010; Steptoe, 2010; Steptoe, Hamer, & Chida, 2007). Endocrine and cardiovascular reactivity, as expressed in blood pressure, heart rate, or catecholamine excretion, is considered a stress-based codeterminant of cardiovascular disease, including myocardial infarcts. The amount of reactivity, however, is not exclusively governed by the stress experience. Rather, it is moderated by genes, personality, age, and gender, among others. The other major pathway is represented by healthcompromising behaviors. People under stress might want to relieve their tension by consuming more tobacco, illicit drugs, or alcohol. They feel too absorbed by their stress to monitor their diets and maintain other preventive behaviors. Adherence to routine self-care might suffer during a stress episode. Among smokers, stress may increase the number of cigarettes consumed, as well as the intensity of smoking by deep inhaling. When under stress, women seem to be more likely to engage in unhealthy eating

38

Causal and Mediating Psychosocial Factors

Health-Compromising Behaviors Smoking Alcohol No exercise Sleep deprivation Unbalanced diet, etc.

Stressful Life Events

Illness Indicators

Severity

Physiological Changes

Subjective complaints Physical symptoms

Impact

Immune suppression

Duration

Cardiovascular and

Medical diagnosis

Controllability

Endocrine reactivity

Physiological measures Work absenteeism, etc.

Predictability

Negative Affect Rumination Depressed mood Anger Anxiety Loneliness, etc.

Figure 2.3 Mediators between stressful life events and ill health (excluding other major moderators or mediators, such as personality, appraisals, coping, and social support)

behaviors, whereas men tend to turn to drinking and illicit drug use (Weidner & Cain, 2003). A third pathway pertains to all kinds of negative affect often associated with experiencing stress. Constant rumination, worrying, anxiety, pessimism, depression, and anger are health compromising in the long run. Optimism is related to good health, whereas depression can be a precursor of illness. The mechanism of pathogenesis operates through physiological changes, including immune suppression and blood pressure elevations. Depression may be a general risk factor for premature death. The evidence for mortality effects is most compelling for cardiac disease. Studies indicate that cardiac patients who were depressed while in the hospital were more likely to die of cardiac causes than those who were not depressed. However, most research in this area fails to include control variables, such as physical illness at baseline, smoking, or alcohol abuse (Diener & Chan, 2011; Pressman & Cohen, 2005; Segerstrom, 2001; Steptoe, Dockray, & Wardle, 2009). Figure 2.3 gives a simplified view of mediating effects. In addition, moderator effects can emerge, for example, a synergistic relationship between stress, risk behaviors, and ill health. To reduce its complexity, personality, appraisals, coping, and social support were also not considered in the figure. Efforts in contemporary life event research aim at a better understanding of the linkage between stress and the manifestation of illness. Research striving to identify single events as the cause of illness often fail. Ideally,

finding a truly causal relationship between a specific stressor (e.g., loss of a loved person) and a specific disease (e.g., breast cancer) would be a breakthrough in this field. The onset of specific diseases has been related frequently to prior stress experience. Tension headache, for example, seems to be closely connected to daily hassles, whereas a link to major life events has not been found. Infectious diseases such as the common cold can be triggered by stress. Prospective studies have shown that some people develop a cold several days after the onset of negative life events. Experimental studies with the intentional administration of cold viruses have found that persons under stress are more likely to develop a cold than relaxed people. In a British common cold unit, Cohen, Tyrrell, and Smith (1991) administered different stress measures, including a stressful life event index based on the past year, to about 400 healthy participants. Then they exposed them to respiratory viruses to see whether they would come down with a cold. Within the experimental group, the number of respiratory infections and clinical colds was related to stress in a dose–response way: The more stressful life events experienced, the higher the likelihood of a cold. Only a small number of studies focus explicitly on selected stressors in relation to a specific disease (e.g., Jacobs & Bovasso, 2000, on early loss and breast cancer; Matsunaga et al., 1999, on sexual abuse and bulimia nervosa). In most studies, either stress (often measured by a life event checklist) or health outcomes (assessed by

Stressful Life Events

symptom checklists) are unspecific. Moreover, methodological inequalities make it difficult to compare research findings directly. Therefore, it is not surprising that research has produced conflicting results. Studies that focus exclusively on physical health outcomes following an event are relatively scarce. This is due partly to methodological limitations of life event research. The repeated demand for prospective rather than retrospective studies can hardly be met. However, in some cases, settings allow for prospective designs. For example, in a study on the effects of job loss, researchers found an increase of rheumatoid arthritis during the time of unemployment (Cobb, 1976). There is some empirical evidence on the connection between stress and arthritis, but this is purely correlational. The problem here is that the main cause of rheumatoid arthritis remains unknown. For diseases whose origin has not been fully discovered, it is difficult to establish a causal role of stress in the pathogenesis. It is commonly assumed that stress is detrimental to health, and different mechanisms of pathogenesis have been described here. But not everyone develops health problems in the face of severe stress. Other factors operate at the same time. A large body of literature is dedicated to interpersonal differences in dealing with aversive situations. In fact, it is almost impossible to examine the effects of stressful life events without considering the various ways of coping with them. As events differ in their nature and impact, so do people differ in their immediate responses to an event. Since the latter belongs to the realm of coping research and is addressed elsewhere in this book, we focus only on some characteristics and health effects of stressful events and the challenges they pose. Posttraumatic Stress Disorder A frequent effect of a disaster is posttraumatic stress disorder (PTSD). It is usually defined as a pattern of symptoms following exposure to a stressful life event that sets off clinically significant distress or impairment of human functioning. The concept has previously been described in different terms, in particular in the context of railway accidents in the 19th century and as shell shock during World War I. At that time, 7–10% of the officers and 3–4% of the other ranks in the British Army were diagnosed with mental breakdowns. In World War II, mental disorder accounted for 31% of medical discharges from the British Army. Of all U.S. Vietnam veterans, an estimated 15% (450,000) were diagnosed with PTSD (Newman, 2001). Numbers of afflicted people vary considerably with event

39

characteristics and predisaster and postdisaster circumstances (Bonanno et al., 2010). Diagnostic criteria for PTSD are provided in the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association [DSM -IV -TR], 2000). According to this manual, PTSD may follow exposure to a traumatic event that the person has experienced or witnessed. Such an incident may have involved actual or threatened death or serious injury or a threat to the physical integrity of self or others. The individual should have reacted with intense fear, helplessness, or horror. To be diagnosed as a PTSD case, the person should be persistently reexperiencing the traumatic event, such as living through repetitive and intrusive distressing recollections of the event, experiencing incessant upsetting dreams of the incident, acting or feeling as if the incident was recurring, suffering intense distress at exposure to internal or external cues that symbolize or resemble an aspect of the traumatic event, or being subjected to physiological reactivity on exposure to such cues. There should be evidence of continuing avoidance of traumarelated stimuli and numbing of general responsiveness (not present before the trauma), as indicated by three or more of the following: efforts to avoid thoughts, feelings, or conversations connected with the trauma; efforts to avoid activities, places, or people that arouse recollections of the trauma; failure to recall an important aspect of the trauma; markedly diminished interest or participation in significant activities; a feeling of detachment or estrangement from others; a restricted range of emotions, and a sense of a foreshortened future. There should also be at least two persistent symptoms of increased arousal (not present before the trauma), such as difficulty falling or staying asleep, irritability or outbursts of anger, difficulty concentrating, hypervigilance, and an exaggerated startle response. These symptoms should have persisted for at least 1 month, causing significant distress or impairment of functioning (Newman, 2001). DSM-5 will appear in 2013 (see www.dsm5.org). Several measures have been developed to quantify aspects of PTSD. The Horowitz Impact of Event Scale (Horowitz, Wilner, & Alvarez, 1979) is a 15-item selfrating scale, with intrusion and avoidance as subscales. It provides a subjective estimate of the frequency of intrusive recall of a traumatic event and of attempts to avoid such recall. The inventory has been used frequently in research as a measure of postevent psychological disturbance, but it is not suitable to result in a clinical case definition, according to the DSM standards. Closer to this aim is the scale by Davidson and colleagues (1997),

40

Causal and Mediating Psychosocial Factors

who developed a 17-item self-rating scale for PTSD that was designed to measure each DSM-IV symptom on frequency and severity scales. PTSD is often assessed with this stressor-specific checklist that is linked to a specific traumatic exposure (e.g., “the events of September 11”). Respondents score each symptom experienced during the past month on a 5-point scale, and a sum score beyond a given cutoff point is indicative of probable PTSD. There also are some measures for assessing PTSD in children, such as (a) Darryl, a cartoon-based measure of cardinal posttraumatic stress symptoms in school-age children (Neugebauer et al., 1999); (b) the Child Posttraumatic Stress Reaction Index (Shannon, Lonigan, Finch, & Taylor, 1994); and (c) the Post-Traumatic Stress Disorder Reaction Index-Child Version (Pynoos et al., 1987). Resilience and Posttraumatic Growth In their comprehensive overview of psychological disaster research, Bonanno and associates (2010) weigh the costs of disasters in terms of consequences, risks, and resilience. They state that (a) disasters cause serious psychological harm in a minority of exposed survivors; (b) disasters produce multiple patterns of outcome, including psychological resilience; and (c) disaster outcome depends on a combination of risk and resilience factors. People exposed to major life events may evidence depression, anxiety, illness symptoms, PTSD, or behavioral consequences such as substance use. Severe levels of such problems rarely occur in more than one third of exposed victims. Moreover, multiple longitudinal patterns of outcome have been observed. Authors have observed stability and change of symptoms over time that can be categorized into four groups labeled chronicity, delayed, recovery, and resilience (see Figure 2.4). For example, in a study by Bonanno, Rennike, and Dekel (2005) on patterns of outcome among high-exposure survivors of the

60 50

Chromic Recovered

40 30

Delayed

20

Resilient

10 0 1 Year

2 Years

Figure 2.4 Hypothesized prototypical outcome trajectories after a stressful event

9/11 terrorist attack in New York, they found chronic levels of severe symptoms (PTSD and/or depression) in 29% of this highly exposed sample (chronicity). In a further subsample of 13%, similar levels were attained later on (delayed), whereas in 23%, the initial symptoms were transient and had disappeared after 2 years (recovery). Finally, in 35%, no major symptomatology was observed over the entire 2-year observation period (resilience). The disruptions in normal functioning following a major life event are usually less severe, depending on the level of exposure. Many experience only transient stress, or they maintain a stable trajectory of normal functioning, which means that those who are resilient plus those who recover within a 2-year period after the event constitute the majority (more than half) of the sample of exposed survivors (Bonanno et al., 2010). This raises questions about the factors that are responsible for the individual differences in outcomes after stressful life events. Such factors can be found in the context of the event, the actual level of affliction (proximal, distal, direct, indirect victimization), and later events in the aftermath of the disaster. Moreover, there are predisaster characteristics, such as personal vulnerability, social embeddedness, overall coping capabilities, and resources that come into play when disaster strikes. There is no single dominant determinant that predicts the outcomes. All variables mentioned exert only small to moderate effects, and one has to look at the interplay of all risk and resilience factors to study the mechanisms involved (Bonanno et al., 2010). Resilient persons bend without breaking, and they quickly rebound from adversity, which reflects the “ordinary magic” of human adaptive systems (Masten, 2001). The concept of resilience is a multifaceted construct that also comprises several other personal resources, such as self-esteem, optimism, coping strategies, and good social relations (Condly, 2006). Resilience is usually understood as the ability to resist or to bounce back from adversity (Bonanno et al., 2010; Tedeschi & Calhoun, 1995). Thus, resilience refers to rapidly returning to baseline functioning after exposure to trauma. One cannot be resilient if there is no stressor. However, self-efficacy can be present if the stressor has not yet happened or will not occur at all, such as when an individual thinks about and plans his or her future with no concrete challenges to fear (Berry & West, 1993). This way, having high self-efficacy beliefs can have a positive impact on motivational processes, even if specific stressors are absent. Being self-efficacious may, however, also be helpful to show resilience in the face of adversity. By activating

Stressful Life Events

affective, motivational, and behavioral mechanisms in taxing situations, self-efficacy beliefs can promote resilience. Self-efficacy has therefore sometimes been conceptualized as one component of resilience (Rutter, 1987; Werner, 1982). The opposite pole to resilience is PTSD, which is negatively related to self-efficacy. Cross-sectional studies suggest medium to large effects on self-efficacy on general distress, severity, and frequency of PTSD symptoms (weighted r values range from −.36 to −.77), whereas longitudinal studies indicate large effects on general distress and PTSD symptom severity (weighted r values range from −.55 to −.62) (Luszczynska, Benight, & Cieslak, 2009). Resilience refers to resisting stress or bouncing back from adversity. Posttraumatic growth is not the same. It reflects personal changes that result from coping with stressful life events and their aftermath. It is thus a positive outcome that may coexist with PTSD for a while, but in the long run, growth becomes dominant. Janoff-Bulman (2006) describes three kinds of growth processes: strength through suffering, existential reevaluation, and psychological preparedness. Calhoun, Cann, and Tedeschi (2010) have built on this work and developed a model that includes (a) cognitive processing, engagement, or rumination; (b) disclosure of concerns surrounding the events; (c) the reactions of others to selfdisclosures; (d) the sociocultural context in which traumas occur and attempts to process, disclose, and resolve trauma; (e) the personal dispositions of the victims and the degree to which they are resilient; and (f) whether events facilitate or inhibit such processes (Tedeschi & McNally, 2011). The Posttraumatic Growth Inventory (PTGI; Tedeschi & Calhoun, 1996) has been designed to assess five domains of personal growth: renewed appreciation of life, new possibilities, enhanced personal strength, improved relationships with others, and spiritual change. A great deal of research has identified substantial numbers of trauma survivors who score high on some dimensions of this inventory, allowing the conclusion that posttraumatic growth is a common phenomenon that exists parallel to PTSD.

RESEARCH EXAMPLES OF STRESSFUL LIFE EVENTS The following examples stem from a large body of research on a variety of stressful negative life events. Starting with disasters, we briefly characterize the impact

41

of natural and technological (human-made) disasters on individuals and communities and present some findings regarding their health-hazard potential. A special case of man-made disasters, namely, war and terror, is highlighted. Further, we move on to more individual events that are characterized by personal harm and loss, such as conjugal bereavement. The relationship between stressful life events and the individual’s response is indirect in that it is mediated by the perception and evaluation of the disaster impact on the individual, as well as the community level. As shown in the empirical data, attempts to examine psychological and physiological correlates of disastrous traumatic events need to allow for short-term as well as long-term analyses of the effects in order to cover full symptomatology. Several characteristics of disasters may influence their psychological outcomes. Severe impairment of psychosocial functioning is more often observed among mass violence survivors (67%), as compared to those who experienced natural (34%) or technological (39%) disasters (Norris, Friedman, et al., 2002). The most frequently observed negative psychological outcomes include PTSD (up to 68% of disaster studies); depression (36% of studies); somatic health problems and concerns (23% of studies); and chronic problems with work, family, and social tasks (10% of studies). The first year after the disaster represents the peak of the symptoms, but the negative impact declines over time, with 79% of longitudinal studies showing a downward trend in evaluated symptoms. Effects of different types of disasters have higher influence on survivors’ well-being if they take place in developing countries (compared to developed countries; Norris, Friedman, et al., 2002). Although earlier evidence indicated that the psychological maladjustment after severe stress may have a delayed onset, recent meta-analyses indicate that the delayed onset of PTSD in the absence of any previous symptoms is very rare (Andrews, Brewin, Philpott, & Stewart, 2007). Delayed onsets, such as exacerbations or reactivations of earlier symptoms, represent approximately 38% of cases of PTSD in military personnel and 15% of PTSD cases among civilians (Andrews et al., 2007). Besides survivors themselves, those who offer aid to the survivors (both professionals and volunteers) are influenced by the disaster. Systematic reviews suggest that those who are volunteer helpers tend to develop higher levels of mental health problems, in particular if they identified friends among the victims, had experienced higher exposure to atrocities during disaster work, and had lower postdisaster support (Thormar et al., 2010).

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Causal and Mediating Psychosocial Factors

Natural Disasters Intense, uncontrollable, and powerful natural forces can dramatically change the lives of thousands of people in a blink of an eye. The devastating effects of sudden natural disasters, such as earthquakes, hurricanes, tornadoes, tsunamis, volcano eruptions, floods, and landslides, have been witnessed many times in recent history. One example is Hurricane Katrina. Being one of the strongest hurricanes ever recorded, Katrina caused approximately 1,500 casualties (with at least 135 people remaining missing; Louisiana Department of Health & Hospitals, 2006), making it the deadliest U.S. hurricane in almost 80 years. The predictability and impact of natural disasters vary greatly. Every year, the Southeastern United States and neighboring countries experience hurricane season. People living in such areas are able to take precautions before a hurricane hits. Although such an event is predictable to some degree, neither the course of the hurricane nor its devastating effects can be influenced. In contrast, earthquakes are virtually unpredictable and take people by surprise. Often lasting only a few seconds or minutes, the destruction of property and the disruption of lives can take months or even years to restore, if at all. Both short- and long-term psychological and physiological effects of disasters have been widely studied. Large-scale disasters leave behind at least three groups of victims: (1) those who witnessed the event, (2) those who were absent then but are affected by the devastation, and (3) rescue personnel. Such extreme experiences have often been studied in trauma research. Persons who were exposed to extreme stressors are prone to develop PTSD. Systematic reviews indicate that the prevalence of negative psychological consequences may be lower among victims of natural disasters than among those who survived technological or man-made disasters (Neria, Nandi, & Galea, 2008). This fact may result from methodological issues: Natural disaster studies include populations from broader geographic areas, which may consist of both those who were severely exposed and those who were only indirectly or weakly exposed. Indeed, as the distance from the epicenter of the disaster increases, the rates of negative consequences decline (Basoglu, Kilic, Salcioglu, & Livanou, 2004). In adult populations, rates of PTSD diagnosis vary from 3% to 60% (Neria et al., 2008). Further, the dynamics of symptoms change over time, with intrusion and arousal symptoms of PTSD declining and an increase of avoidance symptoms (cf. Neria et al., 2008). The negative consequences of natural disasters are more frequently observed among vulnerable populations,

such as adolescents, in particular when the disaster takes place in developing countries. Among youth victims of the 2008 Wenchuan earthquake, 16% reported clinical PTSD, 41% showed elevated anxiety, and 25% had clinical depression at 1 year after the disaster (Fan, Zhang, Yang, Mo, & Liu, 2011). Similar conclusions about more harmful impacts of the natural disasters among children and adolescents may be found in systematic reviews (Neria et al., 2008). The negative impact of natural disasters on mental health is moderated by individual factors, such as female gender and younger age (cf. Fan et al., 2011). Natural disasters may result in personal physical injury and household illness. For example, up to 4% of injury and 16% of household illness was found among Hurricane Ike survivors (Norris, Sherrieb, & Galea, 2010). Sustaining injury or having an injured family member explains global distress, PTSD, days of disability, and perceived need for care (Norris et al., 2010). Briere and Elliot (2000) give an impressive overview of a number of studies dealing with the potential effects of exposure to natural disasters (e.g., bushfires; cf. McFarlane, Clayer, & Bookless, 1997). Among the various symptoms that are likely to occur in the aftermath of a natural disaster are anxiety, PTSD, somatic complaints, and substance abuse (Adams & Adams, 1984; McFarlane, Atchison, Rafalowicz, & Papay, 1994). Escobar, Canino, Rubio-Stipec, and Bravo (1992) examined the prevalence of somatization symptoms after a natural disaster in Puerto Rico. They found higher prevalence of medically unexplained physical (e.g., gastrointestinal) and pseudoneurological symptoms (e.g., amnesia, fainting) related to disaster exposure. In a study on the long-term sequelae of natural disasters in the general population of the United States, Briere and Elliot (2000) found that 22% of the participants had been exposed to a natural disaster (earthquake, hurricane, tornado, flood, or fire). Though the mean period from the last disaster exposure until the study took place was 13 years, researchers found current elevations on 6 of 10 scores in the Traumatic Symptom Inventory (Briere, 1995). Type of disaster did not determine the symptomatology, but the disaster characteristics, such as physical injury, fear of death, and property loss, did. Apparently, the number of characteristics people were exposed to played a role in the extent to which symptoms were experienced. Individuals who had suffered all (injury, fear of death, and property loss) scored at clinical levels (see also Rotton, Dubitsky, Milov, White, & Clark, 1997). As the authors conclude from their data, more research efforts should aim at the

Stressful Life Events

long-term effects rather than the immediate sequelae of disaster experience. Finally, a number of studies have looked at the physiological changes in survivors of natural disaster. For example, in a longitudinal study by Trevisan and colleagues (1997), factory workers’ uric acid levels were measured on three occasions within 12 years. In between, a major earthquake interrupted the study, so that some of the participants were measured before and others after the quake. Those workers measured after the quake had significantly lower levels of serum uric acid than those examined before. Seven years later, workers who reported suffering from the aftermath of the quake had elevated levels of uric acid compared to unaffected individuals. Technological Disasters Unlike natural disasters, technological disasters are caused by people. These two types of disasters can be also connected, when a massive natural disaster (e.g., a tsunami) causes a technological disaster (e.g., the Fukushima nuclear accident in Japan, 2011). The occurrence of technological disasters is as difficult to predict as natural forces. In modern civilization, we are surrounded by numerous potential health-threatening technical devices. Although a large number of specific precautionary measures are employed, power plants, giant dams, atomic submarines, and contemporary air traffic harbor a risk of failure with potentially disastrous effects. Among others, the list of technological hazards includes the release of radiation (e.g., Three Mile Island, Chernobyl, Fukushima), leaking toxic waste dumps (e.g., Love Canal), and aviation and maritime accidents, such as oil spills from Exxon Valdez in 1989 and Deepwater Horizon BP in 2010, that led to environmental disasters. Despite similarities between natural and technological disasters as to their unpredictability, uncontrollability, devastation, and impact for the individual and the community, considerable differences may contribute to various mental and physical health outcomes. The prevalence of PTSD among technological disaster survivors varies from 15% to 75%, with a rapid decline over a 1-year period (Neria et al., 2008). By definition, technological disasters could have been prevented. Thus, someone can be blamed for the harm and damage, and anger and frustration can be addressed to authorities or single persons. As Green (1995) argues, because of these characteristics, such events might be more difficult to process than natural disasters, which can be seen as inevitable or fate. Technological disasters are usually followed by abrupt evacuation and long-term

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relocation. For example, the psychosocial consequences within a community affected by an explosion of a factory in Denmark were mild among those who were not evacuated, with 3% of PTSD and 7% of elevated distress at 3 months after the disaster (Elklit, 2007). By contrast, among these who were evacuated and relocated, 15% met PTSD criteria and 35% had elevated distress at 3 months after the explosion (Elklit, 2007). Green (1995) studied the effects of the Buffalo Creek disaster. In winter 1972, a dam constructed from coal mining waste collapsed, releasing millions of gallons of black water and sludge. In the community below the dam, 125 people were killed, and thousands were left homeless. Typical for small communities where people know each other well, many residents lost close friends or family members. Looking at the long-term effects on adults, the results indicate a decrease in the psychopathology over 1 to 3 years. However, even 14 years later, a subset of survivors still showed continuing effects of the traumatic experience. In this vein, Arata, Picou, Johnson, and McNally (2000) examined the effects of the Exxon Valdez oil spill on commercial fishers 6 years after the incident. According to their hypotheses, the fishers had higher levels of depression, anxiety, and PTSD symptoms than a normative sample. One fifth of the fishers showed clinically significant symptoms of anxiety, and more than one third suffered from depression and/or PTSD. Despite methodological limitations, findings are consistent with other research, suggesting chronic impairment as a result of technological disasters (Freudenburg & Jones, 1991; Green, 1995). PTSD as a consequence of toxic spills was found in several studies (e.g., Freed, Bowler, & Fleming, 1998). War and Terrorism Research on the health effects of stressful life events started with recording reactions to a war experience. During the two world wars, psychiatrists examined shell shock and battle fatigue among soldiers. Afterward, long-term effects of the Holocaust and the wars in Vietnam and Korea were studied as well. PTSD is one of the most frequently addressed phenomena in this line of research. Studies focus mainly on specific aspects of the war experience rather than the event as a whole. For example, there is a large body of research literature on torture victims (Neria, Solomon, & Dekel, 2000), Holocaust survivors (e.g., Lomranz, 1995), and combat stress (e.g., Solomon, 1995). There is overlap with studies on migration effects, since ethnic conflicts, combat, and political

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persecution are among the most common reasons for people to emigrate. Psychological and physical impairment can transpire even decades after the traumatic experience. Landau and Litwin (2000) compared a community-based sample of Holocaust survivors at the age of 75 and older with control persons of a similar age and sociocultural background. The assessment of vulnerability included physical as well as mental health and PTSD. The findings suggest that extremely traumatic events have long-lasting effects on the victims. Men who survived demonstrated a higher prevalence of PTSD, whereas women reported greater health-related difficulties and poorer health (Wagner, Wolfe, Rotnitsky, Proctor, & Ericson, 2000). In line with the former findings, Falger and colleagues (1992) found among 147 Dutch World War II resistance veterans the highest scores on cardiovascular disease (e.g., angina pectoris, Type A behavior, life stressors, and vital exhaustion) compared to age-matched patients with myocardial infarction and patients who underwent surgery. Moreover, veterans diagnosed with PTSD reported more risk factors. Eberly and Engdahl (1991) analyzed medical and psychiatric data for U.S. former prisoners of war (World War II and Korean War). In comparison with the general population, PTSD prevalence rates were greatly elevated, whereas lifetime prevalence rates of depressive disorders were only moderately increased. However, the authors did not find evidence for generally higher rates of hypertension, diabetes, myocardial infarction, alcoholism, and other psychiatric disorders. Within the study group, those former prisoners who had suffered massive weight loss demonstrated a greater number of psychiatric disorders than their comrades. More evidence for the long-term effects of trauma comes from a study by Desivilya, Gal, and Ayalon (1996), who investigated the effects of early trauma in adolescence for victims’ mental health and adaptation in later life. The critical incident took place in 1974, in a small town close to the border of Israel and Lebanon, when hundreds of hostages were taken during a terrorist attack, most of them adolescents. Participants in the study displayed significantly more health problems 17 years later than the nontraumatized individuals in the control group. Also, survivors of the early traumatic event later showed greater vulnerability to psychological difficulties when Israel was attacked by Iraqi Scud missiles in 1991 (see also Ben-Zur & Zeidner, 1991; Zeidner & Hammer, 1992). As the authors conclude, the scars of the event remain for a lifetime.

These studies, together with other empirical evidence on the effects of traumatic events, underline the importance of long-term observation of health outcomes in traumatized individuals to facilitate appropriate intervention and rehabilitation programs beyond acute needs for help. Numerous studies have examined the aftermath of the 9/11/2001 terrorist attack on the World Trade Center (WTC) in New York, where two airplanes were piloted directly into the two towers (e.g., Berninger et al., 2010; Bonanno, Galea, Bucciarelli, & Vlahow, 2006; Bowler et al., 2010, in press; Farfel et al., 2008; Galea et al., 2003). Research evaluating the effects of terrorism and other man-made disasters dealt most frequently with 9/11 terrorist attacks (over 40 studies, Neria et al., 2008) and the 1995 Oklahoma City bombing. In the general population, the negative consequences of such terrorist attacks are relatively low and declining over time, with 7.5% at 1 month postdisaster to 0.6% at 6 months after the exposure. The effects are more severe, though, when minority and low-income populations are considered, with a prevalence of up to 10.2% at 1 year postdisaster (cf. Neria et al., 2008). Recent research stresses the importance of accounting for posttraumatic symptoms other than intrusions, arousal, and avoidance (Chipman, Palmieri, Canetti, Johnson, & Hobfoll, 2011). Clinically significant distress or impairment of major domains of life activity, such as social relations, occupational activities, or other areas of functioning, may be more frequent than the presence of the three core PTSD symptoms, as shown in a study of 1,001 Israeli survivors of missile attacks. Functional impairment is predicted by resource losses, experiencing personal injury, major stress situations in the past year, and poorer health (Chipman et al., 2011). A large database has been created by the World Trade Center Health Registry (WTCHR) that was established in 2002 by the New York City Department of Health and Mental Hygiene to address the need for longitudinal follow-up beyond the immediate, acute experiences of the mental and physical effects of the WTC disaster. The baseline (Wave 1) evaluation took place in 2003 and 2004, and the first complete follow-up evaluation (Wave 2) took place in 2006 and 2007. A total of 71,437 individuals participated in the registry, of whom 30,665 were rescue and recovery workers. Among the latter were 3,757 police responders, 3,196 firefighters, 1,314 emergency medical services workers, 4,363 construction or engineering personnel, 2,117 sanitation workers, and 7,389 affiliated and unaffiliated volunteers (Farfel et al., 2008).

Stressful Life Events

Berninger and associates (2010) found that 15.5% of firefighters reported probable PTSD immediately after 9/11, which decreased to 8.6% at Wave 1 but showed an increase to 11.1% at Wave 2. Nearly half of the firefighter PTSD cases had delayed onset (Berninger et al., 2010). Along with these reports of probable PTSD, firefighters’ risk for elevated PTSD increased over time, from 9.8% in Wave 1 to 10.6% in Wave 2 (Berninger et al., 2010). Given the consistent higher rates of PTSD at Wave 2, 3 to 4 years after 9/11/01, Berninger and colleagues postulate that the nature of the work performed by rescue and recovery groups may have been differentially traumatic. Risk factors for PTSD were identified not only for firefighters (Berninger et al., 2010) but also for police first responders (Bowler et al., 2010). Such risk factors were, among others, level of exposition (presence in WTC Towers on that day, witnessing horror), but there were also demographic risks, such as older age, ethnicity, or education less than a college degree (Bowler et al., in press). Other risk factors for developing PTSD in diverse subpopulations (rescue and recovery workers, police, firefighters, general public) include female gender, alcohol misuse, death of a family member, injury to self or coworker, prior depression, labile personality, trait dissociation, acute fear, and panic symptoms, all of them contributing to increased levels of PTSD. With over 2 million U.S. military service members deployed to ongoing conflicts in Iraq and Afghanistan, the impact of war on mental health and social functioning became a burning issue. Military conflict involvement inflicts psychological casualties, with co-occurring PTSD and mild traumatic brain injury among those involved in combat operations (Wells et al., 2011). The costs of war involvement include separation from families. Thus, the effects are observed among those who are actively participating in combat and their spouses (de Burgh, White, Fear, & Iversen, 2011). A systematic review of the literature of the effects of military deployment on families indicated increased marital dysfunction, marital distress, and elevated psychological morbidity among spouses. Longer deployments and extensions of deployments were predictive of more severe symptoms (de Burgh et al., 2011). The decline in marital adjustment, in turn, predicts problems with parenting behaviors among military personnel (Gewirtz, Polusny, DeGarmo, Khaylis, & Erbes, 2010). Elevated PTSD symptoms among military personnel are, in turn, predictive of higher alcohol use and lower general social adjustment (Gewirtz et al., 2010).

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Conjugal Loss and Bereavement The cognitive appraisal of loss is one of the major psychological categories in the explanation of stress reactions (Lazarus, 1966, 1991). This can occur in many ways: loss of health, job, property, and loved ones. For most stressful life events, loss is an inherent characteristic. This section focuses on conjugal loss and the health effects resulting from bereavement. Loss of a spouse is regarded as the most stressful experience on the Social Readjustment Rating Scale (SRRS) of Holmes and Rahe (1967). Considering the frequency and likelihood of such an event among those who have close long-term relationships, the relevance of research in this field becomes evident. In fact, the best way to protect oneself from that experience is to die either before or at the same time as the partner. The effects of bereavement on morbidity and mortality have been widely studied (Stroebe, Schut, & Stroebe, 2007). Complicated grief after bereavement is a common phenomenon that is mainly characterized by intrusive thoughts, yearning and searching for the deceased person, and excessive loneliness since the death (Hawton, 2007). Bartrop, Luckhurst, Lazarus, Kiloh, and Penny (1977) described immunological changes associated with conjugal loss. The death of a spouse is suspected to lead to increased mortality in response to diseases that are presumed to depress the immune function, such as reduced lymphoproliferative responses and impaired natural killer cell activity (Segerstrom & Miller, 2004). Gender and age differences in responding to the death of a spouse have received a great deal of attention in scientific research. Considerable differences have been found between widows and widowers regarding physical and psychological reactions to an event, as well as the coping strategies. One set of studies suggests that men suffer more after losing their partner than women, whereas others report more health complaints of bereaved women. E. Miller and Wortman (2002) suggest examining the impact of loss for the one who is left behind. One might conclude that women should be at more of a disadvantage. Is there any evidence for such an assumption? Traditionally, women depend economically on their husbands. Although norms and values regarding selfdetermination and economic independence of women have greatly changed over the past decades, especially elderly couples are more bound to traditional roles. Therefore, in addition to the loss of the intimate partner, women also face loss of income and financial security, which in turn could enhance their vulnerability for illness and the frequency of ailments. With increasing age, conjugal loss becomes a

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normative life event more often for widows, who outlive their husbands. In turn, widowers have a greater chance to engage in a new romantic relationship simply because there are more potential partners available. These objective disadvantages for widows obviously do not translate into greater health impairment. In contrast, bereaved men are at higher risk for mental health problems, morbidity, and mortality. Can losing a spouse be so detrimental that it results in the premature death of the survivor? For decades, studies that have addressed this question have found, on average, that the mortality risk for widows and widowers is increased, compared to those who do not experience this loss (see Stroebe, Stroebe, & Hansson, 2000). The risk seems to be greatest for men during the first 6 months of bereavement. There may be several reasons for this gender difference: Men typically have a smaller social network than women, so their loss cuts more deeply into their network (Weidner & Cain, 2003). Also, bereavement occurs at an older age for men than for women because men, on average, die earlier than their spouses, due to age differences in couples and biological gender differences in longevity. As a result, the death of a wife leaves a man who is older and more in need for support. Moreover, men usually confide in a spouse as their only intimate partner, whereas women cultivate a larger network of family members and friends, to whom they find it easier to turn in times of need. This higher social integration and support may buffer the stressful experience of losing their husbands. In the Terman Life-Cycle Study, Tucker, Schwartz, Clark, and Friedman (1999) examined the relationship between social ties and mortality in 697 men and 544 women at four assessment points over a period of 51 years (1940–1991). They found that men who were married the whole time had a significantly lower mortality risk than those who were separated, divorced, or widowed or who had remarried. For women, no such effect of marital status emerged. Traumatic grief has been shown to be a risk factor for mental and physical morbidity (E. Miller & Wortman, 2002). When widowers feel socially isolated during their grieving process, they may develop depression and loneliness, which in turn may lead to more severe consequences. For example, in some cases men commit suicide. This is thought to happen five times more often to widowers than to widows, and there is also evidence for suicidal ideation after bereavement (Stroebe, Stroebe, & Abakoumkin, 2005). In other cases, widowers’ immune systems or cardiovascular reactivity may be affected in the long run, resulting in illness and eventually in death. The

mechanism of pathogenesis needs to be further explored. Not only is death from all causes higher among widowers, but also specific causes of death, such as suicide. Widowed individuals show impaired psychological and social functioning, including depression, and some studies report a significant decline in physical health, mainly for men. Frequency of sick days, use of ambulant physician services, and onset of illness according to medical diagnosis seem to be about the same for widowed persons and for controls. Schwarzer and Rieckmann (2002), examining the effects of social support on cardiovascular disease and mortality, found that cardiac events are more frequent among isolated and unsupported widowers. However, there is not much evidence that the onset of specific diseases, such as cancer or coronary heart disease, is actually caused or triggered by conjugal loss or a different kind of bereavement. This may be explained by the long time span of pathogenesis. For example, it takes many years to develop chronic degenerative diseases, and other factors that contribute synergistically to illness may emerge during this time. Severe stressful life events may be interlinked when one type of event results from the other. An example is surviving a natural disaster and losing a spouse in this disaster. Interviews with people who lost their spouses during the 2004 tsunami indicated that those who were also directly exposed to the tsunami had very high levels of mental health problems at 2 years after the event (Kristensen, Weisaeth, & Heir, 2009). Prolonged grief disorder was diagnosed among 23%, major depressive disorder among 25%, and PTSD among 34%. Among those who lost a spouse but were not directly exposed to the tsunami, the rates of mental health problems were lower (14% with prolonged grief disorder, 10% with major depressive disorder, and 5% with PTSD). The findings also indicate that the types of symptoms following sudden loss of a spouse are dominated by the prolonged grief disorder, when compared to a combination of sudden loss of spouse and natural disaster exposure (Kristensen et al., 2009). The level of combat exposure and number of events of being engaged in direct combat are among predictors of higher PTSD and depression symptoms’ intensity and number, higher alcohol abuse, more anger, and more frequent relationship problems (Maguen et al., 2010). The Role of Posttraumatic Cognitions in Explaining the Effect of Severe Stress on Psychological Adjustment Peritraumatic and posttraumatic risk factors (including exposure level, loss of resources, or stressful events) are often seen as crucial determinants of psychopathology

Stressful Life Events

or the psychological adjustment of survivors (Brewin, Andrews, & Valentine, 2000; Ozer, Best, Lipsey, & Weiss, 2008). Studies suggest that over longer time periods, the direct effects of these variables may become negligible. In fact, trauma burden may affect the adaptation process indirectly through trauma-related cognitions. Self-efficacy may be seen as a proximal determinant of health-related outcomes of a traumatic event. Alternatively, effects of self-efficacy beliefs may be mediated by other cognitions or social resources; therefore, efficacy beliefs may affect stress outcomes indirectly (cf. enabling and cultivation hypotheses; Schwarzer & Knoll, 2007). For example, efficacy affects selection of coping strategies (Benight & Bandura, 2004). More efficacious individuals may employ action-oriented coping strategies resulting in more effective management of some controllable difficulties arising after trauma. Thus, self-efficacy may be either directly related to stress outcomes (e.g., negative emotions, distress), or its effects may be mediated by other variables, such as coping or support seeking (Schwarzer & Knoll, 2007). Posttraumatic recovery self-efficacy may be a critical mediator, which explains the relationships between the exposure to trauma and posttraumatic distress symptoms. Similar mediation patterns were observed across samples of survivors of different traumatic events, such as motor vehicle trauma or surviving Hurricane Katrina (Luszczynska, Benight, Cieslak, et al., 2009). A metaanalysis of the associations between self-efficacy and health indices among survivors of traumatic stress indicated that weighted r values for the longitudinal studies of psychological outcomes suggested large effects for self-efficacy on subsequently measured general distress, as well as PTSD symptom severity. The effect sizes for cross-sectional studies that focused on PTSD symptom severity were moderate to large. Self-efficacy of trauma survivors was also predictive of acute stress disorder symptoms, general psychological distress, depression, and substance abuse (Luszczynska, Benight, & Cieslak, 2009). Further, self-efficacy beliefs were related to lower selfreported somatic health indices, including lower rheumatoid arthritis–related disability, lower disability related to chronic pain, lower sickness-related disability, and better self-care in chronic disease (e.g., adherence to medication and blood monitoring, following diet and exercise regimen) in survivors of war-related trauma (Luszczynska, Benight, & Cieslak, 2009). Research indicates the powerful role of cognitive processes during and after trauma in fostering survivors’ mental health. These factors may include the level of

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cognitive processing during the traumatic event, memory disorganization, negative appraisals of traumatic stress and its sequelae, thought suppression, and ruminations about trauma and its consequences (Ehring, Ehlers, & Glucksman, 2008). Other research targeted such cognitions as self-blame, shame, lack of intimacy, lack of control, and guilt-related cognitions (Resick et al., 2008). An application of treatment strategies targeting survivors’ cognitions induces large changes of posttraumatic cognitions and, subsequently, facilitates adaptation (Resick et al., 2008). One of the most frequently studied cognitive processes refers to peritraumatic dissociation. Breh and Seidler (2007) identified 35 studies discussing the relationships between dissociation during traumatic stress and subsequent distress, and found moderate effects (r from .34 to .36). It is noteworthy, however, that a vast majority of traumatic stress research focuses on negative or maladaptive cognitions. This research assumes a simple, direct link between negative cognitions and recovery or development of posttraumatic distress. Recent studies suggest, however, that the effects of negative posttraumatic cognitions on mental health may be mediated by survivors’ posttraumatic recovery self-efficacy beliefs (Cieslak, Benight, & Lehman, 2008). As compared to pretraumatic, peritraumatic, and posttraumatic risk factors (Brewin et al., 2000; Ozer et al., 2008) that encompass unchangeable characteristics of events, focusing on cognitions provides useful guidelines for treatment. Building up self-efficacy may be particularly beneficial for survivors who report exposure to severe trauma, significant loss of resources, and more negative than positive stressful life experiences, as their beliefs about their ability to deal with adversities will be significantly challenged by these events (“stress inoculation hypothesis”). Risk Factors for Maladjustment After Traumatic Stress Recent meta-analyses focused on psychosocial factors that increase the risk of distress after severe stressful events. Ozer and colleagues (2008) showed that risk of developing PTSD is higher if a survivor experienced another trauma before (weighted r = .17), suffered from prior adjustment problems (weighted r = .17), had a family of origin with mental health problems (weighted r = .17), perceived stronger life threat during the traumatic event (weighted r = .26), showed stronger emotional response during exposure to stress (weighted r = .26), and perceived lower social support after trauma (weighted r = −.28).

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Relationship Between Psychological and Physiological Changes Following Major Stressful Events Dysregulation of the hypothalamic pituitary adrenal (HPA) axis has been found in several disorders, including PTSD and depression (Bao, Meynen, & Swaab, 2008; Yehuda, Golier, & Kaufman, 2005). Change in cortisol secretion is among the most frequent aspects of physiological response to severe stress. Although an increase in cortisol secretion is considered an adaptive stress response under acute situations, chronic disruption of cortisol regulation can be physically harmful (Sapolsky, Romero, & Munck, 2000). Ample evidence shows that elevated cortisol levels have catabolic, lipogenic, antireproductive, and immunosuppressive effects. Longitudinally, the relationship between cortisol and posttraumatic distress could be viewed as bidirectional. On the one hand, an altered cortisol response (measured within days after trauma) may predict subsequent PTSD. For example, a study on the effects of cortisol secretion sampled during the 24 hours after motor vehicle trauma showed that lower cortisol levels predict the development of more severe PTSD symptoms at 1 month after a motor vehicle accident (Delahanty, Raimonde, & Spoonster, 2000). However, in another study, cortisol levels (measured on admission to an emergency room, 1 and 5 months later) did not predict PTSD diagnosis 5 months after trauma (Shalev et al., 2008). On the other hand, elevated posttraumatic distress may evoke changes in subsequently measured cortisol. Individuals suffering from PTSD symptoms have disturbed sleep patterns (Spoormaker & Montgomery, 2008), which result in abnormal cortisol secretion on the days following such symptoms (cf. Vgontzas & Chrousos, 2002). Therefore, PTSD symptoms may affect subsequent diurnal cortisol secretion. A meta-analysis of cross-sectional studies investigating cortisol secretion among trauma survivors indicated that long-term effects of trauma include lower morning cortisol, higher afternoon and evening cortisol, and higher total daily cortisol output (G. E. Miller, Chen, & Zhou, 2007). Further, meta-analyses suggest that changes in the diurnal cortisol secretion depend on the time elapsed since trauma exposure. Higher output is expected in the months directly after trauma and a reverse pattern over longer periods postevent (G. E. Miller et al., 2007). The dynamics of observed changes depend not only on time elapsed since the trauma but also on co-occurring posttraumatic distress (G. E. Miller et al., 2007). Longitudinal studies conducted among motor vehicle accident survivors show that people with higher 1-month total output of cortisol during daytime reported higher

posttraumatic distress at that same data collection phase and at 3 months after the accident (Cieslak, Benight, Luszczynska, & Laudenslager, in press). These results are in line with findings indicating higher diurnal cortisol output among survivors who have been recently exposed to trauma (G. E. Miller et al., 2007). Further, survivors with high posttraumatic distress 1 month after the accident have low sensitivity of the cortisol secretion system (smaller change in cortisol level during the day) at 3 months after the accident (Cieslak et al., in press). The previously mentioned meta-analysis of cross-sectional studies suggested that flat diurnal profiles are typical of trauma survivors (G. E. Miller et al., 2007). These findings are consistent with research on the effects of disturbed sleep (which may reflect higher PTSD symptoms) on flat profiles of cortisol secretion (cf. Vgontzas & Chrousos, 2002). Hippocampal volume appears to be selectively decreased and hippocampal function impaired among trauma survivors, in particular among those who suffer from PTSD. Decreased volume was observed before and after developing PTSD; thus, the direction of the associations is unclear (Hedges & Woon, 2010). Substance use, particularly alcohol abuse, may represent the missing link between trauma exposure and smaller hippocampus volume, with alcoholism contributing to larger hippocampal volume deficits associated with PTSD (Hedges & Woon, 2010).

STRESSFUL LIFE EVENTS IN THE LIGHT OF GENDER, CULTURE, ETHNICITY, AND AGE Health reactions in the aftermath of a disaster are largely determined by the impact of an event, for example, number of casualties or material damage. As a consequence, if valued resources are threatened or lost, stress occurs (Hobfoll, 1989, 2010; Lazarus, 1966, 1991). However, societal structures as well as cultural norms and values largely determine the way individuals respond to the incident. Although it is sometimes believed that such valuable goods or resources are the same across populations, we can assume that the weight given to each resource varies with gender, age, or culture. Certain resources and their impact, however, are almost universal. For instance, in all societies, the loss of a loved one is regarded as extremely stressful for the individual. Nevertheless, reactions to the loss of a family member may be multifaceted due to different cultural traditions, religious beliefs, and attitudes toward family. For example, one might assume that in large multigenerational

Stressful Life Events

families with close ties between individuals, family members are better able to support each other in the grief process, compared to small families where the deceased may have been the only confidant for those who are left behind. As often happens, the most widely used psychological principles and theories are derived from research that is anchored in Western scientific practices. Yet, there is overall agreement that, for example, women and men differ in their responses to stressful events. In the same vein, socioeconomic factors have been detected as central to the way individuals cope with adverse situations. Gender roles and economics vary greatly across nations and cultures. Given that gender, socioeconomic status, and culture are often intertwined, methodological problems may be one cause for the relative scarcity of research in this field. However, these differences are rich avenues for study. Gender There is ample evidence for gender differences in response to stressful life events. For example, Karanci, Alkan, Balta, Sucuoglu, and Aksit (1999) found greater levels of distress and more negative life events for women than for men after the 1995 earthquake in Dinal, Turkey. Ben-Zur and Zeidner (1991) found women reporting more anxiety and bodily symptoms than men, as well as higher tension, fear, and depression during the Gulf War. Bar-Tal, Lurie, and Glick (1994) came to a similar result when they investigated the effects of stress on men and women Israeli soldiers. Women’s situational stress assessment and stress experiences were higher than those of the men. The relationship between gender and distress after severe stress are equivocal. Women experience fewer traumatic events such as traffic accidents, nonsexual assaults, witnessing death or injury, disaster, fire, and combat (Tolin & Foa, 2008). However, women report more frequent and/or more severe distress after traffic accidents, nonsexual attacks, combat, war, terrorism, disaster, fire, witnessing death or injury, or experiencing severe illness (average d = 0.28). Gender is unrelated, however, to posttraumatic distress among survivors of child abuse and neglect. These gender differences in terms of posttraumatic adaptation may be specific for anxiety and mood disorders. Men respond with different clusters of symptoms to severe stress, such as symptoms of externalizing disorders (e.g., conduct disorder, substance use; Tolin & Foa, 2008). Although women often report more distress and bodily symptoms than men, one should not conclude that women

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generally lack appropriate coping skills. For example, in response to the death of a spouse, women seem to be more capable than men of overcoming the loss. Since the vast majority of research relies on self-report scales, we presuppose that women have a greater tendency to admit having symptoms such as pain, depression, or negative mood. In Western societies, men are commonly expected to be psychologically and physiologically more resilient than women. Admitting pain or depression would be contradictory to the desired male picture. Keeping that in mind, findings on the causes of death among bereaved men appear in a different light: Risk behavior that either includes or leads to an unhealthy diet or lifestyle (e.g., smoking, drinking, speeding) is again more acceptable for men than for women. Another factor that has to be taken into account is the social support system. The perception, availability, and activation of social support is a major factor in successfully dealing with stress. Women tend to have larger and tighter networks that enable them to seek support from many sources, whereas men often solely rely on their spouses as their support provider (Schwarzer & Knoll, 2007, 2010). Striking evidence for the importance of support as a predictor of negative affect and health complaints after a stressful life event comes from a study on East German migrants (Knoll & Schwarzer, 2002). Women who reported the most social support also reported the fewest health complaints. This effect could not be replicated for the men in the study. Again, this result could partly be due to societal constraints in two ways. First, from a more context-specific perspective, finding work in West Germany was probably more difficult for East German women than for men. The pronounced age effects among women underline this notion. Since older women in the study revealed the highest levels of health complaints and the lowest levels of support, we can assume that environmental (e.g., socioeconomic) factors contributed to either the perception or even the actual reception of social support. Second, as Hobfoll (1998, 2010) argues, men and women are assumed to have different experience with social support. Whereas men are supposed to be more independent and self-reliant, women are expected to seek and provide support for others. Research on gender differences in dealing with life-threatening diseases has contributed considerably to the discussion. Again, differences between men and women are primarily mediated by the social support they seek and receive.

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Gender and Culture If gender differences in response to stressful events follow from culturally defined norms, what does the picture look like in societies that foster different views of masculinity and femininity than Western societies do? From this point of departure, Norris, Perilla, Iba˜nez, and Murphy (2001) conducted a study to identify the causes for higher rates of PTSD among women than among men, as epidemiological research suggests. The authors argue that it is complicated to determine the extent to which sex differences are culturally bound if one does not include distinct societies in the research. Thus, Norris and colleagues (2001) chose two countries with distinguishing cultural heritages and makeup: Mexico, where traditional gender roles are fostered, and the United States, where the roles of women and men are less rigidly defined. Data were collected 6 months after Hurricane Paulina hit Mexico and Hurricane Andrew hit the United States. The findings confirmed the hypothesis that women were more highly distressed by these natural disasters than men. This was especially prominent among Mexican women, who were also most likely to meet the criteria for PTSD. These findings support the hypothesis that traditional cultures amplify gender differences in response to disastrous events. Nevertheless, other external factors may have been influential. As the authors critically state, Mexico does not have sufficient resources to provide for disaster relief, contrary to its wealthier U.S. neighbor. According to COR theory, resourcefulness plays the central role in dealing with stress, even long after the actual event. These findings notwithstanding, biological and social cognitive perspectives cannot be excluded from the discussion. Conclusive evidence for the explanation of culturally bound gender differences is still missing.

Culture and Ethnicity Beyond the discussion of gender differences, probably anyone would agree that cultural standards may have the potential to shape the experience of catastrophic events. In addition, cultural norms and values largely determine the needs of disaster-struck individuals. This becomes especially evident when disaster relief and aid measures are planned and administered in a culture different from those of the rescue personnel. Since most natural disasters occur in underdeveloped countries or regions, this scenario is rather the rule than the exception. Moreover, in pluralistic countries with a

multicultural makeup, such as Canada, the UK, or the United States, rescue personnel are challenged to be prepared for culturally tailored counseling even within their own society. Therefore, culturally sensitive methods and approaches are needed to meet the various needs of different cultural groups (Doherty, 1999). One convenient way of studying the role of culture, ethnicity, and religion in a stressful situation is by comparing different ethnic immigrant groups regarding either the acculturation process or their responses to catastrophic events within the host country. As to the former, acculturation has been regarded as a stressful encounter since newly arrived immigrants face a number of challenges. However, immigrant groups of different nationalities are difficult to compare because the numerous factors that determine acculturation (e.g., socioeconomic equipment or migration history) vary greatly across immigrant groups. The latter approach of studying ethnic differences in response to stressful events was taken by Webster, McDonald, Lewin, and Carr (1995). They conducted a study to scrutinize the effects of natural disasters on immigrants and the host population. In the aftermath of the 1989 Newcastle, Australia, earthquake, the General Health Questionnaire and the Impact of Event Scale for event-related psychological morbidity were administered to immigrants with a non-English background, as well as to Australian-born controls. Data analyses showed greater psychological distress among the non-English group. Among those, women, older people, and those who had experienced dislocation following the earthquake were especially distressed. Other factors, such as personal history of traumatization and age upon arrival, were also found to contribute to increased levels of psychological distress. Cross-cultural studies suggest that perceived risk of being exposed to natural disasters or terrorist events differs across cultures. First, the perceptions of risk do not correspond to actual rates of exposure likelihood. Japanese have higher risk perceptions than Americans and Argentinians, whereas Argentinians have the lowest risk perceptions of terrorism (Gierlach, Belsher, & Beutler, 2010). There is also some evidence that people from different ethnic groups process traumatic stress events differently (Freitag, Grimm, & Schmidt, 2011). For example, Turkish survivors use fewer positive emotion words and more negative emotion words in discussing traumatic events than Western Europeans (e.g., Germans), but they also use more words indicating insight. Those differences may contribute to the measurement bias among trauma survivors.

Stressful Life Events

Age Unfortunately, few empirical findings are available about the influence of age in the face of aversive situations (Bonanno et al., 2010). According to theories of successful development, resources available for coping with stressful situations diminish with age. Since resources are the key to successful coping with life events, elderly people are presumably worse off than younger ones. Is that really the case? Cwikel and Rozovski (1998) investigated the immigration process of people from the former Soviet Union to Israel. The immigrants came from republics adjacent to the Chernobyl power plant. The authors found that the “late-in-life” immigrants (Torres, 1995), those age 65 years and older, were disadvantaged in terms of adaptation and integration. Moreover, the recovery process after the event was slower among immigrants age 55 and older than in the younger group. In a study on Chernobyl victims, younger adults displayed greater fears of health risks than older individuals (Muthny, Gramus, Dutton, & Stegie, 1987). In the same context, H¨uppe and Janke (1994) found women and younger people (18 to 39 years old) to be more concerned than men and older individuals (40 to 59). On the contrary, investigations in the aftermath of natural disasters often reveal stronger concerns by elderly victims. In terms of depression, Toukmanian, Jadaa, and Lawless (2000) found older (31 to 55 years old) individuals exposed to an earthquake scoring higher on depression scales than younger people (17 to 30). Also, the common gender effect of women being more depressed than men could be replicated. Ben-Zur and Zeidner (1991) investigated psychological distress and health complaints under the threat of missile attacks during the Gulf War. Here, younger adults reported more anxiety, bodily symptoms, anxiety, fear, and depression than older adults. This finding is consistent with other results, as Milgram (1994) reports in a summary about Gulf War–related studies. Explanations of these age differences refer to the greater experience that older Israeli citizens have with war-related stressors. Moreover, older individuals’ coping efforts have been proven effective in other situations. The burden perspective on postdisaster psychological reactions assumes that among survivors, those who are more involved in natural disasters and removing the social and economic consequences may experience more negative consequences (Cherry et al., 2010). In line with this hypothesis, middle-aged adults are expected to suffer most. Indeed, among survivors of Hurricanes Katrina

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and Rita, middle-aged adults (45–64) showed working memory impairment, whereas oldest adults (those above 90 years old) did not experience any effect of the exposure in terms of working memory impairment (Cherry et al., 2010). The relationship between age and posttraumatic adaptation may vary across cultures. Comparisons between adult survivors of natural disasters from the United States, Mexico, and Poland showed different trajectories of PTSD across age groups. Among U.S. survivors, the relationship was curvilinear, such that middle-aged survivors were most distressed. Among Mexicans, the relationship was negative (PTSD was declining with age of respondents). Among Poles, the associations were positive, with older participants reporting the highest distress (Norris, Kaniasty, Conrad, Inman, & Murphy, 2002). Effects of age may represent differences in terms of social, economic, and cultural situation of age groups across societies. The diversity of research findings does not allow for a final conclusion. However, the vast majority of studies have detected resources as the primary determinants of successful coping with an event, which in turn buffers the detrimental effects for the mental and physical health of the victims.

FUTURE DIRECTIONS Stressful life events constitute an important research paradigm for health psychology. They are commonly seen as independent variables, called stressors, that lead to a number of predominantly negative outcomes. From a stress theory perspective, however, this bivariate relationship is too simplistic. Stress is a process that takes place in context, and the amount of stress actually perceived is different from the objective magnitude of a stressor. Characteristics of the taxing event, such as intensity, duration, predictability, and controllability, have some bearing on the way individuals cognitively appraise the event, along with other determinants, such as personality, social networks, and coping resources or vulnerabilities (Schwarzer & Knoll, 2010). Research on stressful life events too often adheres to a stimulus-based view of stress, neglecting transactional processes. This shortcoming is also reflected by the measurement of stress. One common research prototype in health psychology rests mainly on checklists or interview schedules on life events that require the respondents to review all demanding and disastrous situations in the past and to supply subjective ratings of incidence and severity. These

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ratings of cumulative life stress can lead to an ambiguous sum score that may obscure various exposure conditions and mask more information than it reveals. Moreover, the rating procedure confounds the current psychological state with an accurate recollection of past events. If the research question deals with mental health effects of prior stress exposure, one can hardly arrive at meaningful conclusions by asking respondents about the severity and impact of their life events. A different common research prototype lies, for example, in sampling survivors, observers, or rescue workers of a disaster. In this situation, the stressful life event is given by definition. To yield an index of severity, predictability, controllability, or other characteristics of the event, one can ask independent judges to rate the event along a number of dimensions. This provides useful stimulus information that should be supplemented by data on victims’ cognitive appraisals. Stressful life events can shape individual biographies and affect mental and physical health to a large extent, including premature death as a result of suicide or severe disease. Numerous studies have documented morbidity and mortality data as a result of stress. The relationship between stressful life events and health, however, is complex, and it requires consideration of mediators and moderators. Several pathways portray the causal mechanisms. One path refers to stress-induced physiological changes, such as the wear and tear on blood vessels, immunosuppression, or endocrine and cardiovascular reactivity. This again might not be a direct relationship, but it could be mediated by negative effects that follow stressful life events. Constant rumination, worrying, loneliness, or depression generates physiological changes that produce illness in the long run. A different pathway is represented by stress-induced behaviors that impair health, such as smoking, alcohol consumption, lack of exercise, sleep deprivation, and unhealthy eating. Furthermore, someone who is already ill and needy might fail to mobilize social support, seek treatment, or adhere to medication in times of severe stress. The existence of several causal pathways in the development of poor health is intuitive, but empirical evidence is sparse. One of the reasons for this deficit lies in the difficulty of identifying synergistic effects. Moreover, one cannot discover causal links when only cross-sectional data are available. The existing state of research calls for longitudinal and prospective study designs that allow a more detailed analysis of the stress–health association, including mediators and moderators, such as personality, coping, and social support. Many clinical and community interventions have been initiated, mainly as debriefing and

crisis counseling, but they are not well evaluated. Systematic intervention studies allow treatment effects to be examined, for example, by testing coping strategies that aim to modify certain stress–health pathways. In the context of positive psychology, the focus of research is turning more in the direction of protective factors, such as optimism, resilience, posttraumatic growth, and self-efficacy, to prevent people from falling victim to postdisaster stress or to allow them to bounce back from adversity (Bonanno et al., 2010; Diener & Chan, 2011; Pressman & Cohen, 2005; Segerstrom, 2001; Steptoe et al., 2009). Most of the literature on the aftermath of disasters deals with posttraumatic stress disorder, and that is also reflected in the scope of this chapter. However, there is an emerging literature on resilience and posttraumatic growth that is receiving more attention, in particular because of the potential for prevention. Already existing large-scale prevention programs, such as the Comprehensive Soldier Fitness program (Seligman & Fowler, 2011), may constitute a model for future research. REFERENCES Adams, P., & Adams, G. (1984). Mount Saint Helen’s ashfall. American Psychologist, 39, 252–260. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Andrews, B., Brewin, C. R., Philpott, R., & Stewart, L. (2007). Delayed-onset posttraumatic stress disorder: A systematic review of the evidence. American Journal of Psychiatry, 164, 1319–1326. doi:10.1176/appi.ajp.2007.06091491 Arata, C. M., Picou, J. S., Johnson, G. D., & McNally, T. S. (2000). Coping with technological disaster: An application of the conservation of resources model to the Exxon Valdez oil spill. Journal of Traumatic Stress, 13, 23–39. Bao, A., Meynen, G., & Swaab, D. (2008). The stress system in depression and neurodegeneration: Focus on the human hypothalamus. Brain Research Review, 57, 531–553. Bar-Tal, Y., Lurie, O., & Glick, D. (1994). The effect of gender on the stress process of Israeli soldiers during the Gulf war. Anxiety, Stress, and Coping, 7, 263–276. Bartrop, R. W., Luckhurst, E., Lazarus, L., Kiloh, L. G., & Penny, R. (1977). Depressed lymphocyte function after bereavement. Lancet, 1, 834–837. Basoglu, M., Kilic, C., Salcioglu, E., & Livanou, M. (2004). Prevalence of posttraumatic stress disorder and comorbid depression in earthquake survivors in Turkey: An epidemiological study. Journal of Traumatic Stress 17, 133–141. Benight, C. C., & Bandura, A. (2004). Social cognitive theory of posttraumatic recovery: The role of perceived self-efficacy. Behaviour Research and Therapy, 42, 1129–1148. Ben-Zur, H., & Zeidner, M. (1991). Anxiety and bodily symptoms under the threat of missile attacks: The Israeli scene. Anxiety Research, 4, 79–95. Berninger, A., Webber, M., Niles, J., Gustave, J., Lee, R., Cohen, H., . . . Prezant, D. (2010). Longitudinal study of probable posttraumatic stress disorder in firefighters exposed to the World Trade

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CHAPTER 3

Coping and Social Support MELISSA S. XANTHOPOULOS AND LAUREN C. DANIEL

COPING 57 THEORIES OF COPING 57 THE ROLE OF COPING IN HEALTH BEHAVIORS AND IN THE MANAGEMENT OF HEALTH RISK 60 COPING AND HEALTH OUTCOMES 61 COPING AND PSYCHOLOGICAL ADAPTATION TO DISEASE 63 SOCIAL ASPECTS OF COPING 65 CHALLENGES, CONCLUSIONS, AND FUTURE DIRECTIONS 65 SOCIAL SUPPORT 66

SOCIAL SUPPORT AND HEALTH OUTCOMES 67 SOCIAL SUPPORT AND DISEASE RECOVERY 69 DISEASE PROGRESSION AND MORTALITY 69 SOCIAL SUPPORT AND PSYCHOLOGICAL OUTCOMES 71 MECHANISMS FOR THE EFFECT OF SOCIAL SUPPORT ON WELL-BEING 73 CONCLUSIONS AND DIRECTIONS FOR FUTURE RESEARCH 73 REFERENCES 73

COPING

(physical and psychological) continues to be empirically studied and better understood.

Understanding disease etiology and disease management, as well as health risk, behaviors, and outcomes, is influenced by how an individual adapts to stress in the context of his or her sociocultural environment. This process of adaptation, more typically referred to as coping, is how people initiate, organize, and manage (or fail to initiate, organize, and manage) their behavior, emotion, cognition, motivation, and attention under stress (Skinner & Zimmer-Gembeck, 2007). Coping is a complex, dynamic process influenced by temperament, developmental stage, personality disposition, past experience, situational characteristics such as demands, and environmental features. It also involves the individual’s appraisal of the significance of the situation (primary appraisal ) and appraisal of available resources, including social and cultural resources (secondary appraisal ) (Lazarus & Folkman, 1984). It is, therefore, not surprising that coping has been found to be related to physical and psychological health. Since the 1990s, there has been increased interest in processes of resilience, maintenance of well-being, and growth in the face of stress, contributing to the emerging area of positive psychology (Aspinwall & Tedeschi, 2010; Seligman & Csikszentmihalyi, 2000). The role of coping in disease etiology, management, risk, adaptation, and outcomes

THEORIES OF COPING The genesis of the concept of coping as a protective process grew from work originally focused on the negative impact stress can have on mental and physical health. As it became more apparent that stress can be harmful, interest extended to processes that could assuage these negative effects, such as resilience and the maintenance of wellbeing in the face of adversity. Thus, underlying theories of coping were developed. Today the scope of coping theories and their applications continue to expand. Stress and Coping Paradigm The transactional stress and coping paradigm put forth by Lazarus and Folkman in 1984 triggered the immense proliferation of research on stress and coping that continues to this day. They established the most widely accepted definition of coping. This cognitively oriented theory postulates that coping responses are a dynamic series of transactions between the individual and the environment whereby people use thoughts and behaviors to manage internal 57

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and external demands of situations that are appraised as stressful (Lazarus & Folkman, 1984). The coping process begins and ends with a series of appraisals. First, people judge an event’s significance as threatening or harmful, positive, challenging, or irrelevant. They then determine if it is controllable, and it is the perceived degree of controllability that influences the choice of coping strategies. They then evaluate the outcome of their coping efforts and their expectations for future success in coping with a stressor. The types of coping strategies employed are determined by these individual judgments. Actual coping efforts give rise to outcomes of the coping process, including psychological adaptation (or maladaptation). This transactional model proposes two main dimensions of coping: problem-focused coping, aimed at changing the problematic situation by improving the environment to reduce stress, and emotion-focused coping, aimed at managing emotional responses by changing thoughts or reactions to reduce the emotional impact of stress. Problem-focused coping efforts include such behaviors as information seeking, holding back actions, or confronting the situation, whereas emotion-focused coping efforts include such behaviors as positive reappraisal, cognitive restructuring, avoidance, distancing, selective attending, denial, acceptance, minimization, and distraction. Cognitive Processing Theory According to the cognitive processing theory, psychologically confronting a traumatic experience allows for processing of the trauma and integrating it into the person’s life, thereby decreasing its negative impact. Coping with health threats involves appraisal of disease characteristics (Leventhal, Weinman, Leventhal, & Phillips, 2008), the ability to manage the disease, and the impact of the disease on the person’s life and lifestyle (Park, 2011). Distress is caused by the contradiction between the major stressor and people’s underlying core belief systems about themselves and their world (Janoff-Bulman, 1992). Processing leads to repetitive thoughts, which are reexperiences of the stressor, until the discrepancy is resolved and the person adjusts (Creamer, Burgess, & Pattison, 1992). In health psychology, the cognitive processing theory has been studied most commonly in patients recently diagnosed with cancer (Quartana, Laubmeier, & Zakowski, 2006; Salsman, Segerstrom, Brechting, Carlson, & Andrykowski, 2009). A major stressor, such as a cancer diagnosis, can challenge deeply held thoughts about oneself and life. Patients may confront their diagnosis by actively engaging in thoughts about the diagnosis,

discussing their condition with family and friends, and talking with health-care providers about the course of their disease (Quartana et al., 2006). These controlled efforts of processing and repetitive thoughts about a newly acquired diagnosis are often associated with better psychological adjustment than uncontrolled or intrusive thoughts (Salsman et al., 2009). Controlled processing exposes patients to the reality of their diagnosis and facilitates the resolution of the discrepancy between the stressor and the belief system, leading to integration of the disease into their lives (Creamer et al., 1992). Recently, cognitive processing has commonly been associated with posttraumatic growth. Posttraumatic growth refers to positive adjustments made after recently experiencing a traumatic event. Posttraumatic growth may result from finding meaning from the stressful event. For example, the meaning-making model of coping considers two levels of meaning: (1) global meaning, which is an individual’s broad beliefs, goals, and sense of purpose; and (2) situational meaning, which is meaning regarding a specific occurrence (Park, 2011). Distress results when the appraised meaning conflicts with global beliefs and goals. For example, a person may have global beliefs, such as “I am healthy because I exercise. Exercise protects people from heart disease, and I want to live a life full of well-being, without being impeded.” If this person has a heart attack, global beliefs are threatened, which may cause distress unless the person is able to make meaning out of the event by reappraising the global meaning. Coping Style Theory While the majority of theories treat coping as a dynamic and situational variable, some theorists conceptualize coping behaviors as more dispositional and traitlike. Coping style refers to a stable pattern of coping strategies an individual uses across stressful situations, including in response to threatening health information (Carver, Scheier, & Weintraub, 1989). Coping style is believed to drive appraisal and coping efforts (Lazarus & Folkman, 1984). The impact of stress on coping processes and outcomes differs by individual coping style, but coping style may also directly affect emotional and psychological outcomes. Several coping styles have been explored as they relate to health, particularly monitoring, repressive, and optimistic coping styles. Monitoring process theory proposes that health threats are dealt with in terms of the attentional processes of monitoring and blunting (S. M. Miller, 1987). Monitoring involves seeking information, while blunting involves avoiding threat-relevant information or engaging in cognitive distraction. Medical

Coping and Social Support

diagnoses are often accompanied by feelings of uncertainty; therefore, information seeking (e.g., monitoring) is common. Information seeking can increase distress, particularly if the individual becomes hypervigilant, and can contribute to heightened perceived risk, worry, and distress about health threats (Lerman et al., 1996; Schwartz, Lerman, Miller, Daly, & Masny, 1995). Alternatively, it can lead to reduced stress and adaptive health behaviors in controllable situations by increasing arousal while minimizing possible danger, as well as through controlled processing as described previously. People who typically blunt often distract from and downgrade threatening information. This reaction, too, can be either adaptive or maladaptive. For example, in controllable situations, blunting is ineffective because it can increase the likelihood that important danger cues are ignored. Conversely, if the situation is uncontrollable, an individual can effectively reduce stress by engaging in blunting techniques such as distraction or reevaluation of the event. Similar to the monitoring process theory, a personalitybased approach to coping stemming from an approach– avoidance motivational perspective has been identified (Carver & Connor-Smith, 2010). There are three basic properties of self-regulation that manifest in behavior: (1) the tendency to approach desirable objects and situations, (2) the tendency to avoid dangerous objects and situations, and (3) the capacity to regulate approach and avoidance tendencies (Carver & Connor-Smith, 2010). Approach-oriented or active coping strategies include information seeking, problem solving, seeking social support, benefit finding, and creating outlets of emotional expression. Avoidance-oriented or passive coping involves strategies such as denial, suppression, repression, and disengagement. These constructs are presented in later sections as they relate to health and disease management and outcomes. The constructs of repressive coping style and emotional control have received considerable attention in the health psychology literature. Individuals who exhibit a repressive coping style report low levels of distress when exposed to potentially stressful situations but have high physiological reactivity (Weinberger, Schwartz, & Davidson, 1979). It is inferred that these individuals are consciously repressing threatening feelings and thoughts. This style has also been labeled as attention-rejection (Mullen & Suls, 1982) and repression-sensitization (Byrne, 1961). A construct similar to repression is emotional control, which is when an individual experiences and labels emotions but does not express emotional reactions. The role of emotional repression and suppression has been studied most often

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in relation to cancer onset and progression, particularly breast cancer (J. E. Brown, Butow, Culjak, Coates, & Dunn, 2000; Petticrew, Bell, & Hunter, 2002). Numerous studies have linked repressive coping style and adverse health outcomes (Cooke, Myers, & Derakshan, 2003; Denollet, Martens, Nyklicek, Conraads, & de Gelder, 2008). Dispositional optimism is the propensity, over time and across situations, to have positive rather than negative generalized expectancies for outcomes (Scheier & Carver, 1992). While the benefits of optimism on psychological adjustment and quality of life are well demonstrated across a variety of illnesses (Aspinwall & Tedeschi, 2010), the association between optimism and disease outcome has been mixed (Coyne & Tennen, 2010; Giltay, Geleijnse, Zitman, Hoekstra, & Schouten, 2004; Schofield et al., 2004). It appears that optimism may have protective effects on physical and emotional outcomes by augmenting the use of approach-oriented coping strategies and social support, as well as by reducing disease-related threat appraisals and avoidant coping (Aspinwall, 2005; Carver et al., 1993). An optimistic coping style is also an important consideration in the growing field of positive psychology, which examines how people develop and sustain characteristics such as hope, wisdom, future mindedness, courage, spirituality, and perseverance in the face of chronic illness (Seligman & Csikszentmihalyi, 2000). Theories of Coping With Health Behavior and Health Risk Behavioral enactment models (BEM) have been developed to bridge the gap between intentions and behavior and include self-regulatory conceptualizations of health behaviors (Sniehotta, Scholz, & Schwarzer, 2005) and illness behavior (Prohaska, Leventhal, Leventhal, & Keller, 1985). In the context of health behavior, planning is a prospective regulatory process that links goal setting with goal pursuit and involves two constructs: action planning and coping planning. Action planning is a postintentional process that links goal-directed responses to situational cues, such as when, where, and how to act (Leventhal, Singer, & Jones, 1965). Coping planning is a barrierfocused self-regulation strategy in which cognitions of anticipated risk situations are linked to appropriate coping responses. Higher levels of coping planning have been found to improve exercise levels in cardiac patients after discharge (Sniehotta et al., 2005). Similar to action and coping planning, proactive coping is a process whereby people anticipate potential stressors and act in advance

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to prevent them or assuage their impact. It consists of five stages: (1) resource accumulation, (2) recognition of potential stressors, (3) initial appraisal, (4) preliminary coping efforts, and (5) elicitation and use of feedback concerning initial efforts (Aspinwall, 2005). Proactive coping has been found to be a better predictor of long-term selfmanagement of type 2 diabetes than intentions or selfefficacy (Thoolen, de Ridder, Bensing, Gorter, & Rutten, 2009). In the context of illness behavior, symptoms are key factors in how health threats are perceived and are also the main targets for coping. Symptom reduction is necessary for appraising progress and justifying health threats (Cameron, Leventhal, & Leventhal, 1993). First, the individual perceives a change in somatic activity or a symptom, such as pain. Next, this symptom is compared with the person’s memory of prior symptoms in an attempt to evaluate the nature of the health threat. The person forms a symptom or illness representation, which includes several key components: (a) identity of the health problem, including its label and attributes such as severity; (b) duration, an evaluation of how long it will last; (c) consequences, such as how much it will disrupt daily activity and anticipated longterm consequences or severity of the threat; (d) causes of the symptom; and (e) expectation about controllability of the symptom (Lau, Bernard, & Hartman, 1989). The individual decides how to cope with the symptom once he or she completes this evaluation. Self-regulatory models conceptualize care-seeking and self-care behaviors, such as adherence, as coping behaviors and incorporate how people cope with emotional responses to health threats. Thus, these models include the study of determinants of adherence under the rubric of coping literature. Developmental Perspective of Coping A developmental conceptualization of coping is essential in considering chronic conditions. Developmental level shapes how individuals detect and respond to stress, such as a medical threat. For example, the type of coping strategies used in response to health complications depends on such characteristics as the age of the person, age of onset of symptoms, and life expectancy. Throughout childhood, coping follows a fairly constant developmental progression but is not as clearly defined in adulthood. Since the focus of this chapter is on adult coping and health, the reader is referred elsewhere for reviews of child and adolescent coping (Compas, 1987; Compas, Connor-Smith, Saltzman, Thomsen, & Wadsworth, 2001) and a detailed discussion of the developmental conceptualization of coping across the life span (Aldwin, 2011).

Hierarchical Models Individuals respond to stress in an infinite number of ways, and researchers have attempted to organize these patterns into hierarchies. Several higher-order hierarchical system models have been proposed that include two to five dimensions. For a detailed review of these models, the reader is referred to Duhachek and Oakley (2007). Broadly, higherorder constructs or processes consist of strategies such as problem-focused, emotion-focused, approach, avoidance, voluntary, involuntary, appraisal-focused, primary control, secondary control, relinquished control, autonomy, competence, distraction, and support (Duhachek & Oakley, 2007). Higher-order processes can then be further differentiated into lower-level coping processes or behaviors, such as rumination, denial, acceptance, and cognitive restructuring, to name a few (Duhachek & Oakley, 2007). Several theoretical models of coping have been proposed in the context of health, many of which have similar underlying principles and treat coping as a situational variable. A subset of researchers conceptualize it as a traitlike construct. These factors have led to inconsistencies in findings in the empirical literature, as later reviewed.

THE ROLE OF COPING IN HEALTH BEHAVIORS AND IN THE MANAGEMENT OF HEALTH RISK Health behaviors include actions such as seeking care, communicating, adherence to treatment recommendations, and lifestyle habits (e.g., exercise, substance use, and dietary habits). The acknowledgment that one is at higher risk for disease because of family history and/or behavioral risk factors contributes to the process of coping with health risk. Most chronic illnesses require medical decision-making and self-management skills, such as going to medical appointments, following lifestyle recommendations, and taking medication. Several examples from the empirical literature here elucidate the role of coping in health behaviors and risk. However, we only briefly review the role of coping in health behaviors and in the management of health risk, as the study of medical decision making and determinants of adherence to medical regimens is a literature unto itself and beyond the scope of this chapter. Taking medication and following lifestyle advice are two of the most common behaviors required of individuals with chronic illness. Nonetheless, nonadherence to medical regimens and lifestyle changes is common, with rates ranging from 30% to 60% (Dunbar-Jacob et al., 2000).

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Nonadherence may manifest as a result of inadequate coping behaviors (Dunbar-Jacob et al., 2000). For example, avoidant coping, such as denial, is related to delay in seeking medical care for acute coronary syndromes (PerkinsPorras, Whitehead, Strike, & Steptoe, 2008). Repressive coping has been associated with lower ability to perceive symptoms (Lehrer, 1998) and may also contribute to a delay in seeking medical treatment. Further, women who engaged in a repressive coping style conducted less frequent and less proficient breast self-exams and reported more barriers and fewer benefits of the breast self-exam (Barron, Houfek, & Foxall, 1997). Conversely, adaptive coping strategies, such as approach coping and acceptance, have been found to be associated with increased adherence. For example, an active coping style has been shown to positively influence dietary behaviors in African Americans with type 2 diabetes (Samuel-Hodge, Watkins, Rowell, & Hooten, 2008). Further, engaging in self-monitoring, a behavior associated with active coping, is associated with long-term success in weight management (Wadden et al., 2005) and smoking cessation (Kamarck & Lichtenstein, 1988). Research on the role of coping in health behaviors and risk has been conducted in populations with a variety of chronic conditions. In a meta-analysis of coping in people with HIV, subscales from the Ways of Coping (Folkman & Lazarus, 1988) and the COPE (Carver et al., 1989) were used, as well as dichotomous classification relying on the approach–avoidance distinction (Moskowitz, Hult, Bussolari, & Acree, 2009). Health behaviors from the 63 studies included in this meta-analysis were positive lifestyle changes, missed medical appointments, times in detoxification programs, frequency of T-cell count, participation in AIDS groups, increased exercise, improved diet, decreased smoking, decreased drug use, medication adherence, health promotion behaviors, substance abuse, and sexual risk. Direct action and self-blame were associated with better health behaviors, while alcohol and/or drug disengagement, behavioral disengagement, and distancing were associated with poorer health behaviors. Approach coping was also significantly associated with better health behaviors. Overall, it appears that active coping strategies may improve health behaviors and health risk.

COPING AND HEALTH OUTCOMES There is consensus that biological factors are not the only variables that account for health outcomes. This agreement has led to the propagation of research in the area

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of psychoneuroimmunology (Stowell, Robles, & Kane, this volume). Despite an abundance of research, findings related to coping and health outcomes are inconsistent. First, we examine the association between coping and disease risk, and then we investigate the literature on the association between coping and disease progression. Disease Risk The notion that psychological factors, particularly certain personality characteristics, contribute to the development of disease, such as cardiovascular disease (CVD) and cancer, has existed for decades (Friedman & Rosenman, 1959; Greer, Morris, & Pettingale, 1979). The development of cancer, CVD, and many other chronic illnesses is a multifactorial phenomenon involving the interaction of genetic, immunological, and environmental variables. Coping has been associated with the (dys)functioning of various biological systems. For example, repressive coping has been associated with high systolic blood pressure and reduced immunocompetence (Jamner & Leigh, 1999). An avoidant coping style has been significantly negatively correlated with monocyte, lymphocyte, and T-lymphocyte concentrations, whereas approach strategies were not found to be associated (Ozura & Ihan, 2010). Further, active coping, such as problem engagement and solicitation of social support, has been associated with reduced cortisol output (O’Donnell, Badrick, Kumari, & Steptoe, 2008). In a study of 97 older women without diabetes, psychosocial factors were evaluated as predictors of levels of glycosylated hemoglobin (HbA1c ) over 2 years (Tsenkova, Dienberg Love, Singer, & Ryff, 2008). Results revealed, after controlling for baseline HbA1c and sociodemographic and health factors, higher levels of problem-focused coping (active, instrumental social support, suppressing competing activities), venting, and positive affect predicted lower levels of HbA1c . However, none of the emotion-focused coping measures showed negative effects on glycemic control, which has been documented in individuals with diabetes. Further, the finding that venting was a significant predictor of positive outcome is surprising, as it has generally been related to negative health outcomes in studies of those with chronic conditions (Burker, Evon, Marroquin Loiselle, Finkel, & Mill, 2005). In addition, an interaction showed that the adverse effects of low problem-focused coping in HbA1c across time were augmented among those who also had low levels of positive affect. These findings highlight a particular vulnerability in individuals with low positive affect who also lack problem-focused coping skills.

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The most investigated topics in the area of disease risk are the associations between coping and risk for coronary heart disease (CHD) and cancer. In a 10-year longitudinal study of 1,306 men, 162 cases of incident CHD occurred, including 71 cases of nonfatal myocardial infarction (MI), 31 cases of fatal MI, and 60 cases of angina pectoris. Results revealed that having an optimistic, compared to a pessimistic explanatory style lowered the risk of CHD, independent of health behaviors (Kubzansky, Sparrow, Vokonas, & Kawachi, 2001). Giltay, Kamphuis, Kalmijn, Zitman, and Kromhout (2006) conducted a cohort study with a follow-up of 15 years, including 545 men age 64 to 84 years who were free of preexisting CVD and cancer. They found that dispositional optimism showed a graded and inverse association with cardiovascular death. In addition, other studies have found an independent and protective association between dispositional optimism and all-cause and CVD mortality (Giltay et al., 2004; Maruta, Colligan, Malinchoc, & Offord, 2000). Since the publication of Avery Weisman’s On Dying and Denying (1972), the construct of denial has been studied extensively in psycho-oncology. Comparable constructs, such as avoidance, distancing, minimizing, suppression, repression, and defensiveness, signify a lack of consensus in theoretical and operational definitions and provide a potential reason for mixed findings in the literature (Moyer & Levine, 1998). In a review of coping on survival and recurrence in people with cancer, no significant associations were found between coping styles (e.g., fighting spirit, helplessness/hopelessness) and survival or recurrence (Petticrew et al., 2002). Coping and outcomes of in vitro fertilization (IVF) have also been studied. In a study examining the association between coping (active, palliative, avoidance, support seeking, depressive coping, expression of negative emotions, and comforting ideas) and conception from IVF, women who had higher than median scores on a palliative coping measure had a significantly greater chance of conceiving than women who had a lower than median score on this measure (Demyttenaere et al., 1998). Further, emotionally expressive coping was a risk factor for reduced rates of conception in women undergoing IVF (Panagopoulou, Vedhara, Gaintarzti, & Tarlatzis, 2006), whereas the emotion-focused strategy of letting go (behavioral disengagement) was significantly prospectively associated with pregnancy (Rapoport-Hubschman, Gidron, Reicher-Atir, Sapir, & Fisch, 2009). These results suggest that in the context of a low-control situation (i.e., IVF), acceptance and disengagement may be beneficial.

Disease Progression Reactions to stress may affect health status and disease progression via the physiological processes of the endocrine, immune, and nervous systems (Glaser & Kiecolt-Glaser, 2005). For example, an association between loss of daily variation in cortisol and shorter survival time from breast cancer has been reported (Sephton, Sapolsky, Kraemer, & Spiegel, 2000). Studies examining coping with cancer progression have resulted in contradictory findings. Early studies reported an association between coping style and outcome in early-stage breast cancer, but these studies did not control for known prognostic indicators (Buddeberg et al., 1996; Watson & Greer, 1983). In a 15-year study of patients with nonmetastatic breast cancer, those who responded to the health threat with a fighting spirit or with denial had less recurrence and longer lives than patients with stoic acceptance (fatalism) or helpless responses (Greer, 1991). Several studies have found a positive association between denial and physical functioning, indicating that denial may lead to experiencing fewer physical complaints (J. E. Brown et al., 2000). However, Manne and colleagues (1994) found no relation between denial of impact and physical symptoms but did find that denial of affect combined with behavioral escape was related to having more physical symptoms in breast cancer patients undergoing chemotherapy. Further, among patients with early-stage cancer, increases in avoidance were associated with deterioration in physical condition, whereas in patients with later stages of disease, this relationship was not found (Manne, Glassman, & Du Hamel, 2001). Coping and disease progression has also been studied in other populations. Avoidant coping, including behavioral disengagement, has been found to be related to mortality in patients with end-stage renal disease (ESRD) and congestive heart failure (Murberg & Bru, 2001; Wolf & Mori, 2009). In fact, a unit change in avoidant coping was associated with 114% increase in odds of mortality in veterans with ESRD (Wolf & Mori, 2009). Passive coping strategies directed toward disengagement and avoidance also have been found to predict increased functional disability and pain in individuals with rheumatoid arthritis at 3- and 5-year follow-up (Evers, Kraaimaat, Geene, Jacobs, & Bijlsma, 2003). One of the most studied areas of psychosocial factors in disease outcomes is the link between coping and HIV outcomes. In a meta-analysis of coping with HIV (Moskowitz et al., 2009), physical health outcomes included mortality, disease severity and somatic symptoms, viral load, physical health, CD4 count, survival time, and cortisol.

Coping and Social Support

Direct action and positive reappraisal, as well as approach coping, were significantly associated with better physical health. Behavioral disengagement, distancing, and venting, as well as avoidance coping, were associated with poorer physical health. Similar to disease risk, overall, passive, avoidant strategies have been linked to poor health outcomes, whereas active, approach-oriented strategies have been linked to better health outcomes, though findings are inconclusive. COPING AND PSYCHOLOGICAL ADAPTATION TO DISEASE Coping and adaptation to disease have been examined using cross-sectional and longitudinal designs. The methods are equally important, providing unique contributions to the understanding of the impact coping has on disease experience, progression, and psychological and physical outcomes. Cross-Sectional Studies of Coping With Chronic Illness Based on the stress and coping paradigm, early studies of coping and chronic illness divided coping strategies into the general categories of problem- and emotion-focused. These early studies of coping were cross-sectional in nature and used retrospective checklists, such as the Ways of Coping Checklist (WOC). They focused mostly on psychological outcomes rather than pain and functional status. In subsequent years, specific types of coping have been investigated as they relate to psychological outcomes. In the past decade, the focus has shifted from studying coping as it relates to negative consequences of chronic disease to also examining positive affect and perceived personal growth in the context of chronic disease. Styles of emotion regulation characterized by avoidance, denial, disengagement, venting, or nonexpression have been shown to result in maladjustment to chronic illness and psychological distress in cross-sectional studies (de Ridder, Geenen, Kuijer, & van Middendorp, 2008; Manne et al., 1994). However, other studies have found that venting or denial of affect is related to less distress (Tsenkova et al., 2008). Poorer psychological functioning seems related to passive escape strategies, while more active distractive strategies to create a positive outlook are associated with a reduction in distress in patients with cancer (Vos & de Haes, 2007). Further, active coping styles and acceptance have been associated with more positive affect and emotional well-being (Manne et al., 1994;

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Pakenham & Rinaldis, 2001). For example, in a study evaluating the association between coping and depression and anxiety symptoms in women with all stages of breast cancer, coping mediated the relation between optimism and distress (Epping-Jordan et al., 1999). Optimism predicted less emotion-focused disengagement, which, in turn, predicted fewer negative affective symptoms. In a meta-analysis of coping in people with chronic illness or undergoing a medical procedure, coping was classified in three ways: (1) approach and avoidance; (2) cognitive approach, cognitive avoidance, behavioral approach, and behavioral avoidance; and (3) problemfocused and emotion-focused (Roesch & Weiner, 2001). Results showed that better psychological adjustment was associated with approach, cognitive approach, behavioral approach, problem-focused, and emotion-focused forms of coping. Avoidance and cognitive avoidance were associated with poorer psychological outcomes. In two subsequent meta-analyses, investigators used an approach– avoidance and a problem-focused–emotion-focused classification. In a meta-analysis of studies of men with prostate cancer, approach coping and avoidance coping were significantly associated with better and poorer overall adjustment, respectively (Roesch et al., 2005). Similarly, among people with diabetes, approach coping was associated with better overall adjustment, less anxiety, less depression, and better glycemic control; however, avoidance coping was not related to any of the four outcomes (Duangdao & Roesch, 2008). Additionally, in a meta-analysis of psychological correlates in patients with multiple sclerosis (MS), the use of certain emotion-focused strategies (e.g., wishful thinking and escape-avoidance) was consistently and strongly related to negative adjustment outcomes, while problem-focused coping, seeking social support, and more adaptive emotion-focused strategies (e.g., positive reappraisal) tended to be related to better adjustment (Dennison, Moss-Morris, & Chalder, 2009). On the basis of these meta-analyses, approach coping was associated with better outcomes. Avoidance coping was less consistently related to outcome, but when there was a significant effect, it tended to be associated with poorer outcomes. In studies of coping with HIV, psychological outcomes have been a frequent focus, including both negative affective (e.g., depression and anxiety) and positive affective outcomes (e.g., life satisfaction, hope, quality of life, and positive mood). In a meta-analysis of coping with HIV, direct action, positive reappraisal, and spirituality were associated with higher levels of positive affect, while alcohol and/or drug disengagement, behavioral disengagement,

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escape or avoidance, and social isolation were associated with lower positive affect (Moskowitz et al., 2009). The effect size for most of these outcomes was small to medium; however, the effect for social isolation was large. Acceptance, direct action, fighting spirit, planning, positive reappraisal, and seeking social support were significantly associated with lower negative affect, while self-blame, alcohol and/or drug disengagement, behavioral disengagement, confrontation, distancing, escape or avoidance, hopelessness, rumination, self-controlling, social isolation, and venting were associated with higher negative affect. Again, effect sizes for most variables were small to medium, with the exception of social isolation and hopelessness, which were large. The study of coping and psychological outcomes in advanced stages of disease, including cancer and ESRD has begun to expand. Kershaw, Northouse, Kritpracha, Schafenacker, and Mood (2004) found avoidant coping strategies to be associated with poorer psychological adaptation and decreased quality of life in advanced-stage breast cancer, while active coping was associated with higher quality of life. Active coping also has been found to have beneficial effects on mental health in ESRD (Christensen, Ehlers, Raichle, Bertolatus, & Lawton, 2000). Different aspects of disease or tasks related to illness, such as time since diagnosis, physical impairment, or complexity of the treatment regimen, may elicit different coping strategies that reduce or increase distress across chronic conditions and may explain some of the mixed results in the literature. For example, Mohr, Goodkin, Gatto, and Van der Wende (1997) found problem solving to be related to lower levels of psychological distress in patients with high levels of physical impairment from MS, but unrelated to distress in patients with less impairment. Additionally, patients with severe asthma had more psychological distress and difficulty in coping with their disease, both emotionally and behaviorally, relative to patients with moderate asthma (Lavoie et al., 2010). Minimization of threat, an avoidant coping strategy, may be useful at acute moments of crisis, but research indicates that avoidance typically results in maladjustment over time (Roesch et al., 2005). Moreover, later stages of cancer have been found to be associated with higher prevalence of denial (Vos & de Haes, 2007), and intrusive thoughts were found to be related to higher avoidance and had an indirect effect on psychological distress in patients with later stages of disease (Manne et al., 2001). Studies indicate that individual differences influence whether a person is harmed or helped by a particular coping strategy. For example, avoidant coping may be

a mechanism for a cancer patient’s distress in the context of unsupportive behaviors by a partner (Manne, Ostroff, Winkel, Grana, & Fox, 2005) because the combination of high avoidance-oriented coping plus low social support has been identified as a risk factor for distress in individuals with chronic illness (Devine, Parker, Fouladi, & Cohen, 2003). It also has been reported that individuals high in sensitivity to threat may either benefit from disengagement or be harmed by engagement in the short term, with the opposite pattern presenting for individuals low in sensitivity to threat (Connor-Smith & Compas, 2004). In studies of patients with ESRD, it was found that adherence was best when the patient’s preferred style of coping with illness-related stress was consistent with the contextual features or demands of the particular type of medical intervention (Christensen, Smith, Turner, & Cundick, 1994). For example, this study compared individuals on dialysis treated at outpatient staff-run centers versus self-treated on home dialysis. Patients with highly active or vigilant coping styles adhered better when the patient was doing home dialysis, and patients with less active and more avoidant coping adhered better when they were going to a staff-administered outpatient setting. Adherence was maximized when the patient’s preferred style matched the requirements or demands of the type of dialysis treatment received. Longitudinal Studies There has been a significant increase in longitudinal studies on adjustment to chronic disease over the last 20 years. Several examples highlight findings across chronic illnesses. Passive strategies directed toward disengagement have been found to predict poor adjustment over time in individuals with rheumatoid arthritis (RA) (Covic, Adamson, Spencer, & Howe, 2003; Felton, Revenson, & Hinrichsen, 1984), whereas active cognitive coping and problem-focused coping are associated with indicators of positive adjustment and reduced distress to RA (Treharne, Lyons, Booth, & Kitas, 2007; Young, 1992). In a longitudinal study examining psychosocial functioning in patients with MS, acceptance was related to better adaptation at 7-year follow-up (Brooks & Matson, 1982). Perceived positive meaning resulting from the breast cancer experience at 1 to 5 years after diagnosis predicted an increase in positive affect 5 years later (Bower et al., 2005). Finding benefit in the year after breast cancer surgery predicted lower distress and depressive symptoms 4 to 7 years later (Carver & Antoni, 2004). In contrast, one study found that coping responses characterized by cognitive avoidance

Coping and Social Support

and minimal use of approach-based coping strategies following breast cancer diagnosis predicted significantly worse psychological adjustment 3 years later (Hack & Degner, 2004). In a study of coping across time among first-time MI patients (Stanton, Revenson, & Tennen, 2007), concurrent analyses showed that acceptance coping was associated with lower anxiety and better positive affect at baseline, and avoidant-focused coping was associated with elevated anxiety at baseline and negative affect at 2 months postMI. Further, social and emotional coping was concurrently associated with low positive affect and elevated anxiety at 2 and 6 months post-MI, and elevated negative affect at baseline, 2 and 6 months post-MI. Problem-focused coping was concurrently associated with better positive affect at 6 months and was the only coping strategy to be predictive of reduced health complaints (somatic and cognitive) at 2 and 6 months post-MI. In general, active, approachoriented coping efforts to manage disease-related challenges often facilitate adjustment, while determined attempts to avoid disease-related thoughts and feelings are predictors of increased distress.

SOCIAL ASPECTS OF COPING While traditional models emphasize individual approaches to coping, there is increasing recognition of the importance of social aspects of coping. Adjustment to illness also needs to be examined as an interpersonal experience. For example, dyadic coping is more than providing social support; it also involves emotional negotiating and collaborative coping in the face of a shared stressor, such as being diagnosed with a medical condition or chronic illness (Badr, Carmack, Kashy, Cristofanilli, & Revenson, 2010). Recent literature has investigated the interaction between individual coping strategies and relationships, noting that strategies that benefit the individual may not always benefit the relationship partner and vice versa (Folkman & Moskowitz, 2004). Relationshipfocused coping takes into account efforts to balance managing one’s own distress against addressing partner needs with the goal of maintaining the health of the relationship during stressful events taking priority over either individual’s needs (Revenson & DeLongis, 2011). One model that stresses both individual and communal perspectives includes a prosocial-antisocial dimension, as well as a passive-active dimension (Wells, Hobfoll, & Lavin, 1997). Prosocial communal coping is characterized by support for the individual, as well as the individual’s consideration of

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others, while antisocial coping is marked by an unsupportive social environment and an isolated (“I can handle this on my own”) coping approach. An individual’s decision to engage in passive versus active coping strategies relates to beliefs about the impact on others. In other words, an individual may engage in passive coping if a more active approach is perceived as distressing to someone in his or her social network. Social Comparison Social comparison is an individual’s need to compare oneself to others as a means of obtaining relevant information for self-evaluation. Broadly speaking, social comparison is a cognitive process that can be upward or downward; that is, individuals may compare themselves with those who are better or worse off (A. P. Buunk & Gibbons, 2007). Downward comparison may be particularly relevant for patients coping with disease, and it appears highly prevalent among individuals with serious medical conditions (Tennen, McKee, & Affleck, 2000). Research has shown that downward comparison can reduce negative affect, facilitate positive health behavior change, and improve well-being (B. P. Buunk, Ybema, Gibbons, & Ipenburg, 2001). For example, a person experiencing a loss may see an improvement in mood by learning about others who are worse off (Wills, 1981). In a study of the association between both upward and downward social comparison and mood among women with breast cancer, investigators found that women experienced both positive and negative changes in affect in response to comparisons with other breast cancer patients of varying disease prognosis and psychological adjustment (Stanton et al., 2000). CHALLENGES, CONCLUSIONS, AND FUTURE DIRECTIONS In the past, the general literature on coping has received a great deal of criticism from researchers because of the gap between the complicated, process-oriented stress and coping and the simplistic, retrospective methodologies used to evaluate theory. Problems in the basic ontology of coping, conceptualization, measurement, defining and applying theoretical and dimensional models, and methodologies have created heated debate in the coping literature related to chronic illness (Folkman & Moskowitz, 2004). These factors are likely to contribute to inconsistent results. Further, in recent years, coping as it relates to health has expanded to public health concerns ranging from emergency preparedness to the increasingly growing burden of

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chronic diseases. People in industrialized nations are living longer, dramatically increasing the probability of living with a chronic illness or disability. In addition, disorders that were once uncommon in childhood, such as type 2 diabetes mellitus, asthma, allergies, and autism, are becoming more prevalent. With the increasing number of individuals and increased length of time living with chronic conditions, as well as disorders presenting at earlier ages, the number of individuals involved in caretaking has also grown. These epidemiological changes have recently significantly influenced the course of coping research. These challenges and changes, however, have also contributed to progress in the field as a whole. Both theory and empirical evidence indicate that (a) maintaining health and living with chronic disease requires adaptation in multiple life domains, (b) adaptation is a changing but not always a fluid process that is influenced by individual dispositional characteristics, and (c) both positive and negative indicators of coping affect psychological, physiological, and behavioral outcomes. Although findings are inconsistent, overall approach, active, and optimistic coping strategies tend to be related to improved health behaviors, reduced risk, and better outcomes, whereas avoidant, passive strategies tend to be related to poorer health behaviors, increased risk, and poorer outcomes. There has been a growth in the study of positive and adaptational outcomes in the face of chronic disease, such as posttraumatic growth, meaning finding, and benefit finding. Further, coping is also being examined as an interpersonal and context-specific experience. Research in coping, stress, and health continues to mature. Researchers are using more longitudinal and prospective designs and are increasingly implementing real-time measures to examine multiple phases of the disease trajectory, such as the time of diagnosis, during treatments, during periods of quiescence and recurrence, and end stage. Further, more sophisticated research designs (e.g., multifactorial longitudinal research designs) and statistical procedures are being developed and refined (e.g., growth modeling, structural equation modeling), allowing examination of complex relationships among sets of variables and outcomes. In addition, efforts are focused on identifying causal pathways between coping, health, and chronic illness. These advances continue to contribute to the evolution of the field. SOCIAL SUPPORT The relationship between social support and health outcomes is one of the most studied topics in health

psychology. Social relationships and interactions have been suggested to affect health, psychological well-being, mortality, and quality of life by scientists across behavioral and medical disciplines. The significant amount of research on social support in health psychology makes an exhaustive review beyond the scope of this chapter; however, comprehensive reviews examining the role of social support in specific conditions such as coronary heart disease (Lett et al., 2005) and cancer (Nausheen, Gidron, Peveler, & Moss-Morris, 2009) are available in other sources. This chapter reviews definitions and conceptualizations of social support, as well as the empirical research describing the relationship between social support and health outcomes. Categorizations of Social Support The measurement of social support has varied widely, based on underlying theory regarding the type and function of social support. More recently, the literature describes two main categories of social support: structural and functional support (Barth, Schneider, & von Kanel, 2010; Lett et al., 2005). Structural support characterizes the support network by quantifying the relationships using factors such as number of contacts, membership in community groups, proximity to contacts, and marital status. Structural support is considered to be a relatively constant construct that describes an individual’s level of social integration within a social network (Cohen & Wills, 1985). Alternatively, functional support describes helping behaviors provided by the individual’s social structure. Measures of functional support are only weakly related to structural support, as having a large social network does not necessarily guarantee that an individual receives the needed support from this network. Within functional support, emotional support (e.g., listening and providing comfort), instrumental support (e.g., driving a friend to the doctor’s office), and informational support (e.g., giving a patient information about the diagnosis and services available) have all been used to conceptualize the resources that are provided by interpersonal relationships (Cobb, 1976; Helgeson, 2003). Perceived support is the total number of relationships and supports the individual can access and the individual’s perceptions of these supports. Cohen and McKay (1984) proposed that perceived support protects the individual by changing the interpretation of threat caused by a stressor. Received support, however, denotes actual supportive behaviors. Researchers believe that the mechanism by which received support operates is through the promotion of active coping (Baron, Cutrona, Hicklin, Russell, &

Coping and Social Support

Lubaroff, 1990). Although there is some debate about the effects of perceived versus received support, research indicates that perceived support is more strongly associated with health outcomes (Barrera, 1986). There are additional distinctions that classify the nature and content of received support to better describe its effects and how it is interpreted. Negative support is any type of support the recipient perceives as unsupportive, regardless of the intention (Revenson, Schiaffino, Majerovitz, & Gibofsky, 1991); positive support is perceived as beneficial and affirmative (Wortman & Conway, 1985). Taking into account the agenda of the support provider and the delivery of support, support can also be categorized as directive (giving directions or advice) or nondirective support (reflective listening) (Harber, Schneider, Everard, & Fisher, 2005). By specifying the source and function of support, researchers can better understand the multifaceted role of social support across health conditions. Cohen and Wills (1985) have proposed two mechanisms to explain the relationship between social support and health outcomes. The stress-buffering hypothesis describes social support as protective against the effects of stress in two key ways: through changing the appraisal of the stressor or by affecting the response to the stressor. In contrast, the main effect model (or additive model) conceptualizes social support as creating a positive, stable environment regardless of the stressors, resulting in positive affect, a sense of self-worth, and predictability of social contacts.

SOCIAL SUPPORT AND HEALTH OUTCOMES Social support has been linked to disease processes and mortality across many chronic health conditions. Cardiovascular, endocrine, and immune functions are mechanisms that have been studied most often to explain the relationship between social support and health. Cardiovascular Function The role of social support in cardiovascular function has been well studied, due in part to the relationship between increased cardiovascular reactivity (typically measured by blood pressure or heart rate variability) and the development of CVD (Rozanski, Blumenthal, & Kaplan, 1999). Individual differences in cardiovascular reactivity to stressors have accounted for higher risk for hypertension (Menkes et al., 1989), arteriosclerosis (Barnett, Spence, Manuck, & Jennings, 1997), and recurrent heart attacks (Manuck, Olsson, Hjemdahl, & Rehnqvist, 1992). The

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buffering effect of social support is one hypothesized mechanism influencing the relationship between cardiovascular reactivity and CVD development and progression (Uchino, 2006). Laboratory research has utilized two main protocols to understand how social support reduces cardiovascular reactivity. The passive support paradigm (Lepore, 1998) examines the cardiovascular response to a stressor while the participant is alone and then in the company of another person. Lepore describes the active support paradigm as having a second person provide varying levels and types of support during a lab task. Research measuring cardiovascular reactivity during stressful lab tasks has found that the presence of a friend can result in lower blood pressure reactivity (Kamarck, Manuck, & Jennings, 1990), as well as lower heart rates and blood pressure (Edens, Larkin, & Abel, 1992). However, lab studies have been criticized for altering received social support, not perceived social support, which is the construct more closely linked to health outcomes in naturalistic epidemiological studies (Uchino, Cacioppo, & Kiecolt-Glaser, 1996). A comparison of social support under high and low stress has found that social support is related to lower heart rate and blood pressure in the high-stress condition but has no effect in the low-stress condition (Kamarck, Annunziato, & Amateau, 1995). A meta-analysis by Uchino and colleagues (1996) also found a small but significant effect size for the relationship between blood pressure and social support. Gender also may play a role in this relationship; for example, instrumental support predicts blood pressure in women, but social resources are important for predicting blood pressure in men (Uchino, 2006). Perceived support is hypothesized to be of greater importance for cardiovascular outcomes, while received support may be more important for disease progression and recovery in the context of CVD (Uchino, Carlisle, Birmingham, & Vaughn, 2011). Network size and marital status are frequently examined as indicators of structural social support, and these factors may influence perceptions of support. Using imaging technology, Kop and colleagues (2005) examined the role of structural support and coronary artery calcification as predictors of risk for coronary artery disease. Almost half of the sample evidenced coronary artery calcification (44.8%), and social isolation (i.e., being single or widowed) was related to higher risk of calcification even after controlling for risk factors such as age and gender. Inflammatory markers, such as interleukin-6 (IL-6), fibrinogen, and C-reactive protein (CRP), may be potential mediators of the relationship between social networks and

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the development of CVD. Low social support has been found to be related to higher levels of fibrinogen, CRP, and IL-6; and middle-age women with high social support exhibit a modest buffering effect between stress and CRP (Mezuk, Roux, & Seeman, 2010). Others have suggested that the mechanisms of the effects of social support are through increases in physical activity and healthpromoting behaviors, though prior research suggests that physical activity accounts for only a portion of the variance in health outcomes (Lepore, 1998). Furthermore, Uchino (2006) theorizes that social support affects our experience of stressors by reducing the physical and psychological effects through sharing stressors, changing appraisals, and therefore reducing the physical response to stressors.

Baumgartner, Kirschbaum, and Ehlert (2003) experimentally manipulated oxytocin levels as a possible mediator of the social support–cortisol relationship. Participants were divided into three groups during a stressful social task: (1) no social support, (2) social support from a friend, or (3) social support from a friend plus nasal oxytocin. Those with social support had significantly lower cortisol, and those who received social support plus oxytocin had even more attenuated cortisol levels. In addition, higher marital support has also been shown to be related to higher levels of oxytocin (Grewen, Girdler, Amico, & Light, 2005). Oxytocin is implicated in positive social behaviors, and it may be a causal pathway between social interactions and stress reduction (Uvnas-Moberg, 1998).

Endocrine Function Immune Functioning Catecholamines (e.g., norepinephrine [NE] and epinephrine [EPI]), cortisol, and oxytocin are the most commonly studied measures of endocrine functioning. Endocrine functioning is an important area of research because of its relationship with both the cardiovascular and immune systems. Catecholamines regulate many cardiovascular processes, including arterial blood vessel constriction. Research regarding the role of social support and endocrine functioning is somewhat sparse. Studies examining the effects of social support on catecholamine levels indicate lower levels of NE and EPI with greater social support (Seeman, Berkman, Blazer, & Rowe, 1994). In a study of ovarian cancer patients, higher levels of tumor NE, but not EPI, were related to low social support, controlling for tumor grade and stage (Lutgendorf et al., 2011). Furthermore, NE levels were not related to perceived stress or measures of depression. Earlier research using plasma cortisol measurement did not find a consistent relationship between cortisol and social support (Uchino et al., 1996); however, more recent studies have utilized salivary cortisol assessment, which gives a more accurate depiction of levels and fluctuations in cortisol across the day (Uchino, 2006). Recent studies suggest that high perceived social support (Rosal, King, Ma, & Reed, 2004) and low social isolation (Grant, Hamer, & Steptoe, 2009) attenuate cortisol levels when salivary cortisol is measured at several time points. Conversely, experimentally manipulated support (Robles, 2007) and measures of social support at work (Evans & Steptoe, 2001) have not demonstrated the same effects on cortisol levels. To further examine mechanisms of social support, the endocrine system, and effects of stress, Heinrichs,

Higher social support has generally been associated with better immune functioning in healthy individuals and in the context of medical illness. Diversity of social network has been shown to be related to susceptibility to rhinovirus infections (Cohen, Doyle, Turner, Alper, & Skoner, 2003). Additionally, greater perceived social support is related to stronger immune responses to hepatitis B vaccination (Glaser et al., 1992). Perceived social support, but not received support or network size, is positively correlated with natural killer (NK) cells (a marker of immunological functioning), suggesting that perceptions of social support may increase natural immunity (Miyazaki et al., 2003). NK cell activity has been positively associated with social support in specific conditions as well, such as breast cancer (Levy et al., 1990) and ovarian cancer (Lutgendorf et al., 2005). The relationship between social support and immune functioning in patient populations with HIV is inconclusive (see Ironson & Hayward, 2008, for a review). Some research has indicated that individuals with stronger social support have higher CD4+ cell counts and lower viral loads (Theorell et al., 1995), but other studies have not supported this relationship (Ironson et al., 2005). These mixed results and differences in immune functioning outcomes in HIV-positive patient populations compared to healthy samples may be due to differences in the behaviors of social networks. For example, patients with HIV may have stressful social contacts that support unhealthy behaviors, such as addiction and medication nonadherence (Ironson & Hayward, 2008). This research serves to highlight the multifaceted nature of social support, consisting of both positive and negative influences on health.

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Research examining the role of social support with disease progression and mortality has focused primarily on patients with HIV/AIDS and CHD; there exist fewer studies in other disease areas, such as pulmonary diseases and rheumatoid arthritis. The role of social support in disease progression and mortality appears to be mixed and to vary across disease types.

yielding mixed results. One study of men and women found that greater satisfaction with social support at baseline was associated with a lower increase in the number of selfreported physical symptoms of HIV over the course of 1 year (Ashton et al., 2005). Theorell and colleagues (1995) tested the relationship between CD4+ cell counts and perceived support in a small sample of HIV-positive men. They demonstrated that lower perceived social support at the beginning of the study was related to greater declines in CD4+ levels over a 5-year period. In the longest study of social support in HIV, 96 men were followed every 6 months for up to 9 years (Leserman et al., 2002). An inverse relationship between disease progression and social support was found. Participant satisfaction with social support and the number of support persons also were evaluated. Controlling for baseline disease control and physiological variables, each point decrease in cumulative support satisfaction was associated with a 61% increased risk of progression to AIDS. In the largest longitudinal study examining HIV disease progression—including CD4+ levels, symptoms, morbidity, and mortality—larger network size predicted longer survival in individuals with AIDS (Patterson et al., 1996). For individuals with intermediate symptoms, informational support was associated with slower disease progression. For individuals who were asymptomatic at baseline, a larger network size was associated with a faster onset of symptoms. The authors hypothesized that the more rapid progression may be related to the stress of disclosing to a larger support network or possibly an indicator of a person who is more sociable, which could be related to poorer health habits. Other research has not found a relationship between social support and disease progression. In a 3-year longitudinal study, Miller, Kemeny, Taylor, Cole, and Visscher (1997) measured the association between HIV progression and social integration, size of family, and membership in groups or organizations. No measures of social support were related to HIV progression. Thornton and colleagues (2000) studied long-term HIV-positive gay men. Survival analyses indicated that perceived social support was not related to a transition to AIDS-related complex or AIDS over the 30-month study period. Overall, results of studies examining the relationship between support and HIV progression to AIDS have been mixed. It appears that social support may slow progression for individuals in more advanced disease stages, but even there, the findings are inconsistent.

HIV/AIDS

Coronary Disease

A large and growing body of literature has examined the relationship between social support and HIV progression,

Many research studies have described the relationship between low social support and increased risk of mortality

SOCIAL SUPPORT AND DISEASE RECOVERY There is a substantial research base examining the role of social support in recovery from CVD; however, there is conflicting evidence regarding the type of support that best facilitates recovery. Functional support has predicted physical recovery in a small sample of first-time MI patients (Ostergren et al., 1991). Satisfaction with support from health-care providers has also been related to self-reported physical recovery after MI, coronary artery bypass grafting, and/or coronary artery angioplasty (Yates, 1995). Functional support has also been associated with poorer functional or working capacity 1 year after MI or coronary artery bypass, possibly due to supportive family members reinforcing unhealthy sedentary behaviors (Hamalainen et al., 2000). Lett and colleagues (2007) examined network support and functional support in 2,481 participants with a recent acute MI from the Enhancing Recovery in Coronary Heart Disease (ENRICHD) trial. Perceived functional support was related to better health outcomes post-MI in patients without psychological risk factors such as depression. Patients with comorbid depression were at an increased risk for mortality despite social support, but perceived support and network support did not affect clinical outcomes regardless of the level of depression. Leifheit-Limson and colleagues (2010) examined the relationship between perceived social support, health status, and depressive symptoms in 2,411 patients over the first year of recovery from acute MI. Results indicated that low social support at baseline was related to more symptoms of angina, lower disease-specific quality of life, lower physical and mental functioning, and more depressive symptoms. These relationships were fairly consistent over the course of the year and stronger in women than in men. DISEASE PROGRESSION AND MORTALITY

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after MI (see Mookadam, Arthur, Mookadam, & Arthur, 2004, for a review). In a review of the literature examining social support in epidemiologic studies of CHD, Lett and colleagues (2005) found that in both healthy samples and populations with established CHD, low social support yielded a 1.5 to 2.0 times greater risk of additional cardiac events. A recent meta-analysis of 32 studies by Barth and associates (2010) examined the role of social support in the development and progression of CHD. There was some evidence for a relationship between functional social support and MI occurrence. Low functional social support consistently predicted cardiac and all-cause mortality in patients with CHD. As part of the ENRICHD trial, MI patients (N = 2,481) with depression and/or low perceived social support were randomized to cognitive-behavioral therapy (CBT) with adjudicative selective serotonin uptake inhibitors (SSRIs) when needed or usual care (ENRICHD Investigators, 2003). There was a significant main effect for treatment on perceived social support and depression at 6 months postrandomization. However, there were no group differences in depression by the 30-month follow-up or in perceived social support by the 42-month time point. These results are potentially explained by improvements in the usual care group over time. There were no differences between groups in recurrent MI, death from any cause, or cardiac death. Secondary analyses of this study found that baseline perceptions of social support predicted mortality, but changes in the perceptions of social support from the intervention did not predict mortality (Burg et al., 2005). Furthermore, the only treatment effects on social support were for participants with a partner and moderate perceptions of support at the time of MI. This study created an intervention that was promising in the short term but minimally effective in the long term. In the Canadian Signal-Averaged Electrocardiogram Trial, Frasure-Smith and Prince (1985) conducted an intervention to address emotional support and stress reduction in a sample of patients following MI. There was a reduction in MI recurrence over the 7-year follow-up period. Secondary analysis from the trial showed that neither living alone, having close friends, nor perceived social support was significantly related to cardiac events, acute coronary syndrome recurrences, or arrhythmic events (FrasureSmith, Lesperance, & Talajic, 1995). In this study, negative emotions (e.g., depression and anxiety symptoms) had a stronger relation to cardiac events and may have accounted for much of the association between social support and cardiac events. Frasure-Smith and colleagues (2000) later examined social support as a moderator between depressive

symptoms and cardiac mortality. They found that social support was not related to cardiac mortality, but the interaction between depression and perceived support was significant. For patients with low to moderate levels of perceived support, depression was significantly related to the 1-year prognosis. Further analyses found that among survivors who had been depressed at baseline, higher baseline social support predicted improvements in depressive symptoms over the 1-year post-MI follow-up period. There was a buffering effect for perceived support through reductions in depressive symptoms over time. Pulmonary Disease Few studies have examined the role of social support in chronic obstructive pulmonary disease (COPD). Grodner and colleagues (1996) examined satisfaction with support and size of the support network as predictors of symptom severity and pulmonary function. Social support network and satisfaction were positively related to self-efficacy and negatively correlated with depression and shortness of breath. Network size was also related to disease severity. Satisfaction with support was a significant predictor of 6-year survival, but when controlling for expiratory lung volume and shortness of breath, satisfaction was only marginally significant. Gender also moderated the relationship between support satisfaction and survival. Survival rates did not differ for men between the high and low social support groups, but women with high social support lived significantly longer than women with low social support. A more recent study of patients with COPD found that social network size, instrumental support, and perceived social support, but not social interaction, frequency predicted global functioning (Marino, Sirey, Raue, & Alexopoulos, 2008). Furthermore, when depression, disease severity, and age were controlled for, social support and self-efficacy were significant predictors of functioning. This research suggests that perceived social support and satisfaction with support may reduce morbidity and mortality in COPD patients, though these effects may vary by gender. As with HIV and coronary artery disease, the role of psychological symptoms, health-promoting behaviors, and physiological processes should be investigated further as potential moderators or mediators of the relationship between social support and mortality. Rheumatoid Arthritis Social support at the time of diagnosis with RA has been linked to functional ability and pain at 3- and 5-year

Coping and Social Support

follow-up assessments, suggesting that social support can affect long-term outcomes in RA (Evers et al., 2003). Longitudinal study of the progression of functional disability in patients with RA has described marital status as a key component in decreasing disease progression. Patients were followed for 9.5 years, completing the Health Assessment Questionnaire Index every 6 months during the study. Disability rates were higher in the 94 unmarried participants even after controlling for sociodemographic factors. This study did not examine potential mechanisms of this relationship, but it is possible that better nutrition, higher treatment adherence, and physical activity could contribute to the functional and emotional support provided by a spouse. Marital status does not always accurately depict social support and may not have captured other sources of support in the married individuals’ lives.

SOCIAL SUPPORT AND PSYCHOLOGICAL OUTCOMES Social support has been extensively studied as a predictor of psychological distress in the adaptation to health conditions, especially within the context of life-threatening illnesses such as cancer and chronic disabling conditions such as RA. The following section reviews the relationship between social support and psychological adjustment in key areas of study.

Cancer An earlier review of the literature of social support across all types of cancer indicated that patients report preferring emotional support from all sources and that emotional support is most strongly related to better psychological adjustment (Helgeson & Cohen, 1996). In the same review, results from support group–based intervention studies contradicted the descriptive and correlational research, showing inconclusive findings regarding the relationship between support and psychological adjustment. A more recent review of support group research in cancer examined 32 randomized controlled trials and indicated that group participants generally report fewer psychiatric symptoms and improved mood after the group was complete (Gottlieb & Wachala, 2007). Research examining the relationship between social support and psychological adaptation to various types of cancer has been mixed. In a review of psychosocial outcomes in women with ovarian cancer, 3 of 18 studies

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found a relationship between low perceived social support and increased anxiety and depression; however, the measurement of social support was not consistent across studies (Arden-Close, Gidron, & Moss-Morris, 2008). A similar review of psychosocial outcomes in men with prostate cancer found few rigorous studies on psychological distress in this population, and only three studies described the relationship between low social support and increased psychological distress (Bloch et al., 2007). Studies in specific cancers have attempted to account for the differences in patient populations, as well as the disease course of different cancer diagnoses. A crosssectional study of patients with head and neck cancer 1 year postdiagnosis found relationships between perceptions of emotional support with functional ability, Beck Depression Inventory scores, and health-related quality of life; however, this study did not account for stage of cancer or social support at diagnosis (Karnell, Christensen, Rosenthal, Magnuson, & Funk, 2007). In a cross-sectional sample of gynecologic cancer survivors 2 to 10 years posttreatment, perceived support, structural support, traumatic stress, and depression symptoms were measured (Carpenter, Fowler, Maxwell, & Andersen, 2010). Both perceived and structural support moderated the relationship between physical symptoms and cancer-specific traumatic stress, supporting the stress-buffering hypothesis of social support. There was a main effect for perceived support and depressive symptoms, but no interaction between physical symptoms and support. Structural support did not have a direct or moderating effect on depressive symptoms. The authors suggest that support may be important for integrating the cancer experience into the individuals’ life stories, and this may be facilitated through telling one’s story to social contacts. The role of social support in breast cancer has been well studied, and results are more conclusive than for other types of cancer. In a sample of postoperative breast cancer patients, perceptions of support were related to lower depressive symptoms (Komproe, Rijken, Ros, Winnubst, & Hart, 1997). Kornblith and colleagues (2001) examined social support in the relationship between stressful life events and psychological adjustment in 179 women with stage II breast cancer. They determined that the additive model best described psychological distress; namely, woman with low support and the perception of stressors as highly distressing had worse outcomes, with no interaction between stressors and support. Their results suggest that social support must be perceived as excellent and be firmly in place before the occurrence of stressors to experience reduced distress.

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In a study of posttraumatic stress disorder (PTSD) in patients undergoing bone marrow transplant for cancer treatment, social support at 1 month before transplant accounted for 6% of the variance in the severity of PTSD symptoms at 5 months posttransplant, after controlling for baseline psychological distress (Jacobsen et al., 2002). There also was a significant relationship between social support and avoidance coping in predicting PTSD symptoms, accounting for a further 7% of the variance. Kangas, Henry, and Bryant (2005) prospectively examined posttraumatic symptoms at diagnosis and at a 6-month followup in participants with head, neck, or lung cancer. There was a moderately negative relationship between social support and posttraumatic stress symptoms at baseline and also PTSD cases at 6 months postdiagnosis. Predictive models indicated that dissociative responses at diagnosis were the only significant predictor of PTSD cases at 6 months, suggesting social support could play a protective but not direct role in the development of PTSD. As positive psychology gains in popularity, more research is looking at posttraumatic growth in cancer patients. In a sample of postoperative breast cancer patients, there was a moderate relationship between posttraumatic growth and perceptions of social support (Bozo, Gundogdu, & Buyukasik-Colak, 2009). Furthermore, social support from a private person, such as a spouse, moderated the relationship between optimism and posttraumatic growth. Schroevers, Helgeson, Sandernnan, and Ranchor (2010) examined emotional support and posttraumatic growth longitudinally in 206 cancer survivors with a variety of cancer diagnoses. Received emotional support 3 months after diagnosis, but not perceived support, significantly predicted posttraumatic growth 8 years later. Other research has not found a relationship between perceived social support and posttraumatic growth in a sample of bone marrow transplant patients (Widows, Jacobsen, Booth-Jones, & Fields, 2005) or in patients diagnosed with breast cancer (Cordova, Cunningham, Carlson, & Andrykowski, 2001). HIV/AIDS Research on the psychological adaptation to HIV/AIDS has primarily focused on depression because of the high comorbidity between the two conditions. Prior research suggests that 32% of individuals with HIV met criteria for a mood disorder over the past year (Gaynes, Pence, Eron, & Miller, 2008). The stigma associated with HIV can increase the risk of social isolation, and the stress of disclosure can further affect the amount or type of social

support an HIV-positive individual can access. Older cross-sectional research described a link between perceptions of available support with distress in patients with AIDS (e.g., Hays, Chauncey, & Tobey, 1990) and earlystage HIV (Grassi, Caloro, Zamorani, & Ramelli, 1997). Network size and satisfaction with support have also been associated with lower depression symptoms (Gonzalez et al., 2004). In aging individuals with HIV, Mavandadi, Zanjani, Ten Have, and Oslin (2009) found similar levels of instrumental support or frequency of social interactions in the younger and older cohort, but they also found that the older adult group perceived better quality of social contacts, which was related to lower depressive symptoms. In addition, unsupportive social interactions are an important consideration for individuals with HIV, especially because of stigma. Unsupportive interactions have been shown to predict a significant amount of variance in mood disturbance beyond the variance accounted for by size and satisfaction with the social network in White (Ingram, Jones, Fass, Neidig, & Song, 1999) and Black HIV-positive men (Song & Ingram, 2002). Rheumatoid Arthritis The chronic course and unpredictable nature of RA can result in significant pain and functional disability, which affect psychological outcomes for patients. Psychological adjustment to RA is related to perceived available support, received support (e.g., Doeglas et al., 1994), and structural support (e.g., Penninx et al., 1997). Furthermore, instrumental support has been associated with lower disability in valued life activities 1 year later (Neugebauer & Katz, 2004). In a 13-year longitudinal study of patients with shortor long-term RA, the stress-buffering hypothesis was supported for short- but not long-term RA (Strating et al., 2006). Patients rating higher satisfaction with their social companionship reported less distress, possibly due to these patients being closer to diagnosis, acclimation to the impact of the disease on their lives, or to severity of disease. Another longitudinal study tested social support as a moderator between pain and depressive symptoms in patients with RA over the course of 1 year (G. K. Brown, Wallston, & Nicassio, 1989). Size of social network was not related to depression, but the quality of emotional support predicted depression when controlling for demographic factors, pain, and disability. Social support, however, was not found to moderate the relationship, which is consistent with research (Doeglas et al., 2004).

Coping and Social Support

MECHANISMS FOR THE EFFECT OF SOCIAL SUPPORT ON WELL-BEING Social support may affect psychological distress both directly and through buffering against the deleterious consequences of stress (Cohen, 1988). Main effects of social support may be through providing informational support, facilitating social integration, and providing resources such as caregiving or economic support. The indirect effects of social support can be evidenced through the social network helping with cognitive reappraisal of challenging situations, enhancing self-esteem and selfefficacy, or through the influence of the social network on health-related behaviors. Mechanisms may become clearer with more longitudinal work that takes into account developmental and systems influences on an individual’s ability to receive and benefit from social support.

CONCLUSIONS AND DIRECTIONS FOR FUTURE RESEARCH Social support continues to be widely researched across all of health psychology; however, differences in the conceptualization of support and support measurement have led to widely varying results. Social support has been shown to affect health outcomes in terms of cardiovascular functioning, endocrine functioning, and immune systems of healthy individuals. Across several diseases, social support has been related to slower disease progression, increased adherence, and lower mortality. Results within HIV-positive samples have been less consistent, in part due to complexities of the social network and the added stress of disclosure and social stigma. This research highlights the need to consider both the positive and negative aspects of social support rather than conceptualizing it as only a beneficial construct. Future research should further examine the role of culture in the provision of social support. Some research has suggested cultural differences among the psychological effects of social support. Although social support may generally be beneficial across cultures, further understanding of the nuances of support within different cultures could serve to improve outcomes and intervention research. Also, as a generation raised on the Internet comes of age, more questions exist on the role of electronic media and social support. A burgeoning field of research is examining the role of blogging, online chat rooms, and virtual support groups in chronic illness populations. More research into the role of social contacts via the Internet

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and semipublic forums (e.g., Facebook, Twitter) is needed to understand the amount of support individuals garner from these contacts. The last decade has brought more attention to the mechanisms between social support and health outcomes; however, fewer studies have looked at possible interventions to improve support. Some research has suggested that having adequate social support before a health problem begins is important to health outcomes and that interventions should target at-risk populations rather than individuals in the midst of a health crisis. Although social support in the context of health is widely studied, there is still room for further research into how best to utilize social support in improving health outcomes and slowing disease progression.

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CHAPTER 4

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions JEFFREY R. STOWELL, THEODORE F. ROBLES, AND HEIDI S. KANE

STRESS-IMMUNE BIDIRECTIONAL PATHWAYS 79 ACUTE VERSUS CHRONIC STRESS 81 INDIVIDUAL PSYCHOLOGICAL DIFFERENCES 84 SOCIAL RELATIONSHIPS AND PSYCHONEUROIMMUNOLOGY 87

PSYCHOLOGICAL INTERVENTIONS 91 CONCLUSION 94 REFERENCES 95

The field of psychoneuroimmunology (PNI) addresses how psychological factors (particularly stress) influence the immune system and physical health through neural and endocrine pathways. These relationships are especially relevant to immunologically mediated health problems, including infectious disease, cancer, autoimmunity, allergy, and wound healing. In 2007, the Psychoneuroimmunology Research Society’s flagship journal, Brain, Behavior, and Immunity, published a series of papers summarizing the progress of PNI over the previous 20 years. As noted by Ader and Kelley (2007) in their overview of the series, the field has defined itself as a valid interdisciplinary area, complete with societies, publications, and grants to support it. PNI researchers have moved past the question of whether there are bidirectional connections between the nervous and immune systems to address the conditions under which these connections influence each other, their developmental origins, and clinical applications. Research on PNI continues to grow rapidly, as indicated by the fact that more than half of PsycInfo’s records retrieved with the search term psychoneuroimmunology were published in the past 10 years (Stowell, personal communication, Feb. 18, 2011). In this chapter, we do not attempt to address every topic of research in PNI. For those interested in a comprehensive resource on PNI, we recommend Robert Ader’s two-volume edited book Psychoneuroimmunology, now in its fourth edition (Ader, 2007). Our main goal is to explain the core principles underlying neural-immune interactions and then provide

an overview of selected studies that illustrate the functional relationships of these interactions in laboratory and clinical settings. First, we introduce two major physiological systems that modulate immune function and then provide evidence for bidirectional neural-immune relationships in the context of acute and chronic stress. Next, we explore the psychosocial factors that may be important in moderating and mediating these relationships, including mood, social support, and interpersonal relationships. Finally, we review PNI intervention strategies that may be beneficial in promoting balanced health for mind and body.

STRESS-IMMUNE BIDIRECTIONAL PATHWAYS HPA Axis Activation of the hypothalamic-pituitary-adrenal (HPA) axis by psychological events, such as stress, results in a predictable cascade of hormone release (see Figure 4.1). Neurons in the hypothalamus release corticotropin releasing hormone (CRH), which stimulates the anterior pituitary to release adrenocorticotropin hormone (ACTH) into the general circulation. Cells in the adrenal cortex then respond to ACTH by releasing glucocorticoids, predominantly cortisol in humans and corticosterone in rats. In addition to its catabolic and glucoregulatory effects, cortisol exerts suppressive effects at nearly every level of the inflammatory immune response. These 79

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Brainstem autonomic centers

Hypothelamus

CRH Pituitary Gland ACTH

Sympathetic Nerves NEPI

Adrenal Cortex

Adrenal Medulla

Cortisol

EPI

Cytokines

Parasympathetic Nerves (Vagus)

Immune system

NEPI

ACH

Cytokines

The hypothalamic-pituitary-adrenal (HPA), sympathetic, and parasympathetic pathways are represented. Abbreviations: CRH— corticotropin releasing hormone, ACTH—adrenocorticotropin hormone, NEPI—norepinephrine, EPI—epinephrine, ACH—acetylcholine.

Figure 4.1 Bidirectional pathways mediating brain-immune interactions

immunological effects may be adaptive, as they can limit a potentially overactive immune response that could result in inflammatory or autoimmune disease (Munck & Guyre, 1991; Sternberg, 1997, 2006). Although glucocorticoids exert anti-inflammatory effects, they have a more complex role in immune modulation than originally thought. For example, glucocorticoids suppress the production of proinflammatory cytokines (chemicals released by immune cells that trigger inflammation, e.g., IL-1, IFN-γ, and TNF-α) that promote a cell-mediated Th-1 type immune response important for immunity against viruses and tumor cells, but they enhance the production of cytokines (e.g., IL-4) that promote a humoral (antibody mediated) Th-2 type immune response (for reviews, see Elenkov, 2004; Sternberg, 2006). This shift is probably driven by glucocorticoid inhibition of IL-12 production by antigen presenting cells, which normally stimulate na¨ıve Th-0 cells to differentiate into Th-1 cells (Elenkov, 2004; Sternberg, 2006). Thus, glucocorticoids released during stress may shift the type of immune defense from a cell-mediated response toward an antibody-mediated response. This shift may or may not be adaptive, depending on the nature of the pathogen and the host’s disease status. Although high levels of cortisol can inhibit

immune function at nearly every level from differentiation, migration, and proliferation to decreased cytokine production, low levels of glucocorticoids can be equally harmful, resulting in uncontrolled inflammatory diseases (Sternberg, 2006). Glucocorticoids also induce a redistribution of immune cells from the blood to other organs or tissues (McEwen et al., 1997). Thus, a drop in peripheral blood lymphocyte counts may mistakenly be interpreted as immunosuppression when the cells may simply be migrating to other organs or tissues, such as the skin, where they are more likely to encounter antigen (Dhabhar & McEwen, 1997). This illustrates the complexity of understanding the pattern of changes in immune function, particularly when researchers report only one or two measures of immune function. Thus, the term immune dysregulation is probably a more accurate description of underlying immune changes than simply immune suppression or enhancement. Although the HPA axis significantly modulates immune function, other pathways also exist, as evidenced by the fact that stress produces immune suppression, despite removal of the adrenal glands (Keller, Weiss, Schleifer, Miller, & Stein, 1983). Another primary route through which the nervous system can alter immune function is the autonomic nervous system (Felten, Felten, Carlson, Olschowka, & Livnat, 1985; Irwin, 1993).

Autonomic Nervous System Generally, the sympathetic and parasympathetic branches of the nervous system exert immunosuppressive effects in regional areas of the body, except in cases where catecholamines are released into the general circulation (for review, see Sternberg, 2006). As with the HPA axis, the hypothalamus is centrally involved in the regulation of autonomic nervous system activity. Neurons in the hypothalamus project to autonomic centers in the lower brain stem and spinal cord, including preganglionic sympathetic neurons (Luiten, ter Horst, Karst, & Steffens, 1985). During a classical fight or flight response, sympathetic nerve terminals release norepinephrine onto various organs, including the adrenal medulla, which releases the catecholamines epinephrine and norepinephrine into the bloodstream, where they can bind to receptors on immune cells, thereby influencing their activity (see Figure 4.1). Sympathetic Nervous System (SNS) Sympathetic nerve terminals innervate primary and secondary lymphoid tissue and are physically near lymphocytes and macrophages in synaptic-like contacts (Felten,

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

Ackerman, Wiegand, & Felten, 1987; Felten et al., 1985; Felten & Olschowka, 1987; Madden, Rajan, Bellinger, Felten, & Felten, 1997). Consequently, catecholamines released from either the adrenal medulla or local sympathetic nerves (and neuropeptides released locally) may influence regional (e.g., thymus, spleen, lymph nodes) immune function through adrenergic and cholinergic receptors on lymphocytes and induce changes in the migration and chemotaxis of lymphocytes (for review, see Sternberg, 2006). For example, adrenergic agonists decrease Th-1 cytokine production (e.g., IL-2 and IFN-γ) but have no effect on Th-2 cytokine production (e.g., IL-4; Ramer-Quinn, Baker, & Sanders, 1997; Sanders et al., 1997). However, this may true only of cloned Th-1 and Th-2 cells, as newly generated primary effector Th-1 and Th-2 cells did not respond to norepinephrine or β2 receptor agonists (Ramer-Quinn, Swanson, Lee, & Sanders, 2000). Natural killer (NK) cells, thought to be important in the first-line defense against tumor and virus-infected cells, appear to be especially sensitive to catecholamines, increasing in number after infusion of epinephrine in human volunteers (Crary et al., 1983). In an animal model of acute stress, NK cell cytotoxicity (NKCC) declined following stress, and this effect was blocked using methods that interfered with sympathetic nervous system activity (Ben-Eliyahu, Shakhar, Page, Stefanski, & Shakhar, 2000). However, overall NK distribution and cytotoxicity may not reflect the subtle underlying differentiation of NK cells, as other research suggests functionally distinct subsets of NK cells that either have cytotoxic activity (CD56dim) or play an immunoregulatory role by secretion of IFN-γ, TNF-β, and other cytokines (Cooper et al., 2001). A 30-minute in vivo administration of epinephrine selectively increased blood counts of various immune cells, including NK subtypes with cytotoxic activity, that closely paralleled the changes in cell adhesion molecules in vitro, suggesting that catecholamines at levels comparable to those achieved during acute stress or exercise are sufficient to induce rapid mobilization of immune cells (Dimitrov, Lange, & Born, 2010). The increase in NK cell number is so reliable that it is considered an integral part of the sympathetic fight–flight response (Bosch, Berntson, Cacioppo, & Marucha, 2005).

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to immune regulation by the parasympathetic nervous system is known as the inflammatory reflex (Tracey, 2002, 2009). In this reflex, afferents on the vagus nerve detect the presence of proinflammatory cytokines (e.g., IL-1 and TNF) produced by immune cells and subsequently send neural signals to the brain, leading to adaptive physiological changes including the classic illness behaviors of fever, decreased activity, and increased sleep (Maier, Goehler, Fleshner, & Watkins, 1998). At the same time, vagal afferents activate reflex arcs in the brain stem that subsequently serve to limit pro- (but not anti-) inflammatory cytokine production via action on cholinergic receptors of macrophages, although it is not clear yet if the source of the acetylcholine is vagal efferents or other local sources (Tracey, 2002, 2009). In this regard, the immune system acts as a diffuse sensory organ by providing information about antigenic challenges to the brain, which in turn regulates behaviors appropriate to deal with these challenges (Maier & Watkins, 1998). Together, the HPA axis and ANS are major pathways by which the nervous system can influence immune function, and vice versa. However, other routes exist, such as through local release of neuropeptides or through other hormonal routes (Sternberg, 2006). Future research may find these other pathways to be equally important in the regulation of neural-immune interactions. ACUTE VERSUS CHRONIC STRESS In comparing the effects of acute and chronic stress on immune function, different patterns have emerged, depending on the model of stress. Typically, animal models of stress include some form of physical restraint or social disruption (e.g., isolation or change in social hierarchy); human models of stress rely on tasks that require mental or physical effort. Acute stressors are often presented in a laboratory setting and vary in duration from minutes to hours, while chronic stressors are typically naturally occurring and persist for weeks or months (Dhabhar & McEwen, 1997). In students, the stress of taking major academic examinations is often preceded by a period of anxiety that varies (Bolger, 1990) and, therefore, may fall somewhere along the continuum of acute and chronic stress.

Parasympathetic Nervous System (PNS) The vagus nerve is the primary afferent and efferent nerve of the parasympathetic nervous system, which innervates the major internal organs and generally has effects on target organs that oppose those of the sympathetic nervous system. The most notable recent discovery related

Acute Stress Studies of acute stress in humans typically employ a mentally challenging task such as a Stroop task, mental arithmetic, or giving a speech, often in conjunction with social stress created from performing these tasks in

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the presence of others. The Trier Social Stress Test is comprised of mental arithmetic and a public speaking task that, together, produce reliable and significant increases in HPA axis activation and heart rate (Kirschbaum, Pirke, & Hellhammer, 1993). Variations of these laboratory stressors, which generally lasted no more than 20 minutes, were associated with lower CD4+/CD8+ (T helper/T cytotoxic-suppressor) cell ratios, poorer immune blastogenic responses, increased catecholamine release, increased mucosal barrier function, and consistent increases in NK cell number and cytotoxicity (Bachen et al., 1992, 1995; Bosch et al., 2005; Bosch, de Geus, Veerman, Hoogstraten, & Nieuw Amerongen, 2003; Burleson et al., 1998; Cacioppo et al., 1995; Herbert et al., 1994). Furthermore, some of these stress-induced immune changes were blocked by an adrenergic receptor blocker (Bachen et al., 1995), suggesting that they were largely mediated by sympathetically activated catecholamine release. Animal studies further suggest that acute stress can enhance certain measures of cell-mediated immunity, which would be functionally adaptive in a fight or flight situation (Dhabhar & McEwen, 1997). For example, acutely stressed animals had a greater primary inflammatory response to antigen, as evidenced by greater leukocyte infiltration and greater inflammatory cytokine production than control animals (Viswanathan, Daugherty, & Dhabhar, 2005). In addition, acute restraint stress in rodents during the sensitization or challenge phase enhanced delayed type hypersensitivity (DTH) responses (Dhabhar & McEwen, 1997; Dhabhar, Satoskar, Bluethmann, David, & McEwen, 2000). In humans, the nature of the acute stressor may differentially affect sympathetic or parasympathetic output, resulting in different patterns of immune regulation. For example, participants undergoing a memory test had increased cardiac sympathetic activity and decreased parasympathetic activity but had primarily increased parasympathetic cardiac activity when viewing an unpleasant surgical video (Bosch et al., 2003). Generally, the surgical video induced greater increases in salivary protein levels, suggesting that not all acute stressors produce comparable autonomic responses. Certain measures of autonomic cardiovascular function seem to correlate with immune responses, suggesting a link between the two. In accordance with Tracey’s (2009) review of vagal inhibitory effects on inflammation, Weber and colleagues (2010) reported that healthy males who had undergone a brief laboratory stressor (i.e., manometer test, followed by mental arithmetic) differed in their stress recovery responses, depending on their resting level of

heart rate variability (HRV), a measure of parasympathetic vagal tone. Participants with low HRV had longer poststress recovery times of diastolic blood pressure, cortisol levels, and TNF-α, suggesting that low vagal tone failed to limit the physiological responses (including production of inflammatory markers) during stress. The authors speculated that low HRV could be a risk factor for both cardiovascular and autoimmune disorders (Weber et al., 2010). This is in harmony with a review of other studies that suggest low HRV has a moderate negative relationship with inflammatory markers (e.g., C-reactive protein, IL-6) in clinical and nonclinical samples (Haensel, Mills, Nelesen, Ziegler, & Dimsdale, 2008). In a recent meta-analysis of 30 studies that measured proinflammatory markers during acute laboratory stress, the authors found significant increases of circulating levels of IL6 and in vitro levels of IL-1β but no significant effects for C-reactive protein and TNF-α (Steptoe, Hamer, & Chida, 2007). They also mention that possible mechanisms for increased concentration of plasma cytokines include a decrease in plasma volume, new synthesis of cytokines, or mobilization of immune cells from the vascular endothelium into the blood. In summary, acute stress can alter autonomic cardiovascular function and enhance some aspects of immune function, but there are considerable individual differences. Academic Examination Stress Academic examinations can produce high levels of anxiety for some college students. The timing of academic exams across courses often results in varying levels of stress related to preparing for and taking these exams, culminating in a final exam period at the end of the semester that is often used as a naturalistic stressor for PNI studies. Indeed, some of the earliest PNI studies used medical students as participants during final exams and found that depression and loneliness in first-year medical students was higher during final exams than in a baseline period (Kiecolt-Glaser et al., 1984). However, in contrast to studies that used laboratory stressors, NKCC decreased during final exams, and students who reported the highest levels of loneliness had the lowest NKCC (Kiecolt-Glaser et al., 1984). In other studies by Kiecolt-Glaser and colleagues, examination stress also impaired blastogenic responses (Glaser, Kiecolt-Glaser, Stout, et al., 1985; Glaser et al., 1993; Glaser, Rice, Speicher, Stout, & Kiecolt-Glaser, 1986) and decreased production of IFN-γ (Glaser et al., 1986). Researchers in another laboratory found examination stress induced increases in leukocyte numbers (Maes et al., 1999), serum antibody levels (Maes et al., 1997), and cytokine production (Maes et al., 1998).

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

Several findings underscore the clinical importance of the immunological changes associated with examination stress. First, students who reported greater distress during exams took longer to seroconvert after inoculation with a hepatitis B vaccine (Glaser et al., 1992). They also had lower antibody titers to the vaccine 6 months postinoculation and a less vigorous virus-specific T cell response. Furthermore, examination stress was associated with reactivation of two latent herpesviruses, Epstein Barr Virus (EBV) and herpes simplex virus (HSV) type1 (Glaser, Kiecolt-Glaser, Speicher, & Holliday, 1985; Glaser, Pearl, Kiecolt-Glaser, & Malarkey, 1994). Finally, examination stress prolonged the time to heal a standardized oral wound compared to a low stress period (3 days or 40% longer to heal); in fact, none of the students healed as fast during exams as they did during vacation (Marucha, Kiecolt-Glaser, & Favagehi, 1998). This delay in wound healing was accompanied by a reduction in the production of the proinflammatory cytokine IL-1β, which, in addition to IL1-α, is important in the early stages of wound healing (Barbul, 1990; Lowry, 1993). A study by Garg and colleagues (2001) provided further support for the clinical consequences of academic stress for skin-related conditions. Noting that inflammatory skin conditions such as psoriasis and atopic dermatitis have been linked to stress, they compared students’ skin barrier recovery during final examinations to a low stress condition. Perceived stress during final exams was correlated with lower skin barrier function after a tape-stripping procedure, suggesting that examination stress may be sufficient to inhibit healing of skin-related diseases (Garg et al., 2001). Students are not the only individuals who experience stress in an academic setting. Compared to a baseline condition, experienced faculty teaching a large lecture class on the second day of the term reported greater psychological stress and had increased salivary cortisol levels and alpha amylase levels and greater IL-2, TNF-α, and IL-4 (Filaire et al., 2011). Cortisol levels were correlated with higher IL-4 production, suggesting that the increase in this Th-2 cytokine was due to changes in glucocorticoid levels. The increase in Th-1 cytokines is somewhat consistent with an earlier study in which highanxiety students anticipating academic examinations had higher levels of Th-1 proinflammatory cytokines but lower IL-4 production (Maes et al., 1998). In some ways, academic examination stress appears to have immunological consequences similar to acute laboratory stressors (e.g., increased circulating peripheral leukocytes). Yet, other results are more consistent with the effects of chronic stress (e.g., suppressed NKCC).

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The different findings may be related to methodological concerns specifically connected to academic examinations (Stowell, 2003) or to the fact that academic examinations contain elements of both acute and chronic stressors. Chronic Stress By definition, chronic stress is comprised of stressful events that persist over time (Bloch, Neeleman, & Aleamoni, 2004). Examples include unemployment, social relationships, divorce, and bereavement. In addition, providing daily care for patients who have a serious illness places great demands on the caregiver, resulting in stress that may persist for years. Caregivers of family members with progressive dementia disorders, primarily Alzheimer’s disease, report greater distress and depression and less social support than noncaregivers (Bodnar & Kiecolt-Glaser, 1994; Bristow, Cook, Erzinclioglu, & Hodges, 2008; Cohen & Eisdorfer, 1988; Redinbaugh, MacCallum, & Kiecolt-Glaser, 1995). Whereas acute stress may enhance some aspects of immunity through catecholamine-mediated pathways, chronic stress generally impairs immune function via glucocorticoid-mediated pathways (Dhabhar, 2008). For example, caregiving was associated with lower percentages of T helper and total T cells and poorer cellular immunity against latent EBV (Kiecolt-Glaser & Glaser, 1987). In a longitudinal study of spousal caregivers and community matched controls, caregivers showed greater decrements in cellular immunity over time as measured by decreased blastogenic responses (Kiecolt-Glaser, Dura, Speicher, Trask, & Glaser, 1991). Additional studies have confirmed that caregiving is associated with reduced blastogenic responses (Castle, Wilkins, Heck, Tanzy, & Fahey, 1995; Glaser & Kiecolt-Glaser, 1997), decreased virus-specific-induced cytokine production (KiecoltGlaser, Glaser, Gravenstein, Malarkey, & Sheridan, 1996), inhibition of the NK cell response to recombinant IL-2 and rIFN-γ (Esterling, Kiecolt-Glaser, & Glaser, 1996), and reduced sensitivity of lymphocytes to certain effects of glucocorticoids (Bauer et al., 2000). The latter changes may be particularly important in long-term regulation of immune function. For example, in an animal model of chronic social stress, rhesus macaques were exposed to unstable social relationships by varying the size and composition of cagemates several times per week for 16 months (Cole, Mendoza, & Capitanio, 2009). Although cortisol levels and lymphocyte counts were similar to monkeys in a stable social condition, there was an overall negative relationship between blood cortisol levels and lymphocyte counts across all subjects. Over time, however, chronic stress altered the glucocorticoid

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regulation of lymphocyte redistribution such that subjects in the unstable group no longer had a significant relationship between cortisol levels and lymphocyte counts, suggesting that glucocorticoid regulation of lymphocytes was blunted (Miller, Chen, et al., 2008). This is consistent with other findings that suggest chronic stress impairs HPA axis regulation. Long-term reduction in the sensitivity of lymphocytes to glucocorticoids may lead to exaggerated immune responses, in turn leading to increased susceptibility to inflammatory diseases (for review, see Sternberg, 2006). Current research is aimed at identifying cellular mechanisms for glucocorticoid dysregulation in chronic stress. In a small group of caregivers of patients with malignant brain cancer (diagnosed on average 8 months previously), transcriptional control pathways in monocytes for the immunosuppressive effects of glucocorticoids were blunted, while transcriptional activity of proinflammatory pathways (NF-kB) were enhanced and accompanied by increased proinflammatory markers, including C-reactive protein and IL-1ra, compared to a control group (Miller, Chen, et al., 2008). Because caregivers and control participants had comparable cortisol levels and numbers of glucocorticoid receptors, the authors suggest that chronic stress impaired glucocorticoid regulation at the transcriptional level (Miller, Chen, et al., 2008). Similar to acute stress, chronic stress can have significant clinical consequences. Following influenza vaccination, caregivers were less likely to achieve a fourfold increase in antibody titers than controls (Kiecolt-Glaser et al., 1996; Vedhara et al., 1999), which suggests greater susceptibility or more serious illness in the event of exposure to influenza virus. Caregivers also took 24% longer to heal a standardized punch biopsy wound (KiecoltGlaser, Marucha, Malarkey, Mercado, & Glaser, 1995) and reported a greater number and duration of illness episodes, with more physician visits than control subjects (Kiecolt-Glaser & Glaser, 1991). In addition to these effects, a recent review article summarizes other measures of potential immunological dysregulation, including increased production of proinflammatory cytokines and accelerated cellular aging (Gouin, Hantsoo, & KiecoltGlaser, 2008). The immune dysregulation associated with caregiving may be especially relevant for older adults, as cellular immunity declines with age and is associated with greater morbidity and mortality, especially due to infectious diseases (Murasko, Gold, Hessen, & Kaye, 1990; Wayne, Rhyne, Garry, & Goodwin, 1990). However, even in younger populations, longer-term stress (more than 1 month) has been associated with immune dysregulation

and increased susceptibility to infection by a common cold virus (Cohen et al., 1998). Individuals under the demands of chronic stress may also respond differently from nonchronically stressed individuals to acute stressors. For example, caregivers exposed to an acute laboratory stressor (speech task) had reduced chemotaxis of peripheral blood mononuclear cells to two different attractants in vitro compared to a nonchronically stressed control group that had increased chemotaxis following the stressor (Redwine et al., 2004). Together, these studies support the argument that immunological dysregulation associated with chronic stress does not necessarily undergo habituation over time. Rather, these effects appear to be present for the duration of the stressor and, in some cases, persist even after the stressor is no longer present (Esterling, Kiecolt-Glaser, Bodnar, & Glaser, 1994). Studies of chronic stress fit well with Hans Selye’s general adaptation syndrome, in which prolonged stress, lasting several months, depletes the body’s resources, resulting in greater susceptibility to disease (Selye, 1936). However, individual factors may play a moderating role in the effects of stress on immune function. INDIVIDUAL PSYCHOLOGICAL DIFFERENCES Individual differences in emotional and coping responses may account for some of the variation in neuroendocrine and immunological changes associated with stress. These individual differences may also play a role in states of disease progression. Negative and Positive Affect Negative affect is defined as general subjective distress and includes a range of negative mood states, such as depression, anxiety, and hostility, while positive affect includes feelings of energy, excitement, and enthusiasm (Watson & Pennebaker, 1989). Negative emotions are related to a range of diseases whose onset and course may be influenced by the immune system, particularly by inflammation resulting from the production of proinflammatory cytokines (Kiecolt-Glaser, McGuire, Robles, & Glaser, 2002). Cohen, Tyrell, and Smith (1991) demonstrated an association between negative affect and rates of respiratory infection and clinical colds following intentional exposure to five different respiratory viruses. A dose–response relationship was found between rates of respiratory infection/clinical colds and increased levels of a composite measure of psychological stress that included negative

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

affect, major stressful life events, and perceived ability to cope with current stressors. In further analyses of these data, negative affect predicted the probability of developing a cold across the five virus types independent of negative life events (Cohen et al., 1991). Furthermore, the higher illness complaints in state, but not trait, negative affect individuals were associated with increased severity of colds and influenza, as seen in the amount of mucus produced (Cohen et al., 1995). However, negative affect was not related to the development of clinical colds among already infected individuals but rather was associated with individuals’ susceptibility to infection (Cohen, Tyrrell, & Smith, 1993; Stone et al., 1992). In another study, baseline personality variables thought to be characteristic of negative affect (high internalizing, neuroticism, and low self-esteem) predicted lower titers of rubella antibodies 10 weeks postvaccination in subjects who were seronegative prior to vaccination (Morag, Morag, Reichenberg, Lerer, & Yirmiya, 1999). Dispositional positive affect and the expectation of positive outcomes (i.e., optimism) have not been studied to the extent of negative affect, and, in cases where they have, generally the findings are not as strong as those of negative mood. Yet, a number of studies support the idea that immune function may be enhanced by positive expectations. In a study that examined optimism and immune function in first-year law students at multiple time points, dispositional optimism was not related to immune measures, but higher situational optimism, defined as positive expectations specific to academic performance, was associated with higher NKCC (Segerstrom, Taylor, Kemeny, & Fahey, 1998). In contrast, in a sample of healthy women followed for 3 months, dispositional optimism was associated with a greater reduction in NKCC following high stress that lasted longer than 1 week compared to less optimistic individuals (Cohen et al., 1999). More recently, changes in optimistic expectancies of first-year law students predicted changes in cellular immunity as measured by DTH, which was partially accounted for by positive but not negative affect (Segerstrom & Sephton, 2010). Finally, in early-stage breast cancer patients who had surgery, optimism had a buffering effect in those who were high in stress, such that NKCC was not as low as in those who were high in stress and low in optimism (Von Ah, Kang, & Carpenter, 2007). In an attempt to explain discrepant findings related to optimism and immune function, Segerstrom (2005) proposed the engagement hypothesis of optimism, which states that “when circumstances are easy or straightforward, optimism will be positively related to immunity

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because engagement can lead to termination of the stressor (e.g., via problem-solving). However, when circumstances are difficult or complex, optimism will be negatively related to immunity because it leads to ongoing engagement with persistent stressors” (p. 197). This hypothesis was supported in several studies of law students, in which she found that optimism had a positive correlation with better immune function in law students who were living away from home (and had fewer competing extramural interests). In contrast, optimism was negatively correlated with immune function when students were living at home to attend school and presumably had a greater number of competing interests (Segerstrom, 2005). Thus, optimism may confer benefits to health when optimistic persistence is likely to result in success. In addition to dispositional optimism, situational mood changes may also be related to immune function. The relationships between normal daily mood fluctuations and immune variables have been evaluated by tracking subjects’ naturalistic daily mood changes and by inducing positive and negative mood states in the laboratory. In the first case, negative mood over the course of 2 days was associated with reduced NKCC, but there was also evidence that positive mood moderated this association (Valdimarsdottir & Bovbjerg, 1997). Although immune function was not assessed, greater negative mood associated with taking an academic examination or doing homework predicted a greater number of symptoms of illness measured several days later (Stowell, Tumminaro, & Attarwala, 2008). Consistent with findings of studies on negative affect, clinical depression has been associated with reduced NKCC (Irwin, Patterson, et al., 1990; Irwin, Smith, & Gillin, 1987), decreased lymphocyte proliferation to mitogens (Miller, Cohen, & Herbert, 1999; Schleifer et al., 1984), poorer specific proliferative response (memory) to varicella-zoster virus (Irwin et al., 1998), and decreased DTH (Hickie, Hickie, Lloyd, Silove, & Wakefield, 1993). A meta-analytic review concluded that clinically depressed individuals, especially older and hospitalized individuals, have lower lymphocyte proliferative responses to mitogens and lower NKCC than nondepressed, healthy controls (Herbert & Cohen, 1993). One potential pathway for the association of depression and immune function includes alterations in health behaviors, such as sleep, exercise, smoking, diet, and alcohol and drug use (Kiecolt-Glaser & Glaser, 1988). Patients with depression or alcoholism showed reduced NKCC relative to controls, and dually diagnosed patients showed even greater NKCC reductions (Irwin, Caldwell,

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et al., 1990). Physical activity mediated the association between mild to moderate depression and reduced proliferation to mitogens in ambulatory female outpatients (Miller et al., 1999). Depressed men who smoked light to moderate amounts had the lowest NKCC, whereas nonsmoking depressed subjects, control smokers, and control nonsmokers did not differ from one another (Jung & Irwin, 1999). As noted in a recent review (Irwin & Miller, 2007), the focus on depression has shifted to a complex interaction between depression and immune function. Depression has been associated with decreased immune function and increased production of proinflammatory cytokines, but this is likely to be a bidirectional relationship. For example, cytokine therapies for cancer and infectious diseases induce depression in a large percentage of patients, and cytokines are known to increase CRH (the primary cause of HPA axis activation), which is a risk factor for depression (Irwin & Miller, 2007). These findings may lead to models of understanding depression in the context of immune function. Coping Individual differences in appraisal and response to stressful situations have been evaluated through assessment of coping strategies. The positive or negative association of coping strategies with immune function appears to depend on stress levels, with active coping significantly related to more vigorous proliferative responses to PHA and Con A in individuals who report high stress levels but not in those who report low stress levels (Stowell, Kiecolt-Glaser, & Glaser, 2001). In contrast, low levels of avoidance coping, such as denial and mental disengagement, were associated with greater Con A proliferation under low-stress conditions, suggesting that in certain situations these strategies may be adaptive (Stowell et al., 2001). Generally, taking an active approach to dealing with stress results in better immune function, and repression and avoidance are associated with poorer immune function. For example, reactivation of latent EBV in healthy college students was associated with a repressive personality style and a tendency to not disclose emotion on a laboratory task (Esterling, Antoni, Kumar, & Schneiderman, 1990) and to higher levels of defensiveness (Esterling, Antoni, Kumar, & Schneiderman, 1993). Greater denial in gay men awaiting notification of HIV seronegative status was associated with less impairment in PHA response at baseline (Antoni et al., 1990). In partners of bone marrow transplant patients, escape-avoidance coping

was the strongest and most consistent variable associated with changes indicative of poorer immune function, especially during the anticipatory period prior to the initiation of the transplant (Futterman, Wellisch, Zighelboim, LunaRaines, & Weiner, 1996). Finally, in military personnel preparing for a foreign mission, higher levels of avoidance coping correlated with lower lymphocyte concentrations, whereas approach strategies were not correlated with immune measures (Ozura & Ihan, 2010). Coping has also been implicated in explaining individual differences in disease progression, particularly in HIV, where finding meaning and use of problem-based coping strategies are associated with better outcomes and repression/ denial strategies with poorer outcomes (for review, see Temoshok, Wald, Synowski, & Garzino-Demo, 2008). Disease Progression Keeping immune function within the proper range of activity for homeostasis is important for good health. Suppressed immune function can lead to cancer or disease, and unregulated inflammation can lead to other problems, such as autoimmunity and inflammatory diseases (Tracey, 2002). The optimal balancing point varies across individuals and disease conditions. Two cases in which psychological factors are known to influence disease progression are cancer and HIV. Cancer Findings related to cancer progression are more consistent and convincing in animal models than in humans because of the greater control provided by laboratory conditions. In a chronic stress paradigm in which mice underwent 3 weeks of restraint stress during repeated and prolonged exposure to UVB radiation, these mice were more susceptible to and less likely to have regression of squamous cell carcinomas (SCC) than nonstressed mice (Saul et al., 2005). Furthermore, chronically stressed animals had lower T helper cells infiltrating tumor tissue samples and had suppressed Th-1 cytokine IFN-γ production, which is important for antitumor immunity (Saul et al., 2005). On the other hand, mice that experienced acute episodes of stress had greater resistance to SCC and had enhanced Th-1 cytokine production as well as increased T cell infiltration into skin lesion sites (Dhabhar et al., 2010). Thus, although chronic stress may impair resistance to certain types of cancer, it is possible that acute stress may confer some protection. Although stress in general is typically viewed as bad for health, there may be some conditions in which it is beneficial and thus

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

may be incorporated into future treatments for cancer or other diseases. In humans, the association of psychosocial factors and cancer remains controversial due to conflicting study outcomes. Some prospective studies have found greater cancer-related mortality in depressed individuals (Persky, Kempthorne-Rawson, & Shekelle, 1987; Shekelle et al., 1981); other studies have not found this relationship (Kaplan & Reynolds, 1988; Zonderman, Costa, & McCrae, 1989). The strongest psychological predictors related to tumor progression include a low level of social support, hopelessness, and repression of negative emotions (for review, see Garssen & Goodkin, 1999; KiecoltGlaser & Glaser, 1999). At present, the role of stress and natural killer function in the initiation and progression of cancer in humans is “still a promissory note” because of the inherent challenges of knowing when the tumor began (Ben-Eliyahu, Page, & Schleifer, 2007, p. 881), making it difficult to tie the cancer to specific psychological changes. HIV Discovering psychosocial factors associated with immunity would be particularly relevant in the case of HIV, which infects CD4+ T helper cells. As T cell counts decline, persons with HIV are more susceptible to other opportunistic infections. As with cancer diagnosis, HIV diagnosis may add to existing stress levels. Indeed, studies have targeted how individuals cope with diagnosis of HIV in attempting to explain variations in progression of the disease. More rapid disease progression has been associated with greater concealment of homosexual identity (Cole, Kemeny, Taylor, Visscher, & Fahey, 1996), high realistic acceptance and negative expectations about future health (Reed, Kemeny, Taylor, Wang, & Visscher, 1994), attribution of negative events to the self (Segerstrom, Taylor, Kemeny, Reed, & Visscher, 1996), a passive coping style (Goodkin, Fuchs, Feaster, Leeka, & Rishel, 1992), and denial of diagnosis in seropositive gay men (Ironson et al., 1994). Alternatively, finding positive meaning in the loss of a close friend or partner was associated with a less rapid decline in levels of CD4+ cells over 3 years and lower rates of AIDS-related mortality 9 years later in HIV-seropositive men (Bower, Kemeny, Taylor, & Fahey, 1998). In summary, immune function may be altered in different directions by acute and chronic stress, but these changes depend on affective, cognitive, and behavioral differences in appraisal and coping responses that may lead to differential progression of diseases such as cancer

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and HIV. Up to this point in the chapter, we have focused primarily on studies of individuals. We now turn to the broader context of social relationships and how they relate to PNI.

SOCIAL RELATIONSHIPS AND PSYCHONEUROIMMUNOLOGY Social relationships have a robust and remarkable influence on our health (Berkman, Glass, Brissette, & Seeman, 2000; Uchino, Cacioppo, & Kiecolt-Glaser, 1996). A recent meta-analysis of 148 epidemiological studies demonstrated that higher social integration (higher number of social relationships, stronger social ties, and participation in social activities) is associated with a 50% better chance of survival independent of age, physical health, and a number of other health behavior risk factors (HoltLunstad, Smith, & Layton, 2010). This meta-analysis provides convincing support for House, Landis, and Umberson’s (1988) view that social relationships’ influence on health rivals that of other established risk factors, such as cigarette smoking, alcohol use, blood pressure, cholesterol, obesity, and exercise. Social relationships are a double-edged sword. The positive qualities of social relationships (e.g., positive social support, positive affect, relationship satisfaction) may protect against disease susceptibility and progression by promoting immune competence. In contrast, the negative qualities of social relationships (e.g., conflict, social constraint, network burden) may act as stressors or exacerbate the effects of stress, resulting in compromised immune function. Generally, social relationships have both direct (main effect) and indirect (stress-buffering) effects on disease processes and outcomes (Cohen, 1988). In the main effects model, social relationships influence disease processes and outcomes in the absence of stress or disease vulnerability. In the stress-buffering model, social relationships are protective against the deleterious effects of stress or other disease vulnerabilities. There is evidence in the literature for both kinds of effects, and they are probably mediated by cognitive, affective, behavioral, and physiological pathways (Kiecolt-Glaser & Newton, 2001; Slatcher, 2010; Uchino, Uno, & Holt-Lunstad, 1999) and moderated by age, gender, and other factors (Kiecolt-Glaser & Newton, 2001). We focus on four different conceptualizations of social relationships: (1) social integration, (2) social support, (3) loneliness (absence of social connectedness), and (4) marriage (for extensive reviews, see Graham, Christian, & Kiecolt-Glaser, 2007;

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Robles & Kane, in press; Uchino, Vaughn, Carlisle, & Birmingham, in press). Social Integration Social integration is defined by the number of family, friends, and community ties or the frequency of interaction with family and friends and participation in community activities (collectively referred to as a social network), or both. Social integration may benefit health through social support, social influence (e.g., positive influences on health behaviors), social engagement, and access to material goods (Berkman et al., 2000). Although social integration is linked to mortality, we still know very little about specific biological mechanisms through which this effect occurs. Inflammatory mechanisms have received significant attention as potential mediators of the link between social integration and mortality because of the recent evidence linking inflammation to a number of diseases, including cardiovascular disease (Miller, Chen & Cole, 2009). Recently, several large epidemiological studies demonstrated a moderately consistent inverse association between social integration and inflammatory markers (IL-6, CRP, fibrinogen), especially among elderly men (>60 years of age) (Ford, Loucks, & Berkman, 2006; Loucks, Berkman, Gruenewald, & Seeman, 2006; Loucks, Sullivan, et al., 2006; Sbarra, 2009). After controlling for age, health behaviors, and other standard controls, CRP remains the most consistent inflammatory marker associated with both broad measures of social integration (Ford et al., 2006; Loucks, Berkman, et al., 2006; for exception, see Loucks, Sullivan, et al., 2006) and marital status (Sbarra, 2009). These cross-sectional studies typically control for many important potential mediators, such as health behaviors (e.g., smoking, alcohol consumption, diet) and depression (Loucks, Sullivan, et al., 2006) but, in so doing, potentially mask other important associations. Interestingly, a consistent gender difference emerged among these studies: Social integration had an impact on markers of inflammation among men but not among women. Instead, the quality of relationships (rather than quantity, measured through social integration) is likely to be much more important for women than men (KiecoltGlaser & Newton, 2001). For example, women respond to conflict and behave in relationships (e.g., are more likely to take on a caregiving role) differently from men (Kiecolt-Glaser & Newton, 2001). Because measures of social integration do not take into account the quality of relationships in the social network, they are not able to

make important distinctions between positive and more problematic relationships. Social integration is also linked to infectious disease susceptibility. Cohen, Doyle, Skoner, Rabin, and Gwaltney (1997) demonstrated that greater network diversity (the number of different types of relationships identified in the social network) was associated with lower incidence of colds after being exposed to the common cold virus. Moreover, only a small portion of this relationship was explained through health behaviors. Additionally, in a healthy college student sample, number of friends was associated with greater antibody response to pneumococcal vaccine at a 4-week follow-up (Gallagher, Phillips, Ferraro, Drayson, & Carroll, 2008a), indicating better disease protection. However, social integration is not universally beneficial. During stressful times, social integration can be detrimental to health (Delongis, Folkman, & Lazarus, 1988; Hamrick, Cohen, & Rodriguez, 2002; Segerstrom, 2008; Turner-Cobb & Steptoe, 1996). Explanations for this effect include greater contact with infected individuals, increased negative affect, and energy trade-offs. Stress increases vulnerability to disease, especially chronic stress (e.g., Cohen et al., 1998), and large diverse social networks increase contact with potentially infected persons (Hamrick et al., 2002). For example, in a prospective, naturalistic study, Hamrick and colleagues (2002) found that college students with greater network diversity and higher levels of negative life events experienced the most clinically verified upper respiratory infections, while those with greater network diversity and lower levels of negative life events experienced the fewest. While it is possible that becoming sick leads to changes in the social network, exacerbating stress and creating more vulnerability to disease, the prospective design of the study makes this explanation less likely. Moreover, students under stress from their first year of law school with larger social networks had smaller delayed-type hypersensitivity skin responses across five time points over a 6-month period (Segerstrom, 2008), and this effect was not mediated by negative affect typically associated with relationship quality decline and life stress. As an alternative to the negative affect explanation, Segerstrom (2008) hypothesized that immune function might be compromised to devote energy to maintaining important social relationships, and this pressure grows with larger social networks. Social Support Perceived social support assesses the belief that others are willing and able to provide support (emotional support,

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

comfort, advice, tangible aid, etc.), should a need arise. Recently, in a large epidemiological study, greater perceptions of available social support were associated with lower CRP (but not IL-6 or fibrinogen), and this association was stronger for men than women, mirroring the findings of social integration (Mezuk, Diez Roux, & Seeman, 2010). Additionally, perceptions of available social support in an observational study were associated with lower stimulated levels of the inflammatory chemokine IL-8 but not TNF-α or IL-6 for both men and women (Marsland, Sathanoori, Muldoon, & Manuck, 2007). In contrast, in a sample of older adults, no relationship between perceptions of support and CRP was found (McDade, Hawkley, & Cacioppo, 2006). Therefore, similar to the social integration and inflammation studies, the findings for perceptions of social support and inflammation are mixed. In terms of disease susceptibility, researchers have examined the association between perceived social support and antibody responses to vaccines in healthy young adults (Gallagher, Phillips, Ferraro, Drayson, & Carroll, 2008a; Phillips, Burns, Carroll, Ring, & Drayson, 2005), in elderly nursing home residents (Moynihan et al., 2004), and under conditions of acute and chronic stress (Glaser et al., 1992, 2000). In general, perceptions of support have positive effects on antibody responses, independent from perceived stress. For example, greater perceived social support is associated with larger antibody response to the pneumococcal vaccine (Gallagher, Phillips, Ferraro, Drayson, & Carroll, 2008b), and those reporting higher perceived social support were more likely to show a fourfold increase in antibody titers to a component of influenza vaccine (Phillips et al., 2005). Perceived stress (e.g., negative life events) and perceptions of support appear to influence different types/strains of viruses, but the reasons remain unclear. There has been some recent speculation that certain types of viruses (e.g., viruses that mount a thymus-dependent versus thymus-independent immune response) and the individual’s history of exposure might influence susceptibility to psychosocial factors (e.g., Gallagher et al., 2008a; Miller et al., 2004), but more research is needed in this area to test these predictions. The latter findings addressed the main effects of perceptions of social support, but traditionally social support is thought to operate through stress-buffering processes (Cohen, 2004). Indeed, there is evidence for this pathway as well (Kang, Coe, Karaszewski, & McCarthy, 1998; Mezuk et. al., 2010). For example, greater social support was associated with lower levels of serum IgG but only for people under high job strain (Theorell, Orth-Gomer,

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& Eneroth, 1990). Furthermore, among predominantly stressed samples (e.g., medical students, spouses of cancer and dementia patients), greater social support is also associated with stronger antibody response to the hepatitis B vaccine (Glaser et al., 1992), stronger NKCC and proliferative response to mitogens (Baron, Cutrona, Hicklin, Russell, & Lubaroff, 1990), and stronger NKCC response to cytokine stimulation (Esterling, KiecoltGlaser, et al., 1994).

Perceptions of Loneliness As mentioned previously, lack of social integration or social connectedness is a serious risk factor for morbidity and mortality. Loneliness refers to the subjective perception of feeling isolated, disconnected, or lacking social relationships and is typically independent of objective measures of social connection (Hawkley & Cacioppo, 2010; Pressman et al., 2005; Steptoe, Owen, Kunz-Ebrecht, & Brydon, 2004). Although loneliness was not associated with CRP in a community sample (McDade et al., 2006), several other studies provide evidence for the association between perceptions of loneliness and poorer immune responses. In a cutting-edge social genomics study using bioinformatics, Cole and colleagues (2007) found evidence of underexpression of glucocorticoid responsive genes and overexpression of proinflammatory genes attributed to increased NF-kB transcription factor activity in immune cells from adults reporting high levels of loneliness. In other studies, loneliness predicted smaller NKCC and larger fibrinogin responses following a stress task (Steptoe et al., 2004) and higher antibody titers to the latent EBV and herpes simplex virus (indicative of less immune control of the viruses) (Kiecolt-Glaser et al., 1988). Finally, perceptions of loneliness in first-year college students were associated with smaller antibody responses to one component of the influenza vaccine, and this effect was partially mediated by perceptions of stress (Pressman et al., 2005). One possible pathway through which loneliness influences immune functioning is through increased perceptions of stress and stress reactivity. Moreover, interacting with close and comforting others (Coan, Schafer, & Davidson, 2006; Eisenberger, Taylor, Gable, Hilmert, & Lieberman, 2007) or being around friendly others (Schnall, Harber, Stefanucci, & Proffitt, 2008) attenuates perceptions of threat. Interestingly, social network size buffers against some of the detrimental effects of perceptions of loneliness (Pressman et al., 2005).

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Marital Quality and Interaction Arguably, the most important close personal relationship is the marital relationship. Although healthy marital relationships afford health benefits, conflict and stress in the marital relationship are associated with health risks (Kiecolt-Glaser & Newton, 2001). The first initial studies of marital interaction indicated that hostile behaviors exhibited during a conflict interaction, especially among men high in hostility, were associated with greater shortterm increases in NKCC (Kiecolt-Glaser et al., 1993; Miller et al., 1999), which is probably due to increased circulation of natural killer cells in the bloodstream (Dopp et al., 2000). More recent studies of marital interaction have turned toward examining systemic and localized inflammation (Kiecolt-Glaser et al., 2005). Kiecolt-Glaser and colleagues (2005) brought married couples to the lab to participate in both a conflict discussion and a support discussion, where one spouse describes an aspect about himself or herself that he or she would like to change on separate days. During these discussions, investigators measured both systemic measures of inflammation through peripheral blood and localized inflammation at the site of a blister wound. Although hostile or negative behaviors among couples were associated with increases in systemic inflammation (IL-6, TNF-α) in the conflict compared to the support discussion, these behaviors were associated with decreases in localized inflammation at the site of the blister wound. Negative marital interactions, especially among couples who are prone to hostile behavior, can contribute to both elevated systemic levels of inflammation and delayed localized wound healing. Subsequent analyses of this sample revealed that the language couples used during the conflict discussion, specifically, words reflecting how participants were thinking, reasoning, and communicating, was related to lower circulating IL-6 and TNF-α (Graham et al., 2009). Furthermore, an interesting effect emerged in that wives’ language was related to husbands’ circulating IL-6 levels. Finally, negative marital interactions may be even more detrimental to individuals already vulnerable to increased inflammation. For example, greater marital stress was associated with greater plasma levels of CRP in more obese women but not in less obese women (Shen et al., 2010). In terms of adaptive immunity, lower marital quality was related to a lower CD4+/CD8+ cell ratio in men (Kiecolt-Glaser et al., 1988), poorer adaptive immunity on several functional measures including poorer

lymphocyte proliferation in women (Kiecolt-Glaser et al., 1987), poorer cellular immune control of the latent EBV in both men and women (Kiecolt-Glaser et al., 1987, 1988), and lower antibody titers to a component of the influenza vaccine (Phillips et al., 2006). Furthermore, marital interaction studies revealed that negative behaviors during a conflict discussion were associated with poorer cellular immune control of EBV and other negative immunological changes over a 24-hour period. This pattern was similar for both newlywed couples (Kiecolt-Glaser et al., 1993), older couples who had been married an average of 42 years (Kiecolt-Glaser et al., 1997), and women in distressed marriages (Mayne, O’Leary, McCrady, Contrada, & Labouvie, 1997). Taken together, these findings demonstrate that marital distress and discord is associated with dysregulation of both innate (e.g., inflammation) and adaptive (e.g., susceptibility to disease) immunity.

Social Relationships in Disease Progression Studies of clinical disease progression and social relationships are important in PNI research because they are directly relevant to clinical health outcomes. The studies assessing the effects of social relationships on HIV progression have produced mixed results. While some studies have demonstrated that high levels of perceived support, social participation, and social integration along with low levels of loneliness predict slower disease progression (e.g., Leserman et al., 2002; Patterson et al., 1996; Persson, Gulberg, Hanson, Moestrup, & Ostergren, 1994), others have not found an association between social factors and disease progression (e.g., Perry, Fishman, Jacobsberg, & Frances, 1992). One study found that low baseline loneliness predicted more rapid decline of CD4+ levels (Miller, Kemeny, Taylor, Cole, & Visscher, 1997). There is some evidence to suggest that supportive ties are beneficial in the late stages and less so in the early stages of HIV (Ironson & Hayward, 2008; Miller & Cole, 1998), but this is preliminary. Furthermore, the benefits of positive social ties may depend on the population affected by HIV (Miller & Cole, 1998). Social relationships have also been linked to immune function in cancer patients. For example, in a sample of cancer patients, greater social network size was protective against the negative effects of prior life stress on DTH response (Turner-Cobb et al., 2004). Furthermore, seeking instrumental social support (e.g., advice, tangible aid) and attachment social support (e.g., having close relationships, intimacy) was associated with lower IL-6 in

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

ovarian cancer patients (Costanzo et al., 2005; Lutgendorf, Anderson, Sorosky, Buller, & Lubaroff, 2000), and the quality of social support is associated with increased NKCC in breast cancer patients (Levy et al., 1990). In exciting recent work, Lutgendorf and colleagues (2009) found an upregulation of NF-kB transcription factor activity in the tumor microenvironment of ovarian cancer patients with depression and low social support that may accelerate disease progression. In PNI research, social integration and marital status are often used as proxies for social support. However, social ties and social participation can provide more positive experiences than just social support and can also be sources of interpersonal distress (Berkman et al., 2000). For example, using a daily diary methodology, Zautra and colleagues (1998) found that positive spousal interactions and less spousal criticism buffered increases in disease activity among rheumatoid arthritis patients during a week of significant interpersonal stress. However, social support was not related to disease activity. Furthermore, greater daily interpersonal distress was associated with both increased levels of plasma CRP (Fuligni et al., 2009) and LPS-stimulated IL-6 (Davis et al., 2008; Miller, Rohleder, & Cole, 2009). It will be important for future research to move beyond measuring perceived social support and perceptions of loneliness, which are closely tied to personality variables and may confound interpersonal experience with personality. For progress in our understanding of how and when social relationships influence immune functioning, researchers need to explore in greater detail actual interpersonal experiences utilizing field, laboratory, and daily dairy methodologies. Our brief review indicates that social relationships can and do have a broad influence on immune functioning, in terms of both disease susceptibility (e.g., viral challenge and vaccine studies) and progression (e.g., HIV, cancer, and other inflammatory related diseases). This is striking, given the vast measures of social relationships and of immune functioning. One of the next steps in understanding these relationships will be to assess physiological, psychological, and behavioral mediators. Although the HPA axis and the sympathetic nervous system are thought to mediate psychosocial experiences and immune functioning, to date, there is not much evidence for this mediation in literature (e.g., Pressman et al., 2005). However, it is possible that the lack of mediation is due to measurement issues. Still, the development of sound interventions depends on the proper assessment of these mediators (Cohen & Janicki-Devert, 2009).

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PSYCHOLOGICAL INTERVENTIONS Intervention studies provide two important contributions to understanding psychological influences on the immune system: (1) critical evidence of whether psychological factors like stress, depression, coping, and social support have causal effects on immunity; and (2) insight into the health-related implications for clinically relevant outcomes and conditions, most notably chronic diseases. The psychological interventions studied in the literature include classical conditioning, complementary and alternative approaches, and emotional disclosure. We first review studies in each of these intervention categories, with primary emphasis on immune changes in healthy populations, and then discuss more specifically studies of psychological interventions within two specific illness populations: cancer and HIV. Classical Conditioning The first demonstrations of brain-immune communication came from animal studies of classically conditioned immunosuppression (Ader & Cohen, 1975). These studies led to testing whether classically conditioned immune suppression could be utilized in human patient populations to reduce symptoms and even medication dosage. In classical conditioning, repeated pairings of a conditioned stimulus (CS) and an unconditioned stimulus (UCS) eventually led to the CS eliciting a conditioned response (CR). Several studies showed that drug-induced immune suppression could be classically conditioned to stimuli in the hospital environment (Bovbjerg et al., 1990) or to a taste and smell (Olness & Ader, 1992). In the latter, a case study in a pediatric patient with lupus, pairing cyclophosphamide-induced immunosuppression with a CS through monthly conditioning trials resulted in clinical improvement and reduced medication dosage, presumably because the effects of the medication could be elicited by the CS alone. Finally, several studies showed that epinephrine-induced increases in NK cytotoxicity could be reliably classically conditioned (BuskeKirschbaum, Kirschbaum, Stierle, Jabaij, & Hellhammer, 1994; Buske-Kirschbaum, Kirschbaum, Stierle, Lehnert, & Hellhammer, 1992). Emotional Disclosure Several lines of research in the psychology of emotion, coping, and health suggest that inhibiting emotional expression and discussion of negative events may

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have deleterious mental and physical health consequences (reviewed in Austenfeld & Stanton, 2004). Emotional disclosure interventions, which typically involve practicing written disclosure of negative, often traumatic life events, have been related to alterations in immune function over weeks to months (Miller & Cohen, 2001). Specifically, reliable decreases in EBV antibody titers (Esterling, Antoni, et al., 1994; Lutgendorf, Antoni, Kumar, & Schneiderman, 1994) and, counterintuitively, lower numbers of circulating CD4 T-cells (Booth, Petrie, & Pennebaker, 1997) have been observed in response to emotional disclosure interventions, although these changes have been observed in only a small number of studies. Individual studies have demonstrated increased lymphocyte proliferation to PHA and fewer health center visits (Pennebaker, Kiecolt-Glaser, & Glaser, 1988) and higher antibody titers to a hepatitis B vaccination (Petrie, Booth, Pennebaker, Davison, & Thomas, 1995). Such changes in immune function may have clinical implications; 4 months following a written emotional disclosure intervention, asthma patients experienced improved lung function, and rheumatoid arthritis patients had clinically significant improvements in overall disease activity, compared to controls (Smyth, Stone, Hurewitz, & Kaell, 1999). In another randomized trial, emotional disclosure was related to faster punch biopsy wound healing (Weinman, Ebrecht, Scott, Walburn, & Dyson, 2008). Complementary and Alternative Treatments Complementary and alternative medicine (CAM) is an increasingly popular adjunctive form of treatment for both healthy and ill populations. Such treatments comprise systems, practices, and products that are not considered part of conventional medicine. In the context of psychological interventions, the most widely studied group of CAM treatments are mind–body practices, including relaxation, meditation, yoga, and Tai Chi, among others (National Center for Complementary and Alternative Medicine, 2010). One of the most frequently used techniques in PNI intervention studies involves techniques that draw on the relaxation response; these techniques include focused attention (on the body, breath, or a mantra) and deep, diaphragmatic breathing (Benson, Beary, & Carol, 1974). Individual studies provide some evidence for the effects of such techniques on measures of immune function. For example, older adults housed in independent living facilities showed significant increases in NKCC and better control of latent

HSV following 1 month of progressive muscle relaxation training with guided imagery, compared to social contact and no intervention, which were maintained at 1 month follow-up (Kiecolt-Glaser et al., 1985). However, the picture is more equivocal when considering the overall literature (Miller & Cohen, 2001), with generally small but unreliable effects of relaxation interventions on various functional immune measures. (One exception is moderate and reliable enhancing effects for salivary IgA.) Hypnosis studies have typically evaluated whether individuals can modify their immune responses through hypnotic suggestion and have primarily focused on measuring immediate or delayed hypersensitivity in the context of the double arm technique. In these studies, an antigen is injected into both arms of the participant and hypnotic suggestions are made about the immune response (size of the wheal, redness) in one arm over the other arm. The evidence to date suggests small to moderate-size effects for immediate-type hypersensitivity responses, but no reliable effects for other functional immune measures (Miller & Cohen, 2001). Beyond individual techniques (e.g., deep breathing), several multifaceted CAM interventions have been developed and tested in the context of PNI research. These interventions combine relaxation with movement (e.g., Tai Chi), specific postures (e.g., yoga), or behaviors (e.g., meditation practices). In a randomized, controlled trial of Tai Chi, older adults who participated in a Tai Chi intervention for 16 weeks and were subsequently vaccinated against varicella zoster virus (the virus that causes shingles) showed higher cell-mediated immune responses against the virus compared to a health education control group (Irwin, Olmstead, & Oxman, 2007). Moreover, Tai Chi actually enhanced immune responses against varicella zoster above immune responses with vaccine alone. Individuals considered experts in yoga practice (practicing regularly for the past 2 years) showed lower levels of circulating IL-6, were less likely to have detectable CRP levels, and produced less IL-6 in response to stimulation with LPS (Kiecolt-Glaser et al., 2010). Finally, meditation practice has been widely used in PNI studies, particularly in chronic disease populations. Although we review those studies in the sections that follow, we should note that meditation practice, such as compassion meditation (Pace et al., 2009) or mindfulness meditation (Davidson et al., 2003), may also have beneficial effects on immunity in healthy populations. For example, healthy adults randomized to 6 weeks of training in compassion meditation showed lower acute stress-induced increase in

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

IL-6 compared to adults randomized to a health education control group (Pace et al., 2009). Psychological Interventions in Chronic Disease In the context of PNI, two chronic illnesses have received the most attention with regard to psychological intervention research: cancer and HIV. Although there are significant differences in etiology, course, and treatment between the two conditions, the approach to psychological interventions has been very similar. In the past decade, comprehensive cognitive-behavioral stress management interventions have been studied in large randomized trials for both conditions, and recent years have seen significant interest and study in complementary and alternative treatments, most notably mindfulness meditation. While these interventions primarily focus on improving patients’ ability to mentally cope with the illness, in addition to potential immune effects, newer research now examines how psychological interventions may be used to improve quality of life by reducing disease-related morbidity, including pain, fatigue, and sleep loss. Cancer Most studies of psychological interventions in cancer have focused on patients with breast cancer, including the best designed, large randomized controlled trials. Although early studies generally provided weak support for beneficial immunological effects of psychological interventions, including biofeedback training and cognitive therapy (Davis, 1986), comprehensive stress management (Schedlowski, Jung, Schimanski, Tewes, & Schmoll, 1994), and multiple relaxation techniques (Gruber et al., 1993), these studies suffered from methodological limitations, such as small sample size and inadequate control groups (reviewed in Luecken & Compas, 2002). More recent work in larger samples generally suggests that comprehensive stress management interventions that incorporate cognitive-behavioral stress management (cognitive restructuring, social support, coping, and relaxation interventions) and, in some cases, health education (e.g., diet and exercise) can result in benefits for cellular immunity. For example, cognitive-behavioral stress management interventions administered less than 2 months after surgery were related to increased lymphocyte proliferation to anti CD-3 stimulation (Gruber et al., 1993), and a 24-week comprehensive psychosocial intervention increased lymphocyte proliferation to Con A (Andersen et al., 2004). Finally, an 8-week cognitive-behavioral

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intervention that targeted insomnia in breast cancer patients resulted in greater stimulated production of IFN-gamma immediately postintervention and at 12-month follow-up (Savard, Simard, Ivers, & Morin, 2005). The last study is an excellent example of a symptom-focused intervention (sleep disturbance) for breast cancer patients that may also have secondary health benefits. In addition, increased interest in complementary and alternative treatments has ushered in studies of mindfulness meditation and immunity. For example, in a single-arm trial, participation in an 8-week mindfulness-based stress reduction program was related to decreased stimulated IFN-gamma production postintervention to 12 months postintervention (Carlson, Speca, Faris, & Patel, 2007). The specific psychological mechanisms that explain the immune effects are unknown, but research on the process of change in the trial by Andersen and colleagues suggests that experiencing greater connection with members of the group was related to improved adjustment. Furthermore, the greater use of stress conceptualization, relaxation practice, strategies to improve patient–provider communication, and exercise were related to physical signs and symptoms (Andersen, Shelby, & Golden-Kreutz, 2007). Two themes emerge from these studies (McGregor & Antoni, 2009): First, in some cases, patients who experienced larger psychological improvements such as reduction in distress showed greater physiological improvements; second, although positive changes emerged for cellular immune measures, the relevance of cellular immunity for breast cancer progression and prognosis is unclear. Moreover, research in this area has been criticized on methodological grounds, including concerns about a lack of significant effects in unadjusted analyses, lack of a priori hypotheses regarding immune measures, and, as mentioned previously, concerns about the limited role of the immune system in certain types of cancers, such as breast cancer (Coyne & Tennen, 2010). Thus, current work is now focusing on immune mechanisms, particularly innate immune inflammatory responses and their regulation by the neuroendocrine system, that have direct relevance to activity in the tumor microenvironment and morbidity caused by the cancer and its treatment, including pain, fatigue, and sleep disturbance (Antoni et al., 2006; Miller, Ancoli-Israel, Bower, Capuron, & Irwin, 2008). A positive consequence of the focus on the tumor microenvironment is research that fills two gaps in the literature: identifying specific immune markers that are relevant to tumor progression and that are responsive to psychosocial factors.

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HIV Compared to cancer, HIV is an excellent system for examining immune outcomes in psychological intervention studies because the immune system is the target of the disease, and immune measures, most notably CD4+ T cell counts and viral load, are direct markers of disease progression and prognosis. Over a dozen randomized controlled trials have been conducted in HIV-positive patients, with cognitive-behavioral stress management the primary intervention studied, followed by relaxation and meditation, and emotional disclosure (reviewed in Carrico & Antoni, 2008). The cognitive-behavioral stress management interventions were group based and took place over several months, similar to those described in the “Cancer” section. These studies were heterogeneous in terms of patient population (e.g., gay men only versus men and women) and stage of disease during enrollment (e.g., around HIV diagnosis; during the latent, asymptomatic phase of the disease; coping with bereavement). The overall theme across these studies is similar to one of the themes for breast cancer interventions: Interventions that do not result in psychological improvement do not show positive changes in immune function (Carrico & Antoni, 2008). For example, among mildly symptomatic gay men, participation in the cognitive-behavioral intervention, coupled with medication adherence training, was related to decreased HIV viral load in patients with detectable virus at baseline, which was mediated by changes in depressed mood (Carrico et al., 2006). Studies that showed negative effects on immune function did not find improvements in psychological adjustment, did not measure psychological adjustment, or suffered from design limitations (small sample size, lack of generalizability to current treatment regimens) (Carrico & Antoni, 2008). The overall literature on psychological interventions in HIV more broadly is characterized by small sample sizes, which may explain why the existing data are equivocal regarding effects on CD4+ counts; some studies show no effect while others show increased CD4+ counts in response to psychological interventions. Beyond expanding current work on comprehensive stress management interventions into larger samples, complementary and alternative treatments are a budding avenue for psychological interventions. For example, a recent randomized controlled trial showed that participating in an 8-week mindfulness-based stress reduction program buffered declines in CD4+ T-cells from baseline to

postintervention, which was partially explained by treatment adherence (Creswell, Myers, Cole, & Irwin, 2009). Summary While a number of psychological interventions have been tested in both healthy individuals and medically ill populations, the literature to date is still relatively small compared to the larger literature on medical interventions. Most important, large randomized controlled trials that are considered the gold standard for testing whether treatments work are in the minority of PNI studies of psychological intervention. As a result, in a quantitative review of psychological interventions and immune function of studies through 1999, the authors concluded that while some studies certainly show that psychological interventions “can modulate certain features of the immune response, their findings are considerably more narrow than might have been anticipated” (Miller & Cohen, 2001, p. 56). More recent, well-designed trials have emerged since then with promising results, although the picture remains largely unchanged. Beyond increasing sample size and improving the design of intervention studies, current work in chronic disease populations suggests a way forward: testing the effects of psychological interventions on immune mechanisms that are relevant to disease progression, such as CD4+ counts or viral load in HIV, or symptoms related to disease and its treatment, such as inflammation and pain, fatigue, and sleep and mood disturbances.

CONCLUSION Basic and applied PNI research studies have provided an encouraging foundation for characterizing the bidirectional links between psychosocial and immunological factors. The current knowledge of PNI with respect to individual psychological differences, emotions, coping strategies, and interpersonal relationships has already had a significant impact on understanding the contribution that the psychosocial context has on immune function, health, and disease. Further understanding of the molecular and cellular levels of the bidirectional relationships between brain, behavior, and immunity will lead to increased targets available for intervention strategies. In addition, the next wave of PNI research will expand our knowledge of psychosocial factors and their role in the

Psychoneuroimmunology: Mechanisms, Individual Differences, and Interventions

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Uchino, B. N., Uno, D., & Holt-Lunstad, J. (1999). Social support, physiological processes and health. Current Directions in Psychological Science, 8, 145–148. Uchino, B. D., Vaughn, A. A., Carlisle, M., & Birmingham, W. (in press). Social support and immunity. In S. Segerstrom (Ed.), Oxford handbook of psychoneuroimmunology. New York, NY: Oxford University Press. Valdimarsdottir, H. B., & Bovbjerg, D. H. (1997). Positive and negative mood: Association with natural killer cell activity. Psychology & Health, 12 (3), 319–327. doi: 10.1080/08870449708406710 Vedhara, K., Cox, N. K., Wilcock, G. K., Perks, P., Hunt, M., Anderson, S., . . . Shanks, N. M. (1999). Chronic stress in elderly carers of dementia patients and antibody response to influenza vaccination. Lancet, 353 (9153), 627–631. Viswanathan, K., Daugherty, C., & Dhabhar, F. S. (2005). Stress as an endogenous adjuvant: Augmentation of the immunization phase of cell-mediated immunity. International Immunology, 17 (8), 1059–1069. doi:10.1093/intimm/dxh286 Von Ah, D., Kang, D. H., & Carpenter, J. S. (2007). Stress, optimism, and social support: Impact on immune responses in breast cancer. Research in Nursing & Health, 30 (1), 72–83. Watson, D., & Pennebaker, J. W. (1989). Health complaints, stress, and distress: Exploring the central role of negative affectivity. Psychological Review, 96 (2), 234–254. Wayne, S. J., Rhyne, R. L., Garry, P. J., & Goodwin, J. S. (1990). Cell-mediated immunity as a predictor of morbidity and mortality in subjects over 60. Journal of Gerontology, 45 (2), M45–48. Weber, C., Thayer, J., Rudat, M., Wirtz, P., Zimmermann-Viehoff, F., Thomas, A., . . . Deter, H. (2010). Low vagal tone is associated with impaired post stress recovery of cardiovascular, endocrine, and immune markers. European Journal of Applied Physiology, 109 (2), 201–211. doi:10.1007/s00421-009-1341-x Weinman, J., Ebrecht, M., Scott, S., Walburn, J., & Dyson, M. (2008). Enhanced wound healing after emotional disclosure intervention. British Journal of Health Psychology, 13, 95–102. Zautra, A. J., Hoffman, J. M., Matt, K. S., Yocum, D., Potter, P. T., & Castro, W. L. (1998). An examination of individual differences in the relationship between interpersonal stress and disease activity among women with rheumatoid arthritis. Arthritis Care and Research, 11, 271–279. Zonderman, A. B., Costa, P. T., Jr., & McCrae, R. R. (1989). Depression as a risk for cancer morbidity and mortality in a nationally representative sample. Journal of the American Medical Association, 262 (9), 1191–1195.

PART III

Diseases and Disorders

CHAPTER 5

Asthma KAREN B. SCHMALING

EPIDEMIOLOGY AND HEALTH-CARE COSTS RELATED TO ASTHMA 106 EVIDENCE BASIS FOR PSYCHOLOGICAL THEORIES APPLIED TO MECHANISMS INVOLVED IN ASTHMA 107 PSYCHOLOGICAL FACTORS ASSOCIATED WITH ASTHMA 110 MEDICAL TREATMENTS FOR ASTHMA 113

ADHERENCE 114 PSYCHOSOCIAL FACTORS ASSOCIATED WITH MEDICAL TREATMENTS AND OUTCOMES 115 PSYCHOLOGICAL INTERVENTIONS FOR ASTHMA 116 CONCLUSIONS, UNANSWERED QUESTIONS, AND FUTURE DIRECTIONS 120 REFERENCES 120

This chapter reviews the application of psychological theories to the understanding of asthma, the effects of stress and mood states on asthma, and the prevalence of psychiatric disorders among persons with asthma and the effects of co-occurring psychiatric disorders and asthma on patient morbidity. The current asthma treatment guidelines are summarized, as are challenges for adherence and self-management, including an examination of the role of psychological variables in adherence and other outcomes. Behavioral and other psychological interventions are reviewed. Suggestions for future research directions are summarized. Asthma is a common condition characterized by underlying airway inflammation, airflow obstruction, and bronchial hyperresponsiveness to a variety of stimuli, ranging from allergens and other irritants to strong emotions (National Heart, Lung, and Blood Institute [NHLBI], 2007). These processes are usually reversed with treatment, but among some patients with asthma, airway inflammation modifies or remodels the airway structure over time and decreases reversibility. The role of inflammation in asthma has been recognized as crucial and has received increasing attention, as have the contributions of gene-by-environment interactions. The central roles of inflammation and the environment have implications for treatment and for pathways by which psychosocial and behavioral factors may affect asthma. Variable and recurring symptoms of cough, wheezing, shortness of breath,

and sensations of chest tightness are associated with an asthma exacerbation. An asthma attack may be characterized by hypercapnia (excessive carbon dioxide) and hypoxia (lack of oxygen), which may partially account for the high prevalence of anxiety disorders among persons with asthma, a phenomenon that is examined later in this chapter. The determination of asthma severity typology (intermittent versus persistent, which is discussed later in this chapter) is the basis for treatment selection. In addition, there has been increasing interest in identifying asthma phenotypes and the possibility of tailored treatment approaches based on phenotype (Centers for Disease Control [CDC], 2011). For example, asthma and allergies co-occur frequently; allergies are a common trigger for an asthma exacerbation. About 60% of persons with asthma are allergic (Ford, 1983); the development of asthma and allergies may occur early in childhood as a common outcome of immune system development (NHLBI, 2007). Some genetic predisposition is probably necessary to develop asthma, but not all persons who are predisposed will develop asthma; family stress seems to be implicated in its development in childhood (Mrazek, Klinnert, Mrazek, & Macey, 1991; Wright, Weiss, & Cohen, 1996), especially the presence of psychological problems in adult caregivers (Tibosch, Verhaak, & Merkus, 2011). Asthma is a condition worthy of the attention and efforts of behavioral scientists: Psychosocial variables may be implicated 105

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in the initiation, course (exacerbations versus quiescence), and outcomes (morbidity, mortality) of asthma; psychological interventions have a role in the treatment of asthma to enhance patients’ self-management skills.

EPIDEMIOLOGY AND HEALTH-CARE COSTS RELATED TO ASTHMA Approximately 8.2% of the U.S. population reported having asthma in 2009, about 25 million persons (CDC, 2011). Asthma is more prevalent among children in the United States (9.6%) than among adults (7.7%), and although most but not all asthma is identified in childhood, asthma does not resolve in puberty or adulthood for the majority of cases. Asthma is also more common among women (9.3%) than men (7.0%)—although the reverse is true among children (11.3% of boys versus 7.9% of girls), which suggests that asthma is initially recognized in adulthood relatively more frequently among women. The cause for gender differences in self-reported asthma is unknown; greater body mass (Dixon et al., 2010) and/or use of exogenous hormones (Troisi, Speizer, Willett, Trichopoulos, & Rosner, 1995) may contribute to higher rates of asthma among women. Inflammation and other pathogenic factors in asthma and its common comorbidities, such as depression and obesity, also are more common among women. Clough (2011) suggested, in the context of the hygiene hypothesis, that increased hygiene and decreased exposure to allergens may result in a more na¨ıve immune system, which is a risk factor for the development of asthma (Strachan, 1989), and gender socialization regarding standards of cleanliness may contribute to the female predominance of asthma. Asthma is more prevalent among the poor with household incomes below the federal poverty level (FPL) (11.6%) than among those at 100 to 200% of the FPL (8.5%) or over 200% (7.3%); it is more prevalent among those of non-Hispanic Black ethnicity/race (11.1%), compared to non-Hispanic Whites (8.1%) and Hispanics (6.3%) (CDC, 2011). Native Americans also have high asthma prevalence (11.6%) (Gorman & Chu, 2009). Asthma prevalence varies markedly among different Hispanic groups, with nearly one in four male children of Puerto Rican descent having asthma in 2006–2008 (Moorman, Zahran, Truman, & Molla, 2011). The impact of socioeconomics, health behavior, and environmental factors is substantial: Gorman and Chu (2009) estimated that after accounting for the variance in asthma symptoms explained by socioeconomic factors, African Americans

with asthma would have fewer symptoms than whites. Socially adverse (impoverished, stressful, and violent) and disadvantaged environments are significant risk factors for asthma (Williams, Sternthal, & Wright, 2009). Prevalence rates have been steadily increasing in recent decades (Eder, Ege, & von Mutius, 2006). The global prevalence of asthma, which was estimated to number 300 million people in 2006, has increased 50% in each of the last four decades (Braman, 2006). The age-adjusted death rate for asthma appears to have decreased since 1999; asthma deaths increase with age, with most deaths occurring in those over age 45, and are more likely among women than men and among Blacks than Whites (American Lung Association, 2011), although such figures based on reviews of death certificates may underestimate the actual mortality attributable to asthma (Hunt et al., 1993). The majority of asthma deaths are probably preventable, for example, due to delays in symptom recognition and/or seeking acute treatment. Of interest are the psychosocial factors that may contribute directly or indirectly to the increasing prevalence and mortality related to asthma. A conceptualization of asthma as having emotional and psychosocial components dates back to the early 20th century, when asthma was considered a prototypical psychosomatic disease (Groddeck, 1928). Developments in psychoneuroimmunology are contributing to an evolving appreciation for how biological and psychological systems interact to produce and maintain asthma. Asthma is costly. In 2007, U.S. asthma care totaled $56 billion in direct and indirect costs, including costs associated with premature death and time away from work because of asthma (CDC, 2011). In the United States, approximately 3 million days of work and 10.1 million days of school are lost each year due to asthma. The costs associated with nonadherence to asthma self-management have been estimated at $300 billion per year (Bender & Rand, 2004). (Psychosocial factors associated with adherence are addressed in a later section.) Persons who are adherent with their medication regimens may incur more direct costs in medications and scheduled outpatient office visits. By contrast, persons who are less adherent with their medication regimens may incur lower direct costs for medications and outpatient office visits but incur more costly unscheduled visits, such as urgent care or emergency room visits. The financial effects of optimal and nonoptimal behavioral self- management are issues worthy of further exploration (and a potential source of information that would motivate patients to be more adherent with self-management).

Asthma

EVIDENCE BASIS FOR PSYCHOLOGICAL THEORIES APPLIED TO MECHANISMS INVOLVED IN ASTHMA A number of psychological theories have been applied to various aspects of asthma in order to enhance our understanding of, and success in modifying, the condition. Operant conditioning, cognitive and perceptual processes, and some elements of psychoanalytic theory have received the most attention and are discussed in the section that follows. Classical conditioning and family systems models show promise for future examination of their applications to asthma processes and treatment. Classical and Operant Conditioning It would be possible for asthma to be a classically conditioned response if allergens and irritants that caused bronchoconstriction were repeatedly linked to a novel stimulus, thereby creating a conditioned stimulus. There are case studies in the literature that describe conditioned visual stimuli (Dekker & Groen, 1956) and inhaled stimuli (Dekker, Pelser, & Groen, 1957) that provoke asthma attacks in participants with asthma. Respiratory resistance has been classically conditioned in participants without asthma. For example, mental arithmetic, a task that can elicit increased respiratory resistance (although note that Lehrer, Hochron, et al., 1996, found mental arithmetic to decrease respiratory resistance), was preceded by the display of a specific color; increased respiratory resistance was demonstrated in response to the specific color (Miller & Kotses, 1995). When participants in this study were debriefed, 90% recalled correctly which color preceded the arithmetic, but only 17% guessed correctly that the purpose of the experiment was to examine changes in breathing in anticipation of performing mental arithmetic, suggesting that conditioning occurred without subjects’ awareness. Rietveld, van Beest, and Everaerd (2000) exposed participants with asthma to placebo, citric acid at levels that induced cough, or citric acid at 50% of coughinducing levels and manipulated expectancies: Some were led to believe the experiment was about asthma, others about evaluating flavors. Cough frequency was greater among participants who were told the experiment was about asthma than about evaluating flavors. Beyond the importance of expectancies (see later), because cough has a conditioned association with asthma, a focus on asthma may make cough more likely, and persons with asthma are more likely to label cough as indicative of asthma.

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These studies suggest that the unintended development of classically conditioned precipitants should be considered among persons with unexplained triggers for their asthma. In contrast to classical conditioning, operant conditioning has received little attention as a potentiating or maintenance mechanism for asthma. It is likely that consequences in patients’ environments shape patients’ self-management behavior (e.g., medication use), thereby exerting indirect effects on asthma. These processes await examination in future research. Cognitive and Perceptual Processes A model of cognitive processes in asthma would posit that perceptions, attitudes, and beliefs about asthma can affect symptom reports, self-management, and medical utilization. Several areas of research inform our understanding of cognitive and perceptual processes in asthma, including research on the effects of suggestion on pulmonary function and comparisons of perceived with objective measures of pulmonary function. Effects of Suggestion on Pulmonary Function The usual method for examining the effects of suggestion on pulmonary function is to create an expectation for bronchoconstriction by telling participants that they will inhale a substance that causes bronchoconstriction, when the actual substance is saline. Isenberg, Lehrer, and Hochron (1992a) provided a comprehensive review of this literature and found that 36% of participants demonstrated objective bronchoconstriction to suggestion (typically a 20% decrement in pulmonary function). An examination of participant characteristics potentially related to the likelihood of response to suggestion did not reveal clear patterns, although two of three studies reported women to be more responsive to suggestion than men. A subsequent study by this group (Isenberg, Lehrer, & Hochron, 1992b) found changes in perceived airflow but did not find changes in pulmonary function as a result of suggestion. Wechsler and colleagues (2011) found albuterol, placebo inhaler, and sham acupuncture but not control were associated with significant decreases in symptoms but not with change in pulmonary function. These results suggest placebo effects among some people with asthma or that inhaler use is classically conditioned to be associated with symptom improvement. Placebo effects are generally discussed in a unidimensional frame, that is, in the direction of improvement without active treatment. Future research with a balanced placebo design (Rohsenow & Marlatt, 1981), including manipulation of expectancies in

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both directions (also receiving a bronchodilator with an expectation of no improvement), would allow expectancies and physiological responses to be teased apart. Based on responses to the Creative Imagination Scale, 63% of suggestible patients with asthma demonstrated a significant decrease in pulmonary function in response to suggestion compared with 11% of suggestion-resistant patients with asthma (Leigh, MacQueen, Tougas, Hargreave, & Bienenstock, 2003). Put and colleagues (2004) found that high negative affectivity was associated with stronger symptom reports and perceptions congruent with suggestion (i.e., bronchoconstriction and/or bronchodilation after it was suggested), whereas low negative affectivity was associated with little variability in response to suggestion. These efforts to identify individual variables that predict who is likely to respond to suggestion could lead to cognitive-behavioral interventions to optimize patient functioning. Perceived Versus Objective Pulmonary Function Good self-management is crucial to optimal asthma care; self-management skills include adherence with medications, which may involve using quick-relief medications based on symptoms perceptions or awareness of possible exposure to triggers. From this perspective, patients’ perceptions are the foundations for optimal asthma control. But how ably can patients with asthma accurately perceive and report their respiratory status, and what characteristics are related to perceptual ability? The process of detection, perception, and response to objectively demonstrable changes in airflow varies by individual, akin to the experience of and response to pain. Studies have found statistically significant associations of modest clinical significance between pulmonary function and symptoms in 25% (Apter et al., 1997) to 40% of patients with asthma (Kendrick, Higgs, Whitfield, & Laszlo, 1993). Koinis-Mitchell and colleagues (2009) found that children’s perceptual accuracy was related to their attentional skills. The provision of standard values of Borg ratings of breathlessness at maximum methacholine doses by baseline lung function ranges is a good tool to help identify—at least in a laboratory setting—patients who may underperceive or overperceive (Wamboldt, Bihun, Szefler & Hewitt, 2000). A review by Rietveld (1998) that found poor correspondence between subjective symptom reports and objective pulmonary function suggested that symptom perception is largely attributable to mood. Similarly, Janssens, Verleden, De Peuter, Van Diest, and Van den Bergh (2009) concluded that mood, context, and expectancies are influential determinants of symptom

perception. Perceptual accuracy alone is insufficient for appropriate self-management. There are alarming reports of significant delays in seeking treatment, despite patients’ reported awareness of decreased respiratory function in the 24 to 48 hours prior to obtaining treatment (e.g., Molfino, Nannini, Martelli, & Slutsky, 1991). Patient also must take appropriate actions to manage their asthma. The greater prevalence of asthma among some minority groups raises the question of differences in perception, reporting, and detection by race or ethnic group. Hardie, Janson, Gold, Carrieri-Kohlman, and Boushey (2000) found that Black and White adults with asthma used different words to describe their experience of bronchoconstriction induced by methacholine challenge, but Harver and colleagues (2011) did not find differences in the words children use to describe breathlessness by ethnic group. As Okelo, Wu, Merriman, Krishnan, and Diette (2007) found that physicians tended to underestimate Blacks’ asthma severity compared with Whites’; the language used to communicate perceptions about asthma and the experience of asthma warrants further research. In a subset of persons with severe asthma, the inability to perceive changes in airflow may be life threatening or fatal. Compared to patients with no near-fatal asthma attacks, patients with near-fatal asthma attacks had significantly lower perceptions of dyspnea to breath-holding (Nannini et al., 2007) and to exercise (Barreiro et al., 2004) and had a blunted respiratory response to hypoxia generated by breathing within a confined space, which results in gradually increasing carbon dioxide (Kikuchi et al., 1994). Inaccurate perception of respiratory status has been associated with repressive-defensive coping (see next section) (Isenberg, Lehrer, & Hochron, 1997; Steiner, Higgs, & Fritz, 1987). Obesity has been inconsistently linked to perceptions of greater dyspnea than those of nonobese persons at comparable levels of pulmonary function (Deesomchok et al., 2010; Salome et al., 2008). Timely and accurate perception of respiratory status is central to appropriate asthma self-management, but research suggests a good deal of variability among patients’ perceptual abilities that may have life-threatening consequences. More work is needed to identify covariates of accurate airflow perception and enhance the generalizability of interventions to improve accurate detection of airflow limitation beyond the laboratory (Harver, 1994). Psychoanalytic Theory From the psychoanalytic perspective, asthma has been posited to develop in response to repressed emotions and

Asthma

emotional expression, such as repressed crying (Alexander, 1955). This perspective views asthma as a psychosomatic illness, suggesting direct causal links between psychological factors and disease. The psychoanalytically informed literature related to asthma is largely limited to clinical case studies (e.g., Levitan, 1985). Two areas of empirical research, however, may have been influenced by these early psychoanalytic formulations, namely, research on alexithymia and the repressive-defensive coping style. Alexithymia Difficulty in labeling and expressing emotions has been termed alexithymia (Nemiah, 1996). Kleiger and Kinsman (1980) used a measure of alexithymia as a subscale of the MMPI and found that alexithymic patients were more likely to be rehospitalized and had longer lengths of stay than did nonalexithymic patients (Dirks, Robinson, & Dirks, 1981); these differences were not attributable to underlying asthma severity. More recently, greater Toronto Alexithymia Scale scores were related to more asthma symptoms and decreased pulmonary function (Feldman, Lehrer, & Hochron, 2002), less asthma control (Chugg, Barton, Antic, & Crockett, 2009), and more emergency room visits (Vazquez, Sandez, et al., 2010) and were more characteristic of patients with near-fatal asthma attacks compared to those without (Vazquez, Romero-Frais, et al., 2010). Asthma symptom complaints may be more readily expressed and socially acceptable ways to communicate distress than are emotions among patients who may be characterized as alexithymic. Helping such patients identify emotions, cope with emotional arousal, and discriminate emotional reactions from asthma symptoms could lead to more appropriate utilization of medical resources. Repressive-Defensive Coping Style The repressive-defensive coping style has received attention in relationship to persons with asthma, although a recent meta-analysis did not find those who use repressive coping to be at increased risk for asthma (Mund & Mitte, 2011). This style is characterized by the co-occurrence of low levels of self-reported distress, high levels of self-reported defensiveness, and high levels of objectively measured arousal and physiological reactivity. Repressivedefensive coping has been associated with immune system downregulation (Jamner, Schwartz, & Leigh, 1988), which could increase risk for respiratory infections and subsequently exacerbate asthma (NHLBI, 2007). Adults with asthma who display repressive-defensive coping demonstrated declines in pulmonary function after exposure to stressful laboratory tasks, and their autonomic

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nervous system was characterized by sympathetic hypoarousal and parasympathetic hyperarousal during these tasks (Feldman, Lehrer, Hochron, & Schwartz, 2002). However, among samples of children with asthma, repressive-defensive coping was not characteristic of a majority of children, was not associated with more physiological reactivity under stress (Nassau, Fritz, & McQuaid, 2000), and was associated with more accurate symptom perception (Fritz, McQuaid, Spirito, & Klein, 1996), which would not be predicted by a psychosomatic model. Alexithymia and the repressive-defensive coping style appear to be the best operationalized concepts that have roots in psychoanalytic theory and have been implicated among persons with asthma. However, the utility of these constructs in explaining important asthma-related processes, such as symptom onset, expression, variability, course, and outcomes, is limited based on current research. Research on repressive-defensive coping among adults is warranted since adults’ styles may be more developed and may exert a stronger influence on self-management behavior than among children. Family Systems Theory Family systems models have been explored primarily in relationship to children and adolescents with asthma. The classic systemic view of family dynamics that creates and perpetuates a psychosomatic illness such as asthma was outlined by Minuchin, Rosman, and Baker (1978). These dysfunctional dynamics include rigidity, overprotectiveness, enmeshment, and lack of conflict resolution. In the systemic view, the function of the illness is to diffuse conflict and maintain homeostasis in the family (e.g., escalating tension between the parents may prompt an asthma attack in the child, which distracts the parents from continuing conflict). Evidence to corroborate a systemic view is largely based on clinical anecdotes, although there have been a few attempts to operationalize and assess key family dynamics. Families with and without a child with asthma engaged in a decision-making task (Di Blasio, Molinari, Peri, & Taverna, 1990). Families with a child with asthma were characterized by protracted decisionmaking times, chaotic responses, lack of agreement, and acquiescence to the child’s wishes, which may reflect an overprotective stance and difficulties with conflict resolution, as would be suggested by systems theory. Observational studies have found mothers of children with asthma to be more critical of their children than mothers of healthy children (Hermanns, Florin, Dietrich, Rieger, & Hahlweg, 1989; Wamboldt, Wamboldt, Gavin,

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Roesler, & Brugman, 1995). These communication patterns would seem inconsistent with the hypothesized characteristic of overprotectiveness in such families, although they may reflect a tendency toward lack of conflict resolution, which would be consistent with systemic hypotheses. An observational study of couples and children with and without asthma (Northey, Griffin, & Krainz, 1998) examined base rates of specific behaviors (e.g., agree, disagree) and sequences of behavior hypothesized to be more characteristic of psychosomatic families, based on the Minuchin and colleagues (1978) model, such as recruitment or solicitation of child input after a parental position statement. Couples with a child with asthma were less likely to agree with one another and were more likely to solicit the child’s input. Couples with a child with asthma who were unsatisfied with their marriage were about half as likely to disagree with one another than were couples without a child with asthma. Relative avoidance of disagreement in the face of relationship distress may preclude problem solving about the source of the disagreement and the subsequent possibility of improvement in relationship satisfaction with problem resolution. The family systems model would posit that involvement of the child deflects attention from the parents’ marital distress: The illness is protective and maintains homeostasis in the family. There are several questionnaires, such as the Family Environment Scale (Moos & Moos, 1986), the Family Adaptability and Cohesion Evaluation Scale (Olson, Portner, & Laree, 1985), and the Family Assessment Device (Epstein, Baldwin, & Bishop, 1983), that are scored to reflect systemic constructs of rigidity, cohesion, conflict, and so forth. These questionnaires have been used to characterize the environment and dynamics of families of children with asthma on a limited basis (e.g., Bender, Milgrom, Rand, & Ackerson, 1998). As yet, however, research informed by family systems theory that focuses on adults with asthma is lacking, although more recent research on family and couple functioning from a broader perspective than the family systems perspective has found associations between pulmonary function, dyspnea, and couple and family functioning (Furgal et al., 2009; Schmaling, Afari, Hopes, Barnhart, & Buchwald, 2009).

PSYCHOLOGICAL FACTORS ASSOCIATED WITH ASTHMA There is a rich literature on the associations of asthma with psychiatric disorders and psychological factors such as stress. Some associations are fairly consistent in the literature, such as the deleterious outcomes associated with

comorbid psychiatric disorders and asthma. Other associations, such as the effects of stress on asthma, appear to be more complex and in need of further study. Effects of Stress and Emotions on Asthma Patients with asthma often believe that stress and emotions can trigger or exacerbate asthma (Rumbak, Kelso, Arheart, & Self, 1993). The association between emotions and airflow has been examined empirically through laboratory-based experiments and studies of the covariation of airflow and emotions in naturalistic conditions. Laboratory Studies Isenberg and colleagues (1992a) reviewed studies that examined responses to emotional provocation among participants with asthma. Across seven studies reviewed that involved the induction of emotions in the laboratory, 31 of 77 (40%) participants showed significant airway constriction in response to emotion. In addition, a trend toward greater likelihood of reacting to emotions among adult versus child participants was found. Since the Isenberg and colleagues (1992a) review, a number of other laboratory studies have been conducted to examine the effects of emotion induction on symptom perception (e.g., breathlessness) and objective measures of pulmonary function. A series of studies by Rietveld and colleagues utilized adolescents with asthma: Emotional imagery during asthma attacks diminished accurate symptom perception and enhanced sensations of breathlessness (Rietveld, Everaerd, & van Beest, 2000) but not changes in lung function. The induction of negative emotions followed by exercise increased subjective asthma symptom reports, which were not associated with lung function (Rietveld & Prins, 1998). Similarly, the induction of stress and negative emotions resulted in increased breathlessness but not airways obstruction; breathlessness was stronger during stress induction than during the induction of actual airway obstruction through bronchial provocation (Rietveld, van Beest, & Everaerd, 1999). The generalizability of the results to adults warrants examination in future studies, as emotion regulation and self-management may improve with experience and maturity. Laboratory studies with adults have also found associations between stress and emotional arousal and objective changes in pulmonary function. Ritz, Steptoe, DeWilde, and Costa (2000) found significant increases in respiratory resistance associated with emotion induction, but this effect did not occur significantly more strongly among subjects with asthma compared to those without. However, adults with asthma had greater increases in asthma

Asthma

and emotional symptoms during stressful tasks (especially tasks during which only passive coping was likely) than adults without asthma. Ritz, Kullowatz, and colleagues (2010) found that participants with asthma had relatively stable airway responses to unpleasant emotional stimuli compared to participants without asthma. In two laboratory studies, adults with asthma discussed two stressful topics with their partners: Decrements in pulmonary function were associated with more hostile and depressed moods in one (Schmaling et al., 1996) and with anxiety in the other (Schmaling et al., 2009). Interactions with significant others resulted in more change in pulmonary function among participants in the first study with more severe asthma than among participants in the second study with asthma of mild-to-moderate severity, which could not be explained by differences in global relationship satisfaction between the two samples, which were comparable. Among the sample with severe asthma, self-reported anxiety was nearly three times that of the sample with asthma of mild-to-moderate severity. More marked anxiety may be related to greater change in pulmonary function among participants with severe asthma. Taken together, stressful laboratory tasks are associated with changes in subjective asthma symptoms and changes in objective measures of pulmonary function, which may be more pronounced among persons with asthma than without (Ritz, Kullowatz, et al., 2010), but this area warrants more research, as does the question of overlap of patients whose airways respond both to stress and to suggestion. Studies in the Natural Environment Several studies have measured the covariation of asthma symptoms and/or measures of airflow with mood states, using daily or more frequent monitoring of patients with asthma. These studies have found that pulmonary function was significantly correlated with mood states in 30% (Hyland, 1990), 50% (Schmaling, McKnight, & Afari, 2002), and 86% (Steptoe & Holmes, 1985) of their samples of adults with asthma. Hyland (1990) found positive mood states were associated with better pulmonary function and more robust associations in the evening than in the morning, and Schmaling and colleagues (2002) also found that the presence of an anxiety disorder was related to stronger daily associations between anxious moods and pulmonary function. Across studies, the moods associated with asthma varied by person. Apter and her colleagues (1997) also found that positive mood states were associated with better pulmonary function and that unpleasant and passive moods were

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associated with worse pulmonary function, after controlling for symptom ratings. Similarly, Smyth, Soefer, and colleagues (1999) found positive moods were associated with increased peak flow and negative moods and stressors were associated with peak flow decrements; overall, moods and stressors accounted for 17% of the variance in pulmonary function. Affleck and his colleagues (2000) identified arousal levels to be more strongly associated with pulmonary function than hedonic valence. This approach represents an important step toward reducing error in the measurement of mood. More recently, Ritz, Rosenfeld, DeWilde, and Steptoe (2010) demonstrated within-person variability in associations between mood and pulmonary function across different times of the day, in addition to replicating idiosyncratic associations between mood and pulmonary function by person, as other studies have found. An important longitudinal study found hostility to be associated with reduced pulmonary function and to predict more rapid decline in lung function over time (Kubzansky et al., 2006). Summary The critique by Rietveld, Everaerd, and Creer (2000) of the methodological issues evident within the studies in this area is worthy of note. For example, peak flow measures are dependent on effort, and spurious associations between mood and asthma could result if the measure of asthma is dependent on effort and influenced by mood. One possible interpretation of this research is that the association between stress and asthma is weak. Another interpretation is that the mechanisms involved in these associations involve multiple physiological pathways, and methods to untangle mechanisms and effects are challenging. The data suggest that the association between stress and asthma is idiographic, determined on an individual basis, and influenced by an as-yet not fully characterized set of variables that convey or protect against the risk for an association between stress and asthma. This interpretation is consistent with the findings that some but not all individuals demonstrate mood/stress–pulmonary function associations and that different emotions are implicated for different individuals. Future research in this area should systematically examine data resulting from laboratory versus naturalistic sources of emotions, consider a parsimonious set of interaction effects such as the interaction of emotion induction and suggestion or emotion induction in various environments, examine the effects of emotions with positive versus negative valences, consider the role of emotional intensity, and examine these relationships in well-characterized

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subgroups of patients for differences by gender, age group, asthma severity, and so forth. In addition, the type of stressor and the potential coping methods available for the participants’ use are worthy of further study. Potentially, the trend toward different results obtained in laboratory situations and in naturalistic studies may be attributable to differences in the ability to engage in active or passive coping, as the former has been associated with bronchodilation and the latter with bronchoconstriction (Lehrer, 1998; Lehrer et al., 1996). Comorbid Psychiatric Disorders: Prevalence and Effects Asthma is associated with a greater prevalence of certain anxiety and mood disorders, which the next section reviews. These comorbidities are associated with poorer functional status than among persons with asthma without comorbid psychiatric disorders. Anxiety Disorders Panic disorder occurs among patients with asthma at greater rates than in the general population. For example, the National Comorbidity Survey–Replication (NCS-R) (Kessler, Chiu, Demier, & Walters, 2005) reported the 12month prevalence of panic disorder to be 2.7%. NCS-R participants with asthma were nearly 3 times more likely to have panic disorder than participants without asthma (Roy-Byrne et al., 2008). The prevalence of panic disorder among samples of patients with asthma in other studies has ranged between 6.5% and 24% (Katon, Richardson, Lozano, & McCauley, 2004). The reasons for this increased co-occurrence are not known, but there are several possible contributing factors: Patients with each condition experience similar symptoms (Schmaling & Bell, 1997) and engage in avoidance of situations where previous attacks have occurred or of venues similar to previous attacks. Anxiety-related hyperventilation may exacerbate asthma through airway cooling, and asthma may increase susceptibility to panic through hypercapnia and the anxiogenic side effects of beta-agonist medications. Abelson, Khan, and Giardino (2010) review other potential associations between asthma and panic. Other anxiety disorders, such as generalized anxiety disorder (GAD), also occur at higher rates among people with asthma than in the general population. For example, Lavoie, Boudreau, Campbell and Bacon (2011) found a 4% prevalence of GAD among a large sample of outpatients with asthma, as compared to the 3.1% 12-month prevalence in the NCS-R (Kessler et al., 2005). NCS-R

participants with asthma were nearly three times more likely to have GAD than those without asthma (Roy-Byrne et al., 2008). Mood Disorders Asthma is associated with a greater prevalence of mood disorders than is present in the general population. The NCS-R found a 12-month prevalence of 6.7% for major depression and 1.5% for dysthymia (Kessler et al., 2005); those with asthma in the NCS-R sample were about 2.5 times more likely to have major depression or dysthymia than those without asthma (Roy-Byrne et al., 2008). Persons with asthma are 1.7 times more likely to attempt suicide than those without (Messias, Clarke, & Goodwin, 2010). Asthma is likely to precede depression because it most often arises in childhood. Events that are linked to the initiation of depressive episodes among persons with asthma are of interest for several reasons, including the potential to prevent depression onset or mitigate its severity and consequently lessen the burden of co-occurring conditions on patient functioning and health-care costs. Katz and colleagues (2010) followed a cohort of participants with asthma but without depression and found that decreased asthma control was associated with the new onset of a depressive episode. This area warrants further research. Both asthma and depression are inflammatory conditions that involve activation of the HPA axis, as do stress, obesity, allergies, and other conditions that co-occur with asthma. Hypothesized links between the mechanisms involved in depression and allergies (and by association, asthma) have been articulated previously (Marshall, 1993), and more recently, Van Lieshout, Bienenstock, and MacQueen (2009) identify other possible pathways underlying the asthma–depression association and conclude that depression that co-occurs with asthma may be due to stress (of asthma or other events) or asthma medications. It was noted earlier that respiratory drive and the ability to perceive dyspnea were impaired among patients with a near-fatal asthma attack. Depression has been postulated to be associated with these impairments (Allen, Hickie, Gandevia, & McKenzie, 1994); others have suggested that depression is an important risk factor for fatal asthma (Miller, 1987). Panic fear has been linked to medication overuse (discussed later), but depression has been repeatedly linked to nonadherence in the direction of underuse. For example, high levels of depressive symptoms were associated with an 11-fold greater likelihood of poor adherence after discharge from hospitalizations for asthma than among

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participants with low levels of depressive symptoms (Smith et al., 2006). In the context of treatment for depression among those with asthma, reductions in depressive symptoms have been correlated with reductions in asthma symptoms (Brown et al., 2005; Rosenkranz & Davidson, 2009); however, adherence was not assessed. An important area for future research will be to examine if treatment for depression enhances asthma self-management, similar to efforts in diabetes care (Katon, Von Korff, et al., 2004). Sequelae of Comorbid Psychiatric Disorders Population-based studies such as the Medical Outcomes Study demonstrate that, individually, psychiatric conditions and chronic medical conditions are associated with poorer functional status (e.g., Hays, Wells, Sherbourne, Rogers, & Spritzer, 1995). Asthma is associated with a lower quality of life (Quirk & Jones, 1990) and generally has a negative effect on functional status (Bousquet et al., 1994; Ried, Nau, & Grainger-Rousseau, 1999). In particular, patients with asthma and psychiatric disorders have worse functional status and health perceptions than patients with asthma but without psychiatric disorders (Afari, Schmaling, Barnhart, & Buchwald, 2001; Goodwin, Pagura, Cox, & Sareen, 2010). Comorbid asthma and psychiatric disorders are associated with substantial health-care utilization and work absence (Blanc, Jones, Besson, Katz, & Yelin, 1993; Goodwin et al., 2010; Hutter, Knecht, & Baumeister, 2011). Autonomic Nervous System and Inflammatory Processes in Stress and Asthma: Possible Connections Stress and emotions are associated with poorer pulmonary function among some persons with asthma, which is physiologically paradoxical. Stress results in sympathetic activation and the release of sympathomimetics (cortisol, epinephrine), which are known to relax airway smooth muscles; one would expect stress to be associated with bronchodilation. Several thoughtful review articles suggest potential pathways by which stress and emotions may affect pulmonary function (Lehrer, Isenberg, & Hochron, 1993; Rietveld, Everaerd, & Creer, 2000; Wright, Rodriguez, & Cohen, 1998). The immune, endocrine, and autonomic nervous systems may contribute to airway variability and interact in complex ways to help explain stress-related changes in airway function. Stress increases vulnerability to infection; upper respiratory infections are frequently associated with asthma exacerbations. Stress affects immune function, and changes in immune function may include inflammatory

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responses, including airway inflammation. Individual differences in immune function responses to stress may partially explain idiographic pulmonary responses to stress. Bronchoconstriction may result from vagal reactivity in response to stress, reflecting contributions of the autonomic nervous system to airway control. Chronic stress may result in glucocorticoid resistance and a hyporesponsive HPA axis under added acute stress, suggesting a partial explanation of the seemingly paradoxical response of bronchoconstriction when stressed among some patients with asthma. Stress results in immune system downregulation and increased risk of infection (Cohen, Tyrrell, & Smith, 1991), which in turn causes inflammation and increased risk of asthma exacerbations. Acute stress occurring in the context of higher levels of chronic stress has been found to be particularly provocative of inflammatory responses in children with asthma (Marin, Chen, Munch, & Miller, 2009). The interactions of acute and chronic stress warrant further research.

MEDICAL TREATMENTS FOR ASTHMA The Expert Panel Report 3 (EPR3) recommendations (NHLBI, 2007) are considered the gold standard of current practice guidelines. These recommendations outline four levels of asthma severity (intermittent, mild-persistent, moderate-persistent, and severe-persistent) defined by a combination of impairment and risk factors of symptom frequency, nighttime awakenings, quick-relief medication use, oral corticosteroid use, interference with normal activity, and lung function parameters. Treatment recommendations are matched to the level of severity, wherein treatment guidelines are yoked to severity step. Control is the overall goal of asthma management, including reduced impairment and reduced risk (for example, of asthma exacerbations that require hospitalization). The EPR3’s four components of asthma management are assessment and monitoring; patient self-management education and a partnership between the patient, the family, physician(s), and other member(s) of the treatment team; control of environmental factors and comorbid conditions that affect asthma; and the use of medications. Medications to treat asthma typically fall into two categories: long-term control and quick-relief medications. Consistent with the emphasis on the inflammatory processes involved in asthma, long-term control medications exert anti-inflammatory effects and include inhaled and oral forms. Quick-relief medications reverse acute bronchoconstriction through relaxing the smooth

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muscles; examples include short-acting beta-2 agonists (e.g., albuterol). Intermittent asthma may be controlled through the as-needed use of quick-relief medications. Severe-persistent asthma requires daily long-term control medications. Common side effects of quick-relief medications include nervousness, rapid heartbeat, trembling, and headaches. More common side effects of inhaled longterm control medications include hoarseness and sore or dry mouth and throat, whereas oral long-term control medications (corticosteroids) are most commonly associated with increased appetite and nervousness or restlessness. (Patients should understand that corticosteroids differ from anabolic steroids, which may be used illegally to enhance muscle mass and have significant iatrogenic effects.) Erroneous and dysfunctional beliefs about asthma and asthma medications may impede adherence with asthma self-management. Adherence with recommended medication regimens for asthma is a challenging issue (see next section), and the EPR3 emphasizes the role of patient self-management in optimal asthma care. According to the EPR3 (NHLBI, 2007), asthma selfmanagement should include these components: asthma education and training in asthma management skills, selfmonitoring of symptoms or of peak flow, a written asthma action plan that includes instructions for daily management and how to recognize and respond to worsening symptoms, and regular assessment by a consistent clinician. Although the “CDC’s top priority is getting people to manage their asthma better” (CDC, 2011, p. 550), there is significant room for improvement in provider support of patient self-management and other upstream effects: treatment providers inconsistently give patients sufficient information, skills, and tools to be able to engage in selfmanagement. A population-based study of children and adults with asthma reported that only one third had a written action plan, about half had been given advice on environmental controls, two thirds had been taught how to respond to an asthma attack, and 60% had been taught how to recognize the early signs and symptoms of an asthma attack; a greater percentage of children reported having each of these self-management components than did adult patients (CDC, 2011). Psychologists can assess the quality and completeness of patients’ self-management support.

ADHERENCE Discussions of treatment adherence generally focus on patient behavior; however, as was noted earlier, providers

also demonstrate significant nonadherence with treatment guidelines. Population-based surveys found that about two thirds of people with asthma reported using a quickrelief inhaler during the preceding 3 months, but only one third used a long-term control medicine (inhaled or oral) (CDC, 2011). If these findings are correlated with those of another population-based survey of asthma symptoms that found that over 75% reported symptoms consistent with moderate to severe persistent disease (Fuhlbrigge et al., 2002), long-term control medications appear to be underprescribed or prescribed but underused. Receiving education on allergen avoidance and environmental control from providers is a prerequisite to patient adherence. Provider adherence is low with the practice guideline recommendation to evaluate asthma patients for allergies: Less than two thirds of patients with moderate or severe asthma reported ever having had an allergy evaluation (Meng, Leung, Berkbigler, Halbert, & Legorreta, 1999). There may be a number of pragmatic barriers to the consistent implementation of practice guidelines, such as the pressure for treatment providers to see more patients in less time, or avoid costs of allergy evaluations in managed care settings, or limited dissemination and lack of awareness of current practice guidelines. Patients who receive their asthma care from a specialist rather than a general practitioner have self-management practices more consistent with treatment guidelines (Legoretta et al., 1998; Meng et al., 1999; Vollmer et al., 1997). The extent to which practitioners’ behavior is consistent with practice guidelines should be determined before assessing patients’ behavior; patients should not be considered nonadherent if the appropriate evaluations and treatments have not been first established by the practitioner. However, these steps have not been taken consistently in the studies to date. The lack of patient adherence to prescribed medication regimens is thought to explain significant proportions of morbidity, mortality, urgent and emergent medical care, and resulting costs (Bender & Rand, 2004). Primary nonadherence—not filling prescriptions—has been studied less often than secondary nonadherence, not using filled prescriptions as prescribed. Regarding primary nonadherence, Williams and colleagues (2007) found that 8% of health maintenance organization patients with asthma did not fill their long-term control medication prescriptions within 3 months of receipt. Secondary medication adherence can be described in terms of the overall percentage of prescribed medication that is taken or as a percentage of a sample that takes an adequate amount of medication, with a criterion for adequacy defined as a proportion of the total prescribed (e.g., 80%). Using the

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former method, it has been estimated that patients take about 50% of prescribed medication (Bender, Milgrom, & Rand, 1997). Using the latter method, 75% of children took less than 80% of prescribed medication based on objective measures—although only 8% self-reported adherence less than 80%, which underscores the importance of objective measures (Krishnan et al., 2011). Adherence with quick-relief medications is typically better than with long-term control medications (e.g., Kelloway, Wyatt, DeMarco, & Adlis, 2000). There are a number of reasons patients prefer quick-relief medications, such as their fast-acting effects being reinforcing, despite the greater importance of long-term control medications in ongoing asthma management. Researchers have cast a broad net in their efforts to understand adherence difficulties and identify predictors of nonadherence. There are methodological challenges inherent in the study of adherence, ranging from the reactive effects of such research (that participants change their medication-taking behavior when they know it is monitored), to the lack of assays for levels of common asthma medications in body fluids, to ethical considerations in the covert monitoring of medication use (e.g., deception may be involved in which participants do not receive full disclosure regarding the purposes of the research; see Levine, 1994). Sociodemographic variables have been linked to better adherence, including older age, female gender, more education, White ethnicity, and higher socioeconomic status (see Hernandez & Schmaling, 2004, for a review). The identification of potentially modifiable variables that are associated with adherence is of interest in terms of intervention development. Efforts to better understand patients’ perspectives through qualitative research (Adams, Pill, & Jones, 1997) and the development of self-report measures may provide information useful for patient-centered interventions to improve adherence. Self-report questionnaires have been developed to assess patients’ reasons for and against taking their asthma medications as prescribed (Schmaling, Afari, & Blume, 2000), for and against going to asthma follow-up visits (Smith, Highstein, Jaffe, Fisher, & Strunk, 2002), beliefs about long-term control medications (Foster et al., 2011), and patterns of overall adherence intentions. Bokhour and colleagues (2008) identified three patterns of nonadherence intentions among parents of children with asthma: (1) unintentional, in which the parents believed they were being adherent; (2) unplanned, in which the parents intended to be adherent but could not; and (3) intentional. Each pattern suggests different intervention targets, such as corrective information, addressing beliefs and barriers,

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and increasing readiness to adhere, respectively. Low expectations for symptoms control (Smith et al., 2008) and lack of established self-management routines (Rand, 2005) are other factors potentially modifiable by cognitive and behavioral interventions: Clerisme-Beaty and her colleagues (2011) found that positively manipulated expectancies about medications were associated with better adherence. Individually tailored text messages were found to improve adherence (Petrie, Perry, Broadbent, & Weinman, 2011), perhaps in part because the text messages helped prompt behavioral routines and addressed dysfunctional beliefs. Adherence with medications is only one component of treatment adherence. Adherence with allergen avoidance and environmental control advice was reported by 81% of children but only 52% of adults with asthma (CDC, 2011). Investigations on factors associated with atopic patients’ adherence with allergen avoidance or control (e.g., regular cleaning and washing to decrease dust mite exposure) would be a useful area for future research.

PSYCHOSOCIAL FACTORS ASSOCIATED WITH MEDICAL TREATMENTS AND OUTCOMES As discussed previously, psychiatric disorders and emotional arousal may be associated with inaccurate perceptions of pulmonary status and inappropriate responses (Rushford, Tiller, & Pain, 1998) through several possible mechanisms (Rietveld, 1998). Two additional psychosocial characteristics that have been reliably linked to nonoptimal asthma self-management are discussed in this section: the tendency to respond to asthma with panic-fear and social relationships. Panic-Fear Research on the role of panic-fear in asthma has focused on generalized panic-fear and asthma-specific panic-fear. Generalized tendencies toward panic-fear reactions have been measured using a subscale of the MMPI, and tendencies for panicky and fearful responses to asthma symptoms have been measured using a subscale of the Asthma Symptom Checklist (Kinsman, Luparello, O’Banion, & Spector, 1973). Independent of objective asthma severity, both high generalized and asthma-specific panicfear have been associated with more medical utilization (Dahlem, Kinsman, & Horton, 1977; Dirks, Kinsman, et al., 1977; Feldman, Siddique, Thompson, Lehrer, 2009; Hyland, Kenyon, Taylor, & Morice, 1993; Kinsman,

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Dahlem, Spector, & Staudenmayer, 1977; Nouwen, Freeston, Labbe, & Boulet, 1999). However, generalized panic-fear may be a better predictor of asthma-related morbidity than asthma-specific panic-fear (Dirks, Fross, & Evans, 1977; Feldman et al., 2009). Greater generalized panic-fear has been associated with higher rehospitalization rates (Dirks, Kinsman, Horton, Fross, & Jones, 1978), whereas greater illness-specific panic-fear has been associated with lower rehospitalization rates (Staudenmeyer, Kinsman, Dirks, Spector, & Wangaard, 1979). High asthma-specific panic-fear is accompanied by more catastrophic cognitions (Carr, Lehrer, & Hochron, 1995; Giardino, Schmaling, & Afari, 2002), particularly among patients who also meet criteria for panic disorder (Carr, Lehrer, Rausch, & Hochron, 1994), suggesting that cognitive interventions are indicated for patients with comorbid asthma and panic disorder. Persons with high generalized panic-fear may not be able to determine the seriousness of a threat and determine onset and offset of those threats, leading to a generally heightened reactivity. Moderate levels of asthma-specific panic-fear are optimal, signaling the need for vigilance and action (e.g., increased self-monitoring, taking appropriate medications) by the patient. By contrast, patients with low asthma-specific panic-fear may ignore early symptoms that signal the need for more medication, possibly leading to the need for (potentially avertable) high-intensity intervention to reverse the airflow obstruction. Taken together, some asthma-specific panic-fear is adaptive, but high levels of generalized panic-fear are maladaptive for optimal selfmanagement of asthma. Social Relationships Social relationships can buffer the effects of stress on illness or be another source of stress. An early study showed that patients with asthma who were high in psychosocial assets, including family and interpersonal relationships, required lower steroid doses than those who were low in psychosocial assets (De Araujo, van Arsdel, Holmes, & Dudley, 1973). More relationship satisfaction was associated with more medication use, after accounting for the effects of disease severity, suggesting that patients in more satisfied relationships may be more adherent (Schmaling, Afari, Barnhart, & Buchwald, 1997). The presence of an intimate partner (Rand, Nides, Cowles, Wise, & Connett, 1995) and satisfaction with close relationships may be associated with more appropriate medication utilization (more adherent use of medications; less necessity for oral steroids, suggesting better disease control through inhaled medications) and less morbidity due to asthma.

Fearful reactions, reviewed earlier, and social relationships could interact in at least two ways: First, safety signals are items (e.g., medications) or people associated with feelings of security and relief (Rachman, 1984). Among patients with asthma, the presence of the significant other may be hypothesized to decrease fearful cognitions and be associated with lesser reports of asthma symptoms. An alternate hypothesis comes from kindling-sensitization models that posit that over time, increasingly lower levels of stimuli are needed to prompt the occurrence of the target symptoms (Post, Rubinow, & Ballenger, 1986); to the extent that the partner is a source of stress, the partner may be associated with greater reports of asthma symptoms over time. Giardino and colleagues (2002) found that catastrophic cognitions were related to asthma-specific panic-fear only among couples with high, but not low, relationship satisfaction, independent of asthma severity, suggesting that partners may be safety signals for the expression of the emotional symptoms of asthma only for patients in satisfied relationships—in this study, patients in unsatisfied relationships expressed physical symptoms. These interactions await clarification in future research.

PSYCHOLOGICAL INTERVENTIONS FOR ASTHMA A number of cognitive and behavioral interventions for asthma have been tested, including biofeedback techniques, hypnosis, motivational interviewing, problemsolving therapy, and education, among others. In general, the evidence base for any one of these approaches is relatively small, and study methodology warrants improvement. Nonetheless, there are a number of promising and unaddressed opportunities for psychologists to test intervention techniques that could improve asthma control. Asthma Education Asthma self-management involves a number of complex behaviors. The EPR3 (2007) recommends that each asthma patient have a written action plan that addresses (a) daily management and (b) how to recognize and manage worsening asthma, based on symptoms or peak flows. Asthma severity is described by three zones that are based on signs, symptoms, and peak flow values, color-coded like traffic lights. The green zone is characterized by feeling well and experiencing no symptoms or functional limitations and relatively normal pulmonary function. Prevention is the goal of self-management when the patient is in the green

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zone: The patient takes daily long-term control medication and avoids and controls potential triggers. The yellow zone is characterized by not feeling well, symptoms or functional limitations, or diminished peak flow. Typically, the patient takes quick-relief medication and may increase the dose of long-term control medication. If yellow zone symptomatology does not resolve within a specific time frame, the action plan includes instructions on next steps, which could include contacting his or her asthma physician. The red zone is characterized by the signs and symptoms of a severe asthma exacerbation, for which the patient is instructed to seek medical advice. Asthma education involves instructing the patient about basic facts of asthma and the various asthma medications, teaching techniques for using inhalers and avoiding allergens, and devising plans for daily self-management and worsening symptoms. Asthma education programs increase knowledge about asthma but have been associated with only modest or inconsistent improvements in asthmarelated outcomes (Clark, Mitchell, & Rand, 2009; Coffman, Cabana, Halpin, & Yelin, 2008). Generic asthma education programs are relatively easier to disseminate but most likely to be associated with “underwhelming results” (Clark et al., 2009, p. S190); on the other hand, tailored or individualized programs are more difficult and more effective. The sections that follow describe psychosocial interventions that may help achieve the EPR3 goals of asthma control and minimal functional limitations. Motivational Interviewing (MI) Education and knowledge are assumed to be bases for appropriate attitudes, beliefs, and better self-management behavior, which are in turn assumed to be associated with better asthma control and outcomes. However, knowledge shows weak associations with improved attitudes or behaviors. One possible explanation for these results is that patients vary in their readiness to engage in asthma selfmanagement behaviors. MI (Miller & Rollnick, 2002) is a patient-centered approach to improving motivation to change (see Borrelli, Rickert, Weinstein, & Rathier, 2007, for a discussion of applications to adherence). Two single group pre-post studies of MI have been conducted. Thirty-seven Black adolescents who had presented to the emergency room with an asthma exacerbation received five sessions of MI conducted through home visits. Readiness to adhere to treatment increased, but adherence per se did not change (Riekert, Borrelli, Bilderback, & Rand, 2011). Halterman and colleagues (2011) found more symptom-free days,

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better motivation to adhere, and less airway inflammation among 28 teenagers after three sessions of MI. In addition, two randomized, controlled trials that included MI have been completed (Lozano et al., 2004; Schmaling, Blume, & Afari, 2001), although MI was only one component of a comprehensive care approach with one study (Lozano et al., 2004). Schmaling and colleagues (2001) randomly assigned 25 adult patients presenting to emergency rooms for asthma exacerbations to a single session of asthma education or asthma education plus MI to enhance adherence. Education alone improved knowledge but not motivation to adhere, whereas MI increased motivation to adhere. The large (N = 638 children) Lozano and colleagues (2004) trial compared peer leader physician behavior with a comprehensive planned asthma care intervention that included MI (Lozano & Schmaling, 1998). Children in the latter intervention had fewer symptom days and better adherence with long-term control medications. Taken together, these studies suggest that MI is worthy of further study, perhaps especially related to enhancing readiness to adherence with asthma self-care plans. Problem-Solving Therapy (PST) PST is based on the premise that a systematic approach to the identifying and tackling problems can decrease the stress associated with unresolved problems. It involves the generation of individualized plans to address (typically) patient-identified problems. Three studies of PST in asthma have shown few positive effects, however. A large (N = 333 adults, mostly women and Black) study of PST plus prescription monitoring versus asthma education plus prescription monitoring found no change by treatment group: Adherence to treatment decreased for both groups, and quality of life and asthma control improved for both groups (Apter et al., 2011). In this study, PST was predicated on “adherence being presented as a problem to be solved” (p. 517). Although readiness to change was not assessed in this study, MI would predict that the imposition of a problem to be solved on those not ready to change might increase resistance and nonadherence. Indeed, in their discussion, the authors state that “patients were not motivated to achieve better adherence. Thus, this intervention is too far ‘downstream’; instead, motivation needs to be addressed and addressed better, considering patients’ other priorities and problems” (p. 522). Seid, Varni, Gidwani, Gelhard, and Stymer (2010) compared wait-list control with five sessions of asthma education care coordination (CC) or five sessions of CC followed by six sessions of PST (N = 252 mostly Hispanic children with persistent asthma and their parents).

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Treatment lengths differed, as did treatment engagement: Of the families in CC+PST, about half completed all PST sessions, but a quarter completed none. Using an intentto-treat approach, at posttreatment they found increased general quality of life but no change for asthma-specific quality of life or nighttime symptoms; this result was not found at 6-month follow-up. An emphasis on the selection of potentially modifiable or controllable problems is part of PST, which is important, given other work suggesting that anxiety was associated with asthma-related and life stress only among children with high problemsolving skills (Murdock et al., 2010). Finally, a single session of PST, education, and medical care was compared to medical care alone and resulted in no changes in asthma symptoms (Walders et al., 2006). PST would seem to be a very helpful component of treatment among those motivated and ready to tackle a modifiable problem, but MI would be a more appropriate starting point for patients less ready to change (Lozano & Schmaling, 1998). Other Forms of Psychotherapy and Hypnosis The EPR3 (NHLBI, 2007) guidelines recommend referral to psychologists or other mental health professionals when stress or comorbid disorders such as depression appear to interfere with medical management of asthma. The identification of patient-specific psychosocial issues amenable to intervention is one way to be responsive to the patientcentered tailoring recommended by the EPR3. Sommaruga and colleagues (1995) compared asthma education plus three sessions of cognitive-behavioral therapy (CBT) focusing on areas that could interfere with asthma management versus usual medical care but found few significant between-group differences. In an uncontrolled study, Park, Sawyer, and Glaun (1996) applied principles of CBT for panic disorder to children with asthma reporting greater subjective complaints and consuming medication in excess of the level warranted by their pulmonary impairment. In the 12 months following treatment, the rate of hospitalization for asthma decreased, but other measures of clinical outcome were not analyzed. Lehrer and colleagues (2008) combined components of asthma education and CBT for panic disorder into 8- and 14-session treatment protocols appropriate for adults with asthma and panic disorder. The longer protocol was associated with significantly more dropouts than the shorter protocol, and both protocols were associated with significant decreases in both panic and asthma symptoms. A review by Brown (2007) deemed hypnosis as possibly efficacious for decreasing asthma symptoms and airway

obstruction. Studies of hypnosis as a treatment of asthma among children (Kohen, 1995; Kohen & Wynne, 1997) have found improvement in asthma symptoms but not in pulmonary function. Written Emotional Expression Exercises Based on the research on alexithymia, repressive-defensive coping, and the association of psychiatric disorders with asthma reviewed earlier, it is reasonable to expect that facilitating emotional expression may be helpful to patients with asthma. People with asthma are more likely to experience negative emotions but less likely to express them (Lehrer, Isenberg, & Hochron, 1993). Smyth, Stone, Hurewitz, and Kaell (1999) found that adults with asthma who wrote about traumatic experiences demonstrated improved pulmonary function after 4-month follow-up, with no improvement noted in a control group who wrote on innocuous topics. Similarly, Hockemeyer and Smyth (2002) found that written emotional expression plus relaxation training based on deep breathing and cognitive restructuring resulted in improved pulmonary function compared to an education-based attention control group. Harris, Thoresen, Humphreys, and Paul (2005) attempted to repeat the Smythe and colleagues (1999) trial but did not replicate the favorable results. Another randomized controlled trial of written emotional disclosure compared to a control condition among 50 adolescents with asthma was associated with decreased symptoms but no change in pulmonary function (Warner et al., 2006). Written emotional expression is an appealing intervention for asthma, but replication of its effects on pulmonary function is needed. Progressive Muscle Relaxation Training Reviews of clinical trials that have included relaxation training (Huntley, White, & Ernst, 2002; Ritz, Dahme, & Roth, 2004; Yorke, Fleming, & Shuldham, 2007) have concluded that progressive muscle relaxation interventions yield small and inconsistent effects on pulmonary function. More recent studies have yielded similar results (Lauman et al., 2009; Nickel et al., 2005, 2006). It is possible that relaxation training may have an important effect only among people with emotional asthma triggers or that the preexisting effects of asthma medication attenuated the effects of relaxation training in these studies. Breath Control Techniques A 2004 review of breathing exercises for asthma (Holloway & Ram, 2004) found promising results based on

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single studies and single measures, with the variability in techniques and designs making more firm conclusions impossible. More recent trials have examined the effects of specific forms of breath control techniques on asthma. The Buteyko method, involving learning to avoid hyperventilation and taping the mouth closed at night to avoid oral breathing, has been considered promising (Kellett & Mullan, 2002), although few studies are available in nonRussian language literature. A comparison of the Buteyko method showed no differences at 6-month follow-up from a control condition of paced breathing (Cowie, Conley, Underwood, & Reader, 2008). Five sessions of the Papworth method, involving slow expiration, resulted in decreased asthma symptoms but no differences in pulmonary function compared to usual care (Holloway & West, 2007). Another trial found decreased asthma symptoms at 6 months but not at 1 month after the Papworth method, compared to asthma education, but no differences in pulmonary function (Thomas et al., 2009). Studies have noted changes in anxiety and depression symptoms as a function of the breathing intervention (Holloway & West, 2007; Thomas et al., 2009). Biofeedback Techniques Several varieties of biofeedback, including respiratory resistance biofeedback, EMG biofeedback, and heart rate variability (HRV) biofeedback, have been posited to ease bronchoconstriction through various physiological pathways. A review of these techniques (Ritz, Dahme, & Roth, 2004) concluded that there is scant evidence to support the ability of respiratory resistance biofeedback or frontal EMG biofeedback to improve asthma. These two techniques have relatively more accrued evidence, although small sample sizes, the use of varying outcome measures, and other design challenges limit conclusions. Studies of heart rate variability (HRV) biofeedback show promise for additional research. The increase and decrease in heart rate with inspiration and expiration is mediated by vagal outflow at the sinoatrial node. Normally, the magnitude of heart rate variability at respiratory frequency is directly associated with efferent vagal activity and may also be related to autonomic regulatory control. Slow (approximately six breaths per minute), abdominal, pursed-lips breathing is used to increase the magnitude of HRV; a treatment manual is available (Lehrer, Vaschillo, & Vaschillo, 2000). Following two earlier suggestive pilot studies (Lehrer, Carr, et al., 1997; Lehrer, Smetankin, & Potapova, 2000), Lehrer and colleagues (2004) randomly assigned 94 adults with asthma to HRV biofeedback plus

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abdominal breathing with prolonged exhalation versus HRV alone versus placebo EEG feedback versus wait-list control. They found that participants in both HRV groups and the placebo EEG group reported decreased symptoms over time, but only participants in the two HRV groups showed increased pulmonary function. Replication beyond Lehrer’s group will be important to demonstrate. Lifestyle and Complementary and Alternative Medicine Interventions Therapeutic lifestyle changes, including exercise, nutrition, and spending time in nature, have been deemed “underutilized” by mental health professionals (Walsh, 2011). Complementary and alternative medicine use is common among adults with asthma; about 40% report the use of herbs, vitamins, acupuncture, acupressure, aromatherapy, homeopathy, yoga, reflexology, or breathing techniques (Marino & Shen, 2010). Few of these methods have been studied using sound clinical trial methodology, and it is rare to find sufficient literature to conduct metaanalyses. (For an exception, see Martin and colleagues [2002] for a meta-analysis of acupuncture studies that did not find a significant effect in asthma.) Putative mechanisms of action have been posited for some lifestyle factors but not others; cross-sectional or longitudinal relationships have been demonstrated between asthma symptoms or pulmonary function and lifestyle factors (e.g., insufficient vitamin D: Bozzetto, Carraro, Giordano, Boner, & Baraldi, 2011). Intervention studies sometimes address multiple lifestyle components in one treatment, which precludes the ability to determine the active component(s) of a treatment package (for an example, see Vempati, Bijlani, & Deepack, 2009). Lifestyle factors, such as exercise and nutrition, are directly related to asthma (see comments on vitamin D, for example, and also Garcia-Aymerich, Varraso, Anto, & Camargo, 2009, who found level of physical activity to be inversely related to asthma exacerbations). Lifestyle changes also are relevant to weight control. Obesity is a risk factor for the development of asthma and may represent a unique asthma phenotype (Dixon et al., 2010). Body mass index is inversely related to asthma-related quality of life (Grammer et al., 2010). Weight loss is associated with improvements in asthma outcomes (Eneli, Skybo, & Camargo, 2008), as is aerobic training (Mendes et al., 2010). A review of trials of yoga for asthma found beneficial effects on pulmonary function and asthma symptoms among half of the studies (Posadzki & Ernst, 2011).

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Kligler and colleagues (2011) found positive effects on symptoms but not on pulmonary function in a treatment comprised of yoga, nutrition, and counseling. There is substantial heterogeneity in yoga; some trials have used only single components of breathing (see earlier) or postures. However, yoga is considered a comprehensive lifestyle inclusive of diet, breathing, postures, meditation, and other components. Vempati and colleagues (2009) found improved pulmonary function and enhanced quality of life after a comprehensive 2-week intervention. These studies suggested that yoga may have greater effects on the subjective symptoms of asthma than on physiological function. However, these conclusions remain tentative because of the small amount of research on this topic. Discussion Reviews of psychological interventions for asthma (Huntley et al., 2002; Posadzki & Ernst, 2011; Ritz et al., 2004; Yorke et al., 2007) and other observations of the state of this literature reveal several themes: 1. Studies lack methodological rigor, with many more excluded from the reviews than included on this basis. Psychosocial intervention research in asthma also has yet to develop systematically from highly controlled efficacy trials to effectiveness studies in clinical settings, and to dismantling studies of effective multicomponent treatments. 2. Studies tend to show intervention effects related to subjective dependent variables, quality of life, and symptoms more than of objective dependent variables, such as pulmonary function. 3. The field lacks maturity, replicated results, and programmatic direction. Yorke and colleagues (2007) noted that few researchers have conducted more than one intervention study. 4. Although some trials have used the same dependent variables, which facilitates cross-study comparisons, it would be helpful to have a common set of dependent or outcome variables, such as has been developed for depression treatment trials (Frank et al., 1991), with good psychometric characteristics and identified ranges of clinical significance or minimally important change (Juniper, Guyatt, Willan, & Griffith, 1994). Given the increasing attention paid to the role of chronic and acute inflammation in asthma (NHLBI, 2007), measures of inflammation should be included on a list of standard outcome measures. Studies have found inflammation to decrease, for example, as a function of muscle relaxation (Lahmann et al., 2010) and stress management

(Cast´es et al., 1999) or have not found change, for example, with a comprehensive yoga lifestyle intervention (Vempati et al., 2009); HRV biofeedback attenuated the effects of induced systemic inflammation in healthy persons (Lehrer et al., 2010). 5. Psychosocial variables and interventions should be included in the identification of asthma phenotypes and the development of tailored treatment approaches for asthma (CDC, 2011).

CONCLUSIONS, UNANSWERED QUESTIONS, AND FUTURE DIRECTIONS Asthma is a common and costly chronic illness of increasing prevalence. Behavioral science can contribute to advancing our understanding of asthma and its treatment. A review of the application of major psychological theories to asthma research revealed some support for classical conditioning and the role of cognitive processes. By contrast, research informed by other theories is appealing but relatively unexplored. This review of the associations of asthma with stress or emotions suggested that they are related among some but not all persons with asthma in an idiosyncratic fashion. In addition to the future directions and research needs mentioned elsewhere in this chapter, psychologists are well equipped to advance treatment development, for example, by attending to issues of treatment fidelity that will increase replicability and dissemination (Bellg et al., 2004). Self-management requires certain neurocognitive skills that have received little research attention. For example, is adherence with long-term control medications associated with better executive functions, such as sequencing and problem solving? Asthma disproportionately affects communities of color and disadvantaged persons; psychologists’ expertise in communitybased participatory research can help answer the call to merge the strengths of science with the strengths of the community (Bryant-Stephens, 2009) to engage the community in addressing health behavior and environmental problems that affect asthma.

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CHAPTER 6

Understanding and Managing Obesity JOYCE A. CORSICA AND MICHAEL G. PERRI

CLASSIFICATION OF OBESITY 128 EPIDEMIOLOGY OF OBESITY 129 CONSEQUENCES OF OBESITY 130 PSYCHOSOCIAL CONSEQUENCES OF OBESITY 131 ECONOMIC COSTS OF OBESITY 132 CONTRIBUTORS TO OBESITY 132 TREATMENT OF OBESITY 135 LIFESTYLE INTERVENTIONS 135 PHARMACOTHERAPY 136 BARIATRIC SURGERY 137

STRATEGIES TO IMPROVE LONG-TERM OUTCOME 138 STRATEGIES FOR MAINTAINING WEIGHT LOSS: FINDINGS FROM CORRELATIONAL STUDIES 139 STRATEGIES FOR MAINTAINING WEIGHT LOSS: FINDINGS FROM RANDOMIZED TRIALS 139 IMPROVING THE MANAGEMENT OF OBESITY 140 PREVENTION OF OBESITY 141 CONCLUSION 142 REFERENCES 143

Over the past two decades, the prevalence of overweight and obesity in the United States has increased dramatically. Approximately 68% of all Americans are now overweight or obese (Flegal, Carroll, Ogden, & Curtin, 2010). Concern about obesity’s epidemic-like trend stems from an overwhelming body of evidence demonstrating the negative health consequences associated with increased body weight. Being overweight or obese substantially raises the risk for a variety of illnesses, and excess weight is associated with increased all-cause mortality (Flegal, Graubard, Williamson, & Gail, 2007). Consequently, millions of Americans (including children) are poised to develop weight-related illnesses such as cardiovascular disease, hypertension, diabetes mellitus, and osteoarthritis. Moreover, obese adults age 50 to 71 have a risk of death 2 to 3 times higher than do normal-weight individuals of the same age (Adams et al., 2007). As the secondleading contributor to preventable death in the United States (Mokdad, Marks, Stroup, & Gerberding, 2004), obesity constitutes a major threat to public health and a significant challenge to health-care professionals.

with negative health consequences. An individual is considered obese when body fat content equals or exceeds 30 to 35% in women or 20 to 25% in men (Lohman, 2002). However, this simple definition obscures the complexities involved in the measurement and classification of body composition. Direct measurement of body fat can be accomplished through a variety of methods, including hydrostatic (underwater) weighing, skinfold measurement, bioelectrical impedance, dual energy x-ray absorptiometry (DEXA), and computerized tomography (CT). Direct measurement is typically either expensive (as is the case with DEXA and CT) or inconvenient (as is the case with hydrostatic weighing and skinfold measures). Consequently, for practical purposes, overweight and obesity are often defined in terms of the relationship of body weight to height. Body mass index (BMI) has gained general acceptance as the preferred method of gauging overweight. BMI is calculated by dividing weight in kilograms by the square of height in meters (kg/m2 ), by dividing pounds by inches2 × 704.5, or more easily by using an Internet calculator such as www.nhlbisupport.com/bmi/. BMI corresponds more closely to direct measures of body fat than alternative weight-to-height ratios (Keys, Fidanza, Karvonen, Kimura, & Taylor, 1972; L. Sj¨ostrom, Narbro, & Sj¨ostrom, 1995). The World Health Organization (WHO) categorizes overweight and obesity in adults according

CLASSIFICATION OF OBESITY Obesity is defined as an excessive accumulation of body fat—excessive to the extent that it is potentially associated 128

Understanding and Managing Obesity TABLE 6.1 World Health Organization Classification of Overweight According to BMI and Risk of Comorbidities Category

BMI (kg/m2 )

Disease Risk

Underweight Normal weight Overweight Pre-obese Obese Class I Obese Class II Obesity Class III

25.0 25.0–29.9 30.0–34.9 35.0–39.9 > 40.0

Low* Average Increased Moderate Severe Very severe

*Increased risk of other clinical problems (e.g., anorexia nervosa).

to BMI (WHO, 1998). In the WHO system, overweight is defined as a BMI ≥ 25, and obesity is defined as a BMI ≥ 30. This system employs six categories based on the known risk of comorbid medical conditions associated with different BMI levels (see Table 6.1). For example, the risk of comorbid conditions is considered average in the normal weight category and very severe in the obese class III category. The WHO classification system (also used by the National Heart, Lung, and Blood Institute [NHLBI], 1998) facilitates the identification of individuals and groups at increased risk of morbidity and mortality, and it allows meaningful comparisons of weight status within and between populations. BMI provides the most useful population-level measure of overweight and obesity, as it is the same for both sexes and for all ages of adults. However, it should be considered only a general guide because while it provides an acceptable approximation of total body fat for most people (NHLBI, 1998), it may not necessarily correspond to the same degree of “fatness” in different individuals (NHLBI, 2000). For example, it does not discriminate between weight associated with fat versus weight associated with muscle, so athletes and body builders may have a high BMI as a result of greater levels of muscle mass rather than excess fat. Given that the health risks associated with obesity vary according to the distribution of body fat (WHO, 1998), a much more significant concern is that one can be overfat even in the context of a healthy-appearing BMI. Therefore, waist circumference, rather than BMI (in those with BMI < 35; NHLBI, 2000), may be the best predictor of weight-related morbidity and mortality, since it directly measures central adiposity (Klein et al., 2007). A higher risk for metabolic syndrome, type 2 diabetes, and other cardiometabolic risk factors is associated with a waist circumference > 40 inches in men and > 35 inches in women and confers increased risk for morbidity and mortality (James, 1996; Janssen, Katzmarzyk, & Ross, 2004; NHLBI, 1998).

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EPIDEMIOLOGY OF OBESITY The majority (68%) of adults in the United States between the ages of 20 and 74 are overweight or obese (Flegal et al., 2010). Population surveys indicate that 32.2% of men and 35.5% of women in the United States are obese (i.e., BMI > 30), and an additional 40.1% of men and 28.6% of women are overweight (i.e., BMI of 25.0 to 29.9). Rates of obesity are highest among African American women (49.6%) and men (37.3%); Mexican American men have the highest rate of overweight (80%) and African American women have the highest rate of overweight (78.2%) (Flegal et al., 2010). Table 6.2 presents the current prevalence rates of overweight and obesity by gender and race/ethnicity. Socioeconomic and age-related differences in obesity rates are also evident in the population surveys. Women with lower income or lower levels of education are more likely to be obese than those of higher socioeconomic status, and obesity rates generally increase with age across all groups. In the most recent survey, obesity prevalence peaks at age 40 to 59 for women and at 60 or older for men (Flegal et al., 2010). Dating back to 1960, national surveys have assessed height and weight in large representative samples of the U.S. population. These data, from the National Health Examination Survey (NHES; Kuczmarski, Flegal, Campbell, & Johnson, 1994) and the National Health and Nutrition Examination Surveys (NHANES; Flegal, Carroll, Kuczmarski, & Johnson, 1998; Kuczmarski et al., 1994), allow a comprehensive examination of the changing rates of overweight and obesity over the past five decades. NHES evaluated data collected from 1960 to 1962 and reported TABLE 6.2 Prevalence of Overweight and Obesity by Gender and Race/Ethnicity BMI (Weight Category) 25.0–29.9 ≥ 30.0 ≥ 25.0 (Overweight) (Obese) (Overweight or Obese) Gender, Race/Ethnicity % % % Women White African American Hispanic* All Men White African American Hispanic* All

38.8 40.8 41.9 39.2

22.4 37.4 34.2 24.9

61.2 78.2 76.1 64.1

40.7 31.2 45.0 40.1

31.9 37.3 34.3 32.2

72.6 68.5 79.3 72.3

*All Hispanics, including Mexican Americans. Source: Data from NHANES 2007–2008 (Flegal et al., 2010).

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an overweight prevalence of 43.3% in adults. Nearly a decade later, the data from NHANES I, conducted in 1971 to 1974, indicated an overall prevalence of 46.1%, a level that remained relatively constant during the next decade, as reflected in the 46.0% prevalence observed in NHANES II, conducted in 1976 to 1980. The results of NHANES III, conducted in 1988 to 1994, revealed an alarming increase in the prevalence of overweight individuals to 54.9%. Particularly disturbing were the rates of obesity (BMI > 30), which increased 10% among women and 8% among men during the 14 years between NHANES II and III (Leigh, Fries, & Hubert, 1992). However, data from the most recent NHANES studies (Flegal et al., 2010) suggest that the increases in obesity prevalence appear to be slowing, particularly for women.





CONSEQUENCES OF OBESITY Obesity has a substantial adverse impact on health via its association with a number of serious illnesses and risk factors for disease. Obesity-related conditions include hypertension, dyslipidemia, type 2 diabetes mellitus, insulin resistance/metabolic syndrome, coronary heart disease (CHD), stroke, gallbladder disease, osteoarthritis, sleep apnea, respiratory problems, and cancers of the endometrium, breast, prostate, and colon. Some of the more prominent comorbidities of obesity are described next. • Type 2 diabetes. Data from international studies consistently show that obesity is a robust predictor of the development of type 2 diabetes (Folsom et al., 2000; Hodge, Dowse, Zimmet, & Collins, 1995; NHLBI, 1998). A 14-year prospective study concluded that obese women were at 40 times greater risk for developing diabetes than normal-weight, age-matched counterparts (Colditz et al., 1990). Estimates suggest that 27% of new cases of type 2 diabetes are attributable to weight gain of 5 kg or more in adulthood (Ford, Williamson, & Liu, 1997). While BMI is highly associated with type 2 diabetes, waist circumference (indicative of abdominal obesity) is the more robust predictor of diabetes (Carey et al., 1997). • Insulin resistance. Recent research has focused greater attention on insulin resistance, the condition in which ample insulin is secreted but does not function well in admitting blood sugar into the cells. This results in high levels of circulating insulin. Insulin resistance is now thought to be the key contributor to the development of cardiovascular disease (McLaughlin, Abbasi, Lamendola, & Reaven, 2007). Insulin resistance is specifically





associated with abdominal obesity and is implicated in diabetes, sleep apnea, and various cancers. Importantly, insulin resistance typically predates diabetes by about 10 years. Insulin resistance is likely to warrant much greater attention in the next few years. Metabolic syndrome. Also referred to as dysmetabolic syndrome and syndrome X, metabolic syndrome refers to a constellation of measurements (high waist circumference, low HDL, high triglycerides, and elevated glucose) that reflects insulin resistance and has central adiposity as a key component (Bray, 2007). Metabolic syndrome is highly associated with cardiovascular disease (McLaughlin et al., 2007). Coronary heart disease (CHD). Overweight, obesity, and abdominal adiposity are associated with increased morbidity and mortality due to CHD. These conditions are directly related to elevated levels of cholesterol, blood pressure, and insulin, all of which are specific risk factors for cardiovascular disease. Studies suggest that, compared to a BMI in the normal range, the relative risk for CHD is twice as high at a BMI of 25 to 29 and 3 times as high for BMI > 29 (Willett et al., 1995). Moreover, weight gain of 5 to 8 kg increases CHD risk by 25% (NHLBI, 1998; Willett et al., 1995). Insulin resistance and metabolic syndrome increase the risk of cardiovascular disease substantially (McLaughlin et al., 2007). Stroke. The Framingham Heart Study (Hubert, Feinleib, McNamara, & Castelli, 1983) suggested that overweight may contribute to stroke risk, independent of hypertension and diabetes. Later research established that the relationship between obesity and stroke is clear for ischemic stroke versus hemorrhagic stroke (Rexrode et al., 1997). Prospective studies show a graduated increase in risk for ischemic stroke with increasing BMI (i.e., risk is 75% higher with BMIs > 27; 137% higher with BMIs > 32) (Rexrode et al., 1997). Obstructive sleep apnea (OSA). OSA is a serious and potentially life-threatening breathing disorder, characterized by temporary cessation of breathing that results in repeated arousals from sleep. Both the presence and severity of OSA are associated with obesity, and OSA occurs disproportionately in people with BMI > 30 (Loube, Loube, & Miller, 1994). The prevalence of OSA among obese patients exceeds 30% and reaches as high as 50–98% in the morbidly obese population. While large neck circumference (≥ 17 inches in men and ≥ 16 inches in women) was previously considered highly predictive of sleep apnea, more recent studies have found that waist circumference may be a better

Understanding and Managing Obesity

predictor of sleep apnea than either BMI or neck circumference (Davidson & Patel, 2008; Seidell, 2010). • Women’s reproductive health. Menstrual irregularity and amenorrhea are observed with greater frequency in overweight and obese women. Polycystic ovary syndrome, which often includes infertility, menstrual disturbances, hirsutism, and anovulation, is associated with abdominal obesity, hyperinsulinemia, and insulin resistance (Broekmans & Fauser, 2006; Goudas & Dumesic, 1997). Not only does obesity aggravate the onset and progression of some illnesses, it also shortens life (Allison, Fontaine, Manson, Stevens, & Van Itallie, 1999). Studies show that all-cause mortality rates increase by 50% to 100% when BMI is equal to or greater than 30 as compared with BMIs in the normal range (Troiano, Frongillo, Sobal, & Levitsky, 1996). Indeed, as many as 365,000 deaths per year in the United States are attributable to obesity-related causes (Mokdad et al., 2004).

PSYCHOSOCIAL CONSEQUENCES OF OBESITY Many obese people experience social discrimination and psychological distress as a consequence of their weight. The social consequences associated with obesity include bias, stigmatization, and discrimination, consequences that can be highly detrimental to psychological well-being (Stunkard & Sobal, 1995). Social bias results from the widespread, but mistaken, belief that overweight people lack self-control. Negative attitudes toward obese people, which are pervasive in our society, have been reported in children as well as adults, in health-care professionals as well as the general public, and in overweight individuals themselves (Crandall & Biernat, 1990; Rand & Macgregor, 1990). An obese person is less likely to get into a prestigious college, to get a job, to marry, and to be treated respectfully by a physician than is his or her nonobese counterpart (Gortmaker, Must, Perrin, Sobol, & Dietz, 1993; Pingitore, Dugoni, Tindale, & Spring, 1994). Evidence from self-report data, surveys, and laboratory research shows weight bias in numerous aspects of work life, ranging from initial hiring to professional success. Obese individuals are at higher risk of encountering stereotypes concerning their work-related qualities and for general unequal treatment in the work place (Giel, Thiel, Teufel, Mayer, & Zipfel, 2010). On a positive note, there may be a trend toward improvement in health-care provider attitudes, as a recent review of 15 studies of different

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health-care providers indicated that attitudes toward overweight patients, although primarily still negative, have improved over time (Budd, Mariotti, Graff, & Falkenstein, 2009). Still, obesity may well be the last socially acceptable form of widespread prejudice and discrimination in our country. Despite the negative social consequences of being overweight, most early studies reported similar rates of psychopathology in obese and nonobese individuals. However, these studies suffered from a number of limitations, including failing to account for gender effects (Wadden, Womble, Stunkard, & Anderson, 2002). At least two studies have found an association between obesity and depression in women only. One large-scale, general-population study (Carpenter, Hasin, Allison, & Faith, 2000) found that in women, obesity was associated with 37% greater risk of major depressive disorder, as well as increased suicidal ideation and suicide attempts. Interestingly, however, in men, obesity was associated with a reduced risk of major depression. The authors attributed these findings to the greater stigmatization of obese women in our society and to a tendency for obese women to respond to negative emotions by eating. However, binge eating, which is a frequent mediator of obesity and depression (Didie & Fitzgibbon, 2005; Telch & Stice, 1998), was not accounted for in this study, making it unclear whether binge eating and/or other factors might account for higher levels of depressive symptoms in obese women, rather than obesity itself. A later analysis of NHANES III data suggested that in women, depression was most associated with a severe degree of obesity. In lower categories of obesity, however, findings were more heterogeneous (Onyike, Crum, Lee, Lyketsos, & Eaton, 2003). Higher rates of body image dissatisfaction are consistently reported by obese individuals. Body image dissatisfaction is particularly elevated among women of higher socioeconomic status, those who were overweight as children, and binge eaters (French, Jeffery, Sherwood, & Neumark-Sztainer, 1999; Grilo, Wilfley, Brownell, & Rodin, 1994). In contrast, members of certain minority groups, particularly Hispanic and African Americans, are less likely to display disparaging attitudes toward obesity in either themselves or others (Crandall & Martinez, 1996; Kumanyika, 1987; Rucker & Cash, 1992). In fact, African American women often ascribe positive attributes such as stamina and authority to being larger (Rosen & Gross, 1987), although more recent evidence suggests that this pattern is changing (Roberts et al., 2006). Nonetheless, it is worth noting that the greater acceptance of heavier body types in some ethnic groups may contribute to obesity

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Understanding the factors that contribute to the development of obesity may lead to effective interventions for its control and prevention. In this section, we address genetic and environmental contributors to overweight and obesity.

findings have led researchers to suspect that a single major, but as yet unidentified, recessive gene accounts for a significant proportion of the variance in body mass (Bouchard, Perusse, Rice, & Rao, 1998). In addition, researchers also believe that body fat distribution, resting metabolic rate, and weight gain in response to overconsumption are each controlled by genetic factors that may interact to predispose certain individuals to obesity (Bosy-Westphal et al., 2008; Chagnon, Perusse, Weisnagel, Rankinen, & Bouchard, 2000; Feitosa et al., 2000; Levin, 2000). Among the first genetic defects linked to obesity was the discovery of the ob gene and its protein product leptin (Zhang et al., 1994). Leptin, a hormone produced by fat cells, is a long-term regulator of energy balance. Low levels of leptin signal low fat stores and encourage energy intake, and high levels signal adequate or excess fat stores and discourage energy intake. Most obese individuals have high levels of leptin due to higher levels of adipose tissue, yet energy intake is clearly not discouraged (Considine et al., 1996). This led to the concept of leptin resistance, wherein high leptin levels are not recognized by the brain (Ahima & Flier, 2000; M¨unzberg & Myers, 2005). Animal models suggest that this may be caused by overfeeding of fat calories, which overload the endoplasmic reticulum and cause leptin resistance (Ozcan et al., 2009). Leptin resistance would promote hunger and satiety levels more consistent with starvation than with excess adipose tissue. Researchers are now testing chemical messengers that appear to chaperone leptin into the brain, which may resensitize the brain to the effects of leptin (Ozcan et al., 2009). Several other single-gene defects contribute to obesity in animals (Collier et al., 2000; Levin, 2000). However, only one of these mutations appears to be a frequent contributor to human obesity. Investigators (Farooqi et al., 2000; Vaisse et al., 2000) have found that 4% of morbidly obese individuals display a genetic mutation in the melanocortin-4 receptor (MC4), which plays a key role in the hypothalamic control of food intake. Research into the MC4 receptor and other potential genetic causes of obesity continues at a rapid pace (Comuzzie & Allison, 1998; Speliotes et al., 2010).

Genetic Contributors

Environmental Contributors

Familial studies consistently have shown that BMI is highly correlated among first-degree relatives (Bouchard, Perusse, Leblanc, Tremblay, & Theriault, 1988), and investigations of identical twins reared apart suggest that the genetic contribution to BMI may be as high as 70% (Stunkard, Harris, Pedersen, & McClearn, 1990). Such

Environmental factors are clearly the primary determinants of human obesity (Brownell, 2010; Poston & Foreyt, 1999). The influence of environmental factors can be seen in comparing groups that share the same genetic heritage but live in environments that support very different lifestyles. The Pima Indians of Arizona, who live in a

and its adverse medical consequences (Ruiz, Pepper, & Wilfley, 2003). In contrast to studies of obese persons in the general population, research on psychological disturbance in people presenting for treatment at obesity clinics shows a clear pattern of results. Obese help-seekers display higher rates of both psychological distress and binge eating than normal-weight individuals and obese persons who are not seeking help (Didie & Fitzgibbon, 2005; Fitzgibbon, Stolley, & Kirschenbaum, 1993; Spitzer et al., 1993).

ECONOMIC COSTS OF OBESITY The economic impact of obesity is enormous. In 2009, the health cost of obesity in the United States was estimated to be as high as $147 billion annually (Finkelstein, Trogdon, Cohen, & Dietz, 2009). This total can be further examined in terms of direct and indirect costs. Direct costs (i.e., dollars expended in medical care due to obesity) amount to approximately $51.6 billion and represent 5.7% of national health expenditures in the United States. The indirect costs (i.e., lost productivity due to morbidity and mortality from diseases associated with obesity) amount to an additional $47.6 billion. On an individual level, persons who are obese spend approximately $1,429 (42%) more for medical care annually than nonobese persons. In addition, consumers are estimated to spend in excess of $60 billion annually for weight-loss interventions, exercise programs, weight-control books, and diet foods and beverages (Marketdata, 2010). Researchers estimate that the overall economic impact of obesity may now exceed that of cigarette smoking (Jia & Lubetkin, 2010).

CONTRIBUTORS TO OBESITY

Understanding and Managing Obesity

“modern” environment, have the highest prevalence of obesity of any ethnic/racial group in the United States (Krosnick, 2000). However, the prevalence of obesity in the Pima Indians of rural Mexico is less than half that of their Arizona counterparts. Although the two groups share the same genetic makeup, they differ dramatically in their lifestyles. The Pimas in rural Mexico consume a diet with less animal fat and more complex carbohydrates, and they expend a greater amount of energy in physical labor than do their cousins in Arizona (Ravussin, Valencia, Esparza, Bennett, & Schultz, 1994). Thus, environments that foster appropriate food consumption and energy expenditure can limit the development of obesity, even in the presence of a strong genetic predisposition. Alternatively, environments that offer unlimited access to high-calorie foods and simultaneously support low levels of physical activity can promote obesity even in the absence of a specific genetic predisposition. As several authors (Hill & Peters, 1998; Poston & Foreyt, 1999) have noted, the human gene pool has not changed significantly in the past quarter century. Consequently, the increased prevalence of obesity in the United States and other Western countries appears to be due to the influence of environmental factors on energy consumption and/or energy expenditure. Are Americans Eating More Food and/or Taking in More Calories? Early research on changes in energy intake trends was inconclusive (CDC, 1994; Ernst, Sempos, Briefel, & Clark, 1997; Nestle & Woteki, 1999; Norris et al., 1997), possibly as a result of response bias or methodological problems. Therefore, researchers turned to data from food supply and disappearance studies to understand whether people were eating more and found that per capita energy availability increased by 15% between 1970 and 1994 (Harnack, Jeffery, & Boutelle, 2000), an amount sufficient to help explain the increased prevalence of overweight in the United States. However, national survey data now make clear that Americans are eating more calories. In 2000, men on average consumed 168 more calories per day and women consumed 335 more calories per day than in 1971 (CDC, 2004). Such energy increases, if not compensated for by increased metabolic or physical activity, have the potential to produce substantial increases in body weight. A Toxic Environment It is clear that Americans are surrounded by an environment that promotes the overconsumption of energy-dense,

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nutrient-poor food (Battle & Brownell, 1996; Kant, 2000). The temptation to eat is virtually everywhere. Highly palatable, high-calorie, low-cost items are readily available not only at fast-food restaurants but also in supermarkets, food courts, vending machines, and 24-hour service stations. In addition, larger portion sizes, “value meals,” and two-for-one deals all provide opportunities for excess consumption. Children are drinking more sugar-sweetened beverages than ever before (Nielsen & Popkin, 2004). And with Americans eating more meals outside the home, they are consuming larger portions of food. In the early 1970s, about 20% of the household food dollar was spent on food outside the home, and by 1995, that amount had doubled to 40% (Putnam & Allshouse, 1996). Currently, the U.S. Department of Agriculture’s Economic Research Service (USDA ERS, 2004) reports that Americans now spend nearly half of their food dollars away from home—the highest percentage on record. Importantly, eating away from home, particularly at fast-food restaurants, is associated with higher energy and higher fat intake (French, Harnack, & Jeffery, 2000). Thus, it is not surprising that studies have shown eating out to be a significant contributor to weight gain, insulin resistance, and the increasing prevalence of overweight (Binkley, Eales, & Jekanowski, 2000; McCrory et al., 1999; Pereira et al., 2005). Physical inactivity also appears to be a significant contributor to overweight and obesity. Compared with three decades ago, fewer occupations now require vigorous levels of physical activity. Moreover, labor-saving devices such as cars, elevators, escalators, motorized walkways, and remote controls have had a significant cumulative impact in decreasing daily energy expenditure (Hill, Wyatt, & Melanson, 2000; James, 1995). At the same time, energy expended in leisure activities has decreased as people spend more time sitting passively in front of computers, DVD players, and TV sets rather than participating in physical activities that require movement and greater amounts of energy expenditure. According to the Surgeon General (U.S. Department of Health and Human Services, 2007), 40% of the U.S. population does not engage in any leisuretime physical activity, and fewer than 30% of Americans engage in the recommended amounts of physical activity (at least 30 minutes most days). Cross-sectional population studies typically show an inverse relationship between physical activity and body weight (DiPietro, 1995). Lower body weights and lower BMIs are associated with higher levels of self-reported physical activity. The findings appear strongest for highintensity physical activities (presumably due to more accurate reporting of vigorous activities such as jogging).

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However, in cross-sectional studies, it is sometimes difficult to determine the direction of cause-and-effect relationships. While physical activity may affect body weight, it is also likely that body weight affects physical activity via increased discomfort associated with higher body weight, including higher levels of breathlessness and sweating, and general difficulty in negotiating body movement. Many obese individuals also report embarrassment at being seen exercising (Ball, Crawford, & Owen, 2000). Longitudinal cohort studies may provide a better perspective on the relationship between physical activity and body weight. For example, in the Male Health Professionals Study, Coakley and colleagues (1998) examined the impact of changes in activity on body weight in a prospective cohort study of 19,478 men. The researchers found that over the course of a 4-year period, vigorous activity was associated with weight reduction, whereas sedentary behavior (e.g., TV viewing) and eating between meals were associated with weight gain. Men who increased their exercise, decreased TV viewing, and stopped eating between meals, lost an average weight of 1.4 kg, compared to a weight gain of 1.4 kg among the overall population. Furthermore, the prevalence of obesity was lowest among men who maintained a relatively high level of vigorous physical activity, compared to those who were relatively sedentary. These data show that increased physical activity may prevent weight gain. Effect of Medications on Obesity Status The impact of medication-induced weight gain on obesity is clear (Cheskin et al., 1999; Schwartz, Nihalani, Jindal, Virk, & Jones, 2004), and some experts have hypothesized that as much as 5 to 10% of the obesity epidemic may be caused by medications people are taking (Aronne, Nelinson, & Lillo, 2009). The worst offenders appear to be antipsychotics, antidepressants, and diabetes drugs, particularly insulin (Cheskin et al, 1999). Although the mechanism for medication-induced weight gain is not entirely clear, in many agents, it appears related to a powerful antihistamine effect; because the histamine receptor mechanism is central in the body weight regulation pathway, weight gain is likely a direct effect of histaminic activity through its impact on both metabolic efficiency and appetite (Aronne et al., 2009). Do Social Networks Promote Obesity? Data from the Framingham Heart Study (Christakis & Fowler, 2007) suggest that the prevalence of obesity may

be related in part to perception of social norms regarding body size. In this study, the weight status of more than 12,000 people was assessed regularly between 1971 and 2003. The analysis revealed that among married couples, if one spouse became obese, the likelihood of the other becoming obese was 37%. Moreover, a person’s chance of becoming obese increased by 57% if he or she had a friend who became obese during a given interval. These data have prompted some (Aronne et al., 2009) to hypothesize a contagion effect for body size. If the majority of one’s peers are overweight or obese, the perceived norm for excessive body weight may be adjusted upward. As a consequence, an individual’s motivation to maintain a lower body weight may be diminished. An Evolutionary Advantage Backfires By fostering decreased energy expenditure and increased energy consumption, modern environments have promoted increases in body weights and in the prevalence of obesity (Brownell, 2010). There is a significant mismatch between modern lifestyle and the lifestyles for which humans (and our genes) evolved over tens of thousands of years (Eaton & Konner, 1985). This discordance has produced diseases of civilization, as typified by the current epidemic of obesity. Prior to the past century, periodic shortages of food plagued most societies, and obesity was rarely a problem. From an evolutionary perspective, the scarcity of food acted as an agent of natural selection. Because body fat serves primarily as a reserve source of energy, genetic traits that contribute to the accumulation of fat stores served an adaptive role by enhancing the chances of survival in times of scarcity. In modern societies, there are no intervals of scarcity to periodically reduce the buildup of body fat. As a result, the constant and abundant supply of food, coupled with lower levels of physical activity and energy expenditure, has led to dramatic increases in the prevalence of overweight and obesity. So, as George Bray has stated, “genetics load the gun; environment pulls the trigger” (Bray, 2007). Is Obesity a Mental Disorder? Many people believe that obesity is synonymous with an eating disorder, such as binge eating disorder, or is representative of a psychological or mental disorder. Research findings do not support the framing of obesity as an eating or psychological disorder (Volkow & O’Brien, 2007). However, obesity and binge eating disorder (BED) often coexist. The percentage of obese individuals who

Understanding and Managing Obesity

suffer from BED varies, depending on the nature of the sample and the method of diagnosing BED, as demonstrated by the wide range of binge eating rates found in research studies. Prevalence rates range from 2 to 3% in normal-weight community samples, and in obesity treatment studies range from 1.3 to 30% (Dingemans, Bruna, & van Furth, 2002); however, 10% to 25% of participants report some binge eating behaviors but do not meet full criteria for the disorder. In bariatric surgery samples, it appears that the prevalence of BED is 25% to 30% (Niego, Kofman, Weiss, & Geliebter, 2007). It bears noting that people with BED are not always overweight: In a review of community- and clinic-based studies, Didie and Fitzgibbon (2005) found that approximately 50% of the individuals diagnosed with BED were not overweight, although it is possible or even likely they may become so later (Hasler et al., 2004).

TREATMENT OF OBESITY National surveys indicate that substantial numbers of Americans are trying to lose weight. A recent Gallup poll (Gallup, 2010) suggests that over half (57%) of Americans would like to lose weight and that about 27% are making a serious attempt to do so. Most try to lose weight on their own; only approximately 7% use commercial programs (Paeratakul, York-Crowe, Williamson, Ryan, & Bray, 2002). For those who opt for professional treatment, currently available alternatives are lifestyle interventions (typically a combination of behavior therapy, low-calorie diet, and exercise) and more aggressive interventions, including pharmacotherapy and surgery.

LIFESTYLE INTERVENTIONS Behavior modification procedures have become the foundation of lifestyle interventions for weight loss. Participants in behavioral treatment are taught to modify their eating and exercise habits to produce weight loss through a negative energy balance. The key components typically used in behavioral interventions include (a) goal setting and daily self-monitoring of eating and physical activity; (b) nutritional training aimed at the consumption of a balanceddeficit, low-calorie diet sufficient to produce a weight loss of 0.5 kg per week (it bears noting that rather than reducing dietary fat alone, reducing carbohydrates and overall calories provides more favorable results [Shai et al., 2008]); (c) increased physical activity through the development

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of a walking program and/or increased lifestyle activities; (d) arrangement of environmental cues and behavioral reinforcers to support changes in eating and exercise behaviors; (e) cognitive restructuring techniques to identify and change negative thoughts and feelings that interfere with weight-loss progress; and (f) training in problem solving or relapse prevention procedures to enhance coping with setbacks and obstacles to progress. More than 150 studies have examined the effects of behavioral treatment of obesity. Reviews of randomized trials conducted since 1985 (Foster, Makris & Bailer, 2005; Jeffery et al., 2000; NHLBI, 1998) show consistent findings. Behavioral treatments (typically delivered in 16 to 24 weekly group sessions) produce mean weight loss of approximately 8.5 kg and 9% reduction in body weight. Attrition rates are relatively low, averaging about 20% over 6 months. Negative side effects are uncommon, and participants typically report decreases in depressive symptoms. In addition, beneficial changes in blood pressure, glucose tolerance, and lipid profiles typically accompany weight reductions of the magnitude produced by behavioral treatment (Blackburn, 2002; NHLBI, 1998). Two long-term, large-scale randomized clinical trials have demonstrated that lifestyle interventions can prevent the onset of obesity-related disease in high-risk populations and result in significant improvement in risk factors and fitness. The Diabetes Prevention Program (DPP; Diabetes Prevention Program Research Group, 2002) randomized over 3,000 adults at high risk for diabetes to an intensive lifestyle intervention, metformin, or placebo over a 3-year period. The two major goals of the lifestyle intervention were a minimum of 7% weight loss/weight maintenance and a minimum of 150 min of physical activity similar in intensity to brisk walking. The intensive lifestyle intervention included a 16-session core curriculum that taught behavioral self-management strategies for weight loss and physical activity and also individual lifestyle coaches, supervised physical activity sessions, and an individualized toolbox of adherence strategies. Fifty percent of participants achieved the goal of at least 7% weight loss at the end of the 24-week intervention; average weight loss was 5.6 kg in the lifestyle intervention, 2.1 kg in the metformin group, and 0.1 kg in the placebo group. Diabetes incidence rates were reduced by 58% in the intensive lifestyle intervention, compared to 31% with metformin. At 10-year follow-up, the cumulative incidence of diabetes remained lower in the lifestyle group compared to metformin and placebo groups (34% reduction in diabetes incidence versus 18% in metformin), demonstrating the long-term effectiveness of lifestyle interventions

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compared with medication (DPP Research Group, 2009). The Look AHEAD trial (Look AHEAD Research Group, 2010) examined the effects of an intensive lifestyle intervention on changes in weight, fitness, and CVD risk factors over 4 years in patients with type 2 diabetes. Over 5,000 patients were randomized to a lifestyle intervention or diabetes education control condition. The lifestyle intervention, while using many components of the lifestyle intervention in the DPP, was somewhat more intensive and included portion-controlled meals and extended contacts through all 4 years. The lifestyle intervention yielded a significantly greater percentage of weight loss (6.15% versus 0.88%) and greater improvements in treadmill fitness and CVD risk factors (hemoglobin A1c level, blood pressure, and high-density lipoprotein cholesterol and triglycerides). Whether these differences in risk factors translate to reduction in actual CVD events will be later addressed by the Look AHEAD trial. The long-term effectiveness of lifestyle interventions has remained an area of considerable concern. During the year following behavioral treatment, participants typically regain 30 to 40% of their lost weight (Jeffery et al., 2000; Wadden & Foster, 2000). Perri and Corsica (2002) summarized the results of behavioral treatment studies with follow-ups of 2 or more years and found a reliable pattern of gradual weight regain during the years following behavioral treatment. Several considerations must be taken into account in evaluating the long-term results of weight-loss interventions. Findings of small net losses at long-term follow-up need to be viewed in the context of what might have happened had the obese individual never entered treatment. Secular trends clearly show that the natural course of obesity in untreated adults entails steady weight gain. Hence, long-term findings that show the maintenance of small amounts of weight loss may represent relatively favorable outcomes. In addition, mean weight changes provide only a partial view of the long-term outcome. A deeper perspective may be gleaned from an examination of categories of partial success. For example, Kramer, Jeffery, Forster, and Snell (1989) reported an overall mean weight loss of 2.7 kg at 4.5-year follow-up. However, an analysis by categories of relative success revealed that approximately 20% of the subjects maintained losses of 5 kg or more, suggesting a notable degree of success for a significant number of individuals. PHARMACOTHERAPY The promise of safe and effective medications for the management of obesity has remained largely unfilled. At

the current time, the only medication approved for longterm obesity treatment is orlistat. Orlistat (marketed by prescription as Xenical and available over-the-counter at half-strength under the name Alli) is a gastric and pancreatic lipase inhibitor (Roche Laboratories, 1999–2000) that works by preventing the digestion and absorption of up to 30% of dietary fat. Weight loss with orlistat ranges from 5% to 10% over 1 year (Finer et al., 2000; Hauptman et al., 2000). In a large-scale, randomized controlled trial (Davidson et al., 1999), treatment with diet plus orlistat (120 mg, three times a day) for 2 years produced a 7.6% weight loss, while treatment with diet plus placebo resulted in a 4.2% reduction. Maximum weight loss with orlistat typically occurs after 8 to 12 months of treatment, and 25% to 30% of the weight lost during the first year is regained during the following year, despite continued treatment (Davidson et al., 1999; L. Sj¨ostrom et al., 1998). Nonetheless, weight loss after 2 years of treatment with diet plus orlistat remains significantly greater than treatment with diet plus placebo (Davidson et al., 1999). And when used following a period of low-calorie dieting, orlistat reduces the regaining of weight lost (Hill et al., 1999). Finally, combining lifestyle modification with orlistat has been shown in the XENDOS study to reduce the risk of developing diabetes in obese patients by over 37% compared with lifestyle changes alone (Torgerson, Hauptman, Boldrin, & Sj¨ostrom, 2004). The major side effects of orlistat, reported by 20% to 50% of users, include loose stools with oily discharge, abdominal pain, increased defecation, and fecal incontinence (Roche Laboratories, 1999–2000). The consumption of excessive dietary fat increases the risk of side effects; thus, in addition to inhibiting fat absorption, these side effects may condition patients to limit their intake of dietary fats or even educate them that a meal is higher in fat than imagined. Anecdotally, some patients report that they learn to avoid unpleasant side effects by not taking the medication when they have consumed high-fat foods, thus negating the effects of the drug. A legitimate concern centers around the use of drugs to treat obesity, independent of significant lifestyle changes. Many patients, and some practitioners, may rely on medication as the sole element of obesity management, an approach likely to result in a disappointing outcome. The benefits of weight-loss medications are enhanced when drug treatment serves as one component in a comprehensive treatment regimen that includes lifestyle modification (Wadden, Berkowitz, Sarwer, Prus-Wisniewski, & Steinberg, 2001). For this reason, pharmacotherapy for weight loss should be used as only one aspect of a comprehensive

Understanding and Managing Obesity

strategy that includes behavioral therapy, dietary changes, and increased physical activity (NHLBI, 2000).

BARIATRIC SURGERY Class III or severe obesity (BMI > 40) confers an extremely high risk for morbidity and decreased longevity. With a prevalence of 7.2% among women and 4.2% among men, severe obesity affects approximately 18 million Americans (Flegal et al., 2010). Because lifestyle and pharmacological interventions produce very limited benefits for severely obese patients, bariatric surgery remains the treatment of choice. The major types of bariatric surgery currently available are gastroplasty, adjustable laparoscopic gastric banding, vertical sleeve gastrectomy, and gastric bypass. In the oldest of the procedures, vertical banded gastroplasty (VBG, also known as “stomach stapling”), the stomach is stapled vertically to create a small pouch. This gastric pouch limits the amount of food that can be ingested in a single eating period to about 15 cc. A small ring placed at the outlet of the pouch slows the rate at which food passes through the remainder of the stomach and into the small intestine. Gastroplasty (or any restrictive surgical procedure for obesity) exerts a regulatory effect on eating behavior through both early satiety and aversive conditioning. The perception of fullness associated with the distention of the stomach pouch serves as a cue to stop eating. Fear of vomiting provides a disincentive for overeating, as eating more than the small amount of solid food that the stomach pouch can accommodate typically results in regurgitation. One difficulty with gastroplasty is that it does not limit the consumption of high-calorie liquids or soft foods (particularly foods that melt), such as ice cream or crackers. As a result, poor outcome attributable to “soft calorie syndrome” may be high (Hsu et al., 1998). An additional problem with gastroplasty is that over time the size of the pouch may expand, accommodating more food and thereby limiting its long-term effectiveness. The two newer restrictive procedures are adjustable gastric banding and vertical sleeve gastrectomy. Laparoscopic adjustable gastric banding (LAGB, also known as Lap-Band™) has been used extensively in Europe and has become increasingly popular in the United States. In LAGB, a hollow silicone band is placed around the upper part of the stomach, creating a small top pouch with a narrow outlet that slows emptying into the remainder of the stomach. The band is filled with saline solution and can be adjusted (through a port) to meet the weight loss needs of

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the patient. As a purely restrictive and minimally invasive procedure, gastric banding carries fewer risks for surgical complications than gastric bypass, and the procedure is commonly performed without the need for overnight hospitalization. However, as with other forms of gastroplasty, it does not feature a mechanism to deter the eating of calorically dense high-sugar or high-fat foods. Gastric banding appears to be less effective in terms of weight loss and maintenance of weight lost than gastric bypass and may be less effective for those patients with disordered eating patterns (Poole et al., 2004). As in VGB, maladaptive eating behaviors, including soft calorie syndrome, can contribute to weight gain. To complicate matters, highly refined foods (e.g., ice cream, cheese) tend to be easier for the LAGB patient to eat, as they pass easily through the narrow outlet from the pouch, while high-fiber, more nutritious foods such as fruit and vegetables are more difficult to tolerate. Vertical sleeve gastrectomy (SG), the newest obesity surgery procedure, is still considered experimental by some surgeons and insurance companies. However, it is gaining wider acceptance due to its low risk profile and greater weight losses than other restrictive procedures. Sleeve gastrectomy removes 75% to 85% of the stomach without bypassing the intestines. A purely restrictive procedure, it is currently indicated as an alternative to laparoscopic gastric banding for lower weight individuals and as a safe option for higher weight individuals. The stomach that remains is shaped like a very slim banana and measures from 30 to 150 cc (1 to 5 ounces). The nerves to the stomach and the outlet valve (pylorus) remain intact to preserve the functions of the stomach while drastically reducing the volume. SG is a significant improvement over prior gastroplasty procedures for a number of reasons (Moy, Pomp, Dakin, Parikh, & Gagner, 2008). The removed portion of the stomach is responsible for secreting ghrelin, the hormone responsible for appetite and hunger. By removing this portion of the stomach, the level of ghrelin is reduced to near zero, causing loss of or reduction in appetite (Langer et al., 2005). Currently, it is not known if ghrelin levels increase again after 1 to 2 years, although there are some indications that food cravings are fewer in SG than in lap band patients (Himpens, Dapri, & Cadiere, 2006), which may account for the superior weight loss in SG. In addition, the long vertical tube-shaped stomach that remains is the portion least likely to expand over time, and it creates significant resistance to volumes of food. The result is that appetite is reduced, and very small amounts of food generate early and lasting satiety. Compared to gastric bypass, SG has a lower risk of complications, including

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vitamin and protein deficiency, marginal ulcer, and intestinal obstruction. Outcome weight loss data suggest that SG is superior to gastric banding in terms of both excess weight loss (57% versus 41%) and reductions in hunger at 3 years (Himpens et al., 2006) and is comparable to gastric bypass at 2 and 5 years (Lee, Cirangle, & Jossart, 2007). The gold standard for obesity surgery remains Roux-enY gastric bypass. In this procedure, a small gastric pouch is created via stapling, and a limb of the jejunum is attached directly to the pouch. Ingested food bypasses 90% of the stomach, the duodenum, and a small portion of the proximal jejunum (Kral, 1995). Surgery facilitates weight loss in three ways: (1) The pouch can hold only a small amount of food (15 ml), and overfilling the pouch results in regurgitation; (2) the emptying of partially digested food from the pouch into the small intestine results in malabsorption, such that a portion of nutrients (and calories) are not absorbed; and (3) the consumption of sweets and foods containing refined sugar produces dumping syndrome, a constellation of aversive consequences including nausea, light-headedness, sweating, palpitations, and gastrointestinal distress. Because it produces superior weight-loss outcome, gastric bypass is the preferred type of bariatric surgery (Balsiger, Murr, Poggio, & Sarr, 2000). Glenny, O’Meara, Melville, Sheldon, and Wilson (1997) reviewed seven studies that compared gastric bypass with gastroplasty. Six of the seven showed significantly greater weight loss favoring the gastric bypass procedure. Typical weight loss 1 year after gastric bypass ranged from 45 to 65 kg compared to 30 to 35 kg after gastroplasty. Similar findings have been obtained in a large-scale trial of bariatric surgery in Sweden (C. Sj¨ostrom, Lissner, Wedel, & Sj¨ostrom, 1999). Patients who received gastric bypass had a 33% reduction in body weight at 2 years compared to 23% for patients with gastroplasty. Long-term studies show some regaining of weight (e.g., 5 to 7 kg over 5 years), but gastric bypass patients typically maintain 80% to 90% of their initial (i.e., first year) weight losses (Balsiger et al., 2000). A 15-year follow-up of patients in the Swedish Obesity Study (SOS) compared those who had gastric bypass, gastric banding, or vertical gastrectomy (L. Sj¨ostrom et al., 2007). Those who had gastric banding and gastroplasty lost about 15% of their weight and were able to maintain about a 15% weight loss after 15 years. Gastric bypass, however, resulted in significantly greater weight loss of about 30% at 15 years. Gastric bypass reduces or eliminates the major comorbid conditions experienced by severely obese patients. Buchwald and colleagues (2004) reported in a large

meta-analysis that patients lost between 62 and 75% of excess weight and showed improvements in many metabolic conditions. Type 2 diabetes remission was 76.8% and significantly improved in 86% of patients, hypertension was eliminated in 61.7% and was significantly improved in 78.5% of patients, high cholesterol was reduced in more than 70% of patients, and sleep apnea was eliminated in 85.7% of patients. Joint disease, asthma, and infertility were also dramatically improved or resolved. Bariatric surgery also appears to prevent the development of serious diseases that commonly occur in morbidly obese patients, as documented by a 14-fold reduction in the risk for diabetes, and a three- to fourfold reduction in risk for hypertension (L. Sj¨ostrom et al., 1995). Significant improvements in body image and quality of life routinely accompany the large weight losses achieved by bariatric surgery patients (NIH, 1992; Sarwer et al., 2010). Bariatric surgery involves both significantly greater risks and greater benefits than other obesity treatments. The risks associated with surgery can include postoperative complications, micronutrient deficiencies, and late postoperative depression (NIH, 1992). Among surgeons and centers experienced in these surgical procedures, mortality associated with bariatric surgery is approximately 0.2 to 0.5% (American Society of Metabolic and Bariatric Surgery [ASMBS], 2010; L. Sj¨ostrom et al., 1995). The benefits of bariatric surgery must be considered in light of these risks, which are considerably higher in nonexpert surgery centers (ASMBS, 2010).

STRATEGIES TO IMPROVE LONG-TERM OUTCOME With the exception of surgery, virtually all treatments for obesity show limited long-term effectiveness. Indeed, after reviewing the outcome of all nonsurgical treatments of obesity, the Institute of Medicine (Thomas, 1995) concluded that “those who complete weight-loss programs lose approximately 10% of their body weight, only to regain two thirds of it back within 1 year and almost all of it back within 5 years” (p. 1). What accounts for such disappointing outcomes? Poor maintenance of weight loss seems to stem from a complex interaction of physiological, environmental, and psychological factors. We now know that profound metabolic and hormonal changes occur as individuals lose weight, including increased hunger, decreased satiety, and slowing metabolic rate (Goldsmith et al., 2010). Reduced metabolic rate (Dulloo & Jacquet, 1998; Ravussin &

Understanding and Managing Obesity

Swinburn, 1993), adaptive thermogenesis (Leibel, Rosenbaum, & Hirsch, 1995; Stock, 1999), increased adipose tissue lipoprotein lipase activity (Kern, 1997; Kern, Ong, Saffari, & Carty, 1990), and changes in leptin and ghrelin (Aronne et al., 2009) prime the dieter to regain lost weight. At the same time, continuous exposure to an environment rich in palatable high-fat, high-calorie foods (Hill & Peters, 1998), combined with a dieting-induced heightened sensitivity to palatable foods (Rodin, Schank, & Striegel-Moore, 1989), further predisposes the individual to setbacks in dietary control. This challenging combination of physiological and environmental barriers makes long-term weight loss success an exceptionally difficult proposition. Thus, it is not surprising and perhaps even expected that most overweight individuals experience difficulties after the completion of weight-loss treatment. In addition, from the patient’s viewpoint, the most rewarding aspect of treatment (losing weight) usually ends with the termination of the intervention. As a result, many patients perceive a high behavioral cost associated with continued efforts at weight control, precisely at the same time they are experiencing diminished benefits in terms of little or no additional weight loss. Regaining weight often leads to attributions of personal ineffectiveness that can trigger negative emotions, a sense of hopelessness, and eventual abandonment of the weight-control effort (Goodrick, Raynaud, Pace, & Foreyt, 1992; Jeffery, French, & Schmid, 1990).

STRATEGIES FOR MAINTAINING WEIGHT LOSS: FINDINGS FROM CORRELATIONAL STUDIES The Weight Control Registry (NWCR) was established in 1993 to examine characteristics of successful weight-loss maintainers. The NWCR includes over 5,000 members who have lost an average of 66 lb (range 30 to 300 lb) and kept it off for 5.5 years (range 1–66). Just over half (55%) lost weight with the help of some type of program, 98% modified their food intake in some way to lose weight, and 94% increased their physical activity, with walking the most frequently reported form of activity. According to registry data (Wing & Phelan, 2005), successful maintainers report continuing to maintain a low-calorie, low-fat diet and endorse high levels of activity, about one hour per day (reported by 90% of successful maintainers). More than 75% eat breakfast every day and weigh themselves at least once a week, and 62% watch less than 10 hours of TV per week. While we stress that these data

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are correlational, they do shed some light on successful maintenance practices. STRATEGIES FOR MAINTAINING WEIGHT LOSS: FINDINGS FROM RANDOMIZED TRIALS Researchers have examined a wide array of strategies with the goal of improving long-term outcome in obesity treatment. These include very low-calorie diets, extended duration of treatment, skills training, peer support, exercise and physical activity, and multicomponent posttreatment programs. In the following sections, we review the effectiveness of these approaches in improving long-term outcome. Very-Low-Calorie Diets If obese patients lose larger amounts of weight during initial treatment, will they keep off more weight in the long run? Investigations of very-low-calorie-diets (VLCDs) provide a partial answer to this question. VLCDs are portion-controlled, very low-energy ( 2 years ≤ 2 years > 2 years ≤ 2 years > 2 years

6 2 6 3 10 5

1190 1557 2042 2761 3232 4318

1.01 (0.46–2.23) 1.30 (0.95–1.79) 0.73 (0.51–1.05) 0.83 (0.67–1.03) 0.77 (0.56–1.07) 0.96 (0.80–1.15)

58.8 (0.06) 25.0 (0.25) 17.5 (0.30) 0.0 (0.94) 49.7 (0.46) 46.8 (0.02)

4 1 6 3 10

1121 1084 2023 1914 3144

0.88 (0.67–1.15) 1.01 (0.80–1.29) 0.84 (0.64–1.11) 0.82 (0.68–0.99) 0.86 (0.71–1.04)

0.0 (0.61) 0.0 (1.00) 32.2 (0.19) 2.0 (0.36) 2.0 (0.18)

≤ 2 years

14

8522

0.87 (0.66–1.15)

37.5 (0.08)

11

6432

0.80 (0.61–1.04)

62.5 (0.003)

> 2 years ≤ 2 years

5 6

4527 639

0.95 (0.75–1.20) 0.28 (0.12–0.70)

31.1 (0.21) 0.0 (0.98)

4 7

5616 659

0.63 (0.39–1.03) 0.94 (0.61–1.46)

73.6 (0.010) 0.0 (0.64)

≤ 2 years ≤ 2 years

3 4

754 603

0.46 (0.28–0.75) 0.67 (0.27–1.66)

0.0 (0.53) 0.0 (0.71)

3

687

0.79 (0.57–1.08)

0.0 (0.38)

≤ 2 years ≤ 2 years

3 6

1071 4173

1.03 (0.78–1.36) 1.04 (0.79–1.37)

0.0 (0.65) 2.0 (0.40)

4 5

1274 3946

0.93 (0.74–1.18) 0.92 (0.76–1.12)

0.0 (0.51) 0.0 (0.49)

Odds ratio < 1 indicate a reduction in mortality/morbidity due to psychological treatment. K, number of studies included in analysis; N, sample size; OR, odds ratio; P, level of significance; CI, confidence interval; I2, homogeneity of variance statistic; ellipse, insufficient data to complete analysis. aNo data for > 2 years.

Figure 15.4

Odds ratios for mortality and morbidity outcomes: psychological treatment versus usual care

Source: From “Psychological Treatment of Cardiac Patients: A Meta-Analysis,” by W. Linden, M. J. Phillips, and J. Leclerc, 2007, European Heart Journal, 28, 2972–2984. Reprinted with permission.

fewer wall motion abnormalities, and greater improvements in flow-mediated dilation compared to usual care. Smoking Cessation Interventions Cigarette smoking is still common in societies worldwide, and a large body of evidence indicates that chronic cigarette smoking may affect the structure and function of the cardiovascular system. Chronic cigarette use has been found to play a pathogenic role in the induction and progression of cardiovascular disorders, including cardiomyopathy and peripheral vascular disease. Cigarette use induces hardening of the arteries, HTN, coronary spasms, ischemia, and cardiac arrhythmias (Balakumar & Kaur, 2009). Although the deleterious effects of cigarette use on the heart are widely known, many cardiac patients continue cigarette use after a coronary event. Smoking cessation greatly improves prognosis after a cardiac event. In fact, total mortality can be reduced by 36% with smoking cessation, a reduction comparable to established secondary

prevention therapies (Critchley & Capewell, 2003). Smoking cessation is notoriously difficult, however. Studies suggest that fewer than 10% of individuals are able to quit smoking on their own (Gaemperli, Liga, Bhamra-Azira, & Rimoldi, 2010), and optimal treatment programs (including medication and counseling) in the general population generally have a 25% cessation success rate at 12-month follow-up (Tonnesen, 2009). Among cardiac patients, psychoeducational approaches to smoking cessation appear to be effective, as reflected in a systematic review of 14 randomized controlled trials reflecting significant reductions in smoking across interventions (Huttunen-Lenz, Song, & Poland, 2010). These interventions were relatively brief in duration (generally 20 to 60 minutes) with common factors being addressed, including: motivation, goal setting, self-efficacy beliefs, knowledge, and behavioral skills. Other brief interventions have been less successful. Hajek, Taylor, and Mills (2002) compared usual care with a nurse-led smoking cessation intervention delivered on hospital wards among 540 smokers admitted to the

Coronary Heart Disease and Hypertension

hospital post-MI or post-CABG patients who expressed interest in cessation. The intervention lasted 20 to 30 minutes and consisted of a carbon monoxide reading, intervention booklet, quiz, declaration of commitment to cessation, and contact with other patients who were discontinuing their cigarette use. Follow-up measures were assessed at 6 weeks and 12 months by self-report and biochemical validation. After 6 weeks, 59% of the control group and 60% of the intervention group reported abstinence, and after 1 year 41% of the control group and 37% of the intervention group had maintained cessation. High motivation and low dependence on tobacco predicted positive outcomes in both conditions. The negative results of this trial indicate the need for improved, substantial interventions targeting patients who are at higher risk of continued smoking. Bolman, de Vries, and van Breukelen (2002) found similar outcomes with a minimal contact intervention. Stop-smoking-advice from a cardiologist and receiving self-help materials and nurse counseling produced short-term cessation, but effects disappeared at 1 year follow-up. A recent review of psychosocial interventions for smoking cessation with CHD patients revealed that smoking cessation interventions are effective in promoting abstinence up to 1 year if the intervention is of sufficient intensity (e.g., appropriate length of sessions, home assignments, and contact) and lasts a minimum of 1 month (Barth, Critchley, & Bengel, 2006). Cardiac Rehabilitation Cardiac rehabilitation (CR) is intended to improve physical and psychological functioning, as well as to slow or reverse disease progression among patients diagnosed with cardiac disease. Patients with CVD are referred to exercise-based CR, usually for 36 sessions (three times a week for 12 weeks). Exercise is monitored, and participants are instructed to maintain exercise heart rates at established levels (usually 70 to 85% of maximum heart rate). CR programs typically include medical evaluation, lifestyle education, and physical activity training (Mayo Clinic, 2009) and specifically aim to manage lipids, HTN, diabetes, and psychosocial stress, as well as promote smoking cessation, weight reduction, and increased exercise capacity (Ades, 2001). There is substantial evidence demonstrating the positive effects of CR. Wenger and colleagues (1995) found that CR had a positive effect on disease-related symptoms, exercise habits, smoking, BP, psychological well-being, and social functioning. They also found that individuals who completed CR increased treadmill tolerance by

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30 to 50% and oxygen consumption (VO2 max) by 15 to 20%. In a systematic review of randomized clinical trials examining rehabilitation programs for patients with CVD, McAlister, Lawson, Teo, and Armstrong (2001) found that patients involved in CR showed improved processes of care (e.g., lower risk-factor profiles), fewer hospital admissions, and enhanced quality of life in comparison to control groups. In addition to improved physical outcomes, studies have shown reduced depression and anxiety among individuals who complete CR (Lavie & Milani, 2004; Yohannes, Doherty, Bundy, & Yalfani, 2010). Lavie and Milani (2005) also found reduced hostility following CR. Although research has demonstrated many benefits of CR, there are low attendance and high dropout rates among patients with CVD (Butler, Furber, Phongsavan, Mark, & Bauman, 2009; Chang, Ford, Meoni, Wang, & Kag, 2002; Daly et al., 2002). Adherence Individuals with CVD are most often provided with lifestyle management, education, and numerous medications. Research has demonstrated that psychosocial factors (e.g., depression, anxiety) are important in treatment adherence and often covary with medical treatment adherence, which can hasten disease progression among patients with CVD (Frasure-Smith, Lesp´erance, & Talajic, 1995; Williams & Littman, 1996). Poor adherence is not limited to medical treatments. Low accrual and inadequate adherence also exist in CR and behavioral interventions (Butler et al., 2009). In a study of 212 cardiac patients participating in a behavioral intervention utilizing pedometer monitoring, behavior counseling, and goal-setting exercises, 90 (42%) refused randomization, and 32 of the remaining 122 (26%) did not complete the intervention (Butler et al., 2009). Participants cited work commitments and medical problems as primary barriers to study adherence. Although long-term adherence has not been extensively studied, Twardella and colleagues (2006) conducted a 3year follow-up of 1,200 CVD patients participating in CR. According to self-report data, 31% were maintaining a “good” diet before CR, 91% during CR, 49% 1 year after CR, and 42% 3 years after CR. This demonstrates the difficulty in facilitating a positive level of dietary and physical lifestyle change following CR. Cooper, Lloyd, Weinman, and Jackson (1999) found that among 137 CVD patients intending to participate in CR, only 55 (40%) attended any CR sessions. Older age, less knowledge of cholesterol levels, and a perception of

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less control over the illness were significant predictors of nonattendance. King, Humen, Smith, Phan, and Teo (2001) found that older age, higher BMI, and lower selfefficacy expectation of health maintenance were significant predictors of reduced CR attendance. Practical as well as emotional barriers exist to enrolling in and completing psychological/behavioral interventions. Studies have shown that depression is associated with poorer compliance to medical treatment and health behavior change (Maguire, Hughes, & McElnay, 2008; Wang et al., 2002). Among 560 acute coronary syndrome patients, depression was associated with lower rates of exercise and smoking cessation, as well as poorer CR attendance (Kronish, Rieckmackmann, & Halm, 2006). Glazer, Emery, Frid, and Banyasz (2002) found that depressive symptoms among CR patients predicted higher dropout rates. Patients often report low motivation, engagement in concurrent exercise programs or efforts, and/or lack of time as common reasons for CR dropout or lack of adherence. Practical barriers such as work and financial concerns (including inadequate insurance coverage) also have been reported (Evenson & Fleury, 2000).

HYPERTENSION AND RISK FACTORS Essential hypertension is defined as persistent elevated BP (SBP > 140 mm/Hg and DBP > 90 mm/Hg) with no apparent underlying cause. Although past studies reported essential hypertensive patients to account for 95% of all hypertensive cases, new studies reveal that other types of HTN, such as primary aldosteronism, may account for up to 8% of hypertensive cases, leaving essential HTN to account for a smaller proportion of hypertensive cases than during previous decades (Funder, 2008). HTN is the leading cause of cardiovascular death among men and women (August & Oparil, 1999). There are approximately 72 million Americans with HTN. HTN is strongly associated with stroke and renal failure. In addition, population-based studies have shown that HTN increases risk for CVD by 2 to 3 times (Padwal, Straus, & McAlister, 2001). HTN is the cause of up to 35% of atherosclerotic cardiovascular events, as well as 49% of heart failure cases (Kannel, 1996; Levy, Larson, Vasan, Kannel, & Ho, 1996). Demographic disparities exist among those with HTN and hypertensive symptoms, with age being a primary risk factor for HTN. HTN prevalence is 7.3% among those age 18 to 39, 32.6% among those age 40 to 59, and 66.3% for those over the age of 60 (Ong, Cheung, Man, Lau, & Lam, 2007). Historically, women have been largely ignored in

the HTN literature due to the greater overall incidence of HTN in men. The sex disparity is greatly reduced after women reach the age of menopause because of the absence of the protective effects of estrogen. Over the past decade, studies have increasingly focused on HTN in women. Ong and colleagues (2007) demonstrated that among all U.S. racial/ethnic groups, prevalence of HTN was higher among women after age 60 but higher among men prior to age 60. However, a study of 1,432 Dutch men and women found a lower age-adjusted rate of HTN in women than in men (OR = 0.35) and that men had higher rates of HTN in every age group (Agyemang, de Munter, van Valkengoed, van den Born, & Stronks, 2008). Data also suggest that individuals who self-identify as racial/ethnic minorities experience higher rates of HTN. Ostchega, Hughes, Wright, McDowell, & Louis (2008) found greater risk of HTN among Blacks than among Whites (OR = 1.40). In the past, rates of HTN among Hispanics were thought to be comparable to non-Hispanic Whites, but rates have been increasing among Mexican Americans. In addition, Mexican American women have increased risk of stroke at a younger age than non-Hispanic women (Lisabeth, Smith, Brown, & Sanchez, 2008), which is attributed to an increased prevalence of HTN and diabetes among Mexican American women. In addition to demographic risk factors for HTN, there are a number of behavioral and psychosocial risk factors, such as stress, anxiety, depression, obesity, smoking, and alcohol consumption, that have been documented in the research literature. Mental Stress Studies suggest that racial discrimination may be associated with elevated BP levels among minority individuals, but there are equivocal data regarding the association of racism and HTN. In the Black Women’s Health Study (Cozier et al., 2006), racism and HTN were evaluated prospectively in a large cohort (N = 2,316) of Black women over 4 years. Although there was not an overall relationship between exposure to racism and HTN, experiences of racism in interpersonal interactions were associated with HTN among Black women born outside the United States. Many studies have shown that occupational stress leads to increases in BP and rates of HTN (Guimont et al., 2006; Markovitz, Matthews, Whooley, Lewis, & Greenlund, 2004; Tobe et al., 2007). In a meta-analysis including four studies using the Job Content Questionnaire to assess occupational stress, Sparrenberger and colleagues (2009)

Coronary Heart Disease and Hypertension

found that three of four studies reported a significant association between occupational stress and HTN risk. Levenstein, Smith, and Kaplan (2001) found greater risk of HTN among individuals who were worried about keeping their jobs (i.e., endorsed “worried about keeping the job” and “average or not good at doing the job”). Markovitz and colleagues (2004) found that job strain predicted HTN incidence at 8-year follow-up among 3,200 healthy workers in the Coronary Artery Risk Development in Young Adults (CARDIA) study. Guimont and colleagues (2006) found that job strain predicted increased BP at 7.5-year follow-up, with stronger effects among workers with less social support, in a Canadian sample of 8,395 white-collar workers. Social support serves as a moderator of the relationship between stress and BP; thus, it has been suggested that social support may be relevant to HTN. Studies have shown that isolation and loneliness can lead to increases in BP (Hawkley, Masi, Berry, & Cacioppo, 2006), and marriage appears to have a long-term positive impact on BP (Holt-Lunstad, Birmingham, & Jones, 2008). However, acute marital conflict may have a negative effect on BP, as documented by Nealey-Moore, Smith, Uchino, Hawkins, and Olson-Cerny (2007), who examined reactivity to positive and negative marital discussions among 114 couples. Results indicated that acute episodes of marital conflict produced significantly elevated BP. Other studies have shown that relationships buffer the impact of stress on hypertensive symptoms among those who report having “high-quality” relationships, while the association may be exacerbated among those reporting “low-quality” relationships (Baker et al., 2000; Grewen, Girdler, Amico, et al., 2005). Stress due to low SES and racial discrimination also may affect HTN outcomes. A number of epidemiologic studies have shown an association between low SES and increased risk of HTN (Adler & Ostrove, 1999; Conen, Glynn, Ridker, Buring, & Albert, 2009). Research has also shown that SES may moderate the relationship between occupational stress and increased BP. Among male workers of various income levels, job strain appears to increase BP significantly more for low-SES jobs (e.g., service laborer, repair) than for high-SES jobs (e.g., managerial, professional specialty; Landsbergis, Schnall, Pickering, Warren & Schwartz, 2003). It is important to note that other variables may be involved in this relationship and serve as moderators or mediators. According to Spruill (2010), the underlying mechanisms responsible for this relationship are poorer health behaviors, greater exposure to stressful events, and fewer resources to cope with stress.

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Although studies have shown a consistent relationship of chronic stress with HTN, the effects of acute stress are less clear. In a recent meta-analysis (Sparrenberger et al., 2009), only one study reported an association of acute stress with HTN, specifically among parents whose children had been involved in traumatic burn incidents (Figure 15.5). It is difficult to distinguish acute stressors from chronic stressors because of the longterm impact that acute stressors may cause (Sparrenberger et al., 2009). For example, parents of burn victims may have been exposed to long-term caregiving stressors as a result of their child’s trauma. Overall, data from this meta-analysis suggested that chronic stress, but not acute stress, was associated with increased risk of HTN, especially in the presence of strong affective response to stress. Results have been equivocal regarding the link between stress reactivity and HTN, likely due to variability of stressor types (e.g., cold pressor, treadmill exercise) and lack of distinction between study type (e.g., prospective, retrospective). Kasagi, Akahoshi, and Shimaoka (1995) found that greater stress reactivity to a cold pressor was predictive of future HTN, but Carroll, Smith, Sheffield, Shipley, and Marmot (1995) found stress reactivity to a cold pressor did not predict HTN at follow-up. Although there may be an association between greater stress reactivity and future HTN, studies have failed to consistently replicate the effect, and many factors moderate this relationship (Bedi, Varshney, & Babbar, 2000). Anxiety and Depression Anxiety and depression have been associated with development of HTN. Several studies have found positive relationships between anxiety and HTN (H¨arter, Conway, & Merikangas, 2003; Paterniti et al., 1999; Wei & Wang, 2006), but other studies have found no significant associations (Shinn, Poston, Kimball, St. Jeor, & Foreyt, 2001; Yan et al., 2003). Johannessen, Strudsholm, Foldager, and Munk-Jørgensen (2006) extracted data on over 14,000 anxiety patients, compared to over 60,000 matched healthy control subjects, and found an elevated incidence of 1.96 for HTN among anxiety patients. The authors postulate that the relationship is likely due to a chronic arousal that may increase catecholamine levels in patients. It is possible that mixed findings are due to confounding variables such as chronic physical symptoms. Although Grimsrud, Stein, Seedat, Williams, and Myer (2009) found an association between self-reported HTN and higher rates of 12-month anxiety disorders

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Diseases and Disorders Study (n) Case-control

OR

CI 95%

Acute Radi 20058

0.37

(0.20-0.67)

(170 womens) 0.32

(0.12-0.89)

(395 men)

Chronic Schnall 199018

(196)

3.09

(1.30-7.30)

Radi 20058

(395 men)

2.60

(1.15-5.85)

(170 womens) 3.20

(0.92-11.12)

(456)

5.02

(2.25-11.19)

(361)

10.10

(3.03-33.72)

Perini 199115

(121)

1.00

Dorn 200716

(1880)

1.48

Kahn 197220

(9586)

1.62

Levenstein 200112

(2357)

1.30

(1.00-1.60) (0.31-0.74)

Affective response Perez 200111 EI-Shafei

200222 Cohort

Acute

(1.09-2.02)

Chronic

200110

(941)

0.48

Fauvel 200317

(274)

0.84

Markovitz 200414

(3200)

2.06

Sparrow 198213

(1166)

1.00

Everson 200021

(616)

3.22

(1.56-6.67)

Cozier 20069

(30330)

1.20

(1.00-1.30)

Nakanishi

(1.01-4.26)

Affective response

Odds ratio

0.5

1.0

2.0

4.0

8.0

16.0

Figure 15.5 Odds ratio (OR) for hypertension by different criteria of the definition of stress; a summary of case-control and cohort studies; studies presenting only the point estimate did not have confidence intervals reported by the authors; the ORs for the studies of Perini et al. and Sparrow et al. were assumed as one, as the authors reported just the absence of a significant association. Source: From “Does Psychosocial Stress Cause Hypertension? A Systematic Review of Observational Studies,” by F. Sparrenberger, F. T. Cichelero, A. M. Ascoli, F. P. Fonseca, G. Weiss, O. Berwanger, S. C. Fuchs, L. B. Moreira, and F. D. Fuchs, 2009, Journal of Human Hypertension, 23, 12–19. Reprinted with permission.

(OR = 1.55), there was no significant association after adjusting for other chronic physical disorders. The authors concluded that other chronic conditions are responsible for a large portion of the variance in the association between HTN and anxiety. Comorbidity of mood disorders is another topic of interest in research on HTN. In a cross-sectional study of 4,180 U.S. Army soldiers, Carroll, Phillips, Gale, and Batty (2010) found GAD and MDD to be positively related to HTN after controlling for age, ethnicity, marital status, alcohol consumption, smoking, education, and BMI. Further, they found HTN rates were highest among soldiers with both GAD and MDD. Studies of the relationship between depression and HTN also have produced mixed results. A number of cohort and cross-sectional studies (Davidson, Jonas, Dixon, &

Markovitz, 2000; Gaynes, Burns, Tweed, & Erickson, 2002) have found associations between depression and HTN, but other studies have found no significant relationship (Jones-Webb, Jacobs, Flack, & Liu, 1996; Yan et al., 2003). In a cross-sectional study of 1,174 randomly selected men and women, Wiehe and colleagues (2006) found that HTN was not related to lifetime history of major depressive episodes after controlling for age, race, education, BMI, and alcohol consumption. They also reported that SBP and DBP were similar among depressed and nondepressed participants. The authors suggest that the positive associations observed in other studies are due to heightened adrenergic activity, unhealthy lifestyle, and poor treatment compliance among depressed individuals.

Coronary Heart Disease and Hypertension

Obesity Data from the National Health and Nutrition Surveys (NHANES) revealed that more than 50% of hypertensive individuals are obese, contrasting with obesity rates of approximately 25% among nonhypertensive adults. Specifically, 46.9% of hypertensive men and 56.4% of hypertensive women were categorized as obese, reflected by higher mean BMI and mean waist circumference (Ford, Zhao, Li, Pearson, & Mokdad, 2008). In a telephone survey of more than 195,000 subjects, Mokdad and colleagues (2003) found that, compared with adults of normal weight, respondents with a BMI between 35 and 39.9 (Class 2 obesity) had an OR of 3.5 for high BP, while those with a BMI of > 40 (Class 3 obesity) had an OR of 6.38 for high BP, after adjusting for age, education, smoking, gender, and race. Carlson, W¨andell, de Faire, and Hell´enius (2008) found that waist circumference above 95 cm among men and above 88.5 cm among women predicted newly diagnosed elevated BP. Although hypertensive patients did not differ from nonhypertensive patients in weekly intake of fruits, legumes, or eggs, nonhypertensive patients were significantly more likely to consume both nonoily and oily fish on a weekly basis (p < .05). Smoking and Alcohol Consumption Smoking has long been identified as a risk factor for HTN, but research has produced mixed results. Several studies have reported that smoking acutely lowers BP (Imamura et al., 1996; Wang et al., 2006), but others have reported opposite findings (Bolinder & de Faire, 1998). Most studies examining this relationship have not included long-term follow-ups and have not controlled for confounding factors. Dochi and colleagues (2009) assessed 8,251 male steel workers over 14 years and found that smoking was an independent risk factor for HTN after adjusting for age, BMI, job type, cholesterol, exercise, and drinking. Odds ratios of smoking were elevated for individuals with both diastolic and systolic HTN (OR = 1.13; p < .01) and for individuals with systolic HTN only (OR = 1.15; p < .01) but not for individuals with diastolic HTN only. In the past few decades, the association between alcohol use and HTN has been documented in both men and women, various racial/ethnic groups, and across all adult age groups. Studies indicate greater HTN prevalence with increased alcohol consumption (Chobanian et al., 2003; Puddey & Beilin, 2006). Although Carlsson and colleagues (2008) found that high alcohol consumption

355

OR HTN (>140 or 90 mmHg)

Never

Exdrinker

1 drink per month but < 1 drink per day; 1-2 drinks per day; and > 3 drinks per day. Logistic regression models, separate for men (light gray) and women (dark gray), were controlled for age, ethnicity, body mass index, education, and smoking. HTN = hypertension; OR = odds ratio.

Figure 15.6 ORs (95% confidence intervals) for HTN (defined as BP ≥ 90 mmHg diastolic) in men and women among 127,212 persons (56,211 men and 71,101 women) Source: From “Alcohol and Hypertension: A Review,” by A. L. Klatsky and E. Gunderson, 2008, Journal of the American Society of Hypertension, 2 , 307–317. Reprinted with permission.

(>30 g/day) is associated with increased risk of HTN, recent studies have shown an association between light to moderate alcohol use and a reduced risk of HTN (Malinski, Sesso, Lopez-Jimenez, Buring, & Gaziano, 2004). In a review of studies examining the relationship between alcohol consumption and BP, Klatsky and Gunderson (2008) found the highest levels of BP among those who consumed the most alcohol, but many studies showed little or no increase in BP associated with light to moderate alcohol consumption (Figure 15.6). The International Study of Salt and Blood Pressure (INTERSALT) examined the influence of alcohol on more than 10,000 men and women and found that alcohol use became strongly linked to HTN when consumption was greater than three to four drinks per day (Marmot et al., 1994. Klatsky (2004) found that those who consistently consumed alcohol separately from meals had a 64% greater risk of developing HTN due to increased absorption and metabolism of alcohol without food interaction.

TREATMENT OF HYPERTENSION The most common treatments for hypertension include health behavior change (e.g., exercise, diet) and medication.

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Diseases and Disorders

Prevention Strategies According to Kaplan (2004), there are six primary approaches to preventing HTN: maintenance of normal body weight, performing moderate physical activity, limiting alcohol consumption, reducing sodium intake, maintaining adequate potassium intake, and maintaining low-fat diets rich in fruits and vegetables. HTN prevention is not well established in the literature and may require a population-based approach with a strategy targeted toward those at high risk for HTN to conclusively demonstrate prevention effectiveness (Kaplan, 2004). Treatment for HTN includes reducing BP to an ideal value of 120/80 mmHg, with particular attention to values below 140/90 mmHg to prevent arterial damage (Chobanian et al., 2003). Medications such as thiazide diuretics, angiotensin converting enzyme (ACE) inhibitors, betablockers, and calcium channel blockers are among those commonly prescribed to treat HTN (Mayo Foundation, 2011). In addition, lifestyle changes such as implementing healthier diet, increasing exercise activity, and initiating smoking cessation are also prescribed for patients with HTN. It is commonly believed that medications cannot help patients achieve ideal BP unless accompanied by lifestyle changes (Mayo Foundation, 2011). Interventions The association between physical activity and reduced BP has been well established (Arroll & Beaglehole, 1992; Fagard, 1993). A meta-analysis of 54 randomized clinical trials examining the effect of aerobic exercise on BP indicated that aerobic exercise interventions were associated with significant net reductions of SBP (−3.84 mm/Hg) and DBP (−2.58 mm/Hg; Whelton, Chin, Xin, & He, 2002). BP was reduced in all groups, including hypertensive and normotensive participants, as well as both overweight and normal-weight study participants. Diet and weight loss are other key lifestyle components for treating HTN. A review of six studies examining the effect of weight loss interventions on HTN symptoms found significant reductions in SBP (−21 mm/Hg) and DBP (−13 mm/Hg; Hovell, 1982). Intervention studies have demonstrated BP reductions associated with short-term weight loss (Neter, Stam, Kok, Grobbee, & Geleijnse, 2003; Sj¨ostr¨om, Lissner, Wedel, & Sj¨ostr¨om, 1999), although long-term weight loss interventions have resulted in mixed outcomes. A systematic review of 16 studies (8 clinical trials and 8 cohort studies) examining the impact of long-term (>2 years) weight loss on BP among individuals with a BMI < 35 kg/m2 participating in lifestyle interventions (i.e., dietary, exercise,

behavioral, environmental) reported a significant relationship between long-term weight loss and SBP reduction, but not DBP (Aucott et al., 2005). It was concluded that this may be due to the small weight loss achieved among normal weight ( 25) (Kahrilas, 2008). Restrictive dietary guidelines are suggested to limit foods that contribute to reduced LES pressure and those foods that are considered irritants (with high acidic content, e.g., citrus fruits, tomatoes, onions). Other notable irritants may include carbonated beverages, spicy foods, high-fat or fried foods, caffeine, chocolate, and mints (Kahrilas, 2008). Other recommendations are to limit food consumptions (>3 hours) before bed, elevating the head over the waistline while lying down, consuming smaller but more frequent meals throughout the day, and avoiding tight-fitting clothing around waistline. Strong evidence supports the role of weight loss and head of bed elevation, with less evidence supporting the role of smoking cessation, alcohol, or other dietary restrictions (Kaltenbach, Crockett, & Gerson, 2006). Functional Esophageal Disorders Functional esophageal disorders are similar to IBS in that they are not evidenced by any organic pathology. Although a definitive etiology of the functional esophageal disorders is unknown, research supports the presence of abnormal sensory perception, which plays a role in the onset and maintenance of symptoms (Galmiche et al., 2006). Functional esophageal disorders can be diagnosed through a combination of upper endoscopy, manometry, a failed response to PPI therapy, and pH monitoring (see Lacy et al., 2010, for a comprehensive overview). Validated symptom questionnaires such as the GERDQ (R. Jones et al., 2009) are also available but have limited precision, in part because of the wide variation in symptom presentation, the frequency of extraesophageal manifestations, and cross-cultural differences in the reporting of

Gastrointestinal Diseases

heartburn (Lacy, 2010). Three functional esophageal disorders are most commonly encountered in psychological practice: globus, functional dysphagia, and functional heartburn. Globus is the sensation of a lump in the throat and has also been described as a “feeling of something stuck in the throat,” “discomfort/irritation in the throat,” and “wanting to swallow all the time” (Deary, Wilson, Harris, & MacDougall, 1995a). Historically a frustrating and difficult symptom to treat, globus sensation has been resistant to antacid therapy or any other therapies (Deary, 1995). Explanation and reassurance can be beneficial because of the benign nature of the syndrome, but, to date, there are no medications that reduce symptoms (Galmiche et al., 2006). Functional dysphagia, “the sensation of abnormal bolus transit” down the esophagus (Galmiche et al., 2006), is notoriously difficult to treat and often leads to frustration and fear of choking, which in turn leads to food avoidance and psychological distress. The Mayo Dysphagia Questionnaire–30 has been recently validated for use in this condition (McElhiney et al., 2010). Medical management may include reassurance from a physician, avoidance of precipitating factors, careful chewing of food, and addressing any psychological distress that seems relevant to symptom production (Galmiche et al., 2006). Functional heartburn, defined by Rome II as burning, retrosternal discomfort or pain in the absence of GERD or other histopathology, is one of the most common esophageal motility disorders (Longstreth et al., 2006). Functional heartburn is diagnosed only after a complete physiologic workup with negative findings on endoscopy, normal acid exposure time, symptom-reflux discordance, and lack of response to PPI therapy (Galmiche et al., 2006). As is often the case in IBS, 75% of patients with functional heartburn demonstrate hypersensitivity on esophageal balloon distension (Nasr, Attaluri, Hashmi, Gregersen, & Rao, 2010). They also evidence reduced thresholds for perception, discomfort, and pain when compared to controls (Nasr et al., 2010). Visceral sensitivity and somatization (McDonald-Haile, Bradley, Bailey, Schan, & Richter, 1994) have also been identified in this population. Treatment options for this group are quite limited; however, it has been suggested that those with functional heartburn may respond to low-dose tricyclic antidepressants, other antidepressants, or psychological therapies targeting hypersensitivity and hyperawareness of esophageal sensations (Galmiche, Clouse, Balint, et al., 2006). Noncardiac chest pain (NCCP), which is diagnosed after an extensive negative cardiac workup, differs only

375

slightly from functional heartburn in that burning is not typically reported. Rather, patients typically report extreme pressure (like an elephant on my chest) behind the breastbone that, similar to angina, radiates outward to the neck and extremities; these symptoms often trigger an emergency room visit because patients fear they are having a heart attack (Eslick, 2005). This fear often drives continued symptom generation and health-care use, even after diagnosis of noncardiac chest pain has been confirmed. Psychological Considerations and Management While somewhat scant, previous research has demonstrated that psychological factors play a role in the manifestation of esophageal symptoms, regardless of etiology. For example, there is a relationship between psychological distress and the onset of reflux (Baker, Lieberman, & Oehlke, 1995; K. J. Lee, Kwon, Cheong, & Cho, 2009; Y. C. Lee et al., 2006), dysphagia (Kim, Hsu, Williams, Weaver, & Zinsmeister, 1996), and globus (Cook, Dent, & Collins, 1989; Deary, Wilson, & Kelly, 1995b), as well as an unclear interaction between stress and esophageal symptoms more generally (Harris, Deary, & Wilson, 1996). Similar to IBS, depression, somatization, anxiety, and neuroticism are present in a significant subset of patients, regardless of organic or functional etiology (Kim et al., 1996; Rey et al., 2009; van der Velden, de Wit, Quartero, Grobbee, & Numans, 2008). The Cardiac Anxiety Questionnaire is a particularly useful questionnaire to get at anxiety associated with noncardiac chest pain (Eifert et al., 2010). Among the psychological interventions explored in other GI disorders, hypnotherapy has demonstrated the most efficacy in esophageal disorders, including functional dyspepsia (Calvert, Houghton, Cooper, Morris, & Whorwell, 2002), noncardiac chest pain (H. Jones, Cooper, Miller, Brooks, & Whorwell, 2006; V. Miller, Jones, & Whorwell, 2007; Palsson & Whitehead, 2006; Whorwell, 1990), and globus sensation (Kiebles, Kwiatek, Pandolfino, Kahrilas, & Keefer, 2010). Prior to the widespread availability of PPIs, there were also a handful of studies that focused on hypnotherapy in acid peptic disorders with modest effects in modulating gastric acid secretion (Klein & Spiegel, 1989) and gastric emptying time (Chiarioni, Vantini, De Iorio, & Benini, 2006). More recently, hypnotherapy has been shown to modulate reflux symptoms by reducing anxiety, body vigilance, and visceral sensitivity (McDonald-Haile et al., 1994). A recent Cochrane review on noncardiac chest pain suggested modest benefit for pain and quality of life

376

Diseases and Disorders

from psychological interventions, particularly CBT (Kisely, Campbell, Skerritt, & Yelland, 2010; van PeskiOosterbaan, Spinhoven, Van der Does, Bruschke, & Rooijmans, 1999a; van Peski-Oosterbaan et al., 1999b). One of the most elegant randomized controlled trials in this population was a comparison of noncardiac chest pain with the SSRI paroxetine, also an efficacious therapy for this group, possibly because of its known effects on panic and anxiety. CBT featured skills to reduce heart-focused anxiety and the tendency to catastrophize bodily sensations and proved to be superior to paroxetine and a placebo, which did not differ from each other. Indeed, nearly half of the patients assigned to CBT were pain-free at treatment end; this study did not have a long-term follow-up, an important area for future research (Spinhoven, Van der Does, Van Dijk, & Van Rood, 2010). While psychological treatments show promise in the management of esophageal disorders, they are plagued by a wide variety of methodological concerns, including small samples, lack of control groups or control treatments, biased samples, lack of follow-up, and occasionally, cross-sectional designs. Summary Esophageal disorders represent a substantial portion of patients seen in gastroenterology clinics in North America. There is growing support for the complex interplay between physiological and psychological factors in the onset and maintenance of symptoms. This has played out especially in the areas of functional esophageal disorders, including functional heartburn and noncardiac chest pain. Hypnotherapy, but not other forms of psychological intervention, has demonstrated modest efficacy; one area for future consideration is whether other forms of psychological intervention, such as those deemed efficacious in IBS, including CBT and interpersonal psychotherapy may be useful. It will also be increasingly important to identify the underlying mechanisms through which esophageal hypersensitivity and hyperawareness influence symptoms. Psychologists and dietitians will probably have a growing role in optimizing adherence to well-established lifestyle modifications for these disorders. Another area where psychologists may have a role is within the previously ignored area of IBDs. INFLAMMATORY BOWEL DISEASES The IBDs, including the two most common forms, Crohn’s disease (CD) and ulcerative colitis (UC), are

chronic, relapsing, and remitting GI conditions associated with persistent and chronic intestinal inflammation. These conditions are commonly seen in outpatient gastroenterology practice and may present with significant psychosocial comorbidities. Description, Prevalence, and Impact Inflammatory bowel disease is estimated to occur at 396 cases per 100,000 worldwide, affecting up to 1.4 million people in the United States (Centers for Disease Control and Prevention, 2012). A diagnosis of IBD can be made only after a full clinical evaluation, including a physical examination, travel history, medications, smoking, family history, stool frequency and consistency, urgency, rectal bleeding, abdominal pain, fever, fatigue, weight loss, and presence of other extraintestinal manifestations (Carter, Lobo, & Travis, 2004). Further evidence provided by endoscopic, radiological, or histological examination is required. Other causative agents must be ruled out, including bacterial infections and other infectious agents (Carter et al., 2004). Although IBD can be diagnosed at any age, it most commonly presents in adolescence to early adulthood, just as a patient might be entering the workforce or making significant life decisions regarding education, career, and marriage (Marri & Buchman, 2005). Ulcerative colitis, the most common form of IBD, affects up to 500,000 people in the United States. Mucosal inflammation in UC is limited to the colon and involves the rectum in 95% of cases. Distal disease is limited to the rectum (proctitis) or rectum and sigmoid colon (proctosigmoiditis), and pancolitis affects the entire colon (along with other classifications, including left-sided and extensive colitis) (Carter et al., 2004). It is characterized by symptomatic periods (flare-up) and asymptomatic periods (remission). Flare-ups are likely a result of an inappropriate and dysregulated mucosal immune response to luminal antigens, including bacterial products. During flare-up, patients experience bloody diarrhea with feelings of rectal urgency. A flare-up typically lasts for several weeks and sometimes months, with a portion of patients requiring surgery and/or hospital admission (Kornbluth & Sachar, 2004). During remission, patients do not typically experience these symptoms, and quality of life is markedly improved (Irvine, 1997). Exacerbations and remissions may occur either spontaneously or in response to external triggers, including smoking cessation, nonsteroidal anti-inflammatory drug (NSAID) use, concomitant illness, changes in treatment, and psychological stress (Hanauer, 2004; Levenstein et al., 2000). The

Gastrointestinal Diseases

most common concerns of patients with UC include anticipation of the next flare-up, need for surgery in the future, low energy, and the long-term effects of medications, particularly steroids (Irvine, 1997). In a more recent survey, patients with UC identified worry about disease complications (84%), depression (62%), and embarrassment (70%) more often than other chronic disease groups (Rubin et al., 2010). Crohn’s disease is the most disabling and costly form of IBD (Gibson et al., 2008; Peyrin-Biroulet, Loftus, Colombel, & Sandborn, 2010). CD is characterized by transmural inflammation affecting any part of the GI tract, from the mouth to anus, with the location (terminal ileal, colonic, and upper GI tract) and pattern (inflammatory, fistulating, or stricturing) defining the disease (Carter et al., 2004). Symptoms of CD during flare-up include bloody diarrhea and abdominal pain, with possible weight loss, fatigue, and fever in some cases. Extraintestinal symptoms include mouth sores, eye inflammation, joint pain, and skin lesions (Bernstein, 2002). In remission, patients struggle with consequences of intestinal damage, including abdominal pain, discomfort, and bloating (Sandborn, Feagan, & Lichtenstein, 2007). Sleep difficulties, malnutrition, fatigue, and opportunistic infections are also concerns. The most effective therapy for moderate to severe CD is the sustained use of biologic agents (Lichtenstein et al., 2010; Oussalah et al., 2010; Panaccione et al., 2010), often in conjunction with immunomodulators (Colombel et al., 2010; Lichtenstein, Hanauer, Sandborn, & Practice Parameters Committee, 2009; Oussalah et al., 2010). Patients with IBD are more likely to be unemployed or underemployed than their non-IBD counterparts and take considerably more sick leave (Marri & Buchman, 2005). While patients with IBDs have normal life expectancies (Farrokhyar, Swarbick, & Irvine, 2001), quality of life (QOL) is considerably poorer, both physically and emotionally, than in the general population, with patients who have severe disease having the lowest QOL. Although UC and CD present similarities, historically, patients with CD report significantly more disease-related concerns, more psychological distress, and poorer QOL than patients with UC and are more likely to seek out psychosocial support (Miehsler et al., 2008). Differences between the needs of patients with UC versus CD is, in large part, a consequence of the more aggressive and complicated natural course of CD (Drossman et al., 1991; Marri & Buchman, 2005) and the greater risks associated with medical therapies typically reserved for CD (e.g., biologics and immunomodulators).

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Psychological Considerations Research into the psychological effects of IBD focuses on three main areas: the role of stress in disease exacerbation, comorbid depression and anxiety, and health behaviors. Stress and IBD The current conceptualization of the relationship between stress and IBD highlights a complex interplay between the gut physiology of the organism, its neuroendocrine functioning, and environmental stress (Collins, 2001). Mechanisms implicated include the proinflammatory neuropeptide substance P (SP); corticotropin-releasing factor (CRF); and presence of T lymphocytes, interleukin-1β, and acetylcholine (Collins, 2001). Animal models of colitis have shed light on the potential for stress to contribute to disease flare. For example, the cotton-top tamarin (Wood et al., 2000) and Siamang gibbons (Stout & Snyder, 1969) are at increased risk for developing ulcerative-type colitis when they are held in captivity—when they are returned to their natural habitat, they almost immediately experience full remission, suggesting that such stress can directly affect disease onset and course. Additionally, colitis can be induced and reexacerbated when rats are exposed to any number of psychological stressors, including restraint stress, water avoidance tasks, or prolonged maternal separation (Mawdsley & Rampton, 2005). When animals are maintained under chronic stress (such as prolonged maternal separation), they exhibit increased vulnerability to acute stressors (such as inescapable shock) and are more likely to experience an exacerbation of their colitis during this time (Milde, Enger, & Murison, 2004). Finally, there is evidence that stress can increase GI inflammation through reduced HPA function (Million, Tache, & Anton, 1999), alter GI permeability, and influence bacteria–host interactions in rat models—such physiological changes typically precede relapse in UC (Elson, 2002; Kiliaan et al., 1998). Human models have produced more mixed results in this regard (Keefer, Keshavarzian, & Mutlu, 2008; Levenstein, 2008). However, significant life events consistently appear to be a trigger for relapse in UC (Bitton et al., 2001; Mardini, Kip, & Wilson, 2004). The impact of these life events on relapse may be mediated by coping—UC patients with higher perceived stress were significantly more likely to experience a flare-up within 2 years than their less stressed counterparts (Levenstein et al., 2000). Regardless of the current evidence linking stress and IBD, 75% of IBD patients identify psychological stress as a direct trigger for disease flare-ups (Lewis, 1998; Moser,

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Maeir-Dobersberger, Vogelsang, & Lochs, 1993). It has also been fairly established that patients with a higher frequency of stressful life events require more potent medications (Anton, 1999). Comorbidity Comorbid anxiety and depression can exacerbate reduced quality of life (Irvine, 1997) and contribute to poorer disease outcomes (Addolorato et al., 1996; Addolorato, Capristo, Stefanini, & Gasbarrini, 1997; Mittermaier et al., 2004; Moser, 2009; Walker et al., 2008); however, this has recently been contested (Mikocka-Walus et al., 2008). Anxiety and depression may be more prevalent during disease flare-up and may warrant intervention (Graff et al., 2009). Patients who develop depression or anxiety during their disease course are also more susceptible to relapse in the next 18 months than their nonpsychologically distressed counterparts (Mittermaier et al., 2004; Walker et al., 2008). Sexual dysfunction is also reported in a subset of IBD patients but seems to be related more to psychological concerns than to the disease itself (Timmer et al., 2008). Patients may also experience enhanced anxiety related to IBD treatments. Worry about the effects of medication and disease complications is second only to worry about having an ostomy bag (Moser et al., 1995; Stjernman, Tysk, Almer, Strom, & Hjortswang, 2010). A 2010 study of pregnant women with IBD found that 84% expressed significant concerns about negative effects of IBD medication on pregnancy outcomes, even though data do not support these perceptions (Mountfield, Prosser, Bampton, Muller, & Andrews, 2010). Of particular concern are the newly developed biological therapies (e.g., infliximab, adalimumab, certolizumab), which are identified as having significant risk (i.e., Food and Drug Administration [FDA] Black Box Warning) for adverse events such as serious opportunistic infections and carcinomas. Patients express significant concerns about the risk–benefit ratio of using biological therapies (Baars, Siegel, Kuipers, & van der Woude, 2009), which may influence their decision to use or their adherence to these medications; physicians are encouraged to inquire about patient factors influencing treatment decisions (S. V. Kane, Loftus, Dubinsky, & Sederman, 2008). Treatment-related anxiety may be due to what most IBD patients report as insufficient information and education provided about their disease (Baars et al., 2010; Martin, Leone, Castagliuolo, Di Mario, & Naccarato, 1992; Rakshit & Mayberry, 2008). This lack of information can not only increase anxiety but also influence

treatment decision making (Baars et al., 2009) and adherence, although it should be noted that a third of patients may feel that knowledge about disease severity would increase their anxiety levels. Overall, patient education is an important factor in reducing patient concerns and improving outcomes. Care should be taken to adequately educate IBD patients about not only their disease but also its treatments, understanding that information may exacerbate disease-related anxiety in some patients. Health Behaviors It is evident that persons with IBD may experience psychological distress associated with diagnosis of IBD, symptom experience, and the demands disease management places on the individual. IBD patients who have difficulty adapting to disease-related demands report more bowel and systemic symptoms, more pain, less engagement in activities, higher perceived stress, an emotional representation of illness, and higher health-care use (Kiebles, Doerfler, & Keefer, 2010). Risk of flare-up and the efficacy and dosing of medications required to induce and sustain remission is directly influenced by patientdriven health behaviors, including medication adherence (Ediger et al., 2007; Higgins, Rubin, Kaulback, Schoenfield, & Kane, 2009; S. Kane, 2002, 2005; S. Kane & Dixon, 2006; S. Kane, Huo, Aikens, & Hanauer, 2003; S. Kane & Shaya, 2008; S. V. Kane, 2008; S. V. Kane, Chao, & Mulani, 2009; S. V. Kane & Robinson, 2010; Lakatos, 2009; Sandborn et al., 2007; Sewitch et al., 2003; Shale & Riley, 2003). Medication adherence in IBD is notably poor (Jackson et al., 2010), with as many as 50% of patients reporting partial nonadherence (regularly missing doses) and 12% who are completely nonadherent (Ediger et al., 2007; Higgins et al., 2009; S. Kane & Dixon, 2006; S. Kane & Shaya, 2008; S. V. Kane, 2008; S. V. Kane et al., 2009; S. V. Kane & Robinson, 2010; Lakatos, 2009; Sandborn et al., 2007; Sewitch et al., 2003; Shale & Riley, 2003). There is an expected annual relapse rate between 58 and 89% for UC patients who do not follow their maintenance regimen (Misiewicz, Lennard-Jones, Connell, Baron, & Avery Jones, 1965; Wright, O’Keefe, Cuming, & Jaskiewicz, 1993). Adherence research in IBD suggests that the level of involvement patients believe they have in their treatment plan (Sewitch, Leffondre, & Dobkin, 2004), amount of perceived stress (Levenstein et al., 2000; Sewitch et al., 2003), and perception of poor health have a negative effect on adherence to medical regimens (Sewitch et al., 2003).

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Other psychosocial factors believed to directly impact the efficacy of treatment include the patient–physician relationship (Andrews, Mountifield, Van Langenberg, Bampton, & Holtmann, 2009; Barrett, Standen, Lee, Hawkey, & Logan, 1996), disease knowledge (de Rooy et al., 2001; Kiebles, Doerfler, et al. 2010; Lewis, 1998; Moser et al., 1996), and smoking (Carter, Lobo, & Travis, 2004). For CD in particular, smoking cannot only increase the risk of onset of disease but also exacerbate existing disease (e.g., Silverstein, Lashner, Hanauer, Evans, & Kirsner, 1989; Somerville, Logan, Edmond, & Langman, 1984; Tobin, Logan, Langman, McConnel, & Gilmore, 1987). Medical Management of IBD Current standard of care in IBD treatment is aimed at managing the inflammatory response during flare-up episodes and maintaining remission, with an emphasis on adhering to a regular medication regimen (S. Kane et al., 2003). While the pathophysiology of IBD is unknown, vasoactive intestinal protein, tumor necrosis factor-alpha (TNF-a), oxidant molecules, endogenous glucocorticoids, and heat shock proteins have all been implicated and targeted for treatment. However, medical therapies for IBD are not without significant side effects. These flare-up episodes, caused by inflammation, are marked by increased frequency of bowel movements involving bloody diarrhea and urgency, among other classic extraintestinal symptoms. Even when treatment is optimal, patients still have flare-ups. The first-line treatment during flare-up episodes is corticosteroids, inhibiting several inflammatory pathways (e.g., interleukin transcription, arachidonic acid metabolism, lymphocyte apoptosis) (Carter et al., 2004). Corticosteroids (e.g., prednilosone, prednisone, budesonide) may be taken orally or used topically through suppositories, foams, and enemas. While 50% of users of corticosteroids may not experience side effects, others may experience significant side effects, including acne, edema, sleep and mood disturbance, dyspepsia, and glucose intolerance in the short term (Carter et al., 2004). Long-term use may result in cataracts, osteoporosis, osteonecrosis, myopathy, and increased risk of infection (Carter et al., 2004). The aminosalicylates (such as mesalazine or 5-aminosalicylic acid) are commonly used to maintain remission in mild UC and CD (Carter et al., 2004). Side effects from this class of drugs may affect up to 45% of patients and can include headache, nausea, epigastric pain, and diarrhea, with more serious side effects

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including Stevens-Johnson syndrome (skin blistering), pancreatitis, agranulocytosis, and alveolitis (Carter et al., 2004). Thiopurines (aka, immunomodulators, including azathioprine and mercaptopurine) are effective for both active disease and maintaining remission in CD and UC. Side effects for thiopurines include flulike symptoms (observed in up to 20%), leukopenia (up to 3%), and hepatotoxicity and pancreatitis ( 22 kg/m2 (Laughton, Buchholz, Martin Ginis, Goy, & SHAPE SCI Research Group, 2009). Obesity can result in a variety of consequences, including negative impacts on physical health, functional ability, and independence. Obesity has been associated with medical consequences, including cardiovascular disease (Meyers, Lee, & Kirati, 2007), metabolic consequences (Gater, 2007), pulmonary embolism (Green, Twardowski, Wei, & Rademaker, 1994), sleep apnea (Stockhammer et al., 2002), and diabetes (Bray, 2004). SCI-specific medical conditions are also complicated with obesity, including an increase in pressure sores, urinary tract infections, and spasticity (Chen, Cao, Allen, & Richards, 2011). Functional ability can be reduced by the consequences of obesity as well. Associations have been found with osteoarthritis (Gater, 2007), carpal tunnel syndrome (Bland, 2005), and overall upper extremity overuse (Fitzgerald & Kellerher, 2007). As a result of these conditions, functional ability can be markedly impaired as compared to their nonobese SCI counterparts. For example, overweight individuals with SCI can have more limitations with transfers,

resulting in increased caregiving needs (Blackmer & Marshall, 1997). Obesity can also have negative implications for SCI rehabilitation. Given the obesity rates in the U.S. population, it is likely that more individuals who sustain SCI would be overweight or obese at the time of injury; thus participation and outcome of inpatient rehabilitation following injury can be negatively affected. Case studies have shown that obese individuals with SCI make lower Functional Independence Measure (FIM) gains during inpatient rehabilitation (Blackmer & Marshall, 1997). Level of injury appears to be a factor as well. Obesity appears to have a greater impact on individuals with paraplegia versus those with tetraplegia during inpatient rehabilitation due to the expectations of someone with a paraplegic injury to have greater independence in activities, including independence transfers and wheelchair mobility (Stenson, Deustsch, Heinemann, & Chen, 2011). In a study of 1,524 patients participating in their first inpatient rehabilitation program, individuals with paraplegia and obesity made lower FIM gains in self-care and mobility than those with normal weight (Stenson et al., 2011).

PSYCHOLOGICAL PERSPECTIVES OF SCI REHABILITATION AND RESEARCH Despite the rich body of SCI research, there are several key issues that merit closer scrutiny. Most SCI research studies have been cross-sectional in nature, thus making causal inferences among different variables complicated (Pollard & Kennedy, 2007). To better understand long-term outcomes in SCI, a thorough examination that employs appropriately sophisticated statistical procedures and repeated measures of the various psychological, social, and environmental factors that affect adjustment over time must be performed. Currently, there is a dearth of studies that take advantage of modeling procedures that study outcomes associated with SCI within a broader conceptual context. Modeling techniques such as structural equation modeling (SEM; van Leeuwen, et al., 2012) and latent class growth modeling (van Leeuwen, et al., 2011) contextual relationships between and among variables that occur over time can be better examined and understood (Weston, Gore, Chan, & Catalano, 2008). This is particularly true in the stream of longitudinal studies from the collaborative Model Systems project, in which many demographic and disability-specific variables are examined as predictors of life satisfaction, depression,

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and health status (Charlifue, et al., 2004; Lammertse, Jackson, & Sipski, 2004; Whiteneck et al., 2004). However, these studies do not routinely test a priori hypotheses informed by psychological theories. Theory-driven, longitudinal studies of psychological predictors of adjustment over time are lacking. This limits our ability to identify and understand the psychological mechanisms at work in quality of life post-SCI, it undermines our ability to make meaningful predictions for behavior and outcomes under general and specific conditions, and it compromises our ability as psychologists to develop and provide strategic behavioral and environmental interventions. Throughout the years, adjustment post-SCI has been primarily viewed from a medical model of rehabilitation focused on the diagnosis and treatment of disorder, disease, or injury (Elliott & Warren, 2007; World Health Organization [WHO], 2001). Advances in the understanding of disease processes and related etiologies have resulted in the development of effective methods for responding to both the acute and chronic needs of persons with physical disabilities (Peterson & Elliott, 2008). In the United States, the medical model has greatly influenced the primary classification system of disability, the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10; WHO, 1992), which describes disabilities on the basis of the etiology of health conditions (e.g., disorders, diseases, injury) related to morbidity (illness) and mortality (death) (Peterson & Elliott, 2008). For example, the ICD-10 classifies SCI by the level of injury (i.e., location in spinal column) and the degree to which the spinal cord is impaired (incomplete versus complete). Although the medical model has led to improvements in the diagnosis and treatment of medical complications following disability, there is a growing body of literature suggesting the nature and course of disability over the life span is largely influenced by social and behavioral mechanisms. As psychologists have become more prominent in rehabilitation settings, they have conducted research that suggests that the medical model is inadequate for conceptualizing and treating persons with acquired chronic disabilities, such as those with SCI (Elliott & Warren, 2007). Instead, adjustment following SCI—and quality of life, generally—should be viewed as a dynamic, biopsychosocial process that is affected by numerous physical, social, and psychological factors (Dorsett & Geraghty, 2008). The biopsychosocial model attempts to integrate individual and interactive effects of medical diagnoses with significant psychological (e.g., coping abilities, personality traits) and social (e.g., social support, stress)

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factors in the explanation of optimal adjustment (Peterson & Elliott, 2008). The paradigm shift from the medical model to the biopsychosocial model led to the development of the International Classification of Functioning, Disability and Health (ICF ; WHO, 2001), which considers “individual’s functioning in a specific domain [as] an interaction or complex relationship between the health condition and contextual factors” (environmental and personal factors; WHO, 2001). Unlike the medical model, the ICF recognizes the importance of social activity and psychological well-being in the development of overall adjustment and optimal health outcomes for persons with disabilities (Peterson & Elliott, 2008). Although the ICF is growing in influence, it has been criticized for lacking clear conceptual definitions and a solid theoretical base for understanding the psychosocial and behavioral processes of persons with disabilities (Peterson & Elliott, 2008; Whiteneck & Dijkers, 2009). For the remainder of the chapter, we review the relevant research concerning behavioral and social factors that are related to maladjustment (e.g., depression, anxiety, PTSD), secondary complications (e.g., pressure sores, pain), quality of life, resilience, and participation and social integration. The chapter concludes with a look at several effective intervention strategies and future directions for understanding and improving the adjustment process for persons with SCI.

Psychological Adjustment Depression Depression has received more attention from clinicians and researchers than any other psychological issue among persons with SCI (Elliott & Frank, 1996). For many years, clinical lore maintained that depression was an expected outcome soon after the onset of SCI, and it was believed to indicate the stage of adjustment when persons with SCI rationally accept the permanence of their injury. (For a critique of these models, see Frank, Elliott, Corcoran, and Wonderlich, 1987.) In recent years, empirical research has broadened our understanding of depression considerably. Depression is no longer viewed as a necessary element in the adjustment process; however, research has shown that depression is the most common type of psychological distress post-SCI (Saunders, Krause, & Focht, 2011). Studies focused on major depression have found higher prevalence rates among persons with SCI, ranging from 9.8 to 37.5%, with the majority of prevalence rates ranging from 15 to 23% (Bombardier, Richards, Krause,

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Tulsky, & Tate, 2004), compared to a prevalence rate of 6.7% among the general population (National Institute of Mental Health, 2010). The variability in major depression prevalence rates among persons with SCI is probably a result of differences in sample characteristics (e.g., gender, time since injury) and methodology (e.g., instruments, diagnostic criteria) used to measure major depression throughout the SCI literature. Research data suggest that the prevalence of major depression may be the highest in the first year postinjury (Hoffman, Bombardier, Graves, Kalpakjian, & Krause, 2011). Richardson and Richards (2008) provided support for a decrease in prevalence rates over time, with major depression rates of approximately 21%, 18%, 12%, and 12% in their sample of persons with SCI surveyed at 1, 5, 15, and 25 years postinjury. Hoffman and colleagues (2011) followed 411 persons with SCI for 5 years and found approximately 20% reported symptoms of major depression at 1 year postinjury and 18% reported symptoms at year 5 postinjury. Further, approximately a third of the sample who reported symptoms of major depression at year 1 had experienced remission by year 5, and approximately 9% reported symptoms of major depression for the first time at year 5 (Hoffman et al., 2011). The vast literature in psychiatric epidemiology suggests that women have an increased vulnerability to major depression (Kalpakjian & Albright, 2006). However, the small collection of empirical research examining gender differences in the prevalence rates of major depression among persons with SCI has resulted in mixed findings (Kalpakjian & Albright, 2006). Williamson and Elliott (2011) found that gender was significantly associated with the diagnosis of major depression due to the higher percentage of women (22.6%) than men (12.3%) in a sample of 354 persons with recent-onset (≤52 weeks) SCI who met DSM-IV-TR criteria for a major depressive episode. Krause, Kemp, and Coker (2000) found women to be at greater risk for developing depressive symptomatology when they analyzed gender differences in a sample of 1,391 persons with SCI. In a sample of 64 women living with SCI for a minimum of 2 years, Hughes, Swedlund, Petersen, and Nosek (2001) found that over half of their sample (59.4%) met diagnostic criteria for major depression. Kalpakjian and Albright (2006) reported that women who were already divorced or divorced within the first year after injury had an increased likelihood of major depression. However, Kalpakjian and Albright (2006) failed to find significant gender differences in the severity of depressive symptoms or the rate of major depression in their sample of 585 women with SCI from the SCI Model System

National SCI Database. As a result, additional research on gender differences in the rate of major depression among persons with SCI is needed to determine whether there are significant gender differences in prevalence rates of major depression among persons with SCI, similar to those found within the general population. The specific instruments (Krause et al., 2009) and criteria (DSM-IV-TR, American Psychiatric Association, 2000; Bombardier et al., 2004; ICD-9, Smith, Weaver, & Ullrich, 2007) used to measure major depression seem to influence the variability in the prevalence rates of major depression. Lower rates of major depression have been found in studies utilizing conservative self-report instruments and interview methods (Judd & Brown, 1992) based on the DSM-IV-TR diagnostic criteria (Elliott & Kennedy, 2004). The Patient Health Questionnaire-9 (PHQ-9; Kroenke, Spitzer, & Williams, 2001) is the most widely used instrument throughout the literature, and it is also utilized by the Model Spinal Cord Injury Systems (MSCIS) centers to measure major depression (Bombardier et al., 2004). The items on the PHQ-9 represent the symptoms of major depression based on the DSM-IV-TR diagnostic criteria. Other self-report measures of major depression do not assess the specific symptoms needed to meet diagnostic criteria for major depression. These instruments yield useful information, but care should be taken in extrapolating from this work. It is probable that these instruments assess an underlying distress that may not distinguish depressive behavior from related problems with anxiety. The comorbidity of major depression with SCI often has a negative impact on SCI rehabilitation (Faber, 2005). A diagnosis of major depression in persons with SCI has been associated with reductions in their quality of life, including increased lengths of stay in inpatient rehabilitation, poor self-care compliance resulting in increased rates of pressure sores and urinary tract infections, decreased independence in activities of daily living, increased medical expenses, and increased risk of suicide or requests for terminating life (Dryden et al., 2005; Krause, Saladin, & Adkins, 2009; Saunders et al., 2011). Anxiety Increased levels of anxiety have been observed in approximately 23 to 35% of persons with SCI (Kennedy, Duff, Evans, & Beedie, 2003). According to Kennedy and Rogers (2000), persons with SCI who feel a lack of control or inability to cope with the future consequences of their injury are more likely to suffer from symptoms of anxiety. Chung, Preveza, Papandreou, and Prevesas (2006) studied symptoms of anxiety in 62 persons with SCI during

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the rehabilitation phase and found over half of the sample struggled with symptoms of anxiety. In a longitudinal study by Pollard and Kennedy (2007), there was little change in the prevalence rates of anxiety from 12 weeks to 10 years postinjury, and persons displaying clinical symptoms of anxiety at 12 weeks postinjury had a significantly greater likelihood of displaying clinical symptoms of anxiety at 10 years postinjury. Posttraumatic Stress Disorder Due to the high rate of injuries as a result of traumatic experiences such as motor vehicle accidents, violence, falls, and sporting accidents, several studies have focused on the prevalence rates of posttraumatic stress disorder (PTSD; Krause, Saunders, & Newman, 2010). There has been great variability in the prevalence rates of PTSD among the SCI population, with reported rates as low as 7% (Migliorini, Tonge, & Taleporos, 2008) and as high as 60% (Hatcher, Whitaker, & Karl, 2009). Krause and colleagues (2010) found that less than 10% of a nonveteran population including 927 adults with chronic SCI (≥8 years postinjury) met diagnostic criteria for PTSD, compared to 6.8% in the general population (Kessler et al., 2005). Chen, Henson, Jackson, and Richards (2006) reported a much larger percentage (44%) of persons who met diagnostic criteria for PTSD in a study of 62 persons with SCI. Kennedy and Evans (2001) found 14% of persons with SCI reported symptoms of PTSD, such as avoidance of the traumatic stimuli and intrusive disturbing thoughts about the traumatic injury-related event, and women had a greater likelihood of reporting PTSD symptoms following SCI than men. Quality of Life Despite the rich literature of various psychological issues associated with SCI, the study of positive, optimal adjustment has been traditionally overlooked. Within the past 15 years, the SCI literature started to address quality of life (QoL) outcomes, with particular attention to life satisfaction, health status, and environmental accessibility, social integration, and mobility (Leduc & Lepage, 2002; LoBello et al., 2003; Whiteneck et al., 2004). The QoL construct has been conceptualized in different ways across various disciplines. Although a consensus on a definition for QoL has yet to emerge, in the SCI literature QoL is frequently concerned with the individuals’ experience and subjective well-being. The controversy over the use of objective measures to determine QoL following SCI is a valid concern, as each individual is unique and the severity of injury does not greatly affect QoL

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(Hampton, 2004; Kennedy, Lude, Elfstrom, & Smithson, 2010; Krahn, Suzuki, & Horner-Johnson, 2009). In general, research suggests that people with SCI tend to report lower QoL than nondisabled persons and lower physical, mental, and social health (Dijkers, 2005). The variation in QoL appears to be influenced by individual differences in personal, social, and environmental factors (Post & van Leeuwen, 2012). In an important study of different trajectories of life satisfaction from inpatient SCI rehabilitation to 5 years post-discharge, individuals (N = 56) who reported the lowest levels of life satisfaction across all measurement occasions experienced more pain and had more functional impairments than the groups that had higher life satisfaction over time (van Leeuwen et al., 2011). Research also indicates that individuals can lead fulfilling and satisfying lives after SCI (Pollard & Kennedy, 2007). In fact, it is important to note that studies have reported that up to 75% of individuals with SCI report their QoL as good or excellent (Whiteneck et al., 1992). Secondary medical complications (e.g., bladder problems, neurogenic pain, pressure ulcers) adversely affect QoL (Kennedy et al., 2010). Certain activities, such as employment, can also influence adjustment. Individuals with SCI who are unemployed report lower level of QoL than those who are employed full-time or part-time (Kennedy et al., 2010). More research is needed to better appreciate ways in which interpersonal and social factors interact to influence adjustment (Muller, Peter, Cieza, & Geyh, 2012). Resilience Resilience has been defined as “the ability of adults in otherwise normal circumstances who are exposed to an isolated and potentially highly disruptive event such as the death of a close relation or a violent or life-threatening situation to maintain relatively stable, healthy levels of psychological and physical functioning” (Bonanno, 2004, p. 20). As a result of the growing interest in the construct of resilience, researchers began to examine the concept among individuals who have experienced a traumatic injury, including SCI. For example, Quale and Schanke (2010) examined trajectories of psychological adjustment (i.e., resilience, recovery, distress) of 80 participants following a physical injury (including SCI). The individual’s psychosocial trajectory was determined by measuring satisfaction with social support, injury severity, PTSD, anxiety, depression, positive affect and negative affect, and optimism and pessimism. Based on the individual’s psychological distress and state positive affect, participants were then

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classified into one of three trajectories: resilience (defined as having low distress and high state positive affect at both admittance and discharge), recovery (measured by improvements on at least one of the symptom scales), or distress (defined as high distress, high state negative affect, or low state positive affect at both admittance and discharge). Results indicated that the resilience trajectory (54%) was most prevalent, followed by recovery (25%) and distress (21%). In another study, White, Driver, and Warren (2010) examined changes in resilience and indicators of adjustment (i.e., satisfaction with life, depressive symptoms, spirituality, functional independence) in 42 individuals with SCI during inpatient rehabilitation. Results indicated that resilience was significantly associated with satisfaction with life, spirituality, and depressive symptoms. Results indicate the traitlike nature of resilience and relationship to rehabilitation outcomes. DeRoon-Cassini, Rusch, Mancini, and Bonanno (2010) also investigated the longitudinal relationship between resilience and health outcomes (i.e., self-efficacy, PTSD, and depression) in 330 following traumatic injuries. After initial assessment, participants were classified into four groups or trajectories: chronic distress, delayed distress, recovered, and resilient. Individuals in the chronic distress group demonstrated PTSD and depressive symptoms that increased from hospitalization to measurement at 6 months. Participants in the delayed distress group reported an increase in PTSD and depressive symptoms, with a dramatic increase between measurements at 3 months and 6 months. The recovered group peaked in PTSD and depression at 3 months and then returned to baseline at the 6-month follow-up. Finally, the resilient group remained stable from hospitalization through 6 months, with no apparent increase or decrease in PTSD and depressive symptoms. These findings suggest that those individuals who are resilient at the start of rehabilitation may demonstrate an overall better recovery with fewer long-term psychosocial issues. Examination of resilient traits among persons with SCI reveals that these individuals report less depression at the beginning of their rehabilitation program, greater acceptance of disability, and more effective problem-solving strategies at discharge than patients with rigid, inflexible, and overcontrolled personality styles (Berry, Elliott & Rivera, 2007). Despite the evidence that people may follow a resilient, stable pattern of adjustment, there is minimal research examining whether resilience is related to long-term health outcomes for individuals after a traumatic injury. Consequently, it is important to identify if resilience

can predict a long-term adjustment so that at-risk individuals may be identified early in the rehabilitation process. Posttraumatic Growth Posttraumatic growth (PTG) was defined by Calhoun and Tedeschi (1999) as the positive psychological changes that may occur following a traumatic event. This does not exclude the experience of negative psychological responses to a traumatic event, such as SCI, but it is theorized that coping with trauma can produce positive outcomes, including enhancing interpersonal relationships, increasing one’s spirituality, feeling more appreciative of one’s life, or making changes in values and goals (Chun & Lee, 2008). In a study of 42 individuals with SCI, 79% described increased family closeness and greater degree of compassion as positive benefits they experienced postinjury (McMillen & Cook, 2003). Further, these individuals reported a decrease in substance use (alcohol and illicit drug use) postinjury, suggesting that PTG resulted in behavior changes. A qualitative study of PTG and SCI by Chun and Lee (2008) found that family relationships, meaningful engagement in activities such as the experience of positive emotional states, and an increased appreciation for life emerged as the primary themes postinjury. Participation and Access to the Environment The International Classification of Functioning (ICF) of Disability, delineated by the World Health Organization (WHO, 2011), recognizes the substantial impact of environmental factors on individuals with a disability. Participation may be defined as a “person’s lived experiences of involvement in their life satisfaction” (Larsson Lund, Nordlund, Bernspang, & Lexell, 2007, p. 1417). Decreases in participation are related to decreases in life satisfaction following SCI (Larsson Lund et al., 2007). As with many constructs in disability research, access to environment is not clearly defined in the field, and it is one that is difficult to measure (Ullrich, Spungen, Bombardier, Erosa, & Ottomanelli, in press; Whiteneck & Dijkers, 2009). However, the ICF definition conceptualizes environment as factors that “make up the physical, social, and attitudinal environment in which people live and conduct their lives” (WHO, 2001, p. 10). Persons’ mobility and social integration are the prominent components in this definition. For the purposes of this current study, access to the environment is social integration and mobility, both scales from the Craig Handicap Assessment and Reporting Technique (CHART; Whiteneck et al., 1988). Social integration is the persons’ ability to socially

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interact with others, and mobility is the persons’ ability to be mobile in their surroundings, both inside and outside their home (Whiteneck et al., 1988). Studies that have implemented environmental factors have found promising results in understanding the impact of environmental factors in the adjustment process over time. In studies that use environmental factors in their disability model, it has been found that social integration and mobility (as measured by the CHART) are strongly related to life satisfaction levels (Whiteneck et al., 2004). Individuals with SCI who have greater accessibility to their community report less physical secondary conditions (Suzuki, Krahn, McCarthy, & Adams, 2007). In addition, studies have shown that greater access to the environment leads to greater life satisfaction at both 1 and 2 years postinjury (Putzke et al., 2002; Richards et al., 1999). Mobility and social integration have been related to lower levels of pain as well (Putzke, Richards, Hicken, & DeVivo, 2002). In contrast, individuals with SCI have reported significant lower QoL levels and greater handicaps in mobility and social integration when they experienced extreme pain levels (Putzke, Richards, & Dowler, 2000). Studies that focus on access to the environment with the mobility dimension of the CHART have found that it is positively and linearly associated with life satisfaction, and it was predictive of life satisfaction once other variables were controlled (Richards et al., 1999). In addition, studies of the social integration dimension of the CHART have found that it, too, is positively related to higher life satisfaction (LoBello et al., 2003). Higher social integration is also related to higher family satisfaction levels (LoBello et al., 2003). The CHART is purported to be an objective measure of participation (Whiteneck et al., 1988). However, recent research indicates that personality characteristics strongly influence the self-report of participation among community-residing persons with SCI (van Leeuwen et al., 2012). Greater neuroticism and lower selfefficacy accounted for 49% of the variance in self-reported participation. Future research is needed to examine the prospective influence of enduring and stable personality factors on the self-report of participation as measured by the CHART.

PSYCHOLOGICAL INTERVENTIONS The psychological intervention research in SCI has been characterized by low sample sizes and a lack of randomized studies (Post & van Leeuwen, 2012). In an evidencebased review of the intervention research for depression

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associated with SCI, Elliott and Kennedy (2004) found no study met the highest level of evidence or grade for recommendation. This was true for both the antidepressant and the psychological intervention research. Clinical research suggests that formal interventions are available to relatively few persons with SCI who experience psychological problems. A study of Model Systems patients found that only 29% of those who were depressed were prescribed antidepressants, 11% of this group received the recommended doses and duration, and 11% had received psychotherapy in the previous 3 months (Fann et al., 2011). Recent literature reviews indicate a surge in the study of psychological interventions for persons with SCI, generally in the time since the Elliott and Kennedy (2004) paper. In their meta-analysis, Dorstyn, Mathias, and Denson (2010) found that psychological interventions for depression exhibited large effect sizes (and similar effects were found on assertiveness, coping, self-efficacy, and elements of quality of life). These effects were confined to short-term psychological outcomes, however, and very little evidence was found for effects over a longer period. A more recent evidence-based review of cognitivebehavioral therapies (CBT) for psychological issues concluded that there is evidence to support the use of CBT in treating depression and anxiety post-SCI (Mehta et al., 2011). The evidence was weaker for interventions that addressed coping. The strongest effects were found for studies of persons who were diagnosed with a major depressive disorder (Kahan et al., 2006). Collectively, these reviews point out several problems in conducting intervention research with persons with SCI, including small sample sizes (and corresponding problems with decreased power) and difficulties imposed when nondepressed individuals participate (such as ceiling effects and unsuccessful randomization that can result in unequal distribution of depressive symptoms in the study groups), and a lack of randomized interventions that examine followup and long-term benefits. None of the studies reviewed compared a psychological intervention with a bona fide treatment alternative. Practically all of the studies included in these reviews were conducted in a health-care setting with identified “patients.” To remedy the disparities persons with SCI face in accessing mental health services in the community, and to address the issues experienced by many family caregivers, innovative research has examined home-based interventions for community-residing persons with SCI. In the most comprehensive study of this type, Schultz et al. (2009) used an established protocol developed in

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the largest multisite clinical trial of psychosocial interventions for family caregivers of persons with dementia and Alzheimer’s disease (Gitlin et al., 2003). Of all of the psychological intervention research to date concerning SCI, this study is the only multisite trial, it is the only one that specifically targeted older persons with SCI and their caregivers, it is the only one to feature three comparison groups (two treatment groups, one control group), and it is the only one to feature an intervention for both caregiver and care recipient. It also had the largest sample for participation and analysis: 173 caregiver–care recipient dyads (and a very low attrition rate of 12 to 14% over the 6 months of treatment and for the follow-up assessment at the 12th month). Although the intervention benefited caregivers, there were no direct effects of the intervention on persons with SCI in either treatment group. In contrast, results from a smaller, single-site, randomized clinical trial that utilized long-distance technology to train family caregivers in problem-solving skills found that persons with SCI with family caregivers who received the intervention demonstrated significant improvements in social functioning over the 12 months of treatment (Elliott, Brossart, Berry, & Fine, 2008). Health Promotion Interventions A meta-analysis of the relevant literature reveals a small to medium-size positive relationship between physical activity and subjective well-being among persons with SCI (Martin Ginis, Jetha, Mack, & Hetz, 2010). Unfortunately, people with SCI have one of the most sedentary lifestyles of any segment of society, due in part to the nature of the neuromuscular concomitants of the injury and to the lack of and access to inadequate facilities for exercise and meaningful activity. Two of the leading causes of death in among individuals with SCI—cardiovascular and respiratory disease—are associated with a physically inactive lifestyle (Martin Ginis & Hicks, 2005). A systematic, impressive research program demonstrates that education, goal setting, problem-solving preparation, and action planning increase physical activity (including leisure time activity and exercise) among persons with SCI. This work features several elements characteristic of an influential research program, including an informative theoretical model (as it leans heavily on the theory of planned behavior: Ajzen, 1991), phenomenological perspectives (to increase relevance), critical literature reviews, cross-sectional tests of important concepts (some suggesting that environmental access may be less of a predictor of behavior than personal characteristics: ArbourNicitopoulos, Martin Ginis, Wilson, & the SHAPE-SCI

Research Group, 2010), and randomized clinical trials (RCTs). Results from the RCTs, for example, indicate that participants who develop specific action plans and intentions to implement their plans (when barriers are encountered) significantly increased their physical activity over an 8-week period, and they demonstrated greater self-efficacy and perceived control than those in a control group (Latimer, Martin Ginis, & Arbour, 2006). These effects are strengthened with the additional training in coping plans, particularly for facing barriers to preferred activities (Arbour-Nicitopoulos, Ginis, & Latimer, 2009). Treatment of Obesity in SCI There remains a dearth of research of treatment options for obesity associated with SCI. Only one intervention study has been published: Chen and colleagues (2006) showed that individuals with SCI who participated in a 12-week diet and exercise program lost on average 3.8% of body weight. More studies in this population need to be conducted. Treatment recommendations for obesity in this population are similar to the able-bodied population, with diet and exercise changes the primary recommendation (Gater, 2007). However, those with SCI have unique challenges, most specifically related to exercise and physical activity, as compared to those without disability. In general, research has confirmed that mobility limitations in those with SCI result in low levels of physical activity (Buchholz, McGillivray, & Pencharz, 2003). Other treatment options used in the able-bodied population, such as medication, gastric bypass, and liposuction, have not been studied among those with SCI. Pain Therapies Unfortunately, chronic pain remains largely untreatable in this population (Cardenas & Jensen, 2006), although researchers and clinicians continue to look for best practices in this area. There is some evidence that antiseizure medications, such as gabapentin, may have some utility in the treatment of neuropathic pain post-SCI (Teasell et al., 2010). One study of a multidimensional pain management program (that included education, behavioral therapy, relaxation, stretching, light exercise, and body awareness training) for 27 patients with SCI found significant reductions in depression and anxiety and increases in sleep compared to a control group (Budh, Kowalski, & Lundeberg, 2006). A recent review by the Task Force on Pain Following SCI, sponsored by the International Association for the Study of Pain, found that there was strong evidence for the use of anticonvulsants, particularly for central or

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neuropathic pain. However, one study found respondents reported more frequent relief (albeit brief) from massage and the use of marijuana (Cardenas & Jensen, 2006). A study of a larger sample utilized more conventional methods (e.g., physical therapy, oral medications) with little to circumscribed self-reported benefits (Warms, Turner, Marshall, & Cardenas, 2002). Psychological and social factors are implicated in the expression, maintenance, and impact of chronic pain post-SCI (Jensen, Moore, Bockow, Ehde, & Engel, 2011), so it is likely that studies of psychological interventions for pain are forthcoming (a situation regrettably similar to the state of the work in this area almost 20 years ago; see Umlauf, 1992). CONCLUDING REMARKS AND FUTURE DIRECTIONS The study and application of psychological perspectives in SCI will grow tremendously in the coming decade for several reasons. As noted earlier, behavioral and social mechanisms are implicated in the well-being and quality of life of persons with SCI, who are living longer lives yet inadvertently placing greater financial strains on health-care resources. This is particularly true in the public sector, as the increase in wounded and aging veterans with acquired SCIs now makes the Department of Veterans Affairs (VA) the largest provider of SCI care and rehabilitation in the world (Department of Veterans Affairs, 2009). Consequently, the VA will devote considerable resources to identifying best practices for care and rehabilitation (Ullrich et al., in press). Additionally, the increase in chronic health conditions, generally, and the growing recognition of the role of behavioral and social pathways in quality of life among individuals with these conditions have contributed to an unprecedented interest in consumer-driven outcome measures to benefit patients, clinicians, researchers, service delivery systems, and policy makers. This movement has resulted in the emerging Patient Report Outcomes Measurement Information System (PROMIS; www.nihpromis.org/default.aspx), funded by the National Institutes of Health, concerning the feasibility and applicability of measures across a variety of chronic health conditions. A parallel enterprise—the Common Data Elements project funded by the National Institute of Neurological Disorders and Stroke (NINDS)—is developing and refining standards to “enable clinical investigators to systematically collect, analyze, and share data across the research community” (www.commondata elements.ninds.nih.gov/default.aspx). A set of items is

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being developed by an expert panel for use in SCI research (www.commondataelements.ninds.nih.gov/SCI.aspx). The current premium on consumer-oriented outcome measures acknowledges the importance of subjective reports of adjustment (although it does not necessarily convey respect for the psychological theories of adjustment). But it is congruent with the influential International Classification of Functioning, Disability and Health (ICF) developed by the World Health Organization (WHO, 2011). The ICF advocates a greater appreciation of the environmental context in which disability occurs, and it prescribes assessment of the degree to which an individual engages in desired activities and participates in normative social and personal roles (and of the environmental barriers and facilitators of activity and participation; Lollar, 2008). The ICF is not a psychological theory; it is best described as a “workable compromise between medical and social models” of disability (WHO, 2011, p. 5). Nevertheless, psychologists can easily operationalize “activities” and “participation” into constructs vital to psychology theories and interventions. Certain areas will continue to attract psychological input (e.g., depression), and others are likely to require leadership and initiative from psychologists (chronic pain). However, other outcomes of vital interest to consumers, such as return to work and employment, may be somewhat tangential to the core interests of most psychologists and thus require more collaborative roles on interdisciplinary teams (e.g., Ottomanelli & Lind, 2009).

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PART IV

Health Psychology Across the Life Span

CHAPTER 18

Child Health Psychology LAMIA P. BARAKAT, MATTHEW HOCKING, AND ANNE E. KAZAK

LEVELS OF RISK AND RELATED PSYCHOLOGICAL INTERVENTIONS 418 UNIVERSAL INTERVENTIONS 419 SELECTIVE INTERVENTIONS 421

INDICATED/CLINICAL INTERVENTIONS 426 CONCLUSIONS 428 REFERENCES 431

The field of child health psychology is broad, multifaceted, and multidisciplinary in nature. Encompassing the well-being of infants, children, adolescents, and young adults, it includes an emphasis on health (e.g., absence of disease, health behaviors and prevention), as well as illnesses and injuries (major and minor, chronic and acute). Child health psychology is unique as it draws from other specialized areas of psychology, including developmental, clinical, clinical child and adolescent, health, social, and family psychology. In collaboration with pediatricians, nurses, social workers, psychiatrists, and other health-care providers, child health psychologists screen and assess for a variety of issues (e.g., adherence, pain, medical stress and trauma, neurocognitive functioning) and design and implement interventions aimed at reducing distress, promoting adjustment, and maintaining health. Pediatric psychology offers a professional framework consistent with the themes of this child health psychology chapter. The Vision Statement of Division 54 (Society of Pediatric Psychology) of the American Psychological Association (APA) states:

injury; promotion of health and health-related behaviors; education, training and mentoring of psychologists and providers of medical care; improvement of health-care delivery systems and advocacy for public policy that serves the needs of children, adolescents, and their families. (www .societyofpediatricpsychology.org/who/)

Comprehensive integration across these multiple disciplines and emphases is beyond the scope of any one chapter. In the current summary of child health psychology, we integrate the diverse child health psychology assessment and intervention literature within the parameters of three focused basic assumptions (social ecology as organizing framework, resiliency of patients and families, and evidence-based assessment and intervention are essential for positive outcomes) and three levels of intervention (universal, selected, indicated/clinical) that we believe are crucial to advancing the health and well-being of children and their families. Basic Assumption 1 Children’s health and illness must be viewed contextually with the family as the central organizing framework . Consistent with systems theories, understanding children’s health and illness requires moving beyond conceptualizations focused on child-specific factors to larger systems that greatly influence child development (e.g., the family). Children live within a variety of systems and contexts that need to be considered. Bronfenbrenner’s (1979) social ecological model offers a useful framework for understanding the various contextual factors associated with children’s health and development. Originating from the

Pediatric psychology is an integrated field of science and practice in which the principles of psychology are applied within the context of pediatric health. The field aims to promote the health and development of children, adolescents, and their families through use of evidence-based methods . . . . Areas of expertise within the field include, but are not limited to: psychosocial, developmental and contextual factors contributing to the etiology, course and outcome of pediatric medical conditions; assessment and treatment of behavioral and emotional concomitants of illness, injury, and developmental disorders; prevention of illness and 413

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field of developmental psychology, social ecology has been applied to pediatric psychology (Kazak, Rourke, & Navsaria, 2009) to enhance understanding of the complex interrelations between childhood illness, the individual child, and the various systems involved in children’s everyday lives, including family members, peer networks, schools, and hospitals. Viewing child health and illness from a social ecological perspective highlights the multitude of influences on children’s adaptation to illness and identifies potential pathways to improve psychological and health outcomes for children. The model is typically presented as a series of concentric circles with the individual child in the center (Figure 18.1). Systems with more immediate interrelations (e.g., the family) with the child are situated within concentric circles closest to the child, while those systems with more distal connections to the child are positioned farther away. Within a health and illness framework, children rely upon their family to make treatment decisions, communicate with health-care providers and school personnel, and provide basic care and emotional support throughout the challenges associated with a particular chronic illness or health issue. Therefore, it is imperative that child health psychologists consider children’s illness and health status within the broader context of their family to facilitate optimal outcomes.

Culture Hospital

School

Religion

Parents Siblings

Law

CHILD

Social network

Family Illness Peers Neighborhoods Technology

Figure 18.1

Social Ecological Model

Social class

The model encompasses developmental processes and change and suggests that systems reciprocally interact over time in such a way that changes in one system affect other systems. Throughout a child’s development and illness experience, the family remains a central system, and various other systems are incorporated or removed, depending on the context or event. For example, survivors of childhood brain tumors may experience significant changes secondary to the tumor and related treatment (e.g., neurocognitive late effects) that affect relationships with family members and peers, require educational accommodations or continued medical intervention (e.g., endocrine dysfunction), and necessitate interactions with the legal system to establish disability services. Additionally, such systems have the potential to influence survivor psychosocial outcomes and quality of life by helping the survivor compensate for deficits or limitations (Hocking et al., 2011). Social ecology provides a means to understand not only illness and pathology associated with a child or family but also their strengths and competencies, and it highlights potential mechanisms for enhancing outcomes of children with chronic health conditions. For example, a child’s functional abdominal pain may be understood through increased child anxiety (Dufton, Dunn, & Compas, 2009), a parent’s own somatic complaints (Walker, Garber, & Greene, 1991), or inadvertent parental reinforcement of abdominal pain complaints (Walker, Garber, & Greene, 1993). However, child anxiety can be reconceptualized as strengths of conscientiousness and somatic awareness, and parental reinforcement of child abdominal pain can be reframed as caring and protecting. In this example, a child with functional abdominal pain can learn to employ cognitive-behavioral coping strategies to enhance active management of pain, and parents can be encouraged to reframe their role from protector to coach by promoting behavior incompatible with illness and facilitative of active child coping. Such intervention strategies have demonstrated success in reducing pain complaints and school absences in a sample of children with chronic abdominal pain (Robins, Smith, Glutting, & Bishop, 2005). Employing a social ecological framework as a child health psychologist necessitates assessment and screening tools that examine families’ responses to childhood chronic illness. Traditional measures of family functioning are not specific to the unique issues experienced by families affected by childhood chronic illness. A handful of well-established measures examine the negative impact of pediatric illness on families and caregivers, including the PedsQLTM Family Impact Module (Varni, Sherman,

Child Health Psychology

Burwinkle, Dickinson, & Dixon, 2004) and the Pediatric Inventory for Parents (Streisand, Braniecki, Tercyak, & Kazak, 2001), but do not assess families’ management of pediatric illness. The Family Management Measure (Knafl et al., 2011) is a promising measure that assesses parental perceptions of the family’s ability to manage and integrate aspects of the disease into everyday life. Social ecology suggests that intervention approaches should involve the family and other systems to obtain optimal outcomes. Although many intervention efforts in child health psychology have focused on the individual child, an increasing number of interventions are incorporating families (e.g., Epstein, Paluch, Roemmich, & Beecher, 2007; Kazak et al., 2004; Wysocki et al., 2006) and other systems (e.g., Ellis et al., 2005). This is a promising trend, and future interventions should include relevant systems to promote positive health outcomes. Basic Assumption 2 Stress-and-coping paradigms that highlight child and family competence and resilience, rather than deficits and psychopathology, define our understanding of child health psychology. Childhood illness is often conceptualized as a stressor or trauma with potential consequences for children and families’ short- and long-term functioning. The stressor may be associated with the illness itself (e.g., pain in sickle cell disease [SCD] and in recurrent headache) or with the required treatment (e.g., bone marrow aspirations in childhood cancer or blood glucose testing and insulin injections for type 1 diabetes). In addition, inherent in childhood illness is ongoing stress related to unpredictable, recurring trauma. Some childhood illnesses and their treatments lead to long-term medical stressors after children are considered cured, including late effects of cancer treatment, cognitive deficits associated with brain tumors, rejection in solid organ and bone marrow transplantation, and others require ongoing, long-term management (e.g., type 1 diabetes, Crohn’s disease, juvenile rheumatoid arthritis). While early research in child health psychology supported the view that chronic conditions in childhood resulted in psychopathology and poorer family functioning (Satterwhite, 1978), closer examination of the research methodologies indicated that samples were not representative and were based on families referred for psychological consultation and/or treatment. Using samples carefully recruited to reflect the complete spectrum of child and family functioning and matched comparison groups, a different picture began to emerge. Relatively few consistent

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differences were identified between families with and without children with chronic conditions (Barakat & Linney, 1992; Kazak & Marvin, 1984; Kazak, Reber, & Snitzer, 1988). Key findings when comparing families with and without children with a chronic pediatric illness are that mothers of children with chronic illness show evidence of increased distress but not psychopathology; fathers, often underrepresented in research (Seagull, 2000), experience less distress than mothers but show ongoing psychological reactions to their child’s illness; children with an illness and their siblings evidence the complete range of emotional, social, and behavioral concerns as other children, although children whose illness and/or treatment are linked to central nervous system damage have more difficulty adjusting over time; and children and parents report positive outcomes or posttraumatic growth. Thus, illness is associated with vulnerabilities or risks for children and their families but also creates opportunities for growth and resilience. From the literature on posttraumatic stress in the context of chronic medical conditions of childhood, most children and families experience distress at diagnosis and initial stages of treatment, and distress reduces over time (although a small subsample experience increasing distress) (Kazak, Penati, Brophy, & Himelstein, 1998; Landolt, Buehlmann, Maag, & Schiestl, 2009; Stuber et al., 1997). Within childhood cancer, survivors and their siblings, mothers, and fathers experience subclinical levels of posttraumatic stress symptoms well after the conclusion of treatment (Alderfer, Labay, & Kazak, 2003; Barakat et al., 1997; Rourke, Hobbie, Schwartz, & Kazak, 2007). Concurrent with posttraumatic stress but in contrast to distress, survivors of cancer and their parents report experiencing growth or positive changes in themselves, their relationships, and their life goals following cancer and treatment (Barakat, Alderfer, & Kazak, 2006; Currier, Hermes, & Phipps, 2009; Phipps, Long, & Ogden, 2007). Barakat, Alderfer, and Kazak (2006) found that 84% of their sample of teen survivors of cancer, 90% of their mothers, and 80% of their fathers reported at least one positive change after cancer. Posttraumatic stress was significantly correlated with posttraumatic growth for these survivors. In preliminary studies of their Benefit Finding Scale (Currier et al., 2009; Phipps et al., 2007), benefit finding was associated with optimism and self-esteem, and benefit finding and perceived burden of cancer were both likely outcomes of cancer diagnosis and treatment. Importantly, a significant portion of children with cancer show exceptional adaptation and function better than matched peers, explained in part by repressor adaptive style (low anxiety,

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high social desirability/defensiveness) (Jursberg, Russell, Long, & Phipps, 2008; Phipps, 2007). Recognizing risks and vulnerabilities while focusing on competence has been a helpful pathway in guiding child health psychology. Through stress-and-coping models, demographic (child age and gender), disease/functionality (severity, course, brain involvement), intrapersonal (temperament, coping strategies, health beliefs), and interpersonal variables (family functioning, social support) are key predictors of child and family functioning (Wallander & Thompson, 1995). A survey of findings across a range of childhood conditions provides support for the basic assumption that illness, child, and family factors affect the psychosocial functioning of children with chronic illness and their families (e.g., Barakat et al., 2007; Barakat, Marmer, & Schwartz, 2010; Bleil, Ramesh, Miller, & Wood, 2000; Kelch-Oliver, Smith, Diaz, & Collins, 2007). In a cross-sectional study of children with asthma, Bleil and colleagues (2000) tested two competing hypotheses: (1) quality of the parent–child relationship moderates the association of illness-related functional status with child depression and (2) parent–child relatedness mediates the association of functional status with depression. Results supported the mediator model with mothers; functional status was associated with quality of the mother–child relationship, which in turn was associated with depressive symptoms in children with asthma. There were no significant results involving the father–child relationship. These data suggest specific targets for intervention (mother– child relationships) when working to improve the wellbeing of children with chronic medical conditions. To more fully appreciate adaptational processes, examination of stress, coping, and health and psychosocial outcomes through prospective studies is necessary. Kupst and colleagues’ (1995) examination of the adaptation of children diagnosed with cancer and their families stands out as one of the first and longest prospective studies, following families up to 10 years postdiagnosis and highlighting the importance of parental coping in survivor adaptation. Our own work with childhood cancer (Kazak & Barakat, 1997) supports the association of parenting stress and children’s quality of life during treatment with well-being of children and their parents posttreatment. Clay, Woo, Frank, Hagglund, and Johnson (1995), using growth modeling statistical procedures to examine data from a prospective study of adaptation in 16 children with juvenile rheumatoid arthritis (JRA), 40 children with type 1 diabetes, and 56 healthy children, found substantial individual variation in adaptation over time, with parental adjustment and family functioning linked to changes in adaptation.

Findings from these studies support the increased focus in child health psychology research on developing assessment measures and testing interventions based on this broad and solid foundation of descriptive and explicative stress, coping, and adaptation research. Basic Assumption 3 Evidence-based assessment and intervention are essential to positive outcomes. Pediatric psychologists conduct evidence-based assessments and apply interventions with established effectiveness to problems that children and families face around health- and illness-related issues. Changes in health-care and increased demands for showing the effectiveness of treatments have accelerated efforts to utilize effective treatments more routinely and to communicate with patients, families, and multidisciplinary health-care providers about treatment options. Evidence-Based Assessment The first step in clinical practice is to ascertain the nature and extent of potential problems and to identify strengths that individuals and families possess in order to select and monitor treatment. In recent years, the amount of information available to guide the selection of assessment approaches has increased substantially. The measures available relate to problems in these populations that may be unique (e.g., pain, adherence to treatment, healthrelated quality of life, and functional abilities) while also having similarities with concerns faced more generally by children (e.g., cognitive functioning, social and emotional adjustment, stress and coping, family functioning). A resource in formulating an assessment process is a series of systematic reviews of evidence-based assessment in a special issue of the Journal of Pediatric Psychology (Cohen et al., 2008). Common criteria were utilized to identify assessment measures that were well established, approaching well established, or promising, based on the number of peer-reviewed publications by independent investigative teams, availability of materials for evaluation and replication, and psychometric properties. Well-established measures in child health psychology provide options for evaluating the effectiveness of treatment across a broad range of presenting problems. One exemplar is transplantation, where psychosocial evaluations are considered necessary for optimal care. Transplantation has become the treatment of choice for children with end-stage disease, largely because of the availability of effective immunosuppressive agents (Stuber & Canning, 1998), and solid organ transplants (such as kidney,

Child Health Psychology

cardiovascular, and liver), and stem cell transplants are the most common pediatric transplants in children and adolescents. Psychosocial assessment in pediatric solid organ and bone marrow transplants is approached on multiple levels (patient, family, and health-care context) and over three phases of transplant: pretransplant, transplantation, and posttransplant (Stuber & Canning, 1998). Pretransplant assessment is a method for anticipating problems with adjustment to the transplant and adherence to required hospitalization and medical interventions. Specifically, psychologists conducting pretransplant assessments may select from a range of evidence-based tools that focus on child and parent psychological adjustment, the child’s cognitive functioning as it affects the ability to understand and adhere to treatment, the availability of social support during the hospitalization, understanding of the transplant and commitment to the procedure by the child and at least one parent, and current and past treatment adherence issues (Shaw & Taussig, 1999). In addition to assessment focused on specific problems, there are fairly consistent risk factors associated with ongoing and even escalating difficulties for the child and family, across a range of pediatric health conditions based on social ecology such as characteristics of the child (age/developmental stage, temperament, behavior and adjustment pre-illness), aspects of the illness and treatment (diagnosis, type of treatment, days in the hospital, neurocognitive involvement), adjustment of family members and family functioning, social support, and parental beliefs about the child’s treatment. More distal to the child are schools (continuity in education, learning problems, provision of appropriate accommodations) and aspects of the broader ecology, specifically language, culture, and socioeconomic status (e.g., lower SES, families whose native language is not English, family and neighborhood influences on health; Chen & Paterson, 2006). Each of these factors can influence the child and family’s adaptation to the illness and treatment and longer-term well-being. Importantly, across these areas, evidencebased treatments may be applied to address identified problems or in a preventative approach to build knowledge, skills, and supports to reduce or avert the development of a clinically significant problem. The process of assessment requires a broad evaluation of well-being and risk, while capturing more focal areas of concern. That is, the child and family may have ongoing problems not directly related to the current illness (e.g., living in an economically impoverished neighborhood). It is important to know and appreciate the potential impact of these factors

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on health and at the same time provide feasible interventions to augment clinical care and patient outcomes (e.g., interventions to increase coping with pain or anxiety). Indeed, although there are a number of instruments that assess specific difficulties (e.g., depression, pain, anxiety), there are fewer scales available to identify families at psychosocial risk (Barakat & Alderfer, 2011). The Psychosocial Assessment Tool (PAT; Pai et al., 2008) is a screener based on social ecological theory that provides an assessment of psychosocial risk across relevant domains of the social ecology, such as family structure, resources, family problems, and problems associated with the child (patient) and other children in the family. The PAT is linked to the Pediatric Psychosocial Preventative Health Model (PPPHM; Kazak, 2006), a conceptual model of psychosocial risk that can be used to guide the selection of evidence-based interventions based on the assessment process. While screening is seen as a generally important and helpful approach to providing early and appropriateto-risk services, screening is often difficult to accomplish because of the lack of validated measures and the difficulties of showing that screening can be completed quickly and without additional burdens on patients, families, or staff. Screeners like the PAT, which are brief and can be integrated into pediatric practice, are promising ways of assuring linkages between evidence-based assessment and intervention (Kazak et al., 2011). Evidence-Based Intervention Like medicine and psychology in general, evidence-based intervention approaches are available and essential to optimal care for pediatric patients and their families. Guided initially by the empirically supported treatments guidelines of Division 12 (Clinical Psychology) of the American Psychological Association (APA; Chambless & Hollon, 1998), Division 54 (Society of Pediatric Psychology) modified the requirements to better fit pediatric psychology (e.g., small samples reflecting low base-rate conditions, interventions delivered in health-care settings, emerging treatments in innovative areas of practice), reviewed, and summarized treatments in a series of review papers in the Journal of Pediatric Psychology on the following topics: procedure-related pain; disease-related pain; recurrent headache; recurrent abdominal pain (RAP); disease-related symptoms in asthma, diabetes, and cancer; feeding problems; obesity; nighttime enuresis; encopresis and constipation; and sleep difficulties (Spirito, 1999). The well-established and promising treatments reported in these reviews were subsequently updated by Spirito and Kazak (2006) in the areas of headache, procedural

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pain, enuresis, feeding problems, obesity, asthma, chemotherapy-related distress, and pediatric sleep problems. Many of these interventions focus on behavioral or cognitive-behavioral approaches and are user-ready for clinicians. Evidence-based interventions in pediatric psychology have continued to grow and diversify over the past decade. Meta-analyses support the efficacy of strategies that combine treatment components, particularly educational and behavioral approaches (Graves, Roberts, Rapoff, & Boyer, 2010; Kahana, Drotar, & Frazier, 2008; Wu & Roberts, 2008), including increasing utilization of Internet-based approaches (Stinson, Wilson, Gill, Yamada, & Holt, 2009). As in other areas of evidence-based practice, challenges to implementing evidence-based practice must be addressed, with particular attention to the coordination of care for children across relevant systems (Kazak et al., 2010).

LEVELS OF RISK AND RELATED PSYCHOLOGICAL INTERVENTIONS The application of psychological practice across a wide range of child health domains suggests the need for a broad framework for understanding psychological child health interventions. Often, psychological practice in child health is associated with more severe and/or long-standing adjustment problems. That is, a threshold exists for when a child with diabetes, recurrent headache, or cancer is referred to a psychologist (either internal or external to the health-care setting) for treatment of a disease- or treatment-related concern. Other approaches (e.g., behavioral and cognitive-behavioral interventions) may be clinically indicated but also have application in reducing the likelihood of ongoing psychological distress under conditions of established duress (e.g., medical procedures). Alternatively, in the realm of primary prevention, psychologists have contributed to the literature on injury prevention. If psychological practice is to continue to be increasingly integrated into child health care, such blueprints for the provision of effective and cost-efficient psychological interventions to pediatric populations will be critical. The PPPHM (Kazak, 2006) is a competency-based model that organizes child health psychology research and practice (see Figure 18.2). It is modeled after prevention guidelines from the National Institute of Mental Health and the public health–derived categories of universal, selected, and indicated/clinical. Any patient group, whether broad (e.g., all patients at a children’s hospital,

Clinical • Persistent and/or escalating distress • High risk factors

Consult behavioral health specialist.

Targeted • Acute distress • Risk factors present

Provide intervention and services specific to symptoms. Monitor distress.

Universal Children and families are distressed but resilient

Provide general support—help family help themselves. Provide information and support. Screen for indicators of higher risk.

Figure 18.2 PPPHM: Levels of risk and implications for intervention approaches Source: A. E. Kazak, © 2005, Center for Pediatric Traumatic Stress.

all patients followed in an outpatient pediatric practice) or narrow (e.g., patients seen by a subspecialty clinic such as oncology, cardiology, adolescent medicine), includes individuals representing a range of psychological functioning. The underlying level of psychosocial risk may be determined by assessing risks (and resiliencies) across the child’s social ecology. Categorization of a family’s risk at each of these levels has different implications for the delivery of evidence-based care.

Universal Most families maintain well-being by coping adaptively with the disruption and distress associated with childhood chronic illnesses. For example, in childhood cancer, psychological adjustment improves over the first 12 to 18 months after diagnosis, irrespective of whether an intervention is provided (Kazak et al., 1998), and psychological adjustment of children improves in the first year after heart transplantation (Todaro, Fennell, Sears, Rodrigue, & Roche, 2000). These children and families were most likely functioning within normal limits prior to the health crisis, and their underlying psychological resilience and family resources help to assure recovery from the stressors associated with childhood illness and treatment. To draw a parallel with the preventive, public health model, like having fluoride in drinking water, these families benefit from the most general types of psychosocial support available in the hospital, clinic, and community setting and function well with that level of intervention. The universal group represents the largest of the three proposed

Child Health Psychology

groups affected by pediatric health problems. Interventions discussed under universal interventions, child health psychology in primary care, and prevention of unintentional injury may be described as preventive efforts targeting a population of children who are not necessarily at high risk for illness or psychological problems. Although all interventions in child health require the collaboration of psychologists with families, pediatricians, teachers, and others, universal interventions are defined by interdisciplinary collaborations and are most successful when implemented on multiple levels from the individual and family to the community and policy initiatives. Selective Selective interventions target children at moderate risk for psychological difficulties due to stressful aspects of the required treatment regimens or because of intense, recurring pain associated with their illnesses. Children with cancer, for example, experience repeated painful procedures in their treatment regimens. Children with SCD and children with chronic and recurrent abdominal pain experience pain as part of the illness process. Adherence is of concern for all children requiring medical treatment but particularly for children with daily, intensive regimens such as children with type 1 diabetes and children with asthma. Family factors, such as child behavior problems, marital strain, or financial considerations that predate a child’s health concern, may result in parental expression of intense and sustained levels of anxiety, exceeding that usually seen in parents of patients. These families may be at risk for problems with adherence (e.g., assuring that a child with behavior problems takes medication regularly, transportation difficulties that result in irregular attendance at outpatient visits) and are likely to benefit from more intensive interventions. Indicated/Clinical Some children and families show more obvious psychological difficulties and are at high risk due to the illness itself or several sociodemographic, intrapersonal, and family and social risk factors. These families may have preexisting psychological difficulties (or psychopathology), be in the midst of divorce, or have recent life changes that tax their coping abilities. They may also have a long-term history of difficulty in managing a pediatric illness (e.g., a child with diabetes in which maintaining desirable blood glucose has been erratic or a child with SCD with repeated hospitalizations for pain). In this chapter, we focus our

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discussion around life-threatening conditions with treatment regimens or long-term effects of sufficient severity that intervention is indicated in most cases; these are pediatric overweight/obesity and childhood brain tumors. While small in number, indicated/clinical families tend to utilize a large proportion of hospital resources and necessitate intensive and sustained intervention, often involving multiple members of the health-care team.

UNIVERSAL INTERVENTIONS Interventions in primary care settings and prevention of unintentional injuries are examples of universal interventions aimed at improving functioning and preventing chronic health conditions among healthy children. Interventions in Primary Care Settings Pediatricians in primary care settings are charged with the dual tasks of caring for children with chronic medical conditions and promoting children’s health and well-being. In addition to addressing barriers to adherence and promoting health behaviors, pediatricians routinely address caregivers’ questions and concerns regarding their children’s development and behavior, with about 50% of visits to pediatricians focused on emotional, behavioral, or school problems (Willen, 2007). Because of their expertise, child health psychologists are uniquely positioned to shed light on these pediatric primary care issues. Collaborations among psychologists and pediatricians in primary care settings have a long history, although full integration in primary care settings has not yet been realized (Stancin, Perrin, & Ramirez, 2009). Schroeder (1999) outlined collaboration between pediatric psychologists and pediatricians focused on assessment and intervention for a host of issues, from developmental concerns to psychological conditions and from adherence to prevention. These collaborations, although not without their difficulties, resulted in satisfactory outcomes from pediatrician, psychologist, and family perspectives. Empirical studies of psychology consultation suggest that short-term interventions in primary care settings are often behavioral in approach and are associated with improved behaviors and parent satisfaction. Kanoy and Schroeder (1985), in an early prospective study, reported on the effectiveness of brief interventions with parents, provided by telephone or in person through a primary care practice. They found that parental education regarding appropriate expectations for developmental concerns

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and suggestions of specific behavioral interventions to address negative behaviors and socialization problems were viewed as most effective by parents. However, some parent concerns lingered at the time of the 1-year followup, particularly in the area of sibling and peer problems, suggesting that ongoing interaction with families may be needed for maintenance of improvements. Sobel and colleagues summarized information collected from 100 patients (age 1–19) and parents seen in two primary care outpatient clinics (Sobel, Roberts, Rayfield, Barbard, & Rapoff, 2001). Most (80%) of the patients were treated with short-term (one to five sessions) behavioral interventions. Improvements in the presenting problem were noted, and parents were satisfied with the service. Across these studies, the most frequent reasons for referral were disruptive behaviors (temper tantrums, aggression, noncompliance, and sibling fighting, as well as attentiondeficit/hyperactivity disorder), concerns about anxiety and depression, and developmental issues (sleep problems, toilet training, learning problems). Sleep problems are among the most frequent behavioral concerns seen by pediatricians and referred to psychologists in primary care settings, are persistent, and are associated with child cognitive and behavioral problems, as well as parental distress (Mindell, Telofski, Wiegand, & Kurtz, 2009). Sleep problems, which occur in about 20 to 30% of young children, include bedtime problems (bedtime refusals and inadequate enforcement of bedtime rules by parents) and nighttime awakenings (sleep-onset associations involving presence of parents must be re-created during typical nighttime arousal) (Mindell, Kun, Lewin, Meltzer, & Sadeh, 2006). In a review of 52 studies of behavioral interventions for sleep problems, Mindell and colleagues (2006) report that 82% of children improved through treatment, with the strongest evidence from randomized trials for use of extinction (ignoring attentionseeking behaviors after child is put to bed at night) and parent education about positive sleep habits and prevention of sleep problems. Also supported were graduated extinction (incorporates check-ins over increasing intervals), use of positive bedtime routines (same quiet activities in same order prior to bedtime each night), and scheduled awakenings (waking child shortly before typical awakening during night). In a recent study, Mindell and colleagues (2009) documented improved sleep across a number of sleep indicators and improved maternal mood following instruction on using a bedtime routine compared to a control group. In summary, multicomponent behavioral interventions are efficacious in the treatment of sleep problems and night awakenings among infants and young

children (Mindell et al., 2009), and these short-term interventions are feasible within the primary care consultation model (Moon, Corkum, & Smith, 2011). Child health psychology has an important role to play in effectively screening and treating emotional and behavioral problems to promote the health and well-being of children seen in primary care settings. To enhance provision of these services, models that support collaboration of pediatricians with child health psychologists are necessary (Stancin et al., 2009). Prevention of Unintentional Injuries Injuries are the major causes of death and disability for children. As a result of injuries, approximately 22,000 children and adolescents die each year; 7 to 8 times more are permanently disabled and require continued care. Injuries account for 15% of medical spending in pediatrics (Miller, Romano, & Spicer, 2000). The most common and costly causes of injuries are falls, motor vehicle accidents (pedestrian, bicyclist, or occupant), poisonings, and fire and burns (Kronenfeld & Glik, 1995; Miller et al., 2000). Type of injury depends on child age due to development of motor skills and cognitive abilities: Infants are more likely to die of asphyxiation; preschool-age children from falls; schoolage children from pedestrian accidents, drowning, or fire; and adolescents from motor vehicle accidents (Schnitzer, 2006). Factors that place children at risk for unintentional injuries are best characterized as related to one’s behavior (e.g., age, gender, temperament, low inhibitory control, estimation of physical ability) or environment (e.g., low socioeconomic status and unsafe physical environment) (Finney et al., 1993; Kronenfeld & Glik, 1995; Miller et al., 2000; Schwebel & Plumert, 1999). The term injury allows for empirical consideration of contributing factors and preventive interventions and is preferred over the term accident, which implies fate, luck, or uncontrollable forces. Prevention efforts, targeting increased safe behaviors, decreased risky behaviors, and increased safety of the environment, have generally been shown to be cost-effective (Miller et al., 2000). Education of the parent and having the parent make rules is not enough to reduce the risk of injury for children, in part because having information does not necessarily lead to changes in injury-related behaviors (Finney et al., 1993). Even if behaviors are modified and attempts to apply rules are made, rules cannot be generated for all of the unusual and unexpected accidents that lead to injury in children (Hillier & Morrongiello, 1998; Peterson & Saldana, 1996). Therefore, successful

Child Health Psychology

prevention efforts are aimed at both active behavior change and environmental change (Finney et al., 1993) and are implemented on multiple levels: individual/family, community, and population/policy. Prevention programs for unintentional injuries target knowledge, skills, and behaviors, as well as safety of environments, and occur at multiple levels. At the individual/child level, school-based programs delivered by teachers have been shown to improve knowledge of safety and safety skills particularly for fire and burn safety and among younger children (Kendrick et al., 2007). Actual safety behaviors, however, are less likely to improve with these programs. In contrast, parenting interventions aim to prevent unintentional injuries by enhancing parent safety behaviors. From a recent meta-analytic review, overall reduction in unintentional injuries for young children was documented for randomized trials of protocol-based parenting interventions to improve knowledge, skills, and attitudes (Kendrick, Barlow, Hampshire, Stewart-Brown, & Polnay, 2008). Intensity of parenting interventions varies from education during well-child visits to home visitation programs. Nansel and colleagues found that tailored safety information, contrasted with generic information, during well-child visits increased safety behaviors by parents of young children (Nansel, Weaver, Jacobsen, Glasheen, & Kreuter, 2008). Helping families make home environments more secure for their children, using education, modeling, and feedback through home visitation programs, has also shown measured success (see Odendaal, van Niekerk, Jordaan, & Seedat, 2009; Roberts, Fanurik, & Layfield, 1987; Swart, van Niekerk, Seedat, & Jordaan, 2008). For example, in an effort in South Africa targeting low-income households with young children, assessment of household risks was followed by a series of home visits to educate parents on child development, burns, poisoning, and falls, with emphasis on environmental changes (Odendaal et al., 2009; Swart et al., 2008); the intervention was associated with reduction in risk of burns and poison ingestion but not falls. At the community level, prevention aimed at environmental change has significantly affected the health and safety of children. Community standards for safe surface areas in playgrounds, policies regarding toy safety, and the use of child-proof caps on medications illustrate environmental changes that have reduced accidents and injuries among children (Finney et al., 1993). A notable example of moderate success in prevention efforts aimed at behavior change is the use of child restraints to reduce morbidity and mortality associated with motor vehicle accidents (Klassen, MacKay, Moher, Walker, & Jones, 2000).

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Although important attention to prevention of unintentional injuries is a cornerstone of the pediatric psychology literature, a number of questions remain about how to best provide multicomponent interventions to improve safety knowledge, attitudes, skills, and behaviors. Psychologists are challenged to develop programs with impact on larger portions of the population by better understanding the factors that lead to behavior change and the mechanisms in action between risk factors and injuries (Finney et al., 1993). SELECTIVE INTERVENTIONS Selective interventions comprise efforts to reduce pain and distress associated with chronic health conditions and improve management of chronic health conditions and aim to improve physical functioning, health-related quality of life, and other psychosocial outcomes. Treatment Adherence Despite the serious consequences of not adhering to prescribed medical regimens, nonadherence is strikingly common among children and adolescents with a chronic medical condition. In general, 50% of youth with a chronic illness do not adequately adhere to their treatment regimens (Rapoff, 1999). In addition to not taking medications as prescribed, nonadherence includes treatment-related behaviors such as attending clinic appointments, refilling prescriptions, and other disease-specific tasks (e.g., diet changes, checking blood sugars). The impact of nonadherence is significant (Pai & Drotar, 2010) and can result in the exacerbation of disease-related symptoms, higher rates of health-care utilization, poorer quality of life, and increased risk of complications and death (Drotar, 2000). Given the consequences of nonadherence and the increased number of youth surviving serious illness with the aid of modern medical regimens, researchers are examining the factors associated with adherence and developing interventions to improve rates of adherence. Research on adherence, however, is complicated by the challenging issues associated with accurately and reliably measuring adherence and by the multiple and varied factors that influence how well youth with chronic illness follow their treatment regimens. Self-reports are widely used for their low costs and ease of administration but often provide overestimates of adherence (Rapoff, 1999). Diary methods implementing brief recall periods (e.g., 24 hours) show promise in obtaining more accurate data but are often time-consuming in terms of

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collecting and scoring data (Quittner, Modi, Lemanek, Ievers-Landis, & Rapoff, 2008). Advances in technology have allowed increased use of electronic monitoring devices. Such devices record each instance a pill bottle is opened or an inhaler is used and generally enhance the accuracy and reliability of adherence data, but they are expensive, may malfunction, and do not account for times when the bottle was opened but medication was not taken (Quittner et al., 2008). Consistent with the systems view of health presented earlier in this chapter, child developmental and psychological factors, family variables, patient- or treatment-related barriers, health care system issues, and socioeconomic and cultural factors all may contribute to levels of adherence (La Greca & Mackey, 2009). Among youth in general, adolescents are less adherent to treatment regimens than younger children because of less parental involvement in some treatment-related tasks (La Greca, 1998) and a desire to not appear different from peers (Simons, McCormick, Devine, & Blount, 2010). Conversely, children and adolescents with higher levels of shared responsibility for adherence tasks among family members show better rates of adherence across different disease and ethnic groups (Hsin, La Greca, Valenzuela, Moine, & Delamater, 2010; Reed-Knight, Lewis, & Blount, 2011; Walders, Drotar, & Kercsmar, 2000; Wysocki et al., 2009). Child psychological adjustment also has been related to treatment adherence, with poorer psychological functioning generally being associated with worse adherence (La Greca & Mackey, 2009) for both externalizing and internalizing symptoms (Modi & Quittner, 2006; Naar-King et al., 2006). However, this association is not always clear-cut. For example, studies offer conflicting evidence regarding state anxiety among different disease groups, with higher levels predicting less frequent blood glucose monitoring in adolescents with type 1 diabetes (Herzer & Hood, 2010) but better adherence over time in recipients of solid organ transplants (Wu, Aylward, & Steele, 2010). Disease- and treatment-related cognitions have been related to adherence and are potential targets for interventions aimed at improving adherence. In a sample of adolescents with cystic fibrosis, adolescent beliefs about chest physiotherapy and antibiotic treatments were associated with adherence to these treatment tasks (Bucks et al., 2009). Specifically, those who did not feel they needed or benefited from these treatments demonstrated poorer adherence. Similarly, adolescents with inflammatory bowel disease who perceived their disease as being more severe, and presumably less likely to be affected by medication, demonstrated worse adherence to oral

prescription medications (Reed-Knight et al., 2011). Such results suggest that illness- and treatment-related feelings of hopelessness are risk factors for poor adherence. In addition to the importance of family involvement in the daily management of adherence tasks (e.g., Wysocki et al., 2009), several other family factors influence adherence to treatment. Relationship quality and family conflict are two important family factors that have been related to youth adherence. Several studies have highlighted the negative influence of family conflict surrounding treatment-related tasks on adherence (e.g., Ingerski, Anderson, Dolan, & Hood, 2010; Lewandowski & Drotar, 2007; Reed-Knight et al., 2011). In a study with older children and adolescents with cystic fibrosis involving observations of family discussions of contentious issues, poor observed relationship quality between family members was associated with worse self- and parent-report adherence (DeLambo, Ievers-Landis, Drotar, & Quittner, 2004). Other family factors associated with adherence include family cohesion and communication (Hauser et al., 1990; Wysocki, 1993), parental empathy (Lloyd, Cantell, Pacaud, Crawford, & Dewey, 2009), family support for treatment tasks (La Greca & Bearman, 2002), spousal support for mothers (Lewandowski & Drotar, 2007), caregiver adjustment (Bartlett et al., 2004), and beliefs about treatment (Riekert et al., 2003). Research also has examined barriers that interfere with optimal adherence, health-care delivery issues, and socioeconomic and cultural factors. Common barriers include forgetting (Ingerski, Baldassano, Denson, & Hommel, 2010; Modi & Quittner, 2006; Simons et al., 2010), lack of organization and planning for taking medications (Modi & Quittner, 2006; Simons et al., 2010), complex treatment regimens (La Greca & Mackey, 2009) and regimens that interfere with activities (Ingerski, Baldassano, et al., 2010), and side effects, including changes to appearance (Simons et al., 2010). Additionally, poor physician–patient communication and rapport have been linked with lower rates of adherence (La Greca & Mackey, 2009). With changing demographic trends, investigations are beginning to explore both socioeconomic and cultural factors that affect adherence. Youth from lower-income families and who belong to ethnic minorities are at risk for poorer levels of adherence and increased morbidity (NaarKing et al., 2006; Rohan et al., 2010). A recent study with Hispanic children and adolescents with type 1 diabetes found that youth from families who were less acculturated to the U.S. culture had better adherence (Hsin et al., 2010). Additional research is needed that addresses the socioeconomic and cultural factors that influence adherence.

Child Health Psychology

Building from the research examining predictors of nonadherence, a growing body of work has attempted to improve adherence to medical regimens through a variety of intervention approaches, including educational, behavioral, and those that incorporate multiple components. Two recent meta-analyses have examined the effectiveness of these intervention approaches on adherence (Graves et al., 2010; Kahana et al., 2008). Educational interventions generally rely on providing information on the illness and the treatment regimen and tend to produce small improvements in adherence. Behavioral strategies apply behavioral principles to enhance adherence behaviors and have stronger effects on adherence, with medium effect sizes seen in meta-analyses. Multicomponent interventions generally combine educational and behavioral strategies, target multiple facets that potentially affect adherence (e.g., family functioning, social support), and also demonstrate medium effects on adherence. Two effective multicomponent intervention approaches that target multiple levels of the social-ecological model of child health have been tested in youth with type 1 diabetes. Wysocki and colleagues have adapted behavioral family systems therapy for adolescents with type 1 diabetes (BFST-D; Wysocki et al., 2006, 2007). BFST-D is a 12session intervention delivered over 6 months that includes both adolescents and caregivers. It incorporates elements of problem-solving training, communication skills, cognitive restructuring, and structural family therapy, and works to improve family problem solving and communication. Following an initial series of randomized trials (Wysocki, Greco, Harris, Bubb, & White, 2001), BFST-D was revised to include more diabetes-specific behavioral components. Compared to standard care and an educational support group, the revised BFST-D obtained significant improvements in adherence, metabolic control, and family conflict, particularly in those with poor metabolic control (Wysocki et al., 2006, 2007). Multisystemic therapy (MST) is another intervention approach based on systems theory that has been tested in youth with type 1 diabetes with a history of poor metabolic control (Ellis et al., 2005; Ellis, Templin, NaarKing, Frey, & Cunningham, 2007). Adapted from an existing intervention approach with adolescents with severe behavioral and emotional difficulties, the strengths of this multifaceted intervention include coordinating efforts across systems (e.g., individual, family, school, peer, and health-care provider) to enhance adherence. For example, MST promotes increased parental involvement in diabetes care tasks, targets family–school communication about the treatment regimen, enlists peer support for adherence, and

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strengthens family–physician working relationships (Ellis et al., 2005, 2007). In a randomized controlled trial, participants receiving MST demonstrated improvements in blood glucose testing and metabolic control and decreased inpatient admissions at the end of therapy compared to a control group (Ellis et al., 2005). However, only individuals from two-parent families maintained these gains at 6-month follow-up, suggesting the importance of bolstering caregiver support in the management and monitoring of diabetes tasks (Ellis et al., 2007). Given that multicomponent interventions produce the most robust effects on adherence (Kahana et al., 2008), additional research on BFST and MST is warranted across multiple illness groups to further refine these treatment approaches. Specifically, it is recommended that the effectiveness of interventions with particular patients and their families be assessed in prospective studies that employ primarily objective measures of adherence. Management of Pain and Distress The biobehavioral model of pediatric pain (Varni, Blount, Waldron, & Smith, 1995) serves as a useful framework for guiding pain assessment, developing interventions for disease-related pain, and understanding the targets of the intervention studies reviewed in this section. This model places pain (perception and behaviors) in the context of precipitants and intervening variables on the one hand and functional status outcomes on the other. The precipitant may be unpredictable disease-related pain, as in vaso-occlusive episodes in SCD or gastrointestinal pain, or predictable pain due to procedures such as bone marrow aspirations in childhood cancer and needlesticks for blood tests, insertion of IV for provision of fluids, or blood transfusion in SCD. The intervening variables are cognitive appraisal of pain and one’s ability to affect pain, coping strategies for handling pain and painful procedures, and perceived social support. Finally, pain perception and behaviors influence and are affected by functional status, including school attendance, depression and anxiety symptoms, behavior problems, and interpersonal relations. Based on the biobehavioral model, Varni and colleagues (1995) recommended that interventions move beyond narrowly focused strategies aimed at decreasing reports of pain to target pain perception, pain behaviors, and the intervening variables. Pain interventions are most easily conceptualized as cognitive (altering beliefs) and behavioral (targeting specific behaviors using principles of learning and behavioral science) (Uman, Chambers, McGrath, & Kisely, 2008). Modifying pain

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perception involves self-regulatory mechanisms such as self-hypnosis, meditative breathing, progressive muscle relaxation, and guided imagery. Furthermore, by targeting intervening variables, such as coping strategies and parent behaviors, children and their parents may be supported in adaptively managing painful aspects of treatment or of the illness itself, thereby improving functional status outcomes as well as reducing pain perception. Coping strategies, such as seeking social support, active behavioral distraction, problem solving, and self-instruction or self-talk, may be most adaptive for children with chronic medical conditions. Varni and colleagues (1995) noted that parent appraisals of the illness and of pain, parent coping, and family functioning influence parent interactions with their children during painful procedures (and painful episodes) as expressed through parent distress and anxietypromoting behaviors. These parent behaviors, in turn, affect children’s coping and children’s pain perception and behaviors. Recent research in pediatric SCD provides support for this explanation. In a sample of adolescents, Barakat and colleagues (Barakat et al., 2007; Barakat, Patterson, Daniel, & Dampier, 2008) found that family variables explained health outcomes (including pain complications) prospectively and parenting stress mediated the association of disease-related pain with health-related quality of life. As such, parent or family factors must be addressed as an integral element of effective interventions. Interventions for Disease-Related Pain Sickle Cell Disease (SCD) The incidence of SCD in the United States is one in every 400 to 500 live births for the African American population, in which SCD is most prevalent (Lemanek & Ranalli, 2009). SCD is a group of hematological disorders that are inherited and chronic, and interfere with hemoglobin production. Complications of SCD include recurrent episodes of severe pain in the lower extremities, back, abdomen, and chest referred to as vaso-occlusive episodes; infections; anemia; small stature; splenic changes; and stroke. Treatment may involve administration of analgesic medication on an inpatient or outpatient basis to control pain, prophylactic antibiotics to reduce susceptibility to infections, folic acid supplementation to help red cell production, regular follow-up and early identification and treatment of symptoms, and blood transfusion. On average, school-age children with SCD experience at least one to two pain episodes a month and one to two hospital admissions and/or one emergency department visit a year, and they miss significant amounts of school on pain days (Dampier, Ely,

Brodecki, & O’Neal, 2002; Shapiro et al., 1995). The unpredictable nature of SCD and its treatment, including frequent hospitalizations and school absenteeism, potentially limit functional abilities and health-related quality of life and disrupt psychosocial development (Lemanek & Ranalli, 2009; Palermo, Schwartz, Drotar, & McGowan, 2002; Panepinto, O’Mahar, DeBaun, Loberiza, & Scott, 2005). Although many children and adolescents with SCD are resilient (e.g., Noll, Reiter-Purtill, Vannatta, Gerhardt, & Short, 2007), these youth may be at risk for problems in psychosocial functioning. Adolescents with SCD seem to be especially vulnerable to disturbances in behavior, social adjustment, and dissatisfaction with body image (see Barakat, Lash, Lutz, & Nicolaou, 2006, for a review.) Because intermittent, unpredictable, and at times intense acute and chronic pain is the most common symptom of SCD, pain management is a focal issue for children with SCD, their families, and their health-care providers. Most sickle cell pain is managed at home (Shapiro et al., 1995), underscoring the importance of ensuring that patients and their families have the skills necessary for adequate assessment and management of pain. Pharmacological approaches to pain management in children with SCD are well documented (see Ballas, 2005) but not applied consistently in practice. There are few well-controlled studies, however, examining nonpharmacological approaches to pain management. Pain assessment, using daily pain diaries to differentiate chronic from acute pain and to determine pain intensity, is the launching point for pain management. Cognitive behavioral approaches (e.g., pain coping strategies, relaxation, guided imagery, positive coping self-statements) have the most empirical support in the management of disease-related pain in general and sickle cell pain specifically (Chen, Cole, & Kato, 2004), but inclusion of family and cultural tailoring to increase effectiveness is noted (Chen et al., 2004; Kaslow et al., 2000; Schwartz, Radcliffe, & Barakat, 2007). In a study conducted by Dinges and colleagues (1997), standard treatment for SCD-related pain was compared with standard treatment plus self-hypnosis training. Children, adolescents, and adults with SCD participated in a group-based training in self-hypnosis over an 18-month period. Family members were invited to participate in the groups. Although no effect on absenteeism from work or school was identified, frequency of pain episodes was reduced, number of pain-free days was increased, and medication use decreased for those who had more pain-free days. Gil and colleagues (Gil et al., 2001; Gil, Williams, Thompson, & Kinney, 1991) demonstrated the role of pain coping strategies in adjustment in SCD and

Child Health Psychology

the effectiveness of a brief (two sessions with telephone follow-up) cognitive-behavioral intervention targeting pain coping (relaxation, pleasant imagery, and calming self-talk). Compared to a standard care control group, the pain coping group reported less pain and less negative thinking when they had low-intensity pain. Also, daily pain coping practice was associated with less health-care utilization and fewer absences from school. In contrast, Barakat, Schwartz, Simon, Brereton, and Radcliffe (2010) reported no advantage for a family- and home-based brief cognitive-behavioral pain intervention for adolescents with SCD compared to a disease education comparison group. Adolescents and their parents reviewed pain experiences, triggers, and communication; learned relaxation and hypnosis; and made a pain coping plan that included parent support of adolescents to engage in relaxation and hypnosis when in pain. There were small to medium effects for intervention when both groups were combined, emphasizing that multicomponent pain interventions that include cognitive-behavioral pain coping strategies, disease education and information regarding home management, and promotion of general health behaviors may be more effective. The studies reviewed here provide qualified support for the efficacy of cognitive-behavioral approaches in reducing SCD pain and improving quality of life among children and adolescents with SCD, paralleling findings for cognitive-behavioral pain interventions in other pediatric groups (Palermo, Eccleston, Lewandowski, Williams, & Morley, 2010; Walco, Sterling, Conte, & Engel, 1999). Innovative work by Lemanek, Ranalli, and Lukens (2009) suggests that alternative approaches such as massage therapy may lead to reduced pain and distress among youth with SCD. Moreover, in a pilot study, McClellan and colleagues (2008) demonstrated that use of handheld devices to collect daily pain diary data and to reinforce concepts delivered in a brief cognitive-behavioral pain management intervention was feasible, produced high adherence to pain monitoring and satisfaction with the intervention, and resulted in improved pain management. Elucidation of essential components to pain intervention for youth with SCD (Chen et al., 2004) and the value of including the family, cultural tailoring, and technology are now needed. Chronic and Recurrent Abdominal Pain Chronic and recurrent abdominal pain in youth, among the most frequently diagnosed conditions of childhood (0.3 to 19% of youth), is characterized by abdominal pain and tenderness, vomiting, diarrhea or distension/bloating, and changes in bladder or bowel function (Chitkara, Rawat,

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& Talley, 2005). Medical causes can include constipation, as well as stomach and intestinal problems (e.g., lactose intolerance) and inflammatory bowel disease (e.g., Crohn’s disease), but functional abdominal pain, or pain for which no medical cause is identified, is not uncommon (Chitkara et al., 2005). Assessment thus involves evaluation of pain through pain diaries and recurrent abdominal pain–specific measures, assessment of functional disability, and measures of child psychological functioning. Medical treatment is comprised of education and support, diet consisting of high fiber, medication to improve digestion, and followup care; however, these treatments do not fully address psychological contributions to abdominal pain and may be insufficient to reduce pain for these patients. Child and parental factors have received particular attention in the literature (Chitkara et al., 2005). Child gender (older girls), lower socioeconomic status and greater household stress, parent gastrointestinal complaints, parent solicitous response to child pain, child anxiety and depression symptoms, and other somatic complaints have been associated with chronic and recurrent abdominal pain among youth. In a prospective study of children and adolescents, Helgeland, Sandvik, Mathiesen, and Kristensen (2010) showed that maternal psychological distress and child depression predicted recurrent abdominal pain in adolescence. In additional evidence, using a water load symptom task, Walker and colleagues (2006) found that youth with and without recurrent abdominal pain whose parents were randomly assigned to attend to their discomfort had more somatization symptom complaints than youth of parents assigned to distract from the discomfort or youth of parents given no instruction. There were no differences between the distraction and no instruction groups. Youth with recurrent abdominal pain in the parent attention group endorsed significantly more symptoms than youth without recurrent abdominal pain, indicating that parent attention may play a role in the maintenance of abdominal pain. Similar to sickle cell pain, family-based cognitivebehavioral pain interventions are efficacious for children and adolescents with recurrent abdominal pain, in part because they may address the ineffective coping (avoidance and catastrophizing pain or support seeking and reduced stoicism) identified for most youth with recurrent abdominal pain (Walker, Baber, Garber & Smith, 2008). As noted, Robins and colleagues (2005) compared standard treatment to a standard treatment plus a fivesession cognitive-behavioral therapy (CBT) group and found reduced reports of abdominal pain and fewer school absences up to 1 year postintervention. CBT included

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goal setting, teaching children and adolescents cognitive behavioral pain coping strategies, and helping parents identify how to support their child’s adaptive coping. Comparing cognitive-behavioral components of treatment for recurrent abdominal pain, Weydert and colleagues (2006) randomized children and adolescents to receive progressive muscle relaxation with either breathing exercises or guided imagery. The intervention involved an initial session, audiotaped progressive muscle relaxation with breathing or guided imagery for home practice, and two follow-up sessions. Guided imagery was found to be superior to breathing exercises, with significantly decreased pain days and days with reduced activity, through a 2-month follow-up assessment; however, pain intensity did not differ between the groups. CBT interventions for chronic and recurrent abdominal pain have positive effects in terms of reduction of pain and disability, regardless of causes. For future intervention studies, it will be important to evaluate the benefit of introducing CBT interventions shortly after diagnosis to provide adaptive pain coping strategies as an adjunct to medical treatments as necessary (Weydert et al., 2006). In addition, determination of acceptability of CBT interventions in addition to standard medical care for pediatric patients, their families, and their health-care providers is needed (Robins et al., 2005). Moreover, researchers need to advocate population-based studies to more accurately assess prevalence and identify predictors of development of recurrent abdominal pain over the course of development (Chitkara et al., 2005).

INDICATED/CLINICAL INTERVENTIONS Indicated or clinical interventions have the goal of remediating effects of chronic health conditions, such as with pediatric brain tumors, or treating the chronic health condition directly to achieve better health, as in the case of pediatric obesity. Pediatric Obesity A growing public health concern is the increasing prevalence of overweight and obesity among youth in the United States and developing nations, given the significant health and psychosocial consequences for this population (Ogden et al., 2006). Current U.S. prevalence estimates suggest that about a third of children and adolescents are at risk for or overweight, and 20% meet criteria for obesity (above the 95th percentile for body-mass index) (Ogden

et al., 2006). Numerous etiological factors have been identified that can be understood within the social ecological framework: genetic predisposition, having obese parents, family habits that contribute behavioral patterns that involve high energy intake and low energy expenditure, societal factors such as high cost of fresh fruits and vegetables and the easy availability of energy-dense, lownutrition processed foods (see Hunter, Steele, & Steele, 2008, for a summary). Because genetic and societal factors cannot be modified for individual patients, the focus on intervention is the family with parents (West, Sanders, Cleghorn, & Davies, 2010). Family-based interventions are considered well established particularly for children (Hunter et al., 2008), with variation in the extent of family involvement from parent support of child behavior change to parent-only interventions. Core elements of well-established programs have shifted from a primary emphasis on child-focused dietary change interventions targeting dietary restriction and weight loss (West et al., 2010) to interventions that target environmental modification through implementation of the Traffic Light Diet (green healthy foods, yellow energy-dense foods, and red foods to be used sparingly), lifestyle change in which energy expenditure is greater than energy intake, and improved parenting around feeding and activity (praise, reinforcement and contracting, modeling, and other behavior management approaches) (Epstein, Paluch, Beecher, & Roemmich, 2008; Jelalian & Saelens, 1999). Epstein and colleagues (2008) described a randomized controlled trial of family-based behavioral weight control intervention in which the target of decreasing unhealthy foods (high energy-dense foods) was compared to the target of increasing intake of healthy foods (fruits, vegetables, and low-fat dairy products) by making them more available. The Traffic Light Diet and information regarding activity level were presented to both groups, and both child and parent had weight loss goals. Both groups showed significant reductions in BMI, percent overweight, and parent concern for child weight, parent restraint over child eating, and parent monitoring of child behavior; there were significantly greater reductions for the healthy foods group up to 24-month follow-up. Moreover, a number of U.S. and international studies have shown family-based weight management programs to be efficacious from preschool through adolescence and with varying levels of parent involvement from facilitator to exclusive agents of change (Golan, Kaufman, & Shahar, 2006; Shelton et al., 2007; Stark et al., 2011; West et al., 2010).

Child Health Psychology

Recent studies aimed to identify family factors that enhance the efficacy of these well-established approaches, such as parent adherence and parent weight loss (Hunter et al., 2008; Steele, Steele, & Hunter, 2009). Compared to objective measures, parent adherence based on selfreports of diet and activity level was associated with better child and adolescent outcomes in a standard family-based, group behavioral weight management program (Steele et al., 2009). Parental weight loss is a consistent predictor of child weight loss, and Hunter and colleagues (2008) showed it to be the single strongest predictor of child weight reduction, while controlling for other child and treatment variables, such as child age, child sex, change in health knowledge, and attendance at intervention groups. Evidence for efficacy of family-based weight management programs for adolescents is weaker, leading to efforts to improve these interventions by introducing adaptations that address teens’ strivings for autonomy and activity preferences. For example, Jelalian and colleagues (2010) tested behavioral weight management plus either supervised aerobic exercise or peer-enhanced adventure therapy; both produced reduced BMT for adolescent participants. Using an Internet-based obesity prevention program for Black girls, Thompson and colleagues (2008) found that immediate and delayed incentives for accessing the program produced similar log-on rates (70 to 79%). Additional efforts to tailor and test interventions to differing age groups (preschool through adolescence) are needed. Differentiating effective components of intervention based on baseline variables (such as gender, age, BMI, and eating habits) and understanding how changes in diet interact with changes in environment to effect healthy food choices and satiety are key steps in efforts to address the substantial increases in obesity among youth (Epstein et al., 2008). Interventions for pediatric overweight and obesity are partial solutions, and prevention programs are critical to solving this public health crisis (American Academy of Pediatrics, 2003). Pediatric Brain Tumors Pediatric brain tumors are the second-most-common malignancy among youth (American Cancer Society, 2009), with over 4,000 children diagnosed each year (CBTRUS, 2010). With 5-year survival rates for pediatric brain tumors reaching approximately 72%, the medical, psychosocial, and neurocognitive late effects of tumordirected treatments are becoming increasingly important because of their substantial impact on quality of life in this group of survivors. Compared to other childhood

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cancer survivors, pediatric brain tumor survivors have the lowest quality of life (Zeltzer et al., 2009) and often experience neurologic, endocrinologic, and neurocognitive late effects (Turner, Rey-Casserly, Liptak, & Chordas, 2009). Likely the greatest contributor to poor quality of life in pediatric brain tumor survivors, neurocognitive late effects are the result of tumor-directed treatments disrupting normal developmental processes in children’s brains (Moore, 2005). Types of treatments and the location of the tumor affect the development of neurocognitive late effects. Children treated with cranial radiation at a young age are at the greatest risk for developing significant neurocognitive late effects (Moore, 2005) and having poorer quality of life (Reimers, Mortensen, Nysom, & Schmiegelow, 2009). In addition to documented declines in global IQ (Palmer et al., 2001), pediatric brain tumor survivors demonstrate specific deficits in attention, processing speed, and verbal memory (Robinson et al., 2010). Such deficits affect survivor academic, vocational, and social and developmental outcomes (Ellenberg et al., 2009). Lower educational attainment, lower levels of income, and lower rates of marriage and full-time employment are associated with higher levels of neurocognitive dysfunction in adult survivors of pediatric brain tumors (Ellenberg et al., 2009). Furthermore, compared to various control groups (e.g., siblings, other chronic conditions), childhood brain tumor survivors demonstrate deficits in social adjustment and social competence (Schulte & Barrera, 2009) and poorer social skills (Bonner et al., 2008). Studies have linked these difficulties with social adjustment to neurocognitive late effects, specifically lower global intellectual functioning (Holmquist & Scott, 2002; Poggi et al., 2005) and nonverbal reasoning skills (Carey, Barakat, Foley, Gyato, & Phillips, 2001). Additional research is needed to further understand the associations between neurocognitive late effects, treatment- and disease-related factors (Schulte & Barrera, 2009), and social competence in this group of survivors to identify those most at risk for poor social outcomes. Despite the multitude of poor outcomes experienced by pediatric brain tumor survivors, few interventions have been developed and tested that address the specific needs of this vulnerable group. Multisite clinical trials have tested whether two different intervention modalities, a cognitive-remediation program (Butler, Copeland, et al., 2008) and stimulant medication (e.g., Conklin et al., 2010), ameliorate some of the neurocognitive late effects experienced by childhood cancer survivors. Although these studies did not focus specifically on pediatric brain tumor survivors and included other survivors likely to

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experience neurocognitive late effects (e.g., acute lymphoblastic leukemia), they offer promise in terms of future intervention efforts for pediatric brain tumor survivors. Cognitive remediation is an intervention approach that could potentially enhance neuropsychological, behavioral, and academic outcomes in pediatric brain tumor survivors (Butler, Copeland, et al., 2008). Initially adapted from the fields of adult and pediatric brain injury rehabilitation, Butler and colleagues’ (2008) cognitive remediation program (CRP) is a 20-session intervention that also includes elements from clinical child and educational psychology. The CRP emphasizes extensive repetition, the acquisition of metacognitive and academic strategies, and cognitive-behavioral techniques, such as reframing and reinforcement (Butler & Copeland, 2002; Butler, Sahler, et al., 2008). After initial pilot work (Butler & Copeland, 2002), the CRP was tested against a wait-list control group in a multisite phase 3 clinical trial with 161 survivors of childhood cancer with documented attentional disturbance. Although the treatment resulted in no significant improvements in measured neurocognitive outcomes, the intervention group did demonstrate significant improvements in academic performance and parent-rated attention (Butler, Copeland, et al., 2008). Children receiving the CRP also demonstrated significant improvements in the use of metacognitive strategies, or strategies that allow more efficient use of limited cognitive resources when faced with demands (Butler, Copeland, et al., 2008). A series of studies have examined the effectiveness of treating childhood cancer survivors who have attentional difficulties with methylphenidate (e.g., Conklin, Reddick, et al., 2010). In general, only 45% of survivors have been shown to respond to this stimulant medication (Conklin, Helton, et al., 2010). While the findings are mixed in terms of the short-term and long-term benefits on performancebased measures of attention and processing speed (Conklin et al., 2007; Conklin, Reddick, et al., 2010), survivors taking a moderate dose of methylphenidate demonstrate improvements in parent and teacher ratings of attention and social skills after 3 to 4 weeks (Mulhern et al., 2004; Netson et al., 2011) and 12 months (Conklin, Reddick, et al., 2010). One study investigating predictors of response to methylphenidate in survivors found that those survivors with more attention problems at the start of the medication trial were the most likely to show significant improvements. However, participants with a brain tumor diagnosis were 3 times more likely to experience negative side effects of the medication (Conklin et al., 2009). With promising results, two studies applied group social skills interventions to address the difficulties with social

competence experienced by pediatric brain tumor survivors. In a preliminary intervention study, a 6-week, manualized group social skills intervention demonstrated significant improvements in self-rated social competence and parent-reported general competence in a small sample (N = 13) of school-age children treated for brain tumors (Barakat et al., 2003). This intervention targeted nonverbal social skills, conversation skills, and cooperation; incorporated weekly homework; and included a companion parent component to help participants generalize the skills acquired during the intervention. Notably, better verbal and nonverbal cognitive functioning was associated with greater improvements in socials skills at the 9-month follow-up (Barakat et al., 2003). Another manualized group social skills intervention study with 32 survivors of pediatric brain tumors found significant improvements in parental reports of social skills and quality of life (Barrera & Schulte, 2009). In both studies, the interventions had excellent retention rates and were evaluated positively by the participants (Barakat et al., 2003; Barrera & Schulte, 2009). Although these studies are promising, additional studies are needed to test the benefits of these social skills intervention approaches in pediatric brain tumor survivors. In particular, studies with larger sample sizes that include control groups would advance these intervention efforts.

CONCLUSIONS In this chapter, we integrated the literature in child health psychology, developing three basic assumptions and summarizing the evidence base in child health assessment and intervention within levels of intervention: universal, selected, and indicated/clinical. As should be apparent, although a number of well-established assessment tools and interventions have been identified, systematic research to establish the psychometric properties of pediatric psychology assessments and the effectiveness of interventions for the broad range of child health issues is in its adolescence. Reflecting on the surprising lack of published intervention studies in pediatric psychology, Drotar (1997) discussed several barriers that have limited this literature. The inherent difficulties in conducting intervention trials, combined with increasing pressures for pediatric psychologists to focus on provision of direct services to patients and families, can be significant impediments. While recognizing advances in pediatric psychology assessment and family assessment in pediatric psychology in particular, Barakat and Alderfer (2011) noted the challenges of recruiting sufficiently large sample sizes with a range of

Child Health Psychology

sociocultural diversity to test general and disease-specific measures of family functioning relevant to disease management, health quality of life, and adaptation. At the same time, there are avenues by which research on child health interventions can partner with, and enhance, the overall quality of care provided to children and families (Drotar, 1997).

Emerging Areas Child health psychology is defined not only through the summary of the extant literature but also by emerging areas of clinical and research emphasis. We highlight eHealth, bioethics, and adolescent and young adult healthcare transitions as providing windows into innovation and advancements in child health psychology. eHealth Incorporation of technology in assessment and intervention, delivered through handheld devices or Internet-based, is emerging in the child health psychology literature. As noted, use of technology facilitates daily self-report data collection as documented for daily pain diaries (McClellan et al., 2008; Moon et al., 2011) and self-monitoring in a weight management program (Cushing, Jensen, & Steele, 2010). In terms of intervention, Wade, Carey, and Wolfe (2006) provided online family problem-solving therapy to 20 families of children with moderate to severe traumatic brain injury. The intervention was comprised of eight core sessions and six additional sessions involving problem solving, family communication, crisis management, and future planning. Comparing outcomes to an attention control group (provided with Internet resources), the treatment group exhibited improved problem-solving skills and less distress at follow-up. Also using online intervention methods, Hicks and colleagues (2006) documented the effectiveness in terms of pain reduction of training in pain management for children with recurrent head or abdominal pain and their caregivers. The seven modules presented were focused on education, assessment of pain, and physical and cognitive-behavioral intervention for pain. Similar findings for pain management interventions that use Internet delivery (Palermo et al., 2009) and handheld technology (McClellan et al., 2008) have been reported. Thus, these studies present strong, preliminary data showing that use of technology is acceptable and feasible, facilitating collection of data on medical complications and allowing access to intervention from any location and inclusion of multiple family members.

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Bioethics Child health psychologists have an integral role in examining ethical issues (such as genetic testing of children, improved informed consent for clinical trials enrollment, and palliative care) and establishing guidelines for informed and ethical pediatric care. With advancing technology, parents are now given the opportunity to conduct genetic testing to understand child risk for development of medical conditions. Using hypothetical vignettes, Tarini and colleagues showed that level of interest in genetic testing varies based on whether a treatment was available for the condition (Tarini, Singer, Clark, & Davis, 2009) and level of concern of parents about development of a condition in their child varies by perceived risk based on source of information (family history versus genetic testing) (Tarini, Singer, Clark, & Davis, 2008). Whether prevention strategies are available may also determine level of interest in genetic testing (Segal, Polansky, & Sankar, 2007). Importantly, parents whose children are at genetic risk report satisfaction with the genetic counseling process (Douma et al., 2009). Future studies should aim to apply findings from hypothetical vignettes to families facing genetic testing decisions, determine the most effective timing for offering genetic testing and how best to introduce genetic risk information, and evaluate meaning of genetic risk for each family and consequences of genetic testing information for child development, parenting, and family functioning (McConkie-Rosell & Spiridigliozzi, 2004). Regarding informed consent, efforts have focused on identifying barriers to communication in the context of informed consent and testing interventions to improve informed consent communications. Miller, Drotar, Burant, and Kodish (2005) found that ethnic minority status of parents and lower socioeconomic status were associated with less understanding of information provided during an informed consent conference for enrollment on a clinical trial for pediatric leukemia. Parents were more active participants in the conference when health-care providers gave more information and attempted partnership building. Yamokoski, Hazen, and Kodish (2008) trained nurse educators to prepare parents for an informed consent conference for leukemia treatment. The majority of parents endorsed the intervention as helpful in improving their understanding of the informed consent process and as improving their communication with health-care providers by asking more questions during the conference. Yet to be addressed is understanding and supporting the role of the pediatric patients themselves in this decision-making process.

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Models of family-based palliative or advanced care have been proposed and translated into clinical care (e.g., provide information and support to pediatric patients with life-threatening conditions, allow reasoned decision making around end-of-life care, remove barriers to care, increase access to resources, and improve family participation in care) (Gilmer, 2002; Knapp, Madden, Midson, Murphy, & Shenkman, 2009). From interviews, families emphasize the importance of clear communication within a trusting parent–health-care provider relationship as central to increasing their participation in decision making and care (Contro, Larson, Scofield, Sourkes, & Cohen, 2002). Yet, health-care providers endorse a number of barriers to provision of adequate palliative care: uncertain prognosis, family readiness to acknowledge the child’s prognosis, language and cultural differences, and lack of knowledge and comfort about end-of-life care (Davies et al., 2008). Only a small portion of pediatric hospitals have palliative care programs available (and those programs that exist may be underused); therefore, further delineation of barriers from patient, parent, health-care provider, and systems perspectives may improve access to these services so essential to critical care (Johnston, 2008).

TABLE 18.1 Overview of Interventions in Child Health Psychology PPPHM Level Universal Screening followed by: • Consultation to health-care provider Primary Care

• Parent education regarding typical development and parenting practices that create positive routines • Brief behavioral interventions focused on presenting problems (e.g., sleep) • Referrals to appropriate community providers Interventions to increase knowledge, improve safety of home environment, decrease risky behaviors, and increase safety behaviors: • Child interventions to increase knowledge, decrease risky behaviors, and increase safety behaviors

Unintentional Injury

• Parenting interventions to improve knowledge and supervision • Home visitation to address environmental hazards and provide education • Community-level environmental changes • Interventions are home-, school-, and community-based

Selected Multicomponent family interventions that: • Increase specific disease knowledge • Improve attitudes regarding importance of engaging in adherence behaviors

Health-Care Transitions Improved medical treatment has resulted in significant numbers of pediatric patients surviving into adulthood. With this rising population of adolescents and young adults with chronic medical conditions, the call to develop programs to support transition or engagement in appropriate health care and transfer from the pediatric to adult health-care systems is growing (American Academy of Pediatrics, 2002; Pai & Schwartz, 2011). Adding further evidence for the necessity of transition services, studies suggest that pediatric patients face transition with anxiety and without sufficient skills for the increased responsibility entailed in adult health care (Annunziato, Parkar, & Dugan, 2011; Tuchman, Slap, & Britto, 2008). Data are emerging that reveal the inadequate care that young adults receive after transfer from pediatric settings (Wiener, Kohrt, Battles, & Pao, 2011) and the health-care transition needs of adolescent and young adult patients (Telfair, Alexander, Loosier, Alleman-Velez, & Simmons, 2004). Yet, theoretical models identifying predictors of successful transition at the patient, family, provider, and health-care system levels have yet to be fully elaborated and tested (Pai & Schwartz, 2011; Wang, McGrath, & Watts, 2010), and measures of transition readiness are just emerging with preliminary support (Sawicki et al., 2011). While

Evidence-Based Interventions

Treatment Adherence

• Increase adherence skills • Problem solving to address barriers • Family intervention to enhance appropriate parent support and monitoring of adherence behaviors • Communication skills to improve patient–provider relationship Multicomponent cognitive-behavioral interventions: • Deep breathing

• Progressive muscle relaxation Disease-Related • Guided or positive imagery Pain • Self-hypnosis • Positive coping self-statements • Incorporates: family/culturally tailored/technology Indicated/Clinical Multicomponent, family-based behavioral weight management intervention: • Traffic Light Diet Obesity

• Stimulus control (healthy foods available and accessible) • Parenting skills (praise, reinforcement, and contracting, modeling) • Education regarding increased activity level • Peer-mediated intervention for adolescents

Brain Tumors

• Social skills interventions • Cognitive remediation

Child Health Psychology

anecdotal evidence and patient feedback suggest that these programs ease transition, prospective studies that evaluate the effects of these programs on medical and psychosocial outcomes are needed (Pai & Schwartz, 2011; Tuchman et al., 2008).

Future Directions Future directions for intervention research in child health psychology were delineated throughout this chapter and center on advancing theoretical models with empirical evidence, bridging assessment to intervention, and prevention research. Advancement of child health psychology continues to require delineation of targets for intervention— based on the child’s social ecology and focused on stress, coping, and family variables—using established assessment tools and prospective designs. The most efficacious treatments outlined in Table 18.1 rely on multicomponent approaches. It will, therefore, be important to understand elements of the intervention that contribute to significant change; this will allow for refinement of interventions and may facilitate translation to clinical care and acceptability to patients, families, and health-care providers. As noted in the section on pediatric obesity, prevention is a necessary public health advocacy focus for child health psychology. Attention has been paid to the prevention of distress and traumatic stress reactions in the context of pediatric procedures, treatments, and hospitalizations (Kazak et al., 2006). This approach, utilizing screening for risk and early intervention, provides a model for additional prevention efforts in child health psychology research. Child health psychology is a growing field through which psychological knowledge is applied to address the concerns of pediatric health and illness. A social ecological orientation provides a framework for integrating assessment and intervention research and clinical practice to address risks and promote resiliencies of children, families, and health-care providers as they confront challenges related to children’s health and well-being.

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CHAPTER 19

Adolescent Health SHERIDAN PHILLIPS AND SARAH EDWARDS

ADOLESCENT DEVELOPMENT AND HEALTH 437 SALIENT AREAS OF ADOLESCENT HEALTH 451 SPECIAL SERVICES FOR ADOLESCENTS 453

FUTURE DIRECTIONS SUMMARY 455 REFERENCES 455

Adolescent health is a broad, multidisciplinary field encompassing, at a minimum, clinical and developmental psychology, education, environmental design, law, nursing, nutrition, pediatrics, psychiatry, and social work. The sheer amount of information relevant to promoting adolescent health poses various challenges. Clinically, good patient care requires collaborative efforts among different disciplines, with an overlap of core knowledge that is shared, as well as appreciation for the specialized expertise of each professional. Similarly, designing training programs necessitates setting priorities for knowledge and skills for one discipline while drawing from others as well. Advancing our knowledge of adolescent development and care, and disseminating such information, ideally involves familiarity with findings and journals in many fields. One chapter cannot do justice to this broad array of areas. We focus on those unique aspects of adolescence that have particular salience for teenagers’ health and health care. Many aspects of health are therefore omitted. For example, while the treatment of psychiatric disorders is clearly important in adolescence, these mental health needs are not unique to this developmental stage. Similarly, some adolescents require treatment for cancer, heart disease, and a variety of other physical disorders, but such problems are more prevalent at other ages. This chapter reviews aspects of physical and psychosocial development specific to adolescence and their interaction with health care, including major sources of morbidity and mortality, salient areas of health care, and special services for adolescents.

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Physical Development The onset of puberty in males is typically signaled by subtle testicular changes at about 11.5 years of age, concomitant with the start of their growth spurt. The average duration of puberty is 3 years, but it can range from 2 to 5 years. The growth spurt peaks relatively late at about 14 years, when changes in the genitals and pubic hair are very evident. (For further information regarding physical development, see Carswell and Stafford, 2008.) Pubertal development begins earlier in females, with the start of their growth spurt at about 8.7 years, followed by the first sign of breast development (breast budding) 1 year later. Their growth spurt peaks at 11.6 years, well before significant changes in breast and pubic hair and before menarche at about 12.3 years. Major changes in body size and composition therefore occur much earlier in girls than boys, with girls reaching their growth peak at about the same chronological age as boys begin their adolescent growth spurt. Even among normal adolescents, the timing and duration of puberty vary tremendously and are thus poorly correlated with chronological age. This prompted the development of a rating scale for sexual maturity (Tanner, 1962), based on pubic hair and breasts for females and pubic hair and genitalia in males. For both sexes, the scale ranges from Stage 1 (completely prepubertal) to Stage 5 (adult secondary sexual characteristics). Adolescent medicine specialists have promoted the routine use of Tanner staging. Clinically, a 12-year-old girl at Stage 1

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will have very different concerns and health risks than 12-year-old girls at Stage 4 or 5. Tanner staging is also valuable for research purposes. For example, a study of panic attacks among sixth- and seventh-grade girls reported striking differences in the incidence of panic attacks as a function of sexual maturity, but no differences due to chronological age (Hayward, Killen, & Hammer, 1992). Traditionally, Tanner stage is rated by physicians and based on physical examination. Fortunately, Litt and her colleagues (Duke, Litt, & Gross, 1980) found that most teenagers can rate themselves with considerable accuracy, and this method has been employed in recent research. While accuracy appears to be more problematic with abnormal samples (e.g., adolescents with growth retardation), self-ratings seem to be acceptably reliable and valid with normal populations (see Finkelstein et al., 1999). It is impossible to overemphasize the extent of physical change that occurs during the relatively brief period of puberty. Major endocrine changes are associated with the onset of puberty, with three distinct changes in the hypothalamic pituitary unit and (typically) increased secretion of sex hormones from the adrenal gland. Other changes occur in insulin secretion, growth hormone, and somatomedins. Although it seems evident that substantial increases in hormonal levels (especially testosterone) would be related to increased sexual urges and to aggression, the effects on behavior are not yet well understood. What is clear is that teenagers experience major biochemical and skeletal changes during puberty. During childhood (age 5 to 10 years), the average child grows 5 to 6 cm per year. In contrast, during the average adolescent growth spurt (24 to 36 months), girls grow 23 to 28 cm, and boys grow 26 cm to 28 cm taller—a growth rate of 10 to 11 cm per year, twice that of childhood. For both genders, pubertal growth accounts for 20 to 25% of final adult height. Weight growth is even more dramatic, accounting for about 50% of ideal adult body weight. Other physical changes accompany rapid increase in height and weight. Adolescents grow in a concentric fashion, with their extremities (heads, hands, and feet) reaching adult size first, followed by their limbs and finally their torsos. This accounts for the gangly appearance of many teenagers, who seem to be all arms and legs. Teenagers also experience significant changes in body composition. Percentage of body fat changes from about 15% in prepubertal girls (comparable to that of prepubertal boys) to 27% by Tanner Stage 4, along with pelvic remodeling and the emergence of breasts and hips. In contrast, lean body mass increases in boys to about 90% at maturity, largely

reflecting increased muscle mass. During puberty, boys also experience a sevenfold increase in the size of the testes, epididymis, and prostate, while the phallus usually doubles in size. Given these significant changes in body size and shape, adolescent medicine clinicians joke that young teenagers are obsessed with their hair because it is the only part of their bodies that they recognize from one month to the next. Indeed, it is remarkable that adolescents are able to remain sufficiently coordinated to be able to play a variety of sports. Spermarche, the onset of seminal emission, appears to be an early pubertal event for boys (median age 13.4 years), although there is considerable variation (range 11.7 to 15.3). It precedes peak height velocity in most boys and may occur with no evidence of pubic hair development. Some sperm are usually present in the ejaculate by Tanner Stage 3, but fertility is generally not reliable until Tanner Stage 4. Menarche, the onset of a girl’s monthly period, has been studied much more extensively than spermarche, presumably because it is a discrete and salient event, unlike the subtler sexual development of boys. American girls experience menarche at about 12.3 years (with normal variation from 9 to 17 years). A secular trend has been observed over the last century, with a gradual decrease in the age of menarche both in the United States and in European countries. This decrease is hypothesized to reflect improved nutrition and appears to have leveled out with little decrease from 1960 to the present. For individual girls, the age of menarche is a function of factors such as race, socioeconomic status, heredity, nutrition, culture, and body composition. For example, menarche tends to occur at a later age in rural families, in larger families, and at higher altitudes. Also, amenorrhea (the absence or cessation of periods) is commonly found among girls who are underweight and/or have an unusually low percentage of body fat, such as athletes or ballerinas who train intensively. Considerable controversy regarding changes in the onset of puberty was prompted by a large-scale study of U.S. girls that reported a startling increase in the percentage of Black (48%) and White (15%) 8-year-old girls who demonstrated breast and/or pubic hair development (Herman-Giddens et al., 1997). Subsequent reports comparing several large studies from 1940 to 1994 were hampered by methodological problems, such as comparability of ages, representativeness of samples, and different aspects of pubertal development (onset versus speed of progression versus completion). Overall, the data only suggest an earlier age of onset for Mexican American

Adolescent Health

and Black girls, with an unchanged or less-changed age of menarche; data for boys are insufficient even to suggest any trend (Euling et al., 2007; Himes, 2006). The reason for these changes is assumed to be environmental, in the broadest sense: changes in stress, toxins, physical activity, and/or diet (including hormonal additives). Parallel changes in obesity provide the most tempting explanation, especially since even mild obesity may trigger early sexual development, but a causal relationship has not been established.

Psychosocial Development The developmental period of life that we term adolescence is somewhat elastic in its boundaries but generally includes children from 12 to 20 years of age. It is bounded by biology at one end (the onset of puberty) and by social and legal conventions at the other end (the age when one is considered an adult). For individual children, the perception that they have entered adolescence may be triggered by their own pubertal changes or by changes evident in their peers, hence the lack of a clear-cut boundary. The end point is also unclear, with American children being considered sufficiently adult to drive at age 16, vote at age 18, and drink only at age 21 (depending on the state where they live). Transition times also vary in health-care settings, with pediatric services typically including age 12 to 20 (except for college health), while psychiatric services designed for adolescents are generally unavailable after their 18th birthday. Adolescents have a number of developmental tasks to accomplish during this relatively brief period of life (see Table 19.1). They must learn to function as independent adults, separate from their families, while not severing ties to the family. They also become increasingly oriented to others outside the family as they develop significant relationships with other adults (e.g., teachers, coaches) and with peers of both sexes. The self-image is consolidated and incorporates sexual identity (e.g., What does it mean TABLE 19.1 Developmental Tasks of Adolescence Gain independence from family. Expand relationships outside home: Other adults. Same-sex peers. Opposite-sex peers. Have realistic self-image. Handle sexual drives. Concrete to abstract thought. Develop value system. Make realistic plan for social and economic stability.

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to be a woman? How am I the same as, and different from, a man?). Self-image includes body image, which many believe is crystallized during adolescence. A host of new sensations and feelings emerge, and adolescents must come to terms with their sex drives and determine how to manage them. The transition from concrete operations to formal operations not only paves the way for learning higher-order mathematics and other abstract concepts but also provides adolescents with new tools and interests as they increasingly contemplate their own lives and the human condition. Finally, adolescents need to develop a plan for their future, establishing a direction, goals, and appropriate training for a career. This is a daunting list of tasks to accomplish in 8 years, reinforcing the traditional psychoanalytic view of adolescence as a tumultuous, troubled time of life. Yet, more recent data (Offer & Schonert-Reichl, 1992) report that about 80% of teenagers experience adolescence as a positive and pleasant period of life. How do adolescents manage this, with so many developmental tasks to accomplish? One reason is that many of these tasks are not begun de novo in adolescence. For example, children have been gaining increased independence throughout childhood as they learn to feed and dress themselves, choose preferred activities, stay overnight at a friend’s house, and go away to camp. In a study of 483 children and adolescents, Larson and Richards (1991) reported that the amount of time children spend with their families decreases from about 50% at grade 5 to about 25% at grade 9. While this is a considerable decrease, it is not an all-to-none change. Similarly, many aspects of self-image have been developed by the end of childhood, and preadolescents can identify their assets and weaknesses. The task in adolescence is to refine this self-image and incorporate sexual identity. Finally, development continues past the age of 20, as the completion of adolescent tasks continues in young adulthood. Another reason adolescents manage their developmental tasks with relative ease is that they focus on different issues at different times, reducing the number that they must address simultaneously. As Table 19.2 shows, developmental theorists divide adolescence into different periods: preadolescence and early, middle, and late adolescence. Note that boys’ progress through these phases lags behind that of girls, just as with physical development. One major focus during early adolescence is the desire for increased independence from family, combined with a rapid rise in the importance of peers. Need for conformity with peers peaks in preadolescence and early adolescence, followed by a gradual decline through late

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TABLE 19.2 Focus of Development at Different Stages of Adolescence Age

Grade

Developmental Focus

9–11 years 10–12 years

5–7

Same-sex peers.

11–13 years 12–14 years

6–8

Independence Same-sex peers Body image Abstract thought

Middle adolescence: Females: Males:

13–16 years 14–17 years

7–10

Opposite-sex peers Sexual drives Sexual identity Morality

Late adolescence: Females: Males:

16–20 years 17–20 years

11– College

Vocational plans Intimacy

Preadolescence: Females: Males: Early adolescence: Females: Males:

adolescence. Such conformity includes dress, hairstyle, music, and language. Abrupt changes in these areas can startle parents as they see their child turn into someone they barely recognize. Yet this new orientation toward peers (versus family) does not represent a total transformation. Young teenagers certainly respond to peer influence, especially that of same-sex peers, in areas where they (probably correctly) perceive that their parents will not be knowledgeable about what constitutes cool clothing, in music, and appropriate patterns of interaction with sameand opposite-sex peers. However, they typically respond to parental influence regarding educational plans and aspirations, moral and social values, and understanding the adult world. For example, one large-scale study of two groups of boys (blue collar versus upper middle class) in Chicago revealed that each group’s values and expectations were more similar to those of their parents than they were to their peers in the other socioeconomic group (Youniss & Smollar, 1989). Another major focus during early adolescence is body image, hardly surprising given the massive physical changes that occur during this time. Young teenagers evidence intense interest in and often dissatisfaction with specific parts of their bodies. A classic study (Douvan & Adelson, 1966) asked seventh graders what one aspect of themselves or their lives they would change if they could, and 59% selected a specific body part. This suggests that disease, illness, trauma, or even deviations in normal development that have obvious physical consequences will pose even more psychological challenges for young adolescents than for older teenagers. Another implication is that it is particularly important for young adolescents to

receive detailed feedback during routine physical examinations, reassuring them that their physical development is proceeding normally and encouraging them to express concerns and questions that almost certainly are present but that they often are too embarrassed to raise spontaneously. The developmental focus shifts in mid-adolescence because most teenagers begin to date between the ages of 13 and 15, with the onset of dating being influenced by gender and social status. With increasing interaction with the opposite sex, teenagers concentrate on sexual identity, dating behavior, communication skills, and rules for interaction with peers of both sexes. These early relationships are often brief and shallow, with physical appearance and skills playing a major role in choice of partner. The transition to abstract thought, which has typically occurred during early adolescence, paves the way for new cognitive activity in mid-adolescence. It is generally during this time that adolescents display increased interest in abstract concepts and even thinking per se; one teenager informed the senior author: “I’m thinking about the fact that I’m thinking about the fact that I’m thinking.” Morality, justice, and fairness become a focus, both regarding teenagers themselves (and those who inhabit their world) and society in general. Teenagers in mid-adolescence thus often devote time and thought to rules and laws (school and national), social structure, and systems of government. Developmental theorists have not traditionally focused on cognitive changes after the transition from concrete to formal operations by mid-adolescence. In the past decade, however, exciting new research indicates that brain development continues in adolescence and young adulthood, with significant implications for a wide range of characteristically adolescent behaviors ranging from risk taking (see Casey & Jones, 2010) to the ability to make good decisions (e.g., consenting to abortions, engaging in criminal activity; see Steinberg, Cauffman, Woolard, Graham, & Banich, 2009). Casey and Jones (2010) suggest that impulsive and risky behavior is a product of two developmental processes: (1) increased sensitivity to reward sensation (exaggerated central striatal response) and (2) incomplete development of the prefrontal cortex, with the ability to control and inhibit behavior increasing throughout adolescence and young adulthood. To address the first major task of late adolescence, teenagers begin to focus seriously on career plans, which often are unstable until the age of 16. By 17, most adolescents have at least established an initial direction for their future career and made plans to implement appropriate education and training to achieve these goals. However,

Adolescent Health

completing such training and alteration in career goals often continues until the mid-20s or beyond. The second major task of late adolescence is development of intimacy in personal relationships, especially with an opposite-sex partner. Older teenagers focus on different aspects of dating, moving beyond external appearance, as they develop true sharing and caring. Establishing a personal support system of friends, partner, and meaningful adults (e.g., teacher or boss) is as important as economics in allowing teenagers to function separately from their families. The developmental task of independence from family is thus frequently not fully completed until well after adolescence. Interaction of Physical and Psychosocial Development Timing of Puberty The onset of puberty occurs at a mean age of 11.2 years for girls and 11.6 years for boys, with evident physical changes at mean ages of 12.2 years and 12.9 years. Because of the tremendous variability among normally developing adolescents, however, visual evidence of puberty (Tanner Stage 3) can range from age 10.1 to 14.3 (girls) and 10.8 to 15 (boys). These age ranges are within two standard deviations from the mean and considered medically normal. Extreme delay or precocity (two standard deviations above or below the mean) requires medical evaluation to determine potential hypothalamic, pituitary, or gonadal dysfunction; undiagnosed chronic illness; or chromosomal abnormality (see “Special Conditions” in a later section). However, even teenagers who do not meet medical criteria for abnormality may appear very different from the majority of their peers: girls who still have completely prepubertal bodies at age 13 or who are fully developed before age 12 and boys who are still prepubertal at 15 or appear fully adult by age 12.5 (references are to Tanner Stage 1 versus Tanner Stage 5; see “Physical Development”). Adolescents who are in the lowest 10 to 15% and the highest 10 to 15% of this distribution are considered to be early versus late maturers, normal variations of development that most likely reflect their genetic inheritance. A series of classic studies beginning in the 1950s (see Conger & Galambos, 1997) found that early maturation provided a psychosocial advantage for boys, who more often took leadership roles and were perceived by teachers and peers as more mature and responsible than boys maturing on time. In contrast, late-maturing boys were more likely to act the class clown, were perceived as being more immature and self-conscious by teachers and peers, and were less likely to be popular or to be leaders. Adolescent

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adjustment problems are more common for late-maturing boys (see Graber, Seeley, Brooks-Gunn, & Lewinsohn, 2004), and Crockett and Petersen (1987) report a linear relationship between timing of puberty and self-esteem. These differences are hypothesized to reflect the fact that early-maturing boys are taller, heavier, and more muscular, all of which are advantageous for sports (an asset highly prized by peers at this age) and makes them closer in size to girls of the same age. Also, their more adult appearance presumably encourages adults and peers to treat them differently, giving them more responsibility and turning more to them for assistance. Analogously, late-maturing boys cannot throw their weight around, both literally and figuratively, to the same extent. In a longitudinal follow-up, which continued through age 38, men who had matured early retained their psychosocial advantage (Livson & Peskin, 1980). As adults, early-maturing males were found to be more responsible, cooperative, sociable, and self-contained (although late maturers were not totally without assets, being more insightful and creatively playful). This advantageous effect was maintained despite the fact that, on average, late-maturing boys eventually attain greater adult height than early-maturing boys because they continue to grow at a childhood rate before beginning their growth spurt; little additional growth occurs after the conclusion of the growth spurt. Greater height clearly provides a psychosocial advantage for American males, and yet the advantage of early maturation appears to outweigh the advantage of greater height in adulthood for late maturers. Maturing early is not an entirely unmixed blessing for boys. Compared with on-time maturers, some evidence more subclinical symptoms (depression, alcohol use, delinquent/externalizing behavior), which may reflect their more mature physical appearance (see Graber et al., 2004). Late maturation, however, is associated with more substantial risk. A follow-up study of early, on-time, and late maturers at age 24 reported that only the late maturers had significantly higher lifetime rates of disruptive behavior disorders and substance use (Graber et al., 2004). The evidence regarding female development is mixed, with some studies reporting that both extremes are disadvantageous, especially for early-maturing girls (Graber et al., 2004), while other studies report that mental health problems are transitory during puberty (Lien, Haavet, & Dalgard, 2010); this may reflect the difference in pubertal markers used, the first using physical changes evident to others and the second using menarche. Simmons, Blyth, and McKinney (1983) report that pubertal status appears problematic when it places a girl in a different or

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deviant position from her peers. The impact of early or late puberty may well vary as a function of a girl’s socioeconomic status and the degree of tolerance and acceptance of her appearance within her social environment. From a psychosocial standpoint, early physical maturation is generally advantageous for American boys, whereas the ideal for girls is to mature exactly at the average time and rate. However, adolescents cannot design the nature of their pubertal development, leaving late-maturing boys (especially) and early-maturing girls at potential risk for adjustment problems and difficulties with peer status and body image. In addition to appearing unusually immature, late-maturing boys have a disadvantage in addressing their developmental tasks: It is difficult to incorporate one’s new sexuality in self-image or body image until one has developed some degree of sexual maturity or to learn to handle sexual drives before they are experienced. These developmental issues are delayed and thus add to the number of tasks that must be addressed simultaneously at a later chronological age. Late maturers do not have the same option as other teenagers to focus sequentially on different developmental tasks and thus face an additional challenge. In the absence of data to guide intervention, clinical experience suggests that even brief therapy can be helpful for late-maturing boys. Goals for treatment include (a) developing skills that are valued by peers (e.g., sports that are less dependent on size, computer skills, and video games); (b) participating in organized activities (e.g., Scouts) where leadership responsibilities (based on abilities rather than appearance) are conferred by adults; and (c) enhancing social skills, especially with peers. In addition, Graber and colleagues (2004) suggest that late maturers should be connected with supportive services during the transition to adulthood, a particularly risky period for young men who are often away from home. With early-maturing girls, the plight of girls with clear outward evidence of sexual maturity at ages 6, 7, and 8 has received more attention. Endocrinologists are increasingly more reluctant to slow development with hormone therapy, as they did previously with girls under 8, leaving young girls with bodies that are considered normal medically but are obviously very different from their peers. In this case, goals for therapy include (a) parents remaining alert to potential sexual harassment and abuse; (b) promoting the choice of clothing, books, music, and activities that are appropriate for a girl’s chronological age; (c) developing skills and talents that are unrelated to physical appearance; (d) enhancing social skills with female peers; and (e) strengthening relationships with family and female friends. Graber and colleagues (2004) suggest that

impaired social skills, especially in interpersonal interactions, should be the key target for intervention. Body Image Considerable evidence indicates that American girls in general are less satisfied with their bodies than are boys (with weight satisfaction the largest gap) and that boys’ satisfaction increases with age while girls’ does not. In fact, gender differences in depression were virtually eliminated by controlling for negative body image and low self-esteem in a study of White high school students (Allgood-Merten, Lewinsohn, & Hops, 1990). In general, body image affects overall self-image and self-esteem, especially for girls. A report by the American Association of University Women (AAUW, 1992) found that confidence in “the way I look” was the most important contributor to self-worth among White schoolgirls, whereas boys more often based self-worth on their abilities. Results from a large, nationally representative sample of U.S. teenagers confirms that self-perceived weight status (not actual weight) was significantly and negatively related to mental health outcomes (Ali, Fang, & Rizzo, 2010). The relationship with depressive symptoms was most evident for girls. Self-esteem was especially correlated with body weight perceptions, suggesting this as an important mediator. Results of a multiethnic study of 877 adolescents in Los Angeles (Siegel, Yancey, Aneshengel, & Schuler, 1999) suggest that body image and the impact of pubertal timing vary considerably as a function of both gender and ethnicity. Asian American boys and girls reported similar levels of body satisfaction, whereas boys were more satisfied than girls for all other ethnic groups of teenagers. Overall, Black girls had the most positive body image and, in sharp contrast to the other ethnic groups, were not dissatisfied with their bodies if they perceived themselves as early maturers. As with Black boys, Black girls were least satisfied with their bodies if they perceived themselves as late developers. Given that boys’ body image improves with age, that Asian American girls appear less concerned about physical appearance than girls in other ethnic groups, and that Black girls have a relatively positive body image, the authors conclude that the most problematic teenagers are White and Hispanic girls, both of whom evidence dissatisfaction with their body image, which becomes increasingly negative with age. Special Conditions Gynecomastia is a benign increase in male breast tissue associated with puberty, not the fatty tissue often seen

Adolescent Health

with obese patients. It is found in about 20% of 10.5year-old boys, with a peak prevalence of 65% at age 14 (mean age of onset is 13.2). About 4% of boys have severe gynecomastia, with very evident, protruding breasts, that persists into adulthood. Gynecomastia is thought to result from an imbalance between circulating estrogens and androgens, thus representing a normal concomitant of hormonal change during puberty. The condition usually resolves in 12 to 18 months but can last for more than 2 years (see Joffe, 2008). Given that more than half of adolescent boys experience this condition, and at a developmental stage when concerns about their bodies and relationships with their peers are at a lifetime peak, it is remarkable that so little data are available regarding psychological impact and treatment. Clinical experience indicates that many young adolescent boys are seriously concerned about their breast development and its implications for their sexual development and identity, often prompting them to avoid sports or other activities that require them to remove their shirts. At a minimum, explanation and reassurance is required. Medical intervention is limited, largely due to concern about side effects, but tamoxifen (especially) and testolactone may provide relief for adolescents with significant psychological reactions to gynecomastia. Surgery is another useful option for boys with moderate to severe gynecomastia or in cases where the condition has not resolved after an extended period of time. Surgery may not be an option, however, for many boys because it is considered to be cosmetic surgery and not generally covered by health insurance. Abnormal maturational delay is defined statistically as those 5% of teenagers who fall at least two standard deviations above the mean onset of puberty. Physical examination and laboratory tests are employed to screen for a variety of disorders that may cause delay: hormonal deficiencies (including growth hormone), chromosomal abnormalities, and chronic illness (e.g., cystic fibrosis, sickle cell anemia, heart disease, or inflammatory bowel disease), which may be undiagnosed. In some cases, medical intervention can promote catch-up growth and sexual development, but the effects are irreversible in most cases. However, 90 to 95% of delayed puberty represents constitutional delay rather than an underlying disease or abnormality. Mansfield and Neinstein (2008) report (anecdotally) that it is, not surprisingly, most often male adolescents who complain about delayed puberty. Treatment with hormones often can increase growth velocity without excessive bone age advancement, but potential side effects,

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such as the possible attenuation of mature height, must be considered. It is not only psychological sequelae that are of concern. Adult men with a history of constitutionally delayed puberty have decreased radial and spinal bone mineral density, suggesting that the timing of sexual maturation may determine peak bone mineral density (Finkelstein, Neer, & Biller, 1992). Delayed menstruation (primary amenorrhea) is defined as the absence of spontaneous uterine bleeding and secondary sex characteristics by age 14 to 15, or by 16 to 16.5, regardless of the presence of secondary sex characteristics. Such delay can represent underlying disease or abnormalities or constitutional delay, but it can also result from drug use (e.g., heroin), stress, weight loss (e.g., with anorexia), or intense exercise. Serious female athletes have substantially higher rates of amenorrhea—up to 18% of recreational runners, 50% of competitive runners, and 79% of ballet dancers (note that dancers both diet and exercise strenuously). Among predisposing factors are training intensity, weight loss, changes in percentage of body fat, and younger age of onset of intense training (see Fleischman, Gordon, & Neinstein, 2008). Amenorrhea is of concern primarily because loss in bone mineral density (BMD) can begin soon after amenorrhea develops. For example, female athletes have low levels of estrogen and thus are at higher risk for osteoporosis and stress fractures. The vast majority of bone mineralization in adolescent girls is completed by age 15 to 16, and loss of bone density can have significant long-term consequences. For example, most adolescents who recover from anorexia nervosa before age 15 can have normal total body BMD, but regional BMD (lumbar spine and femoral neck) may remain low; the longer the weight loss persists, the less likely it is that BMD will return to normal (Hergenroeder, 1995). Amenorrhea is usually reversible with weight gain or, for athletes, lessening the intensity of exercise. At a minimum, amenorrheic girls should be treated with increased calcium intake and lifestyle intervention. There is substantial controversy regarding the use of hormone-replacement therapy, which is generally considered for girls who do not gain weight or reduce activity after 6 months. Who should be treated and the extent of benefit for BMD are questions that remain unresolved (Fleischman et al., 2008). The optimal intervention would be behavioral rather than medical. This physical disorder is both prompted by attitudes and behavior and treatable by changes in attitudes and behavior. However, while intervention with eating disorders has been studied extensively, there has been no systematic study of intervention with athletes, despite awareness

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that athletes are more likely to engage in various health risk behaviors than are nonathletes (Wetherill & Fromme, 2007) and that competitive female athletes are at particular risk for loss of bone density. Short stature is considered present when a child falls below the third percentile (Mansfield & Neinstein, 2008) or the fifth percentile (Delamater & Eidson, 1998) on the normal growth chart. Most instances represent normal variants, reflecting familial short stature and/or constitutional growth delay; some cases are due to underlying pathology. A variety of behavioral and psychological problems have been reported for children and adolescents with short stature (Delamater & Eidson, 1998); not surprisingly, the effects of stature are more evident in adolescence than in childhood. For example, a longitudinal study of 47 children with short stature (Holmes, Karlsson, & Thompson, 1985) reported an age-related decline in social competence that began in early adolescence; this appeared to be related to fewer friendships and social contacts. Allen, Warzak, Greger, Bernotas, and Huseman (1993) found increased behavior problems and decreased competence, compared with nonclinical norms, only for older children (age 12 and above); measures of personality, self-concept, anxiety, and social competence correlated significantly with the magnitude of the discrepancy in height, compared with normal peers. Sandberg, Brook, and Campos (1994) reported parent ratings of social competence and behavioral and emotional problems: Compared with both nonclinical norms and with girls of short stature, boys were less socially competent and evidenced more behavioral and emotional problems (particularly with regard to internalizing disorders). In the same study, boys’ self-report indicated lower social competence and decreased self-concept in athletic and job competence; this was particularly evident for older boys. A study of 311 children and adolescents with short stature resulting from four different disorders and a fifth group representing normal variation (Steinhausen, Dorr, Kannenberg, & Malin, 2000) reported that behavioral problems were a function of short stature per se, with no significant differences found for diagnostic category. Despite the clear adverse effects of short stature, endocrinologists are understandably more conservative now about using hormonal treatment to stimulate or induce pubertal development, given recent evidence regarding negative effects of hormone therapy (see Mansfield & Neinstein, 2008). In consequence, access to effective psychosocial intervention becomes even more important. Just as short stature is particularly problematic for boys, concern about excessive growth or tall stature appears to

be most evident for girls. (Tall stature is rarely treated for boys.) The differential diagnosis includes familial tall stature, excess growth hormone, anabolic steroid excess, hyperthyroidism, and various pathological syndromes. Treating girls with estrogen slows the rate of growth until skeletal growth (epiphyseal fusion) is completed and hormone supplements can be discontinued. However, girls are currently not generally treated, both because of concerns regarding the side effects of hormonal therapy (see Mansfield & Neinstein, 2008) and because tall stature (even over 6 feet) has become more socially acceptable. Unlike the psychosocial effects of short stature, however, there are no data regarding the effects of excessively tall stature. Interaction Between Developmental Issues and Health Care Rising Importance of Peers and Increased Risk Taking As children enter the developmental stage of adolescence, they become more responsive to peer attitudes and norms and also become increasingly independent, spending more time in circumstances without close parental supervision (sometimes without any adult supervision) and acquiring increased personal mobility. They also become larger and more powerful physically, more sophisticated socially, and often have more discretionary income. Changes in brain structure and hormones promote greater motivation for sensation seeking without fully developed cognitive abilities to exert good judgment (see “Psychosocial Development”). All these factors provide teenagers with increased motivation and ability to engage in behaviors that may have adverse consequences for their health. A relatively small subset of adolescents are at very high risk for significant problems. For example, some psychiatric problems meet diagnostic criteria for the first time during adolescence; difficulties in childhood may be exacerbated by puberty and/or increasing age and social demands. This problematic subgroup consists of teenagers who constitute a significant danger to themselves (e.g., long-term street youth) or others (e.g., those arrested for major crimes before the age of 15). Most teenagers, however, are distributed along a continuum of risk that ranges from higher to lower; it would be difficult to find adolescents who have not engaged in any risky behavior throughout adolescence. Some risks are so common that they virtually define adolescence. For example, it is expected that all teenagers will begin to drive, typically doing so independently by the age of 16. Yet motor vehicle deaths are the leading cause

Adolescent Health

of death among adolescents, and both deaths and crashes are 4 times more likely to occur with drivers between 16 and 19 years of age, compared with drivers 25 to 69 years old (Pakpreo, Klein, & Neinstein, 2008). Similarly, sexual activity is the norm, with 62% of teens having had sexual intercourse by the 12th grade (Eaton et al., 2010). High school students also reported that, in the previous month, 10% had driven drunk, 28% had ridden with a driver who was drunk, 42% had drunk alcohol, 21% had used marijuana, 20% had used cigarettes, and 18% had carried a weapon (Eaton et al., 2010). About 32% of students had been in physical fights in the past year. Note that these statistics do not include teenagers who have dropped out of school, whose statistics are generally higher (Comerci & Schwebel, 2000). The dropout rate is about 25% nationally but 50 to 80% in some inner cities (Scales, 1988). In summary, from a normative perspective, adolescence per se is a risky business. Increasing evidence suggests that multiple types of risktaking behavior are associated. Alcohol and other substance use are factors in violence, motor vehicle accidents, and risky sex. Some behaviors appear to occur in clusters, such as sensation seeking in sports, alcohol use, and sexual activity (Wetherill & Fromme, 2007). Most 12- to 17-yearolds do not engage in multiple forms of risk taking, but there is a dramatic increase with age. Approximately one third of 14- to 17-year-olds do so versus half of 18- to 20year-olds, with males and out-of-school teens substantially more likely to display multiple high-risk behaviors (Brener & Collins, 1998). The line of demarcation is not always clear, with a continuum of risk often existing even for the same behavior. For example, some high school students (23% of males and 15% of females) and college students (12% of males and 7% of females) report rarely or never using seat belts (see Patel, Greydanus. & Rowlett, 2000), but only 34% of teenagers report consistent use of seat belts (see Neinstein, 1996). Morbidity and Mortality Of the 10 leading causes of death among American adolescents (age 12 to 19), four are behavioral in origin: unintentional injury/accidents, homicide, suicide, and HIV. The leading cause of death in this age group is unintentional injury, primarily from motor vehicle crashes. Accidents, homicide, and suicide cause 72% of deaths of 15- to 19-year-olds. Death rates and causes vary as a function of gender and race. Overall, adolescent males have twice the death rate of adolescent females. Black teens (age 15 to 19) are more likely to die than White and Hispanic teens. Further, Black youth are most likely to die as

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a result of homicide and legal intervention, whereas accidents are the primary cause of death for all other major racial groups. The homicide rate for Black males (15 to 19) is more than twice that of Hispanic males and about 15 times that of non-Hispanic White males (for all statistics, see Minino, 2010). Even if unintentional injury does not result in death, it is a major source of morbidity (e.g., injury is the leading cause of loss of productive years of life). Adolescents have the highest injury rate of all age groups, with the highest rates for older adolescents, males, Whites, and Midwestern residents (Fraser, 1996). Automobile crashes are the leading cause of both fatal and nonfatal unintentional injuries, but significant mortality and morbidity also result from motorcycles, bicycles, skateboards, and all-terrain vehicles, as well as firearms, drowning, poisoning, sports, and home fires. The frequency and extent of accidental injury are exacerbated by alcohol and other substance use and failure to use seat belts or helmets; they are ameliorated by nighttime curfews and mandatory seat belt laws (see Eaton et al., 2010; Neinstein, 1996; Pakpreo et al., 2008; Patel et al., 2000). The New Morbidity The physical results of injury-risking behavior, illegal substance use, unprotected sex, fighting, homicide, and suicide have been termed “the new morbidity” (Haggerty, 1986). In the second half of the 20th century, these behaviorally based threats to health eclipsed the previous causes of pediatric mortality and morbidity as medical advances eradicated many childhood diseases. Unfortunately, improvements in health care have not led to better health status among American teenagers; adolescents are the only age group in the United States whose mortality rate actually increased from 1960 to 1990 (Gans, 1990). Increased recognition of the new morbidity prompted major changes in pediatrics. A national survey of pediatricians conducted by the American Academy of Pediatrics clearly indicated that they felt inadequately trained to assess and address behavioral issues. The report of this task force in 1978 spurred significant changes in pediatric education and the development of a new specialty, behavioral pediatrics (American Academy of Pediatrics, 1978). As part of this same national change, adolescent medicine began a transformation from a traditional, biologically focused practice of medical care for adolescents to a multidisciplinary approach to promoting adolescent health (Phillips, Moscicki, Kaufman, & Moore, 1998). Funding from private foundations and the Department of Health, Education, and

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Welfare provided the financial support to recruit additional pediatric faculty members from the field of psychology, as well as to provide faculty positions for nurses, nutritionists, and social workers. The influx of these professionals, while not an enormous number, significantly changed training in adolescent medicine and, especially, contributed disproportionately to knowledge and dissemination of information about adolescent health (Cromer & Stager, 2000; Phillips et al., 1998). The Adolescent as a Patient The adolescent is in transition, having left the world of childhood but not yet having achieved adult status, either developmentally or legally. This fact has numerous implications for the structure of health care for teenagers. One of the earliest issues addressed by adolescent medicine practitioners was the advisability of establishing an inpatient ward specifically designed for teenagers rather than housing adolescents on children’s or adult wards (McAnarney, 1992). Similarly, primary care practitioners were advised to avoid decorating their waiting rooms and offices with bunny pictures and to include reading material appropriate for teenagers, possibly also setting different times for office visits by children versus adolescents. Thornier practice issues include how and when to see the teenager alone and with parent(s), confidentiality and its limitations, and fees. The issue of billing illustrates problems engendered by the adolescent’s in-between status. If parents are paying the bills, to what extent is it possible to maintain confidentiality regarding diagnosis or the content and purpose of care? Is the provider’s primary responsibility to the teenager or to the parents? For what conditions is the teenager considered to be an emancipated minor, legally entitling him or her to seek care without parental knowledge or consent? If the family is not involved, how can the adolescent pay for professional fees and medication? The issue of payment is particularly problematic for teenagers because they almost always require more professional time than children, whose parents typically assume responsibility for reporting symptoms, understanding treatment recommendations, and managing care, or adults, who have generally learned how to be patients. For example, consider the financial implications of the average Medicaid reimbursement rate for the following services: $37 for a 30-minute counseling visit, $47 for a preventive visit, and $18 for hepatitis B immunization (English, Kaplan, & Morreale, 2010). Given these difficulties, it is hardly surprising that adolescent services often struggle financially

and that funding is a significant barrier to good adolescent health care. The Health-Care Provider The onset of adolescence signals the beginning of a new relationship between the patient and health-care provider, with a host of new issues that ideally should be assessed and addressed. The American Medical Association (AMA) published guidelines in 1994 for health screening in adolescence (guidelines for adolescent preventive services, or GAPS). The GAPS recommendations suggest annual preventive visits with additional counseling for parents twice during adolescence and comprehensive physical examinations at least three times between the ages of 11 and 21. For the general population, screening is recommended to include height, weight, blood pressure, and problem drinking and, for females, a Pap test, chlamydia screen, and rubella serology. Routine intervention includes immunizations, chemoprophylaxis (multivitamin with folic acid for females), and counseling regarding injury prevention, substance use, sexual behavior, diet and exercise, and dental health. Additional interventions are suggested for a variety of high-risk populations. Given the content of much of the GAPS, it is obvious that the care provider must be able to establish a trusting and credible relationship with the teenager if assessment and counseling are to be at all effective. Adolescent providers thus have to not only learn the nature of health risks and potential risk-reduction strategies but also acquire skills in interviewing, establishing rapport, and recommending behavioral changes. Textbooks in adolescent medicine, therefore, include a long list of tips for interacting with teenagers and specific techniques to enhance the accuracy of information they receive about illicit or illegal behavior (for example, see Neinstein, Gordon, Katzman, Rosen, & Woods, 2008). Physicians do have some inherent advantages in this process. They have literally seen the teenager naked and can begin to establish their credibility and usefulness by reassuring teenagers that their physical development is progressing normally (or explain normal variations) and probe for common concerns in this area. Skilled physicians can build on the unique nature of their relationship with a teenager in a way that most mental health providers cannot. It is especially important that all clinicians who treat adolescents develop knowledge and skills regarding behavior and development because the majority of American teenagers receive only screening and counseling, if at all, from a primary care provider rather than from a mental

Adolescent Health

health professional (Kim, 2003). The ability to detect, address, and potentially refer behavioral problems is thus a key component of primary care. Yet, there are consistent reports that pediatricians fail to detect psychopathology, identifying at most half of their patients with mental health needs (e.g., Costello et al., 1988). Unfortunately, current training for primary care providers still falls short in adolescent health care (Rosen & Neinstein, 2008). Compliance With Medical Regimens Adolescence can signal a new era of noncompliance, even with health routines that have been well established in childhood. While noncompliance is certainly a problem for all age groups and for a variety of acute and chronic conditions, it has been of particular concern in chronic diseases such as diabetes, asthma, and juvenile rheumatoid arthritis because of the potential for significant and irreversible consequences. As a corollary, evidence regarding diabetes suggests that intensive management yields even better short-term effects and reduces long-term complications beyond those considered to be the norm with conventional diabetes management (see Ruggiero & Javorsky, 1999). Considerable evidence suggests that adolescence is associated with poorer compliance than childhood (Manne, 1998). For example, compared with children, diabetics age 16 to 19 administer their injections less regularly, exercise less frequently, eat too few carbohydrates and too many fats, eat less frequently, and test their glucose levels less often (Delameter et al., 1989; Johnson, Freund, Silverstein, Hansen, & Malone, 1990). The average age when children first show a pattern of serious and persistent noncompliance with diabetes management is 14.8 years (Kovacs, Goldston, Obrosky, & Iyengar, 1992). Noncompliance is such a common problem with adolescents that it has been suggested that adolescence per se is a contraindication for receipt of organ transplantation (see discussion in Stuber & Canning, 1998). Age differences in compliance vary as a function of the treatment regimen under study (e.g., very young children experience more problems with oral medications; Phipps & DeCuir-Whalley, 1990). Adolescent noncompliance appears most likely when the regimen is related to independence (either rebelling against parental nagging or reflecting reduced parental supervision), undesirable side effects (e.g., cosmetic side effects of steroids), or the need for peer conformity. Some of these challenges are most evident with diabetes because adherence requires eating foods different from what their peers eat and at different times from their peers, refraining from drinking alcohol,

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and giving oneself injections (which can be readily misinterpreted by both peers and adults as significant drug abuse). It is no wonder, then, that some teenagers try to hide their disease status (Johnson, Silverstein, Rosenbloom, Carter, & Cunningham, 1986) and that denial often becomes a problem in adolescence (Rhee, Belyea, Cirzynski, & Brasch, 2009). Finally, pubertal changes per se may exacerbate problems with metabolic control during adolescence (see Ruggiero & Javorsky, 1999), further complicating good management. Relatively little systematic intervention has specifically targeted adolescent noncompliance with disease management. Three studies of social skill training (with peers and/or parents) reported mixed, albeit promising, results with diabetic adolescents, as did one study of family interventions, a study of anxiety management training, and a single-case study of biofeedback training (see Manne, 1998). Positive effects have also been reported for copingskills training for diabetic teenagers (Grey, Boland & Davidson, 2000) and a school-based intervention for asthmatic adolescents (Bruzzese, Unikel, Gallagher, Evans, & Colland, 2008). Most other chronic-disease interventions have focused on children or a mixed group of adolescents and children. There have also been many and varied interventions with adolescents that have targeted noncompliance with regimens such as dental care and treatment of addictions and eating disorders, with appointment keeping, and with prevention efforts focused on smoking, drug and alcohol use, exercise, nutrition, and sexually transmitted disease. A comprehensive review of noncompliance and adherence is beyond the scope of this chapter. Much of the research on noncompliance has focused on patient characteristics such as gender, age, socioeconomic status, family characteristics, knowledge, skills, attitudes, health beliefs, and health status. However, the demands of the treatment regimen, the structure of health care, and the nature of the patient–provider relationship are also key factors in promoting compliance (see Manne, 1998; Phillips, 1997b; Rhee et al., 2009, Ruggiero & Javorsky, 1999). While not yet demonstrated empirically, it would be reasonable to expect interaction effects among these variables, with specific aspects of the regimen, delivery system, and patient–provider relationship exerting greater influence on compliance among teenagers than for patients in other age groups. Vulnerability to Abuse Maltreatment of children and adolescents includes neglect as well as physical, emotional, and sexual abuse. Overall rates of maltreatment are lower in adolescence than in

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childhood; adolescents represent 24% of all reported cases (U.S. Department of Health & Human Services [USDHHS], 2010). However, differences between age groups vary as a function of the type of abuse and appear related to adolescents’ increasing independence and physical power, increasing contact with persons beyond their immediate families, and sexual development. Compared with children, adolescents are less likely to experience physical abuse relative to sexual abuse (USDHHS, 2010), although the picture is complicated by the unreliability of estimates regarding how much abuse has been ongoing versus that with onset in adolescence. Gender differences are difficult to summarize because overall maltreatment rates for females increase in adolescence, with twice as many females maltreated as males, whereas male teenagers are more likely than female teenagers to be the victims of physical abuse and homicide. The psychosocial sequelae of maltreatment in adolescence are similar to those of childhood maltreatment, although it has been suggested that the processes involved may be different (Garbarino, Schellenbach, & Sebes, 1986). Compared with community controls, abused teenagers displayed significantly higher rates of diagnosed psychopathology, even after controlling for parental psychopathology, family structure, and gender; this included major depression, dysthymia, conduct disorder, drug use and abuse, and cigarette use. A separate study using the Child Behavior Checklist and Youth Self-Report Form reported significantly more behavior problems (especially externalizing problems) among maltreated teenagers than among teenagers who were not maltreated (see Garbarino et al., 1986). Beyond its impact on mental health, maltreatment may have long-term consequences for physical health. Adverse experiences such as maltreatment or living with domestic violence or dysfunctional adults are strongly interrelated, and multiple categories of exposure during childhood or adolescence are associated with later health risk factors (Felliti et al., 1998). Adults who experienced four or more categories showed major increases in substance abuse, depression, suicide attempts, smoking, more than 50 sexual partners, sexually transmitted disease, physical inactivity, and severe obesity. Further, there was a linear relationship between adverse exposures and adult diseases such as heart disease, cancer, chronic lung disease, skeletal fractures, and liver disease. The clearest instance of increased vulnerability for adolescents is seen with sexual abuse, particularly rape. (The following discussion refers to forcible rape without consent, not statutory rape.) Adolescents are twice as likely

as adults to be victims of rape (Finkelhor & DziubaLeatherman, 1994), with half of all rape victims in the United States being under the age of 18. The peak age for victimization is 16 to 19 (Neinstein, Juliani, Shapiro, & Warf, 1996). These statistics presumably reflect the fact that teenagers are both physically attractive and more vulnerable to deception and coercion than adults. The rapist also tends to be young, with the peak age being 16 to 20 and 66% of all rapists being between the ages of 16 and 24 (Neinstein et al., 1996). Compared with rape victims over the age of 20, adolescent victims have been assaulted more often by an acquaintance or friend (71%); this percentage is higher than for any other age group (USDHHS, 2002). (Parents were perpetrators for 5% of the cases, other relatives for 13%, and strangers for 11%.) In 66% of cases, police were not informed of the assault; if they were informed, witnesses or suspects were questioned only in 35% of cases (USDHHS, 2002). Although approximately 90% of victims of reported rapes are female, male teenagers also are victims of rape, and male rape may be even more underreported than female rape (Finkelhor & Dziuba-Leatherman, 1994). A rare study of 122 adolescent rape victims (Mann, 1981) judged the impact of the rape to be severe more often for parents (80%) than for the teenagers themselves (37%). Rather disturbingly, 80% of the teenagers reported having problems with their parents after the rape, and only 20% described their parents as supportive and understanding. More parents (67%) expressed anger at the assailant than did the teenagers (45%), and 41% of parents expressed anger at the victim. While teenagers were most often concerned about their safety and feelings of guilt and shame, parents were most often concerned about retaliation and especially the sexual sequelae; parental concern included immediate effects, such as fear of pregnancy (79%), physical damage such as infertility (67%), and fear of sexually transmitted disease (52%), and long-term effects, such as increased risk of future sexual activity (66%). This last fear is not unfounded because there is a definite relationship between the onset of sexual activity at a younger age and a history of rape as the first sexual act; girls who begin their sexual lives at ages 13 and 14 are 4 to 5 times more likely to have had sex forced on them initially than are girls whose sexual activity began at age 16 or 17 (see Cox, 2008). Health Care and Physical Appearance Given the preoccupation with physical appearance and increased orientation to peers that emerge during adolescence, it would be logical to expect that any aspect

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of health care that relates to physical appearance would have even greater salience for teenagers than for children or adults. For example, it is no surprise that anorexia and bulimia almost always have their onset during adolescence. Yet, remarkably little research has focused on this aspect of health care. There are data indicating that childhood obesity has psychosocial consequences: rejection by peers, psychological distress, dissatisfaction with one’s body, and low self-esteem (see Anderson, Cohen, Naumova, Jacques, & Must, 2007). Because the incidence of obesity increases during adolescence, the psychosocial effects affect more teenagers numerically and may even have more pronounced psychological impact. A prospective study of teenagers found that obesity predicted an increased risk for subsequent major depressive disorder and for anxiety disorders for girls; male adolescent obesity was not significantly associated with later risk (Anderson et al., 2007). Disfigurement due to physical injury would be expected to have an impact on psychosocial development. The effects of nonfatal accidents and exposure to violence include closed-head injury, facial disfiguration, limb amputation, spinal cord injuries, and genital injuries. Not only are these more common in adolescence but also they tend to be the most severe injuries (Stoddard & Saxe, 2001). More information is available regarding burns than any other type of injury. Disfiguring burns are reported to affect children’s body image, self-esteem, and social interactions, with some studies indicating that adjustment is more difficult for adolescents (see Arcenaux & Meyer, 2009). The extensive and repeated pain experienced by burn victims is hypothesized to be related to long-term psychiatric illness, but findings are mixed. Certainly, the disfiguring aspects of burns suggest that their psychosocial impact would be a particularly important area of research, yet a review by Tarnowski and Brown (2003) suggests that the topic of psychological aspects even of pediatric burns has been relatively neglected. However, most burn victims appear to adapt relatively well eventually and do not experience significant long-term pathology, although the factors that contribute to resilience have not been well researched. A less serious, yet more common, example is acne. Acne is the most common skin disease, and possibly the most common health concern, experienced by teenagers; 80 to 95% of adolescents have some degree of acne (Pang & Eichenfield, 2008). Measures of chronic stress, based on adolescents’ reports of daily hassles, include items on

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skin problems as well as being overweight (see Repetti, McGrath, & Ishikawa, 1999). Prevalence and severity of acne increases with pubertal development and peaks between ages 14 to 17 years in girls and 16 to 19 years in boys; acne varies from a short, mild course to a severe disease lasting 10 to 15 years (Pang & Eichenfield, 2008). Virtually all acne is treatable, albeit not eradicable, given the advent of new medications and surgical options (see Pang & Eichenfield, 2008). Clinical experience indicates that acne is of some concern to most teenagers and a significant obstacle to peer interaction (especially with opposite-sex peers) for some, yet little information is available regarding its psychosocial impact. Some studies suggest that anxiety and depression increase in teenagers with chronic acne and impair social functioning, but little well-controlled research is available (see Hull & D’Arcy, 2005). The psychological impact of physical conditions appears to be most relevant when such information might guide decisions about treatment and insurance coverage. For example, when does acne cease being just a common hassle and become a significant obstacle to social development? Similarly, under what circumstances is plastic surgery indicated, and when should families with limited financial resources receive assistance in obtaining surgery, which is typically considered purely cosmetic? Currently, such decisions represent a judgment call by clinicians and especially by families. Cost may be a significant deterrent because health insurance rarely covers cosmetic procedures. Data regarding the social and psychological benefits of cosmetic treatment would be very useful in making decisions about adolescents’ health care. Even if costly treatment was not feasible, research could suggest strategies to assist teenagers in overcoming the social effects of acne or other conditions related to physical appearance. Effects of Illness on Development Large-scale studies of children with chronic illness and physical handicaps indicate that they are twice as likely to evidence behavioral and emotional disorders as their nondisabled peers, with internalizing disorders more prevalent than externalizing disorders; sensory conditions (e.g., deafness) and neurological conditions (e.g., seizure disorders) increase risk more than other chronic illnesses (e.g., cancer or cystic fibrosis; see Quittner & DiGirolamo, 1998). Some difficulties are the direct result of the disabling condition, such as associated neurological problems and hyposexuality in epilepsy. Most problems, however, represent the indirect effect of disease on development

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because of its impact on parental and peer attitudes. Parental worry can lead to altered expectations and excessive restrictions on the child’s activities and lifestyle, with family reactions ranging from overprotection to rejection, resulting in a variety of developmental problems such as low self-esteem, lack of social skills, guilt, or adopting a sick role (see Aldenkamp & Mulder, 1999). Such effects are also found with adolescents, whose functioning is negatively affected by having a disability, although family connectedness has been identified as having an even greater effect on emotional well-being (see Coupey, 2008). Specific effects on development also reflect the type of disorder, including chronicity, course, visibility, side effects of medication, amount of disruption of control, and prognosis. A highly visible disease with significant cosmetic effects, such as psoriasis, may cause more emotional distress and peer rejection than an illness such as Hodgkin’s disease. Disorders or trauma that affect mobility and independence (e.g., amputation or seizure disorders) can have particular impact on adolescents’ need for self-mastery, with resulting risks for psychological and social development (Coupey, 2008). Coupey (2008) has also suggested that the timing of the onset of the disease or impairment affects the nature of the psychosocial impact. Chronic illness that is first diagnosed in early adolescence may have the most impact on subsequent body image (and, indeed, teenagers with chronic illness seem to be at special risk for eating disorders). Coupey suggests that the greatest psychosocial impact occurs if onset is in mid-adolescence, when teenagers are focused on dating and sexual development, resulting in noncompliance, depression, and risk taking with sexual activity and substance use. Onset in late adolescence usually is more benign, with greatest relevance for educational and vocational plans (see Coupey, 2008). Health Promotion Because so much of morbidity and mortality in adolescence is preventable, promoting health via prevention has become an increasingly important focus, especially in the past decade. Anticipatory guidance for teenagers and parents is a prominent component of the AMA’s GAPS recommendations for primary care. Specific interventions have included public service spots on television, largely addressing substance use and staying in school, and a host of special school and/or community programs designed to reduce the risk of pregnancy, violence, and substance abuse. Considerable success is evident in some areas. For example, burn injuries have decreased by 50% due to

legislation, education, and devices such as smoke alarms and sprinkler systems (see Stoddard & Saxe, 2001). Current prevention efforts often employ a dual strategy, attempting to reduce risk factors and also enhance protective factors. The concept of resilience has provided a framework for understanding how children can thrive, even in adverse circumstances. Considerable evidence has identified consistent protective factors that cut across racial, gender, and economic groups. One key characteristic of resilient young people is having a close relationship with at least one caring, competent, reliable adult who promotes prosocial behavior; optimally, this sense of connectedness to adults is enhanced by opportunities to develop social skills and other skills, which engender self-confidence and selfesteem (see Olsson, Bond, & Burns, 2003). Attempts to promote such adult relationships have focused on strengthening family functioning and communication, as well as on the development of extrafamilial relationships through adult mentoring programs, community service, and school connectedness (Resnick, Ireland, & Borowsky, 2004). Another important aspect of health promotion is advocacy, both for individuals and at the state and national levels. Advocacy efforts range from increased funding for health care (English, 2008; Palfrey, 2009) to legal intervention. Advocacy for laws requiring infant car seats and bicycle helmets have reduced childhood injuries. Analogously, efforts to reduce the toll of automobile accidents on adolescents have assessed the effectiveness of current strategies and explored promising new ones. Research indicates that traditional driver education has not been effective, whereas a graduated driver licensing system and nighttime curfews have decreased accidents, injuries, and fatalities for teenage drivers. The most successful measures to date have been mandatory seat belt use, minimum drinking age laws, and drunk driving laws, while other promising interventions—ignition interlock devices, administrative alcohol laws, random screening programs, and education regarding vehicle crash-worthiness—are under study (see Pakpreo et al., 2008). Over the past 30 years, the Healthy People program has set national health priorities by establishing goals in the most critical areas in need of improvement (see Park, Brindis, Chang, & Irwin, 2008). Park and colleagues (2008) reviewed the current status of objectives for adolescents and young adults. They report most areas show minor change (either improvement or deterioration) but highlight some notable successes. The mortality rate for ages 10 to 14 has decreased (though 15 to 19 and 20 to 24 are largely unchanged). Two important behaviors among high school

Adolescent Health

students have improved (riding with a drunk driver and seat belt use), although motor vehicle mortality has not. The teen pregnancy rate and some related sexual behavior have decreased, as has tobacco use. These successes reflect a combination of prevention efforts, including media spots, prevention programs, and changes in policies and laws (see Park et al., 2008).

SALIENT AREAS OF ADOLESCENT HEALTH Health care for teenagers and prevention efforts have focused on the major contributors to morbidity and mortality (trauma, substance misuse, and risky sex), as well as on problems that typically emerge during adolescence (anorexia and bulimia). Such efforts have resulted in more widespread development of shock trauma centers to reduce the impact of severe trauma and the burgeoning field of sports medicine. For example, there is now considerable evidence that athletes engage in more health-risk behaviors than nonathletes (e.g., less seat belt and helmet use, more alcohol and physical fights) and a subset of thrill seekers are at very high risk for trauma. More recently, there has been increased attention to the other major contributor to trauma—violence (see Pratt & Greydanus, 2000). Finally, substance use and misuse are of concern per se but also as contributors to other risky behaviors. Many threats to adolescent health are thus interrelated, and increasing evidence suggests that multiple types of risk-taking behaviors co-occur in clusters (e.g., Brener & Collins, 1998; Wetherill & Fromme, 2007). A comprehensive review of these salient areas of adolescent health is beyond the scope of this chapter (see DiClemente, Hanson, & Ponton, 1996). However, a brief review of risky sexual behavior is presented in the following section. Sexual Activity and Health Consequences Sexual activity trends among American teenagers have changed dramatically over the past 40 years. The rates of sexual activity increased during the 1970s and 1980s, stabilized in the 1990s, and declined in the past decade. The initial rise was largely attributed to initiation of sexual activity at a younger age rather than an increase in promiscuity (Phillips, 1997a). The recent decrease appears to reflect some combination of intervention to postpone sexual activity and the impact of the AIDS epidemic (Cox, 2008). Best estimates of current sexual activity include both students and teens who are not in school (Mosher, Chandra, & Jones, 2005): Of never-married 19-year-olds, 77%

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of females and 69% of males reported having had sexual intercourse. Approximately a quarter of each group had initiated intercourse by age 15. Many teens also engage in related sexual activity: Those age 15 to 19 are slightly more likely to have oral sex than vaginal intercourse; heterosexual anal intercourse was reported by 11%; and samesex contact by 5% of males and 11% of females (Mosher et al., 2005). While avoiding the risk of pregnancy, such extraintercourse sexual activity still presents the risk of sexually transmitted disease. Sexually Transmitted Disease Teenagers’ becoming sexually active at younger ages prompts concern regarding sexually transmitted disease (STD), not only because there is a longer time for potential exposure but also because of the cumulative effect on number of sexual partners. Also, teenagers may be more vulnerable to infection if they are exposed, both because they are less likely to use protection consistently and because their immune and reproductive systems are less well developed than those of adults (Fortenberry & Neinstein, 2008). Significant sequelae of STDs include pelvic inflammatory disease, lowered fertility, sterility, congenital syphilis, and life-threatening disorders such as ectopic pregnancy, pelvic abscesses, cancer, and death from AIDS (see Fortenberry & Neinstein, 2008). STDs are difficult to control because of their exponential spread and because those who are infected (especially women) are often asymptomatic and hence can unwittingly transmit the infection. This results in prevalence rates among young people that are considered to be of epidemic proportions. Approximately a third of all sexually active youth become infected with an STD by age 24, and the Centers for Disease Control and Prevention (CDC) estimates that young adults age 15 to 24 acquire 50% of all new STDs, even though they represent only 25% of the sexually experienced population (Kirby, 2007). Accurate prevalence rates are difficult to obtain because only gonorrhea, syphilis, and AIDS are required to be reported to the CDC, and many cases are not reported despite the requirement. Because of its prevalence and the reporting requirement, gonorrhea is often used as a marker of STD patterns in general, although other STDs are more common (e.g., chlamydia is 4 times as prevalent) and include currently incurable diseases such as genital herpes and genital warts. Reported rates of gonorrhea are now at the lowest level since the CDC started tracking the disease in 1941, with rates declining 17% since 2006. Despite this dramatic decline, young people age 15 to 24 have 4 times

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the reported gonorrhea rate of the total population, and women age 15 to 19 have the highest rate of gonorrhea of any age or sex group (CDC, 2010c). While gonorrhea is declining for all races and ethnicities, there has been a smaller decrease for Blacks (15%) than for Hispanics (21%) or Whites (25%) since 2006. Black females and males age 15 to 19 continue to have the highest gonorrhea rates, followed by black women age 20 to 24, and Hispanic women age 20 to 24 (CDC, 2010c). The racial difference among teenagers probably reflects various factors, including (a) greater success with prevention messages in White communities, (b) public STD clinics being overwhelmed and underfunded, (c) publicly funded control efforts shifting from gonorrhea to chlamydia and syphilis, and (d) STD risk behaviors being fueled by illicit drugs (see Cates & Berman, 1999). These factors probably also affect patterns of HIV transmission in the United States, where it is a disease of the young and the non-White. While only an estimated 545 of all diagnosed AIDS cases in 2008 represent teenagers age 13 to 19, there were 5,592 cases of young adults aged 20 to 29. With a mean incubation period of 7 to 10 years from HIV infection to AIDS, it is obvious that most of the young adults with AIDS acquired the disease as teenagers (CDC, 2010d). Black adolescents had the highest rates of HIV infection (64% versus 17% White and 17% Hispanic); 17% of adolescents age 13 to 19 were Black, yet an estimated 75% of diagnoses of HIV infection in 13to 19-year-olds were in Black adolescents (CDC, 2010d). Finally, although most HIV cases are still occurring in the male population, females accounted for an estimated 29% of adolescents age 13 to 19 diagnosed with HIV infection, compared with 20% of young adults age 20 to 24. STD prevention efforts that have emphasized abstinence have met with only limited success (American Social Health Association [ASHA], 2005). The general increase in public awareness, as well as the influence of prevention programs, has had a positive effect on condom use, with the percentage of adolescents using a condom during last intercourse increasing from 1991 to 2003 (46.2% to 63%) but stabilizing from 2003 to 2009 (63% to 61.1%) (CDC, 2010a). Specific interventions tailored to promote safe sexual practices suggest that it may be easier to reduce some risky behaviors than others. For example, Tortolero and colleagues (2010) tested the effects of an STD and pregnancy prevention program: The prevention intervention group showed delays in overall sexual behavior, but no intervention effects were observed for the number of times that students had sex under the influence of alcohol, used condoms, or had multiple partners.

An entirely different strategy is prevention via vaccination, currently being employed for hepatitis B and human papillomavirus (HPV). The hepatitis B vaccine is now given to newborns and is mandated by many states for school and college entry. The rates of hepatitis B have dropped by 80% in youth age 15 to 24 and by 94% in youth under 15 from 1990 to 2004 (ASHA, 2005). The quadrivalent HPV vaccine was licensed in 2006 for females age 9 to 26 to prevent cervical cell abnormalities (precursors to certain cervical, vaginal, anal, and oropharyngeal cancers) and genital warts. Outcomes have not yet been determined, given the vaccine’s limited time in use (CDC, 2008). Pregnancy From the early 1980s to the mid-1990s, there was a substantial increase in contraception use at first intercourse (48% in 1982 to 78% in 1995), largely the result of increased condom use (Phillips, 1997a). In 2005, 79% of females and 81% of males used some form of contraception at their first intercourse (Cox, 2008). However, 20% of young women remain unprotected at first intercourse. Subsequent intercourse is frequently protected: 91% of males and 83% of females reported using some form of contraception at their most recent intercourse, but condom use decreases with age, and only 45% of males report always using a condom (Cox, 2008). Among females age 15 to 19, only 70% took their oral contraceptive pill daily (Kirby, 2007). Teenagers are therefore not consistently protected against pregnancy (Abma, Martinez, & Copen, 2010). This is especially true for minority girls (36% of Hispanic teens versus 57% of Black teens versus 72% of White teens; see Cox, 2008). Effective contraception requires acceptance of one’s sexuality; acknowledgment of risk; access to contraceptives; planning ahead; ability to communicate with one’s partner; taking active measures on each occasion to prevent only possible future consequences; acceptance of side effects; coping with attitudes of peers, partners, family, and the larger community; and the perception of a positive future that will be threatened by pregnancy (see Phillips, 1997a). Even adults have difficulties in many of these areas, and, given their developmental stage, consistent contraception poses particular challenges for adolescents. These obstacles to contraception result in approximately 800,000 pregnancies annually among teenage girls (Cox, 2008). Although the teen pregnancy rate has dropped significantly from 1990 to 2002 (12% versus 8%), the U.S. rate is still one of the highest among Western industrialized nations (Ventura, Abma, Mosha, & Henshaw, 2006).

Adolescent Health

About 80% of pregnancies are unintentional; approximately half end in a live birth, and 35% end with a voluntary abortion (Cox, 2008). Abortion is almost always considered to be a negative event, although remarkably little is known about the decision-making process. The early literature on psychological sequelae of abortion focused on psychopathological responses, largely based on case studies or findings from self-selected groups. More recent empirical studies of American women undergoing legal abortions suggest that the experience does not pose major psychological hazards for most women (see Adler et al., 1992) with feelings of relief and happiness being reported more frequently and with more intensity than feelings of guilt and sadness. A systematic review of research with acceptable methodology reported no significant mental health sequelae in women with a history of elective abortions, whereas studies with flawed methodology reported negative psychological consequences (Charles, Polis, Sridhara, & Blum, 2008). While most women appear to cope well after an abortion, some do experience significant distress and other negative outcomes. This appears more likely for women with a prior history of mental health problems, whose culture or religion prohibits abortion, and/or who view pregnancy as highly meaningful; other factors include delaying abortion until the second trimester, perceived social support by parents and partner, expectations regarding coping well with abortion, and use of avoidance and denial coping strategies (see Major et al., 2009; Phillips, 1997a). The advent of nonsurgical (“medical”) abortions enables pregnancy to be terminated with abortion-inducing medications such as mifepristone (RU-486) and misoprostol. Research supports medical abortions as a safe and effective alternative to traditional curettage at earlier stages of pregnancy (less than 49 days of gestation), with benefits such as in-home administration, increased privacy, and avoidance of possible surgical complications and anesthesia (Newhall & Winikoff, 2000). Rates of medical abortions have increased from 0.4% of all abortions in 1997 to 11.1% in 2006, but adolescents are not likely to utilize this method since it often takes them longer to suspect and confirm pregnancy (CDC, 2009). Live births are of concern due to a variety of physical and psychosocial risks for the infant and mother (Kirby, 2007). One of these is the risk of teenage parenthood, which is highly likely, given that adoption has become an unpopular choice for White teenagers (3% elect adoption) and has historically been uncommon among Black teenagers (less than 1% elect adoption); teenage parents

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(especially mothers) are likely to complete less education, be socioeconomically disadvantaged, be unmarried in adulthood, and have more children (see Cox, 2008). Children of teen mothers suffer serious consequences: They grow up in less stimulating environments and have lower cognitive development and worse educational outcomes (Kirby, 2007). As with STD prevention, pregnancy prevention efforts that have emphasized abstinence only have generally had little effect (Friedman, 1998), but more comprehensive programs have had some success in postponing sexual activity among young teenagers (Kirby, 2007). The CDC’s 2010 summary of scientific efficacy for STD prevention programs identified core features of successful programs for youth: Programs should be delivered by trained instructors, be age-appropriate, and include components on skill building, support of healthy behaviors in school environments, and involvement of parents, youth-serving organizations, and health organizations (CDC, 2010b). Because STD and pregnancy are the result of similar risky behaviors, successful interventions share similar features: targeting specific behaviors, skills training, attitude change, and tailoring intervention to the teenager’s future goals (Cox, 2008; Phillips, 1997a). SPECIAL SERVICES FOR ADOLESCENTS Because of teenagers’ age and unique social status, special services relevant to health care can maximize their access to care and encourage good decisions. Some examples are legal guidance and school-based services in high schools and colleges. Legal Consultation While the legal aspects of health care are relevant for all age groups, they are particularly important for adolescents, given their unique in-between status. Care providers must become familiar with general constitutional principles, federal statutes, and the statutes of their own states. The most relevant issues relate to consent, confidentiality, and payment (see English, 2008). Adolescent providers confront a host of difficult circumstances in which these issues are commingled. For example, it is common for parents to request a drug screen for their teenager without his or her knowledge, and the parents are paying the bill. Who controls the medical record varies from state to state, with some denying disclosure to parents if the minor objects and some permitting noncontingent access by the parents. Patient–physician

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privilege can prevent physician disclosure in court in most but not all states (and may not extend to nonphysicians), but medical records can be subpoenaed. Most states permit minors to consent to treatment for contraception and pregnancy, communicable diseases, substance abuse, and emotional problems without parental notification, but provisions for abortion are highly variable and controversial; in some cases, the teenager may request judicial bypass by the court to avoid parental notification. Successfully navigating the challenges posed by most teenagers’ legal status requires, at a minimum, that education of adolescent health providers include the legal requirements and guidelines that apply to diagnosis, treatment, counseling, record keeping, and court testimony. The availability of good legal counsel for providers is also a necessity. Finally, many providers find that patient advocacy is facilitated by learning about inexpensive legal resources that can be accessed by their adolescent patients. School-Based Health Services One obstacle to good adolescent health care is the need to learn about and access services in hospitals and clinics, with attendant problems with transportation, payment, and potential parental knowledge. Efforts to facilitate care prompted a movement to expand health services available in schools. Prior to 1980, school health typically consisted of, at best, a nurse in a so-called health room and a school psychologist who provided psychoeducational assessment in multiple schools, with an extremely limited role for each professional; more extensive services were generally provided only for special education services. Given increased recognition of the new morbidity and the need for preventive services and intervention, the obvious advantages of providing services in the school fueled an expansion of school-based programs in the 1980s and 1990s. In addition to geographic ease of access, school-based services offer many advantages both to the individual patient and the student population in general. For example, a teenager can discreetly request treatment for a cold, feared pregnancy, or suicidal thoughts in the same general setting. Also, the overall school environment can be improved through special prevention programs and other collaborative efforts between health and educational staff. The obvious advantages of this approach led to amazing growth, with funded initiatives in more than 240 communities in the United States (Weist & Murray, 2007). Support from various federal and state agencies illustrates the recognition that mental health services are a crucial component of comprehensive services in the schools, although they confront ongoing challenges ranging from

funding problems to integration with community services and are still very far from being able to meet the national need (Weist & Murray, 2007). School-based health has come to refer to health services placed in elementary, middle, and high schools. Another component of school-based health, however, has been in existence for 50 years or more: college health services. Virtually all colleges and universities in the United States provide health services on campus for their students, and these services frequently include mental health (see Neinstein, Swinford, & Farrow, 2008). College health providers are also adolescent health providers and are well represented among the membership of the Society for Adolescent Health and Medicine (SAHM), formerly the Society for Adolescent Medicine (SAM). The line of demarcation between adolescents and young adults is so unclear that SAHM has adopted the formal position that adolescent medicine covers the ages of 10 to 25 (SAM, 1995).

FUTURE DIRECTIONS Empirical investigation of adolescent health has expanded and changed considerably over the past two decades. For example, Cromer and Stager (2000) analyzed articles published in the Journal of Adolescent Health Care from 1980 to 1998, reporting an increase in annual numbers of articles (69 to 169), a decreased proportion of medical topics (61 to 38%), and an increased proportion of psychosocial issues (23 to 50%). This change reflects increased awareness of the new morbidity and recognition of the relevance of psychosocial considerations to health risks, health promotion, and intervention. Also evident was the increasing participation of nonphysicians from nonpediatric disciplines, such as psychology, public health, and nutrition. These changes were accompanied by a shift in research design from retrospective reviews to crosssectional and longitudinal studies, although the percentage of experimental designs has remained low (never more than 5%). This increased scholarly activity has prompted numerous national reports summarizing current knowledge and identifying future directions for research. Members of the National Adolescent Health Information Center (Millstein et al., 2000) summarized recommendations from 53 national documents published between 1986 and 1997. They identified four major content areas as targets for future research: adolescent development, social and environmental contexts, health-related behaviors, and physical

Adolescent Health

and mental disorders. In each area, priorities focused on specific applications to health. For example, additional research on adolescent cognition is needed to address teenagers’ health beliefs and attitudes and decision making regarding health behaviors. In addition to content areas, Millstein and colleagues (2000) identified four cross-cutting themes that should be prioritized in future research: applying a developmental perspective to investigation of adolescent health, focusing on health rather than treatment of illness, recognizing the diversity of the adolescent population, and investigating multiple models of influence. For example, studies of causal influences should consider the interrelationships among biological, psychological, and social aspects of development; their effects on behavior and health; and the multiple sources of social and environmental influences on adolescent development and health. Millstein and colleagues (2000) note that implementing these research priorities will necessitate the requisite human resources and adequate funding. They recommend establishing a task force on training needs to identify gaps in training and propose training initiatives. Since children and adolescents currently receive less than 3% of national research funds, Millstein and colleagues (2000) also recommend establishing a task force on funding to increase available funds and identify those areas of high priority that are now most underfunded. As with other areas of research, implementing this research agenda will require strengthening the links between research and practice. Making the results truly useful will necessitate closer and stronger integration of research and policy. Most critical health objectives for teenagers and young adults remain unchanged from the late 1990s, despite a plethora of expert policy recommendations. Park and colleagues (2008) attribute this to the process of political change in the United States and to the U.S. approach to health policy, with infrastructure and funding focused largely on specific issues (e.g., teen pregnancy and tobacco use) rather than a population-based policy. The singleissue approaches that have seen improvement reflect a combination of good scientific evidence, dedicated advocates, public media campaigns, and effective laws and regulation (Park et al., 2008).

SUMMARY Social changes in the past half century have both expanded the concept of adolescence and markedly altered the

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threats to adolescent health. Biological changes in pubertal maturation have lowered the age at which adolescence begins, and economic and educational demands have expanded the upper limits of adolescence. Increased access to weapons, contraception, illegal substances, and motor vehicles, combined with changing social attitudes and reduced adult supervision (due to divorce and the increased proportion of working parents), has worsened the overall health status of contemporary American teenagers, compared with those in the 1950s and with Americans in all other age groups. At least 80% of morbidity and mortality in adolescence is behaviorally based and thus preventable or at least reducible. Improving adolescent health will require increased knowledge of effective prevention and treatment strategies, better dissemination of such information, and the willingness to make legislative and funding changes to enhance protective factors and reduce injury or risks. Health is more than the absence of disease; it includes the enjoyment of oneself and of life, together with the ready acceptance of personal and social responsibilities. Raising healthy adolescents will ultimately yield healthier and better adjusted adults. REFERENCES Abma, J. C., Martinez, G. M., & Copen, C. E. (2010) Teenagers in the United States: Sexual activity, contraceptive use, and childbearing, National Survey of Family Growth 2006–2008. National Center for Health Statistics. Vital and Health Statistics, 23 (30). Adler, N. E., David, H. P., Major, B. N., Roth, S. H., Russo, N. F., & Wyatt, G. E. (1992). Psychological factors in abortion: A review. American Psychologist, 47, 1194–1204. Aldenkamp, A. P., & Mulder, O. G. (1999). Psychosocial consequences of epilepsy. In A. J. Goreczny & M. Hersen (Eds.), Handbook of pediatric and adolescent health psychology (pp. 105–114). Boston, MA: Allyn & Bacon. Ali, M. M., Fang, H., & Rizzo, J. A. (2010) Body weight, self-perception and mental health outcomes among adolescents. Journal of Mental Health Policy and Economics, 13, 53–63. Allen, K. D., Warzak, W. J., Greger, N. G., Bernotas, T. D., & Huseman, C. A. (1993). Psychosocial adjustment of children with isolated growth hormone deficiency. Children’s Health Care, 22, 61–72. Allgood-Merten, B., Lewinsohn, P. M., & Hops, H. (1990). Sex differences and adolescent depression. Journal of Abnormal Psychology, 99, 55–63. American Academy of Pediatrics. (1978). A report by the Task Force on Pediatric Education. Elk Grove, IL: Author. American Association of University Women. (1992). How schools shortchange girls: The AAUW report: A study of major findings on girls in education. Washington, DC: American Association of University Women Educational Foundation. American Medical Association. (1994). Guidelines for adolescent preventive services (GAPS): Recommendations and rationale. Baltimore, MD: Williams & Wilkins. American Social Health Association. (2005). State of the nation 2005: Challenges facing STD prevention among youth—research, review, and recommendations. Research Triangle Park, NC: Author.

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Palfrey, J. S. (2009) How health care reform can benefit children and adolescents. New England Journal of Medicine, 361, e34–35. Pang, M. T., & Eichenfield, L. F. (2008). Acne. In L. S. Neinstein, C. M. Gordon, D. R. Katzman, D. S. Rosen, & E. R. Woods (Eds.), Adolescent health care: A practical guide (5th ed., pp. 299–308). Philadelphia, PA: Lippincott, Williams & Wilkins. Park, M. J., Brindis, C. D., Chang, F., & Irwin, C. E. (2008). A midcourse review of the Healthy People 2010: 21 critical health objectives for adolescents and young adults. Journal of Adolescent Health, 42, 329–334. Patel, D. R., Greydanus, D. E., & Rowlett, J. D. (2000). Romance with the automobile in the 20th century: Implications for adolescents in a new millennium. In V. C. Strasburger & D. E. Greydanus (Eds.), Atrisk adolescents: An update for the new century. Adolescent Medicine State of the Art Reviews, 11 , 127–140. Phillips, S. (1997a). Adolescent sexuality, contraception, and abortion. In J. D. Noshpitz (Series Ed.), L. T. Flaherty, & R. M. Sarles (Vol. Eds.), Handbook of child and adolescent psychiatry. Vol. 3: Adolescence: Development and syndromes (pp. 181–191). New York, NY: Wiley. Phillips, S. (1997b). Compliance with medical regimes. In J. D. Noshpitz (Series Ed.), L. T. Flaherty, & R. M. Sarles (Vol. Eds.), Handbook of child and adolescent psychiatry. Vol. 3: Adolescence: Development and syndromes (pp. 407–412). New York, NY: Wiley. Phillips, S. A., Moscicki, A. B., Kaufman, M., & Moore, E. (1998). The composition of SAM: Development of diversity. Journal of Adolescent Health, 23, 162–165. Phipps, S., & DeCuir-Whalley, S. (1990). Adherence issues in pediatric bone marrow transplantation. Journal of Pediatric Psychology, 15, 459–476. Pratt, H. D., & Greydanus, D. E. (2000). Adolescent violence: Concepts for a new millennium. In V. C. Strasburger & D. E. Greydanus (Eds.), At-risk adolescents: An update for the new century. Adolescent Medicine State of the Art Reviews, 11 , 103–126. Quittner, A. L., & DiGirolamo, A. M. (1998). Family adaptation to childhood disability and illness. In R. T. Ammerman & J. V. Campo (Eds.), Handbook of pediatric psychology and psychiatry: Disease, injury, and illness (Vol. 2, pp. 70–102). Boston, MA: Allyn & Bacon. Repetti, R. L., McGrath, E. P., & Ishikawa, S. S. (1999). Daily stress and coping in childhood and adolescence. In A. J. Goreczny & M. Hersen (Eds.), Handbook of pediatric and adolescent health psychology (pp. 343–360). Boston, MA: Allyn & Bacon. Resnick, M., Ireland, M., & Borowsky, J. (2004) Youth violence perpetration: What protects? What predicts? Journal of Adolescent Health, 35, 424–435. Rhee, H., Belyea, M. J., Cirzynski, S., & Brasch, J. (2009). Barriers to asthma self-management in adolescents. Relationship to psychosocial factors. Pediatric Pulmonology, 1, 183–191. Rosen, D. S., & Neinstein, L. S. (2008) Preventive health care for adolescents. In L. S. Neinstein, C. M. Gordon, D. R. Katzman, D. S. Rosen, & E. R. Woods (Eds.), Adolescent health care: A practical guide (5th ed., pp. 44–80). Philadelphia, PA: Lippincott, Williams & Wilkins. Ruggiero, L., & Javorsky, D. J. (1999). Diabetes self-management in children. In A. J. Goreczny & M. Hersen (Eds.), Handbook of pediatric and adolescent health psychology (pp. 49–70). Boston, MA: Allyn & Bacon.

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CHAPTER 20

Adult Development and Aging ILENE C. SIEGLER, MERRILL F. ELIAS, BEVERLY H. BRUMMETT, AND HAYDEN B. BOSWORTH

INTRODUCTION 459 PERSONALITY RESEARCH 461 A NEW LOOK AT RISK FACTORS AND DEMENTIA 462 POSITIVE EMOTIONS AND HEALTH

IMPLICATIONS OF POPULATION AGING 466 CONCLUDING THOUGHTS AND EMERGENT ISSUES 470 REFERENCES 471 465

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Elias, 1977), and emphasis on health psychology as an integral part of aging has developed since then. This is especially true since handbooks devoted to health psychology of aging (Aldwin, Park, & Spiro, 2007) and textbooks on geriatric medicine (e.g., Halter et al., 2010) and geriatric psychiatry (Blazer & Steffens, 2009) are updated regularly and provide detailed information about age-related changes, functional limitations, syndromes common at the end of life, and relevant treatment options. There is increased recognition that individuals now survive with multiple impairments, cognitive as well as physical. This calls into question the use of the life-span developmental perspective for a significant subset of the elderly for whom earlier eminence does not protect them (e.g., Bernice Neugarten, Juanita Kreps). Books in the popular press (e.g., Jacoby, 2011) are using age-based benchmarks as calls to action, warning those about to become elderly that their future may be difficult (see Fishman, 2011, for a review). Understanding the factors that can predict who will survive for significant periods in good health and who will survive with multiple health issues, disabilities, or frailty is a major challenge for the next decade of research. Providing improved diagnostic methods and treatments for those who become physically or cognitively impaired will provide a major opportunity for physicians, neuropsychologists, and clinical health psychologists. For many chronic diseases such as Alzheimer’s disease (AD; Welsh-Bohmer, Plassman, & Hayden, 2010), vascular dementia, stroke, coronary heart disease, and atherosclerosis, age remains the largest

Health psychology, as a discipline, has now fully absorbed and integrated the literature on health, risk factors, and diseases that increase in prevalence with advancing age (see Nezu, Nezu, & Geller, 2003). Consequently, the traditional review chapter that introduces aging content risk factor by risk factor or disease by disease is no longer necessary. One of the first books on adult developmental psychology to place a significant emphasis on the role of disease and health in aging was published in 1977 (Elias, Elias, & This research was support by NIH Grant # R01 HL55356 from the National Heart Lung and Blood Institute (NHLBI) and co-funding by the National Institute on Aging (NIA); P01 HL36587, Grant # IIRG-08-89565 from the Alzheimer’s Association and the Duke Behavioral Medicine Research Center (Siegler, Brummett). We wish to acknowledge the editorial work by Ms. Danielle Briggeman, The University of Maine, and Ms. Shirley Austin, Duke University Medical Center. This chapter was supported by research grants 1RO1-HL67358 and 1R01-HL081290 from the NHLBI, The National Institutes of Health to the University of Maine. The content is solely the responsibility of the authors and does not represent the official views of the NHLBI (Elias). This research is supported by a NHLBI grant (R01 HL070713), a VA Health Services Research and Development grant (20-034), an Established Investigator Award from the American Heart Association, and a VA Career Scientist Award (08-027) to the third author. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs (Bosworth). 459

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nonmodifiable risk factor for both men (D’Agostino et al., 2008) and women (Mosca et al., 2011). Understanding age as a risk factor for physical and mental illnesses and cognitive decline is a critically important task. In addition, frailty as a measure of functional health, independent of specific chronic disease conditions, needs to be considered (Buchman & Wilson, 2009). Demographic shifts in the population characteristics happen slowly, and data from the 2010 U.S. census are just now emerging. The major change reported to date is the increasing diversity of the population, including the elderly. The best current coverage of aging within various population groups can be found in Markides’s (2007) Encyclopedia of Health and Aging. Health disparities due to socioeconomic status, however defined, have profound effects on life expectancy, as well as the number of years of life lived without disability (see Crimmins & Hagedorn, 2010). Since the previous edition of this chapter (Siegler, Bosworth, & Elias, 2003), we have written a set of chapters on the intersection of the psychology of adult development and health psychology. These chapters provide background information on the theoretical issues and updated empirical findings, with a focus on longitudinal studies in adult development and aging (Siegler, Bosworth, Davey, & Elias, forthcoming; Siegler & Davey, forthcoming; Siegler, Elias, & Bosworth, forthcoming; Siegler, Hooker, Bosworth, Elias, & Spiro, 2010; Siegler, Poon, et al., 2009). It is interesting to note the extent to which the content of the other chapters in the edited volumes has changed to reflect the increased importance of public health issues while maintaining an attachment to psychological theories (see Suls, Davidson, & Kaplan, 2010). Some new developments within psychology and aging can be found in chapters in Costa and Siegler (2004) and on biobehavioral health issues in Whitfield (2010) and in the volume on epidemiology across the life span (Kuh & Ben-Shlomo, 2004). Our update in the developmental psychology volume (Siegler, Bosworth, et al., forthcoming) noted a major change in the organization of collaborative research that has long been a part of the culture of longitudinal aging studies and multicenter trials but is now enhanced by the ease of collaboration via the Internet, along with the requirements for data sharing mandated by federal funding rules. This enhanced data sharing brings new methodological challenges. Potential solutions are being devised that generally use sophisticated applications of mixed models and ways of

estimating missing data (Davey & Savla, 2010; Hofer & Piccinin, 2009). This developmental psychology chapter reviewed new data on the health status and normative behavior of centenarians from the Georgia Centenarian Study (Arnold et al., 2010; Davey et al., 2010), as well as other research programs that have studied extreme aging (see Poon & Perls, 2008). Briefly, less than 20% of centenarians are healthy until age 98 or older, and the prevalence of probable dementia was estimated to be around 60%. Living arrangements at the end of life, as well as lifetime educational attainment, are important predictors of physical and cognitive functioning (Davey et al., 2010). Genetic contributions hold great promise and are starting to increase our understanding of healthy aging and longevity (Jazwinski et al., 2010). Studies of centenarians challenge the tenets of life-span developmental psychology practically and theoretically. Traditional health–behavior relationships do not appear to be the same in the extreme elderly. When compared to individuals age 40 and older in the Health and Retirement Survey (HRS), centenarians in the Georgia Centenarian Study had different personality–health behavior associations for the five factors of personality with four behavioral risk indicators: smoking, drinking, being overweight, and exercise. There were no significant associations for exercise or weight in centenarians, whereas all five factors were related to exercise in HRS, and conscientiousness was associated with weight only in HRS (Siegler & Davey, forthcoming). Furthermore, centenarians with diabetes may also have lower, rather than higher, blood pressure, presumably due to the fact that those for whom blood pressure has been carefully treated and lowered are able to survive with diabetes (Davey et al., 2011). Such findings highlight the importance of taking age into consideration in all analyses of health–behavior relationships. In the current chapter, we address research and theory in adult development and aging that have the potential to be important for aging research in health psychology and opportunities for practice in clinical health psychology of aging in the decade ahead: (a) personality and prediction of disease, especially the potential for early Alzheimer’s disease and other dementias; (b) cognitive declines leading to physical health changes and the implications for research and treatment; (c) the importance of positive emotions in developmental health psychology; (d) health services research, multimorbidity, and delivery of care in the context of self-management of chronic diseases—an applied branch of health psychology; and (e) other emergent issues for the next decade.

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PERSONALITY RESEARCH Deary, Weiss, and Batty (2010) provide a useful discussion of how personality and intelligence across the life span might be related to health outcomes. In particular, they suggest that personality may be a marker for health. We would like to start our discussion with that comment by considering the issue of personality change as an early symptom of Alzheimer’s disease (AD) or other dementing disorders. However, for personality change to be important, we must have good data on normative expectations for stability and change over the life cycle. Terracciano, McCrae, Brant, and Costa (2005) use data from the Baltimore Longitudinal Study of Aging (BLSA) estimating intraindividual age trajectories of personality change on the five factors and 30 facets of NEO-PI-R (Personality Inventory–Revised; Costa & McCrae, 1992) with hierarchical linear modeling approaches. These techniques allowed data from 1,944 members of the BLSA age 20 to 96 with from 1 to 11 repeated measures for a total of 5,027 assessments to be used. Here, it is important to note that while approximately 85% of variance was stable, about 15% was due to intraindividual change, which the authors suggested could be due to life events, genetic variability, or the onset of a dementing disorder. Personality change as a signal of early dementia may also prove to be useful (Balsis, Carpenter, & Storandt, 2005; Duchek, Balota, Storandt, & Larson, 2007; Hooker, Hoppmann, & Siegler, 2010; Siegler, Bosworth, et al., forthcoming; Siegler, Dawson, & Welsh, 1994; Siegler et al., 1991; Robins-Wahlin & Byrne, 2010). New research on the neural basis of personality in neurodegenerative disease may provide a linkage, as different patterns of personality change in different neurodegenerative diseases imply relationships between personality traits and brain structures (Rankin, Baldwin, Pace-Savitsky, Kramer, & Miller, 2005; Sollberger et al., 2009). Research on AD has entered a new phase, with the results from multiple collaborative centers providing key data from neuroimaging studies (see Weiner et al., 2010) that suggest dementia may be predictable up to 10 years before onset from biomarkers found in cerebral spinal fluid indicators using a sophisticated mixture modeling approach, where about a third of cognitively normal subjects had the AD signature and were more likely to have an APOE ε4 allele (De Meyer et al., 2010). Such markers from living persons allow the prediction of AD as an outcome and the potential testing of treatments. Petersen and colleagues (2009) provide a 10-year review of the construct of mild cognitive impairment and the extent to

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which it converts to AD. The preclinical phase of dementia refers to a period of cognitive decline or milder deficit that precedes the onset of diagnosed AD. Early detection will be critical as research advances with regard to prognostic methods and therapeutic interventions. There is presently no cure, but slowing the disease is possible (AHRQ, 2004). In a 22-year prospective study of the Framingham cohort, 1,076 65- to 94-year-old persons, free from probable AD at baseline, were followed with a battery of cognitive tests for 22 years (Elias et al., 2000). The majority of participants remained free of AD (90%) through the surveillance period. Those who developed AD were divided into those for whom probable AD developed 5 years after baseline and those for whom probable AD was diagnosed 10 years after baseline. As compared to the nondemented subjects during the surveillance period, the 5-year dementia-free group exhibited lower cognitive scores at baseline in the domains of episodic memory, immediate and delayed, learning, and abstract reasoning. The 10-year dementia-free group showed lower cognitive performance at baseline but for fewer cognitive domains, namely, episodic memory-retained and abstract reasoning. Thus the preclinical period for dementia may last a very long time, offering a considerable period of time to consider treatment options that would slow the progress of the disease. This is consistent with a recent report indicating that beta-amyloid plaque on PET scans can precede AD symptoms by 10 years (Brice, 2010). Findings from Washington University (Johnson, Storandt, Morris, & Galvin, 2009) speak to transition from healthy aging to AD or dementia with longitudinal data on multiple aspects of cognitive functioning. Visuospatial declines were detected 3 years before diagnosis, global cognitive abilities about 2 years, and working memory declines 1 year before clinical diagnoses. Identifying this preclinical period may become more important if interventions or treatments can be identified. Psychological factors and their role in disease etiology and progression must be studied disease by disease and perhaps factor by factor. Studies of the role of personality as a factor in cancer risk may be retired (see Ranchor, Sanderman, & Coyne, 2010) at least for the associations of neuroticism and extraversion to cancer risk or survival (Nakaya et al., 2010). Furthermore, any cancer detection or treatment that is influenced by motivational and behavioral factors that change with age will continue to be important. As with other diseases, the aging of the population has significant implications for the increase in

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numbers and costs for cancer survivors and treatments in the decades to come (Malakoff, 2011). There are many studies showing psychological factors predict all-cause mortality; that is, they predict age at death. Siegler, Elias, and Bosworth (forthcoming) reviewed the literature on personality and survival. Metaanalyses suggest that positive traits are associated with longer survival and negative traits with shorter survival. Practically, it is hard to know how to interpret and apply these findings until we have studies that inform us of the mechanisms for these relationships or understand the extent to which they are consistent during the final 40 years of life expectancy from 65 to 105. Findings in epidemiology are suggesting that behavioral risk factor disease outcome studies are quite complex. The literature on overweight and obesity provides some excellent examples of the complexity. Personality is associated with overweight and obesity (e.g., Brummett, Babyak, et al., 2006); however, the relationship of body mass index (BMI) as a risk factor for disease is not the same as the relationship of the risk factor to mortality (Zajacova, Dowd, & Burgard, 2011). These associations are even more complex when age is taken into account. From the cardiovascular health study, Fitzpatrick and colleagues (2009) reported that BMI increases the risk of AD when BMI is measured in middle age but is protective after age 65.

A NEW LOOK AT RISK FACTORS AND DEMENTIA As the world’s population continues to age and live longer in good physical health, diagnosing, preventing, and treating dementias is of the highest priority. Prevention, treatment, and slowing these diseases will become increasingly important. A recent consensus conference that evaluated the strength of the evidence finds that, while promising, there are no behavioral risk predictors of dementia that have strong, consistent evidence (Daviglus et al., 2010). At present, there are no cures, but these may emerge in the next decade. Neuroimaging, cerebral blood flow studies, and postmortem necropsy play a critical role in these advances. However, studies of cognitive ability and personality will continue to be center stage in the health psychology of dementia, as cognitive research is critical to diagnosis, evaluation of treatments, and the charting of the progress of dementia once diagnosed. Given our emphasis in this chapter on a future where we will see even more older persons than we see now

and an increasing number of persons surviving into very old age, we will emphasize the need for more attention to vascular and mixed forms of dementia. Both types of dementia will become increasingly prevalent in an aging population, and the interaction between AD and vascular dementia (mixed dementias) will continue to become of greater concern. With the rising concern for AD, a disease characterized by shrinkage and loss of neurons, amyloid deposits, neurofibrulary tangles, and neuritic plaques (Keller, 2006), our emphasis on “arteriosclerosis of the brain” (circa 1899), multi-infarct dementia (circa 1985), and vascular dementia (circa 1985) as sources of catastrophic cognitive deficit took a backseat to AD (Bowler, 2005; Lockhart & De Carli, forthcoming). The reader may have noted that laypersons often use the terms AD and dementia interchangeably. We have noted that primary care physicians often convey a diagnosis of AD, either during treatment or postmortem, in the absence of adequate diagnostic investigation leading to this specific diagnosis. Often the explanation is that it really matters little because the consequences for the patient are the same. Clearly, the consequences are not the same for the individual, the families, and the caretaker. In the next decade, it is imperative that we improve our psychological approach to differential diagnosis of the dementias and that practicing physicians and laypersons become more informed as to distinctions between the types of dementia (Alagiakrishnan & Masaki, 2011). There are more types than vascular dementia (VaD) and AD dementia, but here we emphasize three major classifications: AD, VaD, and mixed VaD and AD. It is imperative that we continue and accelerate the current trend to refocus on vascular dementias (VaD, the mixed dementias with shared AD and VaD pathology) and the interactions between them. Mixed dementias (AD and VaD) are diagnosed when patients exhibit symptoms of AD dementia and cerebrovascular disease based on clinic examination or neuroimaging evidence of brain ischemia. The prevalence of mixed dementias increases with advancing age, as does the cascade of events affecting AD. Alagiakrishnan and Masaki (2011) make the following important points, to which we add comment. First, vascular dementia is the second-most-common form of dementia in the United States and Europe, with a prevalence rate of 1.5% in Western countries. In Japan, vascular dementia accounts for 50% of all dementias. In Europe, vascular dementia and mixed dementias account for an estimated 20 to 40% of the dementia cases. In a study by Roman and Kalaria (2006), one third of the patients with vascular dementia were found to have AD pathology. Second,

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patients who have experienced an acute stroke are at significantly increased risk for vascular dementia. Thus, it is not surprising that hypertension, diabetes, smoking, atrial fibrillation, peripheral vascular disease, and other risk factors for stroke are commonly seen in the clinical history of persons with vascular and mixed forms of VaD and AD (Alagiakrishnan & Masaki, 2011; Waldstein & Elias, 2001, forthcoming). Third, the risk for AD is increased in the presence of these same risk factors. The apoliprotein e4 alleles may play a general role in dementia and clearly increases the risk of dementia in stroke survivors (Alagiakrishnan & Masaki, 2011). Fourth, vascular dementia is not a single disease and thus does not have a single result in terms of cognitive performance. It includes (a) multi-infarct dementia, (b) vascular dementia due to a single strategically located infarct, (c) lacunar lesions, and (d) lesions caused by brain hemorrhage and other less frequent but not unimportant classifications (Alagiakrishnan & Masaki, 2011). Thus, specific cognitive domains may be affected in isolation or more acutely, or cognitive effects may be more diffuse. Vascular dementia may, or may not, be heralded by a specific pattern of cognitive deficit or result in specific deficits. It depends on the subclassification of vascular dementia and its interaction with AD pathology, and thus differential diagnosis is very challenging. Clinical diagnoses based on psychometric and neuropsychological assessment methods can play an extremely important role in the diagnosis and screening for dementia in the next 10 years. There is some progress, but we are in a relatively primitive state. Reviews by Bowler (2005) and Lockhart and De Carli (forthcoming) point out that overemphasis on AD has led to overemphasis on early episodic memory disorder as a predominant, if not necessary, early indicator of dementia. This is revealed in the predominance of memory in the formulations for diagnosing mild cognitive impairment introduced by Petersen and colleagues (1999). Nevertheless, these same reviews indicate that studies of VaD are increasing in number, and important information regarding differential diagnosis, AD versus VaD, or mixed dementias is emerging. In VaD, there is a history of vascular disease, and early indicators of cognitive deficit are more varied, as is the course of changes preceding diagnosis of the disease, and changes in episodic memory, if present, do not dominate (Bowler, 2005; Lockhart & De Carli, forthcoming). In VaD, there are changes in executive function, visuospatial skills, and possibly other abilities. In contrast, AD patients are particularly disadvantaged with respect to lexical and semantic knowledge and delayed episodic memory early in the progression of the disease. Careful reviews of this literature are essential to

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anyone entering this area of research, given rapid improvements in technology. Better definitions and understanding of AD and VaD will not be a walk in the park. Brain necropsy studies indicate that mixed forms of AD and VaD could have a prevalence as high as 25%, and vascular disease can predominate even in the presence of AD neuropathology (Bowler, 2005; Lockhart & De Carli, forthcoming). Moreover, as we have already seen, there are multiple subclassifications of VaD; it is not a single entity. This may be why there are currently at least eight published diagnostic schemes for VaD and two for AD, and various studies that have employed these various schemes do not obtain the same results when patients are assigned to diagnostic groups (Bowler, 2005; Lockhart & De Carli, forthcoming). Hopefully, improvements in neuroimaging methods such as amyloid scans (Brice, 2010) and cerebral blood flow studies will provide better criteria for confirming diagnoses based on cognitive patterns and the time sequence of deficits. Recent work by Jennings, Muldoon, Price, and colleagues (2008) and Jennings, Muldoon, Whyte, and colleagues (2008) indicating that cerebral blood flow dynamics change depending on the cognitive information processing task in interaction with task demands and treatment status is fascinating and informative but indicates that the diagnosis task may have to deal with even greater complexity. Mild Cognitive Impairment (MCI) Relating cardiovascular risk factors to continuously distributed neuropsychological test scores, often in nondemented and stroke-free patients, has been a mainstay of research in health psychology research and epidemiology (Waldstein & Elias, 2001). A relatively new latent variable construct, mild cognitive impairment (MCI), has entered the arena of research on precursors of cognitive deficit. This yes-no construct is very likely a result of the medical emphasis on presence or absence of disease. It was developed to reflect a stage of cognitive decline where individuals function cognitively at a level below expectations based on premorbid ability, age, and education level but do not rise to the level of dementia. Beginning with the diagnostic formulation by Peterson and colleagues (1999), which was largely influenced by AD and memory disorder, we have moved to multiple operational formulations for diagnosing MCI, each more complex than the other. To facilitate an understanding in medicine that cognitive impairment may be seen prior to vascular dementia, Bowler and Hachinski (1995) introduced the term vascular cognitive impairment, and more recently,

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the term vascular cognitive impairment–no dementia has been introduced (Stephan, Matthews, Khaw, Dufouil, & Brayne, 2009). These new concepts of predementia impairment may be viewed as pioneering advances in our recognition of precursors of vascular dementia, mixed forms, and the role of cardiovascular and vascular risk factors in AD.

When Does Dementia Begin: Enter Life Span Psychology A life span approach to health psychology is essential to an understanding of when dementia begins. Prevention is critical since we can only slow the rate of progression of AD, but vascular dementia, if recognized early, is preventable and treatable. In the next 10 years, we must achieve a better understanding of why subsets of individuals convert from normal cognitive performance to mild cognitive impairment and a subset of the MCI group progress to dementia. It is of importance to appreciate how closely the literature on cardiovascular risk factors and dementia, especially vascular dementia, is related to the literature on cognitive performance in persons free from mild cognitive deficit or diagnosed with MCI. This literature parallels the literature related to dementia (Waldstein & Elias, 2001, forthcoming), thus indicating that the process of cardiovascular disease (CVD) risk-factor-related cognitive decline, leading ultimately to dementia, starts early in life (Waldstein, 1995). There is what we refer to as the double-whammy phenomenon. Cardiovascular risk factors are risk factors for lowered cognitive performance long before dementia is recognized and probably prior to formal recognition of MCI (Elias, Goodall & Robbins, forthcoming; Waldstein, 1995). However, lowered cognitive performance is itself a risk factor for dementia (e.g., Elias et al., 2000). Second only to chronic kidney disease and heart arrhythmias in the elderly (e.g., Elias et al., 2009), in the next 10 years the emphasis on the impact of multiple cardiovascular risk factors on cognition (Elias, Elias, Robbins, Wolf, & D’Agostino, 2001; van den Berg, Kloppenborg, Kessels, Kappelle, & Biessels, 2009), especially investigations of metabolic syndrome (Kloppenborg, van den Berg, Kappelle, & Biessels, 2007) will be among the most important emphases in the health psychology of aging, given the rise of obesity and the survival of the elderly with diabetes. A good understanding of new contemporary research on risk factors and cognition and

needed future work may be found in Waldstein and Elias (forthcoming). Low Blood Pressure We would be remiss if we did not briefly note a growing literature indicating that chronic hypotension and orthostatic hypotension (hypotension seen with standing or change in posture) are potentially important risk factors for dementia. The World Health Organization defines hypotension as a systolic blood pressure (BP) below 110 mmHg in men and 100 mmHg in women. Some authors argue that low BP only becomes important in cognitive decline after the development of dementia (Alagiakrishnan & Masaki, 2011). This is clearly not consistent with a rapidly growing literature that indicates that hypotension is as much a prospective risk factor for dementia as hypertension and that this is especially true in the elderly and very elderly (Duschek & Shandry, 2007). There has been such a push to treat hypertension that the number of individuals with hypotension has increased, as we may be overtreating some individuals, particularly the oldest. Treatment of Dementia We cannot cure dementia, although several drugs result in a slowing of the progression of the disease (AHRQ, 2004), Because hypertension is a major risk factor for dementia, treatment of hypertension has been a frequent mode of attack with respect to reversing cognitive deficits at all levels of magnitude. With regard to reversing cognitive deficit in general, clinical trials offer some hope that some antihypertension drugs, used alone or in combination with other drugs, may protect against dementia. The amount of protection is minor from a clinical perspective, but any level of protection is important at a population level. Failure to show impressive reductions in BP and cognitive protection are largely related to very short follow-up times, ranging from 2.2 years in HYVET-COG (Peters et al., 2008) to 4.5 years in SHEP (Applegate et al., 1994) and MRC studies (Prince, Bird, Blizard, & Mann, 1996) and from the predominance of studies using few cognitive measures or the MMSE alone. The JNC-7 report (Chobanian et al., 2003) recommends that modifications in lifestyle should be the initial strategy for lowering BP. Given less than impressive success with drug intervention, it is reasonable and important to ask if cognitive improvement results from BP lowering in relation to diet and/or exercise. With respect to cognition, positive effects of diet have been reported (Scarmeas et al.,

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2009), and aerobic exercise training has been associated with modest improvements in processing speed, attention, and executive performance, with less consistent results for working memory (Smith et al., 2010). Thus, it is not unreasonable to expect concurrent improvements in cognition and BP with diet and exercise combined, especially in overweight individuals. More work needs to be done on exercise options for treatment in the elderly. As we leave this section on cognitive impairment, it is important to recognize that a substantial portion of older adults maintain adequate cognitive function in their eighth and ninth decades of life. These older adults demonstrate lower risk of death and functional decline (Yaffe et al., 2010).

POSITIVE EMOTIONS AND HEALTH Over the past several years, health psychology has begun to focus on the relationship between positive emotions and health outcomes, as opposed to examination of only negative emotional states. An emphasis is now placed on how one might achieve a higher quality of life and wellbeing as one ages, rather than simply trying to avoid many of the negative aspects of life that are present. Motivational theories of emotion hypothesize that a general purpose of positive emotion is to provide a respite from the stress associated with negative affectivity (Lazarus, Kanner, & Folkman, 1980); however, positive emotion probably serves other important functions. Fredrickson’s (1998) broaden-and-build model of positive emotions describes many of these functions. For example, positive emotions are said to lead to expansive behaviors that reflect greater psychological flexibility and resiliency, and to increased social support and social participation. These behaviors are believed to explain some of the health benefits of positive emotion. A key implication, therefore, is that positive emotions represent more than the absence of negative emotions. An important issue concerns the independence of positive and negative emotion. Although this debate is complex, the majority of researchers in this area agree that it is wise to treat positive and negative emotion as separate phenomena. This is important, given psychometric and physiological evidence for their independence (Robinson-Whelen, Kim, MacCallum, & Kiecolt-Glaser, 1997; Waldstein et al., 2000) and the fact that positive and negative emotions frequently correlate differentially with many constructs (Diener, Scollon, & Lucas, 2004; Huppert & Whittington, 2003; Lazarus, 1991; Lucas, Diener, & Suh, 1996),

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and finally that certain structures within the human brain are differentially related to the processing of positive and negative emotion (Davidson, 2003, 2004; Lane, Reiman, Ahern, Schwartz, & Davidson, 1997; Urry et al., 2004). Studies on aging and emotion indicate that positive affect increases with age (e.g., Stone, Schwartz, Broderick, & Deaton, 2010). Indeed, recent data presented by the Pew Research Center (2006) find that 38% of individuals 65 and older report that they are very happy, while this is only true for 28% of individuals age 18 to 29. There also exists a processing bias of positive over negative information (e.g., Carstensen, 2006) with increasing age. Therefore, cognitive decline with age is only part of the story, as evidence indicates older individuals pay more attention to positive emotional stimuli, experience less anger, and may regulate their emotions more effectively (Mather & Carstensen, 2003). One area of investigation that provides a hypothesis regarding changes in emotional responding across the life span is Carstensen’s socioemotional selectivity theory (SST) (Carstensen, 2006; Charles & Carstensen, 2004; Scheibe & Carstensen, 2010). The SST posits that growing awareness of limited time brings with it change in motivational set such that individuals focus on information that will ultimately increase or maintain a positive emotional state—known as the positivity effect. In addition, with aging there seems to be an increasingly adaptive regulation in response to negative events (Charles & Carstensen, 2004; Scheibe & Carstensen, 2010). Such findings suggest that with aging, information is evaluated differently, and this may result in lowered reactivity to, and perhaps faster recovery from, negative information, and that older individuals may maintain more positive responding to positive information. In related research, Blanchard-Fields, Stein, and Watson (2004) examined problem solving in older individuals and how emotional processing may result in practical benefits. This research indicates that older adults, as compared to younger individuals, may be better at solving problems of a social nature, are more likely to use passive as opposed to active approaches for regulating their emotions, and are less likely to experience anger. This preference for positive information as we age has also been shown to be associated with hypothetical health-related decisions. For example, when reviewing choice criteria about physicians and health-care plans, older adults recalled a greater proportion of positive information than younger individuals (Lockenhoff & Carstensen, 2007). With regard to health benefits, in a recent review of the pathways that link positive emotion and health later in life,

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Ong (2010) concludes that positive emotions lead to health benefits in later life that ultimately may delay functional declines in resilience. Multiple broad mechanisms have been proposed to link positive emotion and better health. Specifically, positive emotional traits have been associated with better health habits, such as exercise, diet, and sleeping patterns (Pressman & Cohen, 2005). Positive emotions have also been related to neuroendocrine, immune, and cardiovascular functions that are in the causal pathway to numerous disease outcomes (Brummett, Boyle, Kuhn, Siegler, & Williams, 2009; Steptoe & Wardle, 2005). Increased physical functioning later in life is yet another way in which positive emotion may be beneficial with respect to health and longevity. Several longitudinal studies that have adjusted for negative emotions have shown that positive emotions are associated with better physical function in older individuals (Brummett, Babyak, Grønbæk, & Barefoot, 2011; Brummett, Morey, Boyle, & Mark, 2009; Ostir, Berges, Ottenbacher, Clow, & Ottenbacher, 2008; Ostir, Ottenbacher, & Markides, 2004). The ability of positive emotions to undo the negative effects of stress reactivity may be yet another beneficial effect. For example, in individuals age 60 to 87, it has been shown that positive emotions reduce the effects of negative emotions with regard to blood pressure reactivity (Ong & Allaire, 2005). Research indicates that positive emotions are associated with increased longevity in both clinical and population samples. We have shown that positive and depressive emotion ratings, assessed using the NEO-PIR facets E6Positive Emotion and N3-Depression, are joint predictors of 11-year survival in a sample of 866 cardiac catheterization patients (Brummett et al., 2005). During follow-up, 415 deaths occurred. Both positive and depressive emotion ratings were individually associated with survival, adjusted for risk factors related to cardiac mortality. In a nonclinical sample (Brummett et al. 2006), we examined a measure of optimistic-pessimistic explanatory style (PSM), derived from college entry Minnesota Multiphasic Personality Inventory scores, as a predictor of all-cause mortality over a 40-year period using data from the 6,958 participants of the University of North Carolina Alumni Heart Study. PSM scores were evaluated using a Cox proportional hazards regression model, adjusted for gender. During the follow-up period, 476 deaths occurred. Pessimistic individuals who scored in the upper tertile of the distribution had decreased rates of longevity as compared to optimistic individuals who scored in the bottom tertile of the distribution. Thus, a measure of optimisticpessimistic explanatory style, a construct that has been

associated with positive emotion, was a significant predictor of survival over a 40-year follow-up period, such that optimists had increased longevity. In sum, evidence from multiple well-conducted studies indicates that the experience of positive emotions, independent of negative emotional experience, is related to better physical health and decreased mortality. Intervention strategies that enhance positive emotion, especially among vulnerable older individuals, may increase overall health and well-being.

IMPLICATIONS OF POPULATION AGING The aging of the population and the increasing prevalence of chronic diseases pose challenges to the health systems of many countries. These challenges are directly associated with current and expected demographic trends that may far exceed their financial resources. The United Nations (2006) has reported that the world’s population will continue to grow and age, reaching 9 billion by 2050, and in the developed countries, the number of people over 60 years old is expected to almost double, from 245 million in 2005 to 406 million in 2050. Closely tied to this phenomenon of aging populations are rising rates of chronic illnesses, such as heart failure, hypertension, chronic respiratory diseases, and diabetes (World Health Organization, 2005). It is generally recognized that the chronically ill use medical, hospital, and emergency services more often. Many of these chronic conditions are complex conditions whose optimal management requires multiple lifestyle changes, including dietary, physical activity, medication taking, and self-monitoring. Many of these regimen requirements are made difficult by broader social influences, including our current “obesogenic environment” (Fisher et al., 2005; Sallis, Owen, & Fisher, 2008). These concerns have largely been ignored by health psychologists. In addition to these demographic and environmental factors contributing to a growing prevalence of chronic diseases, the shortage of health professionals has become a problem around the world. This lack of health professionals also imposes certain constraints in almost all countries, rich and poor alike. According to World Health Organization estimates, 57 countries are experiencing acute shortages of health professionals (Verboom, Tan-Torres, & Evans, 2006). Chronic diseases, specifically, cardiovascular diseases (CVD), have become the leading cause of death and disability in most countries in the world (Kearney et al., 2005; Levenson, Skerrett, & Gaziano, 2002). In the United

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States, an estimated 81.1 million persons have CVD, and coronary heart disease (CHD) and stroke remain the firstand third-leading causes of death, respectively. CVD also carries an enormous personal and financial burden (the total direct and indirect cost of heart disease and stroke in the United States for 2010 is estimated at $503.2 billion) (American Heart Association, 2010). These epidemiologic data, integrated within the context of an inadequate number of health professionals and unsustainable health-care expenses, define a burning platform for prevention, the incorporation of strategies that allow patients to take more control over their illnesses, and opportunities for health psychologists as researchers and as service providers. Managing a chronic illness is a time-consuming and complex process. Patients and their formal and informal caregivers are required to make day-to-day decisions about such actions as how to respond to new symptoms, what and how much to eat, whether to take their medication, or whether to exercise—all of which can have substantial effects on their clinical outcomes, particularly when the decisions are aggregated over months and years. These day-to-day decisions and tasks are referred to as selfmanagement, which was formally defined by Barlow and colleagues (2002) as “the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition.” All patients with chronic disease selfmanage; the question is how well they self-manage and its influence on the patient’s experience of chronic disease and health outcomes. An important goal for our health system is to discover effective interventions that improve patients’ ability to self-manage and implement them in practice. Identifying effective interventions to improve patients’ ability to self-manage their health is an important role for health psychologists, given the lack of adequate primary care providers in the health-care system. The potential benefit of interventions to improve patients’ self-management and subsequent health behaviors exceeds that of interventions aimed at health-care providers, in part because unhealthy behaviors may contribute more than inadequate health care does to poor health and premature death. Unhealthy behaviors such as smoking, poor diet, and sedentary lifestyles account for as much as 40% of premature deaths in the United States, whereas deficiencies in health-care delivery account for only 10% (Schroeder, 2007). Thus, with recent discussions of health-care reform, focus on self-management in chronic diseases is likely to increase. Self-management is more than simple adherence to provider recommendations because it also incorporates

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the psychological and social management of living with a chronic condition. Indeed, self-management consists of the following components: engaging in activities that promote physical and psychological health, interacting with health-care providers and adhering to treatment recommendations, monitoring health status and making associated care decisions, and managing the impact of the illness on physical, psychological, and social functioning (Clark et al., 1991). To a great extent, patients’ outcomes will be dictated by the degree to which these choices lead to improved risk reduction (Bosworth, Powers, & Oddone, 2010). Self-monitoring and technical skills related to the management of specific diseases, such as blood glucose monitoring for diabetes or blood pressure monitoring for hypertension, are widely recognized as essential components of traditional patient self-care. This remains true in cases where individuals with complex needs must care for specific medical conditions for which monitoring is helpful. Such self-monitoring provides objective information that may increase awareness of the effects of medications, permit timely therapy adjustment, improve patient adherence, and improve health outcomes. For example, the use of home BP monitoring has improved treatment adherence and BP control (Bosworth, Olsen, Grubber, et al., 2009; Pickering et al., 2008). There is little evidence regarding monitoring physiologic parameters in the context of complex self-care. It is likely that such monitoring is of benefit when the disease affected is a priority for the patient and the monitoring does not overwhelm an existing self-management routine. Given that complex patients are likely to have several self-management needs or concerns, prioritization and goal setting are critical. Complex patients and their physicians, however, may disagree about which problems are most important to target (Bayliss et al., 2007). Ideally, targets should be selected on the basis of importance, patient motivation, and readiness for self-care. Selecting the wrong target or initiating too many changes at once can overwhelm the patient and lead to poor adherence (Bodenheimer, Lorig, Holman, & Grumbach, 2002). Evidence suggests that long-term benefits may require an ongoing collaborative process between patients and professionals (Mensah et al., 2005; Norris, Engelgau, & Narayan, 2001). Studies conducted among individuals with chronic conditions demonstrate that many patients struggle with selfmanagement (Bodenheimer, Lorig, et al., 2002; DiMatteo, 2004; Kinmonth, Woodcock, Griffin, Spiegal, & Campbell, 1998; Steven, Morrison, & Drummond, 2002) and as a result suffer from inadequate disease control, reduced

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quality of life, and poor psychological well-being (Juenger et al., 2002; Pincus, Griffith, Pearce, & Isenberg, 1996; Rubin & Peyrot, 1999). Patients’ ability to self-manage may be influenced by the demands of their illness(es) and their social and economic circumstances (Clark et al., 1991). For patients with multiple or complex conditions (multimoribidity), the time, effort, and cost of effective self-management from the patient perspective can be challenging (Bayliss et al., 2007). Time limitations, competing demands (Bernard, Anderson, Cook, & Phillips, 1999; Rost et al., 2000), the burden of comorbid illness, and inadequate mechanisms for follow-up all constitute barriers to effective self-management. The self-management training needs of complex patients are likely to change over time as symptoms fluctuate or additional chronic illnesses develop. Individuals may respond to self-management support training more when confronted with a life-threatening event than when a problem is initially diagnosed. Changes in life circumstances may also trigger the need for additional self-management support training. For example, a man who has successfully managed his multiple chronic conditions for years with the help of his wife may be at a loss if his spouse dies. Periodic reassessment of self-management needs and patient priorities is therefore crucial for maintaining optimal health. Thus, it becomes quite apparent that those trained in health psychology, behavioral medicine, and health services research are well positioned to lead the implementation of self-management programs. Self-management in many ways is applied health psychology—the goal is to understand initiation and maintenance of multiple behaviors and beneficial thoughts in an attempt to improve outcomes. Self-efficacy, a concept familiar to health psychologists, plays a vital role in self-management outcomes. Self-efficacy is composed of efficacy expectations and outcome expectations. Efficacy expectations are the person’s perceived ability to perform a specific behavior; outcome expectations are beliefs about whether a specific behavior will cause a certain outcome (Bandura, 1977). High-level self-efficacy is an important prerequisite to realize the goals of self-management, and it is also the crucial factor for people to switch to healthy lifestyles and maintain health status (Bodenheimer, Lorig, et al., 2002). Like self-efficacy, depression is also an important psychological indicator related to self management. Higherlevel depression leads to decreased motivation to care for the disease, as well as decreased physical activity and poor dietary choice (Ciechanowski, Katon, Russo, & Hirsch,

2003). As depression levels increase, fewer people are able to actively engage in self-management activities. Health status and quality of life (QoL) are two relevant evaluation indicators for self-management. QoL and health status are both able to reflect the effectiveness and effects of self-management programs. As multidimensional evaluation indicators, health status and QOL have become very useful in self-management outcome appraisal. Health service utilization is an evaluation indicator that cannot be overlooked when self-management programs are assessed. Stakeholders generally are interested in health service utilization and financial outcomes. In theory, self-management is able to lessen more medical expenditures, compared with traditional clinical models. It is important to bear in mind that measuring only the health service utilization or the cost is too narrow because the reduction in cost that is expected to result may not be seen during the same time period. Research and practice of self-management have been improved by a larger understanding of the context or framework in which these health-care decisions are made. One framework that contextualizes patient self-management within a larger health system and community is the chronic care model (Bodenheimer, Wagner, & Grumbach, 2002). This model emphasizes the role of patients with chronic conditions as being their own principal caregiver and the importance of provider, family, and community support in self-management (Bodenheimer, Lorig, et al., 2002; Scisney-Matlock et al., 2009). In effect, patients are at the center of the care model, with providers, family, and community interacting in different ways to influence and support health decisions. This model of care recognizes a collaborative partnership between the patient and provider, each with their own expertise in managing that person’s health, to share in the decision-making process. This collaborative partnership between patient and provider is important in supporting the patient’s management of chronic disease over multiple encounters and adjustments in the treatment plan to achieve optimal care. Patients with complex chronic illnesses require both disease-specific and generic self-management skills to optimize their health. This in turn may require input from providers with differing areas of expertise. Therefore, patients will benefit from well-coordinated care teams that include a contact person for primary patient communication. Collaborative care to promote improved selfmanagement in populations with complex medical needs has been described in the geriatric literature (Callahan et al., 2006; Fenton, Levine, Mahoney, Heagerty, & Wagner, 2006; Sommers, Marton, Barbaccia, & Randolph,

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2000). Components of these programs may be particularly relevant for self-management support for complex patients. In addition, certain self-management approaches have been translated for use in more heterogeneous patient populations. However, most programs to date have targeted individuals with a specific disease (Chodosh et al., 2005). Delivery of Self-Management Support Traditionally, patient education has been delivered through one-on-one teaching. However, given the time demands on providers, alternative methods of delivery merit consideration for addressing the needs of growing numbers of complex patients. Group self-management training programs have been found to be as effective as one-on-one teaching and more efficient, while providing additional benefits (e.g., social learning) (Deakin, McShane, Cade, & Williams, 2005; Edelman et al., 2010; Voils et al., 2009). Over the past few decades, other effective modalities for delivering skills training have been developed. These include telephone counseling, automated telephone disease management programs, Internet-mediated programs, and in-home tele-health communication devices (Bosworth, Powers, et al., 2011; Bosworth, Olsen, Dudley, et al., 2009; Shah et al., 2011; Voils et al., 2009). Lorig, Ritter, Laurent, and Plant (2006) demonstrated the efficacy of an Internetbased chronic disease program using chat rooms as a virtual support group. The feasibility and cost-effectiveness of such approaches are not entirely clear, especially since some patients don’t have computers or phones, or have limited experience in their use. While providing increased access and convenience for many patients, such modalities may be inappropriate for or inaccessible to some patient populations. Allowing patients to chose the modality that best suits their needs and preferences may be the best way to maximize success (Lorig & Holman, 2003). Here we provide two recent examples of selfmanagement programs. The Hypertension Intervention Nurse Telemedicine Study (HINTS) involved a sample of veterans with poor BP control at baseline enrolled in three Veterans Administration hospital-based primary care clinics (Bosworth et al., 2007). We enrolled 593 hypertensive adults; 38% were functionally illiterate, and 48% were Black. Participants were randomized to one of four arms (usual care, tailored behavioral adherence intervention, medication management, or a combined behavioral adherence and medication management intervention). For intervention-arm patients, the nurse-administered intervention was activated only when a patient’s home BP

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monitoring indicates inadequate BP control based on home BP values. Patients assigned to the behavioral intervention received a nurse-administered tailored self-management intervention to promote hypertension treatment adherence. The behavioral management intervention consisted of 11 tailored health behavior modules focused on improving hypertension self-management. The use of tailored feedback allowed the nurse to address issues that were specifically relevant to a particular patient (Woolf, 1992). The specific behaviors addressed in the intervention included: hypertension knowledge/risk perception, medication memory, social/medical environment (e.g., provided community and hospital resources to improve health-care access), patient–provider relationship, and adverse effects of antihypertensive medication. Patients were also provided evidence-based recommendations regarding hypertension-related behaviors, including salt intake, weight, stress reduction, smoking cessation, and alcohol use. Verbal information was reinforced with mailed handouts. To ensure that the tailored information was standardized, the nurse used an intervention software application that contained predetermined scripts and patient-specific tailored algorithms for the modules. Each encounter that was triggered by 2 weeks of poor home BP monitoring consisted of three or four modules and lasted 12 to 14 minutes. Patients randomized to the medication management arm had decisions concerning their hypertension regimen made by a study physician and implemented by a nurse using a hypertension decision support system. The retention was 87%, and SBP declined for the combined arm, –4.2 mmHg at 18 months. Among those with poor BP control at baseline, systolic BP improved in the combined group by 15.7 mmHg at 12 months and 9.0 mm Hg at 18 months, relative to usual care (Bosworth, Powers, et al., 2011). As an example of a programmatic or implementation study, in 2008, we provided a self-management program, tailored to patients and administered by registered nurse (RN) care managers in a Medicaid setting, to improve hypertension medication adherence as measured by prescription fill patterns. While in this quality initiative, only medication possession data were available, the program focused on adherence to treatment, including medication. Focusing on medication adherence among a population of Medicaid patients is important because these individuals typically are sicker, have more comorbidities, and are more likely to be struggling with other nonhealth stressors that result in barriers to receiving care, relative to individuals with private insurance (Kronick, Bella,

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Gilmer, & Somers, 2007). The program implemented was based on prior work indicating that improvement in medication adherence was a driving factor in demonstrating improvements in systolic blood pressure and blood pressure control in primary care clinics in the Veterans Health Administration (Bosworth, Olsen, Dudley, et al., 2009) and university-affiliated primary care clinics (Bosworth, Olsen, Grubber, et al., 2009). The nurse case managers aimed at calling patients nine times over the course of 9 months; 560 patients had a least one phone call. This was done by three case managers who were fitting the project into their daily routines, so costs of the intervention were not supported through new funding, unlike the prior studies mentioned. We observed an improvement of medication possession from 55% 9 to 12 months prior to program enrollment to 77% 9 to 12 months after initiation of the program. Among 4,000 controls, pill refill remained constant at about 55% during the 12 months (Bosworth, DuBard, et al., 2011). Role of Health Psychology and Aging in the Future There is a growing need for research on multiple health behavior interventions capable of being translated into practice (Goldstein, Whitlock, & DePue, 2004; Prochaska, Spring, & Nigg, 2008). Much of health psychology research has been conducted in academic settings and has not addressed real-world challenges or the context of primary care. In addition, there is increasing awareness that individual behaviors do not exist in a vacuum and that for every change in one behavior, there is an impact on another. For most of the chronic diseases that are epidemics among older adults, multiple behaviors are responsible. Chronic diseases are increasing in prevalence and, with the aging of the U.S. population, pose challenges to our national health-care system. Individuals with chronic diseases must initiate and maintain multiple complex behaviors to attain long-term control, such as diet, exercise, smoking, alcohol use, and medication adherence. Furthermore, to ensure adequate treatment adherence, effective treatment requires patients to develop collaborative relationships with health-care providers and the greater health-care system. There has been a gap between knowledge and translation of effective self-management interventions into practice. There are at least two barriers to closing this gap. First, providers often remain unconvinced that sufficient evidence exists to support the implementation of research-tested clinical services in real-world practice settings (Lamb, Greenlick, & McCarty, 1998, p. 39).

Second, implementation of evidence-based clinical services requires systemic organizational changes that create a supportive infrastructure and culture in primary care settings. The use of pragmatic trials (Thorpe et al., 2009; Tunis, Stryer, & Clancy, 2003)—which are different from traditional efficacy studies in that they employ heterogeneous samples, studied in multiple representative settings, use outcomes important to decision and policy makers, and study real-world comparison conditions—are needed. Heterogeneity of patient characteristics exacerbates the difficulty in translating evidence-based recommendations to patients with chronic diseases. Patients’ preferences, health literacy, and economic and social resources, individually and collectively, influence what constitutes optimal patient-centered care (Durso, 2006). These include symptomatic depression, financial constraints, being overwhelmed by one dominant condition, compound effects of multiple conditions and medications, and low selfefficacy for self-management tasks (Bayliss, Steiner, Fernald, Crane, & Main, 2003). Health literacy deficits may also impede self-management in this population, as planning and implementing therapeutic regimens depend on reading comprehension.

CONCLUDING THOUGHTS AND EMERGENT ISSUES Does what we do about healthy aging matter? Fishman (2010, p. 50) raises an alarming concern in a Sunday New York Times piece, that “high costs of keeping our aging population healthy and out of poverty has caused U.S. and other rich democracies to lose their economic and political footing.” As boomers age, and competition for resources intensifies, choices made by individuals and by policy makers will matter. What role does our research have in informing these discussions? The first set of issues revolves around what to do when diagnosis is ahead of treatment. Similar to genetic counseling, when can we identify early AD in individuals, and does the individual have a right to know? What about family members? What about insurance companies? Changes in the knowledge about AD will take it from risk to actual known disease, which will provide incredible opportunities for research and possible treatments but leave individuals and their families with difficult choices to make. For example, there will be a large cohort of aging individuals with serious problems to confront, such as living with multiple chronic diseases in addition to AD. How should these other diseases be treated if one is suffering

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from AD? Can health psychology help address this gap between diagnosis and treatment? Within health psychology, there have been attempts to define the problem. Nicassio, Greenberg, and Motivala (2010) note problems with comorbidity that affect practice and research in clinical health psychology, and Qualls and Benight (2007) discuss clinical health geropsychology. There is little evidence that the field is prepared for such challenges. Second, as the population ages, we expect to observe significant stress–health effects, and keeping an open mind regarding the positive psychosocial factors that may buffer such deterioration through psychological resilience is needed. Identifying targets for preventive behavioral interventions, such as training in stress coping skills and interventions designed to enhance well-being, may be productive. In addition, knowledge of positive psychological factors may also be useful with regard to implementation of existing successful interventions. Interestingly, results from a recent meta-analysis suggest that not only are positive emotion interventions successful in increasing wellbeing and reducing distress but also they also seem to be most effective in older individuals (Sin & Lyubomirsky, 2009). Third, there are long-standing methodological and measurement issues that we must address in the next 10 years if we are to advance with respect to cognitive research and clinical practice with the elderly using cognitive measures. The widely used measures of cognitive function are clinical tests, often subtests taken from lager instruments. These clinical tests are impure (Elias et al., 1977; Rabbitt, 1997); that is, they measure more than one cognitive ability or construct. Further, they often confound test difficulty with test content. The solution here is to use a larger battery of tests and to combine individual tests into composites that measure a specific cognitive domain—speed of performance, executive functioning, episodic memory, and so forth. One can combine tests into composite on a theoretical basis or on the basis of principal components analysis and theory, a subtype of factor analysis. This approach has been employed (e.g., Dore, Elias, Robbins, Elias, & Nagy, 2009; Elias et al., 2009), but studies with a few tests, each representing a cognitive domain, are predominant in the medical and epidemiological literature. This is a consequence of the fact that large previously archived data sets of the type used by epidemiologists often involve few cognitive tests. In clinical trials, subject time is limited, and often cognitive performance is of secondary concern. Another solution is to use laboratory-type information-processing tasks that can very precisely operationally define a specific cognitive ability (Elias & Elias,

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1993). This approach has been used but is impracticable because the resulting tasks are time-consuming and very difficult in general for persons who are in the early stages of dementia. They are certainly unsuitable for general use in clinical practice or where time efficiency is of importance. Future solutions will relate to (a) more informed use of cognitive test measures, (b) understanding that multiple test batteries are important, (c) higher priority of test batteries adequate for factor analytic methods, and (d) development of time-efficient information-processing laboratory tasks. Finally, self-management support for persons with chronic care needs requires an individualized approach that acknowledges and addresses existing challenges at patient, provider, and health policy levels. This support should help patients and providers prioritize multiple competing demands; educate providers to value and solicit patient preferences in developing individualized care plans, including appropriate goal setting and psychosocial support; implement new and existing technologies to optimize self-management; and build on the efficiencies realized by nontraditional modalities of delivering self-management support. Given the increase in chronic diseases among the elderly and a lack of primary care providers, the role of health psychologists in developing and evaluating programs that improve outcomes for individuals in a cost-effective way will only become more critical as health-care costs and resources are scrutinized more in the future and should provide a major role for health psychologists to become more involved in aging issues.

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CHAPTER 21

Women’s Health Psychology PAMELA A. GELLER, ALEXANDRA R. NELSON, AND ALEXA BONACQUISTI

INTRODUCTION 477 PHYSICAL HEALTH ISSUES 478 MENTAL HEALTH ISSUES 484 STRESSFUL REPRODUCTIVE HEALTH ISSUES 489 HEALTH CARE 493

SOCIAL AND CULTURAL INFLUENCES ON WOMEN’S HEALTH 496 CONCLUSIONS AND FUTURE DIRECTIONS IN WOMEN’S HEALTH 499 REFERENCES 503

INTRODUCTION

national entity, was created. Pinn (1994) remarked that the ORWH functions for three major purposes:

Women represent approximately 51% of the U.S. population (U.S. Census Bureau, 2010), yet only in the 1990s did women’s health begin to gain recognition as an important area of research. Prior to 1990, limited medical research attended to the many health issues important to women, and women were consistently underrepresented in clinical trials. According to the American Medical Association’s Council on Ethical and Judicial Affairs (1991), research focused on men because “a woman’s menstrual cycle may often constitute a separate variable affecting test results,” thereby requiring researchers to apportion funds and develop a plan to monitor women’s hormone levels throughout the experimental process. Researchers also were hesitant to conduct studies on women in their childbearing years for fear of affecting fertility (American Medical Association [AMA], 1991). The research that was completed with women stemmed from a biomedical perspective and largely focused on diseases that affect fertility and reproduction. As a result, women traditionally have received diagnoses and treatment based largely on research conducted on men, as in the case of coronary heart disease, which is discussed later in this chapter. According to Haynes and Hatch (2000), several occurrences fueled the emergence of action in women’s health in the past decade. First, a report from the General Accounting Office (GAO) highlighted the National Institutes of Health’s (NIH) failure to include women in research (Nadel, 1990). Then, in response to the GAO report, the Office of Research on Women’s Health (ORWH), a

1. To strengthen, develop, and increase research into diseases 2. To ensure that women are appropriately represented in research studies 3. To direct initiatives to increase the number of women in biomedical careers Finally, the NIH Revitalization Act of 1993 was passed, which mandated that women and minorities be included in federally funded research, including clinical trials. The ORWH continues to collaborate in partnership with the NIH institutes and centers to ensure that women’s health research is a priority within NIH and throughout the scientific community (ORWH, 2009). Whereas there had been a biomedical focus, researchers and clinicians now recognize the importance of addressing women’s health issues from a more comprehensive perspective that involves biological, psychological, and sociological aspects of women’s lives. Such a biopsychosocial framework involves the complex interaction of biological, physiological, economic, political, environmental, psychological, cultural, and familial components (American Psychological Association, 1996). This chapter provides an introduction to a range of pertinent issues in women’s health to increase awareness of the needs of women among researchers and health practitioners and suggests areas in need of further attention. For a comprehensive examination of the field of women’s health psychology, also see Spiers, Geller, and Kloss (in press). We consider women’s health from a global perspective, 477

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including information on gender health disparities, ethnic and racial differences, and social and cultural contexts and influences. In general, we suggest that further exploration of gender differences in symptom presentation, diagnosis, prognosis, risk factors, treatment effectiveness, and psychosocial factors for various disease entities is needed to enhance appropriate prevention and intervention strategies for women and their families. We begin with a review of prevalent physical and mental health issues experienced by women with attention to gender-specific research and clinical considerations relevant to psychologists and medical providers. We include a discussion of stressful, yet common, women’s reproductive life events, such as infertility and miscarriage. The chapter explores women’s relationships with the health-care system, including their roles as health-care consumers, interactions with health-care providers, and decision making and information seeking in the contexts of advancing and emerging technologies. The influence of socioeconomic status and gender roles as they relate to women’s health and quality of life is also addressed. We conclude with a commentary regarding the current status of women’s health, the unique experiences and contributions of women in health care and mental health fields, and our expectations regarding future research directions and clinical applications of women’s health psychology. PHYSICAL HEALTH ISSUES There are numerous physical health issues women confront throughout their life span. Mortality statistics indicate that women live longer than men, while morbidity statistics suggest women are less healthy. Therefore, although they are living longer, women in all parts of the world face a disproportionate decline in health over time as compared to men. Presenting issues related to prevalence, gender and ethnic-racial group differences, risk factors, and treatment, this section focuses on the leading causes of death and injury among women around the world, as well as chronic physical health conditions that are more prevalent among women. Although great strides have been made in research addressing women’s physical health, comprehensive investigation of gender differences and global health disparities in the diagnosis, treatment, and prevention of morbidity and mortality among women is still needed. Coronary Heart Disease Coronary heart disease (CHD) is the leading cause of death for both men and women in the United States and

around the world (World Health Organization [WHO], 2008; Heron, 2010). CHD is characterized by a narrowing of the coronary arteries, usually due to atherosclerosis (thickening of the arteries), which can prevent oxygen and nutrients from entering the heart. Myocardial infarction (MI; heart attack) occurs when oxygen and/or blood cannot enter the heart. It has been estimated that in the United States approximately 8.8 million men and 7.5 million women have a history of CHD, MI and/or angina pectoris, which is chest pain due to lack of blood and oxygen entering the heart (American Heart Association [AHA], 2012a, 2012b). Although prevalence rates are similar for men and women, more women die from CHD each year than men. In 2004, global estimates indicated that cardiovascular diseases caused almost 32% of all deaths in women while accounting for only 27% of all deaths in men (WHO, 2008). Additionally, women are twice as likely to die following MI as men (Solimene, 2010). Mortality rates among women with CHD increase as women get older, and CHD is most common among postmenopausal women over the age of 60 years (Stoney, 1998). Regardless of age, however, Black women, followed by Hispanic women, have a higher risk of disability or death due to CHD than White women (AHA, 2012b), even after controlling for socioeconomic status (SES) (U.S. Department of Health and Human Services [DHHS], 2006). Differences according to race in presenting symptom patterns, type and intensity of selected treatment, and quality of hospital where treatment was received all may contribute to this racial health disparity (McSweeney et al., 2010; Popescu, Nallamothu, Vaughan-Sarrazin, & Cram, 2010; Vaccarino et al., 2005). CHD risk factors for men and women include cigarette smoking, family history of CHD, high blood pressure, high cholesterol, diabetes, physical inactivity, poor diet, and obesity (Bittner, 2000; Newton, Lacroix, & Buist, 2000). These risk factors often are interrelated. For example, diabetes often is associated with high blood pressure, high cholesterol, and obesity (see Newton et al., 2000). Women tend to develop heart disease 10 to 15 years later in life on average than do men, and Black and Hispanic women in particular are more likely to have chronic, comorbid risk factors (e.g., diabetes and hypertension), which can make diagnosis, detection, and treatment of CHD extremely difficult (U.S. DHHS Office on Women’s Health, 2009). Reduction of risk factors has been demonstrated to decrease morbidity and mortality in both genders; however, it appears that targeting specific risk factors known to apply to men may not be as effective for women (Blum & Blum, 2009). Additional research is

Women’s Health Psychology

needed to determine optimal risk reduction behavior for women, as the clinical outcomes between men and women may differ, depending on the risk reduction approach used. Heart attack symptoms in women often differ from those in men, resulting in women not seeking medical attention promptly or having their symptoms misdiagnosed (Arslanian-Engoren et al., 2006). Data from the Worcester Heart Study, a large population-based investigation, indicate that women are less likely than men to present with a chief complaint of chest pain, which also contributes to the misdiagnosis of their symptoms and delay in appropriate treatment provision (Milner, Vaccarino, Arnold, Funk, & Goldberg, 2004). Further research is needed to examine gender differences in symptom presentation to prevent the delay of a CHD diagnosis in women to the later stages of the disease, when prognosis is poor, or from having the disease go completely undetected. In addition, increased public and health-care provider awareness of CHD risks and consequences in women is also needed, as a persistent gap between perceived risk and actual risk of CHD still remains, and this gap is largest among those women at highest risk (Mosca, Ferris, Fabunmi, & Robertson, 2004). Research has indicated that sex and ethnic-racial status can determine the course of treatment for patients with CHD. For example, Schulman and colleagues (1999) found that the sex and ethnic-racial status of a patient influenced whether a physician referred patients with chest pain for cardiac catheterization. In this study, different actors portrayed patients with identical histories, and researchers controlled for personality characteristics. Regardless of patients’ clinical presentation, these physicians were less likely to recommend cardiac catheterization for women; this was particularly true for Black women. In addition, Vaccarino and colleagues (2005) found that Black women have both the lowest rate of intervention use and the highest mortality rate when they examined gender and racial differences in MI. Likewise, Steingart, and colleagues (1991) found that physicians tend to be less aggressive in their management approach to CHD in women than in men. Women with CHD were less likely to undergo cardiac catheterization and coronary bypass surgery than men. The results could not be accounted for by coronary risk factors or cardiovascular medications, two reasons a physician may use a less aggressive approach. Women reported more cardiac disability than men but were less likely to undergo aggressive procedures to address their symptoms or improve functioning. This may be a result of differences in symptom presentation, as women are more likely to report nonchest pain (Canto et al., 2007). In addition, minority women

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in particular more often experience prodromal symptoms, which could affect the diagnosis and subsequent management of CHD (McSweeney et al., 2010). In summary, women with CHD often display different symptomatology than men with CHD, which may help explain why women delay seeking treatment. Subsequently, prevention efforts should focus on educating women and health-care practitioners about the typical symptoms of CHD among females to facilitate women in seeking prompt medical attention when CHD symptoms arise. In addition, prevention efforts should focus on publicizing risk factors for CHD in women and developing strategies to reduce and manage risk factors, especially among Black women, who have the highest risk of developing CHD and the worst prognosis after MI. Furthermore, studies indicate physicians are less likely to perform aggressive coronary techniques (e.g., cardiac catheterization and coronary bypass surgery) on women than on men, and further research is warranted to assess whether this underutilization is appropriate. Historically, women have been excluded or underrepresented in cardiovascular research “because they are either of childbearing age or are elderly with coexisting illness” (Sechzer, Denmark, & Rabinowitz, 1994). Although women have achieved equality in terms of participation in research as a whole (e.g., according to the National Institutes of Health [NIH; 2008] in 2006, 55% of clinical trial participants were women), it remains unclear how well women are represented in research on diseases that affect both genders, such as CHD (Berlin & Ellenberg, 2009). Because women often experience greater disability after MI, it is imperative that future research efforts include women in sufficient numbers to examine gender differences in symptom presentation, risk factors, and treatment options. These factors can help inform the development of psychosocial interventions. For example, clinical health psychologists may be consulted to help with patient adherence to diet, exercise regimen, and stress management to promote healthy functioning in women with CHD. Cancer Cancer is implicated in the deaths of millions of women worldwide. Globally, cancer is the third-leading cause of death for women of all ages, behind CHD and infectious and parasitic diseases (WHO, 2008). Cancer is the secondleading killer of American women (CDC, 2006a). Given the impact of cancers affecting women, scholarly and clinical attention is an important domain for clinical health psychologists. This section presents a brief discussion of

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the two leading causes of cancer death among women in the United States: lung cancer and breast cancer. Lung Cancer Lung cancer is the leading cause of cancer death among U.S. women (American Cancer Society [ACS], 2010). Lung cancer has the fourth-highest incidence rate for women worldwide (after breast, colon and rectum, and cervix uteri cancers) but has the second-highest mortality rate behind breast cancer (ACS, 2011). It is estimated that 1,378,400 deaths occurred globally from lung cancer in 2011 (951,000 men and 427,400 women), and an estimated 1,608,800 new cases occurred (1,095,200 among men and 513,600 among women). According to Pinsky (2006), incidence rates for lung cancer differ between racial and ethnic groups and are not always accounted for by differences in smoking habits. In addition to cigarette smoking, risk factors for lung cancer include exposure to secondhand smoke, asbestos, and certain metals and chemicals, as well as air pollution, history of tuberculosis, and genetic predisposition. Among American women, deaths from lung cancer surpass those from breast cancer, although overall death rates do appear to be stabilizing or even decreasing as a result of decreased smoking rates (ACS, 2011). Despite the recent decline in smoking in the United States (Jemal et al., 2011), there is a great need to examine cigarette smoking in women as a function of coping, stress reduction, and the alleviation of depression and anxiety, and as a strategy employed to suppress appetite. Prevention strategies should continue to focus educational efforts about the risk of lung cancer associated with cigarette smoking on women, especially younger women, when the onset of smoking occurs. Moreover, health psychologists should continue to assist in the development of smoking cessation programs designed to address concerns specific to women, such as weight gain associated with smoking cessation. Breast Cancer Breast cancer is the second-leading cause of cancer death among American women from all age groups and is the most common cancer among women worldwide (ACS, 2011). It is estimated that 1,383,500 new cases of breast cancer in women occurred globally in 2008, and 458,400 women died from breast cancer in 2008 (ACS, 2011). Although breast cancer incidence is similar in both developed and developing countries, women from developing countries are more likely to die from breast cancer than women in developed countries (ACS, 2011). In addition,

while White women have a higher age-adjusted incidence rate of breast cancer, Black women are more likely to die from breast cancer than White women (U.S. DHHS, 2007). Positive news is that the incidence of breast cancer among American women decreased between 1999 to 2006, and mortality rates have been decreasing steadily since 1990. The decrease in mortality rates is probably attributable to better treatment, earlier detection, and decreased overall incidence (ACS, 2010). Risk factors for breast cancer are considered modifiable or nonmodifiable. Age is the most significant nonmodifiable risk factor for breast cancer, and risk increases with age. Others include family history, early onset of menstruation or late cessation of menstruation, high breast tissue density, high bone mineral density, and hyperplasia, which is a condition characterized by abnormal cell growth. Modifiable risk factors include being overweight or obese, undergoing long-term hormone replacement therapy, having a lower physical activity level, and having a greater amount of alcohol consumption. Modifiable reproductive factors include the use of oral contraceptives and the decision if and when to initiate pregnancy, as never becoming pregnant or experiencing one’s first pregnancy after age 30 can increase breast cancer risk (ACS, 2010). In part because of the efforts of women’s health advocacy groups, breast cancer research is one of the few areas pertinent to women’s health that has received a tremendous amount of attention. In the past decade, there has been a proliferation of breast cancer studies, with a particular focus on treatment choices and psychosocial interventions and outcomes (Rowland, 1998). In other words, research has focused not only on medical treatment options but also on the psychological and sociological effects of the disease (e.g., coping skills and importance of social support). Recent research has emphasized posttraumatic growth and benefit finding as potential positive outcomes of a breast cancer diagnosis (Bellizzi & Blank, 2006; Cordova et al., 2007; Sears, Stanton, & Danoff-Burg, 2003). In addition, numerous educational programs stress the importance of routine screening, and attempts have been made to make mammography accessible to all women. Consequently, women with breast cancer are being diagnosed in the earlier stages of the disease, when the chance for recovery is greater. For American women diagnosed with early-stage breast cancer, the 5-year survival rate is 98% (ACS, 2011). This rate differs between developed and developing countries; however, the most influential factor in breast cancer survival is stage at diagnosis and, subsequently, the degree of metastasis to lymph nodes and other organs (ACS, 2011). Health-care providers also have

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increased the use of breast-sparing approaches and adjunctive treatment, such as chemotherapy, radiotherapy, and hormonal therapy. As a result, women are provided with treatment choices, and fewer have to undergo the more aggressive treatments that can greatly affect women’s body perception and self-identity (e.g., mastectomy). In addition to increasing awareness of breast cancer and treatment options, health psychologists can help women diagnosed with the disease and their families adjust to what can be traumatic effects of surgery, as well as manage side effects associated with nonsurgical intervention, such as anticipatory nausea, hair loss, and fatigue. Stroke Stroke, the third-leading cause of death for American men and women, occurs as a result of a blocked or ruptured artery. The brain is then deprived of needed oxygen, and brain cells begin to die. Stroke occurs at a higher rate among Black and Hispanic women than among White women (CDC, 2010a). Risk factors for men and women include high blood pressure, cigarette smoking, diabetes, and high cholesterol. Although men are more likely to experience a stroke, 60% of deaths due to stroke are in women (CDC, 2010a). Therefore, it is critical for research to be conducted on gender-related differences in risk factors, symptoms, and outcomes. Current research on gender differences has yielded mixed results. Arboix and colleagues (2000) noted that limited research is available examining gender-related differences in “risk factors, clinical presentation and mortality rates” of stroke patients. Therefore, they examined differences in vascular risk factors, clinical manifestation, and progression of the disease among men and women. The findings demonstrated major gender differences: Women have different predictive risk factors for stroke than men, including obesity, congestive heart failure, atrial fibrillation, hypertension, limb weakness, and age. The results also suggest that women suffer more severe strokes, resulting in higher in-hospital mortality, higher neurological deficits, and longer hospitalization. On the contrary, a recent review of 10 studies found that significant gender differences in stroke symptoms and risk factors were not apparent, though one study did indicate that women may experience more so-called nontraditional symptoms, such as nonspecific symptoms or a change in mental status (Beal, 2010). Research to examine gender differences in terms of risk factors, prevention, intervention, and psychosocial effects is needed. This is an area in which health psychologists can help women adjust to the physical and neurocognitive sequelae

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of stroke (e.g., physical limitations, memory loss, speech deficits). Chronic Obstructive Pulmonary Disease Chronic obstructive pulmonary disease (COPD) includes chronic bronchitis, emphysema, and asthmatic bronchitis, which are conditions that obstruct airflow from the lungs. COPD is a leading cause of death among women in the United States, and in 2005, more women died from COPD than men (Akinbami & Liu, 2011). Although prevalence rates traditionally have been higher among men than women, in the last decade, men have experienced decreased death rates due to COPD, while death rates from COPD for women have remained consistent (Akinbami & Liu, 2011). Risk factors for COPD differ between developed and developing countries. In the United States and other developed countries, the prevalence of COPD is due primarily to tobacco use, while asthma, air pollutants, genetic factors, and other respiratory infections also contribute. In developing countries, the quality of indoor air may be a more influential factor in terms of occurrence and progression of COPD (CDC, 2011a). Researchers are beginning to explore possible gender differences in the diagnosis and prognosis of the disease. Silverman and colleagues (2000) reported that women may have a higher risk of developing severe COPD due to gender differences in genetic predisposition. Moreover, Chapman, Tashkin, and Pye (2001) reported that COPD is underdiagnosed in women (i.e., doctors are more likely to diagnosis men with COPD than women), which may have implications for treatment and prognosis if the disease is detected at a more advanced stage in women. A recent review indicated that women and Black people may endure the highest mortality rates associated with COPD and that gender and race may affect both COPD course and outcome (Kirkpatrick, Dransfield, & Varkey, 2009). However, more research is needed on non-Black minorities and women, as these groups are less represented in clinical trials evaluating COPD. Again, as in lung cancer, health psychologists have the ability to assist with COPD prevention by developing and facilitating effective smoking cessation programs. HIV/AIDS Human immunodeficiency virus (HIV) causes acquired immune deficiency syndrome (AIDS), a serious global health concern affecting as many as 33.4 million people worldwide (Joint United Nations Programme on

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HIV/AIDS [UNAIDS] & WHO, 2009). In the United States, AIDS is the fifth-leading cause of death among women between the ages of 35 and 44, and the thirdleading cause of death among Black women in this age group (CDC, 2008a). There have been dramatic increases in rates of HIV/AIDS around the world since the first reported occurrence, with approximately one in four new infections diagnosed in women (CDC, 2008a). Women most commonly acquire HIV infection through high-risk heterosexual contact (CDC, 2008a). Despite a woman’s individual desires to avoid HIV infection, a number of psychosocial, cultural, and interpersonal factors may limit a woman’s ability to engage in HIV risk reduction (CDC, 2008a; Gielen et al., 2007; Logan, Cole, & Leukefeld, 2002). Therefore, a woman changing her own behaviors to reduce her HIV risk does not always result in a decrease in mortality or morbidity because women often are affected by the risk behaviors of their partners. This is particularly true for women who are in controlling and abusive relationships (Campbell et al., 2008; Tufts, Clements, & Wessell, 2010), which seems especially relevant, given that two thirds of HIV-infected women (as well as two thirds of women at risk for HIV infection) experience intimate partner violence (IPV) during their lifetimes (Gielen et al., 2007). Research on gender differences in risk factors, as well as research addressing gender differences in treatment, prevention, and psychosocial effects (e.g., caregiving, social support, stigmatization, depression), is growing. Such research is helping to inform clinicians and health-care providers of the unique effects of HIV/AIDS on women’s health and the needs of women living with HIV/AIDS (e.g., family planning) and could assist in the development of improved prevention and psychosocial treatment protocols for women and their families. Prevention intervention efforts should include components that educate women about possible risk behaviors of their partners and their impact on the contraction of HIV and sexually transmitted diseases (STDs). One prevention intervention protocol targeting women with chronic mental illness aims to increase the use of female-controlled methods of STD/HIV prevention to give women more control in limiting their risk of infection through heterosexual contact (Collins, Geller, Miller, Toro, & Susser, 2001). See Carey, Scott-Sheldon, and Vanable (this volume) for additional information on HIV/AIDS. Intimate Partner Violence Intimate partner violence (IPV) is a leading cause of injury, disability, and death for women in the United

States and around the world (Plichta, 2004; Tjaden & Thoennes, 2000; WHO, 2005). Women experience IPV at higher rates than men, and women are more likely to endure more severe physical, psychological, and behavioral consequences as a result of abuse (Plichta, 2004; Tjaden & Thoennes, 2000). Typically defined as a stressful life experience that occurs within the context of a current or former intimate relationship, IPV encompasses physical, psychological, and sexual abuse, including isolation, economic control, and threats of violence (CDC, 2010b). More reliable tracking systems for monitoring violence against women need to be instituted, but estimates suggest that 1.5 million women experience IPV annually in the United States (Tjaden & Thoennes, 2000), and globally, 29 to 62 percent of ever-partnered women have experienced physical or sexual violence by an intimate partner (WHO, 2005). IPV occurs among all ethnic, racial, and socioeconomic groups. Victims of IPV often present in a variety of healthcare settings, including emergency departments, primary care, gynecological services, and dental offices. Women who are victims of IPV seek treatment for injuries sustained as a result of being physically abused (e.g., bruises, lacerations, fractures, and dental injuries), as well as for many other health issues, including headaches, gastrointestinal problems, gynecological concerns, chronic pain, pulmonary problems, and mental health issues (Bailey & Daugherty, 2007; CDC, 2011b; Heise & Garcia-Moreno, 2002; Plichta, 2004). The effects of IPV are far-reaching and long-lasting; in many cases, psychological distress persists even after the woman has left the abusive relationship (Ruiz-P´erez & Plazaola-Casta˜no, 2005; Scheffer Lindgren & Renck, 2008). Moreover, victims of IPV are more likely than nonvictims to present with such somatic and mental health problems as chronic pain syndrome, stomach ulcers, irritable bowel syndrome, insomnia, depression, anxiety, posttraumatic stress disorder, dissociative disorders, eating disorders, and substance abuse (Dutton, Haywood, & El-Bayoumi, 1997; El-Bayoumi, Borum, & Haywood, 1998; Golding, 1999; Stewart & Robinson, 1995). Intervention strategies should continue to focus on the implementation of IPV screening instruments in various health-care settings, including emergency rooms, primary care, and gynecological services, when feasible and appropriate, as not all studies have demonstrated the benefits of universal screening (see MacMillan et al., 2009). However, by increasing awareness and educating staff in these settings about IPV, appropriate referrals can be made and supportive interventions can be applied. Psychologists and

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health-care providers should be educated about the high incidence of IPV among women and be trained in appropriate screening and intervention strategies to help protect women and their families, such as setting up safety plans before the woman leaves the treatment setting.

2000). Further research should explore the etiology and psychosocial factors of the disease. Finally, there is a need for health psychologists to facilitate the development of pain management strategies (e.g., relaxation training, medication adherence, exercise) and strategies for coping with decreased physical mobility.

Chronic Health Conditions

Fibromyalgia

This section presents a brief overview of chronic illnesses that are more prevalent among women. These diseases are persistent, debilitating, and frequently related to a myriad of psychosocial effects (e.g., depression, unemployment, inability to care for children). Controversy as to whether these conditions are medically based or psychological in nature often interferes with diagnosis and treatment planning. Although attention is increasing as to importance, further research is needed to explore etiology, risk factors, treatment options, and psychosocial effects of these chronic health conditions.

Fibromyalgia is characterized by widespread pain, decreased pain threshold, and persistent fatigue. Women represent the majority of patients living with this disease, with a 3.4% prevalence rate, compared to 0.5% in men (Lawrence et al., 2008). Symptoms include diffuse aches and pains, sleep disturbance, fatigue, headaches, irritable bowel syndrome, and psychological distress. Patients with this disorder often have difficulty pinpointing the location of their pain. Diagnosis can be difficult because no single test is available to determine the presence of the disease. Therefore, diagnosis often is made after testing for other disorders reveals negative findings or after patients are misdiagnosed because symptoms are similar to another disorder, such as chronic fatigue syndrome. In addition to improving underlying sleep disorders, the treatment of fibromyalgia has focused on the use of antidepressants, muscle relaxants, and exercise programs. Treatment efforts have been largely unsuccessful because the use of antidepressants, exercise programs, and cognitive behavioral therapy has shown only short-term improvement or mild effectiveness (see Hawley & Wolfe, 2000, for a review). The diagnosis and treatment of fibromyalgia have been controversial because the symptoms often mimic other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine) and are typically both physical and psychological in nature (Goldenberg, 2009). However, not all patients with fibromyalgia have comorbid psychiatric symptomatology or disorders. Furthermore, because the diagnosis of fibromyalgia is based solely on self-reported complaints of pain, women with this disorder may experience minimization or trivialization of their symptoms by health-care providers. An interdisciplinary team approach is recommended to address the multiple problems and offer treatment options. Further research is warranted into ethnic-racial differences, etiology, diagnosis, and treatment of this disease. Health psychologists can assist in screening for mental health disorders in this population, as well as in teaching women to recognize the relationship between physical and psychological symptoms, use relaxation techniques in response to pain, and manage stressors and psychosocial difficulties related to their symptoms to improve their quality of life, as individuals

Arthritis According to the CDC (2011b), arthritis is more likely to affect women, with age-adjusted prevalence rates in women being 24.3% compared to 18.3% in men. By 2030, it is estimated that two thirds of the individuals with arthritis will be female (CDC, 2011b). Rheumatoid arthritis (RA) is the most common cause of chronic inflammatory arthritis, causing inflammation in the lining of joints and/or other internal organs (Arthritis Foundation, 2011). In recent years, the prevalence of RA has increased among older individuals but decreased for younger age groups, and the prevalence among women is estimated to be double that of men (Helmick et al., 2008). The etiology of RA remains unknown, although it is considered to be a combination of genetic, lifestyle, and environmental factors (Arthritis Foundation, 2011). Treatment consists of reducing inflammation and slowing disease progression through the use of medication and engaging in lifestyle changes, such as increased physical activity, stretching, and maintaining a healthy diet (Arthritis Foundation, 2011; see Davis, Burke, Zautra, & Stark, this volume). The fact that RA can appear in middle age raises questions as to how the disease affects reproductive events such as pregnancy and breastfeeding. Chakravarty, Nelson, and Krishnan (2006) found that after accounting for age, women with RA had a higher risk of adverse pregnancy outcomes and longer hospitalization than a comparison group of pregnant women in the general population. Subsequently, research is beginning to explore the relationship between RA and fertility (for a review, see Dugowson,

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with fibromyalgia tend to report lower quality of life than patients with other chronic illnesses (CDC, 2010c). Osteoporosis Osteoporosis is a debilitating disease characterized by the loss of bone mass, which often leads to bone fractures. The most common fractures occur in the hip, spine, or wrist and can cause severe disability or death. Women make up 80% of all osteoporosis cases in the United States, and half of women over age 50 will experience a fracture that is due to osteoporosis (National Osteoporosis Foundation, 2011). In terms of ethnic and racial differences, White women are most likely to experience fractures related to osteoporosis. However, Black women have higher mortality rates from fractures and longer hospital stays, which may be due to differences in age at time of fracture, other comorbid conditions, or health disparities (for a review, see Cauley, 2011). The risk factors for osteoporosis include being female, having a small frame, older age, and family history. Research also indicates that caffeine intake, alcohol intake, cigarette smoking, and lack of exercise can be associated with lower bone mass resulting in higher risk of fracture (Kaplan-Machlis & Bors, 2000). Prevention and treatment efforts often focus on decreasing the risk of fracture, but educating women about the importance of calcium intake in the prevention of osteoporosis may be the most productive in decreasing women’s mortality. To be effective, prevention needs to begin at an early age for girls. Health psychologists may be able to assist with osteoporosis prevention through the development of effective national awareness programs for women and children. MENTAL HEALTH ISSUES This section presents a brief overview of issues related to prevalence, gender differences, and risk factors for the categories of mental disorders most prevalent among women—depressive disorders, anxiety disorders, and eating disorders. Given that women with substance use disorders are more likely to experience severe physical and mental health effects, we also present relevant data on nicotine and alcohol use. Further research is needed addressing gender differences, the etiology of these disorders, and prevention strategies for these mental health problems in women. Depressive Disorders Depression is a serious health problem for women; in fact, it has been reported as the leading cause of disability for

women worldwide (Murray & Lopez, 1996; WHO, 2008). Major U.S. epidemiological studies such as the Epidemiological Catchment Area (ECA) Study, the National Comorbidity Survey (NCS), and the NCS Replication (NCS-R) indicate that women are nearly twice as likely as men to be affected by major depressive disorder and dysthymia (Kessler et al., 1994, 2003; Robins, Locke, & Regier, 1991). Worldwide, similar patterns indicate 1-year and lifetime population-based prevalence rates that are 1.5 to 2 times higher in women than in men (Waraich, Goldner, Somers, & Hsu, 2004). According to the NCS-R, U.S. lifetime prevalence rates for a major depressive episode are 20.2% for women and 13.2% for men, and U.S. lifetime prevalence rates for dysthymia are 3.1% for women and 1.8% for men (National Comorbidity Survey Replication, 2007). International rates follow similar sex-specific patterns but are lower for Major Depressive Disorder (MDD) and higher for dysthymia, with population studies indicating lifetime prevalence rates among women of 7.5% and 4.3%, respectively (Waraich et al., 2004). According to the National Epidemiologic Survey on Alcohol and Related Concerns (NESARC), women are also more likely than men to suffer from chronic major depression persisting for at least 2 years (Blanco et al., 2010). Although gender differences begin to emerge with the onset of puberty, the average age of onset of major depression is approximately 25, with the highest prevalence rates for women between 18 and 44 years (Kessler, McGonagle, Swartz, Blazer, & Nelson, 1993). Pregnancy and postpartum are high-risk times for depression, with postpartum depression occurring in as many as 19.2% of women in the first 3 months after they have given birth (Gavin et al., 2005). New incidence of depression during this period has been identified in 14.5% of women. Depression during pregnancy has been linked to factors including anxiety, life stress, prior history of depression, lack of social support, domestic violence, unintended pregnancy, noncohabitation and intimate relationship quality, and public insurance (Lancaster et al., 2010). Women may also report significant increases in affective symptoms occurring cyclically during the premenstrual phase, known as Premenstrual Syndrome (PMS) and Premenstrual Dysphoric Disorder (PMDD), the latter of which is a more severe presentation (American Psychiatric Association, 2000). Respectively, such conditions affect 20 to 40% and 3 to 8% of women (Logue & Moos, 1986; Mishell, 2005). Women with premenstrual problems have higher rates of anxious and depressive symptoms and are more likely to be overweight or obese, drink heavily, and smoke cigarettes

Women’s Health Psychology

than women without these problems (Strine, Chapman, & Ahluwalia, 2005). Rates of depression are higher for women with certain physical illnesses. For example, depression is comorbid in over 25% of women with diabetes (Pan et al., 2011), 10 to 25% of women with breast cancer (Fann et al., 2008), 12 to 23% of women with gynecological cancers (Massie, 2004), and 19.4% of women infected with HIV (Morrison et al., 2002). The presence of depression among individuals with physical illnesses may increase risk for morbidity and mortality; for example, risk for mortality is elevated for women with comorbid diabetes and depression compared to women with only one of these conditions (Pan et al., 2011). These statistics highlight the importance of examining the interaction between mental and physical health to increase the quality of women’s lives. The etiology of depression in women remains a conundrum in the research community. Risk factors for the occurrence of a major depressive episode include family history of psychiatric illness, adverse childhood experiences, personality characteristics, isolation, and stressful life events (see Kessler, 2000, for a review). For women, such stressful life events can be associated with marital and reproductive status (e.g., divorce, death of a spouse, birth, miscarriage). Women who assume a caretaker role for an ill spouse, parent, or child are also at higher risk for major depression (Kessler & McLeod, 1984; McCormick, 1995; Rosenthal, Sulman, & Marshall, 1993). However, many studies do not control for history of depression and inappropriately conclude that certain risk factors are associated with the onset of a depressive episode, when, in actuality, history of depression accounts for the association (Kessler, 2000, 2003). Studies that have examined gender differences in reporting symptoms conclude that reporting differences do not account for the higher rates of depression in women (see Kessler, 2000). As discussed later in this chapter, many theories (e.g., multiple roles theory) have been presented to explain why women are twice as likely as men to suffer from MDD. Additional attention to the convergence of biological and social determinants of depression onset is warranted (Kessler, 2003). Research is still needed to explore risk factors for the onset, chronicity, and relapse of depression to inform prevention and treatment interventions. Finally, the high prevalence of depression among women with specific physical illnesses highlights the importance of health psychologists routinely screening for depression, particularly among those diagnosed with the top five disease killers of women.

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Anxiety Disorders Anxiety disorders, characterized by panic attacks, worrying, and fear, are the most common of all mental disorders. A review of research from 1980 to 2004 found that anxiety disorders are generally twice as common among women as men (Somers, Goldner, Waraich, & Hsu, 2006). The NCSR estimates that the overall lifetime prevalence rate for anxiety disorders in the United States is 36.4% for women and 25.4% for men (National Comorbidity Study Replication, 2007); worldwide estimates have indicated lower lifetime prevalence rates of 18.5% for women and 10.4% for men. Although differences in measurement and sample characteristics have contributed to variability in findings across studies, patterns of higher prevalence among women for both 1-year and lifetime rates of anxiety disorders are generally consistent. Regarding specific anxiety disorders, worldwide best estimates of lifetime prevalence rates were 8.4% of women compared to 5.2% of men for generalized anxiety disorder (GAD), 1.6% of women compared to 0.76% of men for panic disorder, 4.2% of women compared to 1.7% of men for agoraphobia, 2.9% of women compared to 1.8% of men for social phobia, 8.2% of women compared to 3.5% of men for specific phobia, and 1.6% of women compared to 1.0% of men for obsessive-compulsive disorder (OCD) (Somers et al., 2006). Results from the NCS-R also indicated nearly triple the rate of posttraumatic stress disorder among women as compared to men, with lifetime prevalence rates of 9.7% compared to 3.6%, respectively (National Comorbidity Study Replication, 2007). In addition to being more prone to experience anxiety disorders, women are also more likely to have a comorbid anxiety condition or other psychiatric disorders. Pigott (1999) reported that women with panic disorder often have an additional diagnosis of GAD, simple phobia, or alcohol abuse. Similarly, anxiety disorders frequently are comorbid with depression (see Brown & Schulberg, 1997; Kaufman & Charney, 2000; Kessler et al., 2008). Comorbidity of anxiety with other psychiatric disorders varies between women and men, with women at particular risk for comborbid MDD or bulimia nervosa (BN) and at reduced risk for comorbid attention-deficit/hyperactivity disorder (ADHD), intermittent explosive disorder, and substance abuse. Women with anxiety disorders are also more likely than their anxious male counterparts to visit the emergency room, urgent care, or doctor in a given year (McLean, Asnaani, Litz, & Hofmann, 2011). Research has identified physical disorders that often mimic symptoms of anxiety, including cardiac, pulmonary, and gastrointestinal

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conditions (see Henry, 2000). Furthermore, anxiety, along with depression, plays important roles in cardiovascular events, placing women at particular risk for cardiovascular events given their increased likelihood of experiencing both depression and anxiety disorders (see Steiner, 2011). Additionally, individuals with cardiovascular disease (CVD) are at increased risk for anxiety disorders compared to those without CVD, with specific risks for GAD, panic disorder, and specific phobia (Goodwin, Davidson, & Keyes, 2009). Less attention has been given to the co-occurrence of anxiety and other physical illnesses. As with depression, theories have been postulated as to why women experience higher rates of anxiety disorders, and gender-specific risk factors have been suggested. Several explanatory theories have been supported in the literature (see McLean & Anderson, 2009). For instance, heritable vulnerability factors, such as neuroticism and other temperamental variables, as well as evolutionarily adaptive, gender-specific behaviors, such as worrying in order to protect against threat, may lead to gender differences in development of anxiety. Additionally, social-environmental factors, such as exposure to specific types of sexual trauma and social network crises, female-specific socialization promoting reduced perceptions of environmental control, and socialized coping behaviors, may moderate and increase vulnerability to anxiety. These findings indicate directions for genderappropriate prevention, intervention, and treatment strategies. Health psychologists also can assist with routine screening for anxiety in medical settings to provide insight into the comorbidity of anxiety with various physical illnesses. Eating Disorders This section addresses the three primary eating disorders of anorexia nervosa (AN), BN, and binge eating disorder (BED). It has been reported that females constitute more than 90% of reported AN and BN cases and are 1.5 times more likely than males to have binge eating patterns (American Psychiatric Association, 2000). Results from the NCS-R indicated that lifetime prevalence rates of eating disorders among women are approximately 0.9% for AN, 1.5% for BN, and 3.5% for BED (Hudson, Hiripi, Pope, & Kessler, 2007). The impact of eating disorders on women’s health includes both physical and psychological consequences. One of the most common physical consequences for women is primary or secondary amenorrhea (i.e., absence

of menstruation), which historically has been a core diagnostic requirement of AN in DSM-IV (American Psychiatric Association, 2000) and, while not historically required for a diagnosis of BN, has been reported in about half of bulimic women (Seidenfeld & Rickert, 2001). This hormone disturbance reduces, but does not eliminate, the chance for reproduction; however, there is fetal risk associated with pregnancy in the presence of AN (Goldbloom & Kennedy, 1995). Later in this chapter, we discuss the psychological impact of infertility on women; consequently, it is important to consider that women with eating disorders are disproportionately represented among fertility patients, and such eating disorders are rarely disclosed to treating physicians (Freizinger, Franko, Dacey, Okun, & Domar, 2010). Women with eating disorders are at increased risk for osteoporosis, including premenopausal osteoporosis (Goldbloom & Kennedy, 1995; Teng, 2011), and for developing stress fractures and other bone-related problems due to low bone-mineral density associated with amenorrhea (Putukian, 1994; Teng, 2011). Vomiting or purging, a frequent symptom of eating disorders, has been associated with various medical problems, including salivary gland hypotrophy (Mitchell, 1995) and electrolyte imbalance, with 50% of bulimic women experiencing electrolyte abnormality. Cardiovascular problems such as bradycardia and hypotension (Stewart, 1992), as well as cardiomyopathy (Mitchell, 1995), are common in AN and BN. It is equally important to examine the physical health problems associated with being obese, a common symptom in women with BED, as obesity has been associated with type 2 diabetes mellitus (noninsulin dependent), coronary artery disease, musculoskeletal pain and osteoarthritis, gynecologic and breast cancer risk, hypertension, stroke, cardiovascular disease, and gallbladder disease (Kulie et al., 2011; Pi-Sunyer, 1995; Pike & Striegel-Moore, 1997). Further, like underweight, overweight and obesity are associated with infertility and pregnancy complications, including anovulation, increased risk of miscarriage, preeclampsia, gestational diabetes, venous thromboembolism, emergency C-section, and lactation problems; additionally, fetal complications such as high birth weight, neonatal hypoglycemia, and congenital birth defects may also result (Jarvie & Ramsay, 2010; Metwally, Li, & Ledger, 2007; Yogev & Visser, 2009). Despite the risks of eating disorders during and after pregnancy, a survey by the American College of Obstetrics and Gynecology (ACOG) found that the majority of physicians treating pregnant women rated their training in diagnosing eating disorders as barely adequate, inadequate, or nonexistent

Women’s Health Psychology

(Leddy, Jones, Morgan, & Schulkin, 2009), underscoring the importance of multidisciplinary collaboration among health psychologists and physicians when treating pregnant women with eating disorders. Eating disorders have been linked to increased risk for comorbid psychological disorders. Pike and StriegelMoore (1997) suggest that depression in individuals with AN, BN, and BED occurs more commonly than in the general population. Approximately 42% of those with AN have a lifetime history of an affective disorder, as do approximately 70% of those with BN and 46% of those with BED (Hudson et al., 2007). Roughly a third to a half of those with eating disorders have a lifetime history of MDD, with the highest lifetime comorbidity found in individuals with BN (Hudson et al., 2007). History of comorbid affective disorders with eating disorders has been implicated in disproportionately high rates of postpartum depression, which was detected in 34.7% of women with eating disorders (Franko et al., 2001) and is 2.8 times more likely among women with BN than among case controls (Morgan, Lacey, & Chung, 2006). Anxiety disorders are found in 63.5% of those with eating disorders, with OCD disproportionately represented in this population (Kaye, Bulik, Thornton, Barbarich, & Masters, 2004). Women with eating disorders also commonly have substance use disorders and are at greater risk for illicit drug use problems, alcohol problems, and/or regular smoking among women with eating disorders compared to women without these pathologies (Baker, Mitchell, Neale, & Kendler, 2010). Eating disorders also have been linked to personality disorders (Cassin & von Ranson, 2005). Psychiatric comorbidities on Axes I and II have been associated with increased eating disorder symptom severity (Spindler & Milos, 2007). Eating disorders have a strong sociocultural component, as women face unique pressures to be thin, exacerbating the numerous detrimental effects on women’s physical and psychological health documented in this section. Substance Use Substance use is associated with a number of physical and mental health conditions and can have severe, detrimental consequences among women. This section briefly summarizes the impact of the most commonly utilized substances, nicotine and alcohol. Clinical health psychologists can play an important role in research and clinical efforts to better understand, prevent, and provide treatment for these risky lifestyle behaviors in hopes of reducing their global, public health impact.

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Cigarette Smoking Approximately 18% of women in the United States smoke cigarettes (Pleis, Ward, & Lucas, 2010). Cigarette smoking kills approximately 155,000 women each year because of resulting cardiovascular disease, cancer, and respiratory diseases, reflecting nearly 2.1 million years of potential life lost (CDC, 2008a). Cigarette smoking accounts for an estimated 85% of CHD deaths and 79% of COPD deaths among women age 45 to 49, and women may be more prone than men to lung injury as a consequence of smoking (CDC, 1997; Davis & Novotny, 1989; Varkey, 2004). Cigarette smoking is also associated with increased risk of stroke, infertility, pregnancy loss, preterm delivery, lowbirth-weight infants, and sudden infant death syndrome (SIDS; CDC, 2008c). Cigarette smoking among women typically starts in adolescence, with links to various risk factors such as peer pressure, depression, drug abuse, poor academic achievement, familial smoking behaviors, and the belief that smoking helps control weight gain (see Husten & Malarcher, 2000). Because smoking results in a variety of physical health problems and has been identified by the National Cancer Institute as the leading cause of preventable death in the United States (U.S. DHHS, 2007), prevention efforts should focus on educating women of all ages about the health consequences of smoking, especially in populations where prevalence rates are particularly high (e.g., among women who live below the poverty level; women who are divorced, separated, or widowed; and women who have less than 12 years of education (Adler & Coriell, 1997; CDC, 2008a). Alcohol A national study in the United States revealed that approximately 5 million women above the age of 18 met diagnostic criteria for alcohol abuse or dependence—with a significant majority of these women between the ages of 18 and 29 (Grant et al., 2004). Lifetime prevalence rates for alcohol abuse and/or dependence have been estimated at 19.5% for women compared to 42.0% for men (Hasin, Stinson, Ogburn, & Grant, 2007). Rates of alcohol disorders decrease with age, and Black women have lower rates across all age groups than other women. Trends in prevalence rates of alcohol dependence reflect a decrease among men between the early 1900s and the early 2000s, while prevalence rates among women have remained stable for alcohol dependence and have increased for alcohol abuse (Grant et al., 2004). Although fewer women than men abuse alcohol, mortality rates for women who abuse alcohol are higher than those of men who abuse alcohol and higher than among women in the general population

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(Greenfield, 1996). Risk factors for alcohol dependence vary over a woman’s life span and include, but are not limited to, family history of substance abuse, dysfunctional and unstable family environment, peer pressure, divorce, and retirement (see Stoffelmayr, Wadland, & Guthrie, 2000). Compared to men, women appear to have greater risk for alcohol problems related to negative mood states and sexual assault (Nolen-Hoeksema, 2004). Alcohol use itself is a risk factor for a variety of health problems, such as alcohol-related organ damage, adverse birth outcomes, and physical trauma related to motor vehicle accidents, as well as for social problems such as unprotected sex resulting in STD/HIV infection and unplanned pregnancies. Studies have demonstrated gender differences in alcohol use responses. For example, due to physiological differences, alcohol consumption leads to higher blood alcohol levels in women than in men, resulting in women becoming more intoxicated than men given the same amount of alcohol (Nolen-Hoeksema, 2004). Also, women tend to abuse alcohol later in life than men, but women deteriorate more rapidly and develop alcoholrelated symptoms faster than men. This phenomenon, known as telescoping, is often associated with the development of liver, cardiovascular, and gastrointestinal diseases (Lex, 1992). Compared to men, women develop alcohol-related illnesses at lower doses and are at greater risk for alcohol-induced motor and cognitive impairments (Nolen-Hoeksema, 2004). Furthermore, women who are heavy drinkers are more susceptible to depression (4 times more than men who are heavy drinkers), menstrual problems, infertility, and early menopause (see Stoffelmayr et al., 2000). Women’s drinking patterns can be influenced by their social relationships. For example, married women who abuse substances are more likely to have a spouse who abuses a substance than are married men who abuse substances (Brown, Kokin, Seraganian, & Shields, 1995). Research efforts should continue to explore gender differences in etiology (particularly related to psychosocial factors), risk and protective factors, treatment outcomes, and prevention programs. Issues Relevant to Treatment of Psychiatric Diagnoses Although women are more likely than men to suffer from depressive, anxiety, and eating disorders, most do not seek treatment. Women perceive greater need for and more often seek treatment for mental disorders than men (Mojtabai, Olfson, & Mechanic, 2002), yet only a third to a fourth of women with depression actually seek professional help

or treatment (Kessler, 2000). Women are also unlikely to pursue treatment for a substance abuse or alcohol use disorder and receive less alcohol- or substance-related care than men (Cohen, Feinn, Arias, & Kranzler, 2007; Westermeyer & Boedicker, 2000). When women do seek help, it is usually from their primary care physicians rather than from a mental health specialist (Glied, 1997; Narrow, Regier, Rae, Manderscheid, & Locke, 1993). Primary care physicians typically provide pharmacological treatment for affective disorders (e.g., antidepressants) and report limited abilities to diagnose and treat mental health problems (Westheimer, Steinley-Bumgarner, & Brownson, 2008). Therefore, for the interdisciplinary intervention needed to treat such mental disorders, it is important for clinical health psychologists to have a presence in primary care settings—either as a referral resource for adjunctive psychotherapy or as part of a multidisciplinary treatment team within the primary care setting. Treatment outcomes are likely to be enhanced when multidisciplinary treatment providers (e.g., physicians, mental health-care providers) communicate and coordinate their efforts. Moreover, interdisciplinary treatment that incorporates a biopsychosocial approach can facilitate adherence to antidepressant medication protocols, improve satisfaction with care, and help offset medical costs (Katon, 1995). Although women commonly receive psychotropic medications, research has not investigated the interaction between such medications and a woman’s menstrual cycle, even though menstrual cycle, pregnancy, and the postpartum period can influence the course of mood and anxiety disorders (Leibenluft, 1999). Moreover, drug and treatment trials were researched primarily on men. This has left many questions of how medications interact with female hormones, which appear to exert differential impact on the pharmacokinetics and pharmacodynamics of antidepressants (Grigoriadis & Robinson, 2007). Citing the fact that effectiveness of some antidepressants can vary over the course of a woman’s menstrual cycle, the American Medical Association (1991) cautions that antidepressants may work differently for women than for men. Women may also experience side effects differently than men. Women may have higher exposure to antidepressants than men given identical dosing, which may produce differential treatment response and increase adverse effects (Kokras, Dalla, & Papadopoulou-Daifoti, 2011). Additionally, women are less likely to tolerate the side effects of weight gain or drowsiness and often stop treatment when these side effects occur (Kessler, 2000). Medical research should continue to investigate the interaction of psychotropic medications with the menstrual cycle, pregnancy, and lactation, as well

Women’s Health Psychology

as identify side effects specific to women so that treatment barriers can be addressed.

STRESSFUL REPRODUCTIVE HEALTH ISSUES Our culture typically associates pregnancy and childbirth with positive emotions and with motherhood; however, this is not the case for all pregnancies or for all women. This section addresses a different aspect of these reproductive events, specifically focusing on some stressful conditions related to childbearing (also see Spiers, Geller, & Kloss [in press] for additional material relevant to women’s reproductive health). Whereas postpartum depression has received a great deal of attention in the literature, other postpartum reactions have received less, and psychosocial factors related to such phenomena as infertility and miscarriage have received even less. Postpartum Reactions Although the frequency of many psychiatric disorders is increased in the perinatal period, three puerperal conditions—postpartum dysphoria, depression, and psychosis—have been described most commonly, with the increased onset most evident within 30 days following childbirth (e.g., Austin et al., 2010; O’Hara & Swain, 1996). Postpartum dysphoria, which has also been referred to as baby blues or postpartum blues, is a mild and transient condition involving tearfulness and depressed mood that peaks at about the fifth day postpartum and, in large part, has been attributed to normal hormonal fluctuations following childbirth (O’Hara, Schlechte, Lewis, & Varner, 1991; Wisner, Parry, & Piontek, 2002). Postpartum dysphoria appears to be independent of specific sociocultural or environmental factors and consistent across cultures (Henshaw, 2003; Kumar, 1994). Estimates suggest that 26 to 85% of all mothers experience postpartum blues, the wide range due to differing assessment techniques across studies (Austin et al., 2010; O’Hara et al., 1991). Postpartum dysphoria, which usually resolves within 10 to 14 days without treatment (Altshuler, Hendrick, & Cohen, 2000), has yet to be established as an entity clearly distinct from normal experience, although severe symptoms may increase risk for postnatal psychiatric disorders (Henshaw, Foreman, & Cox, 2004). Postpartum depression is more severe and persistent than postpartum dysphoria, with symptoms resembling those of other forms of major depressive disorder, although there may be a greater frequency of anxiety, somatic

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complaints, and sleep disturbances (Yonkers, Vigod, & Ross, 2011). This condition occurs in 10 to 16% of women in the first 6 months after they have given birth, with onset usually within 2 weeks of childbirth (Austin et al., 2010; O’Hara & Swain, 1996). Community-based surveys—many of which used the Edinburgh Postnatal Depression Scale—indicate that rates of postnatal depression seem to be relatively consistent across countries, although estimates tended to vary when other assessment tools were employed and depending on how the time frame of the postpartum period was defined (see Lee, 1998). Higher incidence rates may be found in economically disadvantaged women (Gaynes et al., 2005). In addition to significant physiological changes following delivery, major adjustment is required because of changing social and personal circumstances, especially with the birth of the first child. Although psychosocial stressors and hormonal shifts have been suspected of playing a role in the development of postnatal depression, prior psychiatric history is a significant and well-documented risk factor: 20 to 30% of women with a history of major depression prior to conception develop postpartum depression, and a prior episode of postnatal depression or depression during a previous pregnancy increases a women’s risk following subsequent pregnancies by approximately 50 to 62% (O’Hara & Swain, 1996; Viguera et al., 2011). Recognition of the consequences of antenatal depression is growing. During pregnancy, 8.5 to 11% of women meet the diagnostic criteria for major or minor depression, which is not substantially different from same-age non-childbearing women (Evans, Heron, Francomb, Oke & Golding, 2001; Gaynes et al., 2005; Koleva et al., 2011). The prevalence of severe major depression appears lower during pregnancy than in the postnatal period (Jones & Cantwell, 2010); however, for women with personal and family histories of mood disorders, pregnancy represents a time of increased risk (e.g., Jones & Craddock, 2001; Marcus, Flynn, Blow, & Barry, 2005; Viguera et al., 2011), particularly for those who discontinue antidepressant medication due to pregnancy (Cohen et al., 2006). Psychosocial factors implicated include life events (e.g., marital discord), limited social support of an appropriate nature, and personality factors (O’Hara & Swain, 1996; Robertson, Grace, Wallington, & Stewart, 2004). Unrealistic societal stereotypes that bias women to expect that motherhood and maternal–infant bonding come immediately and easily and are natural phenomena that are always positive and fulfilling also may have implications for perinatal depression (Kumar, 1994; Lee, 1998). It often co-occurs with depressive conditions, and

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there is a growing body of literature reporting increased onset and/or exacerbation of anxiety symptoms and disorders, such as panic disorder and obsessive-compulsive disorder, throughout the perinatal period (e.g., Austin et al., 2010; Ross & McLean, 2006; Wenzel, Haugen, Jackson, & Brendle, 2005). The most severe, albeit rare, of the three postpartum conditions is postpartum psychosis, which occurs in one to two of every 1,000 deliveries and across all societies as far back as 150 years (Kendell, Chalmers, & Platz, 1987; Kumar, 1994; Yonkers, et al., 2011). Symptoms are similar to those of schizophrenia, but the content of hallucinations and delusions often involves themes associated with pregnancy, childbirth, or the infant, and suicidal and infanticidal ideation can be present; homicidality is rare. Symptoms similar to an organic brain syndrome (e.g., confusion, attentional deficits, clouding of the senses) have also been noted (Sit et al., 2011). More than 50% of women with this disorder also meet criteria for postpartum depression (Kendell et al., 1987). The primary risk factors include a family history and particularly a personal history of psychiatric illness (e.g., bipolar disorder), with women who experience postpartum psychosis at elevated risk for later episodes. As with other conditions, it appears that a dynamic diathesis (biological predisposition) stress (childbirth) model may best explain postpartum psychosis at this point, because research generally has not confirmed an association between this disorder and purely biological factors or social factors (e.g., prior life events, social support, or marital discord; see Lee, 1998). Although the onset of postpartum psychosis ordinarily is rapid, occurring in the first 48 to 72 hours to 2 weeks postdelivery, risk remains high for several months (Kendell et al., 1987); therefore, women with a psychiatric history should be monitored closely. The prognosis for postpartum psychosis is much more positive than for other psychotic disorders, yet the experience, which often requires inpatient psychiatric treatment, can be devastating for women and their families. Perinatal psychiatric disorders and resulting mother– infant bonding problems in the postpartum period have consequences not only for the woman but also for the developing child in terms of cognitive deficits and emotional and behavioral disturbances (e.g., Murray & Cooper, 1997; O’Connor, Heron, Golding, Beveridge, & Glover, 2002; West & Newman, 2003), as well as eating or sleeping difficulties (Righetti-Veltema, Conne-Perr´eard, Bousquet, & Manzano, 2002; Swanson, Flynn, Wilburn, Marcus, & Armitage, 2010), for example. Relative to women without mental health complications, those experiencing postnatal

mood and/or anxiety symptoms are less likely to initiate and more likely to stop breastfeeding early in infancy (Field, Hernandez-Reif, & Feijo, 2002; Watkins, MeltzerBrody, Zolnoun, & Steube, 2011), more likely to delay or not vaccinate their infants (Turner, Boyle & O’Rourke, 2003), and more likely to miss outpatient pediatrician visits and require acute outpatient or emergency room care (Flynn, Davis, Marcus, Cunningham, & Blow, 2004). Women and health-care providers face challenging decisions about how to best manage or prevent recurrences of these perinatal conditions (Yonkers et al., 2011). Prevention efforts are needed not only to educate those women with a history of depression and anxiety about postnatal reactions and possible consequences so that support and coping strategies can be enhanced and activated, ideally prior to birth, but also to encourage women to adopt more realistic expectations about pregnancy, motherhood, and infant–mother attachment. The provision of early psychoeducation and screening and the development of antenatal and postnatal treatment plans may reduce the public health burden and cost associated with postnatal depressive symptoms. For all the postpartum reactions discussed, health psychologists and other care providers can play a vital role in helping women and their families adjust and focus on their strengths and resources to facilitate adaptation at a time when childbirth is followed by unanticipated symptoms and stressors. Infertility Infertility, defined by the WHO as the inability to conceive a pregnancy after 1 year of unprotected coitus, has been termed a “crisis” of our time (Cooper-Hilbert, 1998). Within the world population, 72.4 million individuals have infertility, and approximately 40 million are expected to seek medical care related to their fertility. Worldwide estimates suggest that infertility rates vary substantially by region, with rates ranging from 3.5 to 16.7% of couples in more developed countries (median: 9%), and rates ranging from 6.9 to 9.3% in less developed countries (Boivin, Bunting, Collins, & Nygren, 2007). In the United States, infertility rates have generally decreased since mid-20thcentury estimates, with national data indicating that 7.4% of women had past-year infertility in 2002, decreased from 11.2% in 1965 and 8.5% in 1982 (Chandra, Martinez, Mosher, Abma, & Jones, 2005). It has been speculated that declines may be driven by improved treatments for diseases associated with infertility, such as gonorrhea, as well as increased availability of assisted reproductive technologies (ART) to aid in pregnancy (Stephen & Chandra,

Women’s Health Psychology

2006). Likelihood of infertility increases with age, particularly among women over the age of 35 (Chandra et al., 2005). Although a single cause of infertility is rarely found, 35 to 40% of infertility cases can be attributed to male factors (e.g., abnormal sperm count or mobility, hormonal imbalances, injury to reproductive organs, retrograde ejaculation, testicular failure, use of certain drugs, varicose veins in the scrotum), 35 to 40% to female factors (e.g., aging or depleted oocyte reserve, anovulation, cervical problems, endocrine disorders, endometriosis, intrauterine device use, structural abnormalities), and 20% to factors from both members of the couple (CooperHilbert, 1998; see review in Goldman, Missmer, & Barbier, 2000). The experience of infertility can result in a variety of psychosocial issues relevant to the work of health psychologists. When surveyed, 96% of young women reported intentions to have children in their lifetimes (Lampic, Svanberg, Karlstrom, & Tyden, 2006). When confronted with infertility, women often experience myriad affective responses, such as initial shock and denial, disappointment, and anger (at themselves, their partners, and other women with children, for example); helplessness and perceived loss of control; and guilt or self-blame—particularly those who believe their infertility problems may be due to past behaviors such as contraceptive choice, induced abortions, or STDs (Cooper-Hilbert, 1998; Downey & McKinney, 1992). Infertility is associated with anxiety symptomatology and GAD, probably due to uncertainty regarding fertility status or treatment outcomes (King, 2003). Differences in psychiatric morbidity have been detected between women with and without infertility. Downey and McKinney (1992) found that 11% of infertile women met criteria for major depression relative to 4% of a fertile population. Significantly more infertile women were diagnosed with BED and adjustment disorder with mixed anxiety and depression, detected before initiating any fertility treatments (Sbaragli et al., 2008). Findings from other studies of psychological adjustment among women with infertility were mixed, with many finding this population to be psychologically well adjusted when entering treatment but experiencing significant depression during and after treatment (for a review, see Eugster & Vingerhoets, 1999). Reactions to infertility vary by gender (Greil, 1997), with women’s sense of self-identity more deeply affected than men’s because of socialized pressures (Whiteford & Gonzalez, 1995). Women presenting for fertility treatment report significantly more distress, including depression, state anxiety, infertility-related distress, and general stress, than their male counterparts, with particularly meaningful

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effect sizes for infertility-specific distress (Wichman, Ehlers, Wichman, Weaver, & Coddington, 2011). Violating societal norms and expectations regarding motherhood as a primary adult role has both social and personal consequences, such as stigmatizing social definitions of childless women as selfish, unfeminine, unnatural, and inadequate—ideas that many women incorporate into their own self-schema (Lee, 1998; Whiteford & Gonzalez, 1995). Perceived stigma is directly related to stress, and negative effects of stigma on perceived social support mediate the indirect relationships between stress and anxiety and depressive symptomatology (Slade, O’Neill, Simpson, & Lashen, 2007). Potentially fertile women pursuing motherhood in unconventional relationships, such as lesbian women or women without partners, are often subjected to similar social stigma and may be viewed as deviant (Lee, 1998). Although visits to all physicians for fertility-related concerns have increased as information and treatment options have improved, not all couples seek medical advice or treatment, with 42 to 76.3% of infertile women in more developed countries (mean of 56.1%) and 27 to 74.1% of women in less developed countries (mean of 51.2%) seeking any medical care related to fertility (Boivin et al., 2007). Currently, infertility intervention options include hormones, artificial insemination, a range of variations on in vitro fertilization (IVF), and gamete donation. Older women, White women, women of higher SES, and women with higher education levels are more likely to seek treatment (Chandra et al., 2005; Hirsch & Mosher, 1987). Attrition without a successful outcome occurs with approximately half of women undergoing ART treatment within three cycles for reasons other than financial or prognostic barriers; most commonly, women attribute attrition to emotional distress and difficulty coping (Olivius, Friden, Borg, & Bergh, 2004). Additional barriers may include high cost of treatment and lack of insurance coverage, as well as culturespecific concerns, including spiritual beliefs, mistrust of the health-care system and problematic relationships with health-care providers, and reluctance to use technologies to address holistic problems (White, McQuillan, & Greil, 2006). Psychiatric barriers, such as depression, have also been implicated (e.g., Herbert, Lucke, & Dobson, 2010). Further research addressing factors associated with access to fertility treatment is needed. As both infertility and its treatments may proceed for an indeterminate amount of time, impose pressure and stress, and challenge a couple’s coping resources, interpersonal relationships and overall quality of life can be affected. There also may be physical pain and other health

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risks associated with the often intrusive reproductive procedures. Each time a woman does not conceive or cannot carry the fetus to term following treatment, couples must confront possible distress, grief, and despair related to multiple losses and a sense of failure (Greil, 1997). Financial hardships may be incurred by the high cost of ongoing treatment. Given the strong stigma associated with childlessness, many women continue to endure intense treatments despite continued failure to be absolutely certain that they have exhausted all possible options to achieve biological parenthood. Women such as these report relief when they finally stop treatment (Lee, 1998). Psychological interventions for women with infertility may involve skills for coping, stress management, and couples communication, which can mitigate or improve negative psychological sequelae during fertility treatment (Boivin, 2003). For many women, psychological treatment subsequent to pursuit of infertility treatments ultimately may involve efforts to promote acceptance of their infertility and exploration of alternatives to childbirth (e.g., surrogate motherhood, adoption, remaining childless). However, these options bring their own unique set of challenges, stressors, and stigmata. It is vital for medical and mental health providers to recognize and appreciate the enduring and pervasive consequences of infertility for those who remain childless by chance as opposed to choice (Cooper-Hilbert, 1998; Lee, 1998). Such consequences include depression, anxiety, and complicated grief, conditions that warrant continued clinical attention after couples have terminated fertility treatment (Lechner, Bolman, & van Dalen, 2007). To understand the nature of these reactions and psychosocial consequences, there is a great need for further research—especially research employing appropriate comparison groups. Miscarriage Miscarriage involves the spontaneous death of a fetus prior to 20 completed weeks of gestation. Occurring in approximately 15% of clinically recognized pregnancies, risk for miscarriage varies substantially by age (e.g., 9% for women age 20 to 24 years but 75% for women over age 45; Nybo Andersen, Wohlfahrt, Christens, Olsen, & Melbye, 2000). Stillbirth, defined as late fetal death during the second half of pregnancy, occurs in approximately 1% of singleton pregnancies, with higher risk in multiple pregnancies. Overall, Black women have a 2.2-fold increased risk of stillbirth relative to White women, with factors contributing to risk varying by race and gestational age (Willinger, Ko, & Reddy, 2009). Risk factors established or

suspected in one or more studies can be broadly classified as environmental (e.g., nicotine and other drug use; toxins; electromagnetic fields; stressful life events) or biological (e.g., genetic, including chromosomal abnormalities; endocrinologic; anatomic; immunologic; microbiologic; see Klier, Geller, & Ritsher, 2002, for a brief review). For many women, miscarriage constitutes an unanticipated, traumatic experience that can be associated with considerable physical pain and discomfort and may pose a serious threat to the life of the woman (Saraiya et al., 1999). Physiologically, miscarriage marks the end of a pregnancy, and psychologically, it may produce fears and doubts about procreative competence. Psychological reactions to reproductive loss vary but often include sadness, distress, grief, guilt, and fear (e.g., Borg & Lasker, 1981; Toedter, Lasker, & Janssen, 2001). At the same time, societal recognition of miscarriage as a valid loss to be mourned and one that may result in significant psychological symptoms is limited, which may contribute to social isolation and further distress. Early pregnancy loss can be minimized or not acknowledged by important others, including family members and friends, who may be uncomfortable talking about death, for example. Even medical providers may not legitimize the loss experience and may not be prepared to provide the needed support, information, or referrals; they may be pressured for time and not evaluate or appreciate a woman’s individual psychological responses because of the frequency with which they encounter miscarriage or because of perceptions that miscarriage is of lesser significance relative to later perinatal loss, which can contribute to women’s dissatisfaction with afterloss care (Geller, Psaros, & Kornfield, 2010). Studies investigating psychological morbidity in the aftermath of loss are increasing, although those employing appropriate comparison groups remain more limited (Klier et al., 2002). Research that includes comparison groups has established that miscarriage is a risk factor for depressive reactions ranging from depressive symptoms (e.g., Janssen, Cuisinier, Hoogduin, & De Graauw, 1996; Neugebauer et al., 1992; Thapar & Thapar, 1992) to minor and major depressive disorder (e.g., Klier, Geller, & Neugebauer, 2000; Neugebauer et al., 1997). Specifically, miscarrying women’s risk for an episode of minor depression in the 6 months after loss is 5.2-fold and for major depression, 2.5-fold, that of otherwise comparable community women. History of major depression is a risk factor for a recurrent episode, but length of gestation at time of loss or attitude toward the pregnancy does not seem to play a role (Klier et al., 2000; Neugebauer et al., 1997).

Women’s Health Psychology

Geller, Kerns, and Klier (2004) reviewed the existing literature on anxiety following miscarriage and the subsequent pregnancy. Studies that investigated the development of anxiety symptoms following loss found mixed results, although those with comparison groups suggest that anxiety levels may be substantial after miscarriage (e.g., Beutel, Deckardt, von Rad, & Weiner, 1995; Lee & Slade, 1996; Thapar & Thapar, 1992). In a study of anxiety disorders that employed a cohort design, Geller, Klier, and Neugebauer (2001) reported that miscarriage increases risk for a recurrent episode of OCD but not panic disorder or specific phobia. Risk for posttraumatic stress disorder (PTSD) also may be increased following reproductive loss (Engelhard, van den Hout, & Arntz, 2001). Validation of the loss as real and having their grief acknowledged as legitimate, discussion with a medical provider regarding expected physiological changes, the cause of miscarriage (if known), and implications for future reproductive plans, as well as specific evaluation of psychological symptoms and functioning and referrals to mental health providers when appropriate, may help offset more enduring psychological and psychiatric consequences of the loss and during pregnancies subsequent to a miscarriage. It is important to attend to not only the psychological sequelae of miscarriage in women but also to psychosocial factors, such as women’s relationships with their partners and children, as well as attachment to future children (Hughes, Turton, Hopper, McGauley, & Fonagy, 2001; Klier et al., 2002). In addition, because miscarriage involves a loss that often remains unknown to all but a woman’s most intimate confidants and her medical providers, the grieving process may be compounded by limited social support and the challenge of managing feelings associated with the loss of a potential child. After multiple miscarriages, women may decide to undergo evaluation and treatment for secondary infertility, which, as discussed previously, may challenge coping resources to an even further degree. Internet resources may provide needed information and be a source of potential support (Geller, Psaros, & Kerns, 2006; Gold, Boggs, Mugisha, & Palladino, 2012). There is a need for the development and evaluation of postloss mental health screening methods and intervention (e.g., Neugebauer et al., 2006), as well as for studies investigating ethnic-racial and cultural differences in coping and the role of factors such as religion and spirituality (e.g., Mann, McKeown, Bacon, Vesselinov, & Bush, 2008). Additional research on factors that might confer increased risk for psychological morbidity also is warranted.

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HEALTH CARE Women are major consumers of the health-care industry in a variety of ways, and often they are the primary decision makers regarding health care and health insurance for their families (Wyn, Ojeda, Ranji & Salganicoff, 2003). In addition, women make more than 61% of visits to physicians, purchase 59% of prescription drugs, and comprise 75% of nursing home residents over the age of 75. Moreover, women have reported significantly lower health status than men and had higher expenditures for primary care, specialty care, emergency care, and diagnostic services (Bertakis, Azari, Helms, Callahan, & Robbins, 2000). Women typically visit their doctors on a regular basis and use preventive services twice as much as men, but, unfortunately, women spend more money outof-pocket for needed medical care (Commonwealth Fund, 1994). Owens (2008) commented that the predominance of women’s utilization of health care is especially pronounced among older adults, with 50% more health-care expenditures incurred by postmenopausal women than by their male counterparts, suggesting a need for improvements in current preventive services for this specific population to reduce disease impact and help to reduce overall health-care expenditures. Health Insurance Managed care is a significant source of women’s health care. Women usually have some type of insurance coverage; however, they are more likely to be covered by public insurance, specifically Medicaid, with women representing 75% of Medicaid recipients. Nearly 20% of women in the United States are uninsured, and women are more often covered as dependents than men, placing them at greater risk for losing coverage due to divorce or widowhood, spousal job loss, or changes in family plan coverage (Kaiser Family Foundation, 2010). Women are also substantially more likely than men to have minimal or no coverage because they represent the majority of parttime and service employees (Commonwealth Fund, 1994). Women of color, particularly Hispanics, and women with low incomes have the highest risk of being uninsured. Women without health insurance go without needed medical care, including vital preventive services such as Pap smears, and are less likely to have a regular doctor (Kaiser Family Foundation, 2010). Insurance also influences use of various health-care services and treatment options. For example, women in HMOs are more likely to receive medications than psychotherapy than women with

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fee-for-service payment plans (Glied, 1997). Furthermore, women without insurance are significantly less likely than women with private or public insurance to utilize health services, including ambulatory care, prescription drugs, and preventive health services (Taylor, Larson, & Correade-Araujo, 2006). The lack of health-care coverage also may help explain why many diseases go undetected in women. Relationships With Health-Care Providers Women frequently receive services from multiple physicians because reproductive services are traditionally isolated from other health services (Clancy, 2000). As a result, many women have difficulty navigating the healthcare system to receive appropriate medical care. According to the Office on Women’s Health [OWH], research indicates that women are often unsatisfied with their health-care provider or the level of communication with their provider, and several studies have indicated that health- care providers treat women differently from men. They also noted: “Health providers may give women less thorough evaluations, minimize their symptoms, provide fewer interventions, and give less explanations in response to questions” (OWH, 2000). Studies indicate that the use of preventive care services is related to the age and sex of the physician, with younger physicians and female physicians more likely to provide preventive services (Clancy, 2000). More specifically, female physicians are more likely to provide Pap smears and recommend mammography to their patients than male physicians (Franks & Clancy, 1993; Lurie et al., 1993). Female physicians are more likely to screen for prenatal substance abuse and to ask pregnant women about stress, mental health concerns, and sexual abuse than male physicians and are more likely to believe that such practices can influence behavior change (Oser, Biebel, Harris, Klein, & Leukefeld, 2011). Lurie, Margolis, McGovern, Mink, and Slater (1997) surveyed physicians and patients to see why higher rates of breast and cervical cancer screening occur among female physicians. The results indicated that women prefer female physicians and that female physicians spend more time per visit and are more concerned about prevention issues (e.g., smoking, sexual practices, seat belt use, and cancer screening) than male physicians. Furthermore, female physicians reported feeling more comfortable performing breast exams and Pap smears, as well as taking a sexual history from women. These findings were echoed by Bertakis, Franks, and Azari

(2003), who reported that female primary care providers spent a greater proportion of the medical visit attending to preventive services and counseling than their male colleagues and that patients of female physicians reported greater satisfaction with their medical care. Studies have also revealed that male and female physicians communicate differently with patients. Overall, data consistently indicate that female physicians engage in more patient-centered communication than male physicians (Hall, Irish, Roter, Ehrlich, & Miller, 1994; Roter, Lipkin, & Korsgaard, 1991). Roter, Hall, and Aoki (2002) meta-analyzed 26 studies of gender associations with physician behavior and reported that female physicians engaged in significantly more active facilitation of partnership, positive talk, emotionally focused talk, and psychosocial information giving. An exception was noted in obstetrics and gynecology, where no gender differences were found, perhaps due to physicians’ need to modify their interpersonal styles to better suit the needs of their female patients. Additionally, in an analysis of patientcentered communication, female physicians were found to engage in more exploration of patients’ disease and illness experiences (Bertakis, Franks, & Epstein, 2009). Understanding of the whole patient by female physicians was higher rated in gender-concordant than gender-discordant physician–patient relationships, perhaps reflecting some discomfort in relationships between female physicians and male patients. Pooled data also indicated that female physicians spend approximately 10% longer in patient visits than male physicians (Roter et al., 2002). Research suggests that insufficient time spent providing health checks, medical information, and supportive counseling affects women’s satisfaction with medical and/or emotional aspects of care (e.g., Hildingsson & R˚adestad, 2005), underscoring the importance of these differences in patient care styles. Furthermore, Hou and Shim (2010) reported that patients with lower perceptions of patientcentered communication with health care providers were more likely to utilize the Internet for health-related purposes, which carries notable concerns as described elsewhere in this chapter. In summary, women are the primary consumers of the health-care industry yet often are underinsured and unsatisfied with their health-care relationships. These issues can affect women’s mortality and morbidity in numerous ways (e.g., underutilization of preventive and medical services, inadequate communication with health-care providers, and limited availability of treatment options). As a result, efforts should be made to ensure that women have adequate access to high-quality health care, and health

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providers should be educated about communication strategies when interacting with female patients.

psychological consequences of advancing medical technologies are warranted.

Advanced Medical Technology and Decision Making

Internet-Mediated Support and Health Information Seeking

Technological advances in recent decades present increasingly more options for medical patients, which are particularly relevant to women, given their prominent positions as health-care decision makers and consumers. In managing their own health, women are faced with myriad choices for health screening, preventive care, and medical intervention. For example, technological advances have made it possible to detect genes implicated in susceptibility to breast and ovarian cancers (i.e., BRCA1 and BRCA2), presenting women with the potential choice to pursue testing and subsequent intervention, such as chemoprevention or elective surgical removal of the breasts, ovaries, and fallopian tubes (McClain, Palomaki, Bradley, & Coates, 2003). With many evolving technologies, questions regarding short- and long-term risks and benefits, both medically and psychologically, remain unanswered. Technological advances in prevention and intervention may challenge patients’ spiritual and moral values, as well as precipitate anxiety and uncertainty regarding options and outcomes. For instance, prenatal screening with amniocentesis and chorionic villus sampling that enable early detection of genetic and/or chromosomal defects is universally recommended by the American Academy of Obstetrics and Gynecology (ACOG). However, these options may foster emotional distress in expectant mothers, with research suggesting that decision making regarding prenatal screening is associated with anxiety, stress, and fear, with perceptions of risk related to gaining knowledge about fetal development, consequent distress and decision making following positive results, and fear of tests failing to accurately detect an existing fetal abnormality (Kowalcek, Lammers, Brunk, Bieniakiewicz, & Gembruch, 2002; Liamputtong, Halliday, Warren, Watson, & Bell, 2003). Similarly challenging decisions are encountered in numerous medical contexts, indicating a need for further research to examine associated psychological processes and consequences in a landscape shaped by increasingly sophisticated and plentiful options. As technological advances such as these are introduced, the complexity and significance of women’s relationships with the health-care system and health-care providers are underscored. Women may turn to emerging communication resources, such as the Internet, to access information and find support for underrecognized psychological distress. Awareness of and increased attention to the

In recent years, the Internet has emerged as a resource for health information seeking and support, with a national survey indicating that more than half of individuals reported past-year use of the Internet for health-related purposes (Ybarra & Suman, 2006). Among medical populations, utilization appears to be even higher, with evidence that nearly 70% of lung cancer patients engage in health-related Internet use, and 84% of fertility patients have searched for medical information online (Huang, Al-Fozan, Tan, & Tulandi, 2003; Quin, Stams, Phelps, Boley, & Hazelrigg, 2010). Women more commonly engage in Internet use for health purposes than men (Ybarra & Suman, 2006). Given these patterns, attention should be paid to trends and development of these resources to assess their utility, functionality, and impact. Internet resources present opportunities for informational, social, and emotional support in many formats, including informational web sites and interactive communication forums (see White & Dorman, 2001). For individuals seeking health-related support, the unique features of the Internet offer the potential for simultaneous engagement in psychoeducation, bibliotherapy, written emotional expression, and group-based formal and informal communication and social support. Specific features distinguish computer-mediated support from face-to-face support resources, such as constant availability and convenient access to similar others from the privacy of one’s own home, as well as anonymous and passive engagement in support activities, controlled self-presentation, and neutralization of social structures compared to face-toface interaction (Barak, Boniel-Nissim, & Suler, 2008; Malik & Coulson, 2008; White & Dorman, 2001; Wright & Bell, 2003). Geller, Psaros, and Kerns (2006) suggested that provision of reputable Internet resources to women suffering perinatal loss may help promote discussion between patients and health-care providers, enhance adjunctive follow-up care, and provide vehicles for ongoing support for women. Emerging technology also holds promise for remote treatment with this population (see Geller, 2012). Little quantitative research exists regarding outcomes of health-related Internet use, although evidence points to several positive psychosocial correlates. For example, a study of individuals with spinal cord injuries found

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that frequency of Internet use was associated with several indicators of health-related quality of life, including social integration, occupation with goal-directed activities, perceived health status, and health compared to the previous year (Drainoni et al., 2004). Additionally, others have identified several empowering mechanisms of computer-mediated support for health problems, including encountering emotional support, finding recognition and understanding, exchanging information, and helping others. These empowering mechanisms were found to predict several outcomes of empowerment, including being better informed and enhanced social well-being (van Uden-Kraan, Drossaert, Taal, Seydel, & van de Laar, 2009; van Uden-Kraan et al., 2008). Users of computermediated support have also reported improvements in health behaviors, understanding of health issues, healthrelated decision making, and partner relationship quality (Baker, Wagner, Singer, & Bundorf, 2003; Haagen et al., 2003; Weissman, Gotlieb, Ward, Greenblatt, & Casper, 2000; Ybarra & Suman, 2006). However, several concerns about health-related Internet use have emerged. For instance, the vast selection of Internet resources has led to questions about their quality and accuracy (Silberg, Lundberg, & Musacchio, 1997). Quality standards have been proposed, emphasizing authorship, attribution, disclosure, and currency, yet adherence to such standards is poor. For example, an analysis of fertility-related web sites found that nearly 50% failed to adhere to any of these quality standards, and only 2% met all standards (Okamura, Bernstein, & Fidler, 2002). Others have also reported negative social interactions due to increased social disinhibition and anonymity (Malik & Coulson, 2008; White & Dorman, 2001; Wright & Bell, 2003). Additionally, the propensity to become addicted to Internet-based support, due to its constant and dynamic availability, has been noted among women with infertility (Malik & Coulson, 2008). Given the growing popularity of Internet-based health-related support and information, particularly among women, additional research is needed to understand this facet of health behavior and coping. Studies should continue to examine mechanisms of support and associated psychosocial and medical outcomes, as well as potential iatrogenic effects of engagement in computer-mediated support. SOCIAL AND CULTURAL INFLUENCES ON WOMEN’S HEALTH Earlier in this chapter, we discussed advances and shortcomings in the research and health care of women. It is

important that strides continue to be made to better understand how women’s expression of disease symptoms, potential warning signs, and risk factors for both psychological and physical disorders may differ from those documented by research conducted on men. It is now accepted that women’s health is influenced by both biological and social factors and that addressing issues of sociocultural relevance is critical in improving women’s health (WHO, 2009). In addition, it is necessary to consider women’s multiple contributions to their families, communities, and society and how these various roles that women assume affect their psychological and physical health. Therefore, it remains important that researchers and health-care professionals understand and appreciate women’s health on a sociocultural level. The focus of this section is to examine the influence of socioeconomic status, multiple roles, and gender socialization on the psychological and physical health of women. Socioeconomic Status and Women Socioeconomic status (SES) refers) to “an individual or group’s position within a hierarchical social structure, measured by variables including education, occupation, income, wealth and place of residence” (Adler & Rehkopf, 2008). The relationship between SES and health is quite relevant for women because 29.9% of female-headed households fell below the federal poverty level in 2009, according to the U.S. Census Bureau (DeNavas-Walt, Proctor, & Smith, 2010). Gender differences in SES can be largely explained from a social standpoint. Comparing median annual income, women earn 77.1% of what men earn, with women earning a median salary of $43,217 and men earning $56,053 (DeNavas-Walt et al., 2010). Such gender differences may be explained in large part by the fact that the majority of employed women continue to hold jobs in traditionally female occupations (e.g., 20.4% of employed females work in office and administrative support occupations, and 26.6% work in nonmanagement professional or related occupations), allowing little opportunity for career advancement that may lead to comparable salary increases (U.S. Department of Labor, 2009). In addition, women’s career advancement may be hindered by child rearing, as 55.7% of women with children under age 3 are employed, as compared to 91.4% of men with children under age 3 (U.S. Department of Labor, 2008). While gender alone places women at increased risk for poverty and, consequently, poor health, ethnicity also has an association with SES. Weekly salary differences according to ethnic-racial status indicate that Black women

Women’s Health Psychology

earn 86.9% of what White women earn and Hispanic women earn 76.1% of White women’s earnings (U.S. Department of Labor, 2009). Given that 29.9% of femaleheaded households are below the poverty level and that female-headed households are more likely to be run by Black or Hispanic women, minority women may be further at risk for poverty (Snyder, McLaughlin, & Findeis, 2006). Adler, Boyce, Chesney, Folkman, and Syme (1993) found a linear relationship between SES and health. Specifically, they reported that those in the highest SES bracket had the lowest morbidity and mortality rates, with these rates steadily increasing as SES level decreases (Adler & Coriell, 1997). Though this relationship has been well demonstrated, future research is needed to identify the mechanisms responsible for such health disparity according to SES (Adler & Newman, 2002). The following sections examine the association between SES and both physical and mental health. Physical Health and SES Research addressing the association between SES and health consistently finds the poor, unemployed, and poorly educated to have increased mortality and morbidity for the great majority of diseases and health conditions (Adler & Rehkopf, 2008; Illsley & Baker, 1991; Kennedy, Paeratakul, Ryan, & Bray, 2007). One explanation involves the link between poor health behaviors that may be risk factors for various physical illnesses and low SES (Adler et al., 1993). For example, in a review of specific health risks for women, Rimer, McBride, and Crump (2001) reported that approximately 25% of women currently smoke cigarettes, 20% have high cholesterol (greater than 240 mg/dl), 35% are obese, and 73% do not exercise regularly. Health problems and physical disease and illness can contribute to diminished SES, as women may need to reduce work hours or cease working entirely due to the demands of their illness or the severity of their physical symptoms (Adler & Rehkopf, 2008). Despite this evidence, it appears that although health status can affect SES, it is more likely that SES affects health in most cases (Adler & Rehkopf, 2008). One of the ways in which SES affects health is through the availability of resources, such as food, health care, and safe residences. Women from lower SES backgrounds may face a greater number of challenges in the pursuit of a healthy lifestyle. Some of the challenges associated with financial adversity and increased risk for physical health problems include limited access to or high cost of healthful foods (e.g., fresh fruits and vegetables), resulting in consumption of less expensive, high-fat foods that

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are low in nutritional value (Adler & Coriell, 1997); lack of, or inadequate, health insurance coverage that subsequently results in limited access to health-care services (Pleis, Ward & Lucas, 2010); and increased likelihood of residing in poorer neighborhoods, resulting in greater exposure to environmental stressors (e.g., violence, crime, pollution; Miller & Downs, 2000; Silbergeld, 2000). These challenges have implications for families because women traditionally are responsible for grocery shopping and food preparation, as well as for making health-care decisions and taking children to health-care appointments. With respect to the high percentage of impoverished households headed by females, it is important to address the influence of SES on the lifestyle and health of the entire family. SES also affects health through differential exposure to stress. Chronic stress can result from chaotic living environments, uncertain financial situations, interpersonal conflict, and unstable family life, all of which may be more prevalent in disadvantaged populations (Adler & Rehkopf, 2008). Therefore, repeated exposure to stress may produce adverse health outcomes (Thoits, 2010). Initial results have elucidated this potential relationship, but future research is needed to further evaluate the pathway between stress and physical health. Mental Health and SES Lower SES has been linked not only to physical health problems but also to increased rates of psychopathology and mental disorders. In a review of 20 prevalence studies, Neugebauer, Dohrenwend, and Dohrenwend (1980) found that 17 of these studies reported higher rates of psychopathology in the lowest socioeconomic class than in the highest class. These findings were supported by multiple studies using data from the Epidemiological Catchment Area (ECA) study (Holzer et al., 1986; Regier et al., 1993; Robins et al., 1991), as well as other smaller cohorts (Lorant et al., 2007). Regier and colleagues found individuals from the lowest SES level to have a 2.6 greater relative risk for overall psychopathology than those in the highest SES level in terms of 1-month prevalence rates. In comparing rates of specific disorders between the lowest and highest SES levels, there is an 8.1 greater risk for schizophrenia, 2.9 for obsessive-compulsive disorder, and 2.5 for alcoholism in those from lower SES levels, indicating significantly higher rates of overall psychopathology, as well as increased risk for specific psychological disorders, in low SES groups. In support of these results, Holzer and colleagues (1986) examined 6-month prevalence rates and found similar results, again revealing higher rates of

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psychological disorders in low compared to high socioeconomic levels. Concerning gender differences and psychopathology, women from lower SES backgrounds reported higher levels of depressive symptoms (Hirschfeld & Cross, 1982), with a review by Neugebauer and colleagues (1980) reporting an average female-to-male depression ratio of 3.0. In a population-based study by Williams and colleagues (2011), women in the lowest SES group were the most likely to exhibit a mood disorder. This suggests women are at increased risk for depression, with augmented risk for women from lower SES backgrounds. As discussed earlier, women also have increased rates of anxiety disorders relative to men (Kessler et al., 1994; Kessler, Sonnega, Bromet, Hughes, & Nelson, 1995; Neugebauer et al., 1980). In summary, the results of these epidemiological studies suggest that women and individuals from low SES backgrounds are at increased risk for major depression, anxiety, and other psychiatric disorders (Ansseau et al., 2008; Kohn, Dohrenwend, & Mirotznik, 1998). In addition to SES affecting mental health outcomes, other psychological and psychosocial variables have been investigated in terms of their relationship to physical health outcomes in women, illustrating that psychological influences may be paramount. Research has addressed the impact of social support, self-esteem, spirituality, and mastery as potential protective factors for physical health (Powell, Shahabi, & Thoresen, 2003; Thoits, 2010), while negative emotions and cognitions, resource appraisal, and psychological stress and distress may be deleterious for physical health (Gallo & Matthews, 2003; Matthews & Gallo, 2011; Matthews, Gallo, & Taylor, 2010). This represents a burgeoning area of research that warrants future investigation to determine potential mediators and possible targets for intervention.

Multiple Roles: Risk or Protective Factor for Women’s Psychological Health? Theories regarding women in the workplace began to emerge in the 1950s with growing numbers of women entering the workforce. Since then, there continue to be changes and developments in the quantity and quality of women’s involvement in the workplace and at home, which makes the modification of these initial theories necessary, although the underlying issues may be similar (Barnett & Hyde, 2001). Although women have always been responsible for a variety of tasks (e.g., managing household chores; providing care to their children, elderly

parents, or other relatives), entering the workforce initiated significant changes in women’s life roles. Employed women now constitute 46.8% of the U.S. labor force (U.S. Department of Labor, 2009), with 55.7% of women with children under the age of 3 and 67.7% of women with children under the age of 18 working outside the home (U.S. Department of Labor, 2008). As more mothers enter the workforce and as the number of hours women work outside the home continues to rise, women who occupy multiple roles, as well as the number of roles held by women, will increase. Society places unique demands on women to find a balance between meeting the role expectations of an employee, earning an income to support their family, and pursuing a career, on the one hand, and juggling the social roles of being a wife, mother, caretaker, and supportive friend, on the other. The debate as to whether occupying multiple roles serves as a risk or protective factor in the physical and psychological health of women continues to be a widely researched and important issue. The research on multiple roles presents contradictory findings, probably representing the current clash between more traditional views that multiple roles have a negative impact on a woman’s health and relatively recent findings that suggest multiple roles can result in positive health effects. The two primary theories that served as a basis for a great majority of the early research examining multiple roles are the scarcity hypothesis (Goode, 1960) and the enhancement or expansion hypothesis (Marks, 1977; Sieber, 1974). Whereas the scarcity hypothesis suggests that the more roles occupied by a woman, the more likely she is to deplete her limited resources, resulting in negative consequences for her health and well-being (Goode, 1960), the enhancement hypothesis suggests that multiple roles result in greater access to resources (i.e., social support, financial rewards) and increased likelihood for role balance (Marks, 1977; Sieber, 1974). These two main theories differ in their perspective on the relationship between multiple roles and women’s health: The scarcity hypothesis portends that multiple roles produce deleterious mental and physical health effects and stress, and cause conflict in balancing roles related to work and family, while the enhancement hypothesis suggests that engaging in multiple roles is protective and provides positive physical and psychological health benefits for many women. Current research has focused on work–family conflict and its subsequent impact on women’s jobs, family lives, relationships, and physical and mental health, with the understanding that there exists significant crossover between each of these domains (Ford, Heinen, & Langkamer,

Women’s Health Psychology

2007). However, results continue to be inconclusive regarding the potential benefits or detriments to women when they assume multiple roles, especially in terms of their psychological health and well-being. A review by Allen, Herst, Bruck, and Sutton (2000) illustrated the deleterious effects of work–family conflict on all aspects of women’s lives, including their general well-being and health. In particular, women’s psychological health may be adversely affected due to the demands imposed by multiple roles. Perceptions of greater role overload were associated with poorer mental health (Glynn, Maclean, Forte, & Cohen, 2009), and the addition of a work role in combination with family and social roles may explain increased rates of depression and anxiety in women as compared to men (Plaisier et al., 2008). Furthermore, for employed women living in dual-earner households, more perceived time spent in childrearing and the completion of more high-schedule-control tasks, such as yardwork, contributed to women’s increased psychological distress, whereas men’s psychological distress was not affected by their participation in childrearing or housework (Tao, Janzen, & Abonyi, 2010). These studies illustrate that multiple roles may be associated with increased psychological distress and that this experience may be specifically unique to women as compared to men, who may derive more benefits from occupying multiple roles. Despite the research demonstrating that multiple roles may be deleterious for women’s mental health, the benefits of multiple roles for women have been evidenced as well. Though much of the research on multiple roles has been conducted on White women, protective benefits of multiple roles have been demonstrated in ethnic minority populations, such as Black and Hispanic women (Black, Murry, Cutrona, & Chen, 2009; Rivera, Torres, & Carr´e, 2010). Plaisier and colleagues (2008) found that better quality of women’s roles was associated with better mental health outcomes, demonstrating that it is not necessarily the quantity of roles, but the quality and nature of those roles, that may be important. Women employed in poorer quality jobs, especially those with less control or autonomy, may experience greater feelings of work–family conflict, which has been found to lead to greater depressive symptomatology (Marshall & Tracy, 2009). Therefore, it may be the type of work, rather than the work itself, that contributes to the detrimental effects of occupying multiple roles. In addition, research has indicated that caring for young children may be a primary factor in the experience of role strain and adverse mental health outcomes. In their study of the association between anxiety and depression and multiple roles, Plaisier and colleagues (2008) found that for

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women without young children, working was a protective factor for mental health. However, this was not consistent for women with children, demonstrating that caring for children while also working may not confer the same benefits for all women. The greatest adverse outcomes are exhibited by employed women caring for young children, as they are the group with the largest workloads and most demands (Gjerdingen, McGovern, Bekker, Lundberg, & Willemsen, 2001). Therefore, when determining potential psychological health benefits of multiple roles, it seems important to consider not only the presence or absence of multiple roles but also the nature of those roles.

CONCLUSIONS AND FUTURE DIRECTIONS IN WOMEN’S HEALTH This chapter addresses several of the physical and psychological health problems faced by women, as well as social factors that may contribute to women’s health problems. Despite advances in the field, women’s health remains an area deserving increased attention, both in the United States and globally. It is important for clinicians and researchers who work in the field of women’s health to continue to serve as advocates for increased research funding, health education, and outreach to women from all ethnic-racial and cultural groups and for the achievement of equal status for women in academia. Continued focus on gender health disparities is critical, including an emphasis on eliminating systemic shortfalls in the healthcare delivery system that prevent women from accessing and utilizing health care (WHO, 2009). Those working in the field of women’s health must consider past achievements and successes as a guide for future goals, opportunities, and continued progress. This section provides a summary of the current status of women’s health, as well as some possible challenges and opportunities we may confront in the future. Health Care Historically, health care has been a male-dominated profession, with men serving as the primary providers and administrators in the field. This has changed significantly as the 26.8% of women graduating from medical school with MD degrees in 1983 increased to 48.3% in 2010 (Association of American Medical Colleges [AAMC], 2010). In prior years, women had been more likely to drop out of medical school than men (Fitzpatrick & Wright, 1995); however, recently this trend has declined,

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with more equal numbers of men and women matriculating and eventually graduating from medical school (AAMC, 2010). Although the gender distribution of medical school graduates is nearly equal, employment patterns, career paths, and salaries of physicians do differ according to gender. Women are more likely to be employed in lower-level positions, particularly in academic medicine (Gabriel, 2011); more likely to work part-time at some point in their careers (Tracy, Wiler, Holschen, Patel, & Ligda, 2010); and more likely to earn a lower salary than their male counterparts, even when controlling for specialty choice, practice setting, and work hours (Lo Sasso, Richards, Chou, & Gerber, 2011). Future research must examine these persistent discrepancies, especially given that male and female physicians now enter the workforce in nearly equal numbers yet are not achieving and earning at equal rates. As a result of women entering and graduating from medical school in greater numbers, more women currently serve as faculty members in academic medicine than ever before. This is positive in terms of the interaction between female physicians and female medical students with respect to mentorship, the availability of female physicians for training both male and female medical students, and possible augmented exposure to women’s health issues, as well as greater research and clinical opportunities available in the area of women’s health because of increased numbers of women in the field. However, while more women now enter academic medicine, the rate of women faculty who are awarded tenure and achieve senior or high administrative ranks has not advanced at the rate expected, given the influx of women in academia (Gabriel, 2011; Morahan et al., 2001). Factors related to the intersection of work and family life serve as an obstacle to the career advancement of female faculty in academic medicine (Shollen, Bland, Finstad, & Taylor, 2009) and also may contribute to faculty attrition among women, particularly minority women. In one study, women faculty in academic medicine were most likely to cite personal reasons such as childcare as their reason for leaving their position (Cropsey et al., 2008). In a review of the literature, Carnes and colleagues (2001) reported that lack of role models and mentors, feelings of isolation, gender discrimination, and lack of support for family-related responsibilities that most commonly fall on women serve as potential reasons women do not achieve academic leadership positions. Traditionally, such positions are obtained through research and the acquisition of grant funding, areas in which improvement for women is needed. In the future, women’s health is an area of

research that may allow female psychologists, physicians, and scientists to advance to academic positions, at the same time promoting the clinical and research knowledge of women’s health. Psychology The entrance and advancement of women in the field of psychology has been dramatic, as women earned nearly 72% of the PhD and PsyD degrees in psychology awarded in 2005 (Cynkar, 2007). Among PhD degrees alone, 67% were awarded to women, with the largest portion earned in the field of clinical psychology (Bailey, 2004). The majority of these degrees were awarded to White women (81%), followed by Hispanic women (7%), Black women (6%), Asian women (4%), and women of Native American or Pacific Islander descent (2%). Over the past two decades, the percentage of PhD degrees awarded to women of color increased from 12 to 19%, indicating increasing diversity among women in the profession of psychology (Bailey, 2004). The growing number of women entering psychology overall, in addition to increases in women of color, no doubt will influence research agendas and clinical attention in the area of women’s health. The growing number of women earning PhDs in psychology has coincided with an increase in both the number of grants submitted by women and the number of grants awarded to women. Since the 1970s, the percentage of articles with female first authors published in psychology journals, including top-tier journals, has dramatically increased. In the field of health psychology, for example, 19% of the articles published in the Journal of Behavioral Medicine were first authored by women when the journal was first published in 1978, compared to 50% in 2011. Women also are becoming increasingly represented in editorial roles, with a female currently serving as editor for 23% of the American Psychological Association’s journals, as compared to 5% in the early 1980s. Despite these advances, women in psychology face many of the same challenges as women employed in health care. One primary challenge is obtaining senior faculty positions in academia. While women constitute 39% of the full-time faculty at 4-year academic institutions, 30% of women achieve tenure compared to 53% of men (American Psychological Association, 2000). The reasons for this discrepancy must be evaluated and remediated. Other challenges remain in terms of compensation and leadership. Women in psychology earn approximately 9% less than men on average, and though women represent the majority in psychology, women do not assume leadership

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positions on par with men (Cynkar, 2007). Efforts are currently underway to engage more women through the American Psychological Association’s Leadership Institute for Women in Psychology (LIWP), with the goal to prepare, support, and empower women psychologists as leaders. The LIWP provides education, training, and research support through workshops and webinars and hosts networking meetings at research conferences to facilitate professional development of female psychologists. Continued efforts in this vein are a positive step, and women in the field must continue to advocate for the advancement of other women psychologists, particularly through mentorship.

Mentorship The increasing number of women in health care and psychology has a direct impact on the personal and professional development of women pursuing undergraduate and advanced degrees. While female mentors at senior levels may be difficult to find in academia, those female graduate students who have the opportunity to work with female mentors benefit professionally as well as personally (Schlegel, 2000). For women clinical psychologists, the receipt of effective research mentoring as graduate students is positively associated with conducting psychological research in the future and becoming research mentors for other women (Dohm & Cummings, 2002). As discussed throughout this chapter, women experience stressors that are unique to those experienced by men. Having a mentor who is both sensitive to and knowledgeable about these issues can help the female student navigate these stressors and find an adaptive balance between her role as a professional and being a woman with many other life roles.

Research Scant research prior to the 1990s included female samples exclusively. This approach failed women because it was assumed that either women’s physiological systems were the same as males or female hormones would confound research, resulting in a strictly male sample. Despite the development of organizations such as the Office of Research on Women’s Health in 1990 and the NIH Revitalization Act of 1993 that required research supported by federal funds to include women and individuals from diverse ethnic-racial groups, advances still are needed in women’s health research.

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Future research must strive to increase the inclusion of women in clinical research trials and to focus on female samples when appropriate. Though progress has been made, women still remain underrepresented; as such, researchers should aim to present separate outcomes for both male and female participants to ensure that gender differences are being detected when meaningful (Adler, 2010). Studies designed to further assess risk factors and disease symptoms that may differ significantly from those of men, or those factors and symptoms that may be exclusively found in women, must be conducted. For example, as discussed earlier in this chapter, women continue to be assessed for and diagnosed with heart disease based on criteria researched on men. This has drawbacks in that symptoms considered atypical for men may be what are typical for women, and without this knowledge, appropriate care for women may be limited. In addition to further research focusing on gender differences in risk factors, illness presentation and course, and pharmacology and other treatments, more attention and increased funding must be dedicated to disorders that occur primarily in women, such as lupus and rheumatoid arthritis. Furthermore, women cannot be categorized as a homogeneous population. For example, although morbidity and mortality statistics provide evidence for ethnic-racial disparity for various health conditions, adequate research illuminating risk and other relevant factors is lacking. Despite statistics that Black women living in the United States have the fastest growing rates of HIV infection, as well as poorer cancer-related health outcomes relative to White women, research has failed to reach out to women of color and gain their participation in clinical trials (Killien et al., 2000). Women’s health research must include representative samples of all women, including neglected or hard-to-reach populations, such as women of color, lesbians, women from lower socioeconomic backgrounds, and the elderly. Crosscultural investigations that include women from various countries also are warranted. Continued research on women’s health may be contingent on women in research fields propelling these initiatives and objectives. In regard to grants funded by the NIH, from 1994 to 2006, the number of research grants awarded to women nearly doubled, with women receiving 21.3% of all NIH grants in 2006 (NIH, 2008). Yet, these increases do not signify equality in terms of grant funding. In 2006, 24% of R01 grants were awarded to women, and grants awarded to female principal investigators (PIs) tended to be 80% of the average size awarded to male PIs. It is unclear why women have not yet achieved equality in grant funding. One explanation may be that

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women are less likely than men to continue to apply for funding in the late postdoctoral and early faculty years (Ley & Hamilton, 2008), coinciding with childbearing years for many women and therefore indicating a time when women’s and men’s career paths may diverge. For those women who do apply for funding, they are awarded grants at approximately equal rates as men (NIH, 2008). Therefore, the disparity may be explained by the quantity and quality of applications submitted by women and by differences in academic rank, as men are known to occupy higher positions in academia (Ley & Hamilton, 2008; Waisbren et al., 2008). Women’s involvement in conducting research remains an important area of concern, as research leadership and grant funding are critical for women’s career advancement and for the advancement of women’s health initiatives as a whole. Why Women’s Health? Why Now? The need for research and clinical attention to women’s health issues has always been present. However, only in the past few decades have women’s health-care needs, research, and social and cultural issues been deemed important health topics in both the clinical and research setting. Because women are living longer than ever, the need for empirically based research findings, clinical care, and a more comprehensive understanding of women’s health is greater than ever. In 1940, there were 211,000 women over the age of 85 living in the United States. Today, in the United States alone, there are over 3.8 million women over the age of 85—many of whom have multiple chronic diseases that affect their physical and psychological health (U.S. Census Bureau, 2011). Earlier in this chapter, we discussed three leading causes of death for American women: CHD, cancer, and stroke. With respect to elderly women, nearly 70% of total deaths can be attributed to these three conditions (Guralnik, 2000). Research focusing on health behaviors and lifestyle factors relevant to disease development, course, outcome, and quality of life is necessary to develop and disseminate prevention programs, promote psychosocial intervention, and facilitate coping efforts. Attention to such behaviors as cigarette smoking, alcohol consumption, exercise, diet, and seeking routine Pap smears and mammograms can influence not only illness prevention but also outcome. From a global perspective, improving the physical and mental health of women remains a crucial pursuit, as widespread gender inequities and failing health-care systems continue to have a profound impact on women. Attention to women’s health issues in both developing and

developed countries is critical due to women’s involvement in reproduction and childrearing and in their role as consumers and providers of health care (WHO, 2009). In a 2009 report on women and health released by the WHO, future goals included building strong leadership, improving health systems and service provision, changing public policy, and expanding knowledge and health literacy. With these goals met, the ultimate outcome would be vast progress and advances in health for everyone, as improvements in women’s health is greatly intertwined with the increased health of children, families, communities, and even society (WHO, 2009). Prevention and treatment issues are equally important for psychological health as for physical health. Elderly women commonly experience the death of spouses and friends, the diagnosis of medical conditions, and the social stereotypes of growing old in a society that glorifies youth, all of which contribute to health and well-being. Problems experienced by the elderly influence women of all ages because 72% of care given to the elderly is provided by women, including daughters (29%), wives (23%), and other women who serve as lay or professional caregivers (20%; Siegler, 1998), placing the female caregiver at risk for both physical and psychological health concerns, as reviewed earlier in this chapter. Because women live longer than men, with a great majority of elderly women living alone, health education must create interventions and outreach programs that accommodate elderly women who serve as their own primary caretakers, as well as younger caretakers who may have a difficult time leaving the house because of child care or household responsibilities. In addressing this concern, the Centers of Excellence in Women’s Health (CoEs) have turned to the Internet as a way to reach women. The CoEs adopted online health information sites relevant to women patient support groups and are developing other plans to expand these Internet services (Crandall, Zitzelberger, Rosenberg, Winner, & Holaday, 2001). Because women continue to make the majority of the family health-care decisions, the Internet serves as a convenient and informative way for women to access resources and acquire education related to women’s health. Caution is warranted, of course, as not all Internet sites relevant to women’s health issues provide comprehensive or accurate information. Several U.S.-based programs and organizations are cornerstones in the field of women’s health, including the American Medical Women’s Association, Division 35 of the American Psychological Association (i.e., Society for the Psychology of Women), the Office of Research

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on Women’s Health, the Society for Women’s Health Research, and the Women’s Health Initiative (WHI). In an effort to unite the multiple aspects and professions included in the field of women’s health, the CoEs were developed in 1996 with the goal of promoting women’s health by bringing together those associated with research, clinical care, health education and outreach, and medical training and by increasing the number of women in academic medicine (Morahan et al., 2001). As of 2005, there were 20 CoEs in academic health centers, with women serving as directors for 17 of these centers (OWH, 2005). Programs such as these allow both the physical and psychological care of women to transcend the standards and practices of the past. The future of the field of women’s health largely depends on organizations such as these, not only to further the advancement of knowledge in women’s health issues but also to offer interdisciplinary support to women across the applied fields of medicine, health care, and psychology and their corresponding academic departments. The field of women’s health holds many exciting opportunities and potential advances for all women. Further consideration of existing evidence and continued work in the field of women’s health psychology in context can be found in Spiers, Geller, and Kloss (in press).

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CHAPTER 22

Primary Care Psychology ROBERT A. DITOMASSO, BARBARA A. GOLDEN, STACEY C. CAHN, AND AMELIA G. GRADWELL

PRIMARY CARE PSYCHOLOGY 512 HISTORICAL OVERVIEW 512 FOUNDATIONS OF PRIMARY CARE PSYCHOLOGY: CHALLENGES AND OPPORTUNITIES 515

COMMON PROBLEMS IN PRIMARY CARE 523 FUTURE DIRECTIONS 532 REFERENCES 533

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synergistic relationship that exists between mind and body phenomenon, there is little wonder why patients seeking care from primary care physicians (PCPs) may do so for a variety of mental and physical reasons. (p. 295)

Within the past several years, the interface between professional psychology and primary care medicine has begun to burgeon. Primary care psychology may be defined as “the provision of health and mental health services that includes the prevention of disease and the promotion of healthy behaviors in individuals, families, and communities” (Bray, Frank, McDaniel, & Heldring, 2004, p. 8). This specialty area has recently become a major focus of interest and study and has challenged psychologists to rethink their roles, functions, and modalities of professional practice. Today, the emergence of primary care psychology as a model for integrating psychology and medicine is at the forefront of the health-care reform movement. This new movement has been driven by a variety of forces rooted deeply in the interest to deliver health care in a most efficient and effective manner. Among other things, what uniquely defines this area are the problems presented in the primary care setting and the important role that psychological factors play in health and wellness. In consideration of these factors, the meshing of professional psychology and primary care medicine is not only welcome but has been a long time coming. In describing primary care, DiTomasso and Esposito (2005) note the following:

The convergence of a number of historical factors has evolved to shape the emergence of primary care psychology as a critical specialty area.

HISTORICAL OVERVIEW Traditionally, and even today, the training and career paths of PCPs and psychologists intersect only minimally. Oddly enough, considering the types of complaints patients typically bring to primary care providers, the cross-talk between these two provider groups has been limited, if essentially nonexistent, for many years. Primary Care Medicine To fully appreciate the contributions of psychology to primary care, one must consider a number of important factors. The history of psychology and medicine offer much in the way of understanding how these two disciplines have up to this point remained so separate and distinct. Physicians and psychologists are educated in separate settings, rely on totally distinct models, read separate literatures, practice in separate quarters, speak a different language, focus their attention on different parts of the patient, and communicate all too infrequently. Misperceptions about roles and functions across these disciplines have abounded

Physicians have begun to realize that a thorough understanding and treatment of the whole patient is critical in accurately conceptualizing patient problems and in developing effective interventions. Primary care patients present with a multitude of possible problems, many of which have central components that are behavioral in nature. Given the reciprocal and 512

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and been coupled with problems related to severe time constraints among practitioners, lack of mutual and convenient availability, poor understanding of each others’ models, the absence of fully integrated services, and the like. The failure to appreciate the fit between primary care and psychology has profound implications related to the quality of health care offered to patients. As specialty areas of practice, in light of patient needs, primary care medicine and primary care psychology are interdependent on each other and so intertwined that the continued independent existence of one without the other appears inconceivable, if not unjustified, today. In the history of medicine, primary care grew out of the need to address the fractionation of patient care so often characterizing specialty care. As defined by the Institute of Medicine, primary care encompasses “the provision of integrated, accessible health-care services by clinicians who are accountable for addressing a large majority of personal health-care needs, developing a sustained partnership with patients, and practicing in the context of family and community” (Donaldson, Yordy, & Vanselow, 1994, p. 15). The notable lack of coordination of patient care and a centralized place where patients could rely on a provider to help them navigate their way through the medical system was unarguably sorely needed. Patients were often confused, frustrated, and dissatisfied once they hopped on the medical merry-go-round and became the subjects of unnecessary medical tests, stemming in large part from a failure to recognize and consider the needs of the whole patient. The emergence of family medicine, for example, with an emphasis on continuity and comprehensiveness of care and the premium placed on the psychosocial aspects of patient care, was a welcome relief. The primary care medicine model (Rakel, 2002; Taylor, 2003) is distinctively characterized as a patient-centered approach with an emphasis on the physician–patient relationship, effective physician–patient communication, collaborative patient engagement in decisions, patient empowerment to enhance their own health, and the employment of techniques and strategies that promote health and prevent disease (Belar, 2003; Schulte, Isely, Link, Shealy, & Winfrey, 2004). For example, one of the most important components of patient satisfaction with primary care encompasses the quality of the physician– patient relationship (DiTomasso & Willard, 1991), perceiving one’s physician as warm, caring, empathic, and understanding. Yet, considering the implications of the expectation that PCPs handle a significant majority of health-care problems, even this ideal left a number of important issues

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unattended or only partially attended to in the delivery of patient care. While health-care systems that recognize and address the behavioral and physical causes of disease have quickly emerged as the new focus of our healthcare system (American Psychological Association: Public Policy Office, 2000), the demands created overwhelmingly challenge the ability of the typical PCP to exclusively and independently provide services to meet this ideal. Primary care physicians desperately need collaborative specialized psychological practitioners to achieve this goal. There are a number of sound reasons for believing so. PCPs confront problems on a daily basis for which 8 of the top 10 leading gauges of health are essentially behavioral in nature: unhealthy eating habits, excessive alcohol use, tobacco use, lack of exercise, acts of violence, acts of suicide, injuries, and unsafe sex practices (U.S. Department of Health and Human Services, 2000), Moreover, as experienced clinicians know, while psychological problems may present as somatic complaints, acute and chronic stressors often trigger physical symptoms and exacerbate psychophysiological disorders. Likewise, organically based problems may masquerade as psychological disorders, or patients may suffer from both simultaneously (DiTomasso & Esposito, 2005). This diverse menu of presenting problems falling within the noted domains, often presenting in undifferentiated states, is understandably challenging. The missing link has been the lack of a primary care psychologist to address these ongoing challenges and to shore up the breadth of services provided by the PCP, not to mention the value of an integrative approach that considers the physical, cognitive, affective, social, and cultural factors in patient care (McDaniel, Belar, Schroeder, Hargrove, & Freeman, 2002). Considering the host of factors that characterize the practice of primary care medicine, psychology can undoubtedly help to fulfill this need. We would argue that primary care psychology integrated within a collaborative health-care model serves as the linchpin upon which truly comprehensive, effective health care rests. Successful partnering among psychologists, PCPs, and patients is essential. Primary care has been recognized as the most critical and central component of the health-care system today. Frank, McDaniel, Bray, and Heldring (2004), elucidating identifying attributes of primary care medicine from a functional standpoint, described it as the following: the de facto point of initial contact into the health-care system; an ongoing, long-term continuous health-care model; a broadranging and complete integrated service; a central means of organizing and coordinating care; and a person-centered

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as opposed to a disease-centered approach to care. Primary care places a premium on understanding and appreciating the person within the patient; primary care psychology provides the theories, principles, assessment mechanisms, and clinical strategies to effectively achieve this end. Primary care providers, including family practitioners, general internists, pediatricians, and obstetriciangynecologists, by definition, serve a gatekeeping mechanism (Pace, Chaney, Mullins, & Olson, 1995). Through this role, the PCP identifies patient problems and sets the stage for patients to obtain more specialized care yet never abandoning the patient and, all the while, maintaining a centralized coordinating function. Gatekeeping, by its very nature, presupposes recognition of problems requiring more specialized assessment and treatment. What we know about primary care supports the need for this specialized approach from a psychological perspective. The characteristics of primary care medicine noted here beg for primary care psychology that capitalizes on its distinguishing characteristics and addresses its unique needs. Primary care psychologists, generalists themselves by nature of their basic training at the doctoral level, remarkably, require a great deal of specialized knowledge and skills to make them well suited to the context within which care is provided (McDaniel, Hargrove, Belar, Schroeder, and Freeman, 2004). The unique problems and presentations of patients, the volume of patient visits, specific peculiarities of the office setting, the average number of three reported patient problems per visit, severe constraints on time limits available for each visit (15 minutes) (Kaplan, Gandek, Greenfield, Rogers & Ware, 1995), and the prescribed broad role of the PCP warrant a specialized integrative approach. Since about a fourth of PCPs report that their scope of practice is too large (St. Peter, Reed, Kemper, & Blumenthal, 1999), this integrated approach is even more critical. In effect, PCPs have carved out a humongous and intricate task for themselves that requires support and assistance from more specialized psychology colleagues on site. In primary care delivery systems, the average number of patients per a full-time equivalent physician is 2,191 (Medical Group Management Association, 2006). A four-person practice might, then, provide care to possibly 10,000 patients. If the average patient sees the PCP twice a year, that would amount to 20,000 visits. Given this potential volume of patients and the limited availability of time, the demand and breadth of service far outweighs the ability to meet the need. This state of affairs also cries out for an interdisciplinary approach. However, not only have traditional models of training psychologists

ill prepared them to meet this need but also the manner in which psychologists define their roles have been too limiting and restrictive by overemphasizing assessment and psychotherapy. A thorough consideration of the unique elements of primary care sheds even further light on this issue and justifies the existence of a psychological specialty in primary care. Primary Care Psychology The Committee of Professional Practice Task Force on Primary Care of the American Psychological Association (Haley et al., 1998) provided a thorough and thoughtful overview of the need for revising how psychologists think about primary care and how they can make themselves more adaptable to this setting. While traditionally trained psychologists may need to be retooled, newly trained psychologists must come to practice with a new mind-set and fully prepared to embrace this new horizon. Otherwise, the field of psychology runs the risk of training practitioners for whom primary care represents little more than just a poor fit. To further understand this issue, one must thoroughly consider the practice of primary care medicine. Once understood, the need to cultivate and carve out a new role for psychologists comes to the fore. Perhaps no other specialty in medicine, even psychiatry, has embraced the interface between the mind and the body. While considered generalists, PCPs need a significant amount of specialized knowledge about a seemingly endless array of problems in patients presenting across a wide span of age ranges. This situation leads to a circumstance in which PCPs are confronted with an overload of potential factors that must be addressed simultaneously. Navigating this area solo has the potential for undermining the quality of patient care. Some might be tempted to describe PCPs as jacks of all trades and masters of none. We would argue that while a jack of all trades may fit the role of the PCP, their requisite knowledge base and skill mix necessitate a broad and thorough mastery of legions of potential presenting complaints. Most primary care practices boast large numbers of patients across the life cycle from birth to death, with patients on any given day presenting with any one of a voluminous list of complaints. A full explanation and explication of factors may be constrained by time that is limited to 15-minute visits on average and challenge even the most talented and competent medical provider. Consider the following scenario. On a daily basis, a PCP sees a high volume of patients, balances multiple priorities

Primary Care Psychology

simultaneously, confronts problems early on in undifferentiated states, spends a limited amount of time during a patient visit, differentiates and attends to emergent and nonemergent problems, confronts a high proportion of patients with mental health issues, addresses traditional medical problems for which behavioral factors play a critical role, and switches back and forth between patients of different ages (pediatrics, adolescent, adults, older adults), confronting a variety of problems whose manifestations differ across age groups. There is little wonder why PCPs have been less likely to detect common psychological problems, including depression and anxiety, and are not as effective in motivating patients to follow through on mental health referrals to outside sources (Cos, DiTomasso, Cirilli, & Finkelstein, 2010). Mental health difficulties are highly prevalent in primary care patients; yet, a significant proportion of these problems are undetected and as a consequence go untreated by the primary care provider. For example, Zung, Broadhead, and Roth (1993) reported that about 6 to 10% of patients presenting to PCPs for any reason have a diagnosable major depression and about 30% experience depression symptoms; others (Nisenson, Pepper, Schwenk, & Coyne, 1998) have found a prevalence rate of 14.6% for any anxiety disorder among primary care patients. Despite these rates of prevalence for common mental health problems in this setting, PCPs underdiagnose mental disorders (Schulberg & Burns, 1998). In addition, many PCPs are overwhelmed by time limitations and find handling mental health issues enormously stressful, perhaps inadvertently at times ignoring the symptoms or being less likely to ask about them. Nonetheless, for whatever reason, undetected mental health issues may lead to increased dysfunction in some patients, contribute to rising medical costs, decrease patient quality of life, and possibly result in overutilization of services in primary care. DiTomasso, Golden, Morris, and Chiumento (2010) have identified a number of factors that have ushered professional psychology into the world of primary care medicine. Among these factors, four seem to assume primary significance. Although the traditional focus of the medical field was on the biological to the exclusion of the psychosocial, this approach has been demonstrated to be remiss in its ability to explain and treat patients in medical settings. As Engel’s (1977) biopsychosocial model has begun to take firmer hold, appreciation of the important interface of these factors in conceptualizing patient problems and designing treatment plans has been emphasized. Also, the growing evidence base demonstrating the role of behavioral lifestyle factors in common problems in

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primary care has underscored the important potential contributions of psychology (Anton, Hand, & Perri, 2010). Likewise, the high volume of mental health problems in primary care has solidified the need for specialists who are familiar and skilled in dealing with the common psychological problems confronting primary care practitioners and their patients. Finally, the emphasis on empirically based approaches in psychology today has provided a perfect match for the evidence-based medicine model that now dominates the field. Yet, despite this state of affairs, the field of psychology has lagged behind the resounding need for psychological specialists in primary care. The reasons are likely to be many and varied. Psychologists typically sit in their offices across town, separated and isolated from medical providers; typically possess little knowledge about primary care; have viewed themselves primarily as mental health specialists (De Leon, 1991); have preferred the private practice model; have been less interested and skilled in interprofessional collaboration with physicians; are less available for timely and convenient access by physicians; and are less knowledgeable about the day-to-day operation of primary care practice. FOUNDATIONS OF PRIMARY CARE PSYCHOLOGY: CHALLENGES AND OPPORTUNITIES Considering the needs in primary care and the state of affairs in psychology, this mismatch has created quite a dilemma. It is, then, incumbent upon psychologists to develop new and innovative methods and models of interfacing with PCPs. The day is upon us when psychologists must reinvent themselves to effectively address the needs of patients and practitioners in primary care. There are a number of areas in which change must occur to meet this demand (Haley et al., 1998). Embrace the Primary Care Model At the most basic level, to fully function as a psychologist in primary care requires a thorough appreciation and acceptance of the primary care medicine model. This necessitates an understanding of the roles and functions of the PCP and the belief that the PCP is capable of handling the wide range of problems presenting in these settings. Psychologists with a specialist mentality will repeatedly confront significant challenges, conflicts, and cognitive dissonance in working with PCPs. Although PCPs are generalists, they are specialists in what they do, as documented by the

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acquisition of board status in their primary care specialty. In short, PCPs specialize and possess expertise in the general practice of medicine! Primary care in this sense is as much a specialty, then, as any other medical specialty. To fully embrace this specialty model, the primary care psychologist must become immersed in the underlying tenets of primary care medicine, including continuity of care, comprehensiveness of care, patient education, the psychosocial aspects of patient care, and the whole patient (Rakel, 2002; Taylor, 2003). Bringing psychology to the PCP requires an understanding of how PCPs think, frame problems, approach patients, and construe their role, as well as developing knowledge and respect for the norms, mores, and customs that characterize practice in this setting. As DiTomasso, Golden, Morris, and Chiumento (2010) have noted, the psychologist “must become a student of primary care and fully embrace the model, understanding and accepting its basic tenets and its underpinnings . . . filtering what the therapist does through the lens of the physician will help make what is offered to the physician most practical and applicable” (p. 9). The primary care psychologist must at a most basic level believe in the model, have confidence in its potential, welcome PCPs as competent collaborators, and be motivated to fill the gaps between demand and service delivery. Obtain Specific Training in Primary Care Psychology The emergence of primary care as a specialty necessitates that psychologists must be trained to prepare themselves to assume the role of the primary care psychologist. A clinical child psychologist with extensive experience and competence in exclusively working with children with ADHD in an outpatient setting would hopefully never, without proper education, training, and supervision, profess expertise in working with seriously mentally ill adults in a hospital setting. This analogy extends to primary care psychology. Simply put, preparation as a practicing generalist professional psychologist in no way fully prepares a practitioner to fulfill the role of the primary care psychologist (Belar & Deardorf, 1995; McDaniel et al., 2004). Assuming a strong background as a generalist steeped in the biopsychosocial model (Engel, 1977), McDaniel and colleagues (2004) have elucidated a thorough 13component curriculum addressing the biological, cognitive, affective, behavioral, developmental, and sociocultural dimensions of health and wellness; health-care policy and systems; common problems and their aspects and assessment; interventions; collaboration with primary care providers; and ethical, legal, and professional issues. Psychologists wishing to assume roles in primary care settings

should seek education and training experiences at one or more points in time spanning the predoctoral, internship, postdoctoral, and/or respecialization levels. In other words, practicing in the primary care model is not simply a matter of applying what one knows from general psychological practice to a new setting. Rather, based on a specific set of knowledge, skills and attitudes relevant to primary care medicine, the primary care psychologist is fully equipped to maximize his/her impact in this unique setting. Expand the Nature and Scope of Practice In the age of primary care psychology, practitioners must recognize that the times of sitting alone in one’s office waiting for patients to appear is well behind us (Haley et al., 1998). This antiquated, passive style of practice must be replaced by a proactive model in which psychologists seek opportunities to function more as members of interdisciplinary teams. The comprehensive assessment and treatment of patients necessitates careful attention to the biopsychosocial aspects of each individual patient and the need to provide physicians and patients with services that are carefully integrated and mutually monitored. Otherwise, the psychologist is relegated to the position of practicing within a vacuum, ill equipped to meet the demands of patients, much less the expectations of PCPs. PCPs expect psychologists to provide effective, practical, and efficient services that add value over and above what is being offered. Primary care psychologists must, then, be prepared to demonstrate and disseminate their added value to attain credibility and earn the confidence of the PCP. The presumption is that having a psychologist working side by side with the PCP makes a clinically significant difference in patient care outcomes, possibly reducing overutilization of medical services, identifying psychological problems earlier, handling of difficult and otherwise time-consuming patients more effectively, creating a comprehensive conceptualization of patient problems, improving patient quality of life, enhancing physician–patient communication, and even reducing costs. Regarding cost containment, Olfson, Sing, and Slesinger (1999) pointed out the cost offset effect, the decrease in medical service utilization that is associated with identifying psychological problems masquerading as medical illness and supplying psychological services to patients. Newman and Rozensky (1995) have commented as follows: In our cost-conscious health care environment, psychological services, as part of comprehensive healthcare, have been

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shown to forestall or decrease the rise in overall medical service costs (Pallak, Cummings, Dorken & Henke, 1994). For example, Olbrisch (1981) found a savings of 1.2 hospital days for surgical patients who received preoperative psychological interventions, while Jacobs (1988) showed that biofeedback training prior to surgery reduced hospital stays by 72% and postoperative visits by 63%. Gonnick, Farrow, Meiers, Ostmand, and Frolick (1981), looking at hospital costs pre- and post- medical treatment found that behavioral medicine interventions yielded a $5 savings in medical costs for every $1 in psychological services provided (p. 5).

More recent research has confirmed the importance of integrated and collaborative health care. Cummings, O’Donahue, and Cummings (2009) found that patient follow-through on referrals increased dramatically (about 800%) comparing those made to outside clinicians in the community versus those made to primary care therapists within the same setting. Data such as those described here argue for the development and implementation of interdisciplinary approaches to patient care that attend to the whole patient on-site. Primary care psychologists must be prepared to study the impact of their services by analyzing clinical outcomes and other related measures that shed light on these important matters.

Develop a New Practice Setting Traditionally, many professional psychologists have practiced in office settings that are separate and distinct from their colleagues in medical settings. This physical separation undermines accessibility, communication, and collaboration between professionals (Borresen & Ruddy, 2010). Likewise, distance between practitioners is more than just a physical marker; it demonstrates the separation of the mind and body in patients’ eyes, often making it difficult for physicians to assist patients in viewing psychology as part of the team and convincing patients to seek help at the time that it is needed. Colocation of practices and the development of interdisciplinary group practices may help to resolve such issues. Ideally, the attainment of a truly integrated health-care model in which PCPs and psychologists are working side by side will address and solve many of these problems. Having psychology readily available is likely to increase its utilization and its inclusion in assessment and treatment of patients and provide more truly comprehensive approaches to patient care. Social proximity is likely to foster a sense of collegiality and reliance that enhances the use of the psychologist by the PCP and, more important, brings psychology to the table as an equal partner in explaining and addressing patient problems.

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Foster Interprofessional Collaboration Traditionally, psychologists have been more professionally distanced and aloof in their interactions with primary care providers. This approach creates distance between providers even when sharing the same patient and essentially limits, if not precludes, effective communication. This amounts to practicing in a vacuum, with each provider having information that the other could use to benefit the patient. Under this approach, as the saying goes, never the twain shall meet. Today, what is called for is a collaborative interdisciplinary model in which psychologists and PCPs understand each other’s roles; identify common ground between them; feel free to offer each other insights, knowledge, and opinions about patients; and coordinate a plan of action (Borresen & Ruddy, 2010). Mutual responsiveness and respect for the other’s roles are essential.

Emphasize the Primacy of Consultation Traditionally, psychologists have been trained in roles that have defined them as mental health practitioners as opposed to health practitioners (De Leon, 1991). Significant emphasis and role identification have centered on the assessment and intervention competencies in training professional psychologists; consultation has typically been afforded less attention in the curriculum and training experiences of students. Primary care psychology requires a shift to a consultative model (James & Folen, 2005), whereby psychologists are available to consult with physicians on the fly to provide practical, useful, and strategic advice in a quick-paced manner on the basis of limited available information. On many occasions, the psychologist may also use his or her observational skills to assist PCPs. In one instance, while making rounds in the hospital with a physician and intern, the primary author saw a 32-year-old female in the intensive care unit for whom a heart attack was being ruled out. The patient, being monitored for heart rhythms, heart rate, and blood pressure, had recently lost her dad to a sudden heart attack. The physician suspected a nonorganic cause for her symptoms. The role of emotional factors was reinforced when the psychologist asked the patient about her recent loss and immediately observed a relatively dramatic and sudden increase in her heart rate and blood pressure. A basic assumption of consultation is that the primary care psychologist must be prepared to work with PCPs to enhance their abilities to handle similar problems in the future. Cos, DiTomasso, Cirilli, and Finkelstein (2010)

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have provided a thorough review of the role of the psychologist as a consultant in primary care. Consultation, as opposed to psychotherapy, for example, allows the psychologist to dramatically increase services to a large number of patients. In a busy primary care office in which patients are seen every 15 minutes in 4-hour sessions, in one morning session alone, four PCPs can see 64 patients. A psychologist providing psychotherapy in this setting would see only four primary care patients during that time, making the psychologist essentially unavailable for consultation to the physicians. The result is missed opportunities for assisting patients and PCPs alike. Generally, consultative services fall within one of two major areas: patient-centered case consultation and consultee-centered case consultation (Caplan, 1970; Cos et al., 2010). As Cos and colleagues (2010) have described these models: “A client-centered case consultation model is focused on providing clinical behavioral health services directly to the primary care patient, usually depending on joint collaboration and follow-up by the primary care provider and behavioral health clinician. In a consultee-oriented model, the behavioral health clinician provides consultation and troubleshooting of service delivery problems on both individual and system levels, to better improve patient care” (p. 63). Understand Models of Primary Care Consultation Gatchel and Oordt (2003) have described five models of behavioral health consultation in primary care, from simple colocation to a more ideal sophisticated integrative and collaborative model: the colocated model, the primary care provider model, the staff advisor approach, the stepped care approach, and the primary care behavioral health model. Each of these models offers unique components, ranging on a continuum from essentially colocated, independent modes of practice with minimal direct collaboration to the integrated model in which the primary care psychologist “works side by side with the primary care providers, using the same office space . . . seeing 10–15 patients per day for relatively brief periods of time, . . . with emphasis in problem-focused assessment and a physician-friendly treatment plan” (Cos et al., 2010, pp. 64–65) and averaging between one to four consultation visits. To consult with PCPs about specific matters of relevance in primary care can promote successful outcomes. DiTomasso, Cahn, Panichelli-Mindel, and McFillin (2011) have provided an overview of a number of critical factors that appear necessary for ensuring effective consultation

competence in general. These same factors are very relevant in considering consultation in primary care. First and foremost, primary care consultation requires that the psychologist must have achieved the educational, training, and professional experiences that specifically qualify him or her to offer consultative services. Failure to fully appreciate the idiosyncratic features of practicing in primary care is likely to undermine the quality of the service. DiTomasso and colleagues (2011) also note the importance of forming effective consultative relationships with PCPs, identifying relevant agenda items, developing specific and measurable goals, knowing what questions to ask and important data to seek, educating PCPs in a consistent theoretical and practical model that makes sense to the PCP, obtaining ongoing feedback throughout the process, and evaluating the results of the process. That being said, typically, consultation may be brief and on the fly, and the primary care psychologist may feel great pressure to provide a professional opinion on limited information within a very short time frame. This scenario underscores the profound importance for the consultant to know exactly what questions to ask and what information is critical in developing sound consultative advice in a streamlined fashion. In the event where a consultant concludes there is insufficient information to offer advice, the consultant may advise and educate the PCP about what further information is needed. On the other hand, in an emergent situation, such as assessing the risk of suicidality in a patient, specific knowledge and clear communication of the criteria that increase the risk of an imminent suicidal act is crucial. A sample of some general rules of thumb will help the primary care consultant achieve positive outcomes. First, consultants would be wise to develop and maintain a healthy respect for physical and organic causes of problems and the signs that support a physical versus psychological etiology (Colameco & DiTomasso, 1982). The temptation to jump to a psychological etiology for a symptom must be balanced by the realistic possibility of a physical cause. In contrast, attributing a symptom to a physical cause without consideration of the psychological is just as problematic. PCPs and psychologists have much to learn from each other in this regard. Second, emergent medical problems always take precedence over nonemergent psychological problems. The consultant must be prepared to avoid interpreting such events as a sign that his or her opinion is not valued. A depressed patient undergoing an acute myocardial infarction must be rushed to the emergency room; the depression can wait. Although this is an extreme example, hopefully the point is taken. Third, PCPs have the advantage of wait and see in observing

Primary Care Psychology

and monitoring the unfolding of a problem over a period of time across a number of visits. This approach may forestall an immediate final decision that the PCP may otherwise deem as too premature. Fourth, remembering that the patient is under the overall care of the PCP and that all treatment decisions should be coordinated with the PCP is important. Primary care psychologists must respect the norms in primary care and never refer a patient to another physician specialist or undermine the role of the PCP in any way. Carefully and tactfully expressing an opinion and joining with the PCP in facilitating the care of the patient is likely to yield a beneficial outcome for the patient, not to mention the professional relationship between the PCP and psychologist. Fifth, PCPs have the right to reject and override our consultative recommendations. The more PCPs and psychologists work together and the more benefit that patients accrue from this association, the more likely it is that PCPs will come to value the input and insights of their psychologist colleagues. Assume Varied Roles in Primary Care Psychologists in primary care may also assume any one or more of a variety of roles and functions: teacher, researcher, consultant, clinician, and/or administrator (DiTomasso, Knapp, Golden, Morris, & Veit, 2010). These roles provide unique and exciting opportunities for psychologists to share their expertise and enhance their potential impact. The nature of each of these roles is tied very closely to the primary care medicine model. Teacher Many primary care psychologists engage in formal and informal teaching in the didactic classroom, inside and outside the exam room, or even at the bedside. Those in residency and outpatient primary care settings do a great deal of formal didactic teaching as part of the behavioral science curriculum (Kurlansik & Levine, 2010). In addition to these presentations, designed to meet curricular standards of relevant accreditation boards (e.g., American Academy of Family Physicians), psychologists engage in quick sidebar teaching interactions to enhance the care of patients that simultaneously provide opportunities for teachable moments. The psychologist may be called on to present a lecture, teach a resident how to deal with a difficult patient in the office, provide feedback about a live patient encounter being observed on camera, or review a taped physician–patient encounter focusing on interviewing skills. Whatever format the teaching takes, primary care psychologists must ensure that the content is

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practical, understandable, usable, and relevant to the primary care provider. To accomplish this goal requires that psychologists maintain a keen eye focused on how what they are teaching fits into the role of the PCP. For example, the PCP is less inclined to benefit from teaching that focuses on esoteric aspects of a problem or even highly theoretical and detailed accounts of models that are far removed from the examining room. The primary care psychologist must disseminate information by translating it into a fashion and format that make it practical and useful. Otherwise, the PCP will view the information as useless and irrelevant. Researcher Opportunities for planning and conducting research in primary care abound but in many ways have remained relatively untapped by primary care psychologists. From an archival standpoint, there is undoubtedly a vast amount of knowledge and unidentified relationships sitting in the patient files of any PCP’s office, let alone the knowledge embedded within the myriad of day-to-day interactions between the PCP and patients. Primary care practice is undoubtedly an area that is ripe for research. As the specialty matures, we would expect to see more research in this area. Given the high volume of biopsychosocial problems and behavioral lifestyle factors found in primary care, the office provides a vast landscape for psychologists to ask and answer questions of direct relevance to patient care. Primary care psychologists in collaboration with physicians have a unique opportunity to develop and contribute to the scientific basis of primary care practice by capturing the unique aspects of this specialty, examining important processes and outcomes. Simply considering a 2 × 2 matrix alone that crosses presenting problems and stage of life, the possibilities for research appear endless. Also, the more recent focus on evidence-based medicine in primary care has done much to underscore the importance of research in guiding physician assessment and treatment decisions. We would propose that primary care psychologists consider several broad, although admittedly nonexhaustive, domains of possible research in primary care: patients, providers, provider–patient interactions, common behavioral health and medical problems, the biopsychosocial model, lifestyle habits, modalities of treatment, techniques (e.g., motivational interviewing), and clinical outcomes. However, despite the vast research opportunities, there are many significant challenges to conducting office-based research in primary care. These challenges stem from

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the fact that PCP offices are set up to provide care and generally not to conduct research per se. Psychologists may bring their knowledge of quantitative and qualitative research methods to this setting to address problems that PCPs find relevant, important, and related to their practice. Possible strategies for evaluating questions include case studies, single-case experimental designs, surveys, qualitative designs, mixed designs, and controlled trials. Challenges to conducting research, however, include time constraints, limited staff, competing clinical demands, unavailable funding to support research, lack of training in research methods, and failure to systematically enter data. The advent of electronic medical records may help make information more readily available and more easily accessed. Clinician Given that the focus of practice of primary care psychologists hinges on the ability to provide consultation, the role of being a direct service clinician is emphasized less. Nonetheless, the primary care psychologist may arrange to provide assessment and psychotherapeutic services in specific areas of specialization. Of course, the types of problems seen by the psychologist will most often be related to health or medical issues or variations of mental health problems seen in the medical office. Some examples will suffice. These examples are just a few actual case scenarios seen by the first author while working as a primary care psychologist in an integrated health-care setting for many years. In Case 1, the psychologist was called on to treat a patient whose phobia of contracting AIDS was precipitated by the diagnosis of her elderly single aunt, who acquired the virus through a blood transfusion. The patient was so fearful of acquiring the virus that she refused to visit her aunt, let alone provide any care for her. On rare occasions when she did visit, overwhelmed with anxiety, she wore a mask and on arriving home undressed in her garage and immediately placed her clothes in the washing machine. In Case 2, the psychologist worked with a 23year-old male patient with cancer and his wife surrounding his recurrence and his imminent death. The psychologist conducted weekly meetings with the couple and attended hospital rounds as well. As the patient deteriorated and he decided to pack it in, sessions were held with the couple in the patient’s private hospital room. With his permission, the psychologist and the family physician conjointly consulted with the patient’s parents and siblings about their unrealistic concerns related to the manner in which he would pass on. They feared he would suffocate and die gasping

desperately for air; the PCP was able to reassure them that this would not occur. To provide support, the psychologist was with the patient, physician, and family when the patient passed away. In Case 3, the psychologist assisted a general internist in identifying the source of his patient’s epigastric pain for which, despite multiple workups, no medical cause could be identified. In joint sessions, the psychologist helped to uncover the temporal relationship between the onset of the symptoms and the suicide of the patient’s sister by shotgun blast to the abdomen. The patient’s guilt stemmed from her unintentional failure to respond to several desperate phone calls from her sister before the victim took her own life. The patient found the sister lying in a pool of blood, and shortly thereafter, her reports of abdominal pain began. Her treatment plan shifted from referral to a gastroenterologist to grief counseling. In Case 4, a middle-aged male with a lifelong hearing impairment and suffering from irritable bowel syndrome was nonadherent in obtaining a colonoscopy follow-up related to a polyp discovered several years earlier. As it turned out, the description of the procedure by his physician (e.g., pumping air into the colon), coupled with ingesting the liquid test preparation that caused severe bowel cramping, triggered an intense panic reaction that undermined his effort to have the test. He mistakenly believed that the preparation had seriously worsened his condition and would cause his bowel to explode. In Case 5, the psychologist and general internist–family physician convened a meeting of a terminally ill patient (head of family) and his family about the family’s unrealistic initial wishes to keep his diagnosis a secret from him, his later request for a no code status, and his wish to die at home with his family around him. The psychologist and physician helped to facilitate a candid and emotionally wrenching discussion among the family members and the patient that ultimately led to his wishes being granted. In the end, the family was united in their belief that they allowed their dad to die with dignity. In Case 6, the psychologist facilitated a large group meeting of interns, residents, attendings, and hospital nursing staff at significant odds with each other over the decision of the attendings to hospitalize a mentally ill patient on a general medical floor. The patient, who had suffered a severe leg fracture, had been abandoned by family in the emergency room. During her hospital stay, the patient was extremely demanding and was accused by the nursing staff of self-inflicting her injury. The nursing staff retaliated by ignoring even the patient’s realistic requests and concerns. In a passive-aggressive maneuver, the nursing staff repeatedly called and awakened the resident on call and the attending about the patient over the course

Primary Care Psychology

of a few nights. This situation erupted into a whirlwind of negative emotions, polarizing the health-care providers and marginalizing the patient. The psychologist helped the group members to reframe this patient as a person in need, like any other patient with emotional distress, who possessed few, if any, coping skills and who was lacking any emotional support from her family. This strategy helped the group members to find the common ground among them, specifically the health of the patient, and to put their emotions aside and join together to assist the patient. In Case 7, the psychologist was asked to assist a young mother in the final stages of uterine cancer whose family could not accept her diagnosis, would not allow her to utter the word cancer, and who were unintentionally preventing her from accepting her imminent death and saying her final goodbyes. Working with this young woman to assert her wishes was instrumental in allowing her to express her final wishes to her family, to spend some final cherished quality time with her children and husband, and to assist the family in supporting her in facing her final journey. In Case 8, the psychologist and PCP spent several sessions meeting with an elderly male with COPD who was panicked about the thought of suffocating to death. The patient refused to be left alone at home, incessantly demanded that his wife sit next to him all day and night, and would not remove his oxygen mask for any period of time, despite the urgings of his PCP to do otherwise based on his blood gas analyses. Through a process of psychoeducation, relaxing visual imagery, cognitive restructuring, and graduated exposure with this patient, his wife was able to leave him at home alone during the day and ultimately for a weekend, which allowed her to obtain a much-needed respite. After 2 years, the patient passed away, but his quality of life and that of his wife had been positively affected in the interim. Case 9 involved a 53-year-old post–myocardial infarction patient whose guilt about having not taken better care of himself prior to this event overpowered him. Difficulty with adjustment resulted in his becoming a cardiac invalid. The psychologist and PCP counseled the patient in adjusting to his situation and over time systematically arranged for him to resume normal activities of daily living, including a normal sex life. In Case 10, the primary care psychologist and PCP worked closely with the widow of a man who had been terminally ill with severe cardiac disease. This patient smuggled a handgun into the hospital upon admission and shot himself in the head a day later, shortly after his wife left the room. The widow was haunted by feelings of responsibility for his death, fueled by her unrealistic belief that she should have been skilled in predicting this event. The providers spent many extended visits with her to

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provide grief counseling related to her ultimate acceptance of this terrible event. Administrator Primary care psychologists may hold administrative positions in medical settings and assume some administrative responsibilities through committee work and other assigned tasks. These tasks may include interviewing applicants for staff positions, negotiating and resolving interprofessional and intraprofessional staff conflict, developing programs, solving administrative problems, and conducting staff in-service programs. There are many reasons that psychologists may succeed in such roles. Many of these responsibilities are based on the unique skill sets that psychologists acquire in their training and bring to the primary care setting. Consultant As noted previously, primary care psychologists often assume the role of consultant, working closely with physicians to assist them in unraveling complex cases and other challenging problems. Given the sheer volume and diversity of problems, patients, complaints, and symptoms presented to PCPs during the course of an office session, there is little wonder why having a psychologist with whom to consult is important. Consultation, especially on-site consultation, is one major vehicle through which integration of services is achieved. James and Folen (2005) and Cos and colleagues (2010) have provided a thorough overview of the role of consultation in primary care. Several factors supporting this need relate to the types of problems seen in primary care and the load on the PCP to address these problems. PCPs confront mental health problems, psychophysiological problems, lifestyle habit problems, and medical problems mimicking psychological problems (Belar & Deardorff, 1995). The availability of psychological consultation allows the physician to address other concerns of a medical nature. Become Skilled in Addressing Common Problems A guiding principle in primary care is that what’s common is common, meaning that learning the base rates of certain problems may help to tip the scale in favor of identifying one problem over another. In other words, a patient presenting with a fever is more likely to be suffering from a common viral influenza during flu season as opposed to malaria. Likewise, a patient who has suffered a serious, sudden, and significant loss is more likely to be experiencing a reactive depression than suffering from hypothyroidism. That being said, the value of coordinating

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care between the PCP and psychologist is based on carefully attending to those factors that may suggest an organic cause. While rare, for example, a patient presenting with panic attacks may truly have pheochromocytoma. Primary care physicians and psychologists must be skilled in assessing and addressing the wide range of problems in primary care, working closely with each other, and collaborating with patients to rule in and rule out specific problems. These problems span the life cycle and encompass a wide variety of mental and medical issues confronting patients. Particularly challenging are the many and idiosyncratic ways in which problems may manifest themselves and become intertwined with somatic complaints. Of course, while not every psychologist would be capable of treating all problems or be realistically expected to do so (Haley et al., 1998), a consideration of the prevalence of mental health problems is important. A number of studies have pointed the way toward establishing the high volume of mental health issues seen in primary care, further establishing the need for primary care psychologists. Mental health difficulties are without a doubt among the top problems found in the panels of PCPs. Remarkably, almost 8 of 10 primary care offices offer some type of mental health service to their patients (Centers for Disease Control, 2007), with PCPs devoting an average of slightly more than 12 hours a week addressing psychiatric problems in their patients (Pruitt, Klapow, Epping-Jordan, & Dresselhaus, 1998). Over 80% of primary care providers indicated that they encounter emotional troubles among their patients in their daily practice. PCPs offer counseling to their patients, and some even set aside extended visits for doing so. Moreover, about 7 of every 10 prescriptions for psychotropics are written by PCPs (Beardsley, Gardocki, Larson, & Hildago, 1988; Pincus et al., 1998). Yet, despite these numbers, there is reason to believe that half of patients with psychiatric problems are overlooked by PCPs (U.S. Department of Health and Human Services, 1999). The likelihood of missing these diagnoses would be expected to be greatly reduced by the availability of a psychologist for immediate consultation. Be Prepared to Address Barriers To assume a role in primary care, psychologists must be fully prepared to address and overcome typical barriers in these settings. Common barriers include those falling within the practical-logistical and clinical-professional areas (DiTomasso, Golden, Morris, & Chiumento, 2010). Practical and logistical factors affecting the daily operation of the primary care setting include those related to

time pressures, high patient volumes, scheduling limits, timeliness of communication, and resistance to the model. Psychologists must be prepared to function in a fast-paced environment that is highly pressured with overwhelming numbers of patients and demands, scheduling conflicts, pressures to provide quick answers on limited information, and potential differences in weighing the importance of identified factors. These problems are in many ways diametrically opposed to the manner in which psychologists typically practice. Clinical and professional issues encompass diagnostic and treatment factors as well as role-related conflicts (DiTomasso, Golden, Morris, & Chiumento, 2010). In the clinical realm, primary care patients typically present with physical complaints in undifferentiated states and may resist psychological interpretations. These presentations are often in conflict with the typical self-referred patients psychologists see in their private offices, who may be more willing to entertain a psychological diagnosis and treatment. Other related barriers and challenges include issues related to role differences between physicians and psychologists or even conflicting interpretations of patient problems. Learn the Primary Care Culture and Customs As is true in other settings, psychologists must educate themselves about the unique aspects of primary care (Haley et al., 1998). Since Belar and Deardorff (1995) have already thoroughly elucidated these issues, we will summarize them briefly. Primary care psychologists essentially are involved in a mission through which they are engaging in sort of a public relations and education campaign. These efforts are designed to thoroughly educate our primary care colleagues through a variety of informal and formal mechanisms to appreciate what psychology has to offer. This is likely to be achieved through a series of personal and professional interactions during which they develop a relationship, attain respect for each other’s roles, and learn to appreciate what each has to offer. Attaining credibility is an important task and is likely to be achieved through being seen as a team player with an area of expertise and specific skills on which the physician can come to rely (Belar & Deardorff, 1995). Probably one of the most important factors is creating positive outcomes with patients, especially those who have presented a significant challenge for the physician. On a related note, learning about and respecting the roles, customs, and mores of the medical environment are important. Having a broad clinical base of experience upon which to rely, coupled

Primary Care Psychology

with the desire to assist and collaborate, is essential. Being available and accessible, providing relevant and clinically useful services, avoiding psychological jargon, and, most of all, demonstrating consistent follow-through and communication, are pivotal (Belar & Deardorff, 1995). Practice From an Empirically Based Perspective Today, in primary care medicine, there has been a revolution in thinking about patient care. Significant emphasis is placed on evidence-based medicine and reliance on data and demonstrated outcomes to determine diagnostic and treatment decisions. Primary care psychologists would do well to capitalize on the evidence base in psychology to guide and determine their decisions. Fortunately, there is a vast literature supporting the efficacy and effectiveness of treatments for many of the common problems seen in primary care (DiTomasso, Cahn, Cirilli, & Mochan, 2010). Primary care psychologists must recognize that absence of evidence for a given approach or technique does not necessarily mean that it is not potentially effective; all that it may mean is that it has yet to be sufficiently evaluated. Likewise, competent clinicians realize that a variety of factors may undermine the effectiveness of a treatment for which demonstrated evidence is available. Such factors, among a potential host of factors, may include an invalid case conceptualization, errors in treatment delivery, or even failure to adequately address barriers (DiTomasso, Cahn, Cirilli, & Mochan, 2010). In the absence of available empirically based strategies, primary care psychologists must offer the best possible interventions based on clinical experience. Ascertain Personal Fit Primary care psychologists must confront patient problems that are oftentimes out of the ordinary for typical psychological practice. These experiences may create unexpected reactions. Not every psychologist may be expected to tolerate the types of patients and problems seen in primary care. Dealing with patients who are suffering, deteriorating, maimed, deformed, dying, and in the throes of coping with devastating news can be quite disturbing and taxing, let alone challenging (Belar & Deardorff, 1995). The assumption here is that not every psychologist may be fit to serve the role of the primary care psychologist. Self-reflection about goodness of fit is important. COMMON PROBLEMS IN PRIMARY CARE In this next section, we focus on problems commonly confronted by PCPs and primary care psychologists.

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Introduction to Common Problems Given the scope of this chapter and the myriad of patients across the life span, it is impossible to capture all of the problems that may present in a primary care practice. Our goal is to whet the appetite of the reader and provide a sampling of relevant problems confronting psychologists in primary care. In a limited fashion, then, five common behavioral health problems and five common medical problems are discussed, with information provided about clinical manifestation and prevalence, assessment and diagnostic issues, potential treatments, and points of collaboration between primary care psychologists and PCPs. Behavioral Health Problems Depression It has been predicted that by the year 2020, depressive disorders will be globally a leading cause of disability (Miedema, Tatemichi, Thomas-Maclean, & Stoppard 2004). The research also supports that depressed patients are more likely to seek help from a PCP before accessing any mental health services (Del Piccolo, Saltini, & Zimmerman, 1998). Statistics suggest that between 50 and 70% of persons coming to primary care offices also suffer from a comorbid mental health problem, with a high incidence of depression and/or anxiety. At this time, it is estimated that PCPs provide 59% of the psychotropic medications for depression and anxiety (Cunningham, 2009; Mark, Levit, & Buck, 2009). Assessment strategies for diagnosing depression in primary care settings may be as simple as asking two questions: (1) In the past 2 weeks, have you felt down or depressed more days than not? (2) In the past 2 weeks, have you lost interest in previously pleasurable activities? (Whooley, Avins, Miranda, & Browner, 1997). In addition, it is important for the physician to gather information on the patient’s behavior, mood, mental health history, and family history to clinically diagnose depression. There are many brief measures used to clarify the type and level of depression. The Patient Health Questionnaire (PHQ), the Beck Depression Scale–Primary Care, and the Geriatric Depression Scale are a few of the most commonly used (Beck, Guth, Steer, & Ball, 1997; Spitzer, Kroenke, & Williams, 1999; Yesavage & Sheikh, 1986). It is also important to consider that persons often present with physical symptoms, including headaches, fatigue, gastrointestinal problems, and reports of undifferentiated pain symptoms that may be compounded by undiagnosed depression. To provide effective treatment for a patient with depression in a primary care setting, a number of factors should

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be considered. Many models for case conceptualization exist, but in this fast-paced setting, a consultation should include the presenting problems most critical to the patient at the present time (Freeman, Lightner, & Golden, 2010). Although there are always additional treatment factors to consider, these concerns might be more appropriate for longer-term treatment outside the primary care setting. This is not to underestimate the importance of brief and focused treatment methods, which generally include immediate strategies for problem solving, thus instilling hope in the patient. This collaboration between patient, physician, and psychologist is critical, often leading to better treatment adherence and the ability to more effectively manage the patient’s physical and mental health concerns (Freeman et al., 2010). Since the PCP is generally the first person a patient may consult when suffering from depression, it is important the symptoms not be missed. A brief consult with a primary care psychologist may result in the identification of depression, including the level of severity and functional impairment. A structured treatment plan may include medication, brief psychotherapy, and recommendations for lifestyle changes. When appropriate, the patient should be referred for more intensive treatment, with the PCP remaining aware of and informed of treatment progress (Freeman et al., 2010). Anxiety In addition to depression, anxiety is also one of the most common problems presenting in primary care settings. Unfortunately, anxiety disorders often remain undetected because there are many specific anxiety disorders with various symptom presentations and treatment considerations (Katon & Roy-Byrne, 2007). Statistics note that approximately 20 to 40% of patients present to the primary care setting with at least one anxiety disorder, 16.9% with an additional anxiety disorder, and 34.4% of patients have an additional Axis I disorder (Deacon, Lickel, & Abromawitz, 2008; Kroenke, Spitzer, Williams, Monahan, & Lowe, 2007). Studies report that panic disorder, generalized anxiety disorder, and posttraumatic stress disorder are the most common anxiety disorders in primary care (Deacon et al., 2008; Kroenke et al., 2007; Stein et al., 2004). In addition, patients with anxiety disorders utilize medical facilities at a 50% higher rate than the general population (Deacon et al., 2008; Kroenke et al., 2007; Marcinak, Lage, Landbloom, Dunayevich, & Bowman, 2004). Several diagnostic considerations should be made when attempting to assess an anxiety disorder in the primary care setting. Since patients have a tendency to report more

somatic complaints as opposed to direct reports of anxiety, the physician may be concerned with the possible presence of a serious medical disorder (Salas, Henninger, Stern, & Prout, 2010). Studies suggest that when patients report cognitive and emotional symptoms of anxiety rather than somatic complaints, they are more likely to be diagnosed with anxiety (Furedi, Rozsa, Zambori, & Szadoczky, 2003; Kessler, Lloyd, Lewis, & Gray, 1999). The high comorbidity rates of anxiety and depression have been reported in many studies (Belzer & Schneier, 2004; Brown, Schulberg, Madonia, Shear, & Houck, 1996; Durhan, Allan, & Hackett, 1997; Nisenson et al., 1998; Olfson, Fireman, & Weissman, 1997; Pollack, 2005; Roy-Byrne et al., 2000). This comorbidity results in more severe symptoms, greater levels of impairment, and a longer course of treatment. The early detection of anxiety may prevent the development of a secondary disorder of depression (Salas et al., 2010). Given the many types of anxiety disorders, it is important that the PCP be able to recognize the various presentations of each type. This assessment may be difficult with the limited time allotted for a patient visit. A primary care psychologist is able to utilize a brief clinical interview and simple screening measures with patients suspected to have an anxiety disorder. Three measures commonly used in primary care settings are the Beck Anxiety Inventory–Primary Care (BAI-PC), the Primary Care Evaluation of Mental Disorders (PRIME-MD), and the Generalized Anxiety Disorders Scale (GAD-7) (Beck et al., 1997; Spitzer et al., 1999; Spitzer, Kroenke, Williams, & Lowe, 2006). Each of these measures is a self-report scale with good reliability and validity, as well as sensitivity and specificity for the diagnosis of anxiety in primary care patients. When forming a case conceptualization of a patient with anxiety, it is important to consider individual differences, environmental stressors, and internal stressors. Anxiety disorders are manifested “when a perceived threat is in disproportion to an actual threat and disorders are maintained by patterns of attention bias, distorted information processing and limited or maladaptive coping strategies” (Salas et al., 2010, p. 378). Interventions should consider all of these factors and be designed to provide empirically based treatment for the specific anxiety disorder. A primary care psychologist should be competent to design a treatment plan utilizing relaxation, exposure practice, cognitive restructuring, and socials skills training as some of these empirically based treatments. In consultation with the primary care physician, the use of medication should be carefully reviewed and evaluated. Patient progress should be monitored, with attention paid to evaluating the course of the anxiety and the presence of comorbid problems and

Primary Care Psychology

to reviewing any changes in the patient’s quality of life and levels of satisfaction (Salas et al., 2010). In the collaborative treatment for the patient with an anxiety disorder, it is critical for providers to evaluate symptoms for both medical and psychological etiologies. Communication and effective time management are essential to ensure that patients view their providers as interested in the most optimal treatment outcomes. If the case is inappropriate for the brief primary care consultation model, referral to more specialized treatment may be needed (Salas et al., 2010). Substance Abuse The impact of substance abuse across the globe is overwhelming. According to the U.S. Department of Health and Human Services, National Institute of Health, and the National Institute on Drug Abuse (2008), illicit drug, alcohol, and tobacco use is extremely costly to society, with up to $500 billion lost in productivity; only 10.8% of the 23.6 million individuals over 12 years of age who are in need of treatment ever receive treatment. Primary care physicians in collaboration with primary care psychologists are prime resources for a response to these costly losses to people and society. Upon review of 18- to 25-year-olds, estimates of binge drinking rates are 41.8% and for heavy drinking, 14.7% (Substance Abuse and Mental Health Services Administration, 2008). It is estimated that PCPs see 15 to 20% of male patients and 5 to 10% of female patients who drink alcoholic beverages and who are at risk for or already experience medical, legal, or psychosocial problems associated with its use (Manwell, Fleming, Barry, & Johnson, 1998). Despite the fact that PCPs are often the first to see patients with substance abuse problems, as in the case of depression and anxiety, these patients are often undetected. This is largely a result of the sheer number of patients a physician must see to maintain a practice and often the lack of appropriate screening measures and referral sources at hand. The assessment process may be complicated for the primary care physician. Common knowledge suggests that patients may be poor historians and likely, as a result of shame or fear of being discovered, often withhold information when or if questioned. From the beginning of the process, it is critical for positive outcomes that the patient see collaboration between the PCP and the psychologist as a foundation to establish trust and a working alliance. It is always useful to access specific medical data and reports of family members or other persons close to the patient to complete an accurate assessment. Several brief screening measures are used in primary care settings, most

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commonly the CAGE-AID Questionnaire. If there is one positive answer, further screening is recommended. CAGE-AID (Brown & Rounds, 1995) 1. Have you felt you ought to Cut down on your drinking or drug abuse? 2. Have people Annoyed you by criticizing your drinking or drug use? 3. Have you ever felt bad or Guilty about your drinking or drug use? 4. Have you ever had a drink or used drugs the first thing in the morning to steady your nerves or to get rid of a hangover (Eye-opener)? In addition to the CAGE-AID screen, the Alcohol Use Disorders Identification Test (AUDIT; Babor, de la Fuente, Saunders, & Grant, 1992) is helpful and takes about two minutes to answer. The use of these screens in combination increases sensitivity to detect problem drinking and alcohol dependence. The use of specific laboratory tests helps to detect and monitor a substance abuse problem. Positive test results are helpful to motivate patients to make changes in their behaviors. Above all, in the assessment of potential substance abuse problems, it is imperative for the PCP and the psychologist to approach the patient with respect and patience, with consideration for the fear of being discovered that may fuel potential resistance toward attempting any change. While seeking to establish a conceptualization for a patient with a substance abuse problem, considerations should include appropriately identifying the purposes of the substance abuse (what does its use provide?), establishing the amount of substances used and the positive and negative consequences of the use, identifying the obstacles for change, and considering cognitive distortions or core beliefs present in the patient’s life (Dolan & Nam, 2010). In treatment planning, the patient’s readiness to change should be established. It is unlikely that patients who are in the precontemplation or contemplation stages will enter treatment (Brown, Melchior, Panter, Slaughter, & Huba, 2000). Common interventions for the treatment of substance abuse include motivational interviewing strategies, the 12-step programs, and cognitive-behavioral therapy. For the most optimal treatment, it is important that patients see themselves as critical to the process of change. It is helpful to identify a problem list for change and when and what specific treatments will be most beneficial to the patient. PCP, psychologist, and patient must be coordinated and engaged to establish strategies for therapy, support services, and possible use of psychopharmacology. This

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integration offers optimal chances for recovery (Dolan & Nam, 2010). Eating Disorders Eating disorders are the deadliest of psychiatric disorders, and only depression and anxiety disorders have greater prevalence (Hudson, Hiripi, Pope, & Kessler, 2007). Eating disorders include AN (anorexia nervosa), BN (bulimia nervosa), EDNOS (Eating Disorders Not Otherwise Specified), and BED (binge eating disorder), which is slated for inclusion as an Axis I disorder in DSM 5 (Walsh, 2007). Eating disorders are associated with high morbidity and mortality, particularly among young women (Keel et al., 2003). In addition to being one of the most lethal psychiatric disorders, eating disorders as a whole are also among the most prevalent, with the lifetime prevalence estimated at 0.5 to 1.0% for AN, 3% for BN, and 3.3% for BED (Hudson et al., 2007). Given the high prevalence and morbidity of eating disorders, their relevance to primary care is clear. Primary care physicians (including pediatricians) are on the front lines for detection, as most cases of eating disorders are first identified in primary care (Striegel-Moore et al., 2008). While PCPs are perhaps uniquely positioned to first identify eating disorders, detection of disordered eating in the primary care setting is poor, and fully half of all cases go undetected in this setting (Becker, Burwell, Gilman, Herzog, & Hamburg, 2002). Having psychologists on site available to screen or diagnose eating disorders may significantly improve this problem. One of the particular challenges in the assessment of eating disorders in primary care is that most sufferers, particularly in the case of AN, do not commonly complain of disordered eating and may, in fact, even vehemently deny such symptomatology, out of shame or in an attempt to maintain the disorder (Pritts & Susman, 2003). Thus, the primary care psychologist must be suspicious of such a diagnosis in the face of vehement denials in at-risk patients when he or she observes specific symptoms or complaints. Presenting physical symptoms can include “fatigue, dizziness, low energy, amenorrhea, weight loss or gain, constipation, bloating, abdominal discomfort, heartburn, sore throat, palpitations, polyuria, polydipsia, and insomnia” (Williams, Goodie, & Motsinger, 2008, p. 187). If an eating disorder is suspected, the psychologist should screen the patient for other psychological disorders (and suicidality), given that comorbidity is the rule rather than the exception in this population (see Hudson et al., 2007). When major depression is diagnosed as comorbid with the eating disorder, treatment of the depression before

the eating disorder (unless medically urgent) is typically advised (Fairburn, 2008). The psychologist should be particularly thorough when assessing for anxiety disorders, as obsessive-compulsive disorder (OCD) in particular has a very high concordance rate (40%) with AN (Matsunaga et al., 1999). Given that a thorough psychiatric evaluation for mental disorders including eating disorders may be time-intensive, having a primary care psychologist on site has a clear advantage for patient care, as such thorough evaluation is obviously impractical for a PCP. For clinicians who suspect an eating disorder, brief screening measures are available for use in primary care and may be completed in the waiting room. The Eating Attitudes Test (EAT-26) has been widely used, is empirically supported, and evaluates underlying eating disordered psychopathology (Garner, Olmsted, Bohr, & Garfinkel, 1982). Additionally, the SCOFF is a screening tool for eating disorders designed for primary care; it is an acronym for these five questions (Morgan, Reid, & Lacey, 1999): Do you make yourself Sick because you feel uncomfortably full? Do you worry you have lost Control over how much you eat? Have you recently lost more than One stone (14 pounds) in a 3-month period? Do you believe yourself to be Fat when others say you are too thin? Would you say that Food dominates your life? (p. 1467)

When considering a patient’s initial level of care, it is the expert consensus among treatment professionals that weight should not be considered as the sole criterion; rather, the psychologist and PCP should thoroughly evaluate and consider the patient’s clinical and social picture (American Psychiatric Association, 2006). The available levels of care from least restrictive to most restrictive are outpatient care, intensive outpatient, partial hospitalization day programs, residential treatment centers, and inpatient hospitalization. The following factors should be comprehensively assessed when determining the appropriate level of care: medical stability, suicidality, weight as a percentage of healthy body weight, motivation for treatment, comorbid disorders, structure needed for any necessary eating or weight gain, ability to control compulsive exercising, severity of purging behavior, environmental stress, and geographic availability (American Psychiatric Association, 2006; Cahn & McFillin, 2010). Practice guidelines also establish recommended criteria for inpatient hospitalization (see American Psychiatric Association, 2006). Eating disorders are a clear fit for collaborative treatment in primary care, given that the medical and psychological components of the disorder are inextricable and each is pivotal to successful treatment. Once a tentative diagnosis

Primary Care Psychology

of an eating disorder is made, the primary care psychologist may choose to treat the patient in collaboration with the physician and family members. Eating disorder treatment manuals are available, including Fairburn’s 2008 “transdiagnostic” treatment manual and cognitive-behavior therapy designed for outpatient treatment of any eating disorder, including BED (Fairburn, Cooper, Shafran, & Wilson, 2008). The psychologist can provide therapy while the physician can monitor weight and blood work on a regular basis, while communicating treatment progress. Alternatively, the primary care psychologist may elect to refer the patient to an eating disorder specialist psychologist, particularly with advanced or long-standing eating disorder illnesses or for primary care treatment failures. Nonadherence Nonadherence to medical advice is a major problem for patients across the life span in primary care settings. Failure to follow a recommended regimen from a physician may result in a range of consequences, from the exacerbation of a medical condition, organ damage, toxic medicine complications, overall poor health outcomes, and, at times, even death. In addition to these patient consequences, the increase in medical costs and overutilization of medical care must be considered. Research suggests that upwards of $100 billion are spent yearly in the United States for the problems of nonadherence, approximately $77 billion of which is due to unfilled prescriptions (Mahoney, Ansell, Fleming, & Butterworth, 2008; McCarthy, 1998; Osterberg & Blaschke, 2005). Since the consequences of this problem are generally unknown by patients and therefore very difficult to manage, collaboration between the PCP and primary care psychologist is essential. Assessment for nonadherence requires knowledge of the specific manner in which it is manifested for a particular patient (DiTomasso, Chiumento, Singer, & Bullock, 2010). For example, any patient with a medical problem may “forget” to take medication for many reasons; however, the causes and consequences of this behavior vary widely among patients. The primary care psychologist should begin by a thorough review of the patient’s medical chart and discuss potential causal factors for nonadherence with the PCP and the patient. This includes, but is not limited to, behaviors, thoughts, attitudes, beliefs, situational factors and other relevant considerations. In their class text, Meichenbaum and Turk (1987) review several important domains and factors for the assessment process. These factors are related to patient variables, the health-care setting, the disease itself, and often the complexity of a medical regimen. In addition to these factors,

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Burke and Dunbar-Jacob (1995) review the importance of evaluating the patient’s understanding of the treatment plan. This provides the opportunity for implementing a treatment plan for nonadherence. Once these factors are identified, a treatment plan including extensive education of the patient and other social and family supports may be used. Belar and Deardorff’s (2009) biopsychosocial assessment template is critical for developing hypotheses and a comprehensive treatment plan. Many case conceptualization models are helpful for a patient with nonadherence. Persons’ (1989) model integrates various factors to formulate a treatment plan, including identifying information, chief complaint, problem list, hypothesized mechanism, relation of mechanism to problem, precipitant of current problems, origins of central problem, treatment plan, and predicted obstacles to treatment. The identification of these factors takes time. The PCP and the primary care psychologist need to establish a respectful working alliance with the patient to enable the patient to feel a greater sense of trust with the total treatment process. As treatment progresses, the patient’s ability to change must be closely monitored to ensure treatment is not rushed. Motivational interviewing and its stepwise approach to change for medical patients enables patients to see the meaning of the changes for them, to determine how the prescribed changes are important to them, to lead to the realization that change is really possible for them, and to believe that this change will make a difference (Rollnick, Miller, & Butler, 2008). These variables are important to avoid significant obstacles for treatment. A critical factor for improving nonadherence is to develop a nonjudgmental, collaborative alliance. The treatment of nonadherence is difficult and requires collaboration with the patient, PCP, family, and primary care psychologist. Implementation of attainable goals, problem-solving strategies, monitoring, modeling, habit changing, and contracting are all proven strategies for the treatment of nonadherence (DiTomasso, Chiumento, Singer, & Bullock, 2010).

Common Medical Problems Type 2 Diabetes Type 2 diabetes is one of the most frequently diagnosed chronic illnesses in primary care settings (DiTomasso, Boyle, Finkelstein, & Morris, 2010; Williams & Pickup, 2004; Zazworsky, Bolin, & Gaubeca, 2006). Approximately 20.8 million children and adults in America live with type 2 diabetes, an amount that is expected to double

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by 2025. Meanwhile, more than 150 million people have been diagnosed with type 2 diabetes worldwide (DiTomasso, Boyle, et al., 2010; Williams & Pickup, 2004). The diagnosis of diabetes is typically made by PCPs using empirically supported diagnostic tools (DiTomasso, Boyle, et al., 2010). Psychologists working in collaborative care settings should be aware of these methods of assessment. Assessment helps practitioners identify patient barriers to meeting treatment goals. An understanding of the biopsychosocial context for each patient is necessary for challenges to be delineated. Target areas include ongoing health maintenance, skills and knowledge about diabetes, feelings of self-efficacy and self-advocacy, thought processes and distortions, psychological diagnoses, emotional distress, and relational support. Common problems stemming from deficits in these target areas include lack of self-care behaviors, nonadherence to treatment, mood disorders, eating disorders, smoking, substance use, lack of social support, and sedentary lifestyle (DiTomasso, Boyle, et al., 2010). Treatment should begin with a comprehensive case conceptualization that describes patient goals, strengths, and weaknesses (DiTomasso, Boyle et al., 2010). Then, a treatment plan should be created, based on the individual needs of the patient. Empirically based treatment protocols should be used, with particular emphasis on those that have been shown to work with patients reporting similar problems. Coping skills treatments are recommended for stress and anxiety related to the diabetes diagnosis (DiTomasso, Boyle, et al., 2010; Gonder-Frederick, Cox, & Ritterband, 2002). Behaviorally based plans that involve setting goals, reinforcement strategies, and contingency contracts with the patient are recommended to increase patient adherence. Cognitive-behavioral therapy has drawn empirical support for the treatment of depression in patients with diabetes. Blood glucose awareness training, a combination of cognitive and behavioral strategies for self-care and decision making, may assist patients in need of more education about diabetes (DiTomasso, Boyle, et al., 2010). Education about diet and exercise may assist the patient with overall control of the disease necessary to change lifestyle habits. Progressive muscle relaxation has been indicated for patients reporting high blood sugar levels. Newly diagnosed patients may benefit from a referral to a mental health practitioner to assess for possible psychological disorders and their ability to cope with disease and maintain healthy lifestyle habits. Additional screenings may be indicated later in treatment after medical intervention for instances where HgbA1c levels are above 8%.

This may serve as a mechanism for discussion and problem solving regarding barriers to treatment (DiTomasso, Boyle, et al., 2010). Collaboration between the physician and psychologist helps with the overall management goals of the patient. Barriers to treatment may be discussed in consultation with the psychologist to assist with compliance and communication issues between the patient and physician. Also, the psychologist may advocate the importance of rapport and trust between the physician and patient, necessary for the success of treatment. Patients are more likely to rely on empathic health-care providers. In addition, the psychologist is obligated to update the physician on a regular basis about the patient’s progress in therapy (DiTomasso, Boyle, et al., 2010). Collaboration with family members is also beneficial for the patient’s overall adherence and self-efficacy in treatment (DiTomasso, Boyle, et al., 2010). The attitudes and behaviors of family members often affect the patient’s ability to comply with the treatment protocol. The psychologist and physician may educate the patient’s family about the importance of food choices and reinforcement for adherence to the treatment plan. Family sessions may also be helpful, particularly when excess stress exists at home. These sessions, including both the psychologist and physician, focus on helping family members adjust to having a loved one with diabetes (DiTomasso, Boyle, et al., 2010; Feifer & Tansman, 1998). Hypertension Hypertension, the silent killer, is a major public health problem, with estimates that the patient population suffering from this common medical problem will increase over the next few years. Hypertension is commonly found in patients in primary care settings; however, because they are asymptomatic, this problem is at times discovered by chance. The Joint National Committee on Prevention, Detection, Evaluation and Treatment of High Blood pressure (U.S. Department of Health and Human Services, 2003) reports that hypertension affects 50 million people in the United States, and the American Heart Association estimates that hypertension was a primary or contributing disease in 326,000 deaths in the year 2006 (Lloyd-Jones, et al., 2010). Since the exact etiology of hypertension is unknown, it is considered either primary (unknown etiology) or secondary (resulting from a number of causes). Many factors may contribute to the onset of hypertension, including genetic factors, environmental factors, and psychosocial factors, such as stress, personality, and behavior. These

Primary Care Psychology

factors have been shown to play a role in its onset (American Heart Association, 2011). Although medication is the treatment of choice, this is often complicated by nonadherence issues. Complications of uncontrolled hypertension are serious and can lead to death or disability due to a myriad of heart problems and/or cerebral hemorrhage. The value of the primary care psychologist for comprehensive assessment and treatment planning for patients suffering from hypertension is evident (DiTomasso, Chiumento, & Morris, 2010). For assessment, the patient is medically evaluated by the PCP, with the diagnosis established according to standard criteria. It is the responsibility of the primary care psychologist to review all the additional psychosocial factors and to identify all the potentially threatening lifestyle choices that may exacerbate the problem. Belar & Deardorff (2009) propose a comprehensive biopsychosocial assessment for patients in various medical settings, and this approach is well suited for the patient with hypertension. The primary care psychologist should review each domain and assess for various factors. DiTomasso, Chiumento, and Morris (2010) have noted: In the physical realm, the clinician should consider factors such as the age, gender, race, and weight of the patient . . . . In the cognitive realm, the clinician should examine variables related to patient knowledge and understanding of the disease, health beliefs and conceptions, and self-efficacy. In the social arena, the availability and degree of social support is important to consider, as well as specific cultural factors that may contribute to the patient’s understanding and beliefs about hypertension and dietary considerations. Habits including diet, physical activity, eating patterns, and sodium, alcohol, caffeine, nicotine, and coping strategies are also important to consider. In the psychological and affective areas, a review of potential issues such as anxiety, depression, anger, hostility, dysfunctional thinking, and stress levels should be examined. (p. 530)

The use of standardized measures within each domain, such as the Millon Behavior Medicine Diagnostic, the Beck Depression Inventory, the Beck Anxiety Inventory, and the CAGE-AID can be very useful (Beck et al., 1997; Beck & Steer, 1990; Brown & Rounds, 1995; Millon, 1982). There are a number of factors to consider in treatment for a patient with hypertension. Since hypertension is asymptomatic, the patient should be monitored regularly to check his or her blood pressure to provide an opportunity for recognizing the relationship between efforts to change lifestyle patterns and ability to manage the hypertension. Patients should consequently have regular follow-up with

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their physician and be encouraged to monitor, record, and provide their physician with an ongoing log of their blood pressure. The side effects of medication should be evaluated, and any questions or clarifications brought to the attention of the physician. A patient who is encouraged by a brief consultation with a primary care psychologist may be more likely to communicate these concerns to the physician. The identification and treatment of lifestyle habits that affect blood pressure must be considered. The primary care psychologist is able to help the patient with cognitive and behavioral lifestyle changes. Treatment should also include the presence of social support, as the behavioral changes that hypertensive patients often need to make in their lives are substantial, and social support can be a critical ingredient in successful management (DiTomasso, Chiumento, & Morris, 2010). For a primary care psychologist working in collaboration with the PCP to ensure optimal patient outcomes, several factors should be considered. Education is important for adherence, and this may be provided, including the complexities of hypertension and the risks and necessity of comprehensive treatment. It is essential that patients with hypertension be followed regularly and closely, with a special focus on target areas and adherence. Obesity Obesity is a common problem in primary care. Recent epidemiological data indicate that approximately 34% of adult Americans over age 20 are obese and another 34% are overweight, a rate that has skyrocketed since 1980 (Flegal, Carroll, Ogden, & Curtin, 2010). The escalating and high prevalence of obesity has been called an epidemic, and reducing national obesity has become a federal initiative. While the etiology of obesity is multifactorial, environmental and genetic contributions are clear. Although approximately 40% of weight is attributable to genetics (Bouchard, 1997), there obviously has been no corresponding genetic transformation in the population, certainly not commensurate with the rising rates of obesity in this country. The modern, supersized environment that incentivizes overeating through the low cost and high availability of calorie-dense, nutrient-empty foods has been clearly implicated. While public health change may be beyond the scope of the individual primary care physician or psychologist, psychologists can focus patients to work on those aspects of obesity that are within the patient’s control. Whereas a patient’s weight is easily assessed, the cause(s) for the obesity can be more difficult to establish. In addition to being a risk factor for later serious medical problems, obesity is also comorbid with many

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psychiatric and medical conditions. For example, obesity can be implicated in major depression, binge eating disorder, or both. A primary care psychologist might take a timeline and history to disentangle the predisposing, precipitating, and perpetuating factors and determine whether an integrated or sequential treatment approach for the problems would be most prudent. Importantly, many medications, such as prednisone, and psychiatric drugs, such as clozapine and olanzapine, commonly cause significant weight gain, and patients need to be apprised of this fact in making informed treatment decisions. Simpkin-Silverman and Wing (1997) advocate initiating the conversation on weight by using the 5A intervention: Assess BMI, Ask permission to discuss overweight, Advise weight loss in a way personalized to the patient, Assist patient in selecting an appropriate method or program for weight loss, and Arrange for subsequent meetings to review progress (see also Tsai, Carvajal, Egner, & Wadden, 2010). In the case of children suffering from or at risk of obesity, family members can be enlisted to provide information and corroboration on dietary and exercise habits. Obesity is a notoriously chronic and tenacious condition, and attempts to cure it have been termed, by one internationally recognized obesity expert, a “humbling experience” (Brownell, 2010). While short-term success has been achieved and documented again and again, success at long-term follow-up has been much harder to come by. One behavioral treatment success story (of weight loss followed by inevitable relapse) has been the largescale diabetes prevention program (DPP), which demonstrated the superiority of intensive lifestyle modification to placebo and metformin for those with prediabetes (Knowler et al., 2002). Knowler and colleagues showed that after an average treatment duration of 2.8 years, those receiving the lifestyle modification intervention had lost an average of 5.6 kg (12.3 lbs). While 12.3 pounds may not be a dramatic weight loss for those suffering from obesity, such losses were associated with significantly lower rates of diabetes onset (Knowler et al., 2002). Notably, this study did not assess follow-up data after treatment withdrawal; such investigation is currently underway. Clearly, on-site psychologists are in a good position to collaborate with PCPs in providing psychological interventions, in both individual and group formats, geared toward lifestyle modification (e.g., LEARN program for weight control; Brownell, 2004). Additionally, psychologists can be a resource for referrals to community weight loss and exercise programs and to obesity specialists and offer follow-up with patients to discuss progress and obstacles

as part of an integrated and comprehensive treatment plan. Psychologists may also collaborate with PCPs to provide preventive intervention for those patients at risk of obesity, before it becomes an even more complicated and humbling problem to treat. Pain Complaints of pain are a common problem in all medical settings and particularly in the primary care setting. According to Breuer, Cruciani, and Portenoy (2010), 52% of patients seen by PCPs are seeking treatment for pain. The PCP is often the first contact for a person experiencing pain, since most already have an established relationship. Presentations range from acute pain to chronic pain and require a thorough assessment with a specific course of treatment to limit the number of patients who move from an acute pain disorder to a chronic pain disorder. The costs of chronic pain disorders to the patient and society are staggering, upwards of $61 billion annually in the United States alone (National Center for Health Statistics, 2006; Stewart, Ricci, Chee, Morganstein, & Lipton, 2003). According to the National Center for Health Statistics (2006), up to 57% of American adults report experiencing chronic pain within the past year, with 62% of individuals being in pain for more than 1 year and 40% of these patients noting constant pain. The most common types of pain reported in primary care settings are musculoskeletal pain, gastrointestinal problems, headaches, and other general unspecified complaints. Although the PCP will investigate the potential medical cause of the pain symptoms, if it is undifferentiated, the PCP is likely to offer medication to deal with the pain symptoms. This will address the immediate symptom, but the patient will remain in distress, compromised in activities of daily living, and lacking appropriate strategies for coping with the pain on a long-term basis. The presence of the primary care psychologist in collaboration with the PCP will allow for the additional biopsychosocial assessment and treatment needed for an optimal outcome. In the assessment process for acute pain, a basic clinical interview and simple, reliable self-report measures often generate enough information to establish a plan for treatment. When the pain moves from the acute phase to a more chronic presentation, a multidimensional approach to assessment should be employed. This comprehensive approach involves a more thorough assessment of the biological, cognitive, affective, behavioral, and social factors contributing to the patient’s pain complaints (Belar & Deardorff, 2009). This model has received greater attention and more widespread acceptance in the last several

Primary Care Psychology

years, since the assessment of pain is now considered one of the five vital signs, according to guidelines published by The Joint Commission (Phillips, 2000). Also, because mood disorders are 2 to 7 times more prevalent in patients who suffer from chronic pain, the assessment process should clearly investigate the potential presence of these comorbid problems (Tunks, Crook, & Weir, 2008). Gatchel (2005) proposes a brief checklist to assess behavioral and psychosocial issues that may affect treatment, including the potential for noncompliance, disincentives for improvement, medical problems, and other negative influences that would compromise the treatment process. The Mini–Mental Status Examination (Folstein & Folstein, 2001) is helpful to determine if the patient is disoriented or cognitively impaired. Following are some common self-report measures used in primary care settings: the McGill Pain Questionnaire–Short Form (MPQ-SF; Melzack, 1987), Pain Disability Index (PDI; Tait, Pollard, Margolis, Duckro, & Krause, 1987), Tampa Scale of Kinesiophobia (TSK; Kori, Miller, & Todd, 1990), Pain Catastrophizing Scale (PCS; Sullivan, Bishop & Pivick, 1995), Chronic Pain Coping Inventory (CPCI; Jensen, Turner, Romano, & Strom, 1995), Multidimensional Pain Inventory (MPI; Kerns, Turk, & Rudy, 1985), Beck Depression Inventory (BDI; Beck, Ward, Mendelson, Mock, & Erbaugh, 1961), Beck Hopelessness Scale (BHS; Beck, Weissman, Lester, & Trexler, 1974), and Beck Anxiety Inventory (BAI; Beck, Epstein, Brown, & Steer, 1988). It is reported that across 32 subscales of all of these measures, seven factors capture the important constructs for a thorough assessment of pain: pain and disability, pain description, affective distress, positive coping, negative coping, support, and activity (Davidson, Tripp, Fabrigar, & Davidson, 2008). This is a limited review of the many measures used to assess patients with pain complaints (Golden, Gatchel, & Glassman, 2010). Before a treatment plan is developed for patients with chronic pain, Gatchel (2005) recommends determining where a patient may be on a scale from acute to chronic pain. Patients may vary from Stage 1 to 3, with each stage rising to a greater level of disability. Stage 1 is more the acute pain stage, where patients are prompted by anxiety and worry regarding the pain and appropriately seek medical interventions. When pain persists beyond 2 to 4 months, further complications develop in Stage 2, when the patient may exhibit learned helplessness, depression, anger, and/or substance abuse problems with the potential of secondary gain. Patients reaching Stage 3 have progressed to the point where severe disability puts them at

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risk for permanent disability (Golden et al., 2010). To avoid this progression, PCPs and primary care psychologists should work closely with the patient and family members to treat all aspects of the pain problem. Evidencebased pain management generally includes a combination of behavioral, cognitive, and psychoeducational methods in treatment. Many studies report the overall success of cognitive-behavioral interventions for patients suffering from chronic pain (Okifuji & Ackerlind, 2007; Scascighini, Toma, Dober-Spielman, & Sprott, 2008; Turk, Vierck, Scarbrough, Crofford, & Rudin, 2008). Primary care psychologists should work closely in collaboration with PCPs for positive outcomes for patients with pain complaints. Working to empower patients throughout the treatment process, with communication between all providers and the patient, while developing a realistic treatment plan with clearly defined goals, will lead to optimal success (Golden et al., 2010). Insomnia Insomnia is the leading sleep complaint seen in primary care settings and occurs in approximately 30% of all patients seen in primary care (American Sleep Association, 2010; Buysse et al., 2011; Patinen & Huben, 2005). Due to the common occurrence of insomnia in primary care, it is pertinent for practitioners to understand the components of assessment, diagnosis, treatment, and patient barriers (Rosenfield, Ramsay, Cahn, & Pellegrino, 2010). Primary insomnia is diagnosed as trouble falling asleep or staying asleep for at least 1 month, causing impaired functioning in day-to-day activities. For this diagnosis, the disturbed sleep pattern must not be directly related to the physiological effects of a substance or general medical condition (American Psychiatric Association, 2000; American Sleep Association, 2010). Like other medical issues, insomnia can be influenced by co-occurring conditions, such as mental or medical diagnoses. Insomnia from this etiology is known as secondary insomnia (American Sleep Association, 2010). The duration of symptoms can further differentiate insomnia into two types. Acute insomnia is defined as irregular sleep patterns for a few weeks, whereas chronic insomnia is diagnosed for those suffering from an inability to sleep for at least three nights a week, over the course of at least 1 month (American Sleep Association, 2010). Insomnia can also be a precursor to mental health conditions, especially mood disorders (Ford & Kamerow, 1989). Diagnosed medical disorders and prescribed medications may interrupt the ability to sleep. In addition, a number of psychiatric disorders have been associated with

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insomnia, including mood disorders, substance abuse, and ADHD (Ford & Kamerow; Rosenfield et al., 2010). Comprehensive assessment is crucial to identify specific sleep patterns and sleep-related behaviors unique to each patient (Rosenfield et al., 2010). Assessment should include structured interviews, self-report questionnaires, psychological testing, sleep logs, polysomnography (PSG), and actigraphy. The American Sleep Association web site has a downloadable database for clinicians (www.sleepassociation.com). A variety of patient handouts and diagnostic tools are also available (American Sleep Association, 2010; Rosenfield et al., 2010). Perlis, Jungquist, Smith, and Posner (2008) created a list of assessments appropriate for primary care settings. Psychological testing is recommended to rule out comorbidities, The SCID-I is useful for the diagnosis of Axis I clinical disorders, while the SCID-II may be used for the diagnosis of Axis II disorders (First, Gibbon, Spitzer, Williams, & Benjamin, 1997; First, Spitzer, Gibbon, & Williams, 2002). Should these measurements prove extraordinarily costly for primary care settings, the BHS, BAI, and BDI-II may be utilized for such purposes (Beck & Steer, 1990; Beck, Steer, & Brown, 1996; Beck, Weisman, Lester, & Trexler, 1974; Rosenfield et al., 2010). The diathesis stress model can be used to approach the predisposing, precipitating, and perpetuating factors associated with insomnia (Perlis et al., 2008; Rosenfield et al., 2010). First, predisposing factors make individuals vulnerable to precipitating events. The extent to which this occurs varies from case to case. Predisposing factors are those that are inherited genetically or are predisposed to biologically. Examples of common predisposing factors for insomnia include a family history of anxiety, depression, or insomnia (Perlis et al., 2008; Rosenfield et al., 2010). Next, precipitating factors may interact with predisposing factors and lead to insomnia. Precipitating factors include mental health issues, such as depression and anxiety, as well as physical health issues, such as illness and pain. Social stressors within interpersonal relationships may also have this effect (Perlis et al., 2008; Rosenfield et al., 2010). Finally, perpetuating factors may cause temporary insomnia to become chronic (Perlis et al., 2008; Rosenfield et al., 2010). These factors typically stem from maladaptive coping strategies, such as an overallotment of time in bed, partaking in non-sleep-related activities in bed, and conditioned arousal. Poor diet choices and a sedentary lifestyle also perpetuate insomnia (Perlis et al., 2008; Rosenfield et al., 2010).

Empirically supported treatment options for insomnia include pharmacotherapy and cognitive-behavioral interventions (Rosenfield et al., 2010). Pharmacotherapy is the most widely used treatment for insomnia among primary care providers (Chesson et al., 1999). Medication is a time-sensitive option, as results of pharmacotherapy are typically seen within 1 week; however, at 4 to 8 weeks, this treatment is equally efficacious to cognitivebehavioral therapy (CBT). In addition, the side effects and incidence of chronic insomnia raise issues about cost and risks for use of pharmacotherapy treatments in primary care settings (Rosenfield et al., 2010). CBT interventions for insomnia have been found helpful in as few as two sessions in primary care settings (Edinger & Sampson, 2003; Rosenfield et al., 2010). Both stimulus control and sleep restriction have empirical support. Other CBT interventions include sleep hygiene education and relaxation and breathing training. The use of white noise devices has been found particularly helpful for light sleepers (Rosenfield et al., 2010). Insomnia occurs within a fully biopsychosocial context. Due to this, it is important to provide collaborative care between the primary care provider and the psychologist. By doing so, empirically supported diagnostic and intervention modalities may be used to ensure that the patient receives the best possible care (Rosenfield et al., 2010).

FUTURE DIRECTIONS In this chapter, we have traced the historical evolution of primary care psychology as a critical specialty of the future. That being said, we also offer the idea that the future is upon us now. Psychologists must capitalize on both the current wave of interest and need in the healthcare forum and rise above the demands and challenges confronting the health-care delivery system today. Primary care psychology is a critical hinge on which the future hangs and is quickly establishing itself as one of the most critical components, if not the most critical component, on which sound health and wellness rest. For much too long have psychologists remained behind the front lines in the war on disease and illness. Psychologists must seek their proper place at the forefront of the health-care reform movement, working side by side with PCPs and other primary care providers supplying invaluable services to defeat problems undermining both the physical and behavioral health of society. It is virtually impossible to find a health problem for which behavioral factors, broadly speaking, are not implicated in some

Primary Care Psychology

way in its onset, precipitation, exacerbation, or maintenance. Firmly established, overlearned, and long-standing patterns of thinking, believing, assuming, feeling, reacting, and behaving often provide a direct, if not indirect, pathway to morbidity and mortality in any given person. Equipped with the theories, principles, measures, models, and tools that define the field of psychology, primary care psychologists have an opportunity to revolutionize how health care is framed, packaged, and delivered. Primary care psychology is the key to unraveling and addressing this problem. Interprofessional collaboration, integration of services, preparation of competent psychological primary care specialists, and the continued development and application of innovative models of health care, including the “medical home” (Mirabito & Berry, 2010), will be critical foundations upon which effective and high-quality health care can be erected. The ongoing development, testing, and establishment of an empirical body of evidence specifically rooted in primary care, firmly grounded in a biopsychosocial paradigm, and continuously informed by the high-quality science of clinical health psychology and behavioral medicine will be necessary in attaining the goal of effective health care in the offices of PCPs. Moreover, knowledge about the unique and powerful impact of sociocultural and societal factors in health and wellness must be harnessed and addressed as a means of reducing health disparities across ethnic groups in society. Unique ethical, professional, and legal factors must be carefully elucidated and considered in day-to-day clinical practice of psychologists with physicians. Finally, primary care psychologists must be prepared to welcome outcomes that question and test the added value of the services they offer and be open to empirically based findings that will help to shape the delivery of services in a continuous cycle of quality improvement. REFERENCES American Heart Association. (2011). Understand your risk for high blood pressure. Retrieved from www.heart.org/HEARTORG/Condit ions/HighBloodPressure/UnderstandYourRiskforHighBloodPressure/ Understand-Your-Risk-for-High-Blood-Pressure_UCM_002052_Arti cle.jsp American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. American Psychiatric Association (2006). American Psychiatric Association practice guidelines for the treatment of patients with eating disorders (3rd ed.). Washington, DC: Author. American Psychological Association: Public Policy Office. (2000). Psychology is a behavioral and mental health profession. Retrieved from www.apa.org/about/gr/issues/health-care/profession.aspx

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Rollnick, S., Miller, W. R., & Butler, C. C. (2008). Motivational interviewing in health care: Helping patients change behavior. New York, NY: Guilford Press. Rosenfield, B., Ramsay, J. R., Cahn, S. C., & Pellegrino, P. J. (2010). Cognitive-behavioral therapy for insomnia: Evidence-based treatments and encouraging innovations for primary care. In R. A. DiTomasso, B. A. Golden, & H. J. Morris (Eds.), Handbook of cognitivebehavioral approaches in primary care (pp. 699–724). New York, NY: Springer. Roy-Byrne, P. P., Stang, P., Wittchen, H. U., Ustun, B., Walters, E., & Kessler, R. C. (2000). Lifetime panic–depression comorbidity in the national comorbidity survey: Association with symptoms impairment, course, and help-seeking. British Journal of Psychiatry, 176, 229–235. Salas, J. A., Henninger, E. A., Stern, R. K., & Prout, M. F. (2010). Anxiety disorders in primary care. In R. A. DiTomasso, B. A. Golden, & H. J. Morris (Eds.), Handbook of cognitive-behavioral approaches in primary care (pp. 369–397). New York, NY: Springer. Scascighini, L., Toma, V., Dober-Spielmann, S., & Sprott, H. (2008). Multidisciplinary treatment for chronic pain: A systematic review of interventions and outcomes. Rheumatology, 47 (5), 670–678. Schulberg, H. C., & Burns, B. J. (1998). Mental disorders in primary care: Epidemiologic, diagnostic, and treatment research directions. Archives of Internal Medicine, 10, 79–87. Schulte, T. J., Isely, E., Link, N., Shealy, C. N., & Winfrey, L. L. (2004). General practice, primary care, and health service psychology: Concepts, competencies and the combined integrated model. Journal of Clinical Psychology, 60, 1011–1025. Simpkin-Silverman, L. R., & Wing, R. R. (1997). Management of obesity in primary care. Obesity Research, 5 (6), 603–612. Spitzer, R. L., Kroenke, K., & Williams, J. (1999). Validation and utility of a self-report version of PRIME-MD: The PHQ primary care study. Journal of the American Medical Association, 282, 1737–1744. Spitzer, R. L., Kroenke, K., Williams, J. B. W., & Lowe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD7. Archives of Internal Medicine, 166, 1092–1097. St. Peter, R. F., Reed, M. C., Kemper, P., & Blumenthal, D. (1999). Changes in the scope of care provided by primary care physicians. New England Journal of Medicine, 341, 1980–1985. Stein, M. B., Sherbourne, C. D., Craske, M. G., Means-Christensen, A., Bystritsky, A., Katon, W., . . . Roy-Byrne, P. P. (2004). Quality of care for primary care patients with anxiety disorders. American Journal of Psychiatry, 161, 2230–2237. Retrieved from http://ajp .psychiatryonline.org/cgi/content/full/161/12/2230 Stewart, W. F., Ricci, J. A., Chee, E., Morganstein, D., & Lipton, R. (2003). Lost productive time and cost due to common pain conditions in the US workforce. Journal of the American Medical Association, 290 (18), 2443–2454. Striegel-Moore, R. H., DeBar, L., Wilson, G. T., Dickerson, J., Rosselli, F., Perrin, N. F., . . Kraemer, H. C. (2008). Health services use in eating disorders. Psychological Medicine, 38 (10), 1465–1474 Substance Abuse and Mental Health Services Administration. (2008). Results from the 2007 national survey on drug use and health: National findings. Retrieved from www.oas.samhsa.gov Sullivan, M. J. L., Bishop, S. R., & Pivick, J. (1995). The pain catastrophizing scale: Development and validation. Psychological Assessment, 7 (4), 524–532. Tait, R. C., Pollard, C. A., Margolis, R. B., Duckro, P. N., & Krause, S. J. (1987). The pain disability index: Psychometric and validity data. Archives of Physical Medicine & Rehabilitation, 68 (7), 438–441. Taylor, R. B. (2003). Family medicine: Now and future practice. In R. B. Taylor (Ed.), A. K. David, S. A. Fields, D. M. Philips, & J. E. Scherger (Assoc. Eds.), Family medicine: Principles and practice. New York, NY: Springer.

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CHAPTER 23

Sociocultural Aspects of Health Psychology KEITH E. WHITFIELD, GERDI WEIDNER, CHRISTOPHER L. EDWARDS, AND ROLAND THORPE

INTRODUCTION 538 RACE-ETHNICITY 539 BEHAVIORAL TREATMENT AND PREVENTION APPROACHES FOR ETHNIC MINORITIES 544 GENDER 545 PSYCHOSOCIAL FACTORS 547 BIOBEHAVIORAL FACTORS 548

GENDER, TREATMENT, AND PREVENTION APPROACHES 549 SES 550 FUTURE RESEARCH DIRECTIONS 553 CONCLUSION 554 REFERENCES 554

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how differences in diet related to acculturation affect the incidence of chronic illnesses such as cardiovascular disease (CVD) among Hispanics who migrate to this country, compared with incidence among Hispanics who live in the country of origin. In some cases, this means reexamining how well-studied biobehavioral relationships that contribute to increased incidence of disease may operate differently in certain people, who may be adversely affected or protected because of social or contextual forces (Edwards, Applegate, & Robinson, 2004). The National Institutes of Health (NIH) has responded by supporting research on sociodemographic factors that influence health. A series of offices and institutes have been opened over the past 10 to 20 years that address the increased diversity of our nation as well as broaden the scientific perspective on health and disease. The National Center for Minority Health and Health Disparities, formed in 2001, became an institute in 2010. Although this center is the product of more than 20 years of advancing knowledge about the factors that create health disparities in our society, there is still a need for better understanding the role of society, genes, environment, and economic conditions that prevent us from creating a health-neutral society. Responsive to these initiatives, our purpose in this chapter is to provide a selective overview of recent health psychology research on sociodemographically diverse populations, with a focus on ethnicity, gender, and socioeconomic status (Govil, Weidner, Merritt-Worden, &

The composition of the United States is quickly becoming more demographically diverse, particularly with regard to the number of people of color and how racial distributions are changing (e.g., Logan, 2003; Macera, Armstead, & Anderson, 2000; Reardon, Farrell, Matthews, O’Sullivan, Bischoff, & Firebaugh, 2009). Hispanic-White and Asian-White segregation levels have increased, while Black-White segregation has shown decline in some ways (Reardon et al., 2009). Racial segregation has been identified as one of the poignant indicators driving health disparities (Diez Roux, 2003; Williams & Collins, 2001). Not only have there been geographic changes in where people live and with whom they live but also there have been drastic changes in employment patterns among women since the 1950s. For example, the participation of U.S. women in the workforce has risen from 34% in 1950 to 60% in 1997 (Wagener et al., 1997). This social and economic diversity offers new and unique opportunities to examine how sociodemographic characteristics, health, and behavior are interconnected and creates new challenges for the improvement of health. For example, one might examine Preparation of this chapter was supported by the Alexandervon-Humboldt Foundation (GW); German Academic Exchange Service (GW); German Research Foundation (DFG, grant number MA 155/75-1 to GW).

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Ornish, 2009). We also provide some suggestions for future directions.

RACE-ETHNICITY There are similarities and differences across ethnic groups in the prevalence of health, disease, and health behaviors. In this first section, we review recent reports on mortality and morbidity, major behavioral risk factors, and major biobehavioral risk factors among Blacks, Asian Americans, Hispanics, and Native Americans separately. We conclude this section with a brief review of behavioral treatment and prevention programs. Health Status One of the most striking demographic characteristics in health statistics continues to be the difference between Blacks and Whites. The age- and gender-adjusted death rate from all causes is significantly higher for Blacks than for Whites (Geronimus, Bound, & Colen, 2011; U.S. Department of Health and Human Services [DHHS], 1995a; Williams, 1999). This difference in death rates persists until age 85 (U.S. DHHS, 1995b). In 2005, the Black life expectancy was 73.2 years compared to 78.3 years for their White counterparts, and this difference was even greater among men (Kung, Hoyert, Xu, & Murphy, 2008). The gap in health status between Blacks and Whites has, for the most part, not narrowed in the past 50 years and is wider for some indicators, such as infant mortality (e.g., Carmichael & Iyasu, 1998). The literature on this topic clearly demonstrates that social disadvantage, including marginalization through racial residential segregation and discrimination, is linked to poor physical health (e.g., Adler & Newman, 2002; Geronimus, Bound, Waidmann, Hillemeier, & Burns, 1996; Macinko & Elo, 2009). One of the major factors in this life expectancy gap is mortality from cardiovascular diseases. Over the past 40 years, despite declines in age-standardized CVD and stroke death rates, heart disease, stroke, and related vascular deaths continue to be the leading causes of morbidity and mortality in the United States (Lloyd-Jones, Adams, et al., 2010; Lloyd-Jones, Hong, et al., 2010). Although there has been a decrease in levels of cholesterol, blood pressure, and smoking and wider use of effective treatments among persons with existing CVD, the almost epidemic trends in prevalence of obesity and diabetes and the increase of older adults who are at the highest risk for CVD contributed to the substantial burden of CVD and

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stroke burden (Ford et al., 2007). Some of the most recent data show that there have been improvements in death rates overall. However, difference in death rates between men and women increased slightly between the period of 2006 and 2007, and while the Black-White life expectancy gap decreased by 0.02, it remained high at 4.8 years (Xu, Kochanek, Murphy, & Tejada-Vera, 2010). There are some limited positive signs for the health of minorities. For example, McWilliams, Meara, Zaslavsky, and Ayanian (2009) found differences between Black or Hispanic and White adults did not significantly change from 1999 to 2006 for any of four measures of disease control (age- and sex-adjusted rates of blood pressure control, mean systolic blood pressure, glycemic control, and mean hemoglobin A1c levels), except differences in rates of glycemic control between Hispanic and White adults, which broadened over that time period. Deaths associated with CVD arise from a myriad of risk factors that include elevated blood pressure, cigarette smoking, hypercholesterolimia, excess body weight, sedentary lifestyle, environmental contaminants, and diabetes, all of which are influenced to varying degrees by behavioral factors (e.g., Deckert, Winkler, Paltiel, Razum, & Becher, 2010; Gillum, 2002; Manson et al., 1991; Raupach, Schafer, Konstantinides, & Andreas, 2006; Stamler, Stamler, & Neaton, 1993; Willet et al., 1995; Winkleby, Kraemer, Ahn, & Varady, 1998). The clustering (comorbidity) of CVD risk factors in Blacks appears to play an important role in excess mortality from CVD (Potts & Thomas, 1999; Sharma, Malarcher, Giles, & Myers, 2004). The literature on mortality among Asians and Pacific Islanders (API) suggests that, overall, this group has one of the best health profiles in the United States (Hall, Xu, & Chertow, 2011). Heart disease and cancer are leading causes of death for adult API. Hoyert and Kung (1997) found great variation in the leading causes of deaths by age among the API subgroups, which included Samoan, Hawaiian, Asian Indian, Korean, and Japanese. They also found that age-adjusted death rates were the greatest and life expectancy was the lowest for Samoan and Hawaiian populations (Hoyert & Kung, 1997). Prevalence of diabetes has been found to be high among Hawaiians, which suggests that other API populations may share similar susceptibility to diabetes (Grandinetti et al., 1998). Although most of the research on ethnic minorities and CVD risk factors has focused on Blacks, there is ample evidence of higher prevalence rates of excess weight, stroke, diabetes, untreated hypertension, cigarette smoking, and LDL-cholesterol in Mexican Americans than in Whites (Kuczmarski, Flegal, Cambell, & Johnson, 1994;

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Lloyd-Jones, Hong, et al., 2010; Sundquist & Winkleby, 1999). Ford, Giles, and Deitz (2002) found that in a comparison to Blacks and Whites, Mexican American men had the highest age-adjusted prevalence of hyperglycemia, and Mexican American women had the highest age-adjusted prevalence of hypertriglyceridemia, low HDL cholesterol concentration, and hyperglycemia. In a large national cohort study comparing all-cause and cause-specific mortality among Hispanics and non-Hispanic groups, Hispanics showed lower mortality (Liao et al., 1998), particularly when family income was accounted for in the analysis (Sorlie, Backlund, Johnson, & Rogot, 1993). When age differences were taken into account, Mexican American men and women also had elevated blood pressure rates compared with Whites (National Center for Health Statistics [NCHS], 2000). As in other populations, Hispanics experience higher age-adjusted stroke rates than Whites (e.g., Karter et al., 1998; Lloyd-Jones, Adams, et al., 2010). Sacco and colleagues (1998) found that Hispanics had a twofold increase in stroke incidence compared with Whites. Furthermore, Haan and Weldon (1996) found that among communitydwelling elderly Hispanics and Whites, Hispanics experienced greater levels of disability from stroke, which they attribute to lower SES, and higher prevalence of other disabling conditions. In addition, older Mexican Americans with diabetes mellitus are at high risk for development of lower body disability over time (Snih et al., 2005). American Indians and Alaskan Natives (AI–ANs) represent less than 1% of the total U.S. population and are culturally diverse, comprising many tribes—of which 557 are federally recognized (MMWR, 1998a, 1998b). Mortality data reveal excess overall mortality among AI–AN, as well as excesses for specific causes of death, including accidents, diabetes, liver disease, pneumonia/influenza, suicide, homicide, and tuberculosis (Mahoney & Michalek, 1998). For example, in a recent analysis of data from NHANES II, age-specific prevalence of diabetes in Alaska Natives was similar to that in U.S. Whites but was the highest reported to date (Ebbesson et al., 1998). In contrast, there is almost a deficit of deaths noted for heart disease, cancer, and HIV infections in this population. Major Behavioral Risk and Protective Factors Behavior has significant implications for the incidence and prevalence of health. Tobacco use, diet, physical activity, sexual behavior, alcohol abuse, and social support represent major behavioral factors in the health of populations.

Tobacco Use In the general population, tobacco consumption slowed down when the deleterious health effects of cigarette smoking were made public in the 1950s. This is perhaps due to changes in policies rather than people quitting smoking because they heard that it was harming their health (Weidner & Kendel, 2010). Cigarette smoking prevalence reaches a peak between the ages of 20 and 40 among both men and women and then decreases in later adulthood, but across all ages, smoking prevalence is higher among males than among females. Recent research shows that the overall incidence rates for all racial and ethnic populations combined decreased by 0.8% per year from 1999 through 2005 in both sexes combined, by 1.8% per year from 2001 through 2005 in men, and by 0.6% per year from 1998 through 2005 in women (Jemal et al., 2008). However, rates of smoking initiation among White adolescents have been found to be higher than those among Black adolescents (Anderson & Burns, 2000). Among adults, smoking is more prevalent among Blacks than among Whites (Escobedo & Peddicord, 1996; Garfinkel, 1997) and causes a serious health burden. Even among minority groups, Blacks experience the most significant health burden from smoking (MMWR, 1998a, 1998b). Blacks also tend to overestimate tobacco use among their peers (Edwards et al., 2008) and to use tobacco in response to perceived ethnic and racial harassment (Bennett, Wolin, Robinson, Fowler, & Edwards, 2005), and their use patterns may be genetically mediated (Whitfield et al., 2007). Relatively little is known about Asian American tobacco and alcohol use patterns. The little that is known suggests that Chinese use less tobacco than people from other cultures. For example, a study by Thridandam, Fong, Jang, Louie, and Forst (1998) indicated that the prevalence of both tobacco and alcohol use was lower for San Francisco’s Chinese population than for the general population. Recent research on self-reported nicotine dependence has shown that Hispanics were less likely than Whites to smoke on a daily basis, to smoke at least 15 cigarettes a day, and, among daily smokers, to smoke within 30 minutes of awakening (Navarro, 1996). Of interest, acculturation appears to play an important role in the incidence of smoking among Hispanics. Navarro (1996) also found that Hispanics from households in which English was a second language (less acculturated) were less likely to be daily smokers or to smoke more than 15 cigarettes a day than were those who were acculturated (those from households in which English was the primary language). Unusually high rates of smokeless tobacco use have been found in some AI–AN populations (Spangler et al.,

Sociocultural Aspects of Health Psychology

1999). Kimball, Goldberg, and Oberle (1996) found that cigarette smoking was more prevalent among American Indian men and women than it was in the general population in the same geographic area. Of the American Indians interviewed, 43% of men and 54% of women reported that they currently smoked (Kimball et al., 1996). However, on closer examination of their smoking habits, they tended to smoke much less heavily than smokers in the general population Diet The age-adjusted prevalence of overweight adults continues to be higher for Black women (53%) than for White women (34%) (NCHS, 2000). The prevalence of obesity among Black women has reached epidemic proportions (Flynn & Fitzgibbon, 1998). A number of studies attributed the high rate of obesity in women, in part, to differences in body image and suggested that Black women are more likely to view an overweight body as attractive, but the results are still not completely clear because of divergent methodologies (see Flynn & Fitzgibbon, 1998). Nutritional status, which contributes to obesity, among minority populations may be adversely affected by a number of factors, including chronic illness (Pells et al., 2005) associated either directly or indirectly with aging (Buchowski & Sun, 1996). There are complicated scenarios related to diet and acculturation among Asian Americans. For example, acculturation has been found to affect dietary patterns of Korean Americans (Lee, Sobal, & Frongillo, 1999). Korean Americans who were more acculturated ate more “typically American foods” such as oranges, low-fat milk, bagels, tomatoes, and bread, mostly during breakfast meals. In contrast, there may be lost health benefits for Asian Americans who opt to change to mainstream American diets rather than adhere to more traditional Asian diets. For example, there is evidence that Japanese diets may reduce the prevalence of diabetes (Huang et al., 1996) and that soy intake among Asians may be related to a reduction in the risk of breast cancer (Wu et al., 1998). In relation to eating habits, Hispanics have been found to be more likely than Whites to report inadequate intake of vegetables, problems with teeth or dentures that limited the kinds and amounts of food eaten, difficulty preparing meals, and lack of money needed to buy food (Marshall et al., 1999). Hispanic women also reported more nutritional risk factors than Hispanic men; however, other indicators suggested that Hispanic men may be at higher risk of nutritional deficiency (Marshall et al., 1999).

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As in other ethnic groups, diet has been implicated as a primary risk factor in the development of chronic diseases among American Indian tribes. There is concern that the dietary transition from traditional foods to more market (store-bought) foods among indigenous populations will bring about a rise in diet-related chronic disease (Whiting & Mackenzie, 1998). Foods like bacon, sausage, and fried bread and potatoes are high-fat foods frequently consumed by AI–AN populations (Ballew et al., 1997; Harnack, Story, & Rock, 1999). As in many other ethnic groups, researchers have found low levels of consumption of fruits and vegetables (Ballew et al., 1997; Harnack et al., 1999). The lack of fruit and vegetable consumption is thought to be due to barriers such as cost, availability, and quality (Harnack et al., 1999). Physical Activity In minority samples, physical activity has been linked to decreased risk for diabetes (Clark, 1997; Collins-McNeil, Holston, Edwards, Benbow, & Ford, 2009; Manson et al, 1991; Ransdell & Wells, 1998), CVD (Yanek et al., 1998), and stroke (Goslar et al., 1997; Sacco et al., 2001). Conversely, there is also evidence to suggest that Blacks do not exercise at the same rates as Whites (Sallis, Zakarian, Hovell, & Hofstetter, 1996; Young, Miller, Wilder, Yanek, & Becker, 1998). Women of color, women over 40, and women without a college education have been shown in one study (Ransdell & Wells, 1998) to participate the least in leisure time physical activity. This may be due, in part, to differences in body perception and visual cues suggesting the need to regulate weight. For example, in a study by Neff, Sargent, McKeown, Jackson, and Valois (1997), White adolescents were more likely than Black adolescents to perceive themselves as overweight. This difference in perception could translate into unhealthy weight-management practices during adulthood that affect long-term consequences for health (Neff et al., 1997). As in other minority groups, there is evidence that physical activity serves as a protective factor against chronic illness among Asian Americans from research on Japanese American men who participated in the Honolulu Heart Program. In summary, research from this study suggested that physical activity is associated inversely with incident diabetes, CHD morbidity, and mortality (Burchfiel, Curb, et al., 1995; Burchfiel, Sharp, et al., 1995; Rodriguez et al., 1994). Although research has clearly demonstrated that physical activity is inversely related to the development of chronic illnesses, the data on the level of physical activity among Hispanics are mixed. Some evidence suggests

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that Hispanics are more physically active than other ethnic groups. For example, in a telephone study of Black, Hispanic, American Indian–Alaskan Native, and White women age 40 years and older, Hispanic women were more likely to have high physical activity scores than the other racial/ethnic groups investigated (Eyler et al., 1999). However, the larger body of evidence suggests that Hispanics do not differ from the low levels reported in other ethnic groups. For example, data from the National Health and Nutrition Examination Survey (NHANES) showed rates of inactivity were greater for women, older persons, non-Hispanic Blacks, and Mexican Americans (Crespo, Keteyian, Heath, & Sempos, 1996). Like other risk factors for chronic illness among Native Americans, the significant heterogeneity and unique aspects of individual tribes produce variability in the results on physical activity reported in the current literature. However, most of the previous research suggested that Native Americans do not participate in physical activity at levels sufficient to protect against the development of CVD risk factors, obesity, and non-insulin-dependent diabetes mellitus (NIDDM) (Adler, Boyko, Schraer, & Murphy, 1996; de Groot & van Staveren, 1995; Harnack et al., 1999; Yurgalevitch et al., 1998). This lack of physical activity has been ascribed to a change from traditional activities and lifestyle that required greater energy expenditure (Adler et al., 1996; Ravussin, Valencia, Esparza, Bennett, & Schulz, 1994). Sexual Behavior Young Blacks are emerging as a group at significant risk for contracting HIV (Hall et al., 2008; Maxwell, Bastani, & Warda, 1999). Data from the National Health and Social Life Survey (Laumann & Youm, 1999) indicated that Blacks were almost 5 times more likely to be infected by sexually transmitted diseases (STDs) than other racialethnic groups. Cummings, Battle, Barker, and Krasnovsky (1999) found that 64% of Black women surveyed did not express AIDS-related worry. Their results indicated that many Black women were not protecting themselves by using condoms or by careful partner selection. Nationally, the incidence of AIDS is increasing at a higher rate among API American men who have sex with men than among Whites (Choi, Yep, Kumekawa, 1998). It has been reported that the rate of new AIDS cases among API men who have sex with men increased by 55% from 1989 (4.0%) to 1995 (6.2%) (Sy, Chng, Choi, & Wong, 1998). However, most of the discussions have focused on the relatively low prevalence of APIs with AIDS in the United States (Sy, Chng, Choi, Simon, & Wong, 1998).

Underestimating the risk of HIV may increase unsafe sex practices and subsequently increase AIDS cases in this population. There appear to be increasing trends of HIV/AIDS among Hispanic populations. The trends seem to be accounted for by unprotected sex, unprotected sex with injected-drug users, reported heterosexual contact with an HIV-infected partner whose risk was not specified, and an increase in the cases among foreign-born Hispanics (e.g., Diaz, & Klevens, 1997; Klevens, Diaz, Fleming, Mays, & Frey, 1999; Neal, Fleming, Green, & Ward, 1997). Of all modes of exposure to HIV, heterosexual contact has increased the most rapidly (Neal et al., 1997). Blacks and Hispanics account for three quarters of all AIDS cases that could be attributed to heterosexual contact between 1988 and 1995 (Neal et al., 1997). Culture and acculturation appear to be important factors in HIV/AIDS among Hispanics. There appear to be differences in behavioral risks for HIV/AIDS among Hispanics, depending on the subgroup and cultural factors of subgroups. For example, Diaz and Klevens (1997) found in a Hispanic sample that Puerto Rican men were more likely to have injected drugs than were men from Central America. In contrast, they also found that male-male sex was the most common mode of exposure to HIV except among Puerto Ricans. Results from research by Hines and Caetano (1998) indicated that less-acculturated Hispanic men and women were more likely to engage in risky sexual behavior than those who were more acculturated. There is relatively little literature on sexual behavior, STDs, and HIV/AIDS among AI–AN populations. Fewer than 1% of the AIDS cases reported to the Centers for Disease Control and Prevention through December 1997 (1,783 or 0.3%) occurred in AI–AN populations (MMWR, 1998c). Although the number of AIDS cases is low among this population, there is concern that the future could bring significant increases in prevalence. The primary sources of increases in the number of AIDS cases are predicted to occur from increases in nontraditional life styles and sexual partnerships of AI–AN women and White men who are injection drug users (Fenaughty et al., 1998). Alcohol Abuse Alcohol-related problems are strong predictors of intimate partner violence among Blacks (Cunradi, Caetano, Clark, & Schafer, 1999). Although there are fairly high rates of abstention from alcohol use among Blacks, there are also high rates of abuse. Using data from two nationwide probability samples of U.S. households taken between 1984 and 1995, Caetano and Clark (1999) found

Sociocultural Aspects of Health Psychology

that the rates of frequent heavy drinking and alcoholrelated problems have remained especially high among Black and Hispanic men. In a study by Black, Rabins, and McGuire (1998), Blacks with a current or past alcohol disorder were 7.5 times more likely than others to die during a 28-month follow-up period. Cheung (1993) suggested that a review of the literature finds consistently low levels of alcohol consumption and drinking problems among the Chinese in America. Previous research has attempted to explain these low levels using two theories: (1) A physiological explanation attributes the light alcohol use among the Chinese to their high propensity to flush, which protects them from heavy drinking; and (2) a cultural explanation suggests Chinese cultural values emphasize moderation and self-restraint, which discourages drinking to the point of drunkenness. Cheung’s (1993) review of the existing research showed that neither theory seemed to provide an adequate explanation of the current empirical findings. In general, Hispanics continue to be more at risk than Whites for developing a number of alcohol-related problems (Caetano, 1997). Prevalence rates of past heavy drinking among Mexican American and Puerto Rican males are approximately 3 times higher than rates reported for nonHispanic male populations (Lee, Markides, & Ray, 1997). Research on trends in frequent heavy drinking and alcoholrelated problems in Hispanics have shown relatively stable patterns for women but increased rates for men over the same period (Caetano & Clark, 1999). Research on alcohol use among Hispanics has indicated that less-acculturated men drank more than those who were more acculturated, but among women, the opposite was true (Hines & Caetano, 1998). Contact with Whites has caused dramatic increases in use and changes in the function of alcoholic beverages among AI–AN societies (Abbott, 1996). Acute heavy drinking has been found to be prevalent among Native Americans. In a study by Kimball and colleagues (1996) of Northwest Indians, 40% of men and 33% of women reported acute heavy drinking for the previous month. Although much has been made about high rates of alcoholism among Native Americans, the rate of alcohol metabolism has been shown to be the same as in Whites (Gill, Eagle Elk, Liu, & Deitrich, 1999). In addition, there is evidence that older urban American Indians are not different from other older people with respect to consumption of alcohol (Barker & Kramer, 1996). Why, then, is there such prevalence of alcoholism among Native Americans? Further research is necessary to address the issue of Native American drinking and to gather a clearer picture for the

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creation and implementation of culturally sensitive and effective prevention programs. Social Support Social factors such as social support (e.g., Cohen & Syme, 1985; Collins-McNeil et al., 2009; Dressler, DosSantos, & Viteri, 1986; House, Landis, & Umberson, 1988; Strogatz & James, 1986) and religious participation (Livingston, Levine, & Moore, 1991) have been found to be important predictors of health outcomes. Health is also adversely influenced by psychological factors such as hostility (Barefoot et al., 1991), anger (Gentry, 1985), perceived stress (McLeod, & Kessler, 1990), and stresscoping styles (James, Hartnett, & Kalsbeek, 1983). Some previous research has suggested that there are associations between health and social support in Blacks (e.g., Jackson, 1989; Jackson, Antonucci, & Gibson, 1990; James, 1984). From this research, there are at least three conclusions that can be drawn: (1) Social disorganization is related to elevated stroke mortality rates, (2) individuals within cohesive families are at reduced risk for elevated blood pressure, and (3) social ties and support play a positive role in reducing elevated blood pressure (Jackson et al., 1990; James, 1984). Further examination of the role of social support in health is needed to better understand the role of others in the development and prevention of disease. The role of social support as a factor in health among minorities is also evident among Asian Americans. In an examination of the nature of social support for Asian American and White women following breast cancer treatment, Wellisch and colleagues (1999) found differences in the size, mode, and perceived adequacy of social support that favored Whites. This is not to imply that social support does not promote health among Asian Americans but that social support does not appear to be as prevalent for Asian Americans as for Whites. Although low levels of social support have been related to CVD mortality among Blacks, little is known about the role of social support among Mexican Americans. In the Corpus Christi Heart Study, survival following myocardial infarction was greater for those with high or medium social support than for those with low social support. Specifically for Mexican Americans, the relative risk of mortality was 3.38 (95% confidence interval, 1.73–6.62) for those with low social support (Farmer et al., 1996). Furthermore, informal social support networks, such as extended families and civic clubs, were seen as more helpful for Blacks and Hispanics than for Whites in assisting cancer patients with continuing treatment (Guidry, Aday, Zhang, & Winn, 1997).

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Similar to finding in other ethnic minorities, available research seems to suggest that social support is related to health among AI–AN populations. A study of Navajo Indian family support (family characteristics and the amount of family support the patient perceived) at the time of hospitalization showed greater perceived support was associated with longer length of stay (Williams, Boyce, & Wright, 1993). These results provided support for the notion that social systems gain importance not from structure but from function (Williams et al., 1993). The context in which Native Americans live also contributes to the amount of social support. Hodge, Frederickes, and Kipnis (1996) found that urban Indians reported receiving less social support than rural Indians. Social support research on Native Americans has shown that social support is related to health behaviors. Spangler, Bell, Dignan, and Michielutte (1997) found that cigarette smoking was related to separated or divorced status and low church participation. In contrast, they also found that smokeless tobacco use was associated with widowed marital status and with having a large number of friends. Major Biobehavioral Risk Factors The most studied biobehavioral-risk factor for poor health among Blacks is cardiovascular reactivity. Clark, Moore, and Adams (1998) showed that both low-density lipoprotein cholesterol (LDL) and high-density lipoprotein cholesterol (HDL-C) were significant predictors of blood pressure responses in a sample of Black college students. They also found a positive relationship of total serum cholesterol and low-density lipoprotein cholesterol (LDLC) to stroke volume, contractile force, and blood pressure reactivity. These findings suggest that cardiovascular reactivity to stress may be a new risk factor for heart and vascular diseases (Clark et al., 1998). Recent research has suggested that neighborhoods and SES act as risk factors for stress reactivity for Blacks. Lower family SES and lower neighborhood SES have been found to produce greater cardiovascular reactivity to laboratory stressors in Blacks (Gump, Matthews, & Raikkonen, 1999; Jackson, Treiber, Turner, Davis, & Strong, 1999). The impact of stress on health is also a biobehavioral risk factor in Asian Americans. Research has suggested that most newly arrived Asian Americans experience acculturative stress in areas of spoken English, employment, and limited formal education (Nwadiora & McAdoo, 1996). The impact of this stress on biomedical indicators of health has yet to be examined empirically. There is emerging evidence that acculturative stress among Hispanics may affect health. Ontiveros, Miller,

Markides, and Espino (1999) found that higher levels of education and language acculturation were risk factors for having a stroke among Mexican Americans. They interpreted their findings to suggest that Mexican Americans who are less acculturated are healthier and that acculturation may increase stroke morbidity and mortality. Goslar and colleagues (1997) found that among Mexican American women there was a relationship between acculturation and higher systolic and diastolic blood pressure that was independent of diet, body composition, and physical activity. Poor socioeconomic conditions, lack of education, and cultural barriers contribute to the enduring poor health status of AI–AN. Although health care is free to many in this population, it is limited, inadequately funded, or has a limited focus on preventative care (Joe, 1996). For example, only 50% of AI–AN have had their cholesterol checked within the past 2 years (NCHS, 2000). One of the major challenges for Native Americans is to balance their cultural values with the larger American societal values. The difficult interpersonal struggle to create this balance causes some to commit suicide. Suicide rates have been found to correlate positively with acculturation stress and negatively with traditional integration (e.g., Lester, 1999).

BEHAVIORAL TREATMENT AND PREVENTION APPROACHES FOR ETHNIC MINORITIES There are myriad protective factors associated with the reduction of health problems. There is growing evidence that behavioral interventions could significantly reduce the mortality and morbidity burden experienced by minority populations. Reducing morbidity through health promotion and disease prevention could both improve the quality of life and lessen the burden on the health-care system. The challenge is to create interventions that include information about nutrition and promote physical activity in culturally appropriate ways (see Buchowski & Sun, 1996). In an effort to reduce chronic illness among ethnic minorities, behavioral treatment and prevention programs are being developed. There are difficulties common to all interventions: language, culture, and interactions between ethnicity and SES. Difficulties due to language differences include the translation of materials from another language while maintaining the meaning and significance of the message being communicated. Differences in culture preclude being able to simply apply successful treatment and prevention programs across minority groups. The interaction between ethnicity and SES has been addressed

Sociocultural Aspects of Health Psychology

by attempting to account for acculturation, but it may also drive the need for ethnic and SES group-specific programs. Smoking Interventions Successful smoking cessation exists, but little is known about the psychosocial factors that influence smoking cessation among ethnic minorities (U.S. DHHS, 1998). Smokers from ethnic minority groups report having little knowledge of the health effects of smoking or of techniques to quit smoking (U.S. DHHS, 1998). Although more than just information is needed to produce a behavioral change as complex as quitting smoking, many researchers believe that information on the health consequences of smoking is a critical motivating factor in a smoking cessation program (U.S. DHHS, 1998). There are numerous areas of investigation and changes to be made to create culturally appropriate smoking interventions. These changes include (a) directing efforts toward promoting cessation through proven behavioral and pharmacological approaches, (b) making new smoking prevention and cessation programs tailored for minorities by focusing on smoking as a family-wide issue, (c) identifying sources of cultural stress and adding stress reduction techniques to smoking cessation programs, (d) focusing on group-specific attitudes and expectancies about quitting smoking, and (e) addressing the effect of acculturation in shaping attitudes and expectancies (particularly among Hispanics; Ahluwalia, Resnicow, & Clark, 1998; Klonoff & Landrine, 1999; U.S.DHHS, 1998).

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community-based exercise programs specific to Blacks are needed (Jones & Nies, 1996). The challenge, therefore, is to create culturally appropriate physical activity programs (Clark, 1997). Data from adolescents suggest that there is need for specificity in the selection of physical activities (Sallis et al., 1996). For example, swimming is not seen as a viable activity among many Blacks because of the effect water and chlorine can have on their hair. A review of the literature on physical activity among Blacks suggests that greater attention is needed in the development of culturally appropriate instruments. These instruments should include well-defined, inoffensive terminology and should increase the recall of unstructured and intermittent physical activities (Tortolero, Masse, Fulton, Torres, & Kohl, 1999). Dietary Interventions Given the high rates of obesity among minority populations, particularly minority women, and the consequences for chronic illness, dietary interventions are critical to improving the health of ethnic minorities. A realistic diet plan should be based on individual needs, economic status, availability of food, likes and dislikes, lifestyle, and family dynamics (Kaul & Nidiry, 1999). Two critical components to successful dietary intervention among minority populations are individualized diets and sensitivity to food preferences (Kaul & Nidiry, 1999). In addition to nutrition education, exercise and behavior modification related to food intake must also be taught in dietary interventions.

GENDER Physical Activity Interventions A review of the literature suggests that there are relatively few studies of physical activity interventions for minorities (Stone, McKenzie, Welk, & Booth, 1998). Of these results, several documented programs significantly increased aerobic fitness with a moderate exercise-training regime and were culturally appropriate (for review, see Duey et al., 1998). In studies of barriers to physical activity among minorities, the most common environmental barriers included safety, availability, cost, transportation, lack of child care, lack of time, health concerns, lack of motivation, and lack of an exercise environment that includes Blacks (Carter-Nolan, Adams-Campbell, & Williams, 1996; Eyler et al., 1998; Jones & Nies, 1996). The social dimension of the planned activity may be as important as the selection of activities. Research in this area has suggested that

One universal inequity that cuts across both ethnic and socioeconomic class lines is the gender gap in life expectancy. While life expectancy has increased for both sexes over the past decades, men die about 5 years earlier than women (Xu et al., 2010). The gap is largest when measured at birth but shrinks with age. For example, if a man lives to 75 years of age in 2007, his life expectancy is only 1.9 years shorter than that of a woman’s of the same age (Xu et al., 2010). This shrinking gender gap with age is because men are more likely to die at younger ages than women. In the United States, almost all of the 15 leading causes of death for the entire population for 2007 showed men to be at greater risk than women. That is, the male-to-female mortality ratios (i.e., male age-adjusted death rate divided by the female age-adjusted death rate) were 1.5 for the number one killer, heart disease, followed

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by cancer (1.4), chronic lower respiratory diseases (1.3), accidents (2.1), diabetes (1.4), influenza and pneumonia (1.4), kidney diseases (1.4), septicemia (1.2), suicides (3.9), chronic liver disease and cirrhosis (2.2), Parkinson’s disease (2.2), and homicide (3.8). Together, these causes of mortality accounted for 71.6% of deaths among men and women in the United States (Xu et al., 2010). The only cause of death among the 15 leading causes for which the ratio of male-to-female death rate was less than 1 was Alzheimer’s disease (0.7), and women were as likely as men to die from strokes and hypertension (ratios of age-adjusted death rates = 1.0).1 Several factors might account for the gender gap in life expectancy. These can be grouped into four categories: biological, behavioral, psychosocial, and biobehavioral. Biological Factors In her now-classic article, “Why Do Women Live Longer Than Men?” Waldron concluded that “physiological differences have not been shown to make any substantial contribution to higher male death rates” (Waldron, 1976, p. 356). This conclusion has not changed much over the past decades (Gorman & Read, 2007; Waldron, 2005). Although men’s greater vulnerability to infectious diseases (attributed in part to lower levels of serum level of immunoglobulin M [IgM] and higher testosterone levels) is a probable contributor to the greater male mortality in several of the leading causes of death, gender differences in IgM are present only between the ages of 5 and 65 (Reddy, Fleming, & Adesso, 1992), and testosterone decreases with age. In spite of this, men still have higher rates of infectious diseases than women before and after these age markers (Reddy et al., 1992). Even the role of estrogens in the protection from heart disease among women has been questioned (Barrett-Connor, 1997; Barrett-Connor & Stuenkel, 1999; Mendelsohn & Kara, 2007; Waldron, 2005). Furthermore, international data on CHD mortality from 46 communities in 24 countries have shown that, although CHD mortality rates in women are lower than rates in men, male:female ratios vary widely, ranging from 10:1 in Iceland to 10:6 in Beijing, China (Jackson et al., 1997; also see Waldron, 2005). 1 Although

not among the 15 leading causes of death in the United States, HIV disease continues to be one of the five leading causes of death for specific age groups for women and in the Black population (Xu et al., 2010). The age-specific HIV/AIDS epidemic in women has been observed worldwide and has been linked to gender inequalities and violence in relationships (see Jewkes, 2010).

The fact that the differences between countries are larger than the difference between the genders suggests that male anatomy is not destiny, at least in regard to CHD. Additionally, the epidemic of cardiovascular diseases among young and middle-age Eastern European men has widened the gender gap in life expectancy over a very brief time span, which suggests that other than genetic factors play a role in men’s greater mortality risk (Weidner & Cain, 2003; Weidner, Kopp, & Kristenson, 2002). Behavioral Factors Behavioral factors, such as smoking, alcohol use, poor diet, and physical inactivity, are clearly involved in many of the major chronic diseases and causes of death worldwide (Heron et al., 2009; Lopez, Mathers, Ezzati, Jamison, & Murray, 2006; Mokad, Marks, Stroup, & Gerberding, 2004). For example, cigarette smoking has been linked to heart disease, lung cancer (the major form of malignant neoplasms), chronic obstructive pulmonary disease, and pneumonia. Excessive alcohol consumption increases the risk for a number of diseases, foremost among them heart and liver disease. Alcohol, along with lack of seat belt use, also plays a major role in motor vehicle accidents and injuries in general. Other accidental deaths, as well as homicide and suicide, often involve firearms. Overeating, unhealthy diets, and lack of exercise (resulting in obesity) contribute to almost all chronic diseases. In regard to obesity, it appears that adverse health effects are primarily associated with abdominal fat accumulation (Lapidus & Bengtsson, 1988; Larsson, 1988). An evaluation of lifestyle practices (i.e., smoking, physical inactivity, and unhealthy eating habits) in the INTERHEART study confirmed their importance for myocardial infarction (MI), collectively accounting for more than 55% of the population attributable risk (PAR) in women and men (Anand et al., 2008), that is, the reduction in incidence that would be observed if the population were unexposed to these health-damaging lifestyle factors. Examination of gender differences in these behaviors (with the exception of overeating and exercise) favors women (Gorman & Read, 2007; Reddy et al., 1992; Waldron, 1995, 1997). On overeating (quantity), the genders appear to be similar. However, one consequence of overeating, fat distribution, favors women: Men have a tendency to accumulate fat in the abdominal region (apple-shaped), whereas most women accumulate fat in a pear-shaped fashion. (This gender difference in body fat accumulation is probably influenced by behavioral, genetic, and hormonal factors; see Rodin [1992] for a

Sociocultural Aspects of Health Psychology

review.) On the quality of foods consumed, there seems to be some evidence that men’s diets have a higher ratio of saturated to polyunsaturated fat and lower vitamin C content than women’s diets (Connor, Ojeda, Sexton, Connor, & Weidner, 2002; Waldron, 1995). The unfavorable fat ratio could contribute to men’s elevated risk for CHD and cancers. The only gender difference favoring men consistently appears to be exercise. However, this may be due to the use of questionnaires designed for men, which focus on sports and neglect physical activities associated with housework (Barrett-Connor, 1997). Furthermore, stress may play a greater role for health-damaging behaviors among men than among women. For example, job strain appears to be associated with increases in health-damaging behaviors (e.g., cigarette smoking, excessive alcohol and coffee consumption, lack of exercise) among men but not among women (Weidner, Boughal, Connor, Pieper, & Mendell, 1997). Thus, considering the major behaviors involved in many causes of death, women clearly fare better than men. To what extent gender differences in health behaviors contribute to the observed gender difference in many of the leading causes of death remains unclear. The aforementioned study by Jackson and his colleagues (1997) sheds some light on this question, at least in regard to the leading cause of death, CHD. On the basis of their analyses of five major coronary risk factors (elevated blood pressure and cholesterol, low HDL cholesterol, cigarette smoking, and obesity), the authors concluded that 40% of the variation in the gender ratios of CHD mortality in 24 countries could be explained by gender differences in these five risk factors. Although these results underscore the importance of these factors for heart disease and suggest that interventions aimed at reducing levels of these risk factors in men would narrow the gender gap in CHD mortality, they also point to other factors that contribute to the gender gap, namely, psychosocial factors.

PSYCHOSOCIAL FACTORS Although psychosocial factors have been included in large population studies only recently, evidence of adverse health effects linked to psychosocial stress is accumulating. For example, hostility/anger, depression or vital exhaustion, lack of social support, and work stress all have prospectively been linked to premature mortality from all causes and coronary heart disease mortality in both sexes (Barefoot, Larsen, von der Lieth, & Schroll, 1995; Barefoot &

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Schroll, 1996; Cacioppo & Patrick, 2008; Denollet, Schiffer, & Spek, 2010; Frasure-Smith & Lesperance, 2010; House et al., 1988; Kuper, Marmot, & Hemingway, 2002; Holt-Lunstad, Smith, & Layton, 2010; Orth-Gomer, Weidner, Anderson, & Chesney, 2010; Schnall, Landsbergis, & Baker, 1994; Schwarzer & Rieckman, 2002; Spaderna et al., 2010; Weidner & Kendel, 2010; Weidner, Zahn, et al., 2011; Whooley & Browner, 1998; Zahn et al., 2010).2 Some clues regarding the importance of psychosocial factors for myocardial infarction in both women and men comes from the largest global study of MI, the INTERHEART study (Anand et al., 2008; Yusuf et al., 2004). This study compared over 15,152 cases with 14,820 sexand age-matched controls in 52 countries on all continents. Most interestingly, in addition to eight commonly assessed factors related to heart disease (e.g., hypertension, abnormal lipids, diabetes, smoking, exercise, moderate alcohol consumption), INTERHEART also included an assessment of eating a healthy diet and a psychosocial stress index. This index consisted of depression, stress at work or at home, financial stress, major life events, and low locus of control. Together, these risk factors were significantly associated with MI in both women and men and accounted for more than 90% of the PAR in both sexes. Interestingly, the lower burden of MI among women at younger ages (