Understanding the Stigma of Mental Illness: Theory and ... · PDF fileJWBK162-FM JWBK162-Arboleda March 19, 2008 21:41 Understanding the Stigma of Mental Illness: Theory and Interventions

JWBK162-FM JWBK162-Arboleda March 19, 2008 21:41

Understanding the Stigma ofMental Illness: Theory and

Interventions

Edited by

Julio Arboleda-Florez

Queen’s University, Ontario, Canada

and

Norman Sartorius

University of Geneva, Switzerland



Understanding the Stigma ofMental Illness



Understanding the Stigma ofMental Illness: Theory and

Interventions

Edited by


Queen’s University, Ontario, Canada

and

Norman Sartorius

University of Geneva, Switzerland


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Library of Congress Cataloging-in-Publication Data

Understanding the stigma of mental illness : theory and interventions/edited by Julio Arboleda-Florez and

Norman Sartorius.

p. ; cm.

Includes bibliographical references and index.

ISBN: 978-0-470-72328-9 (alk. paper)

1. Mental illness–Public opinion. 2. Mental illness–Social aspects. 3. Schizophrenia–Public opinion.

4. Schizophrenia–Social aspects. 5. Stigma (Social psychology) I. Arboleda-Flórez, J. (Julio),

1939– II. Sartorius, N.

[DNLM: 1. Mental Disorders. 2. Cross-Cultural Comparison. 3. Health Policy.

4. International Cooperation. 5. Prejudice. 6. Stereotyping. WM 140 U558 2008]

RC455.2.P85U53 2008

362.2′6–dc22 2007047643

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-0-470-72328-9

Typeset in 10/12pt Times by Aptara Inc., New Delhi, India

Printed and bound in Great Britain by Antony Rowe Chippenham, Wiltshire

This book is printed on acid-free paper responsibly manufactured from sustainable forestry

in which at least two trees are planted for each one used for paper production.

Cover illustration: Holly Nielson

http://www.wileyeurope.com

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JWBK162-FM JWBK162-Arboleda April 14, 2008 18:54

Contents

List of contributors vii

Foreword ix

Preface xi

1 The rights of a powerless legion 1


2 Cross-cultural aspects of the stigma of mental illness 19

Bernice A. Pescosolido, Sigrun Olafsdottir, Jack K. Martin and J. Scott Long

3 The WPA Global Programme against Stigma and Discrimination

because of Schizophrenia 37

Norman Sartorius

4 ‘Fighting stigma and discrimination because of schizophrenia –

Open the Doors’: a collaborative review of the experience from the German

project centres 49

A.E. Baumann, W. Gaebel, et al.

5 Stigma and health care staff 69

Juan J. Lopez-Ibor Jr., Olga Cuenca and Marıa-Ines Lopez-Ibor

6 Evaluating programmatic needs concerning the stigma of mental illness 85

Beate Schulze

7 Using the Internet for fighting the stigma of schizophrenia 125

Hugh Schulze

8 Building an evidence base for anti-stigma programming 135

Heather Stuart

9 Other people stigmatize . . . but, what about us? Attitudes of mental

health professionals towards patients with schizophrenia 147

Alp Ucok

JWBK162-FM JWBK162-Arboleda April 14, 2008 18:54

vi CONTENTS

10 Implementing anti stigma programmes in Boulder, Colorado and

Calgary, Alberta 161

Richard Warner

11 Stigma measurement approaches: conceptual origins and

current applications 175

Lawrence H. Yang, Bruce G. Link and Jo C. Phelan

Appendix Inventories to measure the scope and impact of stigma

experiences from the perspective of those who are

stigmatized – consumer and family versions 193

Heather Stuart, Michelle Koller and Roumen Milev

Index 205


List of contributors

Josef Aldenhoff, Center for Integrative Psychiatry , ZIP gGmbH, Niemannsweg 147,24105 Kiel, Germany

Matthias Angermeyer, Centre for Public Mental Health, Untere Zeile 13, 3482 Gosingam Wagram, Austria

Julio Arboleda-Flórez, Department of Psychiatry, Queen’s University, 99 UniversityAvenue, Kingston, ON K7L 3N6, Canada

Anja E. Baumann, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University, Bergische Landstraβe 2, Düsseldorf 40629, Germany

Romain Beitinger, BASTA Bundnis für psychisch erkrankte Menschen, Möhlstr. 26,81675 Munich, Germany

Thomas Bock, Department of Psychiatry and Psychotherapy, University of Hamburg,Martinistraβe 52, 20246 Hamburg, Germany

Olga Cuenca, Llorente & Cuenca , Hermanos Becquer 4, Madrid 28006, Spain

Petra Decker, Department of Psychiatry and Psychotherapy, LMU University of Munich,Nussbaumstraβe 7, 80336 Munich, Germany

Arno Deister, Clinic for Psychiatry, Psychotherapy and Psychosomatic Medicine, Robert-Koch-Str. 2, 25524 Itzehoe, Germany

Wolfgang Gaebel, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University, Bergische Landstraβe 2, Düsseldorf 40629, Germany

Werner Kissling, Department of Psychiatry and Psychotherapy, Technical University ofMunich, Möhlstrasse 26, 81675 Munich, Germany

Michelle Koller, Department of Community Health and Epidemiology, Queen’s Univer-sity, 2nd Floor, Abramsky Hall, Arch Street, Kingston, ONK7L 3N6, Canada

Bruce G. Link, Department of Epidemiology, Columbia University, 722 West 168 Street,New York, NY 10032, USA

J. Scott Long, Department of Sociology, Indiana University, 1020 E. Kirkwood Ave,Bloomington, IN 47405, USA

Juan Jose Lopez-Ibor, Psychiatry Department, Faculty of Medicine, Ciudad Universi-taria s/n, Madrid, 28040, Spain

María Ines Lopez-Ibor, Department for Psychiatry and Medical Psychology , Faculty ofMedicine, Complutense University of Madrid, Ciudad Universitaria, Madrid, 28040, Spain


viii LIST OF CONTRIBUTORS

Jack K. Martin, Karl F. Schuessler Institute for Social Research, Indiana University,1022 E. Third St., Bloomington, IN 47405, USA

Roumen Milev, Department of Psychiatry, Queen’s University, 99 University Avenue,Kingston, ON K7L 3N6, Canada

Hans-Jürgen Moller, Department of Psychiatry and Psychotherapy, LMU University ofMunich, Nussbaumstraβe 7, 80336 Munich, Germany

Dieter Naber, Department of Psychiatry and Psychotherapy, University of Hamburg,Martinistraβe 52, 20246 Hamburg, Germany

Sigrun Olafsdottir, Dept. of Sociology, Boston University, 96 Cummington St., Boston,MA 02215, USA

Bernice A. Pescosolido, Department of Sociology, Indiana University, 1022 E. Third St.,Bloomington, IN 47405, USA

Jo C. Phelan, Department of Sociomedical Sciences, Columbia University, 722 West 168Street, New York, NY 10032, USA

Manuela Richter-Werling, Irrsinnig Menschliche.V, Verein für Offentlichkeitsarbeit inder Psychiatrie, Johannisallee 20, 04317 Leipzig, Switzerland

Norman Sartorius, University of Geneva, 14 Chemin Colladon, Geneva 1209,Switzerland

Beate Schulze, Department of General and Social Psychiatry, University of Zurich,Rämistrasse 71, Zurich, CH-8006, Switzerland

Hugh Schulze, c/Change Inc, 1052 W. Fulton Market 2e, Chicago, IL 60607, USA

Heather Stuart, Department of Community Health & Epidemiology, Queen’s University,99 University Avenue, Kingston, ON K7L 3N7, Canada

Alp Üçok, Department of Psychiatry, Faculty of Medicine, Istanbul University, MilletStreet , Istanbul 34390, Turkey

Richard Warner, Mental Health Center of Boulder County, 330 17th St., Boulder, CO80302, USA

Kerstin Wundsam, BASTA Bundnis fur psychisch erkrankte Menschen, Mohlstr. 26,81675 Munich, Germany

Lawrence H. Yang, Department of Epidemiology, Columbia University, 722 West 168thStreet, New York, NY 10032, USA

Harald Zaske, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University,Rhineland State Clinics Dusseldorf, Bergische Landstraβe 2, 40629 Düsseldorf, Germany


Foreword

The World Health Organization has estimated that 450 million people today suffer frommental or behavioural disorders, or from psychosocial problems such as those related toalcohol and drug abuse. Many of them suffer alone and in silence. Many never receivetreatment of any kind. Between them and the prospect of care stand the barriers of stigma,prejudice, shame and exclusion.

In Latin America and the Caribbean, as everywhere else in the world, the burden of mentaldisorders has become too large to ignore. Current data likely underestimate the numbers ofuntreated people but even for the acknowledged numbers, there is a wide gap between theneed for and provision of mental health care. Changes in the population structure will onlywiden this treatment gap unless remedial policies can be formulated and implemented.

The World Health Organization and the Pan American Health Organization have issuedthis emphatic statement: Mental Health, neglected for far too long, is crucial to the overallwell-being of individuals, societies and countries and must be universally regarded in anew light.

The stigmatizing of, and discrimination against, people with mental disorders is as oldas humanity, but there has never before been a Zeitgeist, a moment, a social group, or thepolitical will to focus on finding solutions, such as there is today. This new determination toresolve problems may be related to the realization that mental illness does not respect age,race or socio-economic status and that, in any country, a large proportion of the populationwill be affected by mental health. Mentally ill people and their families need treatment, socialservices and enlightened policies to manage their conditions; their needs can no longer beignored. Moreover, the economic impact of stigmatization upon medical resources, as wellas upon absenteeism in the labour force, also demands attention. Researchers, clinicians,policy makers, those affected and their families seem to be of one mind–it is time to findsolutions.

That stigma and discrimination exist is not in question. It is known that stigma anddiscrimination negatively affect the treatment and recovery of people with mental illness.There are moves to combat these but such interventions themselves require evaluationso that we can learn what has an effect and what does not. What need to be more clearlyelucidated are ways to measure stigma and discrimination and then ways to determine whichtreatment strategies are most effective. Scales to measure stigma have to be devised andtailored to measure this social construct among the stigmatizers, which might be the wholeof the society, including even the mentally ill themselves (for self-stigma is a major blockto recovery). Four intervention methods are commonly recognized – literacy campaigns,protest actions, contact enhancements and political activism to protect the civil and politicalrights of patients. The impact and effectiveness of these methods need to be evaluated.

This book is utopian in the sense that it has been conceived as a way to start doing moreabout measuring stigma and discrimination and about intervening to break the cycle of


x FOREWORD

despair that these produce. The book, therefore, is not about what stigma and discriminationare, or their impacts, but about the best ways to measure them and how to reduce them.The book contains theoretical chapters to frame the issue, but most address measurementand interventions. As such, the book is directed at anti-stigma practitioners, researchers andclinicians. It should be a resource for academics and students intent on learning more aboutthese issues and, last but not least, a guide for policy makers and administrators interestedin improving the way people with mental illness are managed in clinical settings and in thecommunity. The book is a call to action and a cry for the inclusion of the mentally ill in oursociety.

I am pleased to present this book to you and to recommend it to the public healthcommunity and other members of society involved in this subject. The Pan AmericanHealth Organization acknowledges and appreciates the contribution of this distinguishedgroup of experts. I hope that this excellent and useful book will help hasten the urgentchanges that are needed in our region.

Dr. Mirta Roses PeriagoDirector, Pan American Health Organization


Preface

The editors and the majority of those who contributed chapters to this volume workedtogether for a number of years in the largest ever international programme to combatstigma and discrimination caused by a disease. The programme, initiated as an InstitutionalProgramme of the World Psychiatric Association (WPA) in 1996, assembled teams in sometwenty countries, and experts from many more1 to fight stigmatization and discriminationagainst schizophrenia sufferers. The programme was highly successful in many of its settingsand is still running in a number of the countries originally involved, as well as in others thatjoined later.

Reflecting these origins, this volume contains two types of chapters: those dealing withtheoretical issues (chapters by Arboleda-Florez, Stuart, B. Schulze, H. Schulze, and Yangand his colleagues), and those reporting on experience from some of the settings of theWPA programme – the chapters by Lopez-Ibor and colleagues, Baumann and colleagues,and Ucok and Warner. Sartorius describes the WPA programme as a whole and summarizessome of the main lessons learned during its first 10 years. One chapter has been contributedby an author who did not participate in the WPA programme – Pescosolido discusses amajor investigation of attitudes to people with mental illness, bringing together data froma variety of countries.

In the chapters dealing with theoretical issues, emphasis has been placed on problems ofmeasurement in anti-stigma programmes, starting with an historical overview of measure-ment approaches. These chapters describe the assessment of the needs which an anti-stigmaprogramme should attempt to address, strategies for evaluating such efforts and the use of ad-vanced information technology in their conduct. Of the chapters reporting country-specificissues, two address an issue that has received insufficient attention in the past – the role ofhealth care staff in stigmatization – while one reviews the way in which a number of centrescollaborated in establishing anti-stigma initiatives simultaneously over several locations inGermany.

The main message of the volume is that it is possible to carry out successful programmesagainst stigma and that a robust collection of interventions has been developed in parallelwith the relevant technology of measurement and evaluation. The question today is nolonger whether we should fight stigma – we must because stigma remains the main obstacleto any mental health programme – nor even how this should be done. The focus has shiftedto the choice to be made, by individuals and societies– to do something about stigma or toclose their eyes both to the need to act and to the options for effective intervention that areat their disposal.

The authors and editors hope that this volume will spur individuals and societies to act.

Julio Arboleda-FlorezNorman Sartorius

December 2007

1 Sartorius N. and Schulze H.: Reducing the Stigma of Mental Illness - A Report from a Global Programme of the WorldHealth Organization. Cambridge: Cambridge University Press, 2005


JWBK162-01 JWBK162-Arboleda March 18, 2008 10:20

1 The rights of a powerless legion

Julio Arboleda-FlorezDepartment of Psychiatry, Queen’s University, Kingston, ON K7L 3N6, Canada

Introduction

The most frequent contact the general public has with mental illness is through the mediaor by direct observation in the busy streets of large cities of derelicts, most of whom arementally ill. Unfortunately, media portrayals of mental patients usually relate to them asunpredictable, violent and dangerous. The association between mental illness and violenceis only one of the many negative stereotypes and prejudicial attitudes held by the publicabout persons with a mental illness. Direct observation of mentally ill persons in the streetsfurther cements the stereotype that mental illness causes an inevitable downward spiral forthose who are affected. These impressions help to perpetuate stigmatizing attitudes againstmental conditions and discriminatory practices against mental patients.

Findings of the landmark psychiatric epidemiological study of Stirling County in NovaScotia, Canada, are described in a classic book entitled My Name is Legion [1].1 Thisbiblical quote [2] is used by many writers and, as used in the Stirling County study, itconveys the large number of those affected. Years after this study and on observing howmental patients are treated, managed or disposed of in many countries, it is obvious that theirnumbers do not change their plight in society. Despite their numbers, mental patients do notcount politically, they are powerless. It is the thrust of this chapter that whereas attitudessuch as stigma might be endured, discrimination has to be counteracted; rights have to befought for.

This chapter contains a historical overview on matters of stigma and includes a reviewof theoretical elements that lie at the foundations of stigma as a social construct and itsnegative impacts on patients and their families as well as a dissection of common elementsof programmes aimed at combating the stigma of mental illness. The chapter also contains areview on the matter of discrimination which is considered to be the most pernicious aspectof stigma as it impacts on the political and civil rights of mental patients.

Historical elements

Stigma, a tattoo or brand in Greek (from the verb stizein), was a distinguishing mark burnedor cut into the flesh of slaves or criminals by the Ancient Greeks so that others would know

1 This is a quote from the Bible relating how Jesus is said to have cast the demons out of a possessed individual. Pigs ate thedemons and proceeded to drown themselves in the Sea of Galilee.

Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Florez and Norman SartoriusC© 2008 John Wiley & Sons, Ltd

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Understanding the Stigma of Mental Illness: Theory and ... · PDF fileJWBK162-FM JWBK162-Arboleda March 19, 2008 21:41 Understanding the Stigma of Mental Illness: Theory and Interventions