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JWBK162-FM JWBK162-Arboleda March 19, 2008 21:41
Understanding the Stigma of
Mental Illness: Theory and
Interventions
Edited by
Julio Arboleda-Fl ´orez
Queen’s University, Ontario, Canada
and
Norman Sartorius
University of Geneva, Switzerland

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

JWBK162-FM JWBK162-Arboleda March 19, 2008 21:41
Understanding the Stigma of
Mental Illness

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

JWBK162-FM JWBK162-Arboleda March 19, 2008 21:41
Understanding the Stigma of
Mental Illness: Theory and
Interventions
Edited by
Julio Arboleda-Fl ´orez
Queen’s University, Ontario, Canada
and
Norman Sartorius
University of Geneva, Switzerland

JWBK162-FM JWBK162-Arboleda March 19, 2008 21:41
Copyright C/circlecopyrt2008 John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester,
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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 2008362.2
/prime6–dc22 2007047643
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British LibraryISBN: 978-0-470-72328-9Typeset in 10/12pt Times by Aptara Inc., New Delhi, India
Printed and bound in Great Britain by Antony Rowe Chippenham, WiltshireThis book is printed on acid-free paper responsibly manufactured from sustainable forestryin which at least two trees are planted for each one used for paper production.
Cover illustration: Holly Nielson

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Contents
List of contributors vii
Foreword ixPreface xi
1 The rights of a powerless legion 1
Julio Arboleda-Fl ´orez
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 37Norman Sartorius
4 ‘Fighting stigma and discrimination because of schizophrenia –
Open the Doors’: a collaborative review of the experience from the Germanproject centres 49A.E. Baumann, W. Gaebel, et al.
5 Stigma and health care staff 69
Juan J. L ´opez-Ibor Jr., Olga Cuenca and Mar ´ıa-In´es L´opez-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 147Alp¨Uc¸ok

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vi CONTENTS
10 Implementing anti stigma programmes in Boulder, Colorado and
Calgary, Alberta 161Richard Warner
11 Stigma measurement approaches: conceptual origins and
current applications 175Lawrence 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 arestigmatized – consumer and family versions 193
Heather Stuart, Michelle Koller and Roumen Milev
Index 205

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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 G¨ osing
am Wagram, Austria
Julio Arboleda-Flórez, Department of Psychiatry, Queen’s University, 99 University
Avenue, Kingston, ON K7L 3N6, Canada
Anja E. Baumann, Department of Psychiatry and Psychotherapy, Heinrich-Heine-
University, Bergische Landstra βe 2, Düsseldorf 40629, Germany
Romain Beitinger, BASTA B¨ undnis für psychisch erkrankte Menschen, Möhlstr. 26,
81675 Munich, Germany
Thomas Bock, Department of Psychiatry and Psychotherapy, University of Hamburg,
Martinistra βe 52, 20246 Hamburg, Germany
Olga Cuenca, Llorente & Cuenca , Hermanos B´ ecquer 4, Madrid 28006, Spain
Petra Decker, Department of Psychiatry and Psychotherapy, LMU University of Munich,
Nussbaumstra βe 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 Landstra βe 2, Düsseldorf 40629, Germany
Werner Kissling, Department of Psychiatry and Psychotherapy, Technical University of
Munich, 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
Ju´an Jos´ eL ´opez-Ibor, Psychiatry Department, Faculty of Medicine, Ciudad Universi-
taria s/n, Madrid, 28040, Spain
María In´ es L´opez-Ibor, Department for Psychiatry and Medical Psychology , Faculty of
Medicine, Complutense University of Madrid, Ciudad Universitaria, Madrid, 28040, Spain

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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 M¨ oller, Department of Psychiatry and Psychotherapy, LMU University of
Munich, Nussbaumstra βe 7, 80336 Munich, Germany
Dieter Naber, Department of Psychiatry and Psychotherapy, University of Hamburg,
Martinistra βe 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 168
Street, New York, NY 10032, USA
Manuela Richter-Werling, Irrsinnig Menschliche.V , Verein für ¨Offentlichkeitsarbeit in
der 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, Millet
Street , Istanbul 34390, Turkey
Richard Warner, Mental Health Center of Boulder County, 330 17th St., Boulder, CO
80302, USA
Kerstin Wundsam, BASTA B¨ undnis f¨ ur psychisch erkrankte Menschen, M¨ ohlstr. 26,
81675 Munich, Germany
Lawrence H. Yang, Department of Epidemiology, Columbia University, 722 West 168th
Street, New York, NY 10032, USA
Harald Z¨ aske, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University,
Rhineland State Clinics D¨ usseldorf, Bergische Landstra βe 2, 40629 Düsseldorf, Germany

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Foreword
The World Health Organization has estimated that 450 million people today suffer from
mental 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 mental
disorders 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 issued
this emphatic statement: Mental Health, neglected for far too long, is crucial to the overall
well-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 old
as 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 and
discrimination 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 more
about measuring stigma and discrimination and about intervening to break the cycle of

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x FOREWORD
despair that these produce. The book, therefore, is not about what stigma and discrimination
are, 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 health
community 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 Periago
Director, Pan American Health Organization

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Preface
The editors and the majority of those who contributed chapters to this volume worked
together 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 more
1to ﬁght stigmatization and discrimination
against 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 with
theoretical issues (chapters by Arboleda-Fl´ orez, Stuart, B. Schulze, H. Schulze, and Yang
and his colleagues), and those reporting on experience from some of the settings of theWPA programme – the chapters by L´ opez-Ibor and colleagues, Baumann and colleagues,
and¨U¸cok and Warner. Sartorius describes the WPA programme as a whole and summarizes
some 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 of
measurement 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 programmes
against 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-Fl´ orez
Norman Sartorius
December 2007
1Sartorius N. and Schulze H.: Reducing the Stigma of Mental Illness – A Report from a Global Programme of the World
Health Organization . Cambridge: Cambridge University Press, 2005

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1The rights of a powerless legion
Julio Arboleda-Fl ´orez
Department 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 media
or 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 Nova
Scotia, Canada, are described in a classic book entitled My Name is Legion [1].
1This
biblical 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 review
of 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 burned
or cut into the ﬂesh of slaves or criminals by the Ancient Greeks so that others would know
1This is a quote from the Bible relating how Jesus is said to have cast the demons out of a possessed individual. Pigs ate the
demons and proceeded to drown themselves in the Sea of Galilee.
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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2 THE RIGHTS OF A POWERLESS LEGION
who they were and that they were less valued members of society. Although the Greeks
did not use the term ‘stigma’ in relation to mental illness, stigmatizing attitudes aboutthe illnesses were already apparent in the sense that mental illness was associated withconcepts of shame, loss of face, and humiliation [3], as in Sophocles’ Ajax or in Euripides’
The Madness of Heracles.
Later, and throughout the Christian world, the word stigmata became associated with
peculiar marks on individuals re-presenting the wounds of Christ on their bodies, mostly ontheir palms and soles [4]. This religious connotation is not the same as the other derivativeof the Greek word stigma , which is a form of social construction to indicate a distinguishing
mark of social disgrace that, at the same time, conveys a social identity. The inquisitorialattitude toward witches, as dictated in the Malleus Maleﬁcarum (The Witches’ Hammer) [5],
apart from being highly misogynous, also represents a negative and condemning attitudetoward mental illness. This attitude might have been the origin of the stigmatizing attitudesheld toward persons with mental illness from the rise of rationalism in the 17th century tothe present day in Christian cultures [6]. ‘Madness’ has long been held among Christiansas being a form of punishment inﬂicted by God on sinners [7].
Recent movements to advance the human rights of mentally ill persons have their genesis
in the appalling abuses suffered by generations of mental patients, both before and after thebirth of the asylum. Paradoxically, however, the birth of the asylum was in many respectsthe product of compassion: although the story may be apocryphal, the establishment of theﬁrst European asylum for the insane in Valencia in 1409 by Father Gilabert Jofr´ e is said
to have been motivated by Jofr´ e’s witnessing of the abuse suffered by a mental patient [8].
However, what began as a refuge quickly developed into a prison, and resulted in what LuisVives in the 16th century was already describing as institutionalized social exclusion [9].But, as Sebastian Brant pointed out [10], banishment through institutionalization was just acontinuation of a more pernicious model of social management prevalent before the adventof the asylum in Valencia. In his Stultifera Navis (Ship of Fools ) Brant tells us how, before
theNarrenhaus (madhous), mental patients were condemned to navigate the waters of the
rivers of Europe in Narrenschiffes that never found a port as they were banished from town
to town.
Socio-politically, the asylums replaced the leprosariums. But whereas the latter were
exclusively for lepers, asylums became places for all sorts of undesirables, not just thoseaffected by mental conditions: institutions made for their time and aptly described as the‘great conﬁnement’ [11]. In fact, the lettres de cachet contemplated in the French Loi
sur les ali ´en´esof 1838 [12] gave the ‘hospital archers’ ( gardiens de l’H ˆopital ) authority
to round up and lock up, among others, ‘beggars, vagabonds, the chronically unemployed,criminals, rebel politicians, heretics, prostitutes, syphilitics, alcoholics, madmen and idiots’.These orders became the blueprint for similar institutions all over the Western world [13].The characterization of the mentally ill as ‘wild beasts’ left no alternative but to put themaway [14].
It has been a long struggle for the mentally ill to return from their banishment. Even
gestures such as that of Pinel who, imbued with the libertarian ideals of the French Revo-lution, publicly cut the chains that held the mentally ill to their posts at La Saltpˆ etri`ere in
1795, have been insufﬁcient, as old and decrepit mental hospitals are still the preferred, andoften only, model of care in many countries [15]. And yet, the opposite, allowing patientsto return to their communities, has not resulted in meaningful liberation for most personswith mental disabilities. In most countries, even the most advanced and prosperous, men-tal patients are no longer in asylums, but in prisons, which have become veritable mental

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THEORETICAL CONSIDERATIONS 3
hospitals [16]. Criminalization of persons with mental disorders is regulated and overseen
by courts of law and forensic psychiatrists who, in concert, have become the gatekeepers,or modern-day superintendents [17]. The process of forensic evaluations has become an-other ﬁlter for treatment that keeps mentally ill persons in limbo, ensconced among threeseemingly inimical systems – health care, justice and corrections. In the end, the impactsof many forensic evaluations amount to the same reality – loss of liberty in a hospital forthe criminally insane or deprivation of liberty in a jail pending legal dispositions. As askedby one commentator, what have the mental patients gained? [18].
Theoretical considerations
Stigma has been thought of as an attribute that is ‘deeply discrediting’ so that stigma-tized persons are regarded as being of less value and ‘spoiled’ by three different kinds ofstigmatizing conditions: ‘abominations’ of the body, such as physical deformities, ‘tribalidentities’ such as race, sex or religion, and ‘blemishes of individual character’, such asmental disorders or unemployment [19]. Stigma, however, is not a static concept, but a
social construction that is linked to values placed on social identities, a process consistingof two fundamental components: the recognition of the differentiating ‘mark’, and the sub-sequent devaluation of the bearer [20]. Thus, stigma could be conceived of as a relationalconstruct that is based on attributes, which may change with time and from one culture toanother. Stigma develops within a social matrix of relationships and interactions so that newconditions could become stigmatizing and conditions that may be stigmatizing at one timeor within a given culture could come to be accepted later so that their bearers stop beingstigmatized.
Furthermore, stigma can be understood within a three-dimensional axis involving per-
spective, identity and reactions. Perspectives pertain to the way the stigma is perceived.
Stigma is different, whether it be perceived by the person who does the stigmatizing (per-ceiver) or by the person who is being stigmatized (target). Identities relate to group belong-
ingness, and they lie in a continuum from entirely personal to group-based identiﬁcations.Reactions are the ways the stigmatizer and the stigmatized react to the stigma and its con-
sequences; reactions could be measured at the cognitive (knowledge), affective (feelings,tones and attitudes), and behavioural levels.
Along with these three dimensions it is also important to distinguish three major charac-
teristics of the stigmatizing mark: ‘visibility’, or how obvious the mark is, ‘controllability’,which relates to the origin or reason for the mark and whether it is under the control of thebearer, and ‘impact’ or how much those who do the stigmatizing fear the stigmatized [21].The more visible the mark, the more it might be perceived to be under the control of thebearer, and the more feared the impact, such as conveying an element of danger, the morepronounced the stigma.
Mental patients who show visible signs of their conditions because their symptoms or
the side effects of medications make them appear abnormal, who are socially construed asbeing weak of character or lazy, and who display threatening behaviours, usually score highon any of these three dimensions. By a process of association and class identity, all mentalpatients are equally stigmatized; individual patients, regardless of level of impairment ordisability, are lumped together into a class; class belongingness reinforces the stigma againstthe individual.
Unfortunately, a deﬁnition of stigma, what it is and how it develops, still leaves unan-
swered the question of whyit develops. However, a theory has been advanced although little

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4 THE RIGHTS OF A POWERLESS LEGION
is known about this, that three major components are required – function, perception and
social sharing [22]. An original ‘functional impetus’ would be accentuated through ‘percep-tion’, and subsequently consolidated through social ‘sharing’ of information. The sharingof stigma becomes part of a society that creates, condones and maintains the stigmatizingattitudes and behaviours. These authors further indicate that the most likely candidate forthe initial ‘functional impetus’ is the goal of avoiding threat to the self.
Initial perception of tangible or symbolic threat
↓
Perceptual distortions that amplify group differences
↓
Consensual sharing of threats and perceptions
2
Tangible threats are ‘instrumental’ in the sense that they threaten a material or concrete
good, while those that are symbolic threaten beliefs, values, ideology or the way in whichthe group ordains its social, political or spiritual domains.
Cultural perceptions of mental illness consider it as posing a tangible threat to the health
of society because it engenders two kinds of fear: the fear of potential immediate physicalthreat of attack and the fear that we may all share in losing our own sanity. Furthermore,to the extent that mentally ill persons are stereotyped, conceptualized and labelled [23] aslazy, unable to contribute, and hence, a burden to the system, mental illness may also beperceived as posing a symbolic threat to the beliefs and value system shared by members ofthe group. At a more practical level, the stigma associated with mental illness can also beattributed to the traditionally different venue for treatment for the mentally ill. For whereaspersons affected by a physical condition, with the exception of leprosy and tuberculosis,have always been cared for and treated in general hospitals in their own communities, mentalpatients were for centuries sent away to mental institutions or asylums that were usuallysituated far away from their communities. The decision to send persons with mental illnessto far-away mental hospitals, although well intentioned in its origins, contributed to theirdislocation from their communities, and the loss of their community ties, friendships andfamilies. At an academic level, the segregation between the two systems of health also meantthe banishment of mental illness and of psychiatry from the general stream of medicine.Psychiatry had no cures to offer and, being away from academic centres led it to stagnationin research and development. The few therapeutic successes, such as the cures for pellagraand for syphilis, were accomplished out of the mental hospitals. Worse, as those conditionsceased to be reasons for mental hospitalization, the idea was reinforced that the patientsthat remained in the mental hospitals suffering from other mental illnesses were incurable.The lack of effective therapies that inﬂuenced most of psychiatric work for centuries notonly contributed to the asylum mentality, but was also a result of the academic banishmentof psychiatry.
Myths and stigma
Stigma is a negative differentiation attached to some members of society who are affected
by some particular condition or state. This negative attitude that dictates that those members
2Adapted from Stangor and Crandall [22], p. 73

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VIOLENCE AND MENTAL ILLNESS 5
be maintained at a distance is related to negative stereotyping and prejudicial attitudes that,
in turn, lead to discriminatory practices. Thus, whereas stigma is an attitude, discrimination
is behaviour aimed at depriving the stigmatized person of legal rights and legally recognizedentitlements. Stigma, prejudice and discrimination are, therefore, inextricably related. Un-like prejudice, however, stigma involves deﬁnitions of character and class identiﬁcation, soit has larger implications and impacts.
Prejudice most often stems from ignorance, or unwillingness to ﬁnd the truth. For exam-
ple, a study conducted by the Canadian Mental Health Association [24] found that the mostprevalent misconceptions about mental illness included that mental patients were dangerousand violent (88%), that they had a low IQ or were developmentally handicapped (40%), thatthey could not function, hold a job, or have anything to contribute (32%), that they lackedwill power or were weak or lazy (24%), that they were unpredictable (20%), and, ﬁnally, thatthey were to be blamed for their own condition and should just shape up (20%). In a surveyamong ﬁrst-year university students in the United States, it was found that almost two-thirdsbelieved that ‘multiple personalities’ were a common symptom of schizophrenia, and on adifferent poll conducted among the general public 55% of respondents did not believe thatmental illness existed and only 1% acknowledged that mental illness was a major healthproblem [24]. Some of these myths also surfaced in a study conducted in Calgary, Alberta,Canada, during the pilot study for the World Psychiatric Association (WPA) programme‘Open the Doors ’. In this study [25], it was found that respondents believed that persons
with schizophrenia could not work in regular jobs (72%), had a split personality (47%), orwere dangerous to the public because of violent behaviour (14%). In Africa, conceptions ofmental illness are strongly inﬂuenced by traditional beliefs in supernatural causes and reme-dies. Even policy makers frequently hold the opinion that mental illness is often incurableand unresponsive to accepted medical practices [26]. Thus, high levels of knowledge couldcoexist with high levels of prejudice and negative stereotypes. For while most of the mythsabout mental illness could be traced down to prejudice and ignorance of these conditions,enlightened knowledge does not necessarily translate into less stigma unless the tangibleand symbolic threats that it poses are also eradicated.
Violence and mental illness
An association between mental illness and violence, speciﬁcally schizophrenia, althoughconﬁrmed epidemiologically, remains unclear and seems to ﬂow not so much throughdirect links of causality, but through a series of confounders and covariates [27]. Thesefacts, however, do not deter the media from their penchant to portray mental patients asunpredictable, violent and dangerous [28, 29]. This portrayal is reinforced by movies inwhich a popular plot, long exploited by the cinematographic industry, is that of the ‘psycho-killer’ [30]. Movies about ‘mentally ill killers’ have been identiﬁed by 85.6% of relativesof persons with mental illness as the most important contributor to the stigma of the illness[31]. Movies have not only stigmatized those with mental illness, their negative stereotypeshave extended also to psychiatrists who are often portrayed as libidinous lechers, eccentricbuffoons, vindictive, repressive agents of society, or evil minded; and in the case of femalepsychiatrists, as loveless, sexually frustrated and unfulﬁlled [32]. In fact, the media andmovies may just be reﬂecting on what the public feels and believes about mental illness.This would be hardly surprising when the public is bombarded with factual information ofmayhem and gore in horrendous crime committed by an alleged mental patient. At times,the story also mentions that the culprit is suspected to be ‘psycho’, ‘paranoid’, ‘depressed’

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6 THE RIGHTS OF A POWERLESS LEGION
or ‘schizophrenic’. This type of news, even when reported conscientiously and accurately,
arouses fear and apprehension and pushes the public to demand measures to prevent furthercrimes. Fear is the primary impulse to the development of stigma. The fear of mentalillness, and the subsequent stigmatization of those with mental illness, is largely based onfears that they are unpredictable and dangerous. One single case of violence is usuallysufﬁcient to counteract whatever gains mental patients have made to be accepted back intothe community. Persons with mental illness in general bear the brunt of impact becauseof the actions of the few. Unfortunately, the media do not inform the public that only avery small minority of mental patients commits serious crimes, or that the percentage ofviolence that could be attributed to mental illness as a portion of the general violence in thecommunity is also small [33].
Human rights infringements
Outright discriminatory policies ending in abuses of human rights and denial of legal en-titlements can often be traced to stigmatizing attitudes, plain ignorance about the facts ofmental illness, or lack of appreciation of the needs of persons with mental illness. Thesepolicies and abuses are not the preserve of any country in particular.
Modern mental health systems do not depend on mental hospitals, but on psychiatric
units in general hospitals and on an array of community mental health agencies. Thesesystems need a different level of discourse on human rights from the discourse attachedto institutions. Economic discrimination and the disparities in access to care as well asthe systemic, structural violence to which mental patients are subjected in the communityare the major issues in modern mental health systems. The human rights discourse has toevolve from over-preoccupation with basic rights to freedom and autonomy to protection ofcitizen entitlements denied to the mentally ill as a class within the larger social system. Thestruggle for those who care about them is to gain for them the same rights and entitlementsthat other citizens enjoy [34].
A distinction must be drawn between negative rights and positive rights or entitlements.
International sources of human rights recognize both negative and positive rights. Negativeor ‘ﬁrst-generation’ rights include those which preclude interference with a protected free-dom, and prevent the state from certain proscribed action. Positive or ‘second-generation’rights impose mandatory obligations upon states. Although the national systems of manycountries, especially democratic ones, provide signiﬁcant civil and constitutional protec-tions with respect to the negative rights of its citizens, including those who suffer frommental disorders, the same cannot be said with respect to entitlements to the provisionof social services [35]. Legal activism in mental health should aim at remedying theseshortcomings.
Most legislation that deals with the mentally ill reﬂects the realities of the past when
they were forced to remain in institutions; thus, it focuses on traditional political rightssuch as liberty, due process, protection against abuses and the authoritarian imposition oftreatment [36]. While it is very important to keep these protections in place, in the majorityof countries where deinstitutionalization policies have been implemented mental patientsare no longer in mental hospitals, but in the community. Most of them do not have accessto a bed in any type of hospital. The challenge facing many mental patients is the obverseof what preceded the current model; where systemic abuse and deprivation of freedomconstituted the greatest weakness under prior regimes, mental patients in modern modelsof care face structural and systemic neglect. This neglect has had a profound impact on all

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HUMAN RIGHTS INFRINGEMENTS 7
mental patients, as an unprotected social underclass. In this regard, the question whether
mental patients have gained anything may appear to be rhetorical, but looking at the plightof the mentally ill in the mental health ghettos of any large city, or in the prisons, makes thequestion practical, obligatory and immediate and one that demands answers from legislatorsand policy makers and from society in general.
High levels of stigmatizing attitudes among the general public and even among clinicians
may be at the base of what Kelly calls ‘structural violence’, a pernicious and insidious formof discrimination and abuse, the resolution of which is translated into a deprivation of rights[37]. In fact, mental patients seem to have obtained the ‘anti-right’ to remain homeless onthe streets where they might freeze to death on winter nights, to be unemployed, or to beconﬁned to a permanent existence of poverty and charity. On the basis that an existence onthe street for lack of proper accommodation increases the risk of victimization, it may bethat mental patients are disproportionately robbed, mugged, raped, beaten up or murderedin the streets where they sleep. Should they react violently, many times in self-defence, theyare labelled dangerous and sent to prison. Mental patients have in effect been granted theanti-right to be criminalized and to receive treatment, if any, in prisons and penitentiaries, asopposed to hospitals, where most citizens expect to go if they fall ill [38]. The facile mannerin which mental patients have been criminalized reinforces the stigmatizing attitudes insociety. This has fuelled further fears that they are dangerous and unpredictable, and has ledto further calls for expansion of controls via commitment legislation [39, 40]. In turn, theharshness of their existence has a negative impact on their illness as biological, psychologicaland social elements are in close interplay to reinforce aetiological factors and to maintaindisease status.
Unfortunately, mental patients are caught in a tetrad of misfortunes – poverty, disenfran-
chisement, powerlessness and championlessness – that conspire to make impossible anyimprovement of their situation.
Mental patients are usually found on the lowest rungs of the socio-economic scale. Men-
tal illness seems practically a synonym for poverty . Their illness impacts heavily on their
employability as it attacks before many of them achieve their developmental potential,thereby truncating their education and reducing their marketability. To complicate matters,accessing prompt treatment is difﬁcult for young persons. Poor knowledge of the natureand presentation of mental conditions, confusion as to the nature of the symptoms, fear ofstigma among family members, lack of ﬁnancial resources, and a health system that doesnot provide sufﬁcient treatment options for the young unnecessarily prolong the periodbetween the appearance of the illness and the ﬁrst opportunity for treatment. For otherswho become ill later in life, the illness often leads to unemployment and catastrophic lossof income with a rapid fall in the socio-economic scale. Oftentimes, even claiming disabil-ity insurance, which has been paid for eventualities of this nature, becomes a nightmare.Insurance companies tend to regard mental health claims suspiciously, curtailing treatmentoptions, and causing the person to incur unnecessary legal costs for experts to redress theinjustice.
Politically, mental patients are disenfranchised. They have no voice. In some countries,
they have no right to vote and in those where they can, because of their mental condition, theyﬁnd it difﬁcult to enter the electoral registries; many simply have no address and, having nohome address, they cannot vote. In comparison with other patient groups, such as those forbreast cancer, prostate cancer, AIDS, heart disease, chronic obstructive pulmonary disease(COPD), which are capable of mounting lobbies and carrying out political activism in orderto improve their access to better health care, lobbying and political mobilization are hard to

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8 THE RIGHTS OF A POWERLESS LEGION
organize among the mentally ill. The families of mental patients are themselves affected.
Many live in poverty, so that they too have little political inﬂuence. Disenfranchisement and
lack of voice render social problems invisible so that the plight of the mentally ill or theirfamilies seldom enters the sphere of political debate. This results in neglect of mental healthsystems, poor budgetary allocations, inadequate facilities and utter disregard for their socialsituation.
Powerlessness of the mentally ill often stems from the nature of the symptoms that
consume their energies and compromise their ability to participate in social and politicalactivities. Seriously ill mental patients are too preoccupied with their delusions and hal-lucinations, may be too paranoid to even consider trusting others in any form of groupaction, too disordered because of manic behaviour, or too depressed to even care, and thechronically ill are too preoccupied with their own conditions and about surviving to be ableto mount any concerted political action. Serious mental conditions are incapacitating anddisturb the appropriate modulation of affects and behavioural controls. These conditionsalso alter cognitive processes that are necessary to make sense of complex issues and toexpress opinions in a coherent fashion, especially if speaking in public, as most politicalactions require. The mentally ill are not just disenfranchised, they are totally alienated fromthe political system; they are powerless.
Finally, championlessness completes the misfortunes, for besides lacking a political voice
of their own, the mentally ill also lack political champions. Even when a leader or ad-vocate surfaces and argues for the mentally ill, the motivating force is not infrequentlyoutrage stemming from a personal situation, for example – oftentimes a close relative hassuccumbed to mental illness and the champion politician has to face the reality of inad-equate services. Unfortunately, fear of negative repercussions in political capital has ledpoliticians to hide the mental illness of their relatives or among themselves. A history ofmental illness is a major roadblock to seeking or remaining in public ofﬁce. In regardto clinicians who often feel that they have to confront the social reality of their patientsand who have a duty to advocate for them, if they do, they are seen as self-serving. Ifthey gain political ofﬁce, they move on to other issues as they do not wish to be type-cast as a single-issue politician hammering at something for which there is no politicalresonance.
Over the past several years, however, states have come to realize the depth and cost
of mental health conditions within their populations; this awareness has accelerated themomentum for mental health law reform. Such reforms, however, ought not to be restrictedto operational questions on the adequate level of services, nor to the problem of ﬁnancing,but should include a review of the human rights dimension of such systems. For, while theprotection of the human rights of mental patients seems to have become a priority in theinternational arena, as evinced from the growing body of international law in this area, theactual plight of mental patients does not seem to have improved, and in fact, seems to begetting worse, largely as a result of neglect at the national level
In her 15 January 2005 statement to the Open-Ended Working Group of the UN Com-
mission on Human Rights, the UN High Commissioner for Human Rights underscored theimportance of expanding our vision, both nationally and internationally, of the scope offundamental human rights:
Recognizing the status of economic, social and cultural rights as justiﬁable entitle-
ments is crucial to honouring the political, moral and legal commitments undertakenby States when the international bill of rights was adopted [41].

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HUMAN RIGHTS INFRINGEMENTS 9
Her comments reafﬁrmed the conception of positive social entitlements as justiciable hu-
man rights under international law (as enshrined in such conventions as the International
Convention on Social, Economic and Cultural Rights ) [42] and underscored the failure of
states to give meaningful effect to ‘second-generation’ rights. International law has, in manyrespects, led the way in advancing the rights of mentally ill persons. This advancement hastaken the form of both binding and non-binding international norms, as well as proposalsfor domestic legislative reform. International law ﬁnds its expression in either treaties orcustomary norms. It is under these treaties that human rights, including a right to health andsocial services, have ﬁgured prominently under international law.
Human rights under international law, however, have made the furthest progress with
respect to negative rights (that is, relative to states) than to citizens’ entitlements. Thus, theInternational Covenant on Civil and Political Rights (ICCPR) [43] has had a great impact
on the promotion of negative rights with respect to persons with disabilities. This covenant,which has been ratiﬁed by 151 countries, is among the most important multilateral treatiesadvancing ﬁrst-generation human rights. The covenant extends a number of protections tothe individual that are particularly relevant to mentally ill persons, in particular, Article 9which extends rights to individuals with respect to liberty and security of the person, andprohibits state action which arbitrarily restricts those rights [44].
On matters of secondary rights, Article 12 of the International Covenant on Economic,
Social and Cultural Rights (ICESCR) is perhaps the most signiﬁcant international source of
a ‘right to health care’ as it enjoins the States parties to the present Covenant (to)recognize
the right of everyone to the enjoyment of the highest attainable standard of physical andmental health (see [43]). Unfortunately, this covenant is subject to the limitation that, in
order to be effective for any citizen worldwide, its principles have to be given expressionand individually enacted by each country in its national legislation.
Another signiﬁcant development with respect to the development of positive rights to
health care is UN Resolution 46/119, the Principles for the Protection of Persons with
Mental Illness and for the Improvement of Mental Health Care (the ‘MI Principles’) [45].
These Principles speciﬁcally recognize the positive right of persons with mental illnessesto treatment. For example, Principle 1.1 speciﬁes that “[a]ll persons have the right to the
best available mental health care, which shall be part of the health and social care system ’.
Although it may be true that Principle 1.1, and the MI Principles generally, may be incapable
of grounding any positive rights claim against an individual state, it is nevertheless expressiveof a growing international recognition of the importance of positive rights, particularly wherethe rights of the mentally disabled are concerned.
Notwithstanding the existence of a growing body of international law both prohibiting
discrimination and limiting state interference with respect to people with disabilities, as wellas positive entitlements with respect to the provision of medical services, it is unclear whatpractical impact these resolutions have in the domestic sphere. As indicated, implementingnegative rights is, in general, not too difﬁcult as derelict states that do not comply are usu-ally identiﬁed and even sanctioned, but not so in regard to positive rights whose absence isthe most appalling in regard to mental patients. For example, in countries with establishedeconomies, health insurance companies openly discriminate against persons who acknowl-edge that they have had a mental problem [46]. Life insurance companies, as well as incomeprotection insurance policies make a veritable ordeal out of collecting payments due to tem-porary disability caused by mental conditions such as anxiety or depression. Many patientssee their payments denied or their policies discontinued. Government policies sometimesdemand that mental patients be registered in special ﬁles before pharmacies could dispense

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10 THE RIGHTS OF A POWERLESS LEGION
needed psychiatric medications. At a larger level, many countries dedicate only a pittance of
their health budgets to mental health and most developed countries provide only a modicumof funds from their national research budgets for research into mental conditions [47].
In developing countries, beliefs about the nature of mental conditions, sometimes en-
meshed with religious beliefs and cultural determinants, tend to delay needed treatment bypenalizing and stigmatizing not only the patients, but also their families, even when they areentitled to access treatment opportunities [26]. Within the Chinese culture, mental illnessis highly stigmatizing for the whole family, not just the individual afﬂicted. The emphasison collective responsibility leads to the belief that mental illness is a family problem. Thus,Chinese care givers may prefer to cope with mental illness within the context of the familyas long as possible. The downside to this approach is unnecessary delays in treatment andworsening of the mental condition [48].
In general, illness and disability due to mental disorders have received little attention from
governments in developing countries. Mental health services have been poorly funded andmost countries lack formal mental health policies, programmes and action plans. In 1988and 1990 two resolutions designed to improve mental health were adopted among Africancountries. However, a survey conducted two years later to follow up on what progress hadresulted from these resolutions unfortunately showed disappointing ﬁndings [26].
In Uganda, per capita yearly expenditure for mental illness is only US $ 4.00, well below
the US $10.00 recommended by the World Bank [49]. In Nigeria, excessive workloads,frequent transfers, responsibility without authority, and other inherently poor managementpractices are blamed for the poor mental health conditions of employees and the conse-quences if they happened to complain about their difﬁculties (50]. In the words of theWorld Health Organization, mental patients are ‘denied citizens’ [51].
Three levels of social interaction – stigmatizing attitudes, lack of or failure to implement
positive rights, and the tetrad of poverty, disenfranchisement, powerlessness and champi-onlessness – are essential to understand the vacuum that exists between ofﬁcial documentsand good intentions of the law against discrimination and the realities in the lives of mentallyill persons in modern-day society.
Consequences of stigma
The stigma of mental illness affects the requirements for care of good quality in mentalhealth, compromising access to care through perceptions among policy makers and thepublic that persons with mental illness are dangerous, lazy, unreliable and unemployable.Eventually, these attitudes impact on the willingness of authorities to provide proper ﬁnan-cial resources for their care so that a vicious circle forms, entrapping the mentally ill personand the family [52].
There may be some controversy about whether what is stigmatized is not the mental
condition as such or the mental patient, but the behaviours that they tend to display [53]. Onthe assumption that objectionable behaviours are part and parcel of the mental condition,this controversy appears Byzantine. Real-life perceptions and patients’ estimonials tell adifferent story about how it feels to have a mental illness.
Michelle, a vivacious 25-year-old ofﬁce worker, tells about her major disappointment
with her family and family friends who simply expected her to have an abortion whenshe announced that she was pregnant. They assumed that her schizophrenia wouldincapacitate her to deliver and to care for her baby. They were also afraid that her

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CONSEQUENCES OF STIGMA 11
medications could have teratogenic effects on the baby. She carried her baby to term
and is taking care of it despite the opposition of family and friends.
Michelle’s experience is not uncommon. For many persons with mental illness, the stigma
of their illness is worse than the disease and it spreads a cloud over every aspect of theirlives and further on the lives of other members of the family.
John, a 19-year-old university student, had to accept the termination of a relationship
he had just started with a girl from his neighbourhood. Her parents objected to therelationship and decided to send her to another city for her education, in part in anattempt to break up the relationship, once they knew that John’s mother’s frequenthospitalizations for the past several years were not due to ‘diabetes’, but to a manicdepressive illness. John described the experience with some resignation, ‘it seems asif I have to carry the sins of my parents’.
In the study by the Canadian Mental Health Association quoted above [23], mental
patients felt that social and family life (84%), along with employment (78%) and housing(48%), were the areas most commonly affected by stigma. In that survey respondents alsofelt excluded from the community (22%) and complained that stigma has a negative impacton their self-esteem (20%).
In a survey conducted among members of their own support organization by ‘survivors’
3
of mental illness in Thunder Bay, Ontario, Canada [54], housing, employment, and trans-portation in public buses were described as degrading and outright discriminatory.
‘I have to lie to my landlord to get a place to live, like tell him you are on disability, if it
is not visible or physical, they don’t take you. Even slumlords won’t take you becausethey don’t want psychiatrically ill people living in their buildings. ’
In this Report, ‘survivors’ found that ‘mental health barriers’ among the public often led to
stigmatization, prejudice and stereotyping and that they were not listened to, or understood.They also felt ignored, avoided or treated without respect and sensitivity. They reported thatthese attitudes could also be found during their interactions with social assistance personneland with clinical staff.
‘At the agency the staff talk about patients and how crazy they are. No wonder there
is such stigma in the community. ’
And another patient commented poignantly about health personnel:
‘At the hospital, they take your clothes away. They put you in pyjamas . . . it strips away
your identity. You know, we are not all crazy. We don’t all see the boogieman aroundthe corner. Some of us have legitimate complaints. But if you are always told “oh, youare just overreacting, you know, you don’t know what you are talking about” or stufflike that, after a while you start to believe that yeah, maybe I am. And you know, there
3Some mental patients’ self-help support groups in Canada and in other countries have used this term to bring attention to
their struggle for a more compassionate mental health system and better social acceptance.

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12 THE RIGHTS OF A POWERLESS LEGION
are some doctors who don’t know anything about mental illness and who cannot tell
an oesophagus from an asshole. ’
One newspaperman [55] describes his feelings after a bout of major depression:
Stigma was, for me, the most agonizing aspect of my disorder. It cost friendships,
career opportunities, and – most importantly – my self-esteem. It wasn’t long before Ibegan internalizing the attitudes of others, viewing myself as a lesser person. Many ofthose long days in bed during the depression were spent thinking, ‘I’m mentally ill. I’ma manic-depressive. I’m not the same anymore’. I wondered, desperately, if I wouldever again work, ever again be ‘normal’. It was a godawful feeling that contributedimmensely to the suicidal yearnings that invaded my thoughts.
Strategies to combat the stigma of mental illness
Four strategies have been identiﬁed as appropriate to combating stigma and discrimination:stigma-busting, education, contact and political activism to diminish or stop abuse of civiland human rights of mental patients.
rStigma-busting activities are usually undertaken by mental patient lobby groups or
support family groups and aim at identifying and denouncing negative and highlystigmatizing portrayals of mental patients in movies and the media. Often, lettersare written to the media or producers and, on occasions, rallies are mounted in frontof movie houses to protest. These groups, therefore, should remain vigilant and beready to denounce local or national news, advertisements or movies that stigmatize,ridicule or demonize people with mental illness as violent, unpredictable or dangerous.No evaluations have been conducted about the effectiveness of these confrontationalactivities, but from the point of view of lending a voice and undertaking political actionthey can be seen as serving a major need for mental patients themselves to let theirvoices be heard.
rEducational activities usually take the form of massive national campaigns aimed at
increasing knowledge in the general population about mental illness, its treatment andthe prospects for recovery. They can also be aimed at smaller audiences of identiﬁedstakeholders or groups with inﬂuence via pamphlets, conferences, presentations, andso on, on the nature of mental illness and the treatments available. National andinternational organizations and associations as well as national and local governmentshave come to appreciate the need to change attitudes toward persons with mentalillness and to sensitize the public to the notion that mental conditions are no differentthan other conditions in their origin and that diagnosis and treatments are availableand effective.
Campaigns like Changing Minds , organized by the Royal College of Psychiatrists
in the UK [56], are based on providing information to the public so as to dispel mythsand stereotypes about those with mental illness. This campaign has used leaﬂets,pamphlets, ﬁlms and other ways of mass communication.
In one well-known ﬁlm, 1i n4 , the message is direct and pithy; it emphasizes that
mental health problems can touch anyone, proclaiming that ‘1 in4could be your
Brother, your Sister. Could be your Wife, your Girlfriend . . . 1 in 4 could be yourDaughter . . . 1 in 4 could be me . . . it could be you! ’

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STRATEGIES TO COMBAT THE STIGMA OF MENTAL ILLNESS 13
Pamphlets produced for this campaign emphasize messages indicating that social
despair and isolation have replaced old methods of physical isolation:
For centuries people with mental illness were kept away from the rest of society,
sometimes locked up, often in poor conditions, with little or no say in runningtheir lives. Today, negative attitudes lock them out of society more subtly but justas effectively.
Similarly, a campaign in Australia by the National Mental Health Promotion and
Prevention Action Plan [57] through the Community Awareness Program (CAP) and
the Australasian Psychiatric Stigma Group aimed at improving mental health literacy
in the population. CAP was a four-year programme liberally funded to increase com-munity awareness of all mental conditions. Speciﬁcally, it had three goals: to positionmental health on the public agenda, to promote a greater understanding and accep-tance of those experiencing mental illness, and to dispel myths and misconceptionsabout mental illness. The programme had a built-in evaluation based on a benchmarksurvey and pre-/post-test tracking design. The most signiﬁcant results include the factthat while tolerant attitudes were consolidated, they did not increase; that there was aslight increase in the awareness of services; and that there was no clear evidence ofbehaviour change [58]. The Australasian Psychiatric Stigma Group has more modestgoals, mostly by linking consumers, providers, and many other interested groups in apublic evaluation of the impact of stereotyping and stigma on the lives of psychiatricservice-users, their carers, and the lives of providers [59].
SANE Australia is a national charity that helps people affected by mental conditions.
One major and famous feature of this group is the popular TV soap opera Home and
Away in which one storyline is about a young character who develops schizophrenia
[60]. SANE has a function similar to NAMI (National Alliance for the Mentally Ill) inthe United States [61] and CAMIMH (Canadian Alliance on Mental Illness and MentalHealth) [47]. They are all umbrella family groups that lobby for better education, moreresearch funding, and more accessible treatment opportunities for persons with mentalillness.
Similar programmes and groups can be found in other countries such as Germany
[62], the United States [61] and most recently, in Canada a newly established MentalHealth Commission [64] has announced the possibility of mounting a major nationalcampaign and programmes to combat stigma and discrimination. Two internationalprogrammes are those of the World Health Organization [65] and the World PsychiatricAssociation [66].
rContact refers to increased visibility of mental patients among particular audiences
in order to convey a sense that they are not always deranged, psychotic or seriouslydepressed and suicidal, and that they can act as normally as anybody else .Contact
and educational strategies are found in the two international programmes. The WHOprogramme ‘Stop exclusion. Dare to care ’ follows mostly an educational strategy with
elements of legal activism, at local levels and through local organizations. This pro-gramme aims at combating stigma and at rallying support for more enlightened andequitable structures for the care of those with mental illness and the acceptance of men-tal health as a major topic of concern among member states. This programme bringstimely information to correct the myths surrounding mental conditions such as thebeliefs that they affect only adults in rich countries, that they are not real illnesses but

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14 THE RIGHTS OF A POWERLESS LEGION
incurable blemishes of character, or that the only alternative would be to lock mental
patients in institutions. The programme also invites individuals, families, communities,professionals, scientists, policy makers, the media and NGOs to join forces and to sharea vision where individuals recognize the importance of their own mental health; wherepatients, families and communities will feel sufﬁciently empowered to act on their ownmental health needs; where professionals will not only treat those with mental illness,but will also engage actively in mental health promotion and preventative activities; andwhere policy makers will plan and devise policies that are more responsive to the needsof the entire population. Methodologies of this programme include the distribution ofpamphlets, posters, booklets and stickers, and through the many collateral organiza-tions and distribution channels open to WHO contact with patients and their families.
On its part, the WPA initiated in 1998 its Global Programme against Stigma
and Discrimination because of Schizophrenia. Full information on this programmeincluding training modules, and a full annotated bibliography can be found at thesiteOpen the Doors (www.openthedoors.com) some attached as appendix to this
book. Although circumscribed to schizophrenia, the results of the programme inthe different countries where it has been implemented are equally applicable toany other mental condition. The programme was ﬁrst pilot-tested in Calgary andAlberta, Canada, in 1998, and has now been established in over 27 countries in allcontinents. This programme targets different audiences according to location, butdepends heavily on local action groups that organize themselves to plan and initiateprojects that mobilize local resources into action to combat the stigma associatedwith this disease. Education at a local level is a major element of this programme, butit is possible that contact is its main characteristic as patients and their families areco-participants and active players in all activities. Contact is also encouraged throughspecial programmes such as Partnership where mental patients are coached to go to
schools or to businesses to speak about their conditions or theatre activities whereagain mental patients are the actors and perform in front of live audiences.
rPolitical activism includes a systemic and concerted effort to bring to the attention of so-
ciety and various levels of government the plight of mental patients and to lobby for bet-ter access to care and other services while promoting changes in practices, laws or regu-lations considered discriminatory against mental patients. Political activism forms partof the two international programmes. The WHO programme Stop exclusion. Dare to
care aims at providing incentives to national governments and health care organizations
to change policies and to become actively involved in the reorganization of servicesand in the development of appropriate mental health policies. The WPA programmeOpen the Doors also has a major political activism component. The programme in Cal-
gary lobbied the National Hospital Accreditation agency to change its best practicesrequirements regarding management of mental patients at Emergency Departments ingeneral hospitals and has managed through presentations of its members to be activein the Federal Government lobbying for a National Commission on Mental Health.
Conclusions
Empowerment is intrinsic to the mental health of communities. The support and involvementof communities in the development, implementation and organization of their own healthstructures and programmes has led to the realization at the community level of the impact

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REFERENCES 15
and the ramiﬁcations to health of social scourges such as drug and alcohol abuse, family
and social violence, suicide and homicide, and mental illness.
Centuries of prejudice, discrimination and stigma, however, cannot be changed solely
through government pronouncements and legislative ﬁats, important as they are. The suc-cessful treatment and community management of mental illness relies heavily on the in-volvement of many levels of government, social institutions, clinicians, care givers, thepublic at large, the patients or ‘consumers’ and their families. Successful community rein-tegration of mental patients and the acceptance of mental illness as an inescapable fact of oursocial fabrics can only be achieved when communities take control and become masters oftheir own mental health structures, programmes, services and organizational arrangements.
There is a need, therefore, to engage the public in a dialogue about the true nature
of mental illnesses, their devastating effects on individuals, their families and society ingeneral, and the promises of better treatment and rehabilitation alternatives. An enlightenedpublic working in unison with professional associations and with lobby groups on behalfof persons with mental illness can put pressure on national governments and health careorganizations to provide equitable access to treatment and to develop legislation againstdiscrimination. With these tools, communities could then enter into a candid exchange ofideas about what causes stigma and what are the consequences of stigmatizing attitudesin their midst. Only these concerted efforts will, eventually, dispel the indelible mark, thestigma caused by mental illness and the associated discrimination that is the basis for thedenial of rights and entitlements to mental patients.
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2Cross-Cultural Aspects of the
Stigma of Mental illness
Bernice A. Pescosolido1, Sigrun Olafsdottir2, Jack K. Martin1,3
and J. Scott Long1
1Department of Sociology, Indiana University, Bloomington, IN 47405, USA
2Department of Sociology, Boston University, Boston, MA 02215, USA
3Karl F . Schuessler Institute for Social Research, Indiana University, Bloomington,
IN 47405, USA
Prepared for Stigma in Mental Health: Interventions to Reduce the Burden, J. Arboleda-
Florez and H. Stuart (eds.) John Wiley & Sons, Ltd. Based on a presentation at the WorldPsychiatric Association International Congress, October 2006, Istanbul. We acknowledgesupport from the Fogarty International Center, the National Institute of Mental Health andthe Ofﬁce of Behavioral and Social Science Research, all of the U.S. National Institutesof Health (Grant No.5 R01 TW006374). We also acknowledge ﬁnancial support for theIcelandic data from the Icelandic Centre for Research and the University of Iceland.
Introduction
As noted in Healthy People 2010 [1], a striking ﬁnding of the landmark Global Burden
of Disease Study [2] lies in the world-wide impact of mental illness on overall health andproductivity. Profoundly under-recognized, mental illness constitutes 11% of the globalburden of disease, with major depression alone currently ranking fourth and expected torise to second by 2020. In some regions of the world (e.g., Western Paciﬁc), mental disordersalready represent the largest contributor to the total disease burden, and there is great concernwith the “mortality crisis” related to mental illness in Eastern Europe [3].
In the face of these concerns, the World Health Organization’s (WHO) International Pilot
Study of Schizophrenia (IPSoS), the International Study of Schizophrenia (ISoS) and theStudy of the Determinants of Outcomes of Severe Mental Disorders (DOSMD) have alldocumented enormous heterogeneity in the outcomes of mental illness within and acrosscountries [4–7]. While it is generally agreed that the reasons for these differences are “farfrom clear” [5], one predominant explanation revolves around culturally deﬁned processes.Scholars and policymakers alike suggest that stigma may be the reason behind such ﬁndingsand lies at the root of recovery from mental illness [8]. As such, understanding the culturalcontexts that facilitate good outcomes may offer a lever for stigma reduction. In particular,whether individuals and others around them recognize mental illness, stigmatize theseconditions and support seeking care is critical, since each represent key aspects of culturethat can inﬂuence the outcome of mental illness [9,10].
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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20 CROSS-CULTURAL ASPECTS OF THE STIGMA OF MENTAL ILLNESS
Not surprisingly, there have been calls for systematic, comparable studies of stigma
within and across social and cultural contexts in order to understand its origins, meaningsand consequences [3, 4, 11–13]. Despite these calls and ﬁndings that document the per-vasive existence and impact of stigma in different countries [14–18], we know relativelylittle about the cross-cultural distribution of stigma. Researchers across the globe have col-lected data on stigma, but differences in samples (often student or provider samples) andinstrumentation make it difﬁcult, if not impossible, to compare ﬁndings. Thus, questionsabout whether and how the social reaction to mental illness varies across countries, whetherthe underlying operative processes are similar, and whether it maps onto the distribution ofoutcome heterogeneity remain unanswered. Not surprisingly, then, the important questionof whether these differences can offer a wedge into decreasing stigma’s negative impacts,also remains unanswered.
In sum, while the inﬂuence of cultural context on health and well-being is widely acknowl-
edged, the empirical literature on the cross cultural nature of stigma remains underdeveloped[19]. The World Psychiatric Association’s (WPA) Global Programme Against Stigma andDiscrimination Because of Schizophrenia [20] has encouraged the development of a com-parative catalogue of information and, to date there have been only a few large-scale studies(e.g., in Canada, the U.K., the U.S. and Germany). Even recent cross-national efforts, whilespringing from and being inﬂuenced by the WPA initiative, have not been linked in practice,making inference about comparative inﬂuences difﬁcult. Moreover, there has never been, toour knowledge, a methodologically coordinated attempt to understand the extent to whichmental illness is understood and stigmatized across countries (e.g., as an exception, see[21] for a comparison of the attitudes of German and U.S. high school students and mentalhealth staff).
To answer this call and begin to explore the insights that differences across societies
might offer to combat the stigma of mental illness, the Stigma in Global Context – MentalHealth Study (SGC-MHS) was launched with the support of the U.S. National Institutesof Health (through the Fogarty International Center in collaboration with the NationalInstitute of Mental Health and the Ofﬁce of Behavioral and Social Science Research) and theIcelandic Centre for Research. The SGC-MHS is a theoretically based and methodologicallycoordinated collaborative study of the levels and correlates of the stigma of major depressionand schizophrenia in 15 nations around the world.
Our goal here is to introduce the SGC-MHS by presenting early results from ﬁve European
countries (Bulgaria, Germany, Hungary, Iceland, and Spain), focusing on three issues closelyrelated to recovery – work, marriage and community acceptance. Since the ISoS foundthat the greatest differences in recovery across countries align with a nation’s level ofdevelopment, the descriptive ﬁndings presented here may offer a conservative view ofcross-national variation. By focusing on one continent, albeit with countries with varyingGDPs and political and health care systems, this ﬁrst exploration provides only an indicatorof the potential for comparative analyses to assist the development of stigma-reductionefforts.
We begin by reviewing what we know about stigma from the wide range of studies that
have been done. We then focus on studies of the outcomes of mental illness, ﬁrst targetingthe shift in emphasis from symptoms to “recovery” in its current usage, and then laying outarguments that have been made about the role of stigma in understanding outcomes. A briefdescription of WHO efforts on outcomes and some conclusions that appear in the scientiﬁcliterature follows. After providing the background orientation for the SGC-MHS, we lay out

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TAKING STOCK: STIGMA IN CROSS-CULTURAL AND HISTORICAL FRAMES 21
the design and methods for the study and present descriptive ﬁndings on Europe as outlined
above. We conclude by discussing the next steps for the SGC-MHS and its implications forstigma reduction.
Taking Stock: Stigma in Cross-Cultural and Historical Frames
Stigma is an attribute that marks a person as tainted, calls their identity into question,and allows them to be devalued, compromised, and considered “less than fully human”[22, 23]. Thus, stigma deprives people of their dignity, challenges their humanity, and inter-feres with their full participation in society [24]. Fabrega [15] describes the pervasivenessof stigma historically and cross-culturally, and empirical studies reveal both the similaritiesacross countries and changes over time. Importantly, the focus of the impact of stigmahas broadened as research has continued, and as “recovery” has become the primary goalfor practitioners, consumers, and advocacy groups. As Ware and colleagues have noted,too often persons with mental illness are “in the community, but not of it.” To increasesocial integration, they argue that both professionals and policymakers should focus on“connectedness” and “citizenship” [25, p. 469].
Below, we describe the widening concerns, the range of cross-national ﬁndings, and what
we have begun to learn about large-scale changes in stigma.
Domains and Domain Shifts in the Study of the Outcomes of Mental Illness
Etiological issues aside, earlier work from the medical sciences focused on basic issuesrelated to the “success” of the treatment of mental illness. Symptom reduction, rehospital-ization, mortality, and debates about the course of diseases such as schizophrenia [26, 27]dominated the research discourse in psychiatry, psychology and mental health services re-search. Goffman’s 1963 classic work [28] put stigma at the forefront of most social sciencediscussions of the outcomes of mental illness and received at least a passing mention inmost other research. Social scientists, including those in public health, tended to focus moreintensely on broader, community-based issues including lower quality of life, well-being,marriage and work possibilities, persistent social stress and low self-esteem [29–34].
However, with deinstitutionalization, the shift to community-based care, and growing
calls for multidisciplinary work, outcome studies have become more integrated, inclusive,and multi-faceted, documenting the profound effects of stigma, including interference withthe process of recovery [18, 35], the loss of legal rights [36], and discrimination, even amongpractitioners in both the general and mental health system [37, 38]. Researchers documenteddistressingly poor outcomes for mental illness cross-nationally. In Hong Kong, Mak andGow [39] found former psychiatric patients living in deprived conditions regarding housingand social life, and reported that the lives of these people existed on the margins of society[31] in Austria; also [40] in Canada). In Singapore, former patients reported that stigmaaffected their self-esteem, relationships and job opportunities [41]. In Israel [42] andAustralia [43], stigma resulted in an avoidance of mental health services [43]. Finally, thesestudies, as well as one from Nigeria, reported a greater social and medical vulnerability ofpersons with mental illness, compared to individuals with coronary disease, tuberculosis orcancer [44].
Only recently have we begun to get a picture of the larger, temporal dynamics of stigma.
Pioneering survey work, begun in the U.S. in the 1950s [45–48] and continued in the

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22 CROSS-CULTURAL ASPECTS OF THE STIGMA OF MENTAL ILLNESS
decades that followed, documented both the lack of understanding of mental illness, negative
attitudes surrounding issues of cause, treatment and outcome, and a high level of publicsentiment that favored the social rejection of persons with mental illness [21, 49–52].However, innovations in treatment, advances in scientiﬁc knowledge, shifts in the locus andphilosophy of treatment, and growth of a consumer advocacy movement shaped professionalperceptions of stigma, and were often hailed as decreasing community-based stigma. Yet,such conclusions were based, almost exclusively, on personal observation and anecdotalevidence ([53–58]; see [59] for a review).
In the 1990s, researchers took up the challenge of collecting contemporary evidence, and
where possible, matching it to data from the past. This growing body of empirical studiesgives cause for both hope and despair. Several high-quality, representative regional andnational studies report remarkably consistent ﬁndings, at least in Western nations. Theyindicate that the American, British, Irish and Canadian publics display a high level ofacceptance of scientiﬁc advances marking biological and genetic causes of mental healthproblems; an acknowledgement of, and differential response to types of mental health andsubstance abuse problems (e.g., depression, schizophrenia, addictions); and a recognitionof the existence of (and support for) effective treatments [14, 16, 17, 60]. Contact withpersons with mental health problems was broadly in evidence. About half of those studiedacross surveys reported knowing someone with a mental health problem or someone whohad used services or received some kind of treatment. In fact, in the American case, theMacArthur study was able to mark a real increase in public sophistication and knowledgeof these matters over the last 40 years [59, 61, 62].
Coupled with these positive ﬁndings, other data revealed a darker side to cultural changes.
A majority of the American and Canadian publics reported an unwillingness to work along-side or have intimate connections with persons with mental illness [17, 61, 63]. Manyalso agreed with images of persons with mental illness as unpredictable and dangerous.For example, in the U.S., where comparable data over time were available, Phelan et al.[59] reported an actual doubling, since the 1950’s, in spontaneous mentions of violence asdescriptive of persons with mental illness. Further, a majority of respondents appeared tobe quite willing to use legal means to coerce individuals into a range of treatments (e.g.doctors, clinics, hospitals), with near unanimous support for this approach when persons,despite the description of their problems, were labeled as “dangerous to themselves orothers” [64].
Similarly, studies in other countries that targeted shorter time frames also reported mixed
ﬁndings. In Hong Kong, public concerns decreased and knowledge of mental illness in-creased, but attitudes toward persons who had been treated in the mental health system hadbecome slightly more negative [65]. In Canada, Brockman and D’Arcy’s [66] restudy ofthe classic Cumming and Cumming study [47] found only slight improvements. In Greece,among a very select sample, Lyketsos and colleagues [67] found little change over a 2-yearperiod. However, Paykel et al. [68] found signiﬁcant and positive changes regarding publicattitudes toward depression in Great Britain from 1992 to 1996. In sum, this body of ex-isting research shows deep and widespread negative attributes, reactions, and affect towardpeople with mental illness, together with increasing sophistication regarding causes andtreatment.
In tandem with these research efforts, a set of clinically-based studies of the treated
population of persons with schizophrenia and other serious mental illnesses has raisedintriguing questions about stigma and its inﬂuence on outcomes. We turn to these studies.

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STIGMA AND THE INTERNATIONAL STUDY OF SCHIZOPHRENIA: THE PARADOX OF DEVELOPMENT 23
Stigma and the International Study of Schizophrenia: The Paradox
of Development
Technically, the WHO’s efforts to study schizophrenia represent a sustained research agenda
which began in the late 1960s and has spanned 30 research sites in 19 countries. Accord-ing to Hopper and his colleagues [69], the initial effort, the International Pilot Study ofSchizophrenia (IPSS), helped establish the feasibility of such large scale studies while thesecond, the Determinants of Outcomes of Severe Mental Disorder (DOSMeD) replicatedthe initial IPSS ﬁnding that individuals who had more positive outcomes were likely to befound in those countries crudely classiﬁed as “developing”. Further, the most recent study,the ISoS, attempted to follow-up on this striking ﬁnding while correcting, where possible,for earlier methodological limitations which hindered claims of generalizability. Like thestudies that came before, the ISoS continued to document better outcomes for those outsideof the “developed” world [6].
Given that a country’s participation in these studies is voluntary and unfunded through
a central source, the range and depth of these studies is truly impressive. That said, evenwith the ISoS, the set of sites involved is neither representative of existing countries norlarge in number. What becomes remarkable in the face of limitations is the robustness of theﬁnding noted above: Individuals who have been diagnosed as having schizophrenia or otherserious mental illnesses appear to report better outcomes if they live in regions of the worldconsidered to be “developing,” rather than those considered to be “developed.” Althoughsocial scientists have been increasingly skeptical of this particular conceptual distinction,the ﬁnding that individuals in Latin America, Africa or Asia seem to “do better” than thosewho live in the United States or Western Europe has been called “durable” [4, p. 836] and“the single most important ﬁnding” in comparative mental health services research [70].
To evaluate this ﬁnding in the context of the strengths and limits of the studies, Hopper
and Wanderling [4] have provided the most thorough consideration and analysis of thedeveloped-developing difference in the ISoS. Following up on the initial ﬁndings with data13 years later and with two additional samples, they ﬁnd that the outcomes of illness trajec-tories for study participants continue to favor the developing world. They go further to assessspeciﬁc sources of potential bias including differences in follow-up methods, the group-ing of data, ambiguities in diagnosis, selective outcome measures, and sociodemographicdifferences (i.e., gender, age) among the study participants. Finding that none of these canexplain the differences in illness course and outcomes, they suggest that further researchneeds to focus on “the cultural”, including “auspicious or alternative beliefs” [4, p. 843].
While Hopper and Wanderling are clear about the complexity of what “culture” means
to the entire course of an illness and the illness career it shapes, they nonetheless suggestthat it is the local context that matters. And, while they are skeptical about the abilityof structured questionnaires to get at the “local”, particularly everyday experiences, webelieve that such approaches can at least explore, if not capture, the local cultural contextof attitudes, beliefs, hopes and fears that surround the onset, recognition and response tomental illness. Such aspects of the non-material culture, according to the “new” sociologyof culture, represent tools in a cultural toolkit that individuals can draw from as necessaryto face life situations [71, 72]. This toolkit, shaped by the larger cultural climate, holds theresources that individuals, their families and others in the community use to understand theexperience of mental illness; categorize problems, prospects and sources of care, and makedecisions about their own behavior and, often, that of others [73, 74].

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24 CROSS-CULTURAL ASPECTS OF THE STIGMA OF MENTAL ILLNESS
In sum, whether these beliefs, attitudes and opinions reveal concern, fear, or treat-
ment efﬁcacy, they reﬂect the prejudice and the potential for discrimination which ﬁtsour common understanding of the stigma that surrounds mental illness. The SGC-MHSwas designed to take advantage of the opportunity to examine cross-national variationin cultural context and begin to calibrate how this one aspect of culture aligns with orcontradicts our concerns about the differences in outcomes. In the next section, beforewe describe the speciﬁcs of the SGC-MHS, we discuss how the WHO paradox, coupledwith other theoretical and empirical work on stigma and outcomes, motivated the speciﬁcstudy goals.
The Cultural Context of Stigma: How Do Countries Differ?
In the previous section, we brought together existing evidence of the breadth and depthof stigma across countries and provocative cross-national ﬁndings in what empirical workexists. Thus, while stigma is seen as “cross culturally ubiquitous” [24, 75], the earliest work[28] to the most recent [15, 24] conceptualizes stigma as a phenomenon shaped by culturaland historical forces. Early on, anthropologists described the different ways that culturesshape how individuals with mental illness are viewed and treated (e.g., [21, 76]). Morerecently, Leﬂey [77] contends that chronicity, itself, is a cultural artifact based, at least inpart, on differing worldviews, religious traditions, the role of alternative healing systems,and differences in the cultural value of interdependence.
Even studies that have documented differences in outcomes for persons with mental
illness across countries point to and call for further investigations across cultural contexts(see also [12, 24]). They suggest that future research must identify the collective propertiesof social, cultural, economic and physical environments that inﬂuence health and diseaseoutcomes. And, the sheer range of differences that Leﬂey [77] describes above can be enor-mous. For example, Sartorius [78] reports that the ratio of psychiatrists to the populationranges from 1:1,000-5,000 in the more developed societies (e.g., Europe) to 1: 50,000-100,000 in the developing world to only 1:5,000,000 in some African countries. Of course,this is not independent of the availability of economic capital in a society which needs tobe considered as well. For example, the WHO reports that countries in the Western PaciﬁcRegion devote less than 5% of their small health budgets to mental health and neurologicaldisorders [79, p. 121]. Thus, existing research suggests that we need to examine cross-cultural issues directly, rather than making assumptions about their correlation with broadcategories.
Even under the best designs, the ability to examine all of these issues fully is limited
by funding and by the willingness and ability of researchers in different countries to mounta study to provide information about cross-national differences. Indeed, the existence ofsufﬁcient research infrastructure to mount such research reﬂects both happenstance (e.g.,whether any individuals were trained in survey research methodology), and the exist-ing resources of a country that enable a national-level study. Thus, as we undertook theSGC-MHS, we sought to focus on coverage, comparability, and representativeness. Wedescribe the end result next.
The Stigma in Global Context – Mental Health Study: Foundations
The SGC-MHS basic questions are, at base, descriptive: Do people’s attitudes, beliefs andbehavioral predispositions vary in response to descriptions of persons with symptoms/

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THE STIGMA IN GLOBAL CONTEXT – MENTAL HEALTH STUDY: FOUNDATIONS 25
behaviors that meet criteria for two major mental illnesses – schizophrenia and depression?
And if so, how do they vary? The study does not target only conventional measures of stigma,per se, but seeks to understand what cross-national differences exist across a number ofcultural factors that may play a role in shaping the response to mental illness. These includethe proﬁles/levels of knowledge of mental illness, assessments of severity, recognition ofand attribution for the proﬁles provided, the degree of prior contact with persons with mentalillness, stigmatizing responses such as negative characterizations (e.g., dangerousness, longterm negative impact) or rejection (e.g., a desire for social distance), and evaluations ofthe need for and utility of treatment, including speciﬁc provider types (e.g., “doctors”,psychiatrists).
At this writing, we are still in the ﬁeld for many countries. So, we focus on our basic
question with a broad-brush, inductive look at one continent, Europe. However, even withthis preliminary look, we pay attention to the ﬁndings of the WHO studies: Does it appear,even at this point, that countries with higher levels of economic capital vary systematicallyin public attitudes toward mental illness?
The Design of the SGC-MH Project
Critical to a sound cross-national study is the assurance that, to the degree possible, eachcountry will approach the collection of data in the same way, both logistically and cul-turally. To help ensure this, the SGC-MHS was based on an existing infrastructure witha history of cross-national collaboration and strict rules for the data collection of theirown projects. The “platform” for the SGC-MHS is The International Social Survey Pro-
gram (ISSP). The ISSP is an on-going, annual program of cross-national collaboration
that brings together an international cadre of leading social scientists and expert surveyresearchers.
The SGC-MH study is not a part of the standard ISSP research program which involves
modules developed and approved by the participants. Rather, we used the ISSP as an orga-nizing platform to ensure the collection of high quality data, to select survey organizationswith an established record of routine and successful cross-national collaboration, and toensure a set of agreed-upon principles relative to sampling, data collection procedures,ﬁelding guidelines, codebook construction, data sharing, and archiving.
We established a translation procedure which began with ISSP standard approaches but
was supplemented with an in-house “cultural” review with a native speaker who was askedto give an oral translation of the target language instrument without having seen the originalEnglish language instrument. This allowed both an extra eye to culturally relevant languageusage that enabled us to correct poorly worded items caused by too literal translation, and anopportunity to ask people from that country questions about local idioms, the nature of themental health treatment system, and their perceptions about cultural differences that couldpotentially affect data collection. These individuals were not experts in the ﬁeld of mentalhealth and illness, nor were they professional translators; rather the primary criteria wereﬂuency in both English and the target language, and cultural ﬂuency gained from recentexperience living in that country. With the information gathered during these sessions,which averaged in length from 3 to 4 hours, we returned to each country’s survey teamwith a set of questions, suggestions and concerns to negotiate a ﬁnal instrument that wastailored for naturalness while maintaining the meaning necessary for comparability acrosscountries.

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26 CROSS-CULTURAL ASPECTS OF THE STIGMA OF MENTAL ILLNESS
Sampling and Fielding
Eligible respondents were non-institutionalized adults (i.e., eighteen years of age or older).
Individuals who resided in institutional settings (e.g., hospitals, prisons, etc.) were notincluded in the sample frame. The selection of sample elements across all nationalcross-sections was based on multi-stage probability methods. Within each nation, sampleweights were computed to offset any potential biases; however, analyses of the weighted andunweighted data revealed few systematic differences. Therefore, we utilize the unweighteddata, unless otherwise indicated.
The complexity of the vignette strategy required face-to-face personal interviews con-
ducted by trained interviewers. In line with ISSP procedures, all ﬁeld data collection effortswere closely monitored by survey center employees who also served as liaisons to theSGC-MH team for translation, data coding and preparation and delivery of the data ﬁle.
Interview Schedule
The SGC-MH interview schedule consisted of two parts. The ﬁrst 15 minutes tapped sub-stantive issues related to the stigma of mental illness, with reference to the vignette personand more generally with regard to mental illness. These questions were asked in a singleblock, and in identical order for each country. The second part of the interview schedule con-sisted of an agreed upon set of background variables that have been tailored to each nationby the ISSP. The Zentralarchiv (the ISSP designated Archive in Germany; www.issp.org)holds a volume describing these background and socio-demographic variables whichprovide the basis for a comparable, but tailored, approach. To respond to speciﬁc theo-retical, ethical, or cultural issues, any individual question was omitted after negotiationbetween the SGC-MHS team and survey center liaisons.
Vignettes
As discussed earlier, much of the SGC-MHS instrument involved assessing respondents’reactions to and evaluations of the individual described in the hypothetical scenario. Thesevignettes described a person meeting criteria for a DSM-IV diagnosis of major depression,schizophrenia, or a physical health problem – in this case, asthma. Within vignettes, the in-dividual’s race or ethnicity and gender were randomly assigned. Previous research suggeststhat this strategy avoids the problem of identifying and labeling a “case” for the respon-dent as someone who is “mentally ill”, and allows for better data collection on issues ofknowledge and labeling [63]. In the current study we relied on two such unlabelled mentalhealth vignettes (schizophrenia and major depression), and one physical health problem(asthma). Wording for the mental health problem vignettes was evaluated for accuracy bymembers of the nation-speciﬁc research teams and an international psychiatrist. Vignetteswere randomly assigned to respondents.
Unlike the ISSP where non-literal translations are discouraged, and in addition to the
second step cultural translation described above [82], the instrument was culturally tailoredon two distinct issues. First, the SGC-MHS is primarily vignette-based, describing (butnot categorizing) a person who meets clinical criteria for schizophrenia or depression. Thevignettes were initially developed in accordance with the DSM-IV but were revised forcross-cultural applicability by the group of survey research experts leading each country’seffort in an early international meeting in Madrid in 2004. Indeed, even the selection of

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THE PRESENT ANALYSIS 27
which disorders to include was decided during the Madrid meeting. The vignettes were
examined; rewritten for cultural applicability by a psychiatrist who had been involved inthe WHO studies; and approved by the larger group. Second, the labels applied in theinterview schedule were modiﬁed to include and/or substitute culturally relevant idioms(see below for a description of the vignette strategy). In addition, the list of “providers,”particularly regarding traditional or indigenous healers, was matched to parameters of thelocal formal and informal health care systems in each country.
The Present Analysis
For the analyses we present here, data came from 5 European countries and were col-lected by ﬁve survey organizations: 1) The Agency for Social Analysis, Soﬁa (Bulgaria);2) Zentrum f¨ ur Umfragen, Methoden und Analysen (ZUMA), Mannheim (Germany); 3)
TARKI, Social Research Center, Budapest (Hungary); 4) F´ elagsv´ ısindastofnun, Reykjavik
(Iceland); and 5) Analisis Sociologicos, Economicos Y Politicos, S.A. Madrid (Spain). Thesampling procedures described earlier yielded samples of 1,121 respondents in Bulgaria,1,255 respondents in Germany, 1,252 respondents in Hungary, 1,033 respondents in Ice-land, and 1,206 respondents in Spain. Thus, the combined ﬁve nation sample we examinehere is comprised of 5,867 respondents. Also, for the purposes of the current study, we onlyexamined responses to the mental illness vignettes (i.e., major depression and schizophre-nia). Thus, by eliminating respondents who received the asthma vignette, we reduced thenation-speciﬁc sample sizes by roughly one-third. The resultant samples that provide thedata for our subsequent analyses are comprised of 764 respondents in Bulgaria, 847 inGermany, 840 in Hungary, in 673 for Iceland, and 847 in Spain. Thus, the total effectivesample for the analyses reported here is comprised of 3,971 respondents, and includes onlythose who were asked to assess the depression and schizophrenia vignettes.
Measures: Stigmatizing Attitudes
In the analysis presented here, our dependent variables were cross-national public endorse-ments of stigmatizing attitudes toward persons with mental illness across three venuesimportant for recovery: the community, the workplace, and the family. Each dimension iscaptured by a single-item, coded such that higher scores on each item indicated the endorse-ment of more stigmatizing sentiments. First, community stigma was tapped by the question,
“A person like NAME has little or no hope of being accepted as a member of his/hercommunity”, coded 1=strongly agree, 2=agree, 3=disagree, 4=strongly disagree. Second,workplace stigma was measured by the question, “If a person like NAME is qualiﬁed for a
job, he or she should be hired like any other person”, also coded 1=strongly agree, 2=agree,3=disagree, 4=strongly disagree. Third, relational/family stigma was indexed by the ques-
tion, “How willing would you be to have NAME marry someone related to you?”, codedas 1=deﬁnitely willing, 2=probably willing, 3=probably unwilling, 4=deﬁnitely unwilling.
Results: What are the Levels of Stigma Across Five
European Nations?
The presentation of our analysis proceeds in two steps. First, we examine the distribution on
levels of the endorsement of the three stigmatizing attitudes for depression and schizophrenia

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28 CROSS-CULTURAL ASPECTS OF THE STIGMA OF MENTAL ILLNESS
combined, and by condition, without regard to nation. Second, we examine the distributions
for each condition for the ﬁve European nations individually.
Stigma in Europe
Table 2.1 displays the percentage of respondents residing in ﬁve European nations who en-dorsed stigmatizing attitudes relative to the hiring, community acceptance, and marriage ofpersons described with behaviors meeting DSM-IV criteria for depression and schizophre-nia. Several notable patterns emerge from these data. First, without regard to nation, overhalf of respondents (56.4%) report being unwilling to have a person with depression orschizophrenia marry into his or her family, and more than a third (33.7%) believe that per-sons with depression or schizophrenia have little hope of being accepted in their respectivecommunities. However, respondents report lower levels of rejection with respect to theworkplace. Overall, only about 1 in 5 respondents (23.5%) reported that a qualiﬁed personwith a mental health problem should not be hired.
The data in Table 2.1 also reveal a pattern reported in previous studies of public prefer-
ences for social distance from persons with mental health problems (see, for example, [63])that suggest that the public clearly distinguishes between persons described with symptomsof depressive disorders or schizophrenia. Regardless of the interactional venue (i.e., com-munity, work, or family [marriage]), across the board, respondents in our ﬁve Europeannations are signiﬁcantly more likely to report rejection of a person with schizophrenia,relative to a person with depression.
Table 2.1 Distributions on Stigma Attitudes for Five European Nations
Combined Depression Schizophrenia
%N%N% N
Don’t Hire, Even if Qualiﬁed
Strongly Agree 5.0 183 4.3 80 5.8 103Agree 18.5 674 15.2 285 21.9 389Disagree 54.4 1,985 56.9 1,065 51.7 920Strongly Disagree 22.2 810 23.6 442 20.7 368N 3,652 1,872 1,780
Unlikely to Be Accepted in Community
Strongly Agree 4.6 171 4.2 78 5.1 93Agree 29.1 1,079 24.7 465 33.6 614Disagree 47.6 1,769 48.7 325 46.6 852Strongly Disagree 18.7 692 22.5 422 14.8 270N 3,709 1,880 1,829
Willingness to Have Marry Into Family
Deﬁnitely Unwilling 27.2 963 23.0 408 31.4 555Probably Unwilling 29.2 1,032 26.4 469 31.9 563Probably Willing 31.0 1,096 35.4 628 26.5 468Deﬁnitely Willing 12.7 448 15.2 269 10.1 179N 3,539 1,774 1,765

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RESULTS: WHAT ARE THE LEVELS OF STIGMA ACROSS FIVE EUROPEAN NATIONS? 29
Stigma Differences Across Europe
Table 2.2 reports the percentage of respondents, by country, who endorsed stigmatizing
attitudes with regard to depression and schizophrenia for the same three items. For the mostpart these nation-speciﬁc estimates mirror the patterns observed in Table 2.1. Speciﬁcally,in each nation, regardless of the interactional venue (i.e., work, community, or family),respondents are more likely to prefer social distance from a person described as havingsymptoms of schizophrenia when compared to a person described as meeting criteria fordepression. Also as before, regardless of nation or disorder type, the lowest levels of rejectionare observed in the workplace setting, with higher levels of rejection reported in communityand family settings.
However, the ﬁndings suggest that there are distinctions that can be drawn between
the proportions of respondents in the ﬁve nations who are likely to endorse stigmatizingresponses. Indeed, for each social venue and both disorder types, the proportion of stigma-tizing attitudes differs signiﬁcantly across the ﬁve nations. One the one hand, the highestlevels of rejection are reported by respondents from the two Eastern European nations (i.e.,Bulgaria and Hungary) and Spain. On the other hand, respondents in both Germany andIceland report substantially lower levels of rejection. More speciﬁcally, almost one third toone half of the respondents in Bulgaria, Hungary and Spain believe that the individual de-scribed with schizophrenia should not be hired, compared to only 10 to 20 percent of thosein Iceland and Germany, respectively. A similar pattern, although with fewer individuals
Table 2.2 Percentage of Respondents Endorsing Stigmatizing Attitudes With
Regard To Depression and Schizophrenia Across Five European Nations Arrangedby Level of Development (GDP per capita, low to high)
Depression % Schizophrenia %
Don’t Hire, Even if Qualiﬁed
(Strongly Agree/Agree, combined)
Bulgaria 17.6 32.5Hungary 26.1 31.7Spain 29.8 43.1Germany 13.1 20.6Iceland 8.1 10.0
Unlikely to Be Accepted in Community
(Strongly Agree/Agree, combined)
Bulgaria 35.2 49.0Hungary 26.3 36.1Spain 30.4 40.2Germany 34.1 45.6Iceland 17.6 23.0
Willingness to Have Marry Into Family
(Deﬁnitely/Probably Unwilling, combined)
Bulgaria 56.4 73.7Hungary 61.6 70.6Spain 47.2 67.4Germany 46.8 54.9Iceland 38.0 50.2

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30 CROSS-CULTURAL ASPECTS OF THE STIGMA OF MENTAL ILLNESS
expressing rejection, is reported for those who received the depression vignette. The per-
centage endorsing social distance is generally higher for acceptance in the community andeven more so for marriage; but even here, one country stands out. In Spain, about 43%of respondents indicated an unwillingness to see individuals described with schizophreniato be hired; about 30% express similar concerns about those described with depression.So, while the pattern is not exactly the same across all venues and across the disorders,there are clear national differences, with Icelanders always anchoring the bottom. Here, thelowest proportion of respondents endorses stigmatizing responses.
Discussion: Preliminary Insights and Next Steps
As Link and Phelan [85] point out, stigma matters for public health because it is a social causeof disease which compromises a person’s ability to cope with mental illness, produces stress,and exposes them to other disease-producing conditions. The disadvantages with regard topower, prestige and social connections translate into the possibility that individuals withmental illness will have restricted life styles and life chances, including but not limited tosocial relationships, community living options, and citizenship rights [86].
The SGC-MHS was designed to follow up on insights of the WHO studies which sug-
gested that a lever for stigma reduction might be found in understanding whether there areplaces across the globe offering more auspicious settings for recovery from the challengesof mental illness. Are there cultures which can be characterized as less stigmatizing, thatis, offering more community inclusion and less rejection across critical arenas of life? Theearly picture that we report here from ﬁve European countries offers both encouragementfor cross-national differences but greater complexity than suggested by the original WHOstudies. That is, we do ﬁnd overarching differences, both by disorder and by country. Ingeneral, respondents report more stigma regarding schizophrenia than for depression.
Perhaps more surprising is the way the different European nations “stack up.” There are
clear and signiﬁcant national differences. But, these differences do not suggest that samedirection for level of development that the larger WHO studies suggested. Within Europe,in post-communist countries which have a lower level of development based on GDP percapita, more respondents perceive rejection for mental illness, while those in the moreeconomically advanced nations, particularly Iceland, report less rejection. These resultspoint to the need for a consideration of many other potential conditions that shape stigma;for example, the tradition of social welfare in democracies.
As a ﬁrst step, our analysis is intriguing but raises more questions than answers for un-
derstanding the cross-national dimensions of stigma. Considerations that are aligned alongan illness career model will shape our analyses of whether the assessment and recognitionof mental illness differs cross-nationally and whether labeling has differential effects onrejection. By having asked about issues from onset to recovery, we will have the possibilityof seeing where and how nations differ. Following up on these initial ﬁndings will likelypresent an even more complex picture, as more nations and more issues such as recognitionare added. But even these ﬁrst analyses suggest that unscrambling the patterns in these datamay help tailor stigma reduction efforts.
The public health ramiﬁcations of not knowing the underlying workings of stigma are
costly. According to the U.S. Surgeon General, stigma is the “most formidable obstacle tofuture progress in the arena of mental illness and health” [87, p. 3]. Similarly, the WHOand the World Psychiatric Association mark public stigma and discrimination as thecritical

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REFERENCES 31
barriers to the appropriate care and inclusion of persons with mental illness in society,
and as the “chief nemesis” to improving and assuring the quality of life for persons withsevere mental illness [79, 88]. The existing gaps in scientiﬁc knowledge leave little roomto estimate the malleability of stigma by marking its cross-national variation and to offerscience-based approaches that attempt to change the larger culture and climate of commu-nities. The SGC-MHS attempts to address the important goal of understanding the etiologyof stigma to assist in the development of “evidence-based interventions to prevent or miti-gate stigma’s negative effect on the health of individuals, families and societies worldwide”([89]; http://www.nih.gov/news/pr/aug2002/ﬁc-28.htm). Along with the WHO efforts andthose of the Institute of Medicine, we agree that research on both the individual and col-lective properties associated with health communities is expected to provide opportunitiesfor prevention and/or intervention at lower cost than traditional individual level strategies[90, p. 91].
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88. Sartorius, N. and Schulze, H. (2005) Reducing the Stigma of Mental Illness: A Report from a
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3The WPA Global Programme
against Stigma andDiscrimination becauseof Schizophrenia
Norman Sartorius
University of Geneva, Switzerland
The World Psychiatric Association (WPA) Global Programme against Stigma and Dis-
crimination because of Schizophrenia was started in 1996, when I became President of theWPA. Initially, we saw it as an opportunity (and a necessity) to produce a policy docu-ment, a declaration similar to the Madrid Declaration and other ofﬁcial statements of theWPA.
From initial reactions of many with whom this idea was discussed it became clear that
it would be better to develop a programme to ﬁght stigma rather than to make a statementabout the need to remove it. It seemed that such a programme was timely, that it wouldattract collaboration from many countries and that it would bring together mental healthprofessionals and others who need to be involved in mental health care and are oftenworking apart. We were fortunate to obtain an unrestricted educational grant from Eli Lillyand Company that made it possible to start the programme without delay and support itsearly development.
Thus, in 1996 we brought together a group of people whom we felt could help in the devel-
opment and implementation of a programme against stigma. The group that met in Genevaincluded psychiatrists, social scientists and communication experts as well as representa-tives of governments and of family and patient organizations. It reviewed the preliminaryplans for the programme and identiﬁed individuals and organizations that could be focalpoints for its development at country level. It also conﬁrmed that the proposals about thedevelopment and structure of the programme were reasonable and likely to be successful.
Canada was the ﬁrst country to implement the programme and served as its pilot site.
Spain and Austria were the next two countries to join and, soon after, a number of othersites followed in other countries (see Table 3.1).
As time went by, the level of activity in the sites varied. Activities were reduced in some
of them for a host of reasons – political, personal and institutional. In others, action grewstronger and the programme that was initially restricted to a limited community expanded
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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38 THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA
Table 3.1 List of countries participating in the programme
The Americas Europe Asia∗
Brazil Austria India
Canada Czech Republic JapanChile GermanyUnited States Greece
Italy
Eastern Mediterranean Poland
and North Africa Romania
Egypt SlovakiaMorocco SpainTurkey Switzerland
United Ki ngdom
∗SANE Australia (formerly Schizophrenia Australia Foundation) is
working in partnership with the WPA programme.
and covered the whole country (e.g. Spain). The involvement of a large number of groups
proved to be invaluable for the programme because it ensured that at any given time therewere a number of sites with lively and vigorous action that permitted the programme as awhole to continue its robust existence over a long period.
The results of the pilot project in Canada were immensely helpful for the further devel-
opment of the programme. They showed that it is of central importance to involve peoplewith schizophrenia and their families in selecting targets for the programme. They alsoindicated that the success of the programme should not be judged by changes of attitudealone; changes in the behaviour of all concerned were a much more difﬁcult but also moreworthy objective.
The programme adopted an operational model of development of stigma and its conse-
quences [1, 2] (see Figure 3.1). The model implies that a marker (a visible abnormality, a di-agnostic label, the colour of skin) that allows the identiﬁcation of a person can be loaded withnegative contents by association with previous knowledge, information obtained throughthe media, memories of unpleasant incidents, heard or seen. Once the marker is loaded inthis way, it becomes a stigma and anyone who has it will be stigmatized. Stigmatizationmay lead to negative discrimination which, in turn, leads to numerous disadvantages interms of access to care, poor health service, frequent setbacks that can damage self-esteem,and additional stress that might worsen the condition of the person who is ill or otherwisestigmatized, and thus amplify the marker, making it even more likely that the person willbe identiﬁed and suffer from discrimination and other consequences of stigma.
This cyclical model also implies that an intervention at any point might stop that process.
Thus, if it proves impossible, for example, to remove stigma, it is often possible to focuson removing discrimination by legal and other means. In other instances, it might becomepossible to improve treatment and rehabilitation services to a level at which they can offerhelp to the persons who have the disease and their families and support them in living withthe illness by protecting their self-esteem and functioning in social roles. Sometimes itis possible to remove the marker – as in the case with extra-pyramidal symptoms that canappear as side effects of certain types of medications but do not appear with other treatments.

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THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA 39
Marker
Loading
Stigma
Discrimination
DisadvantagesLess self-esteemGreater disabilityLess resistance
Figure 3.1 The vicious cycle of stigmatization
In some instances, there is enough time and opportunity to educate the community in a
manner that will decrease the negative loading of the marker.
An important issue at the very beginning of the programme was its scope. Eventually,
it was decided to concentrate on stigma linked to schizophrenia rather than to all mental
illnesses. There are strong arguments for both of these two options. It could be argued
that taking all mental illnesses as a target might – if the programme is successful – help
incomparably more people than the prevention or removal of stigma concerning a single
disease such as schizophrenia. A point in favour of the broad focus could also be that the
general public does not make a distinction between mental illnesses and that, therefore,
engaging support of a wide section of the population might be more difﬁcult if a psychiatric
label is used in deﬁning the focus of action. Targeting many mental diseases, it was felt,
might help to engage a larger number of patient and family organizations. The question of
equity also arises if only one disease is selected as a target for action: why should other
illnesses not receive the same beneﬁts from such a programme?
The arguments for taking only schizophrenia as a focus are also numerous and seem
to prevail over the reasons for taking all mental diseases as the target. Schizophrenia as a
syndrome is a paradigm of mental illnesses and the general public, when asked to describe
a mentally ill person, invariably lists symptoms such as delusions and hallucinations –
hallmarks of schizophrenia – as the deﬁning features of a ‘madman’. Stigma related to
schizophrenia is more pronounced than the stigma attached to, say, anxiety states or dementia
of old age. Success in the prevention or removal of stigma related to schizophrenia would
show the way to those ﬁghting to remove stigma related to other mental illnesses and indeed
to other stigmatizing illnesses, for example leprosy or syphilis.
The selection of schizophrenia as the central focus of the programme makes the deﬁnition
of the programme activities less complicated and the evaluation of success easier. Although
some non-governmental organizations – for example the World Schizophrenia Fellowship
– did excellent work to help people with schizophrenia there was when the WPA pro-
gramme was initiated no coordinated international project by a professional or governmental
organization that dealt with the disease and could attract the attention of governments and
other authorities to the need to support care for people with schizophrenia and their families
– arguably the most wretched group among those struck by mental illness.

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40 THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA
The structure of the programme was kept simple. A Steering Committee1guided the
development of the programme and the ofﬁce of the Scientiﬁc Director helped in the day-to-day operation of the programme. The Steering Committee made decisions about programmecoordination, which was entrusted to its Scientiﬁc Director located in Geneva, Switzerland.The ofﬁce of the Director maintained continuous communication with the heads of thecollaborating sites whose representatives met annually to review progress and identifyareas in which common action might be useful. The central ofﬁce also established fourworking groups
2that were entrusted with the development of documents, reviews and other
materials supporting action at country level. The products of the working groups were usedto build the programme or independently. Thus, for example, one of the groups has produceda description of schizophrenia written in simple language for use by the general public andthe media. The book has been translated into a number of languages, e.g. Spanish [3] andpublished even in countries that did not participate in the programme.
At country level the programme was entrusted to a country action group. A rule of thumb
was that the group should be of a size that would allow its members to go for a meal togetherin a single car. Such an action group was to ensure support of a larger group of patrons– persons of importance and inﬂuence – that could be invited to become members of theadvisory group at country level and were likely to be willing to meet at regular intervals(say, every six months), to receive reports of the action group and to help it by advice,comment and inﬂuence to carry out the programme.
The decision to proceed in this way was based on experience from previous international
collaborative work which strongly suggested that the guarantee of success for a studyor other project at country level is not a strong commitment of the government or of aninstitution, but the decision of an individual or of a small group of people to carry out theproject. Support by institutions and governmental agencies is helpful and often necessary,but never sufﬁcient. The programme thus expanded to any country in which there was asmall group of people willing to lead the action and maintain it over years.
The meeting held in Geneva in 1996 recommended that the ofﬁce of the Scientiﬁc Director
develop a set of speciﬁc plans that would be offered to the action groups in the countriestogether with an estimate of the time necessary and allowable for the execution of eachactivity in the plan. This would essentially be what has been described as a collaborative
project [4], in which the steps in the programme are accepted and implemented by all theparticipating sites in the same manner. It was felt that this would help to maintain the identityof the programme and facilitate the exchange of experience and evaluation.
As it turned out this decision had to be modiﬁed. Consultations with the potential heads
of action groups in the countries and the results obtained during the pilot programme inCanada led to the development of a strategy that seemed dangerously similar to a plan forconfusion but, in time, proved its worth and became a hallmark of the programme.
In brief, rather than developing a detailed, comprehensive plan of action at the centre, the
Scientiﬁc Director’s ofﬁce deﬁned the general principles of the programme and suggestedhow the programme should be administered in order to support country activities, butallowed the sites to select speciﬁc targets for action and its speed. The targets at the countrysites were chosen relying mainly on the advice of persons most directly concerned with
1Composition of the Steering Committee: Norman Sartorius (Switzerland), Chairman 1996–1999 ,Scientiﬁc Director 1999–
2005 ; Juan J. L´ opez-Ibor (Spain), Chairman 1999–2002; Julio Arboleda-Fl´ orez (Canada), Ahmed Okasha (Egypt), Chairman
2002–2005; Hugh Schulze (United States), Costas N. Stefanis (Greece), Narendra N. Wig (India).
2For the list of the members of working groups, see [2].

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THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA 41
problems related to stigmatization and discrimination: in each of the sites the ﬁrst step of
the action groups was an exploration of the consequences of stigma and discrimination forpeople with schizophrenia, their families and others who were involved in the provision ofcare and in the rehabilitation of those disabled by schizophrenia and its consequences. Thispreliminary exploration usually resulted in a long list of complaints and problems reportedby those concerned. The action groups then examined these complaints and problems anddivided them into those due to stigma and discrimination and those that had little to do withthem. From the former list of problems the action groups selected targets for using severalcriteria: the probability that the problem can be resolved relatively quickly, the likelihoodthat the problem can be tackled by the action groups (with the support of the local advisorygroup), the availability of support for work on that problem – either in the form of advocacyor concrete support of an institution or agency, and the likelihood that the action undertakenwill help to attract attention and support from many sources and potential partners.
The results of proceeding this way were that the programme sites selected different targets
for action (see Table 3.2) and that the speed of their progress varied. This might be seenas a disadvantage, particularly for reporting about the programme and for its evaluation.These shortcomings are, however, signiﬁcantly outweighed by the facts that it is easierto ﬁnd support for a programme that is locally relevant and that the Action groups andother participants in the programme knew that they were working on problems particularlyimportant for their areas. A moral advantage of this way of proceeding was also that actionwas harmonious with one of the main objective of the programme – that of contributingto the self-esteem of the persons affected by schizophrenia by giving them an opportunityto decide on the course of action and to participate in it, thus treating them as equal andmaking them partners in programme development.
To maintain easy communication and an overall sense of the programme, the ofﬁce of the
Scientiﬁc Director drafted instruction guidelines giving a sequence of steps in programmesat country level. The sequence – for example, concerning the formation of the local Actiongroup, the collection of information, the establishment of the advisory group – was thesame for all sites, but the timing of the steps as well as the selection of activities at countrylevel was left to the decision of the local Action groups and their partners. A website wasestablished in 1998 to facilitate the spread of information and communication about theprogramme.
The question of evaluation of success attracted much attention during the ﬁrst meeting
in Geneva and on several occasions after that. The usual comparisons of achievements withthe objectives seemed appropriate in some instances but not in others. The main objective ofthe WPA programme was not to carry out a multinational study but to develop an action pro-gramme of demonstrable usefulness and a model from which others could learn. The aim ofbeing an action programme carries two other obligations with it: ﬁrst, that progress should bemeasured by the extent to which activities against stigma and discrimination become part andparcel of the routine country health and mental health programmes; and second, that thosewho have identiﬁed problems and difﬁculties because of stigmatization and discrimination– persons suffering from schizophrenia and their carers – see that some of their difﬁcultiesdiminish and some of their problems related to stigma vanish. It was thus a change of thebehaviour of people, both of those who had the diagnosis of schizophrenia and of all others,a change of rules of law and similar indications that were selected rather than other earlieroften used indications, e.g. changes in attitudes. The second of these obligations imposesthe need for evaluation of the success of each of the component activities so that those whowant to learn from the WPA effort can select those of proven usefulness in another setting.

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42 THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA
Table 3.2 List of anti-stigma interventions by participating sites. Adapted with permission from
table 19.2 of Sartorius N. and Schulze H. (2005), Copyright Cambridge University Press, 2005
Austria Brazil Canada Chile Germany Greece Japan Italy
Survey of
Knowledge/Attitudes×× × × × × ×
Speaker’s
Bureau×× × × × ×
School
Education(Primary &/orSecondary)×× × × × ×
Educating
Psychiatrists×× × × × ×
Educating GPs ×× × ×
Educating
other HealthCareProfessionals×× × × × × × ×
Educating
Journalists×× × × × × ×
Stigma
Busting/StigmaWatch
∗×× × ×
Educating
Clergy×× × ×
Publications in
ScientiﬁcJournals×× × × × × ×
Publications in
Newspaper/Magazines×× × × × × ×
Radio Programs ×× × ×
Television
Programs×× × /×
Anti-stigma
Awards×× × ×
Theatre
Presentations×× × ×
Story
Workshops××
Art
Presentations/Competitions×× ×
Educating
Families×× ×
Other Education Open-Door-Day Beneﬁt concert Focus Groups
with in the Hospital with Nana with PatientsPublic Beneﬁt Jazz Mouskouri and FamilyMovie Concert MembersScreening/Festival
(continued )

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THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA 43
Table 3.2 (Continued )
Morocco Poland Slovakia Spain Turkey UK US
Survey of
Knowledge/Attitudes××× × × × ×
Speaker’s
Bureau×× × × × ×
School
Education(Primary &/orSecondary)×× ×
Educating
Psychiatrist×× ×
Educating GPs ×× ×
Educating other
Health CareProfessionals×× × ×
Educating
Journalists×× × ×
Stigma
Busting/Stigma Watch××
Educating
Clergy×
Publications in
ScientiﬁcJournals×× × × × ×
Publications in
Newspaper/Magazines××× × × × ×
Radio Programs ××× × × ×
Television
Programs××× × ×
Anti-stigma
Awards××
Theatre/Dramaturgic
Presentations
Story
Workshops×
Art
Presentations/Competitions×× ×
Educating
Families××× × ×
Other Educating Day of Solidarity Media Cell Website Short Films Books
Patients with People for TV
Suffering fromSchizophrenia
Educating Cinema
Patients Slides
Public Bus Ads
Lectures Public
Media Lectures
Guide
∗Refers to arrangements that permitted identiﬁcation of developments or events that could worsen the stigma
of mental illness and its consequences and to express protest or undertake other steps to prevent harm fromsuch an event (e.g. producing or showing a movie portraying a mentally ill person in a very negative manner).

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44 THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA
The results of the programme and details about its implementation can be found in its
overall report [2] and in the numerous publications produced by the Action groups in theirrespective countries.
3Taking those results into account and recalling what the programme
groups reported it is now, ten years after the initiation of the programme, possible to makerecommendations concerning the development of a concerted effort to ﬁght stigma becauseof an illness. These include the following.
First , an anti-stigma programme has to be long-lasting and not a campaign. Profoundly
embedded attitudes and social arrangements including laws cannot be expected to changeovernight. Short-lasting paroxysms of public education or other interventions often leavepeople who expected a great deal from a campaign more unhappy and dissatisﬁed after itthan they were before it. Anti-stigma programmes must therefore – because they must lastover time – devote a good part of their energy to becoming a routine part of health andsocial service plans and institutions.
Second , a programme against stigma must be successful if it is to retain the loyalty of
those who work in it. This means that the goals of the programme have to be stated in broad,overarching terms but that speciﬁc plans for immediate application have to be modest insize and have good chances to succeed. This also means that the goals of the programmemust have local relevance and that its success will serve as an argument helping to ﬁndfurther support and funding for the programme.
Third , the programme must deal with the problems experienced by the people who have
the illness and by their family. While the process of stigmatization is similar in differentsettings, what bothers people is different. The best way to identify what is most disturbing –and should therefore be among the targets of the programme – is to ask those who are mostdirectly affected about their experience and about changes that they would see as beingimportant in terms of improving their situation.
In most parts of the world, there are no systematic studies that document the everyday
problems and experiences of consumers (of mental health services); yet, without such data,it is likely that much energy will be spent in action that will give more satisfaction to thosewho have undertaken it than to those whom it was supposed to serve.
4
Fourth , the programme should not be a programme of the mental health service system
alone. The participation of others – representatives of different sectors of the governmentand of community members – is not only important because it strengthens the programme:a broad involvement also makes it easier to intervene in situations that are normally notaccessible to mental health workers.
Working as a broadly based, multi-sectoral team also brings people who are not di-
rectly concerned with mental illness into contact with mental health service personnel, withconsumers, with their families, and with others who are concerned with mental illness.Narrowing the gap that exists between psychiatry and the rest of medicine and society isof great importance for the survival of the programme and for an improvement of mentalhealth care.
Fifth , the programme should employ those who have had experience of schizophrenia,
directly or in their family, in the day-to-day functions of the programme. As examples fromthe participating sites show, the active involvement of people who have the experience ofsuffering from the illness can reveal areas of need and remedial measures to which medical
3References to these publications are given in the report on the programme [2].
4To obtain this information a number of WPA programme sites have joined efforts in a new project, speciﬁcally designed
to develop instruments for recording experiences of people with schizophrenia and their families (the INDIGO project). Moreinformation about this project can be obtained on request from the author.

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THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA 45
professionals might not otherwise have given much priority. Just as important, their active
involvement in the programme acts against the loss of self-esteem, a loss that increasesstigmatization of those who are ill by themselves, and represents a great obstacle to anyeffort to rehabilitate a person who has suffered from a mental illness.
Sixth , it has been critical to develop a model that can be easily understood and used in
both the planning and evaluation processes of the programme. The vicious circle model thatwas developed for the WPA programme is shown in Figure 3.1. One of the advantages ofthis model is that it can be used to counteract the reluctance of those involved in supportinga programme against stigma because its main message is that there are numerous entrypoints for action against stigmatization and its consequences and that therefore no onecan be excused from helping. Potential partners in ﬁghting stigma can be shown concreteareas where their expertise can apply in breaking the vicious cycle at different stages ofdevelopment. Similar models of vicious circles have been constructed for the effects ofstigma of the family of the person who is ill and on the mental health service [2].
Seventh , one of the many enemies of long-term projects is the fatigue and burnout that
leaders of the programme experience. Every effort should therefore be made to add acomponent to the programme to prevent burnout.
The involvement of a large number of centres helped to ﬁght burn-out in this programme.
Working with others involved in the same area of work in other parts of the world isboth encouraging and an opportunity to learn from others’ experiences. In addition, thelarge number and the variety of those participating in the programme offered possibilitiesfor small-scale collaboration among groups that would otherwise have had difﬁculty inidentifying partners among professional groups, e.g. organizations of patients and theirrelatives. Such collaborative ventures proved to be very valuable in reducing the risk ofburn-out and in making the participating sites feel that they belong to a group with similarideals and goals.
Eighth , in addition to using modern technology and to linking sites electronically via
a website, the WPA has also invested in organizing face-to-face encounters between par-ticipants in the programme. Heads of sites that had already completed work served asconsultants for new sites. They were invited to report on their experiences at scientiﬁcmeetings and at annual meetings of participating sites. Newsletters and annual reports wereused to record and publicize the work done and to give recognition to the achievementsof the participants. Exhibits were developed for scientiﬁc meetings where the progress ofprogrammes could be displayed.
Ninth , a programme has to have tools to help newcomers to the programme and to facilitate
the decision of those who might be hesitant to participate. Among the materials producedto help local Action groups in their work are:
rA volume giving guidelines and a detailed description of the different stages that shouldbe followed and milestones that should be met (this volume can be downloaded fromthe website of the programme www.openthedoors.com);
rA description of the work done in different sites of the programme (published yearlyand incorporated into the book by Sartorius and Schulze [2]);
rA bibliography of articles and books dealing with stigma, focusing on work over thepast two decades (available from the Chairperson of the WPA Section dealing withStigma and Mental Illness, Prof. Heather Stuart, e-mail: heather.stuart@queensu.ca;
5
5Also published as [5] and [6].

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46 THE WPA GLOBAL PROGRAMME AGAINST STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA
rA list of papers produced by the programme sites;
rA volume summarizing knowledge about schizophrenia and indicating issues that
are of particular importance in preventing or diminishing stigmatization (seewww.openthedoors.com);
rAn inventory of posters, videos and other materials used in different countries (see[2]);
rA manual for programme implementation (available from www.openthedoors.com);
rStandard curricula and syllabi for courses on how to start a programme (available fromProf. Heather Stuart – see above).
Tenth, the evaluation of a programme against stigma has to be done (i) in relation to
improvements in target areas identiﬁed by people with schizophrenia and their families,and (ii) by measuring changes of behaviour and of situations rather than stop at measuringchanges in attitudes or the amount of knowledge that have been the usual areas of programmeevaluation in most projects to date.
Finally, the most important statement that can be made on the grounds of experience
gained from this ten-year effort is that a successful programme against stigmatization andits consequences can be launched in any country – small or large, rich or poor, industrializedor developing – and that the success of this work is richly rewarding for all those involvedbecause it gives them the certainty that they have done something that must be done in acivic society. To people who suffer from mental illness and to those who care for them thereduction of stigma and of its consequences gives a new lease on life and hope for a betterfuture.
At present, work against stigma in the various centres involved in the WPA programme is
monitored by the WPA Section on Stigma and Mental Disorders (Chairperson: Prof. HeatherStuart – e-mail: heather.stuart@queensu.ca). Regular courses (e.g. during congresses of theAssociation of European Psychiatrists and of the World Psychiatric Association) are held tofacilitate the initiation of programmes in various countries. The WPA Programme againstStigma because of Schizophrenia is the largest anti-stigma programme concerning mentalor other diseases ever undertaken. Its success is the result of selﬂess involvement of manypeople whose main reward has been the programme’s success and the awareness that theyhave made a signiﬁcant contribution to the ﬁght against stigma which was and remains themain obstacle to mental health programmes and to a better quality of life of people withschizophrenia.
References
1. Sartorius, N. (2000) Breaking the vicious cycle. Mental Health and Learning Disabilities Care
4(3), 80–82.
2. Sartorius, N. and Schulze, H. (2005) Reducing the Stigma of Mental Illness. A Report from
a Global Programme of the World Psychiatric Association . Cambridge: Cambridge University
Press. The website of the programme www.openthedoors.com contains a large set of materialsproduced by the programme.
3. Asociaci´ on Mundial de Psiquiatria, Juan J. L´ opez-Ibor, Olga Cuenca (2000) La Esquizofrenia Abre
Las Puertas. Programa de la Asociaci ´on Mundial de Psiquiatria para combatir el estigma y la
discriminacion debidos a la esquizofrenia. Volume II ,Q u ´e es y como se trata la esquizofrenia.

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REFERENCES 47
4. Sartorius, N. and Helmchen, H. (1981) Aims and implementation of multicentre studies. Modern
Problems of Pharmacopsychiatry ,16, 1–8. Basel, Munich, Paris, New York: Karger.
5. Pickenhagen, A. and Sartorius, N. (2002) Annotated Bibliography of Selected Publications and
Other Materials Related to Stigma and Discrimination because of Mental Illness and InterventionProgrammes Fighting It . World Psychiatric Association Global Programme to Reduce the Stigma
and Discrimination because of Schizophrenia.
6. Aichberger, M. and Sartorius, N. (2006) Annotated Bibliography of Selected Publications and
Other Materials Related to Stigma and Discrimination. An Update for the Years 2002 to 2006 .
WPA Global Programme to Reduce Stigma and Discrimination because of Schizophrenia.

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4‘Fighting stigma and
discrimination because ofschizophrenia – Open theDoors’: a collaborative reviewof the experience from theGerman project centres
A.E. Baumann, W. Gaebel et al.
Department of Psychiatry and Psychotherapy, Heinrich-Heine-University, D ¨usseldorf
40629, Germany
Introduction
Stigma associated with mental illness and psychiatric treatment, and the discrimination to-
wards people with mental illnesses that frequently results from this, are the main obstaclespreventing early and successful treatment. To reduce such stigma and discrimination towardsmentally ill people and especially those with schizophrenia, the World Psychiatric Associa-tion’s (WPA) anti stigma programme ‘Open the Doors’ [1] is currently being implementedin more than 20 countries. Since August 1999, the programme has been undertaken in sevenproject centres in Germany. Public information programmes and educative measures aimedat selected target groups are intended to improve the public’s knowledge regarding symp-tomatology, causes and treatment options for schizophrenia. Improved knowledge shouldin turn reduce prejudice and negative perceptions and facilitate the social reintegration ofthose suffering from mental illness.
Education, protest and contact are the key elements of anti stigma strategies recommended
by the WPA and various research groups [2, 3]. These anti stigma strategies include improv-ing psychiatric care and psycho-education of patients and families, involving patients andfamily members in all anti stigma activities, including anti stigma education in the trainingof health care providers, initiating educational activities in the general public and speciﬁctarget groups, and promoting social and legal action to reduce discrimination. In the fol-lowing report, we describe how these strategies are employed in the German project centresparticipating in the WPA programme. We also describe the ﬁndings from the evaluation ofselected interventions.
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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50 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
Kiel
Itzehoe
Hamburg (Irre Menschlich e.V.)
Leipzig (Irrsinnig Menschlich e.V.)
Düsseldorf
Munich (ASAM)
Munich (BASTA)
Figure 4.1 Open the Doors in Germany: project centres and associated initiatives
Open the Doors programme in Germany
In autumn 2000, the following seven German project centres joined to become the Open
the Doors Society: Hamburg, Kiel, Itzehoe, Leipzig, D¨ usseldorf and Munich (two cen-
tres) ( Figure 4.1 ). Each of the German project groups operates independently, assessing
needs in a particular community and appropriate responses. Each centre has developed
its own interventions; joint activities are coordinated from the D¨ usseldorf centre. Centres
in D¨usseldorf and Munich (Ludwig-Maximilians University [LMU]) are evaluating their
measures within the framework of the German Research Network on Schizophrenia.
The interventions in D¨ usseldorf and Munich (LMU) target both the general public and
speciﬁc groups having close contact with persons with schizophrenia. Such interventions
are art exhibitions, ﬁlm and theatre evenings as well as advanced training with staff in
psychiatric hospitals. The second Munich project group – the Bavarian Anti-stigma Action
(BASTA), located at the Technical University – is an action group of psychiatric patients,
their relatives and psychiatric professionals who have combined to tackle discrimination
toward people with mental illness in society. Various projects provide the public and speciﬁc
target groups with information about mental illnesses, e.g. in workshops with the police
faculty from the Bavarian training college for civil servants. Using the Australian Stigma
Alarm Network (SANE) as a role model, this action group also initiated the Internet-based
SANE, which facilitates reporting of discrimination against those with mental illness in
advertisements or press reports. To tackle stigma and discrimination in rural areas, activities
in Itzehoe and Kiel focus on establishing a network of individuals with mental illness and
their relatives, professionals and decision makers within the political arena and society in
general. The project groups in Hamburg and Leipzig provide information based on focus
issues in schools. The school projects promote direct contact between young people and
persons with mental illness during project days or weeks in which schoolchildren are ﬁrst
sensitized to the issue.
Open the Doors D ¨usseldorf
Anja Esther Baumann, Harald Z ¨aske and Wolfgang Gaebel
The interventions at the D¨ usseldorf and Munich (LMU) centres are being carried out as
part of a research project of the nationwide German Research Network on Schizophrenia

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OPEN THE DOORS D ¨USSELDORF 51
(GRNS), funded by the German Ministry of Education and Research (Grant No. 01 GI
9932). The GRNS is one of 17 ‘Competence Networks in Medicine’ to bring together theleading research institutions and qualiﬁed routine care facilities [4]. With D¨ usseldorf as
the Head Ofﬁce, the network comprises several multi-centre treatment studies, biologicaland genetic research projects and general topics such as health care economy and training.High priority is given to public education [5]. Therefore, there is, besides an awareness-raising programme, a programme on the ‘Reduction of stigma and discrimination becauseof schizophrenia – Open the Doors’, which is evaluated within the framework of the GRNS.Including the general public relation activities of the GRNS Head Ofﬁce, about 200 pressreports have been released since the network was set up, and network members have beeninvolved in nearly 40 radio transmissions and television broadcasts.
Surveys in the public and in patients
The centre in D¨ usseldorf conducted pre- and post-interventional surveys of knowledge and
attitudes in D¨ usseldorf, Munich, Cologne, Bonn, Berlin and Essen [6]. Following the pre-
test survey, the centres in D¨ usseldorf and Munich (LMU) conducted a variety of multi-level
anti stigma interventions. More than 80% of those sampled stated that more positive mediareports, more occasions for personal contact with mentally ill people and more publicinformation about mental illnesses would be useful possibilities to improve the publicacceptance of mentally ill patients. Eighty percent of those surveyed thought that patientssuffering from schizophrenia suffer from a ‘split personality’. Another survey was conductedwith inpatients at the Department of Psychiatry and Psychotherapy. The patients reportedthat most of the discriminating situations they faced were in the workplace. Colleagues andemployers were rated as supportive, but this group is also rated as the highest discriminationsource.
Interventions in the general public, with journalists and at schools
Many interventions have been undertaken and evaluated in the target groups ‘generalpublic’, ‘schoolchildren’ and ‘journalists’, e.g. the exhibitions ‘Psyche and Art’ and ‘Exneuron’, readings with young patients and actors Wenn die Seele ¨uberl ¨auft(When the mind
overﬂows), ﬁlm evening Das wei ße Rauschen (The White Noise), panel discussion; theatre
event 4.48 Psychose (4.48 Psychosis), beneﬁt concert ‘Katja Riemann: Favorites’, popular
scientiﬁc lectures, open days in the psychiatric hospital in D¨ usseldorf, educational lec-
tures and seminars at secondary schools and institutes for adult education, workshops withjournalists and continuous press and media work.
Publications
The project team in D¨ usseldorf produced numerous publications on the research results
and evaluation of the anti stigma activities in national and international journals. The grouporganized various symposia and panel discussions and reported about the progress of theOpen the Doors programme in Germany in presentations and scientiﬁc posters as well asinformation booths at national and international congresses.
As members of the WPA Training Manual Task Force, the head and the programme
coordinator of the team in D¨ usseldorf contributed to the development of the ‘Training

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52 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
Manual’ [7], a handbook which gives practical information on the planning, conduction
and evaluation of anti stigma programmes and target-group interventions.
A textbook, Stigma – Discrimination – Coping Dealing with Social Exclusion of Persons
with Mental Illness , by Professors Gaebel, M¨ oller and R¨ ossler has been published (in
German) [8]. It contains reports about the varied experiences of individuals suffering frommental illness and their relatives, multi-disciplinary scientiﬁc reﬂections on causes forstigma and discrimination, as well as strategies and programmes regarding how to overcomethem.
Anti Stigma Prize
At one of the country-wide journalist workshops in D¨ usseldorf (June 2003), the society
‘Open the doors’ awarded for the ﬁrst time the ‘Anti stigma Prize’, which will be awardedevery year to a person or institution for special engagement with stigma. Since 2004 the prize(€6000) has been awarded jointly with the German Society for Psychiatry, Psychotherapy
and Nervous Diseases (DGPPN) and Sanoﬁ-Aventis.
International collaborations
The head and the programme coordinator in D¨ usseldorf are members of the WPA Section on
Stigma and Mental Health. They represent the German anti stigma activities in the Section.
The results of the above-mentioned public opinion survey in six large cities in Germany
[6] carried out by the D¨ usseldorf research group showed that less than 10% of the 7246
interviewees admitted being afraid of talking to someone with schizophrenia, while al-most 16% said they would feel disturbed working alongside someone with schizophrenia.One third indicated concern if a group of 6–8 people suffering from schizophrenia movedinto their neighbourhood, more than 40% would be opposed to sharing a room with aperson with schizophrenia, e.g. in a hospital, and over 70% would not marry someonewith schizophrenia. These results concerning social distance are similar to those of a studycarried out by the Canadian research group which also conducted a public survey in theframework of the ‘Open the doors’ programme [9]. Both studies show that the extent ofsocial distance increases with increasing intimacy of the relationship. That means the closerand more private the imagined situation is, the more rejection of people with schizophreniais to be expected. An extensive comparison of the two studies can be found in [10]. Thepublic opinion survey in Germany also showed that the amount of social distance is depen-dent on contact with people affected with mental illness. People who know someone withschizophrenia or are themselves affected, have lower social distance than people who haveno such contact or are not affected themselves. The extent of social distance is likewise de-pendent on knowledge. People knowing less about the behaviour and symptoms associatedwith schizophrenia as well as the treatment options for schizophrenia have greater socialdistance.
A further international cooperation took place in the framework of a joint research project
with a research team in N¨ urnberg, Germany, and the Macedonian Anti stigma Association
in Skopje, (former Yugoslav Republic of) Macedonia. The team in Macedonia conductedan attitude survey among the Macedonian public with the same questionnaire which hasbeen used to assess public attitudes in Germany. The results of the surveys have beencompared [11], especially as regards potential coherences of attitudes and differences in thehealth care systems in the two countries. Based on the survey results, intervention strategies

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OPEN THE DOORS D ¨USSELDORF 53
for the anti stigma work in Macedonia will be developed in close cooperation of both
research teams. A further cooperation is in planning: a comparative study about attitudesof psychiatric professionals towards mentally ill patients in Macedonia and Germany. InOctober 2006, on the occasion of the III International Stigma Conference in Istanbul,Turkey, the Macedonian team became a member of the WPA Section on Stigma and MentalHealth.
Anti-stigma training modules
On the basis of the gained experiences and data from evaluation of the conducted in-terventions, the development, production, evaluation and implementation of educationalmodules is the next step in the ﬁght against stigma and discrimination in the project centrein D¨usseldorf. So called ‘Anti-stigma modules’ will be produced, tested and implemented in
the framework of the anti stigma project of the GRNS. The ‘anti-stigma modules’ includetwo parts comprising (a) methodological information about the conduction and evalua-tion of anti-stigma interventions with a target group and (b) information (e.g. ‘Causes ofschizophrenia’, ‘Treatment of schizophrenia’) produced for the special needs of a targetgroup. The ‘anti-stigma modules’ will enable interested persons and institutions to au-tonomously conduct anti-stigma interventions in a speciﬁed target group (for example,journalists, hospital ward staff) and furthermore will be integrated in education schedules.Implementation and evaluation will be conducted in cooperation with centres of the Openthe Doors society. Focus interviews and patient surveys have shown that a substantial pro-portion of psychiatric patients feels discriminated against by health care staff. It is knownthat even mental health professionals tend to hold stereotyped images about mental illnessand mentally ill persons. Modules for anti-stigma training with mental health professionalshave not yet been developed and are therefore in the focus of the future work of the centrein D¨usseldorf.
Competence Centre for Destigmatization of People with Schizophrenia
For long-term maintenance of these modules, a Competence Centre for the Destigmatization
of People with Schizophrenia (CCDPS) will be established under the umbrella of the GRNSin D¨usseldorf, providing for a fee services such as advice in implementation and evaluation
of the modules, ‘Train the trainers’ seminars, evaluation services and continued updatingand further development of the modules.
Post-initiative survey
In summer 2004, the project group in D¨ usseldorf conducted the post-initiative survey in
the general public with almost 4700 interviewees (the same sample as in 2001). Firstresults show positive effects of the anti-stigma work in Germany over recent years. Theresearchers found an increase of knowledge about causes, symptoms and treatment optionsfor schizophrenia and a decrease of social distance towards individuals with schizophrenia.Social distance decreased signiﬁcantly in those interviewees who knew at least one of theanti stigma initiatives, Open the Doors, ASAM (Anti-stigma Action Munich) or BASTA[12, 13].

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54 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
Involvement in further national and regional anti stigma programmes
The project group in D¨ usseldorf has been invited to conceptualize the action plan and is
actively involved in the ‘Alliance for Mental Health’ (Aktionsb¨ undnis Seelische Gesund-
heit), which has been initiated by Open the Doors and the DGPPN, assisted by the FederalHealth Ministry under the auspices of the Federal Health Minister.
The group is also signiﬁcantly involved in the planning, conduction and evaluation of a
regional campaign to raise the awareness of depressive disorders in the public, the D¨ usseldorf
Alliance against Depression, which was initiated by the regional Medical Association inApril 2005.
ASAM – Anti stigma Action Munich: Activities and experience
Petra Ursula Decker and Hans-J ¨urgen M ¨oller
Improving public attitudes
Stigma attached to schizophrenia creates a vicious cycle of alienation and discrimination for
those who suffer from it and often for their families. Stigma can become the main cause ofsocial isolation, inability to ﬁnd work, alcohol or drug abuse, homelessness, and excessiveinstitutionalization, all of which decrease the chance of recovery. To counteract stigma andprevent discrimination the WPA programme aims to increase the awareness and knowledgeof the nature of schizophrenia and treatment options and to improve public attitudes tothose who have or have had schizophrenia and their families, as well as to generate actionto prevent or eliminate discrimination and prejudice. Therefore from the beginning of theanti stigma programme the LMU group ‘Anti-Stigma-Action Munich (ASAM)’ organizedevents for the general public such as monthly lectures and readings with well-known au-thors, art exhibitions, cinema shows that include panel discussions, and poster actions suchas ‘Artists against Stigma’. At many of these activities surveys were conducted, measuringthe knowledge and attitudes of the relevant target groups such as the public, patients, andpsychology and medical students. For this work ASAM received the ‘Lilly SchizophreniaAwards 2002 – Innovative concepts for new perspectives’. Furthermore, training for hospi-tal staff will be implemented to reduce stigma and discrimination because of schizophre-nia. In the following section the problems and success of some of these activities willbe discussed.
Public relations in psychiatry demand a qualiﬁed contact with the media. A good personal
contact between psychiatry and media is important, as journalists are mediators for thepublic. Well-prepared press portfolios for the media are an absolute must. ASAM startedwith press conferences in April 2001 and April 2002 and created media workshops in March2003 and November 2004. Readers from both sides – the media and psychiatry – discussedparticular topics and problems, e.g. negative headlines and reports in the news concerningthe mentally ill, their negative portrayal in movies or misunderstandings between the writeror interviewer and the interviewee in printed articles. The main topic for 2004 was the article‘Life with the delusion’, a sensitive portrayal of a women who suffers from schizophrenia,in the German magazine Stern No. 42, 7 October 2004. The author and the subject attended
the workshop and discussed the article with the journalists.
Important for the media is to have an opportunity to talk to the mentally ill, their relatives
and the professionals together, but also to respect the person and their privacy. Moreover,diverse positions increase the authenticity to the public. A life story heard from a mentally ill

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ASAM – ANTI STIGMA ACTION MUNICH: ACTIVITIES AND EXPERIENCE 55
person affects people more than hearing statements about their medical reports. Afterwards
people feel more empathetic and their sympathy for the mentally ill increased, as wasmeasured with questionnaires at the cinema shows in Munich.
In August 2002, 2003 and 2004 ASAM and BASTA participated at the Munich In-
ternational Film Festival. With the topic ‘Psychiatry in movies’ several ﬁlms such as A
Beautiful Mind ,I Never Promised You a Rose Garden ,Open Your Eyes andElling , were
shown and discussed with the audience afterwards. All ﬁlms were evaluated with pre-postquestionnaires.
As one important aspect in anti-stigma work is to ameliorate knowledge about schizophre-
nia, in April 2001 four brochures were created and designed concerning the illness ofschizophrenia, the therapy methods of schizophrenia, the causes of schizophrenia and thestigmatization of schizophrenia. Ten thousand copies of each brochure were produced in2004 and circulated to the public, health institutions and doctors and psychologists through-out Germany.
Since the project started, ASAM has been able to inform the public about stigma and
discrimination because of schizophrenia in the daily national press, regional press andtabloids. Furthermore, face-to-face interviews and special articles were given to the regionalpress and medical journals.
A unique activity was the poster session ‘Artists against Stigma’ in 2003: 80 artists from
literature, movies, theatre and arts, such as the Nobel prize winner for literature G¨ unter
Grass, supported this project.
In February 2002 ASAM created a web site to reach more people for ﬁghting
against stigma and discrimination because of schizophrenia: http://psywifo.klinikum.uni-muenchen.de/open. Since then, 82,156 people have visited the homepage. Mean dailynumber of visits has been 245.58 with a maximum of 500 people per day and an increasingrate. At the homepage we mentioned links to other important institutions. The homepage,the poster, the press portfolios and the folders have the same design in order to reach a highrecall value in the population.
Not just mentally ill people are stigmatized but also psychiatry as an institution is stig-
matized. Nearly 50 per cent of the German population associate psychiatry with paddedcells. This stereotype is hard to break. Therefore the clinic offers ‘open days’, workshopsand guided tours in the clinic for the public, the police and pupils as well as face-to-facediscussions with patients, psychologists and psychiatrists.
Survey results
Anti-stigma surveys, as mentioned before, were performed with self-assessment question-naires for the public, for medical and psychological students and for patients. Some detailsfrom the Munich surveys: 85.2% of the Munich public ( n=1278) demanded more face-
to-face meetings with the mentally ill, such as art exhibitions or theatre events; so did thepsychological (58.7%) and medical (53.3%) students of the Ludwig-Maximilians Univer-sity Munich. Of the Munich public ( n=1092) 77.3% considered face-to-face contact with
the mentally ill during open-day activities as important or very important. Of the Munichpatients ( n=37) with schizophrenic disorders (ICD 10) from the BKH Haar in 2001,
83.8% required more positive portrayals and reports in the media: 88.2% from the publicof Munich ( n=1092) wished the same. Of the psychological students 79.4% and of the
medical students 79% had similar requirements. The patients were asked: from which ofthe following groups did they feel discriminated against or supported. Mostly they were

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56 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
stigmatized in the workplace (40.5%), followed by in their families (40.5%), by doctors or
therapists (29.7%), by the police (24.3%) and by their friends (18.9%). At the same timethey found support from doctors or therapists (54%), their friends (51.4%) and their families(51.4%), followed by the police (45.9%) and their colleagues or boss (37.8%). Of interestwas also the result of the medical students among whom 42.9% felt afraid by just havinga conversation with mentally ill patients, even after they have had their psychiatric course.More education and studies are necessary in this respect.
BASTA – The alliance for mentally ill people
Kerstin Wundsam, Romain Beitinger and Werner Kissling
BASTA is an organization consisting of consumers, caregivers, psychiatric professionals,and other interested persons (e.g. journalists, teachers and students) with its main ofﬁcelocated in Munich and project centres throughout southern Germany. Since the year 2001,approximately 25–35 members have been developing various project groups with specialanti-stigma activities. Within these interventions, BASTA aims to counteract stereotypesabout mental illnesses (mainly schizophrenia), diminish established prejudices towardsinﬂicted people and generally work for a greater interest in and better knowledge aboutpsychiatric and mental health topics. To meet these goals, BASTA informs the generalpublic and specially chosen target groups (e.g. students and police ofﬁcers) about symp-toms and treatment opportunities for mental illnesses, about stigma and its consequences.In addition, the demystiﬁcation of the psychiatric profession, psychiatric treatment and as-sociated institutions are further areas of interest. In order to improve compassion for andunderstanding of a particular group of people, we know from previous research [2, 14, 15,16] that personal contact is extremely important and can positively inﬂuence attitudes, prej-udices and future behaviour. Therefore, the core of all BASTA projects is to offer facilitiesfor more communication and contact between the respective target group and people livingwith mental illness, care givers and/or psychiatric professionals. To estimate the efﬁcacy ofthese anti-stigma interventions and to identify possible misleading or harmful effects, themain projects were evaluated via surveys.
The anti-stigma project for students
To offer a school project that meets the needs of teachers while simultaneously ‘playfully’informing the students about mental illnesses and raise their interest, BASTA developed the‘Learning Kit: Mentally ill people’, consisting of four units. The ﬁrst three units familiarizethe students with the topic ‘mentally ill people’ and ‘stereotypes and prejudices towardspsychiatric diseases”. The materials of this Learning Kit can be easily modiﬁed, dependingon the age of the students and varying levels of proﬁciency – and can be easily integratedinto the normal curriculum of the class. Meeting a ‘real patient’ together with a psychiatricprofessional in unit 4 represents the core of the Learning Kit. The team visits the class fora minimum of 90 minutes. The students are encouraged to ask questions or speak openlyabout any topic of interest to them in regard to psychiatric conditions, personal experienceswithin the family of the consumer of mental health services as well as prejudices anddiscriminating behaviour due to mental illness. We found that the interventional programmesigniﬁcantly increased the students’ knowledge about schizophrenia and improved ‘negativestereotypes’ and their ‘social distance’, i.e. the students readiness to enter into different types

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BASTA – THE ALLIANCE FOR MENTALLY ILL PEOPLE 57
of social relationships with someone who has had schizophrenia. All participating students
and teachers enthusiastically accepted the project.
An awareness training programme for police ofﬁcers
Police ofﬁcers frequently become involved with acutely mentally ill people and often feelneither sufﬁciently prepared nor supported. Little knowledge regarding psychiatric diseases,like schizophrenia, and the anticipation of increased violence and threat posed by psychiatricpatients can end up in ‘tense’ and difﬁcult situations. The contact between ofﬁcers andpatients with schizophrenia is commonly associated with conﬂict situations, e.g. whenpatients require clinical admission because of ‘danger to self or others’. These interactionsare often sources of stigmatization and discriminating behaviour.
The training programme was planned and realized by BASTA in cooperation with psy-
chiatric patients, care givers, psychiatric professionals and sociology teachers at a policeacademy near Munich, Germany. Police ofﬁcers participate in a one-day seminar, whichconsists of three teaching units and lasts 4.5 hours in total. The core of the seminar is the per-sonal contact between ofﬁcers and people who have experienced mental illnesses, and aimsfor better understanding and knowledge as well as improved compassion and empathy withpsychiatric patients and their families. Approximately 200 police ofﬁcers were enrolled intoan evaluation during the pilot project. We found that the need for special training of policeofﬁcers regarding psychiatric patients and their problems was generally acknowledged. Theproject was enthusiastically welcomed by the ofﬁcers and teachers at the police academy.Participants embraced the seminar presented and rated it highly. The personal conversationswith people who had previously experienced mental illness offered the police ofﬁcers anopportunity for interesting discussions and new information to integrate in their everydayprofessional life. Ofﬁcers emphasized that most of them had never had contact with ‘healthypatients’ before. This personal contact seems to be very important and positively inﬂuencesthe empathy and understanding of police ofﬁcers with the mentally ill and their families.
Anti-stigma projects for the general public
Readings (including poetry), theatre performances, lectures, diverse arts exhibitions andfurther screening of movies (e.g. Elling ,Iris,The White Noise ,A Beautiful Mind andOpen
Your Eyes ) were conducted. To examine the impact of these ﬁlms, BASTA surveyed the
audiences’ ( n=311) beliefs and social distance before and after three ﬁlms. A Beautiful
Mind andOpen Your Eyes had no negative inﬂuences, but did not improve the audiences’
attitudes or social distance. On the other hand, The White Noise did increase social distance
and seemed to be, all in all inappropriate for anti-stigma projects. These ﬁndings conﬁrmthe results of Baumann et al. [17].
Working with the media
Regional and national newspapers and magazines printed many articles and interviews with
anti-stigma messages, and documentaries have appeared on radio stations in Munich. Work-ing closely with the media and supporting journalists, as well as the care for a positive andbenevolent cooperation with representatives of the media, are very important componentswithin the anti-stigma campaigns. Furthermore, projects with the media also empowerconsumers and caregivers involved by acknowledging their expert role.

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58 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
Fighting against acute stigmatization
In order to protest against discrimination within advertisements, TV series, movies and
press reports, BASTA has founded ‘SANE’, a web-based ‘ Stigma- Alarm NEtwork’. The
idea for ‘stigma-busting’ networks was originally realized in the USA (NAMI) and Australia(SANE) and both have had an impressive number of successes since their establishment. Atthe German SANE, those interested can participate in the network at no cost and enrol simplyby registering personal e-mail addresses at the BASTA website (www.openthedoors.de).Via Internet-based communication, the members can inform BASTA of discriminatingcases and vice versa, get information in the case of an ofﬁcial action of BASTA to stopstigmatization or discrimination (including contact information of the originator). Every-one can voluntarily participate in these protest actions (through personal letters, e-mails,telephone calls, etc.) and follow the ongoing progress in the category ‘SANE’ at the BASTAhomepage.
A change of views about mentally ill persons among those who stigmatize can be brought
about and discrimination in many cases can be stopped. The power of SANE is of coursedependent on its members and their activities in a stigma-case. At the moment there are 700SANE members registered and enrolment is steadily increasing (following various publicrelation actions). One future plan is the establishment of SANE Europe, with differentcountries participating in the network for strong and powerful actions throughout Europe.Financial sponsors and a well-planned language network would be necessary to mount suchan ambitious project.
General services and support
BASTA provides support for referenced papers, as well as diploma or doctoral theses foruniversity students who wish to collaborate on and deal with anti-stigma issues. Addition-ally, BASTA releases monthly newsletters (free of charge), where members get informationregarding different activities, event notes and general news. Registration is quick and simpleat the website www.openthedoors.de.
Changing people’s views – Building bridges: For more
normality in dealing with mental health problemsIrrsinnig Menschlich e.V. Leipzig
Manuela Richter-Werling and Matthias Angermeyer
Irrsinnig Menschlich e.V . (www.irrsinnig-menschlich.de) is the ﬁrst German association
committed to Public Relations in Psychiatry. The aim of Irrsinnig Menschlich e.V ., whichwas founded in 2000, is to promote dealing with mental disorders in an open and enlightenedway. That is why the association considers itself as a contact pool for all people who want tolearn more about mental health, mental disorders and available treatment. One of the mostimportant intentions of Irrsinnig Menschlich e.V . is to promote personal contact with personswith mental health problems, to make the seemingly incomprehensible understandable, toreduce prejudices and fears and to promote integration. The association takes advantageof the many different points of views of its members: patients, relatives of persons withmental disorders and professional helpers, journalists, politicians, artists and committed

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CHANGING PEOPLE’S VIEWS – BUILDING BRIDGES 59
citizens; they all work together for the common cause with their individual experiences and
resources.
First and foremost, however, the work of Irrsinnig Menschlich e.V . beneﬁts from the
activity of those who are affected by stigmatization: people with mental disorders andtheir relatives. Their motivation to ﬁght against stigma and discrimination is very strong.Breaking the spiral of discrimination based on stigma can only be successful by joint effortsof patients, relatives, professionals and the public. That is why Irrsinnig Menschlich e.V .considers itself as an association that ‘builds bridges’ between psychiatry and the public. Theprojects of the association are based on results of up-to-date stigma research. In particularpersonal encounter with people with mental disorders results in a reduction of stereotypes,fears and distance. The goals of Irrsinnig Menschlich e.V . are:
rTo facilitate encounters with people with mental disorders.
rTo promote the sharing of experiences of those affected, relatives of people with mentaldisorders and the public.
rTo consider itself as the contact pool for the media and to contribute to setting theagenda.
rTo cooperate with international initiatives which are engaged in promoting tolerancefor and understanding of people with mental disorders.
The following components have been developed to accomplish these ambitious goals.
The school project ‘Crazy? So What!’
According to the WHO European Ministerial Conference on Mental Health held in Helsinki
in 2005, prevention and promotion are of the greatest importance when it comes to the mentalhealth of children and adolescents. The school project ‘Crazy? So What!’ – developed, testedand positively evaluated by Irrsinnig Menschlich – aims in this direction. Since 2001, morethan 2500 students from all over Germany have participated in the school project.
The uniqueness of ‘Crazy? So What!’ is manifested in the combination of prevention
and de-stigmatization – in this way Irrsinnig Menschlich has created a new ﬁeld of healtheducation. The project, which is designed for students starting at year 9 raises awarenessabout good mental health and contributes to prevention and promotes openness, under-standing and tolerance in interpersonal relationships. At the same time it encourages peoplewho have experienced mental health problems to participate in society with more self-conﬁdence. The core aspect of the school project is the direct contact between students andpeople with a mental disorder. The project takes place for one day or longer in school andis conducted by a moderator and a person who has experienced a mental disorder. Becauseof the growing national interest in the project which has been expressed by students andteachers, the association has ﬁled a grant application to the Aktion Mensch in 2005 for thenationwide implementation of ‘Crazy? So What!’ The aim is to establish regional groups inall 16 federal states to offer and conduct the project independently at schools in their regionand in the future also train and instruct new regional groups. At the same time a networkis being established to secure the school project in the long term. Among the partners arethe Ministries of Culture and Ministries of Health of each federal state, people affected

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60 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
and relatives’ associations, the central associations of social welfare, the institutes for the
further education of teachers in each federal state and the local education authorities.
Organizations from Slovakia and the Czech Republic are planning to adopt the school
project in their countries and are undertaking special courses to be trained in the implemen-tation of the project. The association has been successful in collecting promotional fundsfrom the European Union for the implementation of the project in these two countries.
MUT 2005 (Courage 2005) – prize for political action for the beneﬁt
of people with mental disorders
Society is paying a high price for mental disorders, in the form of both human suffering and
economic costs. Realizing that the maintenance and promotion of mental health is in theend a political task, is only slowly becoming accepted. To accelerate this process, IrrsinnigMenschlich has been awarding the MUT Prize since 2003. The immense interest in the prizeindicates that the association actually motivates politicians to become more committed topeople with mental health problems. At the same time it shows that mental health andmental illness are topics of major interest to the public.
Irrsinnig Menschlich e.V . wants to:
racknowledge the courageous commitment of politicians to the disadvantaged group
of people with mental disorders;
rpromote the establishment of a network made up of politicians, prominent advocates,the media, institutions and organizations;
rcall upon politicians to act in favour of a lasting improvement of the situation of peoplewho have experienced and are experiencing mental health problems;
rencourage the public, the media and politicians to pass on information about mentaldisorders and to reduce prejudices against people with mental disorders;
raccomplish that maintaining and promoting mental health as well as preventing mentaldisorders become a part of the social agenda.
Irrsinnig Menschlich decided to name the prize ‘MUT’ (courage) because being active on
behalf of people with mental disorders cannot be taken for granted. In times of cuts in thesocial sector and the reorganization of social security systems politicians can and must setan example!
Against the images in our heads – media work for people with
mental health problems
The mass media have the strongest impact on people’s attitudes and opinions. The media
constitute an indispensable partner when it comes to reducing the stigmatization of anddiscrimination against people with mental disorders. However, media reports can only beaccurate when journalists receive accurate information. That is why Irrsinnig Menschlichencourages people with mental disorders to do public relations on their own behalf andsupports journalists and also initiates media projects. These include the establishment of

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A ‘TRIALOGIC’ CAMPAIGN IN HAMBURG 61
the ﬁrst international media workshop for people with schizophrenia in Michalovce, a
joint project of the Slovakian anti-stigma initiative ODOS and Irrsinnig Menschlich e.V .In cooperation with German public service broadcasting, Irrsinnig Menschlich e.V . hasinitiated theme nights on mental health problems. At the moment the association is workingon a cinema ad about mental disorders in co-operation with the MDR (broadcasting stationin central Germany).
Future prospects
Initiatives like Irrsinnig Menschlich e.V ., which are committed to maintaining and promotingmental health and to preventing mental disorders, are experiencing a growing interest fromthe public. In the future their role will be increasingly that of mediator between politicians,people affected and their relatives, the care system and the public. This has been emphasizedby the WHO European Ministerial Conference on Mental Health held in Helsinki in January2005. The association Irrsinnig Menschlich is prepared to face this challenge. However, inorder to do so, a ﬁnancial basic coverage with public funds is necessary to secure the workof the association.
Psychiatry goes to school-Special open days for schoolchildren
and student s – a ‘trialogic’ campaign in Hamburg
Thomas Bock and Dieter Naber
‘Irre menschlich Hamburg’ (madly human) has been in existence for many years; it emerged
from a Psychosis Seminar in Hamburg, independently from ‘Open the Doors’ and has atripartite organization consisting of persons who had experienced psychosis, relatives andprofessional experts [18]. First, they try to reduce all mutual prejudices and then join forcesto meet the prejudices held by the public. Their motto is to endeavour to set an examplefor the more than 100 psychosis seminars in German speaking countries, to summon upcourage and conﬁdence to come into the open and exercise inﬂuence on the public opinion– it is an anti stigma campaign from below. With this triad concept, this organization aimsalso at trying to achieve cooperation with other programmes such as ‘Open the Doors’.
Tasks of Irre menschlich Hamburg
rProviding ‘ﬁrst-hand information’ to journalists (participation in major talk shows,short reports on national TV , special radio spots, journal articles);
rInformation at schools (a total of 120 projects for all grades, integrated into the lessons),PR work at universities, further training for teachers, mentors etc. with the focus on‘mental illness as a teaching subject’ and ‘mental illness in schoolchildren’;
rInformation projects in companies (e.g. regular presentations at police academies);
rSupport of theatre and movie projects and operation of its own website(www.irremenschlich.de);
rOrganization of special open days for schoolchildren: ‘Psychiatrie macht Schule’(Psychiatry goes to school);

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62 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
rResearch activities (e.g. an award-winning paper on the ‘The image of mentally ill
persons in the children’s and adolescents’ literature of the German language’).
Principles
Trialogue : Psychiatry has not been innocent with respect to stigmatization, historically or
in the present day. Therefore, psychiatrists have to assume responsibility in the processof exercising positive inﬂuence not only on public awareness of psychiatry but also withrespect to the public image of mentally ill persons. They can only be credible in cooperationwith these persons and their relatives.
Encounter: Direct contacts with mentally ill persons are the only convincing encounters.
Therefore, information projects in schools and in companies include direct contacts.
Rehabilitation and prevention: Meeting persons who have experienced psychosis helps
to reduce fears, acts against prejudices and contributes to an attitude that does not leaveunchallenged certain cultural and media-shaped norms. Thus, anti stigma activities reducenot only fear but also pressure. Tolerance of others leads to greater generosity and sensitivitytowards the self and thus acts preventively. The projects in schools and in some businessorganizations therefore fulﬁl political purposes concerning both health andeducation.
Identity of school: The school is involved in its very own identity as school, and not
as a place of early intervention, and teachers are involved as teachers and not as amateurpsychologists. The educational projects intentionally do nothave the aim of performing
early diagnosis. The danger of stigmatization would be too great. The effect is to reducethe fear of psychiatry in an indirect but effective way, thus smoothing the way to seek helpin case of need. The open encounter inspires conﬁdence and seems to be a good alternativeto symptom-related measures of early diagnosis.
Methods of anti stigma activities at schools
Unlike the Austrian anti stigma campaign, ‘Irre menschlich’ does not work for or insteadof teachers, but closely cooperates with them. In contrast to the sister project ‘Irrsinnigmenschlich’ in Leipzig, the Hamburg project not only organizes special project weeks,which are not rooted in educational legislation, but organizes educational units of variouslengths, according to the needs and possibilities, the teacher’s specialization and the age ofthe children. Minimum duration is six double periods for authentic information, encountersand evaluation or own references.
The teachers will be advised and receive ‘media boxes’ with material put together ac-
cording to the class’s needs, containing books, movies, background information etc. Thecentral element of each teaching unit is the direct encounter, the personal meeting ofschoolchildren and crisis-experienced persons, who act as ‘teachers of life’. The educationalgoals differ according to the available time, the teacher’s specialization and, above all, thechildren’s age.
In lower grades, the goal is to reinforce in a casual way children’s openness and awareness
by introducing certain children’s books, e.g. Die Bettelk ¨onigin (The Beggar Queen) [19],
and by the encounter with an exceptional person, e.g. the central person of the book, theartist Hildegard Wohlgemuth. In middle grades, the development of prejudices and theireffects is the central theme. In upper grades, it is possible to reﬂect also the child’s own life,own goals, possible crises and available resources.

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A ‘TRIALOGIC’ CAMPAIGN IN HAMBURG 63
So far, class teachers of lower grades and teachers of religion and ethics (9th grade),
biology (10th grade), German, history, art, philosophy and psychology (upper grades) havebeen involved, often organizing cross-subject teaching. The projects are almost equallydistributed among lower, middle and upper grades. So far, a total of 1400 children havebeen reached, about 600 of them by projects offered at the local psychiatric hospital.
Speakers are available on a variety of subjects such as psychosis, drugs and psychosis,
mania, eating disorders, self-injuring behaviour and borderline disorders.
‘Psychiatrie macht Schule’ – special open days for schoolchildren
Open days are most often meant for neighbours and former patients, relatives and colleagues.For the past three years, the target groups have been expanded with the aim of inviting theschools of the neighbourhood. The school panels ’ motto of the ﬁrst year was: ‘It is normal
to be different’; in the second and third years, the main theme was ‘Psychiatrie machtSchule’ which is, in German, a play on words and might be translated by ‘Psychiatry goesto school’, but also meaning ‘Psychiatry is the accepted thing’. Inviting schoolchildren ispart of an overall strategy – it is, in a way, a return invitation with respect to projects atschools all the year round. The programme includes documentary ﬁlms, an art exhibition,music contributions, food and drink, information booths, book displays, presentations andspecial workshops for schoolchildren.
The short presentations on various disorders in the lecture hall are intentionally pre-
sented in pairs: professional experts and persons who have experienced mental illnessjointly present the subject. But the main focus is on workshops, which are adjusted topupils of different ages and are organized in cooperation. The workshops for schoolchildren are similar to the teaching projects at schools; i.e. the personal encounter is mostimportant: one or more persons who have had contact with psychiatry speak about a moreor less youth-speciﬁc subject and their own personal experience, their presentation beingsupported by professionals. Most coordinators have now gained experience in talking aboutthemselves in the psychosis seminar. Some of them were already involved in school projects.A small remuneration rewards their participation. This is meant to underline their positionas coordinators.
Overview of dialogical workshops for pupils on open days
Coordinators make presentations and distribute materials that have been devised specif-ically for children on many different areas of importance for mental health and for theunderstanding of mental conditions.
Extreme sensitivity – thin-skinned psychosis
(1)Die Bettelk ¨onigin – The Beggar Queen – by artist Hildegard Wohlgemuth. Model of
a book for children – reading, ﬁlm, pictures (10 years and older).
(2)Pias lebt …gef¨ahrlich – Pias lives …dangerously – an outsider talks about his life
on the street (12 years and older).
(3)Die erste Psychose – First episode psychosis. Extreme obstinacy – how can it start?
Are there typical crises? What happens to the soul, to the family? (14 years andolder).

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64 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
(4)Stimmenh ¨oren – Hearing voices – messages from the inner world? (12 years and
older, parents, teachers).
(5)Durch Drogen psychotisch – Drug-induced psychosis. How great is the danger?
Report from own experience with cannabis (14 years and older).
Extreme moods – mania and depression
(6)Gute Zeiten, schlechte Zeiten – Good times, bad times. Depression and mania –
extreme ﬂuctuations of mood and energy. How is the dynamism perceived? What ishelpful, what isn’t? (14 years and older).
Grenzg ¨anger – borderline
(7)Auf der Grenze der Realit ¨at– At the borderline of reality. What does it mean, if the
personality is easily ‘disturbed’? Which questions and conﬂicts are typical? What ishelpful to achieve greater stability?
(8)So rot wie Blut – As red as blood. Sniping, self-injuring behaviour. What is the
message? Own experience, speaking through clay ﬁgures (14 years and older, parents,teachers).
Dependence and addiction
(9)Is(s) was? – Magersucht und Bulimie? – Eating disorders – starving, throwing up
or both – for an ideal of beauty? (12 years and older).
(10) Bekifft in der Schule? – Stoned in the school? How dangerous is cannabis? (14 years
and older, parents, teachers).
(11) Hell-Blau – Light drunk. Alcohol problems already at 12? Information, prevention
(12 years and older, parents, teachers).
Anxiety
(12) Angst und Zwang – normal oder verr ¨uckt? – Anxiety and compulsion. Normal or
mad? Aren’t certain fears and compulsions part of life? Where is the borderline? (12years and older).
The selection of titles intends to appeal to adolescents and introduce the subject effortlessly
but without triviality. The aim is to put right the clich´ es one might entertain about the
coordinator and his or her history and to raise interest in further information.
Experiences and results
In the ﬁrst year, 500 schoolchildren were reached, and 800 in each of the following twoyears, coming from about 40 schools, mostly high schools, comprehensive schools andvocational schools. The most interesting ones were workshops that were organized jointlyby patients and professionals. Most panels had to be offered two and three times over, dueto the great interest. For many teachers, the open day is the beginning of further cooperation

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CONCLUSION 65
with ‘Irre menschlich Hamburg’, but at the same time they value the visit to the hospital as
having educational importance of its own.
The beneﬁt of this project is emphasized by a ﬁrst evaluation. The schoolchildren assess
the workshops with psychiatry-experienced persons with marks of 1 or 2, but give signiﬁ-cantly lower marks for only professional workshops. About one third of students reportedhaving been affected personally by the subject – either because of their own unusual experi-ences or those of relatives and friends. The patients who participate beneﬁt from increasedempowerment.
Own affectedness
An amazingly high number of schoolchildren report in an anonymous questionnaire thatthey recognize the various experiences of the patients in their own experience: 18.5% fromtheir own experience, 17% from the family and 38.3% from friends. With respect to theirown experience, the percentage of male adolescents (20.9 vs. 17.3%) is slightly higherthan that of female adolescents, with respect to family experience (14.4 vs. 18.3%) andexperience among friends (33.7 vs. 40.4%) it is slightly lower. It must be kept in mind thatthese ﬁgures refer to all disorders and cannot be differentiated.
Assessment and marking
The pupils were asked to assess and mark the workshops. The return rate was more than80%. The analysis of the differentiated assessments has not yet been done. The markingaccording to school marks (1–6) is encouraging. A total of n=555 (81.4%) marks have
been given: the mean value was 2.1, the standard deviation 0.8. Workshops in cooperationwith (former) patients received highly signiﬁcantly better marks. The assessment by maleadolescents is slightly better than that by female adolescents. Adolescents with own orfamily experiences confer better marks than those without own experience. Although thesedifferences are not statistically signiﬁcant, they are remarkable because they are ratherunexpected: Boys also respond to the subject. Moreover, adolescents, directly or indirectlyaffected, can be reached by this kind of workshop, without feeling unsettled or shamed!
In regard to the coordinators, their task usually starts an amazing process of empowerment
for persons who have experienced psychosis. The schoolchildren impress by the high levelof openness and tolerance in their discussions. For younger children, unusual perceptionsare still relatively natural, the encounter with unusual persons falling on fertile ground.As for adolescents of upper grades, the focus is often on self-awareness, on their ownvulnerability to crisis, on their own image of human beings and on tolerance within theclass. Thus, education and information on ‘being different, madness, mental illness’ is notonly relevant for health policy but also in the context of education. In a world with everincreasing pressures, it is important to prepare schoolchildren for life and discuss with themtheir own life plans and possible crises.
Conclusion
One of the main obstacles to successful treatment of schizophrenia is the stigma frequentlyassociated with the disorder. The diagnosis of schizophrenia and the disorder’s perceptiblecharacteristics can mean that the heterogeneity of behaviour attributable to the illness is

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66 ‘FIGHTING STIGMA AND DISCRIMINATION BECAUSE OF SCHIZOPHRENIA – OPEN THE DOORS’
negatively judged and leads to social exclusion and disadvantage. Educative and training
programmes such as Open the Doors can improve knowledge of mental illness and mod-ify negative attitudes in the general population as well as in speciﬁc target groups, such asthose employed in mental health care. In addition to providing information about the nature,causes and treatment of mental disorders, interventions should place special emphasis onachieving a more positive media portrayal of people with mental illness and on promotingpersonal contact with them. Information on the disorder and on the factors underlying itsstigmatization should reach relatives, friends, colleagues and supervisors, as well as physi-cians, therapists, and nursing staff. The frequently expressed desire for more encounters withpeople having mental illness – for instance, during open days at psychiatric institutions –and for more art exhibitions or theatrical productions involving those with mental illnessare in line with the German anti stigma programme interventions. Interventions againststigma and discrimination toward those with mental illness can be effective, not only inspeciﬁc target groups, but also for the general public. In addition to disseminating informa-tion about mental illness, special emphasis should be placed on achieving a more positivemedia portrayal of people with mental illness and on promoting personal contact with them.
Open the Doors Germany initiated the ‘Alliance for Mental Health’ together with the
DGPPN, assisted by the Federal Health Ministry under the auspices of the Federal HealthMinister. With the introduction of the ‘Alliance for Mental Health’ at the Annual Congressof the DGPPN in Berlin in November 2004 a trend-setting emphasis was placed on futureengagement in the provision of psychiatric care and in German society generally. Theparticipants in this programme, among them representatives of all project centres of Openthe Doors Germany, want to devote their combined strength in the coming years to thede-stigmatization of mental illnesses by informing the public and speciﬁc target groups onvarious social levels throughout Germany.
Acknowledgements
The following persons contributed to this chapter: Josef Aldenhoff, Matthias Angermeyer,Anja Esther Baumann, Romain Beitinger, Thomas Bock, Petra Ursula Decker, Arno Deister,Wolfgang Gaebel, Werner Kissling, Hans-J¨ urgen M¨ oller, Dieter Naber, Manuela Richter-
Werling, Kerstin Wundsam and Harald Z¨ aske.
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Lepper, M.R. (1991) Effects of structured cooperative contact on changing negative attitudestoward stigmatized social groups. Journal of Personality and Social Psychology 60, 531–544.
15. Pinfold, V ., Huxley, P., Thornicroft, G., Farmer, P., Toulmin, H. and Graham, T. (2003) Reducing
psychiatric stigma and discrimination. Evaluating an educational intervention with the policeforce in England. Social Psychiatry and Psychiatric Epidemiology 38, 337–344.
16. Corrigan, P.W., Rowan, D., Green, A., Lundin, R., River, P., Uphoff-Wasowski, K., White, K.
and Kubiak, M.A. (2002) Challenging two mental illness stigmas: Personal responsibility anddangerousness. Schizophrenia Bulletin 28, 293–309.
17. Baumann, A., Z¨ aske, H. and Gaebel, W. (2003) The image of people with mental illness in
movies: Effects on beliefs, attitudes and social distance, considering as example the movie ‘TheWhite Noise’. Psychiatrische Praxis 30, 372–378.
18. Bock, T. and Naber, D. (2003) ‘Anti stigmakampagne von unten’ in Schulen – Erfahrungen der
Initiative ‘Irre Menschlich Hamburg e.V .’. Psychiatrische Praxis ,30(7), 402–8.
19. Strathenwerth, I. and Bock, T. (1998) Die Bettelk¨ onigin. Freiburg i. Br. , Kore Edition.

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5Stigma and health care staff
Juan J. L ´opez-Ibor Jr.1,3, Olga Cuenca2and
Mar´ıa-In´es L´opez-Ibor3
1Past-President, World Psychiatric Association
2Psychiatrist and President of Llorente & Cuenca Communications, Spain
3Department for Psychiatry and Medical Psychology, Faculty of Medicine, Complutense
University of Madrid, Spain
Introduction
The World Psychiatric Association Schizophrenia Open the Doors programme in Spain was
conceived as a nationwide activity in contrast to other countries where the implementationwas local or oriented to selected populations. Being the ﬁrst to adopt such a perspective, andhaving started shortly after the programme in Calgary, Canada, we had to decide to carry itout in the whole of the country (“ La Esquizofrenia Abre las Puertas ”, Figure 5.1). As the
second location to carry out such a scheme, we had to improvise some new strategies andto learn by experience. On the whole the experience was very successful and led to a betterknowledge of the nature of stigma and the actions to take to ﬁght it.
What is stigma?
Stigma is a Greek word meaning ‘mark’, and is derived from the verb stizein ‘to tattoo’,
‘to prick’, ‘to puncture’. Stigma is usually a mark of disgrace or infamy, which leads toaction: discrimination against the stigmatised person. To discriminate is to make distinctionsprejudicial to people different from oneself (in race, colour or sanity). Discrimination leadsto prejudice.
The stigma is a mark embedded on the subject, where it stays, often for ever. Even the
stigmatising person loses the control of the stigma once it is imposed, and efforts to removethe mark make it more prominent. Stigma is a primitive but powerful coping strategy onoccasions very efﬁcient for survival because it identiﬁes for ever a danger. By stigmatizing, acharacteristic of the danger becomes an indelible distinctive mark, impressed on the memoryof the stigmatiser.
The WPA programme has described the vicious cycle of stigma (Figure 5.2) which has
to be attacked simultaneously at different levels.
Stigma on schizophrenia is so prominent and so much related to the nature of the disease
that it could be also named ‘stigmophrenia’ and it is the main barrier for the appropri-ate treatment and rehabilitation of those who suffer from mental illness. The response tostigma is more stigma. The behaviour of stigmatising normal persons towards patients withschizophrenia is the same that patients have with their delusions. It is an imposed experi-ence, self-evident, full in certainty, irrefutable by a logical line of argument because when
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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70 STIGMA AND HEALTH CARE STAFF
LA ESQUIZOFRENIA
ABRE LAS PUERTAS
Figure 5.1 La Esquizofrenia Abre las Puertas logo
confronted with madness (one’s own or others’), the answers are the same. Madness is
perceived as losing one’s own mind.
Mental health care in Spain
Spain is a country of about 550,000 km2inhabited by about 40 million persons, highly
decentralized in 17 Autonomous Communities which, among other things, are responsible
for providing health care. Health care is ﬁnanced through the general budget of the admin-
istration, that is, by income taxes. It covers 100% of the population and takes care of almost
every need. In mental health only formal psychoanalysis and hypnosis are excluded. When
the WPA programme started there were in Spain 5 psychiatrists per 100,000, 0.9 psychiatric
Observable Abnormality
Burden of
Abnormality
Stigma
Discrimination Social DisadvantageMore DisabilityHeightened Abnormality
and Loss of Self-respect
Figure 5.2 WPA programme: vicious cycle of stigma

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BASIC DESIGN 71
beds per 100,000, no psychiatric hospitals with more than 1000 beds and 80% of people
with schizophrenia were living with their own family.
Basic design
The programme was initiated by deﬁning its goals and the actions to be carried out to reachthem, according to the following schemes.
Objectives
(1) To enhance public attitudes of the target population groups selected by the programmein order to reduce the stigma, discrimination and prejudices towards people who suffer fromschizophrenia; (2) empowerment of people close to those who suffer from schizophreniaand to the patients themselves to become leaders in ﬁghting the stigma.
Strategy
The initial strategy was to carry out a nationwide publicity, campaign to increase awarenessof schizophrenia, knowledge about the disease, its treatment and consequences, and to createa more positive attitude of the general public towards those who suffer from the disease. Inorder to test the feasibility of the project, a pilot programme in the Region of Madrid was tobe followed by nationwide implementation. As will be described later the outcome of thepilot programme changed the strategy.
Working groups
Several committees were created in order to carry out the different tasks.
Steering Committee
Responsible for the overall implementation of the programme. The members were JuanJos´eL ´opez-Ibor, Maria Dolores Crespo, Olga Cuenca and Blanca Reneses.
Programme Committee
Consisting of psychiatrists and other professionals interested in the programme, responsible
for the translation and adaptation of the WPA programme to local needs.
Coordination Committees
Consisting of representatives of all the organizations, public or private, involved in the careof patients with schizophrenia at national and local administration levels. Health care inSpain has been decentralized and is under the responsibility of the governments of the 17Autonomous Communities.
Teaching Committees
Consisting of psychiatrists and other mental health professionals who had shown interestin the programme.

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72 STIGMA AND HEALTH CARE STAFF
Research survey
General Public
Spain II1998 2000 1999 2001
Pilot Program in Madrid “Schizophrenia Open the Doors” in Spain2002New work
hypotheses
Surveys among
patients, relatives and
psychiatristsNew strategic
action model
aimed at the
groups closest
to the disorderSurvey among
the General
Public in MadridResearch survey
General Public
Spain I
Figure 5.3 Research in Spain
Sponsors
The Ministry of Health and Consumer Affairs, the Ministry of Social Affairs, the Depart-
ments of Health and Social Services of the different Communities of Spain, the Spanish
Anti-Drugs Agency, the Agencies of Health and Consumers of the different city councils
involved, the National Association of Relatives of People with Schizophrenia (FEAFES)
and their local organizations and others (e.g. universities).
The Lilly Company (Spain) provided full ﬁnancial support for the period 1998 to 2006.
Headquarters
The headquarters of the project was located at Llorente and Cuenca,1a communication
company, in order to make the functioning more efﬁcient.
Pilot programme in the Madrid Region
An essential aspect of the WPA programme is that its strategy and activities are based on
local data about knowledge on attitudes towards schizophrenia in the target populations and
other data concerning health care. Three surveys at the general population level plus others
on patients, relatives, psychiatrists and other health care personnel were carried out with
the help of appropriate communication experts in the ﬁeld together with research on stigma
in the mass media and the impact of the programme (Figure 5.3).
Survey among the general public (Madrid Region, October-November 1998)
An independent public opinion poll was comprised of 518 random telephone interviews
with people aged between 18 and 65 in urban and rural areas of the Community of Madrid.
1Hermanos B´ ecquer, 4 28006 Madrid (Spain). Tel: +34 91 563 77 22; fax: +34 91 563 24 66: e-mail: ocuenca@
llorenteycuenca.com; www.openthedoors.com.

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PILOT PROGRAMME IN THE MADRID REGION 73
Main results
Only 17% had seen, heard or read some of the advertisement campaign about schizophrenia
or about persons that suffer this illness in the part six months: 73% through TV , 12% in news-papers, 11% in magazines, 5% on radio, 6% in books, 2% in pamphlets and 1% on billboards.
The typical patient suffering from schizophrenia is described as: mentally disturbed
(19%), aggressive (18%), someone with strange behaviour (15%), a nervous (14%) orunstable (10%) individual, or as somebody who feels persecuted (7%) or who hears voices(4%). Of those surveyed 8% knew somebody who has been treated for schizophrenia.
Causes of schizophrenia were 24% mental disturbance, 19% genetic problems, 13%
stress, 12% social problems, 6% childhood problems, 5% family problems and 4% drugs.
Of the interviewed persons 79% reported that schizophrenia is a problem that does no
affect in any way their own life.
Of the sample 84% were in favour of the creation of a place to house 6 to 8 persons with
schizophrenia in his or her neighbourhood
Sixty per cent thought that there is some kind of pharmaceutical treatment available at
this time to treat the illness, but 96% did not know any names of relevant drugs.
Forty per cent believed that schizophrenia is an illness that can be defeated, whereas 44%
said that it was not.
A cluster analysis of all the answers identiﬁed ﬁve main types of individuals:
1.Those who accept schizophrenia (38%): they consider schizophrenia a mental illness
with possibilities of social rehabilitation. They are mainly women over 55 years ofage with primary education and medium-lower class.
2.The rationalizers (31%): they believe that schizophrenia is a mental illness without
many possibilities of social rehabilitation. They are mainly men 18–34 years of agewith university degrees and medium-medium class.
3.The anti-schizophrenics (5%): do not want to know anything about the illness. They
are mainly men over 55 years of age with elementary education and medium-lowerclass.
4.The hesitants (16%): they doubt that recovering through medication is possible and
do not believe in rehabilitation. They are either men or women, 45–54 years of age,with secondary education and medium-medium class.
5.The complacents (9%): they consider that recovering through medication is possible
but do not believe in social rehabilitation. They are either men or women, 35–44 yearsof age, with secondary education and medium-medium class.
Conclusions
There is little stigmatizing of people with schizophrenia amongst the Madrid population,probably because of a lack of knowledge about the illness and a high level of tolerance.Therefore, the results do not allow the design of speciﬁc messages, selecting a general audi-ence or selecting mass media activities. Furthermore, the results suggest that an open publiccampaign would have the risk of increasing the stigma while increasing the knowledgeabout the disease.
Therefore, the strategic model of the programme was altered to cover different key
audiences from inside out instead of from outside in (Figure 5.4).

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74 STIGMA AND HEALTH CARE STAFF
Student s & Te acher s
Neigh borhood Work
Social
Associations
Politici ans &
Legislators
Gener al PublicHealth
Profe ssionals
The Pre ssSocial
Service s
Other Ment al
Health
Profe ssionalsFriend s
Familie sIndivid uals
Psychiatrists
Outside o utside inside In side
Figure 5.4
Surveys among patients, relatives and psychiatrists (Madrid, March 1999)
They were carried out to know the opinions and experiences of these population groups and
identify speciﬁc situations of rejection and the origin of this rejection.
Anonymous questionnaires about the diagnosis, treatment, causes and origin of the illness,
motives of rejection, etc. were collected from 60 persons with schizophrenia, 40 family
members and 42 psychiatrists.
Main results
Seventy-one per cent of the patients know that they suffer from schizophrenia, but do not
know its cause or origin, two-thirds believe that schizophrenia can be overcome, more than
half have felt rejected due to aggressiveness secondary to the illness, 60% have experienced
rejection sometime when visiting the psychiatrist, but 60% consider that the nursing staff
treats them well. Only 17% say that their illness does not bother them and the most bothering
thing for those that suffer the illness is isolation. Furthermore, patients believe that their
illness does not allow them to drink alcoholic beverages, study or drink coffee.
Most of the relatives believe that schizophrenia is not curable (77%), and the worst
features of the illness are the ‘laziness’ and, to a lesser extent, isolation, aggressiveness,
lack of personal hygiene and not being able to lead a ‘normal’ life. They also believe that
patients cannot drink alcohol or coffee, and cannot study, drive, live alone or have children.
Psychiatrists were interviewed with a questionnaire speciﬁcally prepared for the pur-
pose by Dolores Crespo, Olga Cuenca and Juan Carlos G´ omez. Sixty-two per cent of the

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PILOT PROGRAMME IN THE MADRID REGION 75
psychiatrists have felt rejected by their patients on some occasion because ‘they do not ac-
cept the treatment’, ‘they do not have insight about their illness’ and because they considerthe doctor to be a ‘controller’. Fifty-two per cent have felt rejected by the patients’ familiesbecause they ‘see no improvement’ in the patient and ‘do not accept the illness’. Forty-oneper cent consider that schizophrenics are chronic patients who cannot be helped much.These results shocked us a little, because all the burdens experienced are really responsi-bilities of the psychiatrists who have to take care of compliance, to enhance insight and toestablish a mutually trustful relationship with patients and relatives. Furthermore, 30% ofthe psychiatrists have felt rejected by other health professionals because ‘they solve little’and their ‘specialty is not very useful’; only 12% believe that the patient feels rejected dueto the illness and 33% believe that the family members see the patient as a ‘problem anda burden’. Forty-six per cent of the psychiatrists believe that the neighbours of the personswith schizophrenia see them as strange people that cause fear.
The main conclusion of these surveys is that rejection is concentrated among the groups
closest to the disorder, and that it is there where action should be prioritized, hoping that thegroups closer to the illness will also be better able to modify their perception and behaviour.
Activities undertaken
The ﬁrst task was to elaborate the informative and educative material, translating the ﬁrsttwo volumes of the WPA programme and preparing other leaﬂets and texts. The logo, nameand stationery were also created during this initial period (May–December 1998).
The programme was then presented to the Local Action Committee for discussion and
approval.
The next step was seminaries to train the Teaching Committee members on schizophrenia,
the stigma and the discrimination (March–April 1999). They concentrated on aspects notalways well considered in everyday practice such as what are the burdens of the diseaseon patients and their families, who were affected in their lifestyles, awareness of rejectionand the ways to ﬁght it, on how to use the materials provided and skills to communicateto the general public and to the mass media. A theoretical module updated knowledgeon the illness, the stigma and the discrimination, and a practical module consisting ofcommunications techniques allowed the putting into practice of the acquired knowledge.Two such seminars took place; these were attended by 48 psychiatrists and were evaluatedas ‘very interesting’ by 96% of the participants.
The next step was to organize lectures, seminars or talks to patients, family members and
other audiences involved with the illness (health professionals, neighbourhood associations,etc.), aimed at spreading knowledge and achieving social sensitization. The objectives wereto transmit to the patients and their families a message of hope with regard to therapeuticalternatives, to provide the patients and their families with the necessary tools to learn tolive with the illness and to present the Madrid Programme and its results. The speakers werea psychiatrist as representative of the local professional association and a representative ofthe local association of patients and relatives. Twenty-nine teachers presented a total of 49conferences to associations of patients and their families, professionals of mental healthcentres, hospitals, clinics, residences, etc., as well as other groups (‘cultural houses’) ofthe Autonomous Community of Madrid. Nine hundred and ninety persons assisted in thesepresentations and 354 anonymous evaluations were gathered from the persons present that,in more than half the cases, qualiﬁed the conferences as ‘very positive’.

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76 STIGMA AND HEALTH CARE STAFF
Nationwide campaign
During the initial period meetings of the different committees at a national level were
convened and training seminars of the National Action Committee were organized.At the same time there were presentations of the programme at special sessions in na-tional congresses of the discipline, always accompanied by press conferences in whichnational and local leaders appeared with representatives of users’ associations and oftenresponsible persons of the mental health administration.
After the pilot programme was held in the Regional Community of Madrid, and after
analysing the results of the research conducted among the general population in Spain, theprogramme was extended to cover most of the country. In the period 2001–6 it covered thewhole mainland plus the Balearic and Canary Islands.
On the basis of the guidelines established in the 1998 experience, a programme of activ-
ities was drawn up on the basis of the strategic model and aimed chieﬂy at the groups inclosest proximity to the disorder. (Talks were held for patients and relatives, and there wereseminars with psychiatrists and press conferences.)
Nationwide General Population Survey I (April–March 2000)
The main objectives of this survey were to ascertain the knowledge, perception and attitudesof the Spanish adult population with regard to schizophrenia and the people that suffer thisillness and to evaluate if there are differences with respect to the survey carried out inMadrid in 1998.
The characteristics of the survey were: Universe : adult general population living in
centres with over 2000 inhabitants; Sample : 1028 interviews distributed in a proportional
way to the stratiﬁed universe, according to Autonomous Communities and inhabitants;Method : telephone interviews; Sample error :±3.1%; Content : a structured questionnaire
with a content similar to that carried out in Madrid in 1998.
Main results
Twenty-one percent had seen, heard or read some advertisement or campaign on schizophre-nia in the last two months (compared with 27% in Madrid and 17% in 1998), mainly onTV or in the press. Twenty-seven percent remembered having seen, heard or read somenews (compared with 39% in Madrid and 17% in 1998). The recall is higher in Madrid andits surroundings and it increases with the population of the area, the standard of generaleducation and social class; it is also higher in women and in people of 35–54 years old.Eighteen percent of those interviewed knew a person treated because of schizophrenia, and3% of them, in the close family. In Madrid, this knowledge reaches 22%, a higher numberthan the one recorded in 1998. Forty-one percent of the interviewed population considerthat schizophrenia is a curable illness but the great majority are unaware of its treatment.Fifty-one percent of the general public believe that schizophrenia is not a curable illness.Only 16% believe that the illness can be cured.
With regard to the attitudes created by the people with schizophrenia, the idea that they
are a public nuisance is mainly rejected, and more than half of the population does not thinkthat they tend to live at the expense of the state-run health care. They think that patientscan work normally; however, approximately half of the general public shares the idea thatit is frequent to see these people talking to themselves and/or shouting in the streets. The

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NATIONWIDE CAMPAIGN 77
idea that people with schizophrenia are not intelligent is mainly rejected. Around a half
of the population believes that patients with schizophrenia suffer from double or multiplepersonality, hear voices telling them what to do or need to be admitted into hospital. Theattribution of a violent personality and the menace it could be, split the general public into twoquantitatively similar groups and, in general, they consider that people with schizophrenianeed medication, although around a half of the population believe that there are alternativetreatments (psychotherapy and/or social support).
In general, the surveyed population expressed integrative behaviours, such as willingness
to talk, work, start a friendship or sleep in the same room with someone suffering fromschizophrenia, an attitude which decreases when the relationship gets closer.
Clusters
Five clusters were identiﬁed with regard to the attitudes toward the patients and the be-haviours they manifest:
1.The integrators (30%).
2.The distant/excluders (24%).
3.An integrated social/exclusive familiar group (34%).
4.Two stigmatizing proﬁles (stigma understood as rejection without a clear knowledge
about the illness and the people who suffer from it and those who would be ashamedif they or a relative suffered from schizophrenia) (5%).
5. Those who consider these patients as mentally handicapped (7%).
In summary, the results for the whole of Spain show a similar degree of information
and attitudes as in Madrid, with some different clusters appearing. What is more importantis that in Madrid the knowledge had increased, the attitude improved (more people werewilling to recognize that there are more persons with schizophrenia among their relativesor acquaintances) and the stigma decreased.
Nationwide General Population Survey II (July–August 2001)
After the pilot programme was held in the Regional Community of Madrid, and afteranalysing the results of the research conducted among the general population in Spain, theprogramme was extended to cover most of the country.
On the basis of the guidelines established in the 1998 experience, a programme of ac-
tivities was drawn up on the basis of the strategic model and aimed chieﬂy at the groupsin closest proximity to the disorder (talks held for patients and relatives, seminars withpsychiatrists and press conferences).
Once the main activities of the national campaign were completed, the same survey was
conducted again among the Spanish population in order to evaluate the impact.
The characteristics of the survey were: Universe : adult general population living in cen-
tres of over 2000 inhabitants; Sample : 988 interviews distributed in a proportional way to the
stratiﬁed universe, according to Autonomous Communities and their inhabitants; Method :
telephone interviews; Sample error :±3.1%; Content : the structured questionnaire used
in 2000.

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78 STIGMA AND HEALTH CARE STAFF
Main results
The number of people who say they remember news of advertisements about schizophre-
nia hasn’t changed ( +1%); nevertheless, the recall of the content of these has changed,
since just 15% remember aggressive or violent behaviours, compared with 23% one yearbefore. ‘Mentally ill people’ is the way most often used to describe people affected withschizophrenia as portrayed in this information (16%) and a new category appears, showinga greater knowledge of the disorder: ‘persons with loss of reality’ (6% of those surveyed).The knowledge of someone affected by a serious emotional problem increases from 26% to34%, and when asked who those were, 10% place them at the nuclear family (self, spouse,children) versus 7% in 2000; furthermore, schizophrenia is the most quoted illness (49% in2001 versus 44% in 2000).
The knowledge of speciﬁc aspects of schizophrenia (symptoms, behaviours) grows from
16% to 30%. When a deﬁnition of schizophrenia is provided, the acknowledgement ofsomeone affected by the disorder also grows compared with the 2000 survey (18% vs.25%) and also grows as regards those who had acknowledged knowing someone beforea deﬁnition was provided (17% vs. 25%). There is an improvement in the knowledge oftreatments available, the answers becoming more medical and more speciﬁc. The percentageof people who believe the illness can be defeated almost doubles: 30% in 2001 versus 16%in 2000, and 25% believing the main cause of the illness is genetic (7% more than in theprevious survey).
Cluster analysis
The attitudes towards persons with schizophrenia and the behaviour developed clusters inﬁve groups:
1.Those who accept them (38%): consider schizophrenia as a mental illness but with
possibilities of social rehabilitation. Female over 55 years of age with primary educa-tion and medium-lower class.
2.The anti-schizophrenic (5%): does not want to know anything about the illness. Male
over 55 years of age with elementary education belonging to a medium-lower class.
3.The realist (31%): schizophrenia is a mental illness without many possibilities of
social rehabilitation. Male 18–34 years of age with university degree and medium-medium class.
4.The indecisive (16%): doubts that recovering with medication is possible and does
not believe in social rehabilitation. Either male or female, 45–54 years of age, withsecondary education and medium-medium class.
5.The complacent (9%): considers that recovering with medication is possible but does
not believe in rehabilitation. Either male or female, 35–44 years of age with secondaryeducation and medium-medium class.
The clusters show some interesting changes (Figure 5.5). The extreme groups remain
almost the same: who accepts it, not knowing much about it (2000: 30%; 2001: 28%); theanti-schizophrenic (2000: 24%; 2001: 22%). The group who stigmatizes because of shameincreases slightly (2000: 5%; 2001: 8%). The social integrator group/familiar excluders

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NATIONAL, REGIONAL AND LOCAL MEDIA CAMPAIGNS 79
DISTANT /
EXCLUSION PRONE STIG MA /
SHAME INTEG RATORS /
KNOWLED GEABLE
INTEGRATORS /
LACKING KNOWLEDGEPerception
of the characteristics and behaviour of people
suffering from schizophrenia
Behaviour
prompted by
people with
schizophrenia:
RiftNormal Jobs Not share
room
Mentally
handicapped
personMultiple
personalities
Talk to
themselves
STIGMATIZER
NEUTRALDangerous
Friendship
Public
nuisance Ashamed
Not talk
Figure 5.5 Evolution of the categories
evolves to a new typology: the integrator/knowledgeable (27%), with a less discrimina-
tory attitude towards the illness and the socially stigmatizing group, who consider these
patients mentally retarded (2000: 7%), evolves to a more neutral stigmatization (15%), less
conditioned by wrong beliefs about the illness.
Overall summary of activities
One hundred and eighty psychiatrists took part in the programme by sitting on committees
or taking an active part in organizing activities, 50 more mental health professionals received
information or contacted the programme’s Technical Secretariat, 65 talks and lectures were
held and were attended by more than 1800 people (lay public, patients, relatives and mental
health professionals), over 1200 copies of V olume II and News Dossiers were handed out
and altogether 223 news items about the programme were either published or aired by the
news media all over Spain.
National, regional and local media campaigns
Although the mass media have been used as the basic vehicle to reach patients, relatives
and health professionals, it has also been taken into consideration that they are the main
information source for the general public (the main information source for 90% of the
population, according to the survey made by the Robert W. Johnson Foundation in 1990).
When we started the programme, the most prevalent and stigmatising news items in Spain
were related to violent behaviour or to ‘chronicles of crime’, because media can contribute to,
create and perpetuate stigma. The factors increasing this type of media coverage are, among
others: the evolution of mass media towards a sensationalistic approach in order to generate
higher audience ratings; these types of stories are usually provided by journalists with a
generalist background, not by those specialized in health, who have a certain knowledge
of mental health and how to use the terminology properly; barriers between entertainment

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80 STIGMA AND HEALTH CARE STAFF
and information are falling, from sitcoms to soap operas, mental health issues are also
portrayed in ﬁction; a wrong choice of words reinforces wrong beliefs (e.g. describingchanging weather as ‘schizophrenic’), bad news is good news (crime reports, unsuccessfultreatment stories), good news is no news (social integration means a ‘normal life’, and thereseems to be nothing newsworthy in a normal life).
Media professionals can diminish the stigma by working together with mental health
professionals to reduce this sort of coverage and to achieve balance and fairness in mediacoverage. This is more easily achieved when journalists choose the right language whencovering issues and using mental health terms, double-check the information with expertsand get rid of their own prejudices.
Basic strategy
It was decided to use the media to make public perception more balanced by two means:stigmatising information items should be decreased gradually and positive coverage shouldneutralize as much as possible the negative coverage. Media relations were managed so thatthe coverage focused mainly on informing the public about schizophrenia’s symptoms andtreatments, rather than just on the institutional aspects of the initiative. The press materialshave been carefully elaborated in order to ensure that the main messages were about thedisorder: clear and speciﬁc information about the causes, treatment, stigma, social burden; afew messages were selected to repeat and explain in depth. In order to maximize the impactof the information spread, media activities were initially focused on regional journalistsinstead of acting at a national level, adapting press releases to regional data and taking intoconsideration the regional media characteristics, involving spokespersons from the region.
In order to deal effectively with the media it is important to understand the role of the
media in ﬁghting stigma, to knowing the media and how journalists work, to be aware ofthe barriers and fears on both sides and to be able to build messages for each type of mediaand to get them through.
Materials developed speciﬁcally for journalists
A ‘Useful guide for mass media about schizophrenia’ was distributed to journalists. This
is an information source to treat correctly the contents related to schizophrenia.
Spreading extended information about the disorder: translation, adaptation and publica-
tion of the book What Is Schizophrenia, How Can it Be Treated and How to Combat
the Stigma (V ol. II).
Monitoring the press, in order to be able to react when negative messages appear (e.g. an
informative letter was sent to the media regarding a violent incident that occurred inMadrid, ‘Schizophrenic doctor kills some of her colleagues’. It explained how violenceand schizophrenia are related.
2)
Analysing the information pieces published quantitatively and qualitatively, in both na-
tional and regional press.
Opening a speciﬁc area for journalists in the webpage www.openthedoors.com and in
future www.fundcionlopezibor.es.
2Interestingly enough, the Minister of Health and Consumer Affairs sent the programme a letter of congratulations for the
initiative, commenting how useful it was to her to better understand the disease and the stigma attached to it.

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NATIONAL, REGIONAL AND LOCAL MEDIA CAMPAIGNS 81
Selective media campaign
Following the survey of the general public in Madrid (1999) the programme decided to carry
out a selective media campaign. A press release on the programme and on schizophreniawas prepared and press conferences were organized with the participation of psychiatristswho had attended training seminars. It was considered that the same messages put out bymany different people would be most effective. One of the stigmas of psychiatry is thatprofessionals never agree on anything.
The information was covered by local (16 news items) and national press (2 items), radio
broadcasting (11 local and 7 national) and TV (2 local and 1 national, this in a maximumaudience news programme with a total audience of 6.5 million people
3).
On the whole the campaign was covered 39 times by information in newspapers, radio
or TV in the Autonomous Community of Madrid. The total accumulated audience wasmore than 34 millions persons and the information about the disease not only increasedbut changed its format. It appeared now in pages or spaces devoted to health or socialissues and not linked to crime and more often than not the news was about the disease(“schizophrenia”) and not about the patient (“the schizophrenic”) and putting emphasis onmore positive aspects of treatment and management.
The launching of the programme in the press
The programme was presented to the media in Madrid on 16 July 2001, leading to 184information items being published or aired on 130 different media outlets with an es-timated audience of 23.7 million people. The contents focused on the characteristics ofthe schizophrenia Open the Doors programme, on schizophrenia having the highest levelof stigma, on the speciﬁcity of the stigma of different diseases, mental and physical, oncollaboration with many partners and on the fact of being a programme and not only aonce-in-a-lifetime campaign.
Information about the programme has been spread through presentations and interviews
with the mental health professionals involved (in total there have been 14 press conferencesand 223 information pieces published or broadcast about the program in the Spanish media).
Reports
In order to ﬁnd out how the media present news and topics about schizophrenia, the pro-gramme in Spain has developed different periodical reports for analysing the news in thewritten media. ‘Periodical study on the informative treatment of schizophrenia in Spanishwritten media’ has been carried out every three months since June 2005 by Llorente &Cuenca, and covered news published in the written press in the principal media of Spain,national, regional and specialist. A more extensive study was made on 2005: ‘Report on thepresence and projection of the image of schizophrenia in the written print media in Spain inthe years 2003–2004’, carried out by the Institute of Ofﬁcial and Business Communicationsof the Complutense University of Madrid.
3The interview was broadcast on 19 October 2000, and it gave the chance to spread live the key messages about schizophrenia
for more than 6 minutes.

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82 STIGMA AND HEALTH CARE STAFF
Other activities with the media
Every time a set of actions was carried out a press conference was convened where a press
release was distributed and interviews with professionals, users and responsible persons ofthe mental health administration and other opinion leaders were held.
The programme also organized a three-day course at the Universidad Complutense sum-
mer school for mental health professionals and journalists, in collaboration with the SpanishPress Association and the Asociaci´ on Nacional de Informadores de la Salud (ANIS, Na-
tional Association of Health Informers), including among the speakers the main journalistscovering health issues. A similar approach was taken to organizing symposia and workshopsat national and international psychiatric meetings.
Another activity has been the preparation of a dossier for psychiatrists to be able to
convene appropriate and consistent messages to the press on the occasion of importantnews about mental disorders such as when a patient commits a sensational crime or whenthe ﬁlm A Beautiful Mind was ﬁrst shown in Spain.
Conferences and participation in scientiﬁc meetings
Over recent years, several events have been organized with the objective of increasing the
awareness about stigma among different audiences, such as university students and healthand other professionals who work with patients.
The main activities were:
Participation in the 2nd International Congress ‘Together against Stigma’ held in
Kingston, Canada, in October 2003. Creation of abstracts and later lectures ‘Evo-lution of knowledge of and attitudes towards schizophrenia among the Spanishpopulation after the implementation of Schizophrenia Open the Doors on a na-tional level’, and ‘Fighting the stigma in the media: the experience of the Span-ish “Schizophrenia Open the Doors” Programme’. Both lectures were presented byJuan J. L´ opez-Ibor.
Presentation of two posters of the programme for the ‘XII Biennial Winter Workshop
on Schizophrenia’ held in Davos, Switzerland in February 2004: ‘Fighting stigma inthe media. The Spanish experience’ and ‘Changes in knowledge and attitudes towardsschizophrenia in Spain’.
Workshop on the stigma of schizophrenia for psychiatrists and students, presided by Juan
J. L´opez-Ibor at the conference ‘Value-based psychiatry and the stigma of schizophre-
nia’ (13–14 December 2004, San Carlos Clinical Hospital) The participants were Pro-fessor Juan J. L´ opez-Ibor, Norman Sartorius (Switzerland), Ahmed Okasha (Egypt),
Mar´ıa In´es L´opez-Ibor, Blanca Reneses, Olga Cuenca.
Organization of the conference ‘Psychiatric morbidity in prisons’ and the workshops
‘Schizophrenia in 21st century society’ held in Alicante on 1 December 2004. Theproposed initiatives had the goal of reaching the key audiences: professionals andfamilies.
A remarkable activity took place on July 2005, with the organization of a session on
‘The stigma of mental illnesses in the media’, within the Summer Courses of the Com-plutense University of Madrid. The course attempted to gather the opinions of everyone

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WEBSITE 83
involved in mental illnesses and communications, hence opinions were sought from
experts representing a variety of interests: psychiatry (with national and internationalrepresentatives), families of patients, public institutions and the media.
During 2006, the ‘WPA Centennial Congress’, Madrid, 19–22 April 2006 was the sce-
nario for a special seminar about ‘Thresholds and limits of mental illness in the media’.
Website
The programme in Spain www.esquizofreniabrelaspuertas.com/ developed the Spanish ver-sion of the programme website www.openthedoors.com. The website has been updatedrecently to make it more dynamic and increase trafﬁc with links to internal pages and aninformation service of news related to schizophrenia and general mental health news.
Epilogue
The World Psychiatric Association Executive Committee while presenting the activitiesof Schizophrenia Opens the Doors at the General Assembly in Cairo in September 2005proposed that after nine years the programme had achieved its goals and should be halted,recommending member societies and professional pursue anti stigma activities on theirown, based on the experience and the materials of the WPA programme.
In Spain, after six years of generous and unrestricted support the Lilly Company con-
cluded that the purposes of the programme had been achieved.
We have shown that it is possible to change the stigma of schizophrenia at both general
public and mass media levels nationwide, which was the ﬁrst objective of the programmein Spain.
In 2006 the Confederaci´ on Espa˜ nola de Agrupaciones de Familiares y Enfermos Mentales
(FEAFES, Spanish Confederation of Groups of Families and Patients of Mental Illnesses),who strongly collaborated with ‘La Esquizofrenia Abre las Puertas’, decided to launch itsown anti-stigma campaign. This means that our second objective, empowerment, has alsobeen achieved.
In the future we will follow anti-stigma activities in collaboration with other organiza-
tions under the patronage of the Juan Jos´ eL´opez-Ibor Foundation (http://fundacion@lopez-
ibor.com). On 17 December 2007, it is foreseen to re-launch the contents of the programmethrough the celebration in Madrid of a conference regarding the integration of mental pa-tients in society, together with an exhibition of work realized by social associations andother institutions.
Acknowledgements
Ministerio de Sanidad y Consumo (Heath and Consumers Affairs Ministry), Ministeriode Trabajo y Asuntos Sociales (Labor and Social Affairs Ministry), Plan Nacional sobreDrogas (National Anti-Drug Plan), FEAFES – Confederaci´ on Espa˜ nola de Agrupaciones
de Familiares y Enfermos Mentales (Spanish Confederation of Groups of Families andPatients of Mental Illnesses), ANIS – Asociaci´ on Nacional de Informadores de la Salud
(National Association of Health Informers), Fundaci´ on Sanitas, Fundaci´ on Areces.

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6Evaluating programmatic needs
concerning the stigma ofmental illness
Beate Schulze
University of Zurich, Department of General and Social Psychiatry, Zurich, Switzerland
Introduction
Stigma has been described as the single most important obstacle to the recovery, social
integration and quality of life of people with mental illness [1–5], as well as to the provisionof timely and adequate mental health services. [6]. Hence those suffering from mental illnessare disadvantaged on two levels: (1) adverse societal reactions leading to social exclusion andcausing help-seeking barriers due to fear of the negative consequences of being diagnosedwith a mental illness, and (2) the rather marginal position of mental health care withinmedicine when it comes to health care funding as well as ﬁnancial support for research [6].
A large number of programmes to ﬁght stigma and discrimination due to mental illness
have been initiated – on the local, national and international levels. The largest global efforthas been undertaken by the World Psychiatric Association’s ‘Open the Doors’ Programmeagainst Stigma and Discrimination because of Schizophrenia [7], aiming to:
rIncrease the awareness and knowledge of the nature of schizophrenia and treatmentoptions.
rImprove public attitudes about those who have or have had schizophrenia and theirfamilies.
rGenerate action to eliminate discrimination and prejudice. (p. 1)
How, then, are these objectives to be realized? How are they understood from the point
of view of those who should be the main beneﬁciaries of anti-stigma initiatives – those withmental illness and their families? Which strategies should be pursued to obtain programmegoals? Who should be addressed by the programme, which groups should be involved inanti-stigma activities?
It becomes apparent that programme planning requires many decisions. For them to be
informed choices, a thorough knowledge of stigma and its consequences is needed.
Research on stigma has attempted to throw light on the various components of the stigma
process. Both enquiries into attitudes and beliefs about mental illness among the public
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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86 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
and analogous behaviour experiments measuring stigmatising behaviours have produced
a predominantly negative picture. People with a mental illness are perceived to be un-predictable, aggressive, dangerous, unreasonable, unintelligent, lacking in self-control andfrightening [8], and a large share of the general population would reject entering socialrelationships such as sharing a ﬂat with someone with schizophrenia, recommending a per-son with schizophrenia for a job, or having him or her looking after their children [9, 10].Likewise, experimental studies revealed that if a person mentioned a mental health problem,she or he faced greater difﬁculty in ﬁnding a job, renting an apartment or being accepted ina neighbourhood [11–13].
Why assessing need?
Does the clear picture emerging from stigma research imply that we already know whatwe need from an anti-stigma programme? While there is a wealth of information fromscientiﬁc inquiry, clinical experience and the media as well as experience from previousefforts to challenge stigma and discrimination, speciﬁc needs for efforts against stigma anddiscrimination typically arise from a concrete local context. Populations that seem quitesimilar demographically, or face a common problem such as a mental illness, may perceivetheir needs as being very different from each other. So while most programmes againstmental-health-related stigma will share the global aims spelt out above, the paths to achievethese goals may vary considerably between programme sites. Factors affecting choices onthe most effective strategies to combat stigma in a particular local setting include the percep-tion of concrete concerns among the programme’s target groups, speciﬁc cultural meaningsascribed to mental health and illness, the organisation of mental health care, relevant policychoices and legal regulations, as well as the resources available for designing and imple-menting anti-stigma interventions. A thorough evaluation of speciﬁc programmatic needsis therefore a crucial prerequisite for the effectiveness and sustainability of an anti-stigmaintervention.
Although vital for programme success, a decided focus on identifying needs and problems
will leave us with an incomplete picture. It is equally important to include in the planningprocess an analysis of capacities, skills and resources that can be brought forward by both
individuals and communities in combating stigma. In fact, paying attention to the resourcesand skills of people with mental illness and their families seems inherent in the very causeof anti-stigma efforts. Not only is a thorough understanding of the resources and skillsavailable to put programmatic goals into practice essential for a sustainable implementationof anti-stigma strategies, but it simultaneously counteracts stigmatising notions of peoplewith mental illness as being incompetent, lazy, unintelligent, and, above all, primarily inneed of help and protection. In addition, conducting a capacity assessment can contributeto enhancing service users’ self-esteem, combating internalized stigma, and to developingcoping skills to successfully deal with adverse environmental reactions. In this chapter,programmatic needs will therefore be understood to include both the needs and the resourcesof relevant stakeholders in anti-stigma efforts.
Needs assessment – concepts and deﬁnitions
To set the scene for introducing assessment methods and practical steps in assessingprogramme needs, the reader will be made familiar with relevant concepts and deﬁni-tions. What is the purpose of a needs assessment? How do we conceive of needs andcapacities?

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NEEDS ASSESSMENT – CONCEPTS AND DEFINITIONS 87
What is the purpose of assessing need?
In general terms, a needs assessment is conducted to derive information andperceptions of
values as aguide to making policy and programme decisions that will beneﬁt speciﬁc groups
of people [14]. In other words, it is the ﬁrst step in making the central programme decisions.
By deciding which groups to include in a needs and capacity assessment, one already deﬁnes
the programme’s beneﬁciaries. Hence a needs assessment can also provide baseline data
against which programme results can be judged as part of programme evaluation (see Stuart,
Chapter 8 in this book).
What is a needs assessment?
Needs assessment is the process of identifying and evaluating needs in a community or
other deﬁned target population. In the process, ‘problems’ of a target population are being
described and possible solutions discussed. A needs assessment applies
a systematic set of procedures undertaken for the purpose of making decisions about
program or organizational improvement and allocation of resources, setting priorities
for later action on the basis of identiﬁed needs. [14, p. 4]
Needs assessment starts from the assumption that groups of people have needs that are
not being met and not being addressed adequately. It seeks to uncover unmet needs, both
recognized (e.g., expressed as demands) and latent. In addition, it involves identifying
individual, group and community resources that can be brought forward to increase mental
health awareness and ﬁght stigma. A summary of the central characteristics of a needs
assessment is given in Figure 6.1.
What are needs and capacities?
Aneed is generally considered to be
rA discrepancy or gap between ‘what is’, or the present state of affairs, and ‘what should
be’, or a desired state of affairs. [14]
rA gap between real and ideal that is both acknowledged by community values and
potentially amenable to change. [15]
A needs assessment
is a systematic approach that progresses through a defined series of phases
gathers data by means of established procedures and methods designed for specific purposes
sets priorities and determines criteria for solutions so that planners can make informed decisions
leads to action that will improve programmes, services, organisational structures and operations as well as
values, or a combination of these elements
sets criteria for how to best allocate available money, people, facilities and other resources
(Adapted from [14])
Figure 6.1 Deﬁning needs assessment

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88 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
Capacity refers to
rBoth collective and individual resources that can be mobilised to bridge the gap iden-
tiﬁed in the needs assessment process.
Three elements are common to the concept of needs. First, a need is neither the present
(e.g., young people’s unawareness of help-seeking options) nor the future state (e.g., bet-ter access to mental health services, including improved outcomes for those experiencingmental distress) – it is the gapbetween them. A need is therefore an inference drawn from
examining a present state andcomparing it with a vision of a future (better) state . Second,
this gap should lend itself to consensus andchange . Third, adequate skills andresources
must be available to affect the desired change. These three elements are crucial in creatingbuy-in into anti-stigma programmes and enhancing the motivation of project participants.
As Witkin and Altschuld [14] point out, needs should not be confused with something we
need – like more health care funds for innovative treatments, more positive reporting aboutmental health issues in the press, crisis consultation for family members, money to hire anextra social worker, or school programmes for mental health promotion. All of these areprovisions required or desired to ﬁll a discrepancy – they are solutions, means to an end.There is a risk in conducting a needs evaluation to confuse these two meanings of ‘need’.
To relate these deﬁnitions to their concrete application in developing anti-stigma inter-
ventions, Figure 6.2 gives an overview of relevant needs and capacities to be identiﬁedin deﬁning programme priorities and pathways of action in ﬁghting mental-health-relatedstigma.
Whose needs and capacities? Target groups and levels of need
Successful anti-stigma interventions will be targeted to speciﬁc groups and communities.In this, two aspects can be distinguished:
1) Those who are to ultimately beneﬁt from the programme.
2) Groups whose attitudes and behaviour should change to relieve stigma-related burden
or who are in the position to affect change at community or societal levels.
Planning a needs assessment must start with drawing up a ﬁrst list of potential target
groups [16]. Experience shows that it takes multiple avenues of action to make a sustainedimpact on public perceptions and social provisions for people suffering from mental healthproblems. This requires analysis of needs pertinent to each speciﬁc direction a programmeintends to be going. For example, a programme in a rural community that hosts a housingproject for mentally ill people identiﬁes three main target groups to reduce the social distancebetween residents of the project and the local community: house owners who fear that thevalue of their property will decrease with mentally ill people present in the community,the clergy who exert a strong inﬂuence on public opinion and could be a multiplier inpromoting tolerance and acceptance, and bus drivers and ofﬁcials of the public transportcompany connecting the village to a nearby town that hosts important facilities for dailylife. Consequently, the perceptions of these groups must be obtained in order to deﬁneprogramme needs.

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NEEDS ASSESSMENT – CONCEPTS AND DEFINITIONS 89
NEEDS
Subjective stigma experiences. The perspective of people with mental health problems and their families is
essential in deciding on the type of anti-stigma interventions. Their experience of mental illness and its social
consequences makes them experts in identifying the most pressing issues.
Public attitudes. What does the general public know and think about mental illness? What are the central
ingredients of the stereotype of mental illness? How would people behave towards someone with a mental health
problem? Are they able to recognize mental illness, and what treatment recommendations would they make?
Policies. What is the legal situation of people with mental illness? Do mental health services get an appropriate
share of resources in the healthcare system? Which laws are in place that protect the rights of those with a
mental illness?
School curricula. To what extent and how are mental health issues part of teaching curricula? What do
teachers need to adequately support young people who have a mental health problem? What kind of information
is relevant to the needs and abilities of particular age groups?
Media images. What are the general themes in media reporting on mental illness? On which occasions is
mental illness a newsworthy issue? How could the focus of media reporting be broadened to include positive
aspects and evidence-based mental health information?
Targets. What should be achieved by an anti-stigma programme? Service users, families, mental health
professionals, media representatives, health politicians and other groups will have different expectations
regarding the outcome of anti-stigma efforts. As an input for programme planning, priorities of each group can be
obtained.
Messages . What information is the programme to provide on mental health problems to fill the gap between a
current lack of knowledge and a future desirable state of adequate mental health literacy? Which myths should
be dispelled? How does the programme want to position the topic? Messages are the channels for bringing
these points across.
Needs for support. What additional support is required for specific projects? This question arises at the outset
of a programme and should be a regular element in monitoring the programme in action. People involved in
projects should have a forum to regularly voice their experiences, concerns and needs for support.
CAPACITIES
Interests – Talents – Expertise. Among the stakeholder groups, who would be interested in contributing to anti-
stigma activities? Do people have specific expertise (e.g. in fundraising, media relations, graphic design,
research skills) that could be useful for the anti-stigma programme? What particular talents are there among
service users (e.g. public speaking, professional skills, photography, art)?
Ideas – Concepts – Strategies . Which resources can be brought forward to achieve programme targets? Who
can provide what type of useful expertise, contacts and previous experience with anti-stigma or health education
efforts? Obtaining multiple perspectives enhances creativity.
Motivation – Commitment . Identifying those among the central stakeholders in the health professions, user and
family organisations, politics, media, etc. who are motivated to become actively involved in anti-stigma efforts. Is
stigma on the agenda of top-level management and/or decision-makers? Which factors produce motivation and
what can be done to sustain commitment throughout an anti-stigma programme?
Fundraising. Gathering expertise and ideas on funding channels (e.g. inviting people with considerable
experience with projects addressing mental health and other social issues, community leaders, representatives
of government agencies, foundations and possible sponsors). Generating ideas for creative fundraising
measures for specific projects.
Figure 6.2 Types of needs and capacities pertinent to anti-stigma programmes
Deﬁning the speciﬁc groups a programme intends to work with is an obvious step in
programme planning. Less obvious, but equally important to consider in deﬁning a needs
assessment strategy, is the fact that there are different levels of need, with different target
groups associated with each [17]:
Level 1 (primary) : Service recipients, i.e. those for whom a system or programme ulti-
mately exists. Alternatively, ‘primary-level needs’ refers to the perspective of those
who are to beneﬁt from a new service or programme to be developed. Examples include
clients, patients, students, information users and potential customers.

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90 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
Level 2 (secondary): Service providers and policy makers, i.e. those who deliver services
and thus affect the lives of service recipients, exerting a strong inﬂuence on level 1needs. On the one hand, this implies a strong potential for these groups to be agents ofchange, on the other it may point to a need for changes in their knowledge, attitudesand behaviour. Target groups representing level 2 needs include health professionals,employers, administrators, policy makers and others.
Level 3 (tertiary): Resources and inputs into solutions. Examples of this level of need
are buildings, facilities, supplies, equipment, skills, programme delivery systems, timeallocations, legal regulations and budget requirements.
Ideally, a valid needs assessment is primarily directed at level 1. It seeks to determine
the needs of the people for whom the organisation or programme exists. Primary-level tar-get groups in anti-stigma programmes are people with mental illness and their families.Enquiring about their concrete experiences with stigmatising attitudes and discriminatorybehaviour will provide valid information to identify the most important areas for interven-tion, and then deﬁne the relevant target groups at level 2 as well as level 3 resources to bedeployed in alleviating stigma.
Whereas this sequence of determining needs may appear self-evident, research reveals
that it is not: most needs assessments are actually conducted at levels 2 and 3 [18]. Thismay be a reﬂection of the fact that the majority of needs assessments are carried out underthe auspices of an organisation and conducted by staff within it. Their attention is likelyto be centred on obvious concerns in their daily practice, such as a lack of personnel orﬁnance (level 3) or a need for training in a novel therapeutic intervention (level 2). Movingour perception beyond needs that strike us as relevant and urgent from a professional ororganisational perspective, then, is the key to an effective needs assessment strategy. Afterall, we do not want to learn what we already know.
Steps in assessing needs and capacities – planning the process
Careful planning is required to conduct an effective needs assessment. The needs assess-ment process consists of three phases: (1) exploration and planning, (2) data gathering and(3) utilization [17].
1. Pre-assessment – exploration and planning
The starting phase serves to investigate what knowledge is already available on the needs ofthe target groups, to determine the focus and scope of the assessment and to gain commitmentfor all stages of the assessment [14].
From the start, a needs assessment should be a concerted effort with all relevant stake-
holders involved. The ﬁrst step therefore consists in setting up a needs assessment planninggroup and identifying a key person in charge of the process [32]. Due to the political innature of needs assessments, it is recommended to select the needs assessment coordinatorfrom outside the organisation or system where needs are to be identiﬁed. For example,facilitators could be found among social scientists at a university or college, with NGOsthat may routinely scan for needs in their area of activity, or in the planning department ofthe local authority.
Next, it is important to ascertain what we already know about stigma, and its concrete
impact in a particular local context. For example, one could draw on results of previous

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STEPS IN ASSESSING NEEDS AND CAPACITIES – PLANNING THE PROCESS 91
assessment or research, consult statistics on health care funding, or use available media
databases to analyse mental health reporting in the press. Scanning for available informationis important in order to avoid embarking on costly studies where relevant knowledge forplanning an anti-stigma programme already exists.
Based on gaps identiﬁed concerning the information available, the purpose and scope
of the needs assessment will be deﬁned. Whose needs are to be better understood? Whatadditional facts and opinions are needed to tailor effective anti-stigma activities? Whichcapacities are required for implementing a viable programme, and who could provide them?Following from these considerations, a speciﬁc set of questions should be developed thatshould be answered in the assessment.
Once the research question for the assessment is clear, the planning group will determine
1) what kind of data to gather
2) the sources from where to obtain the data3) the methods best suited for data collection, and4) how the data should be used.
It is important not to lose sight of the intended application of needs assessment data
to make sure the right kind of data will be collected with the adequate amount of detail.Resources for an anti-stigma programme may be scarce and should thus be used wiselyfrom the very start of the process.
2. Assessment – data gathering
The task of the assessment phase is to document the ‘what is’ status, compare it with thevision of ‘what should be’, and to determine the magnitude of the needs and their causes[14].
At the outset of data collection, it is important to deﬁne which level of need (levels 1,
2, and/or 3, see above) the assessment aims at. This step can serve to review the needsassessment strategy regarding whether it takes adequate account of the needs of peoplewith mental illness and their families. For instance, a spectacular event such as a crimecommitted by a supposedly mentally ill perpetrator has produced a huge media interest,primarily the kind of coverage that reinforces negative stereotypes of mental illness (forexamples, see [19]). The planning group may be incited to focus its assessment on theattitudes of journalists as changing their reporting may appear the most pressing issue in thecurrent situation. However, there might be other aspects of stigma and discrimination thatimpact more strongly and directly on the daily lives of those with mental illness, such as anincreasing exclusion from the labour market or the treatment of people with mental illnessin medical emergency rooms. Needs assessors may lose sight of these other concerns intheir planning in view of a dramatic event that seems to call for immediate action.
Once levels of assessment have been deﬁned, desired measurable ‘end states’ must be
determined for each level. For an anti-stigma programme, such goals include:
Level 1:
rIncrease the proportion of people with mental illness working in regular jobs
by 5%.

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92 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
rHave user and family representatives on all mental health boards and service plan-
ning bodies.
rEliminate legal discrimination (e.g., change health insurance policies excludingcoverage for mental health problems).
Level 2:
rReduce stress and burnout among mental health professionals to improve quality of
care.
rReduce inadequate use of language in media reports on mental health by 20%.
rSet up a ‘hotline’ for teachers who seek advice on mental health problems amongtheir students.
rEnhance police ofﬁcers’ de-escalation skills in contact with people in acute psychoticstates and reduce the rate of physical coercion by 20%.
Level 3:
rIncrease the proportion of health care funds spent on mental health services by 3%
in 2 years.
rAcquire a building to open an integration ﬁrm (e.g., a hotel, a graphic design ofﬁce,a shop) to employ people with mental illness in regular jobs.
rEstablish a crisis intervention service to prevent hospitalization in acute phases andreduce care-giver burden among the caring families.
Next, the appropriate methods for data collection will be selected. Many options are avail-
able for conducting the assessment (see next section). Data analysis focuses on identifyingthe most pressing problem areas, and on determining discrepancies between the currentstate and a vision for the future. At the end of the assessment phase, all data collected willbe synthesized and results will be summarized in a set of needs statements in tentative orderof priority.
3. Post-assessment – utilization
In phase 3, ﬁnal priorities are established, solution strategies are selected, and an actionplan is developed, implemented and evaluated. In order to utilize ﬁndings from needsassessments in planning interventions, it is necessary to deﬁne selection criteria, examinealternative solutions, and choose and implement the strategy that has the highest potentialof resolving the need [14, 17]. Criteria for assigning priorities among needs include:
rThe magnitude of discrepancies between current and target states.
rCauses and contributing factors to the needs.
rThe degree of difﬁculty in addressing the needs.
rThe effect on other parts of the system or other needs if a speciﬁed need is met or notmet.

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 93
rThe costs of implementing solutions.
rPolitical and other factors that might affect efforts to solve the need, including com-
munity values, local and national priorities, and public expectations.
It is important to involve all relevant stakeholders in this process and inform those con-
sulted in the needs assessment on the progress in developing interventions, as well as toallow them the opportunity to offer suggestions and input.
Strategies for assessing need: approaches and methods
Overview of methods
This section gives an overview of needs assessment methods. Methods will be introduced forassessing particular dimensions of needs and capacities. This overview starts with presentingmethods for enquiring the perspective of target groups for anti-stigma activities. Special
emphasis will be placed on focus groups, a method particularly suited for exploring the needsof service users and family members that has widely been used in the context of the WPAGlobal Programme against Stigma. Second, the reader will be acquainted with assessmentmethods for understanding the context of anti-stigma activities , i.e. on analysing public
attitudes, media reporting, and policies and legal regulations.
A detailed outline of how to plan and conduct data collection using the methods por-
trayed here is beyond the scope of this chapter. For a more thorough understanding andpractical guidelines, literature for further reading is recommended for each of the proposedapproaches. Advantages and disadvantages of the different needs assessment methods aresummarized in Table 6.3.
Enquiring target groups’ perspectives
1. Individual methods – the interview
Purposes of interviewing
In assessing programmatic needs for anti-stigma efforts, interviews are particularly usefulfor two different purposes. First of all, they allow obtaining information from service users
and families . In health research, the use of interviews is recommended to gather ﬁrst-hand
information on the patients’ perspective concerning their expectations or experiences withregard to interventions [21]. However, as assessment methods focusing on the individualare costly and time consuming, the interview approach is proposed for assessing ﬁrst-levelneeds from the perspective of experts among the programme’s intended beneﬁciaries. Key
informants include representatives of user and family associations as well as service usersand relatives represented on mental health boards (e.g., as ombudspeople). Through theirpolitical activity, they are likely to be aware of the kind of grievances articulated withinboth groups. In addition, user and family activists can supply information on barriers andfactors that have contributed to stigma, or about previous programmes or solutions and thereasons for their success or failure. Consequently, such expert interviews can produce a listof areas that should be examined further through other techniques, e.g., in focus groups(see below).
The second purpose for using interviews in the planning phase of anti-stigma programmes
is to investigate the perspectives of key stakeholders in ﬁghting stigma. Stakeholders are

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94 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
individuals with a particular interest in the topic that often goes hand in hand with spe-
cialized knowledge about the issues or needs, either because of their position within anorganisation or community or because of their expertise [14]. Such key informants includethe headteacher of the local school, the police chief, health politicians, mental health ex-perts, a lawyer specializing in anti-discrimination legislation, or important employers in theregion. Interviews with these stakeholders can identify central concerns from the perspec-tive of those in the position to actually affect change. They can also reveal additional usefulinformation such as organisational or system factors to consider, or existing documents,previous needs assessments and evaluations you could examine. Moreover, interviews havebeen found to be especially well suited for obtaining information from busy people [15]. Bydiscussing in depth the areas they know best, the participants may feel that they are usingtheir time to best advantage.
Planning for the interview
Planning includes determining the purpose of the interview and the kinds of informationwanted, deciding on the type of interview suitable for the planned enquiry, developing theinterview protocol, and selecting and training the interviewers.
Step 1: Deciding on the type of interview
Interviews can be classiﬁed according to the level of structure they offer in terms of questionwording and response formats. On one end of the continuum, there is the fully structured
interview . It uses closed-ended items where both questions and response options are pre-
scribed. This technique is predominantly used in face-to-face or telephone surveys withlarge samples, which are discussed later in this chapter.
Since the purpose of an assessment should inform the choice of the data collection
method, this section on approaches for exploring ﬁrst-level needs will focus on open-
ended interviewing approaches . These aim at gathering qualitative data, i.e. statements
and themes rather than numbers. Closed questions, on the other hand, are less suited asthey may reﬂect needs assessors’ assumptions rather than allowing respondents to expressstigma experiences in their own words.
There are three basic approaches to collecting data through qualitative interviews. The
informal conversational interview relies entirely on the spontaneous generation of questions
in the natural ﬂow of interaction. It offers maximum ﬂexibility to pursue information inwhatever direction appears to be appropriate, depending on what emerges from a particularsetting or from talking with one or two individuals in that setting [22]. However, the inter-viewer will have an overall guiding focus in mind that will inform his or her interviewing.In the context of anti-stigma programme development, this technique may be useful to geta general idea of how an anti-stigma initiative will be received by mental health expertsthrough informally eliciting their ideas at a psychiatry congress.
With the general interview guide approach, the interviewer follows a set of questions
and suggested follow-up questions that serve as a basic checklist during the interview tomake sure that all relevant topics are covered. Beyond that, interviewers are free to varythe wording of questions as well as the order in which they are asked. Additional follow-upquestions are asked if the interviewer believes they would yield useful information [15]. Thisapproach is most useful for interviews carried out to assess need in the context of anti-stigmaprogrammes. It permits interviewees to openly express their views and gives them the chanceto lead the interviewer to areas of stigma they ﬁnd most pressing. At the same time, the set ofissues outlined in the interview guide ensures that all topics of interest to the needs assessorare covered. The interview guide approach, however, leaves a large share of the responsibility

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 95
for the quality of data collection with the interviewer. Giving interviewers more leeway on
how to actually conduct the interview requires substantial skill on their part and/or extensiveinterviewer training. Simultaneously, the rich body of information produced by qualitativeinterviews requires more time, expertise and essentially money for data analyses.
A third opportunity is thus the standardized open-ended interview . Here, a set of ques-
tions is prepared that is carefully worded and arranged with the intention of taking eachrespondent through the same questions with essentially the same words [22]. This approachis particularly useful if you have little time, money and interviewing expertise at hand foryour needs assessment. For example, the interview is highly focused so that interview time isused effectively. Using a more standardized interview format also allows you to collect needsassessment data more quickly by using a number of different interviewers simultaneously.Pre-deﬁned questions and written interviewer instructions help to minimize variability inskill and interviewing style and thus ensure the validity of the information gathered. Finally,efﬁciency can be increased as data analysis is facilitated by making responses easy to ﬁndand compare.
In summary, there are two central criteria for making decisions on how extensively to
structure the interviews for assessing need [15]:
1. The more you want to discover needs rather than test knowledge, the less you should
structure the interviews.
2. The less time and money you have for your project, the more you should structure
your interviews.
Step 2: Developing the interview protocol
The protocol includes the format and instructions for the interviewer as well as the waythe answers will be recorded, either in writing or by recording. A tape recording gives acomplete picture of the interview, which is important for some interviews. You should beaware, however, that taping the interview may inhibit free expression. More importantly,tape recordings require time and money to transcribe. Word-for-word transcriptions takefrom 2 to 6 hours for every hour of interview time [23]. Overall, needs assessments do notrequire the same precision in recording data as rigorous academic research. Summarizing theinterview is a good alternative to transcription. This involves transcribing critical statementsin their entirety, but condensing other statements. For most needs assessments, however,effective note-taking during the interview is sufﬁcient.
Step 3: Select the sample of respondents
With open-ended interviews, remember that data analysis is a more extensive undertaking.The less structured your interviews are, they more you may want to interview speciﬁcpeople. Therefore consider purposefully selecting a smaller sample of key people, rather thandrawing a representative sample of the given population. In purposive sampling , individuals
are selected because they represent a range of diverse and important perspectives. It isrecommended that you interview ‘knowledgeable insiders’ who have the best perspective onanti-stigma needs within a particular community or organisation. These people are selectedbecause they can offer a broader picture, for instance, of community issues or societal trendsthan you would obtain from a random sample [15]. Rather than aim at a large representativesample, you purposefully select 10 to 15 individuals who can offer critical insights. Makesure you include more people in your sample than you need to interview. Some individualswill decline to participate while others will be difﬁcult to contact.

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96 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
Step 4: Select and train the interviewers
With open-ended interviews, the interviewer essentially represents the data collection tool.As we know from survey research or psychological tests, considerable effort goes intodeveloping assessment instruments to ensure the reliability and validity of the informationobtained. With qualitative enquiry, data quality fundamentally depends on the skills of theinterviewers and the rapport they can develop with interviewees.
Skilful interviewers are especially capable in active and empathic listening and enjoy
one-to-one, face-to-face situations. The more knowledge they have of the needs assessmentproject, the better. Knowledgeable interviewers have more credibility with intervieweesand can take informed decisions about which follow-up questions to ask and which leads tofollow [15]. It is also preferable that interviewers do not have a personal stake in the outcomeof the needs assessment. In terms of rapport with the respondents, research has shown thatthe best results are obtained by interviewers with whom interviewees can identify, especiallywhen language, ethnicity, cultural background, sex or age could make a difference in theresponses.
It is essential to train interviewers. The best training contains a combination of teaching,
practice and supervision. In particular, interviewers should get the chance to experience howdifferent ways to phrase a question can affect the type of information obtained from theinterviewee’s responses. For example, dichotomous questions such as ‘Do you feel sociallyexcluded because of your mental illness?’ or ‘Do you prefer concealing your mental healthproblems in the workplace?’ provide interviewees with a grammatical structure suggestinga ‘yes’ or ‘no’ answer. By contrast, open-ended interviewing strives to get the personinterviewed to talk – to talk about experiences, feelings, opinions and knowledge [22]. Anexample of how question wording can affect the quality of responses is given in Table 6.1.In addition to practising interviewing skills, interviewers need to understand the purpose ofthe interviews, why they are important, and how the information will be used. They need
Table 6.1 Question wording and interview outcomes. Example adapted from Quinn Patton, [22]
Genuinely open-ended alternatives
Actual question asked with richer responses
Question: Have you ever felt
stigmatised because of yourmental illness?Q: What has changed since you developed your
mental health problem?
Answer: Yeah, many times. A: First, people around me were all insecure. They
didn’t know how to deal with my illness and thengradually stayed away. My psychiatrist told methat I can forget about ﬁnishing my studies. Andwhen I go to see my GP now with a sore throat oranything, he keeps wondering whether I’m notmaking it all up.
Q: Did you try to hide your mental
illness from others to avoidstigmatising responses?Q: How did you react to people treating you
differently?
A: That was part of it. A: Well, at ﬁrst I didn’t want to see anyone. I was so
ashamed, confused. Then I felt really let downand got angry with my so-called friends whoweren’t around when I needed them most.Eventually, I joined a self-help group, which gaveme conﬁdence and helped me to talk to peopleabout my illness. I also made new friends there.

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 97
instructions on contacting participants, handling ambiguous responses, and recording data
[15]. This background information about the project should be taught by someone on theneeds assessment committee.
Step 5: Conducting the interview
Before setting out, the interviewer explains the purpose of the interview and how the resultsare going to be used, and assures the interviewee of conﬁdentially. The actual interviewgenerally begins with questions that are non-threatening and relatively easy to answer,thereby enabling the respondent to be at ease. Potentially threatening questions, e.g., aboutpersonal attitudes or own discriminating behaviours, should be asked near the middle of theinterview, while demographic information should be obtained at the end [14, 15].
Probing techniques are an essential part of interviewing. Probes are used to gain greater
detail, elaboration or clariﬁcation. Who, what, when, where or how questions can encouragerespondents to provide more detailed information. Silence is also an effective elaborationprobe. Skilful interviewing involves resisting the temptation to ﬁll gaps in the conversation.Probing too soon can result in missing important information that the respondent mayhave otherwise volunteered. Sometimes, interviewees may offer unclear, contradictory orirrelevant answers. To clarify them, interviewers can ask neutral questions such as ‘Whatdo you mean?’ or ‘Why do you say that?’, restate the original question, or summarize whathas been said so far to encourage additional comments.
Step 6: Analysing interview data
To analyse interview data, read through your notes or a summary of the tape recording andlook for pertinent themes. In this, you can use the questions asked during the interview tosuggest categories for data analysis. Additional categories may emerge from the responsesof the participants. Options for analysing qualitative needs assessment data will be discussedin more detail in the section on focus groups.
Recommendations for further reading
The reader has been familiarized with some central considerations in planning and con-ducting interviews. To obtain a more thorough understanding, the section on qualitativeinterviewing (pp. 339–427) in Michael Quinn Patton’s excellent textbook on Qualitative
Research and Evaluation Methods [22] gives a very instructive introduction. It provides
a comprehensive overview of the issues at stake, including an outstanding discussion ofquestion options, and presents many illustrative practice examples. Further helpful refer-ences on interviewing from a social science point of view include [24] and [25]. For thosewanting to learn more about the use of qualitative interviews in the context of health careand health promotion, [15] and [26] provide useful sources of information.
2. Group methods – focus groups
Focus groups are group discussions involving 8–12 participants and are guided by a facil-itator. Their purpose is to discuss a limited number of issues in order to identify a rangeof opinions and ideas. Originally, focus groups were used in market research to identifycostumer preferences so that products could be matched to perceived wants and needs, andeffective communication strategies developed.
Effective anti-stigma programmes have to be based on the needs of speciﬁc groups.
Interventions must be appropriately tailored to these needs, and communicated in ways thatthe programmes’ target groups will understand. Because focus groups start from the needsand experiences of those who experience stigma and discrimination, they help developersof anti-stigma programmes address important and concrete needs.

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98 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
More speciﬁcally, they:
rEmpower service users and family members by acknowledging their expert role and
soliciting their assistance in deﬁning effective interventions.
rHelp identify and recruit interested and qualiﬁed individuals for programme taskgroups.
rInvolve all members from relevant groups in programme development and so helpsustain ongoing support throughout the programme.
rHelp balance the interests of programme planners with the perceived needs of theintended beneﬁciaries of the programme.
Why focus groups to examine level 1 needs among service users and family members?
Focus groups produce a rich body of data expressed in participants’ own words. Theyallow respondents to qualify their responses and explain their reasoning. In contrast withindividual interviews, the facilitator addresses a number of issues (foci) for discussion andassures that the discussion remains on the subject of interest. Beyond that, interference withthe discussion is kept to a minimum, which aims to create a communication situation whichbears close resemblance to ‘naturally occurring interaction’ [27]. In fact, group participantsoften ‘forget’ the presence of the facilitator and begin discussing between themselves. Inaddition, a guided discussion among people who share a central part of their experiences(e.g., suffering from mental illness) encourages participants to articulate grievances andcriticisms. Consequently, focus groups can help avoid social desirability bias which canlimit the validity of results in face-to-face interview situations [21]. The group dynamicsfurther stimulate thinking, provide a wider range of contributions, and yield information thatmay be missed or withheld in an individual interview or questionnaire. Therefore, in-depthinformation from focus groups is one important basis for targeting anti-stigma programming.
When to use focus groups?
Service users, families, mental health professionals, media representatives, health politiciansand other groups all have different expectations regarding the outcome of anti-stigma efforts.The process of deﬁning target groups and developing effective interventions require anin-depth understanding of these different perspectives. Focus groups can be used at differentstages in programme development to:
rUnderstand how stigma and discrimination affect the lives of people with mental illnessand their families, and what they feel needs to be done to reduce the burden of stigma intheir daily lives. As participants share a similar living situation, focus groups providea safe environment that facilitates expressions on difﬁcult or hurtful subjects such asstigma. Discussions among like-minded individuals can also activate stigma-copingstrategies and help create social network ties through which participants may supporteach other beyond the focus group session.
rGenerate ideas and concepts to be used as input for programme planning. With theiropen atmosphere, focus groups are well suited to creating ideas. Based on these ideas,basic concepts for the anti-stigma programme can be developed.
rCreate anti-stigma messages including what information the programme will provideon mental health problems, which myths should be dispelled, and how the programmewill position the topic. Focus groups can be helpful in developing messages and testingthem with different target groups.

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 99
rMonitor the programme. Focus groups can be particularly useful for understanding
the needs of project teams. Possible needs arising in the course of the programmeinclude a need for training, consultation, additional staff, special expertise and otherresources.
Conducting focus groups
Successful focus group meetings require careful planning and preparation. You shouldconsider the following steps.
Step 1: Deﬁne the problem and formulate the main question
It is important to be clear about the concepts or issues that you want to investigate. A goodquestion to start an anti-stigma needs assessment is ‘When and where do people with mentalillness experience stigma that is a consequence of the illness?’ Having a clear understandingof the underlying concepts such as stigma, discrimination, exclusion, disadvantage or anti-cipated stigmatisation is particularly important as you will use these terms to pose questionsto focus groups’ participants and to generate discussion.
Step 2: Identify eligible focus group participants
A thorough needs assessment will capture the views of different groups, such as serviceusers, men or women with a mental illness, family members, health care professionals,clergy, journalists or ﬁlm-makers. Plan separate sessions for each group. Participants whoshare similar key characteristics will more easily identify with each others’ experiences.This will help participants feel more comfortable in the group and facilitate discussion. Thegoal is to create homogeneous groups of participants with respect to the key characteristicsyou have identiﬁed.
The number of focus groups required depends on your purpose. When exploring a broad
and complex topic such as experiences with stigma, you may want to run several groups,continuing until you cease getting new information (termed ‘saturation’). This usuallyoccurs within 4–6 groups. When addressing a more speciﬁc question, such as how individ-uals cope with stigma, you may need fewer sessions until you reach the saturation point. Foran even more speciﬁc and concrete purpose, such as testing audience reactions to a sloganor identifying needs for support in an action team, a single session with each target groupmay be all that is required.
Step 3: Developing discussion questions and probes
Identify the main issues to be discussed and formulate open-ended questions for eachissue. Each open-ended question should have a series of sub-questions and probes to as-sist the facilitator in generating discussion and eliciting a broad range of responses. Themain questions, sub-questions and probes form the discussion guide. This is an impor-tant tool for the facilitator to orient the group discussion and manage the time. An ex-ample of a discussion guide for enquiring subjective perspectives of stigma is given inFigure 6.3.
An in-depth exploration of a few concepts is preferable to brief exploration of a larger
number of issues. Therefore, the number of issues to be addressed in a focus group shouldbe limited to no more than three or four.
Questions do not need to be followed in strict sequence and probes should only be used
if the group does not react to an issue or offers little information. Otherwise, the goal isto use the questions to initiate a natural and free-ﬂowing conversation among the groupmembers. It is important to be as non-directive as possible to encourage a broad range ofcontributions.

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100 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
TOPIC 1: STIGMATISATION EXPERIENCES
Opening question:
What has changed for you after you first developed schizophrenia? Tell me concrete incidences and stories that
you experienced! [if necessary, probe: work, family, friends, education, everyday life]
Further questions (alternative):
Were there situations in which you felt excluded or misunderstood? [if necessary, probe: when? where? can you
describe other situations than you have already described?]
Did you tell other people that you had schizophrenia? [if necessary, probe: whom? when? why? why not?]
How did people around you react when they found out you had schizophrenia? [if necessary, probe: withdrawal,
interest, gossip, support?]
TOPIC 2: SUGGESTIONS FOR ANTI-STIGMA INTERVENTIONS
Questions (alternative):
What should be done about negative stereotypes/discrimination because of schizophrenia?
How would you like people to react to the fact that you have schizophrenia?
How, do you think, could these situations (described earlier) be avoided/improved?
What kind of information would be important?
Who/which groups in particular should be addressed?
[probe for concrete ideas when suggestions are given (e.g. storyline of a film, contents of a newspaper article,
strategies for political lobbying, etc.)]
Figure 6.3 Focus group guidelines for obtaining subjective perspectives of stigma experienced by
people with schizophrenia
Step 4: Select and train a facilitator and co-facilitator
The facilitator is the main data collection tool. It is important to make a careful choice based
on the purpose of the project, the characteristics of the focus group participants, and the type
of facilitator that would best ﬁt with the group to obtain useful data. A good focus group
facilitator will create an open and tolerant atmosphere in which each participant feels free to
offer opinions. They will have worked with groups in the past and have basic interviewing
skills (attentiveness, preparation, ability with the skilful phrasing of questions, and genuine
interest).
It is advisable to have a co-facilitator whose primary responsibilities are careful note-
taking and helping the facilitator to generate discussion. Notes are the basis of the analysis
so careful note-taking is crucial to the success of the focus group. It is best if all groups are
managed by the same team of facilitators. This will improve comparability of results across
groups. If time constraints require several focus groups to be carried on simultaneously,
careful training of facilitators should aim for a relatively uniform moderating style.
Step 5: Establishing the groups
Send personal or written invitations at least two weeks in advance of your focus group
session and conﬁrm attendance. In your letter of invitation state the purpose of the group,
the nature and the beneﬁts of the participation, how the information will be used, and how
individuals’ privacy and conﬁdentiality will be protected.

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 101
Different recruitment strategies may be necessary for different groups. People with seri-
ous mental illness and their relatives may be recruited though mental health programmes,advocacy organisations, or local mental health providers. Always invite more people thanrequired to allow for drop-outs. Follow-up contact with participants, through either mailreminders or telephone calls, will help to reduce drop-outs. Providing support for transporta-tion costs and parking may increase your turn-out. Also, depending on the local context, itmay be appropriate to offer small ﬁnancial incentives for participants. In this case, additionalfunds have to be allocated for this in the overall programme budget.
Time the groups carefully so that they do not compete with other important local events.
Arrange the focus group sessions to take place in a comfortable and easily accessibleenvironment. Create a relaxed atmosphere for the discussion through informal seating, andby providing beverages and light snacks. Whenever possible, hold groups with service usersoutside of the hospital or mental health programme.
Step 6: Running the focus group session(s)
Before participants arrive, set up and test any technical equipment that you plan to use,such as a tape recorder or video camera. Start the session with an introduction by thefacilitator. Explain how members were selected, the purpose of the project, how the datawill be handled, and how results will be used. Obtain informed consent to record thesession.
Occasionally you will have more people in attendance than you anticipated. If you have
too many people to run an effective group, split the group and have the co-facilitator leadthe second group. If your attendance is low, you will have to reconsider your recruitmentstrategy. Too few group participants may render the data incomplete and incomparable withother groups.
Begin the discussion with a general question and ask all participants to respond. A
question about some aspect of their experience will break the ice and create commonalitiesbetween group members. Then follow the discussion guideline you have prepared, usingprobes to generate more detail or to re-focus the discussion if it wanders off track. Whenthe discussion is complete, thank the participants and solicit their advice on how you couldimprove future sessions.
Problems often arise in the course of moderating focus groups. Some of the most fre-
quently experienced problems are as follows.
rThe presence of a dominant group member. While they may provide a great deal of use-ful information, they may discourage other participants from entering the discussion,force agreement with their own views, or even attempt to take over the facilitator’srole. If given too much room for expression, they are a major source of bias in focusgroup research. To defuse the situation, be appreciative of the dominant individual’sknowledge, but explain that the opinions of others are equally important. You mayneed to tell them ﬁrmly, but politely, to wait their turn to speak. Establishing clearground rules for communication at the outset may help to prevent this problem.
rCensoring and conformity are common processes in group interaction. In focus groups,participants may withhold comments through lack of trust, or tailor statements inaccordance with their perceived expectations of the facilitator or other members of thegroup. At the outset, asking participants to describe concrete experiences, rather thanhaving them provide opinions, can reduce this propensity.

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rFocus group discussions may become heated as people begin to express different views.
Two participants may begin to argue and exclude everyone else from the discussion.Working in smaller groups can overcome this problem. Assign the two people arguingto one group in order to encourage their cooperation. By making cooperation an explicitgoal of the exercise, they will be faced with the possibility of group sanctions if theyare unable to work together.
rTopics you wish to address may be too abstract for participants. This happens frequentlywhen participants are asked to envision solutions. They may not see themselves in aposition to implement change, or such solutions may be too far away from their every-day problems to be readily grasped. This situation may be alleviated by introducinggames or stories. For example, you may ask the group to imagine that they are journal-ists commissioned to write an article on schizophrenia for a magazine, or consultantsto a movie that features a character who has schizophrenia.
rParticipants may feel embarrassed to share experiences. One option for overcomingthis problem is to ask them to write down their views. A second option is to splitthe focus group into smaller subgroups, asking each to prepare a brief report. Thesestrategies will assist participants in becoming clear about what they have to say andallow them to be selective in preparing and making their statements. An expansionof this method is to have people write experiences down anonymously on identicalsheets of paper, put them in the middle of the table, shufﬂe them and let people drawstatements to be read out. Unpleasant experiences are mentioned but without personalidentiﬁers.
rWith quieter participants, direct questions can be used to probe whether their silencemeans agreement, disagreement or unwillingness to respond, or whether the participanthas nothing more to say.
Focus groups are intellectually and emotionally taxing for the facilitators. No more than
three focus group sessions should be scheduled per week to allow facilitators sufﬁcienttime to debrief, review notes, identify themes to take up in the next sessions, look forimprovements, and replenish energy levels.
Analysing focus group data
Material from focus groups can be used in a variety of ways. Hence there are different levelsof analysis, ranging from providing an overview of a broad issue, to the detailed analysisof one particular aspect of experience. Ensure that the data analysis strategy answers thequestions posed by your needs assessment project. A summary of focus group applicationsis provided in Table 6.2.
In-depth analysis In-depth analyses are ideal where there are a small number of groups,
the focus is relatively narrow, and the research question is speciﬁc. An example of a researchquestion that is amenable to this analysis is: How do families of people with schizophre-
nia cope with the fact that friends and relatives abandon them after the illness begins? A
thorough analysis would use a full set of verbatim transcripts that have been prepared fromtapes. The process is inductive. Categories are formed from themes that emerge when read-ing the text. Coding uses a cut and paste procedure. The coding system evolves throughoutthe course of analysis.
It is important to develop a coding guide that clearly deﬁnes the codes to be used and
provides criteria for what kind of information is to be coded under which heading. To

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 103
Table 6.2 Summary of focus group applications
Concrete purpose, e.g.,
developing messages,testing questionnaireitems, identifying needsfor support in projectteamsIn-depth analysis of a
speciﬁc research Explorative, broader
Purpose question sampling population
Possible questions How do university
students with recentonset of schizophreniacope with stigma?How is stigma
experienced from thesubjectiveperspective of peoplewith schizophrenia?What are the training
needs of people withschizophrenia inworking with the media?
Number of focus
groups2–4 4–6 1–4
Data analysis In-depth analysis: Use
of a full set oftranscriptsInductive coding:Generating categories(coping styles) fromthe respondents’ ownwordsExploratory analysis:
Coding of a set ofnotesSearch for patterns ofexperiencesUse of transcriptspossible forillustrative purposesHigh-level analysis:
Select relevantinformation from thenotes or materialsproduced in the focusgroup (e.g., ﬂipcharts,drawings, etc.)
Duration 6–10 months 4–6 months 1–3 months
Cost high medium low
ensure that codes are reliably identiﬁed, coding should be done by two researchers working
independently. Resulting codes are discussed and discrepancies identiﬁed and resolved.The ﬁnal step is the interpretation of patterns in the material. For example, one may lookfor types of people reacting to stigmatisation in a particular manner, or develop a typologyof coping styles that could serve as the basis for a stigma-coping training programmefor family members. Analysis can be further facilitated by breaking it down according to‘sub-questions’ to avoid including too many topics. Here, the text should be analysed forone aspect at a time. Also, several computer software packages for qualitative analysis areavailable and facilitate coding by allowing simultaneous access to the coding system andthe coded text.
Exploratory analysis Exploratory analysis typically covers a broad range of issues derived
from a larger number of groups. For example, one may be interested in identifying stigmaexperiences from service users, family members, and mental health professionals. Givensuch a broad research objective, verbatim transcripts are not required. An analysis of thenotes taken by the co-facilitators during sessions is sufﬁcient. Notes are scanned for generalthemes or categories of experience. The categories that are produced in this way can thenbe illustrated with quotes transcribed from the tapes.
High-level analysis A high level analysis may be conducted to generate ideas, or to de-
velop or test questionnaire items or media materials. In such cases, transcription is rarelyrequired. Instead, a more straightforward summary of the contents can be developed byselecting relevant information from the session notes. In addition, materials produced dur-ing the focus group session such as drawings, ﬂipchart sheets summarizing the results ofbrainstorming sessions, or associative comments on a proposed slogan written down by

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each participant can be used. If the material provides information on a variety of topics,
it is advisable to break down the analysis into manageable subsets. Topics relevant foranalysis usually correspond with issues listed in the interview guide and the focus groupobjectives.
Problems in analysing focus group data
Focus group data are rich, complex, and the product of group dynamics. Therefore, focus
groups do not lend themselves to understanding individual views or making comparisonsbetween participants. While the group dynamics occurring in a guided, but relatively open,discussion are an important argument for the use of focus groups for speciﬁc purposes,they complicate an analysis of data at the level of the person. If the goal is to understanda problem at the individual level, then an interview, rather than a focus group, is the betterapproach.
One challenge in the in-depth analysis of focus group data is that several participants may
speak at the same time, making it difﬁcult to distinguish individual statements on the tapeor identify individual perspectives. A skilled facilitator may prevent this by asking peopleto repeat themselves or by stopping the discussion when participants speak simultaneously.
Recommendations for further reading
A very practical summary on focus groups is given in [28]. This handy paperback givesan overview of the uses of focus groups, research designs, conducting focus groups andanalysing focus group data. It also compares focus groups with other methods such asinterviews or participant observation. For a comprehensive insight, the Focus Group Kit
[29] provides you with plenty of resources and practical examples on how to run successfulfocus groups, from the initial planning stages to asking questions, to facilitating, to the ﬁnalanalysis and reporting of your project. [30] represents another useful handbook you maywish to consult.
Evaluating the context for designing and implementing effective
anti-stigma interventions
No matter how speciﬁc or small-scale the programme you have in mind may be, all your ac-
tivities against stigma are always embedded in a wider social, cultural and political context.It is therefore necessary to understand the environment in which anti-stigma activities takeplace. Knowledge of the wider environment is important for two reasons. First, it providespotential resources for anti-stigma action, such as a particular journalist who stands out
in the overall negative reporting on the mental health issues and hence could become animportant ally in sensitizing media representatives to the importance of responsible report-ing. Likewise, a local health politician who successfully fought for the establishment ofa housing project for people with chronic mental illness against strong resistance in theneighbourhood may be interested in counteracting discrimination on a wider scale.
Second, however, the wider context of anti-stigma activities also presents obstacles and
constraints for successful action. For example, it is likely to be difﬁcult to obtain funding for
an issue that might not be at the top of local politicians’ or potential sponsors’ agendas. Also,stereotypical attitudes among the general public or key opinion leaders may mask their viewfor there actually being stigma in place, as discriminatory action may be seen as a ‘normal’reaction to deviant, incomprehensible behaviour or to a perceived danger represented bypeople with mental illness. Yet, in the context of anti-stigma programmes, these obstaclesmay lead the way to deﬁning targets for anti-stigma action. As discussed earlier, these mayindicate a need, i.e. the necessity to ﬁll the gap between the current situation and a future

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 105Table 6.3 Overview of needs assessment methods
Assessment
method Advantages Disadvantages TipsPossible use in the context of
anti-stigma programmes
Interviews –Record multiple perspectives
–Minimal cost
–Allows for clariﬁcation–Requires much
time
–Difﬁcult to
quantify–Identify groups to interview
–Use active listening
–Prepare speciﬁc questions and
focus points–Interview key people in the
community (e.g., schoolheadmaster, head of the police,health politicians)
–Obtain expert perspective on
mental health literacy
Focus
groups–Allows brainstorming
–Discussion among participants –
minimal interference from theresearcher
–Allow participants to qualify their
responses
–Synergetic effect of the group setting
–Encourage the articulation of grievances
by reducing social desirability–Dominant
personalities
–Time constraints
–Difﬁcult to
analyse
–Difﬁcult to
capture variousviewpoints–Conduct gr oups with all
relevant stakeholders
–Make ﬁeld notes and tape the
session
–Ask participants to think about
key issues beforehand
–Set up ground rules–Exploring stigma experiences of
people with mental illness andtheir families
–Generating ideas for anti-stigma
strategies
–Developing anti-stigma messages
–Gathering expertise on funding
channels
Surveys –Allow to gather representative data
–Allow participants time to think
–Easiest to analyse/quantify
–Little time required to administer
–Anonymity–Development time
–High cost
–Low returns
–Data gathering
through the lensof the researcher
–Low return rate–Keep questions basic and clear
–If possible, use uniform
response format
–Pilot questionnaire ﬁrst
–Maximize return: follow-up calls
–Assure participants’
conﬁdentiality–Studying public opinion on
mental illness
–Ascertaining views of target
groups (e.g., teachers) aboutspeciﬁc issues (e.g., mentalhealth promotion at school)
Analysis
of existingdata–Easy to analyse/quantify
–Minimal cost
–Provides evidence of ongoing trends
and problems–May be outdated
or incomplete
–Data could have
been selectivelyedited
–May not be
helpful inidentifying causeof problem–Determine ethical and legal
constraints of data use
–Formulate questions to be
answered by reviewingdocuments
–Consider search time vs. survey
time
–Check validity: interview
authors–Policy analysis (health and social
policy, insurance practices) toidentify discrimination againstpeople with mental illness
–Review human rights legislation
to see whether it applies topeople with mental illness
Adapted from NOAA Coastal Services Center – www.csc.noaa.gov/cms/cls/needs assessment html

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106 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
desirable state. Analysing the environment in which anti-stigma activities take place is thus
a central aspect of successful needs and capacity assessment strategy.
As may be evident from examples for resources and obstacles for action against stigma
given above, there are three main avenues to pursue in obtaining context information fordeveloping effective anti-stigma interventions:
1) understanding attitudes of the general public and important stakeholders;
2) analysing media images of mental illness;3) studying policies and legal regulations to detect where structural discrimination against
people with mental illness is in place.
For each of these three strategies, planners will be acquainted with some central steps and
tasks to provide a basic understanding of the issues involved.
1. Assessing population and stakeholder attitudes: surveys
Deﬁnition and purpose
A survey is deﬁned as
a structured process for collecting primarily quantitative data directly from individuals
by asking questions. It can show the distribution of certain characteristics within apopulation, usually by surveying only a small proportion of that population. [31]
Surveys are used when needs assessors require generalizable information about particular
topics. This means they aim to make inferences about an entire population (e.g., all mentalhealth professionals, the general public in a country, all journalists) on the basis of theirdata. This requires adopting an appropriate sampling strategy, i.e. a procedure to select agroup of people for the survey that adequately represents the population one intends tostudy. Further, it is important that the topics addressed assume approximately the samemeaning for everybody questioned, and that questions can be understood identically bypersons coming from different contexts or social groups [21].
Not only do surveys (1) provide context information for programme activities, they are
also used to (2) broaden planners’ understanding of ﬁrst-level needs by quantifying theirscope. Once the nature of problems as well as priorities for action have been understoodthrough qualitative inquiry, knowing its frequency and distribution in potential target groupsis essential to effectively focus an anti-stigma programme [32]. Finally, needs assessmentsurveys can (3) provide baseline information against which the success of programmeactivities can be judged. Next, the steps and tasks in conducting a survey will be outlined.
Step 1: Deciding on survey objectives
Starting out with a survey, you ﬁrst need to decide on the objectives of the survey. Thisimplies determining exactly what you want to learn from the individuals you plan to survey.Having a clear idea before you begin will guide you through the whole survey process andcan save valuable time for both you and your participants [15].
Ideally, this is done by formulating a research question, i.e. phrasing the topic of interest
in one concrete question. For anti-stigma programmes, this question may read as follows:
1) What do people know about mental health problems? and/or
2) Which treatment methods do they perceive as helpful? and/or

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 107
3) What are the common stereotypes held about people with mental illness? and/or
4) How would people react towards someone with mental illness in important social
situations?
These questions target different levels of public or target group opinion. Questions 1 and 2
would guide the design of a survey aimed at testing knowledge about mental health problems
and available help-seeking options, which is also described as mental health literacy [33].
Identifying gaps in mental health literacy is particularly important in assessing needs forprogrammes aiming at improving prevention and fostering adequate help-seeking. Question3 taps public attitudes about people with mental illness, and question 4 gauges hypothetical
behaviour towards them. Among these levels, data on the scope, nature and distribution of
stigmatizing behaviours should be the main aim of the survey as the latter most stronglyaffect the concrete burden of stigma in service users’ and families’ lives [32].
Not only does the survey objective determine what kind of information the assessment will
provide, but it also needs to guide the whole process of survey development, implementationand analysis. For example, a survey aiming at measuring mental health literacy of thegeneral public will have to formulate questions in such a way that they are relevant and
understandable for lay persons rather than testing specialist medical knowledge. When
attitudes of mental health professionals are being surveyed, on the other hand, questionsused in attitude surveys among the general public may be useful to make comparisons.However, professionals’ contact with people who have a mental illness mainly takes placein the context of therapeutic relationships, when those suffering from mental illness aretheir patients or clients. Therefore, attitude questions should speciﬁcally refer to providingcare for mental illness, e.g., by asking about treatment philosophies.
Step 2: Developing a budget
Before beginning to develop a survey, planners need to be aware of how much money theycan spend. Developing a budget is the second step in conducting an assessment. Togetherwith the survey objective, the budget will guide the selection of survey methods and willfacilitate decision-making on central planning questions such as deciding whom to hire toassist with the survey, how many people to include in the study, and what kind of and howmuch data analysis to do.
Step 3: Questionnaire design
Next, the survey objectives have to be operationalized, i.e. needs assessors must develop
questions that adequately measure the context variables they decided to survey.
When it comes to assessing programmatic needs for anti-stigma activities, there is plenty
of experience with surveys from the World Psychiatric Association’s Global Programme toFight Stigma and Discrimination because of Schizophrenia. Several assessment tools havebeen developed in the context of the programme, for example social distance questions tomeasure the general public’s behavioural intentions towards people with schizophrenia orsurveys to study the attitudes of journalists. Many useful programme materials are availableon the programme’s website at www.openthedoors.com. On the site, you can also ﬁndcontact details of colleagues in different countries who will be happy to share their expertiseand experiences. So before you set out to develop your own survey questions, it is alwaysa good idea to see what assessment tools are already available. Apart from saving valuabletime and resources, drawing on existing materials also offers the advantage that these tools

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108 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
have already been used in the ﬁeld and may have been tested for their reliability and validity.
So using them will also increase the quality of the data you obtain from your assessments.
In case you have speciﬁc assessment objectives that have not been studied elsewhere, the
following aspects have to be borne in mind in developing questions:
rthe kind of survey you are planning (e.g., mail survey, telephone survey, Internet survey,face-to-face survey);
rthe population you intend to survey (e.g., the general public, journalists, mental healthprofessionals);
rthe kind of data analysis you plan to carry out.
For example, a mail survey should include primarily ‘closed’ questions, which give the re-
spondent a choice of answers to select. Examples include responding yes or no, indicatinghow frequently a certain situation applies, or rank-ordering several options [15]. Throughthis, respondents are required to express their opinion through a scale point and thus pro-duce quantitative information. Quantitative scales available to record responses include theﬁve-step Likert scale (e.g., ranging from ‘strongly agree’ to ‘strongly disagree’) or scalesusing semantic differentials (e.g., between ‘hurts’ and ‘doesn’t hurt’), usually giving sevenintervals allowing respondents to quantify their position between the extreme poles [21]. Agood summary of different scales is provided in [34].
‘Open-ended’ questions allow participants to generate answers themselves. In surveys,
these should be used as little as possible, as they (1) do not provide quantiﬁable informationand thus (2) require considerable effort in data analysis (developing a coding scheme, etc.).In mail surveys especially, the number of open-ended questions should be limited since hererespondents’ motivation will be lower than in a face-to-face or telephone interview situation.Hence a mailed survey should be as simple and convenient as possible. This means that ques-tions and response options must be clear and short, and the questionnaire should have an at-tractive layout which guides respondents through the questions in a ‘look-and-feel’ fashion.
Put yourself in your respondents’ shoes also in deciding on the order of questions .T o
keep them from fatigue and frustration in ﬁlling in the questionnaire, start with questionsthat build interest in your survey and are relatively easy to answer. The following questionsshould be ordered in a manner that will seem logical to respondents [35]. Place difﬁcult orpotentially threatening questions in the middle of the questionnaire, as you want respondentsto answer these questions after they have warmed up, but before they get tired [15]. Finally,place demographic questions (e.g., about respondents’ age, income and family status) atthe end, as these may lead some respondents to interrupt answering the survey. Also,demographic questions are answered quickly which makes them convenient at the endwhen respondents may already be tired.
Once an initial set of questions has been developed, they must be tested and revised.
The following steps are recommended for testing questions:
rSeek to establish content validity by sharing them with colleagues who have experiencewith or expertise in the subject of the survey.
rSolicit the opinions of people who will analyse the data.
rAsk them to critique the questions and suggest ways to improve the wording.
rAsk them to tell you what they think the questions mean.

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 109
These people should be informed about the scope and purpose of your assessment and be
asked to use a consistent format in providing written feedback. Taking time to revise yourquestions is the best way to diminish measurement error in responses, thereby increasingreliability and validity of your survey [15].
Step 4: Piloting the questionnaire
Before entering the ﬁeld with your survey, you should allow time to conduct a pilot test .
This investment should result in an effective format and response rate. For larger researchprojects, several steps are suggested for pilot testing, including peer critique of a draftquestionnaire, revision and testing with friends and colleagues, pilot testing with a smallsample of respondents, written comments from interviewers and respondents, and pilottesting again [15]. However, extensive pilot testing like this is likely to exceed the resourcesof many anti-stigma programmes. After all, the assessment of programmatic needs is onlythe ﬁrst (though crucial) step of putting activities into place – so it must not absorb thelion’s share of project funds. Piloting a survey should nevertheless not be bypassed. Aneconomical way to carry out a pilot test is to ﬁnd a group of people to practise ﬁlling in thequestionnaire. For this, select a small sample of people ( n≤20) who are similar to those
who will participate in the survey, and then administer the questionnaire to them under‘real-life conditions’. Ask them to identify confusing questions, state the reasoning theyused to answer the questionnaire and to suggest improvements for question wording andresponse options on an extra page at the end of the questionnaire.
Step 5: Conducting the assessment
Administering a survey requires considerable expertise and resources, for example access toaddress databases of the target groups to be questioned, computer algorithms for selectinga sample, specially trained staff to conduct the interviews, telecommunication facilities fortelephone or Internet surveys, and administrative support in coordinating the ﬁeldwork.
Therefore, it may be worth considering contracting an external survey ﬁrm to conduct the
survey for you. These have trained interview crews and survey staff, plenty of experiencewith ﬁeldwork, and have the relevant networks and resources to organise a smooth andprofessional survey. Within the WPA Global Programme to Fight Stigma and Discriminationbecause of Schizophrenia, needs assessment surveys in many countries have been conductedin cooperation with reputable research ﬁrms. Experiences and lessons learnt are summarisedin the programme’s training manual [32].
Step 6: Analysing survey data
Once you have gathered your data, they will have to be summarized in a suitable way torender them useful for the programme planners. Data analysis may be one of the last stepsin your survey, but it is advisable to plan for it from the very beginning. In this way, youcan ensure that the right data are collected and that you will have them available in theform that is required for the analysis [32]. Depending on the purpose of a survey, varyingdegrees of complexity are possible in analysing the data. In the context of a needs assessment,sophisticated statistical tests are typically not necessary. Rather, simple descriptive statisticssuch as frequency distributions, the range of responses and the most appropriate measure ofcentral tendency (mean, median or mode) are usually sufﬁcient for analysing programmaticneeds [15]. For determining the direction of anti-stigma activities, your results should showlevels of stigmatising behaviours and practices in the sample as a whole and in sub-groupsdeﬁned on the basis of relevant social and demographic indicators [32].

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110 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
Recommendations for further reading
There is ample literature on the design and implementation of surveys. Detailed backgroundinformation on planning considerations as well as useful knowledge on how to put a surveyinto practice are provided in [31, 35–37]. [15] and [32] give excellent overviews of theconcrete steps in conducting a survey in the context of a local needs assessment.
2. Assessing public images of mental illness – media analyses
The media play a decisive role in disseminating public images of mental illness. Onlya minority of people have direct access to ﬁrst-hand information on mental illness. Pub-lic perceptions about mental health issues are therefore largely informed by images andinformation circulated by the mass media.
Media representations of mental illness have been shown to reﬂect common stereotypes
present in public opinion: reporting focuses on severe mental disorders, most media imagesemphasize bizarre behaviour and create the impression that there is a strong associationbetween mental illness and violence [19, 38, 39]. This stereotype of unpredictability andviolence has been found to be most strongly associated with people rejecting social rela-tionships with people with mental illness and engaging in discriminatory behaviours [40].Accordingly, there is good reason to include an analysis of media representations of mentalillness in the needs assessment for effective anti-stigma strategies.
Here, it is of particular importance to consider how the media in your local context deal
with news and stories about mental health and illness. For, at the local scale, you stand thebest chance to actually affect media reporting. When analysing the content of your localnewspaper, for instance, you can identify which journalists specialize on topics related tomental health and try to involve them with your local action group. You can further obtain aninsight into what makes mental illness a ‘newsworthy event’ and tailor you public relationsstrategy accordingly. Also, focussing your project on a limited number of media productswill allow you to deﬁne clear, measurable goals for your programme. For example, youmay seek to increase the proportion of positive reports on mental health issues in the localnewspaper by 5%.
The ﬁrst step in analysing media images is to decide on the type of media (newspapers,
magazines, radio broadcasts, television programmes) you are going to study. Criteria onwhich you can base your decision include circulation data (i.e. how many people a particularmedium reaches), accessibility of information, and the effort required to analyse mediacontent. Several methods are available for media analysis.
Content analysis is the technique most commonly used in analysing media reporting. It is
a systematic method used to turn items (mainly texts) into content categories. It starts withdeveloping explicit rules of coding and enables large quantities of data to be categorized withrelative ease. It focuses on quantitative techniques such as frequency counts, concordancesand collocation measurements and a number of clustering techniques for codes derived fromtextual, audio or visual data, sometimes also referred to as ‘text mining’ or ‘data mining’.In addition, content can be analysed in an interpretive fashion, e.g., by describing commonthemes in the reporting about mental health issues. This is referred to as ‘qualitative contentanalysis’.
Frame analysis looks for key themes within a text and shows how cultural themes shape
our understanding of events. For example, you could develop a list of common stereotypesof mental illness such as dangerousness, unpredictability, incompetence or untreatability,and analyse in which ways these are reinforced in news items, TV programmes or feature

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 111
ﬁlms. Frame analysis of media content can also show how aspects of the language and
structure of news items emphasize certain aspects and omit others, and thus contribute toour understanding of processes of stereotyping.
Discourse analysis examines how the social world is constituted through discourse
between social actors. Used in the context of media analysis on mental illness, it canidentify
1) the perspectives of actors present in the media, such as health professionals, politicians,
user and family organizations, or the police;
2) the views on mental health and illness they are promoting;3) to what extent their perspective is portrayed in the media; and4) to what extent these views contribute to stigma or to ﬁghting it.
Assume that your analysis of ﬁrst-level needs, i.e. service user and family views, has
revealed that people with mental illness face disadvantages due to a lack of adequate infor-mation on mental illness among the public. In this case, your needs analysis could use thismethod and focus on the extent to which and the contexts in which mental health profes-sionals provide information that dispels myths and stereotypes, and to which service usersand family members are represented in the media.
In practical terms, conducting a professional media analysis can be very time-consuming
and costly. There are different options which can make media analysis feasible as a needsassessment strategy, even though you may be on a tight budget:
1.Subscribe to a media service for a certain period. These services have access to
electronic databases on all media content and can carry out structured searches foryou. You have to provide them with a list of keywords, and they select the relevantmedia items and send results to you in the shape of a newsletter.
2.Use electronic databases or archives of media content . These are commonly available
online on the newspapers’ or TV programmes’ websites and can be searched for asmall fee. Some daily papers produce content archives on CD-ROMs which can beaccessed at public or university libraries.
3.Co-operate with the Department of Media Science and Communication at a local
university or college. They often routinely carry out media analyses and may have
both relevant databases and speciﬁc software that searches, organises and annotatestextual or multimedia data available, and may allow you to use it. Another option islocating media science students who may be interested to do a thesis project on mentalhealth reporting and could conduct the assessment for you within the framework oftheir research.
4.Find regular readers of particular papers or magazines among your local action
committee . Ask them to identify relevant articles over a period of one month and
collect them in a media folder. You could use a committee meeting to go throughthese materials and locate (1) general themes and (2) occasions on which mentalhealth becomes relevant as a news item. Decide on the necessary steps to changereporting patterns based on this information.

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112 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
Recommendations for further reading
If you would like to learn more about media analysis, Klaus Krippendorff’s classic textbookon content analysis gives a comprehensive overview and describes different strategies ofanalysis [41]. A concise introduction into the concept of content analysis and its uses isprovided in [42]. Both [43] and [44] provide readers with a clearly written, user-friendly,hands-on guide to media research techniques.
3. Analysing documents and existing information: health-related data, policies
and legal regulations
Beyond doubt, needs assessments require the collection of original data. However, it would
be a serious oversight if existing sources of data were not considered. They, too, can producevaluable facts and ﬁgures about need. For instance, other researchers may have alreadycollected data on particular areas of need. Examples of useful secondary information includenational survey data on public images of mental illness or research reports on media content.
Additional background and supplementary information can also be obtained from
analysing raw data and published data summaries on health and social indicators rel-
evant to understanding the effects of stigma on a structural level. Here, statistics on healthcare funding in the different medical specialties, employment rates of people with mentalillness, physical health problems experienced by mentally ill people as well as epidemio-logical data on the prevalence of untreated mental illness among the population can supplyimportant information in deciding on the priorities of anti-stigma action. Sources of thesedata include libraries, reports of experts and authorities, and census data as well as agencyand organisational reports.
Existing information can be obtained from local, national and international sources.
Examples of data sources at the local level include those maintained by the statistics sectionof a local health department, economic and human resources information available froma human services ofﬁce, and regional data collected by a health planning agency. Highlyregarded international sources include those provided by the World Health Organization,such as World Health Statistics, Weekly Epidemiological Record [15] and the World Mental
Health Survey (www.hcp.med.harvard.edu/wmh/index.php). These sources provide health-
related statistical data.
Additionally, planners of anti-stigma programmes may be interested in understanding
where policies or legal regulations discriminate against people with mental illness. Struc-
tural discrimination chieﬂy comes into being through decision-making routines that maynot necessarily explicitly refer to people with mental illness, but put them at a disadvantage.For example, the National Monitoring Body for the Insurance Trade in Germany conﬁrmedthat it is common practice for insurance companies to classify people with mental illness aschronically ill, and thus as a high-risk group. As a consequence, treatment for mental illnessis generally excluded in travel health insurance packages. If one considers the economicsituation of people with mental illness, however, it is likely that the majority of them arenot actually in a position to afford holidays abroad. Thus considering people with mentalillness as a high-risk group does not have a rational basis when it comes to travel insurance[45]. Similarly, legal discrimination was detected in Austrian law. For example, legal textsstill use outdated, discriminating terminology such as ‘mentally abnormal’. In addition,the social and health insurance systems are described as drawing on a clear dichotomybetween health and illness, which does not adequately reﬂect the nature of mental healthproblems. Consequently, rehabilitation measures and complementary services for people

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STRATEGIES FOR ASSESSING NEED: APPROACHES AND METHODS 113
suffering from mental illness are frequently not offered or ﬁnanced by public insurance.
Further, Austrian civil and canon law contains rules that allow declaring a marriage invalidif one of the partners develops a mental illness [46].
Analysing laws and policies ﬁrst of all requires identifying the kinds of legal provisions
that may discriminate against people with mental illness, thereby limiting the scope of youranalysis to the relevant documents. This information can be obtained from the analysisof ﬁrst-level needs, i.e. the areas in which people with mental illness and their familiesexperience discrimination in their daily lives. Furthermore, needs assessors may wish toconsult with legal experts in identifying the pertinent laws to examine. The Austrian study,for example, combined these two strategies and decided to investigate the following laws aspotentially discriminating: the social security system, civil commitment, legal rules relatedto obtaining a driving licence, family and canon law, and inheritance regulations [46].
It may also be worthwhile for needs assessment groups to consider cooperating with
national or regional anti-discrimination bodies. These often employ legal experts who knowwhat type of laws and policies to scrutinize for discriminatory practices. Moreover, theymay be interested in conducting an enquiry into the legal situation of people with mentalillness and could thus be a competent partner in assessing anti-stigma needs.
Scanning the health statistics, legal regulations and policy documents for relevant existing
data pointing to mental-health-related stigma, then, helps to avoid investing resources in anassessment that does not actually produce novel insights. Conducting a survey, especially,requires a considerable budget. If one based decisions about programmatic needs regardingattitude change among the public on available survey data, these funds could be transferredto data collection on other areas of need on which no relevant data exist to date.
While drawing on existing data can save valuable time and resources in assessing need,
there is a note of caution: sources providing such information should only be used aftercarefully analysing their quality. Questions needs assessors should raise include how thedata have been obtained, when they have been collected and whether the information isin-depth. When consulting health and social indicators, they can only interpret the dataappropriately if they understand what has been included or excluded from records, whysuch decisions were made, and how variables have been deﬁned [17].
In summary, in taking decisions about need on the basis of existing data, make sure that the
data were obtained recently, addressed the same survey population, and provide informationin a format that is conducive to taking decisions about needs. Further, bear in mind that datafrom documents and records represent the current status of a situation. In order to makeinferences about needs and capacities, discrepancies have to be determined in comparisonwith standards [17]. Where standards do not exist, the current status must be related toa desirable future state that can be expressed as the target your anti-stigma programmeseeks to achieve. One such goal could be the inclusion of the mentally ill in national anti-discrimination legislation when needs analysis has identiﬁed that these laws currently donot take account of discrimination on the grounds of a person’s mental health [47].
Recommendations for further reading
[47] presents a detailed study of social attitudes and responses to people with mental illnessin the USA and the UK, contrasting anti-discrimination legislation in the two countries. Forthose with an interest in the theoretical background and methodology of policy analysis,[48] will make for an interesting read. From the perspective of political science, this bookprovides practical advice about how to actually conduct policy analysis and demonstrates

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114 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
the use of advanced analytic techniques. The use of existing data as a source of information
about needs is described in [15] and [17].
Translating needs assessment results into practice
Setting priorities on needs
At ﬁrst glance, it appears obvious that all needs assessment activities should be gearedtowards deﬁning priorities for action. However, many needs assessments do not actuallyinclude such a step – they stop at data analysis: [18] analysed 125 needs assessmentsreported after 1981 and found that fewer than half gave attention to priorities for action.
To counteract this apparent blind spot, the following section focuses specially on prioritysetting approaches.
Simple approaches
Where the situation concerning needs is not complex, simple decision-making procedurescan be used to set priorities. These include paired comparisons, rank ordering and zero-sum games [17]. Here, criteria for decision-making are not spelt out in any detail. Inaddition, these techniques are easy to use and understand, and allow programme developersto complete decision-making in rapid order. In the context of anti-stigma programmes,they can be useful in smaller-scale projects with a local or regional focus that largelyrely on their own funds or voluntary work. This being said, these locally based projectsare often particularly effective in improving the lives of people with mental illness. Theycan focus their activities on concrete problems in the local context, may be less removedfrom the programme’s target groups than larger-scale projects through community ties,and frequently organise a continuous ﬂow of activities, thus enhancing their impact andfostering programme sustainability. The success of programmes against stigma, then, doesnot only depend on their scale and the funds they have available, but just as crucially onthe commitment, creativity and social networks of programme activists. Therefore simplepriority setting is a feasible strategy for many anti-stigma programmes.
Multi-criteria approaches
Anti-stigma efforts aiming to affect change on a national or even international scale, how-ever, often depend on external support and require a large commitment of resources. Here,priorities may need to be defended to external constituencies such as political bodies orsponsors. With such a scenario, a multi-criteria approach to priority-setting will be a goodoption.
Here, two basic dimensions are considered in judging needs: importance andfeasibility
[49]. A set of criteria is deﬁned on each of these dimensions. Important criteria includethe number of individuals affected, the contribution to organisational goals, the need forimmediate action, and the magnitude of discrepancy between a need and the desired statusfor an area of concern. Availability of resources, the expected efﬁcacy on an intervention,and commitment to change on the part of relevant stakeholders are examples for feasibilitycriteria [17]. Needs are judged against these deﬁned criteria, and then criteria scores arecombined to a total priority score.
Advantages of this approach include that well-thought-out criteria are explicit and can
be weighted and that the technique allows taking account of interaction among criteria.Decisions on priorities can thus be made in a transparent and accountable fashion.

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Disaggregated prioritization
This approach places criteria in a rank order. Next, a need candidate is screened through
each criterion, starting with the highest-ranked one ﬁrst. This process is particularly usefulwhen programme developers have to deal with a complex set of needs and have drawn up aset of multiple criteria on which to base their decision-making. Ordered criteria, used oneat a time, allow keeping the focus of prioritizing on a single criterion, which may facilitateinsights that may have otherwise been clouded in the complexity of needs assessmentﬁndings. Ranking is a useful strategy whenever it is desirable to simplify the prioritizingprocess. This may be the case when multiple needs compete for limited resources or whendevelopers of anti-stigma programmes are under time pressure, for example leading up toa deadline for a funding application.
Risk assessment
Another way to view needs-based priorities is in terms of the risks associated with notattending to or resolving a need. This method should be contemplated in situations in whichnot meeting a need has a major impact. In fact, the cost of choosing to address one need atthe expense of another may outstrip the beneﬁt incurred by your entire programme directedat that need.
Consider the following situation. After local government has decided to curb health care
funds, the health board decides to outsource its housing projects for people with severemental illness to a private company from the beginning of the following year. The companywill continue to run them, but will increase the monthly fees charged to residents. You knowfrom your needs assessment that their average income is barely enough to get by, and only asmall share of residents can count on ﬁnancial help from family members. At the same time,you identiﬁed a need to improve the mental health literacy among the general populationas a large share of mental health problems remains untreated. Because of its scope, thelatter problem may be high on your agenda. The ﬁrst need, however, may, at worst, leaddozens of mentally ill people into homelessness, with serious consequences for their healthand life. Further, the risk will increase with the passage of time (greater time risk). Anurgent response is called for. Deciding not to act on it may also question the credibility ofyour public awareness campaign. You may be challenged for encouraging people to seektreatment for mental health problems, while the health system fails to sufﬁciently providefor those treated for severe psychiatric illnesses. Consequently, support and buy-in for yourprogramme may drop (internal moral risk). Some level of risk assessment should thereforebe carried out in deciding on priorities for anti-stigma interventions. A detailed discussionof different types of risks and ways to measure them is provided by [17].
Selecting solution strategies and developing an action plan
Priorities for action do not yet make an effective anti-stigma programme. Before being ableto embark on concrete projects, developers of programmes against stigma need to identifyappropriate solution strategies to resolve high-priority needs.
Reviewing the relevant literature to identify potential solution strategies and possible
exemplary sites can be a good starting point. Without doubt, the literature and the Web willoffer plenty of project descriptions which may be pertinent to addressing the problems youidentiﬁed. However, try to limit your search to interventions that have been evaluated andwhere there is evidence with respect to their effectiveness. This simultaneously introduces

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116 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
a quality criterion and reduces the amount of information you obtain to manageable dimen-
sions.
Locating experts and asking for their input regarding ways to resolve problems is another
worthwhile strategy in developing solutions. Not only can they share their experience withanti-stigma activities, but they can also point you to fruitful avenues to explore in existingsources. Cooperation with experts also facilitates benchmarking with other similar groupsand organisations that have handled anti-stigma needs. Contacting colleagues working toﬁght stigma in your country or region, you may be able to arrange site visits where you canobserve their projects in action and discuss the pros and cons of solution strategies withtheir protagonists.
An action plan for your programme determines the best solution strategies for the central
areas of needs and outlines how to translate them into concrete interventions. Developan overall action plan for coordinating your project and speciﬁc action plans for eachactivity you decided to embark on. Your plan should specify who is in charge of eachproject, the staff required to put it into practice, and communication pathways with projectrecipients. It should contain clear descriptions of each measure, outline a project schedule,and allocate a budget. Whatever project you plan, make sure to obtain the support andcommitment of the leadership of your organisation. This is important to ensure that theprogramme is present on the organisation’s agenda, to secure the necessary funds, and tofoster project sustainability [32]. To be effective in the long run, anti-stigma programmesshould eventually become integrated into organisational routines and practices. It has beenshown to be worthwhile to plan for programme continuity from the outset. The Germanschool project ‘Crazy? So what!’, for example, liaised closely with educational policy fromthe early stages of the planning process. For instance, their intervention drew on policiessuggesting that schools should play a more important role in developing students’ socialcompetencies by including a preventive component aiming to strengthen young people’scoping capacities. After successful pilot interventions at Leipzig schools [50], the nationalNGO Aktion Mensch decided to provide funding to train 20 regional project teams acrossGermany with the aim of installing the project as a regular feature of secondary education(www.verrueckt-na-und.de/html/english.html).
From needs to action – examples from the WPA Global Programme
against Stigma
So far, this chapter has introduced methods to assess programmatic needs and to trans-
late needs into programme priorities. Using examples from four countries participating inthe World Psychiatric Association’s Global Programme against Stigma, this section willillustrate how this process may look in practice.
Canada
The Canadian province of Alberta was the pilot site for WPA’s anti-stigma efforts. Thepilot programme sought to test different avenues of anti-stigma action in order to gatheras much experiential data as possible for future participants. Therefore they addressed alarge collection of target groups, one of them being health care professionals. As part oftheir needs assessment, they conducted a survey among people with schizophrenia abouttheir experiences with treatment in emergency situations. At the same time, hospitals wereasked to complete a questionnaire regarding their provisions for psychiatric emergencies

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at their emergency rooms (ER). Surveys were designed to elicit information on matters
highly relevant to the treatment of people with schizophrenia, including privacy, security(for patients and staff), policies on patient rights and the use of restraints, staff training inmental health and crisis management, waiting times and patient and family satisfaction withservices (Thompson et al. in [51] pp. 229–233). Results revealed deﬁcits at some hospitals,
such as limited availability of staff with special qualiﬁcations regarding the handling ofmental health emergencies, a lack of routine procedures to inform patients with schizophre-nia and their families of their rights, insufﬁcient training of emergency staff in managingmental health crises, the absence of client satisfaction data, and some degree of neglect andmarginalization of ER psychiatry on the part of ‘mainstream’ psychiatry and mental healthand the ER departments.
In discussing needs assessment results, programme planners paid attention to the speciﬁc
situation in the hospitals surveyed. In the priority-setting process, however, the group foundthat the most important issue is whether or not psychiatric patients in emergency departmentsare treated appropriately. As a result, their programme focussed on developing and adoptingacceptable standards and practices by each hospital with an ER. To this end, the groupsubmitted the results of their research and the following ﬁve recommendations to hospitaldirectors and emergency room directors:
rThat the examination and interview process and space are adequate for safety, securityand privacy of patients and staff.
rThat there are enough interview rooms available to ensure privacy during interviewsin most situations.
rThat these interviews are located near or with easy access to hospital security personnel.
rThat security staff are available in a timely, as needed, basis.
rThat a policy is in place for governing the use of restraints.
The local action group discussed the ﬁndings with the individuals in charge and then
followed up on the progress of these recommendations. In addition, discussions were heldwith the Canadian Council on Health Services Accreditation and Regional Health Au-thorities. By focusing on this speciﬁc point of encounter and stigmatising experiences,the Canadian group was able to effect one of the greatest changes achieved by the pro-gramme: the adoption of these recommendations as part of the national hospital accreditationprocess [51].
Germany
The German anti-stigma centre in Leipzig has long-standing expertise in surveying publicattitudes towards the mentally ill. Results consistently revealed a predominantly negativepicture. It was therefore the initial assumption of the local action team that improvingpublic attitudes should be the primary goal of their programme. A public awareness cam-paign seemed to be the way ahead. To obtain the views of the intended beneﬁciaries of theprogramme, they conducted focus groups with people suffering from schizophrenia, theirfamily members and mental health professionals. Needs assessment results showed that,from their point of view, stigma went beyond social rejection. Besides disadvantages expe-rienced in the context of interpersonal interaction, focus groups revealed three additional

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118 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
dimensions of stigma: public images of mental illness, limited access to social roles and
structural discrimination [52]. These ﬁndings led programme developers to expand theirspectrum of interventions. In order to have sufﬁcient resources available to address all theseproblems, they abandoned the idea of a public relations campaign in favour of setting upthe association ‘Irrsinnig Menschlich e.V .’ which focuses on public relations in the ﬁeld ofmental health and psychiatry. The association was to develop several strands of action, ona smaller scale but on a continuous basis:
rTo improve public attitudes , a school project was initiated, aiming to counteract stereo-
types about mental illness before they arise or become reinforced.
rMore accurate media representations were to be accomplished by supporting journal-
ists in their research on mental health issues and simultaneously training people withmental illness as well as mental health professionals to work with the media.
rA third line of action aims to tackle structural discrimination. In 2003, Irrsinnig
Menschlich e.V . created the ‘Courage Award’ for politicians committed to equal rightsfor people with mental illness, which invites proposals from all over Germany andhas been receiving considerable media attention and support from prominent publicﬁgures.
The Leipzig project provides an example of how priority-setting does not necessarily
require to address one need at the expense of another. Rather, a time schedule was developedto implement projects tackling the crucial needs in a gradual fashion. This took placewithin the framework of the association which ensured a continuous presence of anti-stigmamessages in the public discourse.
Morocco
As in other developing countries, needs assessment in Morocco has indicated signiﬁcantinvolvement of the family in the lives of patients. Not least, this is due to a lack of mentalhealth services in the country: only 300 psychiatrists cater for a population of 30 million.Interviews with people treated for schizophrenia at outpatient clinics at the two psychiatrichospitals in Casablanca revealed that the majority had lost their jobs and friends, and that95% of patients lived with their families throughout the duration of the illness, on averagemore than 10 years. Many relatives faced signiﬁcant stigma themselves, in particular fromneighbours in their communities. As a result, they tried to conceal the fact that their familymember had a mental illness and to protect them by not letting them leave the communityor hold a job [51].
Based on these results, Moroccan programme developers reasoned that information alone
would not be sufﬁcient to ﬁght the stigma associated with schizophrenia. Instead, their ﬁrstinterventions targeted patients with schizophrenia and their families. Weekly meetings wereorganized with patients in inpatient settings at hospitals to explore the topic of stigma andhow to best ﬁght it. The groups explored coping strategies for both patients and families.Experiences from these groups resulted in a second wave of needs assessment. Focus groupswere conducted to examine ﬁrst-hand experiences of stigma and its effects on prognosis ofthe illness, revealing three dimensions of stigma [53]:
rThe image of the illness itself . For example, ‘aggressiveness’ and ‘dangerousness’
were characteristics often associated with schizophrenia.

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rThe stigma of interpersonal interactions . This included the ‘social isolation’ reported
by those living with schizophrenia and their families.
rStructural discrimination . Here, people with schizophrenia reported the lack of reha-
bilitation services as being the most serious structural disadvantage they face. Familymembers expressed a particular concern about the quality of available care.
Programme developers concluded from these data that they must ﬁrst educate individuals
with schizophrenia and family members about the illness, about available treatment optionsand about ways to improve the quality of life of those living with schizophrenia. The Mo-roccan programme also works in close cooperation with two family associations speciallyfocused on schizophrenia. These groups sponsor seminars on the stigma of schizophreniafor their members [51].
Given the strained situation of mental health care in the country, the programme ad-
ditionally engaged in lobbying the Moroccan Parliament concerning the availability ofmedications, the rights of the mentally ill, and their treatment by police and ofﬁcials in thepenal system. Also, they speciﬁcally targeted the medical profession, whose members werefound to hold strongly stigmatising views. Interventions included an article in a journalfor general practitioners and hosting an on-line forum discussion on the stigma of mentalillness at the website of the Maghrebian Journal of Psychiatry [51].
As we have seen, the Moroccan programme planners started their assessment by exploring
ﬁrst-level needs. To substantiate these ﬁndings, they consulted existing data sources onthe levels of mental health service provision and surveyed general practitioners regardingtheir knowledge of schizophrenia. As part of their priority-setting, they explicitly consultedfeasibility criteria. This becomes particularly crucial when programmes are confronted witha scarcity of resources, both for their anti-stigma activities and for mental health servicesin general. Consequently, the two major avenues of ﬁghting stigma in Morocco were (1)strengthening support networks for the family members who currently provide the bulk ofcare of people with schizophrenia and (2) preparing the ground for better access to adequatetreatment for mental health problems by educating the medical community.
Switzerland
In Switzerland, a survey on public attitudes has shown that a large share of the population islittle informed about mental health problems and would prefer to avoid social contact withsomeone suffering from mental illness [54]. This motivated leading mental health profes-sionals to initiate activities to tackle stigma and discrimination. Focus groups with patientsand family members were conducted in Geneva and Zurich to assess programmatic needs.Contrary to what programme planners would have expected from their survey ﬁndings, re-sults revealed that service users experience a large share of stigma as part of their psychiatrictreatment. Stigmatising aspects of their relationship with mental health providers includeda lack of interest in their person and the history of their mental health problem, the fact thata psychiatric diagnosis is often given with a negative prognosis and impersonal treatmentduring inpatient care.
Following up on these ﬁndings, a survey was conducted on mental health professionals’
attitudes towards people with mental illness. Conﬁrming the results of the focus groups,mental health professionals were found to hold equally stigmatising views as does thegeneral public. Regarding some aspects, such as the assumption that people with mental

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120 EVALUATING PROGRAMMATIC NEEDS CONCERNING THE STIGMA OF MENTAL ILLNESS
illness are dangerous or unreliable, psychiatrists’ attitudes were even more negative than
those of the general population [55].
A review of the literature on factors contributing to stigma suggested that, in actual
fact, regular personal contact with someone suffering from mental illness was found to bethe most effective way to reduce stigma or to prevent it from occurring in the ﬁrst place.According to these ﬁndings, then, mental health professionals should hold few stereotypingviews about their patients. This contradictory evidence raised questions about the type ofcontact mental health providers entertain with people with mental illness.
Here it becomes evident that, while work in psychiatry can be highly rewarding, inter-
esting and challenging in a positive sense, mental health professionals are confronted withan array of psychosocial stressors. In fact, the very nature of health service work is suchthat it promotes and maintains a negative perception of clients: professionals’ contact withpatients is usually limited to times of acute crisis and focused on improving symptomsand illness-related deﬁcits. At the same time, patients may not always follow professionals’advice, thus negatively affecting their sense of achievement. These pressures may lead to anemotional withdrawal from client contact and foster therapeutic pessimism – exactly thoseaspects of mental health professionals’ behaviour that service users and family membersexperienced to be stigmatising.
However, mental health professionals are guided by their desire to provide effective treat-
ment and care. Hence it is likely that most stigma in the context of treatment relationshipsoccurs unintentionally. Rather, it may be a response to increasing pressures on mental healthservices, coupled with little individual control and a lack of recognition of one’s own com-mitment by colleagues or superiors, or indeed by patients. This situation has been found tobear the risk of burnout: feelings of emotional exhaustion, increasing distancing from one’spatients in an attempt to cope with excessive demands, and ﬁnally a negative perception ofone’s work performance [56].
Swiss programme planners therefore decided to focus their anti-stigma efforts on mental
health professionals, following two aims:
1. supporting mental health professionals in managing work-related stressors and pre-
venting job burnout;
2. developing resources to foster cooperative treatment relationships and thus reduce
both the risk of burnout and ensuing negative behaviours towards clients.
Interventions include training modules on stress management and empowerment com-
petencies such as shared clinical decision-making, as well as a nationwide staff survey onwork-related stress and resources. Mental health services taking part in the survey are givenfeedback on their results and receive recommendations concerning organisational measuresto reduce the risk of burnout and enhance a positive work climate. Further, contact withservice users in competent roles will be a central element of the training programme tocounteract the negative perspective inherent in the helping relationship [57].
Final considerations on assessing programmatic needs
The practical examples outlined above emphasize that programmatic needs on the stigmaof mental illness can vary signiﬁcantly, depending on local context variables. These expe-riences further illustrate that, frequently, programme developers’ initial assumptions on the

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FINAL CONSIDERATIONS ON ASSESSING PROGRAMMATIC NEEDS 121
most crucial problems to be tackled have been supplemented, if not contradicted, through
collecting needs assessment data. This highlights the importance of assessing need in tar-geting effective anti-stigma interventions.
Examples also highlight that exploring anti-stigma needs must not stop at collecting
and analysing data. Failing to use data to make programme choices and set priorities hasbeen noted as one of the most common mistakes in conducting a needs assessment [14].This does not necessarily imply that needs analysis is not followed by action to resolvethe problems identiﬁed. Rather, planning for programme activities may not take sufﬁcientaccount of needs assessment ﬁndings and go ahead according to the best of programmeplanners’ knowledge.
This is likely to jeopardize the success of their programme. For one, the most important
problems may remain unattended, with serious consequences for people’s lives and theprovision of adequate psychiatric care. Indeed, failing to act on needs assessment ﬁndingsmay be particularly counterproductive in the context of anti-stigma activities. Researchon programme effectiveness has found that raising awareness of stigmatising views byadministering an opinion survey may actually emphasize negative attitudes if the assessmentis not followed by an intervention. This was assumed to be due to the potential of negativestatements in the attitude questionnaire to activate participants’ prejudicial cultural beliefsregarding mental illness [58].
A further risk of falling short of translating needs assessment results into action may be
less apparent, but equally important: assessing programmatic needs is a political process.In actual fact, conducting a needs assessment already constitutes an intervention. Whendecision-makers commence to initiate an evaluation of needs and problems, awareness israised among members of the organisation and the public. Attention to a problem, then,creates the expectation that something will be done about the issues identiﬁed. Failing todo so may lead collaborators, partner organisations and sponsors to have second thoughtsabout supporting the programme or to lose trust in the project leadership.
Beyond acting upon their needs, those with a mental illness and their relatives should
be an integral part of anti-stigma programme activities. For research on public attitudesagrees that positive personal contact with people to whom common stereotypes are ap-plied is the single most effective predictor to alter negative conceptions as well as dis-criminatory practices [59–61]. Their active involvement further enhances social integra-tion and self-esteem, thus contributing to user empowerment for an active participationin society, as well as positively affecting both their well-being and their symptomatology[62–64].
As R., a young man who has had schizophrenia and participated in the project team of
the German school project ‘Crazy? So what!’, conﬁrms:
Eight years ago I became ill: I developed schizophrenia, triggered by taking drugs.
I’ve been feeling better now for two years. But I do have to take good care of myself.But hiding because of that? These times are over. I ﬁnally want to live now! Talkingto the students is exhausting, but also really great. I like being among people. Thekids are very open-minded, have hardly any reservations. And what’s the best for me:they discover that there are a lot more commonalities than differences between us,that their images of ‘the crazy ones’ are not true. It feels really good to contribute toachieving that we ﬁnally can talk openly about mental illness, and that nobody has tohide because of a mental health problem. [65]

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This insight has guided the approach of the World Psychiatric Association’s global pro-
gramme ‘Open the Doors’ against stigma and discrimination because of schizophrenia [20,51]. It builds on cooperation between mental health experts and those experts who knowwhat stigma and discrimination entail from their everyday experience: people with mentalillness and their families. The success of programme activities in 20 countries conﬁrms thatthese groups must be important partners in programmes to reduce stigma and discriminationfrom the outset. And effective anti-stigma activities start with assessing programmatic needs.
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minierung – Bew ¨altigung. Der Umgang mit sozialer Ausgrenzung psychisch Kranker (Stigma –
Discrimination – Coping. Responding to the Social Exclusion of the Mentally Ill) (pp. 122–144).Stuttgart: Kohlhammer.
46. Guti´ errez-Lobos, K. (2002) Rechtliche Benachteiligung psychisch Kranker in ¨Osterreich (Legal
discrimination of people with mental illness in Austria). Neuropsychiatrie 16, 22–28.
47. Sayce, L. (2000) From Psychiatric Patient to Citizen: Overcoming Discrimination and Social
Exclusion . Basingstoke: Macmillan.
48. Weimer, D.L. and Vining, A.R. (2005) Policy Analysis: Concepts and Practice (4th edn). Upper
Saddle River, NJ: Prentice Hall.
49. Needs assessment in adult education. Edmonton, Alberta, Canada: Workshop sponsored by Fac-
ulty of Extension, University of Alberta, 1995.

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50. Schulze, B., Richter-Werling, M., Matschinger, H. and Angermeyer, M.C. (2003) Crazy? So
what! Effects of a school project on students’ attitudes towards people with schizophrenia. Acta
Psychiatrica Scandinavica 107, 142–150.
51. Sartorius, N. and Schulze, H. (2005) Reducing the Stigma of Mental Illness. A Report from
a Global Programme of the World Psychiatric Association . Cambridge: Cambridge University
Press.
52. Schulze, B. and Angermeyer, M.C. (2003) Subjective experiences of stigma. A focus group study
of schizophrenic patients, their relatives and mental health professionals. Social Science and
Medicine 56, 299–312.
53. Kadri, N., Manoudi, F., Berrada, S. and Moussaoui, D. (2004) Stigma impact on Moroccan
families of patients with schizophrenia. Canadian Journal of Psychiatry 49, 625–629.
54. Lauber, C., Nordt, C., Falcato, L. and Rossler, W. (2004) Factors inﬂuencing social distance
toward people with mental illness. Community Mental Health Journal 40, 265–274.
55. Nordt, C., Rossler, W. and Lauber C. (2006) Attitudes of mental health professionals towards
people with schizophrenia and major depression. Schizophrenia Bulletin 32, 709–714.
56. Maslach, C., Schaufeli, W.B. and Leiter, M.P. (2001) Job burnout. Annual Review of Psychology
52, 397–422.
57. Schulze, B. and Rossler, W. (2005) New perspectives on reducing stigma: ﬁghting burnout to
enhance provider attitudes of recovery. European Psychiatry 20, 222.
58. Ng, P. and Chan, K.F. (2000) Sex differences in opinion towards mental illness of secondary
school students in Hong Kong. International Journal of Social Psychiatry 46, 79–89.
59. Pettigrew, T.F. (1998) Intergroup contact theory. Annual Review of Psychology 49, 65–85.
60. Penn, D.L. and Couture, S. (2003) Interpersonal contact and the stigma of mental illness: a review
of the literature. Journal of Mental Health 12, 291–305.
61. Corrigan, P.W., River, L.P., Lundin, R.K., Penn, D.L., Uphoff-Wasowski, K., Campion J et al.
(2001) Three strategies for changing attributions about severe mental illness. Schizophrenia Bul-
letin 27, 187–195.
62. Lehman, A.F. (1983) The well-being of chronic mental patients. Archives of General Psychiatry
40, 369–373.
63. Breier, A., Schreiber, J.L., Dyer, J. and Pickar, D. (1991) National Institute of Mental Health
longitudinal study of chronic schizophrenia. Prognosis and predictors of outcome. Archives of
General Psychiatry 48, 239–246.
64. Brekke, J.S., Levin, S., Wolkon, G.H., Sobel, E. and Slade, E. (1993) Psychosocial functioning
and subjective experience in schizophrenia. Schizophrenia Bulletin 19, 599–608.
65. Irrsinnig Menschlich e.V . (2002) ‘Stark, wenn sich einer traut ¨ uber seelische Probleme zu re-
den!’ Verr¨ uckt? Na und! Das Schulprojekt von Irrsinnig Menschlich e.V .; Informationsbrosch¨ ure.
(‘Cool when someone dares to speak about mental health problems!’ Crazy? So what! The SchoolProject of the Association ‘Irrsinnig Menschlich e.V .; Information Brochure.) Leipzig: IrrsinnigMenschlich e.V .

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7Using the Internet for ﬁghting
the stigma of schizophrenia
Hugh Schulze
President, c/Change inc., Chicago, USA
Introduction
In 1996, the World Psychiatric Association launched its global programme to ﬁght stigma
and discrimination because of schizophrenia. Just one year before, new Internet browsersand other innovations opened up unprecedented access to the World Wide Web. Over thenext 10 years as the global programme to ﬁght stigma expanded into two countries, Internetusage and international online communication grew exponentially.
The website of the global anti-stigma programme, www.openthedoors.com, was created
to disseminate information about schizophrenia as well as the stigma and discriminationassociated with it. To this day, those living with schizophrenia and their families and friendsaccess the site daily – as do academicians, students and professionals from a wide range ofdisciplines. This chapter describes lessons learned from the eight years since the launch ofwww.openthedoors.com.
Internet growth and implications for mental health education
According to Nielsen/NetRatings and IDC estimates, in the decade between 1995 and 2005global usage of the Internet rose from 16 million (or roughly 0.4% of the world’s population)to nearly 972 million (or 15.2% of the population). In just ﬁve years, from 2000 to 2005,Internet usage on the continent of Africa rose 428.7% to 23,867,500. Usage in Asia is morethan ten times as great, with an estimate of 327,066,713 for September 2005.
An ‘Internet gap’ has clearly existed between developed and developing countries. The
World Summit on the Information Society, sponsored by the United Nations and the Inter-national Trade Union (www.itu.int), reported that 3% of those in Africa use the Internet,compared to 50% for G8 countries.
While the rates of increase vary from country to country, the rapid growth in use of the
Internet continues globally. Search engines, such as Google and Yahoo, are making moreand more information accessible in more and more languages.
At ﬁrst glance, regarding issues of mental health, this increase in information may appear
like a positive development. But are more questions – and concerns – raised as moreinformation is made available? Does an increase in information lead to a reduction instigma? Reports from the 20 countries participating in the WPA Global Programme to
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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126 USING THE INTERNET FOR FIGHTING THE STIGMA OF SCHIZOPHRENIA
Fight the Stigma and Discrimination because of Schizophrenia have shown that increased
knowledge does not necessarily lead to improved attitudes [1].
A search of Internet sites reveals that far more consumer and family groups are dealing
with the question of stigma and discrimination because of schizophrenia than websites foracademicians or health care professionals. While there is anecdotal evidence that online chatrooms and forums are providing online communities for consumers and family members toshare information [2], little information is currently available on actual changes in attitudesbased upon web-based interventions [3].
The WPA programme
Given the speed with which the Internet has developed as a communication medium, a fewhistorical references may provide some perspective:
rThe ﬁrst version of the Netscape web browser was introduced in the second half of1994.
rMicrosoft’s Internet Explorer was not released until August of the following year.
rJust one month earlier in 1995, Amazon.com ﬁrst began selling books online.
When the World Psychiatric Association, under then-president Professor Norman Sar-
torius, launched the Global Programme to Fight the Stigma and Discrimination becauseof Schizophrenia in 1996, standard mail, telephone and fax were the primary channels ofcommunication used by the forty psychiatrists and mental health professionals involved.The Internet was still being watched a bit warily. At that time, more than half of Internetusers were in the United States and many wondered if this might be a passing Yankee fad.
By 1998, a signiﬁcant shift was already under way. The use of e-mail had become the
primary communication tool among programme participants. In September of that year,the Steering Committee of the programme agreed to establish a website to disseminateinformation being developed by the global experts. By 2005, at the World Congress ofPsychiatry in Cairo, Egypt, more than 20 countries were participating in the global anti-stigma effort and the website had been translated from English into Arabic, German, Italian,Japanese, Portuguese and Spanish – more languages than for the websites of the WorldHealth Organization or the United Nations.
Both the design and content of the website have been updated over time. However, the four
main navigational portals or ‘doors’ have remained the same. These include an overview ofthe global programme, its mission and its members, an area for mental health professionals,an area for family members, friends and those living with schizophrenia, and ﬁnally an areafor personal stories.
Opening doors
Enlisting the services of a marketing communications company, the programme’s SteeringCommittee developed a name and logo that could be used to identify the efforts of theprogramme. ‘Open the Doors’ was selected for several reasons:
1. It quickly communicated one of the main goals of the programme: to assist in the
reintegration of those living with schizophrenia back into society;

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OPENING DOORS 127
2. The three-word slogan, opening with an action verb, was a call to action;
3. Accompanied by the logo graphic of an opening door, it was easily translatable and
understandable. The logo was subsequently translated into nine languages, includingArabic, Greek, Japanese and Portugese.
The brevity of this title (as opposed to its longer ofﬁcial title, World Psychiatric Associa-
tion Global Programme to Fight the Stigma and Discrimination because of Schizophrenia,which confounded even a workable acronym) also made it applicable for use as an easy-to-remember URL address: www.openthedoors.com.
The domain ‘.com’ was chosen over ‘.edu’, given that such a domain denotes an afﬁliation
with a speciﬁc academic institution. Similarly, while the World Psychiatric Association itselfuses ‘.org’ as a domain (www.wpanet.org), the .com registration has been the most commontop-level domain for websites since the 1990s’. The top-level domain ‘.net’ was originallyintended to identify Internet service providers.
The group conducted a review of other websites dealing with stigma. Virtually all of the
relatively few were (and still are) afﬁliated with consumer and family advocacy groups,such as www.nami.org of the National Alliance for the Mentally Ill in the United States andwww.sane.org of the Schizophrenia Australia Foundation. These in turn focus on mental ill-nesses in general, unlike the WPA anti-stigma website which focuses solely on schizophreniaand its related stigma.
Box 7.1: Message boards and threaded discussions
The National Alliance for the Mentally Ill (www.nami.org) and other support organiza-
tions have discussion areas for those living with mental illness and their family membersand friends. Visitors to the NAMI website are required to provide information on them-selves such as an e-mail address and a password. The visitor is then given access todiscussion areas on ‘schizophrenia’, ‘major depression’, ‘anxiety’, ‘OCD’ (obsessive-compulsive disorder) and ‘Other Mental Disorders’. This last category includes eatingdisorders and PTSD (post-traumatic stress disorder).
In 2000, the Open the Doors programme created a message board whereby programme
participants could share best practices or pose questions to other local action groups par-ticipating in the global effort. To ensure the information was kept to only those individualsinvolved in an intervention through the WPA anti-stigma effort, this discussion area waspassword-protected. All heads of sites were given the password.
After initial postings by members in the ﬁrst few months, participation dropped off
precipitously. Participants defaulted to using e-mail for regular questions or insightsabout the anti-stigma efforts. In 2002, this discussion board was discontinued.
Compared to other online discussion boards by support groups, this effort lacked:
rA large enough universe of active participants for involvement and responses tonew postings;
rA time-critical need for information.
One recommendation for any future effort would be to allow access and postings from
others involved in mental health education or anti-stigma programmes.

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128 USING THE INTERNET FOR FIGHTING THE STIGMA OF SCHIZOPHRENIA
Developing Web content
The informational content to be presented on the WPA anti-stigma website was gathered
into four navigational portals or ‘doors’:
1.Global Programme. This area is devoted to information on the global programme
itself, including:
a. Information on the ﬁve committees of the programme – the Steering, Awareness,
Reintegration, Stigma and Review Committees.
b. Downloadable materials, including reports, bibliographies and programme logos
in different languages;
c. Contact information for local action groups in each of the participating countries.
2.Professionals. The content of these pages is taken from V olume II of the programme
materials which was assembled by 40 global mental health experts. Categories in thisarea include:
a. Aetiology of schizophrenia
b. Treatment information
c. Links for professionals
3.Family members and friends. The content of these pages was taken from an educational
handbook developed for the families and includes information on:
a. Causes of schizophrenia
b. Myths and stereotypes
c. Reintegration.
4.For personal stories. This area was set aside to allow consumers and family members
to post stories of the stigma they experienced, as well as practical steps to address thatstigma.
Since 1998, the ﬁrst area, with information on the Global Programme , has been updated
on a regular basis. Much of the Professional and Consumer sections have remained thesame. A few additional stories have been added to the last section. As of 2005, those storiesinclude ﬁrst-person accounts from Canada, India, Germany, the United Kingdom and theUnited States – all sites of the Global Programme.
Perhaps the most signiﬁcant change has occurred at the ‘Homepage’ interface, where
additional languages have been added as content has been translated. Each has been trans-lated to varying degrees from the initial English content. The choice of what section(s) totranslate was made by each local action group after an assessment of communication needsand the target audiences of their efforts.
The Arabic, Greek and Portuguese versions have both the ‘Professionals’ and ‘Families
and friends’ sections fully translated. The Arabic and Greek versions also have amendedintroductions under the Global Programme section.

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WEBSITE USAGE 129
For the Italian translation, only the section for ‘Professionals’ has been translated. The
German local action groups, on the other hand, have only translated the ‘Families andfriends’ portion.
The local action group in Spain maintains a separate informational website, which is
linked through the Open the Doors portal. Similarly, the Japanese local action group, whileusing a similar, linked architecture has content maintained in Japan.
The combination of languages can also help in directing search engines to the site. Ce-
cilia Villares, director of the local action group in S˜ ao Paulo, Brazil, observes that for
Portuguese users: ‘When someone types in esquizofrenia’ (schizophrenia) in the Googlesearch engine, the website does not appear in the ﬁrst page. However, when you add doenc ¸a
(illness), doenc ¸a mental (mental illness), transtorno mental (mental disorder), estigma
(stigma), discriminac ¸˜ao(discrimination), sintomas (symptoms), tratamento (treatment) –
the openthedoors.com link has been among the ﬁrst 10 or 15 sites listed.’ Professor Villaresreports having been contacted through the website by Portuguese and Brazilians living inother countries.
Website usage
Statistical data for website usage can sometimes be misleading. While ‘hits’ to a websiteare often reported, a ‘hit’ is reporting retrieval of data. A single page with two or threegraphics would include those graphics as separate ‘hits’. Simply arriving at a website isno indication that it was the destination intended. For example, as the box below reports,some web users who found openthedoors.com came to the website by searching for therock group ‘The Doors’.
Box 7.2: Searching for stigma
When developing webpages, programmers often insert software code, referred to as
metatags, or keywords, in the page’s HTML code. These metatags are like Exit signs onthe information superhighway, directing search engines to relevant content in your site.For the month of October 2005, the top keyword used in search engines which broughtvisitors to www.openthedoors.com was ‘schizofrenia’. A little more than a quarter of allkeyword enquiries bringing trafﬁc to the site (27.4%) of 1070 visitors typed ‘schizofrenia’into the search engine. Other search engine enquiries included:
what causes schizophrenia – 3.2%
s´ıntomas de la esquizofrenia –3 %
schizophrenia – 2.8%
One hundred and ﬁve visitors in October 2005 came to the website looking for infor-
mation on the rock group ‘The Doors’. This was followed closely by ‘hereditariedade’(101 visitors).
At present, programs called ‘spiders’ and ‘crawlers’ are used by search engines to also
check for content embedded in downloadable ﬁles on websites. These ﬁles might be in.pdf format, for example. Thus by posting articles or additional information in down-loadable .pdf ﬁles, websites are able to achieve higher ‘hit rates’ and greater relevancyratings to supplement efﬁciency with well-chosen metatags.

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130 USING THE INTERNET FOR FIGHTING THE STIGMA OF SCHIZOPHRENIA
18,000
16,000
14,000
2001
2002
200512,000
10,000
8,000
6,000
4,000
2,000
0
Figure 7.1 Visitors per month
A far more useful statistic is ‘visitor’ which identiﬁes individuals who visited a site more
than once and can be further reﬁned as those who spent three minutes or more at the site.
Simple statistical records from most Internet providers can also indicate the number of pages
viewed, so that content developers are able to track what areas are most frequently visited.
As Figure 7.1 shows, in 2001, the average number of people spending three or more
minutes at the site was 6500 per month. Of those, 112 visited more than 10 times. The
average length of those visits was 9 minutes and 18 seconds.
Trafﬁc to the website in 2002 peaked in October at 14,261 for the month. This spike in
activity may have been due to interest following the WPA World Congress that was held in
Yokohama in August. Several psychiatrists involved with the programme presented results
on stigma interventions in Austria, Canada, Germany, Greece, Italy, Japan, Spain and the
United States.
In 2005, the average number of visitors per month was 16,140 – roughly two and a half
times the number of visitors four years earlier.
Statistical reports from 2003 to 2005 indicate that trafﬁc from .com and .net domains
(largely English-speaking users) accounted for roughly 46% of the trafﬁc. (Another 20%
were unidentiﬁable.) However, the leading country domain sufﬁx, which resulted in 16,363
returning visitors, was .it (for Italy). This high percentage of Italian visitors to the site was
conﬁrmed by reviewing Page View statistics, which rank the relative trafﬁc for individual
pages of the site. Italian pages of the website ranked higher than all other languages save
English – and were higher than many of the pages in English.
Visitors from different countries included (ranked in descending order):
Italy (.it) – 16,363
Brazil (.br) – 9139
Saudi Arabia (.sa) – 5653
Japan (.jp) – 5031

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WEBSITE ENQUIRIES 131
Germany (.de) – 2851
Greece (.gr) – 2478Mexico (.mx) – 2231Educational sites (.edu) – 2081
Again, these were individuals who visited for more than three minutes. These numbers
are also lower than the actual total, given that some visitors from these countries might beincluded in the 60,501 visitors who were identiﬁed with the .com domain sufﬁx.
Dr Chiara Buizza reports that the local action group in Italy has promoted the global
website as an information resource. This has increased trafﬁc in that country. She also citesa growing interest in stigma and stigma-related issues by the general public as one of thereasons the website is so frequently referenced.
Overall, one important corollary appears to be that where a local action group has been
established by the WPA global programme, website trafﬁc for that country and languageincreases as well. Each of the countries listed above has a local action group in place, savefor Saudi Arabia and Mexico. The usage for these two countries, however, is undoubtedlya reﬂection of the translations available in Arabic and Spanish.
Statistical reports of website activity indicate people from well over 100 countries have
visited the site. More speciﬁcally, the local action groups in the twenty countries involvedreport that the website has also directed many people to their own anti-stigma initiatives. Thisincludes those living with schizophrenia and family members in need of further information,journalists seeking more information, mental health professionals seeking more informationon the anti-stigma programme, and volunteers interested in supporting their efforts. Inaddition, the website has helped several local action groups to link up their efforts withother mental health and consumer organizations in their own country.
Mental health professionals who have learned of the programme and website have also
contacted the WPA about starting a programme in their country. Several of those initiativesare in the planning stages as of this writing.
Website enquiries
E-mail enquiries also provide an insight into the use of the website by visitors. On average,messages from visitors are received every three to four days and fall into roughly fourcategories:
rFamily members or friends asking for more speciﬁc information on symptoms. Manyof these relate concerns or frustrations they may be encountering with a person closeto them.
rAcademicians and students, most often at university level, seeking more information,such as bibliographies for further study on schizophrenia or stigma.
rIndividuals or groups may request to have links to their website placed on the openthe-doors.com website or offer to place links on their website.
rAnti-psychiatry activists also write to contradict information presented on the site oroffer alternative therapeutic strategies such as mega-vitamins.

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132 USING THE INTERNET FOR FIGHTING THE STIGMA OF SCHIZOPHRENIA
Responses are usually sent to the ﬁrst three groups. For family members and friends, no
information or online diagnosis is given but rather, based upon the speciﬁc enquiry, sugges-tions are made for speaking to a medical professional or local support group in that country.
Conclusions and recommendations
The website, www.openthedoors.com, has served four purposes for the WPA Global Pro-gramme to Fight the Stigma and Discrimination because of Schizophrenia:
1. It has provided a central informational resource on the programme internationally,
including presentation of materials such as the programme bibliography, programmeguidelines in V olume I and compendium of the latest information on schizophreniaand stigma, contained in V olume II.
2. It has provided information on the groups and activities in the twenty countries involved
in the global effort.
3. It has served as an informational resource for the local action groups working in those
countries, providing follow-up information after presentations or discussions.
4. More broadly, it has served as an informational resource – in eight languages – for those
who are unaware of the programme itself but interested in topics such as schizophreniaand the stigma associated with it.
Moving forward, other website details being considered are: an online questionnaire
and tool to assess knowledge of and attitudes about schizophrenia targeted to the generalpublic; further links to other initiatives combating the stigma and discrimination associatedwith mental illness in general; and development of a newsletter to provide more ongoingcommunication and updates on activities in individual countries – with the goal of creatinga central repository of information on best practices on educating about schizophrenia andﬁghting its stigma and discrimination.
Based on the experience with the programme website over the past seven years, we
would make the following recommendations for other mental health initiatives developinga website:
rA brief, memorable URL address will help visitors remember your site;
rUse metatags and .pdf attachments to receive the highest relevancy scores with Internetsearch engines such as Google;
rAllow printable or downloadable options for content to allow users to review contentofﬂine;
rWriting for the web differs from writing for print media:
◦Long, scrolling screens of copy will not be read; if necessary, break the text into
shorter paragraphs or sections;
◦Creation of hyperlinks within the document can allow readers to link to other sections
of the website if a concept or term is unclear;
rEnquire at other websites with related or supplemental information, which mightprovide links to your website and similarly offer links to theirs.

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REFERENCES 133
In the ten years since the WPA Global Programme to Fight the Stigma and Prejudice
because of Schizophrenia was launched, well over a million visitors have viewed the web-site. Many of these have returned more than once and others have contacted members ofthe Global Programme or individuals working on local initiatives in speciﬁc countries. Inaddition to providing information on schizophrenia, the website has assisted in buildinga network of committed individuals working together to a common goal of reducing thestigma and discrimination because of schizophrenia.
References
1. Sartorius, N. and Schulze, H. (2005) Reducing the Stigma of Mental Illness . Cambridge: Cambridge
University Press.
2. Kissinger, M. (2005) Chat rooms’ beacon of hope. Milwaukee Journal Sentinel , 1 August, G:3.
3. Grifﬁths, K.M., Christensen, H., Jorm, A.F., Evans, K. and Groves, C. (2004) Effects of web-based
depression literacy and cognitive behavioural therapy interventions on stigmatizing attitudes todepression. British Journal of Psychiatry 185, 342–349.

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JWBK162-08 JWBK162-Arboleda March 18, 2008 12:50
8Building an evidence base for
anti-stigma programming
Heather Stuart
Department of Community Health & Epidemiology, Queen’s University, Kingston,
ON K7L 3N7, Canada
Summary
This chapter discusses the importance of building evidence in support of anti-stigma pro-
gramming in the current climate of evidence-based care and several key challenges facedby researchers in the ﬁeld. Anti-stigma interventions are approached broadly from a publichealth perspective that emphasizes the burden associated with mental illness and the impor-tance of population-based approaches designed to promote health and reduce disability. Themulti-faceted nature of stigma, the overall complexity of many anti-stigma interventions,and the evolving nature of many anti-stigma interventions, makes them difﬁcult to evaluate.Basing evaluations on explicitly deﬁned theories of program change helps to focus attentionon indicators that can be logically linked to program activities and extends knowledge abouthow and why a program works.
The burden of stigma and the rising popularity of stigma
reduction activities
This chapter adopts a public health perspective to consider evidence-based approaches for
anti-stigma activities. Public health is deﬁned as a set of efforts organized by society to
protect, promote and restore the people’s health through collective or social action [1]. A
public health perspective emphasizes the needs of the deﬁned populations based on an eco-logical deﬁnition of health that recognizes broad social and political determinants of diseaseand disability, and the relationship of individuals to the social and physical environmentsin which they live. Activities included under a public health model are public educationand communication; legislative, policy, and ﬁscal reform; social marketing of ideas andbehaviors; community advocacy and development; and local community action. All ofthese approaches have been variously used in the ﬁght to reduce stigma and discriminationbecause of mental disorders.
The public health importance of mental disorders is highlighted by the Global Burden
of Disease Study. In 1990, ﬁve of the top ten leading causes of disability worldwide weremental disorders, accounting for 22% of the total years lived with a disability. Depressionalone accounted for 10.7% of the years lived with a disability, making it the leading source
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
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136 BUILDING AN EVIDENCE BASE FOR ANTI-STIGMA PROGRAMMING
of disability years – more than double that of the next leading contender (anemia with
4.7%) [2]. Considering productive years lost because of death and disability, neuropsychi-atric conditions (and suicide) accounted for 15% of total burden of disease worldwide (25%in developed countries) – more than any other disease category [3].
Despite growing public health concern, mental disorders are not yet afforded the same
policy or program priority as comparably disabling physical disorders. For example, themajority of the world’s population still has little or no access to even the most basic mentalhealth treatments. A third of the countries reporting to the World Health Organization’s Men-tal Health Atlas Project in 2005, for example, had no speciﬁed budget for mental healthprogramming, and one in ﬁve spent less than 1% of their total health budget on mentalhealth [4]. Some two-thirds of the world’s population have access to fewer than one psychi-atric hospital bed per 10,000 population, and more than half of these beds remain in largecustodial institutions. Such institutions have been widely associated with poor psychosocialand clinical outcomes (including human rights violations), and are not recommended fortreatment of mental disorders [5]. Data from the World Health Organization’s Mental HealthConsortium Surveys tell a similar story. In developed countries, 35% to 50% of people withserious mental disorders living in the community did not receive any treatment in the yearprior to the survey. In developing countries unmet need was as high as 76% to 85% [6].
Treatment gaps such as these can be traced back to a process of stigmatization that
is fuelled by deeply held fears and prejudices – a process that limits access to adequatetreatment and rehabilitation, social beneﬁts, support and social and economic opportunities,and results in a cycle of disability and disadvantage [7, 8]. Modern mental health reforms,which are built on the notion of recovery, participation in normalized roles and relationships,and community integration, have been seriously undermined by public fear and intolerance.Discriminatory policies and practices are widely prevalent in both developed and developingcountries, making psychiatric stigma the single most important barrier to mental healthdevelopment worldwide [5, 9].
International public health efforts to reduce psychiatric stigma are gaining in presence and
popularity. The ﬁrst large-scale international anti-stigma effort was launched by the WorldPsychiatric Association in 1996 – a global program to reduce stigma and discriminationassociated with schizophrenia. This program is now operating in over 20 countries [9, 10].In 2001, at the 54th World Health Assembly, the World Health Organization called healthministers to action to redress mental health imbalances [11]. This was followed by a globaladvocacy program for mental health, initiated for World Health Day [12], and a globalaction program to raise awareness of the importance of mental health in 2003 [13]. In2004, the World Association for Social Psychiatry, the World Psychiatric Association, theWorld Association for Psychosocial Rehabilitation, the World Federation for Mental Healthand the Japanese Society for Social Psychiatry issued a joint statement urging the UnitedNations to recognize the importance of mental health problems and promote an anti-stigmamovement to improve acceptance and treatment of people with mental disorders [14].
National public health support for stigma reduction is also evident in a growing number
of ofﬁcial declarations, mental health system reviews, and action plans that highlight thedisabling effects of stigma and the importance of reducing discrimination. In 2004, forexample, the Council of European Ministers of Health pledged its support for anti-stigmaactivities in a special ministerial meeting convened by the Ministry of Health of Greece. InJanuary of 2005, the WHO Ministerial Conference on Mental Health marked the occasion forthe adoption of the Mental Health Declaration and the Mental Health Action Plan for Europe.Priorities for the next decade identiﬁed in the Declaration included collectively tackling

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stigma, discrimination and inequality, and empowering people with mental health problems
and their families to be actively engaged in this process [15]. In 2003, the White Housereleased the ﬁnal report of the President’s New Freedom Commission inquiry into mental
health system functioning. The Commission was charged with conducting a comprehensivestudy and making recommendations for a transformed mental health system that wouldreduce fragmentation and focus on the needs of people with mental illnesses. The ﬁrstgoal of the Commission was to help Americans understand that mental health is essentialto overall health. To accomplish this goal, they emphasized the importance of dealingwith mental health with the same urgency as physical health problems and recommendeda national campaign to reduce stigma and prevent suicide. Additional recommendationsaddress the need to reduce disparities in access to quality care and improve research [16].Almost ﬁve years earlier, the US Surgeon General’s report had highlighted stigma as akey determinant of psychiatric disability and the importance of stigma reduction efforts[17]. Canada has undergone a similar national mental health review undertaken by theStanding Senate Committee on Social Affairs, Science, and Technology. This marks theﬁrst Parliamentary interest in mental health displayed in half a century. The interim reportrecognizes the enormous importance of ﬁghting stigma and discrimination; the need fornational leadership, a prolonged effort, and a multi-pronged approach including community-based education and action, media campaigns, professional awareness campaigns, and theelimination of structural discrimination [18]. The ﬁnal report charges a newly developednational Mental Health Commission with the task of implementing programs designed toreduce stigma and discrimination [19].
Several nationally coordinated population-based anti-stigma initiatives have also emerged
over the last decade. In 1995, for example, Australia initiated a National Community Aware-
ness Program – an 8-million-dollar public advertising campaign to increase awareness about
mental illness [20]. In 1996 New Zealand initiated the Like Minds, Like Mine program in an
effort to create an environment that valued and included people with a mental illness [21]. In1998, the Royal College of Psychiatry in the United Kingdom launched a 5-year Changing
Minds campaign to improve understanding and reduce stigma and discrimination related
to six mental illnesses: anxiety, depression, schizophrenia, dementia, alcohol and drug ad-diction, and eating disorders. Public views of stigma were found to differ across each ofthese groups [22]. In 2002, the Japanese Psychiatric Society changed the Japanese name ofschizophrenia , meaning split mind disorder , to a term that is considered to be less preju-
dicial and more culturally palatable. The name change was intended to improve access totreatment and communication between doctors and patients regarding their diagnosis andtreatment [23]. To date, few of these initiatives have been empirically evaluated and theirimpact on the quality of life of people with mental disorders (and their family members) isunknown.
Evidence-based practice and anti-stigma programming
Scholarly interest in anti-stigma programming and evaluation is increasing. The ﬁrst in-ternational scientiﬁc conference on stigma and discrimination because of mental disorderswas held in 2001 (Leipzig, Germany), followed by a second in 2003 (Kingston, Canada),and a third in 2006 (Istanbul, Turkey) [24]. In 2005, the World Psychiatric Associationinitiated a scientiﬁc section devoted to the study of stigma and mental disorders in the XIIIWorld Congress of Psychiatry in Cairo, Egypt. A key goal of this section is to provide

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138 BUILDING AN EVIDENCE BASE FOR ANTI-STIGMA PROGRAMMING
international scientiﬁc leadership designed to foster the production of evidence that can be
used to diminish stigma and discrimination because of mental illness.
Despite these important initiatives, the evidence base to support best practices in the ﬁeld
of stigma reduction remains under-developed, incommensurate with the burden caused bystigma, and insufﬁcient to support the growing public health interest in stigma reduction.For example, a review of the clinical literature (OVID Medline and PsychInfo) shows littlescholarly interest in stigma or discrimination until the middle of the 1990s, when the numberof publications began to rise. Although interest is increasing, current levels – approximately100 publications a year with stigma ordiscrimination in the title or abstract – still reﬂect
less than 2% of all publications focusing on mental disorders.
A key impetus to building a better evidence base for stigma reduction programs comes
from the rise of evidence-based practice in general – a development that has been describedas one of the more remarkable phenomena to emerge in modern medicine [25]. Although theprinciple of using external evidence to support clinical practice goes back several centuries,modern evidence-based medicine emerged only recently, during the 1990s. In this shorttime, it has transformed medicine from a predominantly descriptive discipline, based oncareful clinical observation and experience, to one based on the direct application of the bestavailable research evidence to clinical decision-making. Through research syntheses andthe implementation of best practice guidelines, evidence-based practice attempts to reduceunjustiﬁed variations in clinical practice; promote the safest, most efﬁcacious treatments;and reduce dissemination time to incorporate scientiﬁcally sound results into standardcare. Clinicians now face unprecedented pressure to support their decisions with scientiﬁcevidence, and to develop the research and evaluation skills necessary to critically assessavailable scientiﬁc evidence for validity and applicability to their own practices [26, 27].Indeed, the rise of the discipline of clinical epidemiology as the basic science of medical
practice owes its success to the evidence-based revolution [28].
The rise of evidence-based medicine has prompted analogous transformations in health
services management and policy-making. Although slower to emerge, the case for evidence-based policy and practice has been equally difﬁcult to refute [29]. Referring to the BritishNational Health Service, Charlton and Miles describe the evolution of an interlocking systemof evidence-based activities – ranging from evidence-based medicine, through evidence-based education, research, nursing, public health and health policy – where all aspects ofhealth service practice will be based upon standardized monitoring and interpretation ofresearch and evaluation information [30].
Although psychiatrists have long used evidence to inform practice, the evidence-based
paradigm is also playing an increasingly prominent role in mental health. The ﬁrst paperto appear on evidence-based psychiatry appeared only about 10 years ago, and by 1998,there was a full journal dedicated to this topic. The inaugural editorial for this journalnotes considerable unexplained variation in psychiatric practice (including diversity inthe treatment of depression, use of electroconvulsive treatment, and use of prescriptionstimulants for the treatment of attention deﬁcit disorder), suggesting that psychiatrists are notusing the best available evidence and patients are not receiving the best available treatment[31]. As in other areas of medicine, psychiatrists are coming under increasing pressureto develop evidence-based skills and provide detailed instruction in research methods andcritical appraisal skills to psychiatric residents. Such skills are now viewed as essentialclinical tools required to provide the highest quality of care [32]. Teaching evidence-basedskills is also considered to be essential preparation for a future managed by increasinglyresearch-savvy and ‘evidence-hungry’ managers who will use the lack of evidence to restrict

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EVIDENCE-BASED PRACTICE AND ANTI-STIGMA PROGRAMMING 139
physician choice and limit patients’ access to care [26, 30]. In this climate, unambiguous
ﬁndings outlining best practices that are produced from rigorous evaluations and systematicreviews will be an important advocacy tool.
One of the major claims of the evidence-based approach is that it provides objective
data about the effectiveness of interventions. By eliminating or restricting possibilitiesfor subjective decision making and practitioner bias, the implicit promise of evidence-based practice is that it will result in greater fairness and reduce potentially discriminatoryvariations in practice. At the population level, ﬁndings from the evidence-based enterprisewill be used to insure an effective distribution of services and greater overall equity. Inthis way, the use of evidence-based guidelines will promote equitable treatment for allthose in need [33]. Not only will evidence supporting effective psychiatric interventionspromote greater conﬁdence among funders and other stakeholders, it will be instrumentalin diverting program and research funding to mental health [34], making it increasinglydifﬁcult for future decision-makers to defend policies and practices that systematicallydisadvantage people with a mental illness or that are incommensurate with the burden ofsuffering caused by mental disorders.
While it is difﬁcult to quarrel with the promise of evidence-based practice, its application
has not gone without deep debate and criticism. A closer look at the nature of the evidence re-quired, and the methods currently favored to generate it, yield several signiﬁcant challengesfor mental health researchers and advocates who would view evidence-based practice as animportant anti-stigma tool. This is primarily because the evidence-based paradigm largelyignores the social and cultural forces that inﬂuence both the production of evidence and thedistribution of health resources – failing to recognize that these processes may themselvesbe subject to signiﬁcant bias.
It is now well recognized that the pervasive stigma associated with all aspects of mental
illness has slowed the production of evidence in this ﬁeld relative to other equally disablingconditions [35]. With fewer prospects for signiﬁcant sustained funding, researchers gravitateto other areas, leaving the ﬁeld with a lack of capacity to produce high-quality evidence. Evenwithin psychiatry, there is a ‘source of funding bias’ as pharmaceutical companies provide amajor share of funding and produce the lion’s share of research data [36]. Currently, there isno equivalent, countervailing funding source for non-pharmaceutical research, particularlyin the areas of social psychiatry or public mental health, and it is difﬁcult to see how evidence-based practice will redress these historical imbalances. Developing a strong evidence baseto support best practices in the delivery of high-quality mental health care – including bestpractices in anti-stigma programming – must remain a top priority.
A second challenge posed by the current evidence-based paradigm is that the rules gov-
erning the production of evidence favor interventions that can be studied using double-blind,randomized controlled trials and summarized using systematic reviews and meta-analyses.Because stigma interventions are often not oriented toward individual-level treatments andbiological determinants of disease, they are rarely amenable to experimental designs. Oftentargeting entire nations, populations or communities, anti-stigma interventions are moreappropriately studied using quasi-experimental and observational study designs. In somecases, speciﬁc legal or policy frameworks or organizational processes are the targets forchange, which are best studied using case studies and other qualitative designs. A searchof online databases (OVID Medline, PsychInfo, Healthstar) using controlled vocabularyterms (MeSH headings) such as ‘Mental disorder’ and ‘Randomized controlled trial’ com-bined with keywords such as ‘stigma’ and ‘prejudice’ yields only a smattering of controlledanti-stigma intervention studies (three from the US [37–39], one from Germany [40] and

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140 BUILDING AN EVIDENCE BASE FOR ANTI-STIGMA PROGRAMMING
two from Australia [41, 42]; which is an insufﬁcient evidence base to support anti-stigma
programming.
Findings from quasi-experimental and qualitative approaches are currently excluded from
traditional systematic reviews with the result that anti-stigma (and other public-health-oriented mental health research) will be systematically disadvantaged in the evidence pro-duction process as data from these studies will be considered of lower quality. Policy makerswill be hesitant to support interventions based on inadequate evidence. However, there aremany challenges inherent in combining the results of studies which have used diverse studydesigns [43]. Recognition of these problems has prompted calls for broader interpretationsof ‘evidence’ including attempts to develop reporting standards for non-experimental studiesso that their results can be systematically summarized to guide policy development [44–46].The TREND statement, for example, recognizes that public health decisions will requireevidence from non-randomized studies and provides a template to promote the ‘transpar-ent reporting of evaluations with non-randomized designs” [45]. The MOOSE guidelines(meta-analyses of observational studies in epidemiology) provide a systematic process forcombining and reporting the results from multiple studies so that ﬁndings may be system-atically combined to judge effectiveness [46]. Although these guidelines are relatively newand remain works in progress, anti-stigma researchers (and the ﬁeld) would beneﬁt fromtheir widespread use.
Building better practices through theory-based evaluation
The complexities of the evidence based paradigm for anti-stigma programming notwith-standing, the allure of building better practices using systematically collected data andcareful reﬂection remains. From a public health perspective, this means identifying theprinciples and procedures involved in successful anti-stigma programming in such a waythat they can be meaningfully tested using a variety of research methods, and if found tobe effective, widely disseminated. It does the ﬁeld little practical good to know that giftedanti-stigma advocates can achieve good results locally; what is critical is that these inter-ventions can be clearly speciﬁed and taught [47]. From this perspective, understanding whya program works, or doesn’t work, is as important as demonstrating that it produces change.Thus, a key element in building better practices is building generalizable theories of change.
Theory-based evaluation challenges program developers and evaluators to clearly articu-
late the assumptions underlying the intervention about why the intervention is likely to work,then link program activities to these in explicit and logical ways. The aim of the evaluationis then to assess which assumptions hold, which break down and why, making it possibleto determine which of the several theories underlying a program are best supported by theevidence. Theory-based evaluation asks practitioners to make their program assumptionsexplicit, link these to available knowledge, and achieve some consensus on what they aretrying to do and why. Attention and resources may then be concentrated on the key aspectsof the program. Finally, results from theory-based evaluation facilitates the accumulationof knowledge of best practices across programs into a broader theoretical base. The resultsfrom evaluations that test out the theoretical assumptions underlying program delivery areoften more policy-relevant because they contribute to generalizable knowledge. Programsthat appear to violate well-tested assumptions will then receive little support [48].
At a minimum, a theory of change should articulate the long-term program outcome(s)
and the set of necessary and sufﬁcient preconditions (or short- and medium-term outcomes)

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BUILDING BETTER PRACTICES THROUGH THEORY-BASED EVALUATION 141
that need to be attained in order for the program to have the desired effect. Second, the
assumptions that connect the preconditions for goal attainment and the long-term outcomesmust be speciﬁed and, wherever possible, available research used to pre-test their plausibil-ity. It is also useful to articulate the environmental constraints and barriers that may hinder orpromote progress. Next, the set of interventions that are expected to bring about the changemust be clearly speciﬁed. Finally, a set of performance indicators and thresholds of successmust be articulated that outline the amount of change that must occur for a particular targetpopulation, over a speciﬁc time period, for the program to be declared successful [49].
Creating theories of change for complex, community-based anti-stigma programs will be
a daunting task, particularly as there is little empirical evidence to draw on to support causalpathways or set plausible thresholds for success. It is not unusual for anti-stigma programsto be complex, working across several systems or sectors to bring about community-widechange (such as improvements in public attitudes toward people with a mental illness). Amajor assumption underlying these efforts is that changes at the level of the communitywill result in improvements in the circumstances of people with a mental illness, typicallythrough some unspeciﬁed ‘trickle-down’ effect. Little is yet known about which componentsof the wider community are amenable to change, or the speciﬁc pathways through whichcommunity-level changes result in improvements in individual outcomes. There are alsomultiple contextual issues that can undermine speciﬁc anti-stigma efforts, such as mediareporting of incidents involving someone with a mental illness. The global nature of thenews and entertainment media means that it is virtually impossible to stem the ﬂow ofcountervailing information and lay theories of mental illness.
To create plausible theories of change, anti-stigma programmers will confront difﬁcult
issues pertaining to the relationship between factual knowledge, attitude changes and dis-criminatory behaviors such as the extent to which social marketing campaigns can beexpected to alter the nature of deeply entrenched discriminatory relationships experiencedby people with a mental illness by increasing knowledge about mental illness or debunkinga particular myth or stereotype. Secondly, because anti-stigma programs are often fuelledby the enthusiasm of volunteers and advocates, it can be difﬁcult to curb the desire to ‘do’long enough to develop a plausible theory of change and consider the evidence in support ofthe program’s logic model. Having a clearly articulated program development process, suchas the one articulated by the World Psychiatric Association’s Global Anti-Stigma program,can channel energies into planning. Sites participating in the Global Anti-Stigma networkmust agree to develop a proposal with clearly articulated goals and objectives as well asfollow a development, implementation and evaluation process that takes 18–24 months tocomplete [35].
Program developers and evaluators are increasingly using program logic models to help
create testable theories of change. The logic model is used to link the program’s resourcesto program activities, and the outcomes to be achieved. It is the road map that spells out howthe program produces results. The process of developing a logic model typically involvesmultiple program stakeholders who work together to understand the underlying rationalefor the program. Using available scientiﬁc evidence and logic, they articulate how and whya particular intervention will work; what series of steps needs to be implemented to meetshort-, intermediate- and long-term objectives; how the objectives interrelate to producean overall effect; and the broad conditions under which success is most likely. Building aprogram logic model requires clarity of thinking that can highlight areas where assumptionsare tenuous, where service links are weak or missing or the elements in the broader social

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142 BUILDING AN EVIDENCE BASE FOR ANTI-STIGMA PROGRAMMING
environment that need to be managed (if possible) to facilitate the program’s success. The
model is a focal point for discussion and consensus, and provides program staff with animportant tool for describing their program to others. Most importantly, from an evaluationperspective, a logic model articulates the program’s theory of change and highlights keyprocess and outcomes that then become the focus of measurement and evaluation [50].
Ultimately, building better practices in anti-stigma programming will depend upon bridg-
ing the gap that often exists between the scientiﬁc and practitioner communities – not onlyfor developing plausible program theories of change, or for evaluating program effects, butfor insuring that these results become part of the body of ‘best practice’ evidence. Far toooften, local programs are evaluated and found to be successful, only to have these results gono further than an agency annual report where they remain largely inaccessible to evidence-based reviews. A ﬁrm commitment to publish results – whether good, bad or ugly – willfoster strategic alliances between anti-stigma programmers and the research communityand enlarge the scope of evidence available to inform public policy.
Conclusions
Evidence-rich areas stand to gain the most in an evidence-based world. When the opportunityto produce evidence is limited, policy makers will continue to be swayed by public opinionfavoring services that are more popular; particularly if these also appear to be scientiﬁcallycredible [29]. Unfortunately, the evidence base required to support the expansion of stigmareduction initiatives remains under-developed. Though a number of approaches appearpromising, position papers and systematic reviews are lacking. Clear demonstrations thatanti-stigma programs are effective in reducing social inequities experienced by people witha mental illness are not yet available, and it is not yet possible to speak authoritativelyabout ‘best practices’ in the ﬁeld [24]. Despite increasing public health recognition of theimportance of stigma reduction, in the current climate of evidence-based care, anti-stigmainterventions are at a signiﬁcant disadvantage in terms of both sustaining policy attentionand acquiring funding support.
Researchers interested in developing an evidence base to support anti-stigma interven-
tions face a number of structural challenges beyond the effects of historical inequities thathave undermined population-based mental health and social psychiatric research. The cur-rent evidence-based paradigm places a premium on data from randomized controlled trialsand systematic summaries of these. Similar to many public-health-oriented programs, anti-stigma interventions are often not amenable to experimental approaches. Few randomizedcontrolled trials exist and data from quasi-experimental studies remain outside of the cur-rent standard of ‘evidence’. While there is increasing recognition that policy makers wouldbeneﬁt from a broader array of evidence – that many policy questions are too complex to beadequately studied using conventional randomized controlled trials – there are yet no widelyaccepted standards for standardized reporting observational studies, or for combining resultsfrom different and potentially disparate study designs, into systematic reviews to informpolicy decisions. In building a stronger evidence base to support anti-stigma programming,these undoubtedly will stand as our greatest challenges. Anti-stigma programs can confrontthese challenges by ensuring that a steady supply of credible evaluation research reachesthe scientiﬁc and policy literature – research that is focused on enlarging our understandingof what works, when, for whom, and why.

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9Other people
stigmatize . . . but, what aboutus? Attitudes of mental healthprofessionals towards patientswith schizophrenia
Alp¨Uc¸ok
Professor, Istanbul Faculty of Medicine, Department of Psychiatry, Istanbul University,
Istanbul, Turkey
In every layer of society, stigma affects the patient with mental illness and people close to
the patient, at least as much as the illness. Patients with schizophrenia are the ones mostaffected by stigmatization. This situation is the case in many countries without regard toculture or geography. In society, the attitude towards patients with schizophrenia is worsethan to those with depression [1, 2]. As stigma makes daily life more difﬁcult for the patientwith schizophrenia, the fear of labelling makes it more difﬁcult for an ill person to seek helpfrom professionals. We always complain that people ﬁnd it hard to come to professionalsbecause psychiatric clinics are associated with ‘madness’. Then, let us ask ourselves, how isthe situation on the ‘inside’? Stigma related to mental illness is commonly attributed to theattitudes of the media or the mental health illiteracy of people. If mental health professionalshave stigmatizing beliefs or behaviours, can we explain it by lack of knowledge, or lack ofprevious contact with a mentally ill person? The aim of this chapter is to review studies onthe attitudes of psychiatrists, medical specialists outside of psychiatry, general practitioners,nurses, psychologists, staff and students towards schizophrenia.
General characteristics of the studies
Studies about attitudes of mental health professionals toward people with mental illnessesvary in terms of their target populaton, target illness and methodology. Some of them werecarried out by face-to-face interviews while letters, e-mails or telephone calls were used inothers. These studies are limited by the tendency to include cooperative respondents (vol-unteer bias). As response rates are relatively low, generalizability of the ﬁndings is limited.Moreover, the answers given may not assess actual behaviour, but should be consideredmore of a proxy measure of intended behaviour. Most of the studies we reviewed focused
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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148 OTHER PEOPLE STIGMATIZE . . . BUT, WHAT ABOUT US?
on either stereotypes which also commonly held by lay people, and/or feelings about social
distance in mental health professionals. These two aspects of stigma have been questionedeither directly by using questionaires or by means of case vignettes. Vignettes have beenused since 1955 in the study of stigma of mental illness. Although the vignette approachhas a lot of advantages, it is important to recognize that they are hypothetical and abstractedfrom ‘real-life’ experience. Moreover, the respondent is not in the presence of a real person,is not gleaning information from appearance and other non-verbal clues, and cannot as-sess the described person’s responses to initial gestures that might affect reactions in ‘real’situations [3]. Using a vignette to understand whether the respondents can differentiate apatient from a healthy person has a limited value when the target people are mental healthprofessionals or students. Moreover, Nordt et al. [4] recently reported that surprisingly a
quarter of the psychiatists have described a healthy person in vignette as a patient withmental illness (!).
As the majority of the questionaires were developed by the reserchers themselves it is
not easy to compare the results across the studies. A large majority of the studies have beenfocused on schizophrenia and mood disorders. Some studies evaluated stigma related to oneof these two disorders, while some others compared them. Findings of the studies seem tobe affected by the type of facilities where the target mental health staff work. Stigma relatedto mental illness seems lower in those who work in community health services comparedto those who work in ‘revolving door’ units. The most common locations where thesestudies have been conducted are in Europe and North America. However, there are somestudies from eastern Asia and Middle Eastern countries. Some of the studies focused onspeciﬁc professional groups like nurses or general practitioners, and some others comparethe attitudes of different groups of professionals or compare professionals to lay people(see Table 9.1).
Table 9.1 Number and percentage of general practitioners whose answer is ‘I agree’ to items
related with attitudes towards schizophrenia
Pre-test Post-test
(n=106) (%) ( n=54) (%) p
1. Mentally ill can work 88 (83) 47 (87) n.s.
2. Would oppose if one of his/her relatives would 66 (64) 35 (64.9) n.s.
like to marry someone with schizophrenia
3. Mentally ill could be recognized by his/her 39 (37.5) 14 (25.9) 0.01
appearence
4. Schizophrenic patients are dangerous 29 (27.6) 11 (20.3) n.s.5. Would not like to have mentally ill neighbour 64 (62.1) 25 (46.2) n.s.6. Schizophrenic patients are untrustworthy 47 (46) 15 (27.7) 0.027. Schizophrenic patients could harm children 43 (41.3) 11 (20.3) 0.058. Mentally ill should be kept in hospitals 15 (14.7) 4 (7.4) n.s.9. Is worried or concerned about examining 86 (83.5) 37 (68.5) n.s.
mentally ill patients
10. Would be treated in the appropriate department 85 (81.7) 44 (81.4) n.s.
of the general hospital
11. Schizophrenia could be treated 73 (68.9 45 (83.3) 0.00612. Mentally ill could not comprehend nor apply 34 (32.4) 8 (14.8) 0.007
suggested treatment
13. Schizophrenia has chance of recovery 71 (67) 39 (72.2) n.s.

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ATTITUDES OF PSYCHIATRISTS TOWARDS SCHIZOPHRENIA 149
Attitudes of psychiatrists towards schizophrenia
The stigma of mental illness also affects both mental health professionals and institutions.
On the other hand, poor attitudes and behaviour of some mental health professionals towardsindividuals with mental illness and their families may in turn contribute to the poor publicimage of our profession and the stigma related to mental illness [5]. Ironically, these negativeattitudes interfere with their own help-seeking behaviour for their personal problems [6]. Ina recent paper, Sartorius [7] emphasized that psychiatrists should revise their own behaviourin order to convince other people that most people with mental illness retain many of theircapacities and that their rights are often not respected. The attitude of psychiatrists playsa key role since it also affects the other members of the team, residents and/or studentsthey have the responsibiity to train. This negative attitude varies from underestimating theeffectiveness of psychosocial treatments to failing to inform the patients and their familiesabout diagnoses [8].
Link et al. [3] stated that out of 109 empirical studies between 1995 and 2003, they
found 20 studies focused on professional groups (e.g. mental health professionals, generalprctitioners, medical students). We were able to consider some new studies from Japan[9], Australia [2], Singapore [10], Turkey [11, 12], Spain [13] France [14] and Switzer-land [4], which were particularly focused on stigmatizing attitudes of psychiatrists. Al-though there are two studies which reported that psychiatrists’ attitude was signiﬁcantlymore postive than that of the general population [15, 16], the majority of the studiesshowed that mental health professionals had more negative attitudes compared to that of thepublic [2, 10].
The proportion of mental health professionals advising the patients or their families
about a diagnosis of schizophrenia is lower compared to other diagnoses [17]. A study fromSwitzerland [4], reported that only 7.3% of psychiatrists always informed their patientsof the diagnosis of schizophrenia, and 51.9% of them informed on a case-by-case basis.The results also revealed that the Japanese term for schizophrenia inﬂuences a psychia-trist’s decision to inform patients of the diagnosis and that, by changing the term to a lessstigmatized one, the disclosure of information about schizophrenia to patients would bepromoted.
Recently, we delivered questionnaries to psychiatrists assessing their attitudes in different
parts of Turkey [11]. We found that 42.7% of 60 psychiatrists never informed patients of thediagnosis of schizophrenia and 40.7% informed on a case-by-case basis. The proportion iseven higher than for delusional disorder which has a lot of similarities with schizophreniain terms of both symptoms and treatment. The reason why psychiatrists avoid informingthe patients or family members of the diagnosis was the idea that they could not understandthe meaning (32.6%) or that they would drop out from treatment (28.3%). In anotherstudy, the authors came to similar ﬁndings [4] in that 88% of respondents thought the term‘schizophrenia’ was used in a pejorative manner in public. Another group from Turkey [12]reported that 65% of psychiatrists believed that to mention the word ‘schizophrenia’ asdiagnosis was inappropriate in ofﬁcial documents (e.g. expert reports sent to court) while35% of non-psychiatric physicians shared the same opinion.
Bayle et al. [14] from France reported that approximately only one-third of psychiatrists
deemed it appropriate to disclose a diagnosis of schizophrenia and two-thirds declared thatthey disclose it only occasionally. The main reasons for not disclosing the diagnosis were,ﬁrst the ‘reticence to give a diagnosis label’ and secondly ‘the functional incapacity of thepatient to understand the concept’.

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150 OTHER PEOPLE STIGMATIZE . . . BUT, WHAT ABOUT US?
L´opez-Ibor et al. [13] reported that it is not commonplace for psychiatrists to inform
patients with schizophrenia about their diagnosis in Spain; they tend to disguise it underterms such as ‘psychosis’, ‘disorder’ or ‘depression’. More interestingly, the results of asurvey on 42 psychiatrists in Madrid reveal that they blame the patients for issues theyshould address like non-compliance to medication and the management of aggression. Inthis survey, some negative attitudes relating to social distance were reported. For example,77% of the psychiatrists reported that they would not engage in a conversation with someonewith schizophrenia, and 56% of them say they do not want to live in a hostal with someonewith schizophrenia. However, 79% of the respondents reported that they would engage in afriendship with someone with schizophrenia. It seems that psychiatrists’ attitude cannot begeneralized, but differs depending on the context of the contact. Van Dorn et al. [18] reported
that there were no statistically signiﬁcant differences between psychiatrists, patients withschizophrenia, their relatives and members of the general public in the likelihood of violenceor the desire for social distance. They reported that the patients tended to have the mostnegative views of the illness.
The latest study about the attitudes of psychiatrsts is from Switzerland [4]. In this study,
201 psychiatrists answered a telephone survey questioning attitudes about restrictions,stereotypes and social distance. Pychiatrists had signiﬁcantly more negative stereotypesthan psychologists, nurses or the general population. They had greater social distance to-ward the schizophrenia vignette than toward the depression vignette, but psychiatrists’social distance scores for both illnesses did not differ from those of the general public.There was less approval of legal restrictions (voting, driving licences) in the group of psy-chiatrists compared to the general population, but they had a more positive attitude towardcompulsory admission.
The results of the above-mentioned studies demonstrate that it is too simple to assume
that psychiatrists as mental health experts generally have more positive attitudes towardmentally ill people than do the general public.
Attitudes of general practitioners
Although the role of general practitioners in the health care system may vary internationally,they have an important role in the treatment of patients with an established diagnosis ofschizophrenia as well as in the identiﬁcation of people in the early stages of psychosis andreferring them to psychiatrists. This role is more crucial in countries where the number ofpsychiatrists is insufﬁcient. However, stigma was found to be barrier for psychiatric referralsby general practitioners [19].
The results of a recent study by Simon et al. [20], showed that general practitioners in
Switzerland are involved in the treatment of approximately a quarter of patients with chronicschizophrenia. A total of 1089 general practitioners’ responses to this postal survey suggestthat their knowledge about the symptoms and the course of illness is enough, but they havesome difﬁculties regarding treatment.
In a recent study in Turkey, 40% of the general practitioners reported that they were
unable to make clinical decisions on patients with schizophrenia. On the other hand, despitetheir reservations about following up chronically mentally ill patients, general practitionerswere willing to participate in training opportunities concerning schizophrenia [21]. Twenty-nine per cent of participants indicated that they had a positive attitude towards treatmentoutcomes of those patients with schizophrenia that they were treating, but 18% had anegative view of such effort and responded that these patients would not be able to recover

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MEDICAL STUDENTS 151
Table 9.2 Target populations of some recent studies focused on stigma in mental health
professionals
Nurses and Medical General
Psychiatrists GPs students students Staff population
Grausgruber et al. (2007) [46] ×× ×
Nordt et al. (2006) [4] ×× ×
Kingdon et al. (2004) [15] ×
Lauber et al. (2004) [52] ×
Mas and Hatim (2002) [36] ×
¨Uc¸oket al. (2004) [11] ×
¨Uc¸oket al. (2006) [22] ×
Aydın et al. (2003) [23] ××
Onoet al. (1999) [9] ×
Llerena et al. (2002) [40] ××
Yildiz et al. (2003) [21] ×
Altindag et al. (2006) [27] ×
Ayet al. (2006) [35] ×
Fogel et al. (2006) [6] ×
Van Dorn et al. (2005) [18] ××
Reddy et al. (2005) [37] ×
Tayet al. (2004) [45] ×
from schizophrenia. Recently, we studied the attitudes of general practitioners in two cities
[22]. The study was a pre-test-post-test design, and 106 general practitioners from 71 healthinstitutions responded to the questionnaire. In comparison to the earlier studies in Turkeywith the lay public [1], and medical staff’ attitudes [23], we found that the attitudes of generalpractitioners were slightly more negative than those of the public. Twenty-seven per cent ofthe lay public described the patients with schizophrenia as dangerous compared with 27.7%among general practitioners. The views of general practitioners show some similarities tothe lay public view on schizophrenia particularly in issues of social context. In general, GPsresponded more negatively to the questions on their attitudes in social settings than thosewhich concentrated on their views within their professional roles (Table 9.2). This mightbe seen as a buffering effect of the professional role within the clinical context.
Medical students
Not surprisingly, ‘tomorrow’s doctors’ share the same attitudes as psychatrists and thegeneral population towards the mentally ill. The stigma of using mental health serviceshits the medical students themselves. The care of medical students as patients is complexbecause of problems associated with stigma and the dual role of trainee and patient inmedical school [24]. Givens and Tija [25] reported that only 22% of the depressed medicalstudents were using mental health services, and stigma was one of the reasons (30%).
In a recent study, Akdede et al. [26] studied the attitudes of young people (mostly medical
students) toward psychotic disorders. In the ﬁrst phase of the study, a case vignette abouta young person who began to show psychotic symptoms was given to students, and theiropinions were asked. At the second phase, after the diagnosis of the patient was given asschizophrenia, the same questionnaire was repeated. They found that the positive attitude

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152 OTHER PEOPLE STIGMATIZE . . . BUT, WHAT ABOUT US?
of the whole group decreased meaningfully after they learned the diagnosis of the patient.
There was no difference between the medical students and others.
Recently, we evaluated attitudes of ﬁrst-year medical students’ attitudes towards
schizophrenia in Urfa, Turkey [27]. Before the anti stigma training programme, 68% ofthem believed that ‘people with schizophrenia are violent’, and 84% of them believedthat ‘persons with schizophrenia cannot make correct decisions about their own lives’.The effects of anti stigma education on these attitudes will be discussed later in thispaper.
There have been some studies that have investigated the effects of mental illness education
in medical students [28–30]. In Turkey, Yanik et al. [31] in a cross-sectional study surveyed
the effects of medical education on attitudes towards mental illness. These authors concludedthat the attitudes of medical students did not change favourably as they moved along intheir medical education. Another study using case vignettes in Turkey reached a similarconclusion about patients with depression [32]. In a study from Samsun in Turkey, attitudesof 172 intern doctors attitudes were evaluated before and after a psychiatry training period.The researchers found no difference in attitudes between the beginning and the end ofthe training period [33]. In another study by Arkar and Eker [34], the authors found thatafter psychiatric training, there was no difference in social rejection toward patients withschizophrenia among ﬁfth-year medical students, while there was a positive change towarddepression. However, other studies have found more favourable results [28–30]. The largeststudy in Turkey was carried out among 452 students from all three public medical schoolsin Istanbul [35]. The scores for depression and schizophrenia scales among ﬁnal yearstudents were better compared with those of the second-years; however, the proportion ofstudents who did not perceive schizophrenia as ‘temporary’ and ‘curable’ and the perceivedlikelihood of dangerousness for schizophrenia were higher among the last-year studentscompared with the second-years. The improvement in the attitude score between the secondand the sixth years is considered a result of the students’ contact and interaction with personshaving mental disorders throughout their medical education. In a study with a similardesign, a vignette and two dependent measures (social distance scale and dangerousnessscale) were used to assess the attitudes of 108 ﬁrst-year and 85 ﬁnal-year medical studentsin Malaysia [36]. The ﬁrst-year students did not have any prior psychiatric training. Theﬁnal-year students who had knowledge and had had contact were less stigmatizing towardmentally ill patients. There were no signiﬁcant differences in the attitudes towards mentallyill patient among the ﬁrst-year students regardless of whether they had had previous contactwith persons suffering from mental illness or not. The authors concluded that knowledgeseems to have the effect of inculcating greater tolerance of mental illness. Contact by itself isnot sufﬁcient for attitude changes. In another study from Malaysia [37], it has been reportedthat there was a signiﬁcant increase in the mean scores on both Attitudes towards MentalIllness and Attitudes towards Psychiatry scales following an eight-week psychiatric rotationamong female medical students, but not among male students. Similarly, in Taiwan a studyassessing medical students’ change in attitude found a signiﬁcant change after psychiatricinternship [38]. Economou et al. have studied the effect of the psychiatric rotations on the
attitudes of 157 medical students in their sixth year of study in Greece [39]. Results indicatedthat students’ psychiatric training and contact with patients in psychiatric hospitals leadto the strengthening of students’ negative beliefs concerning people with schizophrenia.These contradictory results imply that content and targets of psychiatric education andthe conditions of psychiatric clinics may have an effect on the impressions of medicalstudents.

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PSYCHOLOGISTS, NURSES AND OTHER STAFF 153
Psychologists, nurses and other staff
Patients, particularly inpatients, have more contact with nurses and staff than with doctors.
So, attitudes of these groups of mental health professionals have an impact on patients.Llerena et al. [40] from Spain, surveyed students of medicine and nursing during 2000
about their general knowledge of schizophrenia. Findings from these authors indicate thattheir subjects had a high awareness of mental illness, its onset, associated risk factors andmanifestations and treatment; these authors did not ﬁnd any signiﬁcant difference betweenthe two goups. On the other hand, both groups thought that people with schizophrenia neverrecover (50%), that they were or could be dangerous or violent (78%), and rejected or wereambivalent about whether to accept them in a social situation (40%). In addition, they didnot feel they had enough information about schizophrenia (95%) and they did not knowsomeone with this disorder (75%). Authors commented their ﬁndings as paradoxical andconcluded that symptoms associated with the acute phase of schizophrenia create morestigma than the label of schizophrenia alone. Similarly, Ozyigit et al. [41] reported that
while both nurses and nursing students have enough knowledge about the aetiology andclinical features of schizophrenia they had negative attitudes about social distance, likemarrying or working in the same ofﬁce with patients. However, compared to students,nurses reported lower social distance, and being acquainted with a mentally ill person wasfound to be related to lower social distance in this study. In a recent vignette study, therole of the psychiatric mental health nursing class and rotation were identiﬁed as improvingstigmatizing attitudes and increasing help-seeking among nursing students in the UnitedStates [42]. However, in another study from the USA, researchers concluded that healtheducation and experience did not signiﬁcantly affect attitudes towards the mentally ill.Nursing students who had had a friend who was mentally ill prior to their school trainingshowed a decrease in stigmatizing attitudes after being exposed to health education andexperience whereas other students showed an increase in this study [43]. However, this factorwas found unimportant in a study on students of nursing in Turkey [44]. The proportionof students who deﬁned schizophrenia as a ‘weakness of personality’ was found to belower in students with a personal history of psychiatric treatment in this study. Those whocompleted psychiatric training in a mental hospital were found to hold more pessimisticviews about the treatability and outcome of schizophrenia, and also had more negativebeliefs about ‘dangerousness’ compared to students who did not work in mental hospitals.In another study from Turkey, Aydın et al. [23] reported that attitudes of nurses who work
in psychiatric inpatient units were more positive than non-psychiatric physicians, but worsethan the support staff (e.g. driver, cook) in the same hospital. In contrast to others, theresults of this study suggests a negative correlation between stigmatizing attitudes andeducation.
The ﬁndings of the studies suggest that study conditions affect the attitudes of the nurses.
Tayet al. [45] reported that nurses working in short-stay wards had more positive attitudes
than those working in long-stay wards. Similarly, in a study from Austria, researchersexplained their ﬁndings of positive attitudes among nurses as resulting from characteristicsof conditions of training among the participants [46]. In this study, a large number of staffcame from extramural community-based institutions. They commented that this may haveeliminated the well-known clinical observation bias, namely that staff in clinical servicesoften see patients with a poorer prognosis, including ‘revolving door’ patients. Staff attitudeswere found more positive particularly in items related to aetiology and treatability of illnesscompared to the general public in this study. Again, more than half of the lay respondents

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154 OTHER PEOPLE STIGMATIZE . . . BUT, WHAT ABOUT US?
assumed that patients suffering from schizophrenia were more dangerous than average
people, but only a quarter of the staff supported this belief.
Level of education seems to play a role in the attitudes of nurses and staff. Ucman [47]
reported that mental health staff with a higher level of education had a more positive attitudetoward patients with psychosis. Tay et al. [45] reported that a professional qualiﬁcation of
an advanced diploma in mental health nursing or a nursing degree or having a post-basiccertiﬁcate was found to be related to a more positive attitude. Similarly, education was foundas the only signiﬁcant factor inﬂuencing social distance in staff in the study from Austriamentioned earlier [46].
Possible reasons of negative attitudes
It seems reasonable to explain the stigmatizing attitudes of lay people, police or journalistsby lack of knowledge. Antistigma programmes focus on topics like the contribution of bothbiological and psychosocial factors, the effectiveness of treatment, accurate informationabout violence and mental illness, and myths about mental illness, and they aim at correctingwrong beliefs by substituting ‘true’ ones [48, 49]. On the other hand, as shown in this paper,most of the groups which are the topic of this paper have already got the ‘true’ knowledgeduring their professional education. What are the possible reasons for the negative attitudesof health professionals towards people with schizophrenia?
Corrigan [50, 51] states that protest, education and particularly contact with people with
mental illness are the most effective approaches for diminishing social stigma. However,the ﬁndings of the above-mentioned studies show that ‘classical’ medical education andpersonal contact with a person with schizophrenia in a ‘usual’ psychiatric environment hasno effect on reducing the stigma in health professionals and students. So it is worth having alook at the conditions in which mental health professionals and particularly students comeface to face with patients with schizophrenia.
It has been reported that more knowledge about mental illnesses, especially schizophre-
nia, may increase social distance in lay people [52]. Findings among mental health pro-fessionals support this assumption. It seems that theoretical education is not enough toproduce a more positive attitude and behaviour. The health professionals who approachthe patients as professionally as possible in their white coats in hospital, are ordinarymembers of society as well. We can assume that a training period varying between a fewweeks and a few years is not enough to remove the prejudices which are universal insociety.
Contact with patients plays an important role both in developing and removing stigma.
The personal impressions of health professionals who have worked in psychiatric serviceswith patients with schizophrenia is generally limited to what they saw in inpatient unitswhen they were students. The typical patient with schizophrenia that medical or nursingstudents meet in psychiatric wards is either a person who exhibits bizzare or impulsivebehaviours in the acute phase of the illness or a chronic patient with severe disability in amental hospital. Images absorbed during those short weeks of training in units or hospitals,when put together with the stereotype which is shown frequently in the media and movies[53], easily creates a ‘patient image’ that furthers stigmatization and discrimination.
The general conditions of psychiatric wards also contribute to the stigmatizing attitude
of health professionals. Most psychiatric wards all over the world are far from being atherapeutic milieu even if they are not as bad as shown in movies. Psychiatric wards are inan unlucky situation compared to non-psychiatric inpatient units in terms of availability of

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WHAT IS BEING DONE TO REDUCE THE STIGMA, AND WHAT ELSE CAN BE DONE? 155
leisure activities, psychosocial treatments, rehabilitation facilities and patient load. Patients
have to share their use of beds with other patients because of lack of enough psychiatricbeds, or stay in cage-like beds all day long in some countries. In addition, Corrigan [54]recently pointed out that many psychiatrists and other mental health professionals optout of the public service system which serves people with the most serious psychiatricdisorders in the USA. Salaries and beneﬁts are better in the private health sector, whereproviders are more likely to treat relatively benign illnesses like adjustment disorders andrelational problems. Hence, quality of services for people with serious mental illnesses likeschizophrenia is often inferior to the quality of services for other psychiatric disorders. Asa summary, general conditions in most of the psychiatry clinics are not good enough toremove the ‘lunatic asylum’ image most people have in mind. It seems logical to assumethat this negative image affects the people who work or are being trained in these instutitionsas well.
In the public’s stereotype, schizophrenia is connected to the ideas of a ‘split personality’
or ‘split mind’. Although mental health professionals know this is wrong, we may expectthat the term itself may contribute to negative attitudes. Local terms which are used todeﬁne the illness are sometimes even more disturbing than the word ‘schizophrenia’ insome cultures. ‘Seishin-bunretsu-byou’ (splitting of the mind) in Japan, a general term‘mahalat nefesh’ (disease of the soul) in Hebrew, and jing-shen-fen-lie-zheng (mind-splitdisease) in Chinese, are only some of them [55–58]. Opinions of psychiatrists about keepingor changing the term ‘schizophrenia’ vary in different countries. While both mental healthprofessionals and the patients agreed that a substantial proportion of patients reject thecurrent term, and the patients believed that the alternative term was less stigmatizing,mental health professionals accept the current term compared to patients in Israel [56]. InJapan, ‘togo-shitcho-sho’ (integration ataxic disorder), the alternative Japanese translationof schizophrenia was approved by the Japanese Society of Psychiatry and Neurology in 2002[59]. The renaming was triggered by the request of an advocacy group. In a recent study,it was reported that after the change of name, the majority of psychiatrists (71%) prefer touse the new one; moreover 70% of the psychiatrists, especially the younger ones, informedtheir patients of their diagnosis [60]. However, it is not easy to say that just changing theterm ‘schizophrenia’ to a more acceptable one, will reduce the negative attitudes of mentalhealth professionals toward sufferers of schizophrenia.
What is being done to reduce the stigma, and what else
can be done?
It is obvious that challenging the stigma of schizophrenia is going to require a multi-
dimensional approach. Although it is impossible to consider the mental health professionalsindependent from the community in which they live, something can be done to change thestigmatizing attitudes of this group. The most important thing is to improve the qualityof conditions with which mental health professionals and patients come face to face. Thisdemand , which can be regarded as utopian in most parts of the world, actually means askingthat we change the traditional approach to the patient with severe mental illness.
Another, more realistic, approach is to try to keep the stigma and discrimination to-
wards patients with schizophrenia on the agenda of mental health professionals. The WorldPsychiatric Association started its Global Programme to Reduce the Stigma and Discrimi-nation because of Schizophrenia in 1999. Local projects in the United States, Switzerland,

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156 OTHER PEOPLE STIGMATIZE . . . BUT, WHAT ABOUT US?
Germany, India, Spain, Slovakia, Romania, Brazil, Eygpt, Greece, Morocco, and Turkey
chose general health practitioners as part of their target population in their communities[61]. Organizing meetings to discuss the issue in various congresses of mental health pro-fessionals, at least serves to confront these people with their own attitudes. The increas-ing interest has also stimulated research in this area. Angermayer and Holzinger reportedthat there is currently a boom of stigma research in psychiatry [62]. When ‘stigma’ and‘mental illness’ were entered as key words in Pubmed search, there were 1093 papersabout this topic (until April 2007), and more than half of them were published in the pre-vious ﬁve years. Despite more research we are still far from understanding the stigmaprocess in detail. This, however, is the prerequisite for developing successful anti-stigmainterventions.
Another step to reducing stigma is to discuss the topic with speciﬁc target populations in
smaller-size meetings. The content of these meeting should be tailored for each target group.Regardless of their attitudes, particularly general practitioners, nurses, staff and studentsreport that they are willing to join training programmes in almost all of the studies. Todiscuss the myths related to schizophrenia can be helpful for all mental health professionalsincluding psychiatrists and nurses. It can be helpful to update the basic information aboutthe aetiology or treatment of schizophrenia for target groups whose contact with patientswith schizophrenia is limited, like general practitioners or nursing and medical students. Wepresent technical medical information about schizophrenia whenever we meet to discussthe myths and dynamics of stigma in meetings with general practitioners in Turkey. Wealso distributed the printed material about stigma and schizophrenia prepared by the WPA(V olume II) in these one-session meetings. We found signiﬁcant, positive changes on ﬁveof the sixteen items in the post-test survey when compared to attitudes before training,including items about the treatability of schizophrenia, harmfulness and untrustworthinessof patients [22] (Table 9.2). In another meeting targeting medical students in 2004, inaddition to the above-mentioned agenda, a patient with schizophrenia has spoken to studentsin an interactive manner, and the movie A Beautiful Mind was shown in the ﬁnal part of
the one-day meeting. Students’ attitudes towards people with schizophrenia were assessedbefore and one month after the programme. Favourable attitudinal changes were observedin terms of ‘belief about the aetiology’, ‘social distance to people with schizophrenia’ and‘care and management of people with schizophrenia’. In contrast, no signiﬁcant change wasobserved in the control group [27].
However, most of the above-mentioned efforts are based on one or a few sessions of
intervention. When considering the pervasiveness of stigma because of schizophrenia, itseems crucial to organize such activites on a long-term basis. The WPA’s anti stigma pro-gramme accelerated anti stigma activities targeting mental health professionals as well.If this programme lasts for a long period, it will make these efforts more permanent andeffective.
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27. Altindag, A., Yanik, M., ¨U¸cok, A., Alptekin, K. and Ozkan, M. (2006) Effects of an anti stigma
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ical Neurosciences 60, 283–288.
28. Singh, S.P., Baxter, H., Standen, P. and Duggan C. (1998) Changing the attitudes of ‘tomorrow’s
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Education 32, 115–120.
29. Mino, Y ., Yasuda, N., Kanazawa, S. and Inoue S. (2000) Effects of medical education on attitudes
towards mental illness among medical students: a ﬁve-year follow-up study. Acta Medicana
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30. Mino, Y ., Yasuda, N., Tsuda, T. and Shimodera S. (2001) Effects of a one-hour educational
program on medical students’ attitudes to mental illness. Psychiatry and Clinical Neurosciences
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31. Yanik, M., Simsek, Z., Kati, M. and Nebioglu, M. (2003) Attitudes towards schizophrenia and
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32. Inandı, T., Aydın, N., Turhan, E. and Gultekin, D. (2006) Social distances of medical students
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33. Aker, S., Alptekin, A., Boke, O., D¨ undar, C. and Peksen, Y . (2006) The attitudes of interns
toward psychiatric illnesses and the role of psychiatric training period in changing these attitudes.Proceedings of Third International Conference: Together against Stigma, 5–8 October 2006,Istanbul, Turkey ,p .7 5 .
34. Arkar, H. and Eker, D. (1998) Attitudes towards mental illness: effects of psychiatry rotation. 3P
Journal 6, 263–270 (in Turkish).
35. Ay, P., Save, D. and Fidanoglu, O. (2006) Does stigma concerning mental disorders differ through
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atric Epidemiology 41, 63–67.
36. Mas, A. and Hatim, A. (2002) Stigma in mental illness: attitudes of medical students towards
mental illness. Medical Journal of Malaysia 57, 433–444.
37. Reddy, J.P., Tan, S.M., Azmi, M.T., Shaharom, M.H., Rosdinom, R., Maniam, T., Ruzanna, Z.Z.
and Minas, I.H. (2005) The effect of a clinical posting in psychiatry on the attitudes of medicalstudents towards psychiatry and mental illness in a Malaysian medical school. Annals of Academic
Medicine of Singapore 34, 505–510.
38. Yen, C. and Chong, M. (1998) Attitudes towards mental illness: a study of change during psy-
chiatric internship. Taiwanese Journal of Psychiatry 12, 64–72.
39. Economou, M., Kakavoulis, N., Seryianni, C., Yotis, L., Kolostoumbis, D. and Stefanis, C. (2006)
Exploration of Greek medical students’ beliefs and attitudes towards people with schizophrenia.Proceedings of Third International Conference: Together against Stigma, 5–8 October 2006,Istanbul, Turkey ,p .2 8 .
40. Llerena, A., Caceres, M.C. and Penas-Lledo E.M. (2002) Schizophrenia stigma among medical
and nursing undergraduates. European Psychiatry 17, 298–299.
41. Ozyigit, S., Savas, H., Ersoy, M.A., Yuce, S., Tutkun, H. and Sertbas, G. (2004) Attitudes of
nurses and nursing students towards schizophrenia. New Symposium 42, 105–112 (in Turkish).
42. Halter, M.J. (2004) Stigma and help seeking related to depression: a study of nursing students.
Journal of Psychosocial Nursing and Mental Health Services 42, 42–51.
43. Sodow, D., Ryder, M. and Webster, D. (2003) Is education of health professionals encouraging
stigma towards the mentally ill? Journal of Mental Health 11, 657–665.
44. Taskin, E.O., Ozmen, D., Ozmen, E. and Demet M.M. (2003) Attitudes of school of health
students towards schizophrenia. Archives of Neuropsychiatry 40, 5–12 (in Turkish).
45. Tay, S.E., Pariyasami, Y ., Ravindran, K., Ali, M.I. and Rowsudeen, M.T. (2004) Nurses’attitudes
toward people with mental illnesses in a psychiatric hospital in Singapore. Journal of Psychosocial
Nursing and Mental Health Services 42, 40–47.
46. Grausgruber, A., Meise, U., Katschnig, H., Sch¨ ony, W. and Fleischhacker, W.W. (2007) Patterns of
social distance towards people suffering from schizophrenia in Austria: a comparison between thegeneral public, relatives and mental health staff. Acta Psychiatrica Scandinavica 115, 310–319.
47. Ucman, P. (1983) Attitudes of psychiatric personnel and the therapeutic milieu. Hacettepe Medical
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48. Thompson, A., Stuart, H., Bland, R.C., Arboleda-Fl´ orez, J., Warner, R. and Dickson, R.A. (2002)
Attitudes about schizophrenia from the pilot site of the WPA worldwide campaign against thestigma of schizophrenia. Social Psychiatry and Psychiatric Epidemiology 37, 475–482.
49. Gaebel, W. and Baumann, A.E. (2003) Interventions to reduce the stigma associated with severe
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50. Corrigan, P.W. and Penn, D.L. (1999) Lessons from social psychology on discrediting psychiatric
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51. Corrigan, P.W. (2004) Changing stigma through contact. Advances in Schizophrenia and Clinical
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52. Lauber, C., Nordt, C., Falcato, L. and Rossler, W. (2004) Factors inﬂuencing social distance
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fying gaps in the research. Schizophrenia Bulletin 30, 543–561.
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55. Chung, K.F., Chan, J.H. (2004) Can a less pejorative Chinese translation for schizophrenia reduce
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56. Levav, I., Shemesh, A.A., Kohn, R., Baidani-Auerbach, A., Boni, O., Borenstein, Y ., Dudai, R.,
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58. Hirosawa, M., Shimada, H., Fumimoto, H., Eto, K. and Arai, H. (2002) Response of Japanese
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59. Sato, M. (2006) Renaming schizophrenia. A Japanese perspective. World Psychiatry 5, 53–55.
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61. The World Psychiatric Association. Open the Doors. The Global Programme to Fight the Stigma
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10 Implementing anti stigma
programmes in Boulder,Colorado and Calgary, Alberta
Richard Warner
Mental Health Center of Boulder County, Boulder, CO 80302, USA
Mental health professionals and sociologists focused attention on the problem of the stigma
of mental illness in the 1950s and 1960s when many industrial world countries began toclose psychiatric hospitals and to treat people with serious mental illness in the community.Researchers demonstrated that a high level of stigma existed [1–3] and unsuccessful attemptswere made to reduce it [2]. There is no consensus about whether there has been muchreduction in prejudice since that time [4, 5], but it is clear that stigma [6, 7], discrimination[8] and misconceptions about mental illness [9–13] continue to be very prominent. Citizen-driven ‘not-in-my backyard’ (NIMBY) campaigns continue to present obstacles to theplacement of treatment or residential facilities in local neighbourhoods [14–16]. The USSurgeon-General’s Report in 1999, cited stigma as one of the greatest obstacles to theeffective treatment of mental illness [17].
Happily, in the last decade we have seen an increase in the will to combat the stigma of
serious mental illness in many parts of the world, and the application of a new tool – socialmarketing – to this task. This chapter will describe how local communities can effectivelycombat the stigma of mental illness.
Social marketing
Social marketing campaigns have been used successfully around the world in AIDS preven-tion, reducing infant mortality, family planning, improving nutrition, smoking cessation anda variety of other causes [18]. Carefully designed campaigns can have substantial effects onbehaviour [18]. Effectiveness is increased by ‘audience segmentation’ – partitioning a massaudience into sub-audiences that are relatively homogeneous and devising promotionalstrategies and messages that are relevant and acceptable to those target groups [19].
In developing such campaigns, it is useful to conduct a needs assessment that gathers
information about cultural beliefs, myths and misapprehensions, and the media throughwhich people would want to learn about the topic. The needs-assessment method mayincorporate focus groups, telephone surveys and information from opinion leaders. A
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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162 IMPLEMENTING ANTI STIGMA PROGRAMMES IN BOULDER, COLORADO AND CALGARY, ALBERTA
pre-testing mechanism is then established that allows the promotional strategy to be con-
tinuously reﬁned [18]. Initially, speciﬁc objectives, audiences, messages and media areselected, and an action plan is drawn up. These messages and materials are pre-tested withspeciﬁc audiences and revised. The plan is implemented and, with continuous monitoringof impact, a new campaign plan is developed and constantly reﬁned.
Health promotion campaigns aim to heighten awareness and to provide information; the
former is possible without the latter, but not the reverse. Awareness campaigns need to besupported by an infrastructure that can link people to sources of information and support –for example, a telephone number to call and trained people to respond to the caller. Ideally,the infrastructure should be a central organization with a local network. In the case of tacklingthe stigma of mental illness, a suitable organization would be a consumer advocacy groupsuch as the National Alliance on Mental Illness (NAMI).
Implementing a local anti-stigma programme
The World Psychiatric Association (WPA) Programme to Reduce Stigma and Discrimina-tion because of Schizophrenia, which was launched in the late 1990s [20], has established,to this date, 23 stigma-ﬁghting projects in countries around the world. The author has beeninvolved with the planning team for the global programme and worked closely with two ofthe local project sites, in Calgary, Alberta, Canada and Boulder, Colorado, USA. Much ofthe information in this chapter is taken from the experiences gained in these two sites. How-ever, much more information and experience have been gained from the WPA programmeas a whole. Information about this worldwide programme and materials that are useful toproject organizers can be found at the programme’s website www.openthedoors.com.
The WPA programme has established a simple process (which is available on the website)
for setting up anti-stigma projects in local communities. Using social-marketing principles,the steps in creating a local programme include:
rsetting up a local action committee;
rconducting a local survey of sources of stigma and types of discrimination;
rselecting target groups;
rchoosing messages and media for these target groups;
rtrying out interventions and testing their impact;
rbroadening the scale of the intervention; and
restablishing some permanent changes.
Developing a local action committee
The composition of the action committee is a decisive element in establishing a localproject. The committee members should include knowledgeable representatives of potentialcampaign target groups. The actual target groups to be selected will not be known at thetime the action committee members are chosen, since this decision will be taken by theaction committee itself. The initial planning group that selects action committee members,however, can select people from walks of life that may become target groups, such as: thepolice and judiciary; health service providers; high school students, teachers and school

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INVOLVING CONSUMERS AND FAMILY MEMBERS 163
board members; employers; landlords; newspaper and mass media representatives; and the
clergy. It is important to include people from advocacy groups, such as primary consumergroups or organizations like NAMI (in the US) or Rethink (in the UK). Building an alliancebetween different advocacy groups with a common interest is one of the potential long-term beneﬁts of an anti-stigma campaign. Some of the most valuable members of the actioncommittee will be consumers and their family members.
Action committee members should be people who are committed to the goals of the
campaign and willing to devote substantial effort and time to it. Most of the work of thecampaign will be unpaid volunteer effort performed by action committee members. It isalso valuable to include on the action committee some prominent citizens with local namerecognition (judges, city council members, etc.). When requesting a meeting with, say, theeditorial board of the local newspaper, the presence of someone of prominence in the groupwill increase the interest of the target group members and the impact of the event. Suchprominent individuals may not have much time to commit to the project; if so, they can begiven advisory or afﬁliate status. If possible, a media or public relations expert should beincluded on the action committee. A media professional can help reﬁne messages, designmedia materials and advise on cost-effective media outlets for the target groups in question.
The action committee should not be too small or the links to the community will be too
restricted and the workload on individual members will be too great. Around 10 memberswould be a minimum. As many as 20 members is practicable; a group of this size shouldsplit into smaller task groups to reﬁne the action plans for different target groups.
Effective programme participation
Regular communication with members of the action committee is important to maintaingroup cohesion and commitment. Initial meetings may involve wide-ranging discussionsof relevant issues but, eventually, key target groups will be identiﬁed and speciﬁc objec-tives established. Action committees commonly meet monthly. Minutes are distributed tocommittee members soon after each meeting, and an agenda, sent prior to each meeting,helps focus the discussion and assists participants in preparing for the meeting. Regular at-tendance at meetings is important. The committee will monitor that action steps delegatedto committee members are accomplished. Committee members should understand at theoutset the importance of their individual contributions to the success of the campaign andthe amount of time that is needed to carry out their assignments.
Involving consumers and family members
Involving people with mental illness (referred to as ‘consumers’ or ‘users’) and their familymembers is central to the success of an anti-stigma campaign. A goal of the campaignis to lead members of the community to see people with mental illness as people, likethemselves, who happen to have a disability. Humanizing the condition, in this way, is bestaccomplished by introducing community members to people with mental illness who arewilling to discuss their disabilities. People who know someone with mental illness are lesslikely to hold stigmatizing attitudes [21]. The action committee, therefore, should includeconsumers who can describe, ﬁrst hand, the experience of mental illness and discrimination,and who are willing to speak at press conferences, be members of a consumer speakers’bureau, address the Chamber of Commerce, assist in police training, speak on the radio,attend meetings with the editorial board of the local newspaper, or help in similar ways.

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164 IMPLEMENTING ANTI STIGMA PROGRAMMES IN BOULDER, COLORADO AND CALGARY, ALBERTA
Selecting target groups
It is useful to conduct a simple survey of local consumers, family members and other
concerned ﬁgures, to determine where stigma is seen to be a signiﬁcant problem in thecommunity (for example, emergency rooms, employers, etc.). Using these data, the actioncommittee will select a manageable number of target groups – three is a good number. Itis not advisable to target the entire general population – to do so would be expensive andunlikely to have a measurable impact. The target groups need to be relatively homogeneousand accessible. Landlords, for example, are not a very accessible group in the US, since theydo not meet as a group or use a common media outlet. In countries where most apartmentrenting is done by real-estate agents, however, it might be feasible to target this group.Employers also do not seem to be very accessible, but it may be possible to identify the fewmajor employers who provide most of the employment in a district and to target the humanresource departments of those businesses. High school students are a highly accessiblegroup, as are the police (who receive regular in-service training) and the personnel of majornews media outlets.
Assigning work responsibilities and monitoring progress
The action committee can split into task forces to develop action plans for each target groupselected and report back to the action committee. For each target group the action committeewill develop goals and objectives. These may include, in increasing order of difﬁculty,developing awareness, increasing knowledge, changing attitudes and changing behaviour(e.g. reducing discrimination in housing). For a target group such as high school students,the goals might be to increase awareness about the stigma of mental illness, to increaseknowledge and understanding about schizophrenia, and to reduce stigmatizing attitudes.
To meet these goals, measurable objectives for high school students might include:
rmake a presentation about stigma and schizophrenia to X% of the high school students
in the district; and
rachieve an improvement in knowledge of Y% and a reduction in social distance of Z%
with students who hear the presentation.
Based on these goals and objectives, the action committee or task group can establish some
key messages and determine the media that will be used to put these messages across. Eachmessage should be captured in a single short sentence.
The steps in putting this action plan into effect should be laid out by the action committee,
specifying who will accomplish each step and by what date. For example, committee mem-ber A will develop a ﬂyer for high school art teachers about the art competition by the end ofDecember, and committee member B will organize a consumer speakers’ bureau to addressthe school art classes by the end of January. The action committee will monitor whetherthese steps are accomplished. A simple ‘programme planner’ with such headings as: tar-get group, communication goal, measurable objectives, key messages, media, action steps(task, person, time-line), can be used to track progress. Action steps are updated monthly.
Objectives for each target group should be realistic (e.g. a 10% improvement in social
distance as measured on a pre-/post-test) so that group members are not disappointed bywhat they might otherwise imagine to be small gains. Local media exposure and project

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WORKING WITH SCHOOLS 165
outcome research results are useful in demonstrating the success of the various phases of
the campaign.
Accessing community opinion leaders
A small group of action committee members can meet with an opinion leader, such as thehead of the Chamber of Commerce, or the newspaper editor, or the police chief, to discussthe campaign mission and the ways in which the opinion leader can advance the projectgoals. This consultation can lead to:
rgathering useful information about how to inﬂuence the target group in question;
rsetting up events with, or the dissemination of information to, the target group;
rforging links with other people who do have time and knowledge to devote to thecampaign.
Working with schools
High school students are a popular target group in the WPA global anti-stigma programme,having been selected by projects in Calgary, Alberta, Canada; Kent, UK; Leipzig, Hamburgand Munich, Germany; Innsbruck and Vienna, Austria; Ismailia, Alatrish and Port Said,Egypt; Boulder, Colorado, USA; and Brescia, Italy. The popularity of this target group hasless to do with the likelihood that students will be a source of stigma and more to do withtheir ready accessibility and the opportunity to inﬂuence the attitudes and behaviour of acoming generation.
The task of working with schools is greatly simpliﬁed if a teacher, school board member
and/or pupil is included in the action committee. To gain access to the target group, actioncommittee members can meet with school principals and teachers to promote the concept ofstigma reduction in mental illness as an important component in the acceptance of diversity.Many schools have priorities to provide training in this area. The point can also be madethat mental illness is a sadly neglected area in health education.
Examples of messages that have been used in high school anti-stigma programmes
include:
rNo one is to blame for schizophrenia (a message about causes).
rPeople recover from schizophrenia (a message of hope).
rPeople with schizophrenia are people with schizophrenia (a message of compassion).
rWatch your language. (Don’t use derogatory terms to refer to people with mental
illness. An action message.)
Media that have been used include:
ra speakers’ bureau of people with mental illness, family members and professionals;
rthe WPA global anti-stigma project webpage (www.openthedoors.com) which has
access doors for different types of users: teenagers, health professionals, and consumersand family members;

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166 IMPLEMENTING ANTI STIGMA PROGRAMMES IN BOULDER, COLORADO AND CALGARY, ALBERTA
ra teaching guide on schizophrenia for teachers (such as the one developed for use in
the Calgary project, which is available on the WPA project webpage);
ran art competition for high school students to produce anti-stigma materials, whichhas been used successfully in Calgary, Boulder and elsewhere.
To set up the art competition in Boulder, organizers obtained the approval of school
principals, and the support of the district art teachers. A consumer speakers’ bureau and aproject coordinator with a visual arts background made presentations in art classes. (Thepresenters sometimes used role-playing, in which an interviewer asks questions of a studentwho is playing the role of a person hearing auditory hallucinations, while two other students,with scripts, play the role of his/her voices and speak simultaneously into both of his/herears. The subsequent de-brieﬁng of the student hearing voices reveals to the class some ofthe torment experienced by a person with mental illness.) The presenters announced a juriedcompetition, with money prizes, for students to produce artwork dealing with the issue ofstigma and mental illness. (Winning entries can be viewed at the web site of the MentalHealth Centre of Boulder County, www.mhcbc.org.) Each year that the competition hasbeen run, a public art show with an awards ceremony has been mounted, and the art exhibithas been displayed in participating high schools. After obtaining appropriate permission,winning art has been used in interior bus advertisements. The art show has been repeatedannually.
In Colorado, interior bus advertisements reach a predominantly younger audience. The
Boulder project took advantage of the opportunity for free public transportation interioradvertising to display anti-stigma messages, including one designed around a piece ofstudent art with the statement ‘Sometimes those that are different are the most amazing’.Cinema patrons are also predominantly young people. For this reason, the Boulder projectarranged to display slides promoting three selected anti-stigma messages along with theadvertisements preceding the main feature in two local cinemas (with a total of 16 screens).Exit surveys revealed that this medium was cost-effective. Sixteen per cent of cinemapatrons recalled the content of at least one of the three messages displayed. This meansthat, over the course of three months of displaying the slides, over 10,000 people couldrecall one of the messages two hours after seeing it – costing just pennies per person-message.
The outcomes from high school interventions have been positive throughout the WPA
project. In Calgary, Alberta, substantial improvements in knowledge and attitudes weredemonstrated by pre-/post-testing of students. The proportion of students expressing nosocial distance between themselves and someone with mental illness increased from 16%to 30%. The proportion with a perfect knowledge score increased from 12% to 28% [22]. InG¨utersloh, Germany, the intervention produced a reduction in negative attitudes and preju-
dice [23], and in Vienna, Austria, positive changes in attitudes were evident 3 months afterthe intervention [24]. At three sites in Egypt, test scores of knowledge about schizophreniaand its treatment more than doubled, the proportion of students who regarded someone withschizophrenia as dangerous dropped from 81% to 26%, and the proportion who believedthat someone with schizophrenia would be likely to commit a crime decreased from 56%to 29% [25]. In Leipzig, Germany, scores on attitudes towards someone with schizophre-nia and willingness to enter social relationships with someone with the illness improvedsubstantially over the course of a 3-month follow-up in the intervention group, while thesescores declined slightly in a control group of students [26].

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WORKING WITH THE CRIMINAL JUSTICE SYSTEM 167
Working with the criminal justice system
Many mental health professionals regard criminal justice personnel as under-recognized
partners in the treatment of people with mental illness. In the US, the police bring manypeople who are acutely disturbed into care or a protective setting. Jail ofﬁcers have to arriveat management methods for people suffering from acute psychosis in an environment that istotally unsuited to this task. Judges wrestle with complicated issues around the dispositionof people with mental illness who have committed crimes. Probation ofﬁcers are oftenresponsible for the supervision of mentally ill offenders in the community, without accessto consultation around the probationer’s capacity to respond to usual directives. Yet thereare few examples of programmes that attempt to provide criminal justice personnel withthe education necessary to perform these necessary parts of their job. For this reason, theBoulder anti-stigma project (and other WPA programme sites) selected criminal justicepersonnel as a target group.
With the primary goal of decreasing the number of people with mental illness in jail, the
chief judge of the Boulder County district court organized a task force of heads of criminaljustice elements (sheriff’s department, probation, jail, district attorney’s ofﬁce), and themental health and substance abuse treatment agencies. The task force requested that theBoulder anti-stigma project develop a series of mental health training programmes for thepolice, judges, attorneys and probation ofﬁcers.
Police training
Mental health professionals, consumers and police ofﬁcers collaborated in developing an8-hour pilot training for ofﬁcers in the Boulder City Police Department. The training waspiloted twice, the ﬁrst time with 15 seasoned ofﬁcers and the second time with 15 rookies.Included in the training were lectures on mental illness by psychiatrists, a presentation oninterviewing skills by a senior police ofﬁcer, ﬁrst-hand accounts of the effects of mentalillness by consumers and family members, a role-playing exercise, and a talk on legal issuesby the chief judge.
Applying lessons learned from the feedback and pre-/post-testing from the pilot training,
the project undertook the training of the entire police department in Longmont, a nearby townwith a population of 70,000. To minimize the disruption of police services to the community,the training was delivered as six identical 2-hour training sessions on adult disorders andsix 2-hour sessions on child disorders, at change of shift in the afternoon or evening beforethe ofﬁcers went on duty. The class size ranged from 10 to 30 participants. The presenterswere psychiatrists, consumers and family members employing lectures, videotapes anddiscussion. The content included the features, course, treatment and outcome of psychoticdisorders, common myths about schizophrenia, childhood disorders, and why people withpsychosis should not be kept in jail. The class discussed suicide and suicide attempts, andwhy people with borderline personality disorder are often not admitted to hospital. This lastpoint is an essential topic of discussion with police ofﬁcers who, in any police department,are likely to complain about a patient whom they brought in for mental health evaluationafter a suicide attempt, only to discover, as it is commonly phrased, ‘She got home beforeI did!’ Pre-/post-testing of the Longmont police ofﬁcers was typical of results of similartraining programmes conducted by the Boulder project. There was a 48% improvement inknowledge scores; the proportion of ofﬁcers holding inaccurate beliefs about the causesof schizophrenia fell from 24% to 3%; and the proportion with an incomplete knowledge

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of acceptable grounds for involuntary treatment fell from 52% to 29%. But there was one
misconception that proved unshakable. The proportion of ofﬁcers holding a misconceptionabout the usual behaviour of people with schizophrenia scarcely changed, falling from82% to 71%. That is, after the training, 71% of ofﬁcers still believed one or more of thefollowing statements: people with schizophrenia are (a) always irrational, (b) much morelikely to be violent than the average person, or (c) usually unable to make life decisions.This, despite the fact that the ofﬁcers had all heard a presentation by a quietly eloquent,middle-aged woman with schizophrenia who was working full-time as a university librarysupervisor. As we puzzled over this ﬁnding, we realized that police ofﬁcers are in an unusualsituation. Their encounters with people with psychosis always occur when the person isacutely disturbed; they have little or no opportunity to meet people with schizophrenia whoare working, happily married, or who have been out of hospital for years. We concludedthat police training has to recognize this curious situation and to expose ofﬁcers, even morethan we had done to that point, to people who have recovered from serious mental illnessif it is to effect a signiﬁcant attitudinal change. A model programme using consumers toprovide much of the police ofﬁcer training has been established in the anti-stigma projectin Kent in the UK [27].
To make mental health training available to police and probation ofﬁcers across Colorado,
the Boulder anti-stigma project collaborated with the US Department of Corrections to pro-duce a training manual. This 8-hour training covers child, adult and elderly disorders, suicideand substance abuse, consumer and legal issues and police management techniques, and canbe delivered by mental health professionals with a moderate level of expertise, consumers,family members and senior police ofﬁcers. The manual and accompanying PowerPointpresentation are available from the author at rwarner@mhcbc.org. The legal information isspeciﬁc to the Colorado mental illness statute, but the remainder of the training package issuitable for other North American or European settings.
Training of judges, attorneys, probation ofﬁcers
In Boulder County, the chief judge requested training sessions for all district court judges,and the probation department and many private attorneys asked to attend the training.Psychiatrists, people with mental illness and family members provided four training ses-sions: three on adult disorders and one on child disorders. Topics included schizophre-nia, depression, bipolar disorder, substance abuse, delirium and dementia, developmentaldisabilities, adult and childhood attention deﬁcit disorder, and other childhood disorders.Outcomes were positive. For example, a pre-/post-test revealed that the judges’ knowl-edge of schizophrenia improved from 47% accuracy to 74% accuracy, and some reportedimmediate changes in their sentencing practice for adults and juveniles. Subsequently thejudges requested two more training sessions on juvenile disorders, which were provided by achild psychiatrist.
Working with journalists
The task of working with journalists will be greatly simpliﬁed if a journalist is included in thelocal action committee. It is feasible and productive for members of the action committeeto meet with the editorial board of the local newspaper. This presents an opportunity todescribe the goals and activities of the anti-stigma campaign and to increase the level ofawareness of key staff of the newspaper about stigma and its consequences. For such a

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SETTING UP A CONSUMER SPEAKERS’ BUREAU 169
meeting, it useful to provide a one-page outline of the anti-stigma programme and the ways
in which the newspaper could help realize the goals of the campaign. In Boulder County,meetings with the editorial boards of the two main local newspapers led to:
rthe publication of editorials about stigma or about the campaign;
rinvitations for members of the project to write guest opinions;
rproject members learning what channels to follow to publish messages related tostigma and to the campaign (e.g. press releases and letters to the editor); and
ropportunities to communicate information to journalists about the ways in which thenews media may inadvertently heighten stigma.
In both the Calgary and Boulder projects, journalists were provided with written suggestions
on how to avoid stigmatizing references – for example, routinely associating of mentalillness with violence, or using the term ‘schizophrenic’ to mean ‘contradictory’ or ‘splitpersonality’. Journalists in Boulder County also requested and received a resource list ofconsumers and experts who could be contacted to provide information for a story. Journalistsare often writing to a tight deadline, and complain that they don’t know whom to contactwhen they want to write a story about mental illness. It is useful to create a list of experts,with phone numbers, who can be contacted in such a situation, and to distribute the listto the local newspapers, radio stations and TV news channels. The list should include (a)people with mental illness and their family members (who have consented to be contacted),and (b) professionals. The list can be sorted by category (e.g. schizophrenia, suicide), andshould be updated and redistributed at regular intervals. Even if the journalist cannot ﬁndthe list of potential contacts when needed, it is useful if key people at the mental healthagency or advocacy group have the list to hand, so that they can give names and phonenumbers of useful informants to the reporter. The campaign should attempt to identify localjournalists who are interested in the issue of mental illness and stigma and assist them inwriting human-interest stories on this theme.
Both the projects in Calgary and in Boulder conducted analyses of column-inches of
positive and negative coverage of mental illness in the local newspapers, before and afterthe initiation of the anti-stigma campaign. In neither case was there any demonstrablepositive change. We drew the conclusion that so much of the news coverage in local papersis national in scope (for example, the Uni-bomber and the attempt by an armed man to enterthe US Congress) that these news stories overwhelm any change in local coverage. In bothcases, however, the projects established permanently improved relationships with the localmedia that continue to have ongoing beneﬁts.
Setting up a consumer speakers’ bureau
A speakers’ bureau can be invaluable for addressing school classes, police, organizationsof businesspeople, and similar groups. Commonly a speakers’ bureau will comprise somepeople who have experienced mental illness, family members of mentally ill people and amental health professional. An important function of the mental health professional is toanswer questions of a factual nature (e.g. ‘What causes schizophrenia?’) that a consumermight not be able to answer.

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People with mental illness can react to the stress of public speaking by experiencing an
increase in symptoms shortly after the event. To minimize the likelihood of this reaction:
rconsumers with a good stress-tolerance should be selected;
rconsumers should be gradually introduced to the speaking experience by, ﬁrst,observing, then speaking brieﬂy, until they can participate fully without stress;
rspeakers should be de-briefed after each presentation to see if they found the experiencestressful;
ra substantial number of speakers should be trained so that the demand on any oneperson is not too great.
Consumer speakers will often describe the experience of illness, but their very appearance
as public speakers will demonstrate the reality of recovery. They may describe problemsof stigma and discrimination, but their presence is likely to evince feelings of compassionand an understanding that mental illness is a human problem that can affect anyone andeveryone. They can talk about problems which are of particular interest to the communitygroup to which they are speaking, for example, discrimination in employment, housing andlaw enforcement, but they should address such issues in a non-critical way which will notgenerate defensiveness in the audience.
A study conducted in Innsbruck [28] highlights the beneﬁts of using consumers in ad-
dressing groups about mental illness. In this study, over 100 high school students, in 6 schoolclasses, were assigned to one of two equal-size groups who were addressed on the topicof mental illness. One group was addressed by a psychiatrist and a consumer, the secondby a psychiatrist and a social worker. Signiﬁcant changes in social distance attitudes wereevident in only the group that was addressed by the consumer.
It is important to have a coordinator for the speakers’ bureau who will:
rbe directly accessible to those in the community requesting speakers,
rmaintain a diary of speaking engagements,
rselect and contact speakers for each engagement,
rde-brief speakers after each engagement, and
rask the person inviting the speakers to provide an assessment of the event.
The coordinator could be a consumer, family member, mental health professional or anyone
else who is enthusiastic, well-organized and, preferably, carries a cellphone.
A successful consumer speakers’ bureau, such as the Partnership Programme operated
by the Calgary branch of the Schizophrenia Society, is likely to develop a strong sense ofshared mission. This sense of community can be nurtured and maintained by establishingcontact between all participants through regular meetings, and through celebratory eventssuch as an annual banquet.
Setting up a media watch group
Local and national advocacy groups can lobby the news and entertainment media toexclude negative portrayals of people with schizophrenia. Such groups are known as‘stigma-busters’ or ‘media-watch’ groups. The stigma-busting approach calls upon members

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SETTING UP A MEDIA WATCH GROUP 171
to be alert to stigmatizing messages in any medium and to respond appropriately. At the
local level, an anti-stigma project can establish the media-watch function in a number ofways. They can: (a) inform national media-watch organizations about negative portray-als with a national impact (for example, a two-faced action ﬁgure produced by HasbroToys that portrays an ‘extreme paranoid schizophrenic’ [29]), (b) respond to calls to ac-tion from national advocacy groups, and (c) contact local media outlets about stigmatizingmessages in the local media. National media-watch bodies in the US have become veryeffective.
The National Stigma Clearinghouse, begun in 1990 by the New York State Alliance on
Mental Illness collects examples of negative portrayals of people with mental illness fromacross the United States, from television, advertising, ﬁlms and the print media. Membersof the organization write or phone the responsible journalists, editors or others in the media,explaining why the published material is offensive and stigmatizing, and providing moreaccurate information about mental illness. The group also encourages local organizations totake local action and distributes a monthly newsletter summarizing recent negative mediaportrayals and the actions taken to inform people at the responsible media source. In thisway the group educates other advocates about what kinds of media portrayals to look forand how to correct them [29].
An example of a successful stigma-busting intervention was the response coordinated
by the National Stigma Clearinghouse to the advance publicity for the November 1992issue of Superman comic reporting that the issue would reveal how Superman was to
be killed by ‘an escapee from an interplanetary insane asylum’. The Clearinghouse andother advocacy groups lobbied D.C. Comics, explaining that depicting the killer of thesuperhero as mentally ill would further add to the stereotype of mentally ill people as eviland violent. When the death issue hit the newsstands the killer was no longer described as anescaped mental patient or a ‘cosmic lunatic’, nor depicted wearing remnants of a strait-jacket[29].
The National Alliance on Mental Illness achieved similar success with a coordinated
national response to the TV series Wonderland . In the initial episode of this 1999 TV series,
set in a New York psychiatric hospital, mentally ill people were seen committing numerousviolent acts, such as stabbing a pregnant psychiatrist with a syringe. Following a NAMIappeal disseminated by e-mail to advocacy groups across the nation, a mass mailing byconcerned citizens to the network, the producers and the commercial sponsors led to theshow being pulled from the air after two episodes, despite the fact that 13 shows had alreadybeen ﬁlmed.
Local action can also be effective. In Boulder County, a local newspaper carried an
advertisement depicting a man with bulging eyes and distorted features accompanied by alegend which ran ‘Driven crazy by your cramped housing?’ and inviting readers to contact arental company about relocating. A polite letter to the advertiser from a senior mental healthprofessional on the action committee, with a copy to the editor of the local newspaper, ledto immediate withdrawal of the advertisement and a letter of apology.
A media-watch group does not need to be large or complex. One or two people can be
designated as coordinators. They will establish links, perhaps by e-mail, to a broader groupof interested members of advocacy group members who will immediately report instancesof stigmatizing news reporting or entertainment content, whether they be local or nationalin scope. The coordinators will discuss the issue and devise an appropriate response. Theymay forward items of national scope to a national stigma-busters group or respond directlyto a local newspaper or business.

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Stigma-busting groups have to tread a narrow line between educating the media about
inaccurate, stigmatizing messages, on the one hand, and, on the other, coming across asintolerant nitpickers. The stigma-busters’ response should not be so mild that editors andproducers harbour the misconception that their media content is accurate and harmless,nor so ﬁerce that they generate fears of censorship by a vociferous minority group. Anapproach of gradual escalation has shown itself to be effective. Begin with a polite request,perhaps including a suggestion that the stigmatizing reference must have been inadvertent.A positive response should be rewarded with a letter of thanks from the media-watchgroup. Often those guilty of such an offence are appropriately concerned and may laterbecome supporters of the stigma-watch group. If the offender is unresponsive, increasingpressure can be brought to bear in gradual increments, such as a letter for publication in thelocal newspaper, escalating to consumer boycott of an offending business, if an appropriateresponse is not forthcoming.
Keeping track of resources
An estimate of the total funds likely to be available to the anti-stigma project should bemade early in the project, and the campaign should be designed to ﬁt within these budgetconstraints. For example, pre/post knowledge and attitude surveys of the general populationare expensive. Broad-scale attempts to inﬂuence the general public through television orradio advertising is also very expensive and extremely unlikely to prove effective unlessvery large amounts of money are invested. On the other hand, many effective target groupinterventions, such as police training and presentations to high school students, can be con-ducted and assessed with modest expense. Accurately anticipating the available resourceswill signiﬁcantly inﬂuence the design of the project.
Low-cost media outlets, such as public service announcements in the press, on buses and
on television and radio can be explored. Their value should be estimated in terms of theamount of exposure to be gained. Public service announcements on television, for example,are often aired at times when few people are watching.
The project director or programme treasurer will maintain a balance sheet, and expendi-
tures and revenues entered as they occur. The project balance should be reviewed monthlyby the project director and presented regularly to the action committee.
Planning for sustainability
The campaign cannot run for ever (in fact, a three-year project is a reasonable goal) but somemore permanent structures and partnerships can be developed. Based on the experience inBoulder and Calgary and elsewhere, these might include:
ra change in the local high school health curriculum to include mental illness;
radapting ‘diversity’ education programmes in local high schools to include the men-tally ill with other discriminated groups, such as ethnic and sexual-preference groups;
rthe formation of a consumer speakers’ bureau;
rthe creation of a media-watch group within a local advocacy organization;
rthe establishment of alliances between diverse advocacy groups and agencies with acommon interest in stigma reduction;

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REFERENCES 173
rthe reinforcement of the stigma-ﬁghting mission of established advocacy groups;
ra change in institutional or health-service policy (such as establishing new local or
national emergency-room procedures for the evaluation and treatment of people withmental illness).
If an opportunity presents itself to create a permanent change in the health or science
curriculum of the school district to include serious forms of mental illness, or to inﬂuencethe routine training of police ofﬁcers, these should be grasped eagerly. Such opportunitiesmay develop as project personnel forge enhanced working alliances with school boardmembers, police chiefs and others in key organizations.
The project director should evaluate which components of the campaign will require
ongoing funding (for example, speakers’ fees for consumer speakers, or prizes for an annualart show) and look for ongoing support for these elements. The required support may bequite limited. Local advocacy groups or agencies may be willing to assume the responsibilityfor different components of the project.
Conclusions
To implement an effective local anti-stigma project it is necessary to establish an effectiveaction committee, and it is useful to conduct a survey of perceived stigma. The action com-mittee should select a few homogeneous and accessible target groups, and not aim to impactthe general public. Messages for these target groups and the media to reach them should becarefully selected, tested and reﬁned. Throughout the campaign the organizers should be onthe lookout for valuable changes which can become permanent. If these guidelines arefollowed, the project does not have to cost much.
References
1. Star, S. (1955) in National Association for Mental Health meeting, Chicago, Illinois, 1955.
2. Cumming, E. and Cumming, J. (1957) Closed Ranks: An Experiment in Mental Health Education .
Harvard University Press, Cambridge, MA.
3. Nunally, J.C. (1961) Popular Conceptions of Mental Health: Their Development and Change .
Holt, Rinehart and Winston, New York.
4. D’Arcy, C. and Brockman, J. (1976) Changing public recognition of psychiatric symptoms?
Blackfoot revisited. Journal of Health and Social Behavior 17,302–310.
5. Cockerham, W.C. (1981) Sociology of Mental Disorder. Prentice-Hall, Englewood Cliffs, NJ.
6. Hall, P., Brockington, I.F., Levings, J. and Murphy, C. (1993) A comparison of responses to the
mentally ill in two communities. British Journal of Psychiatry 162, 99–108.
7. Brockington, I.F., Hall, P., Levings, J. and Murphy, C. (1993) The community’s tolerance of the
mentally ill. British Journal of Psychiatry 162, 93–99.
8. Sayce, L. (1998) Stigma, discrimination and social exclusion: What’s in a word? Journal of
Mental Health 7,331–343.
9. O’Grady, T.J. (1996) Public attitudes to mental illness. British Journal of Psychiatry 168, 652.
10. Borenstein, A.B. (1992) Public attitudes towards persons with mental illness. Health Affairs Fall,
186–196.
11. Weiner, B., Perry, R.P. and Magnusson, J. (1988) An attributional analysis of reactions to stigmas.
Journal of Personality and Social Psychology 55,738–748.
12. Schony, W.: personal communication, 1999.13. L´ opez-Ibor, J.J.: personal communication, 1999.
14. Boydall, K.M., Trainor, J.M. and Pierri, A.M. (1989) The effect of group homes for the mentally
ill on residential property values. Hospital and Community Psychiatry 40,957–958.

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15. Robert Wood Johnson Foundation (1990) Public Attitudes toward People with Chronic Mental
Illness. The Robert Wood Johnson Foundation Program on Chronic Mental Illness, New Jersey.
16. Repper, J., Sayce, L., Strong, S., et al. (1997) Tall Stories from the Backyard: A Survey of ‘Nimby’
Opposition to Mental Health Facilities, Experienced by Key Service Providers in England andWales . Mind, London.
17. US Department of Health and Human Services (1999) Mental Health: A Report of the Surgeon
General. US Department of Health and Human Services, Substance Abuse and Mental Health Ser-vices Administration, Center for Mental Health Services, National Institutes of Health, NationalInstitute of Mental Health, Rockville, MD.
18. Rogers, E.M. (1995) Diffusion of Innovations. Free Press, New York.
19. Rogers, E.M. (1996) The ﬁeld of health communication today: an up-to-date report. Journal of
Health Communication 1,15–23.
20. Sartorius, N. (1997) Fighting schizophrenia and its stigma: a new World Psychiatric Association
educational programme. British Journal of Psychiatry 170, 297.
21. Penn, D.L. Guynan, K., Daily, T. et al. Dispelling the stigma of schizophrenia: what sort of
information is best? Schizophrenia Bulletin 20,567–575.
22. Stuart, H. (2002) Stigmatisation: le¸ cons tir´ ees des programmes de r´ eduction. Sant´e Mentale au
Qu´ebec 28,37–53.
23. Gonther, U., Milse, T., K¨ uster, H-W. and B¨ orner, I. (2001) Secondary school students regularly
meet the patients of a psychiatric hospital; does this help alter stereotypes? Presented at theconference Together against Stigma, Leipzig, 2–5 September.
24. Ladinser, E. (2001) Students and community psychiatry: changes in attitudes towards people with
mental illness and community psychiatry from an anti-stigma programme in schools. Presentedat the conference Together against Stigma, Leipzig, 2–5 September.
25. El-Defrawi, M.H., El-Seraﬁ, A. and Ellaban, M. (2001) Medical students’ involvement in health
education about schizophrenia: a campaign in secondary schools in Ismailia, Egypt. Presented atthe conference Together against Stigma, Leipzig, 2–5 September.
26. Schulze, B., Richter-Werling, M., Matschinger, H. and Angermeyer, M.C. (2001) Crazy? So what!
Effects of a school project on students’ attitudes towards people with schizophrenia. Presentedat the conference Together against Stigma, Leipzig, 2–5 September.
27. Pinfold, V . (2001) Working with police to reduce the stigma of mental illness. Presented at the
conference Together against Stigma, Leipzig, 2–5 September.
28. Meise, U., Sulzenbacher, H., Kemmler, G. and De Col, C. (2001) A school programme against
stigmatization of schizophrenia in Austria. Presented at the conference Together against Stigma,Leipzig, 2–5 September.
29. Wahl, O.F. (1995) Media Madness: Public Images of Mental Illness . Rutgers University Press,
New Brunswick, NJ.

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11 Stigma measurement
approaches: conceptualorigins and currentapplications
Lawrence H. Yang1, Bruce G. Link1and Jo C. Phelan2
1Department of Epidemiology, Columbia University, New York, NY 10032, USA
2Department of Sociomedical Sciences, Columbia University, New York, NY 10032, USA
Introduction
The US Surgeon General’s 1999 Report on Mental Health identiﬁes a strong consensus
that “our society no longer can afford to view mental health as separate and unequal togeneral health” (page vii, Executive Summary, [1]). The report goes on to indicate thecentral place that stigma plays in the sustenance of this unequal treatment, such as itseffects in ‘reducing patients’ access to resources and opportunities (e.g. housing, jobs) andleading to low self-esteem, isolation, and hopelessness” (page 6, [1]). In order to address thepernicious outcomes associated with stigma, a diverse set of initiatives focused on combatingstigma has emerged in the United States and globally. The World Health Organization hasimplemented a broad-based campaign to counteract stigma and discrimination due to mentalillness. In September 2001, a broad range of National Institutes of Health partners sponsoredthe ﬁrst international conference focused on stigma and global health. It is thus clear thatthere exists substantial interest in addressing the stigma of mental illness. The effectivenessof any efforts to address stigma, however, will rest on an understanding of the processesstigma implies, the factors that produce and sustain it, and the mechanisms that lead fromstigmatization to its negative outcomes.
Essential to the scientiﬁc understanding of stigma is our capacity to observe and measure
it. We endeavour to advance the measurement of stigma of mental illness through twopapers. In a previous paper entitled “Measuring mental illness stigma” [2], we reviewed123 articles focused on the stigma of mental illness that were published between 1995and June 2003 and examined the measures employed in them. This review enabled us tocharacterize the breadth of methods currently employed in studying stigma, the kinds ofstudy populations that have been assessed, the geographic location of the study sites, andthe coverage of stigma concepts that the investigations achieved. Following this review, wedescribed the content of selected measures, discussed evidence for reliability and validity,and indicated particular strengths or shortcomings of each measure. This previous paper
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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176 STIGMA MEASUREMENT APPROACHES: CONCEPTUAL ORIGINS AND CURRENT APPLICATIONS
also addressed three additional measurement topics: (1) the use of vignettes, (2) the use
of behavioural measures in experimental and non-experimental studies and (3) the use ofqualitative assessment.
While the earlier paper focused more on an empirical examination of the stigma literature,
in the present chapter we provide an in-depth description of the evolution of each majorstigma measurement perspective to achieve several purposes. First, we wish to providereaders a fuller context to understand how each major approach came into being. Second,we trace the development of each perspective to provide examples of how measures werederived from their theoretical origins, and how these measures subsequently were con-structed, piloted and validated using empirically sound strategies. Lastly, we describe thedevelopment of measures from their origins to current usages and adaptations. We do thisin an attempt not only to aid readers in locating current measures, but also to spur furtherinnovation and development within these measurement paradigms. In this vein, we willalso suggest novel adaptations of these stigma approaches derived not only from stigmameasurement in particular, but from other areas of psychological research more generally.
Conceptualizing stigma
As a starting point, we return to the stigma concept and in particular to three inﬂuentialtheoretical frameworks. We do so as a basis for judging whether current measurementcorresponds to the full range of stigma conceptualizations. These three conceptualizationswere all developed by considering not just mental illnesses but multiple circumstances inwhich stigma arises. We believe this enriches the conceptualization of stigma by highlightingimportant components that might otherwise be overlooked. Note that other authors haveoffered conceptual frameworks for stigma [3–5]; hence, none of these conceptualizationsalone should be viewed as deﬁnitive.
Goffman
Goffman [6] is widely cited for his insightful exposition of the stigma concept, and hisformulation continues to be relevant today. A very common deﬁnition cited from Goffmanis that of an “attribute that is deeply discrediting” and that reduces the bearer “from a wholeand usual person to a tainted, discounted one” [6 p. 3]. Elsewhere, Goffman deﬁnes stigma asthe relationship between an “attribute and a stereotype”. Many of Goffman’s ideas have beenapplied to the recent conceptualization and measurement of stigma. His distinctions betweenthe “discredited” and the “discreditable” are evident in subsequent conceptualizations of the“visibility” dimension of stigma [7] and in attention paid to “secrecy” as a potential copingmechanism [8]. Similarly, Goffman’s concepts of the “own” (those similarly stigmatized)and the “wise” (those who know about and accept the stigma) are apparent in efforts tomeasure withdrawal as a stigma coping mechanism [8].
Jones and colleagues’ dimensions of stigma
Following Goffman’s insights, a second conceptual framework was developed by Joneset al. [7]. Jones et al. use the term “mark” to encompass the range of conditions considereddeviant by a society that might initiate stigmatization. Stigma takes place when the marklinks the identiﬁed person via attributional processes to undesirable characteristics that inturn discredit him or her. The mark is thus highlighted as an integral part of the individ-ual’s identity that dominates others’ perceptions. This process then results in barriers in

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CONCEPTUALIZING STIGMA 177
interaction, typically disrupting the observer’s emotions, cognitions and behaviours upon
encountering the stigmatized individual.
Jones et al. identify six separate dimensions of stigma. Concealability is a dimension of a
mark that indicates how detectable the characteristic is to others. Those able to conceal theircondition (such as many people with mental illness) often do so to avoid negative socialconsequences. However, such actions may lead to shame over the undisclosed mark andfear of discovery. Course is a dimension that indicates whether the stigmatizing condition
is reversible over time, with perceptions of irreversibility tending to elicit more negativeattitudes. People’s beliefs about a condition’s future alterability are likely to inﬂuence thedegree of stigma, especially for conditions not visible to the eye (like mental illness) forwhich observable changes are difﬁcult to perceive. Disruptiveness indicates to what degree
a mark strains or obstructs interpersonal interactions.
The dimension of aesthetics reﬂects what is pleasing to one’s perceptions, and concerns
the degree to which a mark elicits disgust. The aesthetic qualities of marked conditions inpart determine subsequent experiences of rejection. Origin refers to how the condition came
into being. One aspect of origin – perceived responsibility for the condition – has been foundto greatly inﬂuence whether others will respond with negative attitudes and/or behaviourtowards the target person. The ﬁnal dimension, peril , refers to perceptions of danger or threat
that the mark induces in others. Threat can either refer to a fear of actual physical danger(e.g., from a communicable disease like leprosy) or exposure to uncomfortable feelings ofvulnerability (e.g., guilt due to watching a disabled person negotiate a ﬂight of stairs). Thesesix dimensions, although described separately, often exert inﬂuence upon one another. Forexample, stigmas that are genetically caused (origin) may tend to be relatively inﬂexible tofuture change (course).
Link and Phelan’s components of stigma
A third conceptualization, provided by Link and Phelan [9], was formulated in responseto recent criticisms of the stigma concept. A major critique of previous formulations ofstigma is that the language used locates “stigma” in the target individual. For example, the“mark” in Jones et al.’s conceptualization refers to an attribute of a person rather than adesignation conferred on the person. Furthermore, stigma research has largely focused onthe cognitive processing of information, and far less on any discrimination a stigmatizedperson may experience, which would place equal attention on the producers of rejection andexclusion.
In an attempt to be attentive to such criticisms, Link and Phelan offer a deﬁnition of stigma
that links interrelated components under a broad umbrella concept. According to Link andPhelan [9 p. 367] stigma occurs, “when elements of labelling, stereotyping, separation,status loss and discrimination co-occur in a power situation that allows them to unfold”.Link and Phelan’s set of stigma components are useful in identifying a possible domain ofcontent for stigma measures. In addition, we expanded this conceptualization to include acomponent of emotional responses [2]. It also should be noted that each component canoccur to a matter of degree; e.g., the linking of labels to a negative stereotype for a particularcondition can be relatively strong or weak.
Distinguishing and labelling differences
The vast majority of human differences (e.g., ﬁnger length) are not considered to be sociallyrelevant. However, certain differences, such as skin colour, are currently awarded a high

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degree of social salience. But both the selection of salient characteristics and the creation
of labels are highly arbitrary. Regarding the latter, consider the degree of oversimpliﬁcationrequired to create the categories of “black” and “white” when there is no clear demarcationon “deﬁning” criteria such as skin colour, parentage or facial characteristics.
Associating differences with negative attributes
In this component, the labelled difference is associated with negative stereotypes. For ex-ample, a person who has been hospitalized for mental illness may be linked to stereotypedbeliefs about people with mental illness being dangerous and unpredictable.
Separating “us” from “them”
A third aspect of the stigma process occurs when social labels connote a separation of “us”from “them”. For example, certain ethnic groups [10] may be considered fundamentallydifferent types of people from “us”. Note that stereotyping and separating work hand inhand – the linking of labels to undesirable attributes becomes the rationale for believingthat negatively labelled persons are fundamentally different.
Emotional responses
Underrepresented in previous formulations of stigma and added recently by Link et al [2]are the emotional responses stigma entails. Emotional responses to stigma may occur inthe stigmatizer (e.g. disgust) and the stigmatized (e.g., shame). The emotions felt by thestigmatizer are likely to be important for at least two reasons. First, an overt emotionalresponse can provide an important indication of a stigmatizer’s response to a person who isstigmatized. For example, a person who manifests anxiety in the presence of a person withmental illness might signal to the person with mental illness that he/she is being perceived asdangerous and/or unpredictable. Second, emotional responses of the stigmatizer may shapesubsequent behaviour toward the stigmatized person or group. Attribution theory and itsapplication to stigmatizing conditions in general [11] and to mental illnesses in particular[12] emphasize the importance of emotional responses in the stigma process. Angermeyerand Matschinger [13] have also studied the stigmatizer’s emotional reactions by employinglarge-scale surveys of the general public to identify the prevalence of emotions associatedwith vignette descriptions of people with mental illness.
From the vantage point of the person who is stigmatized, emotions of shame, embar-
rassment, humiliation, fear, alienation or anger are possible. Scheff [14] has, for example,argued that the emotion of shame is central to stigma. Stigma-related emotions may beparticularly important because they may provide a critical link between stigma experi-ences and psychological outcomes such as self-esteem, mastery orientation and depressivesymptoms [15]. Emotions associated with stigma have been found to be associated withbiological mechanisms that may underlie such a relationship – for example, the emotionaleffects of rejection are found to trigger biological correlates in the brain that signal physi-cal pain [16]. For these reasons, we include emotional responses in the conceptualizationof stigma.
Status loss and discrimination
When people are labelled, set apart and linked to undesirable stereotypes, a rationale is con-structed for devaluing, rejecting and excluding them. The most obvious example of this is

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individual discrimination, such as when labelling and stereotyping leads a person to refuse
to rent an apartment to a person with a mental illness. However, discrimination may also takeplace through more subtle mechanisms. One of these is structural discrimination, in whichinstitutional practices disadvantage stigmatized groups even in the absence of purposefuldiscrimination by individuals. For example, mental illnesses receive less insurance cover-age when compared with physical conditions [17]. Another subtle form of discriminationworks through status loss. Negatively labelled persons become connected to undesirablecharacteristics that reduce the respect accorded them in everyday interactions. Finally, oncecultural stereotypes are in place, they can also have negative consequences that operatethrough the stigmatized person him- or herself via processes speciﬁed in modiﬁed labellingtheory [8], stereotype threat [18] and stigma consciousness [19]. These processes can resultin negative outcomes such as strained social interactions [20], constricted social networks[8], and unemployment and income loss [21, 22].
The dependence of stigma on power
A unique contribution of Link and Phelan’s [9] conceptualization is the idea that stigmadepends on social, economic and political power. Lower-power groups (e.g., psychiatricpatients) may label, stereotype and cognitively separate themselves from higher-powergroups (e.g., psychiatrists), but members of lower-status groups do not have the socialpower to attach serious discriminatory consequences to these cognitions. Thus, it is withinthis context of power that the negative consequences of stigma occur.
Stigma measurement approaches: history and current developments
We now describe each of the major measurement perspectives that have developed to as-sess stigma, beginning with a deﬁnition of its concepts, followed by a history of its earlydevelopment, then concluding with a discussion of its evolution towards present-day use.The review is organized by ﬁrst considering measurement perspectives applicable to: (1)members of the general public followed by (2) consumers of mental health services. Wecategorize the approaches into these two domains because the assumptions of these mea-surement perspectives share commonalities based on their target population. Within eachdomain, we review the measurement perspectives in chronological order of the citationthat marks the measure’s ﬁrst use in studying the stigma of mental illness. We also includeone separate section focused on the use of vignettes due to their prominent use in stigmaresearch.
Stigma measurement approaches applicable to the general public
Social distance
One measurement perspective that has an extensive history of use is that of “social distance”.Measures of social distance seek to assess a respondent’s willingness to engage with a targetperson in relationships that vary in closeness. The idea is to ﬁnd out how close an associationthe respondent will allow with the target person. For example, the original social distancescale developed in 1925 by Bogardus [23] included acceptance to close kinship throughmarriage at one pole and exclusion from the country at the other.
The concept of social distance emerged from the Chicago School of Sociology and its
efforts to understand urban ecology. One of their core propositions was the idea that groups,

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as deﬁned by race/ethnicity and class, competed for desirable space. Within this ecology of
the urban environment, the sentiments of the groups towards one another became a criticalissue, thus creating the concept of “social distance”. Robert Park [24], one of the leadersof the Chicago School, in 1925 deﬁned this as “the grades and degrees of understandingand intimacy which characterize pre-social and social relations generally”. The ﬁrst socialdistance scale was developed by Bogardus [23] and was used to describe social distance byrace/ethnicity. The ﬁrst published use of this scale with mental illnesses occurred in 1957during Cumming and Cumming’s [25] classic effort to change public attitudes. Shortlythereafter, in 1959 Whatley [26] administered an eight-item agree-disagree social distancescale to 2001 persons in 17 counties in Louisiana to assess attitudes towards people withmental illness as a group. To our knowledge, Phillips [27] in 1963 was the ﬁrst to employa social-distance scale in the context of a vignette experiment. His inﬂuential experimentshowed that a person described in a vignette was rejected more strenuously if the help sourceinvolved psychiatric contact (mental hospital, psychiatrist) than if it did not (general practicephysician, clergy or no help-source at all). These earlier studies (e.g., [26, 27]) evaluatedthe scales using Guttman criteria and generally found that social distance ﬁt criteria fora uni-dimensional scale (coefﬁcients of reproducibility of .9 or better). Since these initialstudies, variants of the scale have frequently been used in stigma research and particularlyin combination with vignettes.
Close scrutiny of the literature reveals remarkable variability in the operationalization
of social distance. The speciﬁc format of items employed varies from study to study –response formats are sometimes “yes/no”, other times “agree/disagree”, and still other times“willing/unwilling”. In addition, the chosen target is sometimes “mental patients” (or someother group referent) and at other times an individual described in a vignette. Fortunately, theconcept appears robust, and it is likely true that the above variations are not a major problemin interpreting studies. Still, measurement has evolved, and there are some principles werecommend for this very commonly used measure. First, there is little reason to restrict theformat to a dichotomy. Crocetti and Spiro [28] conducted the ﬁrst study we know of tobegin using a “deﬁnitely willing/probably willing/probably unwilling/deﬁnitely unwilling”response format. Since this study, such an approach has become much more common,perhaps because it allows more variability of response. Further, if the investigator wishes,these response categories can be recoded into dichotomous ‘willing/unwilling’ responsesduring later analyses. One recent study included an “unsure” category as a neutral response[29], an option that future researchers may want to consider. The tendency to providesocially desirable responses is such a substantial problem that allowing respondents toindicate that they are “not sure” allows a less-than-fully-positive response without endorsinga rejecting response. Second, recent social distance scales have addressed a weakness inprevious scales that stems from the hypothetical nature of some of the items. Early scalesincluded items like “would you discourage your children from marrying someone likeX”. The problem is that potential respondents may not have children, rendering questionslike these excessively hypothetical. Because of this, we decided to use social-distanceitems that are potentially relevant to the respondent when we conducted a nationwidestudy of homeless people with mental illnesses [30, 31] and the MacArthur Module ofthe 1996 General Social Survey [32, 33]. For example, the item regarding “discouragingyour children from marrying” was changed to “How willing would you be to have Xmarry into your family” so as to allow people without children or whose children mightalready be married to answer the question without imagining a situation outside their realexperience.

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Semantic differential and related measures
The Semantic Differential is a measurement technique that directly assesses stereotyping-
i.e., the tendency to link a label like “mental patient” with negative characteristics (9). Therespondent is presented with labels and then asked to evaluate the degree to which thoselabels are associated with various characteristics. Speciﬁcally, respondents are asked to ratethe concept on a number of seven-point scales, each bounded by a pair of polar adjectivessuch as “safe– dangerous” and “valuable– worthless.” Respondents are then asked to rate oneor more additional concepts (e.g., “average person” or “me”) using the identical responsescales to provide a point of comparison. Semantic Differential instruments have typicallybeen given as a self-administered measure, but an interview format has also been used [34].See Nunnally [35], Olmsted and Durham [36] and Crisp et al. [34] for sample stimulusconcepts and adjective pairs.
The Semantic Differential was developed in 1957 by Osgood et al. [37] as a general
technique aimed at quantitatively measuring the psychological meaning that concepts havefor people. Through a series of factor analyses of Semantic Differential ratings, Osgoodet al. identiﬁed evaluation (e.g., good–bad), potency (e.g., hard–soft) and oriented activ-ity (e.g., active–passive) as the factors that accounted for the largest amount of variabilityin respondents’ ratings towards a variety of concepts. Nunnally in 1958 [35, 38] appliedthe Semantic Differential to assess public conceptions of people with mental illnessesand the professionals who treat them. Nunnally identiﬁed understandability as an addi-tional factor that was particularly important for judgements of mental illness. To assessevaluations of people with mental illnesses, Nunnally asked respondents to rate conceptsincluding “neurotic woman/man”, “average woman/man”, “insane woman/man”, “mentalpatient”, “psychiatrist”, “old man”, “child”, “me”, “mother” and “father” on 17 scales ofadjective pairs. Subsequent uses of the Semantic Differential with mental illness conceptsinclude a study by Olmsted and Durham [36] in which they compared the responses ofcollege students to seven mental-health and comparison concepts on 12 of Nunnally’s ad-jective pairs. More recently in 2000, Crisp et al. [34] used a similar approach by askingrespondents to characterize seven mental disorders on response scales anchored by shortphrases such as “dangerous to others – not dangerous to others” and “hard to talk to – easy totalk to”.
A variant of the Semantic Differential that has been developed more recently is the Social
Response Questionnaire (SRQ) [39]. The SRQ is similar to the Semantic Differential in thatit provides a stimulus concept that is rated on a set of 32 adjectives. However, the stimulusconcept is an actual individual and is rated by him-herself and by a signiﬁcant other suchas a family member. The SRQ thus assesses different aspects of stereotyping a psychiatricpatient may encounter, including expectations of family or friends and self-stereotyping.Another difference from the Semantic Differential is that respondents are asked to rateadjectives (e.g., weak, reliable) as “like the subject”, “somewhat like the subject” and “notlike the subject” rather than the scales being anchored by opposite adjectives. Adjectiveswere derived from a literature review regarding the images of ‘the sick role’ for peoplewith mental illness. Higher scores indicate greater levels of negative stereotyping by theindividual or by the signiﬁcant other.
One technique related to the Semantic Differential that to our knowledge has not been
applied to the issue of mental illness – the Implicit Association Test (IAT; [40, 41]) – de-serves mention. This approach was designed to measure unconscious prejudice, speciﬁcallythe extent to which individuals implicitly evaluate some groups or concepts as good or bad.

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In one example, the words “African American” and “European American” are paired on a
computer screen with the words “good” and “bad”. For one series of responses, “EuropeanAmerican” and “good” are paired on the left side of the screen, with “African American”and “bad” paired on the right. Then a series of positive and negative words such as “friend”,“pleasure”, “war” and “horrible”, interspersed with photographs of black and white faces,are ﬂashed on the screen one by one, and the respondent must choose as quickly as possiblewhether the word or photograph is associated with the words on the left (“European Amer-ican or good”) or on the right (“African American or bad”). In a second series of responses,“African American” and “good” are paired on the left side of the screen, with “EuropeanAmerican” and “bad” paired on the right. The outcome measure is the speed and accu-racy with which positive words are identiﬁed as being associated with “good” and negativewords with “bad”. If respondents more quickly associate positive words with “good” when“good” is paired with “European American”, this suggests that it is easier for the respon-dent to think of “European American” and “good” as being associated and is consideredto indicate implicit prejudice against black people. This innovative measurement approachalso could be easily adapted to study implicit prejudice towards people with mental illness.One obvious advantage is that social desirability bias is likely to be minimized.
Opinions about Mental Illness (OMI) and Community Attitudes toward Mental
Illness (CAMI)
This scale was developed in the early 1960s by Cohen and Struening [42] and Struening
and Cohen [43] and continues to be used extensively. The scale came into being becausetreatment developments at the time were based on the idea that social context, both in treat-ment settings and in wider society, affected recovery from mental illness. At that time, thepioneering work of Cumming and Cumming [25] and of Gilbert and Levinson [44] werelimited to uni-dimensional assessments of attitudes towards mental illnesses. To providemore than a single dimension of measurement, Cohen and Struening [42] sought the “ade-quate conception and objective measurement of attitudes towards mental illness (p. 349)”through a multidimensional scale. The Opinions about Mental Illness Scale (OMI) wastherefore developed in two large psychiatric hospitals using the responses of 1194 hospitalworkers.
To construct the scale, Cohen and Struening [42] in 1962 developed approximately 200
items based on quotes from case conferences and casual conversations in the hospitalsthey studied and paraphrases of common ideas about mental illness. These items werereviewed by a group of experts, edited and narrowed down to 55 items. These 55 itemswere then supplemented by 15 items taken from the Custodial Mental Illness IdeologyScale (CMI), the California F-Scale and Nunnally’s work on popular conceptions of mentalhealth. This ﬁnal 70-item instrument was then factor-analysed, and ﬁve dimensions wereidentiﬁed: (A) authoritarianism – that obedience to authority is essential and that personswith mental illness require coercive handling; (B) benevolenc e – a paternalistic view of
people with mental illnesses based on humanism and religion rather than science; (C) men-tal hygiene ideology – the notion that mental illness is like any other illness and that arational, professional approach is essential for effective treatment; (D) social restrictive-ness – that people with mental illnesses should be restricted in important social domainssuch as marriage and employment; (E) interpersonal aetiology – the belief that mentalillnesses result from interpersonal experiences, in particular not having a loving homeenvironment.

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Struening and Cohen [43] subsequently examined whether the ﬁve factors remained
consistent across independent samples of psychiatric hospital employees. The original 70items were reduced to 51 by retaining only items referring to mental illness. The evidencesuggested similar factor structures amongst personnel of three newly sampled hospitals.One factor, mental hygiene ideology, showed poor internal consistency in the three hos-pitals ( Alpha =.29 to .39). However, authoritarianism (.77 to .80), benevolence (.70 to
.73), restrictiveness (.71 to .77) and interpersonal aetiology (.65 to .66) had good internalconsistency. It is this 51-item version of the OMI [43] that is used today (see [45]).
In 1979, Taylor, Dear and Hall [46] and Taylor and Dear [47] created the Community
Attitudes toward Mental Illness (CAMI) measure to analyse the public’s attitudes towardscommunity-based treatment for people with mental illness. They used concepts within theOMI as a model, seeking to regenerate three of ﬁve factors (authoritarianism, benevolenceand social restrictiveness) and to create a new factor assessing community mental healthideology. The scale includes 40 items, 10 for each of the proposed factors. Eleven of theitems were taken from previous scales, with 29 items newly written.
The CAMI was tested using a community sample of 1090 persons from households in
Toronto, Canada [47]. The sample was stratiﬁed by socioeconomic status, location, andwhether a community mental health facility was in the area. The four a priori scales hadAlpha ranging from .68 for authoritarianism to .88 for community mental health ideology,
with benevolence (.76) and social restrictiveness (.80) lying in between. Taylor and Dearalso found the scales to be very highly correlated. A subsequent exploratory factor analysis[47] showed that many of the items placed a priori on one scale had substantial loadings onother factors. Because the items in the authoritarianism and social restrictiveness domainsloaded highly on the same factor, the reallocation of items to other scales could resultin a compact three-factor scale measuring authoritarian restrictiveness, benevolence andcommunity mental health ideology.
The CAMI has continued to be used in recent studies (e.g. [48, 49]). The CAMI’s main
contribution lies in its assessment of attitudes towards community mental health treatmentfacilities. One other advantage of the scale was that it was developed by sampling communitygroups as opposed to the OMI which was created by sampling people who worked in mentalhospitals.
Attributional measures
Attribution theory [50] proposes that an observer’s causal attributions of why a stigmatizingcondition occurs, in particular the target person’s perceived ability to control the event, willshape subsequent emotions and behaviours toward the target. Since Weiner’s [11] ﬁrstapplication of attribution theory to stigma in 1988, researchers have focused on the causaldomains of controllability and stability. The target person’s perceived responsibility for thecondition is hypothesized to predict either anger and punishing behaviour (if perceived tobe controllable), or pity and helping actions (if perceived to be uncontrollable). Causes thatare seen as changeable over time (unstable) generate beliefs that recovery is achievable,while causes that are perceived as unchangeable (stable) elicit beliefs that the condition isirreversible.
In 2000, Corrigan [12] provided a social cognitive model adapted from Weiner’s [11]
work. Corrigan proposed that signals of mental illness (e.g., “that person saying bizarrethings is crazy”) lead to stereotypes (“crazy people are impulsive”) that produce be-havioural reactions including discrimination (“I am going to avoid that person”). In this

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conceptualization, stereotypes of people with psychiatric illness represent cognitive knowl-
edge structures that mediate behavioural responses. Corrigan also deﬁned circumstancesin which behaviours are not mediated by causal attributions, which he deems a variationof Weiner’s [51] theory of primary appraisal [52]. This occurs, for example, when signalsof dangerousness lead directly to an emotional response of fear, which in turn producesbehavioural avoidance or discrimination.
Weiner et al.’s [11] original attribution measure was composed of eight questions about
10 illnesses (5 mental-behavioural and 5 physical). These eight questions consisted of: (a)three items assessing the responsibility, blame and changeability of each illness and (b) ﬁveitems about the subject’s liking, pity, anger, charitable donations, and personal assistancetowards each illness. Three separate indices – controllability, positive emotions and a helpingvariable – were generated by adding single-item scores together ( Alpha ranging from .67
to .90 (see [11]).
The Attribution Questionnaire (AQ), developed by Corrigan [52] and derived from
Weiner’s [11] instrument and 11 items from Reisenzein [53], assesses key constructs fromhis social cognitive model. Corrigan’s AQ consists of 21 items using a nine-point responseset (1=not at all, 9 =very much) to measure six constructs: (1) personal responsibility , (2)
pity, (3)anger , (4)fear, (5)helping/avoiding behaviour and (6) coercion-segregation (each
construct composed of three to four items). Internal consistency of the subscales rangedfrom Alpha =.70 to .96 [52].
Another instrument that assesses causal attributions is the Revised Causal Dimension
Scale (CDSII; [54]) adapted from the Causal Dimension Scale (CDS; [55]). The CDSIIassesses attributional leanings about one’s own personal behaviours or performance. Thisscale consists of: (1) a locus of causality scale , which assesses whether the cause is internal
or is external to the person making the attribution, and (2) a stability dimension , which
gauges whether the cause is ﬁxed or variable over time. The remaining two scales consistof: (3) personal control, or how controllable the cause is by the actor, and (4) external
control, or whether the cause is controllable by outside others. Three items, each rated on
a nine-point scale, compose each CDSII attributional domain. Alpha ranges from .60 to
.92 for these four subscales. To assess stigma, the CDSII has been adapted to measure anobserver’s causal attributions about a stigmatized individual [56].
These attribution measures have typically been administered as surveys, either with or
without a vignette, to study the general population’s emotional and behavioural reactions topeople with mental illness. Several studies have also utilized the AQ to measure subjects’affective and behavioural responses in quasi-experimental conditions, in which an indepen-dent variable, such as exposure to an education condition, was experimentally manipulated.
Measures associated with the “modiﬁed labelling theory”
Perceived devaluation-discrimination
To test hypotheses associated with “modiﬁed labelling theory”, Link [21) devised a per-
ceived devaluation-discrimination measure. Rather than assessing a person’s own beliefsabout people with mental illnesses, the instrument measures a person’s perception of whatmost other people believe. According to modiﬁed labelling theory [8, 21, 22], people develop
conceptions of mental illness as part of their socialization [13, 57]. These conceptions thenbecome a “lay theory” whereby people form expectations as to whether most people willreject or devalue an individual with mental illness [58, 59]. For most people, these beliefs

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are innocuous because they concern how someone else – someone labelled as mentally ill –
will be treated. But for a person who develops a serious mental illness, these beliefs of pos-sible devaluation and discrimination now become personally relevant. Internalizing suchbeliefs can have potent consequences. First, the person may feel personally disheartenedand demoralized [60]. Second, expecting and fearing rejection, labelled individuals may actless conﬁdently and more defensively, leading to impaired social performance [20]. Third,efforts to protect oneself from feared rejection, such as through social withdrawal, may leadto diminished social networks and fewer work, housing and marital opportunities [8, 61].
To test this theory, Link [8, 21, 60, 62, 63] developed a 12-item perceived devaluation-
discrimination measure (utilizing a six-point format) that assesses whether respondentsagree with statements indicating that most people will devalue or discriminate againstpsychiatric patients. Items about devaluation include seeing people with mental illness asfailures or as individuals whose opinions need not be taken seriously. The scale also assessesperceived discrimination by enquiring whether most people would reject people with mentalillness in respect of jobs, friendships and love relationships.
Although the scale has mostly been administered to people in treatment for mental
illnesses, it has been used with the general public as well. Information from the generalpublic is also crucial to testing modiﬁed labelling theory. First, the theory says that eachsociety member, whether labelled with mental illness or not, forms conceptions abouthow people with mental illness will be treated by others. For example, if members of thepublic believed that devaluation and discrimination towards people with mental illnesswas generally absent, a person with newly developed mental illness would not face aninternalized threat of rejection. But Link et al. [8] found extremely few members of thepublic who did not believe that people with mental illness would face devaluation anddiscrimination. Second, because the theory indicates that conceptions about devaluationand discrimination form through socialization via a uniform set of cultural inﬂuences,then scale scores should be quite similar across patient and community groups. Supportingthis idea, no signiﬁcant differences between several patient and community groups werefound in two studies. Further, nearly equal means in scale scores across groups helps torule out the inﬂuence of psychopathology potentially elevating discriminatory perceptionsby the patient group [8, 21]. Finally, modiﬁed labelling theory predicts that perceiveddevaluation-discrimination should have no impact on social or psychological functioningin people who suffer from psychiatric impairment but have never been ofﬁcially labelledwith mental illness. Consistent with this prediction, when administered to persons whowere never ofﬁcially labelled, there were no signiﬁcant associations between scale scoresand earnings, unemployment, social network ties or psychological demoralization [21]. Theinternal consistency of this scale has been reported as .73 in a community-based non-patientpopulation.
Stigma measurement approaches applicable to mental health
consumers
Measures associated with the “modiﬁed labelling theory”
Perceived devaluation-discrimination
In addition to utilization among the general public, the most common use of the devaluation-
discrimination measure has been in groups of mental health consumers. From the consumer’s

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perspective, one’s perception of future devaluation-discrimination of persons labelled with
mental illness becomes personally relevant once one comes into contact with this ofﬁciallabel. This sense of internalized rejection then may lead the labelled individual to adoptcoping orientations which may lead to negative psychological and social outcomes. Arecent study by Link et al. [60] reported that beliefs of anticipated discrimination areprevalent among mental health consumers (see also [8, 64]); 74% agreed that employers willdiscriminate against former psychiatric patients; 81% and 66% similarly expected rejectionin dating relationships and close friendships respectively; and 67% that their opinions willbe taken less seriously. The variation in scale scores mostly ranged between perceptionsof extreme and moderate rejection. Alpha values were reported as ranging from .82 to .86
[63).
Recently, Struening et al. [65] adapted Link’s devaluation-discrimination scale to assess
whether family caregivers endorse that most people devalue families that include a persondiagnosed with serious mental illness. This seven-item scale contains statements aboutwhat “most people would think” rated on a four-point scale (“strongly agree” to “stronglydisagree”). Factor analysis identiﬁed three related factors. The Community Rejection factor,explaining 33% of the total variance, was deﬁned by four items assessing beliefs that mostpeople would avoid social contact with family members of a person with mental illness.The second factor, titled “Causal Attribution”, explained 21% of the variance. This factorwas deﬁned by two items, the more prominent item being “beliefs that most people wouldblame parents for their child’s illness”. The Uncaring Parents factor, explaining 17% of thetotal variance, was deﬁned by one item – that most people believe that parents of childrenwith a mental illness are just as caring as other parents. The seven-item scale has showngood internal consistency ( Alpha =.71 to .77) across two different diagnostic samples.
Experiences of rejection
In addition to beliefs of anticipated rejection, people labelled with mental illness may also
suffer from experiences of rejection. To measure this, Link et al. [62] constructed a 12-itemmeasure ( Alpha =.80) to assess rejection experiences among dually diagnosed persons
with serious mental illness and substance abuse. This scale makes an important contributionby assessing stigma associated speciﬁcally with drug use. Second, it includes new measuresof experiences of rejection, as distinguished from expectations of rejection, for both druguse and mental hospitalization. However, subsequent to this scale’s creation, Wahl [66]constructed a more complete set of items measuring rejection/discrimination experiencesfor people with mental illness in general (see below) which we recommend for use.
Measures of coping orientations and stigma-related feelings
This anticipation of status loss and discrimination may cause a person to seek to avoid suchnegative outcomes by adopting one of several potential coping orientations. While suchcoping orientations can protect a person from rejection, they may also cut off opportunitiesand reinforce the experience of feeling different from others. Negative consequences ensuein a broad range of outcomes, from self-esteem to social networks and jobs. To evaluatethese potential coping actions, Link et al. [8] developed measures of the coping orientationsofsecrecy ,education andwithdrawal , and more recently [67] expanded these coping styles
to include distancing andchallenging behaviours.

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STIGMA MEASUREMENT APPROACHES APPLICABLE TO MENTAL HEALTH CONSUMERS 187
Secrecy measures the degree to which respondents endorse concealment in order to avoid
rejection. An earlier version of the scale [8] included ﬁve items ( Alpha =.71). Link et al.
[67] have since revised and added new items to create a nine-item scale ( Alpha =.84).
Withdrawal measures the degree to which people endorse avoidance in order to protect
themselves from potential rejection. This idea focuses on the tendency to limit social inter-action to those who know about and accept one’s stigmatized circumstance. The originalseven-item version [8] ( Alpha =.67) was recently modiﬁed and expanded to a nine-item
scale ( Alpha =.70) [67].
Educating assesses respondents’ orientation to educating others in order to reduce the
possibility of rejection. The idea originated from Schneider and Conrad [68] and their ideasabout “preventive telling”. The earlier ﬁve-item version [8] ( Alpha =.71) was recently
revised into a three-item scale ( Alpha =.67). The new scale consists of fewer items because
questions from the original version were used to create a new coping-orientation measureof “challenging” (see below).
Challenging measures people’s orientations to confronting prejudice and discrimination.
Link et al. [67] created a ﬁve-item scale ( Alpha =.72) to assess how likely respondents are
to challenge stigmatizing behaviour when it occurs or to disagree with people who makestigmatizing statements.
Distancing is a recently created three-item scale [67] ( Alpha =.63) that assesses the
extent to which people cope with stigma by indicating that their problems are very differentfrom and that they have little in common with other people with mental illness.
Stigma-related feelings
An additional step in the measurement of modiﬁed labelling theory is an assessment of thefeelings that stigma creates in the people exposed to it. To begin to address this, Link et al.[67] introduced two scales of stigma-related feelings – feeling misunderstood by others
and feeling different and ashamed . These new measures provide a more fully elaborated
set of empirical assessments that can be used to test modiﬁed labelling theory. FeelingMisunderstood assesses the degree to which people feel that their experience of mental
illness has been misunderstood by others ( Alpha =.62). The second scale, feeling Different
and Ashamed is a four-item measure ( Alpha =.70) assessing the degree to which people’s
experiences of mental illness and psychiatric hospitalization cause them to feel differentfrom other people and ashamed.
Mental health consumers’ experience of stigma
Although not itself a measurement perspective, the rejection that people with mental illnessencounter represents a critical element of stigma integral to many of the above measurementapproaches. The most comprehensive measure of mental health consumers’ experience ofstigma was developed by Wahl [66]. Common stigma experiences were identiﬁed from ﬁrst-person accounts of mental illness such as those in Schizophrenia Bulletin , from consumer
members of the research team and from representatives of the National Alliance for theMentally Ill. The questionnaire, designed to be self-administered, includes nine statementsconcerning “stigma experiences” such as being treated as less competent and being advisedto lower one’s expectations. There are 12 items concerning discrimination experiences thatinclude being denied a job, educational opportunities, housing or health insurance whenconsumer status was revealed, as well as avoiding indicating consumer status on written

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188 STIGMA MEASUREMENT APPROACHES: CONCEPTUAL ORIGINS AND CURRENT APPLICATIONS
applications for fear of discrimination. Items are rated as occurring “never”, “seldom”,
“sometimes”, “often” or “very often”. Data on reliability are not reported.
Dickerson et al. [69] adapted the instrument for a sample of schizophrenia outpatients
by supplementing the term “consumer” with the term “persons with mental illness”. Theydid so because pilot interviews indicated that many respondents did not associate the term“consumer” with consumers of mental health services. They also administered the surveyin face-to-face interviews rather than via questionnaire. These authors did not report inter-nal consistency reliability estimates, although they found that all nine stigma items weresigniﬁcantly correlated with the total Stigma score, and six of the 12 discrimination itemswere signiﬁcantly correlated with the total Discrimination score.
The use of vignettes in research on stigma
Because vignettes are one of the most common methodological approaches used in tan-dem with stigma measurement perspectives, we include a discussion of their history andcurrent usages. The approach was ﬁrst used in 1955 by Star [70] to examine stigma in astudy of public attitudes towards mental illnesses conducted on a nationwide basis in theUnited States. Star constructed vignettes portraying anxiety neurosis, paranoid schizophre-nia, simple schizophrenia, alcoholism, juvenile character disorder and compulsive phobiaand administered them to over 3000 U.S. residents in 1950. After each vignette, Star assessedthe respondent’s judgement about the seriousness of the vignette condition and whether thevignette character had a form of mental illness. Star’s pioneering data revealed that the pub-lic was very unlikely to view the described disorders as mental illnesses. Only the vignetteof paranoid schizophrenia which included a description that “a couple of times now he hasbeaten up men who didn’t even know him, because he thought they were plotting againsthim” was identiﬁed as “mental illness” by a majority (75%) of respondents. Subsequentstudies using Star’s vignettes showed that the proportion of the general public identifyingthe vignettes as mental illnesses dramatically increased in the 1960s and 1970s, perhapsdue in part to public education campaigns [71].
A critical development in the use of vignettes came in 1963 when Phillips [27] utilized
the Star vignettes in a survey experiment. Phillips manipulated ﬁve vignette disorders (fourfrom Star and a “normal” man) and ﬁve sources of help (no help source, clergy, physi-cian, psychiatrist and mental hospital) in a classic Greco-Latin square experimental design.Phillips’s study showed that help source signiﬁcantly inﬂuenced respondents’ levels of so-cial distance from the vignette character, suggesting that rejection might result from seekingmental-health treatment. From a measurement perspective, Phillips’s innovation ensured thefuture utilization of vignettes by combining their use with the experimental method. Sincethen, investigators have randomly varied other features of vignette descriptions, such assymptoms, behaviours, labels, causal attributions and sociodemographic variables.
The Star vignettes themselves are rarely used now, having been replaced by vignettes
utilizing explicit criteria for diagnosing mental disorders derived from DSM-III (andsubsequently DSM-III-R and DSM-IV). A group at Columbia University (Link, Phelan,Bresnahan and Stueve) speciﬁcally developed vignettes depicting six major mental disor-ders according to DSM-IV criteria. A “troubled person” vignette that did not meet anyDSM-IV criteria was also created as a baseline for understanding responses to the other vi-gnettes. Subsequently, four of these vignettes (alcoholism, major depression, schizophreniaand troubled person) and an additional vignette describing cocaine abuse were administeredas part of the MacArthur Mental Health Module of the 1996 General Social Survey to a

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REFERENCES 189
nationally representative sample of 1444 persons. The exact wording of these vignettes is
available in Link et al. [32] and Pescosolido et al. [33]. Vignettes depicting disorders accord-ing to the International Classiﬁcation of Diseases have also been developed by Angermeyerand Matschinger [72] and Jorm et al. [73] to study public attitudes in Germany and inAustralia, respectively.
Following a vignette description, a variety of measures can be applied. Such measures may
utilize the stigma components discussed earlier regarding the various conceptualizationsof stigma. For example, using Link and Phelan’s conceptualization, people can be askedto suggest labels for the described behaviour – e.g., “Is it some kind of mental illness?”Possible stereotypes such as dangerousness or incompetence as well as the respondent’semotional reactions (e.g., anger or pity) can be assessed. Finally, intentions to discriminatecan be measured by social-distance questions that assess the respondent’s willingness toengage in various types of social relationships with the described person.
There are two major reasons for why vignettes continue to have a prominent position
in research on the stigma of mental illness. First, vignettes present a more elaborate stim-ulus to respondents than simply asking people about “mental illness”, or “mental healthconsumer”. Sometimes investigators may wish to study stereotypes associated with suchgeneral concepts, but vignettes afford great ﬂexibility in allowing researchers to constructstimuli to test speciﬁc ideas about stigma processes. For example, in testing attributiontheory, an investigator may wish to present a person whose illness emerged from a situationhe or she could not control versus a person who may have created his or her problem. Asecond reason vignettes are popular is that they can be administered via random assignment,which brings the power of the experimental method to hypothesis testing. Further, vignetteexperiments can be administered to randomly selected general population survey samples,which in turn improve external validity.
Conclusion
In this chapter, we have reviewed the main measurement perspectives that have arisen tostudy the complex construct of stigma. Beginning with a discussion of several major con-ceptualizations regarding the stigma construct itself, we then traced the development ofeach main stigma measurement approach from its theoretical origins to its current applica-tions. We believe this historical and methodological overview will be useful to researchersintending to use these stigma measurement approaches by providing a fuller context ofthe foundations of each perspective. Further, we believe researchers developing new stigmameasures can draw valuable lessons from how prior measurement traditions developed fromsolid theoretical bases and robust psychometric testing. Lastly, we intend for this review toform a basis for further innovation and growth in developing new measurement paradigmsto advance the study of stigma.
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Appendix Inventories to measure
the scope and impact ofstigma experiences fromthe perspective of thosewho are stigmatized –consumer and familyversions
Heather Stuart, Michelle Koller and
Roumen Milev
Queen’s University, Kingston, Canada
Understanding the needs of people who live with a mental disorder is essential if anti-
stigma programmes are to be appropriately targeted and evaluated against criteria that aremeaningful for those who bear the greatest burden of stigma. This technical appendix iswritten for researchers and programme evaluators to assist them in measuring the scope andimpact of mental-health-related stigma from the perspective of people who have a mentalillness (‘consumers’) and their family members. Information on the development, reliabilityand factor structure of the two inventories (consumer and family versions) is provided.
Conceptualization of stigma
Modern conceptualizations of stigma, based on Goffman’s seminal work [1], recognize afeature or attribute – in this case a mental illness – that serves to morally and socially taint thebearer. Members of stigmatized groups are depicted in inaccurate and stereotypical ways,but at the core of stigma are prejudicial attitudes that often ﬁnd expression in discriminatorybehaviours.
In developing inventories to assess stigma from the perspective of consumers (of mental
health services) and family members, respondents were asked to conceptualize stigma interms of ‘negative feelings that people may have toward those with a mental or emotional
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

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194 APPENDIX
disorder’. To capture a range of stigma experiences, both inventories contain a frequency and
an intensity scale. In each case, the ‘Stigma Experiences’ scales measure the frequency ofstigma experienced. The total score reﬂects the pervasiveness of stigma that was experiencedacross a variety of life domains. The ‘Stigma Impact’ scales measure the intensity of thepsychosocial impact of stigma on major life domains such as quality of life, family relations,social contacts and self-esteem. The two approaches produce results that are modestlycorrelated, indicating that the frequency and impact of stigma experiences are separate butrelated phenomena.
Item development
In each case, items were developed to capture the central features of the stigma experiencedby consumers and family members as depicted in the theoretical, empirical and qualitativeliterature. Stigma experiences characterizing particular sub-groups of people (such as thosewho were employed or those who were hospitalized) were avoided in favour of experiencesthat would be potentially relevant to all respondents. Early versions of the instruments werereviewed by local experts: people who have a mental illness, family members and mentalhealth professionals. Questions were reﬁned for content and ﬂow, then formally ﬁeld-tested.Results of the two ﬁeld tests are reported below. Both ﬁeld tests received ethics clearancefrom Queen’s University, Faculty of Health Sciences, Research Ethics Board.
Internal consistency of the inventory of stigma
experiences – consumer version
Field test sample
People who had been clinically diagnosed with a serious mental illness and who were living
in the community were the target population for this ﬁeld test. A total of 88 volunteerswere recruited from hospital-based outpatient programmes, community clinics, and localmental health advocacy groups. The Stigma Experiences scale (the frequency scale) wasdeveloped and ﬁeld-tested ﬁrst on 30 subjects. A review of the open-ended commentscollected revealed the necessity of differentiating the frequency or breadth of experiencesfrom their psychosocial impact. An impact scale was subsequently developed and tested onan additional 58 respondents. More detailed information on the development and testing ofthis inventory is published elsewhere [2].
The characteristics of the consumer test sample are presented in Table A.1. Sixty percent
were female and the average (median) age was 46 years. Almost two thirds had a college oruniversity education, but only a third were employed in any capacity. Two-thirds were un-married. A third were living with a spouse or partner and a small proportion (approximatelyone in ten) were living with parents. A third were living alone. The most common currentdiagnoses were depression, schizophrenia, anxiety and manic-depressive illness. Forty percent thought their mental health had improved over the previous year and a third thoughtthat it had become worse. One in ten reported that their symptoms had emerged prior to 10years of age and another third reported ﬁrst symptoms during adolescence (11–19 years).Over half waited more than a year to receive treatment and almost one in ﬁve waited overten years. One in ﬁve received treatment during adolescence. Almost 80% had been ill formore than ten years at the time of the survey. Most (over 80%) had come to accept their di-agnosis and had done so for a number of years. Most reported past admissions to psychiatric

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INTERNAL CONSISTENCY OF THE INVENTORY OF STIGMA EXPERIENCES – CONSUMER VERSION 195
Table A.1 Characteristics of the consumer test sample ( N=88)*
Characteristic % ( N)
Gender
•Male 40.9 (36)
•Female 59.1 (52)
Age group
•20–29 13.1 (11)
•39–39 10.7 (9)
•40–49 34.5 (29)
•50–59 25.0 (21)
•60–69 11.9 (10)
•70–79 4.8 (4)
Highest education
•Public school or less 1.1 (1)
•High school 35.2 (31)
•College or technical training 36.4 (32)
•University 27.3 (24)
Employment status
•Employed 32.2 (28)
•Not employed 67.8 (59)
Marital status
•Single 63.6 (56)
•Married/common law 36.4 (32)
Living situation
•Alone 34.5 (30)
•Spouse/Partner 36.8 (32)
•Parents 11.5 (10)
•Other 17.2 (15)
Current diagnosis
•None 2.4 (2)
•Schizophrenia 27.0 (22)
•Manic-depressive illness 24.4 (20)
•Depression 47.6 (39)
•Anxiety 26.7 (22)
•Substance abuse 3.7 (8)
•Other 14.7 (12)
Mental health now compared to a year ago
•Better 40.7 (35)
•About the same 26.7 (23)
•Worse 32.6 (28)
Age that symptoms were ﬁrst noticed
•10 or under 8.6 (7)
•11–19 32.1 (26)
•20–29 28.4 (23)
•30–39 20.1 (17)
•40–49 6.2 (5)
•50–59 3.7 (3)
Age at ﬁrst treatment
•13–19 20.5 (17)
•20–29 34.9 (29)
•30–39 24.1 (20)
•40+ 20.5 (17)
(Continued )

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196 APPENDIX
Table A.1 (Continued )
Number of years between symptoms and ﬁrst treatment
•Under 1 year 43.8 (35)
•1–2 years 15.0 (12)
•3–5 years 11.3 (9)
•6–10 years 11.3 (9)
•10+years 18.8 (15)
Number of years ill (as of 2005)
•10 or under 23.1 (18)
•11–19 21.8 (17)
•20–29 24.4 (19)
•30–39 18.0 (14)
•40–49 11.5 (9)
•50–59 1.3 (1)
Have come to accept diagnosis
•No 15.2 (12)
•Yes 84.8 (67)
Years diagnosis has been accepted
Not accepted 16.7 (12)
•1–5 26.4 (19)
•6–10 19.4 (14)
•11–15 11.1 (8)
•16–20 11.1 (8)
•21–25 9.7 (7)
•25+ 5.6 (4)
Hospital use
•Ever hospitalized for mental illness or suicide attempt 70.1 (61 of 87)
•Ever hospitalized in a provincial psychiatric institution 62.3 (38 of 61)
•Ever hospitalized in a general hospital psychiatric unit 73.8 (45 of 61)
•Ever committed under provincial mental health legislation 32.2 (19 of 59)
•Ever remanded to a forensic unit under federal legislation 2.1 (1 of 47)
Service use in the last year
•Hospitalized as a voluntary patient 19.6 (12 of 61)
•Hospitalized as an involuntary patient 4.9 (3 of 61)
•Use of outpatient community mental health programme 50.0 (43 of 86)
Frequency of outpatient treatment ( N=42)
•Weekly 47.7 (20)
•2–3 times per month 31.0 (13)
•Monthly 4.8 (2)
•Every 2–3 months 11.9 (5)
•1–2 per year 4.8 (2)
*Missing data for some items will mean that frequencies may not total to 88.
institutions and general hospital psychiatric units, and a third had been committed under
mental health legislation. The majority were actively involved in outpatient communitymental health programmes at the time of the survey.
Scoring
The 10 items making up the Stigma Experiences Scale – Consumer Version are shownin Table A.2. The ﬁrst two items refer to expectations of stigma and are scored on a5-point Likert-type scale using the response categories of never, rarely, sometimes, often

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INTERNAL CONSISTENCY OF THE INVENTORY OF STIGMA EXPERIENCES – CONSUMER VERSION 197
Table A.2 Reliability coefﬁcients for the Stigma Experiences Scale – Consumer Version
Item-rest
% endorsed correlation
Scale item (out of 70) ( N=70)
Do you think that people think less of you if they know you
have a mental illness?52.8% .35
Do you think that the average person is afraid of someone with
a serious mental illness?67.1% .39
Have you ever been teased, bullied or harassed because you
have a mental illness?41.4% .44
Have you felt that you have been treated unfairly or that your
rights have been denied because you have a mental illness?44.3% .51
Have your experiences with stigma affected your recovery? 47.1% .54
Have your experiences with stigma caused you to think less
about yourself or your abilities?60.0% .50
Have your experiences with stigma affected your ability to make
or keep friends?41.4% .69
Have your experiences with stigma affected your ability to
interact with your family?57.1% .43
Have your experiences with stigma affected your satisfaction or
quality of life?64.3% .60
Do you avoid situations that may be stigmatizing to you? 61.4% .58
Kuder–Richarson coefﬁcient of reliability (KR-20) =.83
and always. These responses were recoded into a binary variable, with 1 reﬂecting a high
expectation of stigma (often and always), and zero reﬂecting no or low expectation (never,rarely, sometimes). The remaining eight items used three response categories: no, unsureand yes. These were also recoded into binary categories reﬂecting the presence (yes) orabsence (no and unsure) of each experience. To create the index, scores were summedacross all items for a maximum scale score of 10. Aggregated scores showed good dispersionacross the entire range of possible values, with a median of 4.5 and an interquartile rangeof 2.5-7.5.
The seven items comprising the Stigma Impact scale are shown in Table A.3. These were
rated on an 11-point scale ranging from 0 (reﬂecting no impact) to 10 (reﬂecting the highestamount of impact). Items were summed to give a scale score ranging from 0 to 70 with amedian of 35, a mean of 32 and a standard deviation of 19.3.
Internal consistency (reliability) of scale scores
Table A.2 reports the percentage of the sample that positively endorsed each item on theStigma Experiences Scale, the item-rest correlation (showing the correlation between eachindividual item and the remaining scale score with that item removed) and the Kuder–Richarson coefﬁcient of reliability to measure the internal consistency of the scale scoreswhen the data are binary. Positive endorsements for items were generally in the desiredrange, from 41.4% to 67.1%. The average for the scale was .50, above the conventional .40threshold. The item-rest correlations for both items dealing with expectations of stigma fellslightly below the .40, suggesting they may be candidates for removal. However, eliminatingthese items did not improve the overall internal consistency of the scale scores so they were

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198 APPENDIX
Table A.3 Reliability coefﬁcients for the Stigma Impact Scale – Consumer Version
Scale item Median ( N) Item-rest correlation
On a ten point scale, where 0 is the lowest possible amount, and 10 is the highest possible
amount, how much as stigma affected you personally?
Quality of life 4 (59) .77Social contacts 6 (58) .82Family relations 5.5 (48) .82Self-esteem 4 (58) .61
On a ten-point scale where 0 is the lowest possible amount, and 10 is the highest possible
amount, how much has stigma affected your family as a whole?
Quality of life 3.5 (55) .69Social contacts 2.5 (54) .69Family relations 4 (55) .73
Cronbach’s alpha reliability coefﬁcient =.91
retained on the strength of their theoretical relevance. The Kuder–Richarson coefﬁcient of
reliability was .83, indicating high internal consistency of the scale scores.
Reliability coefﬁcients for the Stigma Impact Scale are presented in Table A.3, along with
the median score for each item. Median scores ranged from 2.5 to 6. Item-rest correlationsranged from .61 to .82, yielding a high scale reliability coefﬁcient of .91. The self-esteemitem was the weakest (with an item-rest correlation of .61); however, eliminating it fromthe scale had little effect on the overall reliability, so it was retained.
Spearman’s rank order correlation was used to assess the association between the two
scales. A statistically signiﬁcant but moderately low correlation of .47 ( p=.001), indi-
cated that the two scales share some common variance, but measure somewhat differentconstructs.
Internal consistency of the inventory of stigma
experiences – family version
Test sample
Parents of children with a serious mental illness, such as schizophrenia or depression,
and who attended family-oriented advocacy groups, family network meetings or familyconferences were the target population for this ﬁeld test.
Sixty-six parents completed the inventory. Their characteristics are presented in
Table A.4. The majority were female and the average (median) age was 59 years. Threequarters were mothers and the majority were college- or university-educated. Most wereliving with a spouse or partner and just over half were employed. Half reported that theirmentally disabled relative lived with them.
Table A.5 describes the characteristic of their disabled relative. Over sixty per cent were
male and the average (median) age was 34 years. The most frequently reported diagnoseswere schizophrenia, depression, bipolar disorder and misuse of alcohol or street drugs.Almost half had received more than one diagnosis since the inception of their illness andalmost half were reported to be improving. Half had been ill for more than ten years. Almosthalf ﬁrst noticed symptoms during adolescence (11 to 19 years); however, less than a third

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INTERNAL CONSISTENCY OF THE INVENTORY OF STIGMA EXPERIENCES – FAMILY VERSION 199
Table A.4 Characteristics of the family test sample ( N=66)
Characteristic % ( N)
Gender
•Male 24.2 (16)
•Female 75.8 (50)
Age group
•20–39 12.4 (8)
•40–49 9.1 (6)
•50–59 25.8 (17)
•60–69 25.8 (17)
•70–89 18.2 (12)
Relationship
•Mother 54.5 (36)
•Father 9.1 (6)
•Sibling 9.1 (6)
•Spouse/partner 18.2 (12)
•Other 9.1 (6)
Highest education
•Public school or less 1.5 (1)
•High school 12.1 (8)
•College or technical school 43.9 (29)
•University 42.4 (28)
Living situation
•Alone 12.1 (8)
•Spouse/partner 78.8 (52)
•Other 9.1 (6)
Employment status
•Employed 53.0 (35)
•Not employed 47.0 (31)
Does your relative live with you?
•Yes 50.0 (33)
•No 50.0 (33)
*Missing data for some items will mean that frequencies may not total to 66.
received their ﬁrst treatment during this time and a third waited more than three years before
receiving treatment (17% waited over ten years). The majority had been hospitalized at somepoint in the past and half had been involuntarily committed under mental health legislation.Approximately one third had been hospitalized in the year prior to the survey and almosthalf were involved in the community outpatient treatment system – most receiving weeklytreatment.
Scoring
The seven items making up the Stigma Experiences Scale – Family Version are shown inTable A.6. The ﬁrst four items are scored on a 5-point Likert-type scale using the responsecategories of never, rarely, sometimes, often and always. These responses were recodedinto a binary variable, with 1 reﬂecting the presence of stigma (often and always), andzero reﬂecting the absence of stigma (never, rarely, sometimes). The remaining eight itemsused three response categories: no, unsure and yes. These were also recoded into binarycategories reﬂecting the presence (yes) or absence (no and unsure) of each experience. To

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200 APPENDIX
Table A.5 Characteristics of mentally ill relatives ( N=66)
Gender
•Male 62.1 (41)
•Female 37.9 (25)
Age of relative
•20–29 40.9 (27)
•30–39 16.7 (11)
•40–49 24.2 (16)
•50–59 10.6 (7)
•60+ 7.5 (5)
Diagnosis of relative (multiple responses accepted)
•Schizophrenia 48.5 (32)
•Manic depression/bipolar 24.2 (16)
•Depression 33.3 (22)
•Anxiety disorder 16.7 (11)
•Misuse of alcohol or street drugs 24.2 (16)
•Personality disorder 9.1 (6)
•Other 9.1 (6)
Number of diagnosis
•1 54.5 (36)
•2 28.8 (19)
•3 13.6 (9)
•4 3.0 (3)
Mental health now compared to a year ago
•Better 48.5 (32)
•About the same 37.9 (25)
•Worse 13.6 (9)
Number of years ill (as of 2005)
•Under 5 16.7 (11)
•5–10 30.3 (20)
•11–19 15.2 (10)
•20–29 19.7 (13)
•30–39 10.6 (7)
•40–49 4.5 (3)
•50–59 1.5 (1)
Age that symptoms were ﬁrst noticed
•10 or under 9.1 (6)
•11–19 48.5 (32)
•20–29 27.3 (18)
•30–39 7.6 (5)
•40+ 6.0 (4)
Age at ﬁrst treatment
•5–19 30.3 (20)
•20–29 43.9 (29)
•30–39 15.2 (10)
•40+ 7.6 (5)
Number of years between symptoms and ﬁrst treatment
•Under 1 year 39.4 (26)
•1–2 years 22.7 (15)
•3–5 years 15.2 (10)
•6–10 years 3.0 (2)
•10+years 16.7 (11)

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INTERNAL CONSISTENCY OF THE INVENTORY OF STIGMA EXPERIENCES – FAMILY VERSION 201
Table A.5 (Continued )
Hospital use
•Ever hospitalized for mental illness or suicide attempt 78.8 (52 of 66)
•Ever hospitalized in a provincial psychiatric institution 48.1 (25 of 52)
•Ever hospitalized in a general hospital psychiatric unit 86.5 (45 of 52)
•Ever hospitalized in a forensic unit 17.4 (8 of 46)
•Ever personally involved in commitment process 50.0 (26 of 45)
Service use in the last year
•Hospitalized in the past year 31.8 (21 of 66)
•Hospitalized as a voluntary patient 18.2 (12 of 66)
•Hospitalized as and involuntary patient 24.2 (16 of 66)
•Use of outpatient community mental health program 43.9 (29 of 64)
Frequency of outpatient treatment (N=28)
•Weekly 60.7 (17)
•2–3 times per month 7.1 (2)
•Monthly 10.7 (3)
•Every 2–3 months 7.1 (2)
•1–2 per year 14.3 (4)
*Missing data for some items will mean that frequencies may not total to 66.
create the index, scores were summed across all items for a maximum scale score of 7.
Aggregated scores showed good dispersion across the entire range of possible values, witha median of 2 and an interquartile range of 1–4.
The seven items of the Stigma Impact scale are shown in Table A.7. These were rated on
an 11-point scale ranging from 0 (reﬂecting no impact) to 10 (reﬂecting the highest amountof impact). Items were summed to give a scale score ranging from 0 to 70 with a median of28, a mean of 27 and a standard deviation of 19.6.
Internal consistency (reliability) of scale scores
Table A.6 reports the percentage of the sample that positively endorsed each item on theStigma Experiences Scale, the item-rest correlation (showing the correlation between eachindividual item and the remaining scale score with that item removed) and the Kuder–Richarson coefﬁcient of reliability to measure the internal consistency of the scale scores
Table A.6 Reliability coefﬁcients for the Stigma Experiences Scale – Family Version
% endorsed Item-rest
Scale item ( N=61) correlation
Do you think that people think less of those with a mental illness? 70.5% .29
Do you think the average person is afraid of someone with a mental
illness?52.5% .35
Has your relative been stigmatized because of their mental illness? 42.6% .59
Have you felt stigmatized because of your relative’s mental illness? 19.7% .69Has stigma affected your family’s ability to make or keep friends? 27.9% .46Has stigma affected your ability to interact with your other relatives? 42.6% .45Have your experiences with stigma affected your family’s quality of life? 52.5% .53
Kuder–Richarson coefﬁcient of reliability for binary data (KR-20) =.76

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202 APPENDIX
Table A.7 Reliability coefﬁcients for the Stigma Impact Scale – Family Version
Scale item Median ( N) Item-rest correlation
On a ten-point scale, where 0 is the lowest possible amount, and 10 is the highest possible amount,
how much as stigma affected you personally?
Quality of life 3.5 (54) .80Social contacts 2.0 (54) .85Family relations 4.0 (54) .73Self-esteem 1.0 (55) .69
On a ten-point scale where 0 is the lowest possible amount, and 10 is the highest possible amount,
how much as stigma affected your family as a whole?
Quality of life 4.0 (53) .87Social contacts 3.0 (52) .84Family relations 4.0 (52) .75
Cronbach’s alpha reliability coefﬁcient =.93
when the data are binary. Positive endorsements for items were generally in the desired
range, from 19.7% to 70.5%. The average for the scale was .44, above the conven-tional .40 threshold. The item-rest correlations for both items dealing with expectationsof stigma fell slightly below the .40, suggesting they may be candidates for removal. How-ever, eliminating these items did not improve the overall internal consistency of the scalescores, so they were retained on the strength of their theoretical relevance. The Kuder–Richarson coefﬁcient of reliability was .76, indicating high internal consistency of the scalescores.
Reliability coefﬁcients for the Stigma Impact Scale are presented in Table A.7, along with
the median score for each item. Median scores ranged from 1.0 to 4.0. Item-rest correlationsranged from .69 to .87, yielding a high scale reliability coefﬁcient of .93. The self-esteemitem was the weakest (with an item-rest correlation of .67); however, eliminating it fromthe scale had little effect on the overall reliability, so it was retained.
Spearman’s rank order correlation was used to assess the association between the two
scales. A statistically signiﬁcant but moderately low correlation of .66 ( p=.001) indi-
cated that the two scales share some common variance, but measure somewhat differentconstructs.
Factor structure – stigma impact scales
In order to be valid and interpretable, factor analysis requires interval-level data. While ithas often been used with dichotomous items, the practice is highly suspect and often leadsto anomalous results [3]. The requirement for interval-level data, therefore, excludes thepossibility of testing the factor structure of the Stigma Experiences Scales as these werecomposed of dichotomous variables. However, as the Stigma Impact Scales are numeric, itis possible to assess the extent to which the various items load on a single factor, indicatingwhether variables are assessing a single, underlying dimension.
Table A.8 shows the results of the factor analysis, using a principal factor approach,
for both the consumer and family versions of the Stigma Impact Scale. Results from theanalysis of the consumer version yielded a single factor with an eigenvalue well above

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A COMMENT ON RELIABILITY AND VALIDITY 203
Table A.8 Factor loadings for the Stigma Impact Scales – Consumer and Family Versions
Factor loadings
Item Factor 1 Factor 2
CONSUMER VERSION
How stigma has affected you personally with respect to:
•Quality of life .80 .34
•Social contacts .77 .38
•Family relations .81 .12
•Self-esteem .62 .51
How stigma has affected your family as a whole
•Quality of life .79 −.44
•Social contacts .79 −.43
•Family relations .85 −.37
FAMILY VERSION
How stigma has affected you personally with respect to:
•Quality of life .82 −.30
•Social contacts .88 −.25
•Family relations .77 .53
•Self-esteem .69 .006
How stigma has affected your family as a whole
•Quality of life .90 −.22
•Social contacts .87 −.17
•Family relations .80 .45
1 (4.3), which represented 82% of the variation in the data. All items loaded strongly (.62
to .85) on a single factor, as expected. A principal factor analysis using the seven itemsmaking up the Stigma Impact Scale – Family Version yielded similar results. Items loadedstrongly on a single factor (.69 to .90) with an eigenvalue of 4.7, representing 86% of thevariation in the data.
A comment on reliability and validity
Neither reliability (deﬁned as the reproducibility of a measure), nor validity (deﬁned asthe extent to which a psychometric instrument measures what it was designed to measure)are inherent characteristics of a scale. Both vary with the purpose for which it is used, thecharacteristics of the individuals being assessed, and the environmental context in whichthe assessment takes place. This makes it difﬁcult to declare any scale or inventory to begenerally ‘reliable’ or ‘valid’ [3, 4].
In our applications, consumer and family experts who reviewed the inventories and helped
to revise the questions considered that the scales had good face validity. The content of thequestions appeared to address the most salient features of their own stigma experiencesand the constructs appeared to map well onto those depicted in the theoretical literature.In addition, the scale scores demonstrated good internal consistency. Finally, the StigmaImpact Scales demonstrated a factor structure consistent with a single underlying construct.All of these results suggest that in our application, these scales yielded reliable and validdata. However, users are strongly encouraged to conﬁrm the reliability and factor structureof the scales in their own applications.

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204 APPENDIX
A ﬁnal comment on utility
According to scale development literature, reliability coefﬁcients in the range of .70 to .85
are likely to yield scale scores that are (a) sufﬁcient to describe the distribution of the charac-teristic of interest in a sample and (b) differentiate groups of people on the basis of high andlow scores (discriminant validity). Our coefﬁcients for the Stigma Experiences Scales werewell within this range: .76 and .83 for consumer and family versions, respectively. Theseresults suggest that the experiences scales are ideal for developing population benchmarksand distinguishing groups of people with high and low stigma experiences – knowledgethat is helpful in targeting anti-stigma programmes [5].
The reliability coefﬁcients for the stigma impact scales were higher: .91 and .93 for
consumer and family versions, respectively. Thus, in addition to adequately distinguishingbetween groups on the basis of extreme scores, these scales may also be helpful in differ-entiating between or within individuals, so may be more useful in evaluating the impact ofanti-stigma programmes over time [5].
Understanding the frequency and scope of stigma experienced by people who live with
a mental disorder will be essential for targeting anti-stigma programmes to where they areneeded most. Further, as reducing the psychosocial impact of stigma on people with mentaldisorders and their families becomes an ever more important public health goal, having thecapacity to measure changes over time will be critical to evaluating programme success.The scales described in this appendix are new additions to a ﬁeld that is currently lackingsuch measurement options. Subsequent research will be needed to assess their full utility. Inthe meantime, they are offered to promote the development of an evaluation base in supportof best practices in the ﬁeld of stigma reduction.
Acknowledgements
Funding for this project was provided through an Ontario Premier’s Research ExcellenceAward and a research grant provided by the Schizophrenia Society of Ontario.
References
1. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ:
Prentice-Hall.
2. Stuart, H., Milev, R. and Koller, M. (2005) The inventory of stigmatizing experiences: its devel-
opment and reliability. World Psychiatry 4, S1, 35–39.
3. Aiken, L.R. (1997) Questionnaires and Inventories . New York: John Wiley & Sons (pp. 145–172).
4. Streiner, D.L. and Norman, G.R. (1995) Health Measurement Scales. A Practical Guide to their
Development and Use (2nd edn). Oxford: Oxford University Press.
5. McDowell, I. and Newell, C. (1987) Measuring Health: a Guide to Rating Scales and Question-
naires . New York: Oxford University Press.

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
Index
Note: page numbers in italics refer to ﬁgures and tables
abuse, structural violence 7
academic support, Bavarian Anti-stigma Action
58
action programmes 41advocacy groups, alliance building 163aesthetics of stigma 177Africa
beliefs about mental illness 5initiatives to improve mental health care 10
Alliance for Mental Health (Germany) 54Anti stigma Prize 52anti-discrimination bodies 113anti-rights 7Anti-stigma Action Munich (ASAM) 53, 54–6
public attitudes 54–5
anti-stigma programmes 44–6
analysis of documents/existing information
105, 112–14
constraints 104, 106controlled intervention studies 139–40data analysis 105, 112–14
design 104, 106–14elements 49evaluation of needs 85–122evidence base 135–42family involvement 121implementation 104, 106–14needs assessment 85–122obstacles 104, 106patient involvement 121population attitudes 106–10program logic models 141–2resources 104stakeholder attitudes 106–10student project 56–7surveys 105, 106–10
target groups 88–90theory of change 140–1see also media; public attitudes; public
perceptions
anti-stigma surveys 51, 55–6art competition 166
artists, Open the Doors programme 55ashamed feelings 187asylums 2, 4attorneys 168Attribution Questionnaire (AQ) 184attributional measures of stigma 183–5Australia
anti-stigma initiative 137see also SANE (Australia)
Austria, nurses’ attitudes to people with
schizophrenia 153–4
awareness
campaigns 162Community Awareness Program (Australia)
13
police ofﬁcer training programme 57
Bavarian Anti-stigma Action (BASTA) 50, 53,
56–8
academic support 58general public projects 57information provision 58media projects 57police ofﬁcer awareness training programme
57
student anti-stigma project 56–7
Boulder (Colorado, US)
media relations 169police/probation ofﬁce training 168sustainability of programme 172–3WPA Global Programme 162–73
burnout risk 45, 120
Calgary (Alberta, Ca)
media relations 169Partnership Programme 170sustainability of programme 172–3WPA Global Programme 162–73
CAMIMH (Canada) 13campaigns 12–13
Understanding the Stigma of Mental Illness: Theory and Interventions Edited by Julio Arboleda-Fl´ orez and Norman Sartorius
C/circlecopyrt2008 John Wiley & Sons, Ltd

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
206 INDEX
Canada
CAMIMH 13mental health review 137WPA Global Programme against Stigma
37–8, 40, 116–17
see also Calgary (Alberta, Ca)
capacity
deﬁnition 88elements 89
Causal Attribution 186challenging 186, 187championlessness 8change, theory of 140–1Changing Minds (Royal College of
Psychiatrists, UK) 12, 137
Chinese culture, family responsibility 11citizenship 21clinical epidemiology 138communications 126
WPA Global Programme 163
Community Attitudes toward Mental Illness
(CAMI) 183
Community Awareness Program (Australia)
13
community mental health agencies 6community opinion leaders 165Community Rejection factor 186community-based care, shift to 21Competence Centre for Destigmatization of
People with Schizophrenia (D¨ usseldorf )
53
concealability of stigma 177concepts of stigma 176–9, 193–4connectedness 21consumers
internal validity of inventory of stigma
experiences 194, 195–6 , 196–8
involvement
in school projects 170in WPA Global Programme 163
speakers’ bureau 169–70stigma experiences 187–8stigma measurement 185–8
inventories 193–8, 202–4
contact 13–14controllability of stigma 3coping orientations 186–7course of stigma 177Crazy? So What! programme for schools 59–60criminal justice system
programmes 167–8see also police ofﬁcers
criminalization 2–3, 7cross-cultural issues 19–31cultural concept of stigma 24cultural perceptions of mental illness 4, 19–31
changes 22cultural translation 25
cultural values, inﬂuence on society 24culture-based syndromes 27Czech Republic, schools programmes 60
data analysis 105, 112–14
deinstitutionalization 6, 21depression
impact of stigma 12stigma level 29, 30
Determinants of Outcomes of Severe Mental
Disorder (DOSMeD) 19, 23
devaluation, perceived 184–6developing countries
beliefs 5, 11Internet gap 125mental health treatment unmet need
136
needs assessment 118–19outcomes of mental illness 23
diagnosis disclosure 149–50, 155differences
associating with negative attributes 178distinguishing 177–8feelings 187labelling 177–8
dimensions of stigma 176–7disaggregated prioritization 115discrimination 112–13, 178–9
health insurance 10–11impact 136perceived 184–6policy makers 10–11structural violence 7
discriminatory practices 5disenfranchisement 7–8disruptiveness of stigma 177distancing 186, 187domains/domain shifts, mental illness outcomes
21–2
DSM-IV criteria, vignettes for SGC–MHS
study 26–7
economic development, cultural change 24
education 186, 187educational activities 12–13, 14Egypt, schools programmes 166e-mail 126
website enquiries 131–2
emotional response to stigma 178employers 164empowerment competencies 120encounters 62epidemiology, clinical 138Europe, stigma in 28–9
differences across countries 29–30post-communist countries 29

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
INDEX 207
evidence based practice
anti-stigma programmes 137–40research syntheses 138rules for production of evidence 139stigma impact 139theory-based evaluation 140–2
evidence-based interventions
anti-stigma programmes 135–42development 31
exclusion, impact of stigma 11
families
disenfranchisement 8involvement in WPA Global Programme 163online communities 126stigma 11
measurement inventories 193–4, 198–204
surveys on schizophrenia 73–4WPA anti-stigma website 128
fear of mental illness 4feelings, stigma-related 187ﬁlms 5, 55focus groups 97–104, 105
co-facilitators 100conduct 99–102cost103
data analysis 102–4discussion question development 99, 100,103
duration 103
establishment 100–1facilitators 100functions 98–9moderation 101–2participants 99probes 99, 100
problem deﬁnition 99session running 101–2Switzerland 119use 98–9
function of stigma 4
general practitioners
attitudes to schizophrenia patients 148, 150–1
WPA Global Programme 156
German Research Network on Schizophrenia
(GRNS) 50–1, 53
Germany
Alliance for Mental Health 54needs assessment 117–18Open the Doors programme 49–66see also Anti-stigma Action Munich
(ASAM); Bavarian Anti-stigma Action(BASTA); Irre menschlich Hamburg;Irrsinnig Menschlich e.V .
Global Programme against Stigma and
Discrimination because ofSchizophrenia (WPA) 14, 20, 37–46action groups
country 40, 41, 42–3 , 131
local 131materials for 45–6
anti-stigma interventions 42–3
anti-stigma programme requirements 44–6burnout prevention in leaders 45Canadian pilot study 37–8, 40, 116–17collaborative projects 40communication 163community opinion leader accessing 165consumer involvement 163consumer speakers’ bureau 169–70country action groups 40, 41, 42–3
website usage impact 131
criminal justice system work 167–8duration 44effective programme participation 163exhibits 45family involvement 163goals 44implementation 162Internet use 126involvement of people 44–5local action committee development 162–3local action groups 131markers 38materials for action groups 45–6media watch groups 170–2monitoring 46multi-sectoral teams 44needs assessment 116–20objective 41participating countries 38
progress monitoring 164–5reporting 45resources 172, 173Scientiﬁc Director’s ofﬁce 40–1scope 39sequence of steps guidelines 41Steering Committee 38, 40structure 40success evaluation 41, 46surveys 107, 109sustainability 172–3target group selection 164targets for action 41, 44tools 45–6vicious circle model 38, 39,4 5
website 126
content development 128–9enquiries 131–2health professional use 128, 131languages 128–9local action group impact 131metatags 129statistics 130–1

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
208 INDEX
website ( Continued )
usage 129–31visitors 130–1
work responsibility assessment 164–5see also media; Open the Doors stigma
programme (WPA); schoolchildren;schools
Goffman’s concept of stigma 176
Hamburg (Germany) seeIrre menschlich
Hamburg
health budgets 10health care professionals 69–83health indicators, data analysis 112health insurance, discrimination 10–11,
112–13
health personnel, attitudes 11–12health professionals
attitudes to schizophrenia patients 147–56
negative 154–5
burnout risk 45, 120psychosocial stressors 120studies of attitudes 147–8WPA anti-stigma website 128, 131see also psychiatrists
health promotion campaigns 162health services management 138human rights 2
infringements 6–10negative 6, 9positive 6, 9scope 8–9
identity of stigma 3
impact of stigma 3Implicit Association Test (IAT) 181–2inclusion, barriers to 31inputs into solutions, needs assessment 90institutionalization 2
legislation 6
international collaborations, Open the Doors
programme 52–3
International Convention on Social, Economic
and Cultural Rights 9
International Covenant on Civil and Political
Rights (ICCPR) 9
International Covenant on Economic, Social
and Cultural Rights (ICESCR) 9
International Pilot Study of Schizophrenia
(IPSS) 19, 22–4
International Social Survey Program (ISSP)
25
International Study of Schizophrenia (ISoS) 19,
23
Internet 125–33
mental health education 125–6
interventions, effectiveness 139interviews 93–7, 105
approaches 94–5conducting 97data analysis 97fully-structured 94interviewer selection/training 96–7open-ended 94, 95outcomes 96
planning 94protocol development 95purpose 93–4purposive sampling 95question wording 96recording 95respondent sample selection 95summarizing 95transcription 95types 94–5
inventory of stigma experiences
consumer version 194, 195–6 , 196–8, 202–4
family version 194, 198–9, 200–1 , 201–4
ﬁeld test samples 194, 195–6 , 196
internal consistency 194, 195–6 , 196–9,
200–1 , 202
reliability 203utility 204validity 203
Irre menschlich Hamburg 61–5
anti-stigma activities 62–4educational units 62–3open days for schoolchildren 63–5principles 62workshops 63–5
Irrsinnig Menschlich e.V . 58–61, 118
goals 59media work 60–1MUT Prize 60public relations 60–1
Japan
anti-stigma initiatives 137renaming of schizophrenia 137, 155
Jones and colleagues’ dimensions of stigma
176–7
journalists
inclusion in local action committee 168–9materials for 80Open the Doors programme 51
judges 168
knowledge, spreading 75labelling
differences 177–8modiﬁed labelling theory 184–5
landlords 164law reforms 8

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
INDEX 209
Learning Kit for mental illness 56–7
legal activism 6legislation 6–7
discrimination 112–13
Leipzig (Germany)
schools programmes 166see also Irrsinnig Menschlich e.V .
Link and Phelan’s components of stigma 177–9literature reviews 138
needs assessment 115–16
Macedonia, Open the Doors programme 52–3
‘madness,’ religious interpretation 2markers
negative content loading 38removal 39
marks 176–7media
analyses 110–12anti-stigma projects 57content analysis 110discourse analysis 110–11frame analysis 110–11local action committee work 168–9local campaigns 79–82low-cost outlets 172national campaigns 79–82people with mental health problems 60–1portrayal of mental illness 5–6public relations 54–5regional campaigns 79–82selective campaign 81strategies 80
media watch groups 170–2medical students, attitude to people with
schizophrenia 151–2
mental health
global access to treatment 136Internet use 125–6knowledge 107law reform 8legal activism 6literacy 107reforms 136see also health professionals
mental health care
quality of 10Spain 70–1
mental health systems
former 2, 4modern 6
mental illness
barriers to care and inclusion 31conceptualization of stigma 193–4consumer involvement in WPA Global
Programme 163
cultural perceptions 4, 19–31Learning Kit 56–7
misconceptions 5online communities 126outcomes 21–2, 24public health importance 135–6public images 110–12public perceptions 22, 86rejection 30segregation 4worldwide impact 19see also depression; schizophrenia
MI Principles 9misunderstood feelings 187modiﬁed labelling theory 184–5
associated measures 185–7
MOOSE guidelines 140Morocco, needs assessment 118–19multi-disciplinary work outcome studies 21–2Munich (Germany) seeAnti-stigma Action
Munich (ASAM)
MUT Prize 60
NAMI (US) 13, 58, 162
media watch activity 171website 127
National Alliance on Mental Illness seeNAMI
(US)
National Stigma Clearinghouse (US) 171need
deﬁnition 87elements 88, 89
levels 88–90priority setting 114–15ranking 115
needs assessment 85–122
action plan development 115–16anti-stigma intervention
design/implementation 104, 105, 106–14
data gathering 91–2deﬁnition 87developing countries 118–19disaggregated prioritization 115end state determination 91–2exploration 90–1feasibility 114focus groups 97–104group methods 97–104importance 114inputs into solutions 90interviews 93–7, 105
literature reviews 115–16Morocco 118–19multi-criteria approaches 114planning 88, 90–3policy makers 90post-assessment 92–3pre-assessment 90–1

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
210 INDEX
needs assessment ( Continued )
priority setting 121programme choices 121resources 90results translation into practice 114–16risk assessment 115service providers 90service recipients 89social marketing campaigns 161–2solution strategy selection 115–16strategies 93–104, 105, 106–14
Switzerland 119–20target groups 88–90
perspectives 93–104
utilization 92–3WPA Global Programme 116–20
New Freedom Commission inquiry (US) 137
New Zealand, anti-stigma initiative 137nurses, attitudes to people with schizophrenia
153–4
online communities 126
Open the Doors stigma programme (WPA) 14
activities 75Alliance for Mental Health (Germany) 54Anti stigma Prize 52conferences 82–3design 71–2family surveys 73–4general public
interventions 51survey 72–3, 74, 76–9
Germany 49–66international collaborations 52–3interventions 50–4journalists 51
materials for 80
knowledge spreading 75lectures 75media
analysis reports 81anti-stigma projects 57campaigns 79–82journalists 51, 80people with mental health problems 60–1press conferences 82public relations 54–5
message board 127nationwide campaign in Spain 76–82objectives 71patient surveys 51, 55–6, 73–4pilot programme 72–5poster sessions 55post-initiative survey 53press conferences 82psychiatrist surveys 73–4public surveys 51, 55–6publications 51–2, 55
schools 51scientiﬁc meeting participation 82–3social sensitization 75Spain 69–83sponsors 72strategy 71training manual 51–2training modules 53training seminars 75website 55, 83, 126–7working groups 71–2
Opinions about Mental Illness (OMI) 182–3origin of stigma 177outcomes of mental illness 21–2, 24
Partnership Programme (Calgary, Alberta)
170
patient surveys 51, 55–6
schizophrenia 73–4
patients
Open the Doors programme 51see also consumers
perceived devaluation–discrimination 184–6perception of stigma 4
see also cultural perceptions of mental
illness; public perceptions
peril of stigma 177personal stories, WPA anti-stigma website 128perspectives of stigma 3police ofﬁcers 164
awareness training programme 57experiences with people with schizophrenia
168
training programmes 57, 167–8, 173
policies
discrimination 112–13, 136evidence-based medicine 138
policy makers 5
discrimination 10–11needs assessment 90
political activism 14political system, alienation 8poster sessions, Open the Doors programme 55poverty 7power, stigma dependence 179powerlessness 8prejudice 5, 11prevention of stigma, Irres menschlich 62Principles for the Protection of Persons with
Mental Illness and for the Improvementof Mental Health Care (MI Principles) 9
prisons 2–3probation ofﬁcers 168program logic models 141–2programmes seeanti-stigma programmes
project leaders, burnout prevention 45

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
INDEX 211
psychiatric units 6
conditions 154–5
psychiatrists
attitudes to schizophrenia patients 149–50diagnosis disclosure 149–50, 155rejection 75schizophrenia surveys 73–4
psychiatry
academic banishment 4evidence-based medicine 138–40global access to services 136public relations 58–61stigma 55
psychologists, attitudes to people with
schizophrenia 153–4
psychosocial stressors, health professionals
120
public attitudes
analysis 73Anti-stigma Action Munich 54–5anti-stigma projects 57, 72–3, 74, 76–9
clusters 77, 78–9surveys in assessment 106–10
public health
deﬁnition 135evidence-based approach to anti-stigma
activities 135–7
international 136national level 136–7stigma importance 30, 31
public image of mental illness 110–12public perceptions
mental illness 22, 86schizophrenia 5, 54–5, 155
public relations 54–5
people with mental disorders 60–1psychiatry 58–61
public service announcements 172public speaking 170public surveys 51publications
Global Programme against Stigma and
Discrimination because ofSchizophrenia 45–6
for journalists 80Open the Doors programme 51–2, 55
quality of life, barriers to 31
questionnaires
design 107–9mental health professionals’ attitudes to
patients 148, 149
piloting 109
questions, types 108
reactions of stigma 3
real-estate agents 164recovery 21, 30
mental health reforms 136
regulations, discrimination 112–13rehabilitation, Irres menschlich 62rejection
experiences 186internalized 186mental illness 30psychiatrists 75schizophrenia patients 74
resources
anti-stigma projects 172needs assessment 90
Revised Causal Dimension Scale (CDSII) 184risk assessment 115
SANE (Australia) 13, 50, 58
SANE (Germany) 58schizophrenia
diagnosis disclosure 149–50, 155general population surveys 72–3, 74, 76–9
general practitioners
attitudes 148, 150–1
role in care 150–1
health professionals’ attitudes 147–56
negative 154–5
medical students’ attitudes 151–2nurses’ attitudes 153–4Open the Doors stigma programme
Germany 49–66Spain 69–83
psychiatrists’ attitudes 149–50psychologists’ attitudes 153–4public perceptions 5, 54–5, 155rejection feelings
of patients 74of psychiatrists 75
service quality in US 155stigma level 29, 30stigma reduction 155–6syndrome 39terminology 155web site 55see also Global Programme against Stigma
and Discrimination because ofSchizophrenia (WPA)
schoolchildren 164
open days 63–5own experience 65
schools
anti stigma activities 62–4consumer involvement in projects 170Crazy? So What! programme 59–60curriculum 173educational units 62–3identity 62open days 63–4

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
212 INDEX
schools ( Continued )
Open the Doors programme 51projects 165–6trialogic campaign in Hamburg 61–5
secrecy 186, 187segregation, mental illness 4self-esteem, negative impact of stigma
11, 12
Semantic Differential 181–2service providers, needs assessment 90service recipients, needs assessment 89Slovakia
anti-stigma initiative 61schools programmes 60
social constructions 3social distance 179–80social indicators, data analysis 112social integration 21social marketing campaigns 161–2Social Response Questionnaire (SRQ) 181social sensitization 75social sharing of stigma 4social welfare, tradition 29society, cultural values inﬂuence 24Spain
medical students’ attitudes to people with
schizophrenia 153
mental health care 70–1nurses’ attitudes to people with schizophrenia
153
schizophrenia diagnosis disclosure 150
speakers’ bureau 169–70stakeholders, surveys in assessment
106–10
Star vignettes 188–9status loss 178–9stereotyping 11stigma 1–15
attitudes 4–5attributional measures 183–5burden 135–7conceptualizing 176–9consequences 10–12consumer experiences 187–8cultural contexts 19–31deﬁnition 69, 177historical perspectives 1–3, 20–2measurement 176–89
approaches 179–83consumers 185–8
programmatic needs 85–122reduction 155–6
activities 135–7
socio-political aspects 2theoretical considerations 3–4
Stigma Experience scales 194
Consumer Version 194, 195–6 , 196–8Family Version 199, 201–2
reliability coefﬁcients 204utility 204
Stigma Impact scales 194, 198
Consumer Version 197, 198factor structure 202–3Family Version 201, 202, 203
reliability coefﬁcients 198, 202, 204
Stigma in Global Context – Mental Health
Study (SGC–MHS) 20–31
data analysis 27design 25–7ﬁelding 26interview schedule 26measures 27results 28–30sampling 26vignettes 26–7
stigma-busting activities 12stigmatization
acute 58vicious cycle 38, 39, 45, 69, 70
stigmatizing attitudes, SGC–MHS study 27,
29–30
Stop exclusion. Dare to care programme
(WHO) 13–14
strategies to combat stigma 12–14stress management, training 120structural violence 7student anti-stigma project 56–7supernatural causes of mental illness 5surveys 105, 106–10
budgets 107conducting 109data analysis 109design 107–9objectives 106–7quantitative scales 108questionnaires
design 107–9piloting 109
Switzerland 119
Switzerland
general practitioner role in schizophrenia care
150
needs assessment 119–20psychiatrist attitudes to schizophrenia 150
target groups for WPA Global Programme 164,
165–6
theory-based evaluation 140–2translation, cultural 25TREND statement 140trialogue 61–5Turkey
general practitioner role in schizophrenia care
150–1

JWBK162-IND JWBK162-Arboleda March 7, 2008 19:15
INDEX 213
medical students’ attitudes to schizophrenia
patients 152
nurses’ attitudes to people with schizophrenia
153
UK, anti-stigma initiative 137
US
mental health review 137nurses’ attitudes to people with schizophrenia
153
private health sector 155public service system 155schizophrenia service quality 155
“us” and “them” separation 178
vignettes
health professionals’ attitudes to
schizophrenia patients 148
medical students’ attitudes to schizophrenia
patients 151–2
SGC–MHS study 26–7use in stigma research 188–9
violence
mental illness association 5–6structural 7
visibility of stigma 3
website, schizophrenia 55, 83
withdrawal 186, 187World Health Organization (WHO), Stop
exclusion. Dare to care programme
13–14
World Psychiatric Association (WPA) 13–14,
20
international anti-stigma effort 136scientiﬁc section for stigma study 137–8see also Global Programme against Stigma
and Discrimination because ofSchizophrenia (WPA); Open the Doorsstigma programme (WPA)
young people, access to treatment 7

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