Reducing The Stigma of Mental Illness

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Reducing the Stigma of Mental Illness
The stigma attached to mental illness is the main obstacle to better mental health care and better
quality of life for people who have the illness, for their families, for their communities and
for health service staff who deal with psychiatric disorders. Stigma is pernicious and there are
indications that, despite advances of psychiatry and medicine, it continues to grow and have
more and often terrible consequences for patients and families.
In 1996, the WPA began an international programme to fight the stigma and discrimination
associated with schizophrenia. The ‘Open the Doors’ programme has been implemented since
then in more than 20 countries and has involved about 200 different anti-stigma interventions.
This book details the results of these international efforts and provides recommendations and
guidance for those seeking to join this initiative or to start similar efforts for dispelling stigma
and discrimination.
Norman Sartorius is one of the most prominent and influential psychiatrists of his generation.
He has served as Director of the Division of Mental Health at the World Health Organization,
and subsequently as President of the World Psychiatric Association. He is a member of the
Council of the World Psychiatric Association and of the Expert Advisory Panel of the World
Health Organization. He is an honorary professor of the University of London, a professor at
the Universities of Zagreb and Prague and has held or holds professorial appointments at the
Department of Psychiatry of the University of Geneva and at several other universities in Europe,
the USA and China; he is a senior associate of the Faculty of the Johns Hopkins School of Public
Health in Baltimore. He has written over 300 scientific papers and has authored, co-authored or
edited more than 40 books.
Hugh Schulze is President and CEO of c|change Inc., a marketing communications company
in Chicago, USA. His 25-year career in the communications field has included work in many
industries, including healthcare and experience in all media. For the last 10 years, he has served as
Communications Consultant for the ‘WPA Global Programme to Fight the Stigma and Discrim-
ination because of Schizophrenia’ and has spoken at conferences and congresses internationally.
He is also Consultant for the WPA Global Child Mental Health Programme.
Reducing the Stigma
of Mental Illness
A Report from a Global Programme
of the World Psychiatric Association
Norman Sartorius
and
Hugh Schulze
cambridge university press
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Contents
Preface page xi
Introduction xiii
Structure of this Book xix
Participants in the Programme xxi
Acknowledgements xxv
1 Developing the Programme 1

What conceptual framework should the programme adopt? 2
The vicious cycle of stigmatization 2
Focus on schizophrenia or on mental illness in general? 6
Who should carry out the programme on country level? 7
How should the activities of the programme be selected? 7
What administrative structure should the programme have? 8
How long should the programme last? 9
What relationship should there be with other efforts dealing with
problems of stigma and discrimination? 10
How should the programme be evaluated? 10
References 12
Phase I Calgary, Alberta, Canada 13
2 The Canadian Pilot Site 15

Calgary, Alberta 15
Health care professionals 18
Emergency room professionals 18
Medical students, senior health care policy-makers and general health
professionals 19
Teenagers: students in grades 9 and 11 21
The Teens Talking 2 Teens Competition 23
v
vi Contents
Community Change Agents and opinion leaders 24

Who is the general public? 27
Conclusion 29
Bibliography – Canada 31
Phase II 33
3 Spain 35
Working from the inside out 37
Interventions for individuals living with schizophrenia and their families 38
Health care institutions 38
An approach to the public 39
Results 40
Bibliography – Spain 41
4 Austria 42
Establishing a benchmark 43
Targeting journalists 43
Educating high school students 44
Broadening the audience 44
Mental health services 45
Conclusions 45
Bibliography – Austria 46
Phase III 47
5 Germany 49
Düsseldorf 51
Interventions undertaken since 2000 52
The first ‘Anti-stigma Prize’ in Germany 52
Anti-stigma Training Modules 52
Competence Centre for Destigmatization of People with
Schizophrenia 53
Hamburg 53
Itzehoe-Steinburg and Kiel 54
Leipzig 54
Interventions based upon Focus Group results: secondary school
students 55
Adult education 56
Media 56
vii Contents
Munich 56
Conclusion 58
References – Germany 59
Bibliography – Germany 59
6 Italy 62
Research 63
Stigma and high school students 63
Stigma and journalists 64
Working with employers and their employees 65
Conclusion 67
References – Italy 68
Bibliography – Italy 68
7 Greece 70
A unique national opportunity 71
Mental health professionals 72
Working with the media 72
Expanding the volunteer network 73
Stigma and the arts 74
Support materials for communication 75
Stigma and high school students 76
Individuals living with schizophrenia and families 76
Local networking and awareness 77
Conclusion 77
Bibliography – Greece 78
8 United States 80
Employers 81
Criminal justice system 82
Media and the general public 84
High school students: reaching beyond schools 84
Conclusion 85
Bibliography – United States 86
9 Poland 88
Putting the structure in place 88
Assessing needs 89
A national perspective 90
A non-governmental organization dedicated to schizophrenia 90
Teachers and students 91
viii Contents
Employers 91
Church and clergy 91
A Day of Solidarity 92
Conclusion 93
Bibliography – Poland 94
10 Japan 95
Follow-up research on effectiveness 96
Study 1: Japanese psychiatrists 96
Study 2: Individuals diagnosed with schizophrenia 97
Study 3: Family members 97
Study 4: General public/college students 97
Study 5: Psychiatric professionals in universities 98
Guidelines for the future 98
Working in the community 99
Tokachi 100
Sendai 100
Okayama 101
Moving forward 102
References – Japan 103
Bibliography – Japan 103
Phase IV 105
11 Slovakia 107
Starting in Michalovce 107
Changing, not fighting, the system 109
Working with and through the media 109
Conclusion 110
References – Slovakia 111
12 Turkey 112
Building a programme and a non-governmental organization 113
General practitioners 113
Working with the general public 114
Consumer and family members 115
High school students and teachers 115
Conclusion 116
Bibliography – Turkey 116
ix Contents
13 Brazil 117
Establishing the programme 117
Targeting two communities 118
Objectives, target audiences and research 119
Educational initiatives 120
Building a coalition 120
Cultural activities 121
Conclusion 121
Bibliography – Brazil 122
14 Egypt 123
Research 123
Primary care physicians 124
Individuals living with schizophrenia and family members 124
Journalists 124
Interventions 124
Working with medical students 125
Secondary school students 125
Broadening the programme 125
Bibliography – Egypt 126
15 Morocco 128
Research 128
Family members and individuals living with schizophrenia 128
Medical professionals 129
Interventions 129
On-going focus on medical professionals 131
Conclusion 131
Bibliography – Morocco 132
16 United Kingdom 133

Phase One 133
Implementing workshops with police officers 134
Implementing workshops in schools 134
Findings and recommendations 135
Phase Two 136
Conclusion 136
Bibliography – United Kingdom 137
x Contents
17 Working in Partnership – Australia 139

A wealth of information resources 139
In collaboration with the media 140
Award-winning efforts 140
18 Chile, India and Romania 142

Chile 142
Interventions in the psychiatric community 143
Consumers and family members 144
Reference – Chile 144
Bibliography – Chile 144
India 145
The importance of family support 145
New initiatives 146
Educational initiatives 147
Working with the National Service Scheme 147
Bibliography – India 148
Romania 149
References – Romania 151
19 Conclusions and Recommendations 152

Structure and flexibility 153
Target groups 155
A question of media 162
Development of messages 166
Recommendations about principles of programme development 169
Reference 171
Afterword 172
Appendix I 175
Appendix II 215
Appendix III 223
Appendix IV 229
Index 234
Preface
The Second World War is now becoming a dim memory for all but those who lived
it. Among them, those who were not soldiers by profession, civilians caught in the
maelstrom of misery, death, terror, starvation and suffering also remember it with
particular clarity.
In that war, my mother, a pediatrician, joined the partisans in Yugoslavia and
took me along. Although this has been more than half a century ago and I was only
8-year old I still remember the time we spent with the resistance movement with
extraordinary clarity: the years immediately before and after have long receded
into vague landscapes of time. Among the memories of the war is one of the nasty
winter of 1943 when I had an experience that gained in significance over the years.
We had completed many hours of enforced march and had come to a road
that we had had to cross: it was well guarded and it was necessary to wait for a
period between the enemy patrols to get to the other side. Everyone had to remain
absolutely quiet. We held that position for hours waiting for the signal to proceed.
It was there that I saw a cortege, a carriage with six white horses, with attendants
dressed in eighteenth century costumes and finery pass by on the protected road.
It was quite beautiful and I remember how extremely clear it seemed to me. I
heard the sound of the hoofs and muted voices of the attendants. The carriage was
moving slowly and once it passed another came along. This hallucination lasted
for what seemed a long time. When I pointed to the sight and described it to others
they looked at me puzzled and ordered me to stop talking about it.
Over the past few decades a number of new findings contributed to our know-
ledge about schizophrenia. Some of these relate to morphological changes of the
brain observable by the increasingly powerful investigative techniques. Others
relate to the nature of the schizophrenic experience, to the importance of main-
taining the patients’ self-esteem for the process of recovery and to the positive role
that families can play in helping the patient if properly trained.
And yet, for all the advances that have been made by the neurosciences, by
the social and behavioural sciences, by studies of treatment and by public health
investigations the mystery of the brain–mind barrier seems as impenetrable as
it always was. Jim van Os and others demonstrated that typical symptoms of
xi
xii Preface
psychosis appear in people who never consulted a doctor for it with a surprisingly
high frequency (Verdoux and Os, 2002): why some of these experiences appear
and vanish while others stay or keep coming back and occupy one’s mind is still
unclear. Why did I see the cortege with white horses when no one else saw it and
why did this type of experience never come back even though there were many
other situations in which I was exhausted, hungry, sleepy and frightened? And
what would have happened to me had I been brought to a hospital, kept there for
observation and maybe given some treatment? Could the label of being kept for
observation in a mental institution have changed my subsequent schooling, social
relationships and working life?
The level of our ignorance is such that it is safe to predict that much more time
is necessary before we learn enough about schizophrenia to be able to prevent it.
We can however provide care to people who suffer from schizophrenia and know
what could enhance the probability that our treatment will be successful and that
patients will find their place in society. We know what obstacles stand in the way of
recovery and rehabilitation. Among these obstacles undoubtedly the most serious
and difficult is the stigmatization of mental illness and of all those in contact with
it – the sufferers, their families, the medications used for treatment, the institutions
in which treatment is provided, staff in mental health institutions and even the sites
on which they are located.
This book is about stigma and ways of fighting it. It reports on what we and the
other participants in the WPA Global Programme against Stigma and Discrimina-
tion because of Schizophrenia have learned from it. It also contains our thoughts
about ways of intensifying the programme and making it an essential part of health
services, equivalent in importance to training staff about ways to treat diseases.
We hope that this volume will make readers aware of the nature of stigmatiza-
tion of mental illness in different cultures and of the consequences of stigma and
discrimination for all concerned. We also hope that it will make readers eager to
join those who fight these because they are awesome obstacles to progress not only
for mental health programmes but also for progress towards the creation of a civil
society.
Norman Sartorius
Geneva, Switzerland, 2005
REFERENCE
Verdoux, H. and van Os, J. (2002). Psychotic symptoms in non-clinical populations and the
continuum of psychosis. Schizophrenia Research, 54(1–2), 59–65.
Introduction
The stigma attached to mental illness and all that is related to it – patients who
suffer from mental disorders, their families, psychiatric institutions, psychotropic
medications – is the main obstacle to better mental health care and better quality
of life of people who have the illness, of their families, of their communities and of
health service staff that deals with psychiatric disorders. It is a basic component
of the negative discrimination that people with mental illness experience every
day. It blocks access to facilities and options that, in principle at least, have been
created to help people impaired by mental illness. Stigma is pernicious and what
is worse there are indications that despite advances of psychiatry and medicine
stigma continues to grow and has more and more often terrible consequences for
patients and families.
The stigma associated with schizophrenia is particularly harsh. A person diag-
nosed with the illness will be seen by most of those around him or her as dangerous,
lazy, incompetent at work, unable to be a family member that fulfills his or her social
obligations. Different fears and prejudicial judgments may be in the foreground of
stigma in different cultural settings: what is common is that the negative opinion
will stay stable even after all the symptoms of the disease have disappeared and
after it has been possible to show that the individual concerned can work and fulfill
his social roles at least as well as his fellow citizens.
That stigma exists and that it is pernicious is gradually becoming accepted (Link
et al., 1992). This growth of awareness is however only rarely accompanied by the
commitment or at least willingness to do something about diminishing stigma and
its consequences.
The reasons given for inaction by mental health workers (and by others who
should be concerned with stigma) are varied. Some say that they are too busy,
others that individuals cannot change stigmatization. Still others state that stigma
linked to mental illness is not very different from the stigma attached to other
illnesses and therefore only a comprehensive programme which is beyond their
reach can make sense.
xiii
xiv Introduction
The different voices of stigma and discrimination

During the course of the programme in interviews, in focus groups and more
public forums, those living with the illness and their families have described many
different ways stigma and discrimination is manifested:
From India: ‘My parents support me but we can’t tell any of our neighbors. It
would hurt my sister’s chances of being married.’
From Canada: ‘If I apply for the job and tell them I have schizophrenia, I won’t be
hired. If I don’t tell them and they find out, or I suffer a relapse later, I will be fired.’
From Japan: ‘Women with an illness like this will be kept at home to do domestic
chores, while we men are sent out of the house.’
From the United Kingdom: ‘[T]he only way I found out the doctors had diagnosed
me with schizophrenia was because I managed to read it upside down on my
medical notes! No one had told me and finding out that way was very frightening.
I felt very alone.’
From the United States: ‘The doctors left me waiting in the emergency room,
fighting my delusions for six hours; they said other people’s problems were more
serious than mine.’
The Global Programme of the World Psychiatric Association
In 1996, the World Psychiatric Association undertook a programme to address

the stigma and discrimination because of schizophrenia. At a meeting in Geneva,
Switzerland, 38 psychiatrists from more than 20 countries and representatives from
consumer groups discussed ways to address the barriers to proper treatment, the
difficulties with reintegration, and how best to address the human rights of those
living with the illness and of their families.
Collectively, the group agreed to three guiding principles for the programme:
• to survey individuals living with the illness and their family members about the
experience of stigma and discrimination, and where possible encourage their
active participation;
• to encourage the participation of individuals throughout the community
whether in health care, government or private enterprise – everyone was
welcome;
• to ensure this was a long-term effort, rather than a brief campaign.
To start the programme it was necessary to develop guidelines and manuals.
Initially, these would be drafts which would be improved upon in the course of
time. To produce those materials the Steering Committee established four other
groups:
xv The Global Programme of the World Psychiatric Association
The Treatment Committee was charged with compiling the latest information
on the illness and the variety of treatment options available. For the first year,
the head of this group was the Italian psychiatrist, Mario Maj. In 1997, Wolfgang
Fleishhacker of Austria stepped into that role.
The Reintegration Committee, chaired by Julian Leff of the UK, was to examine
results of research done on reintegrating individuals back in society.
The Stigma Committee, the largest of the four groups, surveyed the manifest-
ations of stigma and discrimination because of schizophrenia in different cultures
and countries. Richard Warner from the US directed the efforts of that group.
Finally, while the programme’s Steering Committee oversaw the interworking of
the groups, the Review Committee would review the documents produced by the
groups.
After reviewing the evidence and relevant facts, the groups produced a single vol-
ume on schizophrenia. The volume was written in the style of an encyclopedia entry,
easily readable and based on evidence. The volume was annotated with remarks
indicating sections particularly relevant to fighting stigma. This volume was meant
to provide a central compendium of the latest scientific information on schizophre-
nia for the media and programme participants. This volume has been translated
into Spanish, Polish, Italian and Japanese. In Spain, it has been published as a book.
The groups next produced a step-by-step guide for implementing an anti-stigma
programme. The group understood that most of the implementers of the pro-
gramme in individual countries would have had little or no experience in addressing
public awareness or changing public opinion and wanted to provide guidance on
social marketing efforts. That volume was drafted by Dr Sartorius and Dr Hugh
Schulze with the help of Dr Warner, and reviewed by the Steering Committee and
other experts, such as communication professionals. It is designed to assist psychi-
atrists and other mental health professionals in assembling a Local Action Group,
setting measurable goals and objectives, and identifying key target groups for the
programme. The guide includes suggestions on how to hold a press conference,
write a press release, and numerous other practical tips. After years of its use, the
volume has been further developed through the creation of a Manual with prac-
tical suggestions based upon the experiences of the programme and use of the
volume.
The steps outlined in that initial volume take Local Action Groups roughly 12 to
18 months to implement – from initial planning meetings to full implementation.
Over the years, a number of general principles have emerged that have applied in
all countries:
• The programme’s goals should be based upon information obtained from

patients and their families in the culture in which they live.
xvi Introduction
• The programme should be directed at particular, defined target groups.

• The programme should be undertaken first in areas in which success is likely in
the short term to encourage all participants.
• The programme should include active participants willing to stay with the
programme for at least 2 years.
• The Local Action Group should develop a plan of action and invite leading
personalities in the country to join the programme’s support group.
• The programme will place all of its experience and funding at the disposal of
other programmes participating in the global effort, and in turn rely upon their
resources when and where necessary.
• When identifying select target groups it is important to have an individual from
that particular target group on your team – not only can they provide insights
on the best way to address their peers, but recommendations on individuals and
groups you may be unaware of.
• For national programs, a group composed of representatives from the different
cities or regions is important to ensuring coordination between the groups and
amortizing costs overall.
• In general, the more targeted the intervention – in terms of messages and media
directed to identifiable individuals or a group – the more effective the effort will
be. (We will see examples of this in the Canadian Pilot Study.)
The volume also contained practical suggestions such as the creation of a project
log, establishment of regular meeting times and other suggestions for maintaining
group cohesion. Examples from both volumes are listed in the appendices of this
book.
Since that first meeting, more than 20 countries have undertaken nearly 200
anti-stigma interventions. As we will see, these interventions were directed towards
well-defined target groups in an effort to address different parts of the vicious
cycles that lead to discrimination and prejudice.
The WPA and Local Action Groups in different countries have published journal
articles and reports on the on-going efforts around the world. They have also made
presentations at major scientific meetings, conferences and congresses. This book is
intended to gather the latest data from all of these efforts and provide insights into
how each initiative was developed in a particular country through the cooperation
of men and women from a wide variety of backgrounds.
What sets this programme apart from other anti-stigma initiatives is both its
international nature – whereby groups in different countries were able to share
best practices – and the collaborative nature of the Local Action Groups. Following
guidelines set out by the WPA Global Programme and refined in other countries,
these groups bring together psychiatrists and other mental health professionals,
xvii The Global Programme of the World Psychiatric Association
journalists, politicians, schoolteachers, and perhaps most notably, those living

with schizophrenia and their family members as well.
The First International Conference on the Stigma and Discrimination because
of Schizophrenia was held in Leipzig, Germany in 2001. In 2002, further findings
were presented at the WPA Congress in Yokohama, Japan, a logical consequence of
the fact that the Global Programme against Stigma is one of the five Institutional
Programmes of the WPA. A Second International Conference was held in Kingston,
Ontario in Canada in 2003. It is expected that further conferences dealing with the
work against stigma and its consequences will take place and that they will allow an
exchange of experience at the same time as an encouragement to those participating
in the programme and others that will join them.
Structure of this Book
The opening chapter provides an overview of the challenge and methodologies used
to fight stigma and discrimination. The following chapters provide country-specific
reports on interventions undertaken following the WPA guidelines. These have
been organized more or less chronologically in four phases. Phase I, which involved
the first use of Volumes I and II of the programme materials, was undertaken in
1997 in Calgary, Canada. Phase II was an extension of the programme to Spain and
Austria. Phase III included other European countries such as Germany. Phase IV
was programme implementation in other countries.
Each chapter concludes with a list of articles relevant to the anti-stigma efforts
in that country. The final chapter includes a list of recommendations and cautions
relevant in undertaking such a programme. In Appendix I, the reader will find
Volume I of the programme – a step-by-step guide to planning and implementation.
Appendix II contains sample pages from Volume II, which contains information on
the diagnosis and treatment of schizophrenia, along with a section devoted to the
stigma and discrimination associated with the illness. We have also included the
instruments for surveys of knowledge and attitudes that were used in the Calgary
Pilot Study in Alberta, Canada.
Additional information is available at the programme web site:
www.openthedoors.com
Those interested in starting a programme against stigma should contact:
Professor Dr Norman Sartorius
14 chemin Colladon
1209 Geneva, Switzerland
Tel: 41 22 788 2331
Fax: 41 22 788 2334
E-mail: mail@normansartorius.com
Please note that those who join the WPA network will be expected to share the
data that they obtain in their work with other participating sites and to follow the
guidelines of the programme. In turn they will be given access to all of the sites’
materials and will be kept informed about the development of the programme.
xix
Participants in the Programme
This programme was developed by experts from many countries, non-government

organizations, associations of patients and their families, as well as government
representatives.
Steering Committee
Norman Sartorius (Switzerland): Scientific Director
Juan J. López-Ibor (Spain)
Julio Arboleda-Flórez (Canada)
Ahmed Okasha (Egypt): Chairman
Hugh Schulze (United States)
Costas N. Stefanis (Greece)
Narendra N. Wig (India)
Treatment Committee
W. Wolfgang Fleischhacker (Austria): Chairman after 5/97
Juan J. López-Ibor (Spain): Steering Committee Representative
Timothy J. Crow (United Kingdom)
Paramanand Kulhara (India)
Jan Libiger (Czech Republic)
Michael G. Madianos (Greece)
Mario Maj (Italy): Chairman through 5/97
Michael O. Olatawura (Nigeria)
Reintegration Committee
Julian Leff (United Kingdom): Chairman
Costas N. Stefanis (Greece): Steering Committee Representative
Marina Economou (Greece)
Wolfgang Gaebel (Germany)
Ulf Malm (Sweden)
Vincent B. Wankiiri (Uganda)
xxi
xxii Participants in the programme
Stigma Committee
Richard Warner (United States): Chairman
Narendra N. Wig (India): Steering Committee Representative
Anthony W. Clare (Ireland)
Sue Ellen Estroff (United States)
Julio Arboleda Flórez (Canada)
Robert Freedman (United States)
Semyon Gluzman (Ukraine)
Trisha Goddard (Australia)
Driss Moussaoui (Morocco)
Michael Phillips (China)
Everett M. Rogers (United States)
Corinne L. Shefner-Rogers (United States)
Review Committee
Wolfgang Gaebel (Germany): Chairman
Heinz Häfner (Germany): Chairman to 2001
Norman Sartorius (Switzerland): Steering Committee Representative
Istvan Bitter (Hungary)
Giovanni de Girolamo (Italy)
R. Srinivasa Murthy (India)
Ahmed Okasha (Egypt)
Charles Pull (Luxembourg)
Wulf Rössler (Switzerland)
Pedro Ruiz (USA)
Mitsumoto Sato (Japan)
Harold M. Visotsky, deceased (United States)
Greg Wilkinson (United Kingdom)
ex officio Review Committee Members

W. Wolfgang Fleischhacker (Austria)
Julian Leff (United Kingdom)
Richard Warner (United States)
Chairpersons and Advisors of Local Action Groups
Each chapter of this book is dedicated to a different initiative in a different country.

At the end of each country report, we will list many of those who have helped make
those programmes a success. Here, we wish to acknowledge those heads of sites
xxiii Participants in the programme
instrumental in bringing the results to this book. Contact information for individ-
uals and Local Action Groups are given at the end of appropriate chapters. (Like
the chapters themselves, the countries are listed in chronological order roughly
corresponding to when the initiatives were begun.)
Canada Julio Arboleda-Flórez and Heather Stuart

Spain Juan J. López-Ibor and Olga Cuenca
Austria Werner Schöny and Wolfgang Fleishhacker
Germany Wolfgang Gaebel and Anja Baumann
Italy Guiseppe Rossi
Greece Costas Stefanis and Marina Economou
United States Richard Warner
Poland Andrzej Cechnicki and Anna Bielánska
Japan Mitsumoto Sato
Slovakia Pětr Nawka
Turkey Alp Üçok
Brazil Cecilia Villares
Egypt Tarek Okasha
Morocco Nadia Kadri and Driss Moussaoui
United Kingdom Graham Thornicroft and Vanessa Pinfold
Australia Barbara Hocking and Alan Rosen
Chile Carlos Caceres Gonzalez
India R. Srinivasa Murthy and R. Thara
Romania Raluca Nica
Acknowledgements
This programme would not have been possible without the generous support of
many people living with schizophrenia and their families in more than 20 coun-
tries around the world, including the family associations that support them. The
programme has also been supported by medical and psychiatric institutions, and
other agencies many of whom are listed in the appropriate country reports.
We would also like to thank Eli Lilly and Company who have generously
supported both the international effort and local initiatives in some countries.
The authors would also like to thank Josette Mamboury in Geneva, Switzerland
and Melissa Woods in Chicago, United States for their invaluable assistance in this
programme over the years.
xxv
1
Developing the Programme
The World Psychiatric Association (WPA) Global Programme against Stigma

and Discrimination because of Schizophrenia was started in 1996 when I became
President of the WPA. Initially, we saw it as a policy initiative, not as a specific
programme.
My colleagues from the Executive Committee of the WPA (in particular, Pro-
fessor Juan Jose Lopez-Ibor, then President-Elect of the WPA) and I spoke with
possible supporters of an operational arm to the anti-stigmatization policy, includ-
ing staff of foundations, government agencies, directors of health programmes and
representatives of pharmaceutical companies.
While many lauded the initiative, few expressed an interest in joining the effort
and even fewer were willing to contribute to a programme in a concrete way.
Not so Mr R. Postlethwaite, at the time Vice-President and Director of the Neu-
roscience Department of the Eli Lilly and Company. He, like others expressed
his strong approval of the idea but also sought support from within his company.
Dr M. Xilinas, at that time working with Eli Lilly and Company in Geneva, provided
invaluable help in the administrative arrangements that followed and WPA soon
received a formal confirmation that Eli Lilly would provide some funds to support
the initiation of the programme. This enabled us to start the Global Programme and
to help its development in the first set of countries that were keen to join the effort.
Thus, in 1996 we brought together a group of people whom we felt could help in
the development and implementation of a programme against stigma. The group
that met in Geneva included psychiatrists, social scientists, communication experts1
as well as representatives of family and patient organizations, and government rep-
resentatives. It reviewed the preliminary plans for the programme, and identified
individuals and organizations that could be focal points for its development at
country level. The group was invited to address several key, strategic questions
including the following:
1 Among them Mr H. Schulze who remained fully involved with the programme throughout and is a
co-author of this book.
1
2 Developing the programme
1 What conceptual framework should the programme adopt?

2 Should the programme be directed to stigma related to a particular disease or to
mental illness in general?
3 Who should carry out the programme on a national level?
4 How should the activities composing the programme be selected?
5 What administrative structure should the programme have? Should it be man-
aged by the WPA Executive Committee, outsourced to an agency independent
of WPA or carried out by some other arrangement?
6 How long should the programme last?
7 What relationship should be established with other anti-stigma activities under-
way at the time or initiated at a later date?
8 How should the success of the programme be evaluated?
The guidance received from the group concerning these issues was invaluable in
the finalization of the plans for the programme. These will be briefly reviewed,
under the headings of the questions presented above.
What conceptual framework should the programme adopt?
Since the early work by Erving Goffman on stigma (Goffman, 1963), many defi-
nitions of stigma have been put forward. For the anti-stigma work of the WPA,
elements of earlier research and experience were synthesized into an operational
model that describes the vicious cycle of mental illness, its stigma and consequences
(Sartorius, 2000).
This model has several advantages. First, it acknowledges that ‘stigma’ should
be viewed as one of the important disadvantages created by illness and making it
more severe. Second, it stresses that stigma is part of a vicious circle and that it will
continue to grow unless the circle is interrupted.
Third, and this is perhaps most important, the cycle identifies access points
where interventions might be undertaken and where there is room for action by
professionals, social services, hospitals and community agents. The model further
shows that there is no one who could not contribute to fighting stigma and its
consequences.
The vicious cycle of stigmatization

The model implies that a marker (a visible abnormality) that allows the identifica-
tion of a person can be loaded with negative contents by association with previous
knowledge, information obtained through the press, and memories of things seen
in movies or heard in the community.
Cycle of stigmatization for the individual.
Once the marker is loaded in this way, it becomes the stigma and anyone who has
it will be stigmatized. Stigmatization may lead to negative discrimination which
in turn leads to numerous disadvantages in terms of access to care, poor health
service, frequent setbacks that can damage self-esteem, and additional stress that
might worsen the condition of the consumer, and thus amplify the marker, making
it even more likely the person will be identified and stigmatized.
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 focus on removing discrimination by legal and other means.
In other instances, it might become possible to improve treatment and rehabili-
tation services to a level at which they can offer help to the consumer and the family,
and support them in living with the illness. Sometimes it is possible to remove the
marker – as in the case with extra-pyramidal symptoms that can appear as side-
effects of certain type of medications, but do not appear with other treatments. 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.
A similar cycle can be constructed for families and caregivers. Yet it differs in
significant respects.
The shame, guilt and worry that family members can feel adds to stress on the
group. This might be just the parent and the child with the illness or encompass
a much larger extended family, close friends, coworkers and/or neighbours. The
increased stress may reduce the individual’s or group’s reserves – in terms of emo-
tional and often financial resources, and in terms of time that can be spent with
members of the family who are not suffering from the illness. The reduced reserve
Cycle of stigmatization for the family.
means that family members will have less support in times of need and that as a
consequence links among family members can be broken or perhaps even irrev-
ocably severed. This increases the stress for all members of the family or social
unit which may lead to a relapse or reappearance of the stigmatized illness. In a
manner similar to the circle described for the person with the illness, the family
may also lose self-esteem and confidence in itself which makes care more difficult
and possibly less effective for those members of the family with the illness.
Cycle of stigmatization for mental health services.

Mental health professionals may not be surprised to see this vicious cycle
mirrored in the area of mental health services as well.
Family members and those who have developed early symptoms of the
schizophrenia, may avoid seeking psychiatric help for a variety of reasons. This
may be due to misunderstandings about the illness, its course or the treatments
that might be used. But as a number of groups in the WPA programme found in
country after country, this may also be due to previous stigmatizing experiences
(e.g. dismissive treatment in a hospital emergency room that might include
accusations in front of family members of the use of illegal drugs).
Whatever the reasons, by not seeking early treatment, patients may later be
admitted involuntarily often with severe forms of acute psychosis. As a conse-
quence, the psychiatric unit or emergency room can come to be seen by other
hospital officials and by the population as a holding area for ‘problem patients’
for whom psychiatric care can do little.2 The deterioration in reputation of the
services in the hospital leads to a reduction of funding.
With a reduction in funding comes a deterioration in services and increasing dif-
ficulty to maintain or hire good-quality staff. Poor performance by staff contributes
to the overall negative perception of the psychiatric service. As the reputation of
the service deteriorates, as word spreads of these poor services, those who may
be experiencing early symptoms – or their family members – further stigmatize
psychiatric services and delay treatment, perpetuating the vicious cycle.
The impact of the cycles we have described extend beyond those immediately
involved at each stage. These cycles reinforce stereotypes, increase cynicism in
members of the community, and further diminish hopes of those living with mental
illness that things will improve.
These cycles of stigmatization are not isolated from each other. A family that has
lost hope and self-esteem will find it more difficult to seek help and realize its right
to help. This will not only worsen the situation but also contribute to the perception
of weakness of the family and all of its members, and lessen their ability to become
active participants, along with the healthcare professionals, in the recovery of the
family member with schizophrenia.
These interrelated cycles of stigma and discrimination because of mental illness
illustrate specific points for intervention. The next question becomes one of how
finely focused the interventions should be.
2 With the current tendency to reduce the number of in-patient facilities, it is often necessary to admit
severely disturbed chronic patients with comorbid conditions, both physical and mental (e.g. drug abuse).
This further reduces the number of beds available to the service and heightens the threshold for admis-
sion for those with early forms of illness who would particularly benefit from appropriate help and
treatment.
Cultural differences between industrialized and

developing countries
In the 1970’s, the World Health Organization (WHO) carried out a major
international collaborative study on Schizophrenia (International Pilot Study of
Schizophrenia, IPSS and WHO). The study demonstrated that schizophrenia could
be found in all nine countries studied (US, UK, India, Colombia, Nigeria, Denmark,
Czechoslovakia, USSR and China); that the incidence of schizophrenia did not
show much difference among countries, and that the course and outcome of
schizophrenia was better in developing than the developed countries. Other
studies undertaken in the same countries (and some others) confirmed these
findings (WHO 1979, Sartorius 1996). The explanation of these findings evaded
the investigators: they examined the frequency of stressful events for patients and
expressed emotions of family members but the new findings did not help. It
might be that the different forms and levels of stigmatization in Third World
countries made the difference. It is hoped that a study to explore this hypothesis
will be carried out.
Focus on schizophrenia or on mental illness in general?
There are strong arguments for either 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 favor 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 of a campaign?
The WPA programme decided to take only schizophrenia as a focus for the
programme. The arguments for it are 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 illness 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, say, to anxiety states
or dementia of old age. A success in the prevention or removal of stigma related to
schizophrenia would show the way to those fighting to remove the stigma of other
mental illness and indeed of other stigmatizing illnesses (e.g. leprosy or syphilis).
7 How should the activities of the programme be selected?
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 at the time no coordinated international project by a
professional or governmental organization that dealt with the disease and could
attract the attention of the government 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.
Who should carry out the programme on country level?

Experience from previous studies and in particular from the international studies
on schizophrenia one of us (Norman Sartorius) had coordinated while working
at the WHO strongly suggested that the guarantee for a success of a study or
other project at country level is not the commitment of the government or of an
institution but the decision of an individual or of a small group of people to carry out
the project. The support of the institutions and governmental agencies is helpful and
often necessary but never sufficient. The programme thus expanded to countries
in which there was a small group of people willing to lead the action and maintain
it over years.
The groups that we sought were to be small. As a rule of thumb, we said, the
group should be a size that would allow it go for a meal together in 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 the
Advisory Group for the programme and were likely to be willing to meet at regular
intervals (but not too frequently) to receive reports of the action group and to help
it by advice, comment and influence to carry out the programme.
How should the activities of the programme be selected?

The advice of the group at the Geneva 1996 meeting was to develop a set of specific
plans that would be offered to the action groups in the countries together with an
estimate of the time necessary and allowable for the execution of each activity in the
plan. This would essentially be what has been described as a collaborative project
(Sartorius and Helmchen, 1981). It was felt that this would help to maintain the
identity of the programme and facilitate the exchange of experience and evaluation.
As it turned out this advice was neither realistic nor very helpful. Consultations
with the potential heads of action groups in the countries and with others involved
in similar work indicated that a different strategy was necessary. This new strategy
seemed dangerously similar to a plan for confusion as it turned out it became a

hallmark of the programme and its most useful feature.
In brief, the strategy of the programme became the reliance on the advice
of persons most directly concerned with problems related to stigmatization and
discrimination. In each of the sites the first step of the action groups was an explo-
ration of consequences of stigma and discrimination for people with schizophrenia,
their families and others who were involved in the provision of care and in the
rehabilitation of those disabled by schizophrenia and its consequences. This pre-
liminary exploration usually resulted in a long list of complaints and problems
reported by those concerned. The action group then examined the reports and
divided them into those that were due to stigma and discrimination, and others
that had little to do with them. Among the former group of problems the action
group selected targets for action using several criteria: the probability that the
problem can be resolved relatively quickly (the more difficult to resolve the less
attractive was it for the programme, particularly in the beginning), the likelihood
that the problem can be tackled by the action group (with the support of the Advi-
sory Group), the availability of support for work on that problem – either in the
form of influence or concrete support of an institution or agency.
The results of proceeding this way were that the programme sites have selected
different targets for action and that the speed of their progress varies. This might
be seen as a disadvantage, particularly for reporting about the programme and for
its evaluation. These shortcomings are however significantly outweighed by the
fact that it is easier to find support for the programme that is locally relevant, and
that the action group and other participants in the programme knew that they
were working on problems that were particularly important for their area. A moral
advantage of this way of proceeding was also that action was harmonious with
a main objective of the programme – that of contributing to the self-esteem of
persons affected by schizophrenia by giving them an opportunity to decide on the
course of action and participate in it, thus treating them as equal and making them
partners in the programme development.
What administrative structure should the programme have?
The administration of a large-scale programme must be in a single location and

the coordinating office has to function continuously from the same place. In view
of the fact that the central office of the WPA was traditionally moving to the
home site of the Secretary General, the office of the Global Programme against
Stigma was separated from the WPA Secretariat and placed in Geneva. A Steering
Committee of the programme was created to give its strategic guidance and stream-
line activities. It was chaired by the President of the WPA and composed of five
9 How long should the programme last?
persons, of whom one was the Scientific Director of the programme. The Office
of the programme maintained close collaboration with the Secretariat of the WPA
that was also keeping the accounts and ensured auditing. The Steering Committee
created four working groups (listed on page xv) dealing with:
1 the distillation of knowledge about schizophrenia and its treatment,
2 the rehabilitation of the patient, and the diminution of stigma and discrimina-
tion in the immediate surroundings of the patient,
3 stigma and discrimination in society at large,
4 the review of materials produced by the other three groups.
A web site was created in 1998 to leverage the information already developed and
also to provide a global ‘brand’ – a unified look-and-feel – for the overall effort.
The chairpersons of the action groups in the countries functioned as the parlia-
ment of the programme in that they examined, discussed and approved proposals
for programme activities reaching across the sites.3 An instruction guideline was
drafted giving a sequence of steps in the programmes at country level. (See
Appendix I.) The sequence – for example concerning the formation of the action
group, the collection of information, the establishment of the Advisory Group –
was recommended for all sites: the timing of the steps as well as the selection of
activities at country level was left to the decision of the Local Action Groups and
their partners. Annual meetings of all the Heads of sites and biannual meetings
of the Steering Committee often together with the Chairpersons of the working
groups also served to facilitate the coordination and conduct of the programme.
How long should the programme last?
The Geneva meeting was divided on that question: while some thought that the
programme should have the nature of a campaign lasting at the most 2 to 3 years,
others felt that the programme should have a longer perspective. The advocates
of the former drew attention to the fact that the funding available to the pro-
gramme were very limited and that planning for a long-term project without a
secured source of funding and a strong institutional backing would be an exercise
in vain. The advocates of the longer perspectives drew attention to the need for a
lasting engagement in all efforts aiming to change attitudes and to the fact that the
initiation and conduct of international projects takes a much longer time than
activities at a one-country level.
In reality, and to the surprise of many, the programme continued growing and
becoming stronger over the years. Now in its tenth year of existence the programme
3 For a listing of members of the Steering Committee, Working groups and Heads of sites, see xxi–xxiii.
still strongly attracts new groups and is expanding its activities. In some of the sites
the tempo diminished, for a variety of reasons – personal, financial and political.
The unavoidable attrition has however been much less serious than feared. The
recognition of the fact that the decrease of stigmatization and discrimination needs
a long time and that short campaigns can bring more disappointment and problems
than no campaign at all also contributed to the credo that a programme against
stigma must be planned to last for a number of years, much longer than other
activities in the field of health.
What relationship should there be with other efforts dealing with

problems of stigma and discrimination?
The WPA programme had the advantage that it could examine a variety of efforts
to combat stigma and discrimination because of mental illness in various coun-
tries. Some of them were directed against a specific illness, others had a broad
focus. Some dealt with mental illness only and others with increasing tolerance
for those who are different. Most of them were short lasting, some had a solid
backing of an institution or an organization, and others started independently and
worked without much support. Each of these actions against stigma contained
some useful message or experience that could be employed in building the WPA
programme: none however was sufficiently close to it to require fusion or other
arrangements nor was there much competition for funds or other resources with
these programmes. The Geneva meeting therefore recommended that the WPA
programme staff should assemble descriptions of as many programmes against
stigma and discrimination as possible and ensure an exchange of information with
those that were active. Making an effort to include already advanced programmes
under the aegis of the WPA did not seem fair to those who developed their pro-
gramme – because they might lose some of their visibility – nor useful to the WPA
programme which had to develop its own strategy and tactics being, potentially
the largest and most innovative programme in existence.
How should the programme be evaluated?
The question of evaluation of success attracted much attention during the Geneva
meeting. The usual comparisons of achievements with the objectives seemed
appropriate in some instances but not in others. The essence of the WPA
programme was that it was not a multinational study but an action programme
and a model from which others could learn. The second of these aims imposed the
need for evaluation of the success of each of the component activities so that those
who wanted to learn from the WPA effort could select those of proven usefulness
11 References
in another setting. The former objective of being an action programme carried

however two other obligations with it: first, that progress should be measured
by the extent to which activities against stigma and discrimination became part
and parcel of the routine health and mental health programmes; and second that
those who have identified problems and difficulties because of stigmatization and
discrimination – persons suffering from schizophrenia and their carers – see that
some of the difficulties diminish and some of the problems related to stigma that
they had vanish.
Snapshots of a dynamic programme

The nature of a Global Programme underway in different countries on different
continents is that each report from any one country will be a snapshot of results
to date. As this book was being produced, new efforts were underway for
establishing Local Action Groups in Zambia, the Czech Republic and
Switzerland.
A significant amount of research has been conducted in the last few years on
stigma and mental illness by Professor Wülf Rossler and others in Switzerland
(Lauber et al., 2001; Nordt et al., 2003; Zogg et al., 2003; Lauber et al., 2004).
In 2004, Beate Schulze, whose work with the anti-stigma efforts in Germany,
Italy and Slovakia is described later in this book, joined Dr Rossler in Zürich,
Switzerland and a Local Action Group has been formed to begin to develop
interventions based upon the WPA Global Programme model. These efforts and
others are on-going.
The interventions and results presented in this book represent nearly a decade’s
worth of work in 20 countries. While each Local Action Group developed a
programme based upon country- and site-specific challenges of stigma and
discrimination, this international approach has allowed us to determine clear
patterns and similarities, and provide recommendations for other individuals and
groups who seek to fight the stigma and discrimination because of schizophrenia,
in particular, or mental illness, in general.
REFERENCES
Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Engelwood Cliffs,
Prentice Hall.
Lauber, C., Diebold, H.S. and Rossler, W. (2001). [Attitude of family of psychiatric patients
to psychiatric research, especially to early detection of schizophrenic psychoses.] [German].
Psychiatrische Praxis, 28(3), 144–146.
Lauber, C., Nordt, C., Falcato, L. and Rossler, W. (2004). Factors influencing social distance
toward people with mental illness. Community Mental Health Journal, 40(3), 265–274.
Nordt, C., Muller, B., Lauber, C. and Rossler, W. (2003). Increased stigma through a former stay
in a mental hospital? Results of a public survey in Switzerland. Psychiatrische Praxis, 30(7),
384–388.
Sartorium, N. et al. (1996) Long-term follow-up of schizophrenia in 16 countries. [A description
of the International Study of Schizophrenia conducted by the World Health Organization.]
Social Psychiatry and Psychiatric Epidemiology, 31(5), 249–258.
Sartorius, N. (2000). Breaking the vicious cycle. Mental Health and Learning Disabilities Care,
4(3), 80.
Sartorius, N., Helmchen, H. (1981). Aims and implementation of multicentre studies. Modern
Problems of Pharmacopsychiatry, 16: 1–8. Basel, München, Paris, New York: Karger.
WHO (1979). Schizophrenia: An International Follow-up Study. New York: John Wiley & Sons.
Zogg, H., Lauber, C., Ajdacic-Gross, V. and Rossler, W. (2003). [Expert’s and lay attitudes towards
retrictions on mentally ill people.] [German]. Psychiatrische Praxis, 30(7), 379–383.
Phase I
Calgary, Alberta, Canada

2
The Canadian Pilot Site
On 16 September 1997, the World Psychiatric Association (WPA) held a press

conference during a meeting of the Canadian Psychiatric Association in Calgary,
Alberta. The press event was to announce that Calgary would be the pilot site of the
global programme to fight stigma and discrimination because of schizophrenia.
Three psychiatrists spoke to journalists about the importance of fighting stigma
and discrimination – not only as an issue of social justice but as imperative to effect-
ive treatment of schizophrenia. Then, a young woman, by the name of Michelle
Miserelli, stepped to the podium and introduced herself as a consumer and a
mother who had been invited to speak about the challenges first hand.
‘When I first announced that I was pregnant,’ she told the attendees,‘my mother’s
friends asked “When is the abortion going to take place?” That’s stigma, a big
stigma.’ Save for the sound of video cameras and recording equipment the room
fell silent. She went on to talk about her 7-year-old daughter. She talked of the
challenges of finding a job. ‘If I tell an employer I have schizophrenia, I won’t get
the job. If I don’t and the employer finds out later, I could be fired.’
For some of the journalists in attendance, it was the first time they had heard an
individual with schizophrenia admit to the illness and describe the discrimination
she faced. Working with journalists would remain a key element of the efforts of
the Local Action Group in Canada.
Calgary, Alberta
Calgary is located in the Western Canadian province of Alberta. In 1997, its popu-
lation was roughly 900,000 – most of those are descendents of immigrants from
Europe. The rest being immigrant communities from the Asia-Pacific region. Situ-
ated east of the Rocky Mountains and west of the badlands and hoodoos of
Drumheller Valley, the city was completely transformed when oil was discovered in
the region in the 1970s. Within a decade, the town that had been known primarily
for its annual rodeo, called the Calgary Stampede, became the Canadian centre for
the energy industries and the financial centre of Western Canada.
15
16 The Canadian pilot site
Calgary was selected as the Pilot Site of the programme for programmatic and
pragmatic reasons:
• Canada has well-developed mental health services. Groups in Canada such as
the Schizophrenia Society were already involved in combating discrimination. It
was thus reasonable to expect that success of the anti-stigma effort would mean
that the WPA programme has the potential to make a positive impact even in
highly developed countries with well-organized services.
• Professor Julio Arboleda-Flórez, the Local Action Group leader, and his wife,
Heather Stuart, were both members of the Stigma Committee and held posts
at the University of Calgary. Dr Arboleda-Flórez was Professor and Head of the
Forensic Division and Dr Stuart was Associate Professor in the Department of
Community Health Services and Epidemiology.
• The educational and healthcare systems were deemed strong. Literacy rates are
generally 99% in the urban regions.
• Local consumer and family support systems were also present and strong.
• It was easy to identify a control group to examine whether the programme in
areas with fewer health services. A collection of nearby communities to the east
in Health Region 5 afforded an excellent opportunity. The town of Drumheller,
located in Health Region 5, has a population of 5000.
• Representatives of the Drumheller area and from the provincial capital of
Edmonton were also active participants in the Local Action Group. Those from
the Drumheller area would help implement the programme in their community;
those from Edmonton would prepare the province for expansion of the pro-
gramme to another major urban centre and facilitate work with the provincial
government.
• The city also had a variety of media outlets with some national exposure to
reach the general public: more than 30 radio stations, three broadcast television
stations, cable television, local and national newspapers, as well as opportunities
for billboards and transit cards.
The Canadian Local Action Group first met in June 1997. Over the course of
the next 18 months, the group would number 28 members. At any one meeting,
however, 14 to 18 members were in attendance.
Professor Arboleda-Flórez assembled individuals from a broad range of areas:
two Faculties of Medicine in the Province, academicians associated with the local
Day Hospital, officials from the Department of Health of the Government of
Alberta and the Alberta Provincial Health Board, as well as Regional Mental Health
Service advisors. He also invited a journalist from Calgary’s largest circulation
newspaper. The involvement of a member of one of the target groups would become
an important factor in the success of this and other country interventions. A local
17 Calgary, Alberta
representative from Eli Lilly and Company, which provided some funding for the
programme, volunteered his time as did all the members of the Local Action Group.
Individuals living with schizophrenia from the Schizophrenia Society of Alberta,
the Calgary Clubhouse Society, and the Canadian Mental Health Association par-
ticipated in the Local Action Group. Representatives from several of these groups
were meeting for the first time. As part of a global initiative, groups that had not
been actively working together had found common ground, after many years of
working separately and sometimes at cross purposes. This would be a dynamic of
programmes in other countries as well (e.g. the UK).
The first major task undertaken by the Local Action Group was the development
of a survey instrument. The goal was to establish benchmarks for knowledge and
attitudes before and after the initial intervention. This research would also serve to
shape messages and media selection.
Results from the pre- and post-test results have appeared in several academic
papers. One point to stress in the strategic approach to addressing the stigma and
discrimination because of schizophrenia was that in Canada a focus was placed on
measuring and changing attitudes. In subsequent interventions in other countries,
focus shifted to assessing the experiences of those living with schizophrenia and
on actions to directly diminish discrimination and its consequences rather than
changing attitudes.
A telephone survey was conducted in August 1997 of 600 households in
Calgary, and 400 households in the Drumheller region (98% of the homes have
telephones). The questionnaire (presented in Appendix III) inquires about an
individual’s knowledge of the causes of schizophrenia and his or her attitudes
toward that individual through questions of social distance. This includes ques-
tions such as ‘Would you feel afraid to have a conversation with someone who had
schizophrenia?’
Eighty percent of those surveyed said that ‘schizophrenia did not touch’ their
lives. Overall, however, the Calgary population appeared knowledgeable about
schizophrenia and expressed generally low-perceived stigma, a fact which ulti-
mately may have made the efforts of the group more challenging. The programme
began with the bar already set high.
With results of the research tabulated and the official announcement made at
the press conference, the group was ready to create a communication plan.
First, the Calgary Local Action Group identified specific target groups. The tar-
get groups were: Health Care Professionals (including emergency room personnel,
medical students, senior health care policy-makers and general health profession-
als); Teenagers in grades 9 and 11; Community Change Agents (such as the clergy,
business community leaders and journalists); and finally, messages directed to the
general public through the mass media.
Among the 20 different countries that have already undertaken the WPA anti-
stigma programme, the Calgary group began with one of the largest collection of
target groups. While this was in part due to the large size of the group that would
develop and the three regions represented (Calgary, Drumheller and Edmonton),
as a Pilot Programme they also sought to gather as much experiential data as
possible for other groups.
The Local Action Group then split into subgroups to address each different target
audience and the various components of that target audience. These subgroups
were asked to undertake a ‘Zero Budget Exercise’ to explore various communication
channels for their target audiences that did not require a financial investment, such
as the purchase of a mail list or media buy.
At the end of a 4-month process, by December of 1997, the Local Action Group
had mapped out specific interventions for each target audience and a timeline
for intervention. With this communication plan in place and with specific targets
and outcomes identified, individuals of the Local Action Group were then able to
approach potential sources for funding.
In March 1998, Beth Evans, a Local Action Group member who also worked
with the Provincial Mental Health Advisory Board (PMHAB), was able to secure
government funding ($75,000 Canadian). Eli Lilly Canada provided funding for
media purchases. In addition to all of the time volunteered by the group members
(including travel and meetings), Professors Arboleda-Flórez and Stuart provided
meeting rooms and clerical support through the University of Calgary.
The following results are organized relative to the target groups chosen. To better
describe the overall effectiveness of these interventions, we will outline the results
of the efforts within subgroups.
Health care professionals
Emergency room professionals

The group that took on the task of working with health care professionals included
health care professionals and individuals living with schizophrenia. This group
conducted surveys of the opinions of patients with schizophrenia, as well as mem-
bers of the PMHAB and the Alberta Health Authority. Among the findings: while
a presentation of policies governing patient rights was formalized in Calgary hos-
pitals, the Drumheller General Hospital had no policy in place at that time for
presenting a statement of rights to a patient. For example, none of the hospitals
provided a private interview room in the emergency room for psychiatric patients.
The group then submitted the results of this research and five recommenda-
tions (the recommendations are listed in the box opposite) to hospital directors
19 Health care professionals
and emergency room directors. Members of these subgroups discussed the find-
ings with these individuals and then followed up on the progress of these
recommendations.
These recommendations were also submitted to the Canadian Council on Health
Services Accreditation. Today, those five recommendations have been integrated
into the country’s national accreditation process.
The importance of group diversity and consumer input

The health care professionals subgroup was composed of a psychiatrist, members
of the Regional and Provincial Mental Health Advisory Boards, and a consumer.
The consumer representative reported on the first-hand experiences of other
patients who, suffering from acute psychotic episodes, faced stigma upon
entering a hospital emergency room (e.g. doctors and nurses often first assumed
these individuals were suffering from drug overdoses).
By focusing on this specific point of encounter and stigmatizing behaviour, the
group was able to affect one of the greatest changes achieved by the programme,
the adoption of five recommendations as part of the national hospital
accreditation process:
• That the examination and interview process and space are adequate for safety,
security and privacy of patients and staff.
• That there are enough interview rooms available to ensure privacy during
interviews in most situations.
• That those interview rooms are located near or with easy access to hospital
security personnel.
• That security staff are available in a timely, as needed, basis.
• That a policy is in place for governing the use of restraints.
Medical students, senior health care policy-makers and general health professionals
While the results of the intervention in hospital emergency rooms have been clear
and quantifiable, results among the other subgroups of health care professionals
were less pronounced but still positive.
Medical students in Edmonton were exposed to an educational intervention that
featured an anti-stigma video (developed by Johns Hopkins University). The goal
of this intervention was to assess the change in attitudes after approximately 2 h of
instruction. There was an increase of 10% in knowledge and attitudes as measured
by pre- and post-test results. Work to assess whether an increase of knowledge can
be obtained in other ways and whether it is accompanied by changes in attitudes
is still being conducted before full integration of this educational component into
the medical school curriculum.
Two interventions were aimed at senior health care policy-makers. First, a pre-
sentation of the efforts in Calgary and Drumheller was made to the PMHAB, which
resulted in additional funding to continue the anti-stigma work.
The second involved presentations and efforts to achieve at least one policy
change in each of the following areas: housing, employment, income and the
availability of proper drug treatment. As these were not more thoroughly defined
(e.g. what kind of change in employment?) and because numerous groups lobby
both the Regional and Provincial Advisory Boards for such changes, the impact
of the Local Action Group is difficult to assess. For example, while availability of
proper drug treatment has been achieved, whether this was the result of private
company lobbying or the Local Action Group’s efforts is difficult to determine.
For general health professionals, members of the Calgary Schizophrenia Society
had written and produced a play which is performed by individuals living with
the schizophrenia. The drama is called ‘Starry, Starry Night’ after the song by
Don McLean about the life of Vincent Van Gogh. All of the roles – doctor, nurse,
Starry, Starry Night

In the course of the WPA global programme, a number of different Local Action
Groups have undertaken theatrical productions to describe for audiences the
experience of schizophrenia as well as the stigma and discrimination
experienced. Future chapters on Poland and Germany will feature other such
examples.
Here are some of the observations from Fay Herrick, Director of the
Schizophrenia Society of Calgary, on the experience of the ‘Starry, Starry Night’
production in Calgary and Health Region 5:
‘The first performance was huge because we did not know if we could do it.
The cast members were all very nervous and I was really afraid of the scene where
David is crushed by the voices. We had only rehearsed that scene once and every
member of the cast was in tears.
Two other performances stand out in my mind. On October 22, 1999 we
performed the play for 480 people who were attending the Schizophrenia
Conference in Edmonton. Our players were rewarded with a loud standing
ovation that lasted a very long time. This performance brought tremendous
recognition in Alberta for our programme and for our members.
The other very important performance was the performance in Kingston,
Ontario at the international conference in October 2003. This invitation to perform
came at a time when our group really needed a lift. To be invited to perform our
play for people from different countries has given all of our members a sense that
our efforts are worthwhile.’
21 Teenagers: students in grades 9 and 11
mother, girlfriend and the main character, David – are played by individuals living
with the illness. Players read from a script which reduces the stress associated
with memorizing dialogue. The production follows David through the course of
dealing with his hallucinations (a scene in which all the players surround David as
the voices oppressing him), to speaking to the doctor and dealing with side effects
of his medication, to conflicts with his girlfriend and family.
Working with the Schizophrenia Society, the Local Action Group was able to have
the play presented in eight Calgary hospitals and one in the Drumheller region. Six
years after those performances, ‘Starry, Starry Night’ is still performed in hospitals
around the province. It has not been possible to quantify the effect (e.g. changes in
attitudes) of the play in these settings. What is certain is that the performers report
that the participation in the play has given them much in terms of self-esteem and
friendship with other players.
The players also travelled to Kingston, Ontario and presented the play at the Sec-
ond Annual Conference on the Stigma and Discrimination because of Schizophrenia
in October 2003. Attendees assessed it as one of the highlights of the conference,
highly praised by all.
Teenagers: students in grades 9 and 11

The Local Action Group further developed a successful intervention with junior
and senior high school students in Calgary and Drumheller. This target audience
was chosen a priori (i.e. not because this group was identified on the basis of a
survey or qualitative study) bearing in mind that first symptoms of schizophrenia
are often experienced in one’s teen years and that in other studies it could be shown
that changing knowledge and attitudes of children and adolescents had an effect
on their parents and the community as a whole.
The group’s efforts were built upon an existing programme of the Calgary
Schizophrenia Society called the ‘Partnership Programme’. This programme is a 60-
to 90-min presentation given by both a consumer and a family member. Students
are thus given two perspectives on the illness, on its course and treatment and the
stigma and discrimination associated with it.
A good deal of data now exists on the stigma-reducing benefits of first-hand
interactions with those suffering from mental illness. Witnessing these presenta-
tions first hand, it is obvious that students are fully engaged and remain concerned
with what they heard. While certain descriptions of delusions may cause a titter
to ripple through the classroom (one young man related with self-deprecating
humour how he had come to believe the wife of pop star Paul McCartney was
in love with him and was trying desperately to get in touch with him), students
usually have open, frank and respectful dialogues with presenters on issues ranging
from sexuality and the effects of medications to feelings of loneliness (for both the
consumer and family member) and social policy (such as issues of institutionalized
discrimination in housing or health care).
However, getting into schools was at first not an easy proposition. ‘When I first
began calling schools to discuss an educational programme,’ Fay Herrick, Director
of the Calgary Schizophrenia Society, recalls, ‘people would listen politely but when
they heard the word “schizophrenia” they couldn’t get off the phone fast enough. It
took time but gradually, as the good news about the presentation spread, it became
a little easier.’
Affiliation with the WPA global programme helped open a few more doors. The
number of speaker’s bureau presentations in Calgary increased from 10 to 15 per
month. The number of participating junior and senior high schools increased from
31 to 44. While there had been no presentations by the Partnership Programme in
the Drumheller area up to that point, through the efforts of Local Action Group
members Monica Flexhaug, Maureen Drake and Marian Ewing, by fall of 1998, the
Partnership Programme was making five presentations a month. By January 1999,
twelve schools in the Drumheller area were actively participating.
These presentations achieved significant changes in knowledge and attitudes.
In Calgary:
• The proportion of high school students expressing no social distance increased
from 16% to 22%.
• The proportion expressing the highest degree of social distance fell from
13% to 8%.
• The median knowledge score increased from 7 to 8 on a 9-point scale.
• The proportion of students achieving a perfect score increased from 11%
to 19%.
In the Drumheller area:

• The proportion of high school students expressing no social distance increased
from 13% to 32%.
• The proportion expressing the highest degree of social distance fell from
19% to 4%.
• The median knowledge score increased from 7 to 8 on a 9-point scale.
• The proportion of students achieving a perfect score increased from 8%
to 31%.
The figures are indications that change did occur and that it went in the right
direction.
23 The Teens Talking 2 Teens Competition
The Teens Talking 2 Teens Competition
In order to actively involve teenagers in the anti-stigma effort, the Local Action
Group held a competition for junior and senior high school students. Students
were challenged to develop media materials that would inform other teens about
schizophrenia and the effects of social stigma on those living with the illness.
Competitions were held in the Spring and Fall of 1998. (See the sidebar for more
information on the messages and communication tools used.) Students wrote
poetry, shot videotaped vignettes, painted posters and created a web site. During
the Fall of 1998, 35 students from Calgary high schools submitted entries. Teens in
Health Region 5 entered 25 creative presentations.
The mayor of Drumheller and a representative from the Calgary Regional Health
Authority attended the awards presentation in the Drumheller area health region
Getting the message right

The importance of the involvement of people living with the illness in selecting
target audiences and developing messages is important. Similarly, it is important
to have a member of a target group in the Local Action Group (a journalist when
educating journalists; a judge when dealing with the judiciary) and to test
messages with, if possible, a representative sample of the target audience.
The development of posters for the ‘Teens Talking 2 Teens Competition’
provides one notable example. Several different graphical designers put together
a dozen rough concepts for the poster. When these were presented to the Local
Action Group, the adults – all over the age of 25 – voted for the poster shown on
the left below. The cartoon characters were seen as non-threatening, warm and
human. The dialogue balloons were thought to be an engaging way to detail facts
about schizophrenia. On the other hand, the poster at the right, featuring the
human brain, was deemed ‘too edgy, too scary’ and that the depiction of multiple
brains might reinforce misunderstandings of ‘split personality’.
The group agreed, however, to show the posters to a number of teenagers. The
teens overwhelmingly chose the poster on the right. The bright colours and
distressed type matched graphics they were familiar with from MTV and video
games.
Not only was the artwork adopted for the high school poster, but it was also
used as the front cover of the Teacher’s Manual, a special manual that the Calgary
group developed for distribution to teachers. When adults in the group saw the
popularity of the graphical, a request was made to change the contest copy at the
bottom of the poster and use the poster for describing efforts of the WPA global
programme at meeting of the Canadian Psychiatric Association.
Figure 2.1 Two of 12 poster concepts presented for a competition in Calgary junior and senior high
schools. The poster on this page was the one chosen by adults on the Local Action Group.
The poster on the next page was chosen by teenagers in the target audience
25 The Teens Talking 2 Teens Competition
Figure 2.1 (Continued)
in January 1999. Winners of the contest received plaques and cash awards of $100
and $50 (for first place and honourable mentions, respectively).
Six years later, the contest continues in Calgary junior and senior high schools.
Winners are awarded their prizes during Mental Health Awareness Week, when
public figures, such as the mayor participate in the formal ceremony.
The ‘Teens Talking 2 Teens Competition’ was also adopted by the Local Action
Group in Boulder, Colorado. As we will see, winners from this competition have
had their artwork featured on transit cards, placed inexpensively in public buses
along routes to and from area schools as well as on the web site of the Boulder
Community Mental Health web site.
Community Change Agents and opinion leaders

Everett Rogers, in his book Diffusion of Innovations, defines Change Agents as:
an individual who influences clients’ innovation-decisions in a direction deemed desirable by a
change agency… One of the main roles of a change agent is to facilitate the flow of innovations
from a change agency to an audience of clients.
The Calgary Local Action Group sought to target change agents in three groups:
clergy, business community leaders and journalists.
For clergy in Calgary and Drumheller areas, the goals were well-defined: Part-
nership Programme presentations to 20 church congregations and youth groups;
presentations by ten youth groups to their congregations; placement of phone num-
bers for assistance in 30 church bulletins along with a 250-word description of the
stigma campaign; and presentations given to minister groups. The outcome objec-
tives were: to have 10% of congregation members and youth group respondents
report a significant improvement in knowledge and attitudes; for ministers of these
congregations to know the principle symptoms of schizophrenia and to know where
to refer someone with possible schizophrenia or other mental illnesses.
Unfortunately, the results were mixed at best. Presentations were given to five
congregations, six ministers’ groups in Calgary and one large ministers’ meeting in
Drumheller. Pre- and post-testing was inconsistent and ultimately measurement
of how well ministers understood and recalled the information that was presented
is unclear.
Results for business community leaders were disappointing as well. Goals were
set to target both chief executives and human resource departments to make pre-
sentations in their companies and solicit contributions for the anti-stigma effort.
While presentations were made at two Chamber of Commerce meetings and human
resource directors of 15 corporations were contacted, it proved impossible to recruit
a business leader to the Local Action Group, and little or no real measurable progress
was made.
The third target, journalists, achieved significant results. Forty press kits were
mailed to journalists in the region and personal contact was established with 30
of these journalists in Calgary and seven in the Drumheller area. The goal of
27 Who is the general public?
the group was to increase positive news coverage by 10% between calendar 1997
and 1998.
When the final results were assessed, the actual outcome was an increase of 35%
in the number of positive news stories in the local paper with the largest circulation,
the Calgary Herald. A comparison was made in two consecutive 8-month periods
following the campaign, compared to the 8 months prior to the campaign. The
average length of those positive stories increased 16%.
All of this happened in spite of two high-profile headline stories with negative
content associated with schizophrenia: the Unabomber trial in the United States
and a story in the Canadian press of a man who pushed a commuter from a subway
platform in Toronto. During the two 8-month periods following the start of the
programme, stories with negative news coverage associated with schizophrenia
increased 44%.
What accounted for the marked difference between these three groups of opinion
leaders and change agents? The most important reason was the presence of a
representative from the target audience on the Local Action Group. Bob Bragg, a
journalist from the Calgary Herald, worked closely as part of the group, helping to
shape messages and make contact with other journalists. In a series of columns that
immediately followed the press conference in September 1997, he related the first-
person stories of Michelle Miserelli and other individuals living with the illness
and worked to dispel some of the myths and misunderstandings that surround
schizophrenia. In a later chapter, we will see how a journalist had a different kind
of impact on efforts in Saõ Paulo, Brazil.
Neither clergy nor local business leaders were represented in the planning group.
Despite the best efforts of those in the Community Change Agent subgroup, access
to these individuals was limited.
Dr Richard Warner, who would start a programme in Boulder, Colorado a year
later, was able to apply lessons learned in Calgary and achieved good results with the
local business leaders. The results of that intervention are presented in Chapter 8.
Who is the general public?
In the early planning stages of any Local Action Group, it is not uncommon for a
discussion to turn to an anti-stigma programme complete with an all-out media
barrage on television – 30-s commercials produced by directors who have won the
Palme D’Or, speaking engagements with talk show celebrities, news segments on
Fuji Television, CNN and Al-Jazeera. Certainly the dream of broad reach and social
impact is part of even the smallest Local Action Group effort. The efforts of the
Greek Programme in hosting a major concert event with the international diva,
Nana Mouskouri, would never have occurred if the group had not aimed high. But
the realities of financial and human resource limitations often rein in such dreams.
As we will see in the case of Austria, taking a public awareness programme to
television can achieve some tangible results. However, before engaging in such
activities it is important to keep one key point of social marketing in mind: there
is no such thing as the ‘general public’.
Advertisers of consumer products have long understood that the more targeted
the message and media choice, the more likely they are to achieve their goals.
Hence the choice of some commercials (e.g. beer and sports utility vehicles) placed
during football games and others (e.g. financial services and cars) during news
programmes. While this may seem at first to be self-evident, the discipline of
staying ‘on message’ and the practice of pre-testing with an intended audience has
only been applied in the last few decades to everything from the promotion of
movies to political campaigns.
In Germany, the Local Action Group involved with the WPA anti-stigma pro-
gramme used focus groups, small group discussions conducted with a moderator.
Focus groups have been used extensively in consumer advertising for many years.
The goal is to more effectively gather qualitative research and explore how products
and messages might be refined.
Having said all of that, the question becomes: is the use of mass media (e.g. tele-
vision, radio, billboards) a cost-effective expenditure for social marketing efforts?
With the WPA anti-stigma programme, the results have varied from country to
country. In the case of Canada, where 60-s messages were broadcast on three radio
stations, the group was effective in creating Awareness but changes in Attitudes were
disappointing. (The cost of a 60-s spot in radio during drive time was a fraction of
the cost of a 30-s spot in television’s prime time – both in terms of production and
media placement.)
The radio spot featured the voice of Dr Ruth Dickson (chair of the programme
from September 1998 to December 1999) and one of three individuals living with
schizophrenia. In industry terms, the 60-s recording was a ‘doughnut’, a standard
opening and close to bookend the spot, and an open centre in which alternate
messages could be placed. This structure allowed the placement of alternate mes-
sages to reduce the cost of production, and also increased the recognition of the
overall series. Dr Dickson recorded an opening and closing message on stigma and
discrimination against those with schizophrenia, along with a phone number that
listeners could call for more information. At the centre of the ‘doughnut’ was one
of the three recorded first-person accounts of those living with schizophrenia.
The radio spots were played on three local stations, CKIK, CJAY and CKRY, for
2 weeks in the morning and afternoon as commuters were on their way to and
from work in the last 2 weeks of January and all of February 1999. These three
29 Conclusion
stations were chosen because their formats skewed to younger adult audiences
(which research showed was less stigmatizing and include teenagers who had seen
Partnership presentations in their high schools and young adults of an age more
likely to develop early symptoms of schizophrenia). The music formats of these
three stations also differed (e.g. CKIK featured ‘adult contemporary’ pop and rock
and CKRY is a country music station), allowing the group to reach more listeners.
Additional funding allowed the commercials to be run again later in the year
for Mental Health Awareness week. However, post-testing needed to be conducted
after the first placement in January/February for data to be collected and submitted
to the Steering Committee.
Anecdotally, for members of the Local Action Group, the results were ‘over-
whelmingly positive’. In the first 2 weeks, the radio spots generated dozens of
phone calls. Members reported colleagues in hospitals and in health agencies relat-
ing that they had heard the messages. Dr Ruth Dickson reported that a year after
the last spot had been aired patients or family members entering the clinic still
mentioned they had heard her on the radio.
Post-testing in March indicated that between a quarter and one-third of those
surveyed (28%) recalled hearing the messages. Extrapolated to the population
of Calgary, roughly a quarter of a million people heard, and remembered, the
messages.
And yet, research on attitudes showed no statistically significant shift in public
attitudes. It should be noted, however, that in addition to research being conducted
after only the initial flight of messages, as we saw earlier, during the course of the
Pilot Programme negative news coverage by journalists increased 44%.
In future chapters, we will deal with the use of mass media by Local Action
Groups in other countries.
Conclusion
The number of target audiences (and the groups within those categories) chosen in
Canada exceed those of nearly all other Local Action Groups involved in the WPA
global anti-stigma campaign. By engaging in more activities, this group was able
to learn lessons which would prove instructive to later efforts (e.g. the importance
of a member of a target audience within the Local Action Group).
The effort in junior and senior high schools achieved significant, measurable
change in knowledge and attitudes in both urban and rural settings. As of this
writing, presentations by the Partnership Programme continue in these schools,
as does the ‘Teens Talking 2 Teens Competition.’ (Artwork of the winning efforts
of students have been featured in a calendar distributed during Mental Health
Awareness Week.)
Significant, national change in policy was achieved when focus was placed on
emergency room admission procedures. While results with medical students and
general health professionals have been less dramatic, the existence of on-going
informational presentations within these influential groups is clearly a positive
outcome.
Among opinion leaders and change agents, efforts directed toward journal-
ists yielded more positive press coverage. Much work is still needed to eliminate
misconceptions and misunderstanding (such as the routine use of ‘schizophrenic’
for inconsistent behaviour from everything from sports teams to politicians)
perpetuated in newspaper headlines and on television.
Finally, in the use of mass media for broader reach in the city and outlying
areas, messages by the Local Action Group were heard – and recalled – by an
estimated quarter of a million people. While generating community awareness is
one way to build public support that will move politicians and other civic lead-
ers, more study will be required to see how these messages affect attitudes in the
long term.
All of these changes were achieved in the 2 years after Michelle Miserelli spoke
to the press. More continues to be done by individuals who were involved in the
Local Action Group as well as by Fay Herrick and her group with the Calgary
Schizophrenia Society.
Before all of the Canadian results were tabulated, two other initiatives of the
WPA’s global anti-stigma effort had begun. The next two chapters will examine the
efforts and results in Spain and Austria.
For more information on the Global Programme in Canada, please contact

• Julio Arboleda-Florez (Advisor)
Department of Psychiatry, Faculty of Medicine, Queen’s University
Kingston, Ontario, Canada K7L 3L6
Phone: (+1-613) 544 3400
Fax: (+1-613) 547 1501
E-mail: jearflo@aol.com
• Fay Herrick
Schizophrenia Society of Alberta, Calgary Chapter
#700-2310 2nd Street SW
Calgary, AB, Canada T2S 3C4
Phone: (+1-403) 264 5161
Fax: (+1-403) 269 1727
E-mail: ssacc_advocacy@telus.net
31 Bibliography – Canada
• Heather Stuart
Department of Community Health and Epidemiology,
Abramsky Hall, Queen’s University
Kingston, Ontario, Canada K7L 3N6
Phone: (+1-613) 533 2901
Fax: (+1-613) 533 6686
E-mail: hh11@post.queensu.ca
BIBLIOGRAPHY – CANADA
Arboleda-Florez, J. (1998). Mental illness and violence: an epidemiological appraisal of the

evidence. Canadian Journal of Psychiatry – Revue Canadienne de Psychiatrie, 43(10), 989–996.
Arboleda-Flórez, J. (2002). What causes stigma? World Psychiatry, 16(1), 1.
Arboleda-Florez, J. (2003a). Considerations on the stigma of mental illness. Canadian Journal of
Psychiatry – Revue Canadienne de Psychiatrie, 48(10), 645–650.
Arboleda-Florez, J. (2003b). Life is like an onion. Academic Psychiatry, 27(3), 223–224.
Arboleda-Florez, J., Holley, H. and Crisanti, A. (1998). Understanding causal paths between
mental illness and violence. Social Psychiatry & Psychiatric Epidemiology, 33(Suppl. 1): S38–46.
Holley, H. (1998). Quality of life measurement in mental health. Introduction and overview of
workshop findings. Canadian Journal of Community Mental Health, 3(Suppl.), 9-20, 9-21.
Rogers Everett M. (2003). Diffusion of Innovations, 5th edn. Free Press, New York, NY.
Stuart, H. and Arboleda-Florez, J. (2001a). A public health perspective on violent offenses among
persons with mental illness. Psychiatric Services, 52(5), 654–659.
Stuart, H. and Arboleda-Florez, J. (2001b). Community attitudes toward people with
schizophrenia. Canadian Journal of Psychiatry – Revue Canadienne de Psychiatrie, 46(3),
245–252.
Thompson, A.H., Stuart, H., Bland, R.C., Arboleda-Florez, J., Warner, R., Dickson, R.A.,
Sartorius, N., Lopez-Ibor, J.J., Stefanis, C.N., Wig, N.N. and WPA, World Psychiatric Asso-
ciation (2002). Attitudes about schizophrenia from the pilot site of the WPA worldwide
campaign against the stigma of schizophrenia. Social Psychiatry & Psychiatric Epidemiology,
37(10), 475–482.
Phase II
Spain 35
Austria 42
3
Spain
In 1997, a celebration was held in Madrid to mark the thirtieth anniversary of the
Clinica Juan Jose López-Ibor. The clinic’s founder, J.J. López-Ibor had achieved
considerable notoriety in the 1950s for a publication on human sexuality. A decade
earlier, he achieved a different kind of celebrity when he and other Spanish intellec-
tuals were placed under house arrest by Francisco Franco. In 1964, 3 years prior to
the opening of his clinic in Madrid, he was voted the third president of the World
Psychiatric Association (WPA).
That evening, his son Juan J. López-Ibor Aliño, addressed the gathering of
psychiatrists and dignitaries. Professor López-Ibor Aliño and several of his sib-
lings had followed their father into psychiatry and 2 years later, in 1999, he would
step into his father’s former position as president of the WPA.
Also speaking that evening was a representative from the Vatican in Rome,
Dr Joaquin Navarro-Valls. Statistics place the number of baptized Catholics in
Spain somewhere between 96% and 99% of the population. While the presence
of such a high-ranking member of the Catholic Church was one reason for the
attentiveness of the audience, another was the subject of the talk: social stigma
and the depersonalization of the individual as major impediments to treatment.
Navarro-Valls spoke to those assembled at the clinic of the need to see the face of
God in the faces of those living with mental illness.
That same year, the Local Action Group, assembled by Professor J.J. López-Ibor
Aliño conducted a comprehensive survey among the general public, and more
specifically, among patients, family members and mental health professionals. The
survey was conducted by a professional research firm and the findings caused the
group to take a very different approach to addressing stigma and discrimination
from the Canadian pilot test.
Research with the general public revealed that only 17% had heard or read some-
thing about schizophrenia in the previous 6 months. A surprising 83% reported
that they knew nothing about the illness. One-third of the remaining group said
they did not know the causes of schizophrenia and 44% said there was no cure.
35
36 Spain
While knowledge and awareness were low, so too was the public’s reported
stigma and discrimination. Eighty per cent of those surveyed, for example,
would be in favour of having a treatment centre for schizophrenia in their
neighbourhood.
Yet, those living with schizophrenia, their family members and health care work-
ers all reported high levels of stigma and discrimination. Forty-two per cent of the
families said that the individual could not marry; 52% said they could not have
children and nearly one-third (29%) said they could not have a relationship with a
member of the opposite sex.
In contrast, no psychiatrist questioned, denied the ability of those living with
schizophrenia to have a relationship with a member of the opposite sex. Only 2%
said they should not marry and 5%, that they should not have children.
When the individuals themselves were asked, 8% believed they could not
have a boyfriend or girlfriend. Ten per cent said they believed they could not
marry.
On the question of schooling and study, 95% of the psychiatrists responded that
those living with schizophrenia could study. Yet 33% of the people living with the
illness reported that they had a limited capacity. The rates were even higher for
family members: 69% believed the individual could not study.
Although a majority of those living with the illness believed they could recover,
78% of family members said this was not possible. Equally disturbing, 60% of
psychiatrists consider it unlikely a patient will improve. For this reason, those
living with the illness are treated as highly incapacitated, chronic patients needing
a great deal of assistance.
Given these statistics, it is not surprising to learn that the majority of people
with schizophrenia feel rejected because of the illness and reported feeling rejected
by their psychiatrist.
Psychiatrists in turn felt rejected by the families of those with the illness (52%)
because families see no improvement and do not accept the diagnosis. They also feel
rejection by the patients. Fully 30% of psychiatrists surveyed felt rejected by other
health care professionals because they ‘provide few solutions’ and that psychiatry
itself was ‘not very useful.’
A survey conducted by the Madrid Association of Friends and Families of those
with Schizophrenia confirmed the social impact of such fatalistic thinking: 62%
of those living with the illness engage in no type of productive activity. Eighty
per cent live with their families, but do not provide any financial support. While
family support appears to be higher than in many industrialized countries, the
illness disrupts the relationship with the family and others in the community in a
significant manner.
37 Working from the inside out
Working from the inside out
Based upon these findings, the Local Action Group in Madrid developed what it
called an ‘inside-out’ strategy for addressing the stigma of schizophrenia. That is,
they would begin the anti-stigma interventions working with those closest to the
illness. Given the disparity of knowledge and attitudes among patients, their family
members and psychiatrists, the group developed an educational program to address
the myths and misunderstandings of the illness, and the stigma that can arise from
this lack of knowledge. With each target audience, the circle would be expanded
outward to increase knowledge among other health professionals (including the
staffs of hospital emergency rooms, a focus of the Canadian intervention), then to
legal, labour and educational decision-makers.
The Madrid approach may be instructive for countries where, stigma and dis-
crimination in the general population is relatively low, compared to that reported
among members of the immediate family or health care professionals who are in
direct contact with the individual. The concern of the Local Action Group was that
with such little public knowledge about the illness, its course and outcome, a public
awareness campaign might actually increase stigma.
The Local Action Group was, however, able to receive funding for a public
relations (PR) initiative to disseminate information about schizophrenia, and the
advances in treatment to the scientific press and the news media. Before addressing
that effort, we should examine the coalition of both groups in the public and private
sectors who supported the program.
Before initiating any intervention, the planning group in Madrid secured sup-
port from the Ministry of Health and Human Services (Ministerio de Sanidad y
Consumo), the Ministry of Work and Social Policy (Ministerio de Trabajo y Asun-
tos Sociales) and the National Drug Policy Plan (Plan Nacional Sobre Drogas). In
addition the Federation of Patients and Family Member Associations (FEAFES),
the Association of Health Journalists (ANIS), and the pharmaceutical company,
Eli Lilly and Company, leant their support. After initial implementation in Greater
Madrid, the group would refine the programme based upon feedback and take it
nationally into all 14 autonomous regions of Spain.
One of the first actions taken with the funds raised was to translate Volumes I
and II of the programme materials into Spanish. Volume II would later be edited
and printed in book form, given the title: Qué es y cómo se trata la esquizofrenia
y cómo combater el stigma. This book would serve as the support text for the
educational programme for psychiatrists, individuals living with the illness and
family members. After an initial publication and distribution of 1000 free copies,
the book was offered for sale.
38 Spain
Interventions for individuals living with schizophrenia and their families
The Technical Secretariat of the Local Action Group worked in collaboration with
consumer and family organizations to develop informational presentations. In
Madrid, 78 psychiatrists participated in a programme entitled‘Schizophrenia With-
out Stigma’ during which individuals living with the illness and members of their
family were given a choice of 49 different informational presentations. Today, sev-
eral thousand Spaniards living with schizophrenia and their family members have
participated in educational programs akin to that programme.
In the 3 years, from 1999 to 2002, more than 178 psychiatrists participated in lec-
tures, conferences, and other media events with persons living with schizophrenia
and family members throughout all regions of Spain. The goal of these pre-
sentations was to develop a more open dialogue among all the parties in this
inner-most circle of influence with the illness. Psychiatrists have been better able
to share the latest information on schizophrenia and new treatment regimens,
while individuals living with schizophrenia and their families have been better
able to educate psychiatrists on the lived experience of schizophrenia and the var-
ious manifestations of stigma and discrimination they encounter, often during
treatment.
Health care institutions
Professor J.J. López-Ibor Aliño and the programme’s technical secretary coord-
inated presentations for the ‘Open the Doors’ anti-stigma programme in two state
and six regional institutions during 2000. Such presentations, detailing the stigma
and discrimination faced by those living with schizophrenia, were also given to
officials in the Health and Consumption Ministry (General Secretary of Sanitary
Cooperation) and in the Work and Social Affairs Ministry (General Secretary of
Social Affairs).
The group also made presentations on the local level to the Consejería de Sanidad
(Local Health Authorities) in Madrid, Castilla y León, Baleares and Comunidad
Valencia. In addition to the authorities who participated in the programme in
Andalusia and Santa Cruz de Tenerife, presentations were given in 14 other Spanish
cities: Barcelona, Badajoz, Burgos, Cádiz, Logroño, Lugo, Murcia, Oviedo, Palma
de mallorca, Pamplona, Segovia, Valencia, Valladolid and Zaragoza.
In follow-up research conducted in 14 of the 17 autonomous regions in Spain, the
Local Action Group found a decrease in the shame expressed by families regarding
a son, daughter or sibling’s schizophrenia. The ‘inside-out’ strategy appears to have
been effective in addressing the stigma and discrimination expressed in the closest
circles of influence.
39 An approach to the public
An approach to the public
Unlike the other pilot sites, Canada and Austria, the group in Spain decided to
work with a PR firm rather than an advertising or marketing agency. As discussed
earlier, one of the reasons for this is that given the low awareness and knowledge
of schizophrenia, its treatment and outcome, the group feared social marketing
might generate more questions and raise more fears than it answered or eased.
In the private sector, most companies and corporations with significant mar-
keting budgets pursue both advertising and PR. For non-profit organizations with
limited budgets working with either communications channel can be a financial
hardship. However, each has its relative advantages.
Advertising allows a group, the greatest control over message content and place-
ment. This control comes at a cost of both time and money insofar as placement
of a single 30-s television spot on prime time television in the United States costs
thousands, sometimes tens or hundreds of thousands, of dollars. But most coun-
tries have broadcast guidelines that mandate networks broadcast a certain number
of hours of public service advertising for free or discounted rates. (Even this option
can prove problematic if television stations relegate these commercials to late in
the evening when airtime is less expensive and less of a financial loss.) Depending
on the magazine, newspaper, or radio station, other advertising media can be far
less expensive and allow for longer messages.
PR firms have established relationships with members of the press. These firms
can be effective in pitching stories to editors or broadcasters. These stories can
range from brief interviews with professional psychiatrists in conjunction with a
new story or event (e.g. providing a balanced, medical perspective if an individual
with mental illness is involved in a crime) to entire news segments or informational
programs. Perhaps more important than any single story are relationships PR
firms can establish with reporters and editors who may be seeking intelligent (and
sometimes photogenic) sources for comment.
As with media purchases of advertising, PR access is more or less directly pro-
portional with a group’s financial investment. One other trade-off to consider is
that messages disseminated through PR channels gain editorial credibility by being
reviewed and published (or broadcast) by a reputable news organization. However,
the trade-off for this editorial credibility compared to advertising is some loss of
control and repeatability. The most brilliant interview can be bumped from the
evening news by a breaking story. Similarly, interviews may be fresh news today
when they are relevant to a local conference or event, but by week’s end it may be
old news.1
1 We should mention one other recent media development in this area which may be useful for some anti-
stigma programmes. Video News Releases (VNRs) have become packaged ways in which pre-scripted
40 Spain
Working with one of Spain’s leading PR firms, Llorente y Cuenca, the group was
able to place more than 184 journal and newspaper articles, during the first 3 years
of the programme. In 2003, roughly two dozen more articles appeared.
Broadcast media coverage, including interviews and news segments referring to
the stigma and discrimination because of schizophrenia totalled 1 h and 30 min of
television coverage and 2 h of radio time. The firm has estimated that an equivalent
amount of air time (purchased as advertising) would have cost 212,715,905 pesetas
(1,376,700 USD). Combining the reach of both the print and broadcast exposure,
the group calculates it reached an accumulated audience of 91 million, adding up
to multiple exposures in a country with a population of 34 million people over the
age of 15.
The anti-stigma programme itself,‘Open the Doors’, has been featured in medical
journals, and radio and television programmes. Working with Llorente y Cuenca,
the group has held press conferences in 13 cities across Spain.
The group also arranged media events during the release of the film A Beautiful
Mind. Like other groups in other countries, the Spanish Local Action Group sched-
uled meetings and symposia to coincide with the release of this award-winning
film, based on the life of Nobel Prize winner John Nash. Public events, such as
these afford an opportunity to encourage further discussion of issues and answer
questions raised in such films.
Results
The ‘inside-out’ strategy of working with those closest to the illness was effective
in reducing the shame reported by family members with a son, daughter or sib-
ling living with schizophrenia. On a national level, the Local Action Group was
especially effective in recruiting the support of psychiatrists nationwide to imple-
ment the educational programme – a data point other programmes may wish to
consider, whether the community of change agents be psychiatrists, journalists or
some other profession.
Results from the PR effort, however, revealed an interesting and challenging para-
dox. In research conducted in 14 of the 17 Spanish regions, knowledge and attitudes
about schizophrenia increased. In 2000, 26% of those surveyed said that an individ-
ual with schizophrenia could have a normal job. In 2001, that number rose to 48%.
However, when asked in 2000 if they would allow a day centre in their neigh-
bourhood, 81% said they would. In 2001, that number fell to 76%.
video footage can be provided to news outlets. Based on the same principle as a press release for the print
media, a VNR allows an organization to prepare its own news segment which might then be edited by a
television or radio station. With greater production control over the creation of the VNR, the group can
hone interviews and other footage as necessary, complete with a voice over narrator. For better or worse,
corporations and political groups have begun to use this communication channel more often to better
polish their messages.
41 Bibliography – Spain
The increase in reported social distance is cause for further investigation and for
consideration by other groups where knowledge about schizophrenia is low.
In March 2004, Professor López-Ibor and Dr Olga Cuenca met Fernando Lamata,
the new General Secretary of Health (Secretario General de Sanidad) to discuss
government involvement in fighting the stigma and discrimination because of
mental illness. In June 2004, initial planning was begun for a national programme
to address issues of stigma and discrimination.
For more information on the Global Programme in Spain, please contact

• Olga Cuenca (Coordinator)
J.A. Llorente and O. Cuenca
Hermanos Bécquer, 4-6a 28006 Madrid, Spain
Phone: (+34-91) 563 77 22
Fax: (+34-91) 563 24 66
E-mail: ocuenca@llorenteycuenca.com
• Juan J. López-Ibor Aliño (Advisor)
Clinica López-Ibor
C./Nueva Zelanda, 44, E-28035 Madrid, Spain
Phone: (+34-91) 373 73 61
Fax: (+34-91) 316 27 49
E-mail: jli@lopez-ibor.com
BIBLIOGRAPHY – SPAIN
Garcia, J. and Vazquez-Barquero, J. (1999). [Deinstitutionalization and psychiatric reform in

Spain.] [Spanish] Desinstitucionalizacion y reforma psiquiatrica en Espana. Actas Espanolas
de Psiquiatria, 27(5), 281–291.
Giron, M. and Gomez-Beneyto, M. (2004). Relationship between family attitudes and social
functioning in schizophrenia: a nine-month follow-up prospective study in Spain. Journal of
Nervous and Mental Disease, 192(6), 414–420.
Jacobsson, L. (2002). The roots of stigmatization. World Psychiatry, 16(1), 1.
López -Ibor Alino, J.J. (2001). [Fight against schizophrenia stigma.] [Spanish] La lucha contra el
estigma de la esquizofrenia. Anales de la Real Academia Nacional de Medicina, 118(2), 295–316;
discussion 317.
López-Ibor Jr, J.J. (2002). The power of stigma. World Psychiatry, 16(1), 1.
Montero, I., Asencio, A.P., Ruiz, I. and Hernandez, I. (1999). Family interventions in
schizophrenia: an analysis of non-adherence. Acta Psychiatrica Scandinavica, 100(2),
136–141.
Ochoa, S., Haro, J.M., Autonell, J., Pendas, A., Teba, F., Marquez, M. and NEDES Group. (2003).
Met and unmet needs of schizophrenia patients in a Spanish sample. Schizophrenia Bulletin,
29(2), 201–210.
4
Austria
In the midst of frenetic commercials selling soaps, jeans and politicians, the tele-
vision screen is held in seeming freeze frame: a close-up of a telephone answering
machine. An incoming call activates the tape recorder and we watch the wheels
spin. But for the duration of this spot, no voice speaks. The phone is not hung up.
The mysterious caller appears to be unable to say what he or she wanted to say. At
the machine switches off, the titles appear:
Schizophrenie hat viele Geschicte

Sprachlosigkeit ist eines davon
‘Schizophrenia has many faces – speechlessness is just one.’ This statement is

followed by a toll-free number, which the viewer can call for help or more
information.
This television spot, winner of a bronze award in the Austrian Commercial
Competition, was run on national television in September and October 2000.
At the same time, posters in buses and transit stations presented other ‘faces of
schizophrenia’.
Geography undoubtedly played a role in the Austrian Local Action Group’s
choice of television as a medium to communicate their message – as it did in
the choice for Austria to be the first of the three pilot site countries to start the
programme as a national effort. Austria is one-sixth the size of Spain. The province
of Alberta where the Canadian programme began in Calgary is larger than Spain
and Austria combined (661,848 km2 ). The greater metropolitan region of Madrid
is home to a population that is now more than half the total population of Austria.
In the country of 83,858 km2 , the Austrian Broadcast Corporation (ORF) reaches
more than 4.5 million people daily, roughly 55% of the population.
Professor Wolfgang Fleischhacker, who had served as chair of the Treatment
Committee of the World Psychiatric Association (WPA) anti-stigma programme,
worked with Dr Werner Schoeny and others to establish working groups in
Salzburg, Linz and Vienna. These three urban centres each included members
from three national organizations: Österreichisch Gesellschaft für Neurologie and
42
43 Targeting journalists
Psychologie, Österreichische Schizophreniegesellschaft and Pro Mente Sana. The

latter two were patient and family organizations. The involvement of both profes-
sionals and individuals living with schizophrenia became a hallmark of most WPA
efforts. In Austria, the central, organizing action group was composed of two indi-
viduals living with schizophrenia, one family member, four psychiatrists, two other
mental health professionals, a business leader and a public relations specialist.
Establishing a benchmark
Unlike Canada and Spain which conducted research and then defined target audi-
ences based upon that research, the group in Austria identified four target audiences
and then conducted knowledge and attitude surveys among these groups. The tar-
get audiences chosen were: public schools, general mental health assistance services,
psychiatric institutions and journalists.
Using the instrument developed in Canada, they interviewed roughly 2000 adults
with representative samples from each target audience. While each of the groups
expressed varying levels of stigma, journalists demonstrated significantly higher
levels of stigma to the illness.
While 80% of the doctors surveyed identified genetics as the main cause, 70% of
the general population listed stress as a probable cause and 60% thought that head
trauma could cause schizophrenia. A surprising 84% of the general public said they
were not interested in hearing more about schizophrenia, indicating a high social
distance.
Targeting journalists
Based upon the findings, the Austrian group developed an approach designed to
simultaneously use the media to disseminate information and change the know-
ledge and attitudes of print and broadcast journalists. Working with the Austrian
Society of Psychiatry and Psychotherapy, they approached the country’s largest
newspaper, Kronenzeitung. The newspaper agreed to run a weekly page covering
mental health issues.
In addition to this regular column, the group pursued an extensive public rela-
tions campaign with other newspapers, magazines and the broadcast media. From
1999 to 2002, articles appeared in Neue Zeit, Die Furche, Salzburger Nachrichten,
Tiroler Tagezeitung, Medical Tribune and Der Standard.
Overall, more than 100 articles and news reports appeared in both the print and
broadcast media. Articles also appeared in scientific and medical journals, such as
Neuropsychiatrie, Jatros Neurologie u. Psychiatrie, Medical Tribune and Ärtzwoche.
44 Austria
Brochures and press kits dispelling popular myths associated with schizophrenia
were distributed to the press. More than 75,000 folders, booklets and newsletters
have been distributed to the general public as well.
Educating high school students
Like the Canadian pilot programme, the Austrian group decided to target high
school students. In part they chose these teenagers because the first symptoms of
schizophrenia commonly occur during the mid- to late-teen years. However, the
group also wanted to address myths and misunderstandings early in the classroom
setting. In this way, they hoped to avoid the development and entrenchment of
stigma and discrimination.
Between 1999 and 2002, more than 130 presentations and educational work-
shops were conducted in high schools across the country. By developing a teaching
curriculum that could be used in health or science courses at the high school level,
the Austrian programme was able to establish regular, on-going presentations in
many schools across the country. In 2004, the group then initiated a Campaign for
Prevention and Reduction of Suicides – another urgent mental health crisis for this
age group in many countries.
As noted earlier, unlike other initiatives that may approach such programmes as
short-term ‘campaigns’, the WPA emphasizes long-term commitment of groups.
In this way, educational initiatives that are undertaken in order to fight the
stigma and discrimination because of schizophrenia can be both updated with
new information and broadened to include such topics as teenage suicide or drug
abuse.
Broadening the audience

The Austrian initiative chose to use mass media to reach a wider national audience.
Working with an advertising agency, the group created a 30-s television commercial
and a shorter 15-s version. Airtime was purchased and the spots were run 32 times
in September and October 2000. They were also shown in movie theatres.
The broadcast messages reached 46% of the total television viewing audience
(8.1 million viewers) in September and 59% (14.6 million viewers) in October.
To coincide with the broadcast of these messages and reinforce them, posters and
transit cards were placed on buses and other public transportation.
Four months later, 14% of those surveyed remembered seeing the television
spots. More than 500 calls were placed to the telephone number advertising more
information about schizophrenia and the anti-stigma effort itself.
45 Conclusion
Mental health services
As the pilot sites in both Canada and Spain found, individuals living with
schizophrenia often identify mental health professionals among the sources of
stigma and discrimination. The Canadian programme recommended guidelines
for dealing with acute cases in emergency rooms. The Spanish initiative fostered
greater communication of information between mental health professionals and
the consumer.
In several provinces in Austria, small discussion groups were established for
people working in the health and social services. After an initial informational
presentation – by psychiatrists and individuals living with the illness – the group
engaged in conversation about issues they faced concerning the stigma and dis-
crimination associated with schizophrenia. This participatory approach engaged
the attendees in something more than a didactic lecture of information and also
allowed them to voice their own frustrations or concerns.
In 2003–2004, the focus of these efforts with those involved in mental health
services was expanded to include vocational needs of those living with schizophre-
nia. Working with the Ministry of Labour, the group is hoping to support those
living with schizophrenia already in the workforce with regular intervention and
treatment.
Conclusion
While a follow-up national survey still needs to be undertaken to determine if the
stigma and discrimination because of schizophrenia have been lowered, numbers
do indicate that the message was received by millions of Austrians. The results
described above were also published in the scientific journal Neuropsychiatria. The
group continues its efforts, building on its earlier successes and currently looking
for ways to fight institutional discrimination through the legal system.
For more information on the Global Programme in Austria, please contact

• Wolfgang Fleischhacker (Advisor)
Department of Psychiatry, Innsbruck University Clinics
Anichstrasse 35, A-6020 Innsbruck, Austria
Phone: (+43-512) 504 3669
Fax: (+43-512) 504 5267
E-mail: wolfgang.fleischhacker@uibk.ac.at
46 Austria
• Fritz Schleicher
Pro Mente Upper Austria
Figulystrasse 32, A-4020 Linz, Austria
Phone: (+43-732) 65 13 55
E-mail: schleicherf@promenteooe.at
• Werner Schöny (Coordinator)
Österreischischer Nervenärzte und Psychiater
Wagner-Jauregg-Krankenhaus, A-4020 Linz, Austria
Phone: (+43-732) 65 61 03
Fax: (+43-732) 65 13 21
E-mail: werner.schoeny@gespag.at
BIBLIOGRAPHY – AUSTRIA
Angermeyer, M.C., Liebelt, P. and Matschinger, H. (2001). [Distress in parents of patients suffer-
ing from schizophrenia of affective disorders.] [German] Befindlichkeitsstorungen der Eltern
von Patienten mit schizophrenen oder affektiven Storungen. Psychotherapie, Psychosomatik,
Medizinische Psychologie, 51(6), 255–260.
Freidl, M., Lang, T. and Scherer, M. (2003). How psychiatric patients perceive the public’s
stereotype of mental illness. Social Psychiatry and Psychiatric Epidemiology, 38(5), 269–275.
Gutierrez-Lobos, K. and Holzinger, A. (2000). [Mentally ill and dangerous? Attitudes of female
journalists and medical students.] [German] Psychisch krank und gefahrlich? Einstellungen
von Journalistlnnen und Medizinstudentlnnen. Psychiatrische Praxis, 27(7), 336–339.
Holzinger, A., Angermeyer, M.C. and Matschinger, H. (1998). [What do you associate with the
word schizophrenia? A study of the social representation of schizophrenia.] [German] Was
fallt Ihnen zum Wort Schizophrenie ein? Eine Untersuchung zur sozialen Reprasentation der
Schizophrenie. Psychiatrische Praxis, 25(1), 9–13.
Merl, H. and Schöny, W. (1983). [The psychiatrist’s basic attitude in the treatment of acute
psychoses.] Die Grundhaltung des Psychiaters bei der Akutbehandlung von Psychosen. Wiener
Medizinische Wochenschrift, 133(12), 311–313.
Schöny, W. (1998). [Schizophrenia – an illness and its treatment reflected in public attitude.]
Schizophrenie – eine Erkrankung und ihre Behandlung im Bild der Offentlichkeit. Wiener
Medizinische Wochenschrift, 148(11–12), 284–288.
Phase III
Germany 49
Italy 62
Greece 70
United States 80
Poland 88
Japan 95
5
Germany
In 2002, the movie, A Beautiful Mind, John Nash won the Academy Award for the
Best Film and Ron Howard won for the Best Director. The movie followed the life
of mathematician John Nash from his days as an undergraduate at Princeton when
he first developed symptoms of schizophrenia to his Nobel speech in Stockholm.
When the film was released in Germany, another film was receiving a great deal
of attention though its international distribution would be far more limited. Das
Weiße Rauschen (The White Noise) is the story of a Lukas, a 21-year-old college
student who develops schizophrenia. The film won the Max Ophüls Newcomer
Prize at the Saarbrücken Film Festival. When word spread of the film at the Berlin
Film Festival, the single screening – put on for distributors and the press – was
standing room only. Exhibitors had to set up a second screening to accommodate
those who could not attend the first screening.
Despite the similar subjects of the films – two first-person perspectives on the
thoughts, delusions and hallucinations of a person living with schizophrenia –
the presentations were dramatically different. A Beautiful Mind ends with the
central character receiving the Nobel Prize, while Das Weiße Rauschen ends more
enigmatically with the protagonist standing alone a beach, listening to the roar of
the ocean.
How do such powerful depictions of the inner life of those living with schizophre-
nia alter public stigma and discrimination? Might the frightening and emotional
portrayals instill more fear and social distance? Or does a realistic presentation
of the experience (at least as realistic as the presentation of an interior experi-
ence can be) allow the viewers to better empathize with an individual living with
schizophrenia? As we will see later, these were just two of many questions that have
been investigated by the different regional groups who have participated in the
National Programme in Germany.
Like the Austrian programme, the effort in Germany was undertaken as a
national effort with multiple centres – but that’s where the similarities end. While
German geography (Germany being ten times as large as Austria) made this
49
50 Germany
national approach more challenging in terms of coordination among seven centres,

the differences were in many ways more notable than their similarities.
In 1999, the Federal Ministry of Education and Research founded the German
Research Network on Schizophrenia (GRNS). This network is one of 17 medical
networks created to integrate the work of leading research institutions and qualified
routine care facilities. Düsseldorf is the coordinating centre for GRNS. The network
includes multi-centre treatment studies, biological and genetic research projects
and general topics such as health care economy and training. High priority is
given to public education. Professor Dr Wolfgang Gaebel, in his multiple roles as
speaker of the GRNS, chairman of the Review Committee of the World Psychiatric
Association (WPA) programme and head of the coordinating centre of the German
‘Open the Doors’ projects, worked with the Steering Committee to develop a close
working relationship with the German Research Network.
For that reason, in addition to the awareness-raising efforts of the GRNS, the
network has actively promoted the ‘Open the Doors’ anti-stigma efforts through-
out Germany. Through the general public relation activities of the GRNS Head
Office, roughly 200 press reports have been released since the network was estab-
lished. Network members have been involved in nearly 40 radio and television
programmes.
A German ‘Open the Doors Society’ was founded in the year 2000. It involves
seven different centres in six different cities and a number of different on-site
directors. Professor Gaebel is chairman of the society. The centres include:
• Düsseldorf (Coordinating centre). Professor Dr Wolfgang Gaebel, Programme
Director; Anja Esther Baumann, MA, Programme Coordinator; H. Zäske,
Scientific Co-worker.
• Leipzig. Professor Dr Mathias Angermeyer, Programme Director; Dr Manuela
Richter-Werling, Journalist, Coordinator.
• Munich Ludwig-Maximillan University. Professor Dr Hans-Jürgen Möller,
Programme Director; Petra Decker, MA, Programme Coordinator.
• Munich Technical University. Dr Werner Kissling, Programme Director;
Dr Kerstin Wundsam, Programme Coordinator.
• Hamburg. Professor Dr Dieter Naber, Programme Director.
• Kiel. Professor Dr Aldenhoff, Programme Director.
• Itzehoe. Dr Arno Deister, Programme Director.
Given the number of different centres and the challenge of a national initiative,
the WPA enlisted the assistance of four advisors as well: Professor Dr Norman
Sartorius, Geneva; Professor Dr Wulf Rössler, Zurich; Professor Dr Heinz Häfner,
Mannheim; and the President of the German Society of Psychiatry, Psychotherapy
and Nervous Diseases.
51 Düsseldorf
Each Programme Director then assembled a Local Action Group consisting of:
individuals living with schizophrenia, relatives, journalists, health professionals,
politicians, opinion leaders and representatives from relevant target groups. Each
group operated independently, assessing needs in a particular community and
appropriate responses. All groups then reported their findings back to the coord-
inating centre in Düsseldorf. These research results are being collected and analysed
for presentation in 2005/2006.
For that reason, we will report the efforts of each centre separately. Although
some anecdotal results can be reported from individual interventions, the larger
report has yet to be written on the effects of this initiative nationwide.
Düsseldorf
In a coordinated effort with other centres of the German Research Network, the
centre in Düsseldorf conducted a survey of knowledge and attitudes in: Düssel-
dorf, Munich, Köln, Bonn, Berlin and Essen. Following this survey, the centres in
Düsseldorf and Munich conducted an anti-stigma intervention. The groups in Köln
and Bonn conducted an awareness programme on schizophrenia, its treatment and
outcomes. Berlin and Essen were the control sites.
A pair of other surveys were conducted. One of the general public, the second a
quality of life survey of those living with schizophrenia.
Using an instrument based upon the Perceived Stigma Questionnaire (Link,
1989) and the Alberta Pilot Site Questionnaire, each centre surveyed 1175 members
of the general public via telephone.
More than 80% of those sampled stated that more positive media reports, more
occasions for personal contact with mentally ill people and more public infor-
mation about mental illnesses would be useful possibilities to improve the public
acceptance of mentally ill patients. Eighty per cent of those surveyed thought that
patients suffering from schizophrenia suffer from a ‘split personality’. The post-
survey with the same interviewees has been conducted in summer 2004, the
assessment of the data is currently underway.
The second survey was a quality-of-life survey conducted with 109 inpatients at
the Department of Psychiatry and Psychotherapy. The survey was based upon: the
Stigma and Discrimination Survey (Wahl, 1999), Lancashire Quality of Life Profile
(Priebe and Kaiser, 1999), Global Assessment of Functioning Scale (Endicott, 1976).
People living with schizophrenia reported that most of the discriminating situ-
ations they faced were at the workplace. Colleagues or employers were rated as
supportive, but this group is also rated as the highest discrimination source.
The national group decided that results of both surveys demonstrated the need
for additional information and training activities. The Local Action Group decided
52 Germany
to concentrate efforts on reducing the social distance to people with schizophrenia.

Activities would be designed to both improve knowledge about schizophrenia and
contact with mentally ill people.
Interventions undertaken since 2000

The Local Action Group identified three target groups for interventions: the
general public, schoolchildren and journalists. Public awareness and education
programmes took a number of forms, including art exhibitions ‘Psyche and Art’
and ‘Ex neuron’. There were also public readings done by patients and actors called
‘Wenn die Seele überläuft’ (‘When the mind (or Soul) overflows’). A theatre event
called ‘4.48 Psychosis’ and a benefit concert called ‘Katja Riemann: Favourites’ also
increased the awareness of anti-stigma activities and the problem of stigma and
discrimination because of schizophrenia in Germany.
Specific educational lectures and seminars were held at grammar schools and
institutes for adult education. To address the target group of journalists, the Local
Action Group continues to hold workshops with journalists and work with the
media.
A joint research project was conducted by the World Health Organization
(WHO) teams in Nürnberg, Germany; and Skopje, Macedonia (working with
Drs Richter and Niklewski). The team conducted attitude surveys with the general
public in Macedonia and Germany. Results from these surveys were then compared
and analysed relative to differences in the health care systems in both countries.
Based on these results, the team developed intervention strategies for anti-stigma
work in Macedonia. These will focus on interventions with psychiatric hospital
staff workers and law enforcement officers.
The first ‘Anti-stigma Prize’ in Germany

In June 2003, at a countrywide journalism workshop in Düsseldorf, the Open the
Doors Society awarded the first Anti-stigma Prize. This has been instituted as an
annual award. In 2004, the prize of 6000 Euros was awarded in cooperation with
the German Society for Psychiatry, Psychotherapy and Nervous Diseases.
Anti-stigma Training Modules

Based upon the data collected from research and interventions to date, educational
modules are being developed and evaluated. These ‘Anti-stigma Training Modules’
have two components: methodological information about the development, and
implementation and evaluation of anti-stigma interventions with particular target
groups.
Informational material produced for the special needs of target groups (e.g. ‘On
Causes of Schizophrenia’ and ‘On Treatment of Schizophrenia’).
53 Hamburg
These modules will allow individuals and institutions to develop their own anti-
stigma interventions to target groups they specify (e.g. journalists, law enforcement
officers, schoolchildren psychiatric hospital ward staff and the general public). All
of these efforts would be conducted in cooperation with the national ‘Open the
Doors Society’.
Competence Centre for Destigmatization of People with Schizophrenia

A Competence Centre for the Destigmatization of People with Schizophrenia
(CCDPS) will be established under the umbrella of the GRNS in Düsseldorf.
This group will provide advice on the implementation and evaluation of mod-
ules for a modest fee. These services will include: ‘Train-the-Trainers’ seminars,
evaluation services, and continued updating and further development of the mod-
ules, thus contributing to the long-term support and maintenance of the GRNS
activities.
Hamburg
The Local Action Group in Hamburg chose high school teachers and students as
their target audience. In 1998, they founded the society ‘Irre Menschlich’ composed
of professionals and individuals living with schizophrenia. Their mission was to
coordinate education within schools.
In 2003, 20 schools with 35 classes (from 5th grade to 12th grade) were visited,
each by a team of one professional and one consumer (a patient or family mem-
ber). During the first year, the project concentrated on psychoses. In addition to
schizophrenia, bipolar disorders, eating disorders, cannabis abuse and borderline
disorder were also topics of increasing attention. At each of these educational ses-
sions, participants were given a media package with age specific materials about
mental illness, stigma and discrimination.
More specialized courses were also offered in cooperation with the Hamburg
Institute for Advanced Training of Schoolteachers.
In an effort to determine the kinds of messages being communicated to school
children regarding mental illness, the group conducted an analysis of German
books for children and young adults.
Since 1999, an ‘Open Door Day’ has been organized each year, again focussing
on information for schools and the general public. About 3000 pupils and 2500
adults are reached annually.
One pilot project concentrated on personnel managers of medium- and big-sized
companies in Hamburg, establishing contacts and inviting them to informational
events. This project received major attention; 50 companies are already involved.
The two most recent projects are the information of local journalists (of print media
54 Germany
and of television) and the support of a stage production written and directed by a
former psychiatric patient.
Itzehoe-Steinburg and Kiel
The Local Action Groups in Itzehoe and Kiel joined forces in their efforts to
involve community leaders in an existing consumer organization: ‘Verein zur
Förderung der Integration psychisch Kranker und Behinderter im Kreis Stein-
burg e.V.’ (Society to Support the Social Integration of Mentally Ill and Disabled
People in Steinburg County).
An informational campaign was undertaken in this rural region, enlisting area
residents in the support of mental health initiatives. In addition, booths were set
up at community meetings, discussing health topics and upcoming events showing
support and solidary for those with mental illness.
Leipzig
Like both Hamburg and Itzehoe-Steinburg and Kiel, the Leipzig group worked
closely with a consumer group. They founded the society ‘Irrsinnig Menschlich
e.V.’ which focuses on public relations in the field of mental health and psychiatry.
Its aim is to counteract stereotypes about schizophrenia and other mental illnesses
and prejudice towards those suffering from them, by informing people about men-
tal illness and treatment opportunities. It also facilitates greater communication
and contact between people with schizophrenia, family members, social scientists,
journalists and local politicians. During the course of this programme, they hired a
journalist to write press releases for the press as necessary (e.g. to describe activities
of the group itself or to correct misreporting by the media).
The projects and activities of the association were developed on the basis of the
results of a focus group study assessing the concrete stigmatization experiences of
people with schizophrenia and their families.
Focus groups
Focus groups have been used as a qualitative research tool for many years in
consumer marketing. Only recently has this technique been applied to the social
sciences. Focus groups have been used successfully in countries such as Germany,
Brazil and Japan despite cultural difference. Discussions involve 8–12 participants
and are guided by a facilitator. Participants discuss a limited number of issues in
order to identify a range of opinions and ideas for specific groups.
55 Leipzig
In the case of anti-stigma interventions, focus groups of those living with

schizophrenia or their family members enable Local Action Groups to better
understand the challenges of those who directly experience stigma and
discrimination.
More important perhaps than simply providing insights, focus groups also:
• empower people living with schizophrenia and family members by
acknowledging their expert role and soliciting their assistance in defining
effective interventions;
• help identify and recruit interested and qualified individuals for task
groups;
• involve members from all relevant groups in programme development and thus
help sustain ongoing support throughout the programme;
• help balance the interests of programme planners with the perceived needs of
the intended beneficiaries of the programme.
In the final analysis, focus groups produce a rich body of data expressed in
participants’ own words. In Leipzig, Dr Matthias Angermeyer and Beate Schulze
made significant progress in developing more finely honed methodological tools
for using focus groups and realizing the benefits listed above.
Interventions based upon Focus Group results: secondary school students

Students, ages 14 to 18, were invited to participate in a creative programme enti-
tled: ‘Crazy? So What!’ Students were placed in teams with individuals living with
schizophrenia to develop a creative project of the groups’ choosing – a photo exhi-
bition, a collection of texts or series of paintings. In 2002, 21 schools from Leipzig,
Halle and Borna participated in the programme.
Participants in the ‘Crazy? So what!’ project were given a social-distance ques-
tionnaire prior to and after the intervention. Control groups not taking part in
the project days are also questioned – to control for other possible influence on
attitudes towards schizophrenia during the same period.
In general, research from these programmes found:
• adults are more prejudiced than children and adolescents;
• students’ attitudes towards people with schizophrenia improved through the
course of the project;
• negative ideas about people with schizophrenia have been reduced during the
course of the programme; and
• there is more clarity about the meaning of the word ‘schizophrenia’ following
the course.
56 Germany
Adult education
The Leipzig group also developed an adult education course. The series of evening
courses and discussions on mental illness is taught jointly by mental health profes-
sionals, people suffering from a mental illness and family members in cooperation
with the Leipzig Adult Education Centre. Enrollment in these courses has steadily
increased since they were first started in 2002.
Media
Through ‘Irrsinnig Menschlich e.V.’, the Local Action Group has produced
anti-stigma messages in virtually every medium, for example, television reports
such as the report ‘I Am Schizophrenic, but Not Crazy,’ which was awarded the
‘Schizophrenie und Stigma’ prize for journalism in 2001.
One of the programmes that received a great deal of media attention is a TV
documentary film, The Boss is the Patient. The film focuses on one of the mem-
bers of the international anti-stigma movement, Dr Petr Nawka, who has been
instrumental in establishing the programme in Slovakia. The film was developed
in collaboration with the Slovakian anti-stigma initiative.
This same partnership between Leipzig and the Local Action Group in Slovakia
has been responsible for Media Cell Michalovce – Against the Images in the Head, a
film workshop in Michalovce. The workshop included people with schizophrenia
and media professionals from Slovakia and Germany, and was held in July and
August of 2002. Eight women and men, diagnosed with schizophrenia, from Slo-
vakia and Germany worked as a team with four media representatives. The media
project is a model for future workshops designed to mitigate social conflict between
those in the media and those who are often marginalized or excluded from the
media process. The film developed in this workshop has been shown to audiences
in Slovakia, Germany and other countries at international festivals and showings. A
companion book documents the workshop and the working relationship of people
living with schizophrenia and media professionals as part of Media Cell Michalovce.
Munich
Two anti-stigma efforts have been undertaken in Munich. The first is through the
Ludwig-Maximillian University (LMU). The second involves the Munich Tech-
nical University (TU). The LMU centre is part of the German Research Network
and both work in close partnership on anti-stigma events such as regional press
workshops.
The LMU group organizes events for the general public such as monthly lectures
and readings with well-known authors, art exhibitions, cinema shows that include
panel discussion and poster actions such as ‘Artists Against Stigma’. At many of
57 Munich
these activities surveys are conducted, measuring the knowledge and attitudes of
the relevant target groups.
Those involved in anti-stigma work at the TU are working in cooperation with
‘BASTA’ (Bavarian Anti-Stigma-Action). This effort focuses on:
1 educational work in schools;
2 education of law enforcement officials for dealing with the mentally ill in
stressful situations;
3 the development of art and cultural projects.
BASTA has also founded ‘SANE,’ an Internet-based, ‘stigma-busting’ network
designed to fight discriminating advertisements. SANE works with direct mail
campaigns to the originators of discriminating publications (e.g. advertisements,
TV series, movies and press reports).
The Impact of Cinema

Ron Howard’s film, A Beautiful Mind, can arguably be called a Hollywood
blockbuster. Although it contains no car chases or exploding spaceships, the film
earned $170,742,341 at the US box office alone. Based upon the life of Nobel
Prize winner, John F. Nash, the movie also won four Academy Awards.
In late 2001, Das Weiße Rauschen (The White Noise) by director Hans
Weingartner played at several German film festivals and won several awards. The
director, Hans Weingartner, shot the film to give the viewer some sense of the
experience of schizophrenia, with loud, layered sounds and voices, and jarring
camera work. When Lukas is at a point of experiencing an episode, the film
switches from colour to black-and-white. As one reviewer observed:
Then as you start to recognize the ‘symptoms’ you virtually feel as if you yourself
are experiencing the attack. It was very frightening. The middle-aged man sitting
next to me during the screening, for example, hunched over his head between
his knees every time an attack started.
In Frankfurt, the Düsseldorf Local Action Group used both films as part of an
anti-stigma intervention and investigated data on the effectiveness of two very
different styles of presentation. The group hosted two cinema shows and two
panel discussions with individuals living with schizophrenia, medical professionals,
and the director of Das Weiße Rauschen. Roughly one thousand people – ranging
in age from 13 to 98 years of age, with a median age of 31 – attended. Fifty-seven
per cent of those attending were female and 43% were male.
Roughly 149 of those in attendance responded to pre- and post-tests on
knowledge and attitudes. In their self-assessment, 98% reported that they felt
58 Germany
better informed about schizophrenia and 94% believed that they had a better
understanding about people living with schizophrenia. Roughly nine of ten
(91%) said they empathized more with the people with schizophrenia.
However, when asked questions about specific aspects of the illness and
individuals diagnosed with schizophrenia, the results were more complex.
Significantly more people reported that they would ‘be able to maintain a
friendship’ with someone with schizophrenia (74.8%, pre-test; 89.1%, post-test).
However, when asked about marrying someone with schizophrenia, 23%
responded they would not consider marrying someone with schizophrenia in the
pre-test; in the post-test 31.6% responded they would not.
Overall, when effects were compared between the two films, it was found that
both films heightened the awareness and increased the knowledge of the illness.
However, these films can also increase fear, negative attitudes and social distance.
Having an opportunity to discuss the movies with people living with the illness
helped further the understanding and reduce social distance.
When the two films were compared for their effectiveness in addressing stigma
and discrimination, A Beautiful Mind – with its upbeat Hollywood conclusion –
had a greater impact in reducing social distance.
Conclusion
Because many of the anti-stigma efforts described above are part of the German
Research Network (supported by the Federal Ministry of Education and Research),
national results of these efforts will be part of research presented in 2005/2006.
However, preliminary research has already pointed to the importance of four
elements.
The importance of focus groups in providing qualitative data (e.g. the specific
content of stigmatizing language and behaviour, as well as the subjective experience
of the stigmatized) that supplements quantitative data on knowledge and attitudes.
The potential for transnational/transcultural stigma work, such as the documen-
tary films developed between the groups in Leipzig, Germany and Michalovce, Slo-
vakia. This is being enhanced further by technological innovations such as the use
of the Internet and low-cost digital video production. In addition a joint research
project between Düsseldorf, Germany and Skopje, Macedonia is investigating
difference between health care systems between the countries.
As with the interventions in Canada, the Local Action Groups in most German
centres sought to balance carefully targeted interventions (such as those to high
school students or mental health professionals) with broader, more ‘public’
activities such as cinema presentations.
Of the 20 WPA programmes underway internationally, several of the German
Local Action Groups are notable for their close working relationship with consumer
59 Bibliography – Germany
organizations such as BASTA and Irrsinnig Menschlich. These groups are actively
involved in further empowering individuals living with schizophrenia socially and
politically.
For more information on the Global Programme in Germany, please contact

• Anja Baumann (Coordinator)
Department of Psychiatry, Heinrich-Heine-University Düsseldorf
Bergische Landstr. 2
40629 Düsseldorf, Germany
Phone: (+49-211) 922 2777
Fax: (+49-211) 922 2020
E-mail: baumanna@uni-duesseldorf.de
• Wolfgang Gaebel (Advisor)
Department of Psychiatry, Heinrich-Heine-University Düsseldorf
Bergische Landstr. 2
40629 Düsseldorf, Germany
Phone: (+49-211) 922 2000
Fax: (+49-211) 922 2020
E-mail: wolfgang.gaebel@uni-duesseldorf.de
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white noise’.] [German] Das Bild psychisch Kranker im Spielfilm: Auswirkungen auf Wissen,
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Praxis, 30(7), 372–378.
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initiative ‘Irre menschlich Hamburg e.V.’.] [German]. Antistigmakampagne von unten – an
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402–408.
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(2004). The relationship between public causal beliefs and social distance toward mentally ill
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665–670.
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61 Bibliography – Germany
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(2003). German research network on schizophrenia-bridging the gap between research and
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6
Italy
Speaking at an international conference about the World Psychiatric Association

(WPA) anti-stigma programme undertaken in Italy, Dr Giuseppe Rossi told the
following story: Dr Richard Warner, Chairman of the Programme’s Stigma Com-
mittee, had come to Brescia to consult with the Local Action Group. ‘We presented
Dr Warner with all the research we had done, all of the surveys we had conducted,
studies of high school students, of journalists. We showed him all of the tabulated
results, then asked him for his recommendations. He said: “I recommend you start
doing something besides research.” ’
The local programme coordinator, Dr Giuseppe Rossi, is a psychiatrist in a
hospital of the ‘Centro San Giovanni di Dio’ Fatebenefratelli. The Order of Saint
John of God is a network of 250 Catholic hospitals in 48 countries. The order was
founded in Grenada, Spain in the sixteenth century by John Cuidad. According to
legend, he was a bookseller who had become a patient in the psychiatric wing of
the city’s Royal Hospital. After his release from the hospital, a friend let him stay
on a small porch to escape the bitter cold winter. John Cuidad began taking in the
poor and infirm who had no shelter.
Those involved in the programme at the hospital, planned, if the anti-stigma
effort was successful, to extend the programme throughout the international organ-
ization and have it serve as a model for other hospitals in communities around the
world. When Professors Sartorius and Lopez-Ibor met with the Head of the Order
in Rome, he expressed considerable interest in the idea of expanding throughout
the community of hospitals.
The Local Action Group assembled by Dr Rossi included: two psychiatrists, a
psychologist, an official from the local health care system, a schoolteacher, a jour-
nalist, a local business owner, as well as a consumer and family member from Asso-
ciazione Italiana Tutela Saluta Mentale, a national association of family members.
As with programs described earlier, the initiative in Brescia was announced to the
media at a major press event. Eli Lilly and Company provided funding for the event
62
63 Stigma and high school students
and support for the ‘Reintegration Awards’, a programme launched to recognize

excellence in rehabilitation work, in collaboration with the Italian Association of
Psychiatry.
Research
The Brescia Local Action Group first surveyed 280 members of the general public
using several different instruments:
• Community Attitudes to the Mentally Ill (CAMI) Inventory
(Taylor and Dear, 1981).
• Fear And Behavioural Intentions (FABI) Inventory (Wolff et al., 1996a).
• Semi-structured Interview (Wolff et al., 1996b).
The group also conducted pre- and post-tests of the knowledge and attitudes of
high school students before and after presentations given by a psychiatrist and
psychologist. By the end of 2002, about 500 students had been surveyed.
A series of six focus group discussions were also organized – three with individ-
uals living with schizophrenia, three with family members – to better understand
the experience of stigma of mental illness by those directly affected by it. Forty
individuals participated in the research (described below). Working with Beate
Schulze from the Leipzig Local Action Group, the Brescia team compiled the data
using a computer program called WinMax.
On the basis of this data, the Local Action Group developed interventions and
messages for key target groups. In 1999, the group identified high school students,
people living with schizophrenia and family members for their initial work. Once
these efforts were successfully underway, in 2001, the programme selected two
public target groups – employers and journalists – for anti-stigma activities.
Stigma and high school students

One of the first anti-stigma interventions undertaken by the Brescia group involved
high school students. An experimental group of students from 16 to 18 years of age
was identified in the urban area of Brescia. A control group of 186 subjects was also
identified. These groups were selected at random from the last three school years of
six schools (one teachers’ training school, two lyceums, one technical school, one
school specializing in scientific studies and one specializing in classical studies).
The Local Action Group secured permission from the provincial education
office to conduct the research, before approaching the headmasters of the
selected secondary schools. The students’ knowledge and attitudes were measured
using a questionnaire based on the Canadian survey. Students were given these
64 Italy
questionnaires prior to the intervention and again 1 and 3 months after the 2½-h
educational programme.
Before starting work with the students, the psychiatrist and psychologist team
met with the teachers. In this initial 1-h presentation, teachers received information
on mental illness, the stigma associated with mental illness and the goal of both
the local education programme and the objectives of the WPA global anti-stigma
programme. Each teacher was given two brochures:
• The first was a general overview of the myths and misunderstandings regarding
mental illness and information designed to address negative stereotypes.
• The second was a more detailed and specific presentation of mental illnesses,
their causes and their treatment.
The presentations to students were 2½ h in length. In these presentations, a
consumer joined the psychiatrist and psychologist. Together the team presented
information on a wide range of topics including aetiology and treatment of psy-
chiatric disorders, as well as issues of stigma and discrimination. Students watched
a videotape on the WPA global anti-stigma programme and were given a brochure
on the local initiative in Brescia.
The control group of students did not participate in the intervention and did not
receive any information about mental illness or the stigma associated with it. Both
groups were then asked to complete survey instruments measuring knowledge and
attitudes.
The results showed significant changes in attitudes towards people suffering
from mental illness. Students in the experimental group were more willing to
accept someone with mental illness in their class after the intervention. This same
group of students also expressed less fear in speaking with someone suffering from
a mental illness. The intervention team speculates that this reduction in fear is
directly based on already having had a personal interaction with an individual with
mental illness.
Stigma and journalists
This particular target group has proven to be challenging for the Brescia team.
While the Calgary intervention had been able to achieve greater reach into the
community of journalists by including a member in their group, the journalist
on the Brescia Local Action Group was not able to establish a broader network of
colleagues. In 2003, the group approached other journalists to have them assist in
the intervention.
In 1998, focus groups with journalists were conducted to assess knowledge and
attitudes. The Local Action Group also sought a deeper understanding of the
65 Working with employers and their employees
origins of stereotypes and ways in which negative images are perpetuated in the
media. Based on the results of these focus groups, the Local Action Group created
a media kit and series of articles to better educate journalists about schizophrenia,
and the stigma and discrimination associated with it.
The group conducted a pre-intervention survey of one of the leading newspapers
Il Giornale di Brescia in 1998. Articles were evaluated as to the negative and positive
images portrayed regarding mental illness.
In 2002, a second evaluation, using the same criteria, was undertaken. In the
4 years during which the anti-stigma effort was undertaken, the number of articles
presenting positive messages of recovery and available treatment had increased.
While the group believes its efforts have had some impact on this change, it con-
tinues its analysis into the many different reasons the shift may have occurred in
the media.
Working with employers and their employees

The Local Action Group contacted 39 companies in the manufacturing sector of
the province of Brescia. Government legislation requires that companies hire indi-
viduals with handicaps. The group administered questionnaires to the employers
of each of these firms as well as 15 of their employees. In total 284 questionnaires
were completed by employees and 39 by employers. Given the size of the employer
sample it is difficult to show results with statistical significance.
However, the clearest trend, which was demonstrated with statistical significance,
was that those business owners who had been in business and hiring employees the
longest showed the most negative attitudes to the idea of employing individuals
with mental illness.
Among the employees, a direct correlation was shown between the age of the
employee and attitudes towards those with mental illness. Older workers had less
positive attitudes toward people with schizophrenia than the young. Attitudes
toward those with mental illness were more positive in companies where employees
worked with individuals with disabilities. Similarly, the research showed that those
who knew a colleague with mental illness were more likely to have positive attitudes.
After the first study exploring the attitudes of employers and employees toward
people suffering from psychiatric disabilities, the Local Action Group analysed
the previous 5 years of activities of NIL, a public agency providing supported
employment services for those with disabilities. One unit within that agency is
dedicated to employment issues for those with mental illness.
From 1998 to 2003, the unit tracked the employment of 70 people with serious
mental illness. The percentage of those who have been employed and maintain
their work is more than 30%. With that data, the Local Action Group has begun
66 Italy
to assess levels of satisfaction among those who have received support – and their
overall assessment of social integration. This study will be followed by an analysis
of the family members and relatives. The final phase will then be an analysis of the
employers themselves regarding the services provided by NIL.
The Brescia group will continue to use this data in its efforts to integrate those
with mental illness into the workforce.
Focus group findings in Brescia

Following her work on focus groups with the intervention in Leipzig, Germany,
the Brescia team asked Beate Schulze to assist them in a similar effort. Many of
the same techniques and measurement instruments were used.
Six focus groups were organized: three with individuals living with
schizophrenia and three with family members. Groups varied in size from six to
eight participants. A total of 26 individuals diagnosed with schizophrenia (ICD-10)
and 22 family members participated (eight mothers, four fathers, six sisters, three
brothers and one husband). Of the individuals living with the illness, 75% were
inpatients of the psychiatric rehabilitation residential care unit. The remaining
25% were outpatients of the same unit.
Overall, the experience of stigma and discrimination described by both groups
differed in significant areas.
Experiences of stigma during the course of psychiatric treatment accounted for
36.5% of all experiences reported by family members. These relatives cited
inadequacy of services and shortages of effective treatment, as well as an overall
lack of respect and collaboration from the health care professionals.
Those living with schizophrenia, by contrast, complained about mental health
services in only 7.5% of the examples of stigma and discrimination cited. They
reported negative attitudes and prejudice of the community in 28.8% of the
examples. Family members cited these examples in only 1.3% of the incidents.
One-fourth (24.8%) of the family members reported that stigma contributed to
their own negative self-image, while describing the impact of social stigma on
their own self-image in only 7.5% of the cases. However, nearly one-fifth of those
living with schizophrenia expressed a concern about the lack of understanding of
the illness by the general public (compared to 1.3% of relatives’ accounts).
In the area of health care services, another interesting disparity occurred. Both
individuals living with schizophrenia and their family members complained about
the lack of services available and the distance they were required to travel to
reach these services on the outskirts of town. However, relatives reported that
they were not consulted on the treatment regimen of the family members and
that doctors did not listen to them. They felt doctors did not appreciate their input
into the care of the patient living in their household.
67 Conclusion
For example, they report that the doctor’s recommendations are often at odds
with what they feel they can do or provide. They were given little guidance in how
to care for the individual and were told they simply ‘must tolerate’ the burden of
the illness.
Overall, the qualitative research found that those living with schizophrenia and
their family members consider stigma a major obstacle to reintegration into the
community. At the same time, they acknowledge that they themselves may
contribute to the process of stigmatization by accepting the public stereotypes
and anticipating rejection based on those stereotypes.
The study also highlighted the importance of health care professionals involving
both their patients and their family members in a dialogue of care to ensure
greater involvement and compliance. Both groups reported markedly negative
stigma and prejudice from medical professionals.
The results of these focus groups have been shared in two courses
presented for the Italian Association of Psychiatry and Psycho-social
Rehabilitation. Overall, this investigation demonstrated that focus groups
are effective in gathering important qualitative data on the experiences of
those living with mental illness to the medical professionals who are treating
them. Relieved of the defensive posturing that can occur in the doctor–patient
or doctor–family dyad, professionals may better understand the challenges
patients and their families face, and conversely, individuals living with
schizophrenia and family members may feel more empowered to become active
participants in the treatment.
Conclusion
The Local Action Group in Brescia continues its anti-stigma work. In addition, it
has expanded its educational efforts to other parts of Italy, assisting and consulting
with groups interested in implementing interventions of their own.
Unfortunately, the further expansion of the programme into other hospitals in
the international network of the Order of Saint John of God has not happened. This
is due in part to a reorientation of the hospital’s mission and greater investment
in laboratory and diagnostic apparatus, which has led to a reduction in the budget
set aside by the hospital for anti-stigma work.
In 2003, the group began working with the Catholic Church in Italy. Twenty
seminarians agreed to participate in a study of knowledge and attitudes among the
clergy. The intent, in a country where the population is nearly 99% Catholic, is
to add the clergy to the growing list of target audiences that include: high school
students, individuals living with schizophrenia and family members, journalists
and business owners.
68 Italy
For more information on the Global Programme in Italy, please contact

• Chiara Buizza
IRCCS ‘Centro San Giovanni Di Dio – Fatebenefrateli’
Via Pilastroni 4, 25125 Brescia, Italy
Phone: (+39-030) 3501 506
Fax: (+39-030) 3533 513
E-mail: wpa.irccs@oh-fbf.it
• Marco Ponteri
Phone: (+39-030) 3501 506
Fax: (+39-030) 3533 513
E-mail: mponteri@oh-fbf.it
• Giuseppe Rossi (Coordinator)
c/o Ist. S. Cuore di Gesù
Phone: (+39-030) 3501 571
Fax: (+39-030) 3533 513
E-mail: irccs.fatebenefrateli@oh-fbf.it
REFERENCES – ITALY
aylor, S.M. and Dear, M. (1981). Scaling community attitudes toward the mentally ill.
Schizophrenia Bulletin, 7(2), 225–240.
olff, G., Pathare, S., Craig, T. and Leff, J. (1996a). Community attitudes to mental illness. British
Journal of Psychiatry, 168(2), 183–190.
olff, G., Pathare, S., Craig, T. and Leff, J. (1996b). Community knowledge of mental illness and
reaction to mentally ill people. British Journal of Psychiatry, 168(2), 191–198.
BIBLIOGRAPHY – ITALY
Casacchia, M., Rossi, G. and Pioli, R. (2001). Schizofrenia e cittadinanza. Il Pensiero Scientifico
Editore.
Magli, E., Buizza, C. and Pioli, R. (2004). Malattia mentale e mass media: una indagine su un
quotidiano locale. Recenti Progressi in Medicina, 94(6).
Magliano, L., Fadden, G., Economou, M., Xavier, M., Held, T., Guarneri, M., Marasco, C.,
Tosini, P. and Maj, M. (1998). Social and clinical factors influencing the choice of coping
strategies in relatives of patients with schizophrenia: results of the BIOMED I study. Social
Psychiatry and Psychiatric Epidemiology, 33(9), 413–419.
69 Bibliography – Italy
Magliano, L., Guarneri, M., Fiorillo, A., Marasco, C., Malangone, C. and Maj, M. (2001a). A mul-
ticenter Italian study of patients’ relatives’ beliefs about schizophrenia. Psychiatric Services,
52(11), 1528–1530.
Magliano, L., Malangone, C., Guarneri, M., Marasco, C., Fiorillo, A. and Maj, M. (2001b).
[The condition of families of patients with schizophrenia in Italy: burden, social network and
professional support.] [Italian] La situazione delle famiglie dei pazienti con schizofrenia in
Italia: carico familiare, risposte dei SSM, sostegno sociale. Epidemiologia e Psichiatria Sociale,
10(2), 96–106.
Magliano, L., De Rosa, C., Guarneri, M., Cozzolino, P., Malangone, C., Marasco, C., Fiorillo, A.
and Maj, M. (2002a). [Causes and psychosocial consequences of schizophrenia: opinions of
mental health personnel.] [Italian]. Cause e conseguenze psicosociali della schizofrenia: le
opinioni degli operatori dei SSM. Epidemiologia e Psichiatria Sociale, 11(1), 35–44.
Magliano, L., Marasco, C., Fiorillo, A., Malangone, C., Guarneri, M. and Maj, M. (2002b).
Working Group of the Italian National Study on Families of Persons with Schizophrenia. The
impact of professional and social network support on the burden of families of patients with
schizophrenia in Italy. Acta Psychiatrica Scandinavica, 106(4), 291–298.
Magliano, L., De Rosa, C., Fiorillo, A., Malangone, C., Guarneri, M., Marasco, C. and
Maj, M. (2003). [Psychosocial causes and consequences of schizophrenia: opinions of Italians.]
[Italian.] Cause e conseguenze psicosociali della schizofrenia: le opinioni degli Italiani.
Epidemiologia e Psichiatria Sociale, 12(3), 187–197.
Magliano, L., De Rosa, C., Fiorillo, A., Malangone, C. and Maj, M. (2004a). National Men-
tal Health Project Working Group. Perception of patients’ unpredictability and beliefs on
the causes and consequences of schizophrenia – a community survey. Social Psychiatry and
Psychiatric Epidemiology, 39(5), 410–416.
Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C. and Maj, M. (2004b). Beliefs about
schizophrenia in Italy: a comparative nationwide survey of the general public, mental health
professionals, and patients’ relatives. Canadian Journal of Psychiatry – Revue Canadienne de
Psychiatrie, 49(5), 322–330.
Mangili, E., Ponteri, M., Buizza, C. and Rossi, G. (2004). Atteggiamenti nei confronti delle dis-
abilità e della malattia mentale nei luoghi di lavoro: una rassegna. Epidemiologia e Psichiatria
Sociale, 13(1), 29–46.
Rossi, A., Amaddeo, F., Bisoffi, G., Ruggeri, M., Thornicroft, G. and Tansella, M. (2002). Drop-
ping out of care: inappropriate terminations of contact with community-based psychiatric
services. British Journal of Psychiatry, 181, 331–338.
Vezzoli, R., Archiati, L., Buizza, C., Pasqualetti, P., Rossi, G. and Pioli, R. (2001). Attitude towards
psychiatric patients: a pilot study in a northern Italian town. European Psychiatry: The Journal
of the Association of European Psychiatrists, 16(8), 451–458.
Warner, R., de Girolamo, G., Belelli, G., Bologna, C., Fioritti, A. and Rosini, G. (1998). The quality
of life of people with schizophrenia in Boulder, Colorado, and Bologna, Italy. Schizophrenia
Bulletin, 24(4), 559–568.
7
Greece
On 7 September 1999, an earthquake measuring 5.9 on the Richter scale struck

the Greek capital of Athens. More than 143 people were killed and hundreds more
injured. More than 40 buildings in the metropolitan area collapsed. The State
Psychiatric Hospital was severely damaged and residents of the hospital had to be
moved to other temporary housing. A number of patients were placed in nearby
hotels.
While the relocation was not done in secrecy, when some local residents heard
news reporting about a violent incident at one of the hotels, neighbours began to
speak out in opposition to housing patients in the hotels. They brought the case to
court in order to evict patients from the neighbourhood. The judge ruled against
the protesting residents and in favour of those temporarily housed in the hotels.
Initial anti-stigma work was already underway in Greece, but the public contro-
versy provided an opportunity to study issues involving stigma and discrimination.
A face-to-face survey was conducted with 200 residents, employers and employees
in three areas of Athens:
• Metaxourgio, where patients were relocated;
• Koliatsou where, 8 years earlier, mental health services had successfully been
integrated into the community;
• Liossio, an area that shared the same socio-demographic profile of the two other
centres, but lacked psychiatric services or a group home in the community.
The study showed that individuals who had more contact with the mentally ill had
more positive attitudes towards them as well. A second survey was conducted on
a national level of 1119 respondents over the age of 15. This face-to-face survey
explored the attitudes, knowledge and beliefs of the general public.
The majority of those surveyed (81.3%) said that those diagnosed with
schizophrenia have a split personality. Nearly three out of four respondents (74.6%)
said that those living with schizophrenia were dangerous. Overall, the general pub-
lic showed a low level of knowledge and a high level of social distance. High social
distance was reported among those of lower socio-economic status, living in rural
70
71 A unique national opportunity
areas, with little education, little knowledge of schizophrenia and no reported per-
sonal contact with individuals with schizophrenia. While 51.2% of respondents
were in favour of small group homes in the community, 19.9% were opposed –
and slightly more than half (56.6%) said they would actively resist them being
established.
The majority of all respondents said that television was their main source of
information about schizophrenia. Media portrayals of those with schizophrenia
were reported to be generally negative.
Compared to similar surveys on social distance done in Germany and Canada,
social distance in Greece was considerably high.
Based on the results of these surveys, the Local Action Group decided on a
two-pronged approach:
(a) to address issues of stigma broadly, through the media;
(b) to develop more focused interventions with specially tailored programmes that
would promote personal contact with individuals living with schizophrenia.
The Local Action Group selected a number of target audiences, similar to those
chosen in other countries: high school students and teachers, individuals living
with schizophrenia and family members, and mental health professionals.
A unique national opportunity

A second event would significantly affect the reach and effectiveness of the pro-
gramme. In 2002, Professor Costas Stefanis, a member of the global programme
Steering Committee, was named Minister of Health in Greece.
In addition to his participation in the anti-stigma effort, the Greek Local Action
Group included individuals from the Division of Mental Health, the Institute for
Paedagogics, the Family Association for Mental Health, Consumer Associations,
journalists and the media, as well as lobbyists and business professionals. These
individuals formed a number of different committees:
• The honorary committee includes an archbishop, politicians, journalists, acad-
emicians, artists and individuals ‘with key roles in the community to facilitate
networking for the overall programme’.
• The research committee includes professionals who would make recommenda-
tions on research needs and would be responsible for implementing the survey
on knowledge, beliefs and attitudes.
• The communication committee includes individuals charged with building
an effective communication plan, targeting social groups, and developing
innovative social marketing and public relations techniques.
• The education committee oversees the preparation of informational materials.
72 Greece
• The intervention committee supervises and coordinates direct contacts with state
and municipal authorities.
• The review committee is charged with monitoring and evaluating the overall
efforts of the group, and reporting to the core Local Action Group.
The Local Action Group selected a number of target audiences similar to those
chosen by other initiatives already described: mental health professionals, individ-
uals living with schizophrenia and family members, as well as high school students
and teachers. Given the national scope of the programme, the group also sought
to communicate its message broadly to the general public.
Once the first three volumes of World Psychiatric Association (WPA) Pro-
gramme materials were translated, the initial planning was completed and
interventions were undertaken with each of these groups.
Mental health professionals
From its earliest work in 1999, the Local Action Group has maintained a training
initiative for those in the mental health profession. The first of these involved 180
nurses, social workers, occupational therapists and others working in residential
settings.
This programme placed an emphasis on facts concerning schizophrenia, its
aetiology and treatment. Based on pre- and post-test assessments of knowledge
and attitudes, this approach has proven successful in dispelling misunderstandings
that surround the illness.
Making stigma a European priority

During its presidency of the European Union, the presiding country can select a
topic that it considers particularly important and present it for the consideration to
the ministers of the European Union countries. Through the auspices of Professor
Costas Stefanis, Greece selected the problem of stigma as the topic for a
Ministerial Conference held in Athens in March 2003.
The result was the inclusion of the work against stigma among the topics the
European Union and its ministers should address. The Ministerial Conference on
mental health, in Helsinki in January 2005 included stigma as one of the priorities
for health programmes across Europe.
Working with the media
Given the influence of journalists in presenting stories of mental illness to the

general public, the Local Action Group has placed strong emphasis on correcting
73 Expanding the volunteer network
commonly held misconceptions and educating opinion leaders. A press conference

was held at the start of the programme to present results of the surveys of knowledge
and attitudes.
Since June 2001, the Local Action Group has collected press clippings of stories
in the print media that refer to mental illness. These stories are coded and filed
so that attitudes and stereotypes might be tracked. In one 20-week analysis, two
mental health experts have categorized articles in five areas: general references,
mental health services, schizophrenia, mood and anxiety disorders. They found
that of the 204 articles collected in that time period, 10.3% of articles, and 22.2%
of those concerning schizophrenia, were stigmatizing.
Negative stereotypes and stigmatizing language appear in a wide range of popular
media – from news programmes to television sit-coms. The Local Action Group
in Greece established a ‘Stigma Watch’ Programme. One hundred volunteers were
then trained to monitor a variety of media sources, for example, of stigmatizing
imagery and language regarding mental illness.
Volunteers contact journalists, editors, publishers, producers and broadcasters
explaining how a particular article or programme was stigmatizing and reinforced
negative stereotypes and prejudice. Key to this effort is providing the journal-
ists and editors with accurate information and advising on how the damage
might be corrected. To date most of the communication has been through letter
writing.
One example is the response to the publishing of a book with the original French
title of ‘Le Dingue au Bistouri’ or ‘The Lunatic with a Lancet’. The Greek translation
made the stigma a little more specific with ‘The Schizo with the Lancet’. The group
contacted the publisher and is seeking to have the book given a less stigmatizing
title in its second edition.
Expanding the volunteer network

Volunteerism in Greece is, according to members of the Local Action Group,
‘not particularly widespread, especially when it comes to the mental health field’.
However, in addition to building the volunteer Stigma Watch Group, media
coverage of the programme has generated an increase in the number of volun-
teers. Most of these volunteers have been unemployed psychologists who work
with the Associations of Patients and Families and also staff the phone line
service.
The phone line service has been extremely important given the distribution
nationwide of so many pamphlets and information flyers. Established in September
2002, the service is available for those seeking information on schizophrenia, on
the anti-stigma programme or any other mental-health-related issues.
74 Greece
Records were kept of the requests for information so that the group might better
assess the most urgent needs. Requests identified needs chiefly in three areas:
1 About mental illness in general, the service available and issues surrounding
welfare, finances, legislation and consumers’ rights.
2 Improvement in existing services.
3 Empowerment and support for individuals living with schizophrenia and family
members.
Stigma and the arts
Initial research with the Canadian Pilot Programme raised questions about the
effectiveness of broad interventions to the ‘general public’. Yet the experiences with
other programmes such as the effort in Greece may indicate a need to reassess how
we measure the impact of an anti-stigma campaign.
In Calgary, the post-test measure of attitudes undertaken 10 weeks after a radio
campaign showed results that were inconclusive at best. However, in Greece, the
initiative to the general public was clearly effective in helping to create a network
of volunteers to assist in the anti-stigma efforts.
Similarly, a series of public events, involving the arts earned the programme
a good deal of press, addressed the myths and misunderstandings surrounding
mental illness in general and schizophrenia in particular. Like the programmes
in Spain and Germany, the Greek Local Action Group organized a special event
to coincide with the release of the film A Beautiful Mind in July 2002. Prominent
political, social and intellectual figures attended a special screening of the film at
a large cinema in Athens. The event was covered by the press. Stories from that
coverage appeared on television, the radio and in the print media for the next
several weeks.
The following March, another event was organized around the first staging in
Greece of the play Proof. The play, which won a Pulitzer Prize in the US, has played
internationally in New York, London and Paris. The drama concerns a young
woman whose father, a professor of mathematics, suffered from an unspecified
mental illness. During the course of the play, she seeks ‘proof ’ of her own math-
ematical genius, the possibility of her own mental illness and her affections for a
young grad student.
Actors, journalists and politicians were invited to a special performance of the
play. A lively conversation, involving members of the audience, followed the per-
formance. Actors, people living with schizophrenia and other attendees spoke in
dramatic and sometimes emotional terms about schizophrenia and the stigma
associated with it.
75 Support materials for communication
Later in 2003, two other major events were held. The first, a benefit concert, is
described below. The second was a 4-day film festival on mental illness and stigma,
part of the popular Thessaloniki Film Festival in November. Two halls were used
for film screenings and a series of related cultural events. One criterion for the
selection of the films was that each should deal in some way with the stigma and
discrimination experienced by those with mental illness. Another was that it must
address one of the commonly held myths regarding mental illness. The films were
presented with discussions that included psychiatrists, film critics, directors, actors,
as well as consumers of mental health services and family members.
The films selected fell into three categories:
1 Those dealing with stereotypes of violence (Repulsion; Fight Club and Through
a Glass, Darkly).
2 The stigma experience in the family (Shine; I am Sam and Frances).
3 Issues of rehabilitation and social integration (Girl, Interrupted; Elling and
Angel Baby).
The festival was intended as more than public education on mental illnesses, but
as an investigation into the realities of mental illness, its treatment, the challenges
of recovery, and the stigma and discrimination experienced by individuals.
Support materials for communication

The release of the film A Beautiful Mind provided an opportunity to further facili-
tate public dialogue on schizophrenia and the stigma associated with it. The Local
Action Group prepared a six-page informational pamphlet using images from
the movie. The pamphlet provided an overview of key facts about the illness, its
associated stigma and the varieties of social discrimination.
More than 1,500,000 pamphlets were distributed in cooperation with the 10
largest newspapers in the country. Another 600,000 were distributed by volun-
teers at cinemas, theatres and videoclubs in Athens. An additional 1,700,000 were
mailed out in the region of Attica, accompanying mailings from the national Water
Company. Mental health services throughout Greece received more than 50,000 for
distribution to individuals living with schizophrenia, families and friends. Another
30,000 have been distributed at conferences, workshops, academic institutions and
non-governmental organizations (NGO).
In a country with a population of 10,000,000, more than 3.3 million pamphlets
have been distributed. They have also been translated into Turkish, Albanian,
Arabic and Kurdish to reach immigrant communities living and working in
Greece.
76 Greece
Celebrity and stigma

If there is a cultural antithesis to the concept of stigma, it is celebrity. While stigma
and discrimination can keep individuals from having a voice in society through
homelessness, unemployment and other disenfranchisements, celebrity enables
an individual to be heard by a wider audience, and perhaps provide a voice for
those who are not allowed to speak, or who speak and are not heard.
In September 2003, the Local Action Group organized a concert at the
Herodium Theatre in the shadows of the great Acropolis of Athens. Nana
Mouskouri, an internationally renowned vocalist and supporter of the anti-stigma
movement, was the featured performer. To show the international nature of the
WPA anti-stigma movement, the evening’s performance also featured John
McDermott, a Canadian tenor with roots in Ireland and Scotland.
The high-profile event attracted well-known figures from politics, the cultural
community and the psychiatric profession. Four awards were presented that
evening: one to Nana Mouskouri, to the President of the Families Association for
Mental Health, to the President of the Association of Patients, and the main
sponsor of the international WPA Programme, Eli Lilly and Company.
Along with the usual information on the performers, sponsors and evening’s
selections of music, the playbill contained information about mental illness and
the stigma associated with it, as well as an overview of the Stigma Watch
Programme. Press coverage of the event was featured on television, the radio and
in newspapers and magazines.
Moving forward, the WPA is working to enlist the support of other international
celebrities to help spread the message of inclusion.
Stigma and high school students
In 2003, a nationwide educational initiative was undertaken in collaboration with

the Greek Ministry of Education. The aim of this effort is to instil tolerance of
diversity and respect for human rights for those living with mental illness. Stigma
and the discrimination associated with it will be one of the core components of the
curriculum.
Individuals living with schizophrenia and families
The Local Action Group established six psychoeducational programmes for rela-
tives and four programmes for individuals living with schizophrenia. The train-
ing package included: videotapes, brochures and informational booklets about
schizophrenia. As these programmes have been established, they can be easily
replicated and extended further out into the community.
77 Conclusion
The work was done in collaboration with Associations of Patients and Families
and included the creation of a seminar on the stigma associated with schizophrenia.
A special family support group for those with relatives living with schizophrenia
was also established.
Local networking and awareness
At the start of this chapter, we described the research undertaken following the
Athens earthquake. Research indicated that those who had had contact with indi-
viduals with mental illness were likely to be more tolerant and have a greater
positive attitude. In light of those findings, the Greek Local Action Group set up a
programme designed to improve attitudes towards those living with mental illness.
The Local Action Group works in partnership with consumer and family organ-
izations to organize presentations about schizophrenia in the community. The
presentations are conducted with the support of the three main psychiatric hos-
pitals of Athens and take place in neighbourhoods where group homes for those
with mental illness already exist or are scheduled to be opened in the future. The
goal is to establish a social support network within the community and creates a
neighbourhood branch of the consumer–family associations.
Conclusion
To date, Greece is the only Local Action Group in the global programme to have one
of its key participants elevated to Minister of Health of the country. Undoubtedly,
the active involvement of such a major political figure did much to advance the
anti-stigma effort in the country.
Having that opportunity, however, is not the same thing as effectively acting upon
it and certainly every Local Action Group through the careful selection of its initial
members has its own unique opportunities. As noted with other programmes, it is
important to include members of your target audience in the Local Action Group.
Other learning points from the Greek experience include:
• The building of a volunteer network to expand the reach of the programme,
provide support for events in the community and assist in efforts such as the
‘Stigma Watch’.
• The involvement of high-profile members of the community and celebrities to
draw media attention to the effort.
• Recognizing that television was the primary medium through which people
said they received information on schizophrenia, the Greek Local Action Group
created public events to attract those community leaders and celebrities, and
achieve a great deal of press coverage.
78 Greece
• Working in partnership with other groups is also important to the effective distri-
bution of information and communication materials. Working with the Ministry
of Education the group was able to establish a curriculum for high school
students. Working with the utilities industry, the group effectively distributed
hundreds of thousands of flyers to virtually every household in Greece.
The effort in Greece is an example of a programme that has been able to build
national profile and maintain momentum. The programme continues on a national
level as of this writing though there is a new Minister of Health.
For more information on the Global Programme in Greece, please contact

• Christina Aramandani
University Mental Health Research Institute (UMHRI)
Papagou, P.O. Box 66517
156-01, Athens, Greece
Phone: (0030-210) 6170822
Fax: (0030-210) 6519796
E-mail: stigma@compulink.gr
• Marina Economou (Coordinator)
University Mental Health Research Institute (UMHRI)
Papagou, P.O. Box 66517
156-01, Athens, Greece
Phone: (0030-210) 6170823
Fax: (0030-210) 6519796
E-mail: stigma@compulink.gr
• Costas Stefanis (Advisor)
University Mental Health Research Institute (UMHRI), Eginition Hospital
Athens University Medical School
73–74, Vasilissis Sophias Avenue
11528, Athens, Greece
Phone: (0030-210) 7217763/6422025
Fax: (0030-210) 7243905/7239805
E-mail: iumhri@compulink.gr
BIBLIOGRAPHY – GREECE
Daskalopoulou, E.G., Dikeos, D.G., Papadimitriou, G.N., Souery, D., Blairy, S., Massat, I.,
Mendlewicz, J. and Stefanis, C.N. (2002). Self-esteem, social adjustment and suicidality in
affective disorders. European Psychiatry: The Journal of the Association of European Psychiatrists,
17(5), 265–271.
79 Bibliography – Greece
Madianos, M.G. and Economou, M. (1999). The impact of a Community Mental Health Center
on psychiatric hospitalizations in two Athens areas. Community Mental Health Journal, 35(4),
313–323.
Madianos, M.G., Madianou, D., Vlachonikolis, J. and Stefanis, C.N. (1987). Attitudes towards
mental illness in the Athens area: implications for community mental health intervention.
Acta Psychiatrica Scandinavica, 75(2), 158–165.
Madianos, M.G., Economou, M. and Stefanis, C.N. (1998). Long-term outcome of psychi-
atric disorders in the community: a 13-year follow-up study in a nonclinical population.
Comprehensive Psychiatry, 39(2), 47–56.
Madianos, M.G., Economou, M., Hatjiandreou, M., Papageorgiou, A. and Rogakou, E. (1999).
Changes in public attitudes towards mental illness in the Athens area (1979/1980–1994). Acta
Magliano, L., Fadden, G., Economou, M., Xavier, M., Held, T., Guarneri, M., Marasco, C.,
Tosini, P. and Maj, M. (1998). Social and clinical factors influencing the choice of coping
strategies in relatives of patients with schizophrenia: results of the BIOMED I study. Social
Psychiatry and Psychiatric Epidemiology, 33(9), 413–419.
Magliano, L., Fadden, G., Economou, M., Held, T., Xavier, M., Guarneri, M., Malangone,
C., Marasco, C. and Maj, M. (2000). Family burden and coping strategies in schizophrenia:
1-year follow-up data from the BIOMED I study. Social Psychiatry and Psychiatric Epidemiol-
ogy, 35(3), 109–115.
Tomaras, V., Mavreas, V., Economou, M., Ioannovich, E., Karydi, V. and Stefanis, C. (2000).
The effect of family intervention on chronic schizophrenics under individual psychosocial
treatment: a 3-year study. Social Psychiatry and Psychiatric Epidemiology, 35(11), 487–489.
8
United States
In 1999, the US Bureau of Justice Statistics estimated that 283,000 jail and prison
inmates suffered from a serious mental illness. One in four female inmates is
reported to have a mental illness. Nearly half of the mentally ill inmates had
been imprisoned for a non-violent crime. Twenty per cent of those with mental
illness (male and female) had been homeless during the year before their incar-
ceration, according to a study by the Center for Mental Health Services. In 2003,
Human Rights Watch reported: ‘all-too-often seriously ill prisoners receive little
or no meaningful treatment. They are neglected, accused of malingering, treated
as disciplinary problems’.
Two other statistics further underscore the challenges for the mentally ill in the
US. First, only 60% of the mentally ill in state and federal prisons reported receiving
mental health treatment since incarceration. Second, the US remains one of the few
countries in the world that executes the mentally ill if they commit a capital crime.
One explanation often given for such shocking statistics is that: in 1955, 560,000
men and women were in US State Psychiatric Hospitals; in 2004, there were fewer
than 40,000. While the doors of institutions have been thrown open, public mental
health services have been grossly inadequate to address the needs of the mentally ill.
The Local Action Group working in Boulder, Colorado sought to disrupt the
vicious cycle that sweeps many of the mentally ill into the justice and penal systems
where their illnesses continue to go untreated, and they emerge with a double
stigma.
Boulder is 25 miles northwest of Denver, Colorado. Located in the Rocky Moun-

tains, the city has a population of roughly 100,000 people, is home to the University
of Colorado, and boasts ‘more used bookstores per capita than any other City in
the US’.
Professor Richard Warner, the head of the anti-stigma group in Boulder, has
been chair of the Stigma Committee of the World Psychiatric Association (WPA)
Global Programme. He also participated in the Pilot Programme in Canada and
applied some of the lessons learned there to the efforts in Colorado.
80
81 Employers
While the results from the Canadian programme were being analyzed, Professor
Warner organized a Local Action Group that included: psychiatrists, people living
with schizophrenia and family members, a schoolteacher, a judge, a journalist and
a representative from a local media agency. One of the first tasks was to conduct a
survey to gain a better first-person perspective on stigma and discrimination.
Of the 56 individuals living with schizophrenia that were interviewed, 32 (66%)
reported that stigma is a major, very severe or overwhelming problem in their lives.
The groups seen as most stigmatizing are ranked here in descending order with the
most stigmatizing first:
• employers or potential employers;
• general health physicians, emergency room staff and hospital staff;
• family members;
• police;
• television news and programmes, as well as newspaper reports;
• co-workers and neighbours;
• the general public.
A majority of family members also identified stigma as a major, very severe or
overwhelming problem in their lives. The groups they identified were:
• family members;
• employers or potential employers;
• co-workers, friends and neighbours;
• newspapers and television;
• the general public.
Based upon these findings, the target groups selected were: employers; the media,
including journalists; police and members of the criminal justice system. With
experiences gained from working with the Partnership Programme in Calgary, the
group also selected high school students as a way to change attitudes of the general
public over time. In April 2000, Eli Lilly and Company awarded a financial grant
to the campaign.
Employers
The Calgary group had encountered challenges in addressing this target group, in
part, because they had not reached key change agents in the business community.
For that reason, the Boulder Local Action Group met early in their planning process
with the president of the Boulder Chamber of Commerce. Fifty per cent of all of the
jobs in Boulder are with just 12 companies, including the University of Colorado.
Developing a strategy to reach and mobilize these 12 companies was seen as having
a great deal of potential for achieving change in employment.
82 United States
Working with the Chamber of Commerce, the group developed an action

plan for working with local employers. The Chamber President also supported a
lunchtime educational presentation on discrimination against people with mental
illness that was made to members.
In 1998, the University of Colorado, Boulder employed 6471 employees; a little
less than one-third (1973) were instructors. Members of the Local Action Group
met with the human resource department managers and employee assistance pro-
gramme staff of the University. Working together with the anti-stigma group, the
university employee assistance programme trained all university supervisors on
the Boulder campus on issues related to mental illness in the workplace in March
2002. A month later, a workshop on mental illness was held at the diversity training
programme for the university’s administrative services.
In general terms, the approach taken with the Chamber of Commerce and efforts
at the University of Colorado have yielded more substantive results than the Calgary
and Brescia initiatives. The Local Action Group was able to meet with human
resource directors and make presentations on mental illness and the effects of its
stigma. Yet from the data available, employers remain one of the most stigmatizing
groups and one of the most resistant to anti-stigma efforts.
Criminal justice system
Professionals in law enforcement and the judiciary often encounter people with
mental illness in acute crisis situations. Surveys in Boulder showed that only a few
of these professionals believed people with mental illness can recover from them.
Working together with the Local Action Group, the Chief Judge of the district
court has held task force meetings with managers and leaders of all the local
criminal justice agencies, including the judiciary, the county sheriff ’s department,
the Boulder city police department, the county jail, the probation department,
community corrections, the district attorney’s office, the public defender’s office,
the mental health centre, the public health department and the alcohol recovery
centre. The goal of the meetings has been to reduce the number of people with
mental illness who are jailed. Police officers, other law enforcement personnel and
members of the judiciary have received training on recognizing mental illness and
have been given ways to deal more effectively with individuals in a crisis.
To date the anti-stigma efforts to this target audience have been extremely
effective. Products of this group include:
• A new multi-agency community monitoring and treatment programme. The
goal of the programme is to assist people living with schizophrenia with
83 Criminal justice system
concomitant substance abuse problems and reduce the possibility they might
end up in jail in the future.
• A training programme for professionals. Targeted to police officers, probation
officers, corrections officers, attorneys and judges, the programme is designed to
reduce fear of the mentally ill. After an initial pilot test with veteran and rookie
police officers, the programme has been broadened to others.
Participants’ knowledge scores improved substantially in pre/post-testing. The

percentage of correct answers among veteran officers rose from 50% to 75%.
Among new recruits, correct answers rose from 62% to 75%. However, ini-
tial pre/post-testing showed no improvements in attitudes toward the ment-
ally ill.
A 4-h training course on adult and child mental health. This course was given
to every member of the Longmont police force in April 2000. (Longmont is a city
located in Boulder County, 16 miles from the City of Boulder.) The officers’ scores
on a pre/post-test on adult mental illness improved by 48%. The proportion of
officers holding misconceptions about the causes of schizophrenia dropped from
24% to 3%, and the proportion holding misconceptions about the usual behaviour
of people with schizophrenia dropped from 82% to 71%. The proportion with
accurate information about when involuntary treatment could be initiated because
of ‘grave disability’ improved from 48% to 71%.
With a faculty that included psychiatrists, individuals living with schizophrenia,
and family members, individual classes were 90-min in length and were presented
at the county justice centre to judges, magistrates, as well as public and private
attorneys and probation officers. After the first training session on schizophrenia,
knowledge scores improved by 58% and attitude scores improved by 17%. Judges
requested further training on juvenile mental health issues and were provided with
two additional 1-h sessions.
Members of the local action group also presented a criminal justice training
programme at the annual meeting of the Colorado branch of the National Alliance
for the Mentally Ill, to diffuse the training programme further into other commu-
nities. Criminal justice and mental health managers have also expressed interest in
replicating the programme.
For that reason, an 8-h training curriculum on mental illness has been developed,
targeted to police and corrections officers. The training course includes an instruc-
tor’s guide and PowerPoint presentation and has been used in a number of
communities in Colorado and other states.
Today, 90-min classes on mental illness continue to be taught at the county
justice centre for judges, magistrates, probation officers, and public and private
attorneys.
84 United States
Media and the general public
Following lessons learned from the Calgary Pilot Programme, the Boulder Action
Group also included a representative from one of the city’s largest newspapers
as one of its members. A media consultant was hired to work closely with the
group.
A number of articles, editorials, letters and guest opinion columns have appeared
in local newspapers on the anti-stigma campaign, the stigma of mental illness and
other related issues. This included a front page article on stigma in the Longmont
Times-Call newspaper.
The Local Action Group has provided journalists of all the Boulder County
newspapers with a resource list of individuals living with schizophrenia, family
members and professionals who can be called upon for information or background
on a variety of mental health topics. This information packet also included sugges-
tions for reducing stigma in reporting news and other stories that refer to mental
illness.
During the initial implementation phase of the programme, as news spread
through the community of the effort, call-in radio programmes have also dealt with
the issues of stigma and prejudice. When Otto Wahl, the Director of the National
Stigma Clearinghouse and author of Media Madness was invited to Boulder by the
Local Action Group to give a public workshop on combating the stigma of mental
illness in the media, he was also featured on one of these call-in programmes.
Working with the Department of Journalism of the University of Colorado, a
content analysis of the Boulder Daily Camera is being conducted to assess media
coverage before and after the campaign. Today, articles, editorials and letters con-
tinue to appear in the local media, keeping the public informed about the impact
of stigma and discrimination on those living with mental illness.
High school students: reaching beyond schools
With assistance of on-site training from members of the Partnership Programme

in Calgary, the Local Action Group in Boulder has developed a consumer speakers’
bureau at the Mental Health Center of Boulder County. Consumer and family
members are given training in public speaking and a representative from each
group speaks to local high school classes.
In the fall semester of 1999, the speakers’ bureau presented to 12 schools and
community groups. In spring semester of 2000, the number rose to 17. In spring
semester 2003, over 20 presentations were made. The speakers’ bureau also pre-
sented to 400 students of Boulder High School at the World Affairs Conference
Symposium.
85 Conclusion
In addition to improving the knowledge and attitudes of students, the group

has been successful in having the Boulder Valley School District implement a new
health curriculum for high school students.
Every year since 2000, an annual competition has been held in Boulder Valley
high schools. Students are asked to produce anti-stigma materials in the form of
posters and artwork. Winners have their artwork featured in displays throughout
the community.
Indeed, it is the addition of communication materials outside the school that sets
the Boulder Programme apart from the earlier effort in Calgary. Having narrowed
the target audience from ‘general public’ to ‘high school students’, the Local Action
Group delivered targeted messages in two media: on transit cards in city buses and
as presentation slides in local cinemas during the summer months.
Cinemas. Cinemas become an even more popular destination for teenagers in
the summertime when school is not in session. For that reason, for 3 months in the
summer of 2002, slides with anti-stigma messages were featured before and after
presentations in two local theatres – with a total of 16 screens.
Eighteen per cent of cinema patrons exiting the cinemas could recall one or
more of the messages. Given the attendance at theatres during the 3 month period
(roughly 60,000), approximately 11,000 people would have been able to recall a
positive message. With the relatively modest costs of this medium (relative to radio
or television advertising), the reach of the messages to the entire audience is pennies
per viewer.
Transit cards/outdoor advertising. For the first 3 months of 2002, transit cards
featuring anti-stigma messages were on display on 50 Boulder buses. The routes
selected were those travelled by students on their way to high school or college. The
theme of these transit cards were that: ‘mental illness does not equal violence’.
Based upon interest in the messages and the relative low cost of the medium,
additional transit cards were created. These cards featured winning entries from
the high school art competition.
Research was not conducted on the cumulative effects of these messages on the
community. However, given the wide distribution of these media, many teenagers
whose knowledge and attitudes were improved through in-class speakers’ bureau
presentations, saw those anti-stigma messages reinforced in the community – at
the movies they attended and on the buses they rode.
Conclusion
The development of training of law enforcement officials is an iterative process.

Among some of the important lessons Richard Warner and the Local Action Group
learned was the importance of particular topics such as suicide and why people
86 United States
with personality disorders are often not admitted to hospital. ‘Because they may
not recognize symptoms of mental illness and how these relate to suicide attempts,
police officers,’ Dr Warner explains, ‘are likely to complain about a patient whom
they brought in for evaluation after a suicide attempt – was treated, then released.
They will tell us: “She got home before I did” ’. Understanding the reasons behind
a psychiatrist’s decision to discharge a patient can also address some of the stigma
these officers may feel toward the medical establishment.
They also learned the importance of the endorsement and presence of the police
chief and other senior officers in sending a message about the value of the training.
(Often these senior officials are not present during training of the night shift.)
Most important of all is the involvement of people living with the illness in the
training. For many officers the only exposure they may have had with individuals
with mental illness is in a crisis situation. This is true for members of the judiciary
as well. Not only did knowledge of schizophrenia improve from 47% to 74% after
the presentations, some judges reported immediate changes in their sentencing
practices for adults and juveniles.
More information and training resources are available on-line at: www.
mhcbc.org.
For more information on the Global Programme in United States,

please contact
• Richard Warner (Coordinator)
Mental Health Center of Boulder County
1333 Iris Ave
Boulder, Colorado 80302, USA
Phone: (+1-303) 443 8500
Fax: (+1-303) 449 6029
E-mail: drdickwarner@aol.com
BIBLIOGRAPHY – UNITED STATES
Corrigan, P.W. (2004). Don’t call me nuts: an international perspective on the stigma of mental
illness. Acta Psychiatrica Scandinavica, 109(6), 403–404.
Priebe, S., Warner, R., Hubschmid, T. and Eckle, I. (1998). Employment, attitudes toward work,
and quality of life among people with schizophrenia in three countries. Schizophrenia Bulletin,
24(3), 469–477.
Thompson, A.H., Stuart, H., Bland, R.C., Arboleda-Florez, J., Warner, R., Dickson, R.A.,
Sartorius, N., Lopez-Ibor, J.J., Stefanis, C.N., Wig, N.N. and WPA, World Psychiatric Asso-
ciation (2002). Attitudes about schizophrenia from the pilot site of the WPA worldwide
87 Bibliography – United States
campaign against the stigma of schizophrenia. Social Psychiatry & Psychiatric Epidemiology,
37(10), 475–482.
Wahl, O.F. (1999). Mental health consumers’ experience of stigma. Schizophrenia Bulletin, 25(3),
467–478.
Wahl, O.F. and Harman, C.R. (1989). Family views of stigma. Schizophrenia Bulletin, 15(1),
131–139.
Wahl, O.F. and Kaye, A.L. (1992). Mental illness topics in popular periodicals. Community Mental
Health Journal, 28(1), 21–28.
Wahl, O.F. and Lefkowits, J.Y. (1998). Impact of a television film on attitudes toward mental
illness. American Journal of Community Psychology, 17(4), 521–528.
Warner, R. (1999a). Environmental interventions in schizophrenia. 1: the individual and the
domestic levels. New Directions for Mental Health Services, 83, 61–70.
Warner, R. (1999b). Environmental interventions in schizophrenia. 2: the community level. New
Directions for Mental Health Services, 83, 71–84.
Warner, R. (1999c). Reducing the stigma associated with schizophrenia. In: Maj, M., ed. Evi-
dence and Experience in Psychiatry: Volume 2, Schizophrenia. John Wiley & Sons, New York,
pp. 284–286.
Warner, R. (1999d). Schizophrenia and the environment: speculative interventions. Epidemiolo-
gia e Psichiatria Sociale, 8(1), 19–34.
Warner, R. (2000). The Environment of Schizophrenia: Innovations in Practice, Policy and Com-
munications. London: Routledge (Lithuanian edition, 2003. Russian and Greek editions,
2004).
Warner, R. (2001a). Combating the stigma of schizophrenia. Epidemiologia e Psichiatria Sociale,
10(1), 12–17.
Warner, R. (2001b). Community attitudes towards mental disorder. In: Thornicroft, G. and
Szmukler, G., eds. Textbook of Community Psychiatry. Oxford University Press, Oxford.
Warner, R. (2001c). The prevention of schizophrenia: what interventions are safe and effective?
Schizophrenia Bulletin, 27(4), 551–562.
Warner, R. (2003). How much of the burden of schizophrenia is alleviated by treatment? British
Journal of Psychiatry, 183, 375–376.
Warner, R. (2004). Recovery form Schizophrenia: Psychiatry and Political Economy, 3rd edn.
Brunner-Routledge, Hove and New York.
Warner, R. and Mandiberg, J.M. (2003). Changing the environment of schizophrenia at the
community level. Australasian Psychiatry, 11(Suppl.)
Warner, R., de Girolamo, G., Belelli, G., Bologna, C., Fioritti, A. and Rosini, G. (1998). The quality
of life of people with schizophrenia in Boulder, Colorado, and Bologna, Italy. Schizophrenia
Bulletin, 24(4), 559–568.
9
Poland
On 15 September, 2002, an archway – festooned with flowers and garland – stood

in the central square in Kraków, Poland. Those in the crowd who had come to
celebrate the first Day of Solidarity with People Suffering from Schizophrenia were
invited to step through the doorway and sign a petition affirming their solidarity
to those living with schizophrenia.
Similar events were held in 15 other cities around Poland, including Warsaw.
One hundred and eighty-seven media outlets – newspapers, magazines, radio and
television – covered the nationwide celebration.
In 2003, the event had doubled in size. Thirty-two cities held public exhibitions:
art displays, poetry readings and theatre performances by individuals living with
schizophrenia.
That same month, the Polish Ministry of Health named the ‘Open the Doors’
programme the ‘Success of the Year in Health Care’. The work begun by Dr Andrzej
Cechnicki and Anna Bielañska in 2000 has evolved into one of the most successful
national efforts in the global World Psychiatric Association (WPA) programme.
Putting the structure in place

Poland is a nation of roughly 38.5 million people, covering 312,685 km2 . A national
anti-stigma effort that far-reaching requires careful coordination of many people.
In March 2000, a core team of four professionals, including Dr Cechnicki and
Ms Bielañska of Jagiellonian University in Kraków, held its first meeting with
15 individuals from eight different regions of the country. These team members
included professionals and members of family organizations.
Regular monthly meetings were key to the coordination of the different regions.
Similar in style to the monthly meetings held in the more localized Calgary
initiative, the group would review progress and set new objectives for the future.
Another important element was the support of the Polish Ministry of Health,
the Ministry of Work and Social Care, the Polish Psychiatric Association, and Eli
Lilly and Company. Working in cooperation with these groups, the Polish team
88
89 Assessing needs
established a four-step plan for its nationwide effort. The success of each step was
in part dependent on the successful implementation of the one that came before:
1 Assess the needs of individuals living with schizophrenia and family members
to identify areas of stigma and discrimination.
2 Prepare information about schizophrenia and the stigma associated with it.
This approach presents the perspectives of the consumer, family and mental
health professionals to be distributed nationally to both print and broadcast
journalists.
3 Develop an educational programme based on the experiences of individuals
living with schizophrenia and professionals, including psychiatrists, teachers,
journalists, priests and clerics.
4 Hold a series of symposia on schizophrenia at both the national and local levels,
bringing together psychologists, general practitioners, social workers, people
living with schizophrenia and family members.
Assessing needs
A number of surveys have been conducted in the first 4 years of the initiative in
Poland, using both qualitative and quantitative methods.
The first round of research included focus group interviews with people living
with schizophrenia and family members. While the information collected gave
Local Action Group members first-hand accounts of the stigma experienced by
those living with schizophrenia, the data was somewhat limited in scope and
its applicability to the programme. In 2004, in the southern Malopolska region
of Poland, the subjective experiences of a larger group of 200 individuals were
investigated.
In 2001, Jacek Wciórka and Bogda Wciórka organized a national survey of public
attitudes towards those with mental illness. The researchers sought to investigate:
• the public’s understanding of the term ‘schizophrenia’;
• the degree to which is it used in the social experience;
• the social perception and position of schizophrenia;
• factors which might affect how individuals view medical treatment of the illness
and the social climate that surrounds individuals diagnosed with the illness.
The research team, working with CBOS (Public Opinion Research Center), sam-
pled 1000 adults from all over Poland. Individuals were selected at random and
interviewed by telephone.
The survey found that the majority of the general public lacked sufficient
information and knowledge about schizophrenia, and had negative stereotypes
90 Poland
of those living with the illness. Most expressed stigmatizing beliefs (e.g. people
with schizophrenia are violent) and held overall ambivalent feelings towards those
with mental illness.
In July 2003, a study of the opinions of young Poles (ages 15–35 years) was
conducted. A number of clear conclusions could be drawn about this group:
• Roughly one in four reported that they knew nothing about schizophrenia.
• The self-reported level of social acceptance of those with schizophrenia was high;
a majority declared openness and support for those living with the illness.
• Those with higher education (18%) and living in larger metropolitan areas
(22%) had better knowledge about the illness.
• Individuals with elementary school education (34%) and living in smaller vil-
lages (33%) reported no knowledge about the illness.
• A majority of young Poles knew little about the age groups typically at risk and
were unaware that first symptoms appear in younger adults.
• 80% reported that those living with schizophrenia should not be isolated and
that if properly treated, they can return to the community.
Overall social distance was small with a majority being open to individuals with
schizophrenia living in their neighbourhood, and said that they would study, work
and socialize with those having a mental illness.
While reporting that they would like to know more about the illness, 49% said
they wanted the information to come from television compared to 41% reporting
they wanted their information from newspapers, and 24% interested in learning
about the illness from a meeting with someone with the illness. Only 17% reported
wanting to learn about it in school or university.
A national perspective
The national programme in Poland approached the challenge of covering the coun-
try using a strategy different from that used in other programmes. The National
Steering Committee of four and the fifteen regional representatives developed a
series of programmes and agreed to replicate each in different cities or regions
after initial pilot testing in one or two towns or villages. The result is a programme
that has gradually built up a consistent momentum over time.
A non-governmental organization dedicated to schizophrenia

‘Open the Door’ is the name of the non-governmental organization (NGO) of
individuals living with schizophrenia that was established in Poland. The goal of
this NGO was education of those living with schizophrenia and their families. The
group also seeks to educate professionals and other social groups.
91 A national perspective
Presentations to these groups focus on issues affecting the lives of people living
with schizophrenia. These presentations allow individuals living with the illness to
share information with other consumers on the illness itself and on the self-stigma
that can keep many from taking a more active role in their treatment. Professionals
often participate in these seminars and some of these presentations involve lessons
the medical professional has learned from hearing the stories of people who live
with the illness about the stigma and discrimination they experience first hand.
The overall goals of the ‘Open the Door’ Association are:
• to increase the number of educational seminars at psychiatric conferences
regarding the subjective experience of illness and recovery;
• to become educators for politicians, clergy and other groups at seminars about
mental health problems on the local and national levels;
• to increase participation of NGO spokespersons in the press, as well as in radio
and television.
A national magazine produced by individuals living with schizophrenia entitled
‘For Us’ further helps unify the national effort. The magazine contains stories of
those living with schizophrenia, as well as resources available for those seeking
treatment or support.
Teachers and students

The group also took a national approach to introduce mental health curricula
specific to schizophrenia into existing health courses in schools. After pilot testing
the instructional materials in several different regions, the Local Action Group is
currently working to integrate the curricula into the national educational system.
Employers
Cities and communities in which Local Action Groups have been created have
established programmes for sheltered employment. Those living with schizophre-
nia are employed in jobs at a hotel coffee-bar. The hotel project is the model for
setting up other ‘social firms’ projects in Poland.
Church and clergy

The population of Poland is roughly 95% Catholic (75% consider themselves to be
‘practising’ Catholics). The Local Action Group met with the national organization
of the episcopate, which agreed to an educational programme for members of the
clergy.
In addition to seminars conducted with the joint cooperation of psychiatrists and
the clergy, clerics and monks of the Catholic Church have sponsored fund-raising
activities to assist in housing for people with schizophrenia. To date, progress in this
92 Poland
area has been slow given complexities and approval processes within the institution
of the Church.
A Day of Solidarity
In an effort to further unify efforts on a national level, the group has worked to
establish September 15 as‘Day of Solidarity with People Suffering from Schizophre-
nia’. As noted earlier, the event in 2002 was held in 16 towns and cities. In 2003, this
network had expanded to smaller villages as well and totalled 32 communities.
Across the country, mayors of cities and villages, bishops and other clergy,
members of the press, and representatives from various NGOs stepped through
doorways erected in public squares to show their solidarity for those living with
schizophrenia. Cultural events held in many of these locations were broadcast on
television.
As a result of this national effort, Polish television produced an educational
programme with the active participation of individuals living with schizophrenia.
Overall, the Local Action Group has also presented anti-stigma activities as part
of cultural events:
• from 2001 to 2003, more than 10 exhibitions and poetry readings were presented
by people living with the illness;
• in 2001, the City of Lodz hosted a theatre festival organized by those with mental
illness;
A special focus on youth

Based on the research conducted with young Poles in 2003, and on the fact that
first symptoms typically appear in late adolescence and young adulthood, the
Local Action Group in programme decided to extend an already successful effort
and focus on this younger population.
The 14th of September, the day before the ‘Open the Door’ Day of Solidarity,
was set aside for young people. Workshops were held with a variety of young
people, including individuals living with schizophrenia, to educate on the
challenges of mental illness but also to celebrate creativity and art with musical
and theatrical events. The group promoted their theme ‘every one hurts in a
different way’ across the country.
The largest paper in Poland, Gazeta Wyborcsa, is supporting the programme as
well. It actively promotes an effort to raise educational standards in the schools to
include information on mental health.
The group continues to build on this national interest and awareness, and is
planning events throughout the year focused on younger audiences.
93 Conclusion
• following a screening of A Beautiful Mind, a lecture and discussion about

schizophrenia with secondary school pupils and students of psychology,
medicine and rehabilitation.
A programme called ‘Together in Art and Life’ has been developed to promote
the creative expression of those living with mental illness. The group supports art
therapy, organizes exhibitions, auctions, art workshops, courses and conferences
as well as fosters relationships with professional artists.
Conclusion
The national effort in Poland continues as of this writing. In 2004, the group
held the third National Day of Solidarity with People Suffering from Schizophre-
nia on 12 September. In Kraków, an exhibition entitled ‘Art Against Stigma’ was
held in the National Museum. A ‘Poetry Night’ was held in the Slowacki The-
atre. During that event the Polish actress Anna Dymna read the poems written by
people with schizophrenia and by others, such as Emily Dickinson and Friedrich
Holderlin.
Again, the symbolic door was featured in town centres through which individuals
step to sign a petition of solidarity.
Compared to other initiatives in the WPA Global Programme, Poland differs in
three notable ways:
• Coordination from a central organizing group extending outward, in collabora-
tion, with regional groups, as opposed to regional activities developed independ-
ently and reporting back.
• The creation of a high-profile ‘National Day of Solidarity’ which drew significant
attention of the media and generated camaraderie among groups who were
geographically distant but working on a common event.
• Its collaboration with religious clergy on the local and national level.
For more information on the Global Programme in Poland, please contact

• Anna Bielánska (Coordinator)
Day Treatment Centre
Department of Psychiatry of Jagiellonian University
31-115 Kraków, Sikorskiego 2/8 Poland
Phone/Fax: (+48-12) 422 5674
E-mail: bielania@su.krakow.pl
94 Poland
• Andrzej Cechnicki (Advisor)

Day Treatment Centre
Collegium Medicum, Jagiellonian University
31-115 Kraków, Sikorskiego 2/8 Poland
Phone: (+48-12) 633 9647
Fax: (+48-12) 422 5674
E-mail: mzcechni@cyf-kr.edu.pl
BIBLIOGRAPHY – POLAND
Chadzynska, M., Spiridonow, K., Kasperek, B. and Meder, J. (2003). [Quality of life of
schizophrenic patients and their caregivers – comparison.] [Polish] Porownanie jakosci zycia
osob chorych na schizofrenie i ich opiekunow. Psychiatria Polska, 37(6), 1025–1036.
Dabrowski, S. (1998). [Specialist community social services as a form of community social sup-
port.] [Polish] Specjalistyczne uslugi opiekuncze jako forma oparcia spolecznego. Psychiatria
Polska, 32(4), 443–451.
Kucharska-Pietura, K., Grzywa, A. and Debowska, G. (1998). [Attitudes of Polish and British
high school students towards the mentally ill and their beliefs in the causes of mental illness.]
[Polish] Postawy licealistow z Polski i Wielkiej Brytanii wobec osob psychicznie chorych i ich
przekonania na temat etiologii chorob psychicznych. Psychiatria Polska, 32(6), 711–722.
Prot-Herczynska, K. (1998). [The study of the costs of schizophrenia.] [Polish] Badanie kosztow
schizofrenii. Psychiatria Polska, 32(3), 307–318.
Wojciechowska, A., Walczewski, K. and Cechnicki, A. (2001). [Correlations between some fea-
tures of social networks and treatment outcome in patients with schizophrenia three years
after initial hospitalization.] [Polish] Zaleznosci miedzy wlasciwosciami sieci spolecznej a
wynikami leczenia chorych na schizofrenie w trzy lata od pierwszej hospitalizacji. Psychiatria
Polska, 35(1), 21–32.
10
Japan
In 2002, the Japanese Society of Psychiatry and Neurology (JSPN) and the national
family organization, Zenkaren, succeeded in changing the name of ‘schizophrenia’
in order to diminish its stigmatizing effect. The event was unprecedented. There is
no other example of a joint effort by psychiatrists and family members to change
the name of an illness to reduce the stigma associated with it.
The change of the term ‘schizophrenia’ has a different significance in Japan
from what it might have in most other countries. In 1937, the terminology
committee of JSPN translated the term schizophrenia into , seishin-
bunretsu-byo, and reported it as new name of Kraepelin’s dementia praecox (i.e.
schizophrenia = Dementia praecox). At the time, the concept of schizophrenia
was almost identical to dementia praecox and effective medications were unavail-
able. They believed , seishin-bunretsu-byo, to be untreatable with
no chance for recovery and with progressive deterioration. In addition, because
, seishin-bunretsu-byo literally means ‘split mind’, Eugen Bleuler’s
attempt to describe the individual as ‘cut off from’ or ‘dissociated from’ affect
became in the translation a description of an individual cut-off from the essence
of his or her humanity. As one individual living schizophrenia put it speaking at
the World Psychiatric Association (WPA) Congress in 1998, ‘This term tells me I
am cut off from my soul’.
Earlier, we described attempts to disrupt the vicious cycle of stigmatization with
interventions at different points on the cycle. In the case of efforts in Japan, by dis-
rupting the stigma of the name itself, the Japanese hope to reduce the downstream
social consequences of the labelling.
In 1993, Zenkaren, the National Federation of Families with Mental Illness, had
made a formal request to the JSPN to change the Japanese term for schizophre-
nia. The JSPN organized a Committee on Concepts and Terminology of Mental
Disorders to look into the problem.
In 1998, the JSPN began working with the WPA Global Programme against
Stigma and Discrimination because of Schizophrenia. The efforts to possibly
change the terminology – and change the associated stigma – were of considerable
interest to the global effort. If effective, a similar change might be promoted in other
95
96 Japan
countries using translations or descriptions of mental illness. An announcement

of that collaboration was made at the World Congress of Psychiatry in Hamburg,
Germany.
Research regarding the term was conducted with psychiatrists, people with
schizophrenia and their family members. The committee narrowed the field to
three options in 2001:
• The rendering of the word ‘schizophrenia’ into katakana, a symbol system to
phonetically designate words, generally of foreign origin – sukizofurenia.
• Togo-shiccho-sho, , meaning ‘thought integration disorder’.
• ‘Kraepelin–Bleuler Disease’ referring to Emil Kraepelin and Eugen Bleuler, two
of the psychiatrists chiefly responsible for the systematic diagnosis of the illness
and its course.
In 2001, in an interview with a Japanese newspaper, Professor Mitsumoto Sato,
Chairman of the Committee, discussed the renaming of schizophrenia and the
alternatives being considered. Among those living with the illness, he reported,
one-third were accepting of the old name, one-third would have used the foreign
name, sukizofurenia; and one-third preferred the use of the new word. After a series
of surveys of JSPN council members and the Zenkaren members, a public hearing
was held. In February 2002, based upon responses from all groups, the Board of
JSPN selected a term and proposed it to the general assembly of JSPN in August
2002. Then, the decision to use , Togo-shiccho-sho, was announced at
the WPA Congress in 2002 in Yokohama, Japan. Following this announcement, the
Ministry of Health, Labour and Welfare immediately approved the use of the new
name in every public document relating to the Mental Health and Welfare Act and
for medical fee invoicing.
Notices were also sent out to all department heads in Japan’s 12 major cities
and all local governments. Releases to the media and press requested that they no
longer use the older term.
Follow-up research on effectiveness
To measure the effectiveness of the diffusion of the new term, the Japanese
government supported five studies.
Study 1: Japanese psychiatrists

Many Japanese psychiatrists are reluctant to tell their patients what their diagnosis
is. This reluctance is even sharper in the case of ‘schizophrenia’ than with other
diagnoses. The first study was conducted after the introduction of the new term
and assessed all 8517 psychiatrists of the JSPN. A questionnaire and postage-paid
97 Follow-up research on effectiveness
reply were sent to the association list. Researchers received 4027 responses (47.3%).
The research found:
• The new and old names were being used together.
• The older the doctor, the more negative the attitude towards informing the
patient of the diagnosis or using the new name; compared to those in outpatient
clinics, psychiatrists affiliated with university and psychiatric hospitals were more
likely to use the new term and inform patients of the diagnosis.
• Results varied in different regions of the country in terms of psychiatrists
tendency to inform the consumer or family members.
A study was also conducted of the frequency of its use in official documents –
as required by the Mental Health and Welfare Act – and for medical fee invoicing.
In the period from April 2002 to January 2003, 2812 documents in the Miyagi
Prefecture were examined. By December 2002, use of the new name had increased
to 76%. A second survey of 61 Prefectures in Japan found the term used an average
of 78% of the time (Sato et al., 2004).
Study 2: Individuals diagnosed with schizophrenia

Ten questionnaires were sent to all 512 rehabilitation facilities. These question-
naires were forwarded to those diagnosed with schizophrenia and 2500 (48.8%)
responded. Among the results gathered from this group:
• 72% of the respondents said they had been treated for schizophrenia for more
than 5 years;
• 51% regularly visit the rehabilitation facility but live with parents or friends;
• the majority never discuss the illness except with their doctors;
• while many respondents knew of the new term, few used it to refer to themselves.
Study 3: Family members

The third study examined the attitudes of relatives regarding the name change.
Questionnaires were sent to members of the Zenkaren Family Association and 987
(39.5%) responded.
Seventy-seven per cent reported feeling positive about the change of the term.
Outside of the local medical administrative office, family members felt that the
local community was not supportive of the family or the individual living with
schizophrenia.
Study 4: General public/college students

The fourth study examined community attitudes about the change of the termin-
ology and general attitudes regarding those with the illness. A survey was conducted
among two groups of students at Keio University.
98 Japan
Both groups watched the movie, A Beautiful Mind, the story of Nobel Prize
winning mathematician and consumer, John Nash. The first group of 133 students
were given a pre-test using the older, traditional term. The second group was given
a questionnaire using the new name.
The two groups showed marked differences in their responses:
• before watching the film, those given the newer term reported a lower negative
image of the term than those in the group using the traditional term;
• after viewing the movie, the new name had a further positive image;
• the effect upon attitudes after viewing the movie was lower among those using
the older term;
• the group given the older term showed improved attitudes regarding social
disadvantages after viewing the film;
• both groups showed improved attitudes towards the efficacy of treatment after
viewing the film.
Study 5: Psychiatric professionals in universities

A survey was conducted among psychiatric professors teaching undergraduate and
postgraduate students. Questionnaires with postage-paid replies were sent to all 84
national psychiatric professors regarding their attitudes towards teaching students
about the new term. Roughly 52% (44 professors) responded.
To the question ‘How do you educate postgraduates on informing patients about
schizophrenia?’ a majority advised their students to use discretion.
When asked ‘How often do you use the traditional term for schizophrenia?’,
respondents said they used the term in clinical and educational situations more
often than in written documents. When asked ‘How often do you use the new term?’
they reported using it more often with families and in educational situations.
Overall, the respondents said they used both terms in educational settings, but
not in documentation.
Guidelines for the future
Overall, one major challenge in the transition to the new term is that those who
have lived in the community in the past have received pensions of 83,000 yen per
month from the government for the diagnosis of ‘severe schizophrenia’. Individuals
living with schizophrenia and their families have expressed concern that changing
the diagnosis may lead to a suspension of government funding.
The Japanese Local Action Group is currently investigating ways to help, make
the transition in the terminology without jeopardizing benefits.
In addition, the group has recommended guidelines for describing the illness
to various target audiences. These guidelines call for using the new term without
99 Working in the community
explaining it in relation to the older term. Guidelines are being developed for:
medical specialists, people living with the illness and family members, and the
general public including journalists and the media.
In 2004, the Local Action Group began examining ways to further involve psy-
chiatric professors in the active dissemination of the new term. Because of their
distance from the clinical setting and influence on students at both the under- and
postgraduate levels, the Local Action Group sees this as an especially important
initiative.
Through their continued efforts at all levels – from the individual consumer to
society, from teacher to student – the Japanese Local Action Group is working to
implement the new term and in turn, achieve a reduction in stigma and prejudice.
Understanding that this second goal would require more than a word change, they
have pursued additional anti-stigma interventions.
Working in the community

In 2000, the JSPN formed an ad-hoc committee to develop and implement an
anti-stigma programme in cooperation with the WPA global initiatives. After
several initial planning meetings, the group expanded its membership to include
politicians from the Diet, patient activists and representatives from family
associations.
Space does not allow us to explore all of the unique aspects of psychiatry as it
is practiced in Japan. Three features are important, however, in understanding the
aspects of the interventions undertaken:
• individuals living with schizophrenia spend on average much longer periods in
institutions than in other industrialized countries;
• social stigma for the individual and the family in the community is especially
high;
• polypharmacy and the overall consumption of anti-psychotics is one of the
highest per capita in the world.
Three sites were selected for initial pilot testing of the programme in Japan:
Tokachi (in the northern Prefecture), Sendai (in the Miyagi Prefecture) and
Okayama (west of Tokyo). Groups were then organized in these cities and included:
physicians, social workers and psychologists as well as individuals living with
schizophrenia and family members. With its infrastructure in place, the national
initiative held a public forum on 27 August 2002 at the WPA World Congress in
Yokohama.
Each region has developed interventions based on its own community profile.
Yet all data has been presented to the central group affiliated with the JSPN.
100 Japan
Tokachi
The northern island of Hokkaido has a total population of 5,702,000 yet the Pre-
fecture of Tokachi alone is geographically 5 times the size of metropolitan Tokyo.
Obihiro, the capital of Tokachi, has a population of 171,557.
The Local Action Group assembled there consisted of 11 members, actively
involving people living with schizophrenia in research design and programme
preparation. The group selected high school students as the first target for their
intervention.
Pre- and post-tests were conducted in two high schools. Of the 303 students,
174 were male and 129 were female. The group used the Alberta questionnaire
translated into Japanese with slight modifications.
In one class a member of a consumer advocacy group shared his own experiences
of schizophrenia and the associated stigma. In the second class, a psychiatrist
presented a medical explanation of schizophrenia, which included information on
the ratio of in- and outpatients, the number of psychiatric beds, comparison of the
average length of hospitalization between Japan and other countries.
Pre- and post-test results indicated that students rated the time spent with
the person diagnosed with schizophrenia more effective than the time with the
psychiatrist. Measurements of knowledge and attitudes bore out this claim.
In August 2003, a focus group intervention indicated that individuals diagnosed
with schizophrenia find family members, medical staff, employers and co-workers
among the most stigmatizing groups.
Based on these finding, the group developed additional interventions. The first
of these were events and meetings at which people with schizophrenia and their
families meet with other families as well. These individuals are encouraged to share
their experiences and discuss strategies for developing the communal support that
may be lacking in their neighbourhoods.
To address the issues surrounding challenges to employment, the group has
made contact with labour unions. The plan is to present educational programmes,
which include interactive games and group discussions with members of these
unions to decrease the stigma associated with schizophrenia and enlist the support
of unions for those living with the illness.
Sendai
The city of Sendai, located in the northeast of the central island of Japan, has a
population of 1,024,80. It is the capital of the Miyagi prefecture.
In 1982, the Japanese government introduced statutory home help service for
individuals with physical disabilities. In 1999, an amendment of the Mental Health
101 Okayama
and Welfare Act endorsed home help services for individuals living with mental
illness. Research by Zenkaren found that a significant number of home-helpers
expressed anxiety about working with individuals with mental illness (Maruyama
et al., 2001.)
To change this, two different interventions were conducted. In the first, home
helpers were segmented into discussion groups based upon the number of patients
in their charge. The groups discussed:
1 the kinds of stigma and discrimination, which mentally ill patients face;
2 the causes of this stigma and discrimination;
3 what is needed to reduce that stigma.
Following this discussion, a psychiatrist presented a lecture on the prevalence,

symptoms, course, prognosis, cause, treatment and rehabilitation of the illness.
In the second intervention session, the lecture from the psychiatrist was followed
by a discussion that included individuals living with schizophrenia, who dealt with
the topics of stigma and discrimination discussed in the first session.
Research was conducted in two districts in Sendai with 85 home helpers partici-
pating. Ninety-seven did not participate. Overall, in this group, interactions with
people living with schizophrenia significantly improved attitudes. Furthermore,
when research was compared between participants (59 questionnaires completed)
and non-participants (43 of whom agreed to complete the questionnaires), par-
ticipants showing a marked increase in knowledge and decrease in social distance
when compared with non-participants.
Another significant outcome of this intervention is that the people with
schizophrenia, who participated in the intervention described above, continued
meeting and established the first self-help group for mental illness in that district.
Okayama
Okayama Prefecture is located in the western portion of the central island of Japan.
The population of Okayama City is 626,642, roughly one-third of the population
of the overall Prefecture.
The Local Action Group, led by Dr Kenzo Fujita, consists of nine professionals,
family members and individuals living with the schizophrenia. The educational
format used was similar to that in both Tokachi and Sendai; however, the target
group chosen was different.
Local welfare commissioners are retired and elderly members of the commu-
nity charged with assisting neighbours in receiving welfare services they may
require. Given the tendency for more elderly men and women to display greater
102 Japan
social distance towards those with mental illness, this was viewed as a particularly
challenging target group.
A total of 234 local welfare commissioners participated in the research. They
were divided into three groups of 78 each. The first group was given conventional
training of a lecture by a psychiatrist. The second group received a similar lecture
which was then followed by a ‘get-acquainted’ session involving five-to-seven com-
missioners, one or two mental health professionals, and two or three individuals
living with schizophrenia.
Results from Okayama reinforce the importance of personal contact with an indi-
vidual living with mental illness in overcoming stereotypes and stigma. Following
this intervention, patient’s advocates were recruited publicly and they continue to
assist in ongoing anti-stigma efforts with this target audience.
Moving forward
The finding of the three Japanese Local Action Groups confirmed long-standing
research from other countries on the effectiveness of personal contact in improv-
ing attitudes towards those with mental illness. More important, however, is the
momentum generated through the coordination of the three centres.
In 2003, a Local Action Group was established in Ichikawa. The groups consist
of the president of the district association for medical doctors, a staff member of
the health centre, a city hall officer, a journalist, a consumer and a family member.
The group has conducted five focus groups to identify sources of stigma and
discrimination which has mirrored findings from Tokachi.
The Local Action Groups are also meeting regularly with members of the Diet to
make them more aware of legislation and government action that can reduce stigma
and discrimination, and provide greater support for those living with mental illness.
The web site, www.openthedoors.com, has also been translated into Japanese
and is routinely updated with information for those living with schizophrenia, their
families and professionals: http://www.openthedoors.com/japanese/index.html.
For more information on the Global Programme in Japan, please contact

• Mitsumoto Sato (Coordinator)
Tohoku Fukushi University
1-8-1 Kunimi, Aoba-ku Sendai, Miyagi 981-8522, Japan
E-mail: mitsu@tfu-mail.tfu.ac.jp
• Yuki Nishimura
Health Center, Keio University
103 Bibliography – Japan
4-1-1 Hiyoshi, Kohokuku, Yokohama, Kanagawa 223-8521, Japan

E-mail: ynishi@hc.cc.keio.ac.jp
• Masaaki Nishio
Department of Psychiatric Rehabilitation
National Institute of Mental Health
Konodai 1-7-3, Echikawa, Chiba, Japan
E-mail: nishio@ncnp-k.go.jp
REFERENCES – JAPAN
Sato, M., et al. (2004). Correction of stigma against schizophrenia by renewing the name and dis-
ease concept of schizophrenia in Japan. [Japanese]. Journal of Comprehensive Welfare, 2, 17–33.
Maruyama, Y., Taira, N., Mita, Y. and Oshima, I. (2001). The role of people with mental disorders
to reduce discrimination and stigma. Society for Disability Studies 2001 Conference Proceedings,
p 33–37.
BIBLIOGRAPHY – JAPAN
Anzai, N., Yoneda, S., Kumagai, N., Nakamura, Y., Ikebuchi, E. and Liberman, R.P. (2002).
Training persons with schizophrenia in illness self-management: a randomized controlled
trial in Japan. Psychiatric Services, 53(5), 545–547.
Chong, M.-Y., Tan, C.H., Fujii, S., Uang, S.-Y., Ungvari, F.S., Si, T., Chung, E.K., Sim, K.,
Tsang, H.-Y. and Shinfuku, N. (2004). Antipsychotic drug prescription for schizophrenia in
East Asia: rational for change. Psychiatry and Clinical Neurosciences, 58, 61–67.
Hershey, L. (2001). Researchers find limited support for independence in japan: people with
physical and mental disabilities face two distinct sets of obstacles. Disability World, Issue no. 9.
Ito, T. (2004). [Medical, practical and sociocultural significance in changing the disease name
for schizophrenia in Japan.] [Japanese] Seishin Shinkeigaku Zasshi – Psychiatria et Neurologia
Japonica, 106(3), 321–325.
Nakane, A. (2004). [Influence of changing the disease name for schizophrenia on Japanese
patients’ quality of life.] [Japanese] Seishin Shinkeigaku Zasshi – Psychiatria et Neurologia
Japonica, 106(3), 326–331.
Ono, H. and Nishimura, Y. (2004). [Change in the disease name for schizophrenia in Japan and
its effect on informed consent given by physicians.] [Japanese] Seishin Shinkeigaku Zasshi –
Psychiatria et Neurologia Japonica, 106(3), 313–316.
Pearson, N.O. (2004). Suicides in Japan hit record high in 2003. The Washington Post, The
Associated Press.
Sato, M. (2004). [Changing the disease name for schizophrenia in Japan.] [Japanese] Seishin
Shinkeigaku Zasshi – Psychiatria et Neurologia Japonica, 106(3), 311–312.
104 Japan
Takagi, S. (2004). [Process and future tasks in changing the disease name for schizophrenia in
Japan.] [Japanese] Seishin Shinkeigaku Zasshi – Psychiatria et Neurologia Japonica, 106(3),
332–334.
Takei, N., Inagaki, A., and JPSS-2 research group. (2002). Polypharmacy for psychiatric
treatments in Japan. The Lancet, 360, p 647.
Uranaka, T. (2000). Local autonomy put to test by new nursing care program. The Japan Times.
The Japan Times Ltd.
Yamakado, T. (2004). [Influence of changing the disease name for schizophrenia on clinical prac-
tice of psychiatry in community psychiatric hospitals in Japan.] [Japanese] Seishin Shinkeigaku
Zasshi – Psychiatria et Neurologia Japonica, 106(3), 317–320.
Phase IV
Slovakia 107
Turkey 112
Brazil 117
Egypt 123
Morocco 128
United Kingdom 133
Australia 139
Chile, India and Romania 142
11
Slovakia
‘The boss is the patient.’ It is a phrase that Pětr Nawka uses in his talks on fighting the
stigma and discrimination because of schizophrenia. ‘Real reform,’ he adds, ‘arises
from the needs of the patient.’ The Boss is the Patient has also become the title of
a film developed in a collaboration between Dr Nawka and Irsinnig Menschlich
(Madly Human), the consumer activist group in Leipzig, Germany.
Prior to organizing the Local Action Group in Slovakia with Charlene Reiss,
Dr Nawka had already begun to develop innovative ways of engaging individuals
living with schizophrenia in confronting the self-stigma that can accompany the
experience of schizophrenia. In Slovakia, he introduced the concept of stigma-
journaling, having individuals record their experiences of stigma. The video project
in Leipzig was conducted in the same spirit of empowering people living with the
illness, using the video camera as a kind of electronic journal to record thoughts,
ideas and experiences.
A centrepiece of Dr Nawka’s presentation and approach is his reliance upon a
‘tetralogue model’ in addressing issues related to treatment of psychiatric illnesses.
The four components of this model are individuals living with schizophrenia, pro-
fessionals, family members and caregivers, and society. Only by addressing the
needs of all four constituencies in the ‘conversation,’ Nawka maintains, will effective
treatment be possible. Opposition from any one area – a lack of funding, insufficient
support from physicians or family, or an absence of active involvement from the
individual living with the illness themselves can doom the most well-intentioned
effort. As Dr Nawka puts it: ‘consumers, their relatives and professionals com-
ing together to form a trialogue, makes the possibility of bringing society into
tetralogue easier – demonstrating the ability of the trialogue’s participants to
overcome self-stigma and mutual stigma as well.’
Starting in Michalovce
The city of Michalovce, located in Eastern Slovakia, has a population of 40,000.
The first meeting of the Local Action Group included the President of the
107
108 Slovakia
National Organization of Consumers’ Organizations, the President of the National

Organization of Relatives, one psychiatrist and two non-medical volunteers.
One of the first initiatives of the Local Action Group in January 2001 was a survey
of individuals living with schizophrenia, families, and mental health professionals
in Michalovce, regarding their personal experiences of stigma and discrimination.
Based on these results, the group selected their initial target audiences:
• general and mental health care professionals;

• families;
• high school students and teachers;
• general public through a focus on journalists and other members of the media.
The group agreed upon the name Otvorme dvere – otvorme srdcia (ODOS)
(Open the Doors, Open your Hearts). They established the group as a new Non-
Governmental Organization (NGO) to address the goals of the World Psychiatric
Association (WPA) global programme for Slovakia and determined the need to
bring on new partners. ODOS is now a member of the Slovak League for Mental
Health. With the assistance of Eli Lilly and the League of Mental Health, the group
was able to hire a director and secretariat for the program and successfully expand
their efforts to the country’s capital of Bratislava.
The four goals of the Local Action Group have been:
• to reintegrate people with mental illness back into society;

• to protect the human rights of people with mental illness;
• to achieve parity between the treatment of physical and mental illnesses in
Slovakia;
• to promote the mental health of society as a whole.
Key to the group’s mission is an effort to help individuals living with the illness to
overcome self-stigma and become more actively involved in their own treatment.
For example, members of the Patients’ Advocates Club visit individuals during
hospitalization to address the questions and fears they may have.
Working with the Slovak League of Mental Health, the Local Action Group has
been successful in keeping the issue of stigma as a focus of professional conferences.
Stigma has also become a subject of discussion and action with patient advocacy
groups and events on Mental Health Day.
ODOS has also formed a partnership with the Slovak Association of Relatives,
Opora. In cooperation with the European Federation of Associations of Families
of Mentally Ill People (EUFAMI), an educational project was developed for people
living with the illness, family members and medical professionals. The programme
trains educators who will work in different regions of the country.
109 Working with and through the media
In a further attempt to educate health care professionals, the Local Action Group
used the focus group method to discuss coercive measures in treatment. Based on
the findings from this study, ODOS is bringing researchers and clinicians together
with individuals living with schizophrenia, relatives, mental health advocates, and
legal experts to assess the issue of coercion in psychiatric admission and treatment.
By examining those areas where consumers’ rights may have been violated, the
group will develop recommendations for reforming the process and avoiding the
negative therapeutic effects of the process itself.
Changing, not fighting, the system

In 2003, the Local Action Group undertook a 3-year pilot project entitled ‘Trans-
formation to an Integrated System of Mental Healthcare’ in partnership with the
Association for Mental Health Integra. Professionals from all 15 major Slovak
institutions working directly (and indirectly) with mental health are involved. The
Ministry of Health has assigned six advisors to the project – with the goal of cre-
ating a new system of care in the field of social medicine. The group is currently
preparing legislation for long-term care, thus integrating care for people with severe
mental disorders with general health and social care. In addition, the pilot project
objectives include establishing eight sites for sheltered living, ten sites for active
employment, thirty rehabilitation centres and a case management team.
In April 2003, a tea house was opened in the centre of Michalovce as one of
the first pilot sites for employment. In addition to empowering people living with
schizophrenia with economic opportunities, the tea house also provides oppor-
tunities for the public to interact with the consumers to overcome prejudices and
misconceptions, and potentially to develop a deeper social network.
A case management team was formed in March 2003. Since that time, they
have developed a programme to support people with schizophrenia to live in the
community. The team works in close cooperation with the health and social services
in the region and, together with the consumers, develops individual therapeutic
and rehabilitation plans.
Working with and through the media

If one axis of the programme has been to further empower individuals living with
schizophrenia and reduce self-stigma, the second axis is an effort to reach the
general public by working through the media. As mentioned earlier, Dr Nawka has
worked closely with the consumer organization Irrsinnig Menschlich from Leipzig,
Germany.
110 Slovakia
From July 2002 through May 2003, Irrsinnig Menschlich worked with the Club of
People with Schizophrenia in Slovakia and a local television station. Club members
from Slovakia and consumers from Leipzig received training in film-making,
learning narrative and technical skills to best communicate their stories.
The workshop was entitled ‘Against the Images in our Heads.’ Together the
group wrote, directed and produced the feature film, The Boss is the Patient and
debuted the film at the Second International Conference on Stigma and Discrimi-
nation because of Schizophrenia held in Kingston, Canada in October 2003. On 19
March 2004, the film aired on the European television channel, ARTE, as part of
an evening devoted to the subject of schizophrenia.
From the first meeting of the NGO, ODOS, the Local Action Group has
been working to develop an ongoing dialogue with the media. Media contact
lists prepared for journalists have led to interviews with individuals living with
schizophrenia, relatives, and health care professionals appearing in magazines and
newspapers, as well as on national and local television. A three-page article on
people living with schizophrenia appeared in Slovakia’s most popular weekly mag-
azine with a circulation of more than 100,000. The article included interviews with,
and photographs of, individuals living with the illness and their families.
The network of people living with schizophrenia, family members and men-
tal health professionals has been invaluable for ensuring stigma remains a topic
presented at professional conferences, schools, and the annual national meeting
of Slovak mental health users. Members of the Local Action Group were also
invited by the Slovak Humanitarian Council to speak with the president of the Slo-
vak Republic about stigma and other mental health issues. This meeting received
extensive coverage in the media and has helped publicize the national anti-stigma
movement.
ODOS established a local club in Michalovce for people living with schizophrenia
that focuses on educating the public and the media. Club members meet weekly
to discuss schizophrenia and stigma. They also receive training in public speaking
and some individuals now speak regularly to high school students about mental
health issues.
Conclusion
What is the tipping point of a programme? When can it move from a local initiative
in a city of 40,000 to a national campaign with an office in the country’s capital city?
Clearly the dedication of Pětr Nawka is one important element. But a programme
might just as likely become bogged down in local details if the lead organizer
becomes the lone spokesperson or face to the media.
111 References – Slovakia
Two elements have been essential in the national – indeed, international –

reach of the work in Slovakia: alliances and empowerment of those living with
schizophrenia. Political alliances have been formed through the Slovak League of
Mental Health and subsequently with the Slovak Humanitarian Council. Greater
empowerment has come through training programmes in public speaking and the
establishment of a special Club of People with Schizophrenia.
For more information on the Global Programme in Slovakia, please contact

• Pětr Nawka (Coordinator)
Psychiatric Hospital
A. Hrehovčika 1
SK-07101 Michalovce, Slovakia
Phone: (+42-15) 66431715
Fax: (+42-15) 66884822
E-mail: nawka@pnmi.sk
REFERENCES – SLOVAKIA
Nawka, P. and Reiss, C.M. (2002). Integrating people who are stigmatized: the tetralogue model.
World Psychiatry, 16(1), 1.
Nawka, P., Reiss, C.M. and Dolobac, L. (2002). The antistigma action programme in Slovakia: a
catalyst to integration. European Psychiatry, 17(0), 81.
12
Turkey
In 2003, a study of public attitudes in rural Turkey towards those living with
schizophrenia revealed that half of the 208 adults in a village near Manisa believe
that persons with schizophrenia are aggressive and should not be free in the com-
munity. Manisa is 30 km North-east of Izmir on the Aegean coast. An even greater
number said they would be irritated knowing that a neighbour had schizophrenia
(61.5%). A similar number (61.1%) said that they would not rent their home to
a person with schizophrenia and 85.6% said they would not marry someone with
schizophrenia.
At the same time this study was being conducted, Dr Alp Üçok, head of the
Local Action Group in Istanbul, was conducting another survey on the attitudes
of psychiatrists towards those diagnosed with schizophrenia. Questionnaires were
distributed to 100 members of the Schizophrenia Section of the Psychiatric Asso-
ciation of Turkey. Sixty psychiatrists (40 men and 20 women) from five cities
responded. Twenty-three of the respondents worked in a university hospital, 22
in a general state hospital and 15 in a psychiatric hospital. The mean age of
the psychiatrists was 37 and the mean duration of practice in psychiatry was
9.8 years.
While the sample size may at first seem small, it represents 5% of all psychiatrists
(including residents) in Turkey. World Health Organization (WHO) statistics
currently place the number of psychiatrists in Turkey at 1 per 100,000.1
Forty-two per cent of the psychiatrists surveyed responded that they never
informed patients of the diagnosis of schizophrenia. Roughly 17% said they always
informed patients and 40.7% said they did so on a case-by-case basis.
Among the most common reasons given was that patients and family members
could not understand the meaning of schizophrenia (32.6%). (This in contrast to
the study by Taskin et al., which found that respondents in the rural villages claim
to understand the term ‘schizophrenia’.) They also believed patients and/or family
members would drop out of treatment (28.3%) or become demoralized (13.5%) if
1 This compared to 16 per 100,000 in the US.

112
113 General practitioners
they learned the diagnosis. Slightly more than half (55.2%) expressed discomfort
when meeting a patient with schizophrenia at a social event.
Can an anti-stigma campaign succeed against such strong social stigma when
the psychiatric community itself holds such negative attitudes? A third study from
Turkey published in 2003, found that the attitudes of non-psychiatric physicians
towards the mentally ill were worse than those of the hospital staff in an university
hospital.
Building a programme and a non-governmental organization
Based on earlier examples of work at other World Psychiatric Association (WPA)

sites, in April and May 2000, Dr Üçok, conducted interviews with individuals
living with schizophrenia and family members as to the challenges of stigma and
discrimination they perceived. At the same time, a study was conducted to establish
whether the stigma related to mental disorders was specific to schizophrenia. The
group found stigma extended beyond schizophrenia.
Given the level of stigma in both the general public and medical community, the
Local Action Group knew the importance of bringing together different constituen-
cies to achieve the greatest reach. Working in close collaboration with the Psychi-
atric Association of Turkey and the Association of Family Physicians and General
Practitioners, the Local Action Group assisted in the creation of the first Non-
Governmental Organization (NGO) dedicated to mental health in Turkey – ‘Asso-
ciation of Friends for Schizophrenia’. The announcement of this group coincided
with the launch in January 2001 of the Open the Doors programme in Istanbul.
Two university clinics in Istanbul and Marmara leant their support to the pro-
gramme. At Istanbul’s Bilgi University, the Media Department agreed to provide
logistical support to help disseminate programme communications.
Efforts in 2001 focused on metropolitan Istanbul. The initial target audiences
chosen were general practitioners (GPs), medical students, school counsellors and
teachers, journalists, and the general public.
In 2002, these initiatives were broadened to the capital of Ankara, Izmir to the
southwest and Erzurum in Eastern Anatolia.
General practitioners
Given the relatively low number of psychiatrists per capita and the negative attitudes
uncovered by the research, the Local Action Group has focused much of its efforts
on general practitioners.
Copies of Volume II of the WPA materials, dealing with the latest scientific
information on schizophrenia and its treatment, were translated into Turkish and
114 Turkey
distributed to each medical centre in Istanbul. Information packets on early diag-

nosis were developed specifically for GPs. These kits included handouts of a slide
presentation, a chart for prodromal symptoms and a chart on daily doses of anti-
psychotics in maintenance of schizophrenia. Three hundred were distributed on
the European side of Istanbul and 200 were distributed to the Eastern, Asian
community.
During the initial phases of the programme, from 2001 to well into 2002, the
group held weekly meetings with GPs and family physicians. In 2003, a series of
four larger meetings were held in Istanbul and Ankara.
Each meeting began with a 45-min presentation on schizophrenia – symptoms
of the illness, the public health burden, the GP’s role in its diagnosis and treatment.
The presentation was followed by an interactive session using more case-related
questions. Participants are encouraged to provide insights and feedback for both
the presentation and on the anti-stigma programme.
Efforts continued with psychiatrists as well. The central theme of the Twelfth
National Congress on Social Psychiatry was ‘Stigma and Mental Health’. More than
10 panel discussions and conference presentations focused on the reasons for and
effect of stigma related to mental illness. Professor Julian Leff, chairman of the
Reintegration Committee of the WPA Global Programme, presented an overview
of the stigma related to schizophrenia around the world.
In April 2003, at the Spring Symposia of the Psychiatric Association of Turkey, the
Local Action Group organized a panel discussion entitled: ‘Stigma and Schizophre-
nia: What More Can We Be Doing?’ A consumer and a family member were among
the speakers at the symposium sharing their experiences with professionals.
Finally, interactive workshops on stigma have been prepared for sixth year med-
ical students. These workshops are presented to those in psychiatry rotations at
Marmara and Istanbul University. A course entitled: ‘The Attitudes of Society
and Doctors Toward Mental Illness’ has been part of the curriculum at Istanbul
Faculty of Medicine. Since 1999, more than 400 students have attended the course.
Working with the general public

Like the initiative underway in Poland, the Local Action Group in Turkey has
organized a public event to increase public awareness and build community among
people living with schizophrenia, family members and medical professionals. The
event, called Schizophrenia Walk, was begun in May 2001 in Istanbul. The fourth
Schizophrenia Walk was held on 18 September 2004.
Each year, the group has seen a significant increase in media coverage in mag-
azines, newspapers and on televisions. The most notable rise in media interest
came after a press conference held during the third annual event in 2003. Working
115 High school students and teachers
with the NGO, Association of Friends for Schizophrenia, the group distributed
information brochures as well as caps and keyholders imprinted with the logo and
motto of the family association.
One result of the media interest has been a pair of meetings held with jour-
nalists in October 2002 and April 2003. Members of the Association of Health
Reporters attended both meetings. At these meetings, a family member recounted
her experiences with stigma and professionals provided medical information on
schizophrenia and its treatment.
In early 2004, a media kit was developed for journalists. The group is also
supporting the dissemination of information on web sites of a consumer associ-
ation. The programme now has an official journal, entitled Kapıları Acin (Open
the Doors). It features information regarding on-going activities and contact
information.
A film by family members appeared on 10 television stations across Turkey. Six
other television programmes – specifically dealing with schizophrenia and the WPA
anti-stigma efforts – appeared in May and June 2001.
The Department of Communication of Bilgi University prepared 10 short video
clips – containing anti-stigma messages – which aired on national television stations
in late 2001. This media effort, in turn, generated more publicity on national radio
and television programmes.
Consumer and family members
The NGO, Association of Friends for Schizophrenia, was created in part to address
the need of individuals living with schizophrenia and family members for organized
support.
The group has helped assemble five informational booklets for individuals living
with schizophrenia and family members: ‘What is schizophrenia’, ‘Schizophrenia
and the Family’, ‘Legal Issues’, ‘Therapy’ and ‘Course of the Illness’. In addition to
distribution to family members, the brochure ‘What is Schizophrenia’ is used at
public meetings and events on stigma. Ten focus groups were conducted to explore
the needs of the caregivers in the period of 2001–2002 in Istanbul. A survey on the
level of stigmatization by the family members and caregivers is also underway.
High school students and teachers
In March 2002, the Local Action Group began an educational programme to teach-
ers and counsellors in high schools. Members of local action team reached about a
1000 students and 100 teachers in 2002. The following year, a study was completed
in two of the main high schools on the Anatolian side of Istanbul. Based on these
116 Turkey
results, the Local Action Group has developed a curriculum for use in high schools.
This programme was put into action in Izmir in 2004. Several meetings were held
in high schools: two of these high schools are being evaluated for the outcomes
in developing curricula to improve knowledge and attitudes about schizophrenia.
Recommendations for this curriculum accompanied a report to the Ministry of
Education, evaluating health and psychology class materials.
Conclusion
Both the interventions in high schools and general health care setting were encour-
aged and faced little opposition. Today, anti-stigma education modules are part of
internship training in both Istanbul and Marmara Medical Schools.
When asked to cite the major accomplishment of the programme to date,
Dr Üçok discusses the way in which ‘psychiatrists and other mental health pro-
fessionals have become part of the health promotion activities in different regions
(Erzurum, Ankara, Urfa, and Izmir). And as a result several studies and research
proposals are now focusing specifically on stigmatization because of schizophrenia’.
He also sees a strong, on-going exchange between the Local Action Group and the
association, Friends for Schizophrenia. Working together, they continue to broaden
the reach of the programme and its message to politicians and the general public.
For more information on the Global Programme in Turkey, please contact:

• Alp Üçok (Coordinator)
Department of Psychiatry, Istanbul Medical Faculty
Millet street, 34390 Çapa, Istanbul , Turkey
Phone: (+49-212) 4142000 31328
E-mail: alpucok@superonline.com
BIBLIOGRAPHY – TURKEY
Aydin, N., Yigit, A., Inandi, T. and Kirpinar, I. (2003). Attitudes of hospital staff toward mentally
ill patients in a teaching hospital, Turkey. International Journal of Social Psychiatry, 49(1),
17–26.
Project Atlas: Country Profile: Turkey. (2002). World Health Organization.
Taskin, E.O., Sen, F.S., Aydemir, O., Demet, M.M., Ozmen, E. and Icelli, I. (2003). Public
attitudes to schizophrenia in rural Turkey. Social Psychiatry and Psychiatric Epidemiology,
38(10), 586–592.
Üçok, A., Polat, A., Sartorius, N., Erkoc, S. and Atakli, C. (2004). Attitudes of psychiatrists toward
patients with schizophrenia. Psychiatry and Clinical Neurosciences, 58(1), 89–91.
13
Brazil
I want to be bigger than I am now

Maybe with a glimpse of the world gone by
I want to study very, very, very much
And learn more every time
And more: learn with life and other people
And more: live freely
Always be me as well as being somebody
And, when I fall, be able to get up
The poem above was written by Arlindo da Cunha Campello. Entitled ‘My ego
and the desire’, it is based on a poem by Ricardo Reis and was written as part of a
Writing Workshop in 2002 as one of the many activities of the Local Action Group’s
efforts in Brazil.
Establishing the programme
The number of individuals living with schizophrenia in Brazil is estimated at

roughly 1.7 million. From 1984 to 1996, the health care system reduced the number
of psychiatric beds by 36%. Unfortunately, the development of community-based
services, while gradually improving, are grossly underfunded. Most health care
services for the mentally ill are provided by the private sector.
The majority of Brazilians have poor access to health care and those who do
report a poor quality of care. The human rights of the mentally ill, as well as the
under-diagnosis of mental illnesses have yet to be adequately addressed by public
health policies and services.
According to Dr Cecília Villares, programme coordinator of the Local Action
Group in Brazil: ‘For many, prejudice and discrimination constitute an everyday
experience. Among the difficulties and obstacles faced, lack of adequate treat-
ment settings, lack of education, poor access to information and lack of legal and
117
118 Brazil
social support are some of the major issues related to stigma and discrimination
experienced by people diagnosed with schizophrenia and their caregivers’.
In 2000, the WPA Steering Committee began conversations with the Brazilian
Psychiatric Association and its then President, Professor Miguel Jorge, regarding
the start of an anti-stigma effort in his country. In early 2001, a planning group met
in São Paulo to discuss preliminary steps for the development of the programme.
The planning group agreed to form two executive committees: the Coordinating
Committee and the Local Action Group. The Local Action Group was comprised
of nine members that included mental health professionals and a journalist. Each
member of the Local Action Group was responsible for helping to coordinate
specific interventions.
Targeting two communities
Estimates place the population of the Greater São Paulo metro area at 20 million
people, making it the most populous city in the Southern Hemisphere. To imple-
ment a programme in an urban centre with the population greater than the country
of Chile, the Local Action Group directed its efforts to two communities.
First, the Psychiatric Department of São Paulo Federal University
(UNIFESP) already had an established Schizophrenia Programme made up of
patients, family members and professionals. The group known as Programa de
Esquizofrenia (PROESQ) provides outpatient services within the hospital and
has become a centre for graduate and post-graduate training and research on
schizophrenia.
Patients from every region of the city as well as outlying districts utilize these
services due to their comparatively high quality of care and the multidisciplinary
nature of care. The established strengths of PROESQ and its proximity to the
University community of students, professors and employees made it an ideal
incubator for generating community action and actively involving those living
with schizophrenia and their family members.
Second, the UNIFESP also runs the psychiatric services at Pirajussara Hospital, a
200-bed hospital with ten psychiatric beds, a day hospital and outpatient services.
The community of the Pirajussara Region within the São Paulo metropolitan region
is made up of two neighbouring urban centres, Embú (population: 207,000) and
Taboão (population: 198,000). Both areas have a high density of lower income
families and served as models for other urban settings in Brazil. A community
centre was scheduled to be opened in Pirajussara in 2002 and the group felt
that successful interventions in this community could be replicated in other areas
nationwide.
119 Objectives, target audiences and research
Objectives, target audiences and research
The Local Action Group established four key strategies:

1 foster the empowerment of those living with schizophrenia and their family
members;
2 include representatives from target groups to help build teams, design strategies
for action, and then implement the interventions;
3 work in cooperation with other organizations and institutions to help build a
coalition around mental health issues;
4 stimulate volunteer collaboration and collective work.
The Group then developed a series of objectives to address these strategies:
• Develop informational materials and communication programmes.
• Establish the Brazilian Schizophrenia Association (ABRE – Associação Brasileira
de familiares, amigos e portadores de Esquizofrenia), the first support group
dedicated to those living with schizophrenia, their families and caregivers.
• Promote educational meetings and workshops for those living with schizophre-
nia, their families and caregivers, as well as mental health professionals and
religious leaders.
• Support cultural projects aimed at combating prejudice and discrimination
and facilitating social inclusion of persons with schizophrenia, to help foster
creativity and communication skills.
• Create a research group and stimulate investigation projects in the field of stigma
and schizophrenia.
As part of the first objective, a Communications Strategy Group was created
involving mental health professionals, patients and their families, and commu-
nication consultants. Together the team created a name for the Brazilian Project
(Projeto S.O.eSq) and a logo.
The Local Action Group chose the following target groups for their interven-
tions: patients and family members, journalists and the media, mental health
professionals and religious leaders and their communities. Representatives from
each of these groups were invited to join members of the Local Action Group in
helping to shape and implement interventions. By 2003, S.O.eSq involved 30 active
volunteer collaborators.
In 2003, under the direction of Professor Miguel Jorge, a research team from
UNIFESP translated and adapted research tools used by other Local Action Groups
involved in the global anti-stigma programme, including Canada. The group then
began preparing research protocols to cover a number of areas:
• surveys of the general public, health professionals, religious leaders and
educators, regarding their knowledge and attitudes;
120 Brazil
• content analyses of newspaper and magazine articles on schizophrenia and

stigma;
• focus groups with patients and their families on issues of self-stigma and quality
of life;
• overall evaluation of the educational activities and communication strategies
within the Brazilian Project.
Educational initiatives
Throughout 2002, a team of mental health professionals, individuals living with
schizophrenia and family members met and developed content for a series of edu-
cational meetings. These included a 12-week educational programme for families
and caregivers, which included 15 participants. A larger, open Educational Meet-
ing involved roughly 250 people – those living with schizophrenia, their family
members, caregivers and representatives from the clergy.
Partial results from the 222 evaluation forms completed at three educational
meetings of these groups showed that:
• 63% reported a significant increase in knowledge;
• 33% reported an increase in knowledge;
• 1% reported no change in knowledge.
In terms of self-reported attitude change:
• 86% reported a more positive attitude;
• 14% reported no attitude change;
• And no one reported a negative change in attitudes.
With the successful establishment of ABRE, the team began implementing
educational/support meetings for families and caregivers twice a month starting in
March 2003. These meetings and presentations continue to this day.
A Communications Team developed an informational folder and Treatment
Resources Directory for patients and relatives, as well as a shorter informational
pamphlet that could be used with the general public. The group also developed the
S.O.eSq web site, www.soesq.org.br, and a booklet for journalists.
Another on-going informational tool targeted to mental health professionals
is the ‘S.O.eSq Corner’, a regular column in the Brazilian Psychiatric Association
Quarterly Bulletin (Psiquiatria Hoje).
Building a coalition
In September 2002, S.O.eSq brought five non-governmental organizations (NGOs)

together to meet and discuss the building of a Coalition Movement for Mental
121 Conclusion
Health in Brazil. The groups began meeting on a monthly basis and continues
to build strategies for improving the awareness of mental health issues in both
the larger health care community and government. The group was also able to
extend its working partnership with UNIFESP to include the Human Resource and
Training Center at the State Health Department (CEDRHU).
With financial support from Eli Lilly Brasil and the Brazilian Psychiatric
Association, S.O.eSq established an office, staffed by volunteers, in São Paulo.
Cultural activities
In 2001, the Local Action Group initiated the ‘Book Project’ designed to com-
pile stories from those living with schizophrenia, their families and mental health
professionals. Authors described the onset, crisis and diagnosis, treatment and
recovery from their own perspective. Targeted to the general public, the book is
designed to inform and describe pathways for assistance and support.
In 2002, Dr Cecilia Villares, Rita Narciso Kawamata and Luiz Ribeiro a Brazilian
journalist, established the S.O.eSq Writing Workshop to help potential contributors
to the Book Project develop their writing skills. The coordinators brought in a vari-
ety of different texts, including poems (from authors, such as Carlos Drummond
de Andrade, Manoel de Barros and Fernando Pessoa), memoirs (from Fernando
Sabino), folklore (Patativa do Assaré) and more informational articles about
schizophrenia. Song lyrics, short stories and Japanese haikus were also presented.
Workshops were held between February and November of 2002 with patients
and family members. Workshops typically began with distribution of a photocopy
of the text. The participants first read the text in silence. Then, the text would be
read out loud by all participants. Following that reading, the coordinators posed
questions and encouraged open conversation about their interpretations of the
text. Insights from this discussion were then applied to the final step during which
each participant writing his or her own piece. Some workshops dealt with special
topics, such as the movie A Beautiful Mind.
In May 2003, members of the workshop extended their exercises to meet, discuss
and develop a movie screenplay. These and other workshop participants have
spoken of the positive effect the writing exercises have had on reducing self-stigma
and giving them a greater feeling of empowerment in their day-to-day life.
Conclusion
The efforts in São Paulo have yet to be fully analyzed though some research has
been published. What is clear, however, is that the Local Action Group has:
(a) built upon and extended an existing infrastructure through UNIFESP;
122 Brazil
(b) applied the talents and skills of its volunteers in shaping anti-stigma initiatives,
such as the Book Project and Writing Workshop.
The ABRE support group has grown in membership to 125 and it continues to
establish new partnerships with other family associations and NGOs. Working in
partnership with Familiae, a family therapy institute in São Paulo, the groups have
developed an 8-week workshop which involves mental health professionals, those
living with mental illness and their family members.
For more information on the Partnership Programme in Brazil, please contact

• Cecília Villares (Coordinator)
UNIFESP
Departamento de Psiquiatria
R. Botucatu, 740-3o andar
São Paulo – SP
04023-900 Brazil
Phone/Fax: (+55-11) 5081 3502
E-mail: cvillares@psiquiatria.epm.br
• Miguel Roberto Jorge (Advisor)
UNIFESP
Clinical Psychiatry Section
Rua Antonio Felicio, 85
Sao Paulo – SP
04530-060 Brazil
Phone: (+55-11) 3079 0262
Fax: (+55-11) 3079 9232
E-mail: migueljorge@psiquiatria.epm.br
BIBLIOGRAPHY – BRAZIL
Ludermir, A.B. and Harpham, T. (1998). Urbanization and mental health in Brazil: social and
economic dimensions. Health & Place, 4(3), 223–232.
Moreira, M.S., Crippa, J.A. and Zuardi, A.W. (2002). [Social performance expectations in psychi-
atric patients of a general hospital ward.] [Portuguese] Expectativa de desempenho social de
pacientes psiquiatricos internados em hospital geral. Revista de Saude Publica, 36(6), 734–742.
Villares, C.C. and Sartorius, N. (2003). Challenging the stigma of schizophrenia. Revista Brasileira
de Psiquiatria, 25(1), 1–2.
14
Egypt
According to the World Health Organization (WHO), in 1999, the population of

Egypt was roughly 60,000,000. Of the 120,000 doctors, only 500 (0.4%) of these
were psychiatrists (including those in training). Less than one in ten hospital beds
in Egypt are reserved for psychiatric patients with roughly one bed for every 7000
Egyptians.
The World Psychiatric Association (WPA) anti-stigma initiative undertaken in
Egypt was first organized in Ismailia, located on Lake Timsah, midway between
Port Said and Suez, east of Cairo. The Governate consists of five cities – Ismailia,
Fayed, Al-Tal, Al-Kabeer, west Qantara and east Qantara. Roughly 700,000 people
live in the urban and rural areas of the governate.
One of the first research projects undertaken by the Local Action Group was
an assessment of the understanding of the word ‘fusam’. Although sometimes
the word ‘schizophrenia’ is written in Arabic, Al-Fusam is the term most com-
monly associated with the illness described in Diagnostic and Statistical Manual for
Metal Disorders (DSM) IV and International Classification of Diseases (ICD)-10
as schizophrenia, and is commonly used in textbooks and the mass media.
The first programme coordinator was Dr M. Hassib El-Defrawi working with
colleagues in the Neuropsychiatry Department in Ismailia. The group coordinated
efforts with the local consumer organization, the local branch of the Rotary Club,
and the Association for Health and Environmental Development (AHED).
Research
Much of the early work in Egypt was conducted to assess the knowledge and
attitudes of a wide range of groups. Focus groups and small-scale surveys were
conducted with: individuals living with schizophrenia and family members, com-
munity leaders, primary health care physicians, family physicians, mental health
care workers, undergraduate medical students, nurses, psychiatrists, social work-
ers, students and teachers, media personnel, and religious leaders and clergy (both
Muslim and Christian).
123
124 Egypt
Primary care physicians
In five rural and urban health care centres in Ismailia, 56 primary care phys-
icians were surveyed regarding their knowledge and attitudes regarding psychiatric
medication. While 73% of the general practitioners (GPs) surveyed considered
anti-psychotic drugs to be the best method for treating severe mental illness, 64%
reported fear that patients might become dependent on these drugs. A full 77%
avoid prescribing these medications.
Individuals living with schizophrenia and family members
Two hundred individuals diagnosed with schizophrenia and their families were
interviewed. They reported neighbours and the community in general as stigma-
tizing. Even among family members – while 87.5% expressed support – 62.5% said
they would not marry someone with mental illness. Seventy-five per cent of family
members believed anti-psychotic medication led to addiction.
A similar proportion (77.5%) reported having made use of traditional treat-
ment methods. For 59%, these non-psychiatric methods were the first attempt at
treatment. Among the cultural and traditional interventions reported were: use of
the Qur’an (82.7%); herbs and plants (25.8%); Hegab (the practice of writing on
pieces of paper; 20.7%) and dietary restrictions (15.5%). Nearly one-third (31%)
reported using cautery with hot iron.
Journalists
Focus group discussions with 49 people working in local media found 79.6%
would refuse to marry someone with schizophrenia. Seventy-three per cent said
they would probably be afraid to speak to them; while 55% said they would not
offer them a job.
Interventions
To provide people living with schizophrenia and family members with the latest
information on the diagnosis, management and treatment of the illness, a ‘Patients
and Family Guide’ was created. The brochure also addressed relapse prevention. A
booklet entitled ‘Dignity of Patients with Schizophrenia in the Bible’ was created
for, and distributed to, Christian clergy. A companion volume, ‘Dignity of Patients
with Schizophrenia in Islam and Qur’an’ was developed for Muslim clergy.
The group also held seminars with key religious leaders and clergy. Members of
the media were invited to these seminars which resulted in coverage in the Egyptian
print media and on radio and television.
125 Broadening the programme
Working with medical students
Another unique aspect of the Local Action Group efforts in Ismailia is its reliance
upon the involvement of medical students in anti-stigma research and interven-
tions. These medical students participated in a survey of a group of Bedouins,
carried out in 2001. Researchers found that 89% did not recognize the term
Al-Fusam, used for schizophrenia and 66.6% refused to work with a person known
to have a mental disorder.
Students have assisted in developing educational materials, such as videos,
brochures, posters and a web site in Arabic. The active involvement of med-
ical students with individuals living with schizophrenia and family members was
useful because it:
(a) helped a programme with limited resources that relied upon voluntary
contributions;
(b) also reduced fear and stigma of the medical students.
In Ismailia, medical students are encouraged to participate in a 2-week health
education project, Schizophrenia Awareness and Reducing Stigma, in local sec-
ondary schools. Research still needs to be conducted as to the long-term impact of
these efforts.
Secondary school students
In 2000, the Local Action Group in Egypt launched three mental health ini-
tiatives to secondary school students in Ismailia and surrounding regions. This
educational effort, promoting schizophrenia awareness, reached more than 3000
students, roughly 25% of all those enrolled in grades 10 and 11.
Using research instruments similar to those used in Canada, post-test results
showed a remarkable increase in knowledge about schizophrenia from 31% to
84%. Knowledge of treatment options rose from 32% to 69%. In the post-test
analysis, students who considered people with schizophrenia dangerous dropped
from 81% to 26%.
Broadening the programme

In 2001, under the guidance of Dr Ahmed Okasha, then president-elect of the
WPA, the programme was expanded to include the Ministry of Health, Office of
Mental Health. Hussein Fahmy, a popular Arab actor, participated with Dr Okasha
in a high-profile media event entitled: ‘The Role of Mass Media in Elimination of
the Stigma of Mental Illness’.
126 Egypt
The departure of the director of the Local Action Group in 2001 caused a sig-
nificant disruption in the anti-stigma efforts. This is one example of why the WPA
Global Programme recommends a leadership structure for Local Action Groups
that are not solely reliant upon a single individual for internal organization and
external relationships (to professionals and organizations).
Through the efforts of Dr Tarek Okasha, the programme continues to broaden
its reach.
For more information on the Global Programme in Egypt, please contact

• Tarek Okasha (Coordinator)
Institute of Psychiatry, Faculty of Medicine, Ain Shams University,
3, Shawarby Street, Kasr El Nil
Cairo, Egypt
Phone: (+20-2) 336 6799/335 0233
Fax: (+20-2) 748 1786
E-mail: tokasha@internetegypt.com
• Ahmed Okasha (Advisor)
Institute of Psychiatry, Ain Shams University
3, Shawarby Street, Kasr-el-Nil
Cairo, Egypt
Phone: (+20-2) 336 6799/335 0605
Fax: (+20-2) 748 1786
E-mail: aokasha@internetegypt.com
BIBLIOGRAPHY – EGYPT
El-Shatury, M.H., Ghada, S., Eldin, A.H., Abdelimoneum Maram, M., Radwan, M.A., Elabban
Monira, T., Ismail, M.M., Ellabban Nahla, H., Kebeer, A.A., Abdalla and Hassib El-Defrawi, M.
(1999). Knowledge and attitude of Bedouins of Saint Catterine towards mental disorders. The
Egyptian Journal of Psychiatry, 22(2), 287–294.
Okasha, A. (1995). Settings for learning: the community beyond. Medical Education,
29(Suppl. 1), 112–115.
Okasha, A. (1997). The future of medical education and teaching: a psychiatric perspective.
American Journal of Psychiatry, 154(Suppl. 6), 77–85.
Okasha, A. (1999a). Comments on teaching psychiatry to undergraduates. Israel Journal of
Psychiatry & Related Sciences, 36(4), 293–296.
Okasha, A. (1999b). Mental health in the Middle East: an Egyptian perspective. Clinical
Psychology Review, 19(8), 917–933.
127 Bibliography – Egypt
Okasha, A. (1999c). Mental health services in the Arab world. Eastern Mediterranean Health
Journal, 5(2), 223–230 [erratum appears in Eastern Mediterranean Health Journal 2000, 5(5),
1059].
Okasha, A. (2001). Egyptian contribution to the concept of mental health. Eastern Mediterranean
Health Journal, 7(3), 377–380.
Okasha, A. (2003). Psychiatric research in an international perspective. The role of WPA. Acta
15
Morocco
At the Northwestern corner of the African continent, Morocco, half the size of
Egypt (446,500 km2 ) is home to roughly 30,000,000 people. Ninety-eight per cent
of the population is Muslim. Fifty-three per cent live in urban centres. However,
the country has just 300 psychiatrists working in academic, as well as private and
public hospitals.
To implement an anti-stigma programme in a country where psychiatric
services are so heavily burdened, the World Psychiatric Association (WPA) Advisor,
Dr Driss Moussaoui, and Local Action Group Coordinator, Dr Nadia Kadri,
enlisted the services of a variety of different professionals, including a mem-
ber of Parliament, a key representative from the Moroccan Ministry of Health,
a psychologist, psychiatric nurses, and representatives from non-governmental
organizations (NGOs) such as Chourouq (a family support group for relatives of
those living with mental illness) and Nassim (a group dedicated to prevention of
substance abuse).
In December 2000, the group established itself as a national programme, called
IDMAJ. Both the medical media and pharmaceutical industry have provided
support for the initiative in the last 4 years.
Research
As with the work in Egypt, IDMAJ sought to establish a baseline of knowledge

and attitudes regarding schizophrenia, and the use of the Arabic term ‘Al-Fusam’.
Results in Morocco mirror those in Egypt.
Family members and individuals living with schizophrenia
As in other developing countries, research in Morocco has indicated significant

involvement of the family in the lives of patients. One hundred individuals with
schizophrenia were interviewed at outpatient clinics at the University Psychiatric
Center and Berrechid Hospital in Casablanca. Three of four (75%) reported that
128
129 Interventions
they had been hospitalized three times or more. A majority reported having lost jobs
and friends. Of the 100, 95 reported that they lived with their families throughout
the duration of the illness (more than 10 years).
Three of four family members (76%) knew nothing about the diagnosis of
‘schizophrenia’ or its Arabic counterpart ‘Al-Fusam’. Half (53.1%), however,
reported that the illness of their family members was organic or due to brain
disease. Many reported that they would not let their family members leave the
community or hold a job. Like family members in Egypt, Moroccans reported that
neighbours were often the most stigmatizing and difficult to deal with.
Medical professionals
In the survey of 100 general practitioners regarding their knowledge of schizophre-

nia and attitudes towards those living with the illness 89% reported that they were
consulted by mentally ill patients. Two per cent said they refused to consult with
patients who were mentally ill. This number rose to 35% when a patient was agi-
tated. One-half required the presence of another person in the room during the
consultation.
While a number reported having a family member with schizophrenia (e.g. 11%
reported a parent), this had a negative impact on their attitudes towards others
with the same illness. Although all reported learning of the illness through their
studies, this awareness appeared to provide no protector effect.
Ninety-nine per cent said they would not allow their child to marry a person with
schizophrenia (56.2% said that it would cause a ‘bad life’). Six per cent reported a
fear of having a grandchild with the illness to the shame associated with it.
Interventions
Based on these results, the members of IDMAJ reasoned that information alone
would not be sufficient to fight the stigma associated with schizophrenia. One of
the first interventions was the creation of weekly meetings with patients in in-
patient settings in hospitals to explore the topic of stigma and how best to fight it.
The groups explore coping strategies for both patients and family members.
In 2002/2003, focus groups were conducted at the Ibn Rushd University
Center in Casablanca to explore the first-hand experiences of stigma and its effects
on prognosis of the illness. The focus groups revealed three dimensions of the
stigma:
• The image of the illness itself. For example, ‘aggressiveness’ and ‘dangerousness’
were traits often associated with schizophrenia.
130 Morocco
• The stigma of interpersonal interactions. For example, the ‘social isolation’

reported by both those living with the illness and family members.
• Structural discrimination. For example, those living with schizophrenia reported
lack of rehabilitation systems as being the greatest form of structural
discrimination. Family members rated the quality of the available care as of
primary concern.
From this data, IDMAJ concluded that it must first educate individuals living
with schizophrenia and family members about the illness, about available treat-
ment regimens and about ways to improve the quality of life of those living with
schizophrenia. Part of this effort includes social activism. IDMAJ has written to the
Chairman of the Moroccan Parliament concerning the availability of medications,
the rights of the mentally ill, and their treatment by police and officials in the penal
system.
IDMAJ also works in close collaboration with two family associations specifically
focused on schizophrenia. Together the groups sponsor a seminar on the stigma
associated with schizophrenia.
In December 2001, the ‘Lingue Casablancaise pour la santé Mentale’, a meeting
on mental health in Morocco was held for the twenty-third year. The subject of
that year’s meeting was ‘NO to discrimination against people with schizophrenia’.
Five hundred people attended, including: mental health professionals, people living
with schizophrenia family members and representatives from associations as well
as members of the general public. Many family members spoke publicly for the
first time about the suffering caused by the stigma and discrimination because of
schizophrenia.
Since that meeting, efforts in Morocco have been expanded to include Marrakesh
and Rabat. A 90-min television programme was broadcast on the main network of
Moroccan television. The programme included participation of family members
who have shared their experiences publicly, as well as more general information on
mental health, mental illness and its associated stigma.
In 2002 and 2003, the Local Action Group also conducted a study of written
media for the general public. They analysed three daily newspapers – two of them in
French (Le Matin and L’Opinion) and one in Arabic (Assabah). They also analysed
two weekly newspapers (Gazette du Maroc and Aujourd’hui le Maroc) and two
magazines (Femme du Maroc and Tel Quel).
Of the 11,600 articles analysed, only 56 (less than half of one per cent, 0.48%)
discussed mental illness or mental health, and 14 of these (0.12%) described those
with mental illness as being aggressive and unpredictable.
131 Conclusion
On-going focus on medical professionals
Recognizing the strong stigma that exists in the medical profession, IDMAJ has also
developed a series of interventions including a journal article that has appeared
in Esperance Medicale, a journal for general practitioners. Other journal articles
on the work conducted in Morocco have appeared in the international journals
Acta Psychiatrica Scandinavica, the Canadian Journal of Psychiatry, as well as Social
Psychiatry and Epidemiological Psychiatry.
To expand the dissemination of the anti-stigma message beyond the pages of
professionals journals, IDMAJ hosts an on-line Forum Discussion at the web site
of the Maghrebian Journal of Psychiatry. The group has also sought involvement
from other associations providing support and services for the mentally ill (e.g.
ambulatory mental health care).
Conclusion
Both of the examples from Africa point to the importance of further educa-
tion to the medical community. At the same time, support networks need to
be strengthened for individuals living with schizophrenia and family members,
given the current burden on psychiatric services in these countries. Clearly stigma
and discrimination are placing pressure on families where the understanding of
schizophrenia, its course and treatment is limited.
For more information on the Global Programme in Morocco, please contact

• Nadia Kadri (Coordinator)
Centre Psychiatrique Universitaire Ibn Rushd
Rue Tarik Ibn Ziad
Casablanca, Morocco
Phone/Fax: (+212-2) 220 6867
E-mail: n.kadri@casanet.net.ma
• Driss Moussaoui (Advisor)
Centre Psychiatrique Universitaire Ibn Rushd
Rue Tarik Ibn Ziad
Casablanca, Morocco
Phone: (+212-2) 220 4102/222 8719
Fax: (+212-2) 296 5125
E-mail: psych@casanet.net.ma
132 Morocco
BIBLIOGRAPHY – MOROCCO
Green, C.A., Fenn, D.S., Moussaoui, D., Kadri, N. and Hoffman, W.F. (2001). Quality
of life in treated and never-treated schizophrenic patients. Acta Psychiatrica Scandinavica,
103(2), 131–142.
Moussaoui, D. (2000). What do we gain from collaboration between developing and indus-
trialized countries? Seishin Shinkeigaku Zasshi – Psychiatria et Neurologia Japonica, 102(12),
1209–1216.
16
United Kingdom
As the World Psychiatric Association (WPA) Programme continued to establish

new Local Action Groups in new countries in 1998, Professors Graham Thornicroft,
Peter Huxley and Vanessa Pinfold of the Institute of Psychiatry were in conversa-
tions with the National Schizophrenia Fellowship in the UK (since that time, the
National Schizophrenia Fellowship has been renamed Rethink Mental Illness). Dr
Pinfold describes the challenges faced with anti-stigma efforts in her country:
In the UK, there are many initiatives to fight stigma and discrimination because of mental illness –
both at a national level through government mental health promotion campaigns and voluntary
sector groups, and at a local level, using targeted programmes. Very few of these initiatives, how-
ever, are ever thoroughly evaluated. The WPA Programme in the UK, based firstly in West Kent
sought to develop and evaluate educational anti-stigma interventions with several target groups.
The WPA Global Programme offered a framework to investigate the challenges

of fighting stigma and discrimination, while operating in dialogue and comparing
results with other members of the global effort. To systematically assess their
own effort, the coordinators of the Local Action Group established a three-phase
approach.
The first phase, scheduled for August 2000 to January 2002, was to introduce a
targeted campaign in West Kent. Based on successful results of that intervention,
the programme would be expanded to four other sites in the UK with an evaluation
of results in August 2003. Given the results of that phase, the Local Action Group
would then seek additional funding to broaden the campaign still further.
A programme Steering Committee was formed and included: politicians, jour-
nalists, academicians, individuals living with schizophrenia, family members,
mental health promotion experts and representatives of Rethink. They called the
initiative: Mental Health Awareness in Action.
Phase One
West Kent is a county in Southeast England. Three target groups were selected from
the community of 1,329,652 (2001 census):
• secondary school students averaging 14 years of age;
133
134 United Kingdom
• police officers;
• other groups including Citizen Advice Bureau volunteers, school nurses and
Local Borough Council staff.
The Local Action Group worked in partnership with Maidstone Mental Health
Awareness Group, Sevenoaks and Area Mental Health Awareness Group, and the
local chapter of Rethink Severe Mental Illness. A systematic training programme
was developed and presented to 600 secondary school students and 200 police
officers.
Before training was undertaken, however, focus group research was conducted
to establish a set of core messages for the systematic training. These core messages
were:
• People do recover from mental health problems.
• We all have mental health needs.
• One in four people in a lifetime will seek help for a mental health problem.
• Schizophrenia is not a split personality.
• Anyone can be violent – violence is not a symptom of mental illness.
• Mental health problems differ from learning difficulties.
The programmes were evaluated using pre- and post-test survey questionnaires as
well as subjective evaluation forms.
Implementing workshops with police officers
Police workshops were designed to provide officers with the skills and confidence
necessary to support people with mental health problems who are in distress.
Using case studies, participants discussed how to handle particular incidents. Once
exercise simulated the experience of ‘hearing voices’.
Individuals living with schizophrenia and family members spoke to officers
about how the police helped them. They described how the police can be viewed
by people with mental illness and what they can do in addition to help people with
mental health problems in a variety of situations.
Implementing workshops in schools

The approach taken with students in schools differed from that undertaken with
police officers. One of the key goals was to make mental health and mental illness
part of the school curriculum, to make it as important in classes as sex and rela-
tionships, physical exercise and nutrition, life skills, and drug and alcohol lessons.
These carefully planned educational sessions discussed what mental illnesses are
rather than what people suppose them to be. Students are asked to reflect upon the
language used to stereotype people with mental illness problems.
135 Findings and recommendations
Students were given a variety of informational resources and encouraged to seek

help from friends or family members, schoolteachers or school nurses, or general
practitioners if they are experiencing symptoms. The students also watched an
informational video. After the video, consumers answered students’ questions often
in lively exchanges.
Findings and recommendations

The results of these educational initiatives have been published in the British Journal
of Psychiatry and Social Psychiatry and Psychiatric Epidemiology. More detailed
findings of the anti-stigma initiative can be found in these articles. A report entitled
‘How Can We Make Mental Health Education Work? Examples of a Successful
Local Mental Health Programme Challenging Stigma and Discrimination’ is also
available. For a copy of the report, contact v.pinfold@iop.kcl.ac.uk
Overall the findings from the initiative in West Kent included:
• Educational workshops can have a small but positive impact on peoples’ attitudes
towards people with mental health problems.
• Women are more receptive than men to the educational workshops – in both
the police and young persons samples.
• Improvements in knowledge about mental illness are weakened over time but
the impact of hearing personal experiences are reported to be longer lasting.
• People with personal experiences of mental illness hold more positive views than
those without personal experiences – through family, friends or work colleagues.
• Young people who have personal experiences learn more from the workshops
than those that report no personal connection with the topic of mental illness.
Based on these findings, the Local Action Group recommended:
• Mental Health Awareness Groups should develop specific aims and objectives,
and ensure that all participants are in agreement over the direction and aims of
the project.
• Mental Health Awareness Groups should think carefully about the approach
they are taking to counter stigma and discrimination, and adopt a framework
that reflects their aims and objectives – medical model, disability rights model,
recovery model or individual growth model.
• People with mental health problems should be involved in the planning and
delivery of mental health awareness workshops – and some programmes will be
user-led initiatives.
• The intervention programme should be developed in partnership with stake-
holders from the target audience.
136 United Kingdom
• Principles of educational learning theory should be adopted when planning the

educational sessions, for example, interactive strategies requiring active learning.
• Long-term sustainability of programmes must be addressed in planning any
project.
Phase Two
Having assessed the efforts in West Kent, the Local Action Group then approached
Mental Health Awareness Groups in Southern England and extended an offer to
implement the educational programmes with their target audiences.
One of the goals of Phase Two was to develop new evaluation tools to assess
changes in attitudes, knowledge and behaviour. Another goal was to assess the
impact of programmes undertaken by other groups. To date, work has been com-
pleted on programmes with the Citizens Advice Bureau, Housing Association and
tutors in a London College.
As part of the on-going effort to assess the most effective anti-stigma inter-
ventions, the Local Action Group organized a national UK stigma conference on
26 June 2003 in Birmingham, England. The conference was entitled: ‘Reducing
Psychiatric Stigma and Discrimination: What Works?’ and showcased best prac-
tice examples of anti-discrimination projects in mental health. People living with
schizophrenia and family members, policy makers, researchers and professionals
working in the field of mental health gathered to share examples of current best
practice.
Finalization of Phase Two and implementation of Phase Three were sched-
uled for 2004. As of this writing the group continues to seek funding to carry
on its efforts to evaluate the effectiveness of anti-stigma initiatives. Working with
Rethink and a consumer-led project based at mental health media, the Local Action
Group continues to develop proposals, pursue grants, and work in partnership with
other European initiatives to develop tools and methodologies for more effective
interventions.
Conclusion
In the UK, anti-discrimination campaigns, such as the one sponsored by the
National Institute for Mental Health in England (www.mindout.net) and the Royal
College of Psychiatrists (www.changingminds.co.uk) had already been established
when the WPA programme began. A national policy framework was already in
place, requiring all health and social care agencies to strategically promote men-
tal health for all. This same policy directly calls upon these agencies to combat
137 Bibliography – United Kingdom
psychiatric stigma and discrimination across a range of community settings with

at risk and vulnerable groups.
Yet prior to efforts by Mental Health Awareness in Action – and other research-
based initiatives – assessment results were often unavailable. In some cases, funds
may have covered anti-stigma communications but not the research to measure
their effectiveness.
In West Kent, the group initiated educational programmes which have provided
clear results, and more important, recommendations for moving forward in the
future.
For more information on the Partnership Programme in the United Kingdom,

please contact
• Vanessa Pinfold (Coordinator)
Health Services Research Department, Institute of Psychiatry
P.O. Box 29
De Crespigny Park, Denmark Hill
London SE5 8AF, UK
Phone: (+44-0) 20 7848 0457
Fax: (+44-0) 7277 1462
E-mail: v.pinfold@iop.kcl.ac.uk
• Graham Thornicroft (Advisor)
Head, Health Services Research Department
Section of Community Psychiatry (PRiSM)
Institute of Psychiatry at The Maudsley
De Crespigny Park
London SE5 8AF, UK
Phone: (+44-0) 20 7848 0735
Fax: (+44-0) 7277 1462
E-mail: g.thornicroft@iop.kcl.ac.uk
BIBLIOGRAPHY – UNITED KINGDOM
Becker, T., Knapp, M., Knudsen, H.C., Schene, A., Tansella, M., Thornicroft, G. and Vazquez-
Barquero, J.L. (1999). The EPSILON study of schizophrenia in five European countries. Design
and methodology for standardising outcome measures and comparing patterns of care and
service costs. British Journal of Psychiatry, 175, 514–521.
Becker, T., Knapp, M., Knudsen, H.C., Schene, A. H., Tansella, M., Thornicroft, G. and Vazquez-
Barquero, J.L. (2000). Aims, outcome measures, study sites and patient sample. EPSILON
Study European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. British
Journal of Psychiatry, Supplementum, 39, s1–s7.
138 United Kingdom
Canvin, K., Bartlett, A. and Pinfold, V. (2002). A ‘bittersweet pill to swallow’: learning from
mental health service users’ responses to compulsory community care in England. Health and
Social Care in the Community, 10(5), 361–369.
Hatfield, B., Shaw, J., Pinfold, V., Bindman, J., Evans, S., Huxley, P. and Thornicroft, G. (2001).
Managing severe mental illness in the community using the Mental Health Act 1983: a com-
parison of supervised discharge and guardianship in England. Social Psychiatry and Psychiatric
Epidemiology, 10, 508–515.
Huxley, P. and Thornicroft, G. (2003). Social inclusion, social quality and mental illness. British
Leff, J. (2000). Family work for schizophrenia: practical application. Acta Psychiatrica
Scandinavica, Supplementum, 102(407), 78–82.
Leff, J. (2002). Science and society: the psychiatric revolution: care in the community. Nature
Reviews Neuroscience, 3(10), 821–824.
Pinfold, V. (2000). ‘Building up safe havens ... around the world’: users’ experiences of living in
the community with mental health problems. Health and Place, 6(3), 201–212.
Pinfold, V. (2002). ‘Inclusion in the whole of life: community safety’. In Bates, P. ed. Working
for Inclusion: Making Social Inclusion a Reality for People With Severe Mental Health Problems,
London, Sainsbury Centre for Mental Health.
Pinfold, V. (2003a). Awareness in action: challenging discriminatory and negative attitudes to
mental illness should start at school. Mental Health Care Today, 24–27.
Pinfold, V. (2003b). How Can We Make Mental Health Education Work? Example of a Successful
Local Mental Health Programme Challenging Stigma and Discrimination. London, Rethink
Publications.
Pinfold, V. (2004). Anti-discrimination actions in mental health. Journal of Psychiatric and Mental
Health Nursing, 11(3), 250–252.
Pinfold,V., Bindman, J., Thornicroft, G., Franklin, D. and Hatfield, B. (2001). Persuading the
persuadable: evaluating compulsory treatment in England using supervised discharge orders.
Social Psychiatry and Psychiatric Epidemiology, 36(5), 260–266.
Pinfold, V., Huxley, P., Thornicroft, G., Farmer, P., Toulmin, H. and Graham, T. (2003a). Reducing
psychiatric stigma and discrimination – evaluating an educational intervention with the police
force in England. Social Psychiatry and Psychiatric Epidemiology, 38(6), 337–344.
Pinfold, V., Toulmin, H., Thornicroft, G., Huxley, P., Farmer, P. and Graham, T. (2003b). Redu-
cing psychiatric stigma and discrimination: evaluation of educational interventions in UK
secondary schools. British Journal of Psychiatry, 182, 342–346.
Ruggeri, M., Lasalvia, A., Bisoffi, G., Thornicroft, G., Vazquez-Barquero, J.L., Becker, T.,
Knapp, M., Knudsen, H.C., Schene, A., Tansella, M. and EPSILON Study Group. (2003).
Satisfaction with mental health services among people with schizophrenia in five European
sites: results from the EPSILON Study. Schizophrenia Bulletin, 29(2), 229–245.
van Wijngaarden, B., Schene, A., Koeter, M., Becker, T., Knapp, M., Knudsen, H.C., Tansella, M.,
Thornicroft, G., Vazquez-Barquero, J.L., Lasalvia, A., Leese, M. and EPSILON Study Group.
(2003). People with schizophrenia in five countries: conceptual similarities and intercultural
differences in family caregiving. Schizophrenia Bulletin, 29(3), 573–586.
17
Working in Partnership – Australia
The Schizophrenia Australia Foundation was founded in 1986. In 1996, the same
year the World Psychiatric Association (WPA) began its global programme to fight
the stigma and discrimination because of schizophrenia, the foundation changed
its name to SANE Australia. Recognizing the value of sharing information and best
practices in their efforts, the WPA global programme and SANE Australia have
worked in partnership for nearly a decade, promoting anti-stigma strategies and
tactics at seminars and congresses around the world.1
Barbara Hocking, Executive Director of SANE, has worked in collaboration with
Dr Alan Rosen of the WPA on a variety of initiatives. The goal of SANE Australia is
to: ‘promote the interest of people with mental illness and educate the general com-
munity through the media.’ They have established their own information resources
for the media, as well as for those living with mental illness, their families and care-
givers. They have also achieved significant success in working in collaboration with
the media.
A wealth of information resources

SANE Australia published a news magazine, SANE News, which has included
articles on issues such as the Social Costs of Mental Illness, Drug and Alcohol
Abuse, as well as Art and Mental Illness. These articles are archived on the SANE
website: www.sane.org
The website also includes resources such as fact sheets on mental illness, an
information portal that lets visitors post questions on mental illness, and press
releases on stigma issues in the news. A Charter campaign at the web site also
encourages individuals to sign a Charter calling for action to end stigma and
discrimination because of mental illness. The Charter has been signed by notable
1 The Mental Health Foundation of New Zealand has also had a successful long-term programme to fight
stigma and discrimination. Called ‘Like Minds Like Mine’, the programme is targeted to all mental illness
and is a government-funded campaign managed by the Ministry of Health.
139
140 Working in Partnership – Australia
Australians such as the Olympic gold-medallist, Dawn Fraser, international rock

star, Peter Garrett, and Archbishop Peter Hollingworth.
The SANE StigmaWatch Programme proactively identifies and addresses stig-
matizing depictions of those with mental illness in the news and entertainment
industries. Their phone and letter writing campaigns have been successful in stop-
ping the distribution of computer games that referred to the mentally ill as ‘a
twisted little tribe of freaks’ and ‘maniacal killers’. In 2000, the group was successful
in encouraging the distributors of the movie ‘Me, Myself and Irene’ to remove
stigmatizing language from the packaging of the video release.
SANE is an active member of the Media and Mental Health group set up by
the federal government. This group has been responsible for the development and
dissemination through media briefings of a press kit entitled: Reporting Suicide and
Mental Illness, a resource for media professionals. SANE has also produced a video,
‘Stigma, Mental Illness and the Media’, which includes interviews touching upon
the effects of media portrayals on those living with mental illness. The video is
another resource used in briefings of journalists and members of the media.
The group’s website also has a bookshop that includes recommended books,
audio- and videotapes, and CD-ROM educational kits.
In collaboration with the media
Many of the elements described above are designed as correctives for the mis-
information disseminated by the media. However, another strategy that SANE
Australia has employed has been the active promotion of a realistic portrayal of a
character with mental illness in a popular television series. SANE Australia worked
with writers of the series on accurately portraying symptoms of the illness and
describing various treatment options. The actor and his character were featured on
information booklets and pamphlets. The network also provided a link from the
programme’s website to the SANE Australia website.
Award-winning efforts
In December 2003, SANE Australia received the Human Rights Community Award
from Australia’s Human Rights and Equal Opportunity Commission for the efforts
described above. In September of the same year, the group received the Award for
Exceptional Contribution to Mental Health Services at the Mental Health Services
Conference in Canberra.
SANE Australia, its Executive Director, Barbara Hocking, and Board Member,
Alan Rosen continue to join the WPA in presentations around the world on the
fight against the stigma and discrimination because of schizophrenia.
141 Award-winning efforts
For more information on the Partnership Programme in Australia,

please contact
• Barbara Hocking (Coordinator)
Executive Director, SANE Australia
P.O. Box 226
South Melbourne
Victoria 3124, Australia
Phone: (+61-3) 9682 5933
Fax: (+61-3) 9682 5944
E-mail: barbara.hocking@sane.org
• Alan Rosen
Mental Health Services
Royal North Shore Hospital and Community Mental Health Services
55 Hercules Street
Chatswood, NSW 2067, Australia
E-mail: arosen@doh.health.nsw.gov.au
18
Chile, India and Romania
Not every Local Action Group secures the funding it seeks. Not every programme
coordinator is able to stay with a programme for 2, 3 or 4 years. People move.
Alliances shift. Some programmes may stall as new funding or personnel are
secured.
In this chapter we will examine three countries where programmes have yet to
achieve the kind of critical mass other programmes have achieved for sustained
anti-stigma efforts. One feature stressed over and over by members of the Global
Programme Steering Committee is that the Open the Doors programme is not a
campaign.
Campaigns tend to be short-term initiatives – limited in scope, time or funding.
Unfortunately, the stigma and discrimination because of schizophrenia is not a
short-term problem. One very real negative of campaign approaches is that they
can raise hopes of the participants in the short term. Consumers and family mem-
bers, who commit to these effects and see initial interest from politicians or the
community at large, may watch as the course of a ‘campaign’ ends and things return
to status quo.
The following examples are of Local Action Groups that have begun ini-
tiatives (e.g. executed the first phase of research with focus groups) but have
been unable to develop beyond a geographic area, link up to other efforts in
other parts of the country, or sustain the initial momentum. All three of these
initiatives prepared reports and presentations for the World Psychiatric Asso-
ciation (WPA) World Congress in 2002 but have since undergone significant
changes.
Chile
In the late 1970s and 1980s, the dictator Augusto Pinochet dismantled the Chilean
National Health Service. During the decades that followed with the introduction
of the privatized Isapre health care system, service for low-income families fell
precipitously and mental health services overall declined.
142
143 Chile
With the passing of Pinochet, a number of health care reforms have been under-
taken. A report by the World Health Organization (WHO) found that relative
to the published national plans for mental health in other countries in Latin
America: ‘Mexico and Chile are, so far, the best examples of the use of more
thorough indicators, and scientific and technical foundations’ (Bulletin of WHO
2000, 784).
In 2001, initial efforts focused on two districts in the metropolitan centre of San-
tiago, including the San Joaquin district (population: 114,017) and the Santiago
district (population: 229,596). A Local Action Group was formed including repre-
sentatives from the Health Services of both San Joaquin and Santiago, the University
of Santiago, the Association of Families, the Mental Health Unit of the Ministry of
Health, and the Chilean Society of Neurology, Psychiatry and Neurosurgery.
One of the first decisions of the group was to undertake surveys of knowledge
and attitudes from a wide range of groups: high school teachers, offices of the
General Hospital, officials from non-governmental social organizations, police,
Ministry of Health officials, medical students at the University of Santiago and
family members.
One measure of the public attitudes – or at least of the media’s influence on
those attitudes – was an analysis conducted by two newspapers in Chile: Las Últimas
Noticias and La Nación. In Las Últimas Noticias, a newspaper with a daily circulation
of 150,000, 2555 news items were reviewed. Researchers found 157 texts directly or
indirectly related to persons that suffer from mental illness.
In La Nación, with a daily circulation of 30,000, 2598 articles were reviewed with
99 (3.4%) involving individuals that suffered from mental illness.
Researchers found that in terms of context of the stories these items fell into one
of five categories:
• Reports of violence to others.

• Reports of violence to oneself.
• Reports that presented the individual in a ‘comic’ light.
• Articles offering information on mental illness.
• Reports not related to the mental illness.
Interventions in the psychiatric community

On 12 February 2002, the Chilean Ministry of Health issued Resolution No. 375, a
resolution supporting the work of the Local Action Group in reducing stigma due to
schizophrenia. That year, four organizations were engaged to assist in interventions
in the medical community: Psychiatric Service in the Regional Hospital in Iquique,
the School of Nurses of Iquique, the Qualification Programme on Addiction in
Puerto Montt and Youth Psychiatry Services at the Hospital ‘Barros Luco Trudeau’.
144 Chile, India and Romania
Educational programmes focusing on stigma were presented to psychiatric ser-

vice teams in the district of Santiago, as well as to the Social Psychiatry Commission
of the Society of Neurology, Psychiatry and Neurosurgery. A symposium addressing
‘Stigma and Esquizofrenia’ was held in Health Region IX.
Educational programmes were also undertaken with social workers involved in
serving the Santiago community – both at the General Hospital and in the district
itself. Stigma-related presentations were also given to fifth year medical students at
the University of Santiago.
Consumers and family members

In 2002, the group also hosted a meeting of family members at the Hospital of Cas-
tro to discuss issues surrounding stigma and discrimination because of schizophre-
nia. The group also hosted a national meeting of family members at La Serena.
With the departure of the key coordinator, the programme has been on hold
since 2003. The WPA hopes that new organizers working with the infrastructure of
organizations already established in Santiago – and with the support of the Ministry
of Health with Resolution No. 375 – can reinvigorate anti-stigma efforts in Chile.
For more information on the Global Programme in Chile, please contact

• Carlos Caceres Gonzalez
Pampa Engañadora 3168
Iquique, Chile
Phone: (+057) 328762
E-mail: carloscaceres2000@hotmail.com
REFERENCE – CHILE
Bulletin of the World Health Organization (2000). 78(4).
BIBLIOGRAPHY – CHILE
Alarcón, R.D. and Aguilar-Gaxiola, S.A. (2000). Mental health policy developments in Latin
America. Bulletin of the World Health Organization, World Health Organization, 78(4),
483–490.
Navarro, V. (2000). Assessment of the World Health Report 2000. The Lancet, 356, 1598–1601.
Vicente, B., Vielma, M., Jenner, F.A., Mezzina, R. and Lliapas, I. (1993a). Attitudes of professional
mental health workers to psychiatry. International Journal of Social Psychiatry, 39(2), 131–141.
Vicente, B., Vielma, M., Jenner, F.A., Mezzina, R. and Lliapas, I. (1993b). Users’ satisfaction with
mental health services. International Journal of Social Psychiatry, 39(2), 121–130.
145 India
Santigotimes, Public Health Care system in the spotlight study reveals performance often does
not meet international standards, 8 May 2001, CHIP News.
The Times of India, Wealth of Ill-Health, 24 June, 2000, Bennett, Coleman & Co Ltd.
Santiago Times, Over a Third of Chileans Suffer from Mental Illness, 3 July, 2001, CHIP News.
India
While a few of the programmes in this volume have been ambitious enough to start
as national initiatives as opposed to expanding outward from a single metropolitan
area, the challenge of initiating a national programme in the second most populous
country on the planet begs for a word beyond ‘daunting’.
The country is divided into 28 states – each with its own health care delivery ser-
vice. The population in India now tops 1 billion – served by fewer than 4000 psych-
iatrists (and many of these in private practice). Today there is roughly one mental
health worker (psychiatrist, clinical psychologist or nurse) for every 250,000 people.
In terms of government support of mental health, a report in the Psychiatric
Bulletin in 2002 notes: ‘Although there is a Mental Health Act, use of mental health
legislation is virtually non-existent’ (Das et al., 2002). Development of community
services furthermore ‘appear to be low on the priority list of the government and
funding is a major issue’.
The importance of family support

Professor Narendra N. Wig, member of the WPA Steering Committee from India,
has observed the difference between psychiatry in India and Western countries is
the involvement of the family in treatment regimen. ‘My colleagues in the West
were discussing how successful they were at seeing family members and educating
them about schizophrenia.’ ‘Success’ was measured as actively involving 20–25%
of the families in treatment of a family member.
‘When asked about my experience in India, I find the question of “percentage” to
be almost irrelevant. The vast majority of our patients arrive with a family member.
These relatives also stay in the wards with patients – assisting us with a number of
duties in the care of that person.’
Although this may be changing somewhat with on-going industrialization
(Sethia and Chaturvedi, 1992), the involvement of family members is a key fea-
ture of Indian psychiatry and an essential component in the study of the stigma
associated with schizophrenia.
The National Institute of Mental Health and Neuroscience (NIMHANS) in
Bangalore, with the guidance of Dr R. Srinivasa Murthy, sought to coordinate
efforts in four major centres in India: Bangalore, Chennai, Delhi and Mumbai. Key
to development of the Local Action Groups in each city was the involvement of
consumer and family support organizations.
In Chennai, for example, SCARF is a voluntary organization that has been
working with consumers living with schizophrenia and their families for more
than 15 years. Another group, AASHA, is a family support organization that has
developed a self-help approach with city officials.
RAHAT, a volunteer organization involved with issues concerning mental illness
and drug dependency, provided support to the local action group in Delhi.
PRERANA is a voluntary support organization in Mumbai involved in suicide
prevention. Working with MAITHRI, an initiative that was begun by psychiatrists,
the Local Action Group has begun to develop more family support structures within
the Mumbai community.
Funding limitations, however, have precluded any epidemiological data from
being gathered and compared among the centres. This is not to say that efforts in
India were unsuccessful.
From 25–26 May 2001, family members and caregivers from two dozen centres
across India participated at a conference in Chennai. The object of this meeting
was to provide support and networking so that consumers and family members
move from recipients of services to active participants, from being the object of
stigma to active, organized opponents.
These family organizations have begun to work with international service organ-
izations such as the Rotary and Lions Clubs to develop further employment
opportunities for consumers. These family groups now run special awareness pro-
grammes on stigma during events such as World Health Day, Mental Health Week
and World Disabled Day. Family groups have also become more active in public ral-
lies, seeking improved services for individuals with physical and mental disabilities.
New initiatives
On 6 February 2004, Dr Abdul Kalam, President of India, helped launch a renewed
anti-stigma effort in India – that includes a collaboration between SCARF and the
WPA Global Programme. The President spoke to university students gathered at
the Music Academy in Chennai. At the event, he asked students to take an oath not
to stigmatize or discriminate against the mentally ill.
The event was covered by both the print and broadcast media. Since then, a
short film has been developed in Tamil and English for educating students in high
schools and universities.
In recognition of World Schizophrenia Day on 24 May 2004, SCARF organized
a number of other activities for the public:
• Articles on schizophrenia were published in newspapers that included: The
Hindu, Anna Nagar Times and Dina Mani.
147 India
• A message about schizophrenia was printed on milk packets sold in markets for
the general public.
• Pamphlets about World Schizophrenia Day and schizophrenia were distributed
at hospitals and shopping malls.
• A programme of interviews of psychiatrists and those living with schizophrenia
was broadcast on Podhigai television in prime time. The participants dis-
cussed the first-hand experience of the stigma and discrimination because of
schizophrenia.
World Schizophrenia Day also marked the start of a new support programme
called SHAPES (Society of Hope, Action, Empathy and Regard for Schizophrenia),
started by patients and family members.
Educational initiatives
Awareness programmes on mental health and mental illness have been conducted
in 10 schools and colleges in Chennai. Working with Sowmanasya Hospital, edu-
cational programmes were held in 13 other colleges (including the Colleges of
Nursing, Social Work and Engineering). To date, 4000 students have participated
in these programmes.
Working with the National Service Scheme

The National Service Scheme (NSS) organizes awareness programmes in schools
and colleges on a broad range of social issues and enlists support for volunteer
activities in the community. Working in cooperation with members of the NSS,
the Chennai Local Action Group has been able to ‘train the trainers’ to disseminate
more information to the general public on mental illness. NSS leagues in colleges
adopt villages in neighbouring districts and conduct volunteer social service activ-
ities. The goal is to create an educational network built upon mutual trust and
community service.
This networking with social groups will continue with educational programmes
to law enforcement personnel, as well as social support organizations in rural com-
munities around Chennai including Kattangulathur, Minjur and Karlapakkam.
Perhaps one of the most important educational initiatives planned, given the
importance of the family doctor in early detection and diagnosis of mental illness,
is for medical students and general practitioners.
With successful implementation in and around Chennai, SCARF plans on work-
ing with other major urban and rural communities in a broader network to combat
the stigma and discrimination because of schizophrenia.
For more information on the Global Programme in India, please contact

• R. Thara
Schizophrenia Research Foundation
R/7A, North Main Road
West Anna Nagar Extension
Chennai 600 101, Tamil Nadu, India
Tel: (+91-044) 26153971, 26151073
E-mail: scarf @ vsnl.com
BIBLIOGRAPHY – INDIA
Das, M., Gupta, N. and Dutta, K. (2002). Psychiatric training in India. Psychiatric Bulletin, 26,
70–72.
Harrison, G., Hopper, K., Craig, T., Laska, E., Siegel, C., Wanderling, J., Dube, K.C., Ganev, K.,
Giel, R., an der Heiden, W., Holmberg, S.K., Janca, A., Lee, P.W., Leon, C.A., Malhotra, S.,
Marsella, A.J., Nakane, Y., Sartorius, N., Shen, Y., Skoda, C., Thara, R., Tsirkin, S.J., Varma,
V.K., Walsh, D. and Wiersma, D. (2001). Recovery from psychotic illness: a 15- and 25-year
international follow-up study. British Journal of Psychiatry, 178, 506–517.
James, S., Chisholm, D., Murthy, R.S., Kumar, K.K., Sekar, K., Saeed, K. and Mubbashar, M.
(2002). Demand for, access to and use of community mental health care: lessons from a
demonstration project in India and Pakistan. International Journal of Social Psychiatry, 48(3),
163–176.
Mojtabai, R., Varma, V.K., Malhotra, S., Mattoo, S.K., Misra, A.K., Wig, N.N. and Susser, E.
(2001). Mortality and long-term course in schizophrenia with a poor 2-year course: a study
in a developing country. British Journal of Psychiatry, 178(1), 71–75.
Murthy, R.S. (1998). Rural psychiatry in developing countries. Psychiatric Services, 49(7),
967–969.
Murthy, R.S. (2000). Community resources for mental health care in India. Epidemiologia e
Psichiatria Sociale, 9(2), 89–92.
Murthy, R.S. and Burns, B.J. (eds) (1992). Proceedings of the Indo-US Symposium on Commu-
nity Mental Health, Sponsored by National Institute of Mental Health and Neuro Sciences,
Bangalore: NIMHANS.
Samuel, M. and Thyloth, M. (2002). Caregivers’ roles in India. Psychiatric Services, 53(3),
346–347.
Schulze, H. (1999). Schizophrenia stigma and discrimination: an India perspective. OpenDoors,
The Newsletter for the Global Schizophrenia Awareness Program, Vol. 2.
Sethi, B.B. and Chaturvedi, P.K. (1992). Family and social support systems in the case of the
mentally ill. In: Murthy, R.S. and Burns, B.J., eds. Proceedings of the Indo-US Symposium on
Community Mental Health. Sponsored by National Institute of Mental Health, Neuro Sciences.
Bangalore: NIMHANS, pp. 277–288.
149 Romania
Srinivasan, T.N. and Thara, R. (1997). How do men with schizophrenia fare at work? A follow-up
study from India. Schizophrenia Research, 25(2), 149–154.
Srinivasan, T.N. and Thara, R. (1999). The long-term home-making functioning of women with
schizophrenia. Schizophrenia Research, 35(1), 97–98.
Srinivasan, T.N. and Thara, R. (2001). Beliefs about causation of schizophrenia: do Indian
families believe in supernatural causes? Social Psychiatry and Psychiatric Epidemiology, 36(3),
134–140.
Thara, R., Kamath, S. and Kumar, S. (2003a). Women with schizophrenia and broken marriages –
doubly disadvantaged? Part I: patient perspective. International Journal of Social Psychiatry,
49(3), 225–232.
Thara, R., Kamath, S. and Kumar, S. (2003b). Women with schizophrenia and broken marriages –
doubly disadvantaged? Part II: family perspective. International Journal of Social Psychiatry,
49(3), 233–240.
Thara, R., Padmavati, R. and Srinivasan, T.N. (2004). Focus on psychiatry in India. British Journal
of Psychiatry, 184, 366–373.
Thara, R. and Srinivasan, T.N. (1997). Outcome of marriage in schizophrenia. Social Psychiatry
and Psychiatric Epidemiology, 32(7), 416–420.
Thara, R. and Srinivasan, T.N. (2000). How stigmatising is schizophrenia in India? International
Journal of Social Psychiatry, 46(2), 135–141.
Romania
The WHO Report on Mental Health in Europe (2001) reported that ‘in the last
5–6 years there has been an increasing acceptance for both patients’ rights and
psychiatric ethics (in Romania)’. However, the ‘list of shortcomings which need to
be addressed’ was formidable:
• Lack of up-to-date comprehensive studies on morbidity or studies evaluating
population needs within a definite area or with certain risk factors.
• Lack of (or only a rudimentary level of) multidisciplinary teams for out-
patients, due to the reduced number (or even absence) of persons and/or
necessary positions (psychologists, social workers, vocational therapists and legal
advisors).
• The development of social protection and non-medical ways of helping some
categories of mentally ill patients and some populations with a high risk for
mental illness.
• Insufficient day centres and counselling services (of various types).
• Lack of effective coordination of the care services at the national level.
• Postgraduate specialist training is still based on an excessively biological and
reductionism model, which seems to promote pharmacotherapy as the only
really effective and credible therapeutic approach. Continuing education is
inadequate.
• Liaison psychiatry, forensic psychiatry, community psychiatry and psychother-

apy are not officially recognized.
• The general practitioners and other specialists lack basic psychiatric know-
ledge and have little capacity to provide psychiatric help or make referrals to
psychiatrists.
In October 2001, a national anti-stigma programme was announced. The
Local Action Group consisted of psychiatrists and mental health care workers
and included the president of the Romanian League for Mental Health. The pro-
gramme received official recognition from the Romanian Academy, the Minister
of Health, and the Prime Minister. Eli Lilly – Romania provided logistical and
financial support.
For the country of roughly 22.5 million, the Local Action Group defined five
long-term programme objectives:
• To evaluate existing mental health policy.
• To increase positive media presentations on issues concerning schizophrenia.
• To maintain and update the national database of the League for Mental Health.
• To increase the number of professionals involved in the Local Action Groups.
• To organize regular conferences on schizophrenia, and the stigma and discrim-
ination that accompany it.
In 2002, a number of interventions were undertaken including workshops with
students in secondary schools, active involvement with journalists and the media
to disseminate anti-stigma messages, and exhibitions of the poetry and artwork
of those living with mental illness. Six centres in five cities throughout Romania
began working with theatre groups to develop productions that would dramatize
issues of stigma and discrimination due to mental illness.
For reasons unknown to the WPA Programme Steering Committee, little infor-
mation is available as to why the initiatives yielded no data beyond the interventions
cited above. While certain key coordinators appear to have moved on from the pro-
gramme it is unclear if the national ambitions of the effort outstripped available
financial resources or the time of volunteers involved.
For more information on the Global Programme in Romania, please contact

• Raluca Nica (Coordinator)
Romanian League for Mental Health
Sos. Mihai Bravu 90-96, B1 D17, Sc 4, Ap 149 Sector 2
Bucharest, Romania
Phone/Fax: (+40-1) 252 0866
E-mail: lrsm@dnt.ro
151 References – Romania
• Bogdna Tudorache (Advisor)

President, Romanian League for Mental Health
Sos. Mihai Bravu 90-96, B1 D17, Sc 4, Ap 149 Sector 2
Bucharest, Romania
Phone/Fax: (+40-1) 252 0866
REFERENCES – ROMANIA
WHO (1996). Health Care Systems in Transition: Romania. Copenhagen: World Health
Organization Regional Office for Europe.
WHO (2001). Mental Health in Europe. Country reports from the WHO European Network on
Mental Health.
19
Conclusions and Recommendations
One of the key, and compared to many other anti-stigma efforts, unique elements to
the success of the local action initiatives described in this volume is collaboration:
that is, collaboration among those living with schizophrenia, their families and
support groups, medical professionals, government officials and other experts.
From the first-person perspective of the patient or family member to the expertise
of a public relations professional, each Local Action Group brings together a variety
of perspectives.
As an international initiative, the anti-stigma programme of the World Psychi-
atric Association (WPA) has been able to offer its participants four advantages.
First, Local Action Groups in 20 countries have developed nearly 200 interven-
tions to a wide range of target groups. As we will see in comparisons later in
this chapter, results from these interventions can be compared and contrasted to
determine new, more effective ways forward.
Second, the WPA Programme has allowed each new group that joins to learn
from earlier efforts following the same methodology. For example, members of
the Partnership Programme from Calgary, Canada have met with groups in Europe
and Latin America to develop strategies for educating and changing attitudes of
children in secondary schools. Similarly, the family support group, Schizophrenia
Research Foundation (SCARF), in Chennai has been able to share its experiences
with other nascent family support groups in other countries. In addition to these
exchanges, there were two International Conferences focused on the Stigma and
Discrimination because of Schizophrenia – the first held in Leipzig, Germany
and the second held in Kingston, Canada – have served as instructional forums
and networking opportunities for the diffusion of best practices.
Third, intra-country cooperation has also benefited from the WPA international
alliances. By joining the WPA global effort, Local Action Groups have been able
to extend their own reach and involvement and, in essence, to broaden the
table for participating groups in a country. Governmental and non-governmental
organizations that had not worked together found common ground in this inter-
national programme. In West Kent (UK) and Calgary (Canada), family support
152
153 Structure and flexibility
organizations that had worked separately in the same city (in one case, across the
street from each other) came together and worked side-by-side for the first time.
Fourth, all of the material prepared by the global programme – from the step-by-
step guide in Volume I to the stigma bibliography – have served as central resources.
The experience gained and tools used in earlier interventions were applied to later
efforts. In their work with medical professionals in Spain, the Local Action Group
there published Volume II as a stand-alone reference book on schizophrenia, its
treatment and issues surrounding stigma and discrimination.
The global web site, www.openthedoors.com, has been translated from English
into Arabic, German, Greek, Italian, Japanese, Portugese and Spanish. This web site
provides an overview of the objectives and participants in the programme. More
important, it also contains information from Volume II of the programme materials
described above. For those living with the illness and their families, the web site
also contains educational material taken from a training manual developed by the
Local Action Group in Calgary, Canada. Visitors to the web site are also able to
download electronic versions of the programme volumes as well as informational
brochures developed for different target groups. A password-protected Intranet
site was also made available for programme participants to share information in a
less public forum than the Internet.
Statistical analysis of web site traffic from 1999 to 2001 found that visitors from
different countries increased dramatically – sometimes 100-fold – when a Local
Action Group was established in that country. Factoring out the disproportionate
traffic from the US during the first few years of the programme, the greatest number
of visitors were from Canada, Spain and Germany, where Local Action Groups were
in place.
Structure and flexibility
Volume I of the programme materials specified a very particular methodology

for development of the Local Action Group and implementation. Yet these guide-
lines were flexible enough to allow each site to act upon local opportunities and
address any local limitations. In the final analysis, the work of these centres was as
operationally similar as the countries were culturally different.
One example is how initiatives moved from local to national in scope. The
majority of programmes sought to first establish a local presence in one city or
metropolitan region (e.g. Madrid) or several (e.g. Sendai, Tokachi and Okayama)
before taking the programme nationally.
Some programmes, by design or limitation of resources, did not diffuse beyond
their initial target communities (e.g. Boulder, Colorado in the US). Yet, even these
programmes had elements that extended beyond any set geographical boundary.
154 Conclusions and recommendations
In Boulder, for example, the training course for law enforcement officials and
judges is being used in other communities in the US.
Since those guidelines were first developed, the WPA Anti-stigma Programme
has also developed a training manual to help countries interested in starting their
own programme. This training manual has been distributed at workshops at sci-
entific conferences and contains more specific information on such topics as: ‘How
to conduct focus group research’ and ‘Selection of target audiences’.
Overall, the model of successfully implementing a local initiative before extend-
ing that work nationally is the approach recommended by the authors of this
volume. How one diffuses the programme nationally is a function of resources and
time. Initiatives of this programme that have a national reach are generally of three
types.
Both Poland and Greece began with strong organizing groups in a major
metropolitan area – Krakow and Athens, respectively. While few anti-stigma efforts
will have the advantage of having one of its chief organizers appointed Minister of
Health, as in the case of Greece, what both of these nationally successful groups
share is a central organizing committee with more than one individual responsible
for key decisions.
The national anti-stigma effort in Germany benefited from the fact that one of
the chief organizers, Professor Wolfgang Gaebel, was also a member of the National
Schizophrenia Research Network. His office in Düsseldorf was the central reporting
centre for seven other sites in this network, each site developing its own unique
intervention. The collective results from the nationwide initiative have yet to be
compiled and published, but preliminary results from some of Professor Gaebel’s
work and others are available. (See references for Chapter 5 on Germany.)
Austria and Romania are examples of a third type of national effort which relied
upon a central organizing group to implement a single, coordinated national initia-
tive from the very outset. In the case of Austria, the national effort was implemented
through the development and distribution of mass media messages, followed
by more targeted interventions in select high schools. Romania took a national
approach, distributing its messages in pamphlet and booklet form, through the
established national network of a family support organization.
When and how to move from local intervention to national initiative will vary
from country to country and rely upon available structures, such as the reach of
national support organizations or governmental assistance. However, five things
appear to be necessary to make a successful transition:
1 An established model, tested on a local level which can be implemented in other
communities (e.g. education of psychiatrists in Spain).
2 A central organizing group to whom regional teams report on a regular basis.
155 Target groups
3 Some continuity of leadership, involving one or more of the original participants

from the successful local initiative in the larger national effort.
4 Clear, on-going communication between these regional groups and the central
organizing group, and conversely, a sense of involvement by the regional groups
and vision of the national goals of their efforts.
5 A long-term commitment to the programme as a programme, not as a short-term
campaign; too often, campaigns raise expectations of those who have dedicated
their time and may leave those with long-term interests in on-going success
(e.g. patients or family members) disappointed when funding or momentum
are exhausted.
As in the case of Germany, Poland and Spain, the plan to expand the programme
nationally was present in initial planning stages of the Local Action Group. While
most groups may begin with aspirations for regional, national or international
success, it will be important to build the framework for that success even as the
local foundations are being laid.
Target groups
Table 19.1 is a compilation of target groups identified by various Local Action
Groups of the WPA Programme. General practitioners and other health care pro-
fessionals were chosen by every country save Poland, US and UK. As the first point
of medical consultation for both patients and their families, they have been clearly
identified as being one of the groups most in need of anti-stigma interventions
(with psychiatrists and mental health professionals not far behind).
A close second was the target group of journalists and the media. These choices
are notable both because the target groups are sources of information to others
(e.g. family members or the general public) and because how they speak about
the illness and the individual can have an impact on self-stigma as well. (For more
evidence of the importance of these target groups to those living with schizophrenia
and their families, see the Focus Group.)
Another target group identified by 13 of the 18 sites listed in Table 19.1 was
secondary school students. Reasons cited for this choice include the fact that first
episodes of the illness may appear in the late teens and that this group can be reached
through educational programmes in schools. Other reasons for selecting this group
were the inverse relationship between age and attitudes regarding mental illness
(older adults showed greater social distance and were more difficult to reach as a
group) and the fact that younger individuals often become enthusiastic supports
of work against stigma (e.g. as students demonstrated in Egypt).
Table 19.1 Target audiences
General Judicial
Family Primary Psychiatrists practitioners Government and law
members and/or and mental and other Journalists workers and Religious Businesses enforcement
and secondary Medical health health care and the General non-governmental communities and officials,
Consumers friends education students professionals professionals media public agencies and clergy employers lawyers
Austria ✓ ✓ ✓ ✓ ✓
Brazil ✓ ✓ ✓ ✓ ✓ ✓ ✓
Canada ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Chile ✓ ✓
Egypt ✓ ✓ ✓ ✓ ✓
Germany ✓ ✓ ✓ ✓ ✓ ✓
Greece ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
India ✓ ✓ ✓
Italy ✓ ✓ ✓ ✓ ✓ ✓ ✓
Japan ✓ ✓ ✓ ✓
Morocco ✓ ✓ ✓ ✓ ✓ ✓
Poland ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Romania ✓ ✓ ✓ ✓ ✓ ✓
Slovakia ✓ ✓ ✓ ✓ ✓ ✓ ✓
Spain ✓ ✓ ✓ ✓ ✓ ✓
Turkey ✓ ✓ ✓ ✓ ✓ ✓ ✓
UK ✓ ✓ ✓
US ✓ ✓ ✓ ✓ ✓
157 Target groups
Due to the global nature of this programme, when early evidence from the
Partnership Programme in Canada showed marked improvement in knowledge
and attitudes with this target group, other groups used the model and adapted the
methodologies to their own cultural realities. Fay Herrick from the Partnership
Programme in Calgary has served as a consultant with other centres over the
years.
As explained in Chapter 4, the Local Action Group in Spain developed the‘inside-
out model’ for implementation, working with the immediate circle of influencers
on the patient and his or her family. For that reason, the group chose psychiatric
professionals as one of their initial target groups. The goal would be to extend
efforts outward over time as stigma is reduced and as resources allow.
This concentric model showing families and psychiatrists as closest to the patient
influence and gradually radiating out to more distant influencers (and potential
stigmatizers) may explain several relationships between the choice of target groups
and socioeconomic data. That is, the nine countries with the lowest Gross Domestic
Product and fewest psychiatrists per capita chose families as targets for anti-stigma
interventions and support.
Conversely, four of the seven countries with the highest Gross Domestic Product
per capita targeted businesses and employers. In the case of Boulder, Colorado,
working with the local Chamber of Commerce, the Local Action Group had access
to the 10 companies employing 90% of the community’s workers.
Success of work with any of these selected target groups is dependent upon three
factors:
1 The assessment of the first-hand experience of those living with schizophrenia
and their family members – or any other group, including medical professionals
who may be the objects of stigma and discrimination. Looked at from the point
of view of expertise, these individuals and their experiences can provide powerful
insights into how stigma is manifested and how it may be addressed. The Focus
Group section below outlines findings from seven countries where focus groups
were used to assess qualitative information.
2 The involvement of at least one member of the target group in the intervention.
By involving members of the target group, these initiatives were able to gain
access to other members of the target group as well as develop more effective
message and media strategies.
3 The more defined the target audience, the more directly the message and media
strategies will address that audience. While most groups identified the ‘General
public’ as one of their targets, placement of messages in any mass medium
immediately implies some form of segmentation. For example, radio formats
(e.g. talk shows or hip-hop music) and television programmes (e.g. soap operas
or the evening news) skew to certain demographics. The better defined the target
audience – for example, 18- to 24-year olds with a high school education – the
more effective your message and media choices will be.
Focus groups: results from seven countries

Among the countries participating in the programme at present, seven conducted
qualitative studies on the needs and perceptions of people with schizophrenia
and family members. In the local needs assessment for WPA Programme
activities, focus groups were used in Brazil, Germany, Italy, Morocco, Switzerland,
Turkey and UK.
These groups applied the focus group method to achieve five different
ends:
• To understand the stigma experiences of people with schizophrenia and their

families (Brazil, Germany, Italy, Morocco, Turkey, Switzerland and UK).
• To define and test key messages of the programme (Germany and UK).
• To define relevant target groups (Brazil, Germany and UK).
• Monitoring and on-going process evaluation (Germany, Morocco and Turkey).
• Understanding families’ needs for support in crisis situations or at admission to
hospital (Morocco).
Considering the substantial variation in cultural context, language, mental health

care systems and family structures across the seven programme sites, the general
ways in which stigma is affecting the everyday lives of people with schizophrenia
and their families are strikingly similar. Differences between the different countries
only show at the level of very concrete experiences in a particular field of
stigmatization.
Significant similarities also existed between the experiences of stigma and
discrimination as reported both by those living with the illness and their family
members. For example, both groups identified the social isolation they
experienced and the withdrawal of friends and neighbours.
Both groups, in all seven countries, identified negative images in the media,
specifically the association of violence with schizophrenia, as being part of their
experience of stigma. They also identified lack of information among the
general public and public health professionals. Those living with the illness
expressed frustration at exclusion from the labour market, while family members
spoke to the financial burden resulting from that lack of employment. Family
members also reported that they were assigned blame and responsibility for
the illness.
159 Target groups
The four dimensions of stigma

Overall the focus groups revealed a pattern of four general areas in which stigma is
encountered: interpersonal interaction, structural discrimination, public images of
mental illness and access to social roles. These dimensions have been revealed in
the German focus group study on stigma perception of people with schizophrenia
(Schulze and Angermeyer, in press), but appear to be reproduced across the globe.
The first dimension, interpersonal interaction, refers to stigma and
discrimination experienced in the context of social relationships. The reduction of
social contacts ensuing from problems in the interaction with others is perceived
as the central area in which the stigma of schizophrenia is experienced – by
service users and families alike.
However, this dimension is the only one based on interpersonal stigma. The
three remaining dimensions represent more structural barriers. The stigma of
schizophrenia also expresses itself in the situation that the illness represents a
major obstacle denying access to important social roles, predominantly in the
fields of employment and partnership. Beyond the domain of social interaction,
stigma is further experienced through structural imbalances built into legal
regulations, health insurance statutes and political decisions, as well as through
the stereotypical, largely negative attitudes of the public and the media portrayals
reflecting and reinforcing these stereotypes.
While there is agreement between people with schizophrenia, families and
mental health professionals about the general dimensions in which stigma is experi-
enced, they vary significantly in the weight they attached to the different dimensions.
Mental health professionals placed public images of mental illness as the single
most significant dimension of stigma. However, patients and family members
identified interpersonal interactions as the most significant dimension of stigma.
Those living with schizophrenia themselves identified access to social roles also as
far more significant than either mental health professionals or family members.
For family members structural discrimination was a far more important dimension
than for either patients or mental health professionals.
Also, aspects of the experiences assume a different meaning, depending
upon who describes them and upon the context chosen for recounting an
experience. Focus group results show that, with their different foci of attention,
patients, relatives and mental health professionals each put emphasis on
particular aspects of the problem and view stigmatization in the light of their
own everyday experiences and specific interests. This variation supports the WPA
approach of considering the perspectives of all groups involved in struggling with
schizophrenia in order to get a comprehensive picture of how the stigma attached
to the illness affects the patients’ quality of life, self-esteem and chances to benefit
from optimal treatment services. This more holistic approach allows Local Action
Groups to consider aspects of stigma that might not be seen by either group alone.
What should be done? Suggestions for anti-stigma

interventions
Stigma experiences of services users and families form the basis for
programme development in the WPA effort against stigma. Suggestions for
anti-stigma interventions reflect the areas where service users and relatives
detected stigma. Four main areas for activities against stigma were identified.
A summary of the suggested areas for anti-stigma interventions is given in
Figure 19.1.
1 Public relations – working with the media

– Articles in popular newspapers/magazines
– Festivals, events, workshops, seminars
– Public relations by psychiatric service institutions
– Internet, new media
2 Changes in mental health care
– More communication with patients and relatives
– More out-patient and preventive services
– More community-based services, better networking
– Involve users and families in evaluating mental health services
3 Support for users and families
– Training programmes: stigma-coping, empowerment, social
competencies
– More information about schizophrenia/treatment options in
lay terms
– Creation of job opportunities
4 Education and training
– Mental health as a topic in school (for students and teachers)
– Improvement of psychiatric training
– Better education about schizophrenia for health professionals,
especially general practitioners
– Training seminars for employers
– Training seminars for the police and legal professionals
Figure 19.1 What should be done? – Four areas of intervention
Communication messages: Who we are and how we’d like

to be seen
Focus groups have also been used to develop and test communication messages
for various programme activities. Looking at the way in which people with
schizophrenia and their families would like to see themselves portrayed
161 Target groups
in the WPA Programme, three key messages become apparent from the many
suggestions made in the focus groups:
We are people just like you!

Schizophrenia can be treated, and we can live with it!
Stigma hurts. Stigma destroys life chances. Stop it now!
These themes imply the desire to highlight commonalties between those with
schizophrenia and the general public, to focus on family roles, hobbies, music
preferences, favourite dishes or special sporting successes rather than only on the
illness in their public portrayal, and to create an awareness that schizophrenia can
affect anyone – something many of those living with the illness would not have
believed themselves before the onset of the illness. The focus of the messages
also indicates that hope and a perspective for improvement or stability are of
great importance in coping with schizophrenia and its consequences, and that
achieving a kind of normality seems desirable – both in the patients’ own lives
and for the image of schizophrenia they would like to see advanced.
Monitoring and process documentation: How do people with

schizophrenia benefit?
In Turkey and Germany, focus groups were conducted at regular intervals to
assess how service users perceive programme process. For this, the same people
who had participated in the focus group session for the needs assessment were
invited several times so that they could offer their input as the project developed.
A second series of focus groups was carried out with people with schizophrenia
who actively participated in various anti-stigma projects to get their views whether
and how they actually benefited from their involvement. Identifying needs for
support was a second aim of these groups.
While the data is from a very small sample, the initial feedback from
participants is encouraging. With increasing duration of their work for the
programme, those living with the illness reported a growing self-esteem and
confidence, which helped them to challenge stigmatizing behaviour and reject
devaluating statements about themselves.
Finally, people with schizophrenia on the project teams learn a lot through their
involvement. Many of them even feel that they acquired skills that better qualify
them for a job on the first labour market, that they are doing a kind of a
traineeship for ‘the real world’.
Focus group successes

Focus groups have been a useful tool for the WPA Programme in identifying areas of
intervention that reflect the needs and perceptions of those who are exposed to the
stigma and know best what stigma means in practical terms. The method with its
non-directive approach stimulates communication among group participants
rather than predominantly between the facilitator and individual group members.
It has also helped to encourage people with schizophrenia and their families to
articulate grievances and negative experiences which may otherwise have
remained hidden from the views of programme developers due to social
desirability.
In addition to understanding the demands on an effective anti-stigma effort,
focus groups have also helped to involve service users and families from the start
of the programme. The participation of all relevant partners is crucial for
programme sustainability and the credibility of communication messages. In
addition, some focus group participants stayed with the project and have joined
the local action committees and project teams.
Finally, as it appears from the first feedback of service users
and family members actively supporting the project, basing an important part of
the needs assessment on the perceptions of people with schizophrenia and their
carers has helped to ensure that those at the receiving end of stigma benefit from
the programme, continue to support it and have developed a sense of ownership
which is so important in sustaining a continuous programme to fight stigma and
discrimination.
Report prepared by Beate Schulze
A question of media
Table 19.2 presents a list of almost 200 interventions undertaken in the various
countries participating in the WPA effort. Nearly half of these were educational
programmes targeted to children and adolescents, psychiatrists, general practition-
ers and other health care professionals, journalists, clergy and family members.
Research from these initiatives supports earlier findings that targeted community
educational efforts are most effective at changing knowledge and attitudes (Wolff
et al., 1996).
Nearly every Local Action Group was also able to generate press coverage in news-
papers and magazines, both local and national. Editors of these publications are
often looking for news stories. Similarly, many reporters are interested in having
experts they can contact for news stories that involve mental health issues. Finding
these editors and journalists can prove invaluable in future presentations of stories
in the news as well as with the effectiveness of stigma watch or stigma-busting
efforts.
Table 19.2 Global Activity Report 2003
Austria Brazil Canada Chile Germany Greece Japan Italy Morocco Poland Slovakia Spain Turkey UK US
Survey of ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
knowledge/
attitudes
Speaker’s bureau ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Primary and/or ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
secondary
education
Educating ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
psychiatrists
Educating GPs ✓ ✓ ✓ ✓ ✓ ✓ ✓
Educating other ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
health care
professionals
Educating ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
journalists
Stigma Busting/ ✓ ✓ ✓ ✓ ✓ ✓
Stigma Watch
Educating clergy ✓ ✓ ✓ ✓ ✓
Publications in ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
scientific journals
Publications in ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
newspapers/
magazines
(continued)
Table 19.2 (continued)
Austria Brazil Canada Chile Germany Greece Japan Italy Morocco Poland Slovakia Spain Turkey UK US
Radio ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
programmes
Television ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
programmes
Anti-stigma ✓ ✓ ✓ ✓ ✓
awards
Theatre/ ✓ ✓ ✓ ✓
dramaturgic
presentations
Story workshops ✓ ✓ ✓
Art presentations/ ✓ ✓ ✓ ✓ ✓ ✓
competitions
Educating families ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Other Education Open-Door- Benefit: Focus Educating Day of Media Web Site Short Books
with public Day in the Nana groups with patients solidarity cell Educating films Cinema
hospital Mouskouri patients and with people patients for TV slides
(every year) family suffering Public Bus Ads
Movie Benefit: members from lectures Public
screening/ Jazz concert schizophrenia Media lectures
festival guide
165 A question of media
Roughly half of the countries also developed some form of public, cultural event.
These included plays, poetry readings and dramaturgical workshops, the joint film
project between the German and Slovak groups, as well as high school art com-
petitions in Canada and the US. Brazil, Germany, Greece, and Poland had events
corresponding to the release of the movie, A Beautiful Mind, specifically.
In Calgary, research indicated that nearly one-third of the respondents to the
post-intervention survey recalled having heard radio messages played on local
radio stations. In terms of reach of the message, roughly 300,000 people recalled
hearing these anti-stigma messages. Dr Ruth Dickson, one of the coordinators of
the programme, whose voice was featured in the commercial, reports that a year
after the messages were broadcast, patients and family members she met for the first
time would comment that they had heard the messages and remembered her name.
However, research conducted soon after the broadcast saw no measurable change
positively or negatively in attitudes. Some reasons for this might include the nega-
tive media coverage of two significant news stories running at the same time (i.e.
a subway incident in Toronto and the trial of the Unabomber in the US).
In the case of mass media, two questions remain: while messages such as those
created for television in Austria have won awards from the broadcast industry, do
messages in the mass media help change public attitudes and improve the lives of
those living with schizophrenia?
The second question is a bit more complicated and has to do with the cumulative
impact of multiple interventions in the community. How might messages work
across media? Put a different way, how can messages within a community or country
work together and achieve certain synergies?
For example, in Boulder, Colorado, to supplement the educational programmes
conducted in high schools, the Local Action Group also conducted art competitions
with students and featured winning entries on buses students took to and from
school. In the summer months, anti-stigma messages were featured in cinemas on
slides shown before the feature films.
Consumer advertising research has demonstrated a ‘multiplier effect’ – where
message effectiveness increases when multiple media is used (Smith, 2002). While
there is less research on this for social marketing efforts (in part because of the
comparatively small amount of money spent on social marketing compared to con-
sumer), it is reasonable to assume the multiplier operates for this form of marketing
communications as well.
As the earlier, anecdotal story of Dr Dickson showed and as reports from par-
ticipants in Local Action Groups indicate (e.g. participants in the film project in
Germany and Slovakia), the development of supporting mass media programmes
can be both memorable and foster a greater sense of empowerment among those
living with the illness and their families.
Can we allow targeted educational efforts to tell the whole story? How effective
can these efforts ultimately be if a teenager or law enforcement official then leaves
the presentation only to receive contrary messages in the media and hears stigma-
tizing comments from their peers? Certainly, the groundwork made by many of
these Local Action Groups to foster deeper relationships with journalists and the
media will help ensure continuity of the anti-stigma message. The work being done
by media watchdog groups and ‘stigma busters’ has also put pressure on the owners
of print and broadcast media to be attentive to the content of their publications
and programming.
Development of messages
Focus groups (described in the sidebar above) helped some of the Local Action
Groups identify key messages to communicate. Other groups also used qualitative
research to examine knowledge and attitudes of their target audiences in order
to identify what myths, misconceptions and discriminatory ideas their audience
harboured.
Communication professionals working in the field of consumer marketing know
that it is not enough to simply state a fact or competitive benefit of a product or
service. They need to answer two other questions: ‘Why should I care?’ and the call
to action, ‘What do you want me to do?’ These questions are just as important to
social marketing.
The figure above shows one of the cinema slides used in Boulder, Colorado
during the summer of 2001 as part of the anti-stigma intervention targeted to
teenagers. The primary message is that ‘Mental illness is treatable’. But this is fol-
lowed up with a simple question: ‘Why should I care?’, and the answer is: ‘The
words you use can help or hurt someone with mental illness’, accompanied a series
of common, derogatory words for those living with mental illness.
167 Development of messages
The message to teenagers presented these commonly used words for what they
were: derogatory, insults and epithets that constitute a form of discrimination
to those with mental illness. The message was crafted in such a way to present
the viewer with a choice to assist or continue hurting those with mental illness.
The cinema slides also featured a call to action, contact information of where the
teenagers might find more information on mental illness.
The following year, winners from the art competition poster contest were dis-
played on public transportation that students took to and from school, often these
were schools where presentations had been conducted on the stigma associated with
mental illness. The artwork and messages were prepared by teenagers for their peers.
Research in countries such as Spain raised concerns that brief 30- or 60-s
messages might raise more questions and concerns about schizophrenia than they
answered. Of all of the factors involved in development of anti-stigma inter-
ventions, the development of messages has some of the greatest variability. Not
only between countries considering cultural differences, but between target groups
within a single country where the differences in knowledge and attitudes may be
pronounced.
As the programme continues in other countries, the library of anti-stigma mater-
ials will continue to grow. A few elements such as the programme logo described
below have had a resonance that has translated from one language to another.
A Global Identity
The WPA Global Programme to Fight the Stigma and Discrimination because
of Schizophrenia, while being an accurate and descriptive title of the initiative
undertaken in 1996, is also a bit unwieldy. Following the first meeting in Geneva,
Switzerland, the graphics designer, Mark Jones, working with the authors of this
book developed a series of logotypes to work with several different, shorter names.
The Steering Committee of the programme reviewed the names and logotypes
and selected, Open the Doors, and the logos shown below for several reasons.
The door is a universally recognized symbol for access and admission. There are
many different types of doors: to employment, to hospitals, to the homes of both
families and friends. The experience of stigma and discrimination for those living
with the illness and their families is in some way that of doors once open, now
closed.
The active verb ‘Open’ can be read as request or even command to give access
to someone who previously has been shut out.
The brevity of the statement made it more easily translatable than other, longer
phrases.
The name and logo were successful beyond expectations. The logo has been
translated into 12 languages. It serves as a simple mnemonic for the global web
site: www.openthedoors.com. It has helped countries with limited resources to
use a theme and graphical element to easily identify the programme and the
communication materials in a professional manner and through repeated use
built greater recognition.
It has been featured on T-shirts and commemorative stamps in Greece. In
Poland and Turkey, it has been used as a rallying image for Open the Door Days.
In the case of Poland, a large door, set in the main square of Krakow, has served
as a gateway through which supporters pass to sign a petition of solidarity for
those living with schizophrenia and their families.
In a century when so much information (and some would add: disinformation)
is disseminated through so many media, a simple memorable phrase and
image can help develop greater recognition and quickly identify disparate
communication materials as part of one, unified global effort.
169 Recommendations about principles of programme development
Recommendations about principles of programme development
Over the years, learning from experience and research done in this programme
and elsewhere, the WPA has formulated the following principles which are also
recommendations to those starting new programmes.
First, the programme has to be long lasting and not a campaign. Profoundly
imbedded attitudes and social arrangements including laws cannot be expected to
change overnight. Short-lasting paroxysms of public education often leave people
who expected a great deal from a campaign more unhappy and dissatisfied after
it than before it. Long-lasting special programmes usually become impossible to
fund after a while. An anti-stigma programme not only needs to last over time, but
also has to devote some its energies to becoming a routine part of health and social
service plans and institutions.
Second, a programme against stigma must be successful if it is to retain the
loyalty of those who work on it. That 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 in size and ambition. That also means that the goals
of the programme must have local relevance.
Third, the programme must deal with the problems experienced by the people
who have the illness and their family. While the process of stigmatization is similar
in different settings, what bothers people is different. The only way to identify
what is the most bothersome – and should therefore be among the goals of the
programme – is to ask those who are most directly affected about their experi-
ence and about targets that they would see as being most important in terms of
improving their situation.
In most parts of the world, there are not systematic studies that document
consumers’ everyday problems and experiences: yet without such data, it is likely
that much energy will be spent in action that will give more satisfaction to those
who have undertaken it than those whom it was supposed to serve.
Asking consumers and their families about their problems before starting a
programme gives the programme the support of those who have been stigmatized.
It gives them an opportunity to become actively engaged in efforts that directly
affect them.
Fourth, the programme should not be an affair of the mental health service
system alone. The participation of others – representatives of different sectors of
government and of community members – is not only important because it leads to
programme strength. A broad involvement allows interventions in different walks
of life by those involved.
In addition, it brings people who are not directly concerned with mental illness in
contact with mental health service personnel, with consumers, with their families
and with others who are concerned with mental illness. The narrowing of the gap
that exist between psychiatry and the rest of medicine and society is of great
importance for the survival of the programme and for an improvement of mental
health care.
Fifth, the programme should employ those who have had the experience of
schizophrenia and their families in day-to-day functions of the programme. As
examples from the participating sites show, the active involvement of people who
have the experience of having the illness can reveal areas of need that medical pro-
fessionals might not otherwise have given the greatest priority. Just as important,
their active involvement in the programme acts against the loss of self-esteem, a loss
that represents a great obstacle and increases self-stigma in any effort to rehabilitate
a person who suffered from a mental illness.
Sixth, it has been critical to develop a model that can be easily understood and
used both in planning and evaluation of the programme. The vicious circle model
that was developed for the WPA Programme is presented above. Its advantage is
that it can be used to counteract the reluctance of those involved in supporting a
programme against stigma because its main message is that there are numerous
entry points. Potential partners in fighting stigma can be shown concrete areas
where their expertise can apply in breaking the vicious cycle and different stages of
development.
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 a component to the programme to prevent burnout.
An alternate and additional antidote employed by the WPA Programme has
been the involvement of a large number of centres in the programme. Variations in
output and energy available to move the programme along, differ among centres
and within a single centre. By having multiple centres, it becomes possible to have
some of them active and leading at a time when other sites are going through a
fallow period.
The fact that the WPA Programme had 20+ centres also contributed energy
to the programme by offering possibilities for small-scale collaboration among
groups that would otherwise have had difficulty in identifying partners among
professional groups (e.g. organizations of patients and their relatives).
Eighth, in addition to using modern technology and linking sites electroni-
cally via a web site, the WPA also invested in organizing face-to-face encounters
among participants in the programme. Heads of a site that had already completed
work served as consultants for new sites. They were invited to report on their
experiences at scientific meetings and at annual meetings of participating sites.
Newsletters and annual reports were used to record and publicize the work done
171 Reference
and to give recognition to achievements of the participants. Exhibits were devel-

oped for scientific meetings where the progress of programmes could be placed on
display.
Ninth, and finally, a programme has to have tools to help newcomers to the
programme and to facilitate the decision of those who might be hesitant in par-
ticipating. Among the materials produced to aid Local Action Groups in their
initiative:
• A volume giving guidelines and a detailed description of the different stages that
should be followed and milestones that should be met.
• A description of the work done in different sites of the programme.
• A bibliography of articles and books dealing with stigma focusing on work over
the past two decades.
• A listing of papers produced by the programme sites.
• A volume summarizing knowledge about schizophrenia and indicating issues
that are of particular importance in preventing or diminishing stigmatization.
• An inventory of posters, videos and other materials used in different countries.
• A manual for programme implementation.
• Standard curricula and syllabi for courses on how to start a programme.
Finally, the most important recommendation that can be made on the grounds of
experience from this 10-year effort is that a successful programme against stigma-
tization and its consequences can be launched in any country – small or large,
rich or poor, industrialized or developing – and the success of this work is richly
rewarding for all those involved because it gives them the certainty that they have
done something that must be done in a civic society. Furthermore, it gives people
who suffer from mental illness and those who care for them a new lease on life and
hope for a better tomorrow.
REFERENCES
Smith, A. (2002). Take a Fresh Look at Print, 2nd edn. International Federation of the Periodical
Press (FIPP) and Alan Smith.
Wolff, G., Pathare, S., Craig, T. and Leff, J. (1996). Community attitudes to mental illness. British
Journal of Psychiatry, 168(2), 183–190.
Afterword
Living in an age as thoroughly drenched in mass media as we are, it is easy to

believe that communicating a message and changing public opinion is simply a
matter of resolve. Or money. ‘Anyone can compose an advertisement.’ ‘I’ve got a
bit of a creative streak.’ ‘How hard can it be to come up with a catchy phrase or
rhyme people will remember?’
Mass media itself is largely to blame for this misconception. With so many
simple-minded messages that lodge in our minds like stones in our shoes, we
might imagine that a clever turn of phrase or dramatic image is all that it takes
to capture the attention of a massively distracted (and, in the case of mental
illness, massively indifferent) culture. But changing stigma and discrimination
because of schizophrenia demands more attention. It requires changing opinions
and attitudes. As survey after survey has shown, in country after country, commu-
nities are made aware of the need for assisted housing or job programmes for those
living with mental illness – yet the attitude remains: ‘Not in my neighbourhood,
not in my company’.
In the nearly 10 years I have worked on the WPA Global Programme against
Stigma and Discrimination because of Schizophrenia, three things have become
starkly evident to me: the enormity of the challenge facing those living with
schizophrenia, and their families and caregivers; the strength and resolve of all
of these individuals; and finally, the power of human testimony.
Working and talking with many of the Local Action Groups described in this
book, I have been struck (though not surprised) at how, early in the planning stage,
conversations turn to using expensive television and radio advertising. But sitting
in a classroom watching a young man who has recovered from schizophrenia and
a father who has lost a son to suicide, as they speak to rapt teenagers, I have seen
how powerful and effective testimonials are. Just as remarkable is the courage these
individuals show in relating their often heartbreaking experiences. Listening to the
students’ questions – sometimes direct and sometimes personal – and responses
that elicit a laugh or an awed silence, one can see how human communication does
change attitudes and behaviour.
172
173 Afterword
The collective and international effort of so many people has made this pro-
gramme unique. Journalists, government officials, police officers, medical students,
an international opera diva and others worked together with those living with
schizophrenia and their families. Through that collaboration and communica-
tion, significant changes are taking place. Families have found support where none
existed before. Judges have changed sentencing guidelines. High school students
are telling their parents about the conversation they had in school with someone
who had struggled with mental illness. Small support groups have suddenly found
themselves linked to a global network working towards the same goal: to eradicate
the stigma and discrimination because of schizophrenia.
Hugh Schulze
Chicago, US 2005
Appendix I
Volume I: Guidelines for programme
implementation
Implementation
This part of the programme document describes how to develop and implement
a local programme as part of the international effort undertaken by the World
Psychiatric Association (WPA) to combat stigma and discrimination because of
schizophrenia.
The following chart lists all the steps involved in developing, implementing and
evaluating a local programme along with a proposed timetable for completion.
Steps that have to be undertaken simultaneously are listed together at the same
point on the timetable.
It is anticipated that the implementation of the programme, as indicated in the
timetable, will take approximately 2 to 2½ years. It is, of course, recognized that
the actual time needed to complete each step may vary from site to site; however,
it is recommended that local groups complete each step in the order specified. The
timetable is divided into the following major phases:
I. Preliminary steps
II. Collection of information about programme site
III. Designing the programme
IV. Adaptation, development, pre-testing and revision of programme tools
V. Implementation and monitoring of the programme
VI. Evaluation of the programme
VII. Planning action after programme ends
175
176 Appendix I Volume 1: Guidelines for programme implementation
Check Date
Weeks Step box completed
I. PRELIMINARY STEPS
0–6 1. Site Selection ____________
7–10 2. Identification of Local Project Coordinator ____________
11–12 3. Briefing of Local Project Coordinator ____________
13–20 4. Establishment of Initial Planning Group ____________
21 5. Planning Group Meets with WPA Representative ____________
22–24 6. Production of First Draft of Local Action Plan ____________
25–28 7. Nomination of Local Action Team Members ____________
29–32 8. Invitation to Local Action Team ____________
33–34 9. First Meeting(s) of Local Action Team ____________
35–38 10. Review of Draft Action Plan ____________
II. COLLECTION OF INFORMATION ABOUT

PROGRAMME SITE
39–46 11. Development of Site Description ____________
12. Assessment of National Health/Mental Health ____________
Policies and Services
13. Review of Institutional Capabilities ____________
(including currently available mental
health services)
14. Analysis and Description of Communication ____________
Resources
15. Review of Prior and Existing Stigma-Reduction ____________
Programmes and Materials
III. DESIGNING THE PROGRAMME

47–48 16. Formulation of Long-Term Goals ____________
49–52 17. Formulation of Short-Term, Site-Specific ____________
Objectives
18. Obtain Communication Consultant ____________
19. Selection of Target Audiences ____________
53–56 20. Agreement on Potential Messages ____________
21. Selection of Media ____________
57–60 22. Preparation of Work Schedule for Overall ____________
Programme and Team Members
23. Development of an Organizational Chart ____________
24. Preparation of Budget ____________
25. Official Recognition from WPA ____________
177 Implementation
Check Date
Weeks Step box completed
IV. ADAPTATION, DEVELOPMENT,
PRE-TESTING AND REVISION
OF PROGRAMME TOOLS
60–64 26. Baseline Survey ____________
27. Selection of Available Media Materials ____________
28. Agreement on Central Theme and ____________
Programme Concepts
65–68 29. Development of Message Concepts ____________
30. Decision on Production of New Materials ____________
69–70 31. Pre-test of Message Concepts ____________
71–78 32. Development of Media Materials ____________
79–80 33. Pre-test of Materials ____________
81–84 34. Finalization of Communication Materials ____________
V. IMPLEMENTATION AND MONITORING

OF THE PROGRAMME
85–104 35. Building Local Support and Consensus Building ____________
36. Implementation of Programme by Local ____________
Action Team Members
37. Coordination of Implementation Schedules ____________
with All Team Members
38. Maintenance of Programme Diary ____________
39. Monitoring ____________
VI. EVALUATION OF THE PROGRAMME

105–120 40. Post-Test of Knowledge, Attitudes ____________
and Behaviour
41. Evaluation of Programme ____________
121–129 42. Review of Overall Outcomes ____________
VII. PLANNING ACTION AFTER

PROGRAMME ENDS
130 43. Assuring Continuation of Work After the ____________
End of the Programme
131–134 44. Documenting the Project ____________
45. Replanning for Future Development ____________
(applying the lessons)
I. Preliminary steps
There are two options for using the instructions outlined in this document. In
some cases, local groups, psychiatric societies or institutions may want to tailor
this programme to their own needs and use it without officially participating in the
WPA Programme. We request that groups wishing to use the programme in this
way inform the WPA about their efforts and provide appropriate acknowledgement
of the WPA materials while conducting their project. Groups interested in becom-
ing an official participating site in the WPA Programme should contact Professor
Norman Sartorius at the Département de Psychiatrie, 16–18, Bd de St Georges, 1205
Genève, Switzerland. Being recognized as an official participating site requires an
undertaking that:
(a) the programme steps outlined in this document will be followed;
(b) the results of the programme and the experience gained will be fully shared
with WPA Member Societies and with other participating sites;
(c) the published materials created as part of this programme should be submitted
to the WPA to become a part of the archives of this worldwide programme;
(d) whenever possible, the Local Group should consult with WPA about publica-
tions destined for very wide distribution. When more than one programme
is operating in a country, consultation between such programmes concerning
publications is obligatory;
(e) the use of the WPA programme materials and all help received from the WPA,
from donors and other participating sites will be fully acknowledged in all
presentations of the programme.
1. Site selection
The following factors should be considered in selecting a site for the programme:
• Geography: A working group’s efforts should be able to cover the area/region
under consideration. Other questions to consider: Do local media cover this
specific region? Are there times when the geographical or climatic conditions
divide the area or disrupt communication? Are media from other regions likely
to disrupt the programme?
• Language: Can materials be cost-effectively developed in a single language? Will
programme participants be able to communicate using the same language? Are
there significant minority group influences? Is the area socially cohesive?
• Political and economic situation: Is the site politically unified? Is the central
governmental ready to support the programme? How willing are local political
and financial entities to initiate and sustain the programme? Are there significant
economic variations between different parts of the area?
179 Preliminary steps
• Long-range potential: Does this effort have a chance to continue in the area and
to radiate to other sections of the country? Factors to consider in evaluating
this question include: similarity of language; acceptability of results (cultural
relevance); the existence of traditional exchanges between the programme area
and other areas of the country or other countries.
• Availability of support: Are a sufficient number of individuals likely to remain
interested in the programme over a long period? Are there institutions or
organizations likely to support the programme?
2. Identification of Local Project Coordinator

Once a site has been selected, a local coordinator for the project should be identified
who has:
• local acceptability;
• good standing in the community;
• access to an institutional base with a pre-existing infrastructure (e.g. adequate
administrative support).
This individual must be willing to commit considerable time and effort to the
programme for at least 3 years. It is also helpful if the coordinator or the institution
involved has some experience in organizing community programmes.
3. Briefing of Local Project Coordinator

The local coordinator should be briefed about the efforts of the WPA Programme
to date. The coordinator should be given materials related to the project and should
meet with members of the WPA Resource Group. The local coordinator should also
be given the opportunity to visit a site in which the programme is underway. If the
group will be officially participating in the WPA Programme, it is the responsibility
of the local coordinator to maintain liaison with WPA.
4. Establishment of Initial Planning Group

The local coordinator will convene the Initial Planning Group, which should
include a small number of individuals selected on the basis of their interest in
the programme and knowledge of the issues involved, and their access to financial
and political resources, consumer groups, and relevant local treatment organiza-
tions. This group should consist of four to five people (i.e. a number who are able
to meet over dinner or travel in the same vehicle). Ability and willingness to work
in a team is a key quality, given the long-term nature of the programme.
As soon as the Initial Planning Group is established, the Local Project Coordin-
ator will brief the group on the WPA effort in detail. The briefing should be given
to the group when they are gathered together and sufficient time should be allowed
to arrive at a common understanding of the project.
5. Planning Group Meets with WPA Representative

After the Initial Planning Group has been briefed on the experience of the project in
other countries, key issues important to success and integration with global efforts,
a meeting with members of the WPA International Resource Group (IRG) should
be organized. The WPA/IRG Representatives should plan on spending approxi-
mately 1 week’s time with the Initial Planning Group (over a 2- to 3-month period)
to ensure continuity and iterative dialogue. It is expected that each new site will
have access to two experts of the WPA/IRG.
6. Production of First Draft of Local Action Plan

After this meeting with the WPA/IRG Representatives, the Initial Planning Group
should agree on broad objectives and develop a two- to five-page outline of tentative
goals and proposed interventions including financial, budgetary and administra-
tive considerations. This document should contain a brief discussion of plans for
establishing a Local Action Team. This planning document will then be reviewed
by the WPA and future Local Action Team members.
7. Nomination of Local Action Team members

The following groups should be among those considered in selecting possible
nominees for the Local Action Team:
• patient and family advocacy groups;
• legal professionals;
• journalists;
• health care professionals;
• legislators;
• influential members of the community (e.g. business leaders, religious
leaders, etc.).
In order to best capture full community consensus, the planning group should
consider sending invitations to those who might initially be considered adversarial,
but whose ultimate involvement will be helpful.
The group should appoint a member of the group to create a programme diary
in which the step-by-step process of the group is recorded.
8. Invitation to Local Action Team

Invitations to join the Local Action Team should involve a two-part process:
• a letter of invitation from the Local Project Coordinator;
181 Collection of information about programme site
• a letter from the representative of the WPA Task Force welcoming the member
when the invitation is accepted.
The Local Action Team should also begin to develop a wider network of advisors
and consultants whom they can call on.
9. First Meeting(s) of Local Action Team

More than one meeting may be required in order to ensure the consensus and
commitment of all members to the programme and to develop a single, unified
effort. The agenda for the first meeting of the Local Action Team should include:
• opening remarks,
• introduction of participants,
• description of overall WPA stigma-reduction programme and of experiences
from other sites engaged in the programme,
• presentation of broad action plan,
• agreement on how the Local Action Group will work,
• tentative timetable of project.
10. Review of Draft Action Plan

The Local Action Team should scrutinize the first draft of the local action plan
that was developed by the Initial Planning Group. Enough time should be allowed
to discuss and agree on the meaning of the terms used, the implications of the
objectives, and the most acceptable ways of intervening in the community. The
Team should also try to identify the time required and expected outcome for each
step, and create a checklist or worksheet to track their progress. Once this draft
action plan has been agreed upon, the group should collect information necessary
to adapt the plan to the local situation.
II. Collection of information about programme site
11. Development of Site Description

What follows are broad guidelines for collecting information. This process should
involve well-informed members of the community as well as all other available
sources of data. It will often be necessary to accept estimates since collecting the data
in a systematic manner would be too time consuming. Exactly what information
should be collected will depend on its relevance to the project. Note that the
demographic information should not be averaged, but should be identified relative
to population distribution (e.g. a country’s literacy rate averages may hide import-
ant difference between urban and rural settings). It may be necessary to augment
some of the information gathered with mini-surveys, focus group discussions and
other methods of qualitative research. (See Volume I, Appendix A for a sample of
the types of information that might be collected.)
After the information is collected, a narrative should be developed. This narrative
should be an engaging profile and not simply a list of facts and estimates. It should
include reasons for the programme as well as pointers for action (e.g. for selecting
target audiences).
The site description should include:
• demographics,
• education,
• economic features,
• geography,
• social characteristics,
• cultural characteristics,
• attitudes toward people with schizophrenia.
12. Assessment of National Health/Mental Health Policies and Services

The team should assess the general health and mental health policies in the site
area as well as the health care services that are currently available to those with
schizophrenia, including the quality of inpatient facilities. The findings of this
survey may be useful in developing messages that target inequalities in the existing
health care delivery system. A sample survey of baseline information to be gathered
concerning health policies and services is provided in Volume I, Appendix B.
13. Review of Institutional Capabilities (including currently available mental health services)
During the implementation of the programme, it may be possible to involve existing
institutions. When this is undertaken, it will be important to establish who is able
and willing to speak to target audiences (e.g., an educational authority might speak
to teachers; the director of a hospital might speak to the doctors or gather them
together for instruction).
14. Analysis and Description of Communication Resources

The purpose of this step is to gather information about available media and
communication resources. A list of specific resources to consider is provided in
Appendix C to Volume I. This group should examine these resources and deter-
mine the most effective way to reach various target groups in the site area (i.e. which
media should be used). It is especially helpful to identify and try to make contact
with individuals who can be helpful to the project and who may have an interest
in it (e.g. media executives and directors; medical editors and commentators for
newspapers, and local radio and television stations).
183 Designing the programme
15. Review of Prior and Existing Stigma-Reduction Programmes and Materials

The Local Action Team should amass a full complement of materials suitable for
an intervention against stigma that are already in existence in various media (e.g.
films, posters, instructional leaflets). These materials should be sought from sources
such as community agencies, churches, the health care system, the media, non-
government organizations (NGOs), and libraries. A list of materials produced in
various countries is available upon request from Professor Norman Sartorius at the
Département de Psychiatrie, 16–18, Bd de St Georges, 1205 Genève, Switzerland.
The Local Action Team should discuss these objectives and be sure that they have
arrived at a common understanding of their meaning, and that they have found
them relevant and acceptable for their community.
III. Designing the programme
16. Formulation of Long-Term Goals

After the analysis is completed, the next step is to establish long-term goals relative
to awareness, knowledge and action. The overall objectives of the International
Programme are:
• to reduce or eliminate stigma and discrimination because of schizophrenia;
• to improve the social acceptance, community integration and quality of life of
people with schizophrenia and their families and caregivers;
• to increase the contribution of those with schizophrenia to society.
17. Formulation of Short-Term, Site-Specific Objectives

Short-term, measurable objectives that are specific to the site and relevant to target
audiences should be formulated next. These objectives, which will form the basis
for assessment of the project, should be specific, realistic, prioritized, and progress
towards them should be measurable. They should be formulated in a manner that
will allow for an evaluation of the programme and a comparison with baseline (see
Step 26).
Each step in designing the programme should be seen as part of an iterative
process in which short-term, measurable objectives relate to long-term goals and
to specific audiences, messages and media (see Figure A1).
18. Obtain Communication Consultant

It is helpful at this stage to consult someone with communication expertise who
has experience in performing surveys and planning media campaigns that are
acceptable and successful in this particular community. This individual or company
can help the team project the costs of the project (see Step 24).
Overall goals
Short-term, measurable objectives
Definition of target audiences
Determination of messages
Determination of media
Figure A1. Sequence of decisions
19. Selection of Target Audiences

The target audiences should be segmented by demographic, geographical, social,
psychological or other relevant characteristics as defined in Step 11. Examples of
possible target groups include:
• clinical officers/medical assistants;
• community leaders;
• emergency room physicians;
• employers;
• families of people suffering from schizophrenia;
• general physicians;
• landlords;
• medical students and residents;
• nurses;
• police and corrections officers;
• politicians and legislators;
• portions of the general public segmented by age, income or social class;
• psychiatrists;
• social service workers;
• students and teachers;
• traditional healers.
20. Agreement on Potential Messages

The Local Action Team should develop a list of possible messages to be delivered to
the target audiences. Messages that overlap relative to the target audiences should be
185 Designing the programme
clearly identified. In the process of identifying messages, the group should explore
the following:
• Frequent causes of stigma or discrimination (in the setting in which the
programme will take place). Some examples of the kinds of stigma and discrim-
ination that occur because of schizophrenia are given in Volume I, Appendix E.
• Reasons for not getting treatment or other help.
• Common myths and misunderstandings.
Four categories of messages should be considered:
• Messages to provide accurate information (e.g. schizophrenia is treatable).
• Messages targeted at an attitude, not a fact; these messages will have a more
emotional component (e.g. acceptance of people with schizophrenic illness).
• Messages to improve people’s skills in handling situations in which they may
encounter people with schizophrenia (e.g. situations in which they would cur-
rently be unable to cope with unusual behaviour such as acute excitement in a
public place).
• Messages intended to change behaviour (e.g. providing increased access to
emergency care or employing a person who has had schizophrenia).
21. Selection of Media

The group should review target audiences to determine which are the most appro-
priate media to communicate to them. The communication consultant (see Step
18) should be helpful in doing this. Messages should then be reviewed relative to
the medium being considered. For example, certain messages might not be appro-
priate for billboards. The team should do a pilot assessment of the effectiveness of
various media for different target audiences (see Volume I, Appendix F).
22. Preparation of Work Schedule for Overall Programme and Team Members
The work schedule should be organized to include the timing and sequence of each
proposed action and a schedule for each Local Action Team member. The work
plan should also be structured to allow flexibility in implementation. The schedule
should include personnel, materials, production schedules, fieldwork training,
equipment, travel and evaluation.
The Local Project Coordinator and Action Team should consider ways to ensure
that their initial enthusiasm and motivation are maintained. For example, they
should identify feedback mechanisms, set up regular meetings and give members
full responsibility for specific tasks so that they can feel true ownership of tasks
they consider important. Using members of the Action Team as consultants for
programmes at other sites may also help maintain motivation. Once the schedule is
developed and agreed upon it may be helpful to hold a press conference to announce
the programme to representatives of the media. Appendix G of Volume I provides
samples of materials that can be used for such a press conference. Members of
the local team should be given an opportunity to speak about the tasks they have
undertaken.
23. Development of an Organizational Chart

The organizational chart should be presented graphically, and should indicate
specific responsibilities and tasks as well as who reports to whom and how activities
will be coordinated.
24. Preparation of Budget
Step One: Zero-budget exercise

The team should assume a zero-dollar budget – that is, discuss actions that can
be taken using existing infrastructure and public communication tools (e.g. public
service announcements; inclusion in existing in-service training for emergency
room physicians; using speakers at professional meetings and conventions to reach
groups of public health professionals).
The participants themselves need to determine what their participation will be
and how they might best use their expertise and contacts in the community to help
achieve the goals of the programme.
Step Two: Determination of baseline expense

In this step, the team should determine what expenses are absolutely necessary
for initial, low-budget action items to initiate and maintain the programme.
Step Three: Determine budget

The team should then determine the price tag of other action items that are
necessary to achieve the stated goals.
Step Four: Review of budget, goals and action plan

The team should review the available budget (in relation to the timetable and
action plan) and determine how best to use available funds for leverage. For
example, money might be invested in a campaign to generate additional funds
from community action groups and local businesses. The team should also ini-
tiate fund-raising efforts. Suggestions for fund raising are provided in Volume I,
Appendix H.
25. Official Recognition from WPA

At this point, the Action Team should submit the materials they have assembled in
Steps 1–24 and a description of the way in which the project will be implemented to
187 Adaptation, development, pre-testing and revision of programme tools
the WPA, and request recognition as an official participating site in the Worldwide
Programme to Fight the Stigma and Discrimination because of Schizophrenia.
The proposal will then be considered for WPA sponsorship by the Steering
Committee (during the trial phases of the programme) and by the Executive Com-
mittee (once the programme is released). Groups who would like to implement
the programme without WPA Programme Sponsorship should also contact WPA
to acknowledge that they are using material produced by WPA and inform WPA
about the outcome of the programme.
The proposal should be sent to: Professor Norman Sartorius at the Département
de Psychiatrie, 16–18 Bd de St Georges, 1205 Genève, Switzerland.
IV. Adaptation, development, pre-testing and revision of programme tools
Many of the steps described in the following section will be undertaken at the
same time. For example, at the same time as the baseline survey is being done,
the Action Team will also be reviewing the central theme and specific objectives of
their programme in light of the results being obtained from the survey, deciding
on the specific messages that will be central to the programme, evaluating existing
media materials and determining which important messages are not included in
the existing materials.
26. Baseline Survey

After the preceding determinations have been made, the Action Team should
undertake a baseline survey to measure knowledge, attitudes and behaviour. This
survey should be done at the same time as materials are being developed. Infor-
mation gathered during this baseline measurement will help inform the media
messages and ensure that the messages that are developed are relevant for the local
community. The baseline survey will also provide data against which the outcomes
of the programme can be measured (see Step 17).
27. Selection of Available Media Materials

Before embarking on the creation of new media materials, the team should thor-
oughly examine the existing available materials gathered in Step 15 to see if their
stated messages and the media in which they were developed are appropriate for
the programme. This will eliminate duplication of efforts, build upon the successes
of previous programmes, and minimize cost.
28. Agreement on Central Theme and Programme Concepts

The Action Team should spend time at this point reviewing once again their
understanding of the central theme and specific objectives of the programme,
and considering whether the material they have found will be useful and usable in
the programme.
29. Development of Message Concepts

The team should develop message concepts consisting of preliminary illustrations,
words, phrases, and theme lines or slogans that reflect the overall strategy. These
message concepts should be part of a single, unified campaign which will include
common graphical and typographical elements, as well as a single theme that will
continually reinforce the main concepts. Examples of thematic concepts that might
be appropriate for selected target audiences are listed in Volume I, Appendix K.
Message concepts should be appropriate to the targeted audiences, relative to
their needs and level of knowledge (e.g. information on medication side effects
might not be appropriate for high school students, but would be for caregivers).
Facts should be stated briefly in an easily comprehensible style. Messages that
are ambiguous or require a great deal of explanation should be avoided. All
messages should include a call-to-action. Phone numbers, addresses and other
means of communication should be provided to allow the target audiences to
respond.
In composing message concepts, the group should also think about how it will
evaluate whether a message was effective; the formulation of outcome indicators
can thus be linked to message development.
30. Decision on Production of New Materials

The team then needs to compile a list of message concepts that are central to the
programme (see Step 29) and identify those concepts for which it has no com-
munication materials (see Step 27). The team can then decide what new materials
need to be produced and estimate the cost of such production.
31. Pre-test of Message Concepts

To achieve effective communication, it is crucial to test messages among audi-
ences for whom they are intended before production. The opinions of experts,
government officials or friends are not a sufficient guide to ensure effectiveness.
Pre-testing and subsequent, often multiple, revisions of materials are as important
to communication projects as evaluation and diagnosis are to the provision of
health and mental health services.
It is recommended that the concepts be pre-tested with groups or individuals
who are representative of the intended audiences to identify the concepts with the
most potential. Give special attention to pictures or other non-verbal materials
since these are easily misunderstood.
189 Implementation and monitoring of the programme
32. Development of Media Materials

The team should then convert concepts into complete messages and decide what
media it will use for each message (e.g. radio announcements, booklets, posters).
In selecting the media it is important to carefully balance the goals of reach
versus frequency. For example, television is an excellent medium for reaching large
numbers of people with low cost per thousand (CPM), but it is not as effective as
radio for generating greater frequency for the same cost per thousand. Professional
meetings are excellent forums for reaching very targeted audiences. The possibility
of measuring outcomes should also be considered in selecting media.
Volume I, Appendix K provides a list of factors to consider in developing media
messages.
33. Pre-test of Materials

Complete messages and materials should be pre-tested for comprehension, recall,
strong and weak points, personal relevance, and sensitive or controversial elements
with representatives of the intended audiences before final production. Programme
staff at all levels must be flexible and ready to make unanticipated changes as a result
of testing.
34. Finalization of Communication Materials

After pre-testing the materials, the group should draw up a complete production
schedule and media plan for the materials. The group should decide in what order
the materials will be released to ensure a smooth flow of communication. For
example, advertisements should not be released until follow-up materials are ready
to be distributed to those who respond.
V. Implementation and monitoring of the programme
35. Building Local Support and Consensus Building

After materials have been pre-tested and are being prepared for distribution, a
parallel effort to build consensus and support among influential members of
the community should be conducted. This consensus building has a three-fold
purpose:
• To ensure the formal approval of those who will help implement the programme
in the community.
• To involve professionals and politicians who might not have been able to par-
ticipate in the earlier planning process. These individuals should be shown clear
evidence of the results expected in the community. If this presentation is done
well, this effort should also enlist the help of new members who will assist in the
implementation of the programme.
• To leverage the assistance of politicians in moving efforts from a local to a

national level, and ultimately, to a global level.
36. Implementation of Programme by Local Action Team Members

While Step 35 is being conducted, the Local Action Team should:
• Schedule and integrate distribution of messages and materials through appro-
priate channels to maximize impact.
• Train those who will be using materials, as needed. For example, it is far prefer-
able to have teachers attend a half-day symposium conducted by an expert in
the field than to simply distribute teachers’ guides. Speakers’ bureaux oper-
ated by people with schizophrenia or their families have been successful in
communicating with groups in the community. Such groups can benefit from
training.
37. Coordination of Implementation Schedules with All Team Members

During meetings at this point, the team should decide on specific arrangements
for implementing schedules and circulating reports so that no key personnel or
group will be surprised by the appearance of any materials, and actions can be
coordinated.
38. Maintenance of Programme Diary

The programme diary (introduced in Step 7) should be updated on a regular
basis. This information will be essential during the evaluation phase and for future
implementation of the programme both nationally and as part of the knowledge
base of the global anti-stigma effort.
39. Monitoring
The group should compare project outputs with the original work plan and budget.
This will help project leaders identify and correct problems before they become
obstacles. Monitoring should cover:
• the volume of materials produced (e.g. quantities of brochures and newsletters
printed);
• the distribution in media (e.g. ensuring advertising spots are run as agreed);
• the attendance at presentations and verifying that training sessions were
conducted;
• the function of the teams, and adherence to work schedule and budget;
• the relationships with other agencies, including service providers and cooperat-
ing or hostile organizations;
• the quality of the products and process.
191 Evaluation of the programme
VI. Evaluation of the programme
40. Post-Test of Knowledge, Attitudes and Behaviour

The post-test should be formulated before the basic survey is conducted and there
should be a correspondence between the two so that the effects of the programme
can be evaluated (see Steps 16 and 17, and Volume I, Appendix D).
41. Evaluation of the Programme

Evaluation of the programme should examine the input (how much was invested),
the process (what was done, what happened), the output (the effects of the interven-
tion), the impact (effects on other areas or actions) and outcome (an overall evalu-
ation of the process and its effects in relation to the broad goals of the programme).
Be sure to consider this final checklist:
• Are you reaching your full target audiences?
• Are you reaching your target audiences with enough exposures to ensure that
your message is noted, recognized and remembered?
• What is the final budget, including media production and placement (see
Step 24)?
• Is this budget adequate to meet the originally stated goals?
An example of a stigma-reduction intervention in London provides an illustra-
tion of how these five levels of evaluation are applied. In this intervention (Wolff,
1997), neighbours of a new group home for people with mental illness in South
London were canvassed door-to-door and provided with educational materials
about mental illness, including videotapes and written materials. Social events were
also organized. This programme was then evaluated using the following criteria:
Input: Production of videotapes, written materials, discussion sessions.
Process: Did neighbours view videotapes and read brochures?
Output: Did neighbours’ fearful and rejecting attitudes decrease?
Impact: Did neighbours make friends with patients?
Outcome: Did patients have a better quality of life as a result? Did the
community accept the patients and was it satisfied with its decision?
(In fact, 13% of neighbours made friends with patients or invited
them into their homes.)
42. Review of Overall Outcomes

The overall outcome of the programme should be reviewed and the findings
described in order to plan for future activities or assist planning at other sites. The
team should recall overall and short-term objectives at this stage and examine the
programme diary as well as other written materials developed in the programme.
The Local Action Team should conduct the analysis jointly. This analysis should
include the following.
Review and analysis of each stage of programme

This step should be done to evaluate the work in each step of the programme. This
will allow the groups in other sites to learn from the experience of others.
Analysis of effect on proposed audiences and broader community

Was the intended outcome achieved? Were there other, unintended results of the
programme?
Analysis of media effectiveness

The group should evaluate the effectiveness of the media they selected. There
are many methods that can be used to assess media selection (see Volume I,
Appendix F).
Changes in the system

In addition to assessing whether the objectives have been reached, the team should
consider the following:
• Changes in the legal system. Were laws protecting the rights of psychiatric patients
enacted? Were new laws drafted?
• Changes in portrayal of people with schizophrenia in the media. Were fewer people
with schizophrenia portrayed as villains in television shows or movies? Have
there been more news stories that stress the importance of early diagnosis or the
importance of reintegrating those with schizophrenia back into society?
• Changes in employment of those with schizophrenia. Have employment figures
for those with schizophrenia increased?
• Changes in support for families. Has there been an increase in the number of
support programmes for families?
• Changes in funding. Has the amount of the government’s financial support for
mental health care increased?
• Changes in government’s administrative structure. Have there been changes in
administrative bodies (e.g. appointment of an official specifically concerned
with patient rights?
Changes in national environment

If the programme was done only in a part of the country, have there been changes
in national environment? Did news of these local efforts reach other areas of the
country and influence others on a broader scale?
193 Planning action after programme ends
Identification of strengths and weaknesses

This section should provide specific examples and hindsight wisdom.
Evaluation of skills acquired by local personnel

Has training produced long-term benefits among individuals who interact with
those with schizophrenia, such as law enforcement officials and emergency room
personnel? Would some of these individuals be useful as trainers in the future?
Examination of linkage to other mental health and health care initiatives locally and nationally
Are there ways we can disseminate successful interventions to other areas, such as
providing high school teaching materials to teachers over a broader area?
VII. Planning action after programme ends
43. Assuring continuation of work after the End of the Programme

The group should now look for additional sources of financial support both to
extend the current programme and to implement additional initiatives. It should
also attempt to enforce and support networks that have been created and provide
active participants with ideas on support in the future.
44. Documenting the Project

A meeting or press conference should be held to disseminate results and recom-
mendations to all those who participated in the project. Such an event would also
allow those who have heard of the programme’s success to learn more and become
involved in the ongoing effort.
A written summary of the process steps undertaken in the action programme and
an account of outcome should be produced, and could be written up in a manner
that will facilitate its widespread use. A specific report should also be provided to the
WPA for use in further dissemination of the model around the world. Efforts should
be made to publish the results of the programme in well-read scientific journals.
45. Replanning for Future Development (applying the lessons)

Can lessons learned from the project be applied to future stigma-reducing activ-
ities? What results of the assessment should be incorporated into the programme
design?
REFERENCE
Wolff, G. (1997). Attitudes of the media and the public. In: Leff, J., ed. Care in the Community:
Illusion or Reality? Wiley, New York.
Appendices to Volume I
Appendix A
Instructions for conducting a site survey

The purpose of the site survey is not epidemiological; rather the goal is to get
a clearer idea of the characteristics of the site so that programme efforts can be
effectively targeted. It is therefore important not to spend an excessive amount of
time on the survey nor allow it to become too detailed.
Who conducts the survey?

The Local Action Team may first want to determine which of its professional
members have experience in developing such research tools. The group may also
decide that they want to engage the services of an outside research agency. Care
should be taken that the survey is done in a way that can be repeated so that the
effectiveness of the programme can be clearly measured during the assessment
phase.
Who and what is surveyed?

There is, of course, often a trade-off between the completeness of the infor-
mation gathered, and time and budget considerations. However, the survey
should aim to give a clear picture of the community’s knowledge, attitudes and
behaviour to guide action, and allow measurement of results. The survey should
determine both:
• What is the stigma and discrimination because of schizophrenia now (see Part
II of Volume 2 for a detailed discussion of the origins and extent of stigma and
discrimination)?
• What knowledge, attitudes and behaviour should be changed? The survey should
be broader than the intended action, since the efforts of the project may have
an impact in areas unanticipated during the planning process. For example,
while teachers and high school students may be part of the identified target
audiences, our messages will also reach the parents and siblings of these students
and other members of the general public, whose behaviour may change as a
consequence.
195 Appendix A
Information that should be obtained
(a) Demographics
• Age and sex. The distribution of the population of the site by age and sex should
be ascertained, using the age groups: 0–15 years; 16–29 years; 30–65 years; 66+
years.
(b) Education
• Structure of the educational system.
• Proportion of the population in school (at all levels).
• Differences/profile of those in various levels of school.
• Methods for communicating with teachers and administrators.
• Social class distinctions in the educational system.
• Literacy rates.
(c) Economic features

• What percentage of people live under the poverty line?
• How important is the barter economy?
• What is the geographical distribution of economic resources?
• What are the main sources of income for the population?
• What is the level of unemployment?
• What percentage of the population is employed by others?
(d) Geography
• What is the geographical distribution of the community (e.g. urban versus rural
dispersion)?
• What are the climate and topography of the region and how do they affect accessi-
bility (i.e. are all areas equally accessible to health services and media year round)?
(e) Social characteristics

The team should identify opportunities for and impediments to communications,
including:
• Is the community socially cohesive?
• Are there festivals or gatherings providing opportunities for communication?
• Are there social networks in place for communication and action?
• Does the community provide support for the poor and indigent? If so, what type
of support is provided?
• Do NGOs or social action groups exist in the community?
• What consumer and family groups exist in the community?
• Are there religious and/or business organizations that can create events and
opportunities for socializing and communicating?
• What is the predominant family size/profile (e.g. single-parent households)?

• What are the patterns of drug and alcohol use in the area?
• What are the crime rates in the area? Are there significant differences between
areas (e.g. parts of the town) in these or other respects?
(f) Cultural characteristics

The team should consider questions about the cultural beliefs and customs of the
site that may affect the outcome of the programme, including:
• What are the common cultural conceptions about the causes of mental illness?
• What are the prevailing political and religious ideologies concerning causes of
mental illness?
• Who is generally believed to be responsible for giving help and support to the
disabled?
• Do traditional healers or practitioners of alternative medicine have an important
role in the treatment of mental illness?
• What are the cultural norms concerning social behaviour (e.g. is someone who
does not work and earn his own living not a fully accepted member of society, or
is there tolerance towards people who are dependent on others for their needs)?
• What is the prevailing family system – intergenerational or a preponderance of
one-generation or single-household families?
• Is the area largely industrial and urban, or rural and agricultural?
• Do rural families in the area provide care for their disabled members?
• How important a role do religion and churches play in the culture and society
of the area?
• Are the charitable activities of local churches limited to their members or do they
reach a wider population?
(g) Attitudes towards people with schizophrenia

Are results available from studies on attitudes relative to mental health in general
and schizophrenia in particular?
It may be necessary to carry out an informal mini-survey of the attitudes of
particular groups within a community. Such a survey might include:
• small focus groups;
• visits to prisons;
• discussions with legislators;
• an analysis of newspaper reporting of mental health issues over a year in widely
read journals;
• attitudes of medical students;
• an anthropological survey of folklore relative to mental health issues;
197 Appendix B
• letters to various users of psychiatric services and their relatives asking for
instances in which they have experienced discrimination.
Since attitudes may vary from one social group to another, it will be necessary to
evaluate attitudes on a group-by-group basis according to a distribution of groups
that is relevant to the particular community.
Appendix B
Survey of national health/mental health policies and services

The team needs to gather baseline data on the health and mental health policies
and services of the site. In gathering this information, the team should consult
legislators, local social services offices, hospital administrators and directors, and
representatives of the insurance industry. The main questions to be considered are:
• What are the main features of the mental health treatment system?
• Which are the responsible authorities at local, regional and national levels?
• What are the methods of financing and organizing services (i.e. who pays for
mental health care)?
• What is the insurance structure?
• Are equal benefits provided for mental health treatment as for other medical
conditions? If not, which areas are particularly unequal?
• Is disability aid available?
• Who provides formal care for persons with mental disorders (i.e. professions
involved)?
• Are there any population groups that are currently not receiving care or for
whom care is inadequate?
• How many psychiatrists practise in the area and how are they organized?
• What training in psychiatry is given: For psychiatrists? General medical students?
• Is there some in-service training in general for psychiatry?
• How many general practitioners are in the area?
• How many homes for the elderly are in the area and how are they organized?
• What is total number of beds used for psychiatric care in the community?
• How many people with schizophrenia are in institutions (including inpatient
hospital facilities, nursing homes, residential facilities, etc.)?
• Are patients with psychiatric illnesses frequently treated in facilities outside the
site area?
• What access to care do families of those with schizophrenia have?
• Is homelessness a problem? If so, are any measures taken to help the homeless?
• What services are available: Outpatient? Inpatient? Transitional? Rehabilitation?
• How are inpatient and outpatient resources allocated?

• Do institutions dealing with mental disorders provide patients with opportun-
ities for vocational training?
• Are there sheltered workshops that will employ people diagnosed as having a
mental illness or impairment? Is there a waiting list? If so, how long is that list?
• Do working relationships exist between the mental health service and other
health services? If so, how close are these alliances?
• How much do those working in the health care system know about
schizophrenia?
• What laws and legal practices regarding the care, treatment and confinement of
people with schizophrenia are used in the area?
• Is there involuntary treatment? Confinement?
• What rights/protections are in place for people with schizophrenia?
• What are the circumstances surrounding people with schizophrenia who are in
jail, prison or who have committed crimes?
• Can they (and do they) receive treatment while in penal institutions?
Appendix C
Survey of communication resources

It is important to obtain information about communication opportunities. For
example, in rural areas (if these are to be included), there may be fewer television
or radios per capita. The following information should be gathered to identify
available media and communication resources:
• names of editors and medical columnists of local newspapers;
• executives and directors of local radio and television stations;
• number and proportion of households with television;
• number and proportion of households with radios;
• media most frequently accessed by various target groups in the site area;
• radio and television networks;
• private and public channels and stations;
• provisions for broadcasting public service announcements;
• most accessible channels and stations;
• percentage of country covered by different channels/stations;
• broadcast languages used;
• proportion of local versus imported programming;
• proportion of automobiles with radios;
• videocassette recorder (VCR) penetration;
• satellite penetration;
199 Appendix D
• print media;
• national daily newspapers and their circulation;
• consumer magazines and their circulation;
• comic books sold;
• other popular media;
• attitude to foreign media;
• influence of foreign media and media from neighbouring areas.
Appendix D
Recommendations for outcome measures
Introduction
Project assessments should be undertaken in terms of realistic measurable out-
comes which are spelt out in the project objectives. These can be seen as a
continuum affecting knowledge, attitudes and behaviour of members of the target
audiences, including service providers and influential groups. Outcome assessment
steps include:
• measure and track audience’ awareness, recognition, comprehension, recall and
practice using appropriate and affordable research techniques to obtain rapid
feedback;
• analyse results in terms of specific objectives;
• make necessary revisions in project design.
Outcome measures will have to be designed locally, at least in part. The basis
for this formulation will be the listing of examples of discrimination by the Local
Action Group and the ranking of the challenges in the daily life of people living
with schizophrenia and their families. The Local Action Group will need to record
changes in the lives of these individuals that have most probably been related to
the programme.
In addition to measuring outcomes based on these indicators, it will also be
necessary to assess success in changing some of the processes underlying discrim-
ination. The list given in this appendix presents suggestions in this regard. The
Local Action Group should rate these suggestions from most to least relevant and
then assess the difficulty of obtaining the necessary information at the site.
Overall goals
• To increase knowledge and understanding of schizophrenia among the general
public, key community figures and policy-makers.
• To improve the social acceptance and community integration of people with

schizophrenia.
Recommendation
Each subcommittee of the project should develop its own overall goals and some
examples of measurable objectives. Below, we list goals and some possible objectives
for the anti-stigma group. Each subcommittee’s list of goals and objectives should
be sent to the group chairman.
Examples of measurable goals

To increase knowledge among the general public concerning the causes of schizophrenia.
Measure: Knowledge survey of the general public.
To increase the awareness of the general public that schizophrenia can be episodic and
treatable.
Measure: Telephone survey of the general public.
To decrease by X% the number of people who perceive people with schizophrenia as
violent.
Measure: Survey of the general public.
To change judicial attitudes regarding people with schizophrenia and law enforcement.
Measure: Attitude survey of police, attorneys and judges.
To increase the number of decision-makers using person-first language (referring to
‘people with schizophrenia’).
Measure: Text analysis of policy documents and articles in the media.
To increase education in high schools about schizophrenia.
Measure: Survey of recent teaching practice of high school health and science
teachers. Knowledge survey of high school students.
To increase discussion of schizophrenia among the general public.
Measure: Content analysis of popular media articles.
To increase the access of people with schizophrenia to social resources.
Measure: Survey of social agencies (subsidized housing, vocational services, etc.)
to assess proportion of recipients who are people with schizophrenia.
To reduce the number of people with schizophrenia in jail.
Measure: Survey of local jail population.
To increase the general public’s active tolerance for people with schizophrenia.
Measure: Survey of sample of people with schizophrenia to assess: pro-
portion employed, length of residence in current accommodation and the
201 Appendix E
number of work schemes that bring patients into contact with the general
public.
To develop a local anti-stigma advocacy (‘stigma-busters’) group at each site.

Measures: A stigma-buster group has been established; has been in existence for
6 months and has achieved a success.
To establish a consumer speakers’ bureau at each site.

Measures: A speakers’ bureau has been established; has been in existence for
6 months and has given X presentations.
To increase by X% the number of employers who hire people with schizophrenia.

Measure: Employer survey.
Appendix E
Examples of the kinds of stigma and discrimination that occur because of schizophrenia
Stigma and discrimination because of schizophrenia can take many forms. It is
important to obtain local accounts in each of the programme sites of ways in
which stigma is expressed, as well as the ways and places in which discrimination
occurred.
In producing this account, the Local Action Group should rely upon information
obtained from patients and their relatives. Human Rights activists should also be
consulted.
Health care workers (including psychiatrists, family physicians and social work-
ers) should also be consulted, particularly those who practice in the community and
are in regular contact with patients. Observations from social scientists should be
taken into account, particularly if they have been active in this area (e.g. dealing with
the plight of the homeless). Theoretical and overly general formulations should
be avoided and an inductive method, beginning with the personal experiences of
those most concerned, is recommended.
In considering stigma and discrimination, the Local Action Group should
be aware that positive as well as negative stigma and discrimination should be
recorded. An example of positive discrimination might be the protection of people
with schizophrenia from losing their employment when an industrial plant is
downsized.
Discrimination based on fact should be distinguished from discrimination based
on prejudice and various false beliefs.
Appendix F
Advantages and disadvantages of various media
Slides/binders
Advantages
• Relatively low cost.
• User familiarity with the technology.
Disadvantages
• Dependent on slide projector and presentation environment.
• Less uniformity of presentation.
• Dependent on availability of knowledgeable presenter.
Brochures (16 to 24 pages)

Advantages
• Can be shipped virtually anywhere.
• Low-to-moderate cost.
Disadvantages
• Limited amount of information content.
• Language dependent.
• Likely to be disregarded unless content is very distinctive.
Pamphlets/books (36+ pages)

Advantages
• Comprehensive information with more space for case histories.
• Access–quality publication will be retained on bookshelf.
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203 Appendix F
Disadvantages
• One person, one book.
• Static presentation.
Comic books
Advantages
• Popular and widely read in some countries.
• Of particular interest with larger populations of lower socio-economic
classes.
Disadvantages
• A challenge to produce so that the message is creatively and effectively embedded
in a popular story.
• Culture specific, idiom dependent.
Audiotapes
Advantages
• The verisimilitude and emotional power of audio.
• A controlled presentation.
Disadvantages
• No visuals (or limited to explanatory companion brochure).
• Linear format, does not lend itself to quick access.
Films/Videos
Advantages
• High visual content for even greater verisimilitude and emotional impact.
• Higher learning with greater sense stimulus.
Disadvantages
• Dependent on variety of videotape technologies.
• Language barriers (overdubbing or subtitle).
Multimedia
Advantages
• Near encyclopedic content with easy access to necessary information.
• Synergies of video, text and sound with multiple language capability.
• Active participation versus passive learning.
Disadvantages
• Dependent on personal computer availability.
• Relatively higher cost for fully realized video input.
Web sites
Advantages
• Zero postage for distribution of materials.
• Readily lends itself to constant updating and active data gathering.
Disadvantages
• Dependent on computer and phone lines.
• Information content may be limited.
• Reaches a limited group of the population.
Teleconferences
Advantages
• A national or worldwide event.
• High visibility for conference participants.
Disadvantages
• A one-time event.
• Highly dependent on logistics for presenters and viewers.
• Logistical problems of immediate translation.
Media matrix
Reach Information Language Retention/ Capital

content dependence repetition investment
Slides/binders Moderate Low to Moderate Moderate Low Low
Brochures High Moderate Moderate Moderate Low to Moderate
Pamphlets/ High High Low to Moderate Moderate to High Moderate to High
books
Audiotapes Moderate Moderate Moderate Low to Moderate Moderate
Films Videos Moderate Moderate Moderate Moderate Moderate to High
Multimedia Moderate High Moderate High Moderate to High
Web sites Moderate Moderate Moderate to High Moderate to High Moderate
Teleconferences Low Low Moderate to High Low High
Reach is defined as the number of people who will receive and be able to use the
materials based on technological (not language) considerations.
Information content is defined as the amount of information that will ‘fit’ in a
particular medium.
205 Appendix F
Language dependence is defined as the degree to which the programme depends

on a written or spoken language.
Retention/repetition is defined as the ability to re-visit the information and the
ability to retrieve a particular piece of information (e.g. the linear nature of audio-
tapes is more limited than printed material in which one can ‘turn to’ a particular
piece of information).
In addition to this overview of media, media buying agencies can also supply
comparative information that will better enable you to evaluate particular media
for a particular target group.
It will be important to connect local communication experts and discuss the
above table to decide on the media to be used. Their comments as well as experience
with media on the local level should be recorded. Some forms of communication
are not included in this chart. These should be added wherever possible (e.g. comic
books, folk songs, theatres, puppet theatres, plays and playactings.)
The variety of measures that can be used to evaluate communication effective-
ness is almost as great as the number of communication firms who conduct such
evaluations. We give just a few examples of the kinds of measures that can be used
to evaluate one medium in comparison with others. Certain qualitative measures
can take into consideration the media vehicle’s audience size adjusted by a scale of
values reflecting:
• audience’ characteristics in relation to a segmental (targeted) strategy;

• intermedia differences;
• intramedia differences;
• advertising unit differences.
Gench (1970) defined five factors to consider in measuring the effectiveness of a

media vehicle:
1 Editorial climate: the authority or believability of the publication.

2 Message fit: the appropriateness of the message to the medium and target
audiences.
3 Technical capabilities: a qualitative measure of a particular vehicle in comparison
with others in the medium (e.g. clarity of the frequency modulation (FM) over
the amplitude modulation (AM) signal in certain geographical regions).
4 Competing messages: presence of other advertisements for the same or similar
advertisers that may add to confusion and message clutter.
5 Target population receptiveness: Gench comments ‘The social context in which
a media vehicle is viewed or read can make a difference. Some communication
may be intended to reach the entire family as a group. Thus, evening television
would be more desirable than daytime television, magazines or newspapers.’
REFERENCE – APPENDIX F
Gench, D.H. (1970). Media factors: a review article. Journal of Marketing Research, 7, 216–225.
Appendix G
Creating a press event
1. News conferences
The news conference is an opportunity to provide timely, relevant and important
information to the media. It is important that your message or event be of major
importance. A mistake many communications teams make is the overuse of the
news conference, which will only result in journalists and media representatives
coming to view subsequent press events (which may, in fact, be more newsworthy)
with scepticism.
Speakers should be chosen carefully. Two speakers will provide a focus for
attendees, with other sources available to the press for comment after the confer-
ence. A notable person with credentials upon whom the press can rely for reliable
information will increase attendance and coverage.
The conference should be limited to 30–40 min with at least 20 min allotted for
questions. Speakers should be available to the press for individual comment after
the conference itself.
The following guidelines based on experience in the US, Canada and some
European countries may help you organize a successful press conference:
• Schedule your news conference for mid-morning. This allows reporters time to
meet afternoon deadlines.
• Choose a familiar site that is centrally located in your community to hold your
conference. Or choose a prestigious setting that is relevant to your event/message.
• A Tuesday, Wednesday or Thursday is the best day to schedule a press conference.
• If your news conference allows for advance notice to the press, send out media
advisories 1 week prior to the event. Always include the address of a contact
person and a phone number for more information.
• If your news conference is being held in response to a breaking event or news,
your issue will be of major significance to the media. If you do not receive
a significant amount of interest from the media (in the form of some verbal
acknowledgement from representatives of both print and broadcast media), you
should reconsider holding the press event.
• Use your local news advisory services. In many countries, the wire services run
listings of news events so that the press can determine what to cover. Find out the
207 Appendix G
deadline for inclusion in the Daybook and send written notice to the Daybook
Editor prior to the deadline. (A Daybook is a document that is updated daily
and lists new stories that are being considered.)
• Hire a photographer to cover the event. Many local publications will be unable to
send a photographer, so your ability to provide the reporter with a photograph
will improve the reporting and your relationship with the reporter.
• Provide press kits. Press kits should include fact sheets and background infor-
mation about schizophrenia. Also provide a copy of the prepared remarks of the
speakers. Include biographies of your speakers in the press kits.
• Prepare your speakers for dealing with the media. Give each speaker a time limit
for his or her remarks. Hold a mock press conference to practice and ask the
speakers questions you believe are likely to arise. Rehearsal is very important.
Schedule time for it.
• Make follow-up phone calls to the press (1–2 days in advance for newspaper
editors, 1 day for radio news directors and the same day for television assignment
editors), since television schedules change frequently.
• The venue for the press conference should be large enough to accommodate all
press and camera crews. The room should have good lighting, even though most
camera crews will bring additional lights. Position the podium or head table
to allow an unobstructed view from anywhere in the room. Chairs should be
arranged to provide the media with a clear view of the podium or head table.
Supply a remote box for multiple sound output for recording devices. Arrive at
the site at least 1 h in advance to make sure every last detail has been arranged.
• Have a press registration table complete with sign-in sheets and press kits, which
will allow you to survey the media attendance for the conference, further cultivate
your relationships with the press, and enhance your ability to follow up with
reporters after the conference.
• Provide refreshments for the press, especially if the conference is mid-morning.
• Start your news conference on time and end it when scheduled. Reporters have
very tight schedules and you can damage your reputation with representatives
of the press by not being punctual or letting your speakers talk too long.
Note: As mentioned above, if you cannot gather enough attendees together for
the press conference or if the announcement is an update of information previously
released, you may want to send a press kit to appropriate editors in the print and
broadcast media.
The press kit

Press kits should be compiled for specific events or to provide background infor-
mation about schizophrenia and the relevance of the announcement to be made.
Prepare extra kits and keep them on file to send to reporters who request additional
information. (A sample is included in the media toolkit and a list of contents is
given below.) The press kits should include:
• news release (for specific event);
• fact sheets on schizophrenia (usually one to two pages): focus on key points
concerning the personal and social impact of the stigma of schizophrenia;
• the programme’s goals and objectives;
• background information on the WPA and the organizations involved in your
local effort;
• brochures, newsletters and other outreach materials;
• questions and answers document to answer some of the commonly asked
questions about schizophrenia and the stigma surrounding it;
• resource materials might also include articles about schizophrenia, information
on your Local Action Group or speeches given by someone in your group.
The media kit folder is usually a two-pocket folder, which has the news release on
the right-hand side to ensure visibility. All materials should carry a date of printing
at the bottom of the last page to avoid old releases being picked up and rerun.
The news release

The news release is intended to focus on the key aspects of your story. It should
be limited to two or three double-spaced pages. Other documentation will provide
technical or additional reference materials; the news release should be very much
targeted to the announcement of the day.
When reviewing a news release, editors treat it as an inverted pyramid; generally
they begin cutting from the bottom up to fit the information into the format.
Therefore, the first paragraph should contain the main ideas of the story, with each
subsequent paragraph elaborating on the key information in the first paragraph.
Content of the release

It is important to try to answer the following six basic questions as well as providing
a news hook (with some local relevance to the reader) in the first paragraph:
• WHO (is involved, or to whom did it happen).
• WHAT (was said or done; or what is going to happen).
• WHEN (did or will the story or event take place).
• WHERE (did it happen, where will it take place).
• WHY (did it happen or will it happen).
• HOW (did it happen or will it happen).
209 Appendix H
Tips for writing the news release

• Always type your release, double-spaced.
• In the upper left-hand side of the release, type ‘FOR IMMEDIATE RELEASE’;
or if the release time and date is specific, indicate the release date.
• Keep the headline of the release short (10 words or less) and TYPE IT IN ALL
UPPER CASE. The headline should let the reader know exactly what the press
release is about and its relevance/importance to the reader.
• The body of the text of the release should begin with the city where the event or
conference is being held (e.g. Geneva, 2 January, 19__).
• Limit your release to no more than four pages. Number each page. At the bottom
of each page (if additional ages are listed), type ‘MORE’. On the last page of the
release, type ‘###’ or ‘-30-’ to indicate the end.
• Do not split a sentence between pages.
• Include approved quotes from authorities on the issue in your release.
• If you use abbreviations or acronyms of any kind, be sure to spell out the full
name, title or phrase (e.g. World Psychiatric Association [WPA]).
• Your press release should end with the name and phone number of a key contact
person who can answer questions.
Follow-up
Whether you have held a full news conference or have sent out a press kit to editors
and reporters, follow-up is key. Out of respect for their time, keep your follow-up
call brief. Ask if any more information is needed and what kind of coverage may
be expected.
Appendix H
Fund-raising guidelines
Obtaining funding for printed materials, seminars and other expenditures in a
public communication campaign is a challenge. Ultimately, proper funding can
make or break a programme.
Several guidelines are important to keep in mind as you develop a fund-raising
programme:
• Develop a clearly defined goal. The more specific the request (e.g. raising money
for a specific seminar or educational programme), the more likely you are to
receive a positive response.
• Set a specific monetary goal. Estimate all costs in your programme so that you
can give potential donors a clear understanding of your ultimate target.
• Identify in-house resources. Are there members of your Local Advisory Group
who have access to funding?
• Develop a list of potential outside resources.
• Consider the following options (depending on local restrictions in the donation
of money, your programme options may be more limited than those listed
below):
– Annual campaigns, so that potential donors can plan their giving in advance.
– Planned giving programmes. This term is used to describe pre-planned forms
of donation such as wills and bequests (often as a per cent of the estate of the
donor).
– Pooled income funds (a trust agreement in which money is transferred to the
organization’s pooled income fund directly).
– Trusts: some individuals may choose to make your programme the beneficiary
of a life insurance policy which will transfer funds on the owner’s death.
• Your programme may use some of the following fund-raising strategies:
– Personal solicitations: members of your group may approach individuals on a
one-on-one basis.
– Direct mail: this will allow you to reach a larger number of potential donors,
although less personally. (The fund-raising letter is particularly important. It
should get directly to the point and present a clear plan of action.)
– Telemarketing: like direct mail, this allows you to reach a broad number of peo-
ple with the added benefit of a phone conversation. However, it may be more
difficult to reach people as directly as mail. Calls will also need to be repeated.
– Special sponsored events: these can include awards programmes or dinners
that might include a ‘silent auction’ for donated materials.
The solicitation package

Material should be prepared for individuals considering a contribution. The
package should clearly explain:
• the goals of your fund-raising campaign;
• why your programme is important;
• the specific benefit the donor will receive (e.g. publicity);
• the effectiveness of your organization;
• several options for support or participation;
• the long-term value of the programme.
Follow these guidelines for writing the solicitation letter:
• Keep the letter to one page.
• Use clear concise language.
211 Appendix I
• Use letterhead with the organization’s main phone number.

• Address letters to the appropriate person. Do not write ‘Dear Sir or Madam’.
• Capture the reader’s attention in the first sentence. State project goals in the first
paragraph.
• Outline only the highlights of your request. Details may be covered in the
proposal itself or discussed at a future meeting.
• Show how your programme addresses key concerns for the reader.
Along with the letter, you should provide: a prospectus summarizing the project,
support and informational materials on schizophrenia, and a donor request card
the donor can fill out and return.
Corporate recognition
Corporations and foundations often respond well when their company achieves
greater visibility from the donation. A ‘Corporate Giving Plan’ establishes tiers of
potential donations and might be constructed this way:
• Corporate Sponsor: $15,000 and higher.
• Corporate Benefactor: $10,000–15,000.
• Corporate Patron: $5000–10,000.
• Corporate Donor: $2500–5000.
• Corporate Contributor: up to $2500.
Appendix I
Baseline survey of knowledge, attitudes and behaviours

A variety of methods can be used to obtain information about knowledge and
attitudes as well as some reports on behaviour. The three cheapest methods are mail
surveys, telephone interviews and focus group interviews. Other types of surveys,
such as house-to-house surveys with personal interviews, are less economically
feasible. The following matrix provides an overview of the general advantages and
disadvantages of different research methods:
Measurement Mail survey Telephone Focus group

consideration interview
Population Allows you to approach Allows you to reach a For smaller, more
larger numbers of people broader population well-defined groups.
but with a one-time but often requires
opportunity for response. repeated call-backs.
(continued)
Measurement Mail survey Telephone Focus group

consideration interview
Biased Can be segmented Allows for random Some small group bias.
response∗ geographically. dialling.
Item Must be carefully Interviewers can clarify Generally open-ended

construction worded, since there questions; open-ended to facilitate open
is no opportunity questions are allowed. discussion.
to clarify responses
to questions.
Costs Low per-person cost. Modest per-person cost. Higher per-person cost.
Speed Responses arrive within Dependent on Responses are

1–2 weeks; analysis of number of interviewers; immediate, but
written questionnaires analysis will take analysis of qualitative
takes additional time. additional time. data can take
considerable time.
∗ Biasedresponse refers to how data might be segmented (perhaps a positive characteristic for
your research) or skewed (the negative, limiting nature of the methods). For example, focus
groups allow for more open qualitative exploration of issues but may be biased by
interpersonal dynamics between participants.
Appendix J
Thematic concepts and sample messages

The team will need to select a single, unified theme for the programme, as well
as specific messages related to that theme that target selected audiences. In this
appendix, we present a number of thematic concepts that might be chosen as well
as samples of targeted messages related to those concepts. Here are some examples:
Theme: Schizophrenia. The one thing IS it is treatable.
Message to general practitioners: Effective treatments for schizophrenia are
available that have far fewer side effects than older medications.
Messages to teachers:
• Schizophrenia can be treated effectively. People can regain their ability to
function in society.
• Schizophrenia is a biological illness that can be treated.
• Students need to learn to be tolerant and helpful towards those who are different.
213 Appendix K
• Students should be taught not to laugh at or ridicule those who are different.
Theme: Schizophrenia. Open the Doors.
• Sample messages to police:
• Bizarre or abnormal behaviour may be a symptom of mental illness.
• When you see someone who is behaving very oddly, consider having a doctor
evaluate them or take them to the emergency room, but not to jail.
Theme: Schizophrenia. Look closer; you’ll see the human being.
Appendix K
Factors to consider in developing media messages

Once the team has decided what messages need to be communicated to the target
audiences, a media plan can be developed to determine the most effective media
to select to achieve the stated goals. The following general measures can be used to
select one medium over another (Sissors, 1997):
• optimum number of prospects;
• optimum amount of frequency;
• lowest cost per thousand (CPM);
• minimum waste (non-prospects);
• within the specified budget.
Traditional measurements of a particular vehicle’s effectiveness (e.g. gross rating
points or Neilsen ratings for television) can be helpful. However, when messages
are being placed on a pro-bono or discounted rate, trade-offs are to be expected.
For example, print ads may appear at the back of a magazine or television ads may
be aired late in the evening well after prime time viewing hours. While the cost
is attractive, your message will reach a more limited viewership. For example of
messages developed for the anti-stigma campaign, consult the Media Toolkit available
from the WPA.
In creating the actual messages, the team should consider some of the maxims
and tips that copywriters and graphical designers have developed for the creation
of ads. For example, Russell and Lane (1996) outlined the following principles for
creating effective headlines in print advertising:
• use short simple words (usually no more than 10 words);
• include an invitation to the prospect to become involved;
• use an action verb;
• give enough information in the headline so that the prospect who reads it learns
something.
Russell and Lane give the following guidelines for reviewing advertising copy:
• Develop a copy strategy: what to say and to whom.
• Does the message position the problem and its solution clearly?
• Does the message promise a benefit for the prospect?
• Does the message tie to the overall strategy?
• How strong is the execution of the ‘big’ idea? Is it bold and unexpected? Is it
visually arresting? Is it single-minded?
Kaatz (1995) presents a checklist that the team can use to review the messages it
has developed:
• Have you learnt everything you can about the problem and solution, or service,
offered?
• Have you clearly defined your target audiences and their needs?
• Have you written to your target audiences as you would to a real-life person and
not a research statistic?
• Have you promised a real benefit and backed it up with a reason why the person
will receive this benefit?
• Have you recognized that the prospect’s time is valuable by getting right to the
point?
• Have you made certain that what you said relates to your unique challenge and
cannot be easily transferred to another?
• Have you avoided saying more than necessary?
• Have you written with excitement and enthusiasm so your prospects will say:
‘They really believe in what they are saying’?
• Have you rewarded your prospect by making it easy and fun to take time with
your message?
• Have you remembered that the message is the centre of the advertisement, and
not the advertisement itself?
REFERENCES – APPENDIX K
Kaatz, R. (1995). Advertising and Marketing Checklists, 2nd edn. NTC Business Books.
Russell, J., Lane, W.R. (1996). Kleppner’s Advertising Procedure, 13th edn. Prentice Hall Press,
pp. 516–517.
Sissors, J. (1997). Advertising Media Planning. NTC Business Books.
Appendix II
Decreasing stigma
(Note: The following is an excerpt from Volume II of the programme
materials. The full volume is available electronically and can be
downloaded at www.openthedoors.com/english/01-02.html)
What are stigma, prejudice, and discrimination?

The word ‘stigma’ is of Greek origin and means ‘to pierce, to make a hole.’ The
word was also used, however, to mean branding a criminal with a hot iron to mark
infamy. In the Anatomy of Melancholy, Burton spoke of being ‘stigmatized with hot
iron.’ It was in the late middle ages that the word came to mean the public defaming
and branding of a criminal so that all could recognize him. Other meanings of the
word, in particular with reference to stigmata (wounds similar to those of Christ
indicating that a person has lived a life of extraordinary sanctity), have gradually
disappeared. In more recent years, stigma has been used especially to indicate that
certain diagnoses (e.g. tuberculosis, cancer and mental illness) awaken prejudice
against persons so diagnosed.
Prejudice is an attitude reflecting the readiness of people to act in a positive
or negative way towards the object of the prejudice without examining whether
there is any justification for such behaviour. There are numerous prerequisites for
prejudice to develop. Several of the most important are:
• Recognition of the object of prejudice: for example, prejudice is awakened once
the individual admits that he has a mental disorder or when extra pyramidal
side-effects make it clear to others that he has been receiving anti-psychotic
medication.
• Social acceptance of the prejudice: there is an absence of any strong reaction by
others to the prejudice.
• Lack of personal knowledge about the object of prejudice: for example, serving
in the same military unit with people from a different race can help reduce
prejudice against those belonging to that racial group.
The literature concerning breaking down prejudice indicates that there are numer-
ous methods of eliminating or weakening prejudice, but that none of them is easy
or quick.
215
216 Appendix II Decreasing stigma
Discrimination is a particularly negative consequence of stigma and prejudice.

It means that individuals or groups in a society deprive others of rights or ben-
efits because of stigma and prejudice. For example, those given a diagnosis of
schizophrenia are often denied the rights or benefits they would have if they were
not given such a diagnosis. Discrimination because of schizophrenia is expressed
in numerous ways, including lack of parity in reimbursement for care, injustice
in legislation, unwillingness to employ people with schizophrenia and refusal to
allow someone with a mental disorder entry into a social group (e.g. by way of
marriage). In terms of priorities, there is no doubt that discrimination should be
the first target of action – not only because it is the most direct form of harm
inflicted on those with mental illness, but also because the reducing discrimination
(e.g. in the laws) in turn helps reduce stigma and consequent prejudice.
What is the stigma because of schizophrenia?

The general public and even health professionals tend to hold a stereo-typed image
of those with schizophrenia. This image usually involves some or all of the following
misconceptions:
• Nobody recovers from schizophrenia.
• Schizophrenia is an untreatable disease.
• People with schizophrenia are usually violent and dangerous.
• People with schizophrenia are likely to infect others with their madness.
• People with schizophrenia are lazy and unreliable.
• Schizophrenia is the result of a deliberate weakness of will and character (‘the
person could snap out of it if he wanted’).
• Everything people with schizophrenia say is nonsense.
• People with schizophrenia cannot reliably report the effects of treatment or other
things that happen to them.
• People with schizophrenia are completely unable to make rational decisions
about their own lives (e.g. where to live).
• People with schizophrenia are unpredictable.
• People with schizophrenia cannot work.
• People with schizophrenia get progressively sicker all their lives.
• Schizophrenia is the parents’ fault.
The stigma that attaches to schizophrenia extends beyond the individual with
the illness to encompass everything and everyone associated with him or her.
This includes the medications and other treatments that maybe used to control
symptoms, family members (who are often wrongly considered to have caused
the illness), other caregivers, health professionals who care for those with
217 What is the stigma because of schizophrenia?
schizophrenia, and even the hospitals and other institutions in which those with
schizophrenia are treated.
Extent of the stigma

It is clear that people with mental illness are highly stigmatized in the West. Branded
as ‘psychos’ in popular parlance, they encounter discrimination in housing and
employment (Miller and Dawson, 1965) and generate fear that they are dan-
gerous. Citizens fight to exclude treatment facilities and living quarters for the
mentally ill from residential neighbourhoods. According to a 1990 survey of the
American public, the ‘not in my backyard’ phenomenon is a widespread obstacle to
the community integration of people with mental illness (Robert Wood Johnson
Foundation, 1990). The status afforded the mentally ill is the very lowest – lower
than that of ex-convicts or the developmentally disabled (Tringo, 1970). According
to one US survey, even after 5 years of normal living and hard work, an ex-mental
patient is rated as less acceptable than an ex-convict (Lamy, 1966).
The agencies serving the mentally ill are tainted by association and mental health
professionals themselves sometimes hold attitudes towards mental patients that are
similar to those of the general public; they may even be more rejecting. In one study,
mental hospital staff were considerably less likely than members of the public to
take the trouble to mail a sealed, addressed letter which they believed to have been
accidentally lost by a mental hospital patient (Page, 1980).
Tragically, people with mental illness themselves accept the stereotype of their
own condition. Young patients in rural Ireland viewed ‘spending time in the
“madhouse” … as a permanent “fall from grace” similar to a loss of virginity’
(Scheper-Hughes, 1979; p. 89). A number of studies have shown that mental
patients are as negative in their opinions of mental illness as the general public
(Giovannoni and Ullman, 1963; Manis et al., 1963; Crumpton et al., 1967). Some
reports, indeed, indicate that mental patients are more rejecting of the mentally ill
than are family members or hospital staff (Bentinck, 1967; Swanson and Spitzer,
1970).
In a comparison of attitudes towards the mentally ill at sites in four European
countries: (people in Athens) Greece and (Naples) Italy, were more rejecting than
those in Britain and Sweden. Most of the respondents in Greece and Italy felt that
‘lack of will power’ was a primary cause of mental illness and believed that the
mentally ill were ‘far more dangerous than most suppose’ (Hall et al., 1991).
Some individual factors are known to moderate stigma and improve public tol-
erance of the mentally ill. Younger and better educated people are usually more
tolerant (Rabkin, 1980; Brockington et al., 1993; Wolff, 1997). Prior contact with
someone who suffers from mental illness decreases stigma and fear of dangerous-
ness, as does knowledge of the person’s living situation (Penn et al., 1994). Those
who do not perceive the mentally ill as violent are relatively tolerant (Link et al.,
1987; Penn et al., 1994). Residential facilities for the mentally ill are better accepted
in downtown, transient districts with low social cohesion, while they are less well
accepted in single-family neighbourhoods (Trute and Segal, 1976).
A survey in England, Scotland and Wales (MORI, 1997) seemed to indicate an
improvement in public attitudes towards schizophrenia, at least with regard to
treatment possibilities and integration into the community. In this study, 59%
of those surveyed felt that schizophrenia can be treated effectively while only 10%
disagreed; only 18% said that they would not be willing to work alongside someone
with schizophrenia while 54% disagreed; 12% felt that people with schizophrenia
should live in institutions for the mentally ill, not in neighbourhood areas, while
64% disagreed; and, finally, 72% felt that, with careful support and appropriate
treatment with modern medicines, people with schizophrenia can live successfully
in the community. However, when questions about more personal issues were
posed, the public’s tolerance appears to change to a more neutral or negative
feeling, with only 13% saying they would be happy if their son or daughter was
going out with someone with schizophrenia, while 47% disagreed.
People with schizophrenia are often viewed differently in

developing countries
A number of factors in developing countries result in greater tolerance, and

continued family and community support for those with serious mental illness.
In developing countries, persons with mental illness and schizophrenia have
traditionally lived in the community and with their own families. In addition,
large-scale institutionalization has not been a part of the mental health care system
in these countries. Other factors contributing to greater tolerance and support are:
• the rural agrarian nature of the society;
• strong family system with filial affiliation;
• models for explaining the cause of the illness that are external (e.g. spirits) and
are shared by community members;
• reversibility of behaviour including symptoms.
However, this situation could change with increasing urbanization, the influence
of mass media, and the breakdown of family structure.
A number of studies in the 1970s and earlier found that a lower level of stigma
was attached to mental disorder in developing countries and that those with mental
illness were often better tolerated by families and were the object of less criticism
and hostility. Among the Formosan tribes-men studied by Rin and Lin (1962),
mental illness was free of stigma. Sinhalese families freely refer to their psychotic
219 People with schizophrenia
family members as pissu (crazy) and show no shame about it; tuberculosis in
Sri Lanka was more stigmatizing than mental illness (Waxler, 1977).
The lower level of stigma in parts of the developing world may be a result of
different folk-diagnostic practices. Throughout the non-industrial world, the fea-
tures of psychosis are likely to be given a supernatural explanation (e.g. people
with these symptoms may be considered the victims of witchcraft, shamans or
spiritualists (Warner, 1974)). When urban and rural Yoruba with no formal educa-
tion from Abeokuta in Nigeria were asked their opinions about profiles of mentally
ill people, only 40% of those questioned thought the person described with symp-
toms of paranoid schizophrenia was mentally ill (Erinosho and Ayonrinde 1981),
whereas nearly all Americans labelled the subject of this vignette as mentally ill
(D’Arcy and Brockman, 1976). Only a fifth of uneducated Yorubans considered
the person described with symptoms of simple schizophrenia to be mentally ill,
versus three-quarters of American respondents (D’Arcy and Brockman, 1976).
A third of the uneducated Yoruba would have been willing to marry the person
with paranoid schizophrenia and more than half would have married the per-
son with simple schizophrenia. However, when skilled workers from the area of
Benin in mid-western Nigeria were asked their opinions about someone specific-
ally labelled a ‘nervous or mad person,’ 16% thought that all such people should
be shot and 31% believed that they should be expelled from the country. These
educated Nigerians conceived of mad people as ‘senseless, unkempt, aggressive and
irresponsible’ (Binitie, 1970).
The World Health Organization (WHO) multicentre study in four developing
countries studied community attitudes using seven case vignettes in Columbia,
India, Philippines and Sudan. This study found that the community differentiated
the different disorders in terms of severity, treatability, marriagiability and desir-
ability as neighbours (Wig et al., 1980). The respondents placed greater emphasis on
external behaviour rather than internal symptoms experienced by the individual.
Indian mental health professionals have conducted many studies on the attitude
of the general public towards mental illness. Again, earlier studies found higher
levels of tolerance than in developed countries. A survey of Indian professionals
(Sathyavathi et al., 1971) found that they were willing to interact with the men-
tally ill in various aspects of life and would not feel the need to conceal the illness
of someone in their own family. Similarly, most adults in Vellore, India, when
interviewed, were sympathetic towards mental patients and accepted modern treat-
ment methods available in hospital (Verghese and Beig, 1974). The respondents
expressed optimism about the outcome of treatment, especially if provided dearly
in the course of the illness. However, nearly two-thirds of the respondents felt that
the cure could be only partial and also opposed marital alliances with families in
which there is a history of mental illness.
The authors of a WHO follow-up study of schizophrenia suggest that one of the
factors contributing to the good outcome from schizophrenia in Cali, Colombia,
is the ‘high level of tolerance of relatives and friends for symptoms of mental
disorder,’ a factor that can help the ‘readjustment to family life and work after
discharge’ (WHO, 1979). In an Indian 5-year follow-up study of persons with
schizophrenia, 80% of families preferred that the person continue to stay with the
family (ICMR, 1988). Another study found home care treatment for persons with
schizophrenia was more accepted and less disruptive for families than hospital care
(Pai and Kapur, 1983).
More recent findings, however, have shown that with increasing urbanization
and the breakdown of traditional values and social structures, there has been a
decline in tolerance for the mentally ill in industrializing parts of the developing
world. In a review of public attitudes towards mental illness in New Delhi, India,
Prabhu et al. (1984) concluded that ‘the lay public, including the educated urban
groups, are largely uninformed about the various aspects of mental health. The
mentally ill are perceived as aggressive, violent and dangerous. There is a lack of
awareness about the available facilities to treat the mentally ill and a pervasive
defeatism exists about the possible outcome after therapy. There is a tendency to
maintain social distance from the mentally ill and to reject them’.
It is clear that attitudes to the mentally ill vary from culture to culture and are
influenced by the label that is applied to the person with psychosis.
R E F E R E N C E S – A P P E N D I X II
Bentinck, C. (1967). Opinions about mental illness held by patients and relatives. Family Process,
6, 193–207.
Binitie, A.O. (1970). Attitude of educated Nigerians to psychiatric illness. Acta Psychiatrica
Scandinavica, 46, 391–398.
Brockington, I.F., Hall, P., Levings, J., et al. (1993). The community’s tolerance of the mentally
ill. British Journal of Psychiatry, 162, 93–99.
D’Arcy, C. and Brockman, J. (1976). Changing public recognition of psychiatric symptoms?
Blackfoot revisited. Journal of Health Social Behaviour, 17, 302–310.
Crumpton, E., Weinstein, A.D., Acker, C.W., et al. (1967). How patients and normals see the
mental patient. Journal of Clinical Psychology, 23, 46–49.
Erinosho, O.A. and Ayonrinde, A. (1981). Educational background and attitude to mental illness
among the Yoruba in Nigeria. Human Relations, 34, 1–12.
Giovannoni, J.M. and Ullman, L.P. (1963). Conceptions of mental health held by psychiatric
patients. Journal of Clinical Psychology, 19, 398–400.
Hall, P., Brockington, I., Eisemann, C., Madianos, M., Maj, M. (1991). “Difficult to place”
psychiatric patients. British Journal of Psychiatry, 302, 1150.
221 References
Indian Council of Medical Research (ICMR). (1988). Multicentred collaborative study of factors
associated with the cause and outcome of schizophrenia. New Delhi, India: ICMR.
Lamy, R.E. (1966). Social consequences of mental illness. Journal Consulting Psychology, 30,
450–455.
Link, B.G., Cullen, F.T., Frank, J., et al. (1987). The social rejection of former mental patients:
Understanding why labels matter. American Journal of Sociology, 92, 1461–1500.
Manis, M., Houts, P.S. and Blake, J.B. (1963). Beliefs about mental illness as a function of
psychiatric status and psychiatric hospitalization. Journal of Abnormal and Social Psychology,
67, 226–233.
Miller, D. and Dawson, W.H. (1965). Effects of stigma on re-employment of ex-mental patients.
Mental Hygiene, 49, 281–287.
MORI. (1997). Attitudes Toward Schizophrenia: A survey of public opinions. Research study
conducted by Fleishman Hillard Eli Lilly, September.
Page, S. (1980). Social responsiveness toward mental patients: the general public and others.
Canadian Journal of Psychiatry, 25, 242–246.
Pai, S. and Kapur, R.L. (1983). Evaluation of home care treatment for schizophrenic patients.
Acta Psychiatrica Scandinavica, 67, 80–88.
Penn, D.L., Guynan, K., Daily, T., et al. (1994). Dispelling the stigma of schizophrenia: what sort
of information is best? Schizophrenia Bulletin, 20, 567–578.
Prabhu, G.C., Raghuram, A., Verma, N., et al. (1984). Public attitudes toward mental illness: a
review. NIMHANS Journal, 2, 1–14.
Rabkin, J.G. (1980). Determinants of public attitudes about mental illness: summary of the
research literature, presented at the National Institute of Mental Health Conference on Stigma
Toward the Mentally Ill, Rockville, Maryland, January 24–25.
Rin, H. and Lin, T. (1962). Mental illness among Formosan aborigines as compared with the
Chinese in Taiwan. Journal of Mental Science, 108, 134–146.
Robert Wood Johnson Foundation. (1990). Public Attitudes Toward People with Chronic Mental
Illness. New Jersey, The Robert Wood Johnson Foundation Program on Chronic Mental Illness,
April.
Sathyavathi, K., Dwarki, B.R. and Murthy, H.N. (1971). Conceptions of mental health.
Transactions of All India Institute of Mental Health, 11, 37–49.
Scheper-Hughes, N. (1979). Saints, Scholars and Schizophrenics: Mental Illness in Rural Ireland.
Berkeley, University of California Press, 89.
Swanson, R.M. and Spitzer, S.P. (1970). Stigma and the psychiatric patient career. Journal of
Health Social Behaviour, 11, 44–51.
Tringo, J.L. (1970). The hierarchy of preference towards disability groups. Journal of Special
Education, 4, 295–306.
Trute, B. and Segal, S.P. (1976). Census tract predictors and the social integration of sheltered
care residents. Social Psychiatry, 11, 153–161.
Verghese, A. and Beig, A. (1974). Public attitude towards mental illness: the Vellore study. Indian
Warner, R. (1974). Recovery from Schizophrenia: Psychiatry and Political Economy, 2nd edn.
London, Routledge.
Waxler, N.E. (1977). Is mental illness cured in traditional societies? A theoretical analysis. Culture
Medicine and Psychiatry, 1, 233–253.
Wig, N.N., Suleiman, M.A., Routledge, R., et al. (1980). Community reactions to mental dis-
orders: a key informant study in three developing countries. Acta Psychiatrica Scandinavica,
61, 111–126.
Wolff, G. (1997). Attitudes of the media and the public. In Leff, J., ed. Care in the Community:
Illusion or Reality? New York, Wiley.
World Health Organization. (1979). Schizophrenia: An International Follow-up Study. Chichester,
England, Wiley.
Appendix III
Presentation evaluation
(Used in Calgary, Canada to assess presentations of the Partnership
Programme)
We would appreciate your time in answering the following few questions about
the presentation. Your responses will help us evaluate whether we are meeting our
goals and will help us to improve our performance.
1 Has your knowledge about schizophrenia improved as a result of this
presentation?
Not at all Somewhat Considerably
2 Has this presentation changed your attitude towards people with schizophrenia?
My attitude has become more positive
My attitude has not changed
My attitude has become more negative
3 Has your knowledge about other mental illnesses improved as a result of this
presentation?
Not at all Somewhat Considerably
4 Has this presentation changed your attitude towards people with a mental
illness?
My attitude has become more positive
My attitude has not changed
My attitude has become more negative
5 What part of this presentation had the most benefit for you?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
6 What part of this presentation would you improve?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
223
224 Appendix III Presentation evaluation
7 Do you think that you will now act differently towards people with a mental
illness as a result of this presentation? Please explain.
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
8 To further help us with our analysis, will you tell us how old you are?
_____ years
9 Are you?
Male Female
10 What are the first three digits of your postal code? ____ ____ ____
Community pre/post-survey
Hello, this is (name) calling for the Calgary Regional Health Authority. We are
doing a short 10 min survey about mental health. Could I speak to someone in the
household 15 years of age or older?
In which of the following categories does your age fall? Read list
Age:
15–29 years old
30–59 years old
60 years of age or older
Gender:
Male Female
Region:
Calgary area
Drumheller area
1 In the past 6 months, have you seen, read or heard any advertising or promotions
about schizophrenia?
Yes No
(1a) If yes, where did you see, read or heard the advertisement or promotions?
_______________________________________________________________
_______________________________________________________________
Do not read. Record all responses. Probe with anywhere else? (List up to three
responses)
Television
Radio
Calgary Herald (newspaper)

Calgary Sun (newspaper)
Calgary Mirror (newspaper)
Calgary Rural Times (newspaper)
Drumheller Mail (newspaper)
Other newspaper
Newsletters from community leagues, non-profit organizations, etc.
Magazine
Brochure/pamphlet
Poster
Outdoor billboards
Busboard/advertising on the bus
Other media
Don’t remember/don’t know
2 In the past 6 months, have you seen, read or heard anything in the news about
people with schizophrenia?
Yes No
(2a) If yes, could you tell me how the person with schizophrenia was
described?
_______________________________________________________________
_______________________________________________________________
Do not read. Probe with anything else? (List up to three responses)
Violent or dangerous to others
Committing a crime
Homeless
A public nuisance
Dishevelled in appearance or dirty
Suffering from symptoms, such as hearing voices or speaking to self
Suicidal or depressed
A victim of crime
The victim of serious illness (e.g. requiring medical treatment)
In need of better treatment or support systems
Involved in research
Other positive description
Other negative description
Don’t remember/don’t know
3 Do you or have you ever worked as an employee in an agency that provides
services to people with emotional problems or mental illnesses?
Yes No
4 Have you or someone you know ever been treated for an emotional problem or
a mental illness?
Yes No Not sure
(4a) If yes, was that … Read list
Yourself
Spouse/child
Other relation
Friend
Acquaintance
Co-worker
5 Have you or someone you know ever been treated for schizophrenia?
Yes No Not sure
(5a) If yes, was that … Read list
Yourself
Spouse/child
Other relation
Friend
Acquaintance
Co-worker
6 Schizophrenia can touch the lives of many people, often through close friends
or relatives, but also through work, volunteerism or life in general. To what
extent does schizophrenia affect your life? Read list
Not at all
Somewhat
Quite a bit
All the time, that is, you deal with it almost daily
7 To the best of your knowledge, what causes schizophrenia? Do not read. Probe
with anything else? Record all responses (List up to three responses)
Physical abnormalities in the brain
Chemical imbalance in the brain
Brain disease
Virus during pregnancy
Genetical inheritance
Other biological factor
Poor upbringing by parents
Physical abuse
Drug or alcohol abuse
Stress (such as losing a job, social stress)

Traumatic event or shock (e.g. assault, death, and accident)
Poverty
General breakdown in social values
Possession by evil spirits. God’s punishment
Other factors
The exact causes are unknown
Don’t know
8 All things considered, do you believe people with schizophrenia … Read

statement …
(1) Frequently (2) Often (3) Rarely or (4) Never
Can be successfully treated outside of the hospital in the community
Tend to be mentally retarded or of lower intelligence
Hear voices telling them what to do
Need prescription drugs to control their symptoms
Can be successfully treated without drugs using psychotherapy or social
interventions
Are a public nuisance due to panhandling, poor hygiene or odd behaviour
Suffer from split or multiple personalities
Can be seen talking to themselves or shouting in city streets
Can work in regular jobs
Are dangerous to the public because of violent behaviour
9 To the best of your knowledge, what per cent of the population suffers from
schizophrenia? Round off percentage
_____ per cent
Don’t know
10 Please tell me how you would feel in each of the following situations using the
scale …
(1) Definitely (2) Probably (3) Probably not (4) Definitely not
Read each statement. Record one answer per statement.
Would you feel afraid to have a conversation with someone who has
schizophrenia?
Would you be upset or disturbed about working on the same job with
someone who has schizophrenia?
Would you be able to maintain a friendship with someone who has
schizophrenia?
Would you feel upset or disturbed about rooming with someone who has
schizophrenia?
Would you feel ashamed if people knew someone in your family has been
diagnosed with schizophrenia?
Would you marry someone with schizophrenia?
11 How would you feel about having a group home for six to eight people with
schizophrenia in your neighbourhood? Would you be … Read list
In favour
Opposed
In different, that is, it doesn’t matter
Finally just a few questions to help us classify and better understand all of the
survey results.
_______________________________________________________________
_______________________________________________________________
12 On average, how many hours of television a week do you watch?

_____ ## Hours watched
13 And what age did you turn on your last birthday?

_____ ##
14 What is the highest level of education you have completed? Would it be … Read
list
Elementary or up to and including Grade 6
Junior high or Grades 7–9
High school or Grades 10–13
College or technical school
University
15 In which country were you born?

_______________________________________________________________
What is your postal code? ____ ____ ____ ____ ____ ____
Well, that’s the last of my questions. Thanks so much for answering this survey. We
really appreciate the time you took.
Appendix IV
ER recommendations and survey
(Includes surveys done with Alberta, Canada hospitals to evaluate
emergency room (ER) treatment on those with schizophrenia, and
recommendations submitted)
ER policies and procedures affecting those with schizophrenia

For the Local Advisory Committee of the World Psychiatric Association (WPA)
Global Project on Stigma and Schizophrenia
23 November, 1998
Sub-Committee on health care professionals target group

Gus Thompson, PhD University of Alberta and Calgary, Chair
Roger Bland, MB University of Alberta
Marian Ewing, RPN Health Authority #5
Michelle Misurelli Schizophrenia Society of Alberta
Beth Evans, BA Provincial Mental Health Advisory Board
Julio Arboleda Flórez, MD, PhD Queen’s University
Laurie Beverly, MN Calgary Regional Health Authority
Ruth Dickson, MD Peter Lougheed Centre
Prepared by:
Gus Thompson
Roger Bland
Marian Ewing
Comments on this discussion paper can be directed to:
Dr Gus Thompson, Department of Psychiatry, University of Alberta,
Edmonton, Alberta T6G 2G3.
Phone (403) 492-8753. E-mail to: Gus.Thompson@ualberta.ca
The questionnaire
The questionnaire was designed to elicit information on matters thought by the
Sub-Committee to be highly relevant to the treatment of people with schizophrenia.
These included privacy, security (for patients and staff), policies on patient rights
229
230 Appendix IV ER recommendations and survey
and the use of restraints, staff training in mental health and crisis manage-
ment, waiting times and patient/family satisfaction with services. Questionnaires
were completed by the respondents at their leisure and mailed or faxed to the
research team.
Privacy/security
The responses suggest that the ERs at the Peter Lougheed Centre and the Rocky
View General Hospital have adequate rooms for the provision of secure and private
services for the mentally ill patients but the Drumheller General Hospital and the
Foothills Medical Centre do not. Upcoming planning and development activities
may improve the situation at the Foothills Medical Centre.
All the Calgary hospitals report having good access to security staff but the
Drumheller General Hospital appears to have such staff only available during
restricted hours and without ready access in any case.
Patient rights
Policies governing patient rights are formalized for all the Calgary hospitals, but
apparently not at the Drumheller General Hospital. In no case is a statement of
rights presented to patients with schizophrenia (or their families) as a matter of
course. The Peter Lougheed Centre will provide this upon patient request.
The Calgary hospitals have a policy on the use of restraints, but the opinion is
mixed among the respondents for the Drumheller General Hospital.
Training
All the ERs in the Calgary hospitals reportedly provide onsite psychiatric staff
who had received specific training in the handling of mental health emergencies.
However, these individuals are not available at all times. For the Peter Lougheed
Centre, such staff are onsite for 60 h/week (1 week + 168 h).The figure is 112 h for
both the Rocky View General Hospital and the Foothills Medical Centre. In all
cases, specialists are on call at all times. Continuing Medical Education (CME) in
this topic area is not required, although some is offered in Calgary.
ER staff, although not always formally trained in psychiatry/mental health will
have received some expertise in the handling of mental health crises as part of
their formal education. They may be selected for this attribute by the Calgary
hospitals who also require in service in this area. However, the respondents for
the Drumheller General Hospital provided the opinion that their staff are not well
prepared. Notably, in service is not required at the Drumheller General Hospital.
231 Additional respondent comments
Satisfaction
According to the respondents, none of the hospitals have data that would deal with
the question of whether psychiatric patients have to wait longer for services than
others, although a study is about to be conducted in Calgary. Several respondents
noted that all patients are treated equally, and there should thus be no differences.
Similarly, no data were presented that reflected client satisfaction with services.
The consensus appeared to be that no such data exists, although one respondent
noted that a number of ‘local’ studies might have been conducted in the past.
Planned improvements
The aforementioned Foothills Medical Centre planning review notwithstanding,
none of the respondents noted the existence of any firm plans to address any of the
ER issues noted above.
Additional respondent comments
Among the Calgary respondents, there was a stated belief that ER psychiatry is
neglected to some degree by ‘mainstream’ psychiatry/mental health and marginal-
ized by the ER departments. The resource issue that was identified pertained to
‘backing up’ in ERs due to non-ER beds being full. One respondent pointed out
that members of her psychiatric ER team are ‘excellent’. The Drumheller General
Hospital respondents almost unanimously identified a need for more staff and
more training.
Discussion and recommendations
While the differences across the hospitals are important and interesting, in many
aspects, they are not the most important issue in the long run. Rather, what is
important is whether or not psychiatric patients in emergency departments are
treated appropriately. A key to this is the adoption of acceptable standards and
practices by each hospital with an ER. Perhaps the best way to achieve this is to have
suitable questions added to the accreditation process that each hospital in Alberta
is engaged in on a regular basis. To this end, preliminary discussions have been held
with the Canadian Council on Health Services Accreditation (CCHSA), which is
the accrediting body that surveys all Canadian hospitals. Furthermore, appropriate
staff from both the Drumheller and Calgary Regional Health Authorities have
requested copies of this report as an aid to their approach to future accreditation
reviews. In support of this, the items from our ER survey have been recast in the
CCHSA questionnaire format in order to facilitate this kind of use.
232 Appendix IV ER recommendations and survey
It should be noted that we received very good support and cooperation from the
ER staff at all the hospitals that we approached. They would be very interested in
feedback from us on this activity.
Thus, our recommendations are:
1 That the ER guidelines as formulated in be sent to the CCHSA for consideration
for adoption by that body and for inclusion in their survey instrument.
2 That we provide copies of our findings and recommendation to the partici-
pating ER Directors in Drumheller and Calgary, the Managers of Patient Care
for the Calgary Regional Health Authority and Health Authority #5, and the
Provincial Mental Health Advisory Board.
Questionnaire
Are your ER medical staff trained in managing mental health crises?

• Are they required to participate in CME in this area?
• How does this compare with requirements, training and qualification in other
areas of medicine?
Are your other staff (e.g. nurses) trained in managing mental health emergencies?
• If trained, how did they receive the training?
• Is there any in-service requirement in this field?
If you have data on whether wait times differ in any way from those with other
illnesses or conditions, please provide the most recent results.
If you have data on patient (mental health) and family satisfaction with your
ER services, please provide a copy of the most recent results. Please include data,
if possible, drawn from patients with other illnesses. Is such data collected on a
regular basis
Do you have plans for any changes in the above areas?
Do you have any comments pertaining to the care of the mentally ill in emergency
departments?
Proposed summary accreditation guidelines
Prepared by
The Sub-Committee on Health Care Professionals Target Group for the Local
Advisory Committee of the WPA Global Project on Stigma and Schizophrenia
Gus Thompson, Chair
Roger Bland
Michelle Misurelli
233 Proposed summary accreditation guidelines
Marian Ewing
Beth Evans
Julio Arboleda-Flórez
Laurie Beverly
Ruth Dickson
Special guidelines for patients with a mental illness
Organization’s rating Surveyor’s rating

N M P S N M P S
P1.0 The examination and interview
process and space are adequate for
the safety, security and privacy of
patients and staff
P1.1 There are enough private interview
rooms available to ensure privacy
during interviews in most situations
P1.2 Interview rooms are secure
P1.3 Security staff are available on a timely,
as needed, basis
P1.4 There is a policy in place governing the
use of restraints
Index
A Beautiful Mind 49, 58, 74 recommendations to hospital directors

adult education, Germany 56 18–19
anti-stigma interventions 160 results related to target groups 19–29
Anti-stigma Prize, Germany 52 community change agents 24–7
Anti-stigma Training Modules, Germany health care professionals 18–21
52–3 teenagers 21–4
Association of Friends for Schizophrenia, ‘Starry, Starry Night’ production 20–1
Turkey 113 Teens Talking 2 Teens competition 23–4,
Australia 139–40 25
award-winning efforts 140 change agents 24
information resources 139–40 Canada 24–7
media collaboration 140 children see high school students
Austria 42–5 Chile 142–4
media coverage 42, 44 consumers and family members 144
target groups 43 interventions in the psychiatric
high school students 44 community 143–4
journalists 43–4 clergy, as target group
mental health services 45 Canada 24
Poland 91–2
baseline survey 187, 211–12 Coalition Movement for Mental Health in
BASTA (Bavarian Anti-Stigma-Action) 57 Brazil 120–1
Book Project, Brazil 121 collaboration 152–3
Boulder Local Action Group see United States communication
Brazil 117–22 consultant 183
messages 161, 166–7
coalition building 120–1
review of resources 182, 198–9
cultural activities 121
support materials, Greece 75
educational initiatives 120
Competence Centre for Destigmatization of
objectives 119
People with Schizophrenia (CCDPS),
programme establishment 117–18
Germany 53
research 119–20 consumers as target group
target groups 119 Chile 144
targeting two communities 118 Egypt 124
Brescia Local Action Group see Italy Greece 76–7
budget preparation 186 Japan 98
business community leaders as change agents, Morocco 128–9
Canada 24–6 Spain 38
Turkey 115
Calgary, Alberta see Canadian pilot site criminal justice system, United States 82–3
Canadian pilot site 15–30
Calgary Local Action Group 15–18 Das Weisse Rauschen (The White Noise) 49,
radio coverage 28–9 58
235 Index
Day of Solidarity, Poland 88, 92–3 Japan 97–8

developing countries 6, 218–20 Spain 39–40
discrimination 216 Turkey 114–15
Düsseldorf, Germany 51–3 United States 84
see also media coverage
educational initiatives German Research Network on Schizophrenia
Brazil 120 (GRNS) 50
Germany 56 Germany 49–58
India 147 Düsseldorf 51–3
Egypt 123–6 ‘Anti-stigma’ Training Modules 52–3
broadening the programme 125–6 Competence Centre for
interventions 124 Destigmatization of People with
research 123 Schizophrenia 53
target groups first ‘Anti-stigma’ Prize 52
consumers and family members 124 interventions 52
journalists 124 surveys 51–2
medical students 125 Hamburg 53–4
primary care physicians 124 Itzehoe-Steinburg and Kiel 54
secondary school students 125 Leipzig 54–6
emergency room recommendations 229–33 adult education 56
employers, as target group interventions based upon focus group
Italy 65–6 results 55
Poland 91 media coverage 56
United States 81–2 Munich 56–7
Greece 70–8
family members as target group
communication support materials 75
Chile 144
Egypt 124 expanding volunteer work 73–4
Greece 76–7 local networking and awareness 77
Japan 97 national opportunity 71–2
Morocco 128–9 stigma and the arts 74–5
Spain 38 concert event 27–8, 76
Turkey 115 survey 70–1
family support, India 145–6 target groups 72
film portrayals 49, 58 high school students 76
focus groups 54–5, 158–62, 166 journalists 72–3
anti-stigma interventions 160 mental health professionals 72
communication messages 161, 166 those living with schizophrenia 76–7
dimensions of stigma 159
Germany 28, 55–6 Hamburg, Germany 53–4
Italy 66–7 health care professionals, as target group 155
monitoring and process documentation Austria 45
161 Canada 18–21
successes 162 Morocco 129, 131
fund-raising guidelines 209–11 Slovakia 109
corporate recognition 211 Turkey 113–14
solicitation package 210–11 see also mental health professionals, as
target group
general practitioners as target group 155 high school students, as target group 155
Egypt 124 Austria 44
Turkey 113–14 Egypt 125
see also health care professionals Germany 52, 53–4, 55
general public 27–9 Greece 76
as target group 27–9 Italy 63–4
Austria 44 Japan 97–8, 100
Germany 52 Poland 91
236 Index
Turkey 115–16 nomination of team members 180

United Kingdom 134–5 programme implementation 190
United States 84–5 coordination of implementation
see also teenagers, as target group schedules 190
home helpers, Japan 100–1 work schedule preparation 185–6
see also specific countries
IDMAJ programme, Morocco 128 Local Action Plan, first draft 180, 181
see also Morocco Local Project Coordinator
India 145–7 briefing 179
educational initiatives 147 identification of 179
importance of family support 145–6 local welfare commissioners, Japan 101–2
new initiatives 146–7
working with the National Service Scheme Madrid Local Action Group see Spain
147 media coverage 155, 162–6
informational presentations, Spain 38 Australia 140
Initial Planning Group establishment 179–80 Austria 42, 44
‘inside-out’ strategy, Spain 37, 40 Canada 28–9
institutional capabilities review 182 Germany 28, 56
Irre Menschlich, Germany 53 Greece 27–8
Irrsinnig Menschlich e.V., Germany 54, 56 materials development 189
Italy 62–7 pre-testing 189
focus group findings 66–7 materials selection 187
research 63 media selection 185
stigma and high school students 63–4 advantages and disadvantages of various
stigma and journalists 64–5 media 202–5
working with employers and their press event creation 206–9
employees 65–6 follow-up 209
Itzehoe-Steinburg, Germany 54 news conferences 206–7
news release 208–9
Japan 95–103
press kit 207–8
name change of schizophrenia 95–6
Slovakia 109–10
follow-up research on effectiveness
96–8 Spain 39–40
guidelines for the future 98–9 United States 84
working in the community 99 see also journalists, as target group
Okayama 101–2 medical professionals see health care
Sendai 100–1 professionals; mental health
Tokachi 100 professionals
journalists, as target group 155 medical students, as target group
Austria 43–4 Canada 19
Canada 15, 26–7 Egypt 125
Egypt 124 Mental Health Awareness in Action initiative,
Germany 52 United Kingdom 133
Greece 72–3 Mental Health policies and services review
Italy 64–5 182, 197–8
see also media coverage mental health professionals, as target group
Austria 45
Kiel, Germany 54 Greece 72
Japan 96–7, 98
law enforcement professionals, as target see also health care professionals
group messages 161, 166–7
United Kingdom 134 development of concepts 188, 212–14
United States 82–3 pre-testing of concepts 188
Local Action Groups 152–3 sample messages 212–13
development of 153–5 selection of 184–5
invitations to join 180–1 Michalovce, Slovakia 107–9
237 Index
Morocco 128–31 communication resources analysis 182,

interventions 129–31 198–9
research 128 institutional capabilities review 182
target groups National/Mental Health policies and
consumers and family members 128–9 services assessment 182, 197–8
medical professionals 129 prior stigma-reduction programmes
Munich, Germany 56–7 183
site description 181–2
National Health policies and services review evaluation 191–3
182, 197–8 outcome measures 199–201
National Service Scheme, India 147 presentation evaluation 223–8
news conferences 206–7 implementation 189–90
news release 208–9 coordination of schedules 190
content 208 local support and consensus building
writing 209 189–90
programme diary maintenance 190
Okayama, Japan 101–2 monitoring 190
‘Open the Door’ NGO, Poland 90–1 planning action after programme ends 193
‘Open the Doors’ anti-stigma programme preliminary steps 178–81
Germany 50 draft action plan 180, 181
Poland 88 Initial Planning Group establishment
Slovakia 108 179–80
Spain 38 Local Action Team development 180–1
organizational chart development 186 Local Project Coordinator briefing 179
Otvorme dvere – otvorme srdcia (ODOS), Local Project Coordinator identification
Slovakia 108 179
meetings 180, 181
Partnership Programme, Calgary site selection 178–9
Schizophrenia Society 21–2
programme design 183–7
patient education see educational initiatives
budget preparation 186
Poland 88–93
communication consultant 183
Day of Solidarity 88, 92–3
long-term goals 183
national perspective 90–2
media selection 185, 202–5
clergy 91–2
employers 91 official recognition from WPA 186–7
‘Open the Door’ NGO 90–1 organizational chart development 186
teachers and students 91 potential message selection 184–5
needs assessment 89–90 short-term, site-specific objectives 183
police officers as target group, United target audience selection 184
Kingdom 134 work schedule preparation 185–6
PR firm, working with, Spain 39–40 programme tools development 187–9
prejudice 215 baseline survey 187, 211–12
presentation evaluation 223–8 central theme and programme concepts
press event 206–9 agreement 187–8, 212–14
follow-up 209 media materials development 189
news conferences 206–7 media materials selection 187
news release 208–9 message concepts development 188
press kit 207–8 new materials production 188
programme evaluation 191–3 pre-testing materials 189
outcome measures 199–201 pre-testing message concepts 188
presentation evaluation 223–8 programme site
programme implementation guidelines description 181–2
175–93 selection 178–9
data collection about programme site survey guidelines 194–7
181–3, 194–7 Proof 74
238 Index
psychiatrists see mental health professionals, Teens Talking 2 Teens competition, Canada
as target group 23–4, 25
television coverage see media coverage
radio coverage see media coverage tetralogue model 107
Romania 149–50 Togo-shiccho-sho 96
Tokachi, Japan 100
SANE Australia 139–40 Turkey 112–16
São Paulo see Brazil NGO creation 113
schizophrenia surveys 112–13
as focus of WPA programme 6–7 target groups 113–16
cultural differences between developed and consumer and family members 115
developing countries 6, 218–20 general practitioners 113–14
stigma and 216–18 general public 114–15
school children see high school students; school children and teachers 115–16
teenagers, as target group
school teachers, as target group
United Kingdom 133–7
Germany 53
findings and recommendations 135–6
Poland 91
target groups
Turkey 115–16
police officers 134
Sendai, Japan 99–100
school children 134–5
site survey guidelines 194–7
United States 80–6
see also programme site
criminal justice system 82–3
Slovakia 107–11
employers 81–2
changing the system 109
high school students 84–5
media coverage 109–10
media and the general public 84
Michalovce 107–9
Spain 35–41
approach to the public 39–40 vicious cycle of stigmatisation model 2–5
awareness 35–6 volunteer work, Greece 73–4
informational presentations 38
‘inside-out’ strategy 37, 40 World Psychiatric Association (WPA) Global
presentations to health care institutions 38 Programme against Stigma and
results 40–1 Discrimination because of
working with PR firm 39–40 Schizophrenia 1–11, 152–5
‘Starry, Starry Night’ production, Canada activities of 7–8
20–1 administrative structure 8–9
stigma 2, 215, 216–18 conceptual framework 2–5
dimensions of 159 duration of 9–10
examples of 201 evaluation of 10–11
extent of 217–18 flexibility 153–5
suggestions for anti-stigma interventions focus on schizophrenia 6–7
160 global identity 168
vicious cycle of stigmatization model 2–5 recommendations 169–71
relationship with other programmes 10
target groups 155–8 responsibility for at country level 7
selection of 184 see also programme implementation
see also specific countries and specific target guidelines
groups www.openthedoors.com 153
teenagers, as target group
Austria 44 Zenkaren, Japan 95–6
Canada 21–4
see also high school students

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Reducing the Stigma of Mental Illness

Cambridge University Press

© Cambridge University Press 2005

This publication is in copyright. Subject to statutory exception and to the provision of

First published in print format 2005

isbn-13 978-0-511-12500-3 eBook (EBL)

isbn-13 978-0-521-54943-1 paperback

1 Developing the Programme 1

Phase I Calgary, Alberta, Canada 13

2 The Canadian Pilot Site 15

Community Change Agents and opinion leaders 24

16 United Kingdom 133

17 Working in Partnership – Australia 139

18 Chile, India and Romania 142

19 Conclusions and Recommendations 152

The different voices of stigma and discrimination

The Global Programme of the World Psychiatric Association

In 1996, the World Psychiatric Association undertook a programme to address

• The programme’s goals should be based upon information obtained from

• The programme should be directed at particular, deﬁned target groups.

journalists, politicians, schoolteachers, and perhaps most notably, those living

This programme was developed by experts from many countries, non-government

ex ofﬁcio Review Committee Members

Chairpersons and Advisors of Local Action Groups

Each chapter of this book is dedicated to a different initiative in a different country.

Canada Julio Arboleda-Flórez and Heather Stuart

Developing the Programme

The World Psychiatric Association (WPA) Global Programme against Stigma

1 What conceptual framework should the programme adopt?

What conceptual framework should the programme adopt?

The vicious cycle of stigmatization

Cycle of stigmatization for the individual.

Cycle of stigmatization for the family.

Cycle of stigmatization for mental health services.

Cultural differences between industrialized and

Focus on schizophrenia or on mental illness in general?

The selection of schizophrenia as the central focus of the programme makes

Who should carry out the programme on country level?

How should the activities of the programme be selected?

seemed dangerously similar to a plan for confusion as it turned out it became a

What administrative structure should the programme have?

The administration of a large-scale programme must be in a single location and

How long should the programme last?

What relationship should there be with other efforts dealing with

How should the programme be evaluated?

in another setting. The former objective of being an action programme carried

Snapshots of a dynamic programme

Calgary, Alberta, Canada

The Canadian Pilot Site

On 16 September 1997, the World Psychiatric Association (WPA) held a press

Health care professionals

Emergency room professionals

The importance of group diversity and consumer input

Starry, Starry Night

Teenagers: students in grades 9 and 11

In the Drumheller area:

The Teens Talking 2 Teens Competition

Getting the message right