The Stigma of Mental Illness - End of the Story? Wolfgang Gaebel • Wulf Rössler Norman Sartorius Editors

The Stigma of Mental Illness - End of the Story? Editors Wolfgang Gaebel Norman Sartorius Department of Psychiatry and Psychotherapy Association for the Improvement of Mental Heinrich-Heine-University Health Programmes LVR-Klinikum Düsseldorf Geneva Düsseldorf Switzerland Germany

Wulf Rössler Psychiatric University Hospital University of Zurich Zurich Switzerland

ISBN 978-3-319-27837-7 ISBN 978-3-319-27839-1 (eBook) DOI 10.1007/978-3-319-27839-1

Library of Congress Control Number: 2016938229

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Introduction �� xv Wolfgang Gaebel, Wulf Rössler, Norman and Sartorius

Part I Stigma and Discrimination: Different Perspectives

1 On Revisiting Some Origins of the Stigma Concept as It Applies to Mental Illnesses �� 3 Bruce G. Link and Heather Stuart 2 Stigma and Stigmatization Within and Beyond Psychiatry �� 29 Asmus Finzen 3 Structures and Types of Stigma �� 43 Lindsay Sheehan, Katherine Nieweglowski, and Patrick W. Corrigan 4 Stigma in Different Cultures �� 67 Mirja Koschorke, Sara Evans-Lacko, Norman Sartorius, and Graham Thornicroft 5 Disorder-specific Differences �� 83 Claire Henderson 6 Who Is Contributing? �� 111 Alexandre Andrade Loch and Wulf Rössler 7 Discrimination and Stigma �� 123 Dzmitry Krupchanka and Graham Thornicroft 8 The Influence of Stigma on the Course of Illness �� 141 Harald Zäske 9 Changes of Stigma over Time �� 157 Georg Schomerus and Matthias C. Angermeyer 10 The Viewpoint of GAMIAN*-Europe �� 173 Pedro Manuel Ortiz de Montellano† 11 The Role of Family Caregivers: A EUFAMI Viewpoint �� 191 Bert Johnson

v vi Contents

12 Stigma, Human Rights and the UN Convention on the Rights of Persons with Disabilities �� 209 Peter Bartlett

Part II “Fighting” Stigma and Discrimination: Programs in Different Parts of the World

13 Opening Doors: The Global Programme to Fight Stigma and Discrimination Because of Schizophrenia �� 227 Heather Stuart and Norman Sartorius 14 Fighting Stigma in Canada: Opening Minds Anti-Stigma Initiative �� 237 Shu-Ping Chen, Keith Dobson, Bonnie Kirsh, Stephanie Knaak, Michelle Koller, Terry Krupa, Bianca Lauria-Horner, Dorothy Luong, Geeta Modgill, Scott Patten, Michael Pietrus, Heather Stuart, Rob Whitley, and Andrew Szeto 15 Like Minds, Like Mine: Seventeen Years of Countering Stigma and Discrimination Against People with Experience of Mental Distress in New Zealand �� 263 Ruth Cunningham, Debbie Peterson, and Sunny Collings 16 Australian Country Perspective: The Work of beyondblue and SANE Australia �� 289 Georgie Harman and Jack Heath 17 ONE OF US: The National Campaign for Anti-Stigma in Denmark �� 317 Johanne Bratbo and Anja Kare Vedelsby 18 The Time to Change Programme to Reduce Stigma and Discrimination in England and Its Wider Context �� 339 Claire Henderson, Sara Evans Lacko, and Graham Thornicroft 19 See Change: The National Mental Health Stigma Reduction Partnership in Ireland �� 357 Kahlil Coyle, Sorcha Lowry, and John Saunders 20 See Me: Scotland Case Study �� 379 Judith Robertson 21 The German Mental Health Alliance �� 405 Astrid Ramge and Heike Becker 22 Stigma in Midsize European Countries �� 417 Alina Beldie, Cecilia Brain, Maria Luisa Figueira, Igor Filipcic, Miro Jakovljevic, Marek Jarema, Oguz Karamustafalioglu, Daniel König, Blanka Kores Plesničar, Josef Marksteiner, Filipa Palha, Jan Pecenák, Dan Prelipceanu, Petter Andreas Ringen, Magdalena Tyszkowska, and Johannes Wancata Contents vii

Part III “Fighting” Stigma and Discrimination: Strategic Considerations

23 Fields of Intervention �� 435 Richard Warner† 24 Strategies to Reduce Mental Illness Stigma �� 451 Nicolas Rüsch and Ziyan Xu 25 “Irre menschlich Hamburg” – An Example of a Bottom-Up Project �� 469 Thomas Bock, Angela Urban, Gwen Schulz, Gyöngyver Sielaff, Amina Kuby, and Candelaria Mahlke 26 Illness Models and Stigma �� 485 Andreas Heinz

Part IV “Fighting” Stigma and Discrimination: Commentaries

27 What Has Proven Effective in Anti-Stigma Programming �� 497 Heather Stuart 28 What Has Not Been Effective in Reducing Stigma �� 515 Julio Arboleda-Flórez 29 Closing Mental Health Gaps Through Tackling Stigma and Discrimination �� 531 Sue Bailey

Part V Overcoming Stigma and Discrimination: Recent Programmatic and Contextual Approaches

30 Improving Treatment, Prevention, and Rehabilitation �� 537 Wolfgang Gaebel, Mathias Riesbeck, Andrea Siegert, Harald Zäske, and Jürgen Zielasek 31 Stigma and Recovery �� 551 Elizabeth Flanagan, Anthony Pavlo, and Larry Davidson 32 Stigma and the Renaming of Schizophrenia �� 571 Toshimasa Maruta and Chihiro Matsumoto 33 Trialogue: An Exercise in Communication Between Users, Carers, and Professional Mental Health Workers Beyond Role Stereotypes �� 581 M. Amering 34 Empowerment and Inclusion: The Introduction of Peer Workers into the Workforce �� 591 Geoff Shepherd and Julie Repper viii Contents

35 Targeting the Stigma of Psychiatry and Psychiatrists �� 613 Ahmed Hankir, Antonio Ventriglio, and Dinesh Bhugra 36 Exemplary Contribution of Professional Scientific Organizations: The European Psychiatric Association �� 627 Marianne Kastrup, Andreas Heinz, and Danuta Wasserman 37 Addressing Stigma: The WHO Comprehensive Mental Health Action Plan 2013–2020 �� 635 Shekhar Saxena Conclusion and Recommendations for Future Action �� 641 Wolfgang Gaebel, Wulf Rössler, and Norman Sartorius

Erratum...... E1 Index...... 651 Contributors

Michaela Amering Department of Psychiatry and Psychotherapy, Medical University of Vienna, Vienna, Austria Matthias C. Angermeyer Department of Public Health, University of Cagliari, Cagliari, Italy Julio Arboleda-Flórez Department of Psychiatry, Queen’s University, Kingston, ON, Canada Sue Bailey Academy of Medical Royal Colleges, London, UK Peter Bartlett Department of Law and Social Sciences, Faculty of Social Sciences, University of Nottingham, Nottingham, UK Heike Becker Department of Psychiatry and Psychotherapy, Medical Faculty, Heinrich-Heine-University, LVR-Klinikum Düsseldorf, Düsseldorf, Germany Alina Beldie Department of Psychiatry Middelfart, Region of Southern Denmark, Middelfart, Denmark Dinesh Bhugra Institute of Psychiatry, King’s College London, London, UK Thomas Bock Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Irre menschlich Hamburg e.V., Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Cecilia Brain Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden Johanne Bratbo The National Campaign for Anti-stigma in Denmark, Danish Committee for Health Education, Copenhagen, Denmark Shu-Ping Chen Centre of Health Services and Policy Research, Mental Health Commission of Canada, Ottawa, ON, Canada Sunny Collings Dean’s Department, University of Otago, Wellington, New Zealand

ix x Contributors

Patrick W. Corrigan Institute of Psychology, Illinois Institute of Technology, Chicago, IL, USA Kahlil Thompson Coyle See Change and Shine – Supporting People Affected by Mental Ill Health, Dublin, Ireland Ruth Cunningham Department of Public Health, University of Otago, Wellington, New Zealand Larry Davidson Department of Psychiatry, Yale University School of Medicine, New Haven, CT, USA Keith Dobson Department of Psychology, University of Calgary, Calgary, AB, Canada Sara Evans-Lacko Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK Maria Luisa Figueira Department of Psychiatry, University of Lisbon, Lisbon, Portugal Igor Filipcic Department of Psychiatry, University Hospital Center Zagreb, Zagreb, Croatia Asmus Finzen Berlin, Germany Elizabeth Flanagan Department of Psychiatry, Yale University School of Medicine, New Haven, CT, USA Wolfgang Gaebel Department of Psychiatry and Psychotherapy, Medical Faculty, Heinrich-Heine-University, LVR-Klinikum Düsseldorf, Düsseldorf, Germany Ahmed Hankir Department of Psychiatry, Carrick Institute for Graduate Studies, Cape Canaveral, USA Georgie Harman beyondblue, Hawthorn, VIC, Australia Jack Heath SANE Australia, South Melbourne, VIC, Australia Andreas Heinz Department of Psychiatry and Psychotherapy, Charité – Universitätsmedizin Berlin, Berlin, Germany Claire Henderson Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK Miro Jakovljevic Department of Psychiatry, University Hospital Center Zagreb, Zagreb, Croatia Marek Jarema 3rd Department of Psychiatry, Institute of Psychiatry and Neurology, Warsaw, Poland Bert Johnson EUFAMI (European Federation of Associations of Families of People with Mental Illness), Leuven, Belgium Contributors xi

Oguz Karamustafalioglu Psychiatry Department, Sisli Etfal Teaching and Research Hospital, Istanbul, Turkey Marianne Kastrup Centre for Transcultural Psychiatry, Psychiatric Centre Copenhagen, Copenhagen, Denmark Bonnie Kirsh Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada Stephanie Knaak Department of Community Health and Epidemiology, Mental Health Commission of Canada, Ottawa, ON, Canada Michelle Koller Centre for Health Services and Policy Research, Queen’s University, Kingston, Canada Department of Community Health and Epidemiology, Mental Health Commission of Canada, Ottawa, ON, Canada Daniel König Clinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of Vienna, Vienna, Austria Mirja Koschorke Department of Health Service and Population Research, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK Terry Krupa School of Rehabilitation Therapy, Queen’s University, Kingston, ON, Canada Dzmitry Krupchanka Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UK Amina Kuby Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Bianca Lauria-Horner Department of Psychiatry, Dalhousie University, Halifax, NS, Canada Bruce G. Link Department of Epidemiology, Columbia University, New York, NY, USA Alexandre Andrade Loch Laboratory of Neuroscience (LIM-27), Institute of Psychiatry, School of Medicine, University of São Paulo, São Paulo, Brazil Sorcha Lowry See Change and Shine – Supporting People Affected by Mental Ill Health, Dublin, Ireland Dorothy Luong Department of Occupational Therapy, University of Toronto, Toronto, ON, Canada Candelaria Mahlke Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Josef Marksteiner Department of Psychiatry and Psychotherapy A, LKH Hall, Hall in Tirol, Austria xii Contributors

Toshimasa Maruta Health Management Center, Seitoku University, Matsudo City, Chiba Prefecture, Japan Chihiro Matsumoto Department of Psychology, Rikkyo University, Tokyo, Japan Geeta Modgill Mental Health Commission of Canada, Ottawa, ON, Canada Hans-Jürgen Möller Department of Psychiatry and Psychotherapy, Medical Center of the University of Munich, Munich, Germany Anne-Maria Möller-Leimkühler Department of Psychiatry and Psychotherapy, Medical Center of the University of Munich, Munich, Germany Pedro Manuel Ortiz de Montellano† GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe), Brussels, Belgium Katherine Nieweglowski Institute of Psychology, Illinois Institute of Technology, Chicago, IL, USA Filipa Palha Association Encontrar+se (Association to Support Persons with Severe Mental Disorders), Education and Psychology, Portuguese Catholic University, Lisbon, Portugal Scott Patten Departments of Community Health Sciences and Psychiatry, Mental Health Commission of Canada, Ottawa, ON, Canada Anthony Pavlo Department of Psychiatry, Yale University School of Medicine, New Haven, CT, USA Jan Pecenák Clinic of Psychiatry, Faculty of Medicine, University Hospital, Bratislava, Slovakia Debbie Peterson Social Psychiatry and Population Mental Health Research Group, University of Otago, Wellington, New Zealand Michael Pietrus Mental Health Commission of Canada, Ottawa, ON, Canada

Blanka Kores Plesničar University Psychiatric Hospital Ljubljana, Ljubljana-Polje, Slovenia Dan Prelipceanu Department of Psychiatry, Carol Davila Medicine and Pharmacy University, Bucharest, Romania Astrid Ramge German Mental Health Alliance, Berlin, Germany Julie Repper ImROC Programme, Centre for Mental Health, London, UK Mathias Riesbeck Department of Psychiatry and Psychotherapy, Medical Faculty, Heinrich-Heine-University, LVR-Klinikum Düsseldorf, Düsseldorf, Germany Petter Andreas Ringen Specialized Inpatient Department, Gaustad, Division for Mental Health and Addiction, Oslo University Hospital, Oslo, Norway Contributors xiii

Judith Robertson “See Me”, Scottish Association for Mental Health, Glasgow, Scotland Wulf Rössler Psychiatric University Hospital, University of Zurich, Zurich, Switzerland Nicolas Rüsch Clinic for Psychiatry II, Section Public Mental Health, University of Ulm, Ulm, Germany Norman Sartorius Association for the Improvement of Mental Health Programmes, Geneva, Switzerland John Saunders See Change and Shine – Supporting People Affected by Mental Ill Health, Dublin, Ireland Shekar Saxena Department of Mental Health and Substance Abuse, World Health Organization, Geneva, Switzerland Georg Schomerus Department of Psychiatry, University of Greifswald, Greifswald, Germany Gwen Schulz Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Beate Schulze Research Unit for Clinical and Social Psychiatry, University of Zurich, Zürich, Switzerland Lindsay Sheehan Institute of Psychology, Illinois Institute of Technology, Chicago, IL, USA Geoff Shepherd Department of Health Services and Population Research, Institute of Psychiatry, University of London, London, UK ImROC Programme, Centre for Mental Health, London, UK Andrea Siegert Department of Psychiatry and Psychotherapy, Medical Faculty, Heinrich-Heine-University, LVR-Klinikum Düsseldorf, Düsseldorf, Germany Gyöngyver Sielaff Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Heather Stuart Centre for Health Services and Policy Research, Queen’s University, Kingston, ON, Canada Department of Public Health Sciences, Mental Health Commission of Canada, Ottawa, ON, Canada Andrew Szeto Department of Psychology, University of Calgary, Calgary, AB, Canada Graham Thornicroft Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK xiv Contributors

Magdalena Tyszkowska 3rd Department of Psychiatry, Institute of Psychiatry and Neurology, Warsaw, Poland Angela Urban Irre menschlich Hamburg e.V., Center for Psychosocial Medicine, University Medical Center Hamburg Eppendorf, Hamburg, Germany Anja Kara Vedelsby The National Campaign for Anti-stigma in Denmark, Danish Committee for Health Education, Copenhagen, Denmark Antonio Ventriglio Department of Clinical and Experimental Medicine, University of Foggia, Foggia, Italy Johannes Wancata Clinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of Vienna, Vienna, Austria

Richard Warner† Mental Health Center of Boulder County, Colorado Recovery, Boulder, CO, USA Danuta Wasserman Department of Public Health Sciences, NASP, Karolinska Institutet, Stockholm, Sweden Rob Whitley Department of Psychiatry, McGill University, Montréal, QC, Canada Ziyan Xu Department of Psychiatry II, University of Ulm, Ulm, Germany Harald Zäske Department of Psychiatry and Psychotherapy, Medical Faculty, Heinrich-Heine-University, LVR-Klinikum Düsseldorf, Düsseldorf, Germany Jürgen Zielasek Department of Psychiatry and Psychotherapy, Medical Faculty, Heinrich-Heine-University, LVR-Klinikum Düsseldorf, Düsseldorf, Germany Introduction

Wolfgang Gaebel, Wulf Rössler, and Norman Sartorius

There has always been a stigma around mental illness. But looking back to the last two centuries, which roughly cover the era of modern psychiatry, it was only for the last 60 years that the term stigma has developed from a quite undefined concept to a broadly used, well-described conception backed with facts from hundreds of scientific studies. In turn, the term stigma has become so popular that it became part of the everyday language. Denying mental illness, as it was popular during the times of antipsychiatry, is possibly an under-researched area of stigma. But stigma research in general has been a reaction of established psychiatry to antipsychiatry. Stigma research is rooted in social sciences, dealing with all kinds of social influences on the onset and course of mental illnesses. Surprisingly, stigma impacts on all areas of psychiatry starting with the disease model and diagnostic concept and the subsequent illness course, self-stigma and structural stigma, stigma in different disorders up to stigma through professionals. Stigma is in various forms prevalent in all cultures. Potentially everybody might be contributing to the stigma of mental illness. During the last half of the twentieth century, a dramatic institutional development has taken place. While the first half of the twentieth century was dominated by large and remote asylums, grossly neglected by public and health policy, there has been a significant increase in outpatient facilities and consecutively a likewise increase in patients. Today we know from epidemiology that about 40 % of the general population receive a lifetime diagnosis of a mental disorder (though only about one-third to one-half of these people receive treatment). Thus, everywhere everybody knows a person with a mental disorder. Nonetheless there have been almost no changes in levels of stigmatization in the general population in spite of the fact that a person we know and feel close to, i.e., a spouse, a relative, a friend, a colleague or a neighbour, might be affected from a mental disorder. And even worse, whenever something happens in the world where a mentally ill person may be involved, the level of stigma in the general population increases. One almost might get the impression that the fears associated with mental illnesses are deeply rooted in mankind, obviously more or less unchangeable and all efforts in vain. Most likely the best anti-stigma campaign would be to find a ‘cure’ against mental illness. This eventually could be possible if we address clearly illness entities. But this is not the case with mental illness. We find almost all symptoms of

xv xvi Introduction mental illnesses on a continuum and the majority of symptoms are below the threshold of a psychiatric diagnosis. There have been activities to change the name of schizophrenia, a disorder strongly associated with stigma because of its assumed dangerousness and unpredictability. This has happened in Japan and other Asian countries. There have been other efforts directed to the affected persons themselves like strengthening the recovery process and empowering the patients as well as the caregivers to take responsibility for their treatments. Users and caregivers have their own voice today. Further there have been efforts to bring together users, caregivers and providers of care to increase the mutual understanding. And there are efforts to promote the inclusion of the affected in the society. Far too much the institutional development has favoured the exclusion of the affected in the community. And finally there are promising programmes to reduce self-stigma. Many campaigns and programmes have been conducted all over the world aiming at a change of societal attitudes – and ultimately behaviours – towards the mentally ill. These activities have been a powerful tool to direct the public’s and specific target groups’ attention to stigma, discrimination and prejudice of mentally ill persons. Much has been published on the stigma of mental illness in recent years – including books on theoretical and practical issues, on ‘lessons learned’ and how to ‘fight’ stigma and discrimination (e.g. Arboleda-Flórez and Sartorius 2008; Corrigan et al. 2011; Gaebel et al. 2005; Stuart et al. 2012; Thornicroft 2006). Why then another compendium like this one? Although our understanding of mental illness has improved and we have numerous new options for the treatment of mental illnesses and a multitude of awareness campaigns and public information have taken place, the stigma of mental illness is still the main obstacle to the development of mental health services and a heavy burden for all touched by mental illness, people who have them, their families, mental health workers, mental health services and treatment methods. There is no ‘end of the story’ of fighting stigma in sight. During the last few decades, we have learned a lot from the various anti-stigma activities all over the world and our intention was to bring together knowledge and experience in the field, to make it more easily available for those who will continue to work on the prevention and reduction of stigma and for those who will want to learn more about the successes and failures in this field of work in recent years. A book with a scope like this one – a ‘reader’ – can only be selective both in the choice of topics and authors. Documents from a broader field of international agen- cies have not been acquired due to space restriction. Intentionally, overlap among the chapters was not avoided in keeping the individuality of contributions and for the sake of separate readability of the chapters, most of which are referenced in the recommendations section in the final chapter. Entitled The Stigma of Mental Illness: End of the Story?, this book is organized in seven chapters, each giving an overview on some of the above core developments and actions. This “Introduction” is followed by Part I including analyses of stigma and discrimination from different perspectives – ranging from history, science and Introduction xvii human rights to views by patients’ and family members’ organizations (see Chaps. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11 and 12). Part II presents a representative selection of current programmes and views on ‘fighting’ stigma and discrimination, covering programmes in different parts of the world (see Chaps. 13, 14, 15, 16, 17, 18, 19, 20, 21 and 22), followed by strategical considerations in Part III (Chaps. 23, 24, 25 and 26) and evaluative commentaries in Part IV (Chaps. 27, 28 and 29) with a focus on what has proven effective or not. Part V presents some new approaches to overcoming stigma and discrimination (see Chaps. 30, 31, 32, 33, 34, 35, 36 and 37) such as improving treatment; accepting and promoting the concept of recovery; renaming of schizophrenia; promoting the trialogue of contacts between mental health workers, families and mentally ill people; empowerment; and inclusion. It also presents notions about the reduction of the stigma associated with psychiatry and psychiatrists and describes the contribution of regional scientific associations or global health organizations like the WHO. The final chapter summarizes the current situa- tion, draws conclusions and presents recommendations for future action. We hope that this book will help in developing anti-stigma programmes and influence the way in which we interact with those affected by the illness and their families and contribute to a better understanding of our profession. We want to thank all the authors for their excellent contributions. We also thank Susanne Schaller for coordinating the manuscript handling and corresponding with the authors and Philip Barclay-Steuart for conducting the final editing process. Finally, we thank the publisher, in particular Corinna Schäfer, Dr. Sylvana Freyberg, and Wilma McHugh, for their flexible preparation for publishing.

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Arboleda-Flórez J, Sartorius N (2008) Understanding the stigma of mental illnes: theory and interventions, 1st edn. Wiley, West Sussex Gaebel W, Möller H-J, Rössler W (2005) Stigma – Diskriminierung – Bewältigung: Der umgang mit sozialer ausgrenzung psychisch kranker, 1st edn. Kohlhammer, Stuttgart Corrigan PW, Roe D, Tsang HWH (2011) Challenging the stigma of mental illness: lessons for therapists and advocates, 1st edn. Wiley, West Sussex Stuart H, Arboleda-Flórez J, Sartorius N (2012) Paradigms lost: fighting stigma and the lessons learned. Oxford University Press, New York Thornicroft G (2006) Shunned: discrimination against people with mental illness. Oxford University Press, New York