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Stigmatization of mental illnesses in general and stigma associated with schizophrenia in particular represent main obstacles to successful treatment. Ignorance, prejudice, and negative public attitudes toward people with schizophrenia and their relatives lead to a cycle of alienation and disadvantage (1). The most common consequences of discrimination for people with schizophrenia are social distancing, exclusion, and being disadvantaged in regard to housing and employment opportunities (compare, 2–4). The stigma of severe mental illness exacerbates the patient burden caused by the illness (5,6). Particularly in the case of schizophrenia, the burden of stigma often leads to chronic social impairment (7). As a result of the stigma associated with mental illness, and with schizophrenia in particular, people suffering from mental illness often do not accept professional help until a late stage: the fear that they will be labelled simply because they have received psychiatric treatment is too great (5,8). Further, the experience of stigma correlates with reduced self-esteem and reduced life satisfaction (9–11). Stigmatization and discrimination are directed at both the families and friends of people with mental illnesses, as well as at members of the helping professions (12). Additionally, negative public attitudes toward people with mental illness complicate the establishment of community mental health services (13). Disadvantages in social legislation and in health-insurance practice also reflect stigmatization of people with mental illness (14). Patients’ Experiences of StigmaSurveys investigating patients’ experiences of stigma and discrimination have shown that discrimination is most commonly experienced when they seek employment or in the workplace itself (15). According to interviewee statements, colleagues and superiors are the main sources of discrimination. However, even psychiatric professional contact with patients and relatives has to a certain extent been experienced as discriminating. Lack of interest in the patient’s background and needs, exclusion of relatives from treatment planning, and trivialization of patients’ and relatives’ viewpoints (16) have been mentioned in particular. It has been suggested that improved media representation of people with mental illness, education of the public about the disorder, and the chance to have personal contact with those affected are essential measures to abolish stigmatization (19,20). Attitudes and Social Distance of the Public in GermanyPrejudices and stereotypes toward persons with mental illness exist in the general population worldwide (17–20). Depressive disorders, for example, are regarded by lay people as less in need of treatment than schizophrenia and schizophreniform disorders (21). Underlying this belief is the prejudice that people with depression could get better if they wanted to and that they are lacking in discipline (22,23). Conversely, people affected with schizophrenia are frequently thought of as unpredictable and dangerous (19,20,24), a view that is also reflected in media reports (25). People with drug dependency are similarly affected by negative public opinion: they are often accused of being responsible for their situation (2). In another study, Angermeyer and Matschinger were able to determine clear differences in the extent of social distance displayed for different psychiatric disorders (24). For example, people with alcohol dependency encounter the greatest degree of rejection, followed by people with schizophrenia and people with a narcissistic personality disorder. The least social distance was found in relation to people with major depression or panic disorder with agoraphobia. The same pattern was shown for all the disorders investigated in this study: the more intimate a proposed relationship was perceived to be, the greater was the desired social distance. These findings have been confirmed by the results of a public opinion survey regarding attitudes to people with schizophrenia, carried out in 6 large German cities (19) in the framework of the World Psychiatric Association (WPA) antistigma program, Open the Doors. The survey was part of a study in a resident project of the Germany-wide Research Network on Schizophrenia,which is supported by the German Federal Ministry of Education and Research. In the survey, only approximately 10% of the 7246 interviewees admitted to being afraid of talking to someone with schizophrenia, but almost 16% said they would feel disturbed working alongside someone with schizophrenia. One-third would be concerned if a group of 6 to 8 people suffering from schizophrenia moved into their neighbourhood. More than 40% would be opposed to sharing a room with a person with schizophrenia (for example, in a hospital). Over 70% would not marry someone with schizophrenia (Figure 1). Figure 1 Social distance toward people with schizophrenia The results concerning social distance are similar to those of a study carried out by a Canadian research group, which also conducted a public survey in the framework of the Open the Doors program (17). Both studies show that the extent of social distance increases with increasing intimacy of the proposed relationship. That means the more close and private the imagined situation is, the more rejection of people with schizophrenia is to be expected (Table 1). An extensive comparison of both studies has been undertaken by Gaebel and others (20). A joint analysis of the data is currently underway.
The public opinion survey in Germany also showed that the amount of social distance depends on contact with people suffering from mental illness. People who know someone with schizophrenia or who are themselves affected feel less social distance than people who have no such contact or are not affected themselves. The extent of social distance also depends on knowledge. People knowing less about the behaviour and symptoms associated with schizophrenia, or about treatment options for schizophrenia, show more social distance. Respondents believed that the most valuable intervention would be more education and information about mental illness, followed by more positive media portrayals and reports of people with mental illness. Changes in legislation as a means of intervention were thought to be important by 45% of all respondents. Even though this recommendation is rated lowest, and also taking into account possible effects of social desirability, it supports the claims of relatives and user organizations to equal opportunities for people with mental illness (26). A large section of those interviewed expressed the view that the opportunity to have personal contact with people suffering from mental illness is an important measure to promote their acceptance by the public. Open the Doors Program in GermanyThe findings of the above-described surveys are also reflected in the activities employed in the framework of the German antistigma program, Open the Doors. Education, protest, and contact (27) are the key elements of antistigma strategies recommended by the WPA. These antistigma strategies include improving psychiatric care and psychoeducation of patients and families, involving patients and family members in all antistigma activities, including antistigma education in the training of health care providers, initiating educational activities in the general public and specific target groups, and promoting social and legal action to reduce discrimination (4). In the following report, we describe how these strategies are employed in the German project centres participating in the WPA program. We also describe the findings from the evaluation of selected interventions. In autumn 2000, the following 7 German project centres joined to become the Open the Doors Society: Hamburg, Kiel, Itzehoe, Leipzig, Düsseldorf, and Munich (2 centres) (Table 2). Each centre has developed its own interventions; joint activities are coordinated from the Düsseldorf centre. Centres in Düsseldorf and Munich (Ludwig- Maximilians-University [LMU]) are evaluating their measures within the framework of the German Research Network on Schizophrenia.
The second Munich project group—the Bavarian Antistigma Action (BASTA), located at the Technical University—is an action group of psychiatric patients, their relatives, and psychiatric professionals who have combined to tackle discrimination toward people with mental illness in society (the strategy employed is “protest”). Various projects provide the public and specific target groups with information about mental illnesses (for example, in workshops with the police faculty from the Bavarian training college for civil servants, where the strategy emplyed is “education”). This cooperation aims to sensitize police officers to particular aspects of dealing with mental illness patients and to providing information that will abolish fears and uncertainties. As with all antistigma interventions, this project will offer personal contact with people affected by mental illness (employing the strategy of “contact”). Using the Australian Stigma Alarm Network (SANE) (28) as a model, this action group also initiated the Internet-based SANE, which facilitates reporting of discrimination against those with mental illness (for example, in advertisements or press reports). After the facts have been investigated, members of BASTA attempt, through direct contact, to persuade the author to discontinue the discriminating behaviour (for example, by withdrawing an offending advertisement). To tackle stigma and discrimination in rural areas, activities in Itzehoe and Kiel focus on establishing a network of sufferers and their relatives, professionals, and decision-makers within the political arena and society in general. The project groups in Hamburg and Leipzig provide information based on focus issues in schools. For example, a public relations association in psychiatry was founded; one initiative is the school project Crazy? So What! (16). The school project promotes direct contact between young people and mental illness sufferers during project days or weeks in which schoolchildren are first sensitized to the issue. The children reflect on their knowledge and their attitudes and, in doing so, are prepared to meet people with mental illness. During conversations with affected persons, the schoolchildren are able to examine their attitudes and develop their understanding of the consequences of mental illnesses and what life is like for someone with a mental illness. As mentioned, the project centres in Düsseldorf and Munich (LMU) carry out and evaluate the WPA antistigma program in cooperation with research projects of the nationwide Research Network on Schizophrenia. The interventions in Düsseldorf and Munich target both the general public and specific groups having close contact with schizophrenia sufferers. One example of an intervention targeted at the public was a recent art exhibition by the Munich antistigma work group, Antistigma Action Munich (ASAM). In January 2002, drawings by Günther Grass (German writer and Nobel Prize winner in literature) were shown, and the film The White Noise was screened. Other activities included theatre evenings. For example, in December 2002, the piece 4.48 Psychosis, by Sarah Kane, was presented in the city theater hall in Düsseldorf and followed by podium discussions. Effects and Effectiveness of Antistigma Interventions: The White NoiseOn January 22, 2002, the Düsseldorf research group previewed the feature film The White Noise. The film portrays a young man with mental illness and his subjective experiences: it tells the story of Lukas, who develops paranoid hallucinatory schizophrenia following drug consumption. The acute psychotic experience of the protagonist is at the forefront of the film, portrayed through the application of specialized technical aids. The film was shot with a digital hand camera to capture Lukas’ perspective. It consists of striking documentary images that directly involve viewers in the psychotic experience. Through this presentation and through the application of dramatic sound effects that simulate hallucinations, viewers experience an intense and partly frightening closeness to the actor and the story. The film won several awards, including the Max-Ophuls Prize in 2001. Daniel Brühl, the main actor, was awarded with the German film prize in 2002 for best main actor. Approximately 200 spectators attended the event. Most participants (70%) had been invited by Open the Doors Düsseldorf; the rest had heard about the event through the press, posters, or the Internet. The film was followed by a podium discussion with people suffering from mental illness, their relatives, and psychiatrists, as well as the film’s director. A questionnaire was distributed among the audience before the film was shown; this was to be completed both before and after the event. Of 182 questionnaires distributed, 113 could be used for evaluation (return rate, 62%). The evaluation showed that not every public-oriented antistigma intervention obtains the desired effect exclusively. On the whole, viewers evaluated the event as positive. Most viewers (n = 113) believed that they could empathize better with schizophrenia sufferers as a result of the event and reported increased understanding. Nevertheless, some negative stereotypes were strengthened, and social distancing increased (Figure 2) (29). Figure 2 Social distance before and after the film event The film did not have the desirable effect of reducing stigmatization and discrimination toward people with mental illness. One reason for the increased negative stereotypes and social distance felt by the audience toward people with schizophrenia may be that this film focuses on the protagonist’s subjective psychotic experience and behaviour; viewers may have felt threatened by the closeness to the central character produced by the creative means mentioned above. Presumably, films dealing more with coping with life after psychotic crises—that is to say, with reintegration and rehabilitation—will affect audiences more positively. Films can effectively inform about mental illnesses, which in turn increases attention to and empathy for people with mental illness. However, authentic films can also give rise to negative attitudes and fear, thereby increasing social distance. It is therefore important that, in addition to information, such antistigma interventions also provide audiences with an opportunity for personal contact with mentally ill people. The great interest in this film evening shows that such public-oriented measures, carried out within the framework of an antistigma campaign, meet the need for education and exchange about the illness. The long-term influence of public-based antistigma activities, together with their effects at illness onset and during illness course, should therefore be the object of further investigation. SummaryOne of the main obstacles to successful treatment of schizophrenia is the stigma frequently associated with the disorder. A diagnosis of schizophrenia and the disorder’s perceptible characteristics can mean that the heterogeneity of behaviour attributable to the illness is negatively judged and leads to social exclusion and disadvantage. Educative and training programs such as Open the Doors can improve knowledge of mental illness and modify negative attitudes in the general population as well as in specific target groups, such as those employed in mental health care. In addition to providing information about the nature, causes, and treatment of mental disorders, interventions should place special emphasis on achieving a more positive media portrayal of people with mental illness and on promoting personal contact with them. Information on the disorder and on the factors underlying its stigmatization should reach relatives, friends, colleagues, and superiors, as well as physicians, therapists, and nursing staff. The frequently expressed desire for more encounters with people having mental illness—for instance, during open days at psychiatric institutions—and for more art exhibitions or theatrical productions involving those with mental illness are in line with the German antistigma program interventions. Outlook: Interventions Directed at Medical PersonnelMedical personnel, including psychiatrists, are often important sources of stigmatization. Interventions directed at this target group may cost less but be more effective than inter- ventions directed at the general public (30). As the mentioned patient surveys and focus interviews have shown, patients and their families have experienced discrimination from psychiatric personnel. Therefore, between 2003 and 2005, a focus of the Düsseldorf project centre will rest on interventions with personnel in psychiatric institutions. Working with the advisor from the Swiss Open the Doors group, researchers will record and compare the attitudes of those in the German and Swiss psychiatric care services toward people with mental illness. They will also use patient questionnaires to collect experiences of stigma and discrimination. From the survey findings, they will develop and evaluate interventions to reduce stigma. Modules of the interventions that successfully reduce stigma and discriminating behaviour by psychiatrists, nursing staff, and other employees in psychiatric care service should, as should all parts of the program, be useful for antistigma interventions worldwide. AcknowledgementsThe antistigma interventions of the German project centres are part of the World Psychiatric Association global antistigma program, Fighting Stigma and Discrimination Because of Schizophrenia— Open the Doors. For further information on the WPA program, please visit the Web site: www.openthedoors.com. Funding and SupportThe interventions at the Düsseldorf and Munich centres are being carried out as part of a research project of the nationwide German Research Network on Schizophrenia (www.kompetenznetz-schizophrenie.de), funded by the German Ministry of Education and Research (Grant No. 01 GI 9932). References1. Sartorius N. One of the last obstacles to better mental health care: the stigma of mental illness. In: Guimón J, Fischer W, Sartorius N, editors. The image of madness. Basel: Karger; 1999. p 96–104. 2. Crisp AH, Gelder MG, Rix S, Meltzer HI, Rowlands OJ. Stigmatisation of people with mental illnesses. Br J Psychiatry 2000;177:4–7. 3. Link BG. Die Folgen des sozialen Stigmas für das Schicksal psychisch Kranker. ZNS Journal 2000;21:32–41. 4. World Psychiatric Association. Fighting stigma and discrimination because of schizophrenia. New York: World Psychiatric Association; 1998. 5. Link BG, Struening EL, Rahav M, Phelan JC, Nuttbrock L. On stigma and its consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. J Health Soc Behav 1997;38:177–90. 6. Wiersma D, van Busschbach J. Are needs and satisfaction of care associated with quality of life? Eur Arch Psychiatry Clin Neurosci 2001;251:239–46. 7. An der Heiden W, Häfner H. The epidemiology of onset and course of schizophrenia. Eur Arch Psychiatry Clin Neurosci 2000;250:292–303. 8. Link BG, Cullen FT, Struening E, Shrout PE, Dohrenwend BP. A modified labeling theory approach to mental disorders: an empirical assessment. Am Sociol Rev 1989;54:400–23. 9. Markowitz FE The effects of stigma on the psychological well-being and life satisfaction of persons with mental illness. J Health Soc Behav 1998;39: 335–47. 10. Wahl OF. Mental health consumer’s experience of stigma. Schizophr Bull 1999;25:467 78. 11. Dickerson FB, Sommerville J, Origoni AE, Ringel NB, Parente F. Experiences of stigma among outpatients with schizophrenia. Schizophr Bull 2002;28:143–55. 12. Schulze B. Stigmatisierungserfahrungen schizophren Erkrankter und ihrer Angehörigen: Ergebnisse einer bundesweiten Fokusgruppenstudie. ZNS Journal 2000;21:3–12. 13. Rössler W, Salize HJ, Voges B. Does community-based care have an effect on public attitudes toward the mentally ill? Eur Psychiatry 1995;10:282–9. 14. Häfner H. Stigma, Diskriminierung und die Folgen. In: Rätsel Schizophrenie. Eine Krankheit wird entschlüsselt. München: Beck; 2000. p 171–80. 15. Gaebel W, Baumann A, Witte M. [Patientenerleben von Stigmatisierung und Diskriminierung, 2001.] Unpublished manuscript. Located at: Department of Psychiatry and Psychotherapy, Heinrich-Heine-University, Düsseldorf, Germany. 16. Schulze B, Angermeyer MC. Subjective experiences of stigma. A focus group study of schizophrenic patients, their relatives and mental health professionals. Soc Sci Med 2003;56:299–312. 17. Stuart H, Arboleda-Flôrez J. Community attitudes toward people with schizophrenia. Can J Psychiatry 2001;46:245–52. 18. Thompson AH, Stuart H, Bland R, Arboleda-Florez J, Warner R, Dickson RA. Attitudes about schizophrenia from the pilot site of the WPA worldwide campaign against the stigma of schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2002;37:475–82. 19. Gaebel W, Baumann A, Witte M. Einstellungen der Bevölkerung gegenüber schizophren Erkrankten in sechs bundesdeutschen Großstädten. Nervenarzt 2002;73:665–70. 20. Gaebel W, Baumann A, Witte M, Zäske H. Public attitudes towards people with mental illness in six German cities. Results of a public survey under special consideration of schizophrenia. Eur Arch Psychiatry Clin Neurosci 2002;252:278–87. 21. Lauber C, Nordt C, Falcato L, Rössler W. Behandlungsvorstellungen der Bevölkerung zu Depression und Schizophrenie. Neuropsychiatrie 2002;16:93–6. 22. McNair BG, Highet NJ, Hickie IB, Davenport TA. Exploring the perspectives of people whose lives have been affected by depression. MJA 2002;176:S69–S76. 23. Althaus D, Hegerl U. Aufklärungskampagne “Nürnberger Bündnis gegen Depression.” Mit Kinospots und Flyern Vorurteile bekämpfen. Münchner Medizinische Wochenzeitschrift Fortschrift Med 2003;145:42–4. 24. Angermeyer MC, Matschinger H. Soziale Distanz der Bevölkerung gegenüber psychisch Kranken. Gesundheitswesen 1996;58:18–24. 25. Condren RM, Byrne P. The psychothriller strikes again. BMJ 2000;320:1282. 26. Brill KE. Barrierefreiheit auch für seelisch behinderte Menschen? Psychosoziale Umschau 2002;17(2):16–7. 27. Penn DL, Shannon MC. Strategies for reducing stigma towards persons with mental illness. World Psychiatry 2002;1:20–1. 28. Rosen A, Walter G, Casey D, Hocking B. Combating psychiatric stigma: an overview of contemporary initiatives. Australiasian Psychiatry 2000;8: 19–26. 29. Baumann A, Zäske H, Gaebel W. Das Bild psychisch Kranker im Spielfilm: Auswirkungen auf Wissen, Einstellungen und soziale Distanz am Beispiel des Spielfilms “Das weiße Rauschen.” Psychiatr Praxis 2003. Forthcoming. 30. Sartorius N. Fighting stigma: theory and practice. World Psychiatry 2002;1:26–7 Author(s)Manuscript received and accepted August 2003. 1. Director, Department of Psychiatry and Psychotherapy, Heinrich- Heine-University, Düsseldorf, Germany. 2. Scientific Coordinator, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University, Düsseldorf, Germany. Address for correspondence: Ms AE Baumann, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University Düsseldorf, Bergische Landstraße 2, 40629 Düsseldorf, Germany e-mail: baumanna@uni-duesseldorf.de
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