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In Review

Interventions to Reduce the Stigma Associated WithSevere Mental Illness: Experiences From the Open the

Doors Program in Germany

Wolfgang Gaebel, PhD1, Anja E Baumann, MA Phil

2

Key Words: stigma, schizophrenia, antistigma program, Germany, interventions, Open theDoors

Stigmatization of mentalillnesses in general and stigma as-

sociated 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 disadvan-

tage (1). The most common consequences of discrimination

for people with schizophrenia are social distancing, exclu-sion, and being disadvantaged in regard to housing and em-

ployment opportunities (compare, 24). The stigma of severe

mentalillnessexacerbatesthe patient burden causedby theill-

ness (5,6). Particularly in the case of schizophrenia, the bur-

den 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 men-

tal illness often do not accept professional help until a late

stage: the fear that they will be labelled simply because they

have received psychiatric treatmentis too great (5,8). Further,

the experience of stigma correlates with reduced self-esteem

and reduced life satisfaction (911). Stigmatization and dis-

crimination 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 atti-

tudes toward people with mental illness complicate the estab-lishment of community mental health services (13).

Disadvantages in social legislation and in health-insurance

practice also reflect stigmatization of people with mental ill-

ness (14).

Patients Experiences of Stigma

Surveys investigating patients experiences of stigma and dis-

crimination have shown that discrimination is most com-

monly experienced when they seek employment or in the

W Can J Psychiatry, Vol 48, No 10, November 2003 657

Stigma associated with mental illness and psychiatric treatment and the discrimination to-

ward people with mental illnesses that frequently results from this are main obstacles pre-

venting early and successful treatment. To reduce such stigma and discrimination,

especially toward people with schizophrenia, the World Psychiatric Association antistigma

program Open the Doors is currently being implemented in 27 countries. Since August

1999, the campaign has been executed in 7 project centres in Germany. Public information

programs and educative measures aimed at selected target groups should improve the

publics knowledge regarding symptomatology, causes, and treatment options for schizo-

phrenia and schizophreniform disorders. Improved knowledge should in turn abolish

prejudice and negative perceptions and facilitate the social reintegration of those suffering

from mental illness.

(Can J Psychiatry 2003;48:657662)

Information on funding and support and author affiliations appears at the end of the article.

Highlights

Interventions against stigma and discrimination toward those with mental illness can beeffective.

In addition to disseminating information about mental illness, special emphasis should beplaced on achieving a more positive media portrayal of people with mental illness and on pro -moting personal contact with them.


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workplace itself (15). According to interviewee statements,

colleagues and superiors are the main sources of discrimina-

tion. However, even psychiatric professional contact with

patients and relatives has to a certain extent been experienced

as discriminating.Lack of interest in the patientsbackground

and needs, exclusion of relatives fromtreatment planning, andtrivialization 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 mea-

sures to abolish stigmatization (19,20).

Attitudes and Social Distance of the Public in

Germany

Prejudices and stereotypes toward persons with mental illness

exist in the general population worldwide (1720). Depressivedisorders, 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 peo-

ple 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 unpre-

dictable and dangerous (19,20,24), a view that is also reflected

in media reports (25). People with drug dependency are simi-

larly 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

determineclear differences in theextent of socialdistancedis-

played for different psychiatric disorders (24). For example,

people withalcohol dependencyencounter the greatest degree

of rejection, followed by people with schizophrenia and peo-

ple with a narcissistic personality disorder. The least socialdistance was found in relation to people with major depres-

sion or panic disorder with agoraphobia. The same pattern

was shown for all the disorders investigated in this study: the

more intimatea proposed relationshipwas perceivedto 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 schizophre-

nia, carried out in 6 large German cities (19) in the framework

of the World Psychiatric Association (WPA) antistigma pro-

gram, Open the Doors. The surveywas partof a study ina resi-

dent project of the Germany-wide Research Network on

Schizophrenia,which is supported by the German FederalMinistry 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

almost16% said they would feel disturbed working alongside

someone with schizophrenia. One-third would be concerned

if a group of 6 to 8 peoplesuffering from schizophrenia moved

into their neighbourhood. More than 40% would be opposed

to sharing a room with a person with schizophrenia (for exam-

ple, in a hospital). Over 70% would not marry someone with

schizophrenia (Figure 1).

658

W Can J Psychiatry, Vol 48, No 10, November 2003

The Canadian Journal of PsychiatryIn Review

Would not marry someone with

schizophrenia

Feel afraid to have a conversation

with someone ...

Feel disturbed about working on thesame job with someone ...

Be unable to maintain a friendshipwith someone who has schizophrenia

Feel disturbed about rooming withsomeone who has schizophrenia

Feel ashamed if people knew someone

in your family was diagnosed withschizophrenia

definitely / probably" in %

0 20 40 60 80

Dsseldorf1187

Munich1278

Cologne1229

Bonn1163

Berlin1215

Essen1174

Dsseldorf1187

Munich1278

Cologne1229

Bonn1163

Berlin1215

Essen1174

Figure 1 Social distance toward people with schizophrenia


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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 pro-

posed 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 com-

parison of both studies has been undertaken by Gaebel and

others(20).A joint analysisof thedata is currentlyunderway.

The public opinion survey in Germany also showed that theamount of socialdistance depends on contact with people suf-

fering 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 thebehav-

iour 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 ill-

ness, 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 theclaims of relativesand user organi-

zations 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

Germany

The findings of the above-described surveys arealso reflected in the activities employed in the

framework of the German antistigma program,

Open the Doors. Education, protest, and contact

(27) arethe keyelementsof 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 edu-

cation in the training of health care providers,

initiating educational activities in the general

public and specific targetgroups, and promotingsocial 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

WPAprogram.We also describe thefindingsfrom theevalua-

tion of selected interventions.

In autumn 2000, the following 7 German project centres

joined to becomethe Open theDoors Society: Hamburg,Kiel,

Itzehoe, Leipzig, Dsseldorf, and Munich (2 centres)

(Table 2). Each centre has developed its own interventions;

joint activities are coordinated from the Dsseldorf centre.

C en tr es i n D s s el do rf a nd M un ic h ( Lu d wi g-Maximilians-University [LMU]) are evaluating their mea-

sures within the framework of the German Research Network

on Schizophrenia.

The second Munich project groupthe Bavarian Antistigma

Action (BASTA), located at the Technical Universityis an

action group of psychiatric patients, their relatives, and psy-

chiatric professionals who have combined to tackle discrimi-

nation toward people with mental illness in society (the

strategy employed is protest). Various projects provide the

public and specific targetgroups with information about men-

tal illnesses (for example, in workshops with the police fac-

ulty 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 deal-

ing with mental illness patients and to providing information

that will abolish fears and uncertainties. As with allantistigma

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

Interventions to Reduce the Stigma Associated With Severe Mental Illness: Experiences From the Open the Doors Program in Germany

Can J Psychiatry, Vol 48, No 10, November 2003 W 659

Table 1 Comparison of public attitudes in 6 German cities and inAlberta, Canada

Germany2001

(n = 7246) %

Alberta19981999

(n = 1653) %

People who know causes for schizophrenia 34 67

Patients suffer from split personality 80 47

Patients need prescription drugs 76 83

Patients can be treated with psychotherapy(without medication)

45 33

Patients can work in regular jobs 52 72

Patients are dangerous to the public 18 17

Social distance; for example,

Would not marry someone withschizophrenia

72 75

Unable to maintain a friendship 22 18


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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 discriminat-

ing behaviour (for example, by withdrawing an offending

advertisement).

To tacklestigma 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 theissue. Thechildrenreflect on their knowledgeand their attitudes and, in doing so, are prepared to meet peo-

ple with mental illness. During conversations with affected

persons, the schoolchildren are able to examine their attitudes

and develop their understanding of the consequences of men-

tal illnesses and what life is like for someone with a mental

illness.

As mentioned, the project centres in Dsseldorf and Munich

(LMU) carry outand evaluate theWPA antistigma program in

cooperation with research projects of the nationwide

Research Network on Schizophrenia. The interventions in

Dsseldorf andMunich targetboth thegeneral publicand spe-

cific groups having close contact with schizophrenia suffer-

ers. 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, draw-

ings by Gnther Grass (German writer and Nobel Prize win-

ner 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

Dsseldorf and followed by podium discussions.

Effects and Effectiveness of Antistigma

Interventions: The White Noise

On January 22, 2002, the Dsseldorf research group pre-

viewed the feature film The White Noise. The film portrays a

young manwithmental illness and his subjective experiences:

it tells the story of Lukas, who develops paranoid hallucina-

tory 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. Thefilm was shot with a digital hand camerato

capture Lukas perspective. It consists of striking documen-

tary images that directly involve viewers in the psychotic

experience. Through this presentation and through the appli-

cation of dramatic sound effects that simulate hallucinations,

viewers experience an intense and partly frightening close-

ness to the actor and the story. The film won several awards,

including the Max-Ophuls Prize in 2001. Daniel Brhl, the

main actor, was awarded with the German film prize in 2002

for best main actor.

Approximately 200 spectators attended the event. Most par-

ticipants (70%) had been invited by Open the Doors

Dsseldorf; 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 films 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 everypublic-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 under-

standing. Nevertheless, some negative stereotypes were

strengthened, and social distancing increased (Figure 2) (29).

660



Table 2 Open the Doors in Germanyproject centres and target groups

Students andteachers

Healthprofessionals

Police Journalists Public

Dsseldorf l l l l

Mnchen (2) l l l l

Leipzigl l l

Hamburg l l

Kiel l

Itzehoe l


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Thefilmdid nothave thedesirable effectof reducing stigmati-

zation and discrimination toward people with mental illness.

One reason for the increased negative stereotypes and social

distance felt by the audience toward people with schizophre-

nia may be that this film focuses on the protagonists subjec-

tive psychotic experience and behaviour; viewers may have

felt threatened by the closeness to the central character pro-

duced by the creative means mentioned above. Presumably,

films dealing more with coping with life after psychotic

crisesthat is to say, with reintegration and rehabilita-tionwill affect audiences more positively. Films can effec-

tively inform about mental illnesses, which in turn increases

attention to and empathy for people with mentalillness. How-

ever, 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.

Summary

One of the main obstacles to successful treatment of schizo-

phrenia is the stigma frequently associated with the disorder.

A diagnosis of schizophrenia and the disorders 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 atti-

tudes in the general population as well as in

specific target groups, such as those

employed in mentalhealth care. In additionto providing information about the nature,

causes, and treatment of mental disorders,

interventions should place special empha-

sison achieving a more positive media por-

trayal of people with mental illness and on

promoting personal contact with them.

Information on the disorder and on the fac-

tors 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 peoplehaving mental illnessfor instance,during

open days at psychiatric institutionsand

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

Personnel

Medical personnel, including psychiatrists, are often impor-

tant 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,patientsand

their families have experienced discrimination from psychiat-

ric personnel. Therefore, between 2003 and 2005, a focus of

the Dsseldorf project centre will rest on interventions with

personnel in psychiatric institutions. Working with the advi-

sor 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 toreduce 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.

Acknowledgements

The antistigma interventions of the German project centres arepart of the World Psychiatric Association global antistigma pro-gram, Fighting Stigma and Discrimination Because of Schizophre-

Interventions to Reduce the Stigma Associated With Severe Mental Illness: Experiences From the Open the Doors Program in Germany

Can J Psychiatry, Vol 48, No 10, November 2003 W 661

1,0

1,5

2,0

2,5

3,0

3,5

4,0

1 2 3 4 5 6

Socialdistance(Mean)

pre

post

definitely

probably

probably not

definitely not

Figure 2 Social distance before and after the film event


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nia Open the Doors. For further information on the WPAprogram, please visit the Web site: www.openthedoors.com.

Funding and Support

The interventions at the Dsseldorf and Munich centres are beingcarried out as part of a research project of the nationwide GermanResearch Network on Schizophrenia (www.kompetenznetz-schizophrenie.de), funded by the German Ministry of Educationand Research (Grant No. 01 GI 9932).

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Manuscript received and accepted August 2003.1Director, Department of Psychiatry and Psychotherapy, Heinrich-Heine-University, Dsseldorf, Germany.2Scientific Coordinator, Department of Psychiatry and Psychotherapy,

Heinrich-Heine-University, Dsseldorf, Germany.

Address for correspondence: Ms AE Baumann, Department of Psychiatryand Psychotherapy, Heinrich-Heine-University Dsseldorf, BergischeLandstrae 2, 40629 Dsseldorf, Germanye-mail: [email protected]

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Rsum : Interventions pour rduire les stigmates associs la maladie mentalegrave : expriences du programme Ouvrir les portes en Allemagne

Les stigmates associs la maladie mentale et au traitement psychiatrique, et la discrimination

lendroit des personnes souffrant de maladies mentales qui en rsulte souvent, sont les principaux ob-

stacles un traitement prcoce et russi. Pour rduire ces stigmates et cette discrimination, surtout

lgard des personnes souffrant de schizophrnie, le programme anti-stigmate de lAssociation

mondiale de psychiatrie, Ouvrir les portes, est prsentement mis en oeuvre dans 27 pays. Depuis aot

1999, la campagne a t mene dans 7 centres du projet en Allemagne. Des programmesdinformation du public et des mesures ducatives destins des groupes cibles choisis devraient

amliorer les connaissances du public sur la symptomatologie, les causes et les options de traitement

de la schizophrnie et des troubles schizophrniformes. De meilleures connaissances devraient leur

tour abolir les prjugs et les perceptions ngatives, et faciliter la rinsertion sociale des personnes

souffrant de maladies mentales.

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