L’objectif de l’étude INDIGO est de décrire et analyser les modèles de discrimination touchant des personnes ayant fait l’objet d’un diagnostic de troubles schizophréniques, ainsi que la relation entre discrimination anticipée et vécue. Il s’agit d’une étude transversale menée sous la forme d’entretiens réalisés par des professionnels de la santé mentale. Sept cent trente-deux personnes ayant un diagnostic clinique de « troubles schizophréniques », dans 28 pays, ont participé à l’étude en remplissant l’échelle d’évaluation de la discrimination et de la stigmatisation (Discrimination and Stigma Scale [DISC]). L’article présente les principaux résultats internationaux et français, une discussion méthodologique et une ouverture sur les effets positifs collatéraux de cette étude novatrice. On peut citer notamment : la reconnaissance des questions de stigmatisation et de discrimination et de leur vécu et perception par les usagers, des questionnements soulevés par l’annonce du diagnostic, des réflexions sur la « désignation » et « l’autodésignation », le développement d’un réseau international de recherches et d’actions dans ce domaine. Seulement 10 % des personnes interviewées ont vécu leur discrimination de manière positive. À travers tous les pays, les éléments les plus récurrents pour lesquels la discrimination a été vécue de manière négative étaient : pour se faire ou pour garder des amis ; auprès de la famille ; pour garder un emploi ; pour trouver un emploi ; dans le cadre de relations intimes ou sexuelles. Deux tiers des personnes interviewées, dont la majorité ont déclaré ne pas avoir vécu de discrimination concrète, ont fait état de discrimination anticipée.

The INDIGO study (INternational study of DIscrimination and stiGma Outcomes) aims at assessing the impact of schizophrenic disorders diagnosis on privacy, social and professional life, in terms of discrimination. In the general population, and even among health and social professionals, erroneous negative stereotypes (double personality, dangerosity) lead to high social distance. And this has an impact on various parts of daily life: employment, housing, compliance, self-esteem… About a tenth of the adult population suffers from mental disorders at any one time. These disorders now account for about 12% of the global impact of disability, and this will rise to 15% by the year 2020. People living with schizophrenia, for example, experience reduced social participation, whilst public images of mental illness and social reactions add a dimension of suffering, which has been described as a “second illness”. Stigmatizing attitudes and discriminatory behavior among the general population against people with severe mental illness are common in all countries. Globally, little is known of effective interventions against stigma. It is clear that the negative effects of stigma can act as formidable barriers to active recovery.

The INDIGO study intends to establish detailed international data on how stigma and discrimination affect the lives of people with a diagnosis of schizophrenia. The first aim of the INDIGO study is to conduct qualitative and quantitative interviews with 25 people with a diagnosis of schizophrenia in each participating site, to elicit information on how the condition affects their everyday lives, with a focus upon sites in Europe. The second is to gather data for all participating countries on the laws, policies and regulations which set a clear distinction between people with a diagnosis of mental illness and others, to establish an international profile of such discrimination. A new scale (Discrimination and Stigma Scale [DISC]), used in a face-to-face setting was developed. Interviewers asked service users to comment on how far their mental disorder has affected key areas of their lives, including work, marriage and partnerships, housing, leisure, and religious activities. For country-level information, staff at each national site gathered the best available data on whether special legal, policy or administrative arrangements are made for people with a diagnosis of mental illness. These items included, for example, information on access to insurance, financial services, driving licenses, voting, jury service, or travel visas. The INDIGO study is conducted within the framework of the WPA global program to fight stigma and discrimination because of schizophrenia. French interviews occurred in two sites (Lille and Nice) on a sample of 25 patients.

First, expressed disadvantages are high for several items (all relations, work and training, housing). In addition, we wish to highlight three specific points: almost half of the participants (46%) suffer from not being respected because of contacts with services, 88% of them felt rejected by people who know their diagnosis, and 76% hide/conceal their diagnosis. Positive experienced discrimination was rare. Two thirds of participants anticipated discrimination for job seeking and close personal relationships, sometimes with no experienced discrimination.

This study, one of the rare in France adopting the point of view of a stigmatized group, revealed the numerous impacts of a diagnosis of schizophrenic disorders on everyday life. Comparisons between French and international results confirmed that the situation is not different in France, and even highlighted the extent of the stigmatization in the country.