Daumerie N, Vasseur Bacle S, Giordana J-Y, Bourdais Mannone C, Caria A, Roelandt J-L
Centre collaborateur de l'Organisation mondiale de la santé pour la recherche et la formation en santé mentale, Lille, France.
Encephale. 2012 Jun;38(3):224-31. doi: 10.1016/j.encep.2011.06.007. Epub 2011 Aug 31.
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.
“靛蓝研究”(国际歧视与耻辱感结果研究)旨在评估精神分裂症诊断在歧视方面对隐私、社会生活和职业生活的影响。在普通人群中,甚至在卫生和社会专业人员中,错误的负面刻板印象(双重人格、危险性)导致了很大的社会距离。这对日常生活的各个方面都有影响:就业、住房、依从性、自尊……约十分之一的成年人口在任何时候都患有精神障碍。这些障碍目前约占全球残疾影响的12%,到2020年这一比例将升至15%。例如,精神分裂症患者的社会参与度降低,而精神疾病的公众形象和社会反应又增加了一层痛苦,这被描述为一种“第二种疾病”。在所有国家,普通人群对严重精神疾病患者的污名化态度和歧视行为都很常见。在全球范围内,对于消除耻辱感的有效干预措施知之甚少。显然,耻辱感的负面影响可能成为积极康复的巨大障碍。
“靛蓝研究”旨在建立关于耻辱感和歧视如何影响精神分裂症诊断患者生活的详细国际数据。“靛蓝研究”的首要目标是在每个参与地点对25名精神分裂症诊断患者进行定性和定量访谈,以获取关于病情如何影响他们日常生活的信息,重点是欧洲的地点。第二个目标是为所有参与国家收集关于明确区分精神疾病诊断患者和其他人的法律、政策和法规的数据,以建立这种歧视的国际概况。开发了一种在面对面环境中使用的新量表(歧视与耻辱感量表[DISC])。访谈者要求服务使用者评论他们的精神障碍在多大程度上影响了他们生活的关键领域,包括工作、婚姻和伴侣关系、住房、休闲和宗教活动。对于国家层面的信息,每个国家站点的工作人员收集了关于是否为精神疾病诊断患者做出特殊法律、政策或行政安排的最佳可用数据。这些项目包括,例如,关于获得保险、金融服务、驾驶执照、投票、陪审团服务或旅行签证的信息。“靛蓝研究”是在世界精神病学协会全球消除精神分裂症耻辱感和歧视项目的框架内进行的。在法国的两个地点(里尔和尼斯)对25名患者进行了访谈。
首先,在几个项目(所有关系、工作和培训、住房)中,所表达的不利情况很高。此外,我们想强调三个具体点:几乎一半的参与者(46%)因与服务机构接触而遭受不被尊重的待遇,其中88%的人感到被知道他们诊断情况的人拒绝,76%的人隐瞒他们的诊断。积极体验到的歧视很少见。三分之二的参与者预计在求职和亲密个人关系中会受到歧视,有时并没有体验到歧视。
这项研究是法国罕见的从被污名化群体角度进行的研究之一,揭示了精神分裂症诊断对日常生活的诸多影响。法国和国际结果的比较证实,法国的情况并无不同,甚至突出了该国污名化的程度。