Elaine Brohan

Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey

BACKGROUND Many people with schizophrenia experience stigma caused by other peoples knowledge, attitudes, and behaviour; this can lead to impoverishment, social marginalisation, and low quality of life. We aimed to describe the nature, direction, and severity of anticipated and experienced discrimination reported by people with schizophrenia. METHODS We did a cross-sectional survey in 27 countries, in centres affiliated to the INDIGO Research Network, by use of face-to-face interviews with 732 participants with schizophrenia. Discrimination was measured with the newly validated discrimination and stigma scale (DISC), which produces three subscores: positive experienced discrimination; negative experienced discrimination; and anticipated discrimination. FINDINGS Negative discrimination was experienced by 344 (47%) of 729 participants in making or keeping friends, by 315 (43%) of 728 from family members, by 209 (29%) of 724 in finding a job, 215 (29%) of 730 in keeping a job, and by 196 (27%) of 724 in intimate or sexual relationships. Positive experienced discrimination was rare. Anticipated discrimination affected 469 (64%) in applying for work, training, or education and 402 (55%) looking for a close relationship; 526 (72%) felt the need to conceal their diagnosis. Over a third of participants anticipated discrimination for job seeking and close personal relationships when no discrimination was experienced. INTERPRETATION Rates of both anticipated and experienced discrimination are consistently high across countries among people with mental illness. Measures such as disability discrimination laws might, therefore, not be effective without interventions to improve self-esteem of people with mental illness.

Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: The GAMIAN-Europe study

There is a growing interest in examining self-stigma as a barrier to recovery from schizophrenia. To date, no studies have examined mental health service users experiences of self-stigma throughout Europe. This study describes the level of self-stigma, stigma resistance, empowerment and perceived discrimination reported by mental health service users with a diagnosis of schizophrenia or other psychotic disorder across 14 European countries. Data were collected from 1229 people using a postal survey from members of mental health non-governmental organisations. Almost half (41.7%) reported moderate or high levels of self-stigma, 49.2% moderate or high stigma resistance, 49.7% moderate or high empowerment and 69.4% moderate or high perceived discrimination. In a reduced multivariate model 42% of the variance in self-stigma scores was predicted by levels of empowerment, perceived discrimination and social contact. These results suggest that self-stigma appears to be common and sometimes severe among people with schizophrenia or other psychotic disorders in Europe.

Experiences of mental illness stigma, prejudice and discrimination: a review of measures

BackgroundThere has been a substantial increase in research on mental illness related stigma over the past 10 years, with many measures in use. This study aims to review current practice in the survey measurement of mental illness stigma, prejudice and discrimination experienced by people who have personal experience of mental illness. We will identify measures used, their characteristics and psychometric properties.MethodA narrative literature review of survey measures of mental illness stigma was conducted. The databases Medline, PsychInfo and the British Nursing Index were searched for the period 1990-2009.Results57 studies were included in the review. 14 survey measures of mental illness stigma were identified. Seven of the located measures addressed aspects of perceived stigma, 10 aspects of experienced stigma and 5 aspects of self-stigma. Of the identified studies, 79% used one of the measures of perceived stigma, 46% one of the measures of experienced stigma and 33% one of the measures of self-stigma. All measures presented some information on psychometric properties.ConclusionsThe review was structured by considering perceived, experienced and self stigma as separate but related constructs. It provides a resource to aid researchers in selecting the measure of mental illness stigma which is most appropriate to their purpose.

Association between public views of mental illness and self-stigma among individuals with mental illness in 14 European countries

BACKGROUND Little is known about how the views of the public are related to self-stigma among people with mental health problems. Despite increasing activity aimed at reducing mental illness stigma, there is little evidence to guide and inform specific anti-stigma campaign development and messages to be used in mass campaigns. A better understanding of the association between public knowledge, attitudes and behaviours and the internalization of stigma among people with mental health problems is needed. METHOD This study links two large, international datasets to explore the association between public stigma in 14 European countries (Eurobarometer survey) and individual reports of self-stigma, perceived discrimination and empowerment among persons with mental illness (n=1835) residing in those countries [the Global Alliance of Mental Illness Advocacy Networks (GAMIAN) study]. RESULTS Individuals with mental illness living in countries with less stigmatizing attitudes, higher rates of help-seeking and treatment utilization and better perceived access to information had lower rates of self-stigma and perceived discrimination and those living in countries where the public felt more comfortable talking to people with mental illness had less self-stigma and felt more empowered. CONCLUSIONS Targeting the general public through mass anti-stigma interventions may lead to a virtuous cycle by disrupting the negative feedback engendered by public stigma, thereby reducing self-stigma among people with mental health problems. A combined approach involving knowledge, attitudes and behaviour is needed; mass interventions that facilitate disclosure and positive social contact may be the most effective. Improving availability of information about mental health issues and facilitating access to care and help-seeking also show promise with regard to stigma.

Reducing stigma and discrimination: Candidate interventions

This paper proposes that stigma in relation to people with mental illness can be understood as a combination of problems of knowledge (ignorance), attitudes (prejudice) and behaviour (discrimination). From a literature review, a series of candidate interventions are identified which may be effective in reducing stigmatisation and discrimination at the following levels: individuals with mental illness and their family members; the workplace; and local, national and international. The strongest evidence for effective interventions at present is for (i) direct social contact with people with mental illness at the individual level, and (ii) social marketing at the population level.

Self-stigma, empowerment and perceived discrimination among people with bipolar disorder or depression in 13 European countries: the GAMIAN-Europe study

BACKGROUND There is little information on the degree to which self-stigma is experienced by individuals with a diagnosis of bipolar disorder or depression across Europe. This study describes the levels of self-stigma, stigma resistance, empowerment and perceived discrimination reported in these groups. METHODS Data were collected from 1182 people with bipolar disorder or depression using a mail survey with members of national mental health non-governmental organisations. RESULTS Over one fifth of the participants (21.7%) reported moderate or high levels of self-stigma, 59.7% moderate or high stigma resistance, 63% moderate or high empowerment, and 71.6% moderate or high perceived discrimination. In a reduced multivariate model 27% of the variance in self-stigma scores, among people with a diagnosis of bipolar disorder or depression, was accounted for by levels of empowerment, perceived discrimination, number of areas of social contact, education and employment. LIMITATIONS Findings are limited by the use of an unweighted sample of members of mental health charity organisations which may be unrepresentative of the reference population. CONCLUSIONS These findings suggest that self-stigma occurs among approximately 1 in 5 people with bipolar disorder or depression in Europe. The tailoring of interventions to counteract (or fight against) the elements of self-stigma which are most problematic for the group, be they alienation, stereotype endorsement, social withdrawal or discrimination experience, may confer benefit to people with such disorders.

Development and psychometric evaluation of the Discrimination and Stigma Scale (DISC)

Mental illness is associated with unfair treatment in a number of areas of life. There is currently no psychometrically validated measure that has been developed to specifically focus on such experienced discrimination. This study aimed to finalise the Discrimination and Stigma Scale (DISC) and establish its psychometric properties. The DISC was further developed using (1) service user and interviewer focus groups; (2) reading ease testing; and (3) cognitive debriefing interviews. The revised scale then underwent psychometric testing to establish the following properties: reliability; validity; precision; acceptability; and feasibility. The final 22-item DISC demonstrated good psychometric properties (n=86) including inter-rater reliability (weighted kappa range: 0.62-0.95), internal consistency (α=0.78) and test-retest reliability (n=46) (weighted kappa range: 0.56-0.89). Feasibility, validity and acceptability were also established. In conclusion, the 22-item DISC is recommended for use in measuring experienced stigma and discrimination. Additional work to develop a measure of anticipated stigma is recommended.

Development and psychometric properties the Barriers to Access to Care Evaluation scale (BACE) related to people with mental ill health.

BackgroundMany people with mental illness do not seek or delay seeking care. This study aimed to develop, and provide an initial validation of, a comprehensive measure for assessing barriers to access to mental health care including a ‘treatment stigma’ subscale, and to present preliminary evidence about the prevalence of barriers experienced by adults currently or recently using secondary mental health services in the UK.MethodsThe Barriers to Access to Care Evaluation scale (BACE) was developed from items in existing scales, systematic item reduction, and feedback from an expert group. It was completed in an online survey by 117 individuals aged 18 and over who had received care from secondary mental health services in the past 12 months. Internal consistency, test-retest reliability, convergent validity (correlation of treatment stigma subscale with the Stigma Scale for Receiving Psychological Help (SSRPH) and with the Internalised Stigma of Mental Illness Scale (ISMI)), respondent opinion and readability were assessed.ResultsThe BACE items were found to have acceptable test-retest reliability as all but one of the items exceeded the criterion for moderate agreement. The treatment stigma subscale had acceptable test-retest-reliability and good internal consistency. As hypothesised the subscale was significantly positively correlated with the SSRPH and the ISMI demonstrating convergent validity. The developmental process ensured content validity. Respondents gave the BACE a median rating of 8 on the 10-point quality scale. Readability scores indicated the measure can be understood by the average 11 to 12 year-old. The most highly endorsed barrier was ‘concern that it might harm my chances when applying for jobs’. The scale was finalised into a 30-item measure with a 12-item treatment stigma subscale.ConclusionsThere is preliminary evidence demonstrating the reliability, validity and acceptability of the BACE. It can be used to ascertain key barriers to access to mental health care which may help to identify potential interventions to increase care seeking and service use. Further research is needed to establish its factor analytic structure and population norms.

Reported stigma and discrimination by people with a diagnosis of schizophrenia

Aims. This article examines the extent of stigma and discrimination as reported by people with a diagnosis of schizophrenia. The hypothesis is that when people express in their own words the discrimination they experience such discrimination will be found to be widespread. Methods. Seventy-five people with a diagnosis of schizophrenia from 15 different countries were interviewed with a mixed methods instrument to assess reported discrimination. The data were analysed for frequency counts and then a thematic analysis was performed. A conceptual map is provided. Results. The study was a cross-cultural one but, contrary to expectations, few transnational differences were found. The main hypothesis was supported. Conversely, we found that when participants reported ‘positive discrimination’, this could as easily be conceptualised as being treated similarly to how others in society would expect to be treated. Conclusion. Negative discrimination is ubiquitous and sometimes connotatively very strong, with reports of humiliation and abuse. ‘Positive discrimination’ conversely indicates that people with a mental illness diagnosis expect discrimination and are grateful when it does not occur. The literature on self-stigma is discussed and found wanting. Similarly, the theory that contact with mentally ill people reduces stigma and discrimination is not fully supported by our results.

Anticipated discrimination among people with schizophrenia

Üçok A, Brohan E, Rose D, Sartorius N, Leese M, Yoon CK, Plooy A, Ertekin BA, Milev R, Thornicroft G, the INDIGO Study Group. Anticipated discrimination among people with schizophrenia.