Coping with stigma and discrimination: evidence from mental health service users in England.

AIMS: Mental health stigma and discrimination are significant problems. Common coping orientations include: concealing mental health problems, challenging others and educating others. We describe the use of common stigma coping orientations and explain variations within a sample of English mental health service users. METHODS: Cross-sectional survey data were collected as part of the Viewpoint survey of mental health service users' experiences of discrimination (n = 3005). Linear regression analyses were carried out to identify factors associated with the three stigma coping orientations. RESULTS: The most common coping orientation was to conceal mental health problems (73%), which was strongly associated with anticipated discrimination. Only 51% ever challenged others because of discriminating behaviour, this being related to experienced discrimination, but also to higher confidence to tackle stigma. CONCLUSIONS: Although stigma coping orientations vary by context, individuals often choose to conceal problems, which is associated with greater anticipated and experienced discrimination and less confidence to challenge stigma. The direction of this association requires further investigation.

Experience of the Time to Change programme in England as predictor of mental health service users' stigma coping strategies.

AIMS: In the field of stigma research, an area of interest is the coping strategies that mental health service users can use in response to discriminatory experiences. As a part of the evaluation of the Time to Change (TTC) anti-stigma programme, the Viewpoint telephone survey was run annually in order to assess service users' reported levels of discrimination and selected coping strategies. The study aim is to test the extent to which experience of TTC programme is a positive predictor of selected coping strategies. METHODS: Telephone interview surveys carried out by peer interviewers were conducted annually. 'Educating others' and 'challenging' coping strategies were assessed alongside anticipated and experienced discrimination. RESULTS: During 2011-2014, 3903 mental health service users were interviewed. Participants more often adopted the 'educating others' strategy (2.31 ± 0.01) than the 'challenging' strategy (2.15 ± 0.02) (p < 0.001). On the other hand, those who participated in campaign activities endorsed 'challenging' more frequently than people who were not aware of TTC (2.78 ± 1.23 v. 2.09 ± 1.08, p < 0.001). According to the multi-variate linear regression model, we found that being actively involved in TTC activities (OR = 0.74, CI: 0.29-1.19; p < 0.05), having a diagnosis of a depressive disorder (OR = 0.20, CI: 0.04-0.36; p < 0.05) or personality disorder (OR = 0.23, CI: 0.04-0.43; p < 0.05) were good predictors of endorsing a 'challenging' strategy even after adjusted for confounding variables. CONCLUSIONS: A positive relationship between participating in the TTC programme and using the 'challenging' strategy was found. There is still a need to disentangle the complex association between these two coping strategies and the role of anti-stigma campaigns, promoting further local activities led by service users and carers' as well as all others stakeholders' associations.

Viewpoint survey of mental health service users' experiences of discrimination in England 2008-2014.

OBJECTIVE: Discrimination reported by mental health service users in England is high. The study aims to determine changes in mental health-related discrimination from 2008 to 2014. METHODS: Samples of mental health service users were interviewed from 2008 to 2014 using the Discrimination and Stigma Scale version 12. Social capital in terms of access to social resources is a marker of discrimination in terms of effects on social connections, and so from 2011, social capital also measured using the Resource Generator-UK. RESULTS: Fewer participants reported discrimination in one or more life areas in 2014 compared to 2008 (OR: 0.58, 95% CI 0.36 to 0.94 P = 0.03). A weighted multiple regression model found a decrease in overall discrimination in 2014 compared to 2008 (mean difference: -13.55, 95% CI: -17.32 to -9.78, P < 0.001). There was not a consistent in discrimination decline between each year. No differences in access to social resources were found. CONCLUSIONS: Discrimination has fallen significantly over 2008-2014, although there was not a consistent decline between years. There is no evidence that social capital has increased.

Qualitative analysis of mental health service users' reported experiences of discrimination.

OBJECTIVE: To better understand mental health service users' experiences of stigma and discrimination in different settings. METHOD: An annual telephone survey of people with a mental health diagnosis conducted to evaluate the Time to Change antistigma campaign in England. Of 985 people who participated in 2013, 84 took part in a qualitative interview which was audio recorded. Of these, 50 interviews were transcribed and thematically analysed to explore accounts of discrimination. We analysed common types of behaviour; motivations ascribed to the discriminators; expectations of what fair treatment would have been; and the impact of discrimination on participants. RESULTS: Discrimination was most common in five contexts: welfare benefits, mental health care, physical health care, family and friends. Participants often found it hard to assess whether a behaviour was discriminatory or not. Lack of support, whether by public services or by friends and family, was often experienced as discrimination, reflecting an expectation that positive behaviours and reasonable adjustments should be offered in response to mental health needs. CONCLUSION: The impact of discrimination across different settings was often perceived by participants as aggravating their mental health, and there is thus a need to treat discrimination as a health issue, not just a social justice issue.

Public knowledge, attitudes, social distance and reported contact regarding people with mental illness 2009-2015.

OBJECTIVE: To investigate whether public knowledge, attitudes, desire for social distance and reported contact in relation to people with mental health problems have improved in England during the Time to Change (TTC) programme to reduce stigma and discrimination 2009-2015. METHODS: Using data from an annual face-to-face survey of a nationally representative sample of adults, we analysed longitudinal trends in the outcomes with regression modelling using standardised scores of the measures overall and by age and gender subgroups. RESULTS: There were improvements in all outcomes. The improvement for knowledge was 0.17 standard deviation units in 2015 compared to 2009 (95% CI 0.10, 0.23); for attitudes 0.20 standard deviation units (95% CI 0.14, 0.27) and for social distance 0.17 standard deviation units (95% CI 0.11, 0.24). Survey year for 2015 vs. 2009 was associated with a higher likelihood of reported contact (OR 1.32, 95% CI 1.13, 1.53). Statistically significant interactions between year and age suggest the campaign had more impact on the attitudes of the target age group (25-45) than those aged over 65 or under 25. Women's reported contact with people with mental health problems increased more than did men's. CONCLUSION: The results provide support for the effectiveness of TTC.

The economic costs of mental health-related discrimination.

OBJECTIVE: To estimate and compare the economic costs of mental health-related discrimination in the domains of health care, relationships and participation in leisure activities in England between 2011 and 2014. METHOD: A subsample of the Viewpoint survey was interviewed using the Costs of Discrimination Assessment Questionnaire in 2011 and 2014. Information on the impact of discrimination on healthcare use, help seeking from family and friends and participation in leisure activities was recorded. Pattern of contacts, costs and predictor of costs were examined. RESULTS: Our findings showed higher costs of health service use for individuals who reported experiences of discrimination in healthcare settings in 2011 compared with those who did not (mean difference £625, P-value 0.019). Individuals who reported experiences of discrimination in relationships in 2014 had higher healthcare costs than those who did not (mean difference £418, P -value 0.034). There was some evidence of a reduction in overall levels of healthcare use, leisure activities and support from families over time. Discrimination did not significantly affect help seeking from family/friends or leisure activities. CONCLUSION: There is some evidence that discrimination is related to increased healthcare costs. A prospective study is needed to better understand the consequences of these effects.

Factors associated with experienced discrimination among people using mental health services in England.

BACKGROUND: Research has found considerable variation in how far individuals with a diagnosis of mental illness experience discrimination. AIMS: This study tested four hypotheses: (i) a diagnosis of schizophrenia will be associated with more discrimination than depression, anxiety or bipolar disorder; (ii) people with a history of involuntary treatment will report more discrimination than people without; (iii) higher levels of avoidance behaviour due to anticipated discrimination will be associated with higher levels of discrimination and (iv) longer time in contact with services will be associated with higher levels of discrimination. METHOD: Three thousand five hundred and seventy-nine people using mental health services in England took part in structured telephone interviews about discrimination experiences. RESULTS: A multiple regression model found that study year, age, employment status, length of time in mental health services, disagreeing with the diagnosis, anticipating discrimination in personal relationships and feeling the need to conceal a diagnosis from others were significantly associated with higher levels of experienced discrimination. CONCLUSION: Findings suggest that discrimination is not related to specific diagnoses but rather is associated with mental health problems generally. An association between unemployment and discrimination may indicate that employment protects against experiences of discrimination, supporting efforts to improve access to employment among people with a diagnosis of mental illness.

How much does mental health discrimination cost: valuing experienced discrimination in relation to healthcare care costs and community participation.

AIMS: This study builds on existing research on the prevalence and consequences of mental illness discrimination by investigating and quantifying the relationships between experienced discrimination and costs of healthcare and leisure activities/social participation among secondary mental health service users in England. METHODS: We use data from the Mental Illness-Related Investigations on Discrimination (MIRIAD) study (n = 202) and a subsample of the Viewpoint study (n = 190). We examine experiences of discrimination due to mental illness in the domains of personal relationships, community activities, and health care, and how such experienced discrimination relates to patterns of service use and engagement in leisure activities. RESULTS: Our findings show that the cost of health services used for individuals who reported previous experiences of discrimination in a healthcare setting was almost twice as high as for those who did not report any discrimination during the last 12 months (Relative Risk: 1.73; 95% Confidence Interval (CI): 1.39, 2.17) and this was maintained after controlling for symptoms and functioning. Experienced discrimination in healthcare (Relative Risk: 0.83; 95% CI: 0.81, 0.84) or in relationships (Relative Risk: 0.89; 95% CI: 0.87, 0.91), however, was associated with lower participation in, and hence lower costs of, leisure activities. Individuals who reported any discrimination in a healthcare setting had, on average, £434 higher costs associated with health service use while reported discrimination in the community was associated with increased leisure costs of £32. CONCLUSIONS: These findings make an important initial step towards understanding the magnitude of the costs of mental health-related discrimination.

Viewpoint survey of mental health service users' experiences of discrimination in England 2008-2012.

PURPOSE: Research suggests levels of discrimination among mental health service users in England are high, but fell over the course of the first phase of the Time to Change programme to reduce stigma and discrimination (2008-2011). The aim of this study was to determine changes in discrimination levels, both overall and by the area of life in which discrimination is experienced, since Time to Change began and over the first year of its second phase (2011-2012). METHOD: Separate samples of mental health service users were interviewed annually from 2008 to 2012 using the Discrimination and Stigma Scale. In 2011 and 2012, social capital was also measured using the Resource Generator-UK. RESULTS: Sample percentages of participants reporting the experience of discrimination in one or more life areas for years 2008-2012 were 91.4, 86.5, 86.2, 87.9 and 91.0 %, respectively. A multivariable logistic regression model was performed to test for significant differences by study year, weighted to match the study population and adjusted for employment status and diagnosis as potential confounding factors. The odds of reporting discrimination in one or more life areas were significantly lower as compared to 2008 for all subsequent years except for 2012 (0.76, 95 % CI 0.49-1.19). However, a weighted multiple regression model provided evidence of decreased mean overall discrimination in 2012 as compared to 2008 (mean decrease -7.57, 95 % CI -11.1 to -4.0, p < 0.001). The weighted mean number of social resources was 13.5 in 2012 as compared to 14.0 in 2011 (mean difference -0.60, 95 % CI -1.25 to 0.06). CONCLUSIONS: While the overall level of discrimination across the life areas studied has fallen over 2008-2012, there is no evidence that more people using mental health services experience no discrimination. We suggest that the pattern suggesting a recent rise in discrimination following an earlier reduction may be linked to economic austerity. Further, the welfare benefits system has become an increasing source of discriminatory experience.

Discrimination against people with severe mental illness and their access to social capital: findings from the Viewpoint survey.

Aims. Discrimination against people with severe mental illness is an international problem. It is associated with reduced social contact and hinders recovery. This paper aims to evaluate if experienced or anticipated discrimination is associated with social capital, a known correlate of mental health. Methods. Data from the annual viewpoint cross-sectional survey of people with severe mental illness (n = 1016) were analysed. Exploratory univariate analysis was used to identify correlates of social capital in the sample, which were then evaluated in linear regression models. Additional hypotheses were tested using t tests. Results. Experienced discrimination made a modest contribution to the explained variance of social capital. Experienced discrimination from friends and immediate family was associated with reduced access to social capital from these groups, but this was not found for wider family, neighbours or mental health staff. Experience of discrimination in finding or keeping a job was also associated with reduced access to social capital. Conclusions. Further longitudinal research is needed to determine how resources within people's networks can help to build resilience, which reduces the harmful effect of discrimination on mental health.

Experiences of discrimination among people using mental health services in England 2008-2011.

BACKGROUND: Research suggests that levels of discrimination against people using mental health services are high; however, reports of these people's experiences are rare. AIMS: To determine whether the Time to Change (TTC) programme target of 5% reduction in discrimination has been achieved. METHOD: Separate samples of people using mental health services were interviewed annually from 2008 to 2011 using the Discrimination and Stigma Scale to record instances of discrimination. RESULTS: Ninety-one per cent of participants reported one or more experiences of discrimination in 2008 compared with 88% in 2011 (z = -1.9, P = 0.05). The median negative discrimination score was 40% in 2008 and 28% in 2011 (Kruskal-Wallis χ(2) = 83.4, P<0.001). CONCLUSIONS: The proportion of participants experiencing no discrimination increased significantly over the course of TTC but by less than the initial target. The overall median discrimination score fell by 11.5%. Data from 2010 and 2011 suggest that these gains may be hard to maintain during economic austerity.