Measuring discrimination experienced by people with a mental illness: replication of the short-form DISCUS in six world regions.

BACKGROUND: The Discrimination and Stigma Scale (DISC) is a patient-reported outcome measure which assesses experiences of discrimination among persons with a mental illness globally. METHODS: This study evaluated whether the psychometric properties of a short-form version, DISC-Ultra Short (DISCUS) (11-item), could be replicated in a sample of people with a wide range of mental disorders from 21 sites in 15 countries/territories, across six global regions. The frequency of experienced discrimination was reported. Scaling assumptions (confirmatory factor analysis, inter-item and item-total correlations), reliability (internal consistency) and validity (convergent validity, known groups method) were investigated in each region, and by diagnosis group. RESULTS: 1195 people participated. The most frequently reported experiences of discrimination were being shunned or avoided at work (48.7%) and discrimination in making or keeping friends (47.2%). Confirmatory factor analysis supported a unidimensional model across all six regions and five diagnosis groups. Convergent validity was confirmed in the total sample and within all regions [ Internalised Stigma of Mental Illness (ISMI-10): 0.28-0.67, stopping self: 0.54-0.72, stigma consciousness: -0.32-0.57], as was internal consistency reliability (α = 0.74-0.84). Known groups validity was established in the global sample with levels of experienced discrimination significantly higher for those experiencing higher depression [Patient Health Questionnaire (PHQ)-2: p < 0.001], lower mental wellbeing [Warwick-Edinburgh Well-being Scale (WEMWBS): p < 0.001], higher suicidal ideation [Beck Hopelessness Scale (BHS)-4: p < 0.001] and higher risk of suicidal behaviour [Suicidal Ideation Attributes Scale (SIDAS): p < 0.001]. CONCLUSIONS: The DISCUS is a reliable and valid unidimensional measure of experienced discrimination for use in global settings with similar properties to the longer DISC. It offers a brief assessment of experienced discrimination for use in clinical and research settings.

A systematic review and meta-analysis on the prevalence of stigma in infectious diseases, including COVID-19: a call to action.

Infectious diseases, including COVID-19, are crucial public health issues and may lead to considerable fear among the general public and stigmatization of, and discrimination against, specific populations. This meta-analysis aimed to estimate the pooled prevalence of stigma in infectious disease epidemics. We systematically searched PubMed, PsycINFO, Embase, MEDLINE, Web of Science, and Cochrane databases since inception to June 08, 2021, and reported the prevalence of stigma towards people with infectious diseases including SARS, H1N1, MERS, Zika, Ebola, and COVID-19. A total of 50 eligible articles were included that contributed 51 estimates of prevalence in 92722 participants. The overall pooled prevalence of stigma across all populations was 34% [95% CI: 28-40%], including enacted stigma (36% [95% CI: 28-44%]) and perceived stigma (31% [95% CI: 22-40%]). The prevalence of stigma in patients, community population, and health care workers, was 38% [95% CI: 12- 65%], 36% [95% CI: 28-45%], and 30% [95% CI: 20-40%], respectively. The prevalence of stigma in participants from low- and middle-income countries was 37% [95% CI: 29-45%], which is higher than that from high-income countries (27% [95% CI: 18-36%]) though this difference was not statistically significant. A similar trend of prevalence of stigma was also observed in individuals with lower education (47% [95% CI: 23-71%]) compared to higher education level (33% [95% CI: 23-4%]). These findings indicate that stigma is a significant public health concern, and effective and comprehensive interventions are needed to counteract the damaging effects of the infodemics during infectious disease epidemics, including COVID-19, and reduce infectious disease-related stigma.

Does the peer-led Honest, Open, Proud program reduce stigma's impact for everyone? An individual participant data meta-regression analysis.

PURPOSE: Many people with mental illness experience self-stigma and stigma-related stress and struggle with decisions whether to disclose their condition to others. The peer-led Honest, Open, Proud (HOP) group program supports them in their disclosure decisions. In randomized controlled trials, HOP has shown positive effects on self-stigma and stigma stress on average. This study examined individual predictors of HOP outcomes and tested the hypothesis that stigma stress reduction at the end of HOP mediates positive HOP effects at follow-up. METHODS: Six RCTs were included with data at baseline, post (after the HOP program) and at 3- or 4-week follow-up. Baseline variables were entered in meta-regression models to predict change in self-stigma, stigma stress, depressive symptoms and quality of life among HOP participants. Mediation models examined change in stigma stress (post) as a mediator of HOP effects on self-stigma, depressive symptoms, and quality of life at follow-up. RESULTS: More shame at baseline, and for some outcomes reduced empowerment, predicted reduced HOP effects on stigma stress, self-stigma, depressive symptoms, and quality of life. Younger age was related to greater improvements in stigma stress after the HOP program. Stigma stress reductions at the end of HOP mediated positive effects on self-stigma, depressive symptoms and quality of life at follow-up. CONCLUSION: Participants who are initially less burdened by shame may benefit more from HOP. Stigma stress reduction could be a key mechanism of change that mediates effects on more distal outcomes. Implications for the further development of HOP are discussed.

Workplace Mental Health Disclosure, Sustainable Employability and Well-Being at Work: A Cross-Sectional Study Among Military Personnel with Mental Illness.

Purpose Disclosure of mental illness to a supervisor can have positive (e.g. supervisor support) and negative consequences (e.g. stigma). However, research on the association between disclosure and sustainable employability and well-being at work is scarce. The aim of this study was to investigate the association between the disclosure decision (yes/no), experiences with the decision (positive/negative) and sustainable employment and well-being at work among military personnel with mental illness (N = 323). Methods A cross-sectional questionnaire study was conducted. Descriptive and regression (linear and ordinal) analyses were performed. Comparisons were made between those with positive and negative disclosure experiences. Results Disclosure decision (yes/no) was not significantly associated with any of the measures of sustainable employability and well-being at work. However, positive disclosure experiences were significantly associated with higher scores on almost all measures of sustainable employability and well-being at work. Those with negative disclosure experiences reported significantly more shame (Mpos = 2.42, Mneg = 2.78, p < .05) and discrimination (Mpos = 1.70, Mneg = 2.84, p < .001). Those with a positive disclosure experience, reported significantly more supervisor support (Mpos = 3.20, Mneg = 1.94, p < .001). Conclusion We did not find evidence that the disclosure decision itself is related to measures of sustainable employment and well-being at work. In contrast, how participants had experienced their (non-)disclosure decision was significantly related to almost all measures. This emphasizes the importance of the work environments reactions to disclosure and mental illness in the workplace. Future research and interventions should focus on increasing the likelihood of positive disclosure experiences through creating a more inclusive work environment, with more supervisor support and less stigma.

Study protocol of a randomized controlled trial evaluating home treatment with peer support for acute mental health crises (HoPe).

BACKGROUND: Home treatment (HT) is a treatment modality for patients with severe mental illness (SMI) in acute mental crises. It is frequently considered equivalent to psychiatric inpatient treatment in terms of treatment outcome. Peer Support (PS) means that people with lived experience of a mental illness are trained to support others on their way towards recovery. While PS is growing in international importance and despite a growing number of studies supporting its benefits, it is still not comprehensively implemented into routine care. The HoPe (Home Treatment with Peer Support) study investigates a combination of both - HT and PS - to provide further evidence for a recovery-oriented treatment of psychiatric patients. METHODS: In our randomized controlled trial (RCT), HT with PS is compared with HT without PS within a network of eight psychiatric clinical centers from the North, South and East of Germany. We investigate the effects of a combination of both approaches with respect to the prevention of relapse/recurrence defined as first hospitalization after randomization (primary outcome), disease severity, general functioning, self-efficacy, psychosocial health, stigma resistance, recovery support, and service satisfaction (secondary outcomes). A sample of 286 patients will be assessed at baseline after admission to HT care (data point t0) and randomized into the intervention (HT + PS) and control arm (HT). Follow-Up assessments will be conducted 2, 6 and 12 months after admission (resulting in three further data points, t1 to t3) and will be analyzed via intention-to-treat approach. DISCUSSION: This study may determine the positive effects of PS added to HT, prove additional evidence for the efficacy of PS and thereby facilitate its further implementation into psychiatric settings. The aim is to improve quality of mental health care and patients' recovery as well as to reduce the risk of relapses and hospitalizations for patients with SMI. TRIAL REGISTRATION: The trial is registered with ClinicalTrials.gov: NCT04336527 , April 7, 2020.

Attitudes towards disclosing a mental illness: impact on quality of life and recovery.

PURPOSE: The decision whether to disclose a mental illness has individual and social consequences. Secrecy may protect from stigma and discrimination while disclosure can increase social support and facilitate help-seeking. Therefore, disclosure decisions are a key reaction to stigma. The first aim of this study was to test a newly developed scale to measure disclosure attitudes, the Attitudes to Disclosure Questionnaire (AtDQ). The second aim was to examine the impact of attitudes towards disclosing a mental illness on quality of life and recovery. METHODS: Among 100 participants with mental illness, disclosure attitudes, quality of life, recovery, benefits of disclosure, secrecy, social withdrawal, self-stigma, and depressive symptoms were assessed at weeks 0, 3 and 6. Psychometric properties of the AtDQ were analysed. Longitudinal associations between disclosure attitudes at baseline and quality of life and recovery after 6 weeks were examined in linear regressions. RESULTS: The analyses of the AtDQ indicated one-factor solutions, high acceptability, high internal consistency, and good retest reliability for the total scale and the subscales as well as high construct validity of the total scale. Results provided initial support for sensitivity to change. More positive disclosure attitudes in general and in particular regarding to family at baseline predicted better quality of life and recovery after 6 weeks. CONCLUSION: The current study provides initial support for the AtDQ as a useful measure of disclosure attitudes. Disclosing a mental illness, especially with respect to family, may improve quality of life and recovery of people with mental illness.

Honest, Open, Proud to support disclosure decisions and to decrease stigma's impact among people with mental illness: conceptual review and meta-analysis of program efficacy.

PURPOSE: Honest, Open, Proud (HOP; formerly "Coming Out Proud"/COP) is a peer-led group program to support people with mental illness in their disclosure decisions and in their coping with stigma. The aims of this study were to provide (i) a conceptual review of HOP, including versions for different target groups and issues related to outcome measurement and implementation; and (ii) a meta-analysis of program efficacy. METHODS: Conceptual and empirical literature on disclosure and the HOP program was reviewed. Controlled trials of HOP/COP were searched in literature databases. A meta-analysis of HOP efficacy in terms of key outcomes was conducted. RESULTS: HOP program adaptations for different target groups (e.g. parents of children with mental illness; veterans or active soldiers with mental illness) exist and await evaluation. Recruitment for trials and program implementation may be challenging. A meta-analysis of five HOP RCTs for adults or adolescents with mental illness or adult survivors of suicide attempts found significant positive effects on stigma stress (smd = - 0.50) as well as smaller, statistically non-significant effects on self-stigma (smd = - 0.17) and depression (smd = - 0.11) at the end of the HOP program. At 3- to 4-week follow-up, there was a modest, not statistically significant effect on stigma stress (smd = - 0.40, 95%-CI -0.83 to 0.04), while effects for self-stigma were small and significant (smd = - 0.24). Long-term effects of the HOP program are unknown. CONCLUSION: There is initial evidence that HOP effectively supports people with mental illness in their disclosure decisions and in their coping with stigma. Implementation issues, future developments and public health implications are discussed.

Supporting mental health disclosure decisions: the Honest, Open, Proud programme.

The stigma associated with mental health problems leaves many feeling they have to 'hide' their difficulties. Supporting them in making disclosure decisions can potentially improve well-being, reduce self-stigma and support recovery processes. In this editorial we discuss the case for interventions designed for this purpose and present one prominent programme: Honest, Open, Proud.

'Placement budgets' for supported employment: impact on employment rates in a multicentre randomised controlled trial.

BACKGROUND: The most effective rehabilitation model for job (re-)entry of people with mental illness is supported employment. A barrier to introducing supported employment into standard care is its temporally unlimited provision, which conflicts with health and social legislation in many European countries. AIMS: To test the impact of different 'placement budgets', i.e. a predefined maximum time budget for job seeking until take-up of competitive employment. METHOD: Participants (116) were randomly assigned to 25 h, 40 h or 55 h placement budgets in an intent-to-treat analysis. We applied the individual placement and support model over 24 months, following participants for 36 months. Primary outcome was employment in the labour market for at least 3 months. RESULTS: The proportion of participants obtaining competitive employment was 55.1% in the 25 h group, 37.8% in the 40 h group and 35.8% in the 55 h group. In a Cox regression analysis, time to employment was slightly lower in the 25 h group relative to the 40 h (hazard ratio 1.78, 95% CI 0.88-3.57, P = 0.107) and 55 h groups (hazard ratio 1.74, 95% CI 0.86-3.49, P = 0.122), but this was not statistically significant. The vast majority of all participants who found a job did so within the first 12 months (80.4%). CONCLUSION: A restricted time budget for job finding and placement does not affect the rate of successful employment. In accordance with legislation, a restriction of care provision seems justified and enhances the chances of supported employment being introduced in statutory services.

Childhood bullying victimization, self-labelling, and help-seeking for mental health problems.

PURPOSE: Previous research found sustained high levels of mental health service use among adults who experienced bullying victimization during childhood. This could be due to increased psychopathology among this group, but other factors, such as self-perception as having a mental health problem, might contribute to increased service use. Additionally, the relationship between informal help-seeking for mental health problems and bullying victimization is incompletely understood. METHODS: The present study examined associations between the frequency of bullying victimization and both formal service use and informal help-seeking for mental health problems independent from psychopathology. Data on bullying victimization, service use, informal help-seeking for mental health problems, psychopathology, and self-labelling as a person with mental illness were collected among 422 young people aged 13-22 years. RESULTS: In logistic regression models, controlling for past and current psychopathology and using no bullying victimization as the reference category, we identified a greater likelihood of mental health service use among persons who experienced frequent bullying victimization, as well as a greater likelihood of seeking informal help among persons who experienced occasional victimization. Increased self-identification as a person with mental illness completely mediated the positive association between frequent bullying victimization and mental health service use. CONCLUSIONS: Our findings suggest that services to support persons who experienced frequent bullying victimization should focus on improving empowerment and self-perception. Additionally, there might be unserved need for formal support among those who experienced occasional bullying victimization.

Mental health literacy and help-seeking among unemployed people with mental health problems.

Background: Unemployed people with mental health problems often do not use available mental health services. Help-seeking may depend on knowledge, recognition and attitudes associated with mental health - a concept referred to as mental health literacy (MHL).Aim: To investigate the influence of MHL on help-seeking intentions and behaviors among unemployed individuals with mental health problems.Methods: A total of 301 unemployed individuals with mental health problems were recruited mainly from employment agencies in Southern Germany. MHL was assessed by the Mental Health Knowledge Schedule (MAKS), the Depression Literacy Scale (DLS), and the Depression with Suicidal Thoughts Vignette. Help-seeking intentions and behaviors were measured using the General Help-Seeking Questionnaire (GHSQ). Associations between MHL and help-seeking intentions and behaviors were tested using regression analyses and structural equation modeling (SEM).Results: All three MHL scales were significantly positively associated with help-seeking intentions and behaviors. In our SEM model, greater MHL was significantly associated with increased intentions and behaviors to seek help from health professionals (formal help) and from family and friends (informal help).Conclusions: Among unemployed persons with mental health problems, programs to improve MHL could facilitate formal as well as informal help-seeking. Future research should examine the efficacy of MHL-interventions to increase help-seeking.

Self-Contempt as a Predictor of Suicidality: A Longitudinal Study.

People with mental illness can internalize public prejudice and negative emotional reactions to their group, leading to self-contempt. This study examined self-contempt related to having a mental illness as predictor of suicidality among 77 people with mental illness in Southern Germany. Self-contempt, depressive symptoms, hopelessness, and suicidality were assessed at baseline; suicidality was measured again 3 months later. High self-contempt at baseline predicted increased suicidality at follow-up, adjusting for baseline suicidality, symptoms, diagnosis, age, sex, and hopelessness. These results suggest that self-contempt may be a risk factor for suicidality and call for specific interventions targeting self-stigma and its emotional consequences.

Disclosure and Quality of Life Among Unemployed Individuals With Mental Health Problems: A Longitudinal Study.

Unemployment and mental disorders are associated with impaired quality of life. Because of the stigma associated with mental illness, unemployed individuals with mental health problems face the difficult decision whether to disclose their condition to others. Disclosure has both risks and benefits, and it is unclear how it affects quality of life. We therefore examined disclosure attitudes at baseline as predictors of quality of life after 6 months and also assessed social support, depressive symptoms, self-stigma, and perceived discrimination among 301 unemployed individuals with mental health problems. Better quality of life at follow-up was predicted by better attitudes toward disclosure among family and friends, shorter length of unemployment, less symptoms, and, at a trend level, less self-stigma at baseline. Thus disclosure in one's private environment may improve quality of life among unemployed individuals with mental health problems.

Stigma and suicidality among suicide attempt survivors: A qualitative study.

Among people with mental illness, stigma experiences can increase suicidality, and suicidality itself is associated with negative stereotypes. Suicide attempt survivors experience both mental illness stigma and suicide stigma, which could contribute to their increased risk for completed suicide. We interviewed 13 suicide attempt survivors regarding experiences and consequences of stigma and identified five stigma-related themes. Stigma led to substantial emotional strain, including loneliness and hopelessness, which are important precursors of suicidality. Our findings suggest that both mental illness stigma and suicide stigma can contribute to suicidality among people with mental illness in general, and in suicide attempt survivors specifically.

Secrecy versus disclosure of mental illness among adolescents: II. The perspective of relevant stakeholders.

BACKGROUND: The burden of mental illness (MI) is exacerbated when adolescents with MI are confronted with stigma and social exclusion. Adolescents face the difficult decision whether or not to disclose their MI. Focus groups (FGs) were conducted with parents of adolescents with MI as well as with teachers, mental health professionals (MHPs) and adolescents without MI. AIM: To collect information from relevant stakeholders on secrecy versus disclosure of MI among adolescents. METHODS: Thirteen FG sessions with 87 participants were recorded, transcribed and analyzed using qualitative content analysis to identify major themes. RESULTS: Selective disclosure and social media as a potential way of disclosure emerged as dominant themes. Negative aspects of disclosure on social media were discussed. Stigma and labeling were seen as disadvantages of disclosure. Social support was perceived as one advantage of disclosure. Distinctive features of adolescence, such as self-discovery, appeared as specific problems. Parents, teachers, MHPs and adolescents without MI were considered important for disclosure. Participants discussed how to help adolescents with their dilemma between disclosure and secrecy. CONCLUSIONS: The findings suggest that disclosure decisions are personal and influenced by the individual's environment. Implications for interventions that aim to support adolescents with MI in this regard are discussed.

Secrecy versus disclosure of mental illness among adolescents: I. The perspective of adolescents with mental illness.

BACKGROUND: Many adolescents with mental illness (MI) struggle with the decision whether to disclose their condition. They may decide to keep their MI secret, whether due to fear of public stigma or due to self-stigma and shame. Secrecy may protect against discrimination, but has often negative long-term consequences such as social isolation. AIM: To explore personal views of adolescents with MI on secrecy and disclosure of their MI. METHOD: Six focus groups consisting of 39 adolescents with MI were recorded, transcribed, and analyzed by qualitative content analysis to identify major themes deductively and inductively. RESULTS: Participants described MI as a stigmatized condition and stressed both the benefits and risks of secrecy. Disadvantages included fear of stigma and loss of friendships, benefits included emotional support and relief. Adolescents underlined the importance of individual disclosure decisions (DDs). The majority preferred selective disclosure. Additionally, the role of other adolescents with and without MI was emphasized. CONCLUSIONS: DDs are individual and depend on social factors since stigma and fear of discrimination remain significant concerns for adolescents with MI. Implications for future interventions to support adolescents with MI are discussed.

Effectiveness of interventions to promote help-seeking for mental health problems: systematic review and meta-analysis.

Help-seeking is important to access appropriate care and improve mental health. However, individuals often delay or avoid seeking help for mental health problems. Interventions to improve help-seeking have been developed, but their effectiveness is unclear. A systematic review and meta-analysis were therefore conducted to examine the effectiveness of mental health related help-seeking interventions. Nine databases in English, German and Chinese were searched for randomised and non-randomised controlled trials. Effect sizes were calculated for attitudes, intentions and behaviours to seek formal, informal and self-help. Ninety-eight studies with 69 208 participants were included. Interventions yielded significant short-term benefits in terms of formal help-seeking, self-help, as well as mental health literacy and personal stigma. There were also positive long-term effects on formal help-seeking behaviours. The most common intervention types were strategies to increase mental health literacy, destigmatisation (both had positive short-term effects on formal help-seeking behaviours) as well as motivational enhancement (with positive long-term effects on formal help-seeking behaviours). Interventions improved formal help-seeking behaviours if delivered to people with or at risk of mental health problems, but not among children, adolescents or the general public. There was no evidence that interventions increased the use of informal help. Few studies were conducted in low- and middle-income countries (LMICs). This study provides evidence for the effectiveness of help-seeking interventions in terms of improving attitudes, intentions and behaviours to seek formal help for mental health problems among adults. Future research should develop effective interventions to improve informal help-seeking, for specific target groups and in LMICs settings.

Honest, Open, Proud for adolescents with mental illness: pilot randomized controlled trial.

BACKGROUND: Due to public stigma or self-stigma and shame, many adolescents with mental illness (MI) struggle with the decision whether to disclose their MI to others. Both disclosure and nondisclosure are associated with risks and benefits. Honest, Open, Proud (HOP) is a peer-led group program that supports participants with disclosure decisions in order to reduce stigma's impact. Previously, HOP had only been evaluated among adults with MI. METHODS: This two-arm pilot randomized controlled trial included 98 adolescents with MI. Participants were randomly assigned to HOP and treatment as usual (TAU) or to TAU alone. Outcomes were assessed pre (T0/baseline), post (T1/after the HOP program), and at 3-week follow-up (T2/6 weeks after T0). Primary endpoints were stigma stress at T1 and quality of life at T2. Secondary outcomes included self-stigma, disclosure-related distress, empowerment, help-seeking intentions, recovery, and depressive symptoms. The trial is registered on ClinicalTrials (NCT02751229; http://www.clinicaltrials.gov). RESULTS: Compared to TAU, adolescents in the HOP program showed significantly reduced stigma stress at T1 (d = .92, p < .001) and increased quality of life at T2 (d = .60, p = .004). In a longitudinal mediation model, the latter effect was fully mediated by stigma stress reduction at T1. HOP further showed significant positive effects on self-stigma, disclosure-related distress, secrecy, help-seeking intentions, attitudes to disclosure, recovery, and depressive symptoms. Effects at T1 remained stable or improved further at follow-up. In a limited economic evaluation HOP was cost-efficient in relation to gains in quality of life. CONCLUSIONS: As HOP is a compact three-session program and showed positive effects on stigma and disclosure variables as well as on symptoms and quality of life, it could help to reduce stigma's negative impact among adolescents with MI.

Self-stigma as a barrier to recovery: a longitudinal study.

Stigma limits life opportunities of persons with mental illness. Self-stigma, the internalization of negative stereotypes, undermines empowerment and could hinder recovery. Here we examined self-stigma's effect on recovery among 222 disability pensioners with mental illness over 2 years, controlling for age, gender, symptoms and recovery at baseline measured by the Recovery Assessment Scale. More self-stigma at baseline was associated with a significant decrease in recovery after 1 year (not significant after 2 years). An increase of self-stigma from baseline to follow-up predicted less recovery 1 and 2 years later. Interventions that reduce self-stigma could therefore improve recovery.