Anticipated and experienced stigma and discrimination in the workplace among individuals with major depressive disorder in 35 countries: qualitative framework analysis of a mixed-method cross-sectional study.

OBJECTIVES: Workplace stigmatisation and discrimination are significant barriers to accessing employment opportunities, reintegration and promotion in the workforce for people with mental illnesses in comparison to other disabilities. This paper presents qualitative evidence of anticipated and experienced workplace stigma and discrimination among individuals with major depressive disorder (MDD) in 35 countries, and how these experiences differ across countries based on their Human Development Index (HDI) level. DESIGN: Mixed-method cross-sectional survey. PARTICIPANTS, SETTING AND MEASURES: The qualitative data were gathered as part of the combined European Union Anti-Stigma Programme European Network and global International Study of Discrimination and Stigma Outcomes for Depression studies examining stigma and discrimination among individuals with MDD across 35 countries. Anticipated and experienced stigma and discrimination were assessed using the Discrimination and Stigma Scale version 12 (DISC-12). This study used responses to the open-ended DISC-12 questions related to employment. Data were analysed using the framework analysis method. RESULTS: The framework analysis of qualitative data of 141 participants identified 6 key 'frames' exploring (1) participants reported experiences of workplace stigma and discrimination; (2) impact of experienced workplace stigma and discrimination; (3) anticipated workplace stigma and discrimination; (4) ways of coping; (5) positive work experiences and (6) contextualisation of workplace stigma and discrimination. In general, participants from very high HDI countries reported higher levels of anticipated and experienced discrimination than other HDI groups (eg, less understanding and support, being more avoided/shunned, stopping themselves from looking for work because of expectation and fear of discrimination). Furthermore, participants from medium/low HDI countries were more likely to report positive workplace experiences. CONCLUSIONS: This study makes a significant contribution towards workplace stigma and discrimination among individuals with MDD, still an under-researched mental health diagnosis. These findings illuminate important relationships that may exist between countries/contexts and stigma and discrimination, identifying that individuals from very high HDI countries were more likely to report anticipated and experienced workplace discrimination.

Developing and establishing the psychometric properties of the Strathclyde Citizenship Measure: A new measure for health and social care practice and research.

There has been increasing interest and research attention towards citizenship-based practices and care within health and social care settings. A framework for implementing citizenship-based interventions has helped support the participation in society of persons who have experienced major life disruptions. Yet, having ways to measure the impact of citizenship 'in action' within specific socio-cultural contexts has proved challenging. We report on the development of the Strathclyde Citizenship Measure (SCM) which seeks to establish a psychometrically sound measure of citizenship that is relevant to the Scottish context. We outline the three phases of developing the SCM: (1) item generation, (2) item reduction and piloting, and (3) measure validation. Having generated items for the SCM using concept mapping techniques, we piloted it with 407 participants who completed an online survey of a 60-item version of the SCM. The aims were to assess the validity of the items and reduce the number of items using principal components analysis for the final measure. This resulted in a 39 item SCM. We then sought to establish the psychometric properties of this shorter version of the SCM through testing its reliability, convergent, concurrent and discriminant validity. The 39 item SCM was administered online to 280 Scottish residents along with additional measures including the Warwick-Edinburgh Mental Well-being Scale (WEMWBS), the Depression, Anxiety and Stress Scale (DASS21), the Sense of Belonging Instrument (SOBI-A); the Big Five Personality Inventory (Shortened Version; BFI-10) and the Personal Social Capital Scale (PSCS-16). The factor structure and dimensionality of the SCM was examined using exploratory factor analysis and it was found to be reliable and valid. This paper explores the potential for the application of the SCM across health and social care settings and identifies future work to develop citizenship tools to facilitate dialogues about citizenship across health and social care practice settings.

Citizens defining citizenship: A model grounded in lived experience and its implications for research, policy and practice.

Citizenship is gaining currency in health and social care internationally as a way of making sense of the lived experiences of people with major life disruptions who face exclusion, marginalisation and discrimination, but the concept is often contested, poorly defined and understood. This paper charts the development of an empirical model of citizenship within Scotland, UK. A mixed-method, community-based participatory research approach using 10 focus groups (n = 77), concept-mapping exercises (n = 45) and statement clarity and relevant ratings (n = 242) was used to develop a model of citizenship that is grounded in the lived experience of participants, which is absent from current conceptualisations of citizenship. Multidimensional scaling and hierarchical cluster analysis revealed five core domains emerging from our work: 'building relationships', 'autonomy and acceptance', 'access to services and supports', 'shared values and social roles' and 'civic rights and responsibilities' representing the personal meanings of citizenship for participants. We argue that the value of this model is that it is draws upon the personal understandings and experiences of participants who emphasised the 'banal ordinariness' of its core elements. We suggest that the model makes an original contribution by clearly illustrating the practical applicability of citizenship as a concept; thus, enhancing existing theories of citizenship. Our model highlights the interplay between the relational and structural aspects of citizenship and acknowledges the barriers that marginalised groups face in claiming their citizenship rights. It offers a call to action for policy makers and practitioners to set goals that contribute to the social inclusion of those who have experienced major life disruptions.

"The biggest barrier is to inclusion itself": the experience of citizenship for adults with mental health problems.

BACKGROUND: Citizenship has been promoted within mental health for several decades however, its application in the field of mental health policy and practice is relatively novel. The voices of people who experience mental health problems (MHPs) are often absent in ongoing discourses about citizenship. AIMS: To explore how adults with experience of MHPs and other life disruptions identify potential barriers to citizenship. METHOD: A community based participatory research approach was adopted with peer researchers. Six focus groups (N = 40) using semi-structured interviews were conducted, consisting of participants who had experience of MHPs and other life disruption(s) within the last 5 years. The focus groups were audio recorded, transcribed verbatim and analysed in NVIVO using a thematic approach. RESULTS: Three major themes associated with participants lived experiences of barriers to citizenship were identified: 'stigmatisation (internal & external) creates further divide'; 'being socially excluded leads to isolation'; and 'a sense of difference (as perceived by the self and others)'. CONCLUSIONS: Those who have experienced major life disruption(s) face multi-level barriers to citizenship. An awareness of such barriers has important implications for mental health research, policy and practice. Citizenship-oriented implementation strategies that aim to address multi-level barriers merit further investigation.

Cross-national variations in reported discrimination among people treated for major depression worldwide: the ASPEN/INDIGO international study.

BACKGROUND: No study has so far explored differences in discrimination reported by people with major depressive disorder (MDD) across countries and cultures. AIMS: To (a) compare reported discrimination across different countries, and (b) explore the relative weight of individual and contextual factors in explaining levels of reported discrimination in people with MDD. METHOD: Cross-sectional multisite international survey (34 countries worldwide) of 1082 people with MDD. Experienced and anticipated discrimination were assessed by the Discrimination and Stigma Scale (DISC). Countries were classified according to their rating on the Human Development Index (HDI). Multilevel negative binomial and Poisson models were used. RESULTS: People living in 'very high HDI' countries reported higher discrimination than those in 'medium/low HDI' countries. Variation in reported discrimination across countries was only partially explained by individual-level variables. The contribution of country-level variables was significant for anticipated discrimination only. CONCLUSIONS: Contextual factors play an important role in anticipated discrimination. Country-specific interventions should be implemented to prevent discrimination towards people with MDD.

Nature and impact of European anti-stigma depression programmes.

Stigma associated with depression is a major public health issue in the EU, with over 20 million people experiencing depression and its associated personal distress each year. While most programmes against stigma related to mental health problems are of a general nature, the knowledge about programmes tackling stigma against people with depression is limited. This study therefore aims to assess the nature and impact of depression-specific programmes in EU countries. Using a web-based tool, 26 programmes were identified across the 18 EU countries taking part in the study. Most were universal and targeted the whole population, while many also targeted specific population groups or settings, such as young people or health professionals. The most common programme aim was improving literacy, although reducing stigmatizing attitudes and discriminatory behaviour and promoting help-seeking were also common. Most programmes originated from professional bodies, or as grassroots initiatives from service user groups/NGOs, rather than as part of national and local policy. The approaches used were primarily different forms of education/information, with some, but very limited, use of positive personal contact. Overall, the quality and extent of impact of the programmes was limited, with few leading to peer-reviewed publications. Specific programmes were identified with evidence of positive impact, and we drew on these examples to develop a framework to be used for future programmes against stigma and discrimination associated with depression. These findings are provided in full in the Anti-Stigma Partnership European Network Toolkit available at www.antistigma.eu.

Beliefs, stigma and discrimination associated with mental health problems in Uganda: implications for theory and practice.

BACKGROUND: There are major gaps in knowledge about beliefs, stigma and discrimination in Uganda, including the relationship between different cultural beliefs and stigmatising responses, how stigma and beliefs result in discrimination and the impact of social factors such as gender, poverty and ethnic conflict. AIM: This exploratory study aims to understand beliefs, stigma and discrimination associated with mental health in Uganda in more depth from the perspectives of different stakeholders. METHODS: Focus groups and interviews were undertaken with mental health activists, policymakers, practitioners, non-governmental and human rights organisations, journalists and academics. RESULTS: Stigma was reported by individuals, families, communities and institutions, including health services. The study also found stigmatising beliefs linked to traditional, religious and medical explanatory frameworks, high levels of 'associated stigma', common mental health problems rarely medicalised and discrimination linked to poverty, gender and conflict. CONCLUSIONS: The findings suggest the need to address stigma in their cultural and social context, alongside other human rights initiatives.

Community conversation: addressing mental health stigma with ethnic minority communities.

INTRODUCTION: Stigma associated with mental health problems is a significant public health issue. Patterns of stigma and discrimination vary between and within communities and are related to conceptualisations of, and beliefs about, mental health. Population approaches to addressing stigma rarely consider diverse cultural understandings of mental health. METHODS: 257 members of the major black and minority ethnic communities in Scotland participated in 26 mental health awareness workshops that were designed and delivered by community organisations. Questionnaires measuring knowledge, attitudes and behavioural intent were completed before and after the intervention. RESULTS: Community led approaches that acknowledge cultural constructs of mental health were received positively by community groups. The study found significant reported stigma in relation to public protection, marriage, shame and contribution, but also high levels of recovery optimism. The workshops resulted in significant positive change in relation to knowledge, attitudes and behavioural intent amongst participants, with most aspects of stigma showing significant improvement, with the exception of dangerousness. DISCUSSION: The paper argues community approaches to tackling stigma are more valuable than top-down public education and could form the basis of national initiatives. Refinements to the evaluation framework are considered.

Beliefs and community responses to mental illness in Ghana: the experiences of family carers.

BACKGROUND: There is often a lack of agreement on how to understand mental illness in low-income countries and support those experiencing it. This article explores the debate on beliefs and the implications for how society responds. MATERIAL: Semi-structured interviews were undertaken with 80 family carers across four sites in Ghana to explore the themes of beliefs, attitudes, carer burden and support. DISCUSSION AND CONCLUSIONS: There appears to be greater reliance on culturally specific explanations of mental illness in rural areas, combined with more acceptance and support, particularly in one rural area with strong traditional belief systems. This suggests the need to develop integrated mental health services, which reflect these differing beliefs.