Lessons learned from the translation of the Internalised Stigma of Mental Illness (ISMI) scale into isiXhosa for use with South African Xhosa people with schizophrenia.

Internalised stigma is highly prevalent among people with mental illness. This is concerning because internalised stigma is often associated with negative consequences affecting individuals' personal, familial, social, and overall wellbeing, employment opportunities and recovery. Currently, there is no psychometrically validated instrument to measure internalised stigma among Xhosa people in their home language. Our study aimed to translate the Internalised Stigma of Mental Illness (ISMI) scale into isiXhosa. Following WHO guidelines, the ISMI scale was translated using a five-stage translation design which included (i) forward-translation, (ii) back-translation, (iii) committee approach, (iv) quantitative piloting, and (v) qualitative piloting using cognitive interviews. The ISMI isiXhosa version (ISMI-X) underwent psychometric testing to establish utility, within-scale validity, convergent, divergent, and content validity (assessed using frequency of endorsements and cognitive interviewing) with n = 65 Xhosa people with schizophrenia. The resultant ISMI-X scale demonstrated good psychometric utility, internal consistency for the overall scale (α = .90) and most subscales (α > .70, except the Stigma Resistance subscale where α = .57), convergent validity between the ISMI Discrimination Experiences subscale and the Discrimination and Stigma (DISC) scale's Treated Unfairly subscale (r = .34, p = .03) and divergent validity between the ISMI Stigma Resistance and DISC Treated Unfairly subscales (r = .13, p = .49). But more importantly the study provides valuable insights into strengths and limitations of the present translation design. Specifically, validation methods such as assessing frequency of endorsements of scale items and using cognitive interviewing to establish conceptual clarity and relevance of items may be useful in small piloting sample sizes.

Invisibility in global health: A case for disturbing bioethical frameworks.

In recent years, the global health community has increasingly reported the problem of 'invisibility': aspects of health and wellbeing, particularly amongst the world's most marginalized and impoverished people, that are systematically overlooked and ignored by people and institutions in relative positions of power. It is unclear how to realistically manage global health invisibility within bioethics and other social science disciplines and move forward. In this letter, we reflect on several case studies of invisibility experienced by people in Brazil, Malaysia, West Africa and other transnational contexts. Highlighting the complex nature of invisibility and its interconnectedness with social, political and economic issues and trends, we argue that while local and targeted interventions might provide relief and comfort locally, they will not be able to solve the underlying causes of invisibility. Building from the shared lessons of case study presentations at an Oxford-Johns Hopkins Global Infectious Disease Ethics Collaborative (GLIDE), we argue that in dealing with an intersectional issue such as invisibility, twenty-first century global health bioethics could pursue a more 'disturbing' framework, challenging the narrow comforting solutions which take as a given the sociomaterial inequalities of the status quo. We highlight that comforting and disturbing bioethical frameworks should not be considered as opposing sides, but as two approaches working in tandem in order to achieve the internationally set global health milestones of providing better health and wellbeing for everyone. Insights from sociology, anthropology, postcolonial studies, history, feminist studies and other styles of critical reasoning have long been disturbing to grand narratives of people and their conditions. To rediscover the ethos of the WHO Alma Ata Declaration-a vision of "health for all by the year 2000"-these thinking tools will be necessary aids in developing cooperation and support beyond the narrow market logic that dominates the landscape of contemporary global health.

Considering equity in global health collaborations: A qualitative study on experiences of equity.

International collaborations have become the standard model for global health research and often include researchers and institutions from high income countries (HICs) and low- and middle-income countries (LMICs). While such collaborations are important for generating new knowledge that will help address global health inequities, there is evidence to suggest that current forms of collaboration may reproduce unequal power relations. Therefore, we conducted a qualitative study with scientists, researchers and those involved in research management, working in international health collaborations. Interviews were conducted between October 2019 and March 2020. We conducted 13 interviews with 15 participants. From our findings, we derive three major themes. First, our results reflect characteristics of equitable, collaborative research relationships. Here we find both relational features, specifically trust and belonging, and structural features, including clear contractual agreements, capacity building, inclusive divisions of labour, and the involvement of local communities. Second, we discuss obstacles to develop equitable collaborations. These include exclusionary labour practices, donor-driven research agendas, overall research culture, lack of accountability and finally, the inadequate financing of indirect costs for LMIC institutions. Third, we discuss the responsibilities for promoting science equity of funders, LMIC researchers, LMIC institutions, and LMIC governments. While other empirical studies have suggested similar features of equity, our findings extend these features to include local communities as collaborators in research projects and not only as beneficiaries. We also suggest the importance of funders paying for indirect costs, without which the capacity of LMIC institutions will continually erode. And finally, our study shows the responsibilities of LMIC actors in developing equitable collaborations, which have largely been absent from the literature.

The role of causal knowledge in stigma considerations in African genomics research: Views of South African Xhosa people.

INTRODUCTION: Advances in genomics research have raised several ethical concerns. One concern is the potential impact of genomics research on stigma experienced by people affected by a disease. Studies have found that the type of illness as well as disease causal beliefs impact on the relation between genetic attribution and stigma. This study explored the potential impact of genetic attribution of disease on stigma among Xhosa people with Rheumatic Heart Disease (RHD). METHODS: Study participants were 46 Xhosa people with RHD living in the Western Cape Province of South Africa. Using video vignettes in 7 focus group discussions we explored whether and how genetic attribution may impact on disease-stigma. Vignettes introduced participants to non-genetic and genetic causal explanations and were followed-up with a series of open-ended questions eliciting their perceptions of non-genetic disease causes as well as genetic causation and its impact on internalised stigma. RESULTS: This study found that Xhosa people with RHD have a general understanding of genetics and genetic attribution for disease. Additionally, and not withstanding their genetic knowledge, these participants hold multiple disease causal beliefs including genetic, infectious disease, psychosocial, behavioural and cultural explanations. While there was evidence of internalised stigma experiences among participants, these appeared not to be related to a genetic attribution to the disease. DISCUSSION: The findings of this study provide clues as to why it is unlikely that a genetic conceptualisation of disease impacts internalised stigma experiences of Xhosa people. The causal explanations provided by participants reflect their cultural understandings and their context, namely, living in low-income and poverty-stricken environments. Divergence in these findings from much of the evidence from high-income countries emphasises that context matters when considering the impact of genetic attribution on stigma and caution against generalising findings from one part of the globe to another.

Mapping experiences and perspectives of equity in international health collaborations: a scoping review.

BACKGROUND: Whilst global health research often involves international collaborations, achieving or promoting equity within collaborations remains a key challenge, despite established conceptual approaches and the development of frameworks and guidelines to promote equity. There have also been several empirical studies documenting researchers' experiences of inequity and views on what is required to advance equity in global health collaborations. While these empirical studies provide critical insights, there has been no attempt to systematically synthetize what constitutes equity and how it can be achieved. To address this gap, we conducted a scoping review of qualitative studies, opinion and editorial pieces about what equity is and how it can be promoted in international collaborations. METHODS: We conducted a scoping review to explore domains of equity in international health collaborations. This review included qualitative studies and opinion pieces or editorial pieces on equity in international health collaborations. We mapped the data and identified common themes using a thematic analysis approach. RESULTS: This initial search retrieved a total of 7611 papers after removing duplicates. A total of 11 papers were included in this review, 10 empirical studies and 1 editorial piece. We conducted our search between October - November 2019. We identified 10 key domains which are important for promoting equity in international collaborations: funding; capacity building; authorship; sample ownership and export; trust; research agreement; acknowledging inequality; recognition and communication. DISCUSSION: Our findings suggest that for international collaborations to be considered more equitable, it must at least consider the 10 domains we highlighted. The 10 domains map onto five key aspects of social justice theory, namely avoiding unequal power relations like subordination, group recognition and affirmation, promoting the well-being of all, inclusion in decision-making and ensuring self-development.

Exploring how a genetic attribution to disease relates to stigma experiences of Xhosa patients with schizophrenia in South Africa.

BACKGROUND: Over the past three decades, a range of international stakeholders have highlighted the possibility that genomic research may impact stigma associated with psychiatric disorders. Limited research has been conducted in Africa to investigate this relation. METHOD: In the present study, using focus group discussions, we explored the relation between genetic attribution and stigma among 36 Xhosa people with schizophrenia. We addressed three main questions: (1) What causal beliefs do Xhosa people with schizophrenia use to explain their illness and to what extent do genetic explanations play a role in these beliefs? (2) What are the internalised stigma experiences of Xhosa people with schizophrenia? (3) How do genetic explanations relate to stigma experiences, if at all? RESULTS: Most participants were able to define genetics and some linked genetics to disease causation. Despite adequate knowledge of genetics and an emphasis on genetic explanations of schizophrenia in the study, most participants held a multitude of causal explanations including: psychosocial, environmental, and cultural. Moreover, participants rarely mentioned disease cause when describing their stigma experiences. DISCUSSION: For this population group, there was no straight-forward relation between a genetic attribution and stigma. Therefore, we did not find evidence that genetic attribution may significantly increase stigma. Although North American and European literature provides conflicting evidence regarding this relation, there is increased consensus that biomedical explanations for psychiatric disorders may reduce blame. This study found evidence supporting that consensus. This study provides an empirical foundation to inform ongoing work on the psychosocial implications of psychiatric genomics research in non-Western contexts.

Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa.

INTRODUCTION: A common concern in African genomic research is that such work may cause, or increase, stigma associated with particular diseases or population groups. While there is some evidence suggesting that genetic attribution of disease might impact stigma, there exists no evidence for the situation in African populations. With increasing genomic research in African populations, questions about the effect of genetic attribution on disease-related stigma are salient for stakeholders involved in implementation and regulation. To understand better the relationship between stigma and genetic attribution, we interviewed people with Rheumatic Heart Disease (RHD) in the Western Cape of South Africa. METHOD: We conducted 11 focus group discussions with RHD patients of mixed-ancestry in the Western Cape, exploring the impact of genetic attribution on stigma. Participants had previously consented to participate in genomic research, attending information sessions on genetics. We explored the impact of genetic attribution by introducing both genetic and environmental causes to RHD and by specifically probing how these various causes would likely impact selected features of disease stigma. RESULTS: Participants reported varying experiences of stigma relating to RHD, such as labelling, social exclusion and discrimination at the workplace. They had some understanding of genetics, either in general, or in relation to their illness. Participants' understanding depicted multiple causal models to explain RHD including genetic, environmental and bacterial causation. Overall, participants did not make a connection between genetics as a cause of RHD and their experiences of stigma. DISCUSSION: In this study we found no support for the concern that genetic attribution of RHD, understood by participants in our study as a genetic predisposition to developing the disease, would impact stigma associated with it. Our findings provide some reassurance that genomic research may be unlikely to cause an increase in disease-related stigma in the South African context.