The complexities of trans women's access to healthcare in South Africa: moving health systems beyond the gender binary towards gender equity.

BACKGROUND: Public health research highlights the influence of socio-political biases shaping obstacles to fair healthcare access based on gender. South Africa has shown commitment to resolving gender imbalances in healthcare, historically emphasizing cisgender women's challenges. However, research gaps exist in exploring how public health systems perpetuate disparities among gender-diverse persons, like trans women, who face exclusion due to their deviation from cisgender norms in healthcare. Critical, intersectionality-informed health research carries the potential to reveal the diversity of gendered healthcare experiences and expose the systems and processes that marginalize trans patients. METHODS: This study adopts a critical trans politics perspective to explore the socio-political forces limiting South African trans women's access to public healthcare. Using a critical narrative approach, the research asks: 1) What narratives do South African trans women share about their experiences in health systems? 2) What gendered societal structures, practices, and norms enable or hinder their inclusion in health systems? Over a period of two months in 2022, five South African adult trans women between the ages of 22 and 30 participated in 60 to 90-min long, semi-structured individual, telephonic interviews, focusing on participants' subjective experiences in healthcare. RESULTS: Trans women's narratives unveiled a culture of medical genderism in South African public healthcare, discriminating against patients whose gender misaligns with societal norms. This culture is represented by the trans women's experiences of their identities being structurally stigmatized and delegitimized when seeking healthcare, reflected in institutional policies, practices, and protocols consistently disregarding and misgendering them. Trans women's systemic erasure was illustrated by the restricted professional knowledge, availability, and adoption of gender-affirming healthcare in a ciscentric public healthcare system prioritizing cisgender needs. The intersection of gender, race, and class dynamics compounded the obstacles faced in accessing healthcare. CONCLUSIONS: This inquiry underscores the structural hurdles trans women face when accessing suitable public healthcare. It introduces a gender equity framework for trans inclusive healthcare, outlining implications for research, theory, policy, and practice. Toward the goal of embracing complexity and diversity, this framework, for example, promotes the rigorous absorption of trans persons and their healthcare experiences in gender-responsive programming, and encourages the development of a comprehensive understanding of gender equity from an intersectional perspective incorporating the unique needs and rights of trans healthcare seekers. The framework also offers practical guidance for cultivating health systems attuned to gender diversity (such as addressing medical genderism and recognizing the broad spectrum of identity at a policy level).

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.

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.

Evaluating Community Engagement Strategies to Manage Stigma in Two African Genomics Studies Involving People Living with Schizophrenia or Rheumatic Heart Disease.

In global health research and genomics research specifically, community engagement has gained prominence in enhancing ethical conduct, particularly in managing the risk of stigmatization, but there is minimal scientific evidence on how to do this effectively. This article reports on community engagement evaluation strategies in two African genomics studies: the Stigma in African Genomics Research study and the Genomics of Schizophrenia in South African Xhosa People (SAX) study. Within the Stigma in African Genomics Research study, a self-report rating scale and open-ended questions were used to track participant responses to an experiential theatre workshop. The workshop focused on participant experiences of living with schizophrenia or rheumatic heart disease (RHD). While the schizophrenia group reported more alienation and less stigma resistance than the RHD group, both groups demonstrated increased stigma resistance over time, after participating in the workshops. Hearing from others living with and managing the same illness normalised participants' own experiences and encouraged them. Within the SAX study, a short rating scale and qualitative feedback methods were used to evaluate a Mental Health Literacy Day targeting mental health stigma. Information talks about (i) the symptoms of schizophrenia and treatment options and (ii) the illness experiences of a patient in recovery were rated as the most helpful on the day. Audience members reported that these talks challenged negative perceptions about severe mental illness. Three important learnings emerged from these evaluations: firstly, integration of evaluation strategies at the research study planning phase is likely to promote more effective community engagement. Secondly, a combination of quantitative and qualitative methods that draw on simple descriptive statistics and thematic analysis can provide nuanced perspectives about the value of community engagement. Thirdly, such evidence is necessary in establishing and promoting the science of community engagement in genomics research and health research more broadly.

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.

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.

Neuropsychiatric Genetics of African Populations-Psychosis (NeuroGAP-Psychosis): a case-control study protocol and GWAS in Ethiopia, Kenya, South Africa and Uganda.

INTRODUCTION: Schizophrenia and bipolar disorder account for a large proportion of the global burden of disease. Despite their enormous impact, little is known about their pathophysiology. Given the high heritability of schizophrenia and bipolar disorder, unbiased genetic studies offer the opportunity to gain insight into their neurobiology. However, advances in understanding the genetic architecture of schizophrenia and bipolar disorder have been based almost exclusively on subjects of Northern European ancestry. The Neuropsychiatric Genetics of African Populations-Psychosis (NeuroGAP-Psychosis) project aims to expand our understanding of the causes of schizophrenia and bipolar disorder through large-scale sample collection and analyses in understudied African populations. METHODS AND ANALYSIS: NeuroGAP-Psychosis is a case-control study of 34 000 participants recruited across multiple sites within Ethiopia, Kenya, South Africa and Uganda. Participants will include individuals who are at least 18 years old with a clinical diagnosis of schizophrenia or bipolar disorder ('psychosis') or those with no history of psychosis. Research assistants will collect phenotype data and saliva for DNA extraction. Data on mental disorders, history of physical health problems, substance use and history of past traumatic events will be collected from all participants.DNA extraction will take place in-country, with genotyping performed at the Broad Institute. The primary analyses will include identifying major groups of participants with similar ancestry using the computation-efficient programme single nucleotide polymorphisms (SNP) weights. This will be followed by a GWAS within and across ancestry groups. ETHICS AND DISSEMINATION: All participants will be assessed for capacity to consent using the University of California, San Diego Brief Assessment of Capacity to Consent. Those demonstrating capacity to consent will be required to provide informed consent. Ethical clearances to conduct this study have been obtained from all participating sites. Findings from this study will be disseminated in publications and shared with controlled access public databases, such as the database of Genotypes and Phenotypes, dbGaP.

Experiences of gender incongruence and the relationship between social exclusion, psychological distress, and dysfunction among South African transgender adults: A field-study for ICD-11.

BACKGROUND: The classification of sexuality-related conditions and conditions relating to transgender identity has generated controversy. Growing evidence suggests that the distress and dysfunction reported by transgender individuals is more likely associated with social exclusion, stigmatization, and violence than as a result of gender incongruence per se. Our study aimed to explore the experiences of South African transgender individuals through: 1) their self-reported accounts of gender incongruence, and 2) associations between their experiences of social exclusion and violence, and their reports of psychological distress and dysfunction during adolescence. METHODS: Our sample of 57 South African transgender adults completed a structured interview, in English, including questions related to experiences of gender incongruence duration, distress, dysfunction, social exclusion, and violence. RESULTS: Many transgender individuals reported having experienced an intense desire to be a different gender, with all noting discomfort with several aspects of their bodies. Importantly, psychological distress and dysfunction were significantly associated with social exclusion (most commonly perpetuated by family and friends) and not with gender incongruence per se. CONCLUSIONS: This study adds to the growing evidence that experiences of social exclusion play a significant role in the psychological distress and dysfunction reported by transgender persons.

Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study.

BACKGROUND: Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? METHODS: 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. RESULTS: Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant's consent. Participants recruited from the South African Eastern Cape (as opposed to the Western Cape), and older participants (aged between 40 and 59 years), were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness (schizophrenia vs control) nor education (primary vs secondary school) were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. CONCLUSIONS: These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies.

Using iterative learning to improve understanding during the informed consent process in a South African psychiatric genomics study.

Obtaining informed consent is a great challenge in global health research. There is a need for tools that can screen for and improve potential research participants' understanding of the research study at the time of recruitment. Limited empirical research has been conducted in low and middle income countries, evaluating informed consent processes in genomics research. We sought to investigate the quality of informed consent obtained in a South African psychiatric genomics study. A Xhosa language version of the University of California, San Diego Brief Assessment of Capacity to Consent Questionnaire (UBACC) was used to screen for capacity to consent and improve understanding through iterative learning in a sample of 528 Xhosa people with schizophrenia and 528 controls. We address two questions: firstly, whether research participants' understanding of the research study improved through iterative learning; and secondly, what were predictors for better understanding of the research study at the initial screening? During screening 290 (55%) cases and 172 (33%) controls scored below the 14.5 cut-off for acceptable understanding of the research study elements, however after iterative learning only 38 (7%) cases and 13 (2.5%) controls continued to score below this cut-off. Significant variables associated with increased understanding of the consent included the psychiatric nurse recruiter conducting the consent screening, higher participant level of education, and being a control. The UBACC proved an effective tool to improve understanding of research study elements during consent, for both cases and controls. The tool holds utility for complex studies such as those involving genomics, where iterative learning can be used to make significant improvements in understanding of research study elements. The UBACC may be particularly important in groups with severe mental illness and lower education levels. Study recruiters play a significant role in managing the quality of the informed consent process.

The content of delusions in a sample of South African Xhosa people with schizophrenia.

BACKGROUND: Although the relationship between cultural beliefs and schizophrenia has received some attention, relatively little work has emerged from African contexts. In this study we draw from a sample of South African Xhosa people with schizophrenia, exploring their cultural beliefs and explanations of illness. The purpose of the article is to examine the relationship between this cultural context and the content of delusions. METHODS: A sample comprising 200 Xhosa people with schizophrenia participating in a South African schizophrenia genomics study were interviewed using the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I). Participant delusions were thematically analyzed for recurring themes. RESULTS: The majority of participants (n = 125 72.5%) believed that others had bewitched them in order to bring about their mental illness, because they were in some way jealous of the participant. This explanation aligns well with the understanding of jealousy-induced witchcraft in Southern African communities and highlights the important role that culture plays in their content of delusions. CONCLUSIONS: Improved knowledge of these explanatory frameworks highlights the potential value of culturally sensitive assessment tools and stigma interventions in patient recovery. Furthermore such qualitative analyses contribute towards discussion about aspects of delusional thought that may be more universally stable, and those that may be more culturally variable.

A Xhosa language translation of the CORE-OM using South African university student samples.

The translation of well established psychometric tools from English into Xhosa may assist in improving access to psychological services for Xhosa speakers. The aim of this study was to translate the Clinical Outcomes in Routine Evaluation - Outcome Measure (CORE-OM), a measure of general distress and dysfunction developed in the UK, into Xhosa for use at South African university student counselling centres. The CORE-OM and embedded CORE-10 were translated into Xhosa using a five-stage translation design. This design included (a) forward-translation, (b) back-translation, (c) committee approach, (d) qualitative piloting, and (e) quantitative piloting on South African university students. Clinical and general samples were drawn from English-medium South African universities. Clinical samples were generated from university student counselling centres. General student samples were generated through random stratified cluster sampling of full-time university students. Qualitative feedback from the translation process and results from quantitative piloting of the 34-item CORE-OM English and Xhosa versions supported the reduction of the scale to 10 items. This reduced scale is referred to as the South African CORE-10 (SA CORE-10). A measurement and structural model of the SA CORE-10 English version was developed and cross-validated using an English-speaking university student sample. Equivalence of this model with the SA CORE-10 Xhosa version was investigated using a first-language Xhosa-speaking university sample. Partial measurement equivalence was achieved at the metric level. The resultant SA CORE-10 Xhosa and English versions provide core measures of distress and dysfunction. Additional, culture- and language-specific domains could be added to increase sensitivity and specificity.

Sexual disorders in DSM-5 and ICD-11: a conceptual framework.

PURPOSE OF REVIEW: The nature and classification of sexual disorders has been a focus during work on the development of DSM-5 and ICD-11. This article proposes different conceptual approaches to the sexual disorders, including classical, critical and integrative positions. Disorders associated with sexual orientation, gender dysphoria/incongruence and paraphilias/paraphilic disorders are discussed from each of these positions. RECENT FINDINGS: A range of conventional and nonconventional consensual sexual behaviours are prevalent but not necessarily indicative of a mental disorder; there is little diagnostic validity or clinical utility for including these in the nosology. When such behaviours are clinically excessive and associated with distress or impairment, however, a disorder may be present. Debate surrounds the medicalization of some sexual behaviours that are criminal in nature. SUMMARY: The classification of sexual behaviour as disordered is necessarily theory-dependent and value-laden. Nevertheless, reasoned debate about the relevant data and values is possible, and will hopefully further improve the diagnostic validity and clinical utility of psychiatric nosology.

Exploring researchers' experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study.

BACKGROUND: Community engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board (CAB) is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team. DISCUSSION: Four broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement. The CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community's traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants.

Protocols for protection of human participants: a comparison of five countries.

Research ethics protocols relating to human participants were compared across five countries, namely, Australia, Azerbaijan, Iran, the Philippines, and South Africa. These countries were considered to be geographically and culturally diverse, as well as representing both developed and developing countries. The extent to which the research participant is protected across cultures and countries was investigated, with particular focus on the use of informed consent procedures. It was argued that current ethical guidelines and practices fail to ensure the protection of the most vulnerable participants within these cultures. Informed consent mechanisms also often fail to consider cultural differences in self-concept, understanding of research methods, and power differences between researchers and participants. Discussion of these ethical challenges and recommendations for research ethics development within these cultures and countries are discussed.

Patient identification errors are common in a simulated setting.

STUDY OBJECTIVE: We evaluate the frequency and accuracy of health care workers verifying patient identity before performing common tasks. METHODS: The study included prospective, simulated patient scenarios with an eye-tracking device that showed where the health care workers looked. Simulations involved nurses administering an intravenous medication, technicians labeling a blood specimen, and clerks applying an identity band. Participants were asked to perform their assigned task on 3 simulated patients, and the third patient had a different date of birth and medical record number than the identity information on the artifact label specific to the health care workers' task. Health care workers were unaware that the focus of the study was patient identity. RESULTS: Sixty-one emergency health care workers participated--28 nurses, 16 technicians, and 17 emergency service associates--in 183 patient scenarios. Sixty-one percent of health care workers (37/61) caught the identity error (61% nurses, 94% technicians, 29% emergency service associates). Thirty-nine percent of health care workers (24/61) performed their assigned task on the wrong patient (39% nurses, 6% technicians, 71% emergency service associates). Eye-tracking data were available for 73% of the patient scenarios (133/183). Seventy-four percent of health care workers (74/100) failed to match the patient to the identity band (87% nurses, 49% technicians). Twenty-seven percent of health care workers (36/133) failed to match the artifact to the patient or the identity band before performing their task (33% nurses, 9% technicians, 33% emergency service associates). Fifteen percent (5/33) of health care workers who completed the steps to verify patient identity on the patient with the identification error still failed to recognize the error. CONCLUSION: Wide variation exists among health care workers verifying patient identity before performing everyday tasks. Education, process changes, and technology are needed to improve the frequency and accuracy of patient identification.