HIV and gender identity expression among transfeminine people in the Western Cape, South Africa - a thematic analysis of data from the HPTN 071 (PopART) trial.

INTRODUCTION: Transfeminine people in South Africa have a high HIV risk due to structural, behavioural, and psychosocial factors. Transfeminine people and feminine identifying men who have sex with men (MSM) are often conflated or grouped with transgender or MSM categories in HIV service programming, although they don't necessarily identify as either. We aimed to investigate gender expression among feminine identifying people who were assigned male at birth. We examined how local conceptualizations of sexuality and gender intersect with the key population label of 'transgender' imported into local HIV programming. METHODS: A qualitative cohort nested within the HPTN 071 (PopART) trial included longitudinal, in-depth interviews with eight transfeminine people (four who disclosed as living with HIV). Data were collected approximately every six weeks between January 2016 and October 2017. We used a combination of thematic analysis and case study descriptions to explore gender identification among participants. RESULTS: Of the eight participants, only one accepted 'transgender' as a label, and even she used varying terms at different times to describe her identity. For participants, a feminine identity included dressing in normatively feminine clothes; using feminine terms, pronouns and names; and adopting stereotypically feminine mannerisms. Participants would switch between typically feminine and masculine norms in response to contextual cues and audience. For example, some participants accepted identification as masculine gay men amongst their family members. Among peers, they expressed their identity through typically more effeminate gender characteristics, for example self-identifying as "femgay". With partners they often also took on a feminine identity role, for example identifying as women in sexual and romantic relationships (meaning they viewed and expressed themselves as the feminine partner in the relationship). CONCLUSIONS: Our findings are amongst the first exploratory and descriptive data of transfeminine people in South Africa. We show how transfeminine people navigate fluid gender identities that could pose a challenge for accessing and utilizing HIV services that are currently set up for transgender individuals or MSM. More work needs to be done to understand and respond to the diverse and shifting ways people experience their gender identities in this high HIV burden context.

Uncovering multi-level mental healthcare barriers for migrants: a qualitative analysis across China, Germany, Netherlands, Romania, and South Africa.

BACKGROUND: Forced displacement is a significant issue globally, and it affected 112 million people in 2022. Many of these people have found refuge in low- and middle-income countries. Migrants and refugees face complex and specialized health challenges, particularly in the area of mental health. This study aims to provide an in-depth qualitative assessment of the multi-level barriers that migrants face in accessing mental health services in Germany, Macao (Special Administrative Region of China), the Netherlands, Romania, and South Africa. The ultimate objective is to inform tailored health policy and management practices for this vulnerable population. METHODS: Adhering to a qualitative research paradigm, the study centers on stakeholders' perspectives spanning microsystems, mesosystems, and macrosystems of healthcare. Utilizing a purposive sampling methodology, key informants from the aforementioned geographical locations were engaged in semi-structured interviews. Data underwent thematic content analysis guided by a deductive-inductive approach. RESULTS: The study unveiled three pivotal thematic barriers: language and communication obstacles, cultural impediments, and systemic constraints. The unavailability of professional interpreters universally exacerbated language barriers across all countries. Cultural barriers, stigmatization, and discrimination, specifically within the mental health sector, were found to limit access to healthcare further. Systemic barriers encompassed bureaucratic intricacies and a conspicuous lack of resources, including a failure to recognize the urgency of mental healthcare needs for migrants. CONCLUSIONS: This research elucidates the multifaceted, systemic challenges hindering equitable mental healthcare provision for migrants. It posits that sweeping policy reforms are imperative, advocating for the implementation of strategies, such as increasing the availability of language services, enhancing healthcare providers' capacity, and legal framework and policy change to be more inclusive. The findings substantially contribute to scholarly discourse by providing an interdisciplinary and international lens on the barriers to mental healthcare access for displaced populations.

Evaluating workforce needs: an investigation of healthcare professionals' attitudes, beliefs and preparedness towards the management of Para athlete mental health at the Tokyo 2020 and Beijing 2022 Paralympic Games.

OBJECTIVES: To examine healthcare professionals (HCPs) attitudes, beliefs and preparedness towards the management of Para athlete mental health during the Tokyo 2020 and Beijing 2022 Paralympic Games. METHODS: A cross-sectional observational study was conducted. National Paralympic Committee's HCPs (n=857) working at the Tokyo 2020 and Beijing 2022 Paralympic Games were invited to respond to an anonymous online survey regarding the management of Para athlete mental health in their team. Data were analysed using descriptive frequency statistics. RESULTS: The survey was completed by 256 HCPs (30% of respondents). Most HCPs agreed that mental health was a concern in Para athletes (n=210; 82%). However, half (n=122; 48%) agreed that they did not screen Para athletes for mental health symptoms, and half (n=130; 51%) agreed that there was increased stigma around disclosure of mental health symptoms among Para athletes, compared with athletes without disability. Most HCPs (n=221; 86%) agreed they wanted to improve their knowledge and skills surrounding athlete mental healthcare. Culturally sensitivite, non-discriminatory and contextual factors were highlighted as desired areas of education for HCPs and active information dissemination for Para athletes. CONCLUSION: HCPs working at the Paralympic Games considered Para athlete mental healthcare important and reported perceived stigma, yet indicated low rates of mental health screening. Most respondents expressed the need for mental health education. Culturally sensitive training and active education strategies should be implemented to optimally manage Para athlete mental health.

Evaluating workforce well-being: an investigation of healthcare professionals' mental health and burnout symptoms at the Tokyo 2020 and Beijing 2022 Paralympic Games.

OBJECTIVE: To explore the prevalence of symptoms of mental health conditions and burnout of healthcare professionals (HCPs) working during the Tokyo 2020 Paralympic Games and the Beijing 2022 Paralympic Winter Games. METHODS: In this cross-sectional, observational study, HCPs working during the Tokyo 2020 and Beijing 2022 Paralympic Games were asked to complete an online, anonymous survey, which included demographic questions and questions regarding mental health symptoms including depression (Patient Health Questionnaire 9-item depression scale) and anxiety (Generalized Anxiety Disorder 7-item scale) as well as burnout (Maslach Burnout Inventory-Human Services Survey: depersonalisation, emotional exhaustion, personal accomplishment). Correlation coefficients (r) were calculated between demographic characteristics and mental health symptoms. RESULTS: In total, 256 HCPs (of 857 HCPs; 30%) completed the surveys. Twelve and eight per cent of HCP scores fell within the moderate to severe depression and moderate to severe anxiety categories, respectively. More than 30% reported moderate to high burnout (depersonalisation: 36%; emotional exhaustion: 36%; personal accomplishment: 58%). In addition, thoughts of self-harm and/or suicidality were reported by some HCPs (8%). Weak correlations were observed between age and depression (r=-0.13, p=0.046), anxiety (r=-0.16, p=0.010) and burnout (emotional exhaustion: r=-0.14, p=0.032; personal accomplishment: r=0.27, p<0.001). CONCLUSION: Although most HCPs reported good mental health, this study suggests that a subset of HCPs experienced symptoms of depression, anxiety, burnout or thoughts of self-harm during the Tokyo 2020 and Beijing 2022 Paralympic Games. While the generalisability of these findings outside of COVID-19 restrictions should be tested, appropriate guidance and mental health support of HCPs leading up to the Paralympic Games should be prioritised.

Crip the elders and get out of white privilege free.

The question of identity positioning in relation to engagement with issues of social exclusion is complex. I am a white non-disabled South African man working on disability and care issues. I reflect on my representation of my parents, through memoirs and of Elsa Joubert, a doyenne of African writing. My depiction of these people as profoundly affected by disability and illness provides me as a privileged white scholar a way of marking my difference from stereotypical oppressive positioning. Though my rhetorical manoeuvres do not undercut the intention of my work, they point to broader, difficult questions about positioning and identity politics. I use my links to and concern with disability and illness to signal my appreciation of difference and exclusion, but questions of power and positioning remain.

Examining the understandings of young adult South African men who stutter: The question of disability.

BACKGROUND: A disability studies approach seeks to understand and address political and social issues that affect disabled individuals. Disability studies scholars employ various models of disability to address and oppose the oppression and discrimination of disabled individuals. A disability studies approach, however, has largely been absent in studies that have investigated the lived experiences of people who stutter. AIM: To examine the understandings young adult South African men who stutter hold of whether, and in what way, stuttering may be considered to be a disability. METHODS & PROCEDURES: A total of 15 men who stutter, aged 20-39 years, participated in the study. Semi-structured interviews and two focus groups discussions were conducted to collect data for the study. The data were analysed according to a phenomenological approach and the affective turn in social research. OUTCOMES & RESULTS: The results indicated that some men in this study understood stuttering as a speech disorder that can be controlled, while other men constructed stuttering as a disability, subjectively positioning themselves either as disabled or non-disabled men. CONCLUSIONS & IMPLICATIONS: This article emphasizes the importance of adopting a disability studies approach when examining the lived experiences of people who stutter and enhancing intervention strategies to adequately address the disabled needs of such individuals. WHAT THIS PAPER ADDS: What is already known on the subject? The past few decades have seen researchers investigating the personal and social experiences of people who stutter. However, empirical studies exploring the disabling experiences of people who stutter have been absent from the existing body of knowledge. What this paper adds to existing knowledge? This research aimed to provide comprehensive insight into the disabling experiences of people who stutter. The results gave an insight into the oppression and disablism experienced by people who stutter. More specifically, the findings demonstrated how individuals who stutter are disabled by oppressive communication practices that dominate spaces of education and employment. What are the potential or actual clinical implications of this work? Several men in this study attended speech therapy to gain control over their stuttering. For a number of participants, speech therapy proved a valuable experience, while others saw speech therapy as being out of touch with their lived reality of stuttering. Speech and language therapists are encouraged to employ a disability studies approach in order to enhance intervention strategies to adequately address the disabling needs of people who stutter.

'I am Dying a Slow Death of White Guilt': Spiritual Carers in a South African Hospice Navigate Issues of Race and Cultural Diversity.

Culturally appropriate spiritual care is increasingly recognised as a crucial component of spiritual care. As part of a larger study, we were interested in cultural and racial issues as experienced by spiritual carers in a hospice in Cape Town, South Africa. We conducted one-on-one interviews and focus group discussions with a cohort of spiritual care workers, who, being volunteers and relatively privileged South Africans, discussed their sensitivity to cultural issues, but also mentioned a host of political, racial and identity issues which profoundly affect their work. The data suggest that the concept of culturally appropriate care must be understood and acted on contextually. We note that the work of transformation of care cannot be separated from broader questions of social inequality and change.

Spiritual care practices in hospices in the Western cape, South Africa: the challenge of diversity.

BACKGROUND: South Africa is a very diverse middle-income country, still deeply divided by the legacy of its colonial and apartheid past. As part of a larger study, this article explored the experiences and views of representatives of hospices in the Western Cape province of South Africa on the provision of appropriate spiritual care, given local issues and constraints. METHODS: Two sets of focus group discussions, with 23 hospice participants, were conducted with 11 of the 12 Hospice Palliative Care Association registered hospices in the Western Cape, South Africa, to understand what spiritual care practices existed in their hospices against the backdrop of multifaceted diversities. The discussions were analysed using thematic analysis. RESULTS: Two prominent themes emerged: the challenges of providing relevant spiritual care services in a religiously, culturally, linguistically and racially diverse setting, and the organisational context impacting such a spiritual care service. Participants agreed that spiritual care is an important service and that it plays a significant role within the inter-disciplinary team. Participants recognised the need for spiritual care training and skills development, alongside the financial costs of employing dedicated spiritual care workers. In spite of the diversities and resource constraints, the approach of individual hospices to providing spiritual care remained robust. DISCUSSION: Given the diversities that are largely unique to South Africa, shaped essentially by past injustices, the hospices have to navigate considerable hurdles such as cultural differences, religious diversity, and language barriers to provide spiritual care services, within significant resource constraints. CONCLUSIONS: While each of the hospices have established spiritual care services to varying degrees, there was an expressed need for training in spiritual care to develop a baseline guide that was bespoke to the complexities of the South African context. Part of this training needs to focus on the complexity of providing culturally appropriate services.

Challenges and opportunities for spiritual care practice in hospices in a middle-income country.

BACKGROUND: Spiritual care is a key component of palliative care, but it has been overlooked and understudied in low- and middle-income country contexts, especially in Africa. In this study we sought to establish what the current spiritual care practices are in hospice palliative care settings in South  Africa with a focused view on what spiritual care training is currently offered and what training needs still remain unmet. METHODS: We explored spiritual care practices, and training needs, through a national quantitative online study of palliative care organisations in South Africa registered with the Hospice Palliative Care Association of South Africa. A survey was sent to representatives of all member organisations listed on the national database of Hospice Palliative Care Association of South Africa. Viable data from 41% (n = 40) member organisations were analysed through the use of simple statistics. RESULTS: An expressed need (75%; n = 30) was recorded for the development of a national spiritual care curriculum. Although 48% (n = 20) of the member organisations were willing to participate in the development of a spiritual care curriculum, 37% (n = 14) could not participate, citing financial (n = 27), time (n = 31) and expertise constraints (n = 22). A set of hard and soft skills were suggested to suit the diverse South African context. CONCLUSIONS: Spiritual care was seen by participants as a key component of palliative care. International  curricula  in spiritual care, while useful, do not offer easy adaptation to the diversities of South Africa. A bespoke spiritual care curriculum was called for, for diverse South Africa.

Moving Beyond Text-and-Talk in Qualitative Health Research: Methodological Considerations of Using Multiple Media for Data Collection.

Qualitative researchers are increasingly making use of multiple media to collect data within a single study. Such approaches may have the potential to generate rich insights; however, there are also potential methodological challenges in simultaneously analyzing data from multiple media. Using three case studies from our work with women who had recurrent breast cancer in South Africa, we explore four challenges of using multiple media to collect data: (a) how to understand the repetition of themes (or lack thereof) across multiple media; (b) whether or not data collected from multiple media over a protracted period should be read as longitudinal data reflecting a dynamic process; (c) what impact using multiple media has on the participant-researcher relationship; and (d) how the medium may shape the data obtained. We propose that the value of using multiple methods lies in the opportunity they provide to understand how participants engage with the different media.

Spiritual Care: Motivations and Experiences through the Lenses and Voices of a Cohort of Spiritual Care Workers at an Established Hospice in Cape Town, South Africa.

While palliative care is beginning to gain prominence in South Africa, spiritual care remains less understood. Spiritual care is less prioritised and, consequently, this service, if offered, is mostly entrusted to volunteers. It therefore becomes prudent to understand who these volunteers are, what motivates them to volunteer, and how they see spiritual care being sustainable in the future. A cohort of spiritual care workers from a prominent hospice in Cape Town, South Africa, participated in this qualitative study. The participants made suggestions about formalising spiritual care as well as making a call for a basic entry requirement into spiritual care work.

Associations of premorbid adjustment with type and timing of childhood trauma in first-episode schizophrenia spectrum disorders.

BACKGROUND: Childhood trauma may contribute to poorer premorbid social and academic adjustment which may be a risk factor for schizophrenia. AIM: We explored the relationship between premorbid adjustment and childhood trauma, timing of childhood trauma's moderating role as well as the association of clinical and treatment-related confounders with premorbid adjustment. SETTING: We conducted a secondary analysis in 111 patients with first-episode schizophrenia (FES) disorders that formed part of two parent studies, EONKCS study (n =73) and the Shared Roots study (n =38). METHODS: Type of childhood trauma was assessed with the Childhood Trauma Questionnaire, short-form and premorbid adjustment using the Premorbid Adjustment Scale. Timing of childhood trauma was assessed using the Life Events Checklist and life events timeline. Linear regression analyses were used to assess the moderating effect of timing of childhood trauma. Clinical and treatment-related confounders were entered into sequential hierarchical regression models to identify independent predictors of premorbid adjustment across key life stages. RESULTS: Childhood physical neglect was associated with poorer premorbid academic functioning during childhood and early adolescence, and poorer premorbid social functioning during early and late adolescence. By hierarchical regression modelling (r 2 = 0.13), higher physical neglect subscale scores (p = 0.011) independently predicted poorer premorbid social adjustment during early adolescence. Timing of childhood trauma did not moderate the relationship between childhood trauma and premorbid functioning. CONCLUSION: In patients with FES, childhood physical neglect may contribute to poorer premorbid social functioning during early adolescence. This may provide us with an opportunity to identify and treat at-risk individuals earlier.

The Benefits of Robust Debate About the Place of Qualitative Research in Suicide Prevention.

It is important to give voice to people with lived experience of suicidal behaviour, but as with all narrative data, insider accounts raise methodological and interpretive challenges. A key question is that of how to work with narratives about suicide in a way that affirms both the value and the limitations of the data, so that qualitative evidence may responsibly be used to inform real-world interventions. Scholars who claim that insights gained through qualitative research have consequences for suicide prevention, should be able to provide evidence for this claim. There may be a contradiction between claiming to work within a paradigm that rejects ideas about linear cause-and-effect thinking in suicidology, while simultaneously asserting that insights from qualitative research will have a cause-effect impact on the challenging real-world practice of suicide prevention. Robust methodological debate will strengthen the field of qualitative suicidology.

South African International Migration and its Impact on Older Family Members.

In this article, we explore the impact of South African families' emigration on parents/grandparents who must renegotiate their lives in their loved ones' physical absence. We adopted a transnational perspective in a bigger qualitative project to consider both sides of the migratory spectrum. Here we focus on elderly family members who remain behind-a group largely neglected in prior research. Our findings illustrate the complex emotions and relational changes experienced by elderly people whose families emigrate. New technologies bridge distances, allowing new ways to connect and take care of each other, and of re-imagining transnational relationships and what constitutes family life, but these bridges cannot negate the loss experienced by those remaining. People have to make sense of the emigration and forge new relational bonds with remaining family members. Our findings stress grandparents' meaningful role in a family system and highlight some gendered and racial differences in families' experiences.

En este artículo analizamos el efecto de la emigración de familias sudafricanas en los padres/abuelos que deben renegociar sus vidas ante la ausencia física de sus seres queridos. Nosotros adoptamos una perspectiva transnacional en un proyecto cualitativo más grande para tener en cuenta ambos lados del espectro migratorio. Aquí nos centramos en los integrantes ancianos de la familia que se quedan, un grupo en gran parte abandonado en investigaciones previas. Nuestros hallazgos ilustran las emociones complejas y los cambios relacionales sufridos por los ancianos cuyas familias emigran. Las nuevas tecnologías tienden puentes y acortan distancias, ya que permiten nuevas maneras de conectarse, de cuidarse mutuamente y de reinventar las relaciones transnacionales y lo que constituye la vida familiar, pero estos puentes no pueden anular la pérdida sufrida por los que se quedan. Las personas tienen que dar sentido a la emigración y forjar nuevos lazos relacionales con los familiares que se quedan. Nuestros resultados acentúan el papel significativo de los abuelos en un sistema familiar y destacan algunas diferencias por género y raza en las experiencias de las familias.

Caregivers' and parents' explanatory models of intellectual disability in Khayelitsha, Cape Town, South Africa.

BACKGROUND: Post-apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition. METHOD: We conducted 20 semi-structured interviews with primary caregivers and parents of children with intellectual disability residing in Khayelitsha, a low-income setting in Cape Town, South Africa. We used Kleinman's Explanatory Models (EMs) of illness to explore terms used to describe and conceptualize this condition. RESULTS: Carers' explanatory models included biomedical causes, injuries during pregnancy or birth, as well as spiritual causes. It was reported that there were significant difficulties in accessing services and support, and difficulties with coping in the context of extreme poverty and deprivation. CONCLUSIONS: Current findings highlight a need for collaboration between the biomedical and alternative healthcare systems in educating carers and parents regarding intellectual disability.

Where there is no evidence: implementing family interventions from recommendations in the NICE guideline 11 on challenging behaviour in a South African health service for adults with intellectual disability.

BACKGROUND: Low- and middle-income countries often lack the fiscal, infrastructural and human resources to conduct evidence-based research; similar constraints may also hinder the application of good clinical practice guidelines based on research findings from high-income countries. While the context of health organizations is increasingly recognized as an important consideration when such guidelines are implemented, there is a paucity of studies that have considered local contexts of resource-scarcity against recommended clinical guidelines. METHODS: This paper sets out to explore the implementation of the NICE Guideline 11 on family interventions when working with persons with intellectual disability and challenging behavior by a group of psychologists employed in a government health facility in Cape Town, South Africa. RESULTS: In the absence of evidence-based South African research, we argue that aspects of the guidelines, in particular those that informed our ethos and conceptual thinking, could be applied by clinical psychologists in a meaningful manner notwithstanding the relative scarcity of resources. CONCLUSION: We have argued that where guidelines such as the NICE Guidelines do not apply contextually throughout, it remains important to retain the principles behind these guidelines in local contexts. Limitations of this study exist in that the data were drawn only from the clinical experience of authors. Some of the implications for future research in resource-constrained contexts such as ours are discussed. Smaller descriptive, qualitative studies are necessary to explore the contextual limitations and resource strengths that exist in low- and middle-income settings, and these studies should be more systematic than drawing only on the clinical experience of authors, as has been done in this study.

Rethinking obstetric violence and the "neglect of neglect": the silence of a labour ward milieu in a South African district hospital.

BACKGROUND: Research into the mistreatment of women during childbirth has increased over recent years. Overt violence is an important focus of research, but recently there has been increasing recognition that there are other ways in which women in labour may be uncared for or even hurt. As part of a larger study focussing on staff responses to stillbirths, we wanted to gain contextual information on how high risk pregnancies are handled in general in Khayelitsha Hospital, a district hospital in an impoverished urban setting in the Western Cape Province of South Africa. This health care system experiences an immense patient load, the poverty of the community it serves, and the numerous traumas affecting both patients and staff. METHODS: In order to obtain rich exploratory data, a qualitative research methodology was used. The primary data source was observations in the labour ward, interviewing labour ward staff (doctors, nurse, and cleaners). The secondary data source was the analysis of hospital documents, specifically those related to labour ward policy. RESULTS: From our numerous observations and discussions, it is clear that no one is being overtly mistreated in this hospital and patients are medically well attended to. Although we saw no physical abuse, we noted the silence in the ward. Beside medical related interactions, we also noted that there were limited interactions between the women and the health care providers. CONCLUSIONS: Silence can be a form of neglect as it leaves the women feeling uncared for and not seen. In an overburdened health care system where both staff and patients are often overwhelmed or traumatised, silence can be a way in which a system defends itself against what it knows it cannot provide.

Mental health symptoms and disorders in Paralympic athletes: a narrative review.

OBJECTIVES: This narrative review summarises the literature on the mental health of Paralympic athletes, explores possible reasons for the paucity of research in this area and suggests directions for future research. METHODS: A systematic search of PubMed, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, SPORTDiscus, Scopus, and Cochrane databases was conducted using search terms related to disability, sport and mental health. RESULTS: The search yielded 665 publications. Of these, 129 were duplicates, resulting in 536 publications identified for initial screening. A total of 72 publications were to be relevant at initial screening. Only seven publications addressed Paralympic athletes specifically. Of these papers, three included measures of depression and three included measures of anxiety. In the studies that were not concerned with mental health symptoms or disorders, the focus of enquiry included identity and self, stress, and well-being. CONCLUSION: Most of the studies reviewed are small in scale, and there are almost no comparative data on Paralympic versus Olympic athletes. There is a paucity of data on rates of mental health symptoms and disorders in this population and the factors that might contribute to poor mental health among elite athletes with disabilities. We propose that stereotypes about people with disabilities-and the disability rights movement's rightful reaction to these stereotypes-have created barriers to mental health research among Paralympic athletes. There is a need for enquiry into the differential stressors experienced by Paralympic athletes, including trauma, transition out of sport, sport and personhood, and the potential for disability sport to promote psychological health.

Mental health in elite athletes: International Olympic Committee consensus statement (2019).

Mental health symptoms and disorders are common among elite athletes, may have sport related manifestations within this population and impair performance. Mental health cannot be separated from physical health, as evidenced by mental health symptoms and disorders increasing the risk of physical injury and delaying subsequent recovery. There are no evidence or consensus based guidelines for diagnosis and management of mental health symptoms and disorders in elite athletes. Diagnosis must differentiate character traits particular to elite athletes from psychosocial maladaptations.Management strategies should address all contributors to mental health symptoms and consider biopsychosocial factors relevant to athletes to maximise benefit and minimise harm. Management must involve both treatment of affected individual athletes and optimising environments in which all elite athletes train and compete. To advance a more standardised, evidence based approach to mental health symptoms and disorders in elite athletes, an International Olympic Committee Consensus Work Group critically evaluated the current state of science and provided recommendations.