Factors influencing the transition from paediatric to adult HIV care in the Western Cape, South Africa: perspectives of health care providers.

Transitioning to adult care for HIV-infected adolescents is a critical process in determining long-term health outcomes. Poor transitioning to adult care can lead to several adverse HIV-related outcomes for adolescents living with HIV, including disruption of care, non-adherence to ART and virological failure. In this qualitative study, we explore the barriers to and facilitators of the transition to adult care among HIV-infected youth from the perspectives of health care workers and allied staff. We enrolled 24 health care workers and allied staff from two infectious diseases clinics in the Western Cape of South Africa. Participants took part in a once-off, semi-structured interview that was conducted face-to-face at the respective clinics. Interviews were audio-recorded and transcribed verbatim for thematic analysis using ATLAS.ti. Two superordinate themes and seven subthemes emerged from the data. We found that barriers to the transition process were related to a lack of preparedness and readiness to transition at both an institutional level and at the level of the caregiver and adolescent. At the institutional level, a lack of a transition policy and limited time and resources available for the transition process were salient barriers. At the caregiver-adolescent level, adolescents' desire for normality and caregivers' reluctance to devolve responsibility of care to their children were important barriers to the transition process. Facilitators prepare adolescents and caregivers for transition from an early age. Our findings highlight the importance of considering both adolescent, caregiver and institutional factors when preparing for the transition process. Our findings also show that pressure on the health care system precludes the time required for this process. However, counselling for transition from an early age might be an important way to negate these issues.

4 Steps To My Future (4STMF): protocol for a universal school-based pilot and feasibility study of a CBT-based psychoeducational intervention to support psychological well-being amongst young adolescents in the Western Cape, South Africa.

BACKGROUND: Mental health problems often emerge during middle childhood and adolescence. In South Africa, and in the context of high rates of poverty, violence, and adversity, many children are at a considerable risk for developing mental health problems. Access to and costs of mental health services preclude treatment for most. There is evidence that universal school-based prevention programmes are effective in well-resourced settings. However, little is known about the feasibility and acceptability of such programmes in low- and middle-income countries (LMICs), including South Africa. METHODS: This is a feasibility pilot study of 4 Steps To My Future (4STMF), a Cognitive Behaviour Therapy (CBT) school-based programme for young adolescents in the Western Cape, South Africa. This eight-session intervention will be delivered to children in grade 5 (aged 10-13 years approximately) attending two public government-run schools in the Western Cape, South Africa. We aim to enrol approximately 224 children in grade 5. We will randomise which school receives the intervention first and the other will be a delayed intervention group. We will train individuals with a post-graduate degree in psychology to facilitate the programme. We will collect demographic data on participants as well as data on primary (feasibility measures) and secondary outcomes (mental health and well-being measures). We will collect data at baseline, post-intervention, and at 1-month follow-up. DISCUSSION: This pilot study will provide data on the acceptability and feasibility of delivering a universal school-based prevention programme in South African schools. The study will provide preliminary data to inform the design of a full-scale randomised controlled trial (RCT) of a universal school-based mental health programme aimed at preventing mental health problems. TRIAL REGISTRATION: This trial is registered with the Pan African Clinical Trial Registry ( https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=10881 ) database, with unique identification number for the registry: PACTR202004803366609. Registered on 24 April 2020.

South African youth's understanding of feelings, thoughts and behaviours: Implications for the development of CBT-based mental health interventions.

BACKGROUND: Mental health problems are common in youth in low- and middle-income countries (LMICs), including South Africa. Preventative interventions, based on cognitive behaviour therapy (CBT), delivered in schools, have been found to alleviate symptoms of depression and anxiety in high income countries (HICs). However, less is known about whether youth in LMICs are able to engage with the core concepts of CBT. AIMS: To explore how young people in the Western Cape, South Africa, understand key CBT concepts, such as feelings, thoughts and behaviours. METHOD: We interviewed 22 young people (10-15 years of age; mean age 11.6 years; SD = 1.0) recruited from two public primary schools in the Western Cape, South Africa. Interviews were audio-recorded, transcribed verbatim, translated from Afrikaans into English where necessary and analysed thematically using a deductive approach. RESULTS: Young people described feelings as internal, private, and should only be shared with trusted others. They also described how feelings varied, depending on the situation. They found the concept of thoughts more challenging to describe. Youth were able to say what they do when they experience unpleasant feelings, and they linked their behaviours to their feelings and thoughts. CONCLUSIONS: In this cultural context, our qualitative investigation found evidence that young people were able to engage with abstract concepts including feelings and to some degree, thoughts. To ensure that CBT-based interventions are developmentally appropriate and accessible, psychoeducation may help youth distinguish between thoughts, feelings and behaviours, and a focus on identifying and naming feelings may be beneficial.

What should a Universal School-Based Psychoeducational Programme to Support Psychological Well-Being amongst Children and Young People in South Africa Focus on and how should it be Delivered? A Multi-Stakeholder Perspective.

Children and young people are vulnerable to developing mental health problems. In South Africa, this vulnerability is compounded by contextual risk factors such as community violence and poverty. However, mental health services are scarce and costly, which precludes access for many. Universal school-based mental health programmes can prevent the onset of mental health problems in children and young people and have been implemented to good effect in high-income settings. We sought to understand stakeholder perspectives on what such a programme should focus on and how it could be implemented in practice within the South African context. We interviewed children and young people (n = 22), parents (n = 21), teachers (n = 17), and school mental health counsellors (n = 6) recruited from two schools in the Western Cape, South Africa. Interviews were audio-recorded, transcribed verbatim and analysed thematically. We generated three overarching themes: 'the value of a mental health and well-being programme', 'content and delivery', and 'practicalities and logistics'. Participants were optimistic about the potential value of such a programme. Developing content that was appropriate for group delivery, flexible and timed to fit within the school schedule was important. Finding ways to make activities meaningful for large classes was important logistically, as was determining to what extent leaners would feel comfortable participating alongside their peers. Participants felt that outsiders, as opposed to school staff, should deliver the programme and that parents should be involved where possible. Developing a mental health programme for children and young people in the South African context requires careful understanding of who the key role players in such an intervention will be and how exactly they want to be involved and, how the challenges associated with practicalities and logistics can be overcome.

How young people experienced COVID-19 disease containment measures in the Western Cape, South Africa: A qualitative study including the perspectives of young people, their parents, teachers and school counsellors.

BACKGROUND: Little is known about the potential impact of COVID-19 disease containment measures on children's mental health and well-being, particularly in low- and middle-income countries. We sought to explore this amongst young adolescents in South Africa and from the perspectives of multiple key stakeholders. METHODS: We conducted 25 individual semi-structured telephonic interviews with children (n = 7, aged 12-13 years), teachers (n = 8), parents/caregivers (n = 7) and school counsellors (n = 3) from two public primary schools in the Western Cape, South Africa. Interviews were conducted between July and September 2020 and transcribed verbatim. The data were analysed inductively using thematic analysis procures. RESULTS: We generated three overarching themes: "locked down at home", "social disconnection" and "back to school." Children had varying reactions to COVID-19 and lockdown including excitement, frustration, anxiety, boredom and loneliness. Parents were anxious about teaching, and technology did not consistently provide the necessary support. Children felt disconnected from their peers at home, and at school, reconnecting with friends was obstructed by disease containment measures. All participants were concerned about children completing the academic year successfully and worried excessively about the implications of this year on their future. CONCLUSION: Young people and their immediate networks, in a low- and middle-income context, described a variety of negative impacts of disease containment measures emotionally, although there was a wide variety of experiences. Children, parents, teachers and counsellors all wanted resources and support and were concerned about the longer-term impacts of disease containment measures.

Instructive roles and supportive relationships: client perspectives of their engagement with community health workers in a rural south African home visiting program.

BACKGROUND: Community health worker (CHW) programs have been positioned as a way to meet the needs of those who experience marginalization and inequitable access to health care, and current global health narratives also emphasize their adaptable nature to meet growing health burdens in low-income settings. However, as CHW programs adopt more technical roles, the value of CHWs in building relationships with clients tends to be overlooked. More importantly, these programs are often reframed and redeployed without attending to the interests and needs of program clients themselves. We set out to gather perspectives of program and CHW engagement from clients of a maternal and child health program in rural South Africa. METHODS: We conducted 26 interviews with pregnant or recently-delivered clients of the Enable Mentor Mother program between February-March 2018. After obtaining informed consent, a trained research assistant conducted all interviews in the clients' home language, isiXhosa. Interviews, translated and transcribed into English, were organized and coded using ATLAS.ti software and thematically analyzed. RESULTS: We found that clients' home-based interactions with Mentor Mothers were generally positive, and that these engagements were characterized by two core themes, instructive roles and supportive relationships.. Instructive roles facilitated the transfer of knowledge and uptake of new information for behavior change. Relationships were developed within the home visit setting, but also extended beyond routine visits, especially when clients required further instrumental support. Clients further discussed a sense of agency gained through these interactions, even in cases where they chose not to, or were unable to, heed their Mentor Mother's advice. CONCLUSIONS: These findings highlight the important roles that CHWs can assume in providing both instructive and supportive care to clients; as deepening relationships may be key for encouraging behavior change, these findings pinpoint the need to bolster training and support for CHWs in similar programs. They also emphasize the importance of integrating more channels for client feedback into existing programs, to ensure that clients' voices are heard and accounted for in shaping ongoing engagement within the communities in which these programs operate.

Balancing roles and blurring boundaries: Community health workers' experiences of navigating the crossroads between personal and professional life in rural South Africa.

As demand for health services grows, task-shifting to lay health workers has become an attractive solution to address shortages in human resources. Community health workers (CHWs), particularly in low-resource settings, play critical roles in promoting equitable healthcare among underserved populations. However, CHWs often shoulder additional burdens as members of the same communities in which they work. We examined the experiences of a group of CHWs called Mentor Mothers (MMs) working in a maternal and child health programme, navigating the crossroads between personal and professional life in the rural Eastern Cape, South Africa. Semi-structured qualitative interviews (n = 10) were conducted by an experienced isiXhosa research assistant, asking MMs questions about their experiences working in their own communities, and documenting benefits and challenges. Interviews were transcribed and translated into English and thematically coded. Emergent themes include balancing roles (positive, affirming aspects of the role) and blurring boundaries (challenges navigating between professional and personal obligations). While many MMs described empowering clients to seek care and drawing strength from being seen as a respected health worker, others spoke about difficulties in adequately addressing clients' needs, and additional burdens they adopted in their personal lives related to the role. We discuss the implications of these findings, on an immediate level (equipping CHWs with self-care and boundary-setting skills), and an intermediate level (introducing opportunities for structured debriefings and emphasising supportive supervision). We also argue that, at a conceptual level, CHW programmes should provide avenues for professionalisation and invest more up-front in their workforce selection, training and support.

Living with multiple sclerosis in South Africa: how is multiple sclerosis experienced in the workplace?

PURPOSE: The aim of this qualitative study was to explore how individuals living with multiple sclerosis experience their disorder in the South African working environment. In this paper we present the experiences of office-based workers living with multiple sclerosis, their challenges, and coping mechanisms. MATERIAL AND METHODS: We purposively recruited seven participants who have been diagnosed with multiple sclerosis in the last five years. Participants were interviewed telephonically. Interviews were guided by a semi-structured interview schedule which was supplemented with additional probes. Interviews were analysed thematically using a qualitative software programme. RESULTS: We identified two superordinate themes: bringing multiple sclerosis into the workplace and adapting to multiple sclerosis in the workplace. The findings demonstrated the diverse manner in which participants chose to disclose their multiple sclerosis and manage co-workers' perceptions of multiple sclerosis. Participants employed practical strategies, such as making using of mobility aids, taking notes, conserving energy, and adapting responsibilities. Participants also negotiated accommodations, such as changing working hours, to overcome their unique challenges. Participants emphasised the importance of keeping a general positive attitude but showed reluctance to prepare for their future decline. CONCLUSION: Our findings indicate that participants manage the disclosure of their diagnosis of multiple sclerosis in order to maintain a favourable relationship with the workplace. Further, despite various physical and psychological limitations, participants were mostly able to adapt to their work environment. Although further research is required, employers and clinicians should consider focusing on the current needs of individuals living with multiple sclerosis to mitigate work-related challenges, rather than planning for future decline.Implications for RehabilitationFor individuals living with multiple sclerosis and in employment in South Africa, disclosure, management of perceptions and providing accommodations are key aspects in the experience of multiple sclerosis in the workplace.Finding ways to help those in employment disclose their MS diagnosis to employers and co-workers, is an important avenue and next step for intervention research in this field.Early adjustment and adaptation to MS in the workplace is challenging and further negotiation with line-managers regarding accommodations is often required.Employers and clinicians should focus on accommodating the needs of those diagnosed with multiple sclerosis as they arise, rather than focusing solely on the accommodations needed in the future.

South African adolescents living with spina bifida: contributors and hindrances to well-being.

BACKGROUND: Spina bifida myelomeningocele is a major cause of disability among adolescents. However, little research is available in low-income nations such as South Africa. Investigating the contributors and hindrances to well-being in adolescents with spina bifida myelomeningocele may yield novel insights. In this study we included both adolescents and their primary caregivers to examine their perspectives on caring for and facilitating improvements in the life of the adolescents living with spina bifida myelomeningocele. OBJECTIVES: To identify and document the perceptions of adolescents with spina bifida myelomeningocele and their primary caregivers on the factors that contribute to and hinder the well-being of adolescents living with spina bifida myelomeningocele in South Africa. METHOD: An explorative qualitative research design was utilized, guided by a positive psychology theoretical framework. Fourteen participants, consisting of seven adolescent-primary caregiver dyads, were interviewed. Data were analyzed using thematic analysis and coded inductively using ATLAS.ti software. RESULTS: We identified eight themes describing participants' perceptions on contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele. Contributing factors included: family support, social groups, special needs education, sport participation, striving for independence, and finding meaning in life. Hindrances included: structural (lack of resources, medical care and mobility challenges) and social (bullying and harmful friendships, secrecy about the condition, social isolation and unhappiness) hindrances to well-being. CONCLUSION: Acknowledging the contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele is crucial for guiding informed positive interventions and preventing blind spots. Given the limited number of positive contexts, concentrated effort is required to facilitate opportunities for growth in a range of environments. Primary caregivers lack insight into the positive and negative aspects of the adolescents' lives. We suggest families prioritize bonding time and open communication.Implications for rehabilitationExploring the perspectives of adolescents living with spina bifida and their parents regarding well-being is important to develop appropriate interventions.Adolescents living with spina bifida value social support and social interaction as ways to maintain well-being.Special needs education institutions with curriculums tailored to adolescents with spina bifida promote comfort, acceptance, and personal excellence.Sport contributes to the mental, social and physical well-being of adolescents with spina bifida. Sport inspires and offers opportunities for success, it improves school attendance, increases positive affect, and provides opportunities for close relationships with friends and family.Finding ways to mitigate the stigma around spina bifida is necessary to improve adolescents' well-being within South Africa.

Universal school-based mental health programmes in low- and middle-income countries: A systematic review and narrative synthesis.

Depression and anxiety pose a significant burden during adolescence, which may have consequences for adulthood and future generations. The mental health needs of children and adolescents in low- and middle-income countries are not adequately addressed due to a lack of availability and access to services, and limited intervention research in these contexts. Universal school-based interventions provide a unique and potentially scalable opportunity to prevent and address mental health concerns amongst children and adolescents in low- and middle-income countries. This systematic review aimed to identify and provide a narrative synthesis of universal school-based programmes delivered to children (aged 6-18 years) in low- and middle-income countries reporting on anxiety and/or depression outcomes. We searched Academic Search Premier, ERIC, PsycINFO, PubMed, Scopus, Web of Science, and ProQuest Dissertations using a pre-specified search strategy. Of the 12,478 articles identified, 12 studies met our inclusion criteria and were included in this review. The included studies report on a variety of interventions differing in approach, format and content. Given the small number of studies and concerns with study quality, we are unable to conclude that universal school-based interventions may reduce symptoms of anxiety and depression in children in low- and middle-income countries.

How do pregnant women and new mothers navigate and respond to challenges in accessing health care? Perspectives from rural South Africa.

Women in low- and middle-income countries and in contexts characterized by inequality face various interpersonal and structural barriers when accessing formal maternal and child health (MCH) services. These barriers persist even in contexts where programs to increase access to services, such as community health worker (CHW) interventions, have been implemented. However, while barriers to accessing care have been extensively documented, less is known about the diverse ways that women respond to, and navigate, these situations. This study explores strategies pregnant women and new mothers use to navigate and respond to health care barriers in a rural district in the Eastern Cape, South Africa. Twenty-six pregnant or recently delivered clients of the Enable Mentor Mother program were interviewed about their experiences of accessing formal MCH services. Interviews were conducted between February-March 2018 by an experienced isiXhosa-speaking research assistant, translated and transcribed into English, with transcripts coded and organized by themes using ATLAS.ti software. Facing resource shortages, inconsistent communication, and long travel times to clinics, participants employed diverse, innovative strategies to navigate interpersonal and structural barriers to care. While some participants chose to respond to barriers more passively-citing endurance and acceptance as practices of health system engagement-those participants who focused more on active responses tended to leverage their education, existing relationships, and available community resources to overcome barriers. Nevertheless, most participants described feelings of frustration and dejection. While CHW interventions may alleviate some of the burdens facing fragile health care systems in these contexts, these programs still rely on an underlying infrastructure of care that primary health care clinics and hospitals should be providing. Future programming should work in tandem with formal health systems and should support staff to improve quality of care provided to pregnant women, new mothers, and their infants to prioritize their health at a time of vulnerability.

The home visit communication skills inventory: Piloting a tool to measure community health worker fidelity to training in rural South Africa.

Community-based home visiting programs using community health workers (CHWs) have become popular modes of delivering health care services, especially in settings where health workers are overburdened and resources are limited. Yet, little is known about the processes that shape effective implementation in low-resource settings, and whether these processes adhere to home visitors' training. This study used the newly-developed Home Visit Communication Skills Inventory (HCSI) to explore the delivery of a CHW program in rural South Africa. Routine home visits from CHWs to their maternal care clients were audio-recorded with consent, and later transcribed and translated into English. The HCSI, devised and piloted using existing frameworks and program-specific training components, consisted of 21 items covering domains related to active listening, active delivery, and active connecting, and was used to score English transcripts of the home visits. The HCSI was used to generate general frequencies and aggregate scores for each CHW. Eighty-four home visits by 14 CHWs showed a diverse application of communication skills. Active listening and active delivery were common, with fewer instances of active connecting observed. Practices disaggregated by CHW showcased varying strengths by an individual. In reviewing visit characteristics, longer average visit duration was significantly correlated with the presence of multiple types of active connecting skills. While technical skills were widely observed, fewer CHWs engaged in more complex "connecting" skills. The HCSI is a feasible, low-cost, and practical way to describe home visit fidelity among CHWs. Audio-based checklists can be used to describe fidelity to a model in the absence of additional supervisory resources.

Which HIV-infected youth are at risk of developing depression and what treatments help? A systematic review focusing on Southern Africa.

BACKGROUND: Depression is common in people with HIV and is associated with lower quality of life, reduced medication adherence, worse disease progression and higher risk of transmission to others. While the majority of HIV-infected youth live in Southern Africa, research has largely focused on adults from Western countries, with limited generalisability across these populations. This review sought to identify and synthesise research on the risk factors for depression in HIV-infected youth in Southern Africa, and to summarise the available evidence on psychosocial interventions to reduce depression. METHOD: A systematic review was conducted of studies using a validated measure of depression in HIV-infected youth (aged ≤19) in Southern Africa. Eligible studies included either analysis of variables associated with depression, or evaluation of the impact of psychosocial interventions on depression in this population. RESULTS: Twelve studies met inclusion criteria for assessing risk factors, based on nine independent samples, constituting 3573 HIV-infected youth (aged 9-19 years). Study quality varied, with heterogeneous methodology limiting comparability and conclusions. There is some evidence that female gender, older age, food insecurity, exposure to abuse and internalised stigma are risk factors for depression, while disclosure of HIV status, satisfaction with relationships and social support are protective. Only one study met inclusion criteria for assessing psychosocial interventions (n = 65; aged 10-13 years). The intervention study did not successfully reduce depression, demonstrating a need for low-cost, large scale interventions to be developed and trialled. CONCLUSION: This review has highlighted the dearth of research into depression in HIV-infected youth in Southern Africa. Disclosing HIV status could be an important protective factor.

Correlates of Fatigue Among South African Adolescents Living with HIV and Receiving Antiretroviral Therapy.

Fatigue among adolescents living with HIV is poorly understood. In this study, we examined the relationships between fatigue and demographic and psychosocial variables to further the understanding of the symptom experience and associated factors. We recruited consecutive attenders at ART clinics in the Western Cape, South Africa (N = 134, age 11-18 years). Participants completed a battery of questionnaires including measures of fatigue, insomnia and mood disturbance. Just under a quarter (24.6%) of adolescents reported elevated levels of fatigue that affected their functioning. The linear combination of age, depression, and insomnia explained 40.6% of the variance in fatigue. Amongst adolescents with HIV, fatigue seems a problematic symptom associated with poor sleep and mood disturbance. Timely identification and management of these potentially disabling symptoms are needed to attain better health outcomes and retention in care in this group. Interventions aimed at ameliorating these symptoms are needed.