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Supplemental Material for Using qualitative study designs to understand treatment burden and capacity for self-care among patients with HIV/NCD multimorbidity in South Africa: A methods paper by Myrna van Pinxteren, Nonzuzo Mbokazi, Katherine Murphy, Frances S Mair, Carl May and Naomi S Levitt in Journal of Multimorbidity and Comorbidity

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to multimorbidity (the occurrence of two or more chronic conditions). These adversely affect health outcomes, increase patients’ treatment burden, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring treatment burden among people living with HIV/NCD multimorbidity in South Africa. The detailed findings of the data analysis are to be presented elsewhere. Methods: We undertook a comparative qualitative study to examine the interaction between individuals’ treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2020. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs.

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing two epidemics: HIV and the rising burden of non-communicable diseases (NCDs) and multimorbidity. These colliding epidemics adversely affect health outcomes,increase patients’ treatment burden and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring treatment burden among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a qualitative comparative study to examine the interaction between individuals’ treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2020. Data was analysed through framework analysis. Findings: This paper discusses the methodological processes considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: Findings in this paper, plus additional outputs being developed, offer valuable insights into patients’ daily self-management of multimorbidity experienced in a context of socio-economic disadvantage in a LMIC. This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs.

This study explains how low-income employed mothers navigate care strategies for their young children (0-4 years). The study considers the constraints within which they make ‘choices' about caring for their children using the market, kin and state. In addition, the study argues that these ‘choices' are immensely constrained and that the low-income employed mothers have no real choice. For many women, the ‘feminisation of the workforce' – the growing number of women in paid work – has entailed enormous stress and pressure, as they combine strenuous paid work with the demands of mothering. Low-income employed mothers must balance paid with unpaid work, in ways that are different to women who have more resources. This study analyses how women do this within households where gendered roles and a gender hierarchy continue to prevail. In some cases, low-income employed mothers must take on not only do the ‘work' of managing the household but also the additional ‘work' of soliciting the fathers for financial support and involvement in at least some aspects of their children's lives. This is a phenomenon that existing literature has not captured. The work performed by low-income employed mothers is shaped by changes in the family structure and kinship relations. The family structure in South Africa has been described as disintegrating and in crisis. I argue that the presence of paternal kin had traditionally been a pertinent one in the life of a child (specifically in KwaZulu-Natal, the study site) based on patrilineal belonging. This has significantly shifted and has implications for low-income employed mothers already stretched thin balancing work and childcare with limited support. The ‘choices' made by working women are also framed by their understanding of motherhood, which are in turn framed by cultural and societal expectations and perceptions. Having engaged with the balance between paid and unpaid work (and other forms of work – cognitive work and the work of chasing money and involvement) that the mothers must do (mothering practices), the thesis makes sense of Zulu ideals about motherhood, and how these have shaped and informed the experiences of the mothers, in the present context of the changing position of women. Mothers are nearly always the gatekeepers for the provision of care for children. This study uses the lived experiences of low-income employed mothers to show that they cannot exercise much choice in determining how to provide care for their preschool children. Most of the institutional options – both through the market and the supposed state – are constrained by their inability to afford to look for better options and by their lack of time to travel to better options. Familial or kin options are constrained by the ambivalence of kin and mothers' own expectations and understandings of their own roles. The result is that employed mothers are often on their own, piecing together a combination of childcare arrangements that is very far from the ideal childcare they would like to provide for their children. Low-income employed mothers need to be supported in their roles as employed mothers; this would be possible through subsidized public provision of quality early childhood services. However, policy implications of this would need to be considered. For instance, what would quality childcare provision cost the state? Is it feasible in a country still working on undoing the policy implications of the apartheid state? It could be that the state might not have the capacity to organize this. The South African state has a very poor track record in converting public expenditure into high quality public services. Lessons from this can be drawn from a few examples, for instance health care, education and housing (which are problematic). This thesis adds to the literature in using the lived experiences of employed mothers to show that neither the state nor the market nor kin provide an adequate safety net for the care of the children of low-income employed mothers.

In most parts of the world, men engage much less with health services as compared to women, are less inclined to access preventative services, and have a higher probability of dropping out of care. The Movement for Change and Social Justice is a non-profit organisation focused on empowering the community and ensuring that individuals have sufficient knowledge on health and social matters. In line with this objective, the organisation established a Men's Forum – a program intended to create a space for men to express themselves freely without fear of judgment, as well as foster knowledge on health and social issues that concern men. The purpose of this study is to evaluate how activities of the MCSJ Men's Forum worked to promote or hinder men from effectively engaging with health care services in the community of Gugulethu. Participants were purposively sampled, and a total of 12 were engaged in semi-structured in-depth interviews. The qualitative study made use of Braun and Clarke's 6-phase approach to thematic analysis. The findings reflected seven main themes guided by the Masculinities and Men's Reproductive Health Practices and Outcomes conceptual framework. The study concluded that the Men's Forum plays a vital part in the support and empowerment of men across various age groups in optimising their health, acting as a conduit for health information and services. The implications of this study could mean it essential to include and train community health workers in engaging men with health care services regularly with an additional focus on privacy and cultural sensitivity regarding male patients in soft skill training. Engagement through facilitating health screenings, talks, dialogues, and workshops in the community as part of community outreach health practices could aid in spreading awareness and encourage future access for men.

The existing global literature shows that men living with HIV need efficient antiretroviral treatment (ART) delivery. Adherence clubs (ACs) have been identified as one way to improve retention of stable patients living with Human Immunodeficiency Virus (HIV). ACs are among several strategies that have been said to potentially assist in the engagement and mobilization of men in HIV services. However, very few have been evaluated to see whether they are effective in this regard. This qualitative study examines the facilitating factors that help retain and engage men in HIV services by trying to understand the perceived effectiveness of the Adherence Club in Gugulethu. The study employs a qualitative approach to explore the facilitating factors which help retain and engage men in HIV services. A total of 12 participants participated in in-depth telephonic interviews. The participants included stakeholders of the AC such as the health workers (facilitators, nurse, community health worker (CHW) and adherence counsellors), men attending the club and family members who are indirectly involved in supporting participants engagement in the AC as patients. Interviews were conducted in IsiXhosa and for data analysis, they were translated to English, and a thematic analysis was done. The findings show facilitating factors in all stages of the socio-ecological model with the patient level being the vital stage which allows for the integration of other level factors. This study shows that when men properly utilize the different resources provided for their HIV treatment, their engagement and retention in the AC improves. It is therefore key for policy makers to consider planning for male-focused health services to ensure that men view health services as spaces which are inclusive and tailored for them to improve their engagement and retain them in health services.