Exploring the treatment burden and capacity for self-care among patients with HIV/NCD multimorbidity in South Africa (EXTRA)

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.