Practical and psychosocial challenges faced by caregivers influence the acceptability of multidrug-resistant tuberculosis preventive therapy for young children.

Drug-resistant (DR) strains of Mycobacterium tuberculosis (M. tb) are increasingly recognised as a threat to global tuberculosis (TB) control efforts. Identifying people with DR-TB exposure/ infection and providing TB preventive therapy (TPT) is a public health priority. TB guidelines advise the evaluation of household contacts of newly diagnosed TB cases, with the provision of TPT to vulnerable populations, including young children (<5 years). Many children become infected with TB through exposure in their household. Levofloxacin is under evaluation as TPT in children exposed to M. tb strains with resistance to rifampicin and isoniazid (multidrug-resistant TB; MDR-TB). Prior to opening a phase 3 prevention trial in children <5 years exposed to MDR-TB, the pharmacokinetics and safety of a novel formulation of levofloxacin given daily was evaluated as part of a lead-in study. We conducted an exploratory qualitative study of 10 caregivers' experiences of administering this formulation. We explored how the acceptability of levofloxacin as TPT is shaped by the broader impacts of MDR-TB on the overall psychological, social, and financial wellbeing of caregivers, many of whom also had experienced MDR-TB. Caregivers reported that the novel levofloxacin formulation was acceptable. However, caregivers described significant psychosocial challenges in the process of incorporating TPT administration to their children into their daily lives, including financial instability, withdrawal of social support and stigma. When caregivers themselves were sick, these challenges became even more acute. Although new child-friendly formulations can ameliorate some of the pragmatic challenges related to TPT preparation and administration, the overall psychosocial burden on caregivers responsible for administering TPT remains a major determinant of effective MDR-TB prevention in children.

Toward a conceptual framework of the acceptability of tuberculosis treatment in children using a theory generative approach.

To describe an early-stage holistic framework towards evaluating factors that impact the overall acceptability of TB treatment along the TB care cascade in children. We developed a conceptual framework utilising a theory generative approach. Domains were developed through review of existing definitions and analysis of existing qualitative data undertaken in acceptability studies of TB treatment in children. Clarity of domain definitions was achieved through iterative refinement among the research team. Three domains, each comprising several dimensions, were identified to holistically evaluate treatment acceptability: (1) usability, which involves the alignment between the requirements of treatment use and caregivers' and children's ability to integrate TB treatment into their everyday routines, (2) receptivity, which describes the end-user's perception and expectations of treatment and its actual use, and (3) integration, which describes the relationship between available health services and caregivers/children's capacity to make use of those services. Our framework addresses the gaps in current research which do not account for the influence of caregivers' and children's contexts on TB treatment uptake and overall acceptability. This approach may support the development of more standard, holistic measures to improve TB treatment delivery and experiences and future research in children.

Universal HIV testing and treatment and HIV stigma reduction: a comparative thematic analysis of qualitative data from the HPTN 071 (PopART) trial in South Africa and Zambia.

Despite continued development of effective HIV treatment, expanded access to care and advances in prevention modalities, HIV-related stigma persists. We examine how, in the context of a universal HIV-testing and treatment trial in South Africa and Zambia, increased availability of HIV services influenced conceptualisations of HIV. Using qualitative data, we explore people's stigma-related experiences of living in 'intervention' and 'control' study communities. We conducted exploratory data analysis from a qualitative cohort of 150 households in 13 study communities, collected between 2016 and 2018. We found that increased availability of HIV-testing services influenced conceptualisations of HIV as normative (non-exceptional) and the visibility of people living with HIV (PLHIV) in household and community spaces impacted opportunities for stigma. There was a shift in community narratives towards individual responsibility to take up (assumingly) widely available service - for PLHIV to take care of their own health and to prevent onward transmission. Based on empirical data, we show that, despite a growing acceptance of HIV-related testing services, anticipated stigma persists through the mechanism of shifting responsibilisation. To mitigate the responsibilisation of PLHIV, heath implementers need to adapt anti-stigma messaging and especially focus on anticipated stigma.

Interrogating concepts of care in the HIV care continuum: ethnographic insights from the implementation of a "Universal Test and Treat" approach in South Africa.

South Africa currently sustains the largest antiretroviral treatment (ART) programme in the world. The number of people on ART is set to grow even more in the coming years as incidence remains stable, people on ART stay healthy, and guidelines for initiation become increasingly inclusive. The South African public health sector has increasingly relied on community- and home-based lay and professional "carers" to carry out the everyday tasks of rolling out the ART programme. Drawing on ethnographic research in one locality in the Western Cape, the paper explores the care practices of two such groups of carers implementing a 'Universal Test and Treat' (UTT) approach. The UTT approach being evlauated in this place is based on one model of the HIV treatment cascade, or care continuum, which focuses on the steps necessary to identify and link HIV-positive individuals to care and retain them in lifelong HIV treatment. In this context, community-based care workers are responsible for carrying out several discrete steps in the HIV care continuum, including testing people for HIV, linking HIV-positive individuals to care, and supporting adherence. In order to retain clients within the continuum, however, carers also perform other forms of labour that stretch their care work beyond more bounded notions of a stepwise progression of care. These broader forms of care, which can be material, emotional, social or physical in nature, appear alongside the more structured technical and biomedical tasks formally expected of carers. We argue that understanding the dynamics of these more distributed and relational forms of care is essential for the effective implementation of the care continuum, and of the UTT approach, in diverse contexts.

'Low-hanging fruit': counting and accounting for children in PEPFAR-funded HIV/AIDS programmes in South Africa.

The article traces the social life of a policy that aimed to define and circumscribe the ambiguous and contested category of 'orphaned and vulnerable children' (or OVC) in South Africa at the height of the 'emergency response' to HIV/AIDS. Drawing on several months of institutional ethnographic research conducted over the course of five years with South African organisations receiving funding from the US President's Emergency Plan for AIDS Relief to provide services to 'OVC', the project interrogates the influence of governmental forms of counting and accounting on health policy and practice in South Africa. Focusing on the experiences of one organisation, the article describes a process of policy 'translation' typified by a series of disconnects between the intentions of a policy and the exigencies of implementation, structured by the ambiguous and flexible nature of the 'OVC' category. In this context, the article argues that the uncertainty produced by the implementation of the guidelines was not simply an artefact of a poorly designed policy, but rather signals an underlying epistemological tension in the practice of 'global health', in which quantitative metrics designed for monitoring and evaluation are often incapable of approximating the complexities of everyday life.