Spinning plates: livelihood mobility, household responsibility and anti-retroviral treatment in an urban Zambian community during the HPTN 071 (PopART) study.

Virginia Bond,Graeme Hoddinott,Angelique Thomas,The Hptn 071 (Popart) Study Team ,Fredrick Ngwenya,Melvin Simuyaba,Sarah Fidler,Richard Hayes,Janet Seeley,Helen Ayles

doi:10.1002/jia2.25117

Abstract

IntroductionQualitative data are lacking on the impact of mobility among people living with HIV (PLHIV) and their decision‐making around anti‐retroviral treatment (ART). We describe challenges of juggling household responsibility, livelihood mobility and HIV management for six PLHIV in urban Zambia.MethodsSix PLHIV (three men and three women, aged 21 to 44) were recruited from different geographic zones in one urban community drawn from a qualitative cohort in a social science component of a cluster‐randomized trial (HPTN071 PopART). Participants were on ART (n = 2), not on ART (n = 2) and had started and stopped ART (n = 2). At least two in‐depth interviews and participant observations, and three drop‐in household visits with each were carried out between February and August 2017. Themed and comparative analysis was conducted.ResultsThe six participants relied on the informal economy to meet basic household needs. Routine livelihood mobility, either within the community and to a nearby town centre, or further afield for longer periods of time, was essential to get by. Although aware of ART benefits, only one of the six participants managed to successfully access and sustain treatment. The other five struggled to find time to access ART alongside other priorities, routine mobility and when daily routines were more chaotic. Difficulty in accessing ART was exacerbated by local health facility factors (congestion, a culture of reprimanding PLHIV who miss appointments, sporadic rationed drug supply), stigma and more limited social capital.ConclusionsUsing a time‐space framework illustrated how household responsibility, livelihood mobility and HIV management every day were like spinning plates, each liable to topple and demanding constant attention. If universal lifelong ART is to be delivered, the current service model needs to adjust the limited time that some PLHIV have to access ART because of household responsibilities and the need to earn a living moving around, often away from home. Practical strategies that could facilitate ART access in the context of livelihood mobility include challenging the practice of reprimand, improving drug supply, having ART services more widely distributed, mapped and available at night and weekends, and an effective centralized client health information system.

Highlights

Qualitative data are lacking on the impact of mobility among people living with HIV (PLHIV) and their decisionmaking around anti-retroviral treatment (ART)
There were 1,200,000 people living with HIV (PLHIV) among whom 65% had access to antiretroviral therapy (ART) and an estimated 58% had attained viral suppression [1]
We use qualitative data to illustrate how the convergence of livelihood mobility, household responsibility and HIV creates time and space challenges for ART access that were, or could be, reduced by adjustments made both by individual PLHIV and the health system

Summary

Introduction

Qualitative data are lacking on the impact of mobility among people living with HIV (PLHIV) and their decisionmaking around anti-retroviral treatment (ART). We describe challenges of juggling household responsibility, livelihood mobility and HIV management for six PLHIV in urban Zambia. Conclusions: Using a time-space framework illustrated how household responsibility, livelihood mobility and HIV management every day were like spinning plates, each liable to topple and demanding constant attention. If universal lifelong ART is to be delivered, the current service model needs to adjust the limited time that some PLHIV have to access ART because of household responsibilities and the need to earn a living moving around, often away from home. We use qualitative data to illustrate how the convergence of livelihood mobility, household responsibility and HIV creates time and space challenges for ART access that were, or could be, reduced by adjustments made both by individual PLHIV and the health system. In the absence of a comprehensive welfare system, economic survival is often dependent on the ability to trade in assorted goods, casual work in construction and mines, charcoal making and more seasonal trading in fish and

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Discussion

Conclusion