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

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.

Understanding the Time Needed to Link to Care and Start ART in Seven HPTN 071 (PopART) Study Communities in Zambia and South Africa

“…In both countries people were often juggling their livelihood needs with starting ART, fearing time lost accessing care when they needed to work [ 45 ]. Some PLHIV who were the main breadwinners and had not started ART, would rather use their strength to earn an income and continue providing for their family, while they were feeling healthy, than go for treatment.…”

Test but not treat: Community members’ experiences with barriers and facilitators to universal antiretroviral therapy uptake in rural KwaZulu-Natal, South Africa

“…was prioritised over seeking care [22], especially as 'feeling healthy' was mentioned as a reason for delaying care.…”

“…barriers to seeking care [22][23][24]. During the TasP trial, care was provided in purpose-built research clinics, complemented by mobile units in the 22 communities where the trial was implemented.…”

“…Studies using qualitative data collection methods investigating factors that facilitate and hinder ART uptake in the test and treat era have been embedded within the public health system. Findings suggest that poor staff attitudes, long waiting times and distance to clinics are barriers to seeking care [ 22 – 24 ]. During the TasP trial, care was provided in purpose-built research clinics, complemented by mobile units in the 22 communities where the trial was implemented.…”

Bringing population mobility into focus to achieve HIV prevention goals

“…The links between mobility and livelihoods that affect engagement in HIV care and prevention services and interventions also figure prominently in two contributions from the PopART trial. Bond and colleagues used longitudinal qualitative data focused on the lives of six people living with HIV in urban Zambia to show the challenges of juggling household responsibility, livelihood mobility and HIV management. For five of the six, ongoing engagement in treatment could not be sustained because of travel.…”