Balancing the medical and the moral: home-based caregiver interventions for PLHIV in Zambia
K. Kielmann1, M. Musheke2, F. Cataldo3
1London School of Hygiene and Tropical Medicine, London, United Kingdom, 2Zambia AIDS Related TB Project (ZAMBART), Lusaka, Zambia, 3International HIV/AIDS Alliance, Hove, Brighton, United Kingdom
Background: Formal health systems in sub-Saharan Africa increasingly rely on community caregivers to support PLHIV access and adherence to antiretroviral therapy (ART). However, little is known about the impact caregivers have on the health of PLHIV in real-life settings, due to tremendous variation in formal training, status, and relationships caregivers have with their clients. In a study documenting current home-based care (HBC) practices in Zambia, one objective was to examine the impact of HBC on health-seeking trajectories of PLHIV from the perspectives of caregivers and HBC recipients.
Methods: During a one-year qualitative study with three community-based organisations providing HBC and ART-related services in Zambia, in-depth interviews were conducted with a purposive sample of 48 caregivers and 31 recipients of HBC. Interview transcripts were perused to identify emergent themes that formed the basis of a coding system. Data was coded and retrieved with Nvivo 8, then organised in matrices to facilitate further analysis relating to the central themes of caregivers' motivations, experiences of giving and receiving care, and the perceived impact of home-based care.
Results: Home-based caregivers intervene at crucial steps of the care-seeking trajectory pre- and post-ART. They often recognise thresholds of ill health and distress and persuade clients to test for HIV and to seek ART and care for co-morbidities. The intense interactions with clients are described in terms of moral interventions. Caregivers often rely on personal resources and social networks to facilitate transport and to negotiate with family members and formal care providers.
Conclusions: The study provides some indicators for qualifying the impact of community caregivers who support formal ART delivery in sub-Saharan Africa. In settings where neither ART-related training nor tasks for home-based caregivers are standardised, and impact is difficult to measure, crucial interventions that make a medical difference are grounded in moral practice and social relations, rather than formal qualifications.
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