Abstract
ABSTRACTCaregivers mediate children’s access to HIV care and their adherence to treatment. Support for caregivers may improve health outcomes in children, but fear of HIV stigma and discrimination can affect both uptake and delivery of support services. Within a trial evaluating community-based support for caregivers of newly HIV diagnosed children in Harare, Zimbabwe, we conducted a longitudinal qualitative study to explore how stigma affected delivery and acceptance of the intervention. We conducted semi-structured interviews with 36 caregivers, 15 children, and 20 community health workers (CHWs). Children and caregivers described experiencing or witnessing stigma and discrimination, causing some to resist home visits by CHWs. Anxiety around stigma made it difficult for CHWs to promote key messages. In response, CHWs adapted the intervention by meeting caregivers outside the home, pretending to be friends or relatives, and proactively counteracting stigmatising beliefs. As members of local communities, some CHWs shared concerns about discrimination. HIV stigma can hinder “getting a foot over the threshold” in community-based programmes, particularly for households most affected by discrimination and thus least likely to engage with services. For community support programmes to be effective, stigma-related resistance should be addressed from the outset, including CHWs’ own concerns regarding HIV stigma.
Highlights
The negative effects of HIV-related stigma on people’s willingness to test, initiate treatment, and maintain adherence are well-documented (Katz et al, 2013; Merten et al, 2010; Parker & Aggleton, 2003)
We investigated how stigma affected a community-based intervention to support caregivers of children newly diagnosed with HIV in Harare, Zimbabwe
We interrogated qualitative data collected during the ZENITH trial to assess how children’s, caregivers’ and community health workers (CHWs)’ experiences of stigma affected implementation of the intervention
Summary
The negative effects of HIV-related stigma on people’s willingness to test, initiate treatment, and maintain adherence are well-documented (Katz et al, 2013; Merten et al, 2010; Parker & Aggleton, 2003). Children’s access to care is mediated by parents and other caregivers Their uptake of HIV testing and ART, attendance at clinical appointments, and adherence depend on caregivers’ willingness to engage with HIV services, which can be influenced by stigma. The use of community-based support to promote engagement with HIV care has been steadily increasing, often delivered by local community health workers (CHWs) (Hall et al, 2016; Jaffar et al, 2009). These programmes can reduce perceived stigma among recipients, including children (Sherr et al, 2016)
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