Abstract
BackgroundHome-based care for HIV patients is popular in contexts severely affected by the epidemic and exacts a heavy toll on caregivers. This study aimed at understanding the experiences of caregivers and their survival strategies.MethodsA total of 18 caregivers (3 males and 15 females) were interviewed using a semi-structured interview guide, and thematic analysis was used to analyse the data.ResultsAnalysis suggests that the caregivers are burdened with insecure provisions for food and difficulties in accessing health care. They however survived these strains through managing their relationships, sharing burden with care-recipients, social networks and instrumental spirituality. These findings are discussed under two major themes: 1). Labour of caregiving and 2). Survivalism.ConclusionsHome-based care presents huge opportunities for community response to the HIV/AIDS epidemic in African settings. It is however burdensome and thus should not be left for families alone to shoulder. There is therefore an urgent need for protecting home-based care for HIV children in Uganda. Implications for improving and strengthening social interventions in home-based care of HIV/AIDS in the Ugandan context are addressed.
Highlights
Home-based care for HIV patients is popular in contexts severely affected by the epidemic and exacts a heavy toll on caregivers
The study has elucidated the burden of caregiving and survival strategies of caregivers of children living with HIV in Uganda
Direct social intervention programs from government to resource-limited caregiving families of HIV patients is urgently required if informal home-based care for HIV should be a viable alternative or addition to facilitybased services in Uganda
Summary
Home-based care for HIV patients is popular in contexts severely affected by the epidemic and exacts a heavy toll on caregivers. Caregivers of HIV infected persons have been severely affected by the epidemic [1, 2]. The HIV epidemic has for a long time been one of the primary causes of both child and adult mortality in HIV endemic settings within SubSaharan Africa including Uganda [3]. This has placed an enormous care-giving burden on the extended family. Depending on the intensity of caregiving, such involvement has been observed to negatively affect their domestic economy, health, physical and psychological
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