“He was no longer listening to me”: A qualitative study in six Sub-Saharan African countries exploring next-of-kin perspectives on caring following the death of a relative from AIDS

Abstract

In the era of widespread antiretroviral therapy, few studies have explored the perspectives of the relatives involved in caring for people living with HIV (PLHIV) during periods of ill-health leading up to their demise. In this analysis, we explore the process of care for PLHIV as their death approached, from their relatives’ perspective. We apply Tronto’s care ethics framework that distinguishes between care-receiving among PLHIV on the one hand, and caring about, caring for and care-giving by their relatives on the other. We draw on 44 in-depth interviews conducted with caregivers following the death of their relatives, in seven rural settings in Eastern and Southern Africa. Relatives suggested that prior to the onset of poor health, few of the deceased had disclosed their HIV status and fewer still were relying on anyone for help. This lack of disclosure meant that some caregivers spoke of enduring a long period of worry, and feelings of helplessness as they were unable to translate their concern and “caring about” into “caring for”. This transition often occurred when the deceased became in need of physical, emotional or financial care. The responsibility was often culturally prescribed, rarely questioned and usually fell to women. The move to “care-giving” was characterised by physical acts of providing care for their relative, which lasted until death. Tronto’s conceptualisation of caring relationships highlights how the burden of caring often intensifies as family members’ caring evolves from “caring about”, to “caring for”, and eventually to “giving care” to their relatives. This progression can lead to caregivers experiencing frustration, provoking tensions with their relatives and highlighting the need for interventions to support family members caring for PLHIV. Interventions should also encourage PLHIV to disclose their HIV status and seek early access to HIV care and treatment services.

‘I saw it as a second chance’: A qualitative exploration of experiences of treatment failure and regimen change among people living with HIV on second- and third-line antiretroviral therapy in Kenya, Malawi and Mozambique

“…Studies from this period have highlighted how the burden of caregiving and the associated costs of illness of a family member could induce extreme poverty for the whole household, or result in various strains on the main carer (Foster & Williamson, 2000;Kipp, Tindyebwa, Rubaale, Karamagi, & Bajenja, 2007). During sustained or repeated periods of ill-health, other social relationships based on reciprocity and mutual support may also be strained or disrupted, exposing individuals to illnessrelated stigma and leaving them struggling to mobilise resources to improve their situation (Bury, 1982;Ssekubugu et al, 2018). Furthermore, the lived experiences of chronic illness can trigger profound disruptions in a person's understanding of their place in society, leading them to reconsider their future plans and identity, particularly for diseases associated with disability or death (Bury, 1982).…”

HIV and viremia prevalence in non-migrating members of migrant households in Rakai region, Uganda: A cross-sectional population-based study

“…[5] Caregivers are often family members provide a range of instrumental and emotional support, which has been linked to improved adherence to antiretroviral therapy. [17][18][19][20][21] Out-migration may result in changes to caregiving and may place those living with HIV at greater risk of viremia if there is reduced care coordination or less care support for the non-migrant.…”