“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
Loading...
Date
2019
Journal Title
Journal ISSN
Volume Title
Publisher
AIDS Care
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.
Description
Keywords
HIV, Caregiving, Carereceiving, Qualitative, PLHIV, Sub-Saharan Africa
Citation
Robert Ssekubugu, Jenny Renju, Basia Zaba, Janet Seeley, Dominic Bukenya, William Ddaaki, Mosa Moshabela, Joyce Wamoyi, Estelle McLean, Kenneth Ondenge, Morten Skovdal & Alison Wringe (2019) “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, AIDS Care, 31:6, 754-760, DOI: 10.1080/09540121.2018.1537467