Research Article: “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

Date Published: October 25, 2019

Publisher: Taylor & Francis

Author(s): Robert Ssekubugu, Jenny Renju, Basia Zaba, Janet Seeley, Dominic Bukenya, William Ddaaki, Mosa Moshabela, Joyce Wamoyi, Estelle McLean, Kenneth Ondenge, Morten Skovdal, Alison Wringe.


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.

Partial Text

Although antiretroviral therapy (ART) provision across sub-Saharan Africa has reduced adult mortality (Reniers et al., 2017), premature deaths among people living with HIV (PLHIV) continue to occur (Slaymaker et al., 2017). In many settings, the burden of caring for PLHIV prior to their demise falls to relatives. The family’s role in caring for a member living with HIV can be an invaluable social capital resource (Homan, Searle, Esu-Williams, Aguirre, & Mafata, 2005) but also a safety net with holes (Seeley et al., 1993). Family members often play a crucial role in providing care at home for relatives, reminding them to go to clinic (Skovdal, Campbell, Madanhire, Nyamukapa, & Gregson, 2011), take their medication (Beals, Wight, Aneshensel, Murphy, & Miller-Martinez, 2006) and providing palliative care when close to death (Skovdal, Ogutu, Aoro, & Campbell, 2009). However, the relationship between caregivers and receivers is complex. Carer obligations are sometimes driven by fear of guilt in the event their relative dies (Zhou, 2010), while individuals receiving family support can feel obliged to maintain their health, thereby lightening the burden for their helpers (Ware et al., 2009).

A total of 44 caregivers were interviewed. In each HDSS, except Karonga, the majority were female and were 20–67 years (Table 1). Caregivers were predominantly small-scale farmers. The deceased were predominantly male (61%), and most were reported to have initiated ART (Table 2).
Table 2. Characteristics of the deceased.Characteristicsn (%)Sex Male27 (61%) Female17 (39%)Age <4012 (27%) 40+12 (27%) Unknown9 (20%)Location when care-giver first recalled relative was sick. Same/nearby village19 (43%) Far from home18 (41%) Different country3 (7%) Unspecified13 (30%)ART status Had never initiated ART2 (9%) Had initiated ART30 (66%) Unclear as to whether had initiated ART1 (0.2%) Our study adds to research exploring the experience of providing palliative care for PLHIV in rural African settings, confirming the physical, emotional and financial burden that intense caring can entail (Mburu et al., 2013). The heavy emotional burden felt by many of our participants, particularly women, was not only linked to the loss of a relative, but also due to the inherent tensions in the caregiving and care-receiving relationships between many PLHIV and family members prior to their deaths. These tensions were often rooted in the lack of acceptance of HIV status, non-disclosure, and shame that characterise these particularly vulnerable PLHIV, and led to their resistance to care-receiving. In conclusion, through family members’ accounts of recently deceased PLHIV, our study provides unique insights into caring dynamics in households prior to a HIV-related death. These caring relationships are often fraught by increasing tensions that arise due to the financial, emotional and physical burden of caring for a relative who is often an unwilling recipient of care. Interventions are needed to support family members caring for PLHIV at the end of their lives, as well as for PLHIV who struggle to overcome persistent social and structural barriers to disclosure and timely access to available HIV care services.   Source:


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