In northwest Tanzania, where AIDS has been present for 25 years, AIDS-related illness is a trigger through which community members discuss personal experiences of loss and assess social relationships. The terminal phase of AIDS demands intimate social relations between patients and caretakers. In this final phase of illness, caretakers are scrutinised for their behaviour towards the patient. In the moral world in which caregiving takes place, the act of concealing is considered an intrinsic part of proper care. Current debates on morality, stigma and secrecy inform my argument that acts of concealment around dying are not so much related to the exclusion and ostracism of patients but to inclusion and compassionate care.
As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretroviral treatment programs emphasize self-care. In the informal settlements of Mombasa, Kenya, the management of stress-associated with economic precariousness-plays a significant role in self-care practices and ideologies. Based on ethnographic fieldwork, we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with 'chronic' HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of 'protective secrecy,' others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.
Background Differentiated service delivery (DSD) offers benefits to people living with HIV (improved access, peer support), and the health system (clinic decongestion, efficient service delivery). ART clubs, 15–30 clients who usually meet within the community, are one of the most common DSD options. However, evidence about the quality of care (QoC) delivered in ART clubs is still limited. Materials and methods We conducted a concurrent triangulation mixed-methods study as part of the Test & Treat project in northwest Tanzania. We surveyed QoC among stable clients and health care workers (HCW) comparing between clinics and clubs. Using a Donabedian framework we structured the analysis into three levels of assessment: structure (staff, equipment, supplies, venue), processes (time-spent, screenings, information, HCW-attitude), and outcomes (viral load, CD4 count, retention, self-worth). Results We surveyed 629 clients (40% in club) and conducted eight focus group discussions, while 24 HCW (25% in club) were surveyed and 22 individual interviews were conducted. Quantitative results revealed that in terms of structure, clubs fared better than clinics except for perceived adequacy of service delivery venue (94.4% vs 50.0%, p = 0.013). For processes, time spent receiving care was significantly more in clinics than clubs (119.9 vs 49.9 minutes). Regarding outcomes, retention was higher in the clubs (97.6% vs 100%), while the proportion of clients with recent viral load <50 copies/ml was higher in clinics (100% vs 94.4%). Qualitative results indicated that quality care was perceived similarly among clients in clinics and clubs but for different reasons. Clinics were generally perceived as places with expertise and clubs as efficient places with peer support and empathy. In describing QoC, HCW emphasized structure-related attributes while clients focused on processes. Outcomes-related themes such as improved client health status, self-worth, and confidentiality were similarly perceived across clients and HCW. Conclusion We found better structure and process of care in clubs than clinics with comparable outcomes. While QoC was perceived similarly in clinics and clubs, its meaning was understood differently between clients. DSD catered to the individual needs of clients, either technical care in the clinic or proximate and social care in the club. Our findings highlight that both clinic and DSD care are required as many elements of QoC were individually perceived.
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