When families fail: shifting expectations of care among people living with HIV in Nairobi, Kenya

Abstract

The availability of free antiretroviral treatment in public health facilities since 2004 has contributed to the increasing biomedicalization of AIDS care in Kenya. This has been accompanied by a reduction of funding for community-based care and support organizations since the 2008 global economic crisis and a consequent donor divestment from HIV projects in Africa. This paper explores the ways that HIV interventions, including support groups, home-based care and antiretroviral treatments have shaped expectations regarding relations of care in the low-income area of Kibera in Nairobi, Kenya, over the last decade. Findings are based on 20 months of ethnographic research conducted in Nairobi between January 2011 and August 2013. By focusing on three eras of HIV treatment – pre-treatment, treatment scale-up, and post-crisis – the authors illustrate how family and community-based care have changed with shifts in funding. Many support groups that previously provided HIV care in Kibera, where the state is largely absent and family networks are thin, have been forced to cut services. Large-scale HIV treatment programmes may allow the urban poor in Nairobi to survive, but they are unlikely to thrive. Many care needs continue to go unmet in the age of treatment, and many economically marginal people who had found work in care-oriented community-based organizations now find themselves jobless or engaged in work not related to HIV.

Gender, ageing and carework in East and Southern Africa: A review

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Rethinking the family in the context of care for adolescents living with HIV in Swaziland

“…Zambian adolescents describe support groups as a "community, a source of psychosocial support … where they feel valued and offer each other a sense of identity" (Mburu et al, 2014, p. 13). Similarly, Moyer and Igonya (2014) noted the lack of family support for PLHIV in Nairobi, Kenya, and how support groups take on the role of non-biomedical support. Miller makes the same point for China in this issue.…”

Routines, Hope, and Antiretroviral Treatment among Men and Women in Uganda

“…However, rollout of antiretroviral treatment (ART) has been uneven, disproportionate, and frequently troubled (David 2014; Høg 2014; Kenworthy and Parker 2014). For those on medication, the process of taking treatment is embedded in social processes and concerns, and thus becomes part of the so-called new “normal” of living with HIV over a long period of time (Hardon and Moyer 2014a; McGrath et al, 2014; Moyer and Hardon 2014; Russell, Seeley, and Whiteside 2010). Accessing medication, however, involves understanding and knowledge of treatment protocols as imparted by clinicians, counselors, and pharmacists (Dowse, Barford, and Browne 2014).…”

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“…While hope for the future marks some experiences on medication, uncertainty has marked long-term expectations since the early days of HIV (McGrath et al 2014; Moyer and Hardon 2014). Unanticipated effects of treatment rollout can shift experiences between hope and uncertainty, particularly in settings with treatment stockouts (David 2014).…”