“Without the grandparents, life is difficult”: Social hierarchy and therapeutic trajectories for children living with HIV in rural Northern Malawi

Abstract

Since 2008 children infected with HIV in Malawi have had access to free adult fixed-dose combination antiretroviral treatment (ART). After four years, more than 33,000 children now have access to these life-saving medicines and the chance to transition into adolescence. However, little is known about the lived reality of growing up HIV positive in resource poor contexts and the long term therapeutic efficacy of ART regimens remain mostly speculative (Mills et al., 2011). Drawing on two years of ethnographic fieldwork conducted at a rural hospital and with HIV positive children on treatment in Malawi, I examine the daily grind within households trying to raise healthy children in precarious circumstances. While most service delivery organizations base their understandings of children's care on the model of the “family” or the “household”, I argue that they need to consider more seriously the ways that everyday social relationships in specific contexts shape long term treatment success for children. To that end, I propose that Janzen's (1978) concept of the “therapy management group” (TMG), is a more accurate, fluid and inclusive way to think about the care and treatment of children living with HIV. By drawing on specific treatment trajectories I explore how gendered and intergenerational dynamics influence the timing of HIV treatment initiation, the ability to find “good food” for children on treatment and how high mortality rates among elderly and HIV positive caregivers can both impede and promote early diagnosis and treatment adherence. Findings from this research will help pediatric and adolescent HIV care and treatment services develop community based approaches to the long term care and treatment of infected children by highlighting how important it is to avoid preconceived conceptions about how child care works in specific settings.