“There was no love there”: Intergenerational HIV disclosure, and late presentation for antiretroviral therapy in Northern Malawi

Despite access to antiretroviral testing and treatment, high rates of mortality among HIV infected infants and young children persist, often because they are diagnosed too late to benefit from treatment. Most research assumes that treatment delays are a proxy indicator for ongoing HIV-related stigma. My argument is different. Instead I argue that secrecy and truth-telling are socially produced; that is I consider how gendered and intergenerational dynamics regulate how and to whom secrets should be shared. In this article I draw on two years of ethnographic fieldwork (2008-2010) in Northern Malawi with 35 HIV positive children, their primary caregivers, as well as multiple interviews with their extended therapy networks [N = 96] and community stakeholders [N = 72] to examine how social hierarchies influenced the timing of an HIV diagnosis for infected infants. My findings indicate that it is neither necessary nor strategically advantageous for some women to disclose their HIV status to their husbands. Rather, grandparents play pivotal roles at facilitating HIV disclosure between intimate partners, which in turn leads to timely HIV diagnoses for infected children. This article contributes to a body of literature that questions the usefulness of the concept of “stigma” for understanding late presentation for ART among infants and children.