Recently HIV has been framed as a ‘manageable’ chronic disease in contexts in which access to effective care is reliable. The chronic disease paradigm emphasizes self-care, biomedical disease management, social normalization, and uncertainty. Data from a longitudinal study of patients (N = 949) in HIV care at two sites in Uganda, collected through semistructured interviews and ethnographic data, permit examination of the salience of this model in a high burden, low resource context struggling to achieve the promise of a manageable HIV epidemic. Our data highlight the complexity of the emerging social reality of long-term survival with HIV. Participants struggle to manage stigma as well as to meet the costs involved in care seeking. In these settings, economic vulnerability leads to daily struggles for food and basic services. Reconceptualizing the chronic disease model to accommodate a ‘social space,’ recognizing this new social reality will better capture the experience of long-term survival with HIV.
Journal Article
