“The Adopted Children of ART”: Expert Clients and Role Tensions in ART Provision in Uganda

Abstract

The implementation of the greater involvement of people living with HIV (GIPA) principle in Ugandan AIDS care is described by focusing on the engagement of expert clients in two rural health centers during a time of antiretroviral therapy (ART) scale-up. We contrast how the expert clients help overburdened nurses to manage the well-attended ART programs in the public and in the nongovernmental organization clinic. They are unpaid, but acquire preferential status in the ART program because of their knowledge of AIDS medicines (and its adverse effects) and because of the compassionate care that they provide. Despite the assistance provided, nurses in the public facility felt threatened in their professional status by these expert clients, who were seen to overstep the boundaries of their role. We pay particular attention to the double burden for HIV-positive nurses, who fear stigma, and (unlike the expert patients) keep their HIV status secret.