Sustaining social support for lifelong HIV treatment: Practices of patients on antiretroviral therapy in Uganda

Social support is recognized as a critical resource in promoting adherence to antiretroviral therapy (ART) in resource-poor settings. However, supporter burnout and stigma may constrain access to social support in the long-term. Little is written about how ART clients overcome these barriers to continue accessing support for lifelong treatment. Therefore, this article examines practices that enable HIV patients in a resource-poor setting to overcome the constraints of stigma and burnout to continue accessing treatment support. The article is based on data from an ethnographic study of 50 patients enrolled on ART at two treatment sites. Fifteen of these patients were followed-up for six months. The main methods of data collection included in-depth interviews and participant observation. Dependent patients overcame the constraints of stigma and burnout through three main practices: regulating the frequency of requests for assistance, using secrecy and lies, and continuously reconstituting the treatment support group. The study concludes that stigma and burnout are serious threats to sustaining social support and concomitant adherence to lifelong ART. Integration of mechanisms for empowering patients to manage burnout and stigma in HIV service delivery may improve prospects for sustained ART adherence in resource-poor settings.