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

Abstract

Social support is recognized as a critical resource in promoting adherence to antiretroviral therapy (ART) in 
resource-poor settings. However, supporter burn-out 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 burn-out 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 burn-out 
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 burn-out are 
serious threats to sustaining social support and concomitant adherence to lifelong ART. Integration of 
mechanisms for empowering patients to manage burn-out and stigma in HIV service delivery may improve 
prospects for sustained ART adherence in resource-poor settings.