The role of children in their HIV-positive parents’ management of antiretroviral therapy in Uganda

Abstract

Adjustment to life on antiretroviral therapy (ART) and living with HIV as a long-term chronic condition, pose significant medical, social and economic challenges. We investigated children’s role in supporting HIV-positive parents to self-manage life on ART. Between 2010 and 2012, we conducted a qualitative study using semi-structured interviews with 38 HIV-positive parents who had been on ART for over a year. They were randomly selected from people accessing ART from three delivery sites in Wakiso district, Uganda. Data were analysed thematically. Participants reported children between the ages of 1 and 47 years providing support. Children were a source of happiness, self-worth, encouragement, and comfort. Both younger and older children supported parents’ adherence to treatment through reminding them to take the drugs and honour clinic appointments. Older children provided money to buy medication, food and shelter. Parents reported that the encouragement they received after they disclosed to their children enhanced their survival. After HIV disclosure to their children many of their fears about the future were allayed. Thinking about their children’s future brought hope. However, looking after younger children while on ART could be burdensome since some parents could not work to their full capacity due to reduced physical health. Children are an important resource in their parents’ adjustment to living with HIV while taking ART. There is a need for children to be supported by appropriate policy and other social and health development structures.

Keywords: Africa, care, caregivers, chronic conditions, family