Spaces for talking: Communication patterns of children on antiretroviral therapy in Uganda

Understanding the perspectives of children on antiretroviral therapy is very important in order to support them to live with treatment. This article describes how different social settings facilitate or constrain HIV+ children's communication regarding their health and medicines. Through participant observation and semi-structured interviews, we explored communication practices of 35 HIV+ children aged 8–17years. Results show that communication in homes was limited to issues about medicines and was influenced by the hierarchical structure of domestic relations, which were not conducive for communication. At the club meetings, where children were in control of the activities, the communication was more egalitarian and child centered. At the treatment centers, there were elements of both hierarchical and egalitarian communication practices. The health workers tended to be rather authoritarian, speaking mostly to adult caregivers. Efforts to control information about HIV/AIDS were evident in all the three places but were more pronounced in homes. Children were active in using the different spaces, and in seeking information about their health and treatment. The Convention on the Rights of the Child and Ugandan National Guidelines on HIV Counseling and Testing encourage more open communication than is currently the case. Adults need support to achieve this goal. •Variations in children’s communication existed in the different social spaces.•Cultural contexts and social hierarchy constrained children’s communication.•Children expressed agency to express their feelings and choices.•Controlling of information about HIV/AIDS ran through all the three spaces.•Homes are enabling in terms of care but not so in terms of communication.