Young people with HIV attending a transition clinic in Kampala, Uganda: an exploratory study of social context, illness trajectories, and pathways to HIV testing and treatment

Despite global improvements in antiretroviral treatment (ART) access, little is known about how young people with HIV initially enter treatment. This article explores young people’s trajectories towards HIV treatment: how, when, and with whom testing and treatment decisions are made and the role of adolescents themselves in this process. In 2009, this study conducted 20 in-depth interviews with male and female adolescents attending the HIV/AIDS Transition Clinic at the Infectious Diseases Institute in Mulago Hospital, Kampala, Uganda.

The ulterior objective was to understand pathways to HIV testing and treatment and how these can inform care and support services for young people in Uganda. In particular, earlier disclosure may facilitate positive coping strategies and engagement in care.

The study found that ,any respondents were likely infected with HIV at birth, most tested and learned their sero status as teenagers after repeated illnesses or perceived risky sexual behavior. It was also discovered that young people encountered both obstacles and opportunities in their HIV treatment-seeking efforts; Caregivers’ decisions and actions or an absence of specialist HIV services and skills caused delays in ART enrolment; Health workers played an important role in referral and connecting young people to care. The urgency of young people themselves, once they realised that their illness could be HIV, was also crucial in ensuring prompt HIV testing and treatment-seeking; Young people who believed they were infected through mother-to-child transmission saw themselves as innocent victims and appeared motivated to combat HIV while those suspecting sexual transmission found disclosure to parents difficult and described feelings of guilt, regret, and self-blame.

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