Adhering to HIV Treatment During Adolescence: a multi-method qualitative study in Uganda

Advances in highly active antiretrioviral HIV treatment (HAART) and its availability in the last decade have dramatically improved the prognosis for those who are infected with HIV at birth, so that many survive into adolscence. However, the history of the HIV epidemic and the global distribution of HAART means that we know very little about how young people's HIV treatment experiences changes during adolescence in resource-stretched settings. In Uganda there an an estimated 13,000 children under 14 years of age living with HIV. Paediatric treatment coverage, whilst improving, remains inadequate with only one in seven young people in need receiving HAART in Uganda, compared to less than one in three in the adult population.

Health outcomes depend on effectively adhering to treatment regimens and evidence suggests that young people find it difficult to share their HIV treatment. Ther are few published qualitative studies of the 'lived experience' over time of HIV among young people and an absence of qualitative research on the social and contestual factors influencing their treatment adherence.

This is the first soial science qualitative studey of its kind. Embedded within an international clinical randomised control trial (RCT), the study involves a team of qualitative researchers from Uganda and the UK. The RCT is testing a new administration of HIV treatment for adolescents, known as short cycle therapy (SCT) in which young people take their treatment for five days and then have two days off at the weekend. This qualitative study is based in Uganda and explores the contextual barriers and facilitators to adherence, the acceptability of SCT as an adherence strategy to young people and their experience of the trial. This will be achieved through in-depth interviews with 30 young people enrolled in the trail (evenly distributed between teh SCT arm and the control group, who continue on standard daily-administered treatment). These young people will be interviewed 3 times (before they start the trial; 40 weeks into the trial and 4 months after the trial). They will also be invited to participate in focus groups and keep an audio diary, an innovative qualitative method. 15 of the participants' carers will also be interviewd within 4 months of the trial ending to capture their reflections on their experience and experience of the trial, the process of adapting back to continuous therapy after the trial and the everyday context in which a young person's adherence is managed. We will also hold two focus groups with young people on HIV treatment not involved in the trial to explore their adherence patterns and whether this has been influenced by the trial.

This study is linked to a qualitative study taking place in the UK and another trial site. The comparative data analysis will provide invaluable knowledge for local, regional and international policy, service provision and advocacy to better support optium adherence in adolescence.