Adhering to HIV treatment everyday for the rest of your life is difficult. This may be particularly acute for an adolescent coming to terms with their HIV status and managing the challenges of growing up with HIV. This qualitative study focused on the lived experience of HIV treatment adherence for adolescents in Uganda (aged 10-24) taking part in an international clinical trial. Our research explored the acceptability of short cycle therapy (SCT), 5 days on HIV treatment and 2 days off, to the trial participants' themselves. This involved conducted qualitative longitudinal data with young people participating in the trial and their carers using in-depth interviews, audio diaries and focus group discussions. Maintaining adherence to HIV treatment is critical to determining long-term health outcomes, yet presents specific challenges for young people which have yet to be qualitatively studied over time. This is a qualitative study investigating factors mediating adolescents’ adherence to Highly Active Anti-retroviral Therapy (HAART) in Uganda. This study was embedded within a funded, clinical trial to assess the acceptability of Short Cycle Therapy as an intervention to promote optimum adherence amongst young people. The study aimed to explore social context, barriers and facilitators to adherence amongst HIV positive adolescents in Uganda, the acceptability of Short Cycle Therapy and their experience of participating in an international clinical trial. This was of the first qualitative, social science, studies in Uganda to examine young people’s adherence experiences over time. The study is embedded within a ground-breaking international clinical trial, BREATHER, conducted by the Paediatric European Network for the Treatment of AIDS (PENTA) and Medical Research Council (MRC) in 12 countries including the UK, which is testing the efficacy of the short cycle therapy (five days on ART, two days off) as an adherence intervention in 160 young people. The study ran in parallel to a linked qualitative study among YPLHIV in the UK, recently funded by the National Institute of Health Research, and developed by the applicants. The qualitative study added significant value to the trial by examining whether this intervention is acceptable to young people and their carers in facilitating optimum adherence, which will be crucial to assessing whether this intervention can be successfully rolled out in resource-stretched settings, including nationally and regionally. This study provides much needed learning on the specific challenges young people face in adhering to treatment over time during the transition of adolescence. We also explored the varying experiences of this international trial from the perspectives of the young participants and their carers.

This was a qualitative study. We conducted three repeat in-depth interviews with 26 trial participants over the duration of the trial (2011-2014) from both the SCT and control (continuous therapy) arms. These interview were conducted towards the start of the trial, during the second half of the trial and during the process of being moved into the follow-up stage of the trial. There were two other sites connected to this study (UK and USA), funding for which came from different sources. 43 young people were involved in total in the interviews. We adopted a purposive sampling approach to reflect the diversity of the trial population in terms of sex, age and ethnicity. Participants were also invited to keep an audio diary, however we found this to be very challenging in this setting as although enthusiastic participants were not confident that they could keep their diaries safe once recorded and so generally chose not to use them. We also invited young people to keep a written diary should they have wanted to. No participants took up this opportunity. With the permission of the young people, we conducted 15 interviews with a subsample of their carers. We adopted a theoretically informed approach to our carer sample to include a wide range of carer/s, including non-biological carers, and circumstances. We also conducted 4 focus group discussions (2015) with 24 young people after they had been notified of the trial results to explore their reactions and attitudes towards SCT being rolled-out more broadly. Of this 24, 18 had been involved in the qualitative interviews through the trial and 6 trial participants were also included who had not previously been involved.