Adhering to HIV treatment during adolescence: A multi method qualitative study in Uganda

Rhodes, Tim and Bernays, Sarah and Janet , Seeley and Stella, Namukwaya Kihika and Sara , Paparini (2016). Adhering to HIV treatment during adolescence: A multi method qualitative study in Uganda. [Data Collection]. Colchester, Essex: UK Data Archive. 10.5255/UKDA-SN-852538

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.

Data description (abstract)

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.

Creator NameEmailAffiliationORCID (as URL)
Rhodes, School of Hygiene and Tropical MedicineUnspecified
Bernays, School of Hygiene and Tropical MedicineUnspecified
Janet , School of Hygiene and Tropical Medicine AND MRC/UVRI UgandaUnspecified
Stella, Namukwaya Kihikastella.namukwaya@mrcuganda.orgMRC/UVRI UgandaUnspecified
Sara , School of Hygiene and Tropical MedicineUnspecified
Research funders: Economic and Social Research Council
Grant reference: ES/1004785/1
Topic classification: Health
Society and culture
Keywords: qualitative, adolescence, chronic illness
Project title: Adhering to HIV treatment during adolescence: a multi method qualitative study in Uganda
Grant holders: Professor Tim Rhodes
Project dates:
1 April 201131 August 2016
Date published: 07 Dec 2016 16:21
Last modified: 14 Jul 2017 14:40

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