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Adhering to HIV treatment during adolescence: A multi method qualitative study in Uganda
Creator
Rhodes, T, London School of Hygiene and Tropical Medicine
Bernays, S, London School of Hygiene and Tropical Medicine
Janet , S, London School of Hygiene and Tropical Medicine AND MRC/UVRI Uganda
Stella, N, MRC/UVRI Uganda
Sara , P, London School of Hygiene and Tropical Medicine
Study number / PID
852538 (UKDA)
10.5255/UKDA-SN-852538 (DOI)
Data access
Information not available
Series
Not available
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. 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...
Terminology used is generally based on DDI controlled vocabularies: Time Method, Analysis Unit, Sampling Procedure and Mode of Collection, available at CESSDA Vocabulary Service.
Methodology
Data collection period
19/01/2012 - 30/09/2015
Country
Uganda
Time dimension
Not available
Analysis unit
Individual
Universe
Not available
Sampling procedure
Not available
Kind of data
Text
Data collection mode
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.
Funding information
Grant number
ES/1004785/1
Access
Publisher
UK Data Service
Publication year
2016
Terms of data access
The Data Collection only consists of metadata and documentation as the data could not be archived due to legal, ethical or commercial constraints. For further information, please contact the contact person for this data collection.