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

Rhodes, T, Bernays, S, Seeley, J, Namukwaya Kihika, S and Paparini, S. 2016. Adhering to HIV treatment during adolescence: A multi method qualitative study in Uganda. [Online]. UK Data Archive, Colchester, Essex, United Kingdom. Available from: https://doi.org/10.5255/UKDA-SN-852538.

Rhodes, T, Bernays, S, Seeley, J, Namukwaya Kihika, S and Paparini, S. Adhering to HIV treatment during adolescence: A multi method qualitative study in Uganda [Internet]. UK Data Archive; 2016. Available from: https://doi.org/10.5255/UKDA-SN-852538.

Rhodes, T, Bernays, S, Seeley, J, Namukwaya Kihika, S and Paparini, S (2016). Adhering to HIV treatment during adolescence: A multi method qualitative study in Uganda. [Data Collection]. UK Data Archive, Colchester, Essex, United Kingdom. https://doi.org/10.5255/UKDA-SN-852538.

Description

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.

Methods

Description of data capture

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.

Data capture method

Interview: Face-to-face, Focus Group: Face-to-Face, Writing and/or diary

Data Collection Period

From	To
19 January 2012	30 September 2015

Date (Date published in a 3rd party system)

7 December 2016

Geographical area covered (offline during plugin upgrade)

North Latitude	East Longitude	South Latitude	West Longitude
0.413464	32.6826	0.274764	32.4938

Language(s) of written materials

English

People & Groups

Data Creators	Rhodes, T, Bernays, S, Seeley, J, Namukwaya Kihika, S and Paparini, S
LSHTM Faculty/Department	Faculty of Public Health and Policy > Dept of Global Health and Development Faculty of Public Health and Policy > Dept of Public Health, Environments and Society
Participating Institutions	London School of Hygiene & Tropical Medicine, London, United Kingdom, MRC/UVRI Uganda