Title: Adhering to HIV treatment during adolescence: a multi method qualitative study in Uganda
Funder: Economic and Social Research Council

Abstract: This social science, qualitative longitudinal study is being conducted in Uganda. It has been chosen as a site due to the significant need for research into the experiences of HIV positive adolescents in adhering to HIV treatment. It is estimated that there are 130,000 children living with HIV/AIDS under the age of 14 and 30,000 infants born with HIV/AIDS every year in Uganda compared to a cumulative total of 847 in UK by the end of June 2009. However despite the gravity and scale of the problem the paediatric epidemic has received relatively little attention compared to the adult population in Sub-Saharan Africa. 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. Regionally paediatric treatment coverage is improving, but we still know very little about how growing up with HIV in this context influences young people's expectations of the future and the combined impact this has upon their treatment adherence behaviour. The international PENTA trial is being conducted in 12 countries, including Uganda. The trial presents a valuable opportunity to conduct social science research into the barriers and facilitators to optimum adherence in the Uganda context and how this changes over time in an area of current research scarcity and clear knowledge need. By being conducted in Uganda the study is able to examine the experience of participating in a trial as a process, from the perspectives of young participants and their carers, which may inform national ethical guidelines. In addition the analysis of the experiences of participants may provide ethical insights and recommendations for international trials, which are commonly conducted in a resource-stretched setting but managed by a trial team in a resource-rich setting. The collaborative relationships developed through the study between UK and Ugandan academic institutions will develop research capacity through mutual knowledge transfer. This will be substantively but also through method development in longitudinal studies, for example through the piloting of audio diaries among young people in resource stretched settings and training in analysing the data generated alongside repeat interview data. In addition the Ugandan researchers will receive training in conducting interviews which specifically examine processes over time, including both methods of data collection and approaches to analysing such data. At the end of the study the Ugandan researchers will be in a position, subject to securing funding, to conduct an ongoing cohort study with this sample independently. Given that the UK equivalent qualitative study is already funded and will involve the same UK research team, this Ugandan study will provide a unique opportunity for comparative analysis between the two settings. This comparative analysis will examine the shared and distinctive features of the experience of being an HIV positive adolescent in Uganda and the UK, which will contribute to the literature on transitions of adolescence, in relation to chronic illness more generally as well as HIV. This will also provide excellent opportunities for generating interest in disseminating the study findings.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: INFECTION