In-depth study of adherence and social costs of accessing services from home based and facility based ART delivery strategies

The adjustment to a life on ART and living with HIV as a chronic condition was found to pose significant medical, social and economic challenges for particpants in the original Jinja trial. The challenges of rebuilding a livelihood, relationships and hope devastated by HIV were shown to be considerable and as the trail ended it was apparent that people were still re-adjusting their time-orientation towards a new future, resuming productive activity to re-buildd their livelihood, which in this setting meant hard manual work or agricultural work or a difficult search for paid employmenet. For many people they were re-engaging with the 'normal struggle' of poverty. Resuming a 'normal' family life or rebuilding relationships was also important for creating a sense of order, control and 'normality'', but also posed challenges, as noted above, where participants wrestled with the question of whether, or example, to disclose to new partners or to have children. This was and is, therefore, a lot of emotional, practical and relationship 'work' to be done by people.

Two social science staff, a man and a woman (one of whom participated in the social science sub-study and is well-known and well-liked by participants and TASO staff) will meet with the social science study participants either at the TASO clinic or, if the participants agrees, at their home or place of work. They will travel by public transport so that they cannot be outwardly identified as being from an HIV-research organisation or from an organisation asociated with TASO.

If the participant agrees to be interviewed, the staff will ask about their life since the study ended, focusing on what they have been doing, how they have been feeling and the challenges and opportunities they have faced. Tape recorders will not be used, again to reduce the external trappings of 'research', so notes will be written up immediately after each interview.

For some participants we can expect to gather illness narratives, if their health has been unstable, or others information on business ventures as well as relationship histories. The excellent rapport established between participants and the social science staff in the former study gives us confidence that detailed information will be offered by participants on all aspects of their lives.