The research in Entebbe, Uganda, will analyse the experiences of people living with HIV following access to life-saving antiretroviral therapy (ART). The study aims to understand how people have responded to a new chance at life, what factors enable people to adjust to living with HIV as a chronic condition, and what support measures affect this adjustment. The study aims to inform ART delivery policy and practice in resource-constrained settings. Adjustment to a new life on ART poses medical, social and economic challenges, especially in settings of poverty. People must take treatment for the rest of their lives, and they are usually recovering after a period of serious illness and disruption to their social and economic lives. Three ART delivery sites with different modes of delivery and support will be compared. A quasi-experimental research design will be used to compare people affected and unaffected by HIV and ART, and uses complementary qualitative and quantitative methods. The research involved collaboration between four partners: The School of International Development at UEA, and in Uganda the Medical Research Council, The AIDS Support Organisation and a Ministry of Health hospital.
This multi-method study involved three phases of data collection. Phase one was anthropological in orientation and collected life-history and illness narratives from 38 participants, who were recruited from the government hospital in Entebbe, three of the hospital’s referral health-centres, and the TASO Entebbe clinic. The first qualitative interview (Interview 1, life and illness history) was not taped (detailed notes were taken). The second qualitiative interview (Interview 2) was taped, transcribed verbatim, and translated back into English by fully bi-lingual interviewers, to ensure that the meaning of data had been retained. In the third phase of data collection local enumerators administered a survey questionnaire to a cohort of 263 randomly selected participants living with HIV and on ART, as well as to a community control group (n=160) (so total sample size is 423). The survey questionnaire measured Illness Perceptions, Quality of Life (WHO QUAL Bref) and mood (Hopkins symptom checklist), mental adjustment to HIV, and socio-economic status. In addition, participants provided information of their age, gender, household size, years in education, religion and marital status.
