Quality of life of HIV-positive people undertaking antiretroviral therapy in Nepal: a mixed method study

Submission note: A thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Public Health to the School of Public Health and Human Biosciences, Faculty of Health Sciences, La Trobe University, Bundoora.One of the goals of antiretroviral (ARV) therapy is to improve the quality of life (QOL) of HIV-positive people. Most of the ARV therapy outcome evaluations have used methods that have been referred to as insensitive for assessing wellbeing from the users‟ perspectives. Further, evaluation of ARV therapy from the recipients‟ perspectives has not been carried out in many low-income countries, including Nepal. Investigation of QOL is important in tackling the existing problem of relatively limited ARV therapy coverage in Nepal, due to low uptake, loss to follow-up, death, and termination of treatment. This study is intended to assess and compare QOL status among six groups (sub-populations) undertaking ARV-medication in Nepal, employing a mixed-method (sequential-explanatory) comparative design. The WHOQOL-BREF tool was administered face-to-face with 152 participants who came for follow-up visits at five purposively selected study sites, and six focus group discussions (FGDs), or one for each study group, were also conducted, and analysed thematically. All six study groups had a lower QOL status (within two weeks of interview) than the general population in underlying QOL domains. The FGDs indicated that participants perceived their current QOL state as improved, as the majority said they were better at performing their daily activities, compared with their pre-ARV therapy performance. Importantly, within the cohort of ARV therapy users, the reported current QOL status varied between these six study groups: the injecting-drugs-users (IDU) group was the most satisfied with their QOL, while the group comprised of seasonal migrants and their spouses (SMandSs), and sexual-minority (SM) groups were the least satisfied. All groups reported increased satisfaction with their physical condition, although the results showed variations in the reported degree of physical wellness between groups, and even within a group the reported wellbeing status varied between individuals. These physical improvements were not reflected, however, in the psycho-social domain, and participants reported being socially distanced by their families and in their local communities, especially by the SM group and they had the lowest mental wellbeing. The SMandSs group (rural respondents) was emotionally better than other groups, due to the majority being men, who were more accepted than women by their spouses, and their community. For urban, educated respondents, maintaining confidentiality was a major issue. Together, the study findings suggest that among those undertaking ARV therapy social acceptance is crucial for overall wellbeing. The five main implications of this study for public health policy are: a need for extension of comprehensive ARV programs to rural areas, to attain equity in wellbeing; improvement of health services quality; strategic actions for the HIV-positive people’s social acceptance to protect their human rights; action for promoting optimum adherence to the ARV treatment regime; and Incorporation of QOL assessment as an integral component of monitoring and evaluation of the ARV therapy outcomes