The overall purpose of this Ph.D. study is to illuminate and analyse clients' and providers' experiences with distribution and access of ART over time so as to improve the quality and sustainability of programmes of care and prevention. It builds on issues and methods developed in a recently completed study carried out in relation to the ENRECA project, TORCH, but this Ph.D. study furthermore places more emphasis on relations to providers of care and the point of view of providers on how to improve sustainability. It aims:
1. to assess the ways people on ART perceive their rights, their treatment, their social situation, the possibilities, and how these perceptions change over time.
2. to describe how local social relations and people's mobility facilitate and are affected by ART.
3. to examine the relations and nature of communication between clients and providers of care and how this influences access to ART in the long run.
4. to develop comparative case studies that illuminate different government and NGO programmes of service provision from the perspective of clients as well as providers.
The study will be undertaken in three districts. Observations will be made in one government and one NGO programme in each of the three districts. Participant observations will be made in families with people of ART. A number of people assessing treatment through different programmes will be identified and visited regularly over the course of a year and a half. Through life history and other narrative methods, a cumulative discription of the client's changing life situation, social relationshiops, perceptions of treatment, and mobilisation of resources will be constructed. The uniqueness of this study is that it will yield a longitudial account of treatment, care and prevention in different programmes from the client's as well as the provider's point of view.
Project Completion Report:
The focus of the Ph.D. thesis is how the efforts to access and live with lifelong treatment made by people with different social and economic resources, are recognized, supported, and hindered by the various care programs distributing ART in Uganda. Confidentiality turned out to be one of the most important issues in the study, i.e. one of the things that clients in treatment programs were most concerned about. Since the early days of the AIDS epidemic treatment programs have been promising confidentiality for people who test for HIV while at the same time encouraging people to be open about the HIV status. Though confidentiality is promised by the treatment programs, it is hardly ever practiced. Lack of privacy and confidentiality in treatment centers is manifested in many ways in all treatment locations starting from the waiting area to exiting the treatment centre. While confidentiality is promised by treatment programs, fhen openness — or as it is often termed in the literature: disclosure - is encouraged to take place among clients and in particular in the family and community in which the clients live. Outside of the treatment center, however, as we shall see, people do manage to control information about their situation much more successfully than in the treatment center. In this thesis these contradictions and dilemmas of confidentiality are discussed. More generally speaking the thesis is about clients' and providers' attempts to control information in different se..