2: Background to the present studies

In 1994, under the auspices of the World Health Organization’s former Global Programme on AIDS (WHO/GPA), the first steps were undertaken to develop a general research protocol to explore these issues systematically and in some depth (WHO, 1994). Given the relatively uncharted nature of the field, this protocol was developed in two parts: the first offered guidelines for a country-level extended rapid assessment of the determinants of HIV/AIDS-related discrimination, stigmatization and denial; the second provided guidelines for more in-depth study. Central to the issues highlighted were the following research questions:

· How are HIV/AIDS-related stigmatization and discrimination defined and perceived across different societies at the individual, institutional and policy levels?

· What forms do HIV/AIDS-related stigmatization and discrimination take at different stages of the epidemic and in what contexts do they occur?

· What are the main sources of HIV/AIDS-related stigmatization and discrimination?

· What are the responses to HIV/AIDS-related stigmatization and discrimination?

· What are the most appropriate research methods for analysing and understanding HIV/AIDS-related discrimination, stigmatization and denial?

After consultation with WHO’s regional offices, three countries - India, Uganda and Venezuela - were identified as having the capacity and willingness to undertake extended rapid assessments along the lines outlined in the general research protocol. In all three countries the seriousness of the epidemic among all, or certain sections of, the population warranted the commissioning of such work. Potential principal investigators from each country were subsequently invited to prepare local research proposals based on the general research protocol and to submit these to WHO/GPA for scientific evaluation and approval. The approval of national authorities and national or local ethical review committees was sought in each case. Two studies undertaken by the Tata Institute of Social Sciences in India (Dr Shalini Bharat, Principal Investigator) and by TASO in Uganda (Ms Sophia Mukasa Moniko, Principal Investigator) were subsequently funded. With the support of UNAIDS, preparatory work commenced in 1997. Work was completed in late 1998.

This report brings together highlights from these investigations. It offers:

· a review of relevant literature;

· a statement of research questions and methods prioritized by each of the local investigations;

· a description of main findings from work conducted in India and Uganda;

· a thematic analysis of issues recurring in each study site; and

· recommendations for policy, programming, practice and further research.