Can we measure HIV / AIDS-related stigma and discrimination? Current knowledge about quantifying stigma in developing countries.

Abstract

HIV-related stigma and discrimination (S&D) has accompanied the AIDS epidemic from the start. Fear of and actual experience with stigma and discrimination reduce an individuals willingness to practice prevention seek HIV testing disclose his or her HIV status to others ask for (or give) care and support and begin and adhere to treatment. As efforts to address S&D increase so does the need for a set of standard tested and validated S&D indicators. Yet measures that can both describe an existing environment and evaluate and compare interventions are lacking. This report suggests ways to begin the process of quantitatively measuring HIV-related stigma in an effort to help practitioners policymakers and donors evaluate their programs. The findings from a study in Tanzania that tested a number of potential quantitative measures for stigma provide the basis for much of the data presented here including all recommendations for indicators and the questions that accompany each (Tanzania stigma-indicators field testing group 2005). The report also includes questions that were used in other studies in an effort to quantitatively measure HIV stigma. These questions which were obtained through a review of published literature and from responses to a request sent to several HIV listservs for unpublished studies are listed in Appendices A-E to demonstrate the wide range of questions being used to measure stigma. Appendices A-D also suggest indicators under which the questions might fall. The questions are organized by domain and by the population for which they were asked. (excerpt)