Updating the People Living with HIV Stigma Index

©Institute for Social Development Studies


The issue
The People Living with HIV Stigma Index was developed by the Global Network of People Living with HIV (GNP+), the International Community of Women with HIV/AIDS (ICW), the International Planned Parenthood Federation, and UNAIDS, and is used as a tool by and for people living with HIV to document HIV-related stigma and advocate for stigma reduction. UNAIDS, in collaboration with ICW and GNP+, approached the U. S. Agency for International Development (USAID) with a request to assist with refining the content and methodology of the Stigma Index. USAID is also interested in using the Stigma Index as a tool through which the U. S. President’s Emergency Plan for AIDS Relief (PEPFAR) programs can monitor progress in HIV-related stigma reduction.


Our approach
Project SOAR is leading a collaborative effort to refine and adapt the Stigma Index.  The process includes convening a small working group (SWG) to discuss and identify gaps and ideas for refinement; coordinating a two-day consultation with key stigma measurement experts to discuss adaptation strategies for UNAIDS and USAID needs; pretesting the revised questionnaire at the 2016 International AIDS Conference in Durban, South Africa; piloting the recommended refinements in Cameroon, Senegal, and Uganda; reporting on pilot results and recommendations for refining the methodology and administration of the Stigma Index; and incorporating the results of pilot testing and people living with HIV network feedback into an updated Stigma Index questionnaire (to be called People Living with HIV Stigma Index 2.0), in collaboration with SWG members.


The impact
The People Living with HIV Stigma Index 2.0  and the findings/recommendations have been widely disseminated, including to PEPFAR, participants in the initial consultation (including people living with HIV networks), organizations that conducted the pilot tests, and other key stakeholders. In addition, the updated tool has been fielded in more than a dozen countries worldwide, including the Dominican Republic.