About the Stigma Index

The process of working with the Stigma Index is just as important as the results.

The Standards for Country Rollout and the User Guide are the basis for implementation of this tool. The fist version of the questionnaire that supports this tool has been translated into more than 55 languages. Since the Stigma Index 2.0 was launched only recently, we are still working on translating the Stigma Index 2.0 and User Guide 2.0 into more languages.

By 2018, more than 230 people living with HIV have been trained as interviewers, over 100,000 people living with HIV have been interviewed from more than 100 countries.

The Process

Operationalizing the Greater Involvement of People Living with HIV (GIPA) principle.

The People Living with HIV Stigma Index is a tool used by, as well as for, people living with HIV. The Stigma Index supports the GIPA principle through being driven by people living with HIV and their networks. By acting on this principle, the Stigma Index empowers individuals as well as communities most affected by the epidemic.

The People Living with HIV Stigma Index can be adopted by a variety of different groups of people living with HIV. These groups can then use it to understand experiences of stigma and discrimination in their locality. The use of the People Living with HIV Stigma Index over time will be instrumental in increasing our collective understanding and detecting changes and trends.

Three key features that make the Stigma Index process unique, are:

  • GIPA in action: from the beginning, the index has been developed and will be implemented by and for people living with HIV. This includes every stage of the process - from development of the index, to interviewing, analysis, and advocacy.
  • Side-by-side interviewing
  • Proactive system of referrals

The benefits of the People Living with HIV Stigma Index for those conducting it go further than collecting much-needed evidence. The process of empowering people living with HIV, their networks and communities is crucial. Therefore, the People Living with HIV Stigma Index will be both a catalyst for creating and fostering change in the communities in which it is used.

The Results

Increasing advocacy and building the evidence base.

Using the Stigma Index increases our understanding of how stigma and discrimination is experienced by people living with HIV. Besides collection evidence on how PLHIV experience stigma and discrimination, the goal of the Stigma Index is to then put this evidence into action by shaping future programmatic interventions and policies.

Policy and programme managers have long recognised that action is needed to address stigma and discrimination. The information gained from the Index will provide evidence for the success (or failures) of current programmes and highlight neglected areas requiring future action. These include improving workplace policies, informing debates about the criminalisation of HIV transmission, and promoting the realization of human rights. Consequently, the Index will be a powerful advocacy tool which will support the collective goal of Governments, NGOs and activists alike to reduce the stigma and discrimination linked to HIV.