Stigma remains one of the biggest barriers preventing people living with HIV from accessing healthcare. The People Living with HIV Stigma Index was first launched in 2008. Ten years on, it was replaced by and updated and strengthened Stigma Index 2.0.
The Stigma Index is a research process that uses a standardized questionnaire to gather evidence on stigma and discrimination experienced by people living with HIV. In this initiative, the process is just as important as the product. The Greater Involvement of People living with HIV and AIDS (GIPA) principle forms the foundation of the research methodology used by the Stigma Index. People living with HIV are at the centre of the process as both interviewers and interviewees and drive how the information is collected, analysed and used - empowering all those involved and strengthening networks of people living with HIV. The Stigma Index addresses HIV-related stigma and discrimination, while also advocating on the key barriers and issues perpetuating stigma - a key obstacle to HIV treatment, prevention, care and support.
Since the project began in 2008, more than 100 countries have completed the study. More than 230 people living with HIV have been trained as interviewers and over 100,000 people living with HIV have been interviewed. The first version of the Stigma Index questionnaire has been translated into 55 languages. Since the People Living with HIV Stigma Index 2.0 has just recently been launched, we are currently working on translating the Stigma Index Questionnaire 2.0 and User Guide 2.0 into more languages.
The People Living with HIV Stigma Index 2.0
Following extensive consultations and piloting, a revised and strengthened Stigma Index 2.0 was launched in 2017. It reflects shifts in the HIV epidemic and the global response, including: new questions to better understand how stigma and discrimination affects key populations living with HIV; and a larger section looking at the impact of stigma on access to all health services, not just HIV services.
What's New in Stigma Index 2.0?
The Stigma Index 2.0 reflects shifts in the HIV epidemic and the global response. Some of the main changes include:
- New questions focus on specific populations to better understand how different groups of people living with HIV are affected by stigma and discrimination, including key populations.
- An expanded healthcare section to look at the impact of stigma on health and access to health across the whole continuum of care, not just HIV services.
- A new questionnaire that is streamlined and easier to use - the data can even be collected using a tablet.