The People Living with HIV (PLHIV) Stigma Index is a standardized tool to gather evidence on how stigma and discrimination impacts the lives of people living with HIV. It was developed to provide much-needed data and evidence that could be used to advocate for the rights of people living with HIV.
More than 100 countries have completed the study and over 100.000 people living with HIV have been interviewed
The PLHIV Stigma Index was developed to be used by and for people living with HIV and was created to reflect and support the Greater Involvement of People living with HIV and AIDS (GIPA) principle, where PLHIV networks are empowered to lead the whole implementation of the PLHIV Stigma Index study in their respective country.
PLHIV Stigma Index 2.0
The PLHIV Stigma Index was developed by GNP+, ICW, UNAIDS and IPPF. It was first launched in 2008. Ten years on, in 2018, a new version of the tool was launched, that reflect shifts in the HIV epidemic and the global response: the PLHIV Stigma Index 2.0. Some of the main changes include:
- New questions focussing 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.
In addition to the updated tool, a standardized methodology was introduced in 2020, that all PLHIV Stigma Index implementations must adhere to. Using a standardized methodology across the different implementations increases comparability over time and across different settings.
The Principles of the PLHIV Stigma Index
The underlying principle of the PLHIV Stigma Index implementation puts people living with HIV at the centre of the process. They drive how the study is designed, and how the information is collected, analysed, and used.
The guiding principles of the PLHIV Stigma Index are:
The lead network is expected to guide the entire implementation process, but it is not left to do this on its own. It is encouraged to work in collaboration with partners in country (such as research institutes) and technical assistance is available at every step of the way from the International Partnership.
Accountability and ownership
The Stigma Index centres around the GIPA principle, the Greater Involvement of People Living with HIV/AIDS. People living with HIV are not only the interviewers and the participants, but the entire research design and implementation process is led by and for people living with HIV. Local network(s) of people living with HIV decide for themselves if they would like to conduct a Stigma Index in their country and the experiences and knowledge of people living with HIV are at the centre of the whole process.
Embracing equality and diversity
Whichever network takes the lead, all those involved in the implementation process should pro-actively work to ensure gender equality and to embrace the diversity that exists among the whole community of people living with HIV, including key populations living with HIV (gay men and other men who have sex with men, transgender people, sex workers, and people who use drugs).
The data that is gathered through the Stigma Index enables a clear picture of stigma and discrimination to emerge. It also provides evidence for advocacy to shape policy and programmatic change and end HIV- related stigma and discrimination.