Personal Experiences of Stigma Survey

The Personal Experiences of Stigma Survey is the result of a partnership between Pacific Aids Network (PAN) and CAI, which emerged from conversations about the potential benefits of having a harmonized tool to help us better understand stigma in our communities. This project was funded by CAI and led by a working group of PAN and CAI partners, allies, and community members who are working on stigma reduction across different fields. The working group explored how to better evaluate experiences of stigma, and the survey was ultimately informed by research and evaluation of stigma reduction.

What is stigma?

Stigma is an ongoing and persistent issue that significantly impacts people’s lives. Stigma refers to negative beliefs that society or groups of people have about someone or the negative feelings we might have about ourselves. It can affect how we think about ourselves and how others treat us. From other work on stigma, we learned that it is not one particular kind of stigma but multiple layers of stigma and discrimination that create these feelings, directed at people who use drugs, people living with HIV, people with lived experience of hepatitis C, newcomers, people who are LGBT2Q+, and others.


THIS TOOL IS FOR YOU if you are thinking about:

  • Collecting the lived and living stories and experiences of stigma in the community to raise awareness about stigma
  • Identifying and understanding structural and systemic stigmas and supporting advocacy or collective action for systems change
  • Measuring changes in how your members/clients/patients experience stigma over time or as a result of a program or service
  • Improving programs and services and to assess the differences that community organizations are making for their clients
  • Conducting research on the lived and living experiences of intersectional stigma
  • Comparing and contrasting experiences of stigma among different communities and groups


In order to access the Personal Experiences of Stigma Survey and accompanying resources PAN is asking you to provide your contact information, and is inviting you to join a community of people and groups working to address stigma. PAN staff will follow-up to learn more about the work you’re leading, and invite feedback through a short evaluation.

Please click here for more information

This work has been a result of almost 2 years of work by a group of Pacific AIDS Network partners, allies and community members who are working on stigma reduction across different fields. This working group emerged from conversations between PAN and CAI about the potential benefits of having a harmonized tool to help us better understand stigma in our communities. This work, funded by CAI, emerged in 2019 alongside the Deliberative Dialogue that highlighted the importance of expanding the work around HIV stigma to include an intersectional lens and focus on measuring stigma in a way that can tell a bigger story and move out of our silos.