Introducing Personal Experiences of Stigma Survey

The Personal Experiences of Stigma Survey has been a result of almost 2 years of work by a group of PAN partners, allies and community members who are working on stigma reduction across different fields. This working group emerged from conversations between PAN and the Community Action Initiative (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.

The working group brought together people with lived and living experiences as well as staff from community-based organizations, funders, academics, researchers, evaluators, and representatives from health authorities. This group spoke about gaps and needs in the ways we collect stories about, and ultimately measure stigma. It then set to work to develop a new, harmonized data collection tool by learning from existing surveys and tools that measure the experiences of stigma and then contributing their own vision to what the survey should look like. Through a mix of closed-ended and open-ended questions, the survey aims to capture the diverse experiences of stigma. The survey has been piloted both among individuals with lived and living experience and community organizations.

The survey can be used in a variety of ways – from collecting the stories of people with lived and living experience of stigma in the community, to raising awareness about stigma and advocating for change in communities, to gathering stories across communities or organizations using common measures, or to measuring changes in how organizations members/clients/patients experience stigma over time or as a result of a program or service.

In exchange for this tool and accompanying guide, we ask that you share your contact information so we can learn about how you might be using the tool, and any suggestions for improvement. We’re always open to learning from you about other stigma reduction projects and initiatives.

We would like to thank Community Action Initiative whose support allowed us to carry out this project.

If you have questions about the survey, please reach out to PAN’s Evaluation Coordinator Paul Kerber at [email protected].