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The Stigma Index has had a profound effect on many people involved in the project. One of the peer interviewers, Heather Sangster-Smith describes her experience working on the Stigma Index and the insight gained from the interviews conducted with people living with HIV.
“I found the experience of interviewing people living with HIV as a privilege. People were willing to be honest and open about their lives to me. I learnt a lot about courage, resilience and genuine humanness.
Each participant trusted both myself and the process. They were very agreeable to be part of a wider project and were happy for the results of the Index to assist new thinking about public policy.
I heard both multi-layered stories and some which kept to the questionnaire with little comment. I felt honoured that each person was willing to share some of their intimate narratives with me.
There was a wide range of difference between the participants’ experiences concerning stigma and/or discrimination as part of living with HIV. This was due to the amount of disclosure the participants were willing to share and whether their status was disclosed without consent. This was often accompanied with emotion expressed in a variety of ways. I was mindful of each person for what they shared.
I found the last section of the questionnaire quite significant. The questions are under the title of POZQOL: a scale to assess quality of life of people living with HIV. Despite some participants having experienced associated trauma, I witnessed honesty and also saw strength to overcome. A good proportion stated that their life attitude had become more positive with time. Hope can live with pain. “