Manitoba researchers looking for people to take part in a national HIV Stigma Index project are only about halfway to their goal of hearing from at least 75 people living with a positive diagnosis.
The international peer-driven research project helps understand the stigma associated with HIV and supports those living with a diagnosis.
"I wouldn't say that anybody ran out and said 'I'm gonna go get HIV today and see how that happens.' Things happen to people and it's our duty as human beings to support people no matter what they're going through," research co-ordinator Arthur Miller told CBC Information Radio Wednesday.
The Canadian HIV Stigma Index is a community-led and community-based research study, part of the international implementation of the People Living with HIV Stigma Index project
Participants are interviewed by another person living with a positive diagnosis. Interviews are about an hour-and-a-half long and can be done in person, by phone or through a video conferencing platform, said Miller, a Mi'kmaw HIV activist based out of Nova Scotia and research co-ordinator of the project with REACH Nexus, under the MAP Centre for Urban Health Solutions at Unity Health Toronto.
The national project has been done in Ontario, Quebec, Atlantic Canada and British Columbia, and this is the second time it's being done in Manitoba, with an updated survey.
Researchers collect information related to stigma, discrimination and human rights, with the aim of better understanding the social determinants and stigma across systems like health care, schools and legal fields. The research aims to help people develop supports and policies at both local and national levels.
Peer-driven aspect crucial
Jared Star, a research manager at Winnipeg's Nine Circles Community Health Centre, which specializes in HIV prevention and care, said the HIV Stigma Index's peer-driven aspect is crucial for participants.
"They know that they won't be judged," he said. "They won't have to explain situations and details that come naturally for them, because they're talking to somebody with the same experience."
Star is also a research consultant and PhD student with expertise in sexual health, alongside his work with Nine Circles, which is working closely with Miller on the project.
"It's better for the study if we can collect the data in a shorter period of time, but because it's qualitative research, it tends to take longer than a survey," said Star. "But the more we can get up front and faster, the better."
Star said the information gained from the project will help people move from a place of supporting and sustaining stigma to actively challenging and resisting it.
"I think if we do a good job and we're able to get that information and then develop interventions that target stigma, we will be able to contribute to a reduction in HIV infections in Manitoba," he said.
Education key to understanding
Much more is known about HIV now than 30 years ago — like how to prevent transmission and that it's no longer a death sentence.
With proper care, people who are HIV positive can lead long, healthy lives.
Miller said education is key and pointed to the fact that many don't understand somebody with an undetectable viral load who adheres to treatment can't transmit HIV through sexual intercourse.
"This is big for people with HIV," he said. "For me, it felt like I got part of my life back."
Manitobans willing to share their experiences through the HIV Stigma Index project can contact Miller at arthur.miller@unityhealth.to or by phone at 1-877-347-1175 to begin the process.
"The great thing about this study is we're building this network of people living with HIV," Miller said. "You're going to be talking with someone living with HIV, so they can relate and share some experiences."
HIV stigma index researchers look for Manitobans with positive diagnoses to share experience - CBC.ca
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