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Participating in research provides benefits for people who inject drugs: Study

A new study has found that participating in research can provide numerous benefits for people who inject drugs, including the opportunity to share their experiences and contribute to broader knowledge. The study, published in the journal Drugs: Education, Prevention and Policy, also revealed that participating in research can provide important insights into their own lives.

Motivators for Participation

The study, which interviewed research participants in Australia's largest and longest-running cohort study of people who inject drugs—SuperMIX—found that the opportunity to contribute to a study aiming to improve the lives of their peers was a strong motivator for people to take part. Other motivators included financial reimbursement for taking part, opportunities to address healthcare concerns, reflect on their experiences through a non-judgmental and kind interaction with a researcher, and find solutions to pressing issues in their lives.

Dr. Shelley Walker, senior author of the paper and Burnet Institute Research Fellow, said that few studies have examined the lived experiences of long-term involvement in cohort studies for people who inject drugs. Undertaking such research is important to understand how to improve cohort study retention and ensure that participants have a positive experience.

Altruistic Motivations

The research found that people continued to participate in SuperMIX surveys for altruistic reasons. "The desire to benefit someone other than themselves was often expressed as the reason for their ongoing involvement," Dr. Walker said. Participants said they wanted to "do the right thing and contribute something back."

Therapeutic Experience

While some survey questions were described as challenging to answer for participants, many spoke of completing the survey as a therapeutic-like experience that helped them reflect on their experiences in positive ways. One participant said, "Yeah [the survey is like a] check-in point and more research to make my own life a bit better." Another described the value they gained from taking part: "It's only the last couple of times that I've come to realize that I've got a history. … There's an ongoing record of my, yeah, my existence."

Positive Experience

For a range of reasons, involvement in the study was overwhelmingly described as a positive experience for most, Dr. Walker said. "Whether this was through being given the opportunity to reflect on their lives in meaningful ways, being supported to seek treatment for hepatitis C, or simply feeling that someone really cared enough about their life to listen with compassion and understanding."

Journal Information: Bebe Berryman et al, Experiences of participation in a longitudinal cohort study of people who inject drugs in Victoria, Australia, Drugs: Education, Prevention and Policy (2023). DOI: 10.1080/09687637.2023.2177523
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