A new study has found participating in research over many years can give people who inject drugs a chance to share their experiences and contribute to broader knowledge.
It was also found to provide them with important insights into their own lives.
The work, published last week in the journal Drugs: Education, Prevention and Policy, revealed 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, and opportunities to address healthcare concerns, reflect on their experiences through a non-judgemental and kind interaction with a researcher, and find solutions to pressing issues in their lives.
The study interviewed research participants in Australia’s largest and longest running cohort study of people who inject drugs – SuperMIX, as well as fieldworkers who collect the data for SuperMIX.
Few studies have examined the lived experiences of long-term involvement in cohort studies for people who inject drugs, said Burnet Institute Research Fellow Dr Shelley Walker, senior author of the paper.
Undertaking such research is important to understand how to improve cohort study retention, and ensure that participants have a positive experience.
The research found that, overwhelmingly, 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.
In the words of one participant: “I suppose … not to sound corny but [I stayed in the study] to do the right thing – do the right thing and contribute something back.”
“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,” Dr Walker said.
As one participant said: “Yeah [the survey is like a] check in point and more research to make my own life a bit better.”
Another participant described the value they gained from taking part: “It’s only the last couple of times that I’ve come to realise that I’ve got a history. … There’s an ongoing record of my, yeah, my existence.”
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.”
