Engaging Marginalized Populations in the Conduct of HIV Community Based Research

Lori LyonsCommunity Engagement in Research, Completed Studies, OHTN, People who use Drugs, Research Pages

activity-based workshop

Research Team:  Soo Chan Carusone (nominated principal investigator), Carol Strike (co-principal investigator), Adrian Guta (co-principal investigator), Curtis Cooper, Liz Creal, Karen de Prinse

What is this research about?

Drug use is a risk factor for acquiring HIV and for negative health outcomes in people living with HIV. People who use drugs are strongly impacted by HIV, but face many barriers to participating in research about HIV and community needs. As part of a CIHR-funded project about how substance use affects the care provided in hospitals, the team developed and evaluated a flexible, activity-based drop-in advisory ‘committee’ model, called “Research Rec(reation).” The research compares outcomes of the “standard” community advisory committee, to consultation conducted as part of activity workshops (poetry writing, tea tasting, pottery painting). Research Rec participants were able to attend their choice of workshops providing feedback to the research project during the course of the activities. The two approaches were compared in terms of group dynamics, and engagement of (new) participants.

Outcomes:

Interviews and evaluation surveys were used to assess the experiences of community research participants. Most of the participants in both the Community Advisory Committee (Ottawa) and in Research Rec were white males, and most rated both their physical and mental health as fair or poor. In both settings, most participants felt that the research consultation sessions were productive (rated good or excellent), that they had participated, and that they had enjoyed the sessions. However, the Research Rec model engaged more people and was more successful in attracting input from people who had never given input to a research study before. Eighty percent of those on the Community Advisory Committee had been involved in similar processes before compared to less than half of the participants in Research Rec. This research concluded that activity-based consultations have potential as a useful alternative for engaging marginalized people in research. The project built enthusiasm among Casey House staff for this process of engagement and will be part of the organization’s research strategies going forward including as an approach to engage clients in the Quality Improvement Planning required by the LHIN.

OHTN Support:

This project was supported by a OHTN project grant of $25,000 awarded in December 2013.