Experiences of participation in a longitudinal cohort study of people who inject drugs in Victoria, Australia

Aim: Longitudinal cohort studies are important for understanding the social and health trajectories of people who inject drugs. Little research exists, however, about the motivations, challenges, and experiences of participation in these studies. Methods: To address this gap, we conducted in-depth interviews with participants of an open-ended natural history longitudinal cohort study (SuperMIX) and with fieldworkers who collect the data for this study. Interviews were audio-recorded, and data analyzed thematically. Results: Research findings revealed several motivating factors that encouraged participants to get involved in and stay in the study including financial reimbursement and the opportunity to contribute to a study aiming to improve the lives of peers. Many participants discussed their appreciation of the kindness and respect they were afforded by fieldworkers, and the advocacy role fieldworkers had undertaken with them. While some participants described challenges responding to some questions, there were also expressions of finding the experience therapeutic. Conclusion: Findings provide learnings for future studies and highlight how participation in longitudinal cohort research can provide an opportunity for on-going engagement that affords participants not only a chance to share their experiences, but to contribute to knowledge production and achieve clarity about their own experience.