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

Abstract

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.

Keywords:

• People who inject drugs
• longitudinal cohort studies
• research participation
• quantitative research methods

Acknowledgements

The authors gratefully acknowledge the support of the Victorian Operational Infrastructure Fund to the Burnet Institute. The funders had no input into the work. We would like to acknowledge the contribution of the SuperMIX participants, the Burnet Institute fieldwork team and supporting community services and organizations. We would also like to thank the broader Burnet Institute fieldwork team and supporting community services and organizations, who have been involved in study implementation.

Disclosure statement

PD has received an investigator-driven grant from Gilead Sciences for unrelated work on hepatitis C and an untied educational grant from Reckitt Benckiser for unrelated work on the introduction of buprenorphine-naloxone into Australia. He has served as an unpaid member on an Advisory Board for an intranasal naloxone product. PH has received investigator-driven research funding from Gilead Sciences and Abbvie for work on hepatitis C unrelated to this work. All other authors have nothing to declare.

Additional information

Funding

The SuperMIX study is funded by the Colonial Foundation Trust and the National Health and Medical Research Council [#545891, #1126090]. The Burnet Institute receives funding from the Victorian Government Operational Infrastructure Support Program.