Lived experiences of participation in mental health research in Canada: breaking the glass wall

Abstract

Research participants are crucial to the entire research enterprise, but they are still predominantly conceived as mostly passive, ‘silent’ partners in the field of research ethics. Participants generally have very limited opportunities to share their lived experiences of participation in research and their views about the ethics of research. This gap is particularly concerning for research participants whose agency is already undermined by unjust social structures, such as individuals living with mental illness. Our study investigates the perspectives on research of mental health research participants and mental health advocates in Canada. We found that many participants had positive experiences of participation in research and valued their experience. The positive impacts of research participation, however, depend the willingness of researchers to actively create an accessible and respectful research environment.

Points of interest

• People with mental illness who participate in research projects do not often get to talk about their experiences. We think that this is a mistake and that researchers should learn from them.

• We interviewed 14 research participants and individuals who work to defend the rights of people with mental illness.

• The research participants said that participating in research had made them feel good. It made them feel respected, valued, and listened to.

• Participants do not want to feel like “things” or “objects” behind a glass wall. They want to be treated as equals.

• This research is important because it shows that participating in research can be a positive experience for people with mental illness.

Keywords:

• Mental health research
• research ethics
• lived experience
• mental illness
• research participation

Acknowledgements

We thank our participants for their willingness to share their experiences with us and help make us better researchers. A warm thank you, also, to the members of the Pragmatic Health Ethics Research Unit for feedback on earlier drafts of this paper.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Canadian Institutes of Health Research under Grant 9798; and the Fonds de recheche du Québec under Grant #30998.