‘I will play this tokenistic game, I just want something useful for my community’: experiences of and resistance to harms of peer research

ABSTRACT

Hiring peer researchers – individuals with lived experience of the phenomenon under study – is an increasingly popular practice. However, little research has examined experiences of peer research from the perspectives of peer researchers themselves. In this paper, we report on data from a participatory, qualitative research project focused on four intersecting communities often engaged in peer research: mental health service user/consumer/survivor; people who use drugs; racialized; and trans/non-binary communities. In total, 34 individuals who had worked as peer researchers participated in semi-structured interviews. Transcripts and interviewer reflections were analyzed using a participatory approach. Many participants reported exposure to intersecting forms of systemic oppression (racism, transphobia, ableism, and classism, among others) and disparagement of their identities and lived experiences, both from other members of the research team and from the broader institutions in which they were working. Peer researchers described being required to perform academic professionalism, while simultaneously representing communities that were explicitly or implicitly denigrated in the course of their work. Practices of resistance to these harms were evident throughout the interviews, and participants often made strategic decisions to permit themselves to be tokenized, out of the expectation of promised benefits to their communities. However, additional harms were often experienced when these benefits were not realized. These findings point towards the need for a more reflexive and critical approach to the use of peer research.

KEYWORDS:

• Participatory research
• peer research
• qualitative research
• inclusion

Acknowledgements

We wish to acknowledge the essential contributions of PEERS project staff and participants to this manuscript. Stella Schneckenburger provided administrative support in the preparation of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This manuscript draws on research supported by the Social Sciences and Humanities Research Council of Canada.