Co‐Authoring and Reporting on Lived Experience Engagement in Mental Health and/or Substance Research

A Qualitative Study and Guidance Document

Bibliographic Data

ID19507002
AuthorsNatasha Y Sheikhan (0000-0002-0471-4735, Institute of Health Policy, Management, and Evaluation University of Toronto Toronto Canada, corresponding author), Kerry Kuluski (0000-0002-6377-6653, Institute of Health Policy, Management, and Evaluation University of Toronto Toronto Canada), Melissa Hiebert (0009-0000-3493-642X, Centre for Addiction and Mental Health Toronto Canada), Charlotte Munro (0000-0003-1911-7586, Centre for Addiction and Mental Health Toronto Canada), Vivien Cappe (Centre for Addiction and Mental Health Toronto Canada), Mary Rose Van Kesteren (Centre for Addiction and Mental Health Toronto Canada), Sean A Kidd (0000-0002-2435-786X, Centre for Addiction and Mental Health), Sean Kidd (Centre for Addiction and Mental Health Toronto Canada), Lisa D Hawke (0000-0003-1108-9453, Centre for Addiction and Mental Health Toronto Canada)
Year2025
Volume28
Issue2
Pagese70198-e70198
Publication date2025-04-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.70198
PMID40072279
OpenAlexW4408364931
LanguageEN
Citations received7
References cited36

INTRODUCTION: There is a move towards engaging people with lived experience and families (PWLE/F)-also referred to as PWLE/F engagement-in mental health and/or substance use research. However, PWLE/F engagement is inadequately reported on in mental health and/or substance use research papers. OBJECTIVE: To understand what PWLE/F and researchers perceive are important components to report on related to engagement in mental health and/or substance use research. METHODS: This study included a qualitative description study underpinned by pragmatism. Data were collected through virtual interviews with 13 PWLE/F and 12 researchers across Canada and analysed using template analysis. The results were used to develop a reporting guidance document for engagement in mental health and/or substance use research. RESULTS: The results from the template analysis were structured through the following themes: (1) establishing the need for a guidance document; (2) aspects of engagement to report and reflect on; (3) guidance around co-authorship with PWLE/F; (4) practical tips for reporting on engagement and (5) considerations for journals. Participants identified a need for tailored guidance that is flexible and reflective, yet can promote transparency, accountability and learning in the field. A reporting guidance document was developed for engagement in mental health and/or substance use research that balances flexibility and standardisation while incorporating reflection into reporting. Guidance around co-authorship with PWLE/F partners was also included. CONCLUSION: The guidance document is intended to be used as a roadmap to help guide authors to meaningfully write about engagement without the rigid boundaries of a reporting guideline. We encourage research teams that engage PWLE/F in mental health and/or substance use research to consider using the guidance document as they write up their work. PATIENT AND PUBLIC INVOLVEMENT: PWLE/F members were engaged throughout the study from conception to manuscript production. This included a PWLE partner on the doctoral committee and a Lived Experience Advisory Group consisting of two PWLE and one family partner

Accountability · Medical education · Mental health · Political science · Psychiatry · Psychotherapist · Qualitative research · Sociology · Substance use · Applied Psychology · Computer Science · Family Caregiving in Mental Illness · Health Policy Implementation Science · Medicine · Mental Health and Patient Involvement · Psychology