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Co-Authoring and Reporting on Lived Experience Engagement in Mental Health and/or Substance Research: A Qualitative

Natasha Y Sheikhan^1,2, Kerry Kuluski^1,3, Melissa Hiebert²

¹Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Canada.

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy

|March 12, 2025

Abstract

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.

Keywords:

family engagement guideline mental health patient and public involvement patient engagement people with lived experience qualitative research substance use

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