Co‐Authoring and Reporting on Lived Experience Engagement in Mental Health and/or Substance Research: A Qualitative Study and Guidance Document
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...
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| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2025-04-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.70198 |
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| Summary: | 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. |
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| ISSN: | 1369-6513 1369-7625 |