Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.

Authors

Lisa D Hawke, Abigail Amartey, Joshua Dunphy, Hajar Seiyad, Joshua Orson, Shelby McKee, Terri Rodak

Published in

Health expectations : an international journal of public participation in health care and health policy. Volume 29. Issue 4. Pages e70733.

Abstract

Partnering with people with lived experience of the mental health or substance use spectrum and caregivers is a growing priority in research. There is an emerging meta-research literature on the science of engagement, but this has not been synthesised.
This scoping review synthesises the meta-research on the science of lived experience and caregiver engagement in mental health and substance use health research.
We conducted systematic searches in PsycInfo (Ovid), MEDLINE (Ovid), CINAHL (EBSCO), and Web of Science. Articles were eligible if they presented original meta-research on lived experience/caregiver engagement in mental health and substance use health research in the past 10 years. Titles and abstracts, then full texts, were reviewed by two independent reviewers. Data were extracted into a spreadsheet and synthesised qualitatively.
Fifty-seven articles were included. The meta-research has aimed to understand experiences or needs in engagement contexts, describe or evaluate engagement groups, or develop or evaluate tools and resources to support engagement. The literature reports on positive experiences and challenges, describes approaches and new tools, and highlights opportunities for increased engagement. Papers point to the importance of improving engagement processes, structural supports and logistics.
A growing body of meta-research on the science of lived experience and caregiver engagement in mental health and substance use health research remains largely descriptive in nature, rather than analytical. Research teams are encouraged to seek solutions to identified challenges and key areas of development in engagement processes, structural supports and logistics. Addressing these aspects will further advance the meta-research evidence base.
This review was conducted together with people with lived experience, including co-authorship.

PMID:
42374970
Bibliographic data and abstract were imported from PubMed on 30 Jun 2026.

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