ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Tools and Resources for Engaging People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Research: Findings From a Survey and Community Consultation Events.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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Who cites it
1 citing paper in PubMed.
- Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026Article
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Authors and funding
14 authors.
Funding
Abstract
backgroundThere is increasing recognition of the value of engaging people with lived and living experience and caregivers in mental health and substance use health research, in roles such as advisors, collaborators, and co-researchers. While tools and resources are required to support teams in conducting authentic engagement, it is unclear what is most needed by academic researchers and those with lived/living experience. This study aimed to identify the tools and resources most needed by academic researchers, people with lived/living experience, and caregivers to support engagement and to co-design a sample of tools.
methodsWe conducted an online survey with 46 people with lived/living experience and caregivers and 46 academic researchers with engagement experience to identify what tools and resources were available and still needed to support engagement in research. We then held two consultations with 55 of the survey participants (38 lived/living experience and caregiver participants, 17 researcher participants). At the consultations, participants discussed the most highly needed tools to be co-developed. We then conducted a co-design phase of the project.
resultsWhile a wide variety of tools and resources are available to people with lived and living experience and academic researchers, many people do not have access to tools and resources that they would consider useful. Participants gave shape to five potential tools and resources. A Lived/Living Experience and Caregiver Working Group then co-developed three tools-two meeting checklists and a career development tip sheet, which are provided in the Appendices.
conclusionsA wide variety of tools and resources may be helpful to support engagement. Research teams might consider reviewing the tools and resources that they have, sharing them with the broader engagement community, and seeking those potentially useful items that they would like to have but have not yet accessed. Future work is required to collect the tools available and offer them systematically to the engagement community for more effective lived/living experience and caregiver engagement in mental health and substance use health research. PATIENT AND PUBLIC CONTRIBUTION: All stages of this study were guided by a Lived/Living Experience and Caregiver Working Group, from grant development to manuscript co-authorship.
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Registered trials
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