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.

Many participants with lived/living experience, caregivers, and academic researchers lacked access to tools and resources they would find useful for supporting engagement in research.

• The study surveyed 46 people with lived/living experience and caregivers and 46 academic researchers with engagement experience
• Participants reported that while a wide variety of tools and resources exist, access to useful tools remained a gap
• Both researcher and lived/living experience participant groups identified unmet needs for specific tools and resources

Survey participants and consultation attendees identified five potential tools and resources as most highly needed to support engagement.

• Two consultation events were held with 55 of the survey participants (38 lived/living experience and caregiver participants, 17 researcher participants)
• At consultations, participants discussed and prioritized the most highly needed tools to be co-developed
• Five potential tools and resources were given shape during the consultation phase
• From these five, three tools were ultimately co-developed: two meeting checklists and a career development tip sheet

A Lived/Living Experience and Caregiver Working Group co-developed three tools: two meeting checklists and a career development tip sheet.

• The co-design phase followed the survey and consultation phases of the project
• The three co-developed tools are provided in the appendices of the paper
• The Lived/Living Experience and Caregiver Working Group guided all stages of the study, from grant development to manuscript co-authorship

The study used a multi-stage participatory research design involving an online survey, community consultation events, and a co-design phase.

• Stage 1 involved an online survey with 92 total participants (46 lived/living experience and caregivers, 46 academic researchers)
• Stage 2 consisted of two consultation events with 55 survey participants
• Stage 3 was a co-design phase in which tools were developed
• All stages were guided by a Lived/Living Experience and Caregiver Working Group

There is increasing recognition of the value of engaging people with lived and living experience and caregivers in mental health and substance use research in roles such as advisors, collaborators, and co-researchers.

• The paper identifies that tools and resources are required to support teams in conducting authentic engagement
• It was unclear prior to this study what tools and resources were most needed by academic researchers and those with lived/living experience
• The study aimed to identify the most needed tools and resources and to co-design a sample of them

Future work is required to systematically collect and offer available engagement tools to the broader engagement community.

• The authors recommend that research teams review the tools and resources they have and share them with the broader engagement community
• Teams are encouraged to seek potentially useful items they would like to have but have not yet accessed
• Systematic collection and dissemination of tools is identified as needed for more effective lived/living experience and caregiver engagement in mental health and substance use health research