Abstract
Background: Mental health is an essential component of overall health across the life course that should be integrated into research, policy, and practice for sustainable health and well-being. However, in Canada, research and care provision related to aging, mental health and physical health are often siloed. There is a need for intentional partnerships with experts-by-experience to collaboratively generate a meaningful aging and mental health research agenda based on a shared vision for and values around integrated care.
Approach: This project engaged experts-by-experience, including older adults, family and friend caregivers, and health and social care providers to identify priority research questions on aging and mental health in Canada. A modified James Lind Alliance priority-setting partnership approach was used, with guidance from a diverse steering group of experts-by-experience. Collaborative solution-building with the working group included identifying approaches to diverse recruitment and ensuring authentic and meaningful engagement during the transition to online activities during the COVID-19 pandemic. Consultation methods included two pan-Canadian surveys and four pan-Canadian online workshops. Consensus-building was guided by qualitative and quantitative data analysis, a rapid review of recent evidence, and a nominal group technique.
Results: Survey 1 (n=305) was open-ended and led to the identification by Canadians of 42 unique questions about aging and mental health. Twenty-five questions were determined to be unanswered (partially or completely) through a rapid review of recent evidence. The second pan-Canadian survey (n=703) prioritized a short list of 18 unanswered questions, which were carried forward into a series of 4 online workshops (n=52). In perspective-specific and mixed-perspective workshops, older adults, caregivers, and health and social care providers from across Canada came together to select the top 10 unanswered questions through individual reflection and ranking, sharing of stories, small and large group discussion, and voting. The top 10 unanswered questions incorporate topics around skill-building and burnout of providers, experiences of social isolation and loneliness, access to services specifically for older adults, and support of caregivers and their integration in care decision-making.
Identification of the priority research questions has led to the publication of an open access research paper and two projects involving essential collaborative partnerships with experts-by-experience across Canada. First, the Canadian Aging Action, Research, and Education (CAARE) for Mental Health Group formed to mobilize the questions and continue building research partnerships with experts-by-experience representing diverse perspectives. Second is a research project to address the top unanswered question by co-designing evidence-informed mental health conversations and integrating these at the point of care in home and community settings across Canada.
Implications: This work demonstrates the value of engaging experts-by-experience in meaningful collaborative partnerships to guide future research aiming to realize more effective and sustainable integration of mental and physical health care. The questions identified can guide researchers, funders, and organizations in shaping future inquiry and action that reflect the shared values and priorities of aging Canadians. They can also suggest key areas of focus for international settings, which can be verified and investigated with context-relevant experts-by-experience.