Opening the door: inviting youth and parent perspectives on youth mental health emergency department use

BACKGROUND: Canadian Emergency Departments (EDs) have seen increasing use by children and youth for mental health concerns in recent years. This trend is likely a result of several complex factors, and researcher-posed potential explanations include gaps or access problems in primary care or mental health services, increasing prevalence or awareness of mental disorders and fear of potentially harmful outcomes, or expectations of need for urgent specialist care. Youth, parent, or caregiver perceptions and reasons for increasing mental health ED use may differ, and to date have been underrepresented in informing research directions. We sought to engage with youth and parents or caregivers served by a Canadian tertiary paediatric health centre to: 1) inform research directions for an emerging program of research in child and youth ED use for mental health care; and 2) develop strategies to support ongoing patient engagement in our research. METHODS: Youth and parents were consulted to inform the development of a research engagement strategy. Partnerships with local community agencies facilitated supported engagement with both youth and parents. Group and individual in-person engagement opportunities were offered, as well as opportunities for written submissions and information sharing. RESULTS: Youth and parents identified specific mechanisms to support engagement and for sharing ongoing opportunities and progress, including providing multiple platforms for engagement, offering separate opportunities for youth and parents or caregivers, and minimizing the potential for distress by ensuring appropriate supports and providing alternative opportunities for feedback, including written submissions. They identified lack of timely access to mental health care in primary care and community mental health settings, and accessibility, dependability, and familiarity of the ED as areas for further research. CONCLUSIONS: Strategies to mitigate potential concerns regarding distress, readiness for participation, literacy, and protection of privacy were highlighted as important considerations. Youth and parents were interested in ongoing research engagement through consultation and information sharing. Youth and parents identified areas of interest for research and refined the research team’s proposed research directions by adding contextualizing information. TRIAL REGISTRATION: Not applicable.