Review: Patient engagement in child, adolescent, and youth mental health care research - a scoping review.

BACKGROUND: Youth and children's lived experiences are rarely considered in studies seeking to improve or evaluate their mental health care. We conducted a scoping review to identify approaches to child, adolescent, and youth engagement in mental health studies as well as study-reported barriers, constraints, and facilitators to engagement. METHOD: We systematically searched six electronic databases for literature. We included studies of mental health care service design, development, or evaluation that involved engagement of children, adolescents, and/or youth with mental disorders or who intentionally self-harm. Studies could be of any design as long as patient engagement was used at any point during its design and/or conduct. Engagement could include co-designing health services/interventions and/or participating as a co-researcher. We assessed the reporting of patient engagement using the Guidance for Reporting Involvement of Patients and the Public 2 Long-Form (GRIPP2-LF) checklist and used the Experience Based Co-design (EBCD) framework to guide data extraction and analysis. RESULTS: Sixteen articles were included in the review. Most studies used engagement to develop or adapt a mental health service (75%) and utilized a participatory or co-design approach (69%). Participants were namely adolescents and youth (aged 10-24 years) with some studies including young adults (up to 29 years old). Most studies followed less than 50% of the EBCD framework, and the commonly reported study barriers were related to aspects addressed in EBCD: time restrictions, recruitment, and generalizability. Frequently reported study facilitators included study methodology, youth engagement, and having a diverse participant sample. CONCLUSIONS: Findings from this review suggest that the EBCD framework is not commonly used to guide patient engagement in studies of mental health care services. Future initiatives should consider following the framework to ensure meaningful evaluation and improvements to youth and children's mental health care services.

Co-designing discharge communication interventions for mental health visits to the pediatric emergency department: a mixed-methods study.

BACKGROUND: Discharge communication is essential to convey information regarding the care provided and follow-up plans after a visit to a hospital emergency department (ED), but it can be lacking for visits for pediatric mental health crises. Our objective was to co-design and conduct usability testing of new discharge communication interventions to improve pediatric mental health discharge communication. METHODS: The study was conducted in two phases using experience-based co-design (EBCD). In phase 1 (Sep 2021 to Jan 2022), five meetings were conducted with a team of six parents and two clinicians to co-design new ED discharge communication interventions for pediatric mental health care. Thematic analysis was used to identify patterns in team discussions and participant feedback related to discharge communication improvement and the Capability, Opportunity, Motivation, Behavior (COM-B) model was used to identify strategies to support the delivery of the new interventions. After meeting five, team members completed the Public and Patient Engagement Evaluation Tool (PPEET) to evaluate the co-design experience. In phase 2 (Apr to Jul 2022), intervention usability and satisfaction were evaluated by a new group of parents, youth aged 16-24 years, ED physicians, and nurses (n = 2 of each). Thematic analysis was used to identify usability issues and a validated 5-point Likert survey was used to evaluate user satisfaction. Evaluation results were used by the co-design team to finalize the interventions and delivery strategies. RESULTS: Two discharge communication interventions were created: a brochure for families and clinicians to use during the ED visit, and a text-messaging system for families after the visit. There was high satisfaction with engagement in phase 1 (overall mean PPEET score, 4.5/5). In phase 2, user satisfaction was high (mean clinician score, 4.4/5; mean caregiver/youth score, 4.1/5) with both interventions. Usability feedback included in the final intervention versions included instructions on intervention use and ensuring the text-messaging system activates within 12-24 h of discharge. CONCLUSIONS: The interventions produced by this co-design initiative have the potential to address gaps in current discharge practices. Future testing is required to evaluate the impact on patients, caregivers, and health care system use after the ED visit.

Discharge communication is an important component of an emergency department (ED) visit for a mental health crisis as most children who visit the ED for mental health care are discharged home. To date, patients and their caregivers have not been involved in developing discharge communication interventions for this type of care. Our aim was to involve patients and caregivers to improve the communication provided to children and their caregivers during ED visits for mental health crises. We established a design team made up of six parents and two clinicians to design two new discharge communication interventions: a brochure for families and clinicians to use together during the ED visit, and a text-messaging system to support families after the visit. We tested how useable these interventions were with four other ED health care providers, two parents, and two youth. These participants reported high user satisfaction with the brochure, and usability feedback was used by the design team to improve the final versions of the two interventions. At the end of the project, the design team reported high satisfaction with their engagement experiences with the project. The interventions created by the team have the potential to address knowns gaps in current discharge practices, but future testing is required to evaluate the impact of these interventions on patients, caregivers, and health care system use after the ED visit.