Youth and family members make meaningful contributions to a randomized-controlled trial: YouthCan IMPACT.

BACKGROUND: There are growing calls to engage service users in research about issues relevant to them. Youth and family members can make meaningful contributions to research projects, improving quality and relevance. However, more information is needed on the contributions that youth and family members can make to various study designs. OBJECTIVE: This paper describes the contributions that youth and family members have made to a multi-site pragmatic randomized-controlled trial, YouthCan IMPACT, and the way project-based engagement learnings accelerated change at the institutional level and beyond. RESULTS: Youth and family members were full members of the project team, including the project's core governance and working groups. They contributed to project leadership, as funding co-applicants and as equal members of the governance team. They were also engaged in study design. Youth defined the primary outcome measure and contributed to decisions on all secondary measures. The service pathway was co-designed with youth and family members; for example, they guided the inclusion of peer support and a family member intervention as core service components. Study implementation contributions included ensuring a youth- and family-friendly research process and training research staff on working with youth and family members. Knowledge translation activities have included youth and family members as co-presenters and manuscript co-authors. The learnings from this trial have been leveraged to expand youth and family engagement at the institution and beyond. CONCLUSIONS: Youth and family members make substantial contributions to complex research projects, including randomized-controlled trials, thereby improving project design, study implementation, associated interventions, and knowledge translation.

Prioritizing core components of successful transitions from child to adult mental health care: a national Delphi survey with youth, caregivers, and health professionals.

Youth accessing mental health care often experience a disruption in care as they attempt to transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). Few studies have evaluated interventions seeking to improve the experience and outcomes of CAMHS-AMHS transitions, in part due to lack of consensus on what constitutes best practices in intervention success. As such, the aim of this study was to engage patients, caregivers, and clinicians to prioritize core components of successful CAMHS-AMHS transitions which can be used in the design or evaluation of transition interventions. As such, a Delphi study was conducted to determine core components of successful CAMHS-AMHS transitions. Guided by the principles of patient-oriented research, three balanced expert panels consisting of youth, caregivers, and clinicians ranked and provided feedback on the importance and feasibility of core components of CAMHS-AMHS transitions. Components endorsed as feasible or important with ≥ 70% agreement from any panel moved to the next round. As a result, a list of 26 core components of CAMHS-AMHS transitions has been refined which can be used in the design, implementation, or evaluation of interventions intended to improve transition experiences and outcomes for youth in mental health care. Youth and families were engaged in an expert advisory role throughout the research process, contributing their important perspectives to the design and implementation of this study, as well as interpretation of the findings.

'It reshaped how I will do research': A qualitative exploration of team members' experiences with youth and family engagement in a randomized controlled trial.

BACKGROUND: Engaging youth and family members as active partners in research and service design offers great promise in improving projects. In youth mental health, recent research has highlighted the value of youth and family engagement. However, research on the experience and impacts of engagement is sparse. OBJECTIVE: This study explores the project team's experience of youth and family engagement in the design and development of the YouthCan IMPACT randomized controlled trial and clinical service pathway design. DESIGN: Qualitative data collected using semi-structured interviews and a focus group as part of the YouthCan IMPACT clinical trial were analysed to understand the impacts of engagement. Twenty-eight team members were interviewed, including youth and family members. A qualitative content analysis was conducted, with a member checking process. RESULTS: Team members reported facilitators, barriers and impacts of youth and family engagement. Facilitators included a safe environment and strong procedures conducive to inclusion in co-design. Barriers included logistical, structural and institutional constraints. Overall, team members found youth and family engagement to be valuable and to positively impact the research and service design process. DISCUSSION AND CONCLUSIONS: Youth and family engagement played a critical role in research and clinical service pathway design. The team found that their involvement improved the quality of the research and service pathway through sustained and multifaceted engagement. Facilitators and barriers to engagement may serve to guide future engagement initiatives. Future research should evaluate the long-term impact of early engagement and further focus on family engagement. PATIENT/PUBLIC CONTRIBUTION: Youth and family members were engaged in the data analysis and interpretation process.

What we know - and want to know - about Family Connections: a review from the perspective of lived experience.

Family Connections is a peer-led education, skills, and support program for family members of individuals with borderline personality disorder. Extant literature on Family Connections is limited but consistent in regard to methodology and outcomes, allowing for meaningful cross-study comparison. Despite evidence across studies regarding the program's efficacy, a number of questions remain to be answered. Three possible future research directions were identified from the perspective of family members with lived experience who are also Family Connections peer leaders; examining Family Connections when led by peers, gathering qualitative data about family member's experiences of Family Connections to illuminate additional program benefits, and studying the efficacy of Family Connections for family members of those with other mental health disorders.

Integrated collaborative care teams to enhance service delivery to youth with mental health and substance use challenges: protocol for a pragmatic randomised controlled trial.

INTRODUCTION: Among youth, the prevalence of mental health and addiction (MHA) disorders is roughly 20%, yet youth are challenged to access evidence-based services in a timely fashion. To address MHA system gaps, this study tests the benefits of an Integrated Collaborative Care Team (ICCT) model for youth with MHA challenges. A rapid, stepped-care approach geared to need in a youth-friendly environment is expected to result in better youth MHA outcomes. Moreover, the ICCT approach is expected to decrease service wait-times, be more youth-friendly and family-friendly, and be more cost-effective, providing substantial public health benefits. METHODS AND ANALYSIS: In partnership with four community agencies, four adolescent psychiatry hospital departments, youth and family members with lived experience of MHA service use, and other stakeholders, we have developed an innovative model of collaborative, community-based service provision involving rapid access to needs-based MHA services. A total of 500 youth presenting for hospital-based, outpatient psychiatric service will be randomised to ICCT services or hospital-based treatment as usual, following a pragmatic randomised controlled trial design. The primary outcome variable will be the youth's functioning, assessed at intake, 6 months and 12 months. Secondary outcomes will include clinical change, youth/family satisfaction and perception of care, empowerment, engagement and the incremental cost-effectiveness ratio (ICER). Intent-to-treat analyses will be used on repeated-measures data, along with cost-effectiveness and cost-utility analyses, to determine intervention effectiveness. ETHICS AND DISSEMINATION: Research Ethics Board approval has been received from the Centre for Addiction and Mental Health, as well as institutional ethical approval from participating community sites. This study will be conducted according to Good Clinical Practice guidelines. Participants will provide informed consent prior to study participation and data confidentiality will be ensured. A data safety monitoring panel will monitor the study. Results will be disseminated through community and peer-reviewed academic channels. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov NCT02836080.