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

Joanna Henderson, Lynn Courey, Jacqueline Relihan, Karleigh Darnay, Peter Szatmari, Kristin Cleverley, Amy Cheung, Lisa D Hawke, Joanna Henderson, Lynn Courey, Jacqueline Relihan, Karleigh Darnay, Peter Szatmari, Kristin Cleverley, Amy Cheung, Lisa D Hawke

Abstract

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.

Keywords: engagement; family members; patient-oriented research; randomized-controlled trial; youth.

Conflict of interest statement

The authors declare no conflict of interest.

© 2021 The Authors. Early Intervention in Psychiatry published by John Wiley & Sons Australia, Ltd.

Figures

FIGURE 1
FIGURE 1
Youth‐generated values underpinning the YouthCan IMPACT project

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