Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.
Linda NguyenKinga PozniakSonya StrohmJessica HavensClaire Dawe-McCordDonna ThomsonConnie PuttermanDana ArafehBarb GaluppiAlicia Via-Dufresne LeyShelley DoucetKhush AmariaAdrienne H KovacsAriane MarelliRonen RozenblumJan Willem Gorternull nullPublished in: Research involvement and engagement (2024)
We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.