Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research

Abstract Background While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, em...

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Bibliographic Details
Main Authors: Linda Nguyen, Kinga Pozniak, Sonya Strohm, Jessica Havens, Claire Dawe-McCord, Donna Thomson, Connie Putterman, Dana Arafeh, Barb Galuppi, Alicia Via-Dufresne Ley, Shelley Doucet, Khush Amaria, Adrienne H. Kovacs, Ariane Marelli, Ronen Rozenblum, Jan Willem Gorter, CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Trial Study Group
Format: Article
Language:English
Published: BMC 2024-02-01
Series:Research Involvement and Engagement
Subjects:
Patient engagement
Patient-oriented research
Patient-centered care
Authentic engagement
Adolescent and young adult
Families or caregivers
Online Access:https://doi.org/10.1186/s40900-024-00543-9

Internet

https://doi.org/10.1186/s40900-024-00543-9

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