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

Autor: 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

Publikováno v: Research Involvement and Engagement, Vol 10, Iss 1, Pp 1-13 (2024)

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™

Externí odkaz: https://doaj.org/article/db96c7c5cd7f43c78cabb1306870b25d

CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth

Autor: Shelley Doucet, Sarah Gander, Lehana Thabane, Sarah Zaidi, Andrew Mackie, Roger Stoddard, Myla E Moretti, Rima Azar, Jan Willem Gorter, Lonnie Zwaigenbaum, Wendy J Ungar, Khush Amaria, Adrienne Kovacs, Ronen Rozenblum, Barbara Galuppi, Linda Nguyen, Sonya Strohm, Nadilein Mahlberg, Alicia Via-Dufresne Ley, Ariane Marelli, Donna Thomson, JoAnne Mosel, Connie Putterman, Kinga Pozniak, Nathan Tasker, Julia Hanes, Kyle Chambers, Jessica Havens, Claire Dawe-McCord, Dana Arafeh, Hana Alazem, John Andersen, Kerry Boyd, Caitlin Cassidy, Jamie Churchill, CJ Curran, Anne Fournier, Anna McCormick, Ronit Mesterman, Maryam Oskoui, Janet Rennick, Jordan Sheriko, Kathy Speechley, Kelly Wynne, Fabiola Breault, Yomna Elshamy, Rocio Gutierrez, Hashaam Hasan, Rhiannon Hicks, André Pépin, Rochelle Sorzano, Jennifer Zwicker

Publikováno v: BMJ Open, Vol 11, Iss 3 (2021)

Introduction Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM

Externí odkaz: https://doaj.org/article/6b52f0c1ddb14211be9cee5f02463067

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Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.

Autor: Marelli A; McGill Adult Unit for Congenital Heart Disease Excellence, McGill University Health Centre, Montreal, QC, Canada.; Cardiovascular Health Across the Lifespan Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada., Rozenblum R; Brigham and Women's Hospital and Harvard Medical School, Boston, MA, United States., Bolster-Foucault C; Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada., Via-Dufresne Ley A; Cardiovascular Health Across the Lifespan Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada., Maynard N; Department of Medicine, McGill University, Montreal, QC, Canada., Amaria K; Department of Psychology, Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada., Galuppi B; Department of Pediatrics, McMaster University, Hamilton, ON, Canada., Strohm S; Department of Pediatrics, McMaster University, Hamilton, ON, Canada., Nguyen L; CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada., Dawe-McCord C; Cumming School of Medicine, University of Calgary, Calgary, AB, Canada., Putterman C; Centre for Addition and Mental Health, McMaster University, Hamilton, ON, Canada., Kovacs AH; Equilibria Psychological Health, Toronto, ON, Canada., Gorter JW; Department of Pediatrics, McMaster University, Hamilton, ON, Canada.; CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.

Publikováno v: JMIR pediatrics and parenting [JMIR Pediatr Parent] 2024 Oct 01; Vol. 7, pp. e51606. Date of Electronic Publication: 2024 Oct 01.