Perspectives and Experiences with Engaging Youth and Families in Research

Physical & Occupational Therapy in Pediatrics
Tram NguyenIan Graham

Abstract

Engaging youth with disabilities and families in research is critical in facilitating knowledge utilization to impact processes and outcomes of services and interventions. Organizations such as INVOLVE in the United Kingdom, the Canadian Institutes of Health Research and the Patient-Centered Outcomes Research Institute in the United States advocate for engaging stakeholders in all aspects of the research process. Despite these efforts, there is a need for research to identify best practices and approaches for stakeholder engagement in research as current descriptions around processes are lacking. In this perspective paper, we share our insights and experiences with engaging youth with disabilities and families as members of the research team. We offer considerations and strategies for stakeholder engagement, as well as identify relevant frameworks to facilitate stakeholder engagement in research. We encourage researchers to share and document their experiences with stakeholder engagement in research to provide guidance for others with shared interests. We hope this paper will initiate conversations among researchers about best practices to maximize the full potential of stakeholders' time and input.

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Citations

Jan 31, 2020·Disability and Rehabilitation·Miriam GonzalezKeiko Shikako-Thomas
Aug 23, 2020·International Journal of Environmental Research and Public Health·Theresia KriegerElisabeth Dorant
Jan 23, 2021·Developmental Medicine and Child Neurology·Tatiana OgourtsovaAnnette Majnemer
May 25, 2021·Developmental Medicine and Child Neurology·Tatiana OgourtsovaAnnette Majnemer
Nov 3, 2021·Early Intervention in Psychiatry·Joanna HendersonLisa D Hawke

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