Perspectives and Experiences with Engaging Youth and Families in Research.
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.
['Nguyen|Tram|T|', 'Palisano|Robert J|RJ|', 'Graham|Ian|I|']
D000293:Adolescent D000328:Adult D035843:Biomedical Research D019988:Disabled Children D005190:Family D005260:Female D006801:Humans D008297:Male D000073597:Stakeholder Participation
youth with disabilities stakeholder engagement Frameworks integrated knowledge translation participation in research patient engagement in research (PIER) stakeholder involvement in research theoretical models