Perspectives and Experiences with Engaging Youth and Families in Research

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.

Keywords:

• Frameworks
• integrated knowledge translation
• participation in research
• patient engagement in research (PIER)
• stakeholder engagement
• stakeholder involvement in research
• theoretical models
• youth with disabilities

Acknowledgments

The authors would like to thank the youth and families that participated in our studies. In particular the parents who participated in the On-Track study.

Disclosure statement

The authors declare that they have no competing interests.

Additional information

Funding

TN holds a postdoctoral fellowship from the Canadian Institutes of Health Research (2016–2019). IDG is a CIHR Foundation Grant recipient (FDN #143237).