Engaging families, enhancing research: optimizing rehabilitation research through co-creation of a Family Engagement in Research Framework.

Abstract

Purpose: To describe the systematic revision of a Family Engagement in Research (FER) Framework within a pediatric rehabilitation context.

Method: Revision of the Framework involved: 1. Facilitating co-creation workshops with clients, families, staff, trainees and researchers; 2. Updating the Framework and developing supplementary tools to facilitate Framework use; and 3. Disseminating the updated Framework and accompanying tools.

Results: The revision process resulted in an updated FER Framework at Holland Bloorview Kids Rehabilitation Hospital (HBKRH), which highlights three partnership roles families can play throughout the research process: Family Advisor, Family Partner and/or Lived Experience Educator. Additional products were created, including a guiding principles document, as well as a user guide to facilitate Framework use in practice. Due to the COVID-19 pandemic, a virtual launch was conducted to disseminate the Framework and accompanying tools.

Conclusion: The updated Framework and accompanying tools reflect the current state of the evidence on family engagement in research, in addition to the needs of the families and organizational context at HBKRH. The hope is that other organizations can learn from the steps taken to optimize family engagement in research.