Client and family engagement in rehabilitation research: a framework for health care organizations

Abstract

Purpose: To describe the development and implementation of an organizational framework for client and family-centered research.

Method: Case report.

Results: While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada.

Conclusion: It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs.

Implications for rehabilitation

• Family engagement in rehabilitation research

• •Rehabilitation research is crucial to the development and improvement of rehabilitative care.

• •The relevance, appropriateness, and accountability of research to patients, clients and families could be improved.

• •Engaging clients and families as partners in all aspects of the research process is one way to address this problem.

• •In this paper, we describe a framework for engaging clients and families in research at the organizational level.

Keywords:

• Patient engagement
• patient involvement
• participatory research
• knowledge translation

Acknowledgements

The authors would like to thank the dedicated family advisors and staff who sit on the RFEC for their invaluable feedback on this manuscript. Family Leaders: Sharda Ali-Ramjattan, Crystal Chin, Manuela Comito, Susan Cosgrove, Geoffrey Feldman, Suzanne Jorisch, Jan Magee, Marla Munk, Anna Pallotta, Deirdre Sadler, Paul Smith, Holly Yip. BRI Staff: Brydne Edwards, Louise Kinross, Louise Kublick, Katie Mah, Dolly Menna-Dack, Christine Provvidenza, Michelle Stegnar. Special thanks, as well, to Ben Varughese for his assistance with data collection and analysis.

Disclosure statement

The authors report no declarations of interest.