RESEARCH SPOTLIGHT: Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital
In the last decade, advances in childhood disability research have led to new opportunities for children and youth with disabilities and their families. Likewise, many Ontario hospitals have recently adopted patient-centred care models to integrate the family voice in meaningful ways. The leadership of this practice at Holland Bloorview has led to an integrated family engagement program to merge the patient perspective across the hospital and the research institute, and inform best practices. A key element in the success of all research conducted in the Bloorview Research Institute is family engagement.
Informing the research agenda for a healthier, wealthier, smarter future
Patients and families are integrated in all aspects of the research process from idea conception to knowledge translation. A framework was developed to involve clients and families on research teams as co-researchers, in the review of proposals prior to submission for funding, in the development of communication guidelines and as co-presenters at conferences and symposiums. Families also inform the research agenda through participation on the Research Family Engagement Committee (RFEC), which is part of Holland Bloorview’s Family Leadership Program.
“Patients and families can impact the relevance, feasibility and quality of research. They provide a lens that acutely focuses all that we do,” says Dr. Tom Chau, VP of Research at the Bloorview Research Institute. “Clinical research needs to address issues that matter to patients and families. Their engagement in all stages of research ensures that our findings make a difference in the lives of those with a disability.”
The RFEC is a collaborative of patients, families, scientists and researchers who ensure that research is conducted to address patient needs and priorities, across many areas of childhood disability research.
Research that changes lives and impacts behaviour
In 2015, the Concussion Centre in the Bloorview Research Institute launched the Concussion & You handbook as a resource to help children and families manage and recover from concussion.
This handbook was developed and informed by experts in youth concussion and reviewed by the RFEC.
“Family engagement in the development of the handbook was critical to ensure we were delivering a resource that makes a real difference to other families,” says Dr. Nick Reed, Clinician Scientist in the Concussion Centre. “Recovery from concussion can vary and you can prolong recovery by doing too much too soon. The handbook is a guide to helping children and their families get back to what they need, want and love to do at the right time.”
Read the concussion handbook – www.hollandbloorview.ca/concussionhandbook
Leading-edge research across a variety of platforms
Research in the Bloorview Research Institute explores key areas of childhood disability, including:
- Improving outcomes and quality of life for children with autism spectrum disorders;
- Helping the brain achieve peak performance following a brain injury;
- Innovating neuro-developmental treatments for children and youth with cerebral palsy;
- Developing novel technologies to allow children with disabilities to participate meaningfully in arts, music, classroom activities and home-based therapies;
- Promoting healthy weight and lifestyles among children with disabilities;
- Creating new tools to evaluate gross motor skills and interventions to enhance physical activity, communication and functional mobility;
- Enhancing inclusion of children and youth with disabilities in school, community and eventually workplace, focusing on transitions between environments and to adulthood; and,
- Fostering culturally sensitive, client- and family-centred care and strengths-based nursing
Holland Bloorview Kids Rehabilitation Hospital is one of Ontario’s 24 research hospitals that contribute to a healthier, wealthier, smarter province. To learn more about our research, visit http://research.hollandbloorview.ca/BRIHome.
Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog. To learn more about what’s needed to support Ontario’s health research enterprise, download our Policy Platform