Co-designing change through the active engagement of persons with lived experience - Holland Bloorview Kids Rehabilitation Hospital
Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) is a designated Best Practice Spotlight Organization® (BPSO®) in Toronto, Canada. Holland Bloorview has an award-winning Family Leadership Program (FLP), through which family leaders partner with the organization and the Bloorview Research Institute to co-design, shape and improve services, programs and policies.
These family leaders are families and caregivers who have received services at Holland Bloorview and have lived experiences of paediatric disability. Their roles include mentoring other families, acting as advisors to committees and working groups, and co-teaching workshops to students and other families.
One example of a successful implementation co-design within Holland Broadview is the ENFit™ Working Group. This interprofessional team works on the adoption of a new type of connection on products used for enteral feeding – or feeding directly through the stomach or intestine via a tube. By introducing the ENFit™ system, a best practice safety standard, the working group plans to reduce the risk of disconnecting the feeding tube from other medical tubes. This in turn decreases harm to children and youth who require enteral feeding.
The working group invited a family member and leader whose son had received services at Holland Bloorview. This family member had significant lived experience with enteral feeding management, enteral medication administration, and other complexities associated with enteral products. During the meetings, the potential impacts on persons and families were emphasized. The working group engaged the family member by:
- co-creating the implementation plan
- involving them in a failure mode and effects analysis highlighting the impact of the feeding tube supplies on transitions to home, school and other care settings
- working with the family member to advocate for safe transitions within the provincial pediatric system, which led to the development of the Ontario Pediatric ENFit™ Group
To learn more about Holland Bloorview’s experience in partnering with families in a co-design process, watch their 38-minute webinar: The Power of Family Partnerships
Shared with permission from Holland Bloorview
