Holland Bloorview Kids Rehabilitation Hospital: Co-designing change through the active engagement of persons with lived experience

Image of two children running in a field
Engaging persons with lived experience

Holland Bloorview Kids Rehabilitation Hospital (hereafter referred to as Holland Bloorview) is a designated Best Practice Spotlight Organization® (BPSO®) in Toronto, Ontario, 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. Family leaders are families and caregivers who have received services at Holland Bloorview, and have lived experiences of paediatric disability. Family leaders’ roles include being a mentor to other families, an advisor to committees and working groups, and faculty who co-teach workshops to students and other families. 

Family leader roles from Holland Bloorview

 Family Leader Roles at Holland Bloorview. Photo provided with permission by Holland Bloorview Kids Rehabilitation Hospital.

The ENFit Working Group is an example of a successful implementation co-design process within Holland Bloorview. The ENFit Working Group is an interprofessional team working on the adoption of a new type of connection on products used for enteral feeding  [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, and thus decrease harm to children and youth who require enteral feeding.

Family partnering graphic

Family Partnering with the EnFit Working Group. Photo provided with permission by Holland Bloorview Kids Rehabilitation Hospital. 

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, great attention was given to the potential impacts on persons and families. The group engaged the family member by:

  • co-creating the implementation plan
  • involving them in a failure mode affects analysis, which highlighted 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.