For most families, parenting a child with a disability is uncharted territory. While it can be rewarding, the list of responsibilities is long and the daily tasks can seem never-ending. Successfully managing the schedule of appointments, feeding times and medication management, combined with the need to give their child the chance to ‘just be a kid’, can often be overwhelming. It is not unusual for parents in these situations to feel very isolated.
As Sonia, one mother of a son with medical complexity, explains, “Caregivers of children with medical complexity are required to begin a journey in a world that most likely they knew nothing about, didn’t plan for, and quite frankly wouldn’t willingly have chosen, but we do it out of love and responsibility.”
For all parents of a child with a disability –whether they are new to the role or have been doing it for years – peer support and interaction can often be one of their most important social activities.
As Sonia emphasizes, “Speaking to others who can relate to your experience can be uplifting, comparing notes can be helpful, and supporting each other reminds us we are not alone. We get each other.”
There is a lot of literature on the benefits of peer support, but there is little on the specific peer support needs, benefits and best practices for families of medically complex children. To fill this gap, Holland Bloorview’s Evidence to Care (EtC) team led a project to create the Peer Support Best Practice Toolkit. This evidence-based resource was developed for program providers and family leaders interested in designing, delivering, evaluating and sustaining peer support programs for families of children with medical complexity and other lifelong disabilities.
“Recognizing that research is still emerging for this unique population, we sought to bring together different types of ‘evidence’, including a rapid literature review, focus groups to gather expert input and a review of relevant resources,” explains Dr. Shauna Kingsnorth, EtC Lead. “We brought together over 30 experts through a working group of family members and community partners from the childhood disability sector to create the toolkit.”
As Melodie, mother to Matthew, explains, “I can’t stress enough the incredible benefits of peer support –many I never realized I needed until I started going. It reduces the feelings of isolation with mutual understanding; it helps increase practical knowledge through the sharing of experiences and skills, as well as emotional support.”
Now, with the release of the Peer Support Toolkit, providers and families will be equipped to set up much-needed peer support programs and meet the unique needs of families with children with disabilities.
We are grateful to the Government of Ontario and Holland Bloorview Foundation, who both provided financial support for the development of this toolkit.
The toolkit can be downloaded from our website at:
http://www.hollandbloorview.ca/peertoolkit
About the Peer Support Toolkit
The Peer Support Best Practice Toolkit has four components:
- An introduction and background on the toolkit, including an overview of the most common models of support: in-person, online and parent matching
- Case studies that feature current programs in Ontario
- Resources to get you started: FAQ, Tips and Planning and Evaluation tools
- An overview of the key findings from the rapid evidence review
About Evidence to Care at Holland Bloorview
The EtC team at Holland Bloorview was created in 2011 as part of the hospital’s ongoing commitment to transform care through evidence, knowledge generation and translation. Through collaborative efforts, EtC facilitates the identification of the best available research evidence to promote evidence-based care in the field of childhood disability.
