A paper on childhood disability written by McMaster University researchers Peter Rosenbaum and Jan Willem Gorter has sparked renewed public interest in helping children with developmental conditions.
Titled The 'F-words' in childhood disability: I swear this is how we should think!, Rosenbaum and Gorter’s paper features six F-Words they say should be the focus in childhood disability: functioning, family, fitness, fun friends and future.
Rosenbaum and Gorter wrote The F-Words which was inspired by over two decades of CanChild research, a research centre that aims to transform the lives of children, youth and families dealing with developmental conditions. Both researchers are professors of McMaster’s Department of Pediatrics and longtime collaborators at CanChild.
So far, The F-Words has notched up 62,000 downloads, including more than 11,000 this year alone, as well as 470 literary citations. CanChild’s F-Words resource hub has recorded 97,800 unique visitors, 13,200 downloads of F-Words tools and 50,000 views of three key videos.
“The F-Words paper is easy to read and provides six key words that are central to children's health and development,” Gorter said.
“The paper enables clinicians, educators, families, researchers, administrators, policymakers, and anyone involved in the lives of children to view the ‘whole child’ and frame everything we do to their strengths and needs holistically.”
Rosenbaum said the high public interest in The F-Words is partly thanks to its cheeky title.
The F-Words also build on the World Health Organization (WHO)’s International Classification of Functioning, Disability and Health framework, which shows how body structure and function, activity, participation, environmental factors and personal factors are all interconnected and influence personal health.
“This was a whimsical effort on our part to bring the WHO’s ICF framework for health to people’s attention, and we never expected or planned for this kind of response,” Rosenbaum said.
Rosenbaum and Gorter first wrote The F Words, to encourage childhood disability specialists to apply these concepts to their research and advocacy for children and youth with disabilities and their families.
“At a time of rapid technological change in medicine with a focus on the medical diagnosis and novel treatments of the diseases, we are witnessing a sea change in our thinking about 'disability' and child development,” Gorter said.
“The uptake by so many people, worldwide, is an indicator that the ideas in our paper make sense and seem to be helpful to many. That makes me proud.”
Gorter also recalled meeting a mother and her young son with cerebral palsy in the spasticity clinic at McMaster Children’s Hospital and how The F-Words helped her imagine a better life for her child.
“The introduction of The F-Words helped the family to move beyond the medical diagnosis and the idea of fixing the condition to a focus on what matters most to the development of the boy: having fun, friends, and family. I have been fortunate to watch the boy growing up, and becoming a young adult,” Gorter said.
“This story taught me what happens when a family embraces The F-Words’ concepts and starts advocating for a strength-based approach at home, at school and in the community, for themselves and for others. It has transformed their lives.”
With funding from Ontario’s Ministry of Children, Community and Social Services, this year CanChild created five F-Words modules, which will be rolled out across Ontario by early 2023, then across Canada and beyond soon after.
To read The F-Words paper, click here.