Wednesday, August 31, 2016

The 'F-words' in Childhood Disability

In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six 'F-words' that the authors claim should be the focus in childhood disability. They believe, as I do, that we need to move away from the concept of “fixing” disabilities and focus instead on Function, Family, Fitness, Fun, Friends and the Future!

Dr. Rosenbaum discusses the 'F-words' in Childhood Disability below:



The 'F-words' are based on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework.



Building on the ICF framework, the 'F-words' focus on six key areas of child development. Recognizing that no one factor is more important than another, the hope is to encourage people in the childhood disability field to adopt this way of thinking and apply these concepts in their work with children with disabilities and their families.

I wrote about being invited to be a member of the 'F-words' research team HERE.

Since that time, we have been working diligently behind the scenes to create a knowledge hub with tools to help apply the 'F-words' in practice. As an integrated team of families, researchers and clinicians, we are partnering together to promote the uptake of the 'F-words' concepts in the lives of children with disabilities. We are on a Knowledge Translation (KT) journey, finding ways to get our research out there in a user-friendly and accessible way that is relevant and meaningful for youth, families, and health care providers.



We believe that in order to transfer the 'F-words' into practice, researchers, clinicians and families must communicate and work together. We make up an interesting group of experts! While each party brings their own perspective, values, and experiences, there are common goals and overlapping beliefs. This is the power of a collaborative approach!

Earlier this year, I participated in a webinar through CAPHC - the Canadian Association of Paediatric Health Centres. The webinar, titled "The F-words in Childhood Disability: A Call for ACTION - Bringing parents, clinicians and researchers together", was a panel discussion with each representative sharing their unique perspectives on the 'F-words', and strategies for implementing the 'F-words' concepts in practice.

It was an honour for me to sit on a panel with Dr. Rosenbaum and Dr. Gorter, the two founders of CanChild, and individuals for whom I have so much respect and admiration. Their work in the realm of childhood disability has been monumental in changing the way we think about disability, and it will have a continued positive impact on the lives of children and youth with developmental disabilities and their families.

A recording of the webinar is linked below:




As a parent of a child with cerebral palsy, I feel it is important to be involved in research, and I am honoured to be involved in this particular 'F-words' research. I believe that family members can offer a unique perspective. While researchers and clinicians are interested in the topics they study, families like mine live the experiences that they are studying. Any knowledge gained by research can directly affect our lives. Researchers may have in-depth knowledge of both diagnosis and general prognosis of various childhood disabilities, but reading my son's file (as large as it is!) does not give a complete picture of him as a whole person. As his mother, I am able to provide real-life insight on how his diagnosis affects his (and our) day to day life. We are experts on our children, so it is crucial that family voices are heard.



This webinar was "A Call for ACTION", which means that we want people to share these ideas. Parents, if you like the ideas, share them! Share them with your social networks, with your friends, family members and service providers.

The 'F-words' provide a new way of considering the aspects of life that are most meaningful for children with disabilities and their families. Know that when you direct therapy planning to these six words, you are doing what the evidence tells us works best. Focus on your child's strengths, let them enjoy their childhood, and be open to your child doing things in a way that feels most comfortable to them.

The 'F-words' in childhood disability have sparked the interest of a global audience. In a collaboration between CanChild and World CP Day (which is coming up on October 5th!), a wonderful poster was created to illustrate the 'F-words' as they relate to cerebral palsy. The poster shown below can be downloaded HERE.



It is very exciting to see that organizations and health professionals are acknowledging the importance of these 'F-words' concepts and are working on promoting development through child and family strengths. As a parent, I strongly believe in a family-centered approach to child development, and I would love to see these concepts incorporated into every aspect of clinical service, research and advocacy for children with disabilities.

All children have the capacity to succeed. We just need to help them get there!

You can read more about the 'F-words' in Childhood Disability here - https://canchild.ca/en/research-in-practice/f-words-in-childhood-disability


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