Less social activity starts early in children with cerebral palsy
By Louise Kinross
Preschoolers typically blossom outside home as they meet new kids and adults and try activities for the first time.
But young children with cerebral palsy only participated in the community a few times in the last four months, according to a new study in Developmental Medicine and Child Neurology.
The study looked at how often 155 Ontario children with cerebral palsy participated at home and in the community during two time periods: first when they were just over four years old, and then a couple of years later when they entered school.
“Participation is important as it is one of the building blocks of a child’s sense of self,” says lead author Daniela Testani, a PhD student in rehab sciences at Holland Bloorview. “You’re defining yourself as a person and learning how to interact with people and things around you, and that can look different for every child,” Testani says. “It is a combination of how often kids show up, and if they are enjoying themselves."
In the community, participation could be having play dates or swimming lessons or going to a movie. At home it might be reading a book with a parent, playing with a sibling, or helping with chores.
While preschoolers on average in the study only had a few community experiences over four months, they participated at home on a weekly basis.
Low participation outside the home persisted once children entered school, the researchers found.
Children with higher prosocial behaviour at a young age—including sharing, helping others and making friends—were more likely to be active in the community at school age.
The study did not find physical ability, including hand dexterity, pain levels or family income or ethnicity were factors in school-age community participation.
Testani says higher participation in the school-age years could be associated with being more social at a young age. "Families should explore early intervention programs that encourage socialization to better support community participation as their child ages," she says.
However, parents of a newly diagnosed child may be overwhelmed with their health and developmental needs and need support to find inclusive activities.
Clinicians need to “think about the child's interests and how families can think of solutions to overcome some of the barriers to participation," she says. "But it’s not all about putting the onus on the family. We need to improve access to programming as a whole, and make sure we’re pointing families in the right direction.”
Community programs need to use accessible language and images in their promotional material, so families understand their child belongs, “and we need to teach instructors, coaches and recreation programmers about inclusive play and diversifying their programs,” Testani says. “If a kid comes in with different needs, staff need to know how to adapt programs, and have the resources to do so, on the spot.”
Testani worked at the City of Toronto as a camp counsellor and coordinator and got interested in pediatric disability research while volunteering here as an undergrad.
“I volunteered on the brain injury and SODR units for six months, and that honestly changed my perspective on what it means to have a safe space for children and families to come and learn and play. I would come visit Holland Bloorview every Wednesday feeling tired and discouraged from school. And I’d leave a few hours later feeling invigorated and inspired. Being able to see all the amazing things Holland Bloorview does to adapt activities was exciting to me, and I knew if I did any sort of research it would be in this area.”
Testani is in the fourth year of her PhD at Holland Bloorview. “My supervisor, Dr. Darcy Fehlings, is an inspiring mentor,” she says. “She leads with kindness and she’s brilliant. It’s been a privilege to learn from her. Everyone I’ve interacted with at Holland Bloorview is solution-focused and pragmatic and willing to collaborate to work around barriers to improve recreation and care."
The study on community participation is part of Testani's dissertation and recruited participants through the CP-NET Clinical Database. A follow-up study will look at community participation changes following a solution-focused coaching program with a trained occupational therapist. The occupational therapist will work with families to identify participation goals that matter to them, and to support their child's involvement.
Testani says that previous studies looked at participation in older children with cerebral palsy, but didn’t explore this in the preschool age. Testani hopes in the future to work in health care in the areas of disability and accessibility.
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