Dear CanChild,

Welcome to the April 6th edition of CanChild Today! In this newsletter, we highlight an award, two media features, the PREP intervention, research opportunities, and summaries of recent publications.

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2023 EKO Tribute Award for Partnership!

Congratulations to Rachel Teplicky who is the recipient of the 2023 Empowered Kids Ontario Tribute Award for Partnership!

"She has been an invaluable resource from her many roles with CanChild for years, well-known as a collaborative colleague who helps people everywhere to develop their child disability activities."

Dr. Linda Nguyen was interviewed for an article in Chatelaine magazine about the need for supports for sibling caregivers.

She refers to a 2021 study, Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis, which was part of her PhD studies at CanChild and the School of Rehabilitation Science at McMaster University.

“Many of the participants in studies that have talked about transition have really described it as falling off a cliff,” said Dr. Laura Brunton, an assistant professor at Western’s School of Physical Therapy and CanChild Scientist.

“I want to make sure that there’s something there to catch these kids when they fall off that cliff of paediatric care to adult care. The reason I think it has taken such a long time for this to exist is because there hasn’t been people who are interested and qualified to treat these individuals once they turn 18.”

This study was funded by the Canadian Institutes of Health Research (CIHR).

The Pathways and Resources for Engagement and Participation (PREP) is an evidence-based intervention that focuses on enhancing participation through modifying the environment.

Testimonials:

“It was really motivating and encouraging, and it helped increase my self-esteem.” 

“Participating reassured me that this is something I am able to do.” 

“I definitely recommend to other teens."

Computer Based Instrument for Low Motor LanguageTesting (C-BiLLT)

We are interested in your perceptions about the barriers and facilitators to using the C-BiLLT in Canadian clinics and with Canadian children who have CP. Focus groups will be virtual and will be approximately 2 hours.

Please contact Sarah Hopman: hopmansn@mcmaster.ca

COVID Time Capsule

Inviting families with children between 8-21 who have a disability: We want to hear about your experiences during COVID and your ideas about what services and supports families need moving forward.

Please contact

Anna Swain: minchena@mcmaster.ca

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review

This scoping review aimed to identify and map the characteristics and outcomes of programs that prepare siblings for their future roles with their sibling with a neurodevelopmental disability. Fifty-eight articles (published between 1975 and 2020, with > 50% published since 2010) were included. Existing programs for siblings provided information on neurodevelopmental opportunities and empowered siblings to learn skills on how to enhance the interaction with their sibling with a neurodevelopmental disability. Programs also created a community for siblings to connect to each other and connected siblings to resources and services to support them in their roles. While there is an increasing number of sibling programs being provided, siblings are often not included as program developers or facilitators. Future research should consider how siblings can be involved in different roles with programs to address their needs. 

Authors: Linda Nguyen, Jael Bootsma, Marjolijn Ketelaar, Briano Di Rezze, Susan M. Jack, and Jan Willem Gorter

Functional Neuroplasticity and Motor Skill Change Following Gross Motor Interventions for Children With Diplegic Cerebral Palsy

The objective of the study was to identify relationships between functional neuroplasticity and motor skill changes following gross motor interventions for children with diplegic cerebral palsy (DCP). There were 17 participants with DCP who completed a 6-week gross motor intervention program. Their motor skills were assessed using an active ankle dorsiflexion task. The assessment was done before the intervention, and then again after the intervention and at 4 and 6-months follow-up. Scores improved after the intervention and were maintained at follow-up. Further investigation of patterns of neuroplastic change will improve our understanding of effects.

Authors: Alicia J Hilderley, F. Virginia Wright, Margot J. Taylor, Joyce L. Chen, and Darcy Fehlings