Greetings!
Welcome to the May 20th edition of CanChild Today! We are excited to share research updates and publications by some of our members.
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New Webpage about CP Study!
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Multimorbidity Risk Assessment and Prevention through health-promoting behaviours in adolescents and adults with cerebral palsy
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Dr. Jan Willem Gorter and Dr. Patrick McPhee, along with an international team of clinicians and researchers, received funding from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to develop and test a core outcome set of measures to understand and prevent multimorbidity risk in adolescents and adults with Cerebral Palsy (CP).
This project generated significant findings about the value and importance of measuring multimorbidity risk in adolescents and adults with CP in clinical research settings. Performing the core outcome set that includes measures that often are not part of routine clinical care can help screen for cardiometabolic and multimorbidity risk, and lead to referral to clinical specialists if required.
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Client and Family Engagement in Research can be challenging.
Let’s Learn Together How to Support Each Other!
Participate in a Research Study to Test the Effectiveness of a Simulation-Based Training Workshop to Understand How to Support Clients and Family Engagement in Research.
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Researchers from the Holland Bloorview Kids Rehabilitation Hospital are seeking
researchers, trainees, and clients and families living with childhood disability or acquired injury to help test a simulation-based training workshop for research teams and clients and families to learn how to support each other through challenging situations associated with client and family engagement in research. This study involves working in groups of eight to ten for two, 2-hour online workshops, completing an online survey both and after the training, and participating in an online focus group. Please note that this study is recruiting individuals from Canada only.
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Celebrate the Art of Sibling Science!
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Clockwise from top left: Samantha Bellefeuille, Linda Nguyen, Jessica Havens, and Hanae Davis.
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The Sibling Youth Advisory Council (SibYAC) was established as a research partner in the doctoral studies of CHILD-BRIGHT READYorNot™ Project Graduate Trainee and Research Assistant Linda Nguyen.
In April 2021, the SibYAC presented their experiences about their roles as siblings at home, careers, mental health and research, including the BEST SIBS Study, at Luke’s Legacy Family Research Rounds. They celebrated their partnership in this initiative with a virtual social dinner.
To learn more about SibYAC or the BEST SIBS study, please contact Linda Nguyen at NGUYEL7@mcmaster.ca.
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Recent Publications by CanChild Members!
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Towards a paradigm shift in pediatric rehabilitation: Accelerating the uptake of evidence on participation into routine clinical practice
This paper is part of a new international initiative called LEAP (Leading Evidence to Advance Participation-focused practice) that aims to address pressing knowledge-to-practice gaps surrounding the topic of participation. It offers a structured Participation-focused Knowledge Translation roadmap (P-KT) to guide all stakeholders interested in fostering a shift in practice. Specifically, a collaborative multi-level P-KT framework involving a ‘"family-clinician-manager-community leader-policymaker" synergy is presented. Eight guiding principles for enabling the uptake of participation-focused tools (e.g., assessments, interventions) as well as a range of examples of solutions-based strategies for implementation are introduced. Authors: Anaby D, Khetani M, Piskur B, van der Holst M, Bedell G, Schakel F, de Kloet A, Simeonsson R, Imms C. Disabil Rehabil. 2021 Apr 8:1-12. doi: 10.1080/09638288.2021.1903102.
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To enhance function, promote children’s development
Traditionally, approaches in developmental disability focus on changing the children's body structure and function, with the expectation that these changes will lead to better activity and participation. However, this editorial presents an alternate approach to intervention—encouraging children to use whatever ability they have, even though they do not perform things nicely and normally, to promote developmental progress. Research provides evidence that shows the impact on development when children are empowered. Striving to promote developmental progress using the best biomedical, therapeutic, and technical resources is as important as providing opportunities for children to explore their natural developmental drive. Author: Rosenbaum, P. Dev Med Child Neurol. 2021 Jun;63(6):628. doi: 10.1111/dmcn.14838.
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Sleep problems in children with cerebral palsy and their parents
Children with cerebral palsy (CP) have a spectrum of sleep problems, including difficulty falling asleep and waking up early in the morning. They are also more likely to experience sleep disruptions (e.g., night-time waking and bed discomfort) compared to typically developing children. In addition, a large group of parents and especially those with non-ambulatory children reported poor sleep quality. Aside from affecting parental sleep, children's night-time care requirements and sleep problems are also associated with psychological exhaustion and decreased well-being among parents. Given the impact of sleep problems on children with CP and their families, this study calls for placing more attention on the importance of sleep in pediatric health. Authors: Hulst RY, Gorter JW, Voorman JM, Kolk E, Van Der Vossen S, Visser-Meily JMA, Ketelaar M, Pillen S, Verschuren O. Dev Med Child Neurol. 2021 May 15. doi: 10.1111/dmcn.14920.
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