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Special Edition December 3, 2013
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Greetings!
Did you know that today - December 3rd - is International Day of Persons with Disabilities? This year's theme is "Break Barriers, Open Doors: for an inclusive society and development for all". We are delighted to distribute this special issue of CanChild Today, and to announce the official launch of the Parenting Matters subsite! The purpose of this special section on the CanChild website is to share information about supports and services that exist to support children and youth with a neurodevelopmental disorder and their families in Canada.
In this issue, we also highlight new resources on the CanChild website, as well as recent publications by CanChild scientists, research associates, international collaborators and post-doctoral fellows. Feel free to share CanChild resources and this newsletter. Family, friends and colleagues can subscribe to CanChild Today for free by registering here. Past issues are archived!
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Parenting Matters! is now available on the CanChild website!
The Parenting Matters! (PM!) project is a research study funded jointly by the Canadian Institutes of Health Research (CIHR) and the Bloorview Research Institute. The study seeks to develop a better understanding about what it means to parent a child with a neurodevelopmental disorder and the day-to-day experiences of these families. As part of this project, PM! researchers have undertaken a national review of the legislation, policies and programs that exist to support children and youth with a neurodevelopmental disorder and their families. This review is shared on the new Parenting Matters! website to provide families and service providers with a broader understanding of available services and how they can be accessed in their area. Click here to view Parenting Matters! subsite.
How young is too young? New Preschooler focus newsletter
For many young children, organized sport participation is a key contributor to physical activity levels. It is important to focus on fun and active play in the early years, rather than on skills mastery and competition. This new Preschooler focus newsletter produced by the Child Health & Exercise Medicine Program at McMaster University provides evidence-informed information about sport participation for preschool aged children, and other resources. Click here to read more, and here to access previous issues.
Hyperbaric Oxygen Therapy (HBOT) as a treatment for cerebral palsy
This new Keeping Current summarizes the research evidence for the use of hyperbaric oxygen therapy with children with cerebral palsy. A description of the technique, how it works in the human body, and the risks, are also included. Click here to read more.
"What Participation Means to Me"
These video clips feature young adults who were part of a Participation Intervention study at CanChild. In the clips, the participants answer the question, "What does participation mean to me?" and talk about what it was like to focus on achieving their leisure-based participation goals. "Meet Kenny" and "Meet the Participation Intervention Team" are two new videos. Click here to view! |
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Recent Publications by CanChild Scientists, Research Associates, International Collaborators, & Post-Doctoral Fellows
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The aim of this review published recently in Developmental Medicine & Child Neurology was to systematically review all studies that have measured the associations between children's contact with people with disabilities and their attitudes towards disability. Thirty-five studies, published between 1966 and 2011, were included in this review, which was led by Megan MacMillan, a PhD student with PenCRU. The results were mixed, but many of these studies suggest that children's contact with people with disabilities is associated with more positive attitudes towards disability. Authors: M MacMillan, M Tarrant, C Abraham, C Morris. Abstract. Plain language summary available here!
Development of social functioning and communication in school-aged (5 - 9 years) children with cerebral palsy
The aim of this study published in Research in Developmental Disability was to examine contributing factors to the changes in social functioning and communication in young school-aged children with cerebral palsy (CP) over a 2-year period. The investigators concluded that motor functioning and intellectual ability can be used to identify children at risk for progressive restrictions in social functioning and communication. For children with CP and social and communicative restrictions, multidisciplinary assessment and treatment may be indicated as well as extra support in social situations with peers to enhance their social development and communication. Authors: PE van Schie, RC Siebes, AJ Dallmeijer, C Schuengel, DW Smits, JW Gorter, JG Becher. Abstract.
Comparing contents of outcome measures in cerebral palsy using the international classification of functioning (ICF-CY): A systematic review
This systematic review identifies and compares the content of outcome measures used in studies of children with cerebral palsy (CP) using the International Classification of Functioning - Children and Youth version coding system; and describes the most frequently addressed areas of functioning in those studies, in the context of the development of ICF Core Sets. Information is provided about the content of measures that may guide researchers and clinicians in their selection of an outcome measure for use in studies or clinical practice with children with CP. Published in the European Journal of Paediatric Neurology. Authors: V Schiariti, AF Klassen, A Cieza, K Sauve, M O'Donnell, R Armstrong, LC Mâsse. Abstract.
Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions
This study published in Quality of Life Research reviewed the extent to which activity and participation outcomes (important to child health) are included in clinical trials of childhood chronic disease and to determine what trial characteristics are associated with their use. A review of a large clinical trial registration database was conducted over the 2010 calendar year. Results: Most registered clinical trials for children with chronic or ongoing medical conditions do not include a comprehensive approach to health outcomes assessment. Activity and participation outcomes are needed in pediatric clinical trials for comprehensive health evaluation. Authors: N Fayed, O Kraus de Camargo, I Elahi, A Dubey, RM Fernandes, A Houtrow, E Cohen. Abstract.
The challenges of loss to follow-up in longitudinal pediatric Acquired Brain Injury research: One research team's experiences
This article published in Pediatrics Research International Journal described our team's experiences in conducting longitudinal projects with children and youth with acquired brain injury. We aimed to explore factors associated with loss to follow-up and reviewed strategies that were adopted to enhance retention. While no particular pattern in demographics and injury factors was found to predict retention, those who were well engaged from the commencement of the project were more likely to continue participating over time. It might be more effective for future research to take a proactive approach by implementing the retention strategies as early as possible. Authors: CY Lin, C DeMatteo. Full access!
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Happy Holidays and All the Best in 2014!
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