March 26, 2014
CanChild Today
Greetings!  

This issue of CanChild Today features two resources that are available for families and youth on the CanChild website....The KIT: Keeping it Together™, and the KIT: Keeping it Together™ for Youth. In addition, our new Measurement and Analysis Service is highlighted, along with recent publications by CanChild scientists, research associates, international collaborators, and post-doctoral fellows. 
 
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CanChild launches new service to improve care to families and support organizations
CanChild is excited to announce the launch of its new Measurement and Analysis Service. This service, beginning with the Measure of Processes of Care-20 (MPOC-20), will provide consultation, electronic data collection, analysis and reporting to organizations for a fee. To learn more, click here. The new service will benefit families by assisting organizations to provide services that are more family-centred, a best practice in pediatric rehabilitation. We are really pleased to be able to assist organizations to improve their services to children and families. To inquire about this service for your organization please contact canchild@mcmaster.ca
Resources on the CanChild website (www.canchild.ca)!
The KIT: Keeping it Together™
The KIT is an organizational tool for parents of children and youth with special needs, developed by CanChild and the Hamilton Family Network. It is a way for parents to organize information for their child, and to assist parents when interacting with different service systems (ie health, education, recreation). Our research shows that the KIT fosters advocacy, communication and partnerships between parents and service providers. Included is a User's Guide that will help individuals 'get started' and provides tips (how to find resources, specific situations). Click here to learn more about the KIT and here to view KIT forms.

The KIT: Keeping it Together™ for Youth (the Youth KIT)
The Youth KIT helps youth with disabilities give, get, and organize their own information, in a way that promotes self-advocacy and empowerment as they begin taking responsibility during the transition to adulthood. The modules comprise all areas of transition to adulthood, including transition to high school, transition to post-secondary education, getting a job, transition to work, and include worksheets and training videos. Click here to access the Youth KIT on the CanChild website and here to listen to videos that describe how to get started, and how to use the Youth KIT as a mentor.
Recent Publications by CanChild Members
ICF-based functional components and contextual factors as correlates of perceived quality of life for youth with chronic conditions

This research assesses quality of life (QOL) for youth with chronic conditions in terms of life satisfaction or "global perceived QOL". International Classification of Functioning, Disability, and Health (ICF)-based functional components and contextual factors associated with global perceived QOL were studied, from youth and parent perspectives. Participants were 439 youth with chronic conditions (and one of their parents). Results: Key factors that impact youth perceived QOL included family social support, family functioning, school productivity, school belongingness/safety, youth spirituality, youth pain/physical symptoms, emotional functioning, and environmental barriers. These findings can guide clinicians in taking a family-centred, holistic approach with their clients. Authors: J McDougall, V Wright, D DeWit, L Miller. Access to full article in Disability and Rehabilitation!

 

The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school and community 

The aim of this study published in Archives of Physical Medicine & Rehabilitation by the PEP study team was to test the effect of personal and environmental factors on children's participation across three different settings (home, school and community) using Structural Equation Modeling. The Participation and Environment Measure for Children and Youth (PEM-CY) was completed by 576 parents of children and youth with and without disabilities. Results: Environmental barriers and supports served as significant mediators between child/personal factors (income, health condition, functional issues) and participation outcomes. These findings support the development of interventions targeting modifiable environmental factors. Authors: D Anaby, M Law, W Coster, G Bedell, M Khetani, L Avery, R Teplicky. Abstract. 

 

Autism spectrum disorder: Advances in evidence-based practice

In this review published in CMAJ, the authors outline the current understanding of autism spectrum disorder (ASD), and suggest best practices for medical and specialized clinics based on evidence in the literature and expert opinion. Key points: ASD is more common than previously thought, and affects more than 1% of the population. The heterogeneity in cause and presentation of ASD is discussed in the article. Early detection through improved awareness, family studies or screening programs allows early and effective interventions. A fictional case is used to illustrate how the process may be applied. Resources for physicians are also presented. Authors: E Anagnostou, L Zwaigenbaum, P Szatmari, E Fombonne, BA FernandezA, M Woodbury-Smith, J Brian, S Bryson, IM Smith, I Drmic, JA Buchanan, W Roberts, SW Scherer. Full access!

 

Post-concussion symptoms and impaired balance are two factors that limit return to activity for adolescents with mild traumatic brain injury (MTBI). Post-injury assessments that challenge activity tolerance and balance skills are needed to ensure readiness to return to activity. This study published in Physical & Occupational Therapy in Pediatrics evaluated the Nintendo Wii as a measure of exertion and balance testing for youth with MTBI. Results: Wii interactive video games can be used to assess exertion in youth with MTBI. Frequency counts of loss of balance during Wii game play were not associated with performance on standardized balance tests. Authors: C DeMatteo, D Greenspoon, D Levac, JA Harper, M Rubinoff. Abstract. 
 
Quality-of-life after brain injury in childhood: Time, not severity, is the significant factor
The objectives of this study were to illustrate the long-term quality of life trajectories at 5 years post-acquired brain injury (ABI). The quality of life of children admitted to a children's hospital with ABI was assessed for a minimum of 5 years post-injury using the Child Health Questionnaire. The quality was significantly poorer than the normative data on all domains and at all-time points except at baseline. Sustaining an ABI of any severity decreases quality of life for children and youth. This impact is further affected by time post-injury and cause of injury. Published in Brain Injury. Authors: CA DeMatteo, SE Hanna, R Yousefi-Nooraie, CY Lin, WJ Mahoney, MC Law, D McCauley. Abstract.
CanChild was formed in 1989 by Dr. Peter Rosenbaum, Dr. Mary Law, and Dr. David Cadman, and was originally called the Neurodevelopmental Clinical Research Unit, or NCRU. It was located in a temporary building at the Chedoke Site in Hamilton. The name was changed to 'CanChild' Centre for Childhood Disability Research in 1999 following a renaming contest, and it was a parent who suggested this name to reflect 'Canada' and 'can' (to be able to).
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Contact Us: if you have any questions or comments, please contact us at canchild@mcmaster.ca.