July 2015

Welcome to the July edition of CanChild Today! Summer is in full swing, and we are excited to feature a collection of innovative resources for promoting child and youth participation in leisure and community activities! Additionally, we are pleased to share a new report on brain disorders in Ontario, an opportunity to get involved in cerebral palsy research, and several recent publications by our CanChild colleagues.

Please feel free to share CanChild resources and this newsletter with family, friends and colleagues. They can subscribe to the CanChild Today e-Newsletter for free by registering here. Our past issues are archived on the CanChild website, and can be accessed here!

Featured CanChild Resource!

Participation Knowledge Hub

A Knowledge Hub for Parents, Service Providers and researchers

The Participation Knowledge Hub is an evidence-based online resource for sharing information about child and youth participation. The materials that are available on the Participation Knowledge Hub, including Participation Tip Sheets, success stories, and research summaries, have been developed with input from families, service providers, and researchers.

Featured Tip Sheets for Parents:	Featured Tip Sheets for Youth:
Joining a New Sports Team Trying a New Activity Change Rooms	Swimming Lessons Organized Group Activities Art Lessons

Visit the Participation Knowledge Hub!

Get Involved in Research!

Are you a teenager or adult (age 16-30) with Cerebral Palsy in Ontario?

Check out the MyStory Project!

Most brain research for people with Cerebral Palsy (CP) focuses on early brain development. More research is needed to understand how the brain changes through the teenage years and into adulthood.

The MyStory Project will study physical health

(fatigue and pain), mental health (anxiety and depression), chronic stress and overall well-being in adolescents and young adults with CP between the ages of 16-30.

Learn more!

Featured Community Resource!

Brain Disorders in Ontario
Prevalence, Incidence and Costs from Health Administrative Data

The Ontario Brain Institute and the Institute for Clinical Evaluative Sciences (ICES) partnered to create a comprehensive snapshot of individual brain disorders throughout Ontario. The report encompasses 13 brain disorders and gives estimates for:

How many people are living with each disorder and their population data, such as age, sex, and income
The number of new cases identified each year
An overview of direct healthcare costs associated with each disorder

Knowing the current impacts and costs of brain disorders brings attention to the care needs of Ontarians, and can be used for better program planning, policy and decision-making. This makes the report an important step in ensuring that people receive the services and care they need. The data also serve as a benchmark to track changes in brain disorder demographics over time.

Explore brain disorders in Ontario online.

Honours and Awards

Congratulations to Niina Kolehmainen on receiving a Merit Award from the British Association and College of Occupational Therapists.

Congratulations to the following members of the CanChild community on receiving CIHR Foundation Scheme grants :

Eyal Cohen | Health Outcomes of Children with Medical Complexity and

their Caregivers

Lonnie Zwaigenbaum | A Foundation Grant to Improve Early Detection, Diagnosis, and Treatment of Autism Spectrum Disorder

Jill Zwicker | Using Brain Imaging to Determine Predictors of Developmental Coordination Disorder and Response to Intervention

Recent Publications by CanChild Members

The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community.

Participation at home, school and in the community has a positive impact on the life of a child with a physical disability, and parents play a crucial role in facilitating participation. This study provides a comprehensive understanding of the thoughts, feelings and concerns experienced by parents as they reflect on their actions, challenges and needs in enabling participation for their child. The lived experience and knowledge of parents should be of relevance to policy makers and service providers who work to improve rehabilitative and other services for children with physical disabilities. Authors: Piskur B, Meuser S, Jongmans MJ, Ketelaar M, Smeets RJ, Casparie BM, Haarsma FA, Beurskens AJ. Disabil Rehabil. 2015 Jun 29:1-10. [Epub ahead of print]

Can parents' concerns predict autism spectrum disorder? A prospective study of high-risk siblings from 6 to 36 months of age.

In this study, parents of children at low and high risk of developing Autism Spectrum Disorder (ASD; children with an older sibling diagnosed with ASD are considered high-risk) were asked to report concerns they had regarding developmental factors including sleep, repetitive movements, communication and behavioural problems during the first two years of life. Researchers then assessed how these reported concerns related to diagnostic outcome for ASD at age 3 years. It found that parents of high-risk children who were later diagnosed with ASD reported more concerns between 6-24 months than parents of children (both high and low risk) who did not develop ASD. This signifies that parent-reported concerns can improve earlier recognition of ASD in high-risk children. Authors: Sacrey LA, Zwaigenbaum L, Bryson S, Brian J, Smith IM, Roberts W, Szatmari P, Roncadin C, Garon N, Novak C, Vaillancourt T, McCormick T, MacKinnon B, Jilderda S, Armstrong V. J Am Acad Child Adolesc Psychiatry. 2015 Jun;54(6):470-8. doi: 10.1016/j.jaac.2015.03.014. Epub 2015 Mar 28.

Children's perspective of quality of life in epilepsy.

Epilepsy can have an impact on all aspects of a child's health and quality of life (QOL); however, factors such as seizures, antiepileptic drugs, cognitive impairment, and psychological and social spheres have been explored without conclusive evidence about which ones contribute most to child QOL. This study is novel in that it relies on child self-report, rather than dependence on parental report to assess child QOL. It finds that from the perspective of 8 - 14 year old children, QOL is not related to seizure severity but is associated with mental health and peer and parental support. Thus, a sole focus on seizure control is insufficient care for influencing the child's perception of their life. Authors: Fayed N, Davis AM, Streiner DL, Rosenbaum PL, Cunningham CE, Lach LM, Boyle MH, Ronen GM; QUALIT� Study Group. Neurology. 2015 May 5;84(18):1830-7. doi: 10.1212/WNL.0000000000001536. Epub 2015 Apr 3.

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