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Welcome to the June edition of
CanChild Today! In this issue, we are excited to share our 2019 Annual Report, COVID-19 resources, podcast, research opportunities, news and recently published work by some of our members.
Please feel free to share CanChild resources & newsletter with family, friends and colleagues.
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Our past issues are archived on the CanChild website and can be accessed here.
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We are proud to present the 2019 CanChild Annual Report! In 2019, we celebrated CanChild's 30th anniversary and this report highlights anniversary celebrations, accomplishments, research, grants and publications throughout the year. The report showcases the continued positive impacts that scientists, researchers, health professionals, students and families working together have on children and youth with disabilities, including their families.
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Disability: Perception of Professionals and Parents!
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In this
video podcast,
Dr. Peter Rosenbaum talks about his editorial,
'You have textbooks; we have story books'. Disability as perceived by professionals and parents
. The idea of this editorial came from Elizabeth Chambers, a parent who believes in the value of knowing a child or youth with disabilities beyond labels and diagnoses. "He's not found in one textbook, he is a story book. And you have to let him tell you the story and the family around you," says Elizabeth.
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Mental Health in Adolescents and Young Adults with Cerebral Palsy
CP-NET in partnership with the Ontario Federation for Cerebral Palsy are proud to share a workshop, Mental Health in Adolescents and Young Adults with Cerebral Palsy, led by Dr. Jan Willem Gorter. This workshop explores the preliminary findings from the MyStory study, provides resources to help cope during COVID-19, and strategies framed around the F-Words on how to stay active and engaged!
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#MyCOVIDDisabilityQ Twitter Campaign
Canadians have been asking experts from CanChild, Kids Brain Health Network and CHILD-BRIGHT about child or youth disabilities and the ongoing COVID-19 situation. You can view the questions by visiting the
Q&A Section
on our website or participate in the discussions by following @mycovidquestion and using #MyCOVIDDisabilityQ hashtag on Twitter!
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Children with disabilities face health risks, disruption and marginalization under coronavirus
Dr. Michelle Phoenix published an article in The Conversation about the impacts of COVID-19 to children with disabilities. She discussed the coronavirus risks, home-based family concerns, group living environments, mental health concerns, and ways to advocate for inclusion and accessibility during the pandemic.
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Risk of COVID-19 to Children with Brain-Based Developmental Disabilities
CHILD-BRIGHT Network conducted a
rapid review that aims to assess the impact of coronavirus to the development of complications and poorer prognosis of children with brain-based disabilities.
You can download the full rapid review document, research brief and infographic on the
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The Networks of Centres of Excellence Program renewed the Kids Brain Health Network (KBHN) for three more years. Part of the network's renewal planning is to identify initiatives that promote the improvement of outcomes for children with neurodevelopmental disabilities and their families. As a result, KBHN will continue to support the Family Engagement in Research (FER) Certificate of Completion Program run by CanChild.
The FER course is for researchers (graduate students, research coordinators, investigators, clinician-researchers, etc.) and families (parents, siblings, grandparents) who have an interest in child neurodevelopmental research. This training program is unique in that it brings researchers and families together in a fully integrated online course. Visit the Student Project webpage to see the Knowledge Translation tools created by FER students.
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Daily Exercise in Children/Teen with Epilepsy Survey
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We are looking for participants for a web survey that is looking at what helps or makes it easy
or hard to exercise for children and teens with epilepsy. The survey is done online and will take
approximately 40 minutes to complete. Both the child/teen and the parent(s) would each be
asked to complete a different survey. We hope to use the information to improve the survey
and work with the epilepsy community and share the survey all over Canada.
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In order to participate:
- Child/teen age must be 8-17- Child/teen must have been diagnosed with epilepsy by a neurologist or epileptologist and had to have had at least one seizure in the past 12 months
- Child/teen is not required to be taking anti-epileptic medication
- All participants must have at least a Grade 3 level of speaking/reading English
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If you are interested in participating in the study, or have any further questions, please contact
Principal investigator: Gabriel Ronen MD,
Division of Pediatric Neurology,
Department of Pediatrics, McMaster University and McMaster Children's Hospital, Hamilton, Ontario
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Recent Publications by CanChild Members!
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Adolescents with epilepsy or cerebral palsy (CP) self-reported equal or better Quality of Life (QoL) than the general population. This cross-sectional observational study assessed 16,783 participants from 17 countries using the KIDSCREEN-52 and Parenting Stress Index (PSI). Results indicated clinically significant differences in the school environment domain, in which the epilepsy and the epilepsy/CP groups showed higher scores than the general population. The parents of the epilepsy group showed higher stress levels than the CP and epilepsy/CP groups. Future steps are needed to compare longitudinal trends in QoL and parenting stress, and to explore societies outside of Canada and Europe.
Authors: Boldyreva U, Streiner D, Rosenbaum P, Ronen G.
Dev Med Child Neurol. 2020 May. doi: 10.1111/dmcn.14450
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Environmental Factors that Impact the Workplace Participation of Transition-Aged Young Adults with Brain-Based Disabilities: A Scoping Review
The International Classification of Functioning, Disability and Health (ICF) places importance on the environment in explaining participation in different life domains, including work. A scoping review of 31 articles showed that all environmental domains of the ICF influenced workplace participation of transition-aged young adults (18-35 years old) with brain-based disabilities. Facilitators to workplace participation are social support, physical accessibility, and availability of assistive technology. Conversely, attitudes of colleagues and employers toward persons with brain-based disabilities are barriers to employment and workplace participation. Findings can inform the development of policies and support at the organization level. Authors: Shahin S, Reitzel M, Di Rezze B, Ahmed S, Anaby D. Int J Environ Res Public Health. 2020 Mar 31. doi: 10.3390/ijerph17072378.
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Strategies Used to Engage Hard-To-Reach Populations in Childhood Disability Research: A Scoping Review
Specific 'hard-to-reach' groups may be systemically excluded from opportunities to engage in research. Health services are often structured to exclude these populations, and by design, alienate groups that could benefit the most from these services. Future work should: (1) improve on the thoroughness of reporting the characteristics of the populations engaged, (2) report on additional demographic information that specifically pertains to hard-to-reach groups, (3) examine effectiveness of engagement strategies, (4) develop valid and reliable tools to assess effectiveness of engagement, (5) study engagement during the later stages of the research process, (6) address the lack of research on how to engage hard-to-reach groups, (7) examine the engagement of children with disabilities other than ASD and CP, such as those with rare conditions, and (8) use quantitative and mixed-methods methodology to study engagement. Authors: Gonzalez M, Phoenix M, Saxena S, Cardoso R, Canac-Marquis M, Hales L, Putterman C, Shikako-Thomas K. Disabil Rehabil. 2020 Jan 20. doi 10.1080/09638288.2020.1717649
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