Dear CanChild,

Welcome to the November 10th edition of CanChild Today! We are excited to share information about CP-NET, Lukes Legacy Family Research Rounds, research opportunities, CanChild member news, and summaries of recent publications.

Please feel free to share CanChild newsletter & resources with family, friends and colleagues. 

They can subscribe to the CanChild Today! newsletter for free by registering here. 

Our past issues are archived on the CanChild website and can be accessed here.

Join us for our next Lukes Legacy Family Research Rounds on November 29 at 7pm EST. The talk is titled: Weathering the Storm: Addressing the Complex Issue of Aggression Toward Families / Caregivers in Childhood and Adolescence (AFCCA).

Meet the Speakers:

• Maude Champagne, Neurosciences Ph.D., Registered Social Worker and Psychotherapist
• Tracy Moisan, Program Director for the National Consortium on AFCCA

Take photos of yourself, family, and children doing activities that you and your family enjoy most to showcase participation of individuals with cerebral palsy. Share your photos with CP-NET to enter into the contest. With your consent, photos may be used by CP-NET and the Ontario Brain Institute for websites, newsletters, and future materials!

Key details:

• Submit photos by November 11th by clicking the link below.
• Prizes ($100.00 CAD Amazon gift cards) will be awarded to the top three photos!

Questions? Contact Alice Soper at sopera@mcmaster.ca. 

A personalizable access technology for children with cerebral palsy and complex communication needs

What is SwitchApp?

We have created a new access technology that recognizes sounds, keywords, and/or facial movements. It can be set up and personalized at home.

This study is the second step of testing how well this technology works for users.

We are looking for participants between 6-18 years old who:

• Have cerebral palsy (GMFCS level 4-5)
• Do not have a history of epilepsy
• Use an access technology (switch) for communication
• Are able to reliably indicate yes and no

What's involved?

1. Up to 10 sessions on Zoom or at Holland Bloorview (45 minutes each) and a questionnaire.

• Personalize the software
• Use your sounds and/or movements to play a custom video game.

2. Play the game at home 3 times in 3 weeks and complete 2 questionnaires.

If you think this might be useful for your child, or if you have any questions, please feel free to contact our research team:

Sarah Irwin

sirwin@hollandbloorview.ca 

(416) 425-6220 ext. 3270

Do you want to participate in more CanChild affiliated research? Current projects include:

• MPOC 2.0: Recruiting pediatric healthcare providers and caregiver of children with disabilities across Canada to provide feedback on a new tool.
• ENVISAGE-SP Program: Recruiting service providers of children with neurodevelopmental disabilities in Canada and Australia to review online workshop materials.
• Transition to Adulthood During COVID-19 Research: Recruiting Canadian youth (ages 16-24) with special healthcare needs to participate in an online interview.

For more information and to view more ongoing studies, click the button below:

CanChild Co-Director Dr. Olaf Kraus de Camargo has joined the scientific advisory board at Medical School Hamburg (MSH). Congratulations!

"MSH is a young university that grew significantly during the last years. The innovative approach of interprofessional education used in the medical and allied health courses is exemplary. Installing a scientific advisory board is an important step for ensuring excellence. I am honored to contribute to this work with my perspective from Canada.” 

In the last newsletter, we mentioned that Dr. Peter Rosenbaum received an Honorary Fellowship from the Faculty of Paediatrics of the Royal College of Physicians of Ireland on October 21st. This is the college’s highest honour. Here is a photo from that day!

Does Policy Impact Equitable Access to Services? A Critical Discourse Analysis of Discharge Policies in Paediatric Rehabilitation.

Having the choice to access rehabilitation services is a right of disabled children. In Ontario, Canada, paediatric rehabilitation services are provided by Children’s Treatment Centres (CTCs), and many manage missed appointments using discharge policies. The impact of discharge policies on access to rehabilitation services is unknown. This study critically examined the language of policies around missed appointments and impacts on service access. Using qualitative critical discourse analysis, text from discharge policies was analysed, considering how marginalised groups (e.g., low-income families, culturally diverse families) may be affected by CTC discharge policies. Discourses of family-centred service, health equity and the perpetuation of established power relations within paediatric rehabilitation were represented in the language of policies. Current policies place the organisation in a position of power, de-value family choice and risk infringing on the right of disabled children to access paediatric rehabilitation services when desired.

Authors: Meaghan Reitzel, Briano Di Rezze, Lori Letts, & Michelle Phoenix. (2022). International Journal of Disability and Social Justice. Vol. 2(2):65-90. doi: 10.13169/intljofdissocjus.2.2.0065

Being physically active with epilepsy: Insights from young people and their parents.

This study aimed to identify barriers and facilitators to adopting and maintaining physical activity (PA) among young people with epilepsy (YPE) prior to and during the COVID-19 pandemic. Ten YPE (all female) and their 13 caregivers, and five additional caregivers to males (N = 18; 72% mothers), completed virtual focus group sessions. Thematic analysis of the focus group data found both epilepsy-specific and generic themes that impact physical activity participation among YPE. By understanding these lived experiences, providers can better tailor individual support for young people with epilepsy and their families to foster and maintain a healthy active lifestyle.

Highlights include:

• YPE understand the benefits of physical activity.
• YPE are interested in physical activity that matches their interests and preferences.
• Concerns about seizures and safety need to be addressed when discussing PA.
• YPE value parental support in keeping them active.
• Electronic activity trackers can be excellent motivators to maintain PA.

Authors: Ann Mary Wilfred, Cathy Humphreys, Sarah Patterson, Denver MY Brown, Daniela Pohl, Carinna Moyes, Peter L. Rosenbaum, & Gabriel M. Ronen. (2022). Epilepsy Research, 188, 107035. doi: 10.1016/j.eplepsyres.2022.107035