Dear CanChild,

Welcome to the July 26th edition of CanChild Today! Read more to celebrate our successes, explore our must-have products, and seize opportunities to join groundbreaking research. Plus, catch up on cutting-edge publications by our members!

Don't keep the excitement to yourself - share our newsletter and resources with your circle! Register here to subscribe to the CanChild Today! newsletter for free. Can't get enough? Access our past issues archived here.

Celebrate 35 Years of Impact!

Fill out our Impact Survey!

Your support has been instrumental in shaping CanChild's profound impact on families and communities worldwide. To better understand and measure this impact, we're conducting an impact survey to measure this success and shape our future efforts. Your responses will help us identify areas where our work has made a difference, shape future directions for CanChild's research and outreach efforts, and assess the effectiveness of our research initiatives. Your insights and experiences are invaluable as we continue out mission to generate meaningful knowledge and improve lives!

Join us in making a difference!

Our mission is clear: to generate knowledge that improves lives and expands our impact. While grants fund much of our research, your donations are crucial for disseminating our work and amplifying the voices of children and families worldwide. We invite you to join us in our mission! Your donations can help us:

• Enable patient and family partners to participate in scientific conferences
• Disseminate reports of lived experiences to raise awareness
• Translate our results and tools into French and other languages

Donate Now: Your gift will directly support our programs and the communities we serve.



Spread the Word: Share our story with friends and family to extend our impact.

Together, let's celebrate our achievements and gear up for future successes. Thank you for your unwavering support!

Securing the COTF Grant for Ehlers-Danlos Syndrome Research!

Sandra VanderKaay, alongside co-investigators Dr. Peter Rosenbaum and Marie Grandisson, has been awarded a prestigious grant from the Canadian Occupational Therapy Foundation (COTF) for their groundbreaking research titled "Occupational Therapy with Children and Youth with Ehlers-Danlos Syndrome: An Exploratory Study." This accolade underscores the Foundation’s enduring commitment to advancing research and scholarship in the field of occupational therapy.

Save the date: 2024 AACPDM Community Forum!

American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) is hosting a community forum, an educational event developed by families to serve as a resource for individuals with cerebral palsy and their parents/caregivers. This year’s event promises to be a day of connection, learning, and empowerment, bringing together experts, advocates, and community members to share insights and support. Join us on Saturday, October 26, 2024, at the Quebec City Convention Centre, where an engaging and informative day awaits.

Stay tuned for more details on the agenda and featured speakers. Don't miss this opportunity to be part of a vibrant community dedicated to making a difference in the lives of those affected by cerebral palsy. Learn more here.

Dr. Peter Rosenbaum’s Take on the F-Words and the PARC Study

Dr. Peter Rosenbaum was invited to a webinar speaker series from co-investigators on the Pediatric Autism Research Cohort (PARC) study where he presented “The F-Words for Child Development: What the ‘F’ is THAT about?” This presentation dives into the transformative shifts in the field of child-onset developmental issues, driven by the W.H.O.'s ICF framework for health and further animated by CanChild's F-Words initiative.

This session also offers an insightful look at the PARC study, which follows young children with new autism diagnoses across multiple sites in Canada. The study aims to uncover the individual and environmental factors that influence developmental pathways, focusing on communication, socialization, and emotional and behavioral skills. By generating critical evidence, PARC seeks to pave the way for more personalized services and supports for children with autism. We extend our heartfelt thanks to Stelios Georgiades and his team for their invaluable contributions and invitation to this impactful presentation. Watch the full presentation here.

COVID Time Capsule: Participate in a Research Study!



Researchers at CanChild Centre for Childhood Disability Research are extending an invitation to Canadian parents of children between 8-21 who have a disability or extra healthcare needs to participate in a survey. We want to hear about your family’s experiences during COVID and your ideas about what services and supports families like yours need moving forward. We designed this survey based on stories that other youth and parents shared with us. We would like to hear from you! Parents will get a gift card as a thank you for their time.

For more information, check the study website or email Anna Swain at minchena@mcmaster.ca.

Measure of Processes of Care (MPOC 2.0)

Researchers at CanChild have developed a new questionnaire to measure parents’ experiences with healthcare services for their children with disabilities. Now, we would like to have parents test it out!

Complete a set of questions to tell us about your experiences with healthcare services. You will receive a $20 e-gift card upon completion!

Interested in participating? Want more information?

Please email the study team at mpoc2@mcmaster.ca



This study has been reviewed by the Hamilton Integrated Research Ethics Board under project #15702.

Research on Ethnic Children with Neurodevelopmental Disability in partnership with the University of Manitoba and McGill University

In collaboration with a research team from the University of Manitoba, McGill University, and parent research partners, we are inviting ethnic minority (racialized) parents and/or caregivers of children with a neurodevelopmental disability (NDD) to participate in two studies that will explore your experiences with healthcare and social services:

• The first study involves a 1.5-hour interview where you'll get to create a journey map, and you'll receive a $50 gift card of your choice as a thank you.
• The second study is an online survey that takes about 35 minutes, with a chance to win one of 50 gift cards worth $50 each.

Excited to share your story and help make a difference? Check out the flyers below or email michelle.kee@umanitoba.ca to get involved!

Investigating physiological symptoms associated with mental health symptoms in youth with cerebral palsy: An observational study

More than half of children and youth with cerebral palsy (CP) face mental health challenges, with anxiety and depression being the most prevalent. Alongside these mental health issues, they also experience a range of physiological symptoms such as fatigue, pain, a sedentary lifestyle, and sleep disturbances, all of which significantly impact their daily lives. Despite the clear connection between these physical symptoms and overall well-being, little research has been conducted to explore their impact on mental health outcomes in youth with CP. Our recent study aims to fill this crucial gap.

In a comprehensive cross-sectional observational study, we examined how individual and cumulative physiological symptoms affect anxiety and depression in youth with CP. Forty young individuals aged 8 to 18 years, along with their caregivers, participated in this study. Using a combination of caregiver- and self-reported questionnaires, we measured pain, fatigue, anxiety, and depressive symptoms. Additionally, participants wore accelerometers for seven consecutive days, providing us with invaluable non-invasive data on physical activity and sleep patterns.

Our findings revealed that youth with CP experience significant physiological symptoms, alongside elevated levels of anxiety and depression. Using linear regression models, we discovered that all physiological factors were predictive of caregiver-reported youth anxiety (R² = 0.23) and youth depressive symptoms (R² = 0.48). Specifically, fatigue, pain severity, sleep efficiency, and physical activity levels each played a significant role in contributing to these mental health challenges.

Authors: Laura K. Brunton, Daniela Testani, Carly A. McMorris, Chris A. Clark, Hangsel Sanguino, Elizabeth G. Condliffe, Melanie E. Noel, Daniel C. Kopala-Sibley,

Quality Indicators for Transition from Paediatric to Adult Care for Youth with Chronic Conditions: Protocol for an Online Modified Delphi Study

The transition from pediatric to adult care presents a significant challenge within the health system, especially for youth with chronic health conditions. In both Canada and globally, this transition is recognized as a top priority in adolescent health, necessitating the development of applicable, adaptable, and relevant national metrics to assess and benchmark success across various disease populations and clinical settings. Unfortunately, existing literature often overlooks the engagement of youth and caregivers in developing these indicators, as well as their applicability across chronic conditions, primary care involvement, and health equity considerations.

Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and mental health conditions, clinical settings, and health jurisdictions. Using an integrated knowledge translation (iKT) approach, we will form a panel of youth, caregivers, interdisciplinary healthcare providers, and health system leaders to collaborate with our research team. This collaboration ensures that the study methodology, materials, and knowledge dissemination reflect the perspectives of youth and their families. An iterative 3-round Online Modified Delphi (OMD) study will be conducted to compare and contrast the views of these stakeholders on quality indicators for transition and prioritize a key set that are most important, useful, and feasible in the Canadian context.

Funded by the Canadian Institutes of Health Research and Physicians Services Incorporated, this study will generate quality indicators to evaluate and inform actions to improve the transition from pediatric to adult care for youth and their families in Canada. By addressing the gaps in current literature and emphasizing the importance of stakeholder engagement, this research will contribute significantly to the enhancement of health services for young people with chronic conditions, ensuring a smoother and more effective transition to adult care.

Authors: Alene Toulany, Dmitry Khodyakov, Sarah Mooney, Lisa Stromquist, Katherine Bailey, Claire E. H. Barber, Michelle Batthish, Kristin Cleverley, Gina Dimitropoulos, Jan Willem Gorter, Danijela Grahovac, Ruth Grimes, Beverly Guttman, Michèle L. Hébert, Tomisin John, Lisha Lo, Dorothy Luong, Laura MacGreogor, Geetha Mukerji, Jacklynn Pidduck, Vjura Senthilnathan, Rayzel Shulman, Patricia Trbovich, Sara E. P. Munce

The Development and Pilot Testing of a Fidelity Checklist for a Family-Centered Telehealth Intervention for Parents of Children with Motor Delay

This multi-methods study describes the development of a pediatric rehabilitation telehealth intervention fidelity checklist, estimates its inter-rater reliability, and documents raters' implementation experience. A literature scan and expert consultation identified eighteen key behaviors and categorized them into three subdomains, measured using a 5-point measurement system. To estimate the checklist’s inter-rater reliability, three raters scored 33 video recordings. A Shrout and Fleiss Class 1,1 intraclass correlation (ICC)) and 95% confidence intervals (CI) calculated ICCs = 0.5 (CI: 0, 0.9) for both the Therapist and the Parent-Therapists subdomains, and the Parent subdomain an ICC = 0.3 (CI: 0, 0.8). In the implementation surveys, raters reported high levels of satisfaction (100%), ease of use (84% to 88%), and confidence in their video ratings (87% to 100%). Changes in procedures and scoring were recommended. Capturing raters’ implementation experiences is crucial in the early evaluation of the fidelity checklists for telehealth. 

Authors: Karen Hurtubise, Michelle Phoenix, Chantal Camden, Raphaëlle Gauthier, Paul Stratford, Rosalie Dostie, Audrée Jeanne Beaudoin, Désirée Maltais, Jade Berbari, Isabelle Gaboury