Dear CanChild,

Welcome to the January 16th edition of CanChild Today! In this issue, we highlight new initiatives and events, information about this week's featured CanChild product, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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.

As we bid farewell to 2023 and welcome 2024, we want to thank you for being a part of our community. You have helped us grow and improve our services throughout the year, and we are grateful for your support and feedback.

We hope that 2024 brings you joy, health, and success in all your endeavors. We have many exciting things in store for 2024! Be sure to follow us on social media and watch for our newsletters to get the latest updates from CanChild!

We wish you a happy and prosperous New Year!

CanChild member Dr. Andrea Cross has joined McMaster University's Department of Pediatrics as an Assistant Professor and academic scientist, effective November 1, 2023! 

Cross completed her postdoctoral fellowship at CanChild, where she co-led the development of three large research programs with international reach, including the Family Engagement in Research (FER) Training Program, the F-words for Child Development Knowledge Translation and Research Program, and the ENVISAGE Program. 

Locally, she has been awarded funding to co-lead a new FHS Community of Practice focused on implementing best practices in patient and family engagement in research across the Faculty. In addition, she also teaches in the School of Rehabilitation Science and is an executive committee member of McMaster's Master of Health Management Program. 

Transition to Adulthood During COVID-19: Virtual Town Hall

Join the conversation on February 8, 2024, and add your voice to the discussion about improving healthcare transition for Canadian youth with special healthcare needs. 

This patient-oriented research project is exploring the impact of the COVID-19 pandemic on young adults aged 16-24 years with special healthcare needs, including developmental, physical, or mental health conditions. The Virtual Town Hall Meeting will be an opportunity to review experiences, suggested solutions, and priorities that have been identified through interviews and surveys with youth and families.

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Transition vers l'âge adulte pendant la COVID-19 : Forum virtuel

Joignez-vous à la discussion le 8 février 2024 et faites entendre votre voix sur l'amélioration de la transition en matière de soins de santé pour les jeunes Canadiens ayant des besoins spéciaux en matière de santé.

Ce projet de recherche axé sur le patient explore l'impact de la pandémie de COVID-19 sur les jeunes adultes âgés de 16 à 24 ans ayant des besoins spéciaux en matière de santé, incluant des conditions de développement, physiques ou de santé mentale. Le Forum virtuel sera une occasion de revoir les expériences, les solutions proposées et les priorités identifiées grâce aux entrevues et aux sondages menés auprès des jeunes et de leurs familles.

Concussion: Return to Activity Guidelines Brochure: CanChild's Concussion Management brochures are fabulous resources for parents, physicians and community agencies. This informative, evidence-based, pediatric-specific brochure provides facts about concussions, including symptoms and a clear plan for return to activity with step-by-step guidelines for children and youth experiencing varying degrees of symptom status. The brochures highlight that a concussion is a brain injury that changes the way the brain functions and must be taken seriously!

The Concussion Management brochures are available for free download on the CanChild website or by ordering them from the CanChild Store. By ordering them from the store you will receive glossy printed versions that are attractive for display and distribution. The charge for glossy printed brochures will cover production costs.

Due to limited quantities, please contact us at ccstore@mcmaster.ca for ordering information.

For additional information about this product, visit the CanChild Shop!

COVID Time Capsule

Researchers at CanChild Centre for Childhood Disability Research are inviting 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, please contact Anna Swain at minchena@mcmaster.ca or visit the webpage for the COVID Time Capsule

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.

Exploring the Impact of Factors on Children's Viewing Experiences

In partnership with CBC Kids and Reading Lab, CanChild is exploring the impact of different factors on children's video-viewing experiences.

This research study is ideal for English-speaking children in Canada aged 6 to 10. Participants will watch short video clips and answer questions afterward. Children will need a minimum first-grade reading level to participate. Children with significant cognitive impairment are not eligible for the study but those with corrected visual impairments are welcome to participate. It can take place online or in person at McMaster University.

Interested parents, please email cbccc@mcmaster.ca. Compensation will be provided whether your child completes the study or chooses to withdraw at any point. Please note that no-shows will not be compensated.

This study has been reviewed by the Hamilton Research Ethics Board under Project #16432. 

Co-designing solutions to enhance access and engagement in pediatric telerehabilitation

Prior to the COVID-19 pandemic, children's therapy appointments provided by Ontario's publicly-funded Children's Treatment Centre (CTCs) primarily occurred in-person. With COVID-19 restrictions, CTCs offered services via telerehabilitation (e.g., video, phone), which remains a part of service delivery. CTC data shows that families experience barriers in attending telerehabilitation appointments and may need supports in place to ensure service accessibility. This study aimed to co-design innovative solutions to enhance access and engagement in ambulatory pediatric telerehabilitation services. This manuscript reports the co-design process and findings related to solution development. For this research project, an EBCD approach was used to improve the experience of telerehabilitation services. Interviews were conducted with 27 caregivers and 27 clinicians, and four co-design meetings were held to address the priorities identified. The data collected from the interviews and co-design meetings were analyzed through qualitative content analysis. Findings from the co-design meetings emphasized the importance of communication, consistency and connection (the 3C's) in experiences with telerehabilitation. The 3C's are represented in the co-designed solutions aimed at changing organizational processes and generating tools and resources for telerehabilitation services. By enhancing the experience with telerehabilitation, families will encounter fewer barriers to accessing and engaging in this service delivery model.

Authors: Meaghan Reitzel, Lori Letts, Cynthia Lennon, Jennifer Lasenby-Lessard, Monika Novak-Pavlic, Briano Di Rezze, and Michelle Phoenix

A commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada

This paper identifies the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada.This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub.

Authors: Linda Nguyen, Claire Dawe-McCord, Michael Frost, Musa Arafeh, Kyle Chambers, Dana Arafeh, Kinga Pozniak, Donna Thomson, JoAnne Mosel, Roberta Cardoso, Barb Galuppi, Sonya Strohm, Alicia Via-Dufresne Ley, Caitlin Cassidy, Dayle McCauley, Shelley Doucet, Hana Alazem,

Anne Fournier, Ariane Marelli and Jan Willem Gorter

Surviving transition: A qualitative case study on how families adapt as their youth with medical complexity transitions from child to adult systems of care



This study examined how families of youth with medical complexity (YMC) adapt to challenges and opportunities posed by the youth’s transition to adulthood and transfer to adult services. In partnership with two parent co-researchers and underpinned by complex adaptive systems and the Life Course Health Development framework, a qualitative case study was conducted with seventeen participants from 11 families of YMC (aged 16–30) living in Ontario. Data from 21 interviews were analyzed using reflexive thematic analysis and theory-driven analysis. Supplementary documents shared by the participants were also analyzed. Three overarching themes were generated. “Imagining, pursuing, and building a good future” describes families’ priorities and visions for the youth’s life as an adult. “Perils and obstacles of an imposed transition” examines challenges that families face in their pursuit of a good future. Lastly, “surviving the transition” describes how families are forced to advocate, make sacrifices, and persist in their efforts to adapt to transition. Pediatric providers should offer anticipatory guidance, partner with families in advocacy, and provide psychological support during transition. Education for adult and primary care providers should focus on developing professional competencies in the safe care of YMC, building capacity through clinical exposure, and creating culturally safe environments. Most importantly, YMC and their families need a model of care that can provide integrated, holistic, multidisciplinary care management across the lifespan.

Author: Lin Li a, Nancy Carter, Jan Willem Gorter, Linda Till, Marcy White, and Patricia H. Strachan