Dear CanChild,

Welcome to the November 6th 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!

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

Join us for an exciting online event, the CP-NET Science and Family Day 2023! Get ready for a day filled with learning, exploration, and connection.

On Friday, November 24, 2023, starting at 10:00 AM (Eastern Standard Time), you'll have the opportunity to hear from thought leaders, researchers and persons with lived experience on the theme of "Relationships". Our virtual platform will offer a range of captivating presentations and panel discussions.

Sessions will be co-presented and bring together a host of closely related research and Knowledge Translation activities into a new way of looking at the world of ‘childhood disability’.

To learn more about this event and see the event program, click here.

Ready, Set, Go: Finding Positive Solutions to Support a Successful Landing in the Adult World



The Child Health Hub in Transition to Adult Healthcare is excited to host the 2nd Transition to Adulthood Pop-Up event with Children's Healthcare Canada.

Date: December 2-3, 2023

Location: Hyatt Regency in downtown Vancouver

Participants will hear from local, provincial, and Canadian thought leaders, peers and families. You can expect presentations and panels with young people and parents, networking opportunities, and a showcase of current evidence-based solutions for healthcare transition. For those unable to join in-person, aspects of the event will be made available in a virtual format.

For more information, visit the Transition Hub website.

Help improve a strengths-based communication classification tool



Researchers want caregiver input on the Autism Classification System of Functioning by completing by completing a 10 – 20 minute survey. 

You may be eligible for this research if:

1. You are a caregiver of a child on the autism spectrum
2. Interested in sharing your perspectives of a communication tool

For more information, please contact:

Janine Schmedding-Bartley: janine.l.s.bartley@uky.edu

Mary Jo Cooley Hidecker: maryjo.cooleyhideceker@uky.edu

Follow CanChild on Instagram!



CanChild has just launched our very own Instagram account! Make sure you follow us for the latest updates on our groundbreaking research, resources, shop products, events, and other initiatives!

CanChild's Instagram: @canchild_mcmaster

Young Children's Participation and Environment Measure (YC-PEM) is a parent-completed measure that looks at the different activities of children aged 0-5 years by evaluating the level of participation and qualities of the environment in which these activities take place. The results are then to be shared with the child’s health professional and therapy team to determine any adjustments to be made to help reach goals.

The foundation for lifelong health begins during the first five years of your child’s life. When young children ages 0-5 years participate in activities that take place at home, at daycare/preschool, and in the community, they can experience healthy living and learn new skills. The YC-PEM, completed by the parent or primary caregiver, and examines those activities in terms of participation and the environment.

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

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. 

Help us Pilot the ENVISAGE-SP Program

We wish to engage with service providers (SPs) who work with children with developmental challenges, delays or disabilities and their families. Our aim is to pilot a series of five online workshops for service providers. 

We are a team of researchers, clinicians and parent researchers in Canada and Australia. We have co-designed a series of workshops for service providers, called ENVISAGE-SP. Developed from our current family-directed ENVISAGE-FAMILIES program, the focus of ENVISAGE-SP is to introduce service providers to new ideas about health, development, parenting, family well-being, and ways to communicate and collaborate with families and colleagues.

What is ENVISAGE? 

ENVISAGE stands for ENabling VISions And Growing Expectations. ENVISAGE-FAMILIES comprises five caregiver-friendly online workshops for parents/caregivers of young children new to the journey of parenting a child with a neurodisability.

The overall aims of the ENVISAGE-SP program are to:  

(i) increase service providers’ knowledge of, and attitudes towards, skills and self-efficacy to apply contemporary evidence-informed holistic, strengths-based, function-promoting, and family-centred approaches, and support the translation of these key ideas into clinical practice, and 

(ii) enhance service providers' practice by providing a vehicle and tools for how to better support families  

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.

"Your brain can't wait": perspectives of children and adolescents with acquired brain injury and their parents on physical rehabilitation during the subacute phase

This study explored the perspectives of children and adolescents with acquired brain injury (ABI) and their parents with respect to physical rehabilitation during the subacute phase. Thirteen children and adolescents with ABI and their parents were included and interviewed using semi-structured interviews. Interview transcripts were analyzed using an inductive thematic analysis approach. The analysis resulted in six themes: 1) beliefs of physical rehabilitation, 2) content of physical rehabilitation, 3) tailored care, 4) impact of context, 5) communication and 6) transition. The positive can-do mentality of rehabilitation professionals creates an atmosphere of hope and is a vital requisite to achieve maximum recovery. Open dialogue between clinicians and the family is warranted about the focus of interventions.

Authors: Christiaan Gmelig Meyling, Olaf Verschuren, Ingrid C M Rentinck, Dimara van Driel, Esmée Te Slaa, Raoul H Engelbert, Jan Willem Gorter

Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study

This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. Parents/caregivers of a child with a neurodisability aged six years or less, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures and interviews were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. Strong evidence was found that the ENVISAGE-Families program was relevant to parents' needs for information, connection, support, well-being, and future preparation. Participants experienced opportunities to reflect on and validate their perspectives of disability and development and how these perspectives related to themselves, their children and family, and their service providers. The program inspired parents to think, feel and do things differently with their children, family and those working with them. It also provided them with tools to support connection, collaboration, and well-being.

Authors: L Miller, C Imms, A Cross, K Pozniak, B O'Connor, R Martens, V Cavalieros, R Babic, M Novak-Pavlic, M Rodrigues, A Balram, D Hughes, J Ziviani, P Rosenbaum

Describing healthcare concerns of adolescents and adults with cerebral palsy



This study aims to identify healthcare concerns of adolescents and adults with cerebral palsy (CP) followed in a multidisciplinary rehabilitation program and identify patient factors associated with the number of concerns raised. A retrospective chart review of initial consultations of 241 people with CP aged 14 years or older over three years was reviewed. Descriptive statistics were used to summarize data and explore association, and Poisson's regression was used to predict healthcare concerns. Patients raised a total of 2237 distinct concerns, and ten healthcare concern categories were reported by more than 25% of the sample. Adolescents and adults with CP reported a high number of healthcare concerns at the initial visit to the Transitional and Lifelong Care program, and the number of concerns may increase with advancing age. The identified concerns span various biopsychosocial spheres and support the need for ongoing specialty and multidisciplinary care of this population through their adult years.

Author: Christina M. Winger, Caitlin Cassidy, Jessica Starowicz, Laura Brunton