Dear CanChild,

Welcome to the April 27th edition of CanChild Today! In this newsletter, we highlight an upcoming Transition to Adulthood conference, the Family Engagement in Research course, and reflections from our co-Founder.

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Save The Date!! The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3, 2023, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth, families, trainees, researchers, clinicians, and policy/decision makers to celebrate the best of what we are learning, and doing, to help young people to develop fully, even when they are challenged by health conditions. For those unable to join in-person, aspects of the event will be made available in a virtual format.

Abstracts for the Transitions Pop-up are currently being accepted until May 26th in the following two categories:

• Poster Fair
• Concurrent sessions

Registration for this Pop-Up event will open in September 2023!

What's involved?

• 10 weeks | 3-4 hours/week
• Weekly group work & activities
• Participate in four 2-hour online classes
• Earn a McMaster University microcrential

Course Dates

Fall 2023 Cohort:

• September 18 - November 26

Winter 2024 Cohort:

• January 15 - March 24

Contact fer@mcmaster.ca for questions related to course applications.

We interviewed Dr. Peter Rosenbaum at the beginning of 2023. He shares with us three important learnings over the past 34 years of CanChild.

1. Think of research projects as part of research programs.
2. Seek to work with people with whom you’d share a beverage.
3. Ensure the fingerprints of families and people with disabilities in research.

CP-NET is one of the Ontario Brain Institute’s Integrated Discovery Programs. As part of an OBI stigma campaign, Amanda St. Dennis, Danny Steeves, and Jessica Geboers, members of CP-NET’s Stakeholder Advisory Group, got together for a discussion on ableism, stigma and discrimination.

The TRANSITION-Q is a psychometrically sound and clinically meaningful scale that can be used in transition programmes with adolescents starting at 12 years of age to measure and track the development of skills they need to acquire to manage their health and healthcare. The content of the scale was designed to include a range of skills that vary from those that even young adolescents should be able to do (e.g. answer a doctor’s or nurse’s questions) to skills that may require instruction or training (e.g. book a clinical appointment).

Computer Based Instrument for Low Motor LanguageTesting (C-BiLLT)

We are interested in your perceptions about the barriers and facilitators to using the in Canadian clinics and with Canadian children who have CP. Focus groups will be virtual and will be approximately 2 hours.

Please contact Sarah Hopman: hopmansn@mcmaster.ca

COVID Time Capsule

Inviting families with children between 8-21 who have a disability: We want to hear about your experiences during COVID and your ideas about what services and support families need moving forward.

Please contact Anna Swain: minchena@mcmaster.ca

A Non-Categorical Approach to Childhood Neurodisability: Concepts, Evidence, and Implications for Clinical Practice, Organization of Services, Teaching, and Research

The focus in general pediatric practice is usually on diagnosing and treating children based on their specific diagnosis. However, a non-categorical approach to child health recognizes that many children with different diagnoses may have similar needs for services and support. This approach is particularly useful for children with neurodisability, as there is a lot of overlap in symptoms and needs between different neurodevelopmental conditions. By focusing on individual functioning and needs, rather than just diagnosis, this approach could have significant implications for how services are organized and delivered, how health professionals are trained, and how research is conducted.

Authors: Anton R. Miller, Emily Gardiner & Peter L. Rosenbaum