Dear CanChild,

Welcome to the September 21st edition of CanChild Today! In this issue, we highlight upcoming events, new resources, 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.

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.

Make sure you're following CanChild on our social media platforms to stay up-to-date on special news, events, ways to participate in research, and so much more!

Come by our online community and connect with us and other like-minded people on the following platforms:

Facebook: CanChild Hamilton

Twitter: @canchild_ca

LinkedIn: CanChild Centre for Childhood Disability Research



We are proud to be included in a new provincial child development and rehabilitation resource created by Sunny Hill Health Centre with the BC Children’s Hospital Foundation.

This is a searchable website with development and rehabilitation resources and services for children and youth with neurodiversity and/or disability for families, clinicians, educators, children and youth.

The resources listed on this website are specific to British Columbia.

The Perceived Efficacy and Goal Setting, 2nd Edition (PEGS) system enables young children (ages 5-9 years) to self-report their perceived competence in everyday activities and to set goals for intervention.

Using a set of cards that show self-care, school, and leisure activities, children identify the activities that are challenging for them and choose those that they are motivated to work on. Parallel questionnaires for caregivers and educators allow for multiple perspectives to be considered in collaborative goal setting.

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

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 complexities of weight management care for children with spina bifida: a qualitative study with children and parents

The purpose of this study was to explore how children with spina bifida (SB) and their parents understand body weight, health and weight management and to identify what services and supports children with SB and their families feel are most appropriate to help them manage their health and weight. Results showed that children and parents had a weight-centric approach to health related to the child's mobility. Weight regulation was often seen as the child’s responsibility, which could lead to feelings of guilt and shame through internalized weight stigma. Healthcare professionals working with children with spina bifida should explore their perceptions, beliefs, and behaviours related to weight, health and mobility to ensure they are not causing themselves physical and/or psychological harm. Helping families place more value on health over weight may reduce feelings of stigma while allowing children to develop autonomy over health-related decisions.

Authors: Madison L Giles, Geoff D C Ball, Revi Bonder, Annick Buchholz, Jan Willem Gorter, Katherine M Morrison, Arnaldo Perez, Meaghan Walker, Amy C McPherson.

Effects of a 12 week community-based high-level mobility programme on sustained participation in physical activity by adolescents with cerebral palsy: a single subject research design study

This study aimed to assess if a high-level mobility programme (HLMP) can promote sustained participation in physical activity by adolescents with cerebral palsy. Eight adolescents with cerebral palsy completed 24 community-based group HLMP sessions across 12 weeks. The participants set attendance, involvement, performance goals, and completed activity diaries over the course of 58 weeks and undertook physical capacity tests. Results showed attendance was highest during COVID lockdown, involvement goals were consistently met throughout the study, and physical capacity improved post-intervention. Most participants improved physical capacity post-intervention, but only some had sustained attendance and involvement in physical activity, highlighting the complexity of physical activity participation.

Authors: Gaela Kilgour, Ngaire Susan Stott, Michael Steele, Brooke Adair, Amy Hogan, Christine Imms

Collaborative working in speech and language therapy for children with DLD-What are parents' needs?



This study explores parents’ needs in collaboration with speech and language therapists (SLT) during therapy for their young child with developmental language disorders (DLD). Twelve parents of children with (a risk of) DLD aged 2-6 years were recruited through SLTs. They participated in semi-structured interviews about their needs when collaborating with SLTs. A phenomenological approach was used, with a focus on parents’ lived experiences. These interviews were read/listened to and discussed by a parent panel, multiple researchers, and the interviewer.

The results showed that the interviews had six themes: (1) knowing what to expect, (2) knowing how to contribute, (3) feeling capable of supporting the child, (4) trusting the therapist, (5) alignment with parents and children's needs, preferences, and priorities and (6) time and space for asking questions and sharing information.

This study concludes that parents of children with DLD need SLTs to invest time to create optimal collaboration. Parents need to have enough knowledge about DLD and the SLT process, skills, and confidence in how to support their child and opportunities to share thoughts and questions with SLTs.

Author: Inge S Klatte, Manon Bloemen, Annemieke de Groot, Tina C Mantel, Marjolijn Ketelaar, Ellen Gerrits.