Dear CanChild,

Welcome to the February 9th edition of CanChild Today! In this newsletter you will find a featured CanChild product, an upcoming event, journal submission opportunity, opportunities to participate in research, and plain language summaries of recent publications.

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

The Perceived Efficacy and Goal Setting (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.

Turning Lived Experience Into Research for a Book

After 20 years of being a full-time complex care parent to her son Nicholas, Donna Thomson embarked on a research journey to better understand the meaning of a life devoted to caring. Two years of intensive research led to the publication of her book The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving and later, another co-written book with professor and researcher Dr. Zachary White: The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver. Join Donna and Rachel Martens as they reflect on what it means to become a citizen-researcher.

Donna Thomson is a caregiver, author and educator. She is a co-designer and co-instructor of the Family Engagement in Research course as well as the FER Leadership Academy at CanChild. She also facilitates the free online course, Caregiving Essentials at McMaster Continuing Education.

Creating Equitable Spaces in Family Engagement in Research

Happening next Wednesday, February 15 from 1-3pm ET!

CanChild members will be facilitating a Trainee Hub workshop on building meaningful relationships between families and researchers.

The Hub is open to graduate student, post-doctoral research fellow, and clinical trainee members of the Centre. 

CanChild Co-Director Dr. Olaf Kraus De Camaro is one of three topic editors who are accepting submissions for research topics on children's disabilities.

This research topic aims to focus on children with disabilities, and transformative solutions that can empower them through childhood to adulthood to enhance their own capacities and lead prosperous lives.

The following article types will be welcomed into this collection: Clinical Trial, Editorial, General Commentary, Mini Review, Opinion, Original Research, Perspective, Policy Brief, Review, and Systematic Review.

The deadline for the abstract submission is April 3, 2023, while the manuscript deadline is July 31, 2023.

If you have a child between 8-21 who has a disability…

Researchers at CanChild Centre for Childhood Disability Research, McMaster University invite both you and your child to participate in a research study about your experiences during Covid and ideas about improving health and education services and supports. We will work with each family to figure out a way for all youth and parents to share their stories in a way that works for them. For more information, email Anna Swain at minchena@mcmaster.ca.

Do you want to participate in more CanChild research?

• Adolescents and young adults with cerebral palsy, and their healthcare providers: We want to explore the influence of sexuality and gender on the health care transition. Interested? Contact us at lbrunto3@uwo.ca or usalma@uwo.ca
• Seeking occupational therapists in Ontario to explore the ethical tensions experienced during the transition from traditional pull-out approaches to tiered service delivery in school-based occupational therapy, and to identify the appropriate practice support needs. Contact Sandra VanderKaay at vandes22@mcmaster.ca.
• Transition to Adulthood During COVID-19 Research: Recruiting Canadian youth (ages 16-24) with special healthcare needs to participate in an online interview.

Interrater Reliability of the FOCUS-34: Parent-to-Parent and Parent-to-Clinician. 

This brief report presents interrater reliability data for the Focus on the Outcomes of Communication Under Six (FOCUS-34) between parents, and between parents and speech-language pathologists (SLPs). Reliability for all three raters combined was good to excellent across three assessments. Reliability for pairs of raters was variable but generally good.

Cunningham, B. J., Rosenbaum, P., Nepotiuk, A., & Thomas-Stonell, N. (2023). Communication Disorders Quarterly, 152574012211464. doi: 10.1177/15257401221146491

Practitioner-led, peer-group sports intervention combined with a context-focused intervention for children with cerebral palsy: A protocol of a feasibility randomised clinical trial. 

This paper describes the protocol for a randomized controlled trial, which aims to find a new way to encourage children with cerebral palsy to be more active during their free time. Eighteen children with cerebral palsy will be split into two groups. One group will receive 8 group sessions called Sports Stars, which will help them learn and participate in popular sports. The other group will also receive Sports Stars, but also 8 individual sessions to help them overcome any barriers to participating. The study will check if this new approach is feasible, accepted, and if the children are in fact more active. The researchers will also check if the children understand the program and if their families feel empowered. The results will be measured before, after, and 12 weeks after the program.

Souto, D. O., da Silva, L. C., de Sousa Junior, R. R., Clutterbuck, G., Anaby, D., Longo, E., Magalhães, R. C., Camargos, A. C. R., & Leite, H. R. (2023). BMJ Open, 13(1), e068486. doi: 10.1136/bmjopen-2022-068486