Dear CanChild,

Welcome to the June 13th edition of CanChild Today! Read more to celebrate our victories, explore our must-have products, and seize opportunities to join groundbreaking research. Plus, catch up on cutting-edge publications by our brilliant members!

Don't keep the excitement to yourself - share our newsletter and resources with your circle! Register here to subscribe to the CanChild Today! newsletter for free. Can't get enough? Access our past issues archived here.

CanChild at the 36th meeting of the European Academy

of Childhood Disability (EACD) 2024!

This year’s EACD 2024 Annual Conference was a spectacular event held in the charming city of Bruges, Belgium, drawing a record-breaking 1,200 attendees! Our CanChild team dazzled with 28 contributions across various formats, making our work, like the F-words and innovative tools such as PEM-CY and PREP, a highlight of many presentations. A heartfelt thanks to all researchers and students for their stellar contributions! Check out these snapshots!

Celebrating McMaster's Societal Impact Seed Grant winners!

Supported by the Office of the Vice-President, Research, the Societal Impact Seed Grant is designed to drive meaningful campus-society collaborations across the disciplines. Five McMaster researchers were awarded a combined $85,000 in the inaugural round of the grant. Among the winners are two CanChild teams that have innovative projects.

Wenonah Campbell, Victoria Boyd and Sandra Vanderkaay have partnered with the Ontario Society of Occupational Therapists to co-create a continuing professional development (PD) program that helps Occupational Therapists (OTs) navigate and address inequities in tiered service delivery models. The project aims to set a clear path toward supporting school-based OTs across Ontario in enacting equitable delivery of tiered services for all children.

Michelle Phoenix and CanChild have partnered with SMILE Canada to support children with disabilites and their families who are newcomers to Canada. These indvidiuals face multiple barriers when accessing healthcare services, such as out-of-pocket healthcare expenses, communication barriers, stigma, and transportation limitations. The project aims to develop co-created solutions and resources that can be used to improve culturally responsive healthcare services for newcomer children with disabilities and their families.

School of Rehabilitation Science Champion Award winner!

Recognizing unwavering dedication and impactful contributions to the School of Rehabilitation Science, the SRS Champion Award celebrates those who have steadfastly supported research and education within the field, demonstrating a minimum of five years of commitment. We are thrilled to announce that CanChild partners Kim Hesketh and the Children’s Treatment Network have coveted this award, showcasing how their outstanding contributions have left an indelible mark on our community.

Unlock your child's communication potential with FOCUS!

Ready to witness your preschooler's communication skills skyrocket? Meet FOCUS-34 - your ultimate ally in tracking and boosting your child's communicative journey. Whether at home, school, or out and about, FOCUS-34 is your go-to for measuring progress and celebrating milestones.

Why FOCUS-34? It’s a game-changer for parents and clinicians alike, offering a comprehensive toolkit to accurately gauge and cheer on your child's communicative growth. Watch as your little one flourishes, diving headfirst into the world around them with actionable steps provided.

Trusted by experts and backed by Speech-Language & Audiology Canada (SAC-OAC), FOCUS-34 is the gold standard in communication assessment tools for clinical practice. Plus, it's built on solid evidence, connecting speech therapy to real, observable improvements using cutting-edge measurement science.

Inside the FOCUS-34 package, you'll find a treasure trove: a detailed manual, user-friendly scoresheets, and practical tools to measure progress in real-life scenarios. From stringing words into sentences to expressing needs and thriving in social settings, FOCUS-34 covers it all.

Head over to the CanChild Shop, pick your license type and language, and get all materials conveniently bundled in a ZIP file. It's time to unleash your child's full communicative potential - with FOCUS-34, you're not just tracking progress; you're igniting their journey to thrive.

Are you interested in a more in-depth tool for research and detailed analysis? Explore our original FOCUS, a comprehensive 50-item measure that provides the depth and detail you need! For those who need a thorough evaluation tool, FOCUS offers extensive insights into children's communicative growth.

Have questions? Click here for FAQs! 

For additional information about other CanChild products, visit the CanChild Shop!

COVID Time Capsule: Participate in a Research Study!



Researchers at CanChild Centre for Childhood Disability Research are extending an invitation to Canadian parents of children between 8-21 years of age 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, check the study website or email Anna Swain at minchena@mcmaster.ca.

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.

Research on Ethnic Children with Neurodevelopmental Disability in partnership with the University of Manitoba and McGill University

In collaboratio with a research team from the University of Manitoba, McGill University, and parent research partners, we are inviting ethnic minority (racialized) parents and/or caregivers of children with a neurodevelopmental disability (NDD) to participate in two studies that will explore your experiences with healthcare and social services:

• The first study involves a 1.5-hour interview where you'll get to create a journey map, and you'll receive a $50 gift card of your choice as a thank you.
• The second study is an online survey that takes about 35 minutes, with a chance to win one of 50 gift cards worth $50 each.

Excited to share your story and help make a difference? Check out the flyers below or email michelle.kee@umanitoba.ca to get involved!

Patient caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

Explore the critical role of patient engagement in healthcare decision-making with our latest publication. Despite the proven benefits, youth with chronic conditions and their caregivers are often excluded from consensus-building in healthcare. This scoping review aims to bridge that gap by synthesizing existing literature on patient and knowledge user involvement in these processes. Using the thorough Joanna Briggs Institute method, we analyzed studies from key medical databases to understand how patient engagement strategies are implemented in healthcare consensus-building. The findings, to be widely disseminated through publications and conferences, will provide fresh insights into enhancing patient involvement, ultimately improving health outcomes and care experiences.

Authors: Sarah E. P. Munce, Elliott Wong, Dorothy Luong, Justin Rao, Jessie Cunningham, Katherine Bailey, Tomisin John, Claire Barber, Michelle Batthish, Kyle Chambers, Kristin Cleverley, Marilyn Crabtree, Sanober Diaz, Gina Dimitropoulos, Jan Willem Gorter, Danijela Grahovac, Ruth Grimes, Beverly Guttman, Michèle L Hébert, Megan Henze, Amanda Higgins, Dmitry Khodyakov, Elaine Li, Lisha Lo, Laura Macgregor, Sarah Mooney, Samadhi Mora Severino, Geetha Mukerji, Melanie Penner, Jacklynn Pidduck, Rayzel Shulman, Lisa Stromquist, Patricia Trbovich, Michelle Wan, Laura Williams, Darryl Yates, Alene Toulany

The Pediatric Autism Research Cohort (PARC) Study: Protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism

Understanding autism's ever-changing nature is crucial for timely, personalized care for children. This study is a dynamic, multi-site, patient-oriented journey aimed at tracking the development of young children newly diagnosed with autism. We follow 1,300 kids under 7 from diagnosis to age 8, with regular check-ins every six months, across six sites in Canada and one in Israel. Parents use a custom online portal to complete questionnaires, receiving progress reports after each assessment. Our goal is to map out the diverse developmental paths these children take and pinpoint factors influencing their adaptive functioning, especially during critical transitions like starting school. With ethics approvals in place and a collaborative approach involving stakeholders, our findings will shape future policies and programs, ensuring the best outcomes for children with autism. 

Authors: Anna Kata, Patrick G. McPhee, Yun-Ju Chen, Lonnie Zwaigenbaum, Deepa Singal, Caroline Roncadin, Teresa Bennett, Melissa Carter, Briano Di Rezze, Irene Drmic, Eric Duku, Sherry Fournier, Julia Frei, Stephen J. Gentles, Kathy Georgiades, Ana Hanlon-Dearman, Lorraine Hoult, Elizabeth Kelley, Judah Koller, Olaf Kraus de Camargo, Jonathan Lai, Bill Mahoney, Ronit Mesterman, Olivia Ng, Sue Robertson, Peter Rosenbaum, Mackenzie Salt, Mohammad S Zubairi, Stelios Georgiades

What supports and services post COVID-19 do children with disabilities and their parents need and want, now and into the future?

The COVID-19 pandemic has uniquely impacted children and youth with disabilities, along with their families, but their voices often go unheard. This study shines a light on these experiences through a blend of visual methods and interviews with 18 Canadian children and their parents. Conducted from January to July 2023, we explored the multifaceted challenges and unexpected silver linings these families encountered. The findings reveal a pressing need for flexible, consistent, and holistic services that foster solid relationships and cross-sector coordination, supporting the entire family's well-being now and into the future.

Authors: Kinga Pozniak, Anna Swain, Genevieve Currie, Amanda Doherty-Kirby, Danijela Grahovac, Jeanine Lebsack, Wenonah Campbell, Cathy Humphreys, Sarah Patterson, Sandeep Raha, Jess Whitley, Olaf Kraus de Camargo