Dear CanChild,

Welcome to the June 3rd 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.

Celebrating Andrea's Big win!

Dr. Andrea Cross, a proud 2018 doctoral graduate from our Rehabilitation Science (RS) program, is one of this year’s SRS Distinguished Alumni Award recipient! This prestigious award, established in 2012, recognizes outstanding alumni who have made significant contributions in their fields.

Dr. Andrea Cross brings a combination of creative insights and imagination, coupled with boundless energy and enthusiasm with her work. She has played a key role in developing knowledge translation products related to the F-words, and has been a leader in development of the Family Engagement in Research program.

OBI Public Talk: Nurturing the Developing Brain!

This talk is part of the 2024-25 Brain Health Across the Lifespan series and will delve into fascinating research on neurodevelopmental conditions. You’ll discover how Indigenous ways of knowing intersect with Western neuroscience concept in understanding childhood brain development from the early years to age 25.

A diverse panel of experts, including Manda Krpan Mesic - a CP-Net Advisor, will share their insights on supporting positive outcomes in cognitive development, health, and wellbeing for young people. Don’t miss out on this chance to learn from leaders in research, advocacy, outreach, and delivery of care. Mark your calendars for Monday, June 17, 2024, from 6 PM to 7.45 PM, and join us either online or in person at the DoubleTree by Hilton Hotel Toronto Downtown!

The Child Health Hub in Transition

“In a perfect world, transition practice should be the same from coast to coast…” – Hub Member

Since its inception in 2019, the Child Health Hub in Transition, co-founded by CanChild and Children’s Healthcare Canada, has grown into a vibrant network of over 200 service providers, researchers, families, youth, and decision-makers. Our mission? To create a knowledge-sharing powerhouse that bridges the gap between current treatment practices and evidence-based solutions for healthcare transitions in Canada.

The Transition Hub envisions a seamless healthcare transition experience across Canada. Whether you’re a youth with a chronic health condition, a parent or caregiver, a healthcare professional, a researcher, or a policymaker, there’s a place for you in our Health Hub in Transition. Join us in making this vision a reality!

Pathways and Resources for Engagement and Participation

(PREP) Intervention Protocol

Looking to unlock the full potential of your therapeutic practice? Meet PREP – your secret weapon! PREP is an evidence-based intervention designed to enhance participation by transforming environments. This innovative approach brings therapists, clients, and caregivers together to identify and tackle the environmental and activity-related factors that affect participation.

Imagine a world where barriers melt away and opportunities flourish. With PREP, you’ll work hand-in-hand with clients and their families to create tailored plans that break down obstacles and build on existing supports, empowering clients to dive into their favorite activities with confidence and joy.

So, what's inside the PREP online module? Dive into a wealth of background information about PREP, explore detailed descriptions of the assessment and intervention protocols, and watch captivating videos of occupational therapists in action. You'll also discover real-life scenarios showcasing successful environmental modifications, practical forms for recording assessments and plans, and references to the research that shaped PREP.

Ready to start? Preview the online module here. Purchase the module here, and you’ll receive an access code for exclusive members-only content. It’s your gateway to a practical, client and family-centered approach that not only enhances therapeutic interactions but also builds lasting capacity within clients, caregivers, and communities.

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 is extending an invitation to Canadian parents of children between 8-21 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.

Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review

Parents of children with brain-based developmental disabilities (BBDDs) like autism or cerebral palsy often experience high levels of stress and face numerous challenges. Peer-based support, where fellow parents provide emotional and practical help, has shown promise in alleviating these burdens. This study reviews existing research on individual peer-to-peer support (iP2PS) interventions for these parents, aiming to understand how such support impacts them and to identify the challenges and factors that make such support effective. An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. The review, based on 14 relevant articles, highlights the positive effects of iP2PS on parents' emotional and psychological well-being, quality of life, and ability to handle practical issues. It also identifies key challenges and facilitators, such as the balance between giving support and feeling burdened, finding suitable parent matches, logistical issues, and the importance of training and supervision for peer support providers. While iP2PS offers valuable support, there's still much to explore regarding its various styles, customization to individual needs, and the necessity of proper training and supervision. Future research should delve into these aspects to establish effective iP2PS as a standard practice for supporting parents of children with BBDDs.

Authors: Amber Postma, Marjolijn Ketelaar, Justus van Nispen tot Sevenaer, Zahra Downs, Diane van Rappard, Marian Jongmans, Janneke Zinkstok

Understanding Burnout among Parents of Children with Complex Care Needs: A Scoping Review Followed by a Stakeholder Consultation

Parental burnout, which describes the extreme stress experienced by parents of children with complex care needs (CCN), is a crucial concept that helps us understand the challenges these parents face. In this review, we examined existing research on parental burnout among caregivers of children with CCN. We found that the prevalence of burnout among these parents ranged from 20 to 77%, with higher scores compared to parents of children without CCN. Despite this, only a few studies specifically looked at burnout within the context of caregiving for children with CCN. Stakeholders, including parents, healthcare professionals, and researchers, emphasized the importance of understanding the various factors contributing to burnout in this population. By focusing on personalized definitions of parental burnout, future research can uncover the complex dynamics between individual and environmental factors affecting parental well-being.

Authors: Nathalie J.S. Patty, Karen M. van Meeteren, Agnes M. Willemen, Minke Verdonk, Marijke A. E. Mol, Marjolijn Ketelaar, Carlo Schuengel

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health

When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. 

Authors: Kinga Pozniak, Gillian King, Elizabeth Marie Chambers, Olaf Kraus de Camargo, Rachel Teplicky, Peter Rosenbaum 

Illuminating their reality: the use of metaphor by parents of children with disabilities to express their experiences of health care

A systematic procedure was used to identify and analyze metaphors spontaneously mentioned by parents in 13 focus groups held with 65 Canadian parents of children with disabilities. A total of 214 deep metaphors were identified and categorized into four target-source groupings. Parents used journey metaphors to describe experiences of uncertainty, conflict and harm metaphors to describe confrontational, harmful, and demeaning experiences of care, games and puzzles to describe the unknowns of care and attempts to resolve these unknowns, and metaphors concerning environmental barriers (i.e., walls and doors) to express feelings of exclusion and difficulties accessing care. Parents' metaphors expressed experiences of uncertainty, powerlessness, and attempts to exert agency in healthcare interactions. The metaphorical groupings provide new insights into how and why lack of family-centeredness in service delivery is bewildering, distressing, and disempowering to parents. Implications for service providers include paying attention to what metaphor use reveals about parents' experiences, and discussing parents' metaphors with them to create joint understanding, providing a fertile ground for collaboration.

Authors: Gillian King, Kinga Pozniak, Peter Rosenbaum, Elizabeth Marie Chambers, Rachel Teplicky, Sarah Earl, Madhu Pinto