Dear CanChild,

Welcome to the November 21st edition of CanChild Today! In this issue, we highlight new initiatives and events, 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.

Join us for an exciting online event, the CP-NET Science and Family Day 2023! Get ready for a day filled with learning, exploration, and connection.

On Friday, November 24, 2023, starting at 10:00 AM (Eastern Standard Time), you'll have the opportunity to hear from thought leaders, researchers and persons with lived experience on the theme of "Relationships". Our virtual platform will offer a range of captivating presentations and panel discussions.

Sessions will be co-presented and bring together a host of closely related research and Knowledge Translation activities into a new way of looking at the world of ‘childhood disability’.

To learn more about this event and see the event program, click 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.

For more information, visit the Transition Hub website.

PREP – Pathways and Resources for Engagement and Participation - is an evidence-based intervention that focuses on enhancing participation through modifying the environment. Using this skills-based approach, therapists work with the client (and his/her parent or caregiver when appropriate) to identify aspects of the environment and the activity that either support or hinder participation.

The online module includes:

• Background information about PREP
• Detailed description of the PREP assessment and intervention protocol, including videos of occupational therapists using PREP with clients.
• Real-life scenarios to highlight elements of the environment that have been modified to enable participation
• Practical forms to record assessment findings and intervention plans
• References to research evidence and key literature that has contributed to the development of PREP

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

Autism Survey: Help improve a strengths-based communication classification tool



Researchers want caregiver input on the Autism Classification System of Functioning by completing by completing a 10 – 20 minute survey. 

You may be eligible for this research if:

1. You are a caregiver of a child on the autism spectrum
2. Interested in sharing your perspectives of a communication tool

For more information, please contact:

Janine Schmedding-Bartley: janine.l.s.bartley@uky.edu

Mary Jo Cooley Hidecker: maryjo.cooleyhideceker@uky.edu

Have you been involved in activities to make a difference in children’s health or pediatric pain?

We are currently recruiting participants for a brief online survey, including patients and caregivers, who have taken part in activities to make a difference in children’s health and pediatric pain through knowledge-sharing activities.

These activities may include (but are not limited to):

• Development of clinical practice guidelines
• Creation of information resources such as handouts, posters, or videos
• Advisory committee participation
• Research evidence summaries
• Health service improvement activities
• Education or training for health professionals
• Activities promoting policy changes

Those who complete the study have the opportunity to be entered into a draw for a $25 CAD gift card.

Click here to learn more.

If you have any questions about your eligibility or concerns about this study, contact us at itdoesnthavetohurt@iwk.nshealth.ca

Exploring the Impact of Factors on Children's Viewing Experiences

In partnership with CBC Kids and Reading Lab, CanChild is exploring the impact of different factors on children's video-viewing experiences.

This research study is ideal for English-speaking children in Canada aged 6 to 10. Participants will watch short video clips and answer questions afterward. Children will need a minimum first-grade reading level to participate. Children with significant cognitive impairment are not eligible for the study but those with corrected visual impairments are welcome to participate. It can take place online or in person at McMaster University.

Interested parents, please email cbccc@mcmaster.ca. Compensation will be provided whether your child completes the study or chooses to withdraw at any point. Please note that no-shows will not be compensated.

This study has been reviewed by the Hamilton Research Ethics Board under Project #16432. 

Help us Pilot the ENVISAGE-SP Program

We wish to engage with service providers (SPs) who work with children with developmental challenges, delays or disabilities and their families. Our aim is to pilot a series of five online workshops for service providers. 

We are a team of researchers, clinicians and parent researchers in Canada and Australia. We have co-designed a series of workshops for service providers, called ENVISAGE-SP. Developed from our current family-directed ENVISAGE-FAMILIES program, the focus of ENVISAGE-SP is to introduce service providers to new ideas about health, development, parenting, family well-being, and ways to communicate and collaborate with families and colleagues.

What is ENVISAGE? 

ENVISAGE stands for ENabling VISions And Growing Expectations. ENVISAGE-FAMILIES comprises five caregiver-friendly online workshops for parents/caregivers of young children new to the journey of parenting a child with a neurodisability.

The overall aims of the ENVISAGE-SP program are to:  

(i) increase service providers’ knowledge of, and attitudes towards, skills and self-efficacy to apply contemporary evidence-informed holistic, strengths-based, function-promoting, and family-centred approaches, and support the translation of these key ideas into clinical practice, and 

(ii) enhance service providers' practice by providing a vehicle and tools for how to better support families  

Association between participation at home and functional skills in children and adolescents with Down syndrome: A cross-sectional study

This observational study investigated whether participation opportunities (frequency and involvement) for children/adolescents with Down Syndrome (DS) in a realistic environment at their own home are associated with the functional skills related to the domains of Daily Activities, Mobility, Social/Cognitive and Responsibility. Forty-eight children/adolescents with DS were evaluated using the Participation and Environment Measure for Children and Youth (PEM-CY) home environment setting and Pediatric Evaluation of Disability Inventory speedy version (PEDI-CAT-SV). Higher frequency and involvement of participation at home are associated with greater functional skills assessed, except for Mobility. This study provided pioneering insights about the relationships between the level of home participation and functional skills in DS, generating evidence that could guide approaches to participation-focused intervention.

Authors: Beatriz Helena Brugnaro, Olaf Kraus de Camargo, Luzia Iara Pfeifer, Silvia Letícia Pavão, Oksana Hlyva, Nelci Adriana Cicuto Ferreira Rocha

Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities

This concept paper highlights the known challenges associated with parenting a child with a developmental disability (DD). It discusses the intersectionality of factors impacting parental health and well-being to promote more equitable, holistic, and inclusive healthcare for all family members of children with DDs.Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are often 'child-centric,' wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact. It also stems from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. 

Authors: Monika Novak-Pavlic, Peter Rosenbaum, Briano Di Rezze

Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities



Autistic individuals who are assigned female at birth (AFAB) and those who are gender diverse experience health disparities and clinical inequity, including late or missed diagnosis and inadequate support. In this Viewpoint, an international panel of clinicians, scientists, and community members with lived experiences of autism reviewed the challenges in identifying autism in AFAB individuals. It proposed clinical and research directions to promote the health, development, and well-being of autistic AFAB individuals. The recognition challenges stem from the interplay between cognitive differences and nuanced or different presentations of autism in some AFAB individuals; expectancy, gender-related, and autism-related biases held by clinicians; and social determinants. Emerging evidence suggests that the higher prevalence of autism in individuals who are assigned male than assigned female at birth results from both biological factors and identification biases. It is recommended that professional development for clinicians be supported by healthcare systems, professional societies, and governing bodies to improve equitable access to assessment and earlier identification of autism in AFAB individuals. Autistic AFAB individuals should receive tailored support in education, identity development, health care, and social and professional sense of belonging.

Author: Meng-Chuan Lai, Anouck Amestoy, Somer Bishop, Heather M Brown, Morénike Giwa Onaiwu, Alycia Halladay, Clare Harrop, Emily Hotez, Marisela Huerta, Amy Kelly, Dylan Miller, Christine Wu Nordahl, Allison B Ratto, Celine Saulnier, Paige M Siper, Kristin Sohl, Lonnie Zwaigenbaum, Sylvie Goldman