Dear CanChild,

Welcome to the December 7th 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!

Please feel free to share CanChild newsletter & resources with family, friends and colleagues. 

They can subscribe to the CanChild Today! newsletter for free by registering here. 

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

Join us as Kristy Wolfe shares with us how digital storytelling can be incorporated into child health research. Dive into a world where stories leap off the screen, blending technology and narrative to share scientific knowledge with lived experience in health research and healthcare. Join us for a collaborative time that promotes innovation, inspiration, and imagination! Don't miss the chance to be part of this digital storytelling event. Secure your spot now, and let the stories unfold!

When: Dec 7 at 7pm OR Dec 13 at 12pm ET (1.5 hrs)

Where: Online

You’re invited to join the Canada Revenue Agency (CRA) for the live and interactive webinar to learn more about the benefits and credits available to persons with disabilities and their caregivers.

This webinar will cover:

• Disability tax credit (DTC)
• Child disability benefit, Canada workers benefit disability supplement, Canada caregiver credit and other benefits and credits
• registered disability savings plan (RDSP) and Home Buyers’ Plan
• ways to do your taxes and other CRA services

This will also include a Q&A during the webinar to answer questions live. Space is limited, so make sure to register for the webinar in advance! If you are an organization that provides tax services to persons with disabilities, you are encouraged join the webinar and share the event details with your clients.

The webinar will be held on Wednesday, December 13, 2023, at the following times:

Concussion: Mild Traumatic Brain Injury: This Infants & Toddlers Concussion Management brochure is designed specifically for the younger age group (under 5). It provides facts about concussions, prevention information, and tips on concussion management. This brochure highlights that a concussion is a brain injury and a child of any age could have a concussion, so it must be taken seriously!

The Concussion Management brochures are available for free download on the CanChild website or by ordering them from the CanChild Store. By ordering them from the store you will receive glossy printed versions that are attractive for display and distribution. The charge for glossy printed brochures will cover production costs.

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 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  

A cross-sectional survey of healthcare professionals supporting children and young people with epilepsy and their parents/carers: which topics are raised in clinical consultations and can healthcare professionals provide the support needed?

Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics. 88 HCPs in the UK (who worked with CYP with epilepsy and their parents/carers) completed a cross-sectional online survey. CYP with epilepsy and their parents/carers were reported to ask HCPs for information, advice and support about a range of topics, most commonly, cognition and mental health. HCPs varied in how able they felt to adequately support families about these topics, as well as their views about which resources could be most useful. Having insufficient time and a lack of suitable services and resources to refer to, or draw upon, were key barriers to HCPs being able to support CYP and their families. Findings have implications for how HCPs could best be supported to deal with topics raised by CYP and families in clinic, highlighting the potential usefulness of informational resources on key topics for HCPs, parents/carers and CYP.

Authors: Georgia Cook, Lucy Bray, Bernie Carter, Paul Gringras, Christopher Morris, Deb K Pal, Holly Saron, Catrin Tudur Smith, Luci Wiggs

Participation of Children With Autism During COVID-19: The Role of Maternal Participation

This study described the participation of children with autism aged 6 to 13 during the COVID-19 pandemic and examined the extent to which child factors, mother's own participation, and environmental barriers/supports explain child participation in the home and community. A total of 130 mothers completed the Participation and Environment Measure for Children and Youth (PEM-CY), the Health Promoting Activities Scale, the functional issues checklist, and the sociodemographic questionnaire. Children's participation frequency and involvement were significantly higher at home than in the community. Multiple regression models indicated that the child's age and mother's participation frequency significantly explained the child's home involvement, where the mother's participation had a unique contribution at home but not in the community. Findings imply the importance of maternal participation to child's participation at home and suggest redirecting attention for enhancing family participation as a whole.

Authors: Ziru Wang, Anat Golos, Jonathan A Weiss, Dana Anaby

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



Collaborative practice between therapists and parents is a key element of family-centred care and is essential if we want to address family priorities and needs in interventions. However, collaborative practice is challenging for speech and language therapists (SLTs) and parents. To facilitate collaboration, collaborative practices need to be implemented into speech and language therapy for young children with developmental language disorders (DLD) and their families. This study aims to explore parents’ needs in their collaboration with SLTs during therapy for their young child with DLD. Twelve parents of children with (a risk of) LD in the ages of 2-6 were recruited via SLTs. The parents participated in semi-structured interview about their needs in collaboration with SLTs. The analysis of the interviews resulted in 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. The study concludes that parents’ needs are inline with collaborative working as described in literature, which underlines the importance of implementing collaborative working in speech and language therapy for young children with DLD.

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