Dear CanChild,

Welcome to the February 5th 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.

Transition to Adulthood During COVID-19: Virtual Town Hall

Join the conversation on February 8, 2024, and add your voice to the discussion about improving healthcare transition for Canadian youth with special healthcare needs. 

This patient-oriented research project is exploring the impact of the COVID-19 pandemic on young adults aged 16-24 years with special healthcare needs, including developmental, physical, or mental health conditions. The Virtual Town Hall Meeting will be an opportunity to review experiences, suggested solutions, and priorities that have been identified through interviews and surveys with youth and families.

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Transition vers l'âge adulte pendant la COVID-19 : Forum virtuel

Joignez-vous à la discussion le 8 février 2024 et faites entendre votre voix sur l'amélioration de la transition en matière de soins de santé pour les jeunes Canadiens ayant des besoins spéciaux en matière de santé.

Ce projet de recherche axé sur le patient explore l'impact de la pandémie de COVID-19 sur les jeunes adultes âgés de 16 à 24 ans ayant des besoins spéciaux en matière de santé, incluant des conditions de développement, physiques ou de santé mentale. Le Forum virtuel sera une occasion de revoir les expériences, les solutions proposées et les priorités identifiées grâce aux entrevues et aux sondages menés auprès des jeunes et de leurs familles.

Concussion: Return to School Guidelines Brochure: CanChild's Concussion Management brochures are fabulous resources for parents, physicians and community agencies. This informative, evidence-based, pediatric-specific brochure provides facts about concussions, including symptoms and a clear plan for return to activity with step-by-step guidelines for children and youth experiencing varying degrees of symptom status. The brochures highlight that a concussion is a brain injury that changes the way the brain functions and 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.

Due to limited quantities, please contact us at ccstore@mcmaster.ca for ordering information.

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

COVID Time Capsule

Researchers at CanChild Centre for Childhood Disability Research are inviting 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, please contact Anna Swain at minchena@mcmaster.ca or visit the webpage for the COVID Time Capsule

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. 

Towards multi-faceted outcomes of participation-based interventions: mapping the PREP’s effects for children and youth with disabilities

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: Yu-Hsin Hsieh, Mallory Ryan, Dana Anaby

Relationship between sensory processing patterns and gross motor function of children and adolescents with Down syndrome and typical development: a cross-sectional study

Children and adolescents with Down syndrome (DS) may experience impairments in sensory and motor skills that can be interrelated. This study involved 25 participants with DS and 25 participants with typical development (TD) to (i) compare the sensory processing patterns and gross motor function between children and adolescents with DS and with TD and (ii) to explore associations between these areas in both DS and TD groups. The sensory processing patterns, gross motor function, and the differences between the two groups were examined. The study showed that children with DS showed greater difficulties with sensory processing than TD children in Seeker, Avoider, Sensitivity, Registration, Auditory, Touch, Movements, Oral, Conduct, Socioemotional, and Attentional domains. Additionally, children with DS presented lower gross motor function than TD in standing, walking, running, and jumping. Correlations were also found between greater difficulties with sensory processing in Touch and lower gross motor function in walking, running, and jumping for the DS group. Results suggest more difficulties in sensory processing patterns and gross motor function in children with DS than in TD. Also, there is a single association between more difficulties in sensory processing and less well-developed motor function in the DS group. Therefore, a comprehensive assessment of all these aspects should be performed in children and adolescents with DS, along with providing relevant interventions addressing specific needs.

Authors: B H Brugnaro, M F Pauletti, C R G Lima, B N Verdério, R I Fonseca-Angulo, B Romão-Silva, A C de Campos, P Rosenbaum, N. A. C. F. Rocha

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



This 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. This was an observational study involving 48 children/adolescents with DS. Significant and positive correlations were found between the frequency of participation at home with Daily Activities, Social/Cognitive and Responsibility. For involvement, significant and positive correlations were found with Daily Activities, Social/Cognitive and Responsibility. 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.

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