Dear CanChild,

Welcome to the July 27th edition of the CanChild Today! In this issue, we highlight the F-Words social media launch, information about this week's featured CanChild product (FOCUS), 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.

We are thrilled to announce that the F-words team has launched their official Facebook and Twitter Pages to bring you exciting new content and updates! Join us on this journey by following us on Facebook and Twitter. 

Stay tuned for more exciting developments in the near future!

Facebook Link: https://www.facebook.com/canchildfwords 

Twitter Link: https://twitter.com/canchildfwords 

Are you looking for a tool to evaluate preschool children’s communication in real-world situations? 

The Focus on the Outcomes of Communication Under Six (FOCUS) is a clinical tool designed to evaluate children in the areas of “Communicative participation” at home, school or in the community following speech and language treatment. 

The FOCUS includes two versions of the tool, one for parents and another for clinicians, which links speech and language treatment to the child’s ability to communicate and participate in their world. CanChild offers the FOCUS in a number of languages. 

For additional information, or to purchase the FOCUS, please visit the CanChild shop at https://canchild.ca/en/shop/29-focus

MPOC 2.0

Researchers at CanChild Centre for Childhood Disability Research 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

COVID Time Capsule

Inviting families with children between 8-21 who have a disability: We want to hear about your experiences during COVID and your ideas about what services and supports families need moving forward.

Please contact

Anna Swain: minchena@mcmaster.ca

What do parents want from healthcare services? Reports of parents’ experiences with pediatric service delivery for their children with disabilities

Family-centred service (FCS) is an established approach for delivering services in children’s rehabilitation and healthcare. This article describes the results of a qualitative descriptive study with parents regarding what they need and want from pediatric healthcare services for their children and families. We found that parents continue to report mixed experiences with healthcare services. Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child’s care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0).

Authors: Kinga Pozniak, Gillian King, Elizabeth Chambers, Rachel Martens, Olaf Andres Kraus de Camargo, Dayle McCauley, Rachel Teplicky, and Peter Rosenbaum.

Impact of contractures on daily functioning in adolescents with spinal muscular atrophy: a qualitative study

The purpose of this study was to explore the impact of contractures in adolescents and young adults (AYA) with spinal muscular atrophy (SMA) on daily functioning, participation and the impact of received contracture management. We interviewed 14 AYA with SMA aged 16-30 years who are unable to walk without assisted devices (non-ambulant). Interviews focused on the perceived impact of contractures on daily functioning and about previous contracture management. In general, participants experienced muscle weakness to be more of a hindrance than contractures as they had adapted to their contractures over time. Participants considered contracture treatment useful when goals were meaningful and realistic. Participants mentioned that their perspective on contracture management would change in light of a promise of improved motor function due to disease-modifying treatment. We found that despite the relatively low impact of contractures in comparison to the loss of muscle strength, non-ambulant AYA with SMA should be informed on the potential impact of contractures and benefits and potential adverse effects of their management. This information can support the shared decision-making process. While respecting individual choices, this can allow for the incorporation of interventions into daily life to promote daily functions and participation when children with SMA are growing up.

Authors: I.L.B Oude Lansink, Jan Willem Gorter, W.L van der Pol, B. Bartels, A. Beelen.

Acceptability of a Multimodal Telerehabilitation Intervention for Children Ages 3–8 Years with Motor Difficulties: Results of a Qualitative Study



The purpose of this study is to explore the acceptability of a telerehabilitation intervention provided to parents of children with motor difficulties. Sixteen parents of children were purposefully recruited to participate in semi-structured interviews aimed at assessing the acceptability of the telerehabilitation intervention. Interviews were analyzed thematically. All participants described evolving acceptability associated with their interactions with the web platform. The opportunities created by telerehabilitation, suitability in relation to families’ values and perceived effects positively impacted acceptability. The understanding and consistency of intervention delivery, the child’s level of involvement, the associated parental burden of the intervention and the therapeutic alliances created also affected acceptability. Our study findings support the acceptability of a telerehabilitation intervention for families of children with motor difficulties. Telerehabilitation seems to be more acceptable to families with children without suspected or confirmed diagnoses.

Author: Rosalie Dostie, Isabelle Gaboury, Nathalie Trottier, Karen Hurtubise, and Chantal Camden.