Dear CanChild,

Welcome to the July 6th edition of the CanChild Today! In this issue, we highlight the call for abstract submissions for the 5th IDPA Congress, the upcoming Luke's Legacy Family Research Round, information about this week's featured CanChild product (PREP), opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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With great pleasure, the 5th International Developmental Pediatrics Association (IDPA) Congress is inviting the submission of abstracts. The IDPA Congress will be held at Indaba Hotel & Conference Centre, Fourways, Johannesburg, South Africa from November 28th to December 1, 2023.

The deadline for submissions is July 31, 2023.

Black and Minority Ethnic unpaid carers and their experiences of formal and informal support systems 

Little is known about the experiences of this group, and their access to formal and informal support. Dr. Wahida Kent will speak about the contrast between the views that professionals hold regarding the availability of family and community support for this group of families, and the accounts of carers themselves. 

Presentation takes place on Wednesday July 26 @ 1:30 p.m. EST .

We are privileged to acknowledge and attribute the many resources that have been created and shared by generous parents and colleagues around the world on CanChild's F-words hub.

We would like to highlight an exciting and inspiring video on "Frame Running" from the Jastrzębski family from Poland.

Frame Running is a sports event for people with cerebral palsy or other movement disorders. By using a 'frame runner', athletes with cerebral palsy or other movement disorders can run long distances.

Similarly, the purpose of the PREP (Pathways and Resources for Engagement and Participation) is to enhance participation through modifying the environment. Therapists work together with parents and caregivers to identify aspects of the environment and the activity that either support or hinder participation. Together, they work to change the environment and build supports to help clients participate in the activities of his/her choice.

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

Implementation of the C-BiLLT, an accessible instrument to assess language comprehension in children with limited motor and speech function: an international clinician survey

The Computer-Based Instrument for Low-motor Language Testing (C-BiLLT) is an accessible language comprehension assessment tool originally developed for children with cerebral palsy and complex communication needs. The purpose of this study was to understand the clinical contexts in which the C-BiLLT is used in the Netherlands, Belgium, and Norway and assess barriers and facilitators to implementation. An online survey was sent to rehabilitation clinicians working in the Netherlands, Dutch-speaking parts of Belgium, and Norway to assess the accessibility, appropriateness, feasibility, advantages, and perceived barriers of the C-BiLLT. Among the 90 clinicians who completed the survey, the acceptability, appropriateness and feasibility of the C-BiLLT were all rated highly. The C-BiLLT was used with various populations and age groups but most often with children who were younger than 12 years of age, and those with cerebral palsy. The main implementation facilitator was clinicians' motivation and the main barriers were related to resources and complexity of cases. Findings suggest that the implementation of new assessment tools is an ongoing process that should be monitored after initial training, in order to understand the clinical contexts in which the tools are being used.

Authors: Jael N. Bootsma, Kristine Stadskleiv, Michelle P. Phoenix, Johanna J. M. Geytenbeek, Jan Willem Gorter, Dayle McCauley, Sara Fiske, Fiona Campbell, Natasha Crews, Barbara Jane Cunningham

Teaching interprofessional collaboration among future healthcare professionals

Healthcare has become more complex in recent years. Such complexity can best be addressed by interprofessional teams. We argue that to ensure successful communication and cooperation in interprofessional teams, it is important to establish interprofessional education in health-related study programs. More precisely, we argue that students in health-related programs need to develop interprofessional competencies and a common language, experience interprofessional contact, build inclusive identities and establish beliefs in the benefit of interprofessional diversity. We give examples how these goals can be implemented in interprofessional education. We also discuss challenges and future avenues for respective research healthcare professionals.

Authors: Mathias Kauff, Thorsten Bührmann, Friederike Gölz, Liane Simon, Georg Lüers, Simone van Kampen, Olaf Andres Kraus de Camargo, Stefanus Snyman, and Britta Wulfhorst.

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

A study involving 130 mothers of school-aged children with autism, aged 6 to 13, found that during the COVID-19 pandemic, mothers wished to see a change in their child’s participation in 71% of the activities done both at home and in the community. It also found that mother's own participation in health-promoting activities had a positive association with their child's involvement in activities at home, but not in the community. For more information visit the ASPIRE website and/or access the full manuscript.

Author: Ziru Wang, Anat Golos, Jonathan A. Weiss, and Dana Anaby.