Dear CanChild,

Welcome to the March 23rd edition of CanChild Today! In this newsletter, we highlight WordDay Brazil 2023, new F-Words translation, a CanChild radio feature, upcoming research round on youth engagement, the FOCUS clinical tool, research opportunities, and summaries of recent publications.

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WordDay is a worldwide initiative to raise awareness about rheumatic diseases in childhood. CanChild Co-Director Dr. Olaf Kraus De Camargo had the opportunity to attend and speak at this fantastic event, for the first time in Brazil.

In his blog, Dr. Olaf wrote: "We listened to professionals, parents, and patients who addressed aspects of treatment, guideline developments, treatments, shared decision-making, personal stories, and the importance of support networks."

The concept of the F-words developed by CanChild Co-Founder Dr. Peter Rosenbaum and CanChild Scientist Dr. Jan Willem Gorter has been adopted by a working group of the German Society for Social Paediatrics and Adolescent Medicine. The group recently initiated a series of continuous professional education in the journal “Kinderärztliche Praxis” and contributed to several translations of the F-words tools and principles of family-centred care on the German-language section of our website

Handi-Link radio program explores all sides of disability, comparing and contrasting with able bodied life. This episode features CanChild Co-Director Dr. Briano DiRezze, who provides a brief introduction to CanChild. Tune in and share this episode with someone you know!

"Nothing About Us Without Us”: Strategies for Equitable and Meaningful Youth Engagement

March 29^th from 7:00-8:00pm EST

In this research round, CanChild’s Youth Engagement in Research team shares their research and experience engaging in patient-oriented research, which pushes back against the inherent ableist foundations of research. They will also provide practical takeaways for parents, youth, and researchers on engaging in accessible and equitable research.

What is the FOCUS clinical tool?

Focus on the Outcomes of Communication Under Six (FOCUS ©) is a clinical tool designed to evaluate change in communicative-participation in preschool children.

‘Communicative participation’ is the child’s communication and interaction in “real world” situations at home, school, or in the community.

Learn more about FOCUS:

Researcher Kinga Pozniak shares how families are involved in creating the COVID Time Capsule study:

If you have a child between 8-21 who has a disability…

Researchers at CanChild Centre for Childhood Disability Research, McMaster University invite both you and your child to participate in a research study about your experiences during COVID and ideas about improving health and education services and supports. We will work with each family to figure out a way for all youth and parents to share their stories in a way that works for them. For more information, email Anna Swain at minchena@mcmaster.ca.

Do you want to participate in more CanChild research?

• Transition to Adulthood During COVID-19 Research: Recruiting Canadian youth (ages 16-24) with special healthcare needs to participate in an online interview. Recruitment ending soon!
• Seeking occupational therapists in Ontario to explore the ethical tensions experienced during the transition from traditional pull-out approaches to tiered service delivery in school-based occupational therapy, and to identify the appropriate practice support needs. Contact Sandra VanderKaay at vandes22@mcmaster.ca
• We are interested in your perceptions about the barriers and facilitators to using the Computer Based Instrument for Low Motor LanguageTesting (C-BiLLT) in Canadian clinics and with Canadian children who have CP. Focus groups will be virtual and will be approximately 2 hours. Participants will be compensated. If you are interested, please contact Sarah Hopman at: hopmansn@mcmaster.ca

Health professional-educator collaboration in the delivery of school-based tiered support services: A qualitative case study. 

This participatory action research study explored how an interprofessional team worked with educators to develop and implement tiered services in two school communities. Data collected in this qualitative case study included weekly logs written by the interprofessional team members and 16 interviews conducted with team members, parents, educators, and administrators. Findings showed that the team provided a variety of services to individual students, groups, whole classes, and the school community. Collaboration and communication were needed to define roles and expectations, and to plan and share student information. Benefits included timely service, capacity building, and student goal achievement. Barriers were related to service fragmentation, time, and workload and suggest the need for clearer direction about expectations and improved coordination within the systems that offer services.

Phoenix, M., Dix, L., DeCola, C., Eisen, I., & Campbell, W. (2021). Child: Health, Care and Development, 47(3), 367-376. doi: 10.1111/cch.12849

*Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study.

This study examined the relationship between social support and quality of life (QoL) in caregivers and children with developmental disabilities (DD) and typical development (TD) during the COVID-19 pandemic. 52 caregivers of children with DD and 34 with TD participated remotely. The authors found that although both groups had similar levels of perceived social support, there were significant differences in QoL between them. Children with DD had lower QoL scores in several domains, while caregivers of children with TD had lower scores in different domains. Greater levels of perceived social support were associated with higher QoL scores in some domains for both groups, but these associations were more numerous for families of children with DD. This research provides important insights into the relationships between perceived social support and QoL during the COVID-19 pandemic, particularly for families of children with disabilities.

Da Costa, I. G. R., Brugnaro, B. H., Lima, C. R. G., Kraus de Camargo, O., Fumincelli, L., Pavão, S. L., & Rocha, N. A. C. F. (2023). International Journal of Environmental Research and Public Health, 20(5), 4449. doi: 10.3390/ijerph20054449

*Open Access