Dear CanChild,

Welcome to the November 24th edition of CanChild Today! We are excited to share updates about the CP-NET Photo Contest, Lukes Legacy Family Research Rounds, research opportunities, CanChild member news, and summaries of recent publications.

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.

CP-NET is hosting a photo contest to showcase participation of individuals with cerebral palsy! Take a look at all the photos submitted by families of children with cerebral palsy and vote on your two favourites!

The voting will close on December 2nd at 4:00pm Eastern Time.

Winners of the photo contest will be announced on December 3rd, so make sure to cast your vote and share with friends and family! Subscribe to the CP-NET newsletter for the announcement.

Questions? Contact Alice Soper at sopera@mcmaster.ca. 

Join us for our next Lukes Legacy Family Research Rounds on November 29 at 7pm EST. The talk is titled: Weathering the Storm: Addressing the Complex Issue of Aggression Toward Families / Caregivers in Childhood and Adolescence (AFCCA).

Meet the Speakers:

• Maude Champagne, Neurosciences Ph.D., Registered Social Worker and Psychotherapist
• Tracy Moisan, Program Director for the National Consortium on AFCCA

Are you a family member (parent, grandparent, etc.) or caregiver (including kinship care, foster care) of a child with an exceptionality or what the health community considers a disability? Have you tried to access supports in school, at home or in the community to support your child’s development? 

Please take 15 minutes to help improve health care!

All children and youth with exceptionalities deserve access to the best care. We would love to engage with you around how to feel safe and connect with resources you trust.

Our goal with this study is to build connections to improve access and safety of supports and resources for you and your child. 

Click the links to find out more about this study and take part in the survey!

Eligible participants can enter a draw for a $40 gift card.

WHO: Children and youth across Canada ages 8 to 21 with any type of disability, and their parent/caregiver. 

WHY: We want to hear about your experiences during COVID and your ideas about what services and supports families need moving forward. 

WHAT: Parent/caregiver will participate in a 1-hour virtual interview. We will work with each child/youth and their parents to figure out the format that works for you! Child/youth can complete a visual Covid Time Capsule (either online or in hard copy) and then participate in a 30-60 minute virtual interview to tell us about it. Each child/youth and parent/guardian will receive a small honorarium. 

WHERE TO LEARN MORE: Contact Anna Swain at minchena@mcmaster.ca or visit our website linked below.

Western University is currently recruiting Canadian parents/guardians and rehabilitation health professionals of children with Cerebral Palsy and complex communication needs to complete a survey about a new assessment tool called the Computer-Based Instrument for Low Motor Language Testing (C-BiLLT)!

For clinicians: The purpose of the survey is to help us understand the current language comprehension assessment practices and needs.

For parents/guardians: The purpose of the survey is help us understand your experiences and needs related to assessment of children’s language comprehension.

The survey is anonymous and can be completed online. If you are interested, please see click on the buttons below, or you can email the Research Coordinator, Sarah, at hopmansn@mcmaster.ca. Thank you!

Do you want to participate in more CanChild affiliated research? Current projects include:

• MPOC 2.0: Recruiting pediatric healthcare providers and caregiver of children with disabilities across Canada to provide feedback on a new tool.
• ENVISAGE-SP Program: Recruiting service providers of children with neurodevelopmental disabilities in Canada and Australia to review online workshop materials.
• Transition to Adulthood During COVID-19 Research: Recruiting Canadian youth (ages 16-24) with special healthcare needs to participate in an online interview.

For more information and to view more ongoing studies, click the button below:

Congratulations to the Class of 2022 Rehabilitation Science Program graduates!

Jael Bootsma completed her PhD, under the supervision of Jan Willem Gorter.

Linda Nguyen completed her PhD, under the supervision of Jan Willem Gorter. She also received the Excellence in Rehabilitation Science Research Award.

Kajaani Shanmugarajah completed her MSc, under the supervision of Briano Di Rezze. She was also awarded the Academic Excellence in the Masters of Rehabilitation Science Program.

Exploration of the Feasibility of Remote Assessment of Functioning in Children and Adolescents with Developmental Disabilities: Parents’ Perspectives and Related Contextual Factors.

The COVID-19 pandemic interrupted face-to-face health services, while increasing opportunities for telehealth strategies. The aim of this study was to learn, from a parent’s perspective, if remote assessment of functioning in children with developmental disabilities was feasible. Parents of children with developmental disabilities completed a remote assessment via electronic forms and telephone interview. The authors analyzed parents’ perspectives about the feasibility of the assessment. They also tested the association between feasibility score and sociodemographics/pandemic experience. A total of 57 mothers took part in the study and more than 95% did not report difficulties in responding to the electronic forms. Over telephone interviews, mothers reported the remote assessment as easy and feasible. Greater feasibility rates were related to younger mothers. Overall, remote assessment showed to be feasible. These results can guide the next steps in remote clinical practice and research.

Authors: Brugnaro, B. H., Vieira, F. N., Fernandes, G., de Camargo, O. K., Fumincelli, L., de Campos, A. C., Pavão, S. L., & Rocha, N. A. C. F. (2022). International Journal of Environmental Research and Public Health, 19(22), 15101. doi: 10.3390/ijerph192215101

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research.

The authors used a codesign approach to identify aspects of the research process where challenges might arise between researchers, patients, and families and then developed four videos with scenarios that mimic these challenges. Codesign is a collaborative approach in which different perspectives and relationships are prioritized while working to achieve a common goal. First, researchers, youth with disabilities, families, and trainees each identified challenges they had previously experienced in research engagement. These challenges were used to create a common scenario for each video. In follow up interviews, a subgroup of those who took part (7 out of 13 people) shared about their experience in the co-design process, as well as what it means to engage in research where all parties feel supported and valued. Participants said that being invited to partner on research teams needed to be more than just a ‘tick box’. Engagement felt like a ‘rubber stamp’ when they were asked to contribute in a narrow way that did not align with the fullness of their lived experience, skills, and interests. Clear communication and mutual expectations were important for engagement to happen in a way that felt supportive and valuable. The authors suggest that researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together.

Authors: Micsinszki, S. K., Tanel, N. L., Kowal, J., King, G., Menna-Dack, D., Chu, A., & Phoenix, M. (2022). Research Involvement and Engagement, 8(1), 60. doi: 10.1186/s40900-022-00398-y