Dear CanChild,

Welcome to the January 26th edition of CanChild Today! We are ecstatic to share recent Cerebral Palsy advocacy news, CanChild shop updates, research opportunities, and plain language summaries of recent publications.

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The Cerebral Palsy Foundation recently announced that the community has made a significant impact on the 118th Congress. Through their efforts, they were able to secure the strongest appropriations language yet for Cerebral Palsy (CP) research focus at the National Institutes of Health (NIH) across the lifespan.

The 2023 NIH Appropriations language, which has now been passed into law, encourages NIH to continue to prioritize and invest in research on CP. This includes basic and translational discoveries, as well as implementation, observational, and clinical studies aimed at early detection and intervention, comparative effectiveness, and functional outcomes.

The language also encourages NIH to support greater investment in research focused on the areas in need of growth. This includes research on lifespan issues to address the needs of transition age youth and adults with CP, and research to support the development and delivery of new and improved screening tools, treatments, and interventions.

Additionally, the agreement encourages NIH to consider research opportunities focusing on the motor and health benefits of physical activity specifically for individuals with CP across all Gross Motor Functional Classification levels. This is vital to help prevent chronic disease and premature aging.

This is a major victory for the CP community! We are excited for the potential impact this will have on improving the lives of individuals living with CP and their families.

Explore the array of proven and validated measures, tools, and services on the CanChild Shop! Revenue from the CanChild Shop is reinvested into research and knowledge translation activities to improve the lives of children and youth with disabilities and their families.

Plus, several of our products are now available in multiple languages including French, Simplified Chinese, Arabic, Spanish, and Russian!

The purpose of the study is to explore the ethical tensions experienced by occupational therapists transitioning from traditional pull-out approaches to school-based occupational therapy to tiered service delivery, and to identify the appropriate practice support needs for addressing ethical tensions.

We are seeking occupational therapists who self-identify as: (a) registered in Ontario, (b) working in a school-based occupational therapy context that is transitioning or transitioned to a tiered model, (c) comfortable answering potentially sensitive questions about ethical tensions in practice, (d) willing to critically reflect on and explain ethical decision-making including identifying any required supports, (e) and English speaking.

Participation will involve a one-to-one interview either in person, on Zoom, or by telephone. In addition, participants will be invited to attend one member-checking focus group. Your participation in the study is entirely voluntary and you can withdraw at any time.

Please contact Sandra VanderKaay at vandes22@mcmater.ca if you have any questions or are interested in participating in the study.

Share your experience transitioning from pediatric to adult healthcare services during the pandemic

We are looking for youth with special healthcare needs (diagnosed with a disability or chronic physical/mental health condition):

- Between the ages of 16-24

- Living anywhere in Canada

- To participate in an online interview (alternative formats available to ensure accessibility)

Contact Barb Galuppi (galuppi@mcmaster.ca) to participate in this research study

Partage ton expérience de transition des services de santé pédiatriques aux services pour adultes durant la pandémie.

Nous recherchons des jeunes ayant des besoins spéciaux en matière de soins de santé (diagnostiqués avec un handicap ou avec un problème de santé chronique soit physique, soit de santé mentale).

- Âgés entre 16 et 24 ans

- Vivant n'importe où au Canada

- Pour participer à une entrevue en ligne (formats alternatifs disponibles pour faciliter l'accessibilité)

Pour participer à cette étude, contacte Barb Galuppi (galuppi@mcmaster.ca)

Do you want to participate in more CanChild research?

• Inviting families with children between 8-21 who have a disability to participate in a study about their experiences during the COVID pandemic and ideas on improving health/education services and supports. For more information, email Anna Swain at minchena@mcmaster.ca
• Adolescents and young adults with cerebral palsy, and their healthcare providers: We want to explore the influence of sexuality and gender on the health care transition. Interested? Contact us at lbrunto3@uwo.ca or usalma@uwo.ca

A scoping review of virtual synchronous intervention studies in preschool rehabilitation. 

This study looked at previous research on using virtual technology, such as Skype and Zoom, to provide rehabilitation services for preschoolers. The authors found 16 studies that were relevant and most focused on helping preschoolers with language difficulties or disorders. Most services were delivered on a weekly basis using technological tools and activities to keep preschoolers engaged. Findings can help guide best practices in virtual care for clinicians. Future research could explore the best ways of measuring the outcomes of virtual interventions and the effectiveness of different session lengths and frequencies for children with different strengths and challenges.

Hatherly, K., Glista, D., Testani, D., Brunton, L., & Cunningham, B. J. (2022). Disability and Rehabilitation, 1–9. doi: 10.1080/09638288.2022.2157054

Toward Participation-Focused School-Based Occupational Therapy: Current Profile and Possible Directions.

This research examined how Occupational Therapy (OT) services are used to help students with physical disabilities participate fully in mainstream schools. It examines the real-life practices of eight OTs in a Canadian province, and uses interviews and analyses of 16 charts to understand how these services are provided. The study found that OT services mostly focus on structured or academic activities rather than unstructured or social ones. The authors also identified two main themes in the therapy practices, which are resources and the impact of OT. The study suggests that in order to help students with physical disabilities participate fully in school, OT services may need more resources and a greater focus on social activities. Additionally, the study suggests that OT services could benefit from efforts to collaborate and promote the profession in the school setting.

Bonnard, M., Hui, C., Manganaro, M., & Anaby, D. (2022). Journal of Occupational Therapy, Schools, & Early Intervention, 1–18. doi: 10.1080/19411243.2022.2156427