The CAPA 2022 symposium aims to gather and engage with health professionals, researchers, people with lived experience of disability, and other stakeholders. The goal is to identify the key research questions that need to be answered to generate evidence-based knowledge about the benefits of participation to maintain or promote health and wellbeing, and increase efficiency in the service delivery system of welfare, social and health care services.

The symposium themes aim to challenge our thinking and build collaborative efforts towards optimizing participation for all:

Youth Podcast: Created in collaboration between the Ontario Brain Institute, CP-NET and EpLink, hear from three young adults about the benefits of youth participation in research, the impact of community involvement in research and leaving a data legacy.

Guests:

Are you a parent in Ontario? Consider filling out the online research survey “Transitions to Adulthood: Is your child ready?” to help researchers learn about youth readiness for adulthood!

CanChild's Concussion Management brochures are fabulous resources for parents, physicians and community agencies. These informative, evidence-based brochures provide facts about concussions, including symptoms and a clear plan for return to regular activity.

The Concussion Management brochures are available for free download on the CanChild website or by ordering them from the CanChild Store. By ordering them from the store you will receive glossy printed versions that are attractive for display and distribution. The charge for glossy printed brochures will cover production costs.

Furtado, M. A. S., Sousa Junior, R. R., Soares, L. A., Soares, B. A., Mendonça, K. T., Rosenbaum, P., Oliveira, V. C., Camargos, A. C. R., & Leite, H. R. (2022). Analysis of Informative Content on Cerebral Palsy Presented in Brazilian-Portuguese YouTube Videos. Physical & Occupational Therapy In Pediatrics, 1–15. https://doi.org/10.1080/01942638.2022.2046677

This study described the characteristics of the most viewed YouTube videos in Brazilian-Portuguese on cerebral palsy (CP) and analyzed the content of informational videos about CP. Searching on YouTube was conducted independently by two examiners using the keywords “Paralisia Cerebral”. The content analysis found that 37 informational videos presented multiple topics about different aspects of CP, had good quality, and generally had good flow. Assessed by a modified Discern checklist and the Global Quality Score, this group of videos has moderate trustworthiness due to the lack of evidence-based content. Overall, informational videos are useful for patients and healthcare providers. However, it is necessary to include scientific evidence to promote knowledge translation.

Cahill, P. T., Ferro, M. A., Campbell, W. N., & Ronen, G. M. (2021). Self‐esteem mediates mental health outcomes in young people with epilepsy. Epilepsia, 62(9), 2072–2081. https://doi.org/10.1111/epi.17006

A recent study, part of a longitudinal patient-reported outcome measurement program for young people with epilepsy, evaluated the degree to which self-esteem impacts mental health in young people with epilepsy. The study assessed 480 young people with epilepsy and their families five times over 28 months. In these visits, data on clinical seizure burden, cognitive comorbidity, peer and parental support, self-esteem, and self-reported mental health symptoms were collected. Using complex statistical analyses, the study found evidence that self-esteem mediates the impact that both clinical seizure burden and peer support have on mental health outcomes. As such, assessment of and interventions targeting self-esteem may be appropriate for young people with epilepsy.

Letzkus, L., Fehlings, D., Ayala, L., Byrne, R., Gehred, A., Maitre, N. L., Noritz, G., Rosenberg, N. S., Tanner, K., Vargus-Adams, J., Winter, S., Lewandowski, D. J., & Novak, I. (2021). A Systematic Review of Assessments and Interventions for Chronic Pain in Young Children With or at High Risk for Cerebral Palsy. Journal of Child Neurology, 36(9), 697–710. https://doi.org/10.1177/0883073821996916

In this systematic review, six scientific articles on chronic pain in children with or at high risk for cerebral palsy (CP) were comprehensively evaluated. Three drug-based interventions (gabapentin, medical cannabis, botulinum toxin type A) and one non-drug related intervention were identified. An online survey was then delivered using social media to understand parent preferences. The survey reported parent-comfort, where non-drug related interventions ranked as most preferable. Overall, there is not enough evidence to recommend the use of these four interventions for chronic pain in children with CP. More clinical trials are needed to assess the safety and effectiveness of these interventions.