The F-words Knowledge Translation and Research team is looking for photos of children and families to include in F-words-related workshops, presentations, study recruitment, and dissemination materials.

Moving forward with our F-words work, we hope to feature images that represent the incredible families we work with, directly and indirectly, via the impact of the F-words! If you are interested in sharing some captured moments, please read the photo release form for more information.

Rachel Martens, CanChild’s Research Engagement Strategist, wrote an article for CBC parents where she talked about her dual role as a mother caring for a beautiful boy with special needs and an advocate challenging a fractured system for kids with disabilities and their families.

Rachel also shared how a collaborative community became her second home. “I found a space in patient-oriented research, where lived experience lends strength and real-life applicability to science, meant to support disabled kids like my son,” she mentioned.

Watch the CP-NET Webinar on Patient Engagement in Research: the value and impact of genuine partnerships. The Family Engagement in Research teaching team presented what genuine patient and family engagement in research means. Five CP-NET research platforms also shared their experiences with patient engagement in research, and a young adult with CP discussed his perspectives on patient engagement.

The ASSIST team, led by Dr. Penny Corkum at Dalhousie University, and comprised of health and education researchers and practitioners, are recruiting 300 Canadian teachers to test the ASSIST program - a collection of evidence-based intervention for inclusive classrooms. It is eLearning that is self-paced and provides resources to support students with attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and learning disabilities (LD). 

ASSIST has already been tested by over 140 Canadian teachers who reported reduced stress, increased knowledge, higher confidence, and overall program satisfaction of 4.7 out of 5. The students were reported to have reduced core symptoms and improved quality of life at school.

The deadline for registration has been extended until April 12^th, 2021.

MyREADY TransitionTM BBD App is a mobile device app designed to educate youth as they prepare to transition from pediatric to adult care. The interactive software offers sessions with videos and games to help them practice and learn ways to set goals and manage their health. This randomized controlled trial (RCT) aims to determine if the app will result in greater transition readiness than the usual care for youth with brain-based disabilities. Another goal of this RCT is to understand the experiences of youth, their parents/caregivers, and healthcare providers using the app. Recruitment is ongoing for youth (15-17 years old) in Ontario, Alberta, New Brunswick and Nova Scotia. Authors: Gorter JW, Amaria K, Kovacs A, Rozenblum R, Thabane L, Galuppi B, Nguyen L, Strohm S, Mahlberg N, Via-Dufresne Ley A, Marelli A; CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Trial Study Group. BMJ Open. 2021 Mar 26;11(3):e048756. doi: 10.1136/bmjopen-2021-048756.

Children and adolescents with cerebral palsy (CP) who participated in this study shared valuable information that led to the development of strategies to facilitate their involvement as partners in research. Data from focus groups and interviews yielded four themes that described the participants' perspectives: insider knowledge, reasons for involvement, roles in research, and facilitating partnership. Acknowledging the expertise of children and youth with CP gained through lived experience as well as employing strategies to open communication, flexibility, and support are facilitators to effective research partnerships with younger populations. Authors: Cavens C, Imms C, Drake G, Garrity N, Wallen M. Disabil Rehabil. 2021 Mar 28. doi: 10.1080/09638288.2021.1900927.

Bob was a 9-year old boy who participated in two summer camps, one in which he disclosed his autism and the other he did not. This case study evaluated how disclosure may influence peer engagement and understanding of children with autism in community recreation programs. Data showed that Bob had more joint engagement and reciprocal interactions with his peers after telling them about his autism and explaining his behaviours compared to the nondisclosure condition. The results provided preliminary evidence to support the use of a simple disclosure protocol for families who want to disclose within short-term community programs. This study was financially supported by CanChild's 2018 internal research grant competition. Authors: Fan L, Shire S, Couture M, Zwaigenbaum L, Thompson-Hodgetts S. Disabil Rehabil. 2021 Mar 26:1-12. doi: 10.1080/09638288.2021.1904012.