July 2018  

Welcome to the July edition of  CanChild Today! In this issue, we are excited to share some special news and highlight a webinar recording, survey,  and four recent publications by some of our  CanChild members

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We want YOUR feedback!

The World Health Organization (WHO)'s International Classification of Functioning, Disability and Health (ICF) Framework describes health and disability. It offers a holistic strengths-based model for describing what people CAN do. The F-words: Fitness, Function, Friends, Fun, Family and Future are embedded into this framework. Families and youth have identified the F-words as a lay-friendly, easy-to-understand way of using ICF concepts.

To share the F-words, and educate the public about what youth with disabilities CAN do, a group of young adults with disabilities created the F-words Video for Youth. We would like your feedback about the video and the F-words concepts- if you liked/disliked it, if it changed your view of disability and the F-words, and what we can improve for future videos.
Please take 2 minutes to complete the  survey after watching the video. 
Thank you for your feedback! 

A huge congratulations to Peter Rosenbaum, Laura Miller, Andrea Cross, Steven Hanna, Christine Imms, Jenny Ziviani, Vicki Cavalieros, and Rachel Martens for receiving a CIHR grant titled:  ENVISAGE: ENabling VISion And Growing Expectations. A Program to Support Parents of Children Newly Diagnosed with A Neurodisability  (2018 - 2021: $379,000 CAD).

New Webinar Recording!

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Selective Dorsal Rhizotomy (SDR)

CP-NET Webinar presented on June 12th, 2018 by parents Christine and Larry Marion, Dr. Golda Milo-Manson, Dr. George Ibrahim, and Marilyn Wright. 
Moderated by Dr. Jan Willem Gorter

A Selective Dorsal Rhizotomy (SDR) program has started in Ontario! The program is run by The Hospital for Sick Children and Holland Bloorview Kids Rehabilitation Hospital in Toronto, and is supported by the Ministry of Health and Long-Term Care. This program is offered to children diagnosed with cerebral palsy (CP) who have goals to improve standing, walking, or running. 

This webinar highlights frequently asked questions and practical information about all the steps before, during, and after surgeryAll information is presented in plain language by a panel that includes parent, doctor, therapist, and researcher perspectives.

Recent Publications by CanChild Members!
This article discussed the development and implementation of @home: a project which consists of home consultations by a specialized team working with children aged 0-5 years at a rehabilitation centre in the Netherlands. This article shared the experiences of families and service providers with home consultations as a part of family-centered services (FCS). After interviewing experts, adjusting current rehabilitation trajectories, and service providers offering consultations to children at home, this study concluded that service providers found that it was more valuable to offer home consultations rather than seeing the child at the rehabilitation centre. According to parents and service providers of this study, home consultations provided more tailored advice, perceived a more equal partnership between service professionals and parents, and provided a good natural therapeutic environment where children could perform best and be themselves. Authors:  van Maren-Suir I, Ketelaar M, Brouns B, van der Sanden K, Verhoef M. Child Care Health Dev. 2018 May 7. doi:  10.1111/cch.12573

Universal design for learning (UDL) is a framework that promotes inclusion of all children in the classroom, as it provides guidelines to support children with diverse needs. The objective of this review was to not only summarize how UDL is described in rehabilitation literature, but to also provide a broad understanding of how rehabilitation health professionals (RHPs) describe and implement UDL-aligned services in classroom settings. Literature from occupational therapy, physiotherapy, and speech-language pathology was specifically chosen for this study. This review concluded that UDL is a promising framework that can be beneficial for RHPs, as it provides guidance and support on how to support children with diverse needs in school settings. However, there is a need for more research on the effectiveness of UDL, as implemented by RHPs, and to examine the role of physiotherapists with UDL-type services.  Authors:  Kennedy J, Missiuna C, Pollock N, Wu S, Yost J, Campbell W.  Child Care Health Dev. 2018 June 5. doi:  10.1111/cch.12576

When patients are involved throughout the research process in various roles, it is collectively referred to as patient engagement. There is a greater need for patient engagement in healthcare research in Canada and around the world, especially evidence regarding the best strategies for developing and supporting research partnerships with patients and caregivers.  This research commentary studied qualitative research perspectives to generate ideas that researchers can use to facilitate patient engagement in research. The article outlines key areas where qualitative research perspectives can be useful to help address concerns with patient engagement in research.  Authors: Phoenix M, Nguyen T, Gentles SJ, VanderKaay S, Cross A, Nguyen L. Research Involvement and Engagement. 2018 July 2. doi:  10.1186/s40900-018-0107-1

To manage hypertonia, children and adolescents with cerebral palsy (CP) often receive botulinum toxin A (BoNT-A). The objective of this study was to describe and categorize the effects of BoNT-A that parents observed using WHO's International Classification of Functioning, Disability and Health (ICF) framework. This study used semi-structured interviews with the parents of non-ambulatory young people with CP, who received BoNT-A. The parents reported the effects of BoNT-A on each ICF category. An overall theme emerged using this methodology with a number of sub-themes, providing some insight into parents' journeys with the effects of BoNT-A for children and youth with CP.  Authors:  Nguyen L , Di Rezze B , Mesterman R , Rosenbaum P , Gorter JW . Child Care Health Dev. 2018 July 24. doi:  10.1177/0883073818786567

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