January 2018  


Welcome to the January edition of CanChild Today! We are thrilled to start the New Year with an issue full of good news and exciting announcements about the "F-words" in Childhood Disability, Transition research and more! We also invite you to attend an upcoming CP-NET webinar on social media for families of children with disabilities, and  congratulate our CanChild colleagues on recent achievements - including a very special announcement about our Co-founder, Dr. Mary Law! 

Please feel free to share CanChild resources and this newsletter 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!  
Upcoming Webinar! 


Finding Community: Social Media for Families of Children with Disabilities

Thursday, February 8 | 12:00pm - 1:00pm EST
Presented by Rachel Martens,
CanChild Family Engagement Facilitator

Disability is a culture of identity to which parents aren't given a handbook, and families of children with disabilities often experience significant stress and feelings of isolation. Social media can be an excellent tool for connecting with other families to share lived experience, support, resources and mentorship, while the accessibility of social media can bridge the barriers of geographic distance and rare diagnoses.

Join us for this free webinar as we discuss how to get started. We'll share some considerations you might not have thought about as you explore social media.

All information will be presented in plain language, and there will be an opportunity for audience questions.


"F-words" in Childhood Disability News!

New Video: "My Favourite Words"

Announcing " My Favourite Words" - a new video created by Instituto Nossa Casa in Brazil and adapted for an English audience by  CP-NET.

Learn what the " F-words" - Function, Family, Fitness, Friends, Fun and Future - mean to children with disabilities and their families!

English version produced with support from The Ontario Brain Institute.

View now!
 


"These Six F-words Won't Fill Up Your Swear Jar" 

We are thrilled to share that the CP-NET video "These Six F-words Won't Fill Up Your Swear Jar" is the 2017 IHDCYH Talks Video Competition Runner Up!

The competition recognizes short video projects that present a clear, evidence-based message designed to have a positive impact on the health of children, youth and families. 

Congratulations to the youth who shared their stories and helped people around the world understand what really matters to young people with disabilities!

This video was produced with support from the Ontario Brain Institute

Learn more about the 'F-words' in Childhood Disability


Transition News!

MyTransition App and ApplyIT Study

The  MyTransition App  is now available for free on the Apple and Google Play stores! The app was developed in collaboration between Dr. Jan Willem Gorter, Dr. Christina Grant, youth, families and care providers at McMaster Children's Hospital. The app is a virtual toolkit, funded by McMaster Children's Hospital Foundation, and provides a central location for young adults to track their transition, keep contacts in one place, and improve communication with their health care team. 

The  ApplyIT Study is evaluating the feasibility and the effectiveness of the MyTransition app in supporting youth moving from pediatric to adult healthcare. For more information, visit the  ApplyIT Study page

READYorNOT Study

The READYorNot Study is currently in phase one with the development of the MyReady App, in collaboration between Dr. Jan Willem Gorter, Dr. Ariane Marelli, Dr. Khush Amaria, the READYorNot project team, 360Medlink, youth, parents, and care providers. The app includes a curriculum of video testimonials, information and activities for youth to learn about and practice skills related to the transition process. Once completed, an intervention study to evaluate the app will take place in healthcare settings across Canada.  For more information, visit the READYorNot study page
Congratulations!

Mary Law Awarded Officer of the Order of Canada

Congratulations to Mary Law, Co-founder of CanChild, for being awarded the distinction 
Officer of the Order of Canada.

The Order of Canada is one of Canada's highest civilian honours, recognizing achievement and dedication to the community and service to the nation. Mary Law was recognized for her "transformative work in the field of occupational therapy, which has set the standard for research and shaped clinical practice in Canada."


Congratulations to Briano DiRezze who received an Early Career Award through the Hamilton Health Sciences. This award will allow him to further the development of the Autism Classification System of Functioning: Social Communication

Congratulations to Danielle Levac who received a K01 Mentored Research Scientist Career Development Award through the NICHD. This award will allow her to further her research in the area of virtual environments as a rehabilitation intervention for children with CP.
Get Involved in Research 

MyStory Study


CP-NET researchers are looking for young adults living with CP in Ontario, between 16-30 years of age, for the MyStory Study. We are investigating overall health and brain behaviour relationships through three methods.
 
Part 1:  Surveys and optional hair sample testing
Part 2:  MRI brain scan session at St Joseph's Hospital
Part 3:  EEG brain activity session at McMaster University
 
For completion of each part, we will provide a $20 Indigo/Coles/Chapters gift card as a thank you for your time. If you are interested in hearing more about this study, please contact Helena Viveiros. 
 
Study Email:  cpnet@mcmaster.ca
Office Phone: 905-525-9140 ext. 27849
Toll Free Line for Leaving Messages: 1-844-572-7096

Recent Publications by CanChild Members
Development of an inventory of goals using the International Classification of Functioning, Disability and Health in a population of non-ambulatory children and adolescents with cerebral palsy treated with botulinum toxin A
Children and adolescents diagnosed with cerebral palsy (CP) often receive botulinum toxin A (BoNT-A) treatment to help reduce muscle tone. Current research on the use of BoNT-A treatment in non-ambulatory children and adolescents with CP is scarce and may not incorporate the perspectives of the family. Goals identified by primary caregivers can help tailor treatment plans and improve health outcomes. A previous draft inventory of goals was developed by a group of healthcare professionals at a national botulinum toxin conference. This study aimed to develop and refine the inventory list of goals. Twenty parents were asked to select goals from the draft inventory that they would like their child to accomplish after receiving BoNT-A treatment and provide new goals that were not listed in the inventory. All parents identified body structure and function goals, such as reduced muscle tone, and activity goals, such as ease of caregiving. Few parents identified participation goals. Healthcare professionals were also asked to provide feedback on the inventory, including new goals and phrasing of goals. The inventory of goals may be a helpful tool to facilitate a goal-setting discussion between healthcare professionals and families about BoNT-A treatment. 
Authors:  Nguyen L, Mesterman R, Gorter JW. BMC Pediatr. 2018 Jan 4;18(1):1. doi: 10.1186/s12887-017-0974-x.

Mental disorder in children with physical conditions: a pilot study
Mental disorders disproportionately affect children and young people with chronic physical conditions in comparison to their peers. The methodological purpose of this prospective pilot study was to assess the feasibility of recruiting participants with both mental disorder(s) and physical condition(s) (ie, multimorbidity), as well as the extent of missing data in studying mental disorder among children newly diagnosed with physical conditions. The substantive purpose was to examine the initial prevalence of multimorbidity in newly diagnosed children, identify sociodemographic links and explore the effect of multimorbidity on child quality of life and parental psychosocial outcomes over 6 months of follow up. Methodological and substantive findings from this pilot study have been used to inform a larger study of multimorbidity in children.  Authors: Butler A, Van Lieshout RJ, Lipman EL, MacMillan HL, Gonzalez A, Gorter JW, Georgiades K, Speechley KN, Boyle MH, Ferro MA. BMJ Open. 2018 Jan 3;8(1):e019011. doi: 10.1136/bmjopen-2017-019011.
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