March 2020    


Welcome to the March edition of  CanChild Today! In this issue, we want to update you on the impact of COVID-19 to the research and activities of CanChild. Featured in this newsletter are new online resources, research opportunities, and recently published work by some of our members.

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CanChild Research Update!
Visit  McMaster Daily News for the latest information and updates on COVID-19.
The CanChild team has been closely monitoring information coming from our study sites, government and public health agencies. In an attempt to reduce the spread and transfer of COVID-19, all research under CanChild will follow the guidelines set out by the approval institutions and Research Ethics Boards.
Any research that includes in-person contact has been halted until further notice. Research under CanChild will continue if it can be completed remotely and follows existing physical distancing guidelines. We also understand that everyone is impacted by the current circumstance and may not have the resources to engage in research at this time. We are all working hard to ensure our projects continue to move forward and are ready to resume once we are able to safely meet in-person.
 
If you have any questions, please contact
canchild@mcmaster.ca   or your study contact person.
 
We are thinking of you, our CanChild community, and want to thank you for your understanding as we navigate through this difficult time. Wishing you all the best.

Concussion Event - Postponed!


FER Course: Knowledge Translation Projects!
The Winter 2020 cohort of the CanChild, McMaster University, and Kids Brain Health Network Family Engagement in Research Certificate of Completion Program has just finished and there are now 100 graduates across Canada and internationally. Working in pairs, family partners and researchers have produced a total of 50 research partnership knowledge translation (KT) tools for use by patient-oriented research teams. Please visit the FER Course website to view some fabulous KT tools that are ready to be disseminated in your communities.
Call for Recruitment!
ENabling VISion And Growing Expectations (ENVISAGE) Research Study

Contemporary 21st century ideas about health and disability are changing the way we think, act, and talk about childhood disability. These ideas have been 'packaged' into a program of five interactive workshops for parents.  We are looking for parents or caregivers of children under six years old with a neurodevelopmental disability to participate in our study that aims to assess the impact of ENVISAGE workshops on parents' well-being and their sense of confidence, family functioning, and empowerment. April sessions are full, but spaces are still available for June. 

If you want to join, please contact:
Debbie Hughes (Canada):  envisage@mcmaster.ca 
Abha Balram (Australia):  envisage@acu.edu.au  
or visit the  ENVISAGE webpage.


BrothErs and Sisters involvement in health care TranSition for youth wIth  Brain-based disabilitieS (BEST SIBS) Study

Are you a sibling of a brother or sister with a disability? You have a voice too! We are looking for siblings (ages 14 to 25) to take part in a research study to understand their experiences with their brother or sister with a brain-based disability (i.e., autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder or spina bifida) who is in high school and preparing for health care transition in Ontario. We would like to learn more about siblings' roles and responsibilities in supporting their brother or sister in preparing for the transition from pediatric to adult health care services. 

Sibling participants will be asked to take part in an interview and bring photographs that describe their sibling relationships. Interviews can be conducted by telephone or online through Zoom.

For more information, please contact  NGUYEL7@mcmaster.ca or watch the  BEST SIBS recruitment video!


Better Nights, Better Days for Children with Neurodevelopmental Disorders 
(BNBD-NDD)


Up to 90% of Canadian children with neurodevelopmental disorders (NDD) experience insomnia symptoms including trouble falling asleep, staying asleep, and/or waking too early. The good news is that for the majority of children with NDD, these sleep problems can be treated through psychological interventions!

Better Nights, Better Days is looking for primary caregivers of children aged 4-12  with sleeping problems who have been diagnosed with ADHD, Autism Spectrum  Disorder, Cerebral Palsy or Fetal Alcohol Spectrum Disorder to participate in a  sleep study. Visit  http://ndd.betternightsbetterdays.ca/  for eligibility information.


Share your Ideas!

CHILD-BRIGHT is looking for ideas about what particular questions, issues, and needs they should address in the network's next phase. Please share your thoughts by filling out a short survey
The deadline to provide feedback is April 6, 2020.
Resource Available in Dutch!
The Dutch version of Developmental Coordination Disorder (DCD) online workshop is now available on the CanChild website!  The online workshop is designed to increase your knowledge about motor coordination challenges and to help you be more confident in supporting a child's development and participation. Visit our Dutch Hub to learn more!
Recent Publications by CanChild Members!
Service providers are using the "F-Words in Childhood Disability" (Fitness, Function, Friends, Family and Fun) as a conceptual framework, directly in practice and in teaching or training. While there is considerable uptake of the "F-words," service providers have experienced barriers including conflicting attitudes of families and colleagues, insufficient funding, lack of translations, and misalignment with organizational and government priorities. To overcome barriers and support implementation, this study recommends four knowledge translation strategies: (1) involve local opinion leaders or professionals who are educationally influential, (2) use linkage and exchange to collaborate and share information between researchers and knowledge users, (3) train service providers with the intent of influencing practice, and (4) distribute online or printed tools, resources and guidelines. Authors: Soper AK, Cross A, Rosenbaum P, Gorter JWDisabil Rehabil. 2020 Feb 28. doi: 10.1080/09638288.2020.1729873

This systematic review  examined the effects of following Return to Activity (RTA) and Return to School (RTS) protocols on  clinical outcomes for children (5-18 years old) with concussion. Twelve subquestions regarding the  effectiveness of concussion RTA or RTS protocols and evidence supporting rest, exercise and  school recommendations were assessed. The current evidence, identified in this review, supports  the recommendation that children should undergo 24 to 48 hours of physical and cognitive rest  until they initiate a graduated RTA or RTS protocol. In addition, this review highlights recommendations  against prolonged rest which can worsen symptoms or increase recovery time  for children in the acute phase of concussion recovery. Authors: DeMatteo CBednar ED, Randall S, Falla K. BMJ Open Sport Exerc. Med. 2020 Feb 6. doi: 10.1136/ bmjsem-2019-000667

On average, the level of participation satisfaction in adolescents (12-18 years old) with Cerebal Palsy (CP) was higher compared to their level of participation accomplishment. However, data from 50 respondents show disassociation between accomplishment and satisfaction. The motor disorder, CP, predominantly determines the participation accomplishment while the social environment impacts participation satisfaction. Research and practice should not only focus on accomplishment, which seems to be the standard procedure but also, if not mainly, on satisfaction. Researchers and clinicians should distinguish different aspects of participation concepts for individuals with a disability, such as CP. Authors: Smits DW, van Gorp M, van Wely L, Verheijdend J,  Voorman J, Wintels S, van der Cruijsen J, Ketelaar M.  Arch Rehabil Res Clin Transl 2019 Dec. doi:  10.1016/j.arrct.2019.100021

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