July 2020

Welcome to the July edition of CanChild Today! In this issue, we are excited to share research opportunities, the upcoming Science & Family Day, the new video series and F-Words logo, and recent publications by some of our members.

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Save the Date!
October 6, 2020 is the 7th Annual CP-NET Science and Family Day! Join our online event to celebrate World Cerebral Palsy (CP) Day, discover the latest CP research and community resources, and connect with families and scientists. You can check out our past events on the CP-NET website or follow our Facebook page for more information! We will update you with the registration details soon, stay tuned!
Participate in Research!
The COVID-19 pandemic is hard for everyone but coping with the pandemic can be even harder for people with disabilities and their families. We are inviting Canadian families to contribute to the World Health Organization / UNICEF Global Report on Developmental Delays, Disorders, and Disabilities. Your response to a brief survey will help to identify service needs and inform policies related to the pandemic.
Before you start, please read the Informed Consent to see if you agree to answer the questions.

After completing the survey, we will send you a gift of $15 as a thank you for your participation.

For more information, please contact
Miriam Gonzalez: miriam.gonzalez@mcgill.ca
Participate in a survey about changes in therapy service delivery during the COVID-19 pandemic!

Dr. Danielle Levac, a CanChild Scientist at Northeastern University in Boston, USA is conducting a survey to explore how the COVID-19 pandemic has affected therapy services for school-aged children with disabilities. We are interested in learning how changes in therapy services may be affecting functioning and participation for children with disabilities, and how families are using devices and technologies to meet therapeutic and social needs during this time.

The anonymous survey will take about 15 minutes to complete, and results will help researchers understand how to best support children with disabilities during and after this time. Families have the option of entering into a draw to win 1 of 5 $50 Amazon gift cards!
Survey link for participants in Canada: https://j.mp/2V0C4A5

Survey link for participants in the USA: https://j.mp/2MXb0wW

Please contact the principal investigator at d.levac@northeastern.edu with any questions!
Do you have a Junior Scientist at home?
Are you willing to spend some time helping researchers at McMaster? We would love to hear from you.

Our team is looking for typically developing children between 2 – 8.5 years old to help validate the English version of a new computer program, the Computer-Based Instrument for Low motor Language Test (C-BiLLT). You and your child can participate remotely from the comfort of your home.

To learn more about the study, please visit the
C-BiLLT webpage or contact the research coordinator:

Salma Elmansy
Preview of the New Short Video Series!
In this 3-part video series, Yvonne, Fatmah and Marshall shed light on the stigma nonverbal people face today and discuss their hopes for the future. Stay tuned for our first video,
"Meet Our Heroes"!

Make sure to follow us on social media and be the first to know when the video goes live!
New F-Words Logo!
We are excited to share our new 'F-words for Child Development' logo. The 'F-words' apply to all children and focus on the key areas of child development. As such, we have created a new logo to highlight the importance and relevance of the 'F-words' for all children.

Participation in Children with Neurodisability!
Participation: Optimising Outcomes in Childhood-Onset Neurodisability
Clinics in Developmental Medicine
Edited by Christine Imms and Dido Green

This unique book focuses on enabling children and young people with neurodisability to participate in the varied life situations that form their personal, familial and cultural worlds.

  • Highly expert contributors experienced in the field and up to date with current conceptual frameworks and research.
  • Vignettes, scenarios and real-life stories are used to challenge assumptions, support application to practice and drive future thinking.

Mar 2020 / 240 x 170mm / 288 pages / Hardback / ISBN 978-1-911612-16-2 / £78.00
Contact admin@mackeith.co.uk to receive further details.

Recent Publications by CanChild Members!
Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. Parents of children with CP (1-8 years old) who participated in this study expressed a range of issues concerning the care for sleep of their child. Within the current situation domain, parents are concerned with monitoring their child's sleep both at night and during day time, ensuring their child sleeps well before everything else, and feeling overwhelmed with setting priorities. They also mentioned the limited attention for sleep in healthcare and the lack of CP-specific knowledge. In the second domain, parents are concerned with the causes and consequences of sleep problems and the unclear role of healthcare professionals (HCPs) when it comes to caring for sleep. Lastly, parents expressed the need for social support, information, more attention for sleep, change of attitude from HCPs, a different approach to sleep care, and a solution or intervention that works for their children. Authors: Hulst RY, Voorman JM, Pillen S, Ketelaar M, Visser-Meily JMA, Verschuren O. Disabil Rehabil. 2020 Jun 12:1-10. doi: 10.1080/09638288.2020.1770873
Residential immersive life skills (RILS) programs provide learning and social opportunities for youth with disabilities in an away-from-home group setting. Reports from 29 participants showed that RILS programs enhance the autonomy and empowerment of youth with disabilities as well as provide a rich variety of opportunities and capacity-enhancing experiences. Program experiences and outcomes varied by gender. There were significant pre-post changes in autonomy for all youth and self-efficacy for males only. The findings may assist program managers and service providers to design transition programs to better support youth autonomy and empowerment by providing opportunities for social interaction, personal growth, psychological engagement, and choice. Authors: King G , McPherson AC, Kingsnorth S, Gorter JW , Avery L, Rudzik A. Disabil Rehabil. 2020 Jan 29. doi: 10.1080/09638288.2020.1716864
Research has demonstrated that videogame programs can be an effective intervention targeting social challenges among children with autism spectrum disorder (ASD). A total of 26 stakeholders comprised of parents, youth and clinicians participated in this study to identify helpful design elements of video programs for children with ASD. Three themes emerged from the thematic analysis: (1) addressing heterogeneity and diverse needs, (2) mirroring the real world, and (3) teaching strategies. Including the stakeholders in the development of videogame programs may enhance the potential of these user-friendly and engaging tools to complement traditional interventions when overcoming social difficulties in individuals with ASD. Authors: Ghanouni P, Jarus T, Zwicker J, Lucyshyn J, Fenn B, Stokley E. Games Health J. 2020 Apr. doi: 10.1089/g4h.2019.0070
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