November 2020
Greetings!

Welcome to the November edition of CanChild Today! In this issue, we are excited to share the latest webinar on youth transition, upcoming public talk, date for the first Canadian transition conference, research opportunity, and recent publications by some of our members.

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New webinar!
Learning from Youth and Young Adults:
Engagement Strategies for Patient-Oriented Research Projects, Committees, and Councils
In Linda Nguyen’s doctoral studies, she has been partnering with the Sibling Youth Advisory Council (SibYAC) to understand the experiences of siblings who have a brother or sister with a disability and who are in the process of preparing for health care transition. 

SibYAC members shared their partnership experiences, as well as strategies for engaging with young people in research in this webinar hosted by the CHILD-BRIGHT Network in collaboration with CanChild. The webinar was co-facilitated by CanChild's SibYAC members Linda Nguyen, Hanae Davis, Samantha Bellefeuille and Jessica Havens, together with CHILD-BRIGHT's National Advisory Youth Panel members Gillian Backlin, Julia Tesolin, and Corinne Lalonde.
Upcoming OBI Public Talk!
The Potential of Data Sharing: What Data Means for your Brain Health
The Ontario Brain Institute will host an online public talk to discuss the roles of data sharing in accelerating research and improving the diagnosis and treatment of brain disorders. Join the virtual event to discover the current work on securing, linking, and sharing healthcare data—and to find out how you can be part of the cause!

Thursday | November 26, 2020 | 6:30 to 7:30 PM EST
Save the date!
Mark your calendars for the first Canadian Transition Conference which will be held on January 26 & 27, 2021! We are excited to bring together youth, families, clinicians, and researchers who are working to improve transition to adulthood. A call for abstracts will be circulated soon. Make sure to follow us on social media to get the latest updates!
Participate in research!
Better Nights, Better Days for Children with Neurodevelopmental Disorders
As families begin the new school year, children’s sleep schedules and routines are especially important. Sleep can have a big impact on children’s behaviour, learning and attention.
Better Nights, Better Days (BNBD) is an evidence-based program tailored for parents of children with neurodevelopmental disorders to help parents help their kids sleep better.

BNBD are looking for families of children ages 4-12 years old from across Canada with a diagnosis of Attention-Deficit/Hyperactivity Disorder, Autism Spectrum Disorder, Fetal Alcohol Spectrum Disorder, or Cerebral Palsy who have insomnia (i.e., difficulties falling and staying asleep) to participate in this completely online research study!
Interested in participating? Visit http://ndd.betternightsbetterdays.ca/ 
to get started!
Recent Publications by CanChild Members!
Functional connectivity and quality of life in young adults with cerebral palsy: a feasibility study
Youth with Cerebral Palsy (CP) experience physical and mental health challenges as they grow up. To ease their transition from adolescence to adulthood, it is important to gain a better understanding of the relationship between the maturing brain and the physical, psychosocial, and cognitive factors that influence well-being. The findings of this study suggest that adaptive emotion regulation skills (e.g., acceptance and problem-solving) are associated with better cognitive functioning and may contribute to improving the quality of life in youth with CP. Clinical intervention may focus on strengthening the emotion regulation skills of youth with CP to assist them in transitioning to adulthood. Authors: Tajik-Parvinchi D, Davis A, Roth S, Rosenbaum P, Hopmans SN, Dudin A, Hall G, Gorter JW; MyStory Study Group. BMC Neurol. 23 Oct 2020. doi: 10.1186/s12883-020-01950-7
Powered mobility interventions for very young children with mobility limitations to aid participation and positive development: the EMPoWER evidence synthesis
This study aimed to identify the benefits and costs of providing powered mobility devices to children younger than five years old. Data from 89 studies published between 1946 and 2019 showed no conclusive evidence on the effectiveness of giving powered mobility in children who are five years old and younger. However, powered mobility positively impacts children's movement, play, and social interactions. Evidence suggests that the 'fit' among the child, the equipment, and the environment is important for the child's independence, freedom and self-expression. Results indicate that focus should be on providing interventions appropriate to children's developmental stage rather than their age. Moreover, powered mobility may benefit children, but it has to be a good fit for their environment as well. Authors: Bray N, Kolehmainen N, McAnuff J, Tanner L, Tuersley L, Beyer F, Grayston A, Wilson D, Edwards RT, Noyes J, Craig D. Health Technol Assess. 2020 October. doi: 10.3310/hta24500.
Experiences of youth with medical complexity and their families during the transition to adulthood: a meta-ethnography
Youth with medical complexity (YMC) is a subset of youth with chronic health conditions who have severe functional limitations and substantial service needs. As YMC transition to adulthood, they require extensive adult health, education, and social services. This study aimed to understand the experiences of YMC and families during the transition to influence policies and optimize support for their needs. This study provided a conceptual model to guide practice, policy, and research on transition. Findings suggest that service providers may focus on the inner constructs of the model (goals, relationships, and actions), and policymakers can draw more attention to outer constructs of the model (system factors and processes of transition). Authors: Li L, Bird M, Carter N, Ploeg J, Gorter JW, Strachan PH. J Transit Med. 2020 September 12. doi: 10.1515/jtm-2020-0002.
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