Greetings!
Welcome to the August edition of CanChild Today! In this issue, we are excited to share our short video series, F-Words resources, research opportunities, reports and recent publications by some of our members.
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We created a short video series featuring nonverbal people and their families. In the first two parts, we hope to inspire everyone with their stories and change the social stigma around nonverbal people. Make sure to follow us on
Facebook or
Twitter and be the first to know when Part 3 goes live!
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Approaches to Supporting Transitions from Child to Adult Care
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This rapid review, conducted by the McMaster Health Forum, explores the
features of novel approaches to supporting transitions from child to adult care for young people with special healthcare needs in Canada. Four broad focus areas emerged from the relevant systematic reviews: 1) key features of service-user, provider- and organization-focused transition interventions; 2) stakeholder views and experiences with approaches for supporting transitional care; 3) barriers and facilitators for supporting transitional care; and 4) recommendations for improving transitional care. In addition, the jurisdictional scan identified 13 tools that assisted with transition. Insights of key informants from the Canadian provinces of Alberta, Ontario, Quebec and Nova Scotia as well as from Australia, the U.S, and the Netherlands gave context to the results and clarified which features are effective in practice.
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COVID-19 Impact on Caregivers and Families of Autistic People!
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This rapid synthesis report used an integrated knowledge translation approach to better understand the impact of COVID-19 on the mental health and well-being of caregivers and families of autistic people. The online report sheds light on the current difficulties of caregivers and families, limited support programs available to them and future planning strategies to address their needs.
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New Look of the F-Words Framework!
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The F-Words build upon the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework. The F-words focus on six key areas of child development: fitness, function, friends, family, fun and future. Recognizing that no one factor is more important than another, we hope to encourage people in the childhood disability field to adopt this way of thinking and apply these concepts in their work with children with disabilities and their families.
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F-Words Tools Translations!
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Did you know that your favourite F-Words Tools are available in multiple languages? You can download the French, Italian, Brazilian Portuguese, Croatian and Turkish versions from the
F-Words Knowledge Hub.
We want to continue sharing the F-Words ideas around the world! If you are thinking of creating translations for the F-Words Tools, please contact
canchild@mcmaster.ca.
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BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study
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Do you have 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 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.
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Youth, Young-adult Participation and Environment Measure (Y-PEM)
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Dr. Dana Anaby and Saeideh Shahin from McGill University are conducting a research project that aims to evaluate the ease of completion of a participation-based measure called the Youth and Young Adult Participation and Environment Measure (Y-PEM).
Who can participate?
- Youth and Young adults between 12 and 30 years old and living with a physical disability
- Can read and understand English
What will you do?
- Complete a demographic questionnaire, the Y-PEM, and a short questionnaire to evaluate the ease of completion of the Y-PEM
Where will it be?
- In your preferred location, e.g. at home.
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Saeideh Shahin (PhD student)
514-488-5552 ext. 1131
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Family Engagement in Research Tools!
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We developed the Family Engagement in Research Tools to support the planning of family partnership on research teams. The worksheets including the Family Engagement Plan, Team Member Introduction, and Team Brainstorming as well as the Budgeting Form for Stakeholder Engagement are available on the
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Recent Publications by
CanChild
Members!
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Researchers and patients can use the Involvement Matrix as a conversation tool to prospectively discuss their roles and expectations in a research project. The tool includes five roles for involvement (Listener, Co-thinker, Advisor, Partner, and Decision-maker) over three main phases of research projects (Preparation, Execution, and Implementation). Applying the Involvement Matrix before and during different phases of a project has the potential to help researchers and patients to make clear agreements about research involvement and engagement of patients. The Involvement Matrix should be part of a larger set of implementation strategies for making patient and public involvement the norm in clinical
research. Authors: Smits DW, van Meeteren K, Klem M, Alsem M,
Ketelaar M
. Res Involv Engagem. 2020 Jun 16.
doi: 10.1186/s40900-020-00188-4
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To examine self- and proxy-reported symptoms of depression in children with epilepsy, this study collected data from 477 children in pediatric neurology care centers across Canada. Results show that symptoms of depression are generally low and stable over 28 months and are not associated with seizure severity. The reports of parents on depressive symptoms are comparable to the self-evaluations of the children. In addition, children who reported a higher level of depressive symptoms showed normalization of scores after repeated assessment. This study highlights the value of repeated assessments over time and the importance of recognizing psychological symptoms and comorbidities in children with epilepsy. Authors: Rosic T, Avery L, Streiner D,
Ferro M,
Rosenbaum P, Cunningham C,
Ronen G. Dev Med Child Neurol. 2020 May;62(5):593-599. doi:
10.1111/dmcn.14387
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This population-level study of kindergarten children in Canada reported the 0.30% prevalence of Fetal Alcohol Spectrum Disorder (FASD) among provincial and territorial jurisdictions, with the lowest level in Quebec and highest in Manitoba. FASD involves the physical, mental, and behavioural deficits of a child due to alcohol exposure before birth. FASD can be difficult to diagnose in early and middle childhood for a number of reasons. Data from 603,904 kindergarten pupils found that most children with FASD had teacher-reported home problems interfering with classroom functioning. A better understanding of the characteristics of FASD, especially by educators, may be an important starting point in improving the ability to early identify FASD in children and anticipate future needs, supports and services. Authors: Pei J, Reid-Westoby C, Siddiqua A, Elshamy Y, Rorem D, Bennett T, Birken C, Coplan R, Duku E,
Ferro M
, Forer B, Georgiades S,
Gorter JW
, Guhn M, Maguire J, Manson H, Santos R, Brownell M, Janus M. J Autism Dev Disord. 2020 May 29.
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