Dear CanChild,

Welcome to the May 17th edition of CanChild Today! Read more to celebrate our victories, explore our must-have products, and seize opportunities to join groundbreaking research. Plus, catch up on cutting-edge publications by our brilliant members!

Don't keep the excitement to yourself - share our newsletter and resources with your circle! Register here to subscribe to the CanChild Today! newsletter for free! Can't get enough? Access our past issues archived here.

CanChild research at EACD 2024!

With the annual European Academy of Childhood Research Meeting fast approaching, we invite you to explore the Scientific Programme here. Discover groundbreaking research being presented by CanChild scientists and delve into the latest findings shaping the future of childhood research!

CanChild getting involved!

This month, our CanChild crew was buzzing with activity! Check out these snapshots: first up, we've got some cool shots from our F-words training session in Courtenay, BC, where we joined forces with members from Queen Alexandra. Next, dive into the fun at the All Abilities Allstars event. And last but not least, peek into the F-words workshop we hosted at the Pac Rim conference, joined by our awesome colleagues from New Zealand.

Gateway into the F-Words for Child Development!

We've just released two brand new videos, all about the F-words for Child Development - one that introduces the F-words from a parent perspective and the other that provides more background on the International Classification of Functioning, Disability, and Health. These videos are your gateway to the F-words Online Training Program, an amazing free online resource that provides comprehensive learning through storytelling and reflections of families, clinicians, and educators from around the world!

In just one hour, our GMFM Training Video provides invaluable insights into the GMFM tools, including GMFM-88, GMFM-66, and two abbreviated versions of the GMFM-66. Learn the ins and outs of administration, scoring, and interpreting results, all while discovering the power of the Gross Motor Ability Estimator (GMAE) and GMFM App+. Dive into item maps, Motor Growth Curves, and specialized considerations for children with Down syndrome. With engaging descriptions and video clips showcasing selected GMFM items, this video is your ultimate guide to mastering the GMFM.

The GMFM Criterion Test is an online tool that empowers you to assess your knowledge and scoring proficiency through a series of engaging tasks. Dive into 10 stimulating multiple-choice questions and evaluate 20 video clips showcasing children's GMFM performances. Utilize the comprehensive GMFM Manual and GMFM Training Video for guidance throughout the test. Receive instant feedback as you strive for excellence, and don't fret if criterion is not achieved on the first try, an alternative test awaits! Achieving 80% or higher in both sections will unlock your certificate!

For additional information about other CanChild products, visit the CanChild Shop!

COVID Time Capsule - Participate in a Research Study!



Researchers at CanChild Centre for Childhood Disability Research is extending an exclusive invitation to Canadian parents of children between 8-21 who have a disability or extra healthcare needs to participate in a survey. We want to hear about your family’s experiences during COVID and your ideas about what services and supports families like yours need moving forward. We designed this survey based on stories that other youth and parents shared with us. We would like to hear from you! Parents will get a gift card as a thank you for their time.

For more information, check the study website or email Anna Swain at minchena@mcmaster.ca.

Accessibility of childcare services for children with disabilities in Canada

We want to speak with parents of kids with disabilities to learn about their experiences of finding and using childcare and how to make early learning inclusive and accessible. We would like to talk to you if your child is under age 5 and attends childcare or if your child has used childcare in the last 3 years.

For more information, please contact the study team:

Michelle Phoenix, PhD: phoenimp@mcmaster.ca

Wenonah Campbell, PhD: campbelw@mcmaster.ca

Measure of Processes of Care (MPOC 2.0)

Researchers at CanChild have developed a new questionnaire to measure parents’ experiences with healthcare services for their children with disabilities. Now, we would like to have parents test it out!

Complete a set of questions to tell us about your experiences with healthcare services. You will receive a $20 e-gift card upon completion!

Interested in participating? Want more information?

Please email the study team at mpoc2@mcmaster.ca

This study has been reviewed by the Hamilton Integrated Research Ethics Board under project #15702.

Utilizing an Environmental Framework to Explore the Acceptability of a Health Promotion Program for Youth with Disabilities

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.

Authors: Meaghan Walker, Gillian A King, Toni Lui, Nivatha Moothathamby, and Amy C McPherson

Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update

Dystonia, typically characterized by slow repetitive involuntary movements, stiff abnormal postures, and hypertonia, is common among individuals with cerebral palsy (CP). Dystonia can interfere with activities and have considerable impact on motor function, pain/comfort, and ease of caregiving. Although pharmacological and neurosurgical approaches are used clinically in individuals with CP and dystonia that is causing interference, evidence to support these options is limited. This clinical practice guideline update comprises 10 evidence-based recommendations on the use of pharmacological and neurosurgical interventions for individuals with CP and dystonia causing interference, developed by an international expert panel following the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach. The recommendations are intended to help inform clinicians in their use of these management options for individuals with CP and dystonia, and to guide a shared decision-making process in selecting a management approach that is aligned with the individual's and the family's values and preferences.

Authors: Darcy Fehlings, Brenda Agnew, Hortensia Gimeno, Adrienne Harvey, Kate Himmelmann, Jean-Pierre Lin, Jonathan W Mink, Elegast Monbaliu, James Rice, Emma Bohn, and Yngve Falck-Ytter

Caregiver perspectives of scoliosis surgery for children with cerebral palsy: a qualitative study

This study delved into the experiences of primary caregivers of children with cerebral palsy (CP) who underwent spinal surgery for scoliosis. It involved 14 caregivers (including 8 biological mothers) aged 40-49 years from Australia. Their children had CP and were aged 5-18 years. Through online semi-structured interviews, the research revealed four key themes. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. The findings highlighted the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.

Authors: Kirsty Stewart, Georgia Price, Jayne Kelderman, Sarah Carman, Christine Imms, and Margaret Wallen

Home participation and home and environmental factors in children and adolescents with Down syndrome

This study aimed to examine the current home participation and caregiver's desire for change in home participation of children and adolescents with Down syndrome, along with home environmental factors. They surveyed 82 caregivers of children with Down syndrome and collected data on participation and environmental factors using a specific measure. Results showed that participation was highest in personal care management and lowest in school-related activities. Most caregivers wanted changes in homework and household chores. Factors like gender, caregiver's social distancing practices during COVID-19, and therapy received by children were associated with participation frequency. Younger age and higher environmental support were linked to greater involvement, while older age correlated with caregivers wanting more change. The study suggests the need for creative strategies to enhance participation, taking caregiver preferences into account.

Authors: Beatriz Helena Brugnaro, Gesica Fernandes, Ana Carolina De Campos, Silvia Letícia Pavão, Luzia Iara Pfeifer, Olaf Kraus de Camargo, Oksana Hlyva, Nelci Adriana Cicuto Ferreira Rocha.