Dear CanChild,

Welcome to the September 7th edition of CanChild Today! In this issue, we highlight the achievements of CanChild researchers, new events and programs, information about this week's featured CanChild product, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

Please feel free to share CanChild newsletter & resources with family, friends and colleagues. 

They can subscribe to the CanChild Today! newsletter for free by registering here. 

Our past issues are archived on the CanChild website and can be accessed here.

Congratulations to Alice Kelen Soper who is a recipient of the 2023 Vanier Canada Graduate Scholarship. The Vanier Scholarship is one of Canada’s most prestigious graduate awards and is aimed at attracting and retaining world-class doctoral students!

Alice is completing her PhD in Rehabilitation Science at McMaster University, under supervisor Peter Rosenbaum. Alice is currently working on a program called ENVISAGE (ENabling VISions And Growing Expectations), created in 2018 to increase family-centredness of services and empower parents of children with neurodevelopmental (NDD) disabilities.

We are happy to announce the newly formed International Society of Research and Advocacy for Developmental Coordination Disorder (ISRA-DCD), a non-profit organization with the goal of supporting and promoting research and advocacy for DCD. ISRA-DCD welcomes everyone interested in research and advocacy for DCD to join us: professionals, students, families, and individuals with DCD.

For additional information, visit www.isra-dcd.com

Playgrounds and sports programs are two of the many fun activities for children to participate within their communities. Kelly Arbour-Nicitopoulos will share research and tangible strategies on how to support quality participation in physical activity for children and youth with disabilities.

Date: Wednesday Sept 27 @ 7 p.m. EST

Location: Online

The McMaster Handwriting Assessment Protocol, 3rd Edition (MHAP) provides a structured framework for assessing the handwriting of school-aged children in kindergarten to Grade 6. This protocol was designed to identify the specific areas in which a child is having difficulty with handwriting and to help occupational therapists determine whether and where to intervene. 

The MHAP is a very practical tool for occupational therapists working with school-aged children who have difficulties with handwriting, an important occupation that contributes to school success. Please note, the MHAP is a protocol for assessment, not a norm-referenced test.

For additional information about this product, visit the CanChild Shop!

A Clinical Trial of a New Concussion Recovery App for Youth

We are looking for child and youth participants who:

• Are between 10-18 years old
• Have recently been diagnosed with a concussion
• Have NOT been admitted to a critical care unit

If you match these criteria, you may be eligible to participate in a research study!

Participants:

1. Will be asked to attend 1-2 visits via Zoom or in person (30 mins - 1 hour).
2. May be given an Apple Watch to wear until recovered.
3. May be asked to use the Back2Play App and complete symptom surveys three times a day or follow usual care protocols.

Participants will receive a gift card and data usage compensation upon completion.

For more information or to sign up to participate, please contact Sam Perrotta, the research assistant, at concuss@mcmaster.ca (365-366-5620).

Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research

This article investigates how other articles describe patients, relatives and researchers’ roles in patient and public involvement and engagement (PPIE) in health research and how impact and outcomes are achieved. It also examines which factors are supportive of creating these research partnerships. This literature review was accomplished through a rapid review of 70 articles from various research disciplines and areas published between 2012 and February 2022. From these 70 articles, 40 were chosen and closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, the Involvement Matrix was used. This tool uses five different roles: Listener (who is given information), Co-thinker (who is asked to provide opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). Findings suggest that researchers’ decision‑making roles give them control of where and when to include PRs in their projects. Co‑authorship is a way of acknowledging patients’ contributions, which may legitimize their knowledge and the partnership. The authors describe common enablers which can help future partnership formation.

Authors: Anne Wettergren Karlsson, Anne Kragh‑Sørensen, Kirsten Børgesen, Karsten Erik Behrens, Torben Andersen, Maiken Langhof Kidholm, Mette Juel Rothmann, Marjolijn Ketelaar, and Astrid Janssens.

Behavioural reactions to an emotion evoking task in infants at increased likelihood for autism spectrum disorder

Infants with increased likelihood of autism spectrum disorder (ASD) exhibit more negative affect and avoidance behaviour than typically developing infants, and children with ASD express fear differently than typically developing peers. The purpose of this study is to explore behavioural reactions to emotion-evoking stimuli in infants at increased familial likelihood for autism spectrum disorder (ASD). 55 increased likelihood (IL) infants (i.e., siblings of children diagnosed with ASD) and 27 typical likelihood (TL) infants (i.e., no family history of ASD) participated in this study. When the infants were at 18 months, they were shown two masks meant to elicit fearful responses in older children and examined behavioural differences in approach, avoidance, ‘freezing’, crying, gaze aversion, and smiling. When the infants reached 24 months, they were assessed with the Toddler Module of the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2). Results of video-based coding showed that infants with an increased likelihood of ASD exhibited more intense avoidance behaviour than typical likelihood infants in response to masks. Results also showed that the intensity of avoidance and duration of freezing were positively correlated with ADOS-2 symptom severity scores. Findings suggest that differences in response to emotion-eliciting stimuli may predict later ASD symptoms. Such behavioural differences may inform early detection and intervention of ASD.

Authors: Melissa Susko, Vickie L. Armstrong, Jessica A. Brian, Susan E. Bryson, Azadeh Kushki, Lori-Ann R. Sacrey, Lonnie Zwaigenbaum, Isabel M. Smith.

Autonomy, self-realization, and psychological empowerment: a prospective mixed methods study of the effects of residential immersive life skills programs for youth with physical disabilities



The purpose of this study was to examine change in self-determination associated with youth participation in residential immersive life skills (RILS) programs. The Arc's Self-Determination Scale was administered pre- and post-program, and at 3- and 12-month follow-ups, to 27 RILS youth and a comparison group of 11 youth enrolled in a non-residential life skills program. Ten RILS youth were interviewed 3 and 12 months post-program, with content analysis used to explore changes in autonomy, self-realization, and psychological empowerment. RILS youth showed a significant increase in autonomy immediately after which were maintained one year later. The youths in the comparison group showed an increased autonomy only at 3 months post-program. Results showed that RILS programs can enhance the autonomy of youth with physical disabilities and contribute to their sense of confidence and understanding of themselves as they move forward in life.

Author: Gillian King, Shauna Kingsnorth, Amy C. McPherson & Diana Tajik-Parvinchi.