Dear CanChild,

Welcome to the February 20th edition of CanChild Today! In this issue, we highlight recent accomplishments, information about this week's featured CanChild product, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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Y-PEM - Youth, Young-adult Participation and Environment Measure:

The Y-PEM is a self-reported measure that examines the participation and environment of youth and young adults ages 12-30 years across four settings: home, school/educational setting, community, and the workplace.

The Y-PEM is designed to gather the first-hand experiences of youth and young adults about their current participation and the perceived supports and barriers to participation. The newly added workplace participation domain (or setting) contains six participation items (activity sets) and 16 environmental items.

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

Exploring the Impact of Factors on Children's Viewing Experiences

In partnership with CBC Kids and Reading Lab, CanChild is exploring the impact of different factors on children's video-viewing experiences.

This research study is ideal for English-speaking children in Canada aged 6 to 10. Participants will watch short video clips and answer questions afterward. Children will need a minimum first-grade reading level to participate. Children with significant cognitive impairment are not eligible for the study but those with corrected visual impairments are welcome to participate. It can take place online or in person at McMaster University.

Interested parents, please email cbccc@mcmaster.ca. Compensation will be provided whether your child completes the study or chooses to withdraw at any point. Please note that no-shows will not be compensated.

This study has been reviewed by the Hamilton Research Ethics Board under Project #16432. 

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.

COVID Time Capsule

Researchers at CanChild Centre for Childhood Disability Research are inviting 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, please contact Anna Swain at minchena@mcmaster.ca or visit the webpage for the COVID Time Capsule

Exploring the valued outcomes of school-based speech-language therapy services: a sequential iterative design

To date, the results of studies about speech-language services in schools have been too narrowly defined and don’t align with the outcomes prioritized by families, teachers, and children. The most important outcomes of school-based, speech-languages services have not been directly and systematically investigated. This study aimed to address this gap by asking school community members what outcomes were most relevant to evaluating and improving the delivery of speech-language services in schools. The study was conducted using interviews with 14 family members, educators, and speech-language therapists who asked what outcomes or impacts of school-based services they considered most important or valuable. The content analysis yielded a six-topic solution: (1) meeting all needs appropriately, (2) teamwork and collaboration, (3) building capacities, (4) supporting individual student needs in context, (5) coordinating care, and finally (6) supporting core educational goals. School community members identified a wide range of important outcomes for speech-language services, including student, interpersonal, and system-level outcomes. However, each group prioritized different outcomes, so the researchers in this study recommend agreeing on the most important outcomes and how to measure them.

Authors: Peter T. Cahill, Stella Ng, Lyn S. Turkstra, Mark A. Ferro, and Wenonah N. Campbell

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research

In the READYorNot™ Brain-Based Disabilities Study, the MyREADY Transition™ Brain-Based Disabilities App was developed to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15–17 years old. This research team also created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout the multi-year and multi-stage project. This commentary, initiated and co-authored by members of PFAC, researchers, staff, and a trainee, describes how the course of the partnership in response to critical feedback from partners was corrected. By reviewing the partnership experiences and documentation of PFAC activities, three collective goals were set: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Key recommendations included: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. The researchers hope that by sharing their experiences and lessons learned, they can help other projects better engage with young people and families.

Authors: Linda Nguyen, Kinga Pozniak, Sonya Strohm, Jessica Havens, Claire Dawe-McCord, Donna Thomson, Connie Putterman, Dana Arafeh, Barb Galuppi, Alicia Via-Dufresne Ley, Shelley Doucet, Khush Amaria, Adrienne H. Kovacs, Ariane Marelli, Ronen Rozenblum, Jan Willem Gorter & CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Trial Study Group

*Towards multi-faceted outcomes of participation-based interventions: mapping the PREP’s effects for children and youth with disabilities

Systematically organizing participation effects may guide participation-based research designs in rehabilitation. This study used an outcome matrix to systematically map the wide range of participation effects generated by a single participation intervention, i.e., Pathways and Resources for Engagement and Participation (PREP). Eleven studies were identified. Most outcomes were mapped to ultimate effects (the targeted outcomes of the intervention) at an initial level, that is, changes specific to a particular activity, context, or time. These effects involved improvement in participation in self-chosen activities (e.g., badminton, piano), with small to large effects. Some outcomes were mapped to initial instrumental effects (e.g., changes in body functions such as muscle strength and anxiety) that occur without direct intervention. A few studies demonstrated enduring outcomes that are broad in terms of contexts/activities (e.g., changes in participation in school or home that were not initially targeted) or have long-lasting impacts (e.g., an increase of participation for a longer period). Research designs that can capture enduring participation effects are proposed.

Authors: Yu-Hsin Hsieh, Mallory Ryan, & Dana Anaby

*This article summary has been updated since the last issue to match the article being featured correctly.