Dear CanChild,

Welcome to the March 25th edition of CanChild Today! In this issue, we highlight CanChild accomplishments, featured CanChild products, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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The Focus on the Outcomes of Communication Under Six (FOCUS © ) is a clinical tool designed to evaluate change in communicative-participation in preschool children. ‘Communicative participation’ is the child’s communication and interaction in “real world” situations at home, school, or in the community (Eadie et al., 2006).

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

We reduced the number of items in the FOCUS while maintaining its validity as a change detecting measure. We reviewed FOCUS change data for 18,000 children and removed items that were less sensitive to change or showed similar responses for all children (i.e. didn’t discriminate well), leaving 34 items.

The FOCUS-34 change scores were found to predict change scores from the original FOCUS almost perfectly. The FOCUS-34 preserves the clinical integrity, internal consistency, reliability, and validity of the full FOCUS.

By selecting the type of license and language you would like, you can purchase the FOCUS Manual and Scoresheets on the CanChild Shop. Once you provide your information and the transaction is complete, you will be emailed a ZIP file and license confirming your purchase.

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

By selecting the type of license and language you would like, you can purchase the FOCUS Manual and Scoresheets on the CanChild Shop. Once you provide your information and the transaction is complete, you will be emailed a ZIP file and license confirming your purchase.

LAST CHANCE TO PARTICIPATE!

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. 

COVID Time Capsule - Participate in a Research Study!

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, 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.

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

This study identifies the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood and describes how siblings chose these roles.

In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 and 40 years old, had a sibling between 14 and 21 years old with a childhood-onset neurodisability, and spoke English. Nineteen participants from 16 unique families participated in a semi-structured interview using photo elicitation and relational maps techniques to identify sibling roles, emotional processes, and decision-making. Reflexive thematic analysis of the data yielded six unique roles: friend, role model/mentor, protector, advocate, supporter, or caregiver.

The emotions that siblings experienced with each role were categorized into low, medium or high. Siblings also described a four-phase decision-making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings. Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. The study concluded that resources should be developed or further enhanced to support siblings.

Authors: Linda Nguyen, Susan M. Jack, Hanae Davis, Samantha Bellefeuille, Dana Arafeh, Briano Di Rezze, Marjolijn Ketelaar, and Jan Willem Gorter 

Core outcomes for speech-language services in Ontario schools: a group concept mapping study and guiding framework

It's important to know what goals to aim for when providing speech-language therapy services in schools. In this study, we used a method called group concept mapping to figure out what the key goals should be. We gathered opinions from speech-language therapists, teachers, and families. We found seven main goals that are important for speech-language therapy services in schools: 1) Services should be tailored to the classroom, 2) The approach should be holistic, 3) Teachers should be supported, 4) Care should be coordinated, 5) Services should be easy to access, 6) Families should be supported, and 7) Students should be successful. These seven goals should guide the development of a full list of key outcomes for evaluating speech-language therapy services in schools.

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