Dear CanChild,

Welcome to the March 11th edition of CanChild Today! In this issue, we highlight recent and upcoming events, information about this week's featured CanChild products, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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The Measure of Processes of Care (MPOC) is a self-report measure of parents’ perceptions of the extent to which the health services they and their child(ren) receive are family-centred. The MPOC-20 has 20 items – it has been shortened from the original 56-item version. MPOC-20 is a validated, reliable measure that has been used internationally in many evaluations of family-centred service.

Licensing for the electronic (online survey) version of this measure is sold separately.

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

The Measure of Processes of Care for Service Providers (MPOC-SP) is a self-assessment tool for pediatric service providers that measures the extent to which the services they provide are family-centred. The MPOC-SP has 27 items and is often used alongside the parent-completed MPOC.

This is a downloadable PDF. Licensing for the online survey version of this measure is sold separately.

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

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

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.

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss.

This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Authors: Paige Terrien Church, Maya Dahan, Amy Rule, Annie Janvier, Jane E Stewart, John S Maypole, Darcy Fehlings, Jonathan S Litt, and Rudaina Banihani

Reliability and Validity of the Youth and Young-Adult Participation and Environment Measure (Y-PEM): An Initial Evaluation

This paper examines the psychometric properties and aspects of utility of the Youth and young-adult Participation and Environment Measure (Y-PEM). A survey was conducted online, and 113 young people aged between 12 to 31, with and without physical disabilities, participated. The survey contained both the Y-PEM and QQ-10 questionnaire. To assess the validity of the survey, the researchers compared the participation levels and environmental barriers/facilitators between those with and without disabilities via t-test. To measure the test-retest reliability, a sub-sample of 70 participants completed the Y-PEM twice, with a 2-4 week gap between the two surveys. 

The results showed that participants with disabilities tend to have lower levels of frequency and involvement across all four settings: home, school/educational, community, and workplace. However, the Y-PEM was perceived as a valuable tool with a relatively low burden by the participants.

Authors: Saeideh Shahin, Sara Ahmed, Briano DiRezze, and Dana Anaby