Dear CanChild,

Welcome to the June 15th edition of the CanChild Today! In this issue, we highlight the 2022 CanChild Annual Report, accomplishments from our researchers at recent conferences, registrations for the upcoming Luke's Legacy Family Research Rounds, applications for the Family Engagement in Research course, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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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.

We are excited to announce the official launch of CanChild's 2022 Annual Report! In this Report, we spotlight the milestones in our Strategic Plan, research highlights from our active projects, our accomplishments by the numbers, and more. Our sincerest gratitude to all the scientists, associate members, research and KT staff, trainees, youth and young adults with disabilities, and family members who contributed to CanChild's success in 2022.

From participants to partners: Integrated knowledge translation (iKT) can make space for new perspectives in childhood disability research 

Dr. Kate Einarson, Knowledge Translation (KT) Specialist at Holland Bloorview Kids Rehabilitation Hospital, will talk about why it can be so hard to bridge the "know-do gap", and provide examples of the different ways children, parents, and clinical service providers can contribute at many stages in the research process. 

Applications due June 19th for both Fall and Winter cohorts!

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. Interested in participating? Want more information?

Please email the study team at mpoc2@mcmaster.ca

COVID Time Capsule

Inviting families with children between 8-21 who have a disability: We want to hear about your experiences during COVID and your ideas about what services and supports families need moving forward.

Please contact

Anna Swain: minchena@mcmaster.ca

Mental health problems among transition-aged youth with physical disabilities: an initial evaluation

In this study 33 young people (aged 14-25) with physical disabilities reported how often they experience mental health problems. Somatization, self-esteem, depression, and sense of inadequacy were the most common areas where youth reported difficulties, i.e., scoring within the “at risk” or “clinical significant” categories of the BASC-3 (Behavior Assessment System for Children). Participants with greater number of functional issues were more at risk for mental health problems across most the domains. Female and younger youth were more at risk for mental health problems, yet this was observed only in few domains.  

Authors: Amanda Amalfi, Jia Yin Li, Vanessa Théberge-Lamoureux, Carmen Tang, Emilie Rinaldi, Pranamika Khayargoli, and Dana Anaby

What was the community support offered to people with disabilities during COVID-19 Pandemic in Brazil? A pilot study as part of a global survey

The COVID-19 pandemic brought to light several difficulties faced by people with disabilities and their families, and the community support offered to people with disabilities can have a positive impact on better coping with the pandemic situation. This article, as part of a CanChild survey, assessed community support provided to people with disabilities in Brazil during the COVID-19 pandemic. For the 105 participants, little community support was identified in several areas of life. The findings highlight and give more visibility to the great demand that this population still has in Brazil and enables targeted and effective social actions for the population with disabilities during and after the pandemic period, enabling better health and social care for them, not only for Brazil, but also for other developing countries. 

Authors: Beatriz Helena Brugnaro, Nelci Rocha, Olaf Andres Kraus de Camargo, and Fabiana Nascimento Vieira.

Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.

Author: Monika Novak-Pavlic, Jan Willem Gorter, Michelle P. Phoenix, Samantha K. Micsinszki, Kinga Pozniak, Lin Li, Linda Nguyen, Alice K. Soper, Elaine Kwok, Jael N. Bootsma, Francine Buchanan, Hanae Davis, Sandra Abdel Malek, Karen M. van Meeteren, and Peter L. Rosenbaum.