Additional resources
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Under this section, you will find additional materials & tools to advance your research team’s learning of POR. Click on each section title or arrow to expand and explore the resources!
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Guiding Family Engagement in Research: A Framework from Holland Bloorview Kids Rehabilitation Hospital: Provides an overview of a framework to support authentic and meaningful partnerships among families, staff, and researchers to advance childhood disability research centered around inclusion, transparency, mutual respect, family leadership, and collaboration.
McCain Model for Youth Engagement: The article discusses the development and success of a Youth-Adult Partnership (Y-AP) initiative at the McCain Centre at the Centre for Addiction and Mental Health (CAMH). The McCain Y-AP model integrates youth into mental health and substance use initiatives, allowing for flexible involvement, mentorship, and authentic decision-making.
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Patient Engagement Toolkit: Offers a collection of tips, outlines roles for engagement, and provides practical tools for teams to improve research process, skills, and engagement, especially with PWLEs.
Patient and Family Engagement in Research: A Guide For Researchers: This Engagement Toolkit allows researchers to select from a list of options that relate to their study, and see examples and benefits of doing POR. They can also complete an engagement readiness assessment tool in this toolkit.
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Student Project Tools for Family Engagement in Research: Connects you to other resources centred around knowledge translation and dissemination, as well as tools and guidelines for becoming a PWLE in research, knowledge dissemination, establishing partnerships, and the ethics behind youth and family engagement in research.
Stories of Pediatric Rehabilitation Practitioners with/in Indigenous Communities: This guide is about exploring Cultural Safety in paediatric rehabilitation services with and within non-urban Indigenous communities in Canada.
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2022 CHILD-BRIGHT Patient-Oriented Research Discussions (PODs): Explore a series of POR discussions centred around practical tools and training resources, integrating patient perspectives, knowledge translation practices, and equitable compensation in POR.
2022 CHILD-BRIGHT Learning Series: This learning series covers topics related to trauma informed practice in medical research and enhancing engagement through the use of social media in POR.
2021 CHILD-BRIGHT Learning Series: This webinar explores the importance of diversity, accessibility, and accommodation considerations in POR with youth.
2019 CHILD-BRIGHT Summer Learning Series: This learning series covers topics related to best practices for collaboration, enhancing participation, and prioritizing reciprocity in research.
2018 CHILD-BRIGHT Summer Learning Series: This learning series covers topics related to incorporating patient engagement in a research project, exploring barriers, drivers and benefits of public participation in research, and a general overview of CHILD-BRIGHTs strategy for POR.
2020 CHILD-BRIGHT Summer Learning Series Webinars: This learning series covers topics related to ethics when engaging patient partners in research and finding the best ways to ensure that patient engagement is meaningful and authentic.
Patient Engagement in Research Rounds (PEIRR) Webinar: PEIRR - Webinar One: Meaningful Patient Engagement in the Context of Paediatric Pain Research: A webinar on the topic of patient engagement in the context of paediatric research
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Matters of Engagement: A series of podcasts on patient engagement and how people in Canada access and experience health care service delivery and distribution; how those experiences impact both individual and community health; and the multitude of environmental, systemic, and political factors that favour some and disadvantage many.
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Student Projects - CanChild Family Engagement in Research KT Tools: The purpose of the KT tools developed by students is to disseminate knowledge and information on patient and family engagement in childhood neurodevelopmental research. Examples of KT tools include infographics, webinars, podcasts, or any other means of sharing information. We encourage you to download and use these KT tools to support your engagement in research!
Project Engage: This Highlights an equity-based approach to research that fosters participatory and visual methods that can encourage the participation of populations that are often excluded from more traditional research designs.
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Can-SOLVE CKD: Knowledge Keepers in Research: A resource to create a culturally safe space for researchers, patient partners and Knowledge Keepers to come together. It will encourage researchers to honor various forms of knowledge alongside Indigenous Knowledge Keepers and help them translate those teachings into practice.
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BC SUPPORT Unit: Evidence-Informed Practices and Strategies for Patient-Oriented Research (POR): A ‘Menu’ for Research Teams: To support research teams considering or moving into Patient-Oriented Research (POR) by offering a ‘menu’ of evidence-informed practices and strategies for effective engagement.
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Race, ethnicity, and socioeconomic status in research on child health: This article examines existing research on disparities in child health, development, and access to health care across different racial, ethnic, and socioeconomic groups.
Co-designing simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research: This study focused on creating simulation training videos to enhance authentic and meaningful engagement between researchers, youth with disabilities, and their families in childhood disability research.
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