Hi Everyone!
I hope you all have been enjoying some sunshine either outdoors or just in good things happening in your life. Have something in your life you’d like to celebrate? We’d love to share it with the FER community! Recently publish a paper? Win an award? We’d like to celebrate with you! Consider sending me an email at lukesbloggermom@hotmail.ca and we will share it in the newsletter.
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
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FER Course Check-In
April 1st, 2021 | 7:00 to 8:00 PM EST
You're invited to join a Microsoft Teams meeting
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During this FER course check-in we will talk about research partner databases and the opportunities that they provide.
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Luke's Legacy Family Research Rounds
March 31st, 2021 | 7:00 to 8:00 PM EST
All About Sleep!
The Better Nights Better Days Study
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Congratulations to our FER Grad (Winter 2019), Brianne Redquest, for receiving the Dr. Sterling Clarren FASD Research Award for her research on understanding and reducing stress in caregivers of individuals with FASD.
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FER Grads (Fall 2020), Jessica Lewis, Karen Kelm, Esther Lee, and Adriel (AJ) Orena, developed the "Roles of Experience Experts" infographic tools, adapted from the Involvement Matrix developed by FER Grad (Fall 2018) Karen van Meeteren and team. The Involvement Matrix is a researcher-facing tool intended to support researchers partnering with experience experts (EE). These complementary infographics are targeted towards the EE to read on their own time. These tools provide quick, clear definitions of the potential roles available within a project in order to give EEs a better idea of the opportunities for research involvement. Click here or the infographic (right) to download the tool.
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Podcast co-developed by FER Grad
Parenting during COVID-19 and beyond
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FER Grad (Fall 2019), Meghan Ford, helped create a family advisory committee in her lab at SickKids (NeuroOutcomes). In one advisory meeting this past summer, the parent-partners suggested making a Podcast instead of yet another pamphlet, website, etc., so they would be able to multi-task and absorb the information. The committee proposed the podcast in a recent grant and were awarded funding. The podcast is a direct result of their collaboration with parent partners.
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FER Presentation by Fall 2020 FER Grads |
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FER Grads Liz Boyer, Pamela Libralesso, and Sara Pot, developed a presentation on family engagement in research for their final KT project. They went on to present to researchers at Liz's institution. The group co-presented an expanded and customized version of their final KT Presentation, which included a story-telling component unique to the history of the institution as it relates to patient and family engagement. There was lively discussion from interested individuals. The researchers had a follow-up meeting to discuss further and brainstorm how to implement more systematic family engagement in research at their institution. A short proposal has been drafted and submitted to the Research Manager. Click here to see the presentation guidelines.
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Upcoming Speaker Series
March 19th, 2021 | 11:30 to 1:00 PM EST
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Engage, Educate, & Innovate...How has the McMaster Co-Design Hub worked to advance co-design with structurally vulnerable communities? Where do we need to go from here? You are invited to participate in a dialogue about the work of the Co-Design Hub over the past year and our emerging Theory of Change, as well as explore opportunities to engage, network, and share insights with our growing co-design community.
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CP-NET Webinar on Patient Engagement in Research
Watch the CP-NET webinar below
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This CP-NET Webinar was on Patient Engagement in Research: The value and impact of genuine partnerships. Multiple members of the Family Engagement in Research teaching team (Donna Thomson, Samantha Micsinszki, Rae Martens, and Kinga Pozniak) presented on what genuine patient and family engagement in research means. Five CP-NET research platforms shared their experiences with patient engagement in research, and a young adult with CP discussed his perspectives on patient engagement. For more information on CP-NET, click here.
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We want to hear from YOU: Transition to adulthood and adult service
Recruitment on behalf of Lin Li (Fall 2019 FER Grad)
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This study aims to learn about families’ experiences with the youth’s transition to adulthood and transfer to adult services. We hope to learn about what is working for families, what is not, and what kind of support families need most.
The study involves taking part in a phone or Zoom interview lasting 60 to 90 minutes. A repeat phone/Zoom interview might also be done within 3 months. You will be paid for your participation.
If you are interested in learning more or have any questions, please contact Lin Li at lil73@mcmaster.ca.
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Participate in the Life Beyond Trauma program
Recruitment on behalf of Jeanine Lebsack (Fall 2018 FER Grad)
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Final spots available in the Life beyond Trauma program! Jeanine Lebsack is a parent partner in this program. If you have experienced trauma in parenting your child or in other parts of your life, this might be a helpful program for you. For more information click here.
#lifebeyondtrauma
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Recent Publications
Publication by FER Grad
Effects of Social Isolation and Loneliness in Children with Neurodevelopmental Disabilities: A Scoping Review
The authors conducted a scoping review to assess the impact of loneliness and social isolation among children with neurodevelopmental disabilities (NDD). After reviewing 5,768 citations from three electronic data bases, two reviewers identified 12 articles for data extraction. The scoping review demonstrated that for children with NDD, loneliness is associated with negative consequences on mental health, behaviour, and psychosocial/emotional development.
Authors: Celia Kwan (FER Grad, Fall 2018), Mojgan Gitimoghaddam, and Jean-Paul Collet (Published in Brain Sciences)
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Publication on Patient Engagement in Research
Patient and public involvement in doctoral research: Impact, resources and recommendations
The authors demonstrated the value of patient and public involvement in doctoral research. They identified it's impact on the research process, researchers, and contributors. In addition, the authors provide recommendations on how patient and public involvement in research can be incorporated at all stages of research.
Authors: Nia Coupe and Amy Mathieson (Published in Health Expectations)
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Follow us @FERCourse
Contact us at fer@mcmaster.ca
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