Happy May Everyone!
There’s a lot going on with the FER Team! Much like the spring weather and finally putting my garden in, we’re hoping for good things to grow.
We will be reconfiguring the FER Check-ins into a few new initiatives including Community of Practice Extended Learning opportunities. Our first one will be on cultivating stakeholder relationships through social media during the pandemic, so stay tuned!
Have a topic that you’d like to see covered? Would you like to share a best practice in family engagement? Let us know! You can now reach me at my new email martensr@mcmaster.ca
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
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Luke's Legacy Family Research Rounds
May 26th, 2021 | 7:00 to 8:00 PM EST
Parenting a child with a rare condition
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FER Course News
Help us with recruitment!
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We are excited to announce that the Family Engagement in Research Course is now accepting applications from family members and researchers interested in health research for the Fall 2021 and Winter 2022 cohorts.
We encourage you to reach out to family, friends, colleagues, etc., who may be interested and to share the following information:
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For more information please contact Alice Soper at fer@mcmaster.ca
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Introducing our new Course Coordinator - Sam Micsinszki
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In FER Course news, Andrea Cross has officially gone on maternity leave and we wish her and her family all the best with the upcoming arrival of their newest addition! Sitting in for her will be FER Grad (Winter 2019) Sam Micsinszki. Sam is a Postdoctoral Fellow hailing from Toronto, Ontario working with Dr. Michelle Phoenix on the McMaster University Co-Design with Vulnerable Populations Hub.
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Sam first became interested in patient and family engagement through participating in the FER course two years ago. She is a registered nurse and has always been interested in the experiences and perspectives of families, but her work prior to the FER course did not include families as partners on the research team. Through the FER course and critical reflection on her previous work, she came to fully understand the value that patient partners can bring to research. Sam sees patient and family engagement in research as an opportunity for partnership, and a way to help answer questions that are important to families. |
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Spotlight on FER Grads
Congratulations!
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FER Grads Jessi Lewis, Jessica Baraskewich, and Vanessa Fong are this year’s Kids Brain Health Network and the Canadian Autism Spectrum Disorder Alliance (CASDA) Policy Development Practicum Fellows. They will focus on the co-production of a policy brief representing one of Canadian Academy of Health Science’s three critical areas of the National Autism Strategy: Social Inclusion, Economic Inclusion and Evidence-Based Interventions.
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FER Grads (Fall 2020) Fakhri Shafai, Nicholas Denomey, Laurel Ryan, and Jessica Baraskewich developed a podcast that explores the issue of engaging populations that are statistically less likely to be engaged in research. Specifically, they focus on fathers, Indigenous Canadians, newcomers to Canada, and lower-income earners. They discuss barriers to participation in these groups and strategies researchers have used to facilitate higher representation from these populations in their research.
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Kristy Wolfe's digital storytelling
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FER Grad (Winter 2021) Kristy Wolfe’s experience as a medical mom lies at the heart of her passion for storytelling photography. Based in Canmore, Alberta with her husband and two sons, she has been telling stories through photography for the past 8 years. But Kristy's most recent projects are about teaching others how to narrate their own experiences through photography and digital storytelling. She recently took the Digital Storyteller Facilitator Training with Mike Lang through his company Common Language DST. Part of the training was for each participant to create their own digital story, a short 3-5 minute video. Kristy's digital story, Today, shares some of what it is like to be a medical mom and a storytelling photographer, as well as focusing on the importance and challenging aspects of taking time for yourself. To see additional digital stories co-created with Kristy visit Digital Stories Project playlist.
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Connect with Kristy if digital storytelling is of interest to you personally or as a part of an organization or research project: |
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Waiting Room Revolution Podcast Episode
with Donna Thomson
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For the Waiting Room Revolution Spring Series, Donna Thomson, FER Co-instructor, author, caregiver, and activist, is featured in a 20 minute conversations with innovators who make the experience of serious illness better.
For more information on the Waiting Room Revelation, click here
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Recognition and celebration in the art of sibling science
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The Sibling Youth Advisory Council (SibYAC) was established as a research partner in the doctoral studies of CHILD-BRIGHT READYorNot™ Project Graduate Trainee, Research Assistant, and FER Grad (Winter 2019), Linda Nguyen. In April 2021, the SibYAC presented their experiences about their roles as siblings at home, careers, mental health and research including the BEST SIBS Study, at Luke’s Legacy Family Research Rounds. They celebrated their partnership in this initiative with a virtual social dinner.
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Pictured clockwise from top left in photo: FER Grads (Winter 2019), Samantha Bellefeuille and Linda Nguyen, Hanae Davis, and Jessica Havens.
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Funding Opportunities
Strategic Investment Fund 2021
DEADLINE: June 25th | 5:00 PM PT
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This funding initiative will support new evidence-based projects that demonstrate a strong, near-term potential to bring impact to communities in several areas (e.g., changes in practice or policy, advancing new technologies, establishing new applications for existing technologies, and expanding or scaling direct supports families).
KBHN is now accepting Letters of Intent for this competition.
Successful project teams may request up to $100,000 for either 1 or 2 years.
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FER Engagement Opportunities |
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Alberta SPOR SUPPORT Unit:
Patient Engagement Platform
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The Patient Engagement (PE) Platform matches individuals with lived experience (e.g., family member/caregiver, patient, friend, etc.) with researchers to partner as equal members on health research teams. This includes engagement of individuals with lived experience at all stages of the research process. The PE Platform thus provides ongoing support to patient partners, researchers, and community organizations to enhance collaboration and engagement. |
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Study Recruitment
Patient Engagement in Research Training Opportunity
Recruitment on behalf of Sam Micsinszki (Winter 2019 FER Grad)
Looking for childhood disability researchers, trainees, youth & families to participate in a research study testing the usefulness of simulation-based training workshop about #partnering and #engagement in #research!
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Recent Publications
Publication by FER Grad
Engaging clinicians and graduate students in the design and evaluation of educational resources about universal design for learning
FER Grad (Winter 2020), Vanessa Thomas demonstrated how an instructional design model and knowledge translation theory could be applied to develop educational resources about Universal Design for Learning (UDL) for speech-language pathology graduate students. She and her research team assessed the feasibility of the resources and the changes in students’ knowledge of UDL. They found that the 19 students who participated reported that the resources were practical, acceptable, and increased their knowledge of UDL.
Author: Vanessa Thomas, Patricia Solomon, Justine Hamilton, Wenonah Campbell
(Canadian Journal of Speech-Language Pathology and Audiology)
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Publication on Patient Engagement in Research
Partnering with patients in the production of evidence
In this article, the authors highlight the challenges within patient and researcher partnerships and describe the strategies on how researchers can better engage patient partners involved in evidence based medicine. Perceived challenges identified by the authors included identifying patients and caregivers, engaging vulnerable populations, involving patients in grant writing and in research methodology. In addition to highlighting strategies that address perceived challenges, the authors also list useful resources for patient involvement in research.
Authors: Peter J. Gill and Emma Cartwright
(General Medicine)
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Follow us @FERCourse
Contact us at fer@mcmaster.ca
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