Happy New Year everyone!
I hope wherever you are that you're experiencing sunny days. It's a new year and I know for a million reasons, you're probably very tired or overwhelmed. I just wanted to take an opportunity to thank you so much for all your hard work and remind you in case nobody said it to you today that you're doing your best!
Your continued energy to commit to family engagement does not go unnoticed by others.
We want to remain an accessible community to you in ensuring that you're supported through this challenging time. That comes with recognizing needs that our team may not be aware of. Please do not hesitate to connect with either myself or anyone else from the team should you have any questions or require support.
Do you have a subject you'd like to learn more about? Be sure to let us know! Wishing you, health and safety as you move forward into this new year!
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
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Welcome Winter 2022 FER Students
We are excited to welcome 33 students in the 8th cohort of the Family Engagement in Research course! We are looking forward to the start of the course next week!
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Luke's Legacy Family Research Rounds
January 26th 2022 | 7:00 to 8:00 PM EST
Employment: The Gold Standard for Inclusion
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Introducing Vanessa Tomas, our new FER co-instructor/coordinator |
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Vanessa Tomas, M.Sc., is a Ph.D. Candidate in the Rehabilitation Sciences Institute and Collaborative Program in Neuroscience at the University of Toronto. She is conducting her Ph.D. research at the Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital. She also works part-time at CanChild as a research assistant and actively engages as a trainee with additional organizations, such as Kids Brain Health Network. |
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Vanessa became interested in engaging end-users of research throughout the research process in her Masters of Rehabilitation Science with CanChild, McMaster University. For her Masters, she engaged with clinicians to develop and evaluate knowledge translation tools for clinical trainees. Throughout her past / current research assistant work at CanChild, Vanessa learned about and has supported different projects where families were / are engaged throughout the research process. For her PhD research, Vanessa is engaging youth and young adults on the autism spectrum. Vanessa is also a graduate of the FER course (winter 2020)! Through these vast, enriching experiences, Vanessa has seen the profound impact that engagement has on research goals, processes, outcomes, and impact. Additionally, the value in building strong, trusting partnerships that foster a sense of community (and often friendship)! We can break down barriers between researchers and research end-users (families) and embrace the unique, invaluable experiences and knowledge that each of us brings to the table. |
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Congratulations to FER Grad, Emily Bremer on being named Acadia's newest Canada *Research Chair in Healthy Inclusive Communities!
Dr. Bremer’s appointment is part of the Canada Research Chairs Program $550-million investment in new and renewed Chairs across Canada to attract global talent and increase diversity.
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*Research Chairs are world-class faculty whose positions are supported by targeted funding from a funding agency. |
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Communication is the foundation for Family Engaged Research. This video by FER Grads Lisa Kakonge and Carrie Miller, and inspired by Breanne Bruce, explains how a tool called the Involvement Matrix can support and encourage researchers and family partners to communicate their expectations and preferred roles for a research project!
Find out more about the Involvement Matrix here.
If you would like a PDF text transcript of the video, please click here.
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FER Grads awarded CIHR grant to study experiences of children with disabilities during COVID-19!
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Olaf Kraus de Camargo along with a number of CanChild researchers and parents (Kinga Pozniak, Wenonah Campbell, Genevieve Currie, Danijela Grahovac, Amanda Doherty-Kirby, and Jeanine Lebsack) received a CIHR grant called "COVID Time Capsule: Learning from Covid-related experiences of children with disabilities and their parents to improve health supports and services".
The study will use creative visual methods to explore the experiences of children or youth with disabilities and their parents throughout the COVID pandemic to understand:
- what supports and services these families need, now and into the future; and
- what practices and models of care are needed to mediate the negative effects of COVID on these families and protect them against future adversities.
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FER Grad Pitch Finalist for Children's Heart Network
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FER Grad, Kristy Wolfe and her fellow heart mom, Jennifer Siran, are one of the eight finalists pitching an idea to support cardiac kids and their families.
We encourage you to register to watch and one of the projects will be funded by audience vote.
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FER in Action:
FER Grad welcomes the New Year with sibling partners
In 2018, the Sibling Youth Advisory Council (SibYAC) was established by FER Grad, Linda Nguyen as partners in her doctoral studies to understand the experiences of siblings who have a brother or sister with a disability during the transition to adulthood.
The SibYAC have an annual holiday tradition to celebrate their partnership. To welcome the new year, they held a virtual social dinner and had customized mugs mailed to each member.
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Clockwise from top left: James Koutrakos, Linda Nguyen (FER Grad), and Samantha Bellefeuille (FER Grad)
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Upcoming Conferences and Webinars
WCHRI Learning Session: writing a lay abstract
January 26th 11:30-1:00pm CT
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Webinar on utilizing TikTok to share research
January 20th 7:00-8:00pm ET
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TikTok has become a new platform for knowledge exchange. This webinar was born out of a conversation with some graduates of the FER Course who identified a knowledge gap on how to effectively use this platform. Come join us for an informal chat about current best practices and a brief tutorial. Plus methods on how to use your videos between social media platforms!
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CHILD-BRIGHT Network Patient-Oriented Research Discussions
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CHILD-BRIGHT launched its inaugural Patient-Oriented research Discussions (PODs) series to enhance the exchange of ideas between all stakeholders within the CHILD-BRIGHT network. Each session will be hosted by a presenter who will pick the topic and resource(s) for discussion, and will consist of a 60-minute exploration of the resource/topic as well as an optional 30-minute networking opportunity. Click here for more information and click the topics below to register.
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FER Employment and Engagement Opportunities |
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SickKids Family Advisor Opportunity |
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Francine Buchanan (FER grad) is addressing the challenge of getting connected to available research studies. Francine has launched SickKids' new PEiR Program. Although this program is based at SickKids, they are looking for advisors from across Canada with all types of lived experience related to healthcare, disability, chronic disease or seeking/accessing care. You do not need to have an experience at SickKids to apply.
We also want to remind any research graduates of the FER course who have lived experience as a patient, caregiver, or sibling of a patient to consider applying. One goal of this program is to make it a low barrier program so please apply.
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Workshop with SPOR Northwest Virtual Institute:
Options and Considerations to establishing a Patient Advisory Council for research projects
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This hands-on workshop @SPORNorthest reviewed options and considerations that can support the development and establishment of PAC. Need guidance to set one up? This session will provide lots of tips. |
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Recent Publications
Publication by FER Grad and Affiliate
Informing the development of the Canadian Neurodiversity Platform: What is important to parents of children with neurodevelopmental disabilities?
In collaboration with a parent-partner, we conducted a study to know if questionnaire items based on the International Classification of Functioning, Disability and Health (ICF) framework are feasible for collecting data on neurodiverse children using a national platform. Parents provided feedback at the questionnaire development stage to ensure the platform could generate relevant data and outputs. Through focus groups, parents rated items as important or feasible to complete, provided additional suggestions for the questionnaire, and shared their caregiving experiences. Obtaining feedback from neurodiverse youths and healthcare providers on the questionnaire is a critical next step to develop a platform that will benefit knowledge, advocacy, and inform policies to support families.
Authors: Miriam Gonzalez, Shikha Saxena, Farhin Chowdhury, Sasha Dyck Holzinger, Rachel Martens, Maryam Oskoui, and Keiko Shikako‐Thomas
(Child: Care, Health and Development)
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Publication on Family/Patient Engagement in Research
Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement
The authors reviewed 235 yearly project reports and 40 mid-year reports from researchers and 260 voluntary surveys from stakeholder partners. They aimed to describe common engagement challenges that the teams experienced in the first two years of their projects and promising strategies used to respond to these challenges. The authors found three areas of engagement challenges: 1) infrastructure to support engagement; 2) building relationships; and 3) maintaining relationships. Infrastructure challenges included ensuring financial support and staff time, finding a diverse group of patient and stakeholder partners, and recognizing partner needs. Challenges in building and maintaining relationships included how investigators and stakeholders communicate and share ideas when working together on research projects. Researchers and stakeholders described strategies in the same three areas. Results help identify ways that more resources, training, and policies, as well as researcher and stakeholder practices, make engagement in research easier and more effective.
Authors: Andrea Heckert, Laura P. Forsythe, Kristin L. Carman, Lori Frank, Rachel Hemphill, Emily A. Elstad, Laura Esmail and Julie Kennedy Lesch
(Research Involvement and Engagement)
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Contact us at fer@mcmaster.ca
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