Researchers and Families Connecting in Research
Why is Family Engagement in Research (FER) Important?
We share with you how we think that we can overcome barriers and bring researchers and families together.
Are you a parent or researcher interested in FER?
If you are (or you’re not sure), you’re in the right place. We share our thoughts on what you need to know when getting started.
Who we are
We are two parents of children with cerebral palsy (CP) and two CP researchers who met on the McMaster University/Canchild/Kids Brain Health Network Family Engagement in Research Certificate of Completion Program. While we live and work in different parts of the world, we share a common interest in FER.
What is FER?
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Family and patient engagement means that patients and/or family members work with researchers during one, multiple, or all parts of the research process.
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This may include working together to identify research questions, developing methods, analyzing results, and translating research findings into clinical practice.
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FER broadens the role of a parent beyond that of a research subject, engaging them as meaningful and active partners of the research team.
(Please see detailed references below)
Download our FER Stickers
We have created these stickers as a tool to spread the word about FER and build connections especially in the CP community. They are available in English and Dutch, and each contain a QR Code that links back to this page.
You are free to download and share the stickers however you wish. We have designed them so that they can be shared in old fashioned physical formats and digitally in social media.
We start you out with some ideas…
- Download and print physical stickers to hand out at clinics, community centres, CP social days.
- Download and create pin badges from the stickers to be worn at CP sports days.
- Download and print magnets that can be displayed on your refrigerator at home!
- Use the sticker as a social media badge to be collected and added to your social media profile as you progress along the FER journey.
- Use the sticker as profile picture in your social media to signal your interest to others.
- Healthcare workers / researchers could make pin badges from the stickers and wear them in consultations or clinics.
ENGLISH
DUTCH
Video Series
Please note we have compiled these videos based on our own personal experiences.
Why should I do FER as a researcher or a parent?
“FER could really help to steer research towards things that matter to us and our children” – Robyn
Robyn – Parent
Lynda – Parent
Stacey – Researcher
Fenna – Researcher
What should researchers know about how to approach families to engage in research?
“Researchers need to consider how we can ensure all parents have the opportunity to participate
and how parents want to be approached” – Fenna
Fenna – Researcher
Lynda – Parent
Robyn – Parent
What do researchers need to do to support parents as partners in research?
“A partner is a face who understands the emotionally sensitivity and also the value of research” – Lynda
Lynda – Parent
Robyn – Parent
What can be done to support FER?
“When you’re starting, ask lots of questions and ensure there is time to build a partnership – Stacey
Stacey – Researcher
Watch Our Videos In One go
Are you interested in learning more about FER?
CanChild is a research hub at McMaster University in Canada focused on research on children and youth with disabilities and their families.
Click the CanChild logo above to visit CanChild’s section on Family and Patient Engagement in Research. Here you can learn more about what it is strategies and available resources.
Kids Brain Health Network (KBHN) is a Canadian network of researchers and health professionals dedicated to helping children with neurodisabilities and their families. Click on the KBHN logo above to find out more!
If you are interested in neurodevelopmental research and looking to learn more about family-researcher partnerships, consider applying a 10-week online Certificate of Completion Course on Family Engagement in Research offered by Kids Brain Health Network, CanChild, and McMaster University in Canada.
The course is designed for researchers (graduate student research trainee, research coordinator, investigator, etc.) and family members of a person with a disability.
Visit the FER course page by clicking on the McMaster University logo above.
References
Aubin, D., Hebert, M., & Eurich, D. (2019). The importance of measuring the impact of patient-oriented research. Canadian Medical Association Journal, 191 (31), E860-864. https://doi.org/10.1503/cmaj.190237
Black, A., Strain, K., Wallsworth, C., Charlton, S.G., Chang, W., McNamee, K., & Hamilton, C. (2018). What constutes meaningful engagement for paents and families on research teams? Journal of Health Services Research & Policy, 0(0), 1-10. https://doi.org/10.1177/1355819618762960
Curran, J.A., Bishop, A., Chorney, J., MacEachern, L., & Mackay, R. (2018). Partnering with parents to advance child health research. Healthcare Management Forum, 31(2), 45-50. https://doi.org/10.1177/0840470417744568
Morris, C., Shilling, V., McHugh, C., & Wya, K. (2011). Why is it crucial to involve families in all stages of childhood disability research. Developmental Medicine and Child Neurology, 53(8), 769-771. https://doi.org/10.1111/j.1469-8749.2011.03984.x
Rouleau, G., Bélisle-Pipon, J.C., Birko, S., Karazivan, P., Fernandez, N., Bilodeau, K., Chao, Y.S., de Pokomandy, A., Foley, V., Gagnon, B., Gontijo Guerra, S., Khanji, C., Lamoureux-Lamarche, C., Lebouché, B., Lunghi, C., Menear, M., Riverin, B.D., & Rodrigue, C. (2018). Early career researchers’ perspectives and roles in patient-oriented research. Research Involvement and Engagement, 4, 35. https://doi.org/10.1186/s40900-018-0117-z
Vat, L.E., Ryan, D., & Etchegary, H. (2017). Recruing paents as partners in health research: a qualitave descripve study. Research Involvement and Engagement, 3, 15. https://doi.org/10.1186/s40900-017-0067-x
Copyright
This resource was created as part of the McMaster University, CanChild, and Kids Brain Health Network Family Engagement in Research Certificate of Completion Program. Copyright © 2022 (Fenna Walhain, Lynda Moore, Robyn Evans Cunningham and Stacey Miller). All Rights Reserved.
