April 2021
Hi Everyone!

Happy Canadian spring day to you all!
I hope that wherever you are, that you are safe and doing well. The FER team is celebrating another successful completed cohort and have learned a lot from our students (as we always do)! As we move towards the Fall cohort, we are beginning to imagine new ideas on how best to support you in your research partnerships.
We would love your help! We are examining the potential benefits of a website or online hub to support connections between families and researchers. There have been some initial conversations about needs and there will be more opportunities in the near future to engage in further dialogue. If you're interested in an example of an engagement platform, take a look at the Saskatchewan SPOR research network. If you would like to help with planning this initiative please connect with me at lukesbloggermom@hotmail.ca.

Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
We are excited to announce that the Family Engagement in Research Course is now accepting applications from family members and researchers interested in neurodevelopmental 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:

For more information please contact Alice Soper at fer@mcmaster.ca
Luke's Legacy Family Research Rounds
April 28th, 2021 | 7:00 to 8:00 PM EST
The Art of Sibling Science
Huge congratulations to FER Grad (Winter 2019) Perri Tutelman who was awarded a 2021 Research Impact Canada Engaged Scholarship Award (PhD category). As part of this award, she and her patient partner, Julia MacLeod, have been invited to present at the Canadian Association of Research Administrators (CARA) Conference, “The Future of Knowledge Mobilization” on May 13th 1:00- 2:30 (EST).
Featured FER KT Tool
FER Grads (Fall 2020), Sandrine Gagné-Trudel, Alain Chatelin, and Christelle Pons, created a comic about family partnership and empowerment in research. The comic is available in both English and French and can be downloaded by clicking the pictures below.
A Must Read Book by FER Grad on Cerebral Palsy
Spastic Diplegia - Bilateral Cerebral Palsy
Spastic Diplegia–Bilateral Cerebral Palsy was written by FER Grad (Winter 2021) Lily Collison, the parent of an adult son with CP and medical sciences graduate, in close collaboration with senior medical experts at Gillette Children's Speciality Healthcare. All proceeds from the book go to CP research.

An empowering and evidence-based guide for living a full life with spastic diplegia, the book addresses the development and treatment of the condition across the lifespan – from childhood right through to adulthood. While this book focuses on spastic diplegia, much of what is addressed also applies to other forms of spastic CP at GMFCS levels I to III, namely hemiplegia and quadriplegia. The book is available on Amazon, ebook platforms, and to order through bookstores (ISBN 978-1952181009). 
FER in Action!
Follow @FER_InAction, developed by FER Grads!
FER Grads (2021) Angelica Blais, Maeghan James, Elise Bloch and Clara Pina developed a Twitter account (@FER_InAction) as a knowledge translation tool. The purpose of the Twitter page is to highlight effective strategies, tools, and experiences in family engagement in research targeted at both researchers and families. Please feel free to follow the page and share it with your network.
Upcoming webinar on advocacy with Rachel Martens
May 6th, 2021 | 1:00 to 2:00 PM EST
Understanding Systems to Advocate Within Systems: Creating Optimal Reach With Your Message
Join FER Research Engagement Strategist, Rachel Martens, as she talks about the creation of meaningful and tangible advocacy goals and how understanding health or political systems can aid in helping you achieve them. The Children’s Healthcare Canada Family Network is open to any family member or caregiver of a child or youth receiving services from one of our member organizations. To attend the webinar, you must become a member by completing this form.
CHILD-BRIGHT Virtual Symposium
May 26th, 2021 | 11:00 AM to 3:00 PM EST
 Let’s Dream Together as we Look Forward
On May 26th, patients, families, trainees, staff, and faculty are invited to attend the 2021 CHILD-BRIGHT Virtual Symposium: Let’s Dream Together as we Look Forward with Project Updates, Posters, and Questions. In addition to featuring active work being done by CHILD-BRIGHT’s research teams, we are also welcoming abstract/summary submissions for posters from external groups focused on childhood brain-based developmental disabilities. This is an ideal venue for you to submit abstracts on your Knowledge Translations Tools from the FER course.
SKIP Webinar
Engagement is Key! A Patients-Included Approach to Knowledge Mobilization
The team from Solutions for Kids in Pain (SKIP) discuss how patients and the patients-included approach can enhance knowledge mobilization, as well as research as a whole. Click the video below to watch the SKIP webinar.
Join the Pediatric Parents’ Consultation Network
The Pediatric Parents’ Consultation Network (P-PCN) is a diverse group of parents, legal guardians, and grandparents across Canada seeking to contribute to child health research. Members form a virtual network and provide online feedback about research aimed at improving child health outcomes.

Get involved if you are:
  • A parent, grandparent, or legal guardian of a child;
  • Wanting to contribute to child health research;
  • Interested in helping improve the health system and;
  • Have access to the internet and an active email account.
Recent Publications

Publication by FER Co-Developer/Co-Instructor
What’s Your Why? This is mine—why my family participates in research

FER Co-Developer/Co-Instructor, Donna Thomson, describes why she decided to get involved in research with her son. Donna Thomson has been involved in research as a Citizen Engagement Council member and Patient-Partner with the Strongest Families ND and READYorNot™ research projects. (Published by the CHILD-BRIGHT Network)
Publication by FER Research Engagement Strategist
I Lost My Son Six Months Ago — A Beautiful Boy Who Shaped Who I Am

Research Engagement Strategist, Rachel Martens, reflects on the passing of her son and his impact on her life and in finding a collaborative community within patient-oriented research. (Published in CBC Parents)
Publication on Patient Engagement in Research
Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

The authors, including researchers and patient partners, aimed to adapt the original Patient Engagement In Research Scale (PEIRS-37), which is used to assess the degree of meaningful engagement of patient and family caregivers in research. The goal of adapting the PEIRS-37 was to shorten it to its most essential items. The shortened PEIRS included 22 items (PEIRS-22) and demonstrated validity and reliability for assessing meaningful engagement in research. Ultimately, the PEIRS-22 enables standardized assessment of patient and family research engagement. 

Authors: Clayon B. Hamilton, Alison M. Hoens, Annette M. McKinnon, Shanon McQuitty, Kelly English, Lisa D. Hawke, and Linda C. Li. (Published in Health Expectations)
Stay Connected!
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Contact us at fer@mcmaster.ca
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