January 2021
Dear FER Students and Alumni,

A safe and meaningful new year to you all!
As we come out of 2020 we have a slightly clearer lens as to how life will be, but not entirely. So, how do we consider the idea of partnership in a new year? I like to think that it involves kindness, flexibility, clear communication, and patience with one another. What are your goals in 2021? How can we help you realize them? Consider sharing your thoughts here in our newsletter. Tell us what you’re up to this year. You also have the option to connect with me at any point of the year as well! Please contact me at lukesbloggermom@hotmail.ca if you have any questions.

Take care,

Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
FER Course Check-In
January 21st, 2021 | 5:00 to 6:00 PM EST
You're invited to join a Microsoft Teams meeting! This is a social opportunity to meet and connect with FER Grads from all cohorts. If you have any questions regarding FER, this is the perfect place for discussion.
Join the meeting on your computer or mobile app.
Luke's Legacy Family Research Rounds
January 28th, 2021 | 7:00 to 8:00 PM EST
CanChild and Kids Brain Health Network are excited to announce a new component to our Family Engagement in Research Training Program! Luke’s Legacy Family Research Rounds is a series of monthly virtual research presentations for families, patients, and researchers. Presentations are designed in a family-friendly format with an interactive discussion component. 
Our first event will take place on January 28th (Thursday) at 7:00 PM EST. The topic of the first session is family well-being, presented by the ENVISAGE (Enabling Visions and Growing Expectations) Research team. They will be sharing their experiences with developing a virtual workshop for parents who are new to the experience of childhood disability. 
For more information, please contact Kinga Pozniak or Rachel Martens at fer@mcmaster.ca.
Calling all family FER graduates!
KBHN is recruiting 1 – 2 Family FER Course Grads to join KBHN’S Research Management Committee (RMC)
The Research Management Committee (RMC) is a Network standing committee that reports to the KBHN Board of Directors and is responsible for active research program evaluation and oversight and providing expertise specific adjudication and recommendations for new Network research project funding applications.
The RMC plans for the next year include at least two oversight/adjudication meetings (approximate timing, February-March & September-October). A new member orientation session is also planned for early in 2021. RMC members are expected to serve a two-year term with the possibility for a second term extension depending on availability and continued Network financial support into 2024. Compensation will be provided.
If you are interested in applying to be on the KBHN RMC, please reach out to us at fer@mcmaster.ca for more information!
Recruiting family members for the Family Advisory Committee for the KidsAction Coaching Project
Project Title: KidsAction Coaching to enhance the development of children with neurodevelopmental and/or intellectual disabilities and to support their families.

This project is currently recruiting family members from across Canada to join their Family Advisory Committee. The Family Advisory Committee (FAC) will play a central role in all stages of the project as we move forward. This Kids Brain Health Network study is being done in partnership with community-based physical activity programs for children with neurodevelopmental and/or intellectual disabilities. The aim is to improve the impact of these programs for children and families through an evidence-based coaching approach. The project involves:

  1. creating the resources, online platform, training modules, and evaluation tools needed for the study; and
  2. evaluating the implementation of KidsAction within community physical activity programs
For more information on how to apply for the FAC, download the Terms of Reference below.
Interested or have questions? Contact Mojgan by email: mgitimoghaddam@bcchr.ca
CP-NET Webinar on Patient Engagement in Research!
February 3rd, 2021 | 12:00 to 1:00 PM EST
Register today for the CP-NET Webinar on Patient Engagement in Research: The value and impact of genuine partnerships! Multiple members of the FER teaching team will be presenting on what genuine patient and family engagement in research means. Five CP-NET projects will be sharing their experiences with patient engagement in research, and a young adult with CP will be sharing his perspectives on patient engagement. You will have the opportunity to ask questions and learn more about how to get involved as a family or patient partner. Download the poster (right) to learn more!
For more information, please contact Alice Soper at sopera@mcmaster.ca
Transition to Adulthood Pop-Up Event
Registration now open!
January 26th - 27th, 2021 | 12:00 to 5:00 PM EST
Make sure to register for the fist Canadian Transition to Adulthood Pop-Up Event!
This event includes Keynote presentations, a facilitated panel with young people, and a showcase of current treatment practices and evidence-based solutions for healthcare transition in Canada. Together, let us promote the best possible health outcomes for youth and families and celebrate what we are learning and doing to help young people to develop fully, even when they are challenged by health conditions. Click the links below to register and for more information on the program and speakers!
Registration Fees and Types:
$50.00 - Patient and Family with Lived Experience
$150.00 - Standard
Congratulations to our FER Grad, Perri Tutelman, whose work along with patient partner, Maya Stern, was featured by the IASP’s Pain Research Forum was featured in RELIEF! 
Celebrating Sibling Partnership in Research!
SibYAC members from left to right: Dana Arafeh, Linda NguyenHanae Davis, Jessica Havens, and Samantha Bellefeuille
In Linda Nguyen’s (Fall 2018 FER Grad) doctoral studies, she partners with the Sibling Youth Advisory Council (SibYAC) to understand the experiences of siblings who have a brother or sister with a disability and preparing for health care transition.

In December 2020, the SibYAC celebrated their partnership and accomplishments for the year, including the design of the BEST SIBS Study, by hosting a virtual holiday event and mailing care packages to each other.
Featured FER KT Tool
The following engagement and self-reflection guides were created by our Fall 2020 Grads, Amanda Binns, Lorrisa Dilay, and Heba Farag. The guides can be used to strengthen relationships within teams and enhance engagement through promoting self-reflection across members of a research team.

There are three components to this tool:
  1. Personal goal setting document
  2. Personal check in document
  3. Facilitation guide designed to promote discussions across group members about each member’s goals and reflections.

Click the links below to download the three components of this tool (goal setting, check in, and facilitation guide)
Download the Engagement and Self-Reflection Tool (above).
Click here to view more KT tools by FER Grads!
FER Grads to join a COVID-19 research team!
We are excited to share that grads Pamela Libralesso and Kate Guzzo-Foliaro are joining Rachel Martens as a part of a research team in an advisory capacity doing COVID-19 research! This study will be examining mental health policies affecting disabled Canadian youth during the pandemic.
Study Recruitment
Youth Engagement in Research: Recruiting now!
We are conducting online focus groups or interviews to hear from youth and young adults (12-25 years) with brain-based disabilities on how we can adapt the Family Engagement in Research course. No prior experience in research is needed to participate. If you know anyone who may be interested in participating, we encourage you to visit our website, share the poster (right), and contact Samantha Yimeng Dong (dongy58@mcmaster.ca
We want to hear from YOU: Transition to adulthood and adult services
In collaboration with family partners, Lin Li (FER Grad Fall 2019) and researchers at McMaster University are leading a study to learn about families’ experiences with the transition to adulthood and transfer to adult services for youth with medical complexity.
We are looking for families (aged 16+) of youth or young adults with medical complexity (aged 18-30) that live in Ontario to participate in this study. The study involves taking part in 1-2 phone or Zoom interviews. Participants will receive a gift card or cheque for participating. Please share this study within your networks and with anyone who might be interested in contributing!

For more information, please download the poster (above) and contact Lin Li at lil73@mcmaster.ca
BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study
We are looking for siblings who: 
  • are 14 to 40 years old 
  • have a sibling who is 14-21 years old with a child-onset neurodisability (for example, autism spectrum disorder, cerebral palsy, Down syndrome, epilepsy, fetal alcohol spectrum disorder or spina bifida)
  • live in Ontario  

Siblings participants will be asked to talk with us in an interview (by Zoom or telephone) and share photographs that describe their sibling relationship. We are offering a $20 e-gift card as a thank-you for participating in this study.
For more information, please contact Linda Nguyen at NGUYEL7@mcmaster.ca, and visit the study website, download the poster (above), or watch the BEST SIBS recruitment video
Recent Publications on Patient Engagement

Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations 
This paper provides a critical reflection on codesign research with vulnerable populations. These reflections include issues to consider in initial planning phases, the implementation process, and final outputs. To address these issues, risks, and tensions at each phase of the process, a tool to prompt reflexive analysis in codesign is presented.

Authors: Sandra Moll, Michelle Wyndham-Wet, Gillian Mulvale, Sean Park, Alexis Buettgen, Michelle Phoenix, Robert Fleisig, and Emma Bruce (BMJ)
Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach
This study aimed to revise the Valuing All Voices Framework by interviewing under-represented populations, including Inuit; refugee, immigrant, and/or newcomer; and/or as a person with lived experience of a mental health condition. Participants' uggestions were incorporated into revisions of the Valuing All Voices Framework, which can be used as a guide in the co-development of meaningful, inclusive, and safe engagement strategies.

Authors: Roche P, Shimmin C, Hickes S, Khan M, Sherzoi O, Wicklund E, Lavoie JG, Hardie S, Wittmeier KD, Sibley KM (Research Involvement and Engagement)
Want to Contribute to the FER Newsletter? 
Inviting all graduates to share with the FER community!

Have something interesting you wish to share with the FER community? Recently published a paper? Know of an upcoming online conference? Recruiting for a research study? Received an award? Add it to our next newsletter and/or Facebook page!

Fill out this form or email us at fer@mcmaster.ca to have it considered for the newsletter and/or Facebook page!
Stay in Touch!
As a graduate of the FER course, you are part of our FER Alumni community. We hope you will stay in touch with us through joining the FER Course Fellows Group on Facebook (contact Rachel Martens at lukesbloggermom@hotmail.ca if you wish to join).
Stay Connected!
We have so very much appreciated the continued conversation you've started on social media about the course. Your experiences shared on Facebook and Twitter help build the community of course grads ensuring best starts in family partnerships in research. Talking about family engagement in research online? Consider tagging us at: @FERCourse
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