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Greetings FER Alumni!
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Dear FER Course Fellows,
I know time seems to sort of bleed together as of late, but I hope that in whatever you are up to you are finding ways to fill your day that are meaningful to you. This has been a time of self-reflection for me personally but also one to ask a lot of questions and put them out into the world. As a parent of a disabled child, I've been thinking a lot about the knowledge gained in research partnerships and how we can effectively broker that knowledge out to the world. Some of these questions came in the form of a recent blog post. I don't claim to have all the answers, but should you have a reaction to what I wrote, please feel free to email me at [email protected] and let's chat!
This is a time to ask a lot of relevant questions. I recently had the opportunity to connect with one of the members of the federal disability advisory panel to discuss the status of childhood disability research and what we can do together to move ahead. You can read more about the session here.
Last week, I had the privilege of speaking with the research advisory council at Sick Kids Hospital. We had an enlightening conversation about how as the world moves back to "normal", how it is our hope that research engagement acknowledges this pause that the world has taken. That we begin to see the raw need for us to work together and ensure that we see effective and meaningful results together!
We hope that this newsletter as well as the Facebook group (FER Course Fellows) becomes a place for knowledge exchange and meaningful dialogue. Have work you'd like to share with the rest of the alumni? Are you recruiting for an upcoming study? Have a good news story? Connect with us and share by filling out this
google form,
and we will add it to upcoming newsletters.
Rachel Martens
Engagement Officer
Kids Brain Health Network
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Applications Now Open for Fall 2020 and Winter 2021 FER Cohorts
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We are now accepting applications for Fall 2020 and Winter 2021 FER cohorts! If you know anyone who may be interested or can share with your networks, here is the link to the application form:
https://is.gd/FERcourseregistration
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COVID-19 and its Effects on Research: A Family Partner Interview
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Jeanine Lebsack Warman, Saskatchewan
(Fall 2019 FER Course Graduate). |
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We hope to feature how the experiences of researchers and family partners may have changed during COVID-19. There's a great opportunity here for us to feel connected even though we are apart. Interested in sharing your experiences? Email Rachel at
[email protected]
Today we will be hearing from
Jeanine Lebsack from Saskatchewan (Fall 2018 FER Course Graduate). Jeanine is currently
working as Chair of the Parent Advisory Committee on a research project based on PTSI of parents of neurodiverse children.
How has it been balancing life in a pandemic with research?
Balancing life during a pandemic while working in research has been challenging. As a lot of new research has been COVID-19 related, and my current study isn't about that. Yet the changes to research material had to be improvised due to the pandemic. Waiting for ethics approval has been a whole lesson on patience as well. It's a new learning curve as the world has been put on pause for the last few months.
Has there been dynamics of the FER course that have helped you along the way?
Absolutely! The amount of research material that needed to be read and feedback given from the FER program prepared me for working on the PTSI study. Also working with a team towards a common goal has been valuable. That was my favourite part of the FER course, was having a research partner. With knowing the phases and structure of what a research study is all about is the most pertinent experience of being involved in my current project.
What's something you've learned about yourself during quarantine?
I've learned that no person is an island. I've had to ask for help a lot more than I've been comfortable with. Yet I've learned a lot about how important connection is in my personal and professional life. Calling in my support team helped me be more gentle with myself as I was working from home and Google classroom homeschooling (with the help of my son's teachers). Ultimately I realized that I have two choices during this uncertainty, to except the pause and reset that the pandemic offers me and live my best life, or let my choices and actions be ego driven and less from a caring heart leading to a chaotic and negativity infused life. I chose my heart over my ego, connection over criticism, and listening more and talking less. Honestly it's the best decision I've made in my adult life. As we all know there's no manual of how to get through life during a pandemic. The strength is in the doing, not the complaining about things I'm unable to do.
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Virtual Conference Sessions and Podcast Featuring FER Grads!
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2020 CHILD BRIGHT Virtual Symposium Session Recordings Now Available
The 2020 CHILD-BRIGHT Virtual Symposium was a series of 4 virtual sessions that showcased innovative work focused on childhood brain-based developmental disabilities. Recordings of each presentation are
archived.
Three presentations were led by FER alumni,
Linda Nguyen, Kinga Pozniak, Samantha
Bellefeuille, Lindsay Richter, which are featured below.
Go Far, Go Together: A Journey of Collaboration with Youth and Families for the READYorNot Brain-Based Disabilities Trial
Presenter: Linda Nguyen
Co-presenters: Kinga Pozniak (parent partner and postdoctoral fellow) and Kyle Chambers (youth partner)
Sibling Engagement in Research: An Illustrative Example of a Sibling-Researcher Partnership To Design a Study
Presenter: Linda Nguyen
Co-presenters: Hanae Davis (PhD Candidate and sibling partner) and Samantha Bellefeuille (sibling partner)
Parent Integrated Evidence-based Practice to Improve Quality ("Parent-EPIQ"): Meaningful outcomes for parents of very preterm children
Presenter: Lindsay Richter
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Podcast Guest!
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Francine Buchanan
discusses how patient partners should be supported to elevate their skills and knowledge so they can contribute to heath care improvement and system change, as experts in their own right. Expertise Part 2, with Francine Buchanan, is the second part of a two part podcast series on patient expertise.
Expertise Part 1, with Frank Gavin
Expertise Part 2
, with Francine Buchanan
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SUBMIT AN ABSTRACT: The #ChildHealthCan2020
Do you have a program, project or initiative you'd like to feature on the Children's Healthcare Canada virtual stage? The Children's Healthcare Canada flagship annual conference has updated the 2020 Call for Abstracts to match the new conference format and are now accepting abstracts for three different aspects of our program.
- The Virtual Poster Fair
- Concurrent Sessions
- How COVID Changed My Practice
The 2020 call for abstracts will be open until July 15, 2020.
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APPLY FOR: Graduate Student Fellowship in Patient-Oriented Research
CHILD-BRIGHT has launched a Graduate Fellowship Award in Patient-Oriented Research! A total of $50,000 in funds is available. View eligibility requirements and apply by July 17
here.
KEY DATES
Application Deadline: July 17, 2020
Expected Notification of Results: August 17, 2020
Anticipated Funding Start Date: September 1, 2020
Anticipated Funding End Date: August 31, 2021
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COVID-19 Updates
WATCH: Working together to beat COVID-19: engaging and involving patients and public
The presenters in the videos provide a forum to discuss, debate, and share information on how and to what extent the public and patients are engaged and involved in discussions and research related to COVID-19. The intention is to use discussion from the webinar to inform an opinion article about patient and public involvement and engagement and COVID-19. For more information click
here.
Have a Question About Disabilities & COVID-19? Submit to My COVID Disability Q.!
We continue to invite youth with disabilities and their family members to use the My COVID Disability Q. Twitter Q&A hub to ask their questions relating to disabilities and the ongoing COVID-19 situation and get credible answers from some of Canada's leading disability experts. We have already fielded several questions on topics ranging from at-home leisure resources to financial aid and the impact of COVID on transition to adult care.
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Partnership Opportunities and Invitations
Partnership Opportunity:
For implementation scientists, researchers, and planners of health system teams!
As part of planning for AbSPORU Phase 2, the KT Platform is working to launch one of its flagship initiatives: a service to facilitate academic-health system research partnerships that study the effective implementation of evidence. Through this service, the KT Platform will be able to help embed academic researchers or teams into health system implementation initiatives to provide theory-based planning guidance and evaluate real-world projects. In turn, these collaborations will help identify what implementation methods work in Alberta, why, and for whom.
To launch this initiative, the KT Platform is currently taking stock of all the implementation scientists/researchers, implementation support offices, and teams that evaluate implementation in the province.
If you're an implementation scientist, researcher, planner, or evaluator or are part of a health system team interested in implementation partnerships, please contact Stephanie Brooks [email protected] to be included in our list of interested collaborators.
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Global Report on Developmental Delays, Disorders and Disabilities
Invitation to organizations in Canada
What is the Global Report on Developmental Delays, Disorders and Disabilities?
A number of international policy and advocacy organizations, including the World Health Organization, UNICEF, and Autism Speaks are putting together a Global Report on Developmental Delays, Disorders and Disabilities. The Global Report will be used to increase awareness and provide guidance on strengthening health systems and multi-sectoral actions for children and youth with developmental delays, disorders and disabilities and their families. The Global Report has acquired new significance as affected individuals and families confront new challenges and barriers resulting from the COVID-19 pandemic.
THE Global report SURVEY
A 30-minute online survey (available in English and French) is being used to capture the experience of caregivers of a child (at any age) with any developmental delays, disorder or disability in Canada. The survey explores their lived experience in caring for children with developmental delays, disorders, and disabilities. Topics include response to the pandemic, access to care, mental health impact, and coping. Participants will be offered a $15 gift for completing the survey.
How can your organization contribute?
Drs. Mayada Elsabbagh and Keiko Shikako-Thomas (McGill University) are the focal point researchers facilitating data collection in Canada. They are inviting all interested organizations to disseminate the Global Report Survey in their communities across Canada. Please contact us if you would like your organization's logo to appear on the survey homepage. Participating organizations will receive periodic updates about the results and how they are being used to inform policy locally and internationally.
HOW do I invite caregivers?
We invite organizations to disseminate the survey through their preferred channels, e.g., website, social media, mailing list.
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Register for Upcoming Webinars and Virtual Conferences!
Partnering During a Pandemic:
Children's Healthcare Canada and CHEO share how they implemented stakeholder partnerships during the current pandemic. For more information about the webinar series, click
here.
To register for the webinars listed below and to watch past webinars, click
here
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SAVE THE DATE FOR #KBHNConf2020: New and Emerging Ways of Connection
With sessions across four days, the KBHN Conference will focus on these challenges and innovative solutions along with the vital role of technology, innovation and policy decision-making in an ever-changing world. For more information about the virtual conference, click
here.
Save the Date (November 9-14, 2020) and join our annual flagship conference.
#KBHNConf2020
Dates: November 9-13, 2020
Location: Virtual Conference
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CHILD-BRIGHT Summer Learning Series:
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Learning Together: The Use of Simulation to Enhance and Enable Authentic and Meaningful Research Partnerships
E
vidence shows that involving patients and their families in applied clinical research can enhance the relevance, quality, impact, and utility of research findings, but also comes with multifaceted and complex challenges. In this webinar, step into an interactive simulation and see firsthand the value of using simulation as a learning tool to help this collaborative process.
Register and join us on July 21 for this session, moderated by Michelle Phoenix (McMaster University), Kathryn Parker and Nadia Tanel (Holland Bloorview Kids Rehabilitation Hospital). |
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Last Call for Recruitment!
ENabling VISion And Growing Expectations (ENVISAGE) Research Study
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The final ENVISAGE program in Canada will run Monday evenings at 8 pm EST, July 20th - August 17th.
What is Envisage?
Contemporary 21st century ideas about health and disability are changing the way we think, act, and talk about childhood disability. These ideas have been 'packaged' into a program of five interactive workshops for parents. Watch the video below for more information!
Who can get involved in the study
?
We are looking for parents or caregivers of children under six years old with a neurodevelopmental disability to participate in our study that aims to assess the impact of ENVISAGE workshops on parents' well-being and their sense of confidence, family functioning, and empowerment. For more information on the study click
here.
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ENabling VISions And Growing Expectations (ENVISAGE) |
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Recent Publications on Patient Engagement and by FER Alumni
In each newsletter we will highlight relevant research in the field of patient engagement and recent publications by FER graduates. If you have a recent publication to share with the network, please email
Articles on Patient Engagement
Guidance on authorship with and acknowledgement of patient partners in patient-oriented research
This guidance has been co-written by a group of researchers and patient partners of the Chronic Pain Network in an effort to address this gap. It is intended for both researchers and patient partner audiences. This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided.
Richards, D. P., Birnie, K. A., Eubanks, K., Lane, T., Linkiewich, D., Singer, L., ... & Begley, K. N. (2020). Guidance on authorship with and acknowledgement of patient partners in patient-oriented research. Research Involvement and Engagement, 6(1), 1-8.
Publications by FER Alumni and Course Instructors
Knowledge translation strategies to support service providers' implementation of the "F-words in Childhood Disability"
Service providers are adopting the "F-words" in practice as a strengths-based approach to childhood disability. This study aimed to gain insight into service providers' uses of the "F-words", associated barriers, and knowledge translation strategies needed to support implementation.
Use of the International Classification of Functioning, Disability and Health to support goal-setting practices in pediatric rehabilitation: a rapid review of the literature
The International Classification of Functioning, Disability and Health (referred to as the ICF) is the World Health Organization's framework for health. It can be used to identify goals that capture all aspects of a person's life and to inform clinical goal-setting processes. This review aims to report how healthcare providers are using the ICF framework to support goal-setting practices in pediatric rehabilitation services.
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Want to Contribute to the FER Newsletter?
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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 the
form
here
to have it considered for the newsletter and/or Facebook page!
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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
[email protected]
if you wish to join) or sign up to our ListServe to receive our FER Newsletter, course updates, partnership opportunities, grant opportunities, and much more! ListServe Sign Up:
https://lp.constantcontactpages.com/su/8EH7dhE
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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
or on Twitter at
@canchild_ca
&
@kidsbrainhealth
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Canadian Anti-Spam Legislation
You are a member of the Family Engagement in Research electronic newsletter generated by CanChild at McMaster University. If you believe that you should not be a recipient, you may withdraw your consent to receive these messages at any time, in accordance with Canadian Anti-Spam Legislation (CASL) and subject to McMaster University policy, by contacting the sender of this message, or by clicking on the 'SafeUnsubscribe' link at the bottom of this newsletter.
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