July, 2021
Happy Summer Everyone!
 
The FER knowledge mobilization team is on brief hiatus for July but will be back at it in August. We look forward to bringing you in August a very unique research rounds on trauma in parenting. There will also be a session on authentically utilizing social media as a tool for networking and recruiting with stakeholder communities.

Have a subject regarding engagement that you’d like to learn more about? Have something you learned in your own experiences that you’d like to share with the FER community? Consider emailing me at martensr@mcmaster.ca and we can see how best to share it!
 
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
FER Course News
New FER Co-instructors
We are happy to welcome two additional FER Co-instructors. Genevieve Currie and Sara Pot are both FER Grads and we are thrilled to have them join the instructor team!
Genevieve Currie, RN, PhD (candidate) is parent advocate and family researcher. She believes that families should be partners in research studies and have much to contribute. Genevieve draws upon her rich experience as a parent and nurse in her program of research on parents’ experience of caring for children with rare diseases and complex neurodevelopmental disorders.
Sara Pot is mom to four daughters, two of whom are medically fragile with complex care concerns. Her work experience includes consulting with educators, organizations, and churches on the inclusive vision of belonging. She is a writer and a presenter, stemming from her professional and personal passion for disability awareness. Sara also serves on the Board of Directors for Empowered Kids Ontario and is an online support parent with the Niagara Children's Centre
Spotlight on FER Grads
Congratulations!
Congratulations to FER Grad (Winter 2021) Nancy Butcher for winning the CHILD-BRIGHT 2021 Knowledge Translation Innovation Incubator Grant Competition for the CommuniKIDS Project!

Nancy Butcher is a child health researcher, INFORM-RARE trial methodologist at the Hospital for Sick Children, and Assistant Professor of Psychiatry at the University of Toronto. Read more here.
Featured FER KT Tool
FER Grads (Winter 2021) Geneveave Barbo, Fiona Caldwell-King, and Helene Estrada developed a webinar to enhance Indigenous family engagement in FASD research. This webinar focuses on FASD and barriers faced by Indigenous families, and recommendations to researchers on how to promote a collaborative partnership with Indigenous families and communities.

FER Grad featured in CMAJ News
"What patients wish health professionals knew about partnering with them"
CMAJ reached out to five patient partners across Canada for their perspectives on compensation and meaningful patient engagement in research. One patient partner was FER Grad (Fall 2018), Francine Buchanan, a patient engagement advisor to multiple research teams in Ontario and a PhD Candidate at the University of Toronto.

Read the full CMAJ article here.

New podcast episode by Rachel Martens
Listen to Rachel Marten's most recent podcast episode from the series: My Complex Parenting Podcast. Parenting a medically complex child rarely comes with a handbook. This podcast explores the world of parenting issues and the science surrounding raising our incredible kids.
Click here to watch the latest podcast episode: Thinking About Mental Health and Challenging Behaviour, featuring Dr, Lucy Lach, Donna Thomson, and the Parents Empowering Neurodiverse Kids Research Team.

F-words for Child Development Webinar with
Dr. Peter Rosenbaum and Donna Thomson
July 13th | 12:00 - 1:00 PM EST
CanChild's F-words for Child Development (Friends, Family, Fun, Function, Fitness and Future) provide a flexible framework to be used by anyone to achieve personal goals and balance work/family life. In this webinar on The F-words for Wellness and Self-Care, Dr. Rosenbaum will join Donna Thomson in a lively chat about how to make this McMaster evidence-based tool part of your life plan for resilience and wellbeing.

For more information and to register click here.
Upcoming Conferences and Webinars

Webinar on Research Impact
September 2nd | 4:00 - 5:00 PM BST
In this webinar, Matter of Focus co-director and University of Edinburgh Honorary Fellow Dr Sarah Morton will explore the challenges of understanding and assessing research impact, especially where research is used in influencing, inspiring, and educating people, and where issues of cause and effect are more complex.
Funding Opportunities
IHDCYH Talks Video Competition
Registration Deadline: September 10th | 4:00 PM EST
Submission Deadline: September 20th | 4:00 PM EST
2017 IHDCYH Talks competition on the
'F-words for Childhood Development' by Andrea Cross
The IHDCYH Talks Video Competition is a unique opportunity to submit a short video (5 minutes or less) that presents a clear evidence-based message to a lay audience that is designed to have a positive impact on the health of children, youth and families. Successful videos will be awarded up to $3,000 CAD and will be posted on CIHR and IHDCYH social media channels and shared through other communications channels. It is important that the content of the videos be engaging, easily understood and accessible to a lay audience.
FER Employment and Engagement Opportunities
Virtual Priority Setting Workshop
August 18th | 1:00 to 4:30 PM EST
August 19th | 1:00 to 3:45 PM EST
A James Lind Alliance Priority Setting Partnership (JLA PSP) is seeking to identify the Top 10 research questions in Paediatric Hospital Care.

For more information click here.
JLS PSP is looking for people who are:
  • Willing to share their experiences with Paediatric Hospital Care and listen to the experiences of others.
  • Front-line clinicians and individuals with lived experience (young people who have been hospitalized in the general paediatric setting and their parents/caregivers).
The Virtual Priority Setting Workshop involves:
  • Small group and large group discussions around the ranking of research questions facilitated by a trained facilitator; you will be sent a package of light pre-reading prior to the workshop.
  • An honorarium for participation and reimbursement for child care (if required).

If you are interested in participating, please fill out the form here.
Training Opportunities

A national training platform for Patient Oriented Research by the Government of Canada
To strengthen the environment for Patient Oriented Research in Canada, the President of the Treasury Board, the Honourable Jean-Yves Duclos, on behalf of the Honourable Patty Hajdu, Minister of Health, announced a new investment of $5.25 million over six years. The funding is being provided under Canada’s Strategy’s for Patient-Oriented Research and will support a new national training platform based at the Université Laval that will focus on enhancing the way the science of POR is taught and conducted in Canada. This will be run in partnership with SPOR Evidence Alliance with Dr. Daniel Goldowitz, CHILD-BRIGHT Scientific Co-Director and Training Program Lead.
The Strategy for Patient-Oriented Research is a true collaboration between the federal government and the provinces and territories, with the shared goal of better listening to the voices of patients, families and caregivers and including them as active participants in the research process. This new investment will allow us to continue to build capacity in the science of patient engagement and patient-oriented research.” 
The Honourable Patty Hajdu, Minister of Health 
Study Recruitment

Youth Engagement in Research
Do you know a young person (18-25) with neurodevelopmental condition(s) interested in improving the research-partner experience? With their insights, we plan to develop training materials with and for youth to support their knowledge, skills, and confidence as research partners.

If you know anyone who may be interested in contributing to this research study by participating in an online focus group or an individual interview, we encourage you to share the poster (right), and contact Samantha Yimeng Dong (dongy58@mcmaster.ca

Visit our website for more information: https://lnkd.in/eik2b9t 

Recent Publications

Publication by FER Grad
“Every little furrow of her brow makes me want to stop”: An Interpretative Phenomenological Analysis of Mothers’ Experiences with Juvenile Idiopathic Arthritis Treatments

In this study, 10 mothers of children with Juvenile Idiopathic Arthritis (JIA), were interviewed about their lived experiences with JIA treatment. Analysis of these interviews revealed four major themes: mothers experienced changing roles and increased caregiver burdens, their interpersonal relationships changed in positive and negative ways (e.g., developing support systems vs. not having time to spend with others), they experienced effects on their emotional well-being, and finally, given these three themes and other uncertainties, mothers experienced internal conflict that at times affected their actions and adherence to treatment. As a result, the authors conclude that it is important to provide parents with support and include their perspectives and expertise when treating children with JIA in order to help optimize outcomes for both the children and their families. 

Authors: Yvonne N. Brandelli, Perri R. Tutelman, Christine T. Chambers, Jennifer A. Parker, Jennifer N. Stinson, Adam M. Huber, Emma S. Cameron & Jennifer P. Wilson
(Arthritis Care & Research)
Publication on Patient Engagement in Research
Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health

In this article, the authors outline their experiences in establishing a pediatric parental advisory group (P-PAG) to advise and partner with them for their research program in knowledge translation in child health. They share insights gained on meaningful engagement and the resources needed to do so. The article also discusses results from surveys taken by P-PAG parent members, including their reasons for participating in the group (ex. wanting to have their voices represented in research), what they thought was going well (ex. strong facilitation of group meetings), and areas where they felt further work was needed (ex. recruiting more members). Through sharing these insights and experiences, the article aims to provide guidance for other research teams seeking to form advisory groups. 

Authors: Lisa Hartling, Sarah A. Elliott, Kelli Buckreus, Julie Leung & Shannon D. Scott
(Research Involvement and Engagement)
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