Happy September Everyone!
Here in Calgary is starting to look like a fall coffee commercial. You just want to throw on a sweater and sip a latte. Definitely a time of transition for so many reasons!
The FER team is prepping for the fall cohort of the Family Engagement in Research Course and a wealth of new students. We welcome two former grads, Sara Pot and Genevieve Currie, as instructors for the course. It’s all so very exciting!
PROMOTE YOUR RESEARCH!
With time passing so quickly, the FER Knowledge Mobilization team is looking for new guest presenters for the monthly Luke’s Legacy Family Engagement in Research Course. It’s an opportunity to present your research in plain language format for parents and clinicians. We have openings for 2022 and if you’d like to share your work, please get in contact with me at martensr@mcmaster.ca
Cheers,
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
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Luke's Legacy Family Research Rounds
September 29th, 2021 | 7:00 to 8:00 PM EST
SKIP (Solutions for Kids in Pain)
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Watch last month's Family Research Rounds on:
Post-traumatic stress in parents of children with neurodevelopmental disorders
In this session, Donna Thomson and Patrick McGrath talked about the Life Beyond Trauma Program, a research project dedicated to developing an online intervention for parents who have experienced trauma in the care of their neurodiverse children.
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Welcome Fall 2021 FER Students! |
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We are excited to welcome students in the 7th cohort of the Family Engagement in Research course! We are looking forward to the start of the course next week!
Avenue to Learn is now open to our Fall 2021 cohort. We encourage you to check it out and write an introduction about yourself in the discussion section.
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Congratulations to FER Grad (Fall 2018) Francine Buchanan on the successful completion of her PhD. Francine Buchanan's thesis was on Activity-Theory Informed Qualitative Study of Shared-Decision Making for Children with Medical Complexity.
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FER Grads (Winter 2020) Amanda Carrington and Vanessa Tomas created an infographic that provides a roadmap example for families wishing to partner in research projects. It provides ideas for reflections, professional relationship building, and ways to become more engaged in research settings. Click the infographic below to download.
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Upcoming Conferences and Webinars
Call for Abstracts
Deadline to submit: December 10th | 11:59 pm PT
The BC SUPPORT Unit invites patients, their families and caregivers, researchers, health care providers, and health system decision makers to share their patient-oriented research (POR) and experiences at the fifth annual BC SUPPORT Unit conference! The conference will be held virtually to increase accessibility.
The event will be held in March, and the theme is Listening, Learning, Collaborating & Changing. The call for abstracts is now open!
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Alberta SPOR Support Unit Webinar
September 16th | 11:00 - 1:00 pm EST
Attend the third session in Alberta SPOR Unit's "Shaping Patient-Oriented Research Environments Through Equity, Diversity and Inclusion" webinar series.
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This session’s theme is “EDI, Two-Eyed Seeing, and Strengths-based Indigenous POR” where AbSPORU will focus on the following learning objectives:
- Describe what health equity means in Indigenous contexts.
- Describe EDI and POR within Indigenous contexts.
- Explain how Two-Eyed Seeing and strengths-based research approaches advance EDI in Indigenous POR.
- Describe how EDI in Indigenous POR enhances the research environment, research quality, community impacts, health equity and patient outcomes.
- Identify and describe research roles and culturally-appropriate strategies and mechanisms for creating inclusive research teams in Indigenous POR.
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CHILD-BRIGHT Network POR Discussions
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CHILD-BRIGHT launched its inaugural Patient-Oriented research Discussions (PODs) series to enhance the exchange of ideas between all stakeholders within the CHILD-BRIGHT network. Four sessions will be hosted to explore content related to patient engagement in research. Each session will be hosted by a presenter who will pick the topic and resource(s) for discussion, and will consist of a 60-minute exploration of the resource/topic as well as an optional 30-minute networking opportunity. FER Grad (Winter 2019), Linda Nguyen, will present topic 1 on her POR experience as a graduate student. Click here for more information and click the topics below to register.
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KBHN Virtual Conference - Discount for FER Grads!
Conference date: November 8th - 9th
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The 2021 Kids Brain Health Virtual Conference runs from November 8-9 (#KBHNConf2021). This two-day online event will feature a wide array of talented researchers, insightful parents, caregivers and people with lived experience who will speak to the critical role partnerships play in realizing change and inspiring innovation.
Information on DISCOUNT for FER Grads:
All FER Grads can register at the rate of $25 (even after the early bird period-September 10th). Click on the family option when registering to receive the discount.
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Awards and Funding Opportunities
CHILD-BRIGHT Patient Engagement in Leadership Award
Nomination Deadline: October 13th
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Do you know a patient-partner with considerable experience participating in patient-oriented research activities, and with a track record of leadership in patient engagement? Or would you like to put your own name forward?
CHILD-BRIGHT awards nominations have opened!
CHILD-BRIGHT is proud to establish the Frank Gavin Patient Engagement Leadership Award. This award honours Frank Gavin, CHILD-BRIGHT’s inaugural Director of Citizen Engagement, for his important and vital contributions to our Network’s growth and development as a SPOR entity.
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FER Employment and Engagement Opportunities |
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Patient Partners Needed for Digital Health Research Initiative Steering Committee |
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The BC Children's Hospital is currently looking for 1-2 volunteer patient partners to join the Digital Health Research Initiative Steering Committee. Click here for more ways to get involved with the BC Children's Hospital.
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Get involved with Ontario SPOR Support Unit to identify training opportunities in POR
October 1st | 10:00 - 3:00pm EDT
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Are you a patient partner, trainee, or independent researcher involved in patient-oriented research in Ontario? Consider participating in the Ontario Strategy for Patient-Oriented Research SUPPORT Unit (OSSU) consultation session to identify training priorities in patient-oriented research. This event is co-led by OSSU’s Training and Capacity Development Initiative and OSSU’s Patient Partners Working Group.
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Study Recruitment
Parents needed to test new online platform to support preschoolers' movement and social-emotional skills
Recruitment on behalf of FER Grad (Winter 2021) Maeghan James
FER Grad Maeghan James is examining the usability and feasibility of an online platform built to help parents teach movement and social-emotional skills to their preschoolers at home.
Interested in participating? Visit:
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Parents needed to share their experiences with healthcare services
Recruitment on behalf of Kinga Pozniak (FER Grad) and Rachel Martens (Research Engagement Strategist)
For more information click here and visit:
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Recent Publications
Publication by FER Research Engagement Strategist and Grads
Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice
This article presents a critical reflection on the family construct conceptualization with careful consideration of the implications for childhood disability rehabilitation practice and research. Interrogating the family construct asks questions such as: who is included as a part of the family? Which family structures are prioritized and valued? What is the potential harm when some families are ignored or underrepresented in childhood disability practice and research? What implications could a modern rethinking of the concept of family have on the future of childhood rehabilitation practice and research? This perspective article raises these critical questions from the authors' perspectives as parents of children with disabilities, child focused rehabilitation professionals, and researchers that focus on service delivery in children's rehabilitation and family engagement in research.
Authors: Michelle Phoenix, Meaghan Reitzel, Rachel Martens, and Jeanine Lebsack
(Frontiers in Rehabilitation Science)
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Publication on Patient Engagement in Research
Commentary: Community Knowledge for Equity in Healthcare
In this commentary, the authors highlight three key suggestions to deepen and broaden our approach to community engagement. The first suggestion, is to shift language from patient engagement to community engagement. Second, the authors propose a shift from engaging various communities with labels such as "underserved" or "structurally marginalized" to engaging cultural or geographic communities at specific times. The third suggestion is to deferring to community knowledge.
Authors: James Shaw, Philina Sky and Shivani Chandra
(Health Policy)
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Follow us @FERCourse
Contact us at fer@mcmaster.ca
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