FER in Action

Highlighting effective strategies, tools and experiences in family engagement in research #FER for researchers and family partners.

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This resource was created as part of the McMaster University, CanChild, and Kids Brain Health Network Family Engagement in Research Certificate of Completion Program. Copyright © 2021 Maeghan James, Angelica Blais, Clara Pina, Elise Bloch. All Rights Reserved.

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Thanks to @Berna_Elias, @MaudeChampagne3, @CatrineDemers and Delphine Gaudin-Drouelle for the great work on this topic. You can refer to their full infographic here: https://t.co/TbQuDo0rhT

[FER in Action @FER_InAction]

What is #powerimbalance in research, and how do we prevent it? This was the question asked by recent alumni in the @FERCourse, who developed a helpful infographic to help research teams navigate this concern and create a more #equitable environment [1/5]

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Preventing #powerimbalance in #FER must be a top priority throughout each step of the research process. It can be helpful to use self-reflection questions as a preventative tool: https://t.co/RksetDJ4aA [4/5]

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What you'll gain from @FERCourse: Collaborations with other family members, researchers & trainees interested in #FER, more confidence when engaging in research teams + a certificate of completion from @KidsBrainHealth, @CanChild & @McMasterContEd

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Interested in learning more about #familyengagementinresearch? The @FERCourse is now acceptiing applications for their Fall 2021 & Winter 2022 cohorts! Apply here: https://t.co/249gAjRn7x

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What you'll learn from @FERCourse: Importance of #FER + research process, how to find research #partners, how to work together effectively, how to navigate ethics of #FER and address barriers in #research

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Our page is now LIVE! Check out our first 4 threads and some key information we've learned from the @FERcourse this semester. Follow us and #retweet for more! #familyengagementinresearch #partnersinresearch

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✨In #Conclusion✨ There are many benefits to engaging in patient-research partnerships, but the potential #risks of abusing power and/or not considering the already-busy lives of #patient groups should be addressed proactively and through #mutualrespect. [1/5]

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✨#studyhighlight✨ Leese et al (2018) co-designed + co-conducted a #qualitative study w/ #patientpartners to understand the benefits & risks of patient-research partnerships, from the perspective of 22 patient partners in arthritis research https://t.co/in5Ntng0Vh [1/4]

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#T3: The demands of participation on top of existing responsibilities (career, family) described as “spinning too many plates”. Common #struggles included feeling guilty for not doing enough, neglecting family time and responsibilities interfering with health & well-being [4/4]

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#Parent resumes should highlight the various health systems they have navigated with their child, the health providers and services they are well-versed in, special interests/skills + their personal experiences of #caregiving for a child with #specialneeds [4/4]

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What is a #researchpartner #resume?

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#Parents are invaluable stakeholders to research teams; their lived experiences are extensive as they navigate #healthcare alongside community, #disability + family connections. The resume can help identify parents’ strengths & potential role on a research team [3/4]

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The different roles during the research process can be Listener, Co-Thinker, Advisor, Partner and Director. Check out the video below to learn more about the #InvolvementMatrix or visit the website: https://t.co/fUalZJsYYL [5/5]

Video Link: https://t.co/1yf6SC6LZl

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Defining #roles and #expectations for each team member is a critical success factor to any project. When roles are clear, people know what’s expected of them, how to behave and what they need to accomplish [1/5]

[FER in Action @FER_InAction]

Researchers have designed the #InvolvementMatrix to address the challenges with defining roles in #FER in different stages of the study. This tool assists the research team with clearly defining the roles of family partners at the outset. https://t.co/0dIfPrCdPf [4/5]