Student Projects

As part of the requirements for the Family Engagement in Research Certificate of Completion Program, researchers and family members were partnered together and required to create a knowledge translation (KT) tool on family engagement in research. A sample of the KT tools are provided below. 

Websites

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The Dance Ability Movement offers inclusive dance classes for people of all abilities. Through their team of Dance Instructors, Occupational Therapists, Volunteers and Families, dancers participate at their studio to learn a variety of dance styles, and perform on stage with their peers. Through the program, dancers have the opportunity to make friends, be fit, and have fun! The success of the Dance Ability Movement classes relies on engaging parents in the program. Mallory Ryan (the Director of Quality & Improvement) recently participated in the Family Engagement in Research Certificate program through McMaster University, CanChild, and Kids Brain Health Network. In the course, Mallory was partnered with Chelsea Hand, a very proud mother of two amazing little boys. Her oldest son has a rare genetic condition and her youngest has cerebral palsy. As part of their final project in the course, Mallory and Chelsea developed a section on The Dance Ability Movement website featuring Family Engagement in Research (view here) and co-wrote a blog answering FAQ's on family engagement in research (read here). 

Infographics:

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Authors: Amanda Carrington & Vanessa Tomas

Description: This infographic provides 7 ethics tips for families planning to partner in research projects. These tips can help families ask important questions during partnership building and become more confident with engaging in research. 

You can download Carrington and Tomas' infographic here.

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Authors: Amanda Carrington & Vanessa Tomas

Description: This infographic 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. 

You can download Carrington and Tomas' infographic here.

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Authors: Liat Gafni Lachter & Hannah McGee 

Description: This resources provides an overview of research and the importance of family engagement. It includes ideas on how families can think about research and the steps required in the development of research projects. Feel free to download, share and print this double sided tri-fold brochure.

You can download Lachter & McGee's brochure here

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Authors: Tracey Smythe and Shaylene Pind

Description: This tool provides guiding principles for youth and researchers that are working together on projects. It emphasizes “Your Voice Matters,” and examines five key concepts to help bridge the gaps in building connections between youth and researchers.

You can download Symthe and Pind’s guideline here.

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Authors: Lin Li and Carolyne Osterhues

Description: This tool provides a comprehensive conversation guide, as well as tips for communication and relationship-building between researchers and patient/family partners. This infographic and conversation guide provides advice for various stages of the conversation, sample phrases, and tips on self-awareness, trust, respect, mutual understanding, and reciprocity.

You can download Li and Osterhues’ conversation guide and infographic here.

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Authors:  Yvonne Brandelli & Rebecca Nesdale-Tucker

Description: This infographic is specifically tailored to graduate students on some of the ‘do’s’ and ‘don’ts’ of patient engagement in research. This tool focuses on seven main domains: i) learning the ropes & finding partners; ii) building relationships; iii) determining roles; iv) prioritizing questions; v) time management; vi) expenses & compensation; and vii) education.

You can download Brandelli & Nesdale-Tucker's infographic here.


Pozniak tutelmanin

Authors: Kinga Pozniak and Perri Tutelman

Description:This infographic provides information to family members who are interested in getting involved in child health research or who are already involved and might have some more questions about the process. The infographic addresses 5 key questions: i) How can I be involved?; ii) What are the benefits of partnering with researchers?; iii) But what if I don’t have any research training?; iv) What will I be asked to do as a research partner?; and v) Where can I learn more?

You can download Pozniak & Tutelman’s infographic here.


Nguyen et al. infog

Authors: Linda Nguyen, Samantha Bellefeuille, and Lara Eid

Description: This infographic provides tips and strategies on how to develop partnerships and enhance engagement throughout the research process. The infographic is divided in half. On one side of the page the information is directed at researchers who would like to involve family partners in their clinical and/or biomedical research project. The other side is directed to families who are interested in getting involved in either clinical or biomedical research.

You can download Nguyen, Bellefeuille & Eid’s infographic here.


Micsinszki khan

Authors: Samantha Micsinszki and Alifa Khan 

Description: This resource provides information for families and researchers on how to have solution-focused conversations in research partnerships. This tool is intended to provide strength-based, solution-focused prompts to frame conversations and to be used as a guide for families and researchers throughout the research process. 

You can download Micsinszki & Khan’s infographic here.

Kristiandcris

Authors: Crystal Shannon and Kirsti Mardell

Description: This infographic highlights the need for family engagement in child health research. The infographic provides a definition of family engagement in research and then outlines the reasons for researchers and benefits for families.

You can download Shannon & Mardell’s infographic here.

Francineandayesha

Authors: Francine Buchanan and Ayesha Siddiqua 

Description: This infographic provides a quick reference guide to authentic partnership in research, highlighting principles, values, and best practice. The authors developed the acronym ‘IMPACT’ to summarize principles and values including Inclusivity, Mutual respect, Partnership, Accountability, Co-learning, and Transparency. 

You can download Buchanan & Siddiqua’s infographic here.

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Authors: Sharon Gabison and Malvina Skorska 

Description: This infographic provides a visual pathway for researchers to showcase the process of engaging patients, families, caregivers and/or community members (PFCC) as partners throughout each stage of the research process. The authors also developed a complementary checklist and planning guide to be used in collaboration with this infographic to optimize knowledge uptake and understanding of how to establish a research partnership throughout each stage of the research process. 

You can download Gabison & Skorska’s infographic here, checklist here, and planning guide here.

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Authors: Heather Shearer and Kristina McGuire

Description: Infographic 1 provides a checklist for patient partners in research and highlights key questions parents should ask at each stage of the research project. Infographic 2 explores patient partners’ roles in each stage of the research process.

You can download Shearer & McGuire Infographic 1 here and Infographic 2 here.


Videos:

Authors: Meaghan Reitzel and Jennifer Crowson

Description: This podcast showcases a conversation between a researcher and caregiver on family engagement in research. Together, they discuss ways that family members can become more involved in a research project all the way from the planning, implementing and sharing of research results.

​Authors: Ara Healey and Maryann Post

Description: We all play important roles at different stages of a research project and are equally important to the success of the team. This video looks at re-defining roles in research and its impact on both the team and the research project.

Authors: Mindy Silva and Jen Appelton

Description: This video explores the true meaning of family engagement in research, and what it looks like in practice from the initial conception to the final results/knowledge dissemination. Useful resources to support family engagement in research are highlighted throughout the video.  

Authors: Danijela Grahovac, Vivian Lee, and Sara Izadi-Najafabadi

Description: This video - Day in the Life of Parent Researcher: An Interview, is an interview with Danijela Grahovac, a parent researcher with CanChild and mother to a teenager with Cerebral Palsy. This interview provides real-life examples and information about Danijela’s experiences as a parent researcher and why and how other parents can consider becoming engaged in child health research.

Authors: Karen van Meeteren and Kaitlyn McLachlan

Description: This is a brief 3-minute informational video introducing what family engagement in research is and why it is important. This video is easy to share over social media to help spread the word about the importance of family engagement.