Student Projects

As part of the requirements for the Family Engagement in Research (FER) course, researchers and family members are partnered together to create a knowledge translation (KT) tool. The purpose of the KT tools developed by students is to disseminate knowledge and information on patient and family engagement in childhood neurodevelopmental research. Examples of KT tools include infographics, webinars, podcasts, or any other means of sharing information. We encourage you to download and use these KT tools to support your engagement in research!

Websites

The dance ability movement logo square (1)

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). 

 

Tools & Guidelines

Fer engagement tool

Authors: Amanda Binns, Lorrisa Dilay, and Heba Farag

Description: These tools can be used to strengthen relationships within teams and enhance engagement through promoting self-reflection across members of a research team. There are three components to this tool: (1) a personal goal setting document, (2) a personal check-in document, and (3) a facilitation guide designed to promote discussions across group members about each member’s goals and reflections.

Please click the following links to download the documents:​

 

Fer conversation guide

Authors: Jennifer Zwicker, Lauren Trafford, Myrah Malik, Lily Collinson

The "Family Engagement in Research: A Conversation Guide" is a collaborative tool meant for use by both researchers and family partners. This guide will walk researchers and partnered families through the necessary steps to designing and carrying out a research project, encouraging shared discussions around project hopes, goals, roles, and expectations. Included in the guide are: a definition of family engagement in research; instructions for using the guide; discussion questions at each stage of a research project; examples to provide suggestions for conducting high-quality, family-engaged research; and spaces to record and reflect on discussions.

Download the Conversation Guide

Download the Conversation Guide (fillable version)


Guidelines for researchers

Authors: Elizabeth (Liz) Boyer, Pamela Libralesso, and Sara Pot

This ‘Guidelines for Researchers’ KT project was created to provide researchers with a brief introduction to family engagement in research. It’s a simple “How To” guide, ripe with resources, for researchers to start their first project with family/patient partners.

Download the Guidelines


Fer glossary

Authors: Ariel Taylor, Marion Knutson, Jeffrey McCrossin

This glossary is intended to support communication between researchers and family members that are partnering in research. It's normal for some family members to feel a bit lost in the jargon and slang researchers use regularly in their line of work. This document is not meant to be exhaustive or authoritative and some terms may require further explanation from a member of the research team. This glossary is a starting point for partners to develop a shared language.

Download the FER Glossary

 

Social Media

Fer in action

Authors: Clara Pina, Angelica Blais, Maeghan James, and Elise Bloch

The purpose of the @FER_InAction Twitter account is to highlight effective strategies, tools and experiences in family engagement in research targeted at both researchers and families. This page is designed intentionally as a Knowledge Translation tool and was created by Angelica Blais, Maeghan James, Elise Bloch and Clara Pina. Please feel free to follow the page and share it with your network.


Yer instagram

Authors: Amanda Doherty Kirby, Jim Reeder, and Nicole Proudfoot

The Youth Engagement in Research Instagram account was created by Amanda Doherty-Kirby, James Reeder, and Nicole Proudfoot to increase awareness about how youth can engage in health-related research beyond being a participant. The @youth_in_research page shares knowledge about how youth engagement works, spotlights youth (both those with lived experience and researchers), and shares opportunities for youth to partner in research.

If you have an opportunity that you would like to share with young people, please e-mail feryer2020@gmail.com.

Learn more about Instagram and Youth Engagement in Research

 

Blogs

Bringing more diverse family voices feature

Authors: Megan Easton, Ralph Pot, Julie Gross, Alex Luther

This blog explores Family Engagement in Research (FER) and the issue of a lack of diversity among family partners in research. The authors report how diversity in FER is important as it ensures that a wide range of perspectives are represented and integrated in research. Unfortunately, there are barriers to diversity in FER which impede inclusivity and limit research opportunities for under-represented populations. The blog offers an overview of structural, attitudinal/cultural, and personal barriers experienced by researchers, families, and patients. In addition, the authors highlight strategies and next steps to increase diversity in FER. This blog is available on the Kids Brain Health Network website. 

Read the blog


The importance of family engagement in research

Authors: Genevieve Currie, Susan Heald, Zina Zaslawski

This blog post reflects on the importance of family engagement in research, as well as the challenges faced by both researchers and family members. In addition, the blog includes a list of important factors (e.g., values, expectations, and compensation) that researchers and family partners should discuss in order to help make the partnership successful. The need to evaluate the partnership is also highlighted as an essential component to improve the process of research engagement for both family partners and researchers.

Read the blog

 

Comics

From care to research

Authors: Sandrine Gagné-Trudel, Alain Chatelin, and Christelle Pons

This comic provides an example of the possibility of partnership in care and in research. It shows how research can be useful for decision-making in care and how the involvement of families is important in the development of knowledge. It emphasizes the value of research and the empowerment of families in this partnership.

Download the English version

Cette bande dessinée offre un exemple de partenariat en soins et en recherche. Elle montre comment la recherche peut être utile pour la prise de décision en contexte de soins, en plus de montrer comment l'engagement des familles est important pour le développement des connaissances. Elle met l'accent sur la valeur de la recherche et le pouvoir d’agir des familles dans ce partenariat.

Download the French version

 

Infographics

Starting the conversation

Authors: Steve Gentles, Hikmet Mawi, Samantha Schulz, Rachel Hornbeck

The purpose of this infographic primer is to introduce family partners to the topic of compensation for engagement in research activities. It specifically targets family partners to increase their level of comfort for participating in what can otherwise seem like an awkward conversation.

Download Starting the Conversation: Compensation in Family Partnership


Acceptance and commitment training

Author: Lee Steel and Bri Redquest

We offer Acceptance and Commitment Therapy (ACT) workshops to caregivers of people with disabilities to help improve their psychological wellbeing. A unique aspect of these workshops is that they are delivered by a clinician and a caregiver. Here is an example of a flyer that we created to help recruit caregivers to co-facilitate these ACT workshops. 

Download the ACT Flyer


Right to participate

Authors: Jaime Winkler, Chantelle Bouck, Erin Klein

The ethical research involving children falls under the obligation of investigators to serve and protect vulnerable individuals.  Involving children in discussions and processes that directly impact their lives is important throughout the entire process. Equally important is that a child knows that they have the right to say that they no longer feel comfortable participating or answering the questions being asked.

Download the Right to Participate - Children in Research


Trauma informed practice in family engaged research

Authors: Christine Johns and Shikha Saxena

This infographic has been prepared for health researchers involved in family engaged research. It presents a rationale for utilizing trauma-informed practice in order to create a safer, more inclusive space for families to participate in health research and presents principles and strategies to assist researchers in this process.

Download the Trauma-Informed Practice in Family-Engaged Research


Experiences as parent partners

Authors: Sasha Dyck, Meghan Ford, and Samadhi Mora Severino

This infographic targets parents and explores parent partners' experiences in research. The infographic provides advice to other parents to overcome barriers and engage in research as collaborators. This infographic is available in English and in French.

Download the English version

Cette infographie est pour les parents et explore leur expériences comme partenaires en recherche. L' infographie peut être utilisée pour conseiller aux autres parents comment surmonter les obstacles et s'engager en recherche comme collaborateurs. Cette infographie est disponible en Français et en Anglais. 

Download the French version


Guiding principles for success

Authors: Kate Einarson and  Lisa Raffoul

This high-level overview of guiding principles for family engagement in research (FER) was developed through conversations with a diverse group of researchers, parents, and other contributors to discuss successful research partnerships. From those conversations emerged overarching themes of Equity, Flexibility, Shared Expectations, Ethics, Empathy, and Communication, all arising from a foundation of mutual Respect. The principles, practices, and external resources in this infographic are applicable to a wide range of partnerships and projects.

Download the Guiding Principles


Without you research is out of balance

Authors: Paula Silva de Carvalho Chagas (Paula S. de C. Chagas) and Andrea Brett

Engaging families as partners throughout the research process is still in the beginning stages in Brazil. This infographic was created to highlight the importance of families choosing to engage in research and at the same time encouraging researchers to connect with and engage families. The tool was created to be culturally sensitive to the Portuguese community in Brazil and Brazilian communities in Canada as well.

Download the English Version

Envolver as famílias como parceiras em todo o processo de pesquisa ainda está nos estágios iniciais no Brasil. Este infográfico foi criado para destacar a importância das famílias escolherem se engajar na pesquisa e, ao mesmo tempo, incentivar os pesquisadores a se conectar e envolver as famílias. A ferramenta foi criada para ser culturalmente sensível à comunidade portuguesa no Brasil e também às comunidades brasileiras no Canadá.

Download the Brazilian Portuguese Version


Fer decision tree

Authors: Olaf Verschuren and Carmen Kroon

This tool is specifically tailored to parents and can be used in waiting rooms (or other areas) in rehabilitation centers or hospitals. The goal of the decision tree is to activate and/or encourage parents to sign up as a partner in research. We hope that this active approach is more effective than a more passive form of recruitment like an information letter.

Download the Decision Tree


Language in family engaged research thumbnail

Authors: Chantel Ritter, Shannon Reaume, Karen Haas

This tool is a guide for researchers when communicating with family partners. We include six guiding principles to facilitate communication and enhance the relationship between researchers and family partners.

Download the Language in Family Engaged Research


Initial meeting guide

Authors: Karys Peterson-Katz, Shona Casola, Katherine (Kate) Guzzo-Foliaro, and Deepika Sharma

The Family Engagement in Research Initial Meeting Guide provides questions to support both researchers and experience experts (families) as they begin to collaborate, co-develop relationships with each other and clarify roles before, during, and after meeting. The guide provides an overview for the first meeting by helping facilitate conversations as researchers and experience experts embark on work together. This Guide seeks to remove barriers surrounding academic language and create a bridge between roles, relationships, and responsibilities. We believe that when all sectors of health care and family care are collaborating, this will create a holistic picture of wellness and ultimately support better outcomes for children, youth, and their families.

Download the Family Partner Guide

Download the Research Partner Guide


Demystifying academic culture

Authors: Mackenzie Salt, Shannon Pascoe, and Rita Abdel-Baki

This Infographic has been designed to bring transparency to academic processes and pressures for potential research partners. The intent of the infographic is to illustrate these processes and pressures to support the inclusivity of patient and family partners in research.

You can download the infographic here.


Roles of experience experts

Authors: Jessica Lewis, Karen Kelm, Esther Lee, and Adriel (AJ) Orena

"Roles of Experience Experts" are infographic tools adapted from the Involvement Matrix developed by Karen van Meeteren and team. The Involvement Matrix is a researcher-facing tool intended to support researchers partnering with experience experts (EE). These complementary infographics are targeted towards the EE to read on their own time. These tools provide quick, clear definitions of the potential roles available within a project in order to give EEs a better idea of the opportunities for research involvement.

You can download the infographic here.


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Authors: Amanda Carrington & Vanessa Tomas

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.


Screen shot 2020 04 24 at 8.27.30 pm

Authors: Amanda Carrington & Vanessa Tomas

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.


Screen shot 2020 04 24 at 8.30.47 pm

Authors: Liat Gafni Lachter & Hannah McGee 

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

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.


Screen shot 2020 04 04 at 12.37.48 pm

Authors: Lin Li and Carolyne Osterhues

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

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

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

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 

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

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 

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.


Ferinfosharonmalvina

Authors: Sharon Gabison and Malvina Skorska 

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

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.



Podcasts

Fer podcast

Authors: Fakhri Shafai, Nicholas Denomey, Laurel Ryan, and Jessica Baraskewich

This podcast explores the issue of engaging populations that are statistically less likely to be engaged in research. Specifically, we focus on fathers, Indigenous Canadians, newcomers to Canada, and lower-income earners. We discuss barriers to participation in these groups and strategies researchers have used to facilitate higher representation from these populations in their research. 

Podcast Part 1: Barriers to Participation in Research in Historically Underrepresented Groups 

Podcast Part 2: Facilitators and Final Thoughts

Podcast Transcript

 

Videos:

Authors: Kristy Wolfe, Chelsea Durber, Lawrence Ng, Joanne Tay

Wonder what Family Engagement Research is all about? This video features our stories, as researchers and caregivers, of how and why we became involved in research. This I Was There Too conversation is a discussion about why it is important for families to have a seat at the research table and includes resources to help families can get involved in research.

 

Authors: Geneveave Barbo, Fiona Caldwell-King, and Helene Estrada

Our team developed a webinar that aims to enhance Indigenous family engagement in Fetal Alcohol Spectrum Disorder research. This webinar consists of background on FASD, barriers faced by Indigenous families, and recommendations to researchers on how to promote a collaborative partnership with Indigenous families and communities.

 

Authors: Meaghan Reitzel and Jennifer Crowson

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

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

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.  

Download the Communication Toolbox for Optimizing Family Engagement in Research

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

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

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.