May 2024

Happy May everyone!

Yesterday I attended a family-friendly, University of Calgary event celebrating the work of One Child, Every Child. It was such a wonderful opportunity to not only speak to some incredible research, but to celebrate child health with kids and families.

As you can see in the photo below, we all had an opportunity to decorate our name tags. Frankly, I feel like packing stickers for my name tag for every conference now just to be sparkly, but I digress.

The experience reminded me how it's important to take time to have fun. That's important on research teams too!

What's the importance of having fun?

1) It's energizing and promotes creativity.

2) It levels power dynamics.

3) It boosts productivity.

Having fun doesn't need to be complicated, but it does help team members feel seen. This contributes to the wellbeing of your team.

Rae Martens

Knowledge Broker

Research Engagement Strategist

Looking for Lived Experience Opportunities in this Newsletter?

Look for the "🌟" to find highlighted opportunities.

FER Community Opportunities

Share Your Updates With The FER Community 🌟

We would love to hear from you and feature your updates in this newsletter! Please click on the button below and share what's new in your world!

The FER Community Network Had Joined Discord! 🌟

Consider staying connected with the FER student and graduate community on the app Discord. (Also available via computer.)

A consistent place to gather more information on recruiting, new resources, and to ask questions regarding best practices in family engagement.

🌟Have an Engagement Challenge You're Working Through?

Book a consult with Rae Martens our Knowledge Broker

Where possible, Rae provides support for partnership matchmaking, research collaborations, and knowledge mobilization planning. For support consider booking a consult by emailing Rae at martensr@mcmaster.ca

The Parking Lot: An Informal, Supportive Space for Family Partners 🌟

Next Event: Thursday, May 16, 2024 1pm EST or 7pm EST

Join us for an exciting online event where we'll dive into all things related to partnering and advising in healthcare and health research. Everyone needs a space to sort through common challenges and just support our overall mental health in what can sometimes be very challenging work.

The Parking Lot, is an informal space for support and collaboration with the overall goal of taking time for ourselves just to breathe and chat. It's intentional self-care and a way to build your support community.

FER Ideas Incubator 🌟

Next Event: May 13, 7pm EST

Join us for the FER Ideas Incubator, a monthly online event where creative minds come together to share and develop innovative ideas. Whether you're a person with lived experience, a researcher or trainee many of us have ideas that would improve or support the work of engagement in healthcare or health research. What can sometimes be missing is the opportunity to sit down with like-minded individuals and innovate together. 

The ideas incubator is a dedicated space to connect with others and utilize our collective skills to drive new ideas and innovations forward. 

Join us the second Monday of every month as we seek out new ideas and work at how we can share and showcase generated innovations.

Did you know that the Family Engagement Program has a blog on engagement? You can read and subscribe here.

The team is currently seeking researchers and partners who may wish to share their experiences, or best practices.

This is an opportunity for us to learn from you!

Submissions can be sent to Rae at martensr@mcmaster.ca

(1000 words maximum. Themes can vary.) 🌟

Will you be attending EACD 2024 Annual Meeting in Bruges, Belgium?

Some members of the FER team will be attending as well as hosting a workshop during the conference. They would love to see you at the workshop, but also wanted to stay in touch while you're all there and perhaps connect in person! Interested in connecting? Click the button below and add your information to the form to stay in touch.

Please Consider Sharing With Your Networks

The Family Engagement Program is now accepting applications from researchers and people with lived experience and their families interested in partnering in child health research!

Dates: Fall 2024, Winter 2025

Learn more: ow.ly/a6OH50RyUyQ

Apply by June 19: ow.ly/sS0250RyUyT

FER in the Community

FER Course and Leadership Academy graduate Jim Reeder, recently wrote an excellent paper entitled, "Are We at Risk of Commodifying Lived Experience in Childhood Disability Research?" that is very much worth a read. The FER Program team is honoured to have been referenced in the publication.

BC Pomeroy, was a part of a team that recently put out a document called "Beyond the Binary in BC". A guide that provides pathways toward equitable research with people who experience gender-based health inequities.

Congratulations to FER Program team member Donna Thomson and team. (@Thomsod on X) Their webinar series "Caregiving Essentials Monthly Webinar Program" recently won an award that recognizes excellence in university continuing education programs in Canada and to nurture the concept of the scholarship of practice inherent in the program development process. Congratulations!

Congratulations to all 2024 Graduate Plenary Award Winners at McMaster University

Congratulations to FER community members Alice Soper and Meaghan Reitzel on their recent award!

Now Recruiting

Apply to Be a Member of the CIHR's IHDCYH's Youth Advisory Council 🌟

The Institute of Human Development, Child and Youth Health (IHDCYH)'s Youth Advisory Council is a group of diverse young Canadians who are passionate about health and health research. The council brings the youth voice directly into conversations about priority development, policies and issues that impact Canadian communities from coast to coast to coast.

Youth council members meet online to share thoughts and ideas with each other and IHDCYH, and discuss health related topics that are important to them and their communities.

IHDCYH is looking for youth in Canada between the ages of 12-25 to join our youth advisory council! Applications will be accepted until May 21, 2024.

Have a milestone that you're celebrating? Let us know! Email Rae Martens at martensr@mcmaster.ca

Now Accepting Abstracts 🌟

Some of these may be a great opportunity to share your finished knowledge tools from the course.

Speak to Rae Martens (martensr@mcmaster.ca) if you'd like some support.

Center on Knowledge Translation for Disability and Rehabilitation Research

KTDRR’s 2024 Virtual KT Conference – Call for Presentations 

The Center on Knowledge Translation for Disability & Rehabilitation Research is looking for proposals for their upcoming 2024 Virtual Knowledge Translation Conference. This year’s theme is, “Disability Inclusion, Intersectionality, and Knowledge Translation.” 

Children's Healthcare Canada 2024 Conference 🌟

Children’s Healthcare Canada and co-hosts, the Janeway Children’s Hospital and the Janeway Children's Hospital Foundation, invite you to join us in picturesque Newfoundland and Labrador from October 20-22, at the St. John’s Convention Centre for our 2024 Annual Conference , Right-Sizing Health Systems for Kids: Navigating to Brighter Futures. For those unable to attend in person, a real-time virtual option will also be available.

International Meeting for Childhood Disabilities: EACD and IAACD

June 24-28, 2025

Important dates at a glance:

Ø  Call for Formats with individual speakers: Orals / Posters            

Monday, 08.07.2024

Ø  Closing Date for submission for Orals / Posters                            

Sunday, 12.10.2024

Click here to read submission guidelines.

Leadership Reads 🌟

Have a book that you recommend? Consider sharing with us for the newsletter.

The Power of Teamwork - Dr. Brian Goldman

In the high-pressure and complex setting of healthcare, a new approach to teamwork is leading to healthier patients, happier staff and more efficient operations. Healthcare's embrace of a new teamwork model has been noticed by people outside the medical world, so doctors are going outside the walls of the hospital to teach manufacturers, business owners, franchisees, customer service representatives and even those in sports and entertainment to do better by shifting the culture from “me" to “we."

Have questions about whether the FER Leadership Academy is the right next step for you? Consider emailing Rae with your questions. For more information, check out this link.

Learning Opportunities and Resources

Connecting Communities: Addressing Opportunities to Improve Experiences, Services and Care Within and For the Autism Community 🌟

June 13-14, 2024 Livestream Available

Registration is live for Autism Alberta's Alliance Event - Connecting Communities! For more information and to register, click the button below.

Navigating Conflict in Patient Engagement

Wednesday, May 15

This session is intended for intermediate learners.

By the end of this session, attendees should be able to:

• Discuss the importance of using a trauma-informed approach in patient and public engagement
• Develop a strategy to work with patient and public partners in addressing conflict as it arises; and
• Employ strengths-based approaches to plan for conflict in their own work.

How do you know if you are making a difference? A practical approach to understanding and tracking your impact 🌟

May 14, 2024 07:30 AM EST

If you’re struggling to bring together and evidence the story of your work, and report on it well, join Sarah Morton for this webinar that will introduce our practical and meaningful approach.

What you will gain from this webinar

- An orientation to the challenges of understanding and capturing impact.

- Information about methods and approaches that are tried and tested.

- An understanding of how to develop approaches that are suited to your work and its challenges.

- Practical tools and ideas you can start using now.

- A chance to ask our expert team about the particular challenges you face.

Patient Engagement 101 Workshop

June 19, 2024

The patient engagement (also referred to by other terms, including patient partnership) workshop is designed to support trainees with the necessary skills and knowledge to feel more comfortable about the concepts and practice of patient engagement in research. The goal of the workshop is to foster best practices in patient engagement through a hands-on exercise and interactive learning that can be applied to research projects.

More specifically, the objectives of this workshop are to:

• Enhance trainee knowledge and understanding of patient engagement in research, where patients are partners on the research team, not volunteer participants in a study.
• Increase trainee capacity to actively engage patient partners throughout a research project.
• Develop trainee understandings of patient engagement best practices.

Successful applicants will be given the opportunity to attend the Patient Engagement in Research 101 Workshop in Halifax, NS.

Resources On Engagement

Putting the Patient First in Patient and Community Engagement: The SPOR Evidence Alliance Initiative 🌟

Join Dr. Andrea Tricco as they share about the great work going on through the SPOR Evidence Alliance.

Relationship Building in Family Engagement: Building Trust as a Form of Science Communication

In this webinar we will dive into considering why building relationships in family engagement through a lens of science communication matters. We'll explore strategies for fostering trust and collaboration within families through this unique angle. Join Rae Martens as she reflects on her time having challenging conversations in an era of misinformation and what she's learned in the process about engagement because of it.

Featured FER KT Tool

Patient and Family Engagement in Clinical Trials 🌟

Publications on Family Engagement

Employing diffusion of innovation theory for ‘not missing the mass’ in community-engaged research

Engaging with minority communities, such as immigrants and ethnic minorities, often involves adopting top-down approaches, wherein researchers and policymakers provide solutions based on their perspective. However, these approaches may not adequately address the needs and preferences of the community members, who have valuable insights and experiences to share. Therefore, community-engaged approaches, which involve collaborative partnerships between community members and researchers to identify issues, co-create solutions, and recommend policy changes, are becoming more recognized for their effectiveness and relevance. Yet, prevailing community engagement efforts often focus on easily reachable and already engaged segments of the community, sometimes overlooking the broader population.

Tanvir C Turin, Mashrur Kazi, Nahid Rumana, Mohammad Ali Ashraf Lasker, and Nashit Chowdhury

Community Ecosystem Mapping: A Foundational Step for Effective Community Engagement in Research and Knowledge Mobilization 🌟

Understanding the community ecosystem allows us to identify the pivotal factors, key actors, and pulse of the community that we are engaging with. This enables us to build mutual trust and goals for research and knowledge mobilization. Subsequently, an empowered, continual, and collaborative partnership becomes possible, resulting in sustained and desirable outcomes. Tanvir C. Turin,Mashrur Kazi, Nahid Rumana, Mohammad A. A. Lasker, and Nashit Chowdhury

New Publications FER Community Members

Illuminating their reality: the use of metaphor by parents of children with disabilities to express their experiences of health care

Parents’ metaphors expressed experiences of uncertainty, powerlessness, and attempts to exert agency in healthcare interactions. The metaphorical groupings provide new insights into how and why lack of family-centeredness in service delivery is bewildering, distressing, and disempowering to parents. Implications for service providers include paying attention to what metaphor use reveals about parents’ experiences, and discussing parents’ metaphors with them to create joint understanding, providing a fertile ground for collaboration. New publication from Kinga Pozniak, Elizabeth Chambers et al.

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