The importance of global research with Professor Petrus de Vries

A Q&A with this year’s Mickey Milner International Professorship Keynote Speaker at the annual BRI Symposium

Professor Petrus de Vries, Struengmann Professor of Child & Adolescent Psychiatry at South Africa’s University of Cape Town, will discuss why it’s so critical to build global communities of research to reduce research gaps. Find out what his research career trajectory was that led him to be one of the world’s leading experts in global autism. Learn more

Learn more about the BRI Symposium and register now.

[Pictured above: Manuela Comito, a family leader and long-time member of Holland Bloorview’s Research Family Engagement Committee, speaks at an event in June 2023 to celebrate the completion of Holland Bloorview’s largest research expansion in its history]

This summer, the hospital launched Transformative Care, Inclusive World: Holland Bloorview 2030, our new strategic plan. The plan paints a bold vision for achieving the most meaningful and healthy futures for all children, youth and families.

One of the key pillars is care that is transformed by research and education, which involves expanding the reach of our knowledge and using different types of data to inform precision health solutions. To this end, supporting knowledge mobilization and commercialization is also top of mind for the Research Family Engagement Committee (RFEC). As one member commented: “I’ve often felt we have great BRI discoveries and [intellectual property] but aren’t getting what is learned out to the people who can use it to better their lives.”

Another pillar is agile care, a goal which involves becoming a learning health system. As another RFEC member noted, it would be valuable to know “[h]ow BRI research is directly influencing the way we deliver care at Holland Bloorview”. These pillars underscore the importance of implementing, integrating, and innovating upon research.

The commitment to co-design

The strategic work builds on the hospital’s history and culture of collaboration and co-design with clients. Clients, families, and Family Leaders (lived experience volunteers) helped to develop the strategic plan and now sit on strategy steering committees. Their ongoing involvement will be integral to bringing the plan to life. 

There are a number of ways for BRI staff and trainees to collaborate with Family Leaders; beyond engaging families in the design, conduct, and use of research, Family Leaders helped develop the BRI’s upcoming strategic plan by participating in the retreat and giving feedback on draft documents.

The opportunities for Family Leader involvement in research are anticipated to grow, since research activity is picking up from the pandemic slow-down and with the upcoming launch of the BRI’s own strategic plan. This means there will be more ways for family experience and input to make a difference to the work we do at the BRI.

What family engagement might look like

There are many ways to ‘do’ family engagement in research. Below are several options available to BRI staff and trainees:

• Check out the BRI’s Family Engagement in Research framework and user guide here as a starting point
• Request an education burst about family engagement, tailored for your lab or team
• Explore ideas and options for incorporating family feedback in your work, through a no-obligation consult with Family Engagement Coordinator
• Want feedback on lab priorities or a current/upcoming project? Request a quick consult at a Research Family Engagement Committee meeting to hear from a diverse group of families.
• Work directly with a Family Leader to design a current/upcoming project, or to run a knowledge sharing event or training opportunity
   

For questions or more information on family engagement in research, please contact familypartner@hollandbloorview.ca.

Trainee Spotlight

[Pictured above: Daniela Testani, a PhD student in Dr. Darcy Fehling’s CP Discovery Lab exploring small towns in north Italy]

Each year, over 100 trainees from universities across Canada come to the BRI to collaborate with some of the world’s top scientists in the field of pediatric disability research to advance scientific knowledge – and champion a world of possibilities for kids with disabilities and their families.

BRI Quarterly speaks to one research trainee, Daniela Testani, who is a graduate student working with Dr. Darcy Fehlings and her team in the CP Discovery lab. Daniela is currently in her third year of a PhD program at the University of Toronto’s Rehabilitation Institute within the Temerty Faculty of Medicine.  

How did you get interested in your field of research?

Working as a camp counsellor and camp coordinator for most of my teenage and young adult life, I loved working with children of all abilities. My passion for creating opportunities for children and youth to excel led me to consider aligning this passion with my career.

My introduction to Holland Bloorview came during my third year of undergraduate studies at the University of Toronto. During a course that explored physical activity and its role in preventing mental health, we were assigned a placement within the community. I chose to volunteer at Holland Bloorview in the BIRT/SODR therapeutic recreation program. I instantly fell in love with the community, care, and facilities Holland Bloorview had to offer. After immersing myself into the paediatric literature created by scientists at the Bloorview Research Institute (BRI), it became clear to me that a career in this field would not only be impactful, but meaningful for children and their families.

What drew you to Holland Bloorview’s Bloorview Research Institute?

Following my rewarding volunteer experience in BIRT/SODR, I knew that I needed to be a part of the Holland Bloorview community in some capacity. My firsthand experience allowed me to witness the exceptional care provided to families. Coupled with this first-hand knowledge, the BRI is a leader in creating impactful and creative research. The BRI offers unique opportunities for professional growth and engagement with children and their families in research endeavors. Moreover, I am incredibly grateful for the opportunity to work and learn from Dr. Darcy Fehlings and the CP Discovery Lab, who not only champions paediatric cerebral palsy (CP) research but has played a pivotal role in my personal and professional growth as a student and academic. My training thus far has been greatly enriched by Holland Bloorview’s reputation for academic excellence and collaborating with an interdisciplinary experienced team of advisors, mentors, and colleagues.

What are you and your study team working on right now?

My PhD research is focused on understanding and promoting participation for young children with CP. The first project in my PhD examined changes in participation as children with CP age from pre-school to school age and what pre-school factors can predict their participation frequency as they age.

We analyzed data from the CP-NET clinical database, an Ontario-wide registry that collects crucial psychosocial and participation information on young children with CP. We learned that young children with CP participate less frequently in their community compared to within their home and this restriction in participation persists over time. We also identified child (gross motor function and prosocial behaviour) and family related factors (ethnicity and disability related support) that are predictive of higher community participation. This new knowledge is important in designing and shaping interventions that are accessible for all functional abilities, that promote social behaviour, and are culturally sensitive and promote disability related support in the home.

The third project in my PhD is focused on developing a solution-focused coaching early intervention to empower parents to promote their young child’s community participation. We hope to recruit families of young children with CP that are interested in setting community participation related goals. We will use solution focused coaching, a client-centered, strengths-based approach to work with families to co-create meaningful participation goals.

How can your research unlock a new world of possibilities for children and youth with disabilities as well as developmental differences and their families?

The CP-NET clinical database has collected information on over 400 families of children and youth with cerebral palsy. This information is important in understanding the course of CP and its factors. Findings from my doctoral research will provide significant new understanding of predictors, effectiveness, and feasibility of a solution-focused coaching early intervention to promote participation in young children with CP. I hope to provide clinicians, children, and their families with the right tools to foster opportunities for meaningful participation in early childhood that can be maintained into adolescence and adulthood.

What do you like to do in your spare time?

Outside of my academic and professional commitments, I love to bake, read, and spend time with friends and family. I also love to travel and practice speaking new languages. I have always enjoyed participating in competitive sports and I currently play women’s soccer and beach volleyball.

Upcoming Events

November 16, 2023 | BRI Research Symposium
Learn more at: https://hollandbloorview.ca/research-education/bloorview-research-institute/awards-events/bri-symposium
 

December 5, 2023 | BRI Research Rounds with Dr. Elaine Biddiss

Learn more at www.hollandbloorview.ca/BRIResearchRounds

About BRI Quarterly 

BRI Quarterly is an online publication of the Bloorview Research Institute, housed within  Holland Bloorview Kids Rehabilitation Hospital.

About Bloorview Research Institute

Holland Bloorview's research institute is housed at Holland Bloorview Kids Rehabilitation Hospital, a top 40 Canadian research hospital that is fully affiliated with the University of Toronto and serves over 8,000 families annually. The Bloorview Research Institute (BRI) is dedicated to creating meaningful and healthy future for children and youth with disabilities and developmental differences through ground-breaking research and innovations co-created in partnership with clients and their families. Learn more.

Share Your News

If you've recently presented at a conference, celebrated an award, grant or publication; or have a story idea, please contact Suelan Toye at stoye@hollandbloorview.ca to share your news in the next BRI Quarterly!