Former CHILD-BRIGHT research assistant headed to World Para Swimming Championships in Madeira

Jessica Tinney at the Canadian Swimming Trials in April 2022. Photo credit: Scott Grant

We’re proud to share that former CHILD-BRIGHT Research Assistant Jessica Tinney will be representing Canada at the World Para Swimming Championships in Madeira in June!

Jessica qualified for the World Championships following the 2022 Canadian Swimming Trials from April 5 to 10 in Victoria, British Columbia, where she received a bronze medal in the 200m Freestyle and broke a Canadian record in the 200m Individual Medley.

A soon-to-be graduate of the kinesiology program at Queen’s University, Jessica joined our Knowledge Translation (KT) Program team in the summer of 2021 to put together our new KT Library, which is an evolving repository for the wide range of KT products created by our network since its inception in 2016.  The library houses many scientific and plain language publications, books and book chapters, reports, webinars, infographics and much more.

Consult our KT Library here

The library was created to further the KT Program’s goal of facilitating exchange and promoting the uptake and dissemination of existing and new knowledge relevant to children with brain-based developmental disabilities and their families—a mission that was a direct inspiration for Jessica when applying to work with CHILD-BRIGHT.

“The [job] description was about disseminating articles to make it so people who the research is actually meant for can read them. I thought that was interesting, based on my background and having a disability and not being able to read or understand the information before I went to school. I thought that'd be really cool,” she said. As part of the KT Library team, Jessica wrote plain language versions of some of the scientific journal articles published by network members and added the various resources and outputs to the library on the CHILD-BRIGHT website.

As a person with cerebral palsy, Jessica’s experiences with medical care have also driven home for her the importance of communicating knowledge in an accessible way to patients. She described going to doctor’s appointments and grappling with complicated explanations provided to her: “I never understood how any of it like related to me or what I needed to get from what they were saying, so I think to have like a resource, something like what we're doing here, would be really helpful to people.”

The time she spent in and out of physiotherapist offices as a youth, in particular, is also how she first found her way to swimming.

“I first started [swimming] because I really, really hated physiotherapy!” Jessica admitted, to the point that as a child she “would refuse to go” to her appointments.

Jessica Tinney

“I was originally in swimming lessons and my mom put me on a team. Then, when I went to my doctor’s appointments, they asked if I did physio, and I said no, I swim this many times a week. They said, ‘Great! Keep doing that and then you don’t have to go to physio.’”

She would begin her competitive swimming career in earnest as a teenager, but “my love for the sport grew from there. That's how I first got into it,” she shared.

After graduating from Queen’s this June, Jessica will be taking a year off school, but is actually considering a return to school the following year to study physiotherapy, equipped with her newfound experience in patient-oriented research.

We’re grateful to Jessica for her contributions to our Knowledge Translation team and wish her the best of luck in Madeira. We’ll be rooting for her and we’re excited to see what comes next!

Meet 2021 Summer Student: Chloe Janse van Rensburg

This summer, CHILD-BRIGHT also welcomed student Chloe Janse van Rensburg. Chloe participated in the studentship training sessions while working with CHILD-BRIGHT Parent Peer Mentor Carrie Costello and PIUO Family Liaison Laesa Kim on their project, which was funded by a CHILD-BRIGHT Collaborative Mentorship Grant. Their project examines the benefits and drawbacks of asking parents to use their personal networks (such as social media, email, and other connections) to recruit for research.

Here’s what Chloe had to say about the experience:

“I had a wonderful experience working on a CHILD-BRIGHT project this summer. Not only has my knowledge about the research process increased, but my eyes have also been opened to the worth of patient engagement in research.

Prior to working on this project, I did not have any research experience, so having the chance to see the ways in which a project progresses, as well as being able to work with an amazing team, was such a great opportunity. I learned many things, including how to thematically code data, how to identify important things to consider when conducting focus groups, and to value the importance of authentic engagement.

I hadn’t really considered a career in research previously, but after this experience it is definitely on my list of potential career goals. If not a career in research, I will most definitely be able to use some of the things that I’ve learned this summer in other careers! ”

Meet 2021 Summer Studentship Recipient: Claire Dawe-McCord

Working with our READYorNot project as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Claire Dawe-McCord conducted a review to identify key issues and policies that need to be improved relative to the health care transition of youth from the pediatric to adult care settings. She also worked with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She took on a leadership role within this group, co-facilitating meetings, preparing materials, consolidating discussion questions, and incorporating feedback from the PFAC into the team’s work.

Here’s what Claire had to say about the summer student experience:

“The CHILD-BRIGHT Summer Studentship taught me many things. As someone who has previously worked as a youth patient-partner, I have experienced many different kinds of patient engagement, including patient and family engagement in research, but I had yet to be on the other side of the equation. This summer I came to appreciate just how much work goes into creating meaningful engagement. I have come to realize how easy it is, even for researchers with the right intentions, to quickly slip back into the habit of consulting with patients instead of truly engaging.

This summer, I learned that to have “good” patient engagement in research, it is vital to keep open lines of communication between the research team and the patients, families, and caregivers involved. With proper communication, you can ensure that research priorities are set together and that everyone at the table is clear about what is expected of them, whose voice they are representing, and how they should engage with each other moving forwards. I also realized how engagement and partnership cannot be a last-minute thought; it has to be at the heart of your planning from the very first day.

As someone who is hoping to pursue a career in medicine and will likely have to do much more research throughout my life, I am hoping to incorporate my learnings into the care I provide, the research I conduct, and the way that I interact with others.”

Meet 2021 Summer Studentship Recipient: Clara Moore

Working with our CCENT project as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Clara Moore focused on data analysis and visualization and assisted with a meta-analysis of CCENT’s 16 measures administered over an 18-month period to capture outcomes such as stress, mental health, and experience of care delivery. 

Here’s what Clara had to say about the summer student experience:

“I am extremely grateful that I was able to gain such valuable new skills through the CHILD-BRIGHT Summer Studentship Program. Not only did this experience firmly reinforce my passion for patient- and family-centered research, but it also taught me how to engage and collaborate with patients at all points of the research process.

The most important lesson that I took away from this summer was how to create meaningful and authentic partnerships with patients and families. As a researcher it is not enough to simply include a patient or family member as a “partner” on a project. Instead one must carefully consider how a patient-partner can best contribute to the project as an expert and ensure appropriate compensation for their time and knowledge.

As I move forward in my career as a physician, I hope to be able to engage in more patient-oriented research projects. When that day comes, I feel confident that I will be able to authentically include patients and families in each step of the research process and ensure that their expertise is valued in order to produce research that is meaningful and useful for the community of patients that it is intended to serve.”

Meet 2021 Summer Studentship Recipient: Laura Diamond

Working with our CCENT project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Laura Diamond extracted and cleaned data on mental health resource use in parents of high-risk infants four months after leaving the Neonatal Intensive Care Unit. “Cleaning” data refers to removing incomplete or invalid entries from a data set. Laura summarized the demographics and mental health service use of these parents and performed a statistical analysis to identify if any markers from the infant’s NICU admission could predict parent use of mental health services after discharge. Laura and the CCENT team are currently summarizing the findings in a manuscript.

Here’s what Laura had to say about the summer student experience:

“I feel extremely fortunate to have participated in the CHILD-BRIGHT Summer Studentship Program this summer, working with the Coached, Coordinated, Enhanced Neonatal Transition (CCENT) team at the Hospital for Sick Children.

For my research project, I investigated mental health resource use in parents of infants in seven neonatal intensive care units (NICU). Parents of infants in the NICU represent an often-understudied population, despite facing an increased burden of mental illness when compared with parents of full-term, healthy infants. I appreciated the opportunity to spearhead some research in this field, in hopes of ultimately improving the mental health resource access and overall mental wellbeing of this population. Furthermore, with the increase in mental illness associated with the COVID-19 pandemic, conducting this research project this summer only felt more critical.

In addition to conducting the research project itself, I greatly benefited from the CHILD-BRIGHT Summer Studentship Program. Through webinars and workshops, I became more familiar with the tenets of patient-oriented research (POR) and the benefits that such research can have on patient outcomes and experiences. Specifically, I learned that effective POR involves: 1) engaging patients early, 2) ensuring diversity of perspectives (this may mean involving not just patients, but caregivers, parents, siblings, etc.), 3) ensuring recruitment facilitates the involvement of marginalized and hard-to-reach populations, and 4) maintaining compassion when engaging with patient-partners to ensure they are contributing in safe and meaningful ways. These are lessons that I will carry forward with me on my journey as a future clinician and researcher.”