Empowering Young Transplant Recipients Through Exercise
February is Heart Month—a time to raise awareness about cardiovascular health, including the unique needs of pediatric heart transplant recipients. Regular physical activity is essential for overall wellness, yet many children who undergo organ transplants struggle to stay active.
Astrid De Souza, a clinical exercise physiologist at BC Children’s Hospital (BCCH), is working to change that. Through innovative research, she explores how exercise programs can improve heart health, strength, and long-term outcomes for pediatric transplant recipients. We hear how Astrid is working together with transplant cardiologist Dr. Kathryn Armstong to help recipients live their best life post-transplant.
Q: What are some of the biggest challenges children with solid organ transplants face when it comes to physical activity?
A: I have worked in the field of exercise and transplant for a long time. The longer I am in this field, the more I realize I might not truly comprehend the challenges our patients face. This is why we are doing our current project of looking at the facilitators and barriers to physical activity in our solid organ transplant patients.
There are different things that I have seen in practice and suspect are an issue. For children to be active, they need the skills and abilities to engage in physical activity and they need to be able to prioritize participation in physical activity. This can be a challenge for our patients. Sometimes, there are long stretches of time where children are sick which in turn means they are missing out on developing key motor skills. In addition, when there are lots of concerns around health, it can be difficult to prioritize physical activity. Access to age-appropriate programs that address the unique challenges of our patients can also be an issue. Finally, attitudes towards physical activity and the knowledge and understanding of why we need to move may also be lacking.
Q: You’ve explored text messaging, home exercise programs, and virtual reality in previously ODTRF-funded grants—what have you learned from these different approaches?
A: The goal of all these projects has been to increase connection with our patients and to provide them with new and innovative ways to receive care from our team. All of these projects built on each other.
In the first project, we established a way to connect to our patients via text messaging. This tool also gave us a way to monitor exercise behaviours and make changes when needed.
When we delivered our virtual exercise program, our text messaging service continued to be a way to communicate with our patients. In this project, we were able to deliver an at-home exercise program that could meet the individual needs of our patients. Those who participated liked being connected to other patients with solid organ transplants, but some participants said our program was boring!
Our virtual reality gameplay idea was from one of our patients who was using this technology to exercise. We thought this would be a less boring way for our patients to exercise but we were missing the connection piece.
Stay tuned! We still have more learning to do from our patients, which the current study will help to shed light on.
Q: How do you hope this research will change the way physical activity is discussed and supported in the transplant community?
A: What I really hope patients, families, and health care providers realize is that physical activity is an underutilized tool that can improve the health of solid organ transplant recipients.
Q: Why is it important to involve patients and families as partners in shaping research like this?
A: In my mind, there is no research without patients. Patients and their families are always at the center of our research. It is great for us to think that we have the “answer”, but we don’t have the lived experience, and that experience is everything. It shapes everything that we do.
Q: What motivates you to undertake this work?
A: Doing this work is what keeps me in this field! I have so much more to learn from our patients and I am committed to continuing to work towards optimizing the care of our solid organ transplant population. I hope in the process that I can impart my joy for physical activity to patients and show them how physical activity can be used to not only enhance their care but also their lives beyond transplant!