By Louise Kinross
Jennifer Ryan is fascinated by exercise and how it can influence movement in children being treated for brain injuries. Four days a week she arrives at SickKids Hospital in Toronto on a red mountain bike, wearing an orange helmet. There she’s a post-doctoral research fellow analyzing how an exercise program may cause motor changes in children who’ve had a brain tumour removed. On Wednesdays she pedals to Holland Bloorview for a day of hands-on physiotherapy with outpatients. Since 2006, Jennifer has worked as a clinician with youth hospitalized at Holland Bloorview for brain injuries caused by trauma and life-threatening illness. She won this year’s Pursuit Award for her PhD research at Holland Bloorview.
BLOOM: What is your role at the SickKids Research Institute?
Jennifer Ryan: In November I started working with the Mabbott Lab for brain plasticity and repair. Dr. Mabbott’s department focuses on neurosciences and mental health. The primary research I’m doing looks at the effect of aerobic exercise on children who have been treated for brain tumours. Aerobic exercise has been studied in a bunch of different clinical populations and it’s thought to stimulate the production of myelin, which is the white matter areas of the brain. Dr. Mabbott is looking at the cognitive changes associated with exercise, and I’m looking at whether they link with motor changes. We’re looking at the impact of exercise on a whole brain level.
BLOOM: How did you get into physiotherapy in children’s rehab in the first place?
Jennifer Ryan: I thought I was interested in health care in high school. I always had an interest in science and played lots of sports and was interested in the anatomy and physiology side of things. I coached youth soccer for a while and I enjoyed teaching the kids different skills, breaking down where they were having challenges, and figuring out a way to speak in language that works for them. I did a coop nursing placement that rotated between different areas of a hospital and one of the areas I really enjoyed observing was a physiotherapist working with a patient in stroke rehab.
Until I started physio school, I didn’t realize there was an option to work with children.
It seemed to me that there was an added challenge with children, or more pieces of the puzzle to put together. You have to implement a treatment program and set goals, but also make it fun and playful. I did a placement at Five Counties Children’s Centre in Peterborough and it solidified my desire to get into pediatrics.
BLOOM: What are the greatest challenges of working with children with brain injury?
Jennifer Ryan: Whether you’re working with inpatients or outpatients, we work in an imperfect health-care system. When you’re planning to discharge someone from inpatient you see how these services in the community are not well coordinated, they’re often underfunded, and in some areas of the province, including Toronto, they could be non-existent, depending on what the child needs.
The greatest challenge I see is this imperfect system and how it has massive implications for the children and families we work with. We’re continuously advocating for services and trying to help families navigate the processes. It weighs on us that we can’t solve all of these problems.
BLOOM: What is unique about working with children with acquired disabilities?
Jennifer Ryan: In the inpatient stage, it’s very emotionally charged. The children have gone through a life-altering event and there’s a lot of stress that families have different abilities to cope with. We definitely feel that.
In the inpatient stage it’s really hard to foresee what a child’s long-term challenges will be. They often make a lot of improvement. As they move into the outpatient stage, there’s more of a plateau in the recovery and we can see what will be residual challenges. Maybe the child won’t be functioning at the same level as prior to the injury, or maybe they will function at the same level but the way they do things won’t look [the same]. Obviously there are difficulties with families accepting that, and I’ll have the same discussions about this many times.
BLOOM: I’m assuming it’s a fine balance between being clear on what the disabilities may be but maintaining optimism?
Jennifer Ryan: You want to be supportive and not take away hope but you want to be realistic. It’s an ongoing learning process for me because every situation is different.
Families are different in their readiness.
It’s trying to meet the family at the stage they’re at, focusing on what they’re going to take in at that moment and recognizing we’ll have ongoing conversations about it. We may have the exact same conversation a second time because they haven’t processed the information. I will still come away from a session and think ‘They didn’t hear what I said, or they didn’t process that.’
These conversations are a soft skill and it’s being able to gauge how blunt, for want of a better word, you need to be. Sometimes people need to hear something more direct, and sometimes they need it to be less direct.
I try early on in conversations to be more direct than saying ‘We don’t know where you’re going to end up.’ I try to be more concrete than that, and share what I’ve seen in my experience, while saying that we don’t necessarily know what the future holds for you.
BLOOM: What emotions come with your clinical role?
Jennifer Ryan: Obviously there’s the joy and happiness side. That’s what really motivates people. It’s rewarding to be able to work with a team where I’m interacting with children and their parents and other clinicians. It could be a child accomplishing a goal and seeing how they work towards it—that’s really fun. Or it could be going through the process of supporting a family with our team and feeling like all the pieces click together. So if we step back we can say ‘Everything ran well with that’ and we can be proud of what we’ve accomplished and know we’ve helped someone.
The biggest motivation I have is learning from the perspectives of families, children, clinicians and students.
On the other side, there’s a fair amount of frustration and worry. It’s discouraging when you’re trying to navigate a process and get services for a child and you encounter barriers. That weighs on you. We worry about how our inpatients will manage when they’re outpatients, and when they’re outpatients, we worry about how they’ll manage in the community.
BLOOM: Do you do anything specific to manage stress?
Jennifer Ryan: My ability to leave work at work is an ongoing process. I don’t think I’ve perfected that yet, and it’s something I continue to work on. If I’m frustrated or worried I try to focus on what I can control in the situation and address those factors. I also find it helpful to commiserate with other colleagues, or even to talk with parents and be open about the limitations of the system.
I try to inject a lot of humour into my day. I find humour is motivating for the kids and helpful for me and others. Once I’ve left for the day and I’m home I’ve come to realize that I need to have some quiet time to refuel. I avoid over-scheduling myself as I need downtime to emotionally recharge. I may go for a bike ride with my husband or read with my kids or watch a movie with them.
I think different outlets work for different people. I know some people like to go out and be social, but for me, I need to remove myself from social interactions.
BLOOM: We’ve talked a bit about this, but what are the greatest joys of your clinical work?
Jennifer Ryan: In an outpatient setting, I love to see not so much improvements they make in my session, but when they come back and tell me how they’re applying what they’ve learned outside of our sessions. It’s hearing them say they signed up for a dance program, or maybe when they start walking down the stairs at home and it shows me they’ve gained the confidence and the skill.
BLOOM: If you could give yourself advice on your first day here, with the benefit your years’ experience, what would you say?
BLOOM: To ask questions, and to look to the experts, or to be wrong. To this day I’m still asking questions and there’s no real set answers to a lot of the challenges we encounter.
It’s knowing that the parent is the expert of their child and drawing upon their experience to understand the inner workings of the child. It’s asking ‘How will I motivate this child? What is something that really interests them? What is meaningful to them?’ You have to take into consideration what’s happening outside of therapy, or you’re doing a disservice to the child. The intervention won’t work if it doesn’t translate into the child’s life.
You need to be open to a lot of perspectives. With inpatients, I’m asking other clinicians what they’re seeing, and now with outpatients I’m talking to therapists in a child’s school board. I want to use information from all of the different settings to see the whole picture.
The other thing is to understand that you can’t solve all problems. I’m still struggling with that. If you can’t solve a problem it’s acknowledging that, and doing your best to approach it and try to think outside of the box.
BLOOM: You recently received the Pursuit Award for your research at Holland Bloorview. Can you explain that work?
Jennifer Ryan: What inspired my PhD work was that a lot of research for children with brain injury focuses on the cognitive and emotional side of things, which is very important. But there was less evidence to support what we do in physio.
I chose to do an intervention study where before kids had physio in inpatient rehab, they received a type of non-invasive brain stimulation, a mild electrical stimulation to a specific area of the brain. It’s called transcranial direct current stimulation.
The idea is that by providing that stimulation to a motor area of the brain and then going into physio, we were hoping to see that it could increase or expedite some of their learning of motor skills.
They’ve done a lot of research of brain stimulation in adults with stroke and children with cerebral palsy, but nothing in this early stage of pediatric brain injury rehab. It was a feasibility study because we didn’t know if kids at this stage of recovery would tolerate it.
We also wanted to see if the study could be part of an existing program. Unfortunately we didn’t have a lot of kids that met the eligibility criteria, which may have been related to Covid.
We did have one youth where we could compare, on a very preliminary level, what change he made in his gross motor skills to what is associated with typical recovery. If you looked at the average change seen in youth with brain injury, this youth was double the average. But within that average there’s a lot of variability because kids with brain injury are so different.
BLOOM: What got you excited about your work at SickKids?
Jennifer Ryan: About 30 per cent of kids with brain injuries who are admitted for inpatient rehab at Holland Bloorview have had a tumour and received some sort of treatment for it. But they’re not usually eligible for studies on brain injury because they’re still receiving radiation or they aren’t well enough to participate.
I wanted to learn what underlying changes in the brain are seen with different treatments with this population, to see if we can optimize treatments for a child with a particular injury.
Most of my time is spent analyzing data here, so it’s more of a scientist role as opposed to administering the treatments.
My position at SickKids is temporary and my hope is to get a role in a pediatric research institute where I can develop a program that looks at physical activity and how it enhances different types of motor recovery after brain injury. But it would include all diagnostic groups, including those with brain tumours.
BLOOM: If you could change one thing in children’s rehab for kids with brain injury, what would it be?
Jennifer Ryan: That’s a fantastic question. It would be two things. The ability to provide the same resources to all children, regardless of where they live, and to be able to address what you think is clinically most appropriate.
When we’re discharging inpatients across Ontario, we should be able to access the same level of care, whether the child is in Sarnia or North Bay or Mississauga. Unfortunately, different children’s treatment centres decide how they will provide that service. So you could be at one centre that says we will see you twice a week for x number of sessions, which is amazing, but if they come to me in my program, the most I can see them is once a week. Then there’s another place that says you can only have three visits and that’s it.
The other change would be flexibility in frequency of therapy for children who need it. For example, I only work once a week in our outpatient program, which is small, so I can’t see kids twice a week. On the rare occasion when it may be valuable for a child to have physio twice a week, it would be great if we had the people to do that. Parents who have the means can pay for a second session with a private therapist, but not everyone can do that. And that doesn’t sit well with me.
Also, if a child needs to be seen twice a week, it’s more seamless if they can have the same therapist versus seeing one private therapist and one in hospital. It’s a bit more confusing for the families to have to navigate the two.
In terms of people power, if we could offer different programs for different kids. Some kids do really well in inpatient therapy because it’s such a structured routine and they’re here every day and they see therapist x. Then when they move to outpatient it all falls apart because they don’t know me and I’m only seeing them once a week.
Before I worked at Bloorview I worked at ErinoakKids in their preschool program and while we mostly saw kids in a clinic setting, we had the capacity to go into people’s homes. That was great for some kids who wouldn’t do anything when they came into a sterile, unfamiliar environment. But if I saw them in their house, they were doing all the things they normally do.
Again, it’s a better option for some kids but not all kids. We need flexibility to meet the needs of a family in the way that works best for the family.
Jennifer’s PhD research was done in the Connect Lab and the SPARK Lab, both in the Bloorview Research Institute. Like this story? Sign up for our monthly BLOOM e-letter. You’ll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news.
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