Students run concussion rehab program for youth

By Louise Kinross

There’s little science to show how to best help youth with concussions who continue to be bothered by headaches, fatigue and dizziness.

A new research study at Holland Bloorview is testing the impact of a six-week program of education, low-intensity exercise and relaxation on 200 youth aged 10 to 18 who have concussions, most of them sport-related.

“We want to know if this active rehab approach works for kids with concussions, and, if it does, at what time points after the injury,” says co-investigator Anne Hunt.

The study design is innovative because it’s carried out by students who are clinicians in training. This includes students in their final year of occupational and physical therapy and kinesiology.

The youth with concussions first come in for a series of brain and body fitness tests. “Based on this, we prescribe an individual exercise program that has an aerobic component, like walking or riding a stationary bike, as well as up to 10 minutes of sports-specific coordination drills, and five minutes of relaxation through deep breathing or visualization,” Anne says. “We go through our Concussion and You handbook, which covers things like how to conserve energy, good sleep hygiene and tips for returning to school.”

Over the next six weeks, the youth carry out the exercise program at home and call or visit the students running the program for support. At three and six weeks they come in to have their fitness levels and health reassessed.

“Families tell us that health providers or coaches encourage the kids to push through their symptoms, or to work at a higher intensity than we do,” Anne says. “This can make their symptoms worse or slow their recovery. We teach them what it means to work at a low to moderate intensity. Ours is a very careful, methodical program. Some kids may only be able to start at two minutes of aerobics when they first come in.”

Having students run the program has many benefits. “We tell the clients participating that they’re not just helping us learn about concussion, that they’re training these students,” Anne says. “The kids tell us they love working with the students, who are younger, whereas I’m sort of more of a mother figure. All of the students come in with a wealth of experience. For one client they may need to develop sport coordination drills for volleyball, whereas another client needs dance or lacrosse drills. The students work together, given their different professional roles, to divvy up the assessments and scope of practice.”

Andi McHugh, a physiotherapy placement student, says she’s gained confidence “because we’ve been given a lot of autonomy. In other placements, you’re working more closely with your supervisor. Here, it’s more self-directed learning but with peers you can bounce ideas off.”

Tesca Andrew-Wasylik, who just finished a five-week placement in the concussion program, agrees. “Being part of a student-run clinic is such a unique experience. I've enjoyed the challenge of being presented with a problem and finding a way to solve it independently, while still knowing I’m being supported by my supervisors. I think it’s very successful in preparing students for the real world and reinforcing autonomous learning. I’ve learned so much about collaborative practice and family-centred care, as well as learning from the families and kids that I worked with.”

Tesca graduates this year as a physiotherapist. She's shown working with Emma, 10, in the photo above.

The research is funded by Scotiabank, and is cost-efficient because it’s implemented by students rather than staff.

Study results are expected in two years and the researchers hope they will inform best-practice guidelines on rehab for youth with concussion.

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Taking away a parent's guilt may be 'my best gift'

By Louise Kinross

Physiotherapist Kelly Brewer didn’t picture herself working with children. For 11 years she worked with adults in the intensive care units at St. Michael’s Hospital. “I loved the teamwork, I loved the excitement, the new learning and the variety,” she says. “There was always something different working in intensive care.”

But then in 1990 her kids began taking swimming lessons at Holland Bloorview. “St. Mike’s had the best feeling in the world,” she says. “There was something so caring about that organization. I felt there was a similar feeling here—there was a real caring you could feel as you walked through the corridors. At the time I was looking for a change of job. In those days Bloorview was organized by ages and there was a job in the teen unit and I thought ‘I can work with teenagers.’” BLOOM interviewed Kelly about her 26 years of work here since.

BLOOM: What was it like to move from adult to pediatric care?

Kelly Brewer: I found it very hard and also a little sad.

BLOOM: Do you mean you missed your adult work, or that it was hard to adapt to the new work?

Kelly Brewer: Both. In acute care, turn over happens so quickly you’re always seeing new clients. It’s very fast-paced, where rehab, especially in those days, was much slower. That took me a long time to get used to. For my first two years here, I went back and worked one weekend a month at St. Mike’s to maintain my cardiorespiratory skills.

BLOOM: While you were working here full-time?

Kelly Brewer: Yes, my husband would look after the kids.

BLOOM: So what did you do when you first came here?

Kelly Brewer: I worked with teenagers on the brain injury unit from Monday to Thursday and on Friday I worked in the spina bifida clinic. It was a huge learning curve. I loved the kids, but often felt sorry that they had me for their PT! I was naïve and unrealistic in my expectations of what was possible and what I thought families could do.

BLOOM: Do you mean in what families could carry through at home?

Kelly Brewer: Yes. Over time I realized these families were coping with double what I was coping with. I was raising three kids while working full time and I certainly didn't have much energy at the end of the day. The families taught me a tremendous amount.

I remember telling a family ‘I don't recommend that your child do stairs this weekend—it's still a little early for that.’ Then they came back and said ‘We did stairs because that’s the only way we could get her up to her bedroom.’ And I thought ‘stupid me.’ It was a real eye-opener. 

There was a lot more to learn here from the families than in acute care, because in acute-care everything is so condensed, you might only work with someone for a month. But here, you get to know the families and play a very much larger role in a person’s recovery.

BLOOM: What else did you learn from families?

Kelly Brewer: It broke my heart to hear about the financial constraints people were under. So many times I would say ‘Well, could you think about going out to the gym?’ and the parent would say ‘We don’t have the money and I don’t have the time.’

The families taught me about the ‘busy-ness’ of their lives. You can’t judge because you aren’t living their life. There are single parents, parents with mental illness, parents with multiple kids, parents going through divorces. You can’t control everyone’s situation. I’m way more realistic as a therapist now. When I’m setting anything up I do it collaboratively and I say ‘Does this work for you?’

BLOOM: What is a typical day like?

Kelly Brewer: I still work Monday to Thursday in the inpatient brain injury unit and Fridays in the spina bifida clinic. With the inpatients, I’m responsible for assessment, development of goals and active treatment. I see the kids four to five times a week and also assign some care to the physio assistant. We attend family meetings every four to six weeks, and also participate in weekly rounds.

There’s a fair amount of documentation to complete. Our kids are typically followed by another provider when they leave Bloorview, so we have to make sure there are reports to share with external agencies. In theory, computers are supposed to save us time, but right now going through all the different screens takes more time then when we used to dictate, which takes away from clinical time.

BLOOM: How many kids would you work with in a day?

Kelly Brewer: Usually four or five, so I typically spend an hour with each child.

BLOOM: Wow, that’s a lot.

Kelly Brewer: Every child is different. Some kids are more straightforward than others. Some clients are very challenging. But the good thing is we work in a team so if I have any questions or concerns there are really skilled people I can speak with.

That’s why I love doing what I do. I love the whole teamwork thing. If a child has behavioural issues, we have psychologists and child and youth workers and child life specialists to consult with. We also work very closely and collaboratively with occupational and physical therapists.

BLOOM: What’s an example of a challenging situation?

Kelly Brewer: It can be very hard to work with a child that isn't motivated or doesn't want to be here and has issues attending therapy. Sometimes a child's physical problems are challenging to treat and I need to consult with other PTs that I work with for advice. It's also very difficult when you just can't help your client achieve their goals.

BLOOM: It sounds stressful.

Kelly Brewer: We frequently have to deliver bad news. I was just talking to a parent on the phone before I came here. She had to go back to work, so I had to phone her with assessment results and goals. That’s the hard part. The good part is that at least I’ve met her once and we had a good conversation that one time. But I can’t read her body language on the phone, and I had to give her some news about how I don’t know how much of a difference therapy can make in her child. I try to give news in a way that is realistic but still hopeful. I hope I do it well and I hope someone would do the same for me.

BLOOM: That must be hard.

Kelly Brewer: It is stressful. I’ve matured over 25 years. I consider myself to be very empathetic. I try not to be judgmental and I’m very honest and open, just like I’d want to be treated. But it’s hard to give that information and I feel badly when I have to give news that is sad.

BLOOM: What do you do to cope with your own emotions?

Kelly Brewer: I talk a lot to my team members—the PTs and OTs—about the kids and that really helps. The best piece of the job is who you work with, and I work with some great people.

I also walk back and forth to work and that really helps because I plan my day. It’s a gift. I think about things when I’m coming in and how I will deal with something. If I have a difficult conversation I can rehearse it. That’s not to say that I won’t wake up some nights and think ‘Shoot, did I do that right? Did I say it right? Should I have given them that walker?’

I do wake up and worry and stress about things. Having family responsibilities is a distraction. All three of my kids have worked here and all volunteered here. Sometimes things came up at the dinner table when they were young. You can’t help but share what you’ve been through, what you've learned and how it has affected you.

BLOOM: What do you love about your work?

Kelly Brewer: A couple of things. I love the families I interact with. And I love the teamwork. It’s very cohesive and intensive and you have to work together. I also really like as an organization the whole client- and family-centred care focus. I went to that conference years ago at the Institute for Patient and Family-Centred Care. It’s great that the organization promotes this philosophy, and it’s great to feel comfortable with your relationships with families and that they’re so included in what we do. I love the teams I work with. I love working with nursing.

BLOOM: From when we were inpatients, I know that nurses are the heart of what we do. They spend the greatest amount of time with families.

Kelly Brewer: We need them. I need them. Having good relationships with the nurses is fundamental to the work I do. I know them, they know me and we’re working together for the child. Sometimes they don’t get the merit they deserve.

I have to have positive relationships with nurses on the unit. Let’s say a child’s having a bad day and the nurse is able to share that with you. They need to know what’s going on and we need to know what they’re doing in their care that’s supporting all of this. We’re equal players.

BLOOM: Have your thoughts about disability changed over the years?

Kelly Brewer: When I first came I was much more uncomfortable with people with different disabilities because I’d had no exposure as a student or a physio. I’m way more comfortable with it now, I think at all levels, including emotionally.

BLOOM: How have you changed as a person as a result of your work?

Kelly Brewer: I was never known as an overly emotional person, and I guess I’m still not. But I’m way more pragmatic, honest and realistic.

BLOOM: Has that influenced you in your own life?

Kelly Brewer: I have to laugh. My daughter will say ‘Oh mom, I had a really hard day.’ And I’ll say ‘Well, so have I. There are people having much harder days than us out there.’ And she’ll say ‘That’s not the answer you’re supposed to give! You’re supposed to be compassionate.’ Our work highlights how difficult some people’s lives are and you realize the complaints we have are nothing compared to that. 

BLOOM: So you have perspective.

Kelly Brewer: Yes. I know how hard it is to work full time and raise kids who don’t have a disability. But to put on top of that the stress of a disability is really hard. As I’ve matured, that’s one thing I’ve come to appreciate.

One thing I’m better at is having much greater empathy and understanding for my students. One of the reasons I love working here is that it’s a teaching hospital. I’m very passionate about working with students, but I understand and am much more sympathetic to them. I know how hard it is to walk into this situation.

When I was younger I was much stricter and I’m much more forgiving now. So as you age you have more wisdom and perspective and see things through a different lens. I’ve spent almost 40 years working as a physio. I feel I’m a much better listener. I don’t judge as much anymore. I really listen to a family’s story and try to understand it.

The other thing I do is teach internationally-educated physios through the University of Toronto. It’s a course on Canada and the health-care system. I hear the stories of students who have done their schooling in other countries, and it enriches my work here, which is so multicultural.

BLOOM: What advice would you give to a young ‘you’ just starting out?

Kelly Brewer: For people coming in here, I guess I would say really try to walk in someone else’s shoes. Set realistic expectations. Listen to the family. For years, I would give families a home program in spina bifida and six months later they’d come back and I’d ask ‘Are you doing any of the exercises?’ and they’d say ‘No, we don’t have time.’ So now I don’t give them a home program unless they want it. I ask if I can help them in another way.

Sometimes the greatest help I’ve given is to make parents not feel guilty. I’ve had conversations where parents say ‘Maybe if I’d stretched him more, he wouldn’t need surgery.’ So I have these candid conversations where I say ‘No, You’re not responsible for it. You did the best you could at that time and you have to let that go. It will be what it will be. [Releasing] parents of that guilt may be the best thing I can give a family.

That honesty comes from being a working parent myself. I had to deal with homework and dinner and activities and I couldn’t do everything, and I didn’t have a child with a disability. I tell families you can’t do everything, you have to find priorities and deal with them. If it’s your child’s mental or emotional health, then that’s what you need to focus on. If your marriage is the most important thing, put your energy there.

A lot of times parents have taught me the most by ignoring what I tell them to do. Then, when I really listened and thought about my own life, I had to ask why I was asking them to do something they couldn’t do—that I couldn’t do! My best gift is to listen and say ‘it’s okay, it’s all right that you can’t do this.’

BLOOM: The problem is that every parent wants to be an A+ parent. But sometimes a child’s outcome doesn’t reflect what the parent put in. There are these homilies like ‘If you work hard enough, anything is possible.’ That gives parents the idea that they control the outcome for their child. But sometimes even when parents do everything imaginable, the child doesn’t make the progress they were hoping for. Parents need to be given permission to accept their child where they are.

Kelly Brewer: In spina bifida, if the child was walking when they were six or seven, but they don’t want to now at 11 or 12, because it’s too difficult, we let the parents know that that’s okay. They aren't being a bad parent for letting their child use their wheelchair more.

BLOOM: If you could change one thing about the health system, what would it be?

Kelly Brewer: I wish there was equal access to services for families. It’s really frustrating and sad when I hear about some families in one region of CCAC getting great services, while others in another region have no services.

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First steps for a boy attached to an oxygen tank

By Louise Kinross

A couple of weeks ago I got to meet the most adorable child you see above. His name is Branko, and he's almost four, and his mom Jennifer Philp Zakic had written this exquisite piece for BLOOM about having another child after Branko was born with a rare genetic condition.

Jennifer called me from the lobby at Holland Bloorview to let me know that Branko was in the rehab gym on the second floor taking his first steps in physio. 

So I got to race up and meet Branko and his mom and dad and sister, and watch this precious little boy hold his arms down tight at his sides to stabilize himself, kind of like a penguin, and take small steps back and forth between two tables (see photo below). His task was to pick up coloured plastic bugs from one table and bring them to the other table where he matched them to pictures of the bugs. 

Branko was ecstatic with his progress and it was a beautiful moment to share.

To read more about Branko, check out this long interview with his mom: Branko, 3, has bones growing out of his chest.

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Hard work

I'm hanging out with Ben today. He worked very hard in physio. He still has great difficulty straightening his left leg, but there's been a bit of improvement. Here we are afterwards taking a break with Sir Walter Melon!

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