For this scientist, a healthy weight isn't a number

By Louise Kinross

Amy McPherson is a scientist at Holland Bloorview who is co-lead of our Centre for Leadership in Participation and Inclusion. Amy’s research looks at health promotion and obesity in children with disabilities. Eight years ago she packed up her life in Britain and moved to Toronto to become a scientist in our Bloorview Research Institute. “I’d been teaching psychology and sociology to medical and nursing students, and I wanted a new adventure that would focus on my research,” she says.

BLOOM: What led you into the field of children’s rehab?

Amy McPherson: In the U.K. I did my PhD in self-management in childhood asthma. My research has always looked at empowering kids to look after their health by giving them the knowledge and skills—but also the feeling of control over their health—so that they can manage a chronic condition.

When I saw a job opportunity in Participation and Inclusion here it encapsulated my philosophy of working with children with long-term conditions to help them participate and be as active as they want and can be. I did an interview on Skype and I came here for a meet-and-greet. Then I moved 3,000 miles.

BLOOM: Was that a hard decision?

Amy McPherson: It was a no-brainer. I was really drawn to the fact that no one here talked in terms of deficits in kids with disabilities. I met people who were committed to giving kids with disabilities a future that was as meaningful as any other kid’s future.

BLOOM: Can you describe your research?

Amy McPherson: When I first came I was interested in our Busy Bodies program, which promoted healthy eating, physical activity and feeling good. My office was embedded with clinicians in Therapeutic Recreation and Life Skills. That was a phenomenal opportunity to understand what went on in the hospital from a clinical perspective. I worked with therapeutic recreation specialists to understand what the kids in the program thought about health: ‘So you have a disability, what does that make health look like to you?’

It was a great introduction to rethinking my notions of what had been quite a medical approach to self-management, and looking at why participation matters. That was a springboard into looking at different aspects of health, wellness and happiness and working with kids with an existing condition to see what they want their health to look like.

BLOOM: Where does weight fit into that?

Amy McPherson: There’s a two to three times higher prevalence of obesity in kids with disabilities. That puts them at risk of the same secondary conditions that any child with obesity faces. But in addition, it can be harder for a child with a disability who is heavier to move around, do self-care and be independent. Different diagnoses also come with specific challenges that make it hard to manage weight.

BLOOM: How can we help clinicians and families address weight issues?

Amy McPherson: I’m very interested in how we talk about weight and weight management. Often kids get weighed and measured when they come in for regular checkups, yet we hear from clinicians that they have concerns about talking about the topic. This is true with kids in general and their families, as well as kids with disabilities. Doctors don’t feel confident and are worried they’ll ruin a relationship. It’s a hugely stigmatized issue and by doctors saying ‘I don’t want to offend anyone,’ they’re acknowledging the implicit stigma in society that higher weights are bad. We want to find ways to address weight and wellness that are not stigmatizing and judgmental, but supportive and positive.

BLOOM: How do you do that?

Amy McPherson: We’re doing something super cool. Working with Christine Provvidenza, we got Centre for Leadership funding to develop a knowledge translation casebook that is a practical handbook for health professionals about how you talk about weight. It will have things like sentence starters and scripts and simulations of positive and less-positive experiences. It will also have case studies and learning guides and will talk about what the evidence says.

One of the fun parts is that we’re working with families, youth, clinicians, researchers and students to co-develop the content for this handbook. It will be online and interactive. It’s for all children and parents, but will also have chapters addressing common challenges related to different disabilities.

BLOOM: What’s an example of neutral language?

Amy McPherson: The doctor could say: ‘Would it be okay if we talked about how you can feel healthy and energized?’ Or ‘Would you be interested in knowing more ways to stay healthy? How can I help?’

We want to encourage clinicians to have a conversation about wellness that suits the child. You may live in larger body, it doesn’t bother you and you have no medical complications. So we talk about what makes you feel well. Or, you might have a higher weight and a lot of medical complications and are distressed about it. So it may be appropriate to focus more on the weight and work together to reduce those health risks. But we need to always address it in a positive way. There isn’t a one-size-fits-all, and not everyone who weights over ‘x’ has to be subjected to a medical intervention. It’s not realistic and the evidence doesn’t support that.

Research shows that the vast majority of people who lose weight regain it. Physiologically our bodies will always try to put that weight back on, and it’s got nothing to do with will power. So what is sustainable for this person, and what does health and wellness mean to them? That’s hard for people to get their minds around, because we’re so used to saying ‘let’s fix this, let’s get the number down.’ But we’re setting up people to fail when we do that. There are physical ramifications to putting on and losing weight and it can also be incredibly damaging psychologically.

BLOOM: I’m assuming that one of the reasons doctors don’t like to talk about weight with children is that no one really knows what to recommend?

Amy McPherson: There’s very little evidence about how talking about the topic in different ways affects outcomes. In the future, we’d like to evaluate our knowledge translation casebook in different health settings to start to understand this area more.

BLOOM: What do you love about your work?

Amy McPherson: I love designing ways to figure out what’s really important to individuals and how we can support that person to work towards that. I’m a huge fan of strengths-based approaches. What are you really good at? What are your resources and strengths? How can we support you to thrive, whatever that means to you? I’ve worked on topics like incontinence, sexuality, weight management and wellness. We just received CIHR funding for a study on solution-focused coaching for kids on health promotion goals that they set for themselves. That’s for kids with spina bifida and cerebral palsy.

BLOOM: What’s the greatest challenge of your work?

Amy McPherson: The hardest thing is to break away from the idea that health is a number and it’s just a case of eating less and moving more.

BLOOM: What emotions come with this work?

Amy McPherson: A whole mix of emotions. It’s exciting to be part of a movement that’s enhancing the field. I’m very comfortable with an approach on wellness that is individualized and means something different to each person. It compliments with my own personal philosophy that rather than ‘How can we get you to live in a smaller body?’ the question should be ‘What do you find motivating?’ A person’s best weight has been described as whatever weight a person achieves while living the healthiest lifestyle they enjoy, which I think is a lot more feasible and positive for most people.

The work is also inherently frustrating because it’s complex, and you’re trying to figure out the best way to move forward without doing damage to anybody.

The stigma around kids with disabilities and people who live in bigger bodies makes me feel very sad. And when you have the two together, it’s an intersection of multiple stigma.

BLOOM: I would like us to do more research looking at how we can help children feel comfortable in their own skin. I’ve heard of kids with amputations who wore hot, heavy prostheses for years, even though they didn’t help functionally. And then when they feel more comfortable with their bodies, they abandon them. One woman with no arms in a BBC interview described it as being her ‘independence day.’

Amy McPherson: There are huge parallels between the stigma associated with size, and the stigma associated with other body differences. Difference is not emphasized enough. For example, very often the health benefits of things like being active and eating well are overshadowed by weight loss and unrealistic body ideals. Traditionally in rehabilitation, we haven’t been so good at looking at the big stuff that matters to youth with disabilities—beyond the physical, the function, the fix. We hear that our kids in school often don’t get health and sexuality education. I’ve heard of students with disabilities being told to leave the classroom during those sessions because they don’t need it. We can do so much better.

BLOOM: If you could go back and give yourself advice when you were just starting out in this work, what would it be?

Any McPherson: You’ve got to be really tenacious. It’s a bit of a roller coaster, but you need to stick with it and stick with high standards at all times. And collaborate. That’s where the fun is—in working with other scientists, clinicians and families to come up with, if not solutions, then approaches to the things that are really important to children and families.

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Best source of rehab ideas? Parents, says research head

By Louise Kinross

Biomedical engineer Tom Chau came to Holland Bloorview the same year I did—in 1999. Tom trained computer chips to empower children who can’t speak or move in conventional ways. His devices interpreted a child’s hums, eye blinks or physiological signals and turned them into words, a mouse click or even music. For several years I had the privilege of promoting media stories about his work. In 2012 Tom took over as head of the Bloorview Research Institute. Above, members of our children's advisory test out therapeutic video games developed here.

BLOOM: Why did you get into the field of children's rehab?

Tom Chau: I used to volunteer at Riverdale Hospital. My mother created every opportunity for us to interact with people who were going through very significant challenges in their life. At the hospital there were many people with severe disabilities. I helped to feed some of the patients and sometimes my siblings and I did entertainment and played the piano. That’s where I started thinking about how technology could be used. My mother motivated us to have that consciousness and to try to be helpful where we can.

BLOOM: How has our research institute changed since you took over?

Tom Chau: First, we’ve made a number of very deliberate steps to bring clinical practice and research closer together. Our clinical investigator appointments and centres for leadership are examples. We’ve even added ‘clinical researcher integration’ as a competency on all scientists’ performance appraisals.

BLOOM: Why is that important?

Tom Chau: Researchers are trained to ask interesting academic questions, and that’s great if you have lots of money. But because our resources are so constrained, we have to make sure we’re focused on work that will have a near-term clinical impact. The questions we’re asking need to be really important ones, not just interesting or academic ones.

Another change in the research institute is our partnership with families. In large part through the hospital’s robust family leadership program, we’ve been able to jumpstart an engagement program in research. We now have families reviewing research grants before we send them out and doing consultations with researchers where they comment on their ideas.

BLOOM: What kind of changes have you seen?

Tom Chau: One area where families have really helped us is in improving the feasibility of the grant. Sometimes a researcher has an excellent and robust protocol but their idea for how to involve children and families won’t work. So families can help us improve the execution of the grant. They also help us tweak questions. We might be on to something but the question needs to be modified to make it more relevant to families.

The other thing we’ve done in the last four years is raised academic standards. The academic environment has never been as competitive in my career as it is now. Success rates for grants are so low. We needed to raise the bar internally, and today we’re so much further along in publications and external research grants. All of the scientists have stepped up.

BLOOM: What is the current focus of the research institute?

Tom Chau: One underlying thread is our focus on maximizing participation: what really matters to that child and family and can we enable that to happen? We’re not focused on increasing two points on a standardized test when that doesn’t translate into anything in the child’s real life. We have a growth strategy for our four centres of leadership: participation, child development, brain injury and innovation. And our scientists are clustered under those themes.

There’s an increasing emphasis on maximizing brain plasticity. So, for example, there’s an interest in getting children moving at a very young age as infants, even though they may not be able to move in a functional way when they grow up. Having that experience of moving through space—the sensory experience, feeling the wind, feeling the body move through space—may help to strengthen brain networks so that they’re more adaptive in learning other motor skills. We’re learning that the brain is more plastic than we thought—throughout the life span. It gets harder as you get older, but it’s still possible to rewire. And there are things we can rewire that we didn’t think we could rewire and side benefits to forming certain kinds of connections.

BLOOM: What is your role leading the institute?

Tom Chau: The most important part of my mandate has been to build up the other scientists as independent investigators—to grease the wheels or skids for them to take off by providing the resources they need to be as excellent as they can be. That might mean providing bridge funding, helping to support a student, helping them acquire instrumentation, nominating them for external awards to build their profile or editing grants to make them as competitive as possible.

BLOOM: How many students do we have in the institute?

Tom Chau: Over 120 trainees from summer students to post-doctoral students.

BLOOM: What are some of the challenges facing scientists working in pediatric rehab?

Tom Chau: There’s been a real dry spell in federal funding for health research in the last three years and the process has gotten tougher and tougher. Success rates with the Canadian Institutes of Health have never been this low and that’s really discouraging. The first budget from the Liberals already injected something like $30 million into CIHR, so things are going in the right direction, but it will take a number of years to increase the investment.

Another challenge is this small market issue. I was at a workshop in Washington two weeks ago and that was one of the first things the National Institutes of Health identified: we’re dealing with a small marketplace and people don’t like to invest in things that serve a small market. There’s no economic argument. That said, one in seven people in Canada and one in five in the U.S. have a disability, so it’s not that small.

We’re starting to think about potential secondary applications of the work we’re doing that would give us access to larger marketplaces.

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

Tom Chau: Having been a parent myself, I think that I see less of a difference between a child who might be a client here and my own children. They’re interested in the same things, like video games or movies, and may have the same worries. The good fortune I’ve had with students with significant disabilities coming through our doors has opened my eyes in terms of how similar these people are, despite the daily challenges they have. They want to achieve, they want to have friendships.

BLOOM: What have you learned from families?

Tom Chau: Over the years I’ve come to realize that parents are truly the experts. If you think about the innovations we’ve done that people think are so cool and such great ideas—the ideas came from parents. For example, our thermal switch that captures the posture of the mouth was the idea of a mother.

BLOOM: What are you most proud of in the research institute?

Tom Chau: I’m most proud of the people. The people are truly excellent. They’re very collaborative. When a student parachutes in for a couple of months they say our culture is out of this world. They say: ‘I feel so supported here, everyone was so helpful.’ I’m also proud of the fact that we have such an interdisciplinary research institute. Nowhere else will you find such an eclectic mix of disciplines united with a common mission and passion. We have folks doing technology, social science and clinical science all under one roof. All those perspectives coming to the table leads to some really creative ideas.

BLOOM: How do you find a balance between accepting disability/difference and changing it?

Tom Chau: When I first got the Canada Research Chair, we transferred the onus of change onto technology and took it off the child. It didn’t make sense that the onus of clear communication is 100 per cent on a child who is non-verbal, and not on the communication partner whatsoever.

I think what we think we can change is evolving, which goes back to the brain plasticity stuff. I think there’s potential for acquisition of abilities through exploiting brain plasticity that we didn’t know was possible.

First of all, you have to embrace your difference. Then there’s maximizing a child’s participation and an opportunity to teach the individual new skills through brain plasticity, and that’s fine. But we don’t ever want to lose sight of the uniqueness and the irreplaceable quality of the individual.

BLOOM: What are your hopes for the future?

Tom Chau: What keeps me up at night is the calls we get from families whenever there’s a story about our work. We get flooded with calls—not from other scientists—but from our families. There are calls from the U.S. and as far away as Australia. The need is huge and families are still so hopeful that one day their child will be able to express themselves. I hope that in the years I have left I’ll be able to enable access to communication for many more kids and families.

I’m also hoping that we can bring about transformational change in childhood disability. I dream of the day when we have kids on Parliament Hill telling politicians what they need and advocating for themselves. There’s still a lot of change we have to bring about in terms of attitudes.

Find out how you can participate in research at Holland Bloorview.

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