Tuesday, January 16, 2018

Virtual reality may help kids with autism adapt to new situations

By Louise Kinross

Many of us have less than pleasant memories of taking the bus to school or summer camp. But for children with autism, a noisy, unpredictable bus can be particularly anxiety-producing.

That’s why researchers at Holland Bloorview are working with film company Shaftesbury to create a virtual reality experience that helps desensitize children with autism before they hop on the bus.

They’ve already rented and filmed a school bus to make their scenes as realistic as possible.

“There aren’t a lot of studies that look at the safety and efficacy of virtual reality in children with autism,” says Holland Bloorview scientist Azadeh Kushki.

Azadeh hopes to start a usability study involving 30 children with autism aged eight to 18 in February.

“We’re going to look at children's physiological responses to identify anxiety triggers and work on gradually desensitizing them to their individual triggers.” It could be engine noise, a change in route, the sound and sight of an ambulance, or other children misbehaving.

“The good thing about virtual reality is you can adjust the difficulty of the situation,” Azadeh says. “So we can change the level of noise, the number of kids, or the amount of time a child waits for other children to board the bus.”

bury, which produces the Canadian drama series Murdoch Mysteries, approached Azadeh and her team with the idea. 

“About two years ago we started listening to clinicians and asking what advanced media products we could create for them,” says Ted Biggs, vice-president, Convergent/Technology at Shaftesbury. “We had developed
an app for our TV show The Moblees that ended up increasing active play in kids up to 21 per cent. Conversations with Azadeh, her team and our clinical partners in the U.S. led us to believe that this [new virtual reality] project could really help people and families dealing with autism.”

If successful, the school bus could be the first of a number of virtual experiences created to help kids with autism adapt to unfamiliar situations.

“This is a good example of knowledge translation from the academic world to industry,” Azadeh says. “We’re giving them the tools to create, and support the feasibility of, their product.”

The project is funded by the Ontario Centres of Excellence and the Natural Sciences and Engineering Research Council of Canada.

Study results are expected at the end of the summer. 

Friday, January 12, 2018

Medicine is 'ultimately a humanistic and human endeavour'

Photo by Julia Soudat for U of T News

By Louise Kinross

Last April, Dr. Arno Kumagai became vice-chair in education for the Department of Medicine at the University of Toronto. He’s an endocrinologist from the University of Michigan who studied the molecular mechanisms of diabetic complications before turning his attention to medical training. At the University of Michigan Medical School, he developed a course that paired students with patients for regular visits at their homes, to hear firsthand what it means to live with a chronic illness. He continues to run a small clinical practice as a diabetes 1 specialist. Dr. Kumagai is giving a keynote presentation at Holland Bloorview’s Teaching and Learning day on March 8 called We Make The Road By Walking: Stories, Dialogue and the Possibilities of Care. BLOOM interviewed Dr. Kumagai about how stories can influence care.

BLOOM: In your education role at U of T, you talk about the importance of the human elements of medicine.

Dr. Arno Kumagai: Because we deal with people, medicine is fundamentally an ethical activity. We have to take into consideration that we’re dealing with another person with a background, personal values and relationships, and we need to have that first and foremost in our mind at all times. Often, it’s easy to forget that when we’re looking at numbers and physical or physiological processes, and how sometimes they can go wrong, or cause issues with function.

The bottom line for me is that yes, medicine involves science, but it is ultimately a humanistic and human endeavour. Where we often go wrong is when we treat other people as objects. We assume we know who they are, and what they want, and how they would prefer to live their lives. By making assumptions, we may be completely wrong, and we impose our own values and perspectives, without asking ‘What is it that’s important to you, and how can I help you?’

BLOOM: I understand you’re talking about the importance of stories at our Teaching and Learning Day. How can stories influence care?

Dr. Arno Kumagai: In teaching medical students and physicians in training, stories have a really powerful educational role, but not only that, they have a very powerful human role. Stories are human beings’ most effective way of communicating the meaning of experience. The way we transmit meaning from one person to another or one generation to another or one group of people to another is through storytelling.

In patient care, doctors tell each other stories about patients using a specific type of language that is very different from the story that a person with a chronic illness would tell about themselves. The patient’s story may be unrecognizable to the clinician, and the clinician’s medical history may be only vaguely recognizable to the person who actually experienced it.

Often times, physicians see things only in terms of impairment of function, but it’s really the stories of the obstacles that are encountered in society and daily living that they need to hear. I work with people who have diabetes and, as a result, have disabilities, and it’s through their living stories that we understand the challenges they face. It’s not just a matter of ‘I can’t get upstairs’ or ‘I can’t hear someone talk when I’m in a crowd,’ but ‘I’m afraid to tell my classmates that I have diabetes because I don’t want them to look at me differently.’

Stories help us to begin to take the perspective of someone else and to really explore our own way of thinking and living and to reflect on who we are. The other thing with stories is that they often contain surprises. They tell us something we weren’t expecting, or that goes against our assumptions and beliefs. They have the potential of making things strange. You take an assumption and a story may challenge that assumption.

BLOOM: How are you incorporating stories into the medical curriculum at U of T?

Dr. Arno Kumagai:
My work in the past at the University of Michigan was with first and second year students. But most of my work here is with post-graduates.

One of the important ways we incorporate stories is by dialogical teaching. We’re very interested in the power of dialogue to open perspectives and new ways of seeing. We train clinicians to use moments of dialogue in the clinical environment to stimulate reflection and storytelling.

We don’t pull people out of the clinical environment and give a lecture, we train faculty to ask questions as part of rounds, or on the fly.

BLOOM: I read a paper where you talked about the importance of creating space for medical students to talk and reflect about both ‘the tragedy and wonder’ of medicine. And that these spaces don’t involve a specific location, but are more like mental pauses that take place in the corner of a ward at any time of the day.

Dr. Arno Kumagai: Yes. As an educator, what is the one question I want to ask a student that will get her to think about the social or humanistic or social justice issues about a patient?

Let’s say an attending physician tells me: ‘I have a 34-year-old woman who’s a single mother of a young child and works downtown at a restaurant. She has type 2 diabetes and is non-compliant with her medicine.’

I would say: ‘What does non-compliant mean to you?’

‘She’s not following what we asked her to do.’

‘Well why?’

‘I don’t know.’

I would encourage the person to think about who this patient is, and what she does. She works in a restaurant and is a single mother. Restaurant workers in the U.S. don’t make enough money to afford insurance, but make too much money to be on public insurance. It’s likely this single mother has no insurance and her medicine costs her upwards of $300 to $400 a month. So it comes down to whether she feeds her kid or takes her medicine.

You want the experiential part of the student seeing the person in front of them tell a story about how they struggle. And for many it will trigger an empathic response of ‘Wait, something is not right about this, and I need to do something.’

BLOOM: You said there’s a distinction between a dialogue and a discussion.

Dr. Arno Kumagai: A discussion is more goal-oriented. It could be about a treatment or discharge plan, and there’s a solution at the end of the discussion.

A dialogue is very different. You bring in your whole self—your background, your values and experiences—and interact with someone in a way that may not result in a single solution. In fact, it may spark more questions or avenues to explore.

For example, if I’m an educator in the ward, I may want to tell a story to residents of an ethical dilemma I’ve run into, but not tell them the ending of the story.

You want to get them to really engage themselves and think deeply about what would they do? Their values, and the way they look at life, may be very individual, so they bring that all in and talk about it. You introduce stories and talk about paradoxes and ask ‘What would you do?’

I don’t want the attending physician to assume ‘I have the right answer.’

BLOOM: It sounds like you’re encouraging them to be able to think more flexibly.

Dr. Arno Kumagai: Health-care providers often assume there is one correct answer and they get it and give it to the patient. Instead of seeing that there are multiple voices constructing the truth through an exchange. That becomes a very different picture that is much more fair and democratic.

When I see a new patient as a diabetes specialist, I’m very cognizant that I need to engage in a dialogue with that person. One of the first questions I ask is ‘What is it that you do really well?’

Some are musicians or runners or video-game players or artists and they’ll start talking about that, and it gives me an idea of who they are and then we’ll talk about diabetes. I want to figure out their strengths, instead of their deficits, and build on them.

It’s an exploration, a partnership, a collaboration. We’re trying to figure out what works for them, with their input.

The answer will be different for different people. That’s why cookbook approaches in many ways don’t work.

That’s very different from thinking I’m the expert, and I have 45 minutes to figure out a solution.

BLOOM: So, in fact, the answer can’t be found by the doctor in isolation.

Dr. Arno Kumagai: No, it can’t. A monological approach is often how we think about medicine: doctors have the answers and patients come for the answers. You can sit in a room by yourself and use analytical skills that are often purely cognitive, and have wonderful thoughts. But that doesn’t involve an exchange with another person who has a background and history, and the doctor actually committing to engage his or her own background and history and perspectives.

I always tell patients that I know a lot about delivering insulin and the complications of diabetes and challenges of treating it. But I know virtually nothing about living with diabetes. And I’m not going to presume I do.

BLOOM: How can we ensure that practising doctors continue to create spaces to reflect on the human and ethical questions of medicine?

Dr. Arno Kumagai: That’s the million dollar question. This is nascent. We’ve been doing this with medical students and graduate students, but what about practising physicians, in terms of continuous professional development?

BLOOM: I was at a meeting here where you spoke about how the best learning is often sparked by the discomfort that a story produces.

Dr. Arno Kumagai: Some of the most effective learning happens when people are forced to question their own assumptions. They’re put into a position of discomfort that disturbs the patterns of assumptions they may hold of themselves and the world. People talk about this ‘stepping out of the comfort zone’ or ‘thinking out of the box.’ Conflicting emotion or experience forces us to think. Not all discomfort is a bad thing.

Dr. Kumagai was recently appointed as the first Dr. F. Marguerite Hill Chair in Humanism Education at Women’s College Hospital.

Tuesday, January 9, 2018

Share your mental health story on Bell Let's Talk day

By Louise Kinross

With Bell Let's Talk day coming up Jan. 31, I'm gathering comments from parents that BLOOM can post anonymously on social media that day.

What would you like the world to know about how raising a child with a disability in our culture affects your mental health?

More than a decade of research shows parents of children with a variety of disabilities have higher rates of depression and anxiety than other parents.

What are your mental health needs, struggles, hopes?

I'm looking for short comments that we can post anonymously on BLOOM and its social channels on January 31.

Leave a comment here or e-mail me at lkinross@hollandbloorview.ca. Thanks!

Wednesday, January 3, 2018

In dark times, reaching out

Our new A Family Like Mine video features a remarkable mother who wants to break the silence around mental illness.
Leomina Valderrama has two sons: Bryan, 22, and Brendell, 15. Since Brendell was born with cerebral palsy, seizures, and complex medical needs, Leomina has dedicated her life to his care. In recent years, her husband Gilberto struggled with depression. Leomina reached out to social worker Barbara Germon at Holland Bloorview to help her cope. Last April, her husband died of suicide. "My heart wants to reach out to those who are going through what I've been through personally," Leomina says. "There is help available when we don't stigmatize with the silence of mental illness, and raising a child with a disability is a challenge, but there is joy that comes with it." Here she talks about strategies to build her resilience as a single parent and move forward, as well as her fear of who will care for Brendell when she can't. Bryan talks about what he's learned from Brendell.

Thursday, December 21, 2017

A practical guide for parents of disabled children and their doctors

By Louise Kinross

Many of you followed Julie Keon on her blog. Julie just released a revised edition, with new content, of her book What I Would Tell You: One Mother's Adventure with Medical Fragility. The book covers all Julie has learned since her daughter Meredith was born with a severe brain injury 14 years ago. One of the best parts of the book, for me, was the chapter about befriending grief. Julie asked me to write a review, so I did:

What I Would Tell You is a candid, riveting account of what happens when you're told your precious newborn will not do any of the things you anticipated. Julie leads you through what to expect: how you might feel, how others might react and most importantly, what you can do to thrive and find meaning.

This book is packed with compassion, practical wisdom and life-affirming insights. It's a must-read for parents, family and friends. Anyone seeking courage and resilience in the face of catastrophic events will benefit from it. 

What I Would Tell You is an indispensable guide for doctors and nurses and others who work with children with medical fragility. It illuminates the kind of care that empowers and uplifts, and the kind of care that can break down and further traumatize.

Congratulations Julie! This book should be on medical school curriculums.

Tuesday, December 19, 2017

Amy Wright, founder of Bitty and Beau's, is CNN's hero of 2017

Two of Amy Wright's children have Down syndrome Beau, 12, and Bitty, 7.

In 2016, Amy opened Bitty and Beau's Coffee Shop in Wilmington, North Carolina. Knowing that most adults with intellectual disabilities don't have jobs, she wanted to show what people with the same disabilities as her kids could contribute. The shop now employs 40 staff with disabilities like Down syndrome, autism and cerebral palsy (watch Matt's story in the video above). The shop's tagline: More than a cup of coffee, is followed by messages like 'Changing the way people value other people.' The shop was so successful that a second location is opening in Charleston, South Carolina. All proceeds go to Able To Work USA.

Amy was named 2017 CNN Hero of the Year for her advocacy. The award is determined by online voters who chose Wright among the top 10 CNN Heroes finalists.

Monday, December 18, 2017

Talking to kids about weight: What works and what doesn't?

By Louise Kinross

Last month the American Academy of Pediatrics released a policy statement on how children with obesity are stigmatized, and how health professionals can help reduce that stigma when talking about weight.

This month, Holland Bloorview launched an interactive casebook on how to have positive conversations about weight and health with children, including those with disabilities. The book focuses on healthy lifestyles and is written for health professionals across disciplines

It brings together the latest research, video stories from clinicians and families, simulations and resources.

BLOOM interviewed Amy McPherson, a Holland Bloorview scientist who authored the casebook with knowledge translation specialist Christine Provvidenza and post-doctoral fellow Laura Hartman. A multi-disciplinary team also worked on the project and input came from experts across Canada.

BLOOM: In what way is weight an issue for children?

Amy McPherson:
One in three kids in Canada has overweight or obesity. Kids with disabilities are two to three times more likely than their peers to experience this.

BLOOM: Why do you say kids ‘have,’ as opposed to, ‘are’ overweight?

Amy McPherson:
It’s person-first language. We’re trying to get across that obesity is a disease, like diabetes, so something you have and not something you are. This is the language recommended by the Canadian Obesity Network.

BLOOM: What is a casebook?

Amy McPherson:
A casebook helps bridge the gap between what we know and what we do in health clinics. It combines research evidence, experience and resources in one place and provides practical clinical guidance to heath professionals who work with children.

BLOOM: Why is a casebook needed?

Amy McPherson: We know that health-care professionals who work with children report that they don’t feel confident having discussions about weight. They don’t feel like they have the training to bring up these issues. They’re often worried that they’ll ruin a therapeutic relationship they have with a child and family by offending parents and children, or will cause self-esteem issues in the child. That speaks to the weight bias in our society. Why would having a higher weight be any different than having blue eyes? We associate negativity with weight, and so we’re reluctant to mention it.

BLOOM: What should professionals know about higher weights?

Amy McPherson: One of the main messages in the book is that obesity is not a personal choice. It’s complex, and affected by many factors. It’s not a case of ‘eat less and exercise more.’ If it was that easy, no one would have obesity. Genetics influence weight, as does sleep and your metabolism and medication. When you lose weight, your body actively fights it.

We encourage professionals to talk about growth and health rather than weight and size. If they are tracking a child’s growth and they see a steep trajectory, that may be an opportunity to step in and talk about the impact of weight on health.

BLOOM: What are the key messages you want to get to professionals and families?

Amy McPherson: One is that before talking about weight-related topics with a child, ask for permission. First, make sure you’re in a private environment and the child feels comfortable. Ideally they will know the professional. If the child doesn’t want to talk about it, say ‘Okay, we’ll revisit it next time’ and ‘It’s always okay to come back and talk to me, or someone else, about it.’ We need to build rapport with families who might be sensitive about it.

BLOOM: What are other suggestions in the book?

Amy McPherson: To recognize the strengths of children and families and what they’re doing well. Almost anything can be made into a success, and can be used with the child and parents to motivate and engage them. Perhaps they made Tuesday a pop-free day. That’s awesome. Focus on solutions. Maybe they turned off the TV earlier than usual and played a game outside. Find where their strengths are.

BLOOM: How is the book different from reading a research paper?

Amy McPherson: We wanted to make it really practical so it could be used in everyday practice. To create the content, we held two workshops with researchers, clinicians, students, parents and youth. We wanted to make sure that people with different learning styles could benefit. So we include diagrams and videos. We have evidence-based research summaries in there but we break everything down. For example, we have six sentence starters for clinicians who don’t know how to bring up the topic. We have four simulations to spark conversation on what works and what doesn't. There’s a one-pager clinicians may want to stick on the wall.

BLOOM: I’m wondering if one of the reasons health workers don’t want to address weight is that there isn’t an easy answer in terms of treatment.

Amy McPherson: Weight management in all children has a low success rate. We haven’t worked out exactly how to do it with typically developing children. With children with disabilities, there are extra complexities. We need more research to offer recommendations on weight management. But if we can get professionals talking about being active and eating well for your health, and not make it about weight and a number on the scale, that may have benefits. We want to give the message that the whole family can get involved in moving more and feeling good about their bodies.

BLOOM: What are next steps?

Amy McPherson:
We’ve applied for Centre for Leadership funding at Holland Bloorview to do an implementation study. We’d like to work with a group of clinicians and trainees here to create a curriculum and a road map of ‘this is what you do to get this into your clinic.’ We would identify the gems that are immediately useful. We’d also like to target a number of clinics across Canada to look at the impact of using the casebook and whether it’s changing behaviour.