Why silence is golden after doctors express empathy

By Louise Kinross

Every day, doctors in children’s hospitals meet with parents to talk about life and death medical decisions. It may be whether to surgically create a hole in a child’s windpipe to place a breathing tube, whether to remove a life-sustaining ventilator, or whether to proceed with a high-risk medical procedures, such as a third bone marrow transplant.

Studies show that when families feel their emotions are heard and understood by doctors, they’re more likely to share information that’s critical to the best care.

But what features of a conversation effectively transmit a message of empathy?

A fascinating study in JAMA Network Open looked at the transcripts of 68 recorded care conferences about high-stakes medical decisions at Children’s National hospital in Washington, D.C.

Researchers wanted to evaluate how doctors communicated that they had heard and understood parents', or other family members', emotions.

“The biggest surprise was the 18-fold increase in moving the conversation along and getting more information on a family’s fears, hopes and values just by using ‘the pause’ after expressing empathy,” says lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children’s National.

While doctors in the study recognized and responded to emotion in families 74 per cent of the time, in almost 40 per cent of cases they didn’t then pause—giving families a chance to respond. Instead, they reverted to medical jargon.

“I always thought the pause was powerful, but I didn’t expect it to have that magnitude of effect,” Dr. October says. “It supports the thought process I had going into the study, which was that families who have their emotions responded to are more likely to share additional and new information. Language really does matter.”

To categorize empathetic words in the transcripts, researchers used the NURSE pneumonic on how to communicate with seriously ill patients and their families: naming the emotion, showing understanding, being respectful, giving support and exploring feelings.

Most often doctors did respond to emotional cues from families, but too often they immediately plunged back into clinical talk, followed their kind words with ‘but,’ or were interrupted by another doctor who provided more medical data.

BLOOM interviewed Dr. October about the study.

BLOOM: Why was there a need for this study?

Tessie October: I do both palliative- and critical-care medicine and I find that by straddling both, I have a unique understanding of the parent and family and their role in the care of their child. In the ICU, we don’t always respond to family’s emotions in the way families need to be supported. We know the families need medical information to make informed decisions, but we also know these are heavy, emotionally-laden decisions.

I find, anecdotally and in the literature, that we lean more heavily toward the medical information without the emotional support, and we need a better balance. In children’s hospitals, we do have other support folks like social workers or our palliative-care team or our chaplain, and physicians rely on them to provide the emotional support. But that’s not what our families want. Families want emotional support from their doctors.

BLOOM: How did you define empathy?

Tessie October: We defined it, looking at the Webster's dictionary, as being aware of the feelings and emotions of the families, and responding to that emotion with care and love and compassion.

BLOOM: What were the key findings?

Tessie October: The most important finding was that silence matters. Physicians in general are trying to be empathetic—they’re responding to the emotional cues of families—but they don’t realize that they’re sometimes burying that response in medical information, and when they bury an empathetic statement, families don’t hear it.

So giving an empathetic statement and pausing is what allows the family to hear. But more than that, after a pause, the family was more likely to talk about their worries, hopes and values, and these are the things we need to make some of these decisions. It wasn’t just that doctors responded and families felt better. It was that the pause moved the conversation along.

BLOOM: Your study notes that doctors sometimes linked a kind statement with ‘but,’ and this wasn’t helpful. Can you explain?

Tessie October: 'But' is a conjunction that indicates to the family that the next clause will contradict the previous one. So a doctor might say ‘Gosh, this must be really hard for you. I can’t imagine how hard this is—but—we do need to start making some decisions.’ Parents no longer hear the first part, and all they hear is: ‘You guys need to move this along.’

This happens pretty frequently. As much as doctors are trying to be compassionate, we have a purpose and an agenda in the meeting, and we want to get to it.

BLOOM: I assume that time pressures are a factor?

Tessie October: We’re trying to change the way we think about the family meeting. In my research on communication techniques and training, we find that when you slow down and do less of the talking, you get more information, and the meeting is shorter. You spend less time, you get less conflict, and you respond to the family’s emotions. As a result, they’re able to collect themselves and are ready to hear more information. Think about when you’re in an emotionally distraught state. Until you come down on the emotion, you can’t take in any information. Until you respond to family emotions, they can’t hear medical information properly.

BLOOM: Why do doctors often bury compassionate statements in medical talk?

Tessie October: It’s what’s most comfortable. It’s how we talk with each other, and how you’re evaluated in medicine. It’s the language that physicians know. It’s much harder to be in an emotional space and sit with a family in silence, or make statements that you know will hurt.

It’s harder to sit with a family that’s crying than to revert back to the stuff we’re comfortable with—talking about the kidney or lungs or other medical parts. It’s an avoidance behaviour that happens when you’re uncomfortable. We need to learn the skills that are necessary to respond to emotions, without feeling guilty. Having those tools in our tool box can be helpful.

BLOOM: How do we prepare doctors to do this emotional work? You note in the study that when a parent is distressed, it’s often difficult for doctors to pause after conveying empathy. Don’t they need coaching on how to do this?

Tessie October: This is the hard work we’re trying to do. We don’t get this anywhere in our critical-care training. In palliative-care training, we do spend a lot of time talking about emotions and how to connect with families. Our procedures in palliative care include responding to family’s emotions and navigating care conversations and meeting as a team. But for a lot of ICU doctors—and other doctors beyond that—this is not part of their training.

We don’t think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube. I’m trying to change the framework of how we think about these conversations. If you think about how we even evaluate people who are appropriate for medical school, it’s not about how they communicate with people. We’ve decided that technical skills and the science background is enough to be a good doctor.

What we’re finding is that doctors who have better relationships with families are doctors who are less likely to be sued, who find more meaning in their work, and who are less likely to burn out.

BLOOM: Don’t doctors also need to regularly express their own emotions to the work they do? We did a narrative group with our inpatient nurses here, and one of the findings was that prior to the group, nurses felt they were alone in experiencing work emotions like grief, regret and guilt. During the intervention they would say things like “I thought I was the only one.” We found they benefited from hearing other nurses tell similar stories to their own, which normalized their feelings.

Tessie October: We need to do more work that allows people to have a space to unpack these emotions that you describe in your narrative work. When we don’t do this emotional work with staff, we end up with burnout. There are some things hospitals are doing, like Schwartz Rounds. We also have debrief sessions with our chaplain after an emotionally challenging death of a child.

Part of it, truthfully, is that there’s a protective mechanism we invoke to be able to do the work we do. We try to stay a little bit distant. When a child dies, if you’re the ICU attending, you still have 40 other children who are expecting you to be on your game.

We need to normalize the fact that we have these emotions. Medical staff experience repeated work traumas. We need to make a safe environment for people to be able to emote, and talk about these things. It’s not institutionalized until every staff member has their own process that they can use to do this work. This is an area we need to address as a field.

BLOOM: What do you hope other intensive care units take from the study?

Tessie October: That conversation matters. And that sometimes just slowing down and pausing can make a real difference in the family’s ability to hear and understand the information you’re giving. The motivation may be to rush through certain things, and we have to remind ourselves that these are emotional, life-changing decisions. Responding to emotions is equal in importance to providing technical, medical information.

BLOOM: To some degree, isn’t empathy subjective? Isn’t it possible that one parent would find a statement helpful, and another parent might find it hollow? Was there thought given to studying which words and phrases parents find most compassionate?

Tessie October: That would be a very interesting study to do. We didn’t study that in particular. I think you’re right—some families respond to different words. Our goal is to increase the options that are in the doctors’ tool box, so if they try something and it doesn’t work, they can try something else. What I do in my meetings is I let the family talk. I let them start the meeting and get off their chest what they’re really worried about and, and based on the language they use, they give me a lot of clues.

It’s being present, and being aware, and listening to those clues. One thing we want to do is help doctors recognize statements as emotional. For example, if a family says “There’s got to be something more you can do,” I’m trying to help staff hear that as an emotional statement, instead of as a cognitive statement.

Often, the family is not asking ‘What’s the next phase 1 therapy available for my child?’ They’re saying ‘I can’t believe we’re at this place. I can’t imagine that we don’t have any other treatment for my child.’

BLOOM: Yes, it sounds like the parent is feeling powerless to protect their child. Was any thought given to connecting parents who are going through similar situations? In one of the statements listed in your study, a doctor says ‘I completely understand.’ But how is that possible, unless they’ve had a child in the same situation? I’m wondering if other parents—or a parent in a staff role—could provide additional support?

Tessie October: I don’t know that that’s been tested. I know some hospitals are testing parent navigators, where a parent is on staff to provide continuity for families. Part of the problem is that parents often participate in meetings with different providers who give them different messages. A lot of times these meetings happen impromptu. We do offer to have families speak to other families going through similar things, especially around heavy decisions such as tracheotomy placement. We’ve also created resources in terms of videos that are parents talking to parents.

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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.”

Shaftesbury, 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. 

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This and that, including autism and siblings

Photo by Alia Youssef

By Louise Kinross 

Beyond the Spectrum is a brilliant film about a Canadian mom and dad who take a year off to do therapy with their son Oskar (photo above) who's diagnosed with severe autism at age 2. The full feature film is available at the link above at TVO. I'm interviewing Oskar's mother Carly Harnadek tomorrow!  Stay tuned.

Last Sunday I attended an awards dinner to celebrate Dr. Peter Rosenbaum, Holland Bloorview's former chief of medical staff and co-founder of CanChild at McMaster University. He was receiving the Carmel Award of Merit from the Canadian Friends of Haifa University in Israel. In accepting the award, Peter said: "The work we do in childhood disability is, and must be, situated in the much larger canvas of human experience. This encourages us to see disability and difference not as categories of existence separated from normal and typical (as we have been taught) but as part of diversity." Peter was recognized for his lifetime work in pediatric disability research.

While at Peter's award ceremony, my husband and I noticed a well-thumbed book sitting on a cocktail table: Shtum. We were intrigued because its cover mentioned something about a boy who was non-verbal. I hadn't heard of this book, but it's a novel based on author Jem Lester's experiencing raising a child with severe autism, and has received rave reviews. Has anyone read it?

I'm always buoyed by accounts of Neanderthals who supported people with disabilities. This is an interesting piece about the analysis of a 50,000 year old Neanderthal skull that revealed that the man, who died in his '40s, had a number of physical disabilities and was profoundly deaf. "More than his loss of a forearm, bad limp and other injuries, his deafness would have made him easy prey for the ubiquitous carnivores in his environment and dependent on other members of his social group for survival," said anthropologist Erik Trinkaus.   

And finally, yesterday I received a comment on a BLOOM story from an adult sibling. In response to "Should kids be asked to care for a disabled sibling?, published in 2012, Gen wrote:
 
"Thank you for this article. This also reflects my experience being the eldest female child of a small family with a sibling who has an intellectual disability. My parents really struggled when we were children and from a very young age I was told I had to lift the load. I was a little parent. I learnt early on that my parents couldn't cope with any bad behavior or negativity from me and so I became a perfect child, bottling in my feelings and needs in service of my family. It's not my sibling or my parents' fault.

"I don't think this article is looking to blame parents or make them feel worse. It's simply encouraging a bit of thought and planning to see if there are other alternatives that could help give parents respite so that siblings can go through the normal stages of growing up. From experience, growing up too young and being a carer so early has left me socially isolated as I wasn't able to invest time in friendships. Bottling in my emotions caused physical, mental and relationship difficulties that have taken half of my adult life to resolve. This may seem extreme but take something useful away from this article. I have seen many parents in denial about their children's well-being simply because they felt attacked or embarrassed."

I wish I had some words of wisdom to share about how to ensure your other children get the support they need. Of course we've done stories like this one on the topic of understanding how brothers and sisters may feel, and practical strategies for parents, but I know it's a complex issue for many families.

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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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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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Asha 'reshaped the way I look at the world'

By Louise Kinross

I heard this amazing interview with Ron Buliung, a professor in transportation geography at the University of Toronto Mississauga. He’s collecting data on a research project that looks at how children who use wheelchairs and walkers—and their parents—view accessibility at home and on the child’s trip to school each day. The project grew out of Ron's family's experience trying to make their front yard accessible for daughter Asha, 5, who drives an electric wheelchair. BLOOM talked with Ron about how his personal and professional life came together after his daughter was born with spinal muscular atrophy (SMA) type 2, a degenerative condition that affects the muscles.

BLOOM: Tell us a bit about Asha.

Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.

BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.

Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.

Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.

BLOOM: What’s she like as a kid?

Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.

BLOOM: What does she like?

Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.

BLOOM: Does she have fine-motor issues?

Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.

What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.

BLOOM: Is her school accessible?

Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.

She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.

BLOOM: What’s been the most challenging part of raising Asha?

Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.

BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?

Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.

BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.

Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.

I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.

When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.

BLOOM: How did you move forward from those early days stuck in grief?

Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’

Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.

Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.

BLOOM: What do you do to help cope with that stress?

Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.

BLOOM: Do you bike to work?

Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.

BLOOM: So you’re biking two hours a day?

Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.

BLOOM: Is there anything you’d recommend for parent mental health?

Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.

In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!

In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.

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

Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?

While we’re waiting for a cure, having more support available.

BLOOM: Like with night nursing?

Ron Buliung: Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.

BLOOM: What’s the research you’re doing now related to accessibility?

Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.

One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.

BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.

Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.

I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.

BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.

Ron Buliung: I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.

Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.

In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.

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'A good clown is a mask that reveals'

By Louise Kinross

Helen Donnelly is Holland Bloorview’s Dr. Flap—a therapeutic clown in a trademark aviator hat with goggles, a white medical coat and a red nose.

Her title is therapeutic clown, but she says “therapeutic clown practitioner” is more fitting. “Dr. Flap is the therapeutic clown,” she says. “The practitioner is the clinician under the nose.” Helen came to Holland Bloorview in 2007 to join Ricky, the clown we knew as Jamie Burnett, who has since died.

This is how I described the pair in 2012: “No matter which room they were in, or whether the child could speak or move, the duo would create a kind of magic that bounced like a ball between the clowns and the child and the child and the clowns. Sometimes the magic moved back and forth through the blinks of the eyes alone, sometimes through silly body movements and sounds. Sometimes it was a child conducting the taps of drum brushes on a wheelchair tray or commanding the clowns to perform outlandish antics. Sometimes it was an elaborate story the child told and the clowns acted out. Other times it was a dance to the strums of a red ukulele.”

In 2010, researchers here published a study that showed that even children who can’t move or communicate verbally respond to our therapeutic clowns with changes in skin temperature, sweat level and heart and breathing rate.

BLOOM interviewed Helen as she was about to do a 24 Hour Uke-A-Thon to raise funds for our therapeutic clown program, which is completely funded through donations. In the photo above she appears with Manuel Rodriguez, who is Nurse Polo.

BLOOM: What led you into this field?

Helen Donnelly: I was a clown with Cirque de Soleil and was building my own shows in theatres. A colleague of mine at SickKids encouraged me to audition for a position there, but I resisted. I kept thinking there’s no way I could handle the sadness and the grief. How do you clown through grief and how could I possibly find my joy in a place where people are anxious and fatigued and in pain? I didn’t think I could handle it.

Two years later another position came up and this time I found myself intrigued and not saying no. I auditioned in the atrium at SickKids and my heart just leapt and I said ‘This is what I’m built to do as well.’ The similarities between circus and theatre as a clown, and being in a health care setting as a clown, all came together.

BLOOM: How did you end up at Holland Bloorview?

Helen Donnelly: My experience at SickKids was fruitful in that I learned an awful lot about how to clown in the medical world. But the structure of being a clown working solo was very challenging. I found working alone on a unit was emotionally and physically fatiguing and there wasn’t the kind of rigorous artistic support that I was used to. Then Jamie contacted me from Holland Bloorview and said he was looking for a partner. He wanted to mirror global best practices of having the duo model of clown in hospital.

BLOOM: What are the benefits of two clowns working together?

Helen Donnelly: Having worked both ways, there are so many benefits to the duo. There's the emotional support. And having a partner who can constantly witness and feed back about the work ensures a greater degree of safety for clients and high artistic standards.

Working in a duo is inherently more ‘artistic’ in nature. It sets us up to be partners, rivals, teacher-student, or both ‘in trouble,’ according to the child’s imagination. Having two clowns means many more choices for the clients. And kids are smart and instinctively know what to do with two contrasting 'fools!'

You can imagine if you’re a 17-year-old who is resentful, refusing therapies and fighting depression, the last thing you want is a single clown knocking on your door, asking permission to come in.

We feel a better way is to have two clowns having a 'heated argument,' let's say, just outside the door, and to have one of the clowns turn to the client and say ‘Excuse me, do you mind? We’re in the middle of something here, so this is none of your beeswax anyway.’ You’re trying to assess if there’s a crack there—a way in to something this teen might delight in.

Not all clients want to be interacting one-on-one, or at all. When you have two clowns you have so many more options. You can have one clown side with the child against the other clown. Or have the child be our boss and tell us what to do. Or you can have the child and two clowns playfully correct the parent or clinician. With the duo clown model we offer that choice of collaborating or being a passive observer.

BLOOM: What's a typical day like now?

Helen Donnelly: I work three days a week with Suzette Araujo, who is Nurse Flutter. Manuel Rodriguez, who is Nurse Polo, comes in if one of us is absent.

We check in, and we might go to inter-professional rounds or meet with child life specialists, in addition to looking up all of the clients we’re about to see on the electronic medical record. That helps us prioritize our client list. We spend one day a week on each unit from about 1:30 to 5 p.m.

BLOOM: What do you do?

Helen Donnelly: There are three main purposes. One is to seek out opportunities for kids and youth to feel powerful. It could be a baby who makes eye contact with us and we see him as our lawyer—which might tickle the parent, because we’re elevating the status of this baby high above us. We seek opportunities for youth to manipulate us in any way they wish—to outsmart us or to correct us.

BLOOM: Why is it important for kids to feel powerful in hospital?

Helen Donnelly: Clients feel a lot of their choices are taken from them. They’re missing a lot of the pieces that define who they are. We want them to feel most authentically like themselves again, and to be in control again.

BLOOM: What are the other purposes?

Helen Donnelly: The second is to collaborate with our fellow clinicians during a medical procedure or during therapy sessions.

BLOOM: Why is that helpful?

Helen Donnelly: The procedure may be frightening or painful and we have diversion techniques we can adopt, where we see immediate results.

BLOOM: Can you give an example?

Helen Donnelly: If there’s a wound change, which can take quite a while, we might employ physical comedy. We might get stuck inside the child’s bathroom and can’t find our way out, so we’re pleading at the door for the child to help us get out. Or maybe the kid, with a wave of an arm, can freeze us and we’re frozen, and then they can wave again and we’re brought back to life. It’s like visual candy, and it’s all housed in a comedic framework which can take us to some wonderfully dark places. It’s not always about frivolity.

There can be a lot of therapeutic merit in getting youth to release some of the darker feelings they might have. Because we’re artists, we have many skills in our back-pocket. We can make a rock opera out of their feelings. We’re musical by nature, and we’re skilled in the art of improvisation. We're flexible and can go where they want to lead us, fearlessly and with joy. 

The great thing about clowns is we’re playful rule-breakers, we’re not beholden to society’s norms. Kids and teens instinctively understand what that looks like and how to use their clowns. It’s only when we become adults that we forget.

BLOOM: What is the other purpose?

Helen Donnelly: A philosophical aim is to seek out ways to change the atmosphere of the entire unit. So, how can we lift the spirits of our fellow clinicians and give them the kind of encouragement and praise that they always deserve? We may make up songs for clinicians. ‘Hang in there’ seems to be quite popular these days.

I’ve been criticized by a few therapeutic clown programs around the world for spending what they perceive is too much time on our clinicians. That’s baffling when you consider that you can make a difference within one minute. Good care trickles down, and if you look after the caregivers, it benefits everyone. They are the unsung heroes here and, as servants, our job is to highlight where those heroes are.

A very important part of our day is when we debrief and reflect on the interventions at the end of the day. We pick apart what worked, what didn’t and why, and come up with a plan for next time.

The remaining half hour is documentation. We’re the only clowns in the world to electronically document every intervention in the permanent health care records of our clients. Lots of clowns document, but not electronically. The benefit is that clinicians can check in on our notes: ‘Oh, does Johnny like clowns? Oh, wow, it says he’s musical.’ So they’re learning aspects about their clients that they can use.

BLOOM: Who is Dr. Flap?

Helen Donnelly: Dr. Flap is a flight doctor from the fictitious island of Tubegosh, which is in the Atlantic, Pacific, Mediterranean area.

BLOOM: That’s a lot to wrap your head around.

Helen Donnelly: Ha! Oh, and Dr. Flap is regularly regarded as genderless, so often goes by the pronoun ‘they’ or ‘their.’

BLOOM: Why is that important?

Helen Donnelly: There’s a tradition among some indigenous cultures in which the fool in that society is gender-fluid. This is something that always appealed to me when it comes to offering choices to our audience. I can’t tell you how much joy we get every time a client decides Dr. Flap is male—and what a wonderful thing it is when the parent does not correct their child! In this way, clown can symbolize fluidity in many things—that moods can change, a person’s health can change, our gender can change. Anything is possible.

BLOOM: Cool. What happens inside you when you put on your costume?

Helen Donnelly: We like to call them clown outfits or clown skins, because the clown is a huge aspect of our authentic self. When the nose goes on, for me, it’s a transformation through Helen, and up and out into a freer version of myself. I’m not losing anything I am. I’m not denying my own function or moods, but I’m giving myself freedom to express them in a much more artistic fashion.

Dr. Flap is a better or bigger version of Helen. This transformation inherently gives the clown artist a lot of energy and resiliency. As Helen, I am devastated to learn about some of the things that occur in this hospital. But as Dr. Flap, I’ve been able to withstand so much hardship and witness so much pain.

There’s something about the nose that keeps you focused on what’s really going on, and what you perceive is needed in the moment. It’s the least selfish you can ever be. It’s truly putting yourself in that 'servant’s heart' frame of mind. It frees you up from being in your head or in your worries. You find a lightness. It’s because you’re giving yourself permission to be in this lighter self that you can hone in on what’s needed in the moment.

BLOOM: What do you love about the work?

Helen Donnelly: It’s the opportunity to offer my art and all that I am in a system that I love, and one that is totally different than the one I perform in otherwise. I’ve always been around healthcare and I’m comfortable here. I was a kid in health care myself, and I was a candy striper in the ‘80s.

BLOOM: You were a patient?

Helen Donnelly: I was bitten by a dog when I was five and I had to have several surgeries to reconstruct my cheek.

BLOOM: I didn’t know you had that experience. What was it like for you in hospital?

Helen Donnelly: It was amazing. I remember my doctor’s name and my roommate was 16. She was there for an appendix operation. There was a big doll house in our room and she and I would play doll house for hours. I got presents from my parents and friends.

BLOOM: Was the surgery painful?

Helen Donnelly: I don’t remember the pain from there. What I do remember is the aftermath—the reintegration back into school.

BLOOM: How long were you hospitalized?

Helen Donnelly: I think it was a couple of weeks, and I had several surgeries over several years. But the emotional pain was so much worse. It took me a long time to heal, and I had to constantly wear bandages and put on special cream. Kids aren’t the most delicate of beings. So I was called a monster and I was the kid in the playground you’d feel sorry for—the one holding the teacher’s hand at recess because no one wanted to play with me.

BLOOM: Was this at the beginning of kindergarten?

Helen Donnelly: Yes. My socialization was halted for a long time. I found it difficult to connect with people and make friends. Everyone stayed away from me. On the good side, I had a remarkably imaginative life and we lived rurally, in the country. So it was natural that I would connect to the fairies in the forest, and build whole worlds, and become different entities. And that’s what led me to theatre.

BLOOM: You were talking about what you loved about working here.

Helen Donnelly: It’s the opportunity to have my dreams realized, and to carry on Jamie’s legacy. That is a huge motivator for getting out of bed every day. When Jamie was declining, I promised him that I would continue to do two things: the first was to ensure that our program is secure and safe, and the second was to build a school for therapeutic clown. I feel so fortunate to have arrived at Holland Bloorview, in a place that wants those two things to happen just as strongly as I do.

BLOOM: What is the certification?

Helen Donnelly: I’m building a certification for therapeutic clown that will be the first of its kind in North America. I’m building it through George Brown College, in partnership with Holland Bloorview. We need to have formalized training with proper supervision and evaluation.

BLOOM: Amazing! If you could change one thing in health care, what would it be?

Helen Donnelly: Time constraints. I’d love it if there were five of me.

Also, part of the biggest joy I have is finding a partner who deeply contrasts with me. But that can also be a challenge at times.

BLOOM: Why do the clowns need to be so different?

Helen Donnelly: Contrast is the essence of comedy. It’s just not true that you can have two similar clowns that can bring about the kind of comedic effect that two very opposite personas can. Because my clown partners contrast so deeply with me, it only makes sense that as humans we would have less in common with each other. So, you might get a type A personality, like me, working with co-horts who are type B personalities. That can be a challenge for all of us at times. I often secretly feel sorry for my partners!

BLOOM: Because you are such different people. How do you manage the emotions that come with the job?

Helen Donnelly: We take self-care extremely seriously. We’re the kidney of the hospital: filtering everyone else’s emotions, as well as our own, is the art of the clown. One of the benefits of the duo-ship is we dedicate time to sharing our feelings with each other. You have someone right there who’s witnessed the work. At the end of the day, we share how it felt and what we need from each other. 

We make sure to give ourselves a break if we’ve had a difficult intervention. Six times a year, outside of clown hours, we meet with a psychotherapist for two-and-a-half hours of dedicated time, to talk about the effect of all of the filtering we do. We have to be healthy, happy, centred and grounded

BLOOM: Do you have advice for other clinicians about the emotional side of the work?

Helen Donnelly: What’s helpful for me is to do practical things to help me refocus on where I’m needed most. It may be as simple as saying ‘I’m feeling this way, but that’s just a feeling in the moment.’ Then I look at how I can be a servant in this time, instead of worrying about how it’s affecting me.

But we never deny what we’re feeling. Clowns are the ones that can name the elephant in the room and get away with it. Other clinicians may find this helpful, too. 

Instead of deflecting or diverting from what’s happening, it may be interesting to name it—express that you’ve noticed that something is going on with your client. Chances are, they want to express it, and are trying to find a way to tell you. We can all help them by agreeing that something is being felt, and something is being 'tasted' in the room.

If a client shares something that is absolutely sad or tragic, for us it would be disrespectful and untruthful to not let that affect us authentically. It’s important to them to see the effect of their news on their clowns. It builds trust, and we need to feel what they’re going through, to serve them well. 

We’re not afraid of emotions and we need to express all of it to be the most human we can be. Ironically, through the filter and the mystery of the clown—this masked being— we’re able to find the most truthful way of being.

BLOOM: It reminds me of a narrative nursing group we did here, where the stories that staff shared unmasked their vulnerability, and how freeing that was.

Helen Donnelly: A good clown is a mask that reveals, and instinctively, everyone knows that. If you’re truly willing to reveal yourself, it gives others permission to reveal themselves, to share where we’re at, what we’re feeling and what’s important.

BLOOM: How long did you work with Ricky?

Helen Donnelly: Just over three years.

BLOOM: He was so loved here. How did you carry on after he became sick and died?

Helen Donnelly: It was the hardest thing I’ve ever had to go through. I did take some time off, and when I came back, I allowed myself lots and lots of breaks. My big hope was to find a way to balance the joy of being back with the grief that I was still carrying, and I have to say that the clinicians and clients got me through it. I could tell you so many stories about how clients wouldn’t let me off the hook about my grief, and they did it in such great, creative ways.

BLOOM: You mentioned that some of the families had asked that you not disclose to their child that Jamie had died.

Helen Donnelly: Yes. That was an almost impossible situation. Sometimes one child in the room could be told, and another couldn’t.

BLOOM: I guess the thought was that it was family-centred to allow parents to make that choice? But on the other hand, it seems to somehow minimize or erase what happened.

Helen Donnelly: I think the system can afford to really examine how we grieve here, and how we celebrate the memories of people who died here.

BLOOM: So how did you respond to children who couldn’t know the truth?

Helen Donnelly: I had to be really creative, while still honouring what my truth was. So often if it was a client who really wanted to know, but I wasn’t permitted to tell them, I might say: ‘I’ve been looking for him, too. I miss him too. Tell me what you miss about him.’ And then we’d talk about him and honour him and honour what we miss the most.

I knew going through this whole ordeal that it was inevitable that I needed to find a new clown partner, and I found the perfect partner in Manuel. He was like a bright light streaking across the universe. The type of joy that is central to his being was exactly what I needed. He is my rock. He was so different from Ricky, yet that lightness and innocence was so similar. Manuel was able to fill those big shoes with such grace and an immense sense of openness and willingness, and people picked up on it. I leaned heavily on it.

BLOOM: You work with many children who are non-verbal and have very complex disabilities. What have you learned from them?

Helen Donnelly: The joy of connecting with them and meeting them where they’re at, and the joy of investigating inventive new ways to elicit a collaboration or a communication. I believe that our observational skills have skyrocketed because of them. 

Engaging with kids who communicate in alternative ways inherently demands a sensitivity and inventive approach that you otherwise wouldn’t adopt. It’s a much richer experience, and the techniques we adopt with the more complex kids are ones we use with verbal kids all the time. Things like mirroring or use of mime or contrasting pitch.

BLOOM: So does working with children who can’t communicate conventionally allow you to hone these skills?

Helen Donnelly: It’s almost like specialized training. I’m a better clown because of it.

BLOOM: Have your thoughts about disability changed since you first came here?

Helen Donnelly: When I first came, like a lot of people who happen to be able-bodied, I couldn’t help but feel emotions like pity and sadness, and sometimes frustration. I’m not saying those things have been completely wiped out—that’s not true. I’m saying that I’ve grown to really appreciate how capable kids are of expressing their needs and moods and how much joy there is to be had just sharing our time together. 

Seeing how these children’s lives are being celebrated by everyone—not just by the parents or the clowns, but by all clinicians—and seeing the affect they have on everyone, it gives you hope that society can learn from how they live their days and what they choose to do.

BLOOM: Do you mean that in seeing how people’s ways of thinking change inside these walls, that perhaps we can expect similar social change outside?

Helen Donnelly: We’re a kinder society in here. But the winds are changing and shifting and that gives me hope.

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A sister's story fuels this scientist

By Louise Kinross

Krissy Doyle-Thomas is a neuroscientist at Holland Bloorview. She's studying whether a brain-imaging tool that detects blood oxygen levels can identify pain in children with autism who use little or no speech. CBC profiled Krissy during Black History Month as one of 150 black women who have made a place in Canadian history for excellence in their field.

BLOOM: What led you into children’s rehab?

Krissy Doyle-Thomas: For me it was out of a need. My younger sister Eddie-Marie was born at seven months and there were some complications: she wasn't getting all of the oxygen she needed. She was diagnosed with global developmental delay when she was very young.

We were a young immigrant family trying to navigate how to get help for her. We were in and out of SickKids for a very long time, meeting with specialists to address her medical needs in addition to trying to understand her global delay. The lack of answers my parents had about how to best support her really impacted our family. 

I was connected to the frustrations and stresses my parents were feeling and that started my desire to learn more, and to be someone who has that kind of information to share. I initially wanted to become a medical doctor. But then I went to school for psychology and I discovered the brain during one of my courses and I said 'This is what I want to do.'

BLOOM: Some people look at the brain and don't want anything to do with it!

Krissy Doyle-Thomas: I'm intrigued by the mystery of it. The fact that one organ controls everything we do. Of course we have other vital organs, like the heart. But the way our understanding of self and the way in which we operate sits in that one place, for me that is intriguing. I wanted to learn about the thing that makes me most like myself. And then when things go wrong, how can we address that? My passion is on the research side. I'm passionate about using the information I have to help find solutions for treatment, and also to educate people about the brain and the disorders I study.

BLOOM: How is your sister doing now?

Krissy Doyle-Thomas: She's fantastic. She's grown into a very independent, mature woman. She's married and has a little girl. She's got a knack for computers. My dad is an accountant and she supports his business. She knows how to handle data. She's developed a life that is who she wants to be. But growing up she had a hard time comparing herself to her sisters, who are all now senior executives in the business world, or me, with my PhD. When she let go of that, she really blossomed in her own way.

What I learned was how we view success is a personal thing, it's individualized. When my parents finally came to terms with the fact that Eddie doesn't need to fit into the same mould that their other daughters do, that allowed Eddie to be who she really is. To accept herself and the 'wonderfulness' that she is.

BLOOM: Can you describe your research?

Krissy Doyle-Thomas: We're using a new brain imaging tool that is portable and inexpensive and allows us to image the brain and see changes in blood flow in response to a task or state. When neurons are active they require oxygen and blood flow goes quickly to the active areas. As oxygen is released the signal changes and we can see where in the brain is active. 

We want to see if this can pick up the pain response in kids who have autism and are non-verbal. Our clinical partners see these kids in our psychopharmacology clinic. They're referred for aggression and irritability, but we don't really know what might be driving this behavioural response. Often times later on the clinicians discover medical conditions that are very painful. We're trying to create a tool that could be used in the clinic to help identify kids who may be experiencing pain and can't tell us.

BLOOM: What's challenging about the work?

Krissy Doyle-Thomas: Understanding the cortical pain response in itself is a challenge, in the absence of emotion. How are we going to think about pain when physical and emotional pain may happen in tandem? A lot of times both need to be treated. We want to know if we can get a reliable signal that will warrant medical intervention.

BLOOM: Why did you choose to study autism?

Krissy Doyle-Thomas: I really wanted to study global developmental delay, but when I was in school there weren't many researchers looking at that. I thought autism is another developmental disorder, if I start there, perhaps I can learn generalizable skills. Then when I'm an independent researcher, I can branch out. My end goal is to make my way back to studying global developmental delay.

BLOOM: What do you love about your research?

Krissy Doyle-Thomas: I love that it provides answers to families, not definitive answers, but more information that helps families understand the brain and autism and will eventually be translated into care and treatment.

BLOOM: Autism is a controversial area because many autistic adults are opposed to the idea of cure and want others to value their way of thinking.

Krissy Doyle-Thomas: I agree with them. It goes back to how I feel about my sister. When a person figures out their identity, we embrace that. If someone wants to embrace their autism as who they are, we need to be respectful of that. And if someone wants to treat their autism, we have to respect that. It needs to be individualized.

BLOOM: You were talking about what you love about your job.

Krissy Doyle-Thomas: I meet really cool kids and they're all so different and I appreciate that. I think diversity is very important. You meet all kinds of people with different abilities, ethnic backgrounds, genders. Everyone brings something to the table. You learn so much about being a human being by walking in the halls here. That's what I love about being in an academic health centre. It helps me to have a new outlook on life—be who you are, and let others embrace that. 

BLOOM: There's a lot of literature on how having a sibling with a disability affects kids. While some is very positive, other research shows brothers and sisters can find the complexities that disability adds to a family to be challenging.

Krissy Doyle-Thomas: I did find it challenging, yes. I always wanted to help, and when we couldn't find answers for my sister, I felt frustrated. She didn't always have the insight to know she was different, she just knew she was being bullied. My parents tried to put these protective parameters around her and she pushed against that. We didn't understand global developmental delay and what she could or couldn't do, and she wanted that independence. It was hard for her to understand why she couldn't do the things we were doing.

BLOOM: There's a group at York University doing research on the barriers facing immigrant moms of children with developmental disabilities. You mentioned you were an immigrant family. 

Krissy Doyle-Thomas: We moved from Trinidad to Toronto when I was nine and my sister was two.

BLOOM: This York group held a workshop here and the diversity in the room was unbelievable. There were a number of support groups that I had never heard of: a group for Muslim moms raising children with disabilities and another for Chinese moms and another for Somali moms. There were also lots of service providers from outside Holland Bloorview. But there were only a handful of our staff there. They were talking about how challenging it is to get the services your child needs when you don't speak the language or don't understand how to advocate in this culture.

Krissy Doyle-Thomas: We spoke English, so that wasn't an issue for our family, it was more not knowing what the best treatment was and how to get it.

But there was a situation recently that opened my eyes in this area. When the CBC story on black women came out, we did a series of photoshoots in groups of about 30 to 50 women. We all shared about what we did, and when the others found out I was a neuroscientist, they had so many questions about their own kids and other family members. Some had been diagnosed with autism or had a concussion or something else. They kept saying 'You have the answers our community needs to hear.'

It made me realize we have to go out into the community, instead of saying 'come to us.' Keeping information within the four walls of my workplace is not what my community needs. Information can be received in a different way if the person giving it understands where you're coming from culturally. So the families say 'Okay, I get this, they're speaking my language, in more ways than one.'

BLOOM: Have your thoughts on disability changed since you came here?

Krissy Doyle-Thomas: Definitely. It's about appreciating people for who they are and not holding anyone up against any one measuring stick. It's about embracing the person and allowing that person to shine for who they are, without biases, or without them having to fit into a mould. This organization opened my eyes to that. It wasn't an aha moment. But the culture here has become my culture, and changed my outlook.

Krissy Doyle-Thomas's research is funded by Holland Bloorview's Centre for Innovation.

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Rude words from doctors and parents harm care

By Louise Kinross

In 2015, a team of Israeli researchers studied the impact of rude comments by another doctor on medical teams while they did a simulation of caring for a very sick premature baby.

The words, from an expert the participants were told was observing them, included that he was “not impressed with the quality of medicine in Israel” and that medical staff in Israel “wouldn’t last a week” in his NICU in the United States.

Twenty-four NICU teams participated and teams were randomly assigned to hear the expert’s rude comments or to hear his neutral comments. The teams that experienced the rude comments scored less well in their diagnosis of the baby’s problems and in how they performed tasks like resuscitation and asking for the right lab tests. They were rated by two judges. “Rudeness exposure [by a medical superior] can adversely affect the cognitive functions required for effective diagnostic and medical procedural performance,” the researchers conclude, and may be a source of devastating medical error.

In a new study published in Pediatrics this month, the same scientists look at what happens when an actress, playing the role of the baby’s parent in a simulation, belittles the medical team. In this study, four Israeli medical teams performed five emergency scenarios. Three of the teams were confronted by a mother who accused them of misdiagnosing her child, threatened to move the child to another hospital, and said: ‘I knew we should have gone to a better hospital where they don’t practice Third World medicine!’ The control team was not exposed to rudeness.

Two teams were given a preventative intervention—one was a cognitive bias-changing game and the other a therapeutic writing exercise. The 20-minute computer game before the simulation showed angry and happy faces and provided feedback that made them less sensitive to negative emotions. The writing exercise involved having one team write about the rude event after it happened. The teams that experienced the rude comments from the mother scored less well on how they diagnosed the baby and intervened, as well as how their team shared information and workload. The researchers showed that the pre-simulation computer game reduced these negative effects on care, while the post-intervention writing exercise was ineffective.

BLOOM interviewed lead investigator Dr. Arik Riskin, a neonatologist at Bnai-Zion Medical Center in Haifa, Israel, by e-mail to learn more.

BLOOM: Why was the study about parent rudeness needed?

Arik Riskin: The study is important because it increases awareness that there are many factors related to human behaviour, relations and communication between [health workers] and between them and their patients or families. We are not robots, we are human beings with feelings, and we react to social situations and behaviours as do other humans. But, in the case of [health workers], the impact can be devastating, because we are dealing with patients, treatments and life-and-death decisions. The remedy starts from awareness and recognition that there may be a problem with this issue. Awareness is important for us as medical team members, but it’s also important to our patients and their families and to healthcare management authorities dealing with ways to decrease medical errors and improve care and patient safety.

BLOOM: How did you define rude behaviour?

Arik Riskin: Rudeness is defined as insensitive or disrespectful behaviour enacted by a person that displays a lack of regard for others. Rudeness should be regarded as a form of uncivil behaviour. Workplace rudeness may include insulting comments, denigration of a person’s work, spreading false rumours, social isolation and bad manners.  Rudeness, particularly with respect to speech, is necessarily confrontational at its core. What constitutes rude speech depends on the culture, the setting and the speaker’s social position in the culture. Rudeness is primarily concerned with violations of human dignity or respect.

BLOOM: What are common causes of rude parent behaviour in the NICU?

Arik Riskin: I would pay a fortune to find out the answer to this question. However, I’ll share with you some of our insights from our experience. Many times rude behaviour is a late response to an incident or some stress (and the NICU experience is very stressful) that the parents experienced before, sometimes even a few days or hours before.

The rudeness is not necessarily turned toward the [health worker] that was involved in that previous incident, and may be unrelated to the parent's infant or to the NICU or hospital. It can be some argument between the parents or in their larger family.

However, when it hits the physician or nurse out of the blue, they start thinking ‘What have I done wrong?’ This starts the process of rumination—thinking over and over ‘Why did I get this insult?,’ drains their cognitive resources and eventually can affect their ability to treat patients.

BLOOM: What were the main findings on rude parent behaviour?

Arik Riskin: Rudeness has robust, deleterious effects on the performance of medical teams.  Moreover, exposure to rudeness debilitated the [collaboration] recognized as essential for patient care and safety.

BLOOM: How does rudeness impair a medical team’s ability to provide good care?

Arik Riskin: Teams exposed to mild rudeness by the patient’s mother had diminished team performance with respect to outcome parameters relating to diagnosis and intervention, and process parameters including team information and workload sharing. These findings not only replicate our earlier findings demonstrating the [negative] effects of rudeness expressed by a senior colleague on individual medical performance, but extend them by demonstrating that similar effects are elicited by rudeness from other sources and are manifested at the team level.

In this study, we also demonstrated that these deleterious effects of rudeness are not restricted to individuals, but also to teams. This is important because—based on the assumption that teams can often overcome and compensate for individual performance limitations—medical work is increasingly structured around teams. Our findings demonstrate that when rudeness is present, the very collaborative processes that generally enable teams to outperform individuals may break down.

To the extent that rudeness impedes team helping and workload sharing, teams may not be able to deliver the heightened level of patient care that practitioners have come to expect from them.

BLOOM: Why was the computer game some teams played effective in reducing the negative effects of rudeness, while the writing exercise others did wasn’t?

Erik Raskin: Prior to the simulation, teams in the preventative cognitive-bias modification intervention engaged in a 20-minute computer game in which they looked at a series of morphing faces, were asked to move a cursor to indicate whether the emotion was more of anger or pleasure, and then received immediate feedback on their choice.

During this game, the computer determined the participant’s threshold to threat—that is, the angry faces—and then gave them feedback designed to raise this threshold and ‘immunize’ them from devoting substantial attention to minor threats.

Examination of the manipulation checks showed that those in the computer intervention viewed the mother as ruder than those who experienced the rude comments with no intervention.

As designed, the computer intervention ‘immunized’ participants’ medical and therapeutic performance and teamwork by shifting their attention away from the implicit threat posed by the mother, likely preserving cognitive resources for the tasks at hand. The computer intervention operated not so much by mitigating the appraisal of rudeness, but by making team members more resilient to it.

The teams who did the writing exercise worked on the simulation with rudeness first, and then went to a debriefing room where they were asked to write a paragraph or two about how they thought the mother of the infant felt when it seemed to her that the team was unsuccessful in treating the baby.

By the end of the day, those in the narrative group did not view the mother as ruder than controls. These results suggest that while writing about the experience from the mother’s perspective facilitated participants’ positive reappraisal of her rude behaviour, it failed to help them overcome the cognitive disruption caused by it.

BLOOM: Is there a danger in making health workers less emotionally responsive to families?

Erik Raskin: As mentioned in my answer above, the computer game didn’t make health workers less emotionally responsive. On the contrary, it just ‘immunized’ them, thus changing their focus and less disturbing them in their work.

BLOOM: Are there times when a parent questioning the care is appropriate?

Erik Raskin: Parents questioning the care is always appropriate. They have the right to ask questions. In my opinion we can use it as a means to help us do better, think again about the diagnosis, re-think treatments given and other options of treatment. Generally, this is a good interaction with parents, and many physicians and nurses, like me, see parents as our partners in the goal of giving the best treatment to their children, helping them survive and grow, and go home, as healthy and happy as possible.

There is a big difference between real questioning and seeking explanations in the best interest of your baby, and rude comments, insults and blaming of the physicians and nurses. [In the latter case], parents throw all their stress and frustration (because the infant was born prematurely and is very sick) on the medical team that is trying its best to save their infant, give life and treat as best as they can.

There is also the issue of timing. We allow parents in our NICU all day long, including in rounds, but parents must understand that we also need to treat, to do resuscitation and other procedures, and to look after other babies. So we are not all the time available to answer every question. They should be patient and understand that sometimes we simply don’t have time to talk to them immediately, and we’ll be happy to do so later when we have time.

So, please don’t start shouting at us, making rude remarks about how careless or less attentive we are. This makes us feel bad, makes us ruminate about ‘What have we done wrong?’ and drains our cognitive resources in a way that eventually hurts our performance or even causes us to do unintentional harm.

BLOOM: A media story about your study includes a quote from a doctor who says that outside the NICU, parent rudeness is often a legitimate reaction to poor care and system problems. Is it possible that this could also happen in the NICU?

Arik Riskin: Sorry, but I disagree with this statement. Rudeness is never a legitimate reaction—not in the NICU, not outside the NICU and not anywhere else. This is not a nice way to express your concerns. It is a totally unacceptable form of communication among people in general. It is an act of incivility that is no less harmful than aggressiveness or bullying. 

Parents should and can express their concerns about treatment, and if they think it’s poor care, they should tell this to the medical team. If this doesn’t help, they can talk to their superiors, and if this doesn’t help, they can ask to go and get the treatment in another facility. The problem is that many times it’s not poor care, but mainly frustration on behalf of the parents because their infant is really sick and doing badly despite all the treatments given to him or her.

But, I’m ready to hear this from parents, too, and I’m not ashamed to consult another expert and seek another opinion, as long as it is for the best care of my patients. Unfortunately, many times nowadays parents are confused by a general atmosphere that is very criticizing [about] everything. This is reinforced by the media ‘looking for headline news,’ attorneys looking for law suits, and family members (who think they are supporting the parents by questioning everything, but cause the parents lots of confusion and eventually mistrust in the care their baby gets.

Parents need to have some trust and faith in the team taking care of their baby in order not to lose hope, which is so important for them, and us too. Parents should ask questions, should learn and read about their infant’s condition, and should inquire about the diagnosis and possible other treatments. But at a certain [point] they need to have some trust and confidence in us as medical team members, coming days and nights to do our best for their babies.

BLOOM: Are there differences in how parent rudeness vs medical staff rudeness impacts medical care?

Arik Riskin: Both are as bad, having devastating effects on individual team members and on medical teams’ performance as a whole. We haven’t compared both sources at the same time in the same settings, so I can’t guarantee which is worst. But based on our studies and the studies of Professor Erez and colleagues on rudeness in other settings, both have very bad influences on the [person targeted] and on those who witness it.

BLOOM: What advice would you give parents?

Arik Riskin: Try to be as patient and polite as possible. We understand that you are in real [distress], and are there for you. We even understand when you are not so nice to us because you are sad and worried. But, being sad or worried and even frustrated doesn’t necessarily need to make you rude to us.

Being rude simply doesn’t help and might actually cause the opposite by distracting us and disturbing us from doing our best. 

I have worked with many parents over the years and those that had a positive attitude to all that was happening, despite all the stress and hard times they were going through, coped much better than other parents. I believe that this attitude gave them hope, which is so important in tough times. I think they may have also been more open to the support we are willing and trying as best as we can to give to all the parents of the sick infants and preemies we’re taking care of.

BLOOM: What measures should hospitals put in place to try to reduce rudeness by senior medical staff or among medical peers?

Arik Riskin: Awareness is also important among team members, educating us to treat each other with dignity and respect. The days when a senior physician or charge nurse could be rude to a resident or trainee are over…not because it’s impolite and unfriendly, but because it [endangers] our patients.

By highlighting the impact that adverse social contexts may have on team-level [collaboration], our findings provide the foundation for a wide range of interventions aimed at enhancing patient safety. Our results suggest that instituting protocols and procedures aimed at bolstering the defenses of medical teams to the cognitive distraction and drain elicited by rudeness can help mitigate the devastating consequences of these events, even when they can’t be prevented.

BLOOM: Do you feel there’s a role for narrative writing and reflection, even though the intervention used in your study didn’t show a benefit?

Arik Riskin: Yes, I would definitely not quit this possible route of interventions, especially not reflection, which is an excellent learning tool for medical teams.

BLOOM: Have you considered doing a study to look at the impact of rudeness by medical teams on parents of premature babies? Some parents have traumatic experiences related to being talked to in a callous or dismissive way, or in hearing their child being talked about in a degrading or disrespectful way.

Arik Riskin: This is an important subject, which I’m sorry to say still exists as a problem. I haven’t done research on it, but I know that many others have studied this important aspect of communication.

Teaching physicians and other health workers to talk nicely, gently and politely with parents is no less important than the medical treatment we provide. I recall my first lesson in neonatology as a resident. The director of our NICU then, the late Dr. Berger, taught me. We went to talk to a mother after a delivery. The mother was very stressed and frustrated even though her baby was improving. Then Dr. Berger sat with me and told me her insights about how mothers feel after delivery, and how we need to talk to them and support them. She told me this was my first lesson in pediatrics and in neonatology—How to talk to a mother—and it was more important than any other lesson I’d learn.

I carry this important lesson with me and pass it over to my students, residents and fellows. I still find talking to parents the most challenging, but also the most rewarding, part of my work. I look at them as our teammates in the long, long [journey] we have to go together to make their infant survive and to be as healthy and happy as possible.

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