'Foolishness' plays a critical role in rehab

By Louise Kinross

The ‘fool’ in Shakespeare’s plays and the ‘trickster’ in Indigenous stories held an important role in upending the status quo. A Holland Bloorview paper published this week in the Journal of Medical Humanities notes that the foolishness of therapeutic clowns—their emotional vulnerability and willingness to fail—is at the heart of their work with hospitalized children, producing a ‘joy without demands.’ Clown practices, however, are often seen as ‘secondary to the real work of medical professionals,’ and devalued.

Lead author Julia Gray, a post-doctoral fellow at Holland Bloorview, argues that all clinicians and researchers could benefit from embracing aspects of foolishness in their own work. BLOOM interviewed Julia about the paper, called Seriously Foolish and Foolishly Serious. It looks at how clowning creates a space of vulnerability, surprise and the unknown in which children feel agency, as well as the freedom to express sadness, despair, pain and delight. This spontaneous, undirected, flexible practice isn't usually taken seriously in a medical world grounded in science, expert knowledge and quantifiable outcomes.

BLOOM: Why was there a need for this paper?

Julia Gray: It came out of things I was observing anecdotally about the clowns’ role at Holland Bloorview, and in other hospitals, and reading in academic literature about how clown practice is framed. I was seeing a strange tension between admiration for the clowns and an attempt to legitimize them by framing them as a medical practice. They had to have certain kinds of medical goals, or be supporting the medical goal of other professionals.

As an artist and scholar myself, it seemed such an odd way to try to legitimize what they do. The arts do things that may complement medical goals, but they also do other things: they help us be in the world, they help us feel things, they help us see things differently, and they help us see ourselves differently. Those [experiences] are really important in a health setting, but they tend to be overlooked generally, in practice and in research.

BLOOM: What kind of knowledge has traditionally been valued in children’s rehab?

Julia Gray: Science tends to be valued, and particular kinds of science—objective research.

BLOOM: So quantitative over qualitative research. You also wrote about “high knowledge.”

Julia Gray: Yes. It’s quantifiable, an intellectual prowess that is valued, reasoning. It comes out of the Enlightenment, and the roots of scientific method are revolutionary and incredibly important. But when you value that over other ways of being or knowing, it has the potential to exclude people who may have different abilities and strengths.

BLOOM: You wrote about how foolishness is central to the role of the clown. Why is emotional vulnerability, and a willingness to fail, important to hospitalized children?

Julia Gray: Our rehab practices are continually encouraging them to be independent, and that independence is where strength is, as opposed to being vulnerable. They’re supported to be a certain kind of ‘strong.’ That has implications for how children with disabilities see themselves. Some of them are never going to fit that mould.

Rather than pushing children to fit a particular mould that we understand to be success, we need to think more about what ‘that success’ is? At a philosophical level, it asks us to question what it means to be a human being. Is being independent and self-sufficient valued, above all else? Is it holding down a particular kind of job that makes more money? Or is being playful and joyful enough?

BLOOM: One of your co-authors, Barbara Gibson, is a physiotherapist, which is a more traditional clinical role in children’s rehab. As authors, you note that typically, play in children’s rehab is not an end in itself. It’s always tied to a therapy goal or achieving a developmental milestone. Why is this problematic?

Julia Gray: I think it comes back to what does it mean to be human? Is it not enough to play? Why do we need to use play to control development and decide what is 'normal' or 'abnormal' play? I sometimes think medical culture gets it backwards. These artistic therapies and practices are seen as a way to fix people, rather than as a way to support kids, so they can be in the world as themselves.

BLOOM: That approach can also take all of the joy out of life. I remember when every interaction I had with my young son had an agenda—I was trying to get something out of him, rather than enjoying the moment. And if I wasn’t successful, I felt like a failure.

Julia Gray: There’s this pressure to always be better, but we don’t question what better is.

BLOOM: What if better is happier, and has nothing to do with abilities?

Julia Gray: What if better is chilling out in a bath?

BLOOM: You note in the paper that hospital clowns are often misunderstood. People think they provide simple laughs or positivity, when what they do is actually very sophisticated. You include an example of an interaction between a nine-year-old patient, Daniel, and Helen Donnelly, a co-author, who is a therapeutic clown at Holland Bloorview known as Dr. Flap.

Daniel, who uses a ventilator, accuses Dr. Flap of lying about the death of Jamie Burnett, who was a therapeutic clown at Holland Bloorview. He worked with Dr. Flap until he died of a brain tumour in 2011. Why did you choose that example?

Julia Gray: I wanted to show how the child drives the boat, and Helen really follows his lead. Helen doesn’t balk at what he’s putting forward, when he challenges her. It’s really brave for a child to challenge an adult, and accuse her of lying. She doesn’t try to take control by saying ‘No, no, I’m a serious adult. I know what’s best.’ She follows his play, and lets him lead. She makes herself very vulnerable. She recognizes the importance of not always talking and being clever and being in control.

BLOOM: You write about how fool-like characters historically played an important role in challenging the status quo. You also share examples of how scientists and research students, here and in other rehab facilities, reacted to learning you were researching clowns. They felt uncomfortable and hesitant. In fact, one colleague said she was afraid that if she encountered the clowns, they might make a fool of her. Can you explain?

Julia Gray: Our culture really values high intellect, certain kinds of expertise, and being in control, and the clowns do not offer that. They are constantly playing low status. They relish in being ridiculous and weak and failing all over the place.

That kind of exposes the ridiculousness of how seriously people take intellectual control. It has a place, and we have discovered all kinds of amazing things. But even in science, you need creativity, and there’s so much ‘not-knowing.’ It’s ironic that people get nervous around the uncertainty and not-knowing that the clowns bring.

BLOOM: That’s so interesting, because now I think about it, I remember a couple of times I was having a bad day, and I saw the clowns in the hall, and thought: ‘Oh no, I hope they don’t see me. What if they engage me, and I don’t know what to say? What if I don’t understand the characters they’re playing? What if I can’t say anything, or be cool?’

Julia Gray: People think they need to be funny, and that it’s about wit and intellect. It’s not. It’s about imaginative play, and you don’t have to know anything. You don’t have to know.

BLOOM: How does our focus on science and high intelligence and professional expertise potentially impede creativity and more flexible ways of thinking about disability?

Julia Gray: When there’s an emphasis on a particular kind of knowledge as being more valued, it delegitimizes another kind of knowledge, which comes from people’s experiences and feelings and emotions and senses. For example, clients are constantly being asked to articulate their goals in rehab, but only in certain ways. We say we’re being client-centred, and doing what the client wants. But we expect them to articulate those goals in a way that fits with a world where independence and productivity are valued.

BLOOM: There was an interesting quote related to that in your paper. 'Rehabilitation functions in tandem with efforts at home, school, and community to secure children’s futures as productive, contributing, autonomous and ‘normal’ adults.' I’ve always said that in mainstream childhood, parents don’t talk to their children about goals. It’s a clinical concept.

Julia Gray: I never sit down with my able-bodied kids and talk about what their goals are for their own bodies. I tell them to go outside and play. When a parent is trying to get a child to do things that will make them more 'productive,' it shapes the whole relationship. This opens up questions about what the purpose of rehab is? When we value independence and expertise over other ways of being, it influences our practice. Could we support kids to be who they are in a variety of ways?

BLOOM: There’s a brilliant line in your paper that I want to read. ‘There is little room in the serious scientific aspirations of contemporary rehabilitation practice and research for risking failure through creative experimentation, promoting pleasure, supporting alternative ways of being and doing, particularizing care, and/or thinking about people differently.’

I read that, and I thought: That’s why we don’t do more research on really complex populations. For example, we usually study youth with disabilities who are employable in conventional ways. Why don’t we research youth who will live unconventional futures, and who won't be able to do paid work? What do they do? What kind of a good life is possible for those people? I think we don’t go there because we don’t want to enter into a field where we don’t know the answers. We don’t know how things are going to look.

Julia Gray: And it probably won’t show what we consider productivity to be. We’re more comfortable celebrating certain kinds of successes, but what do we mean by success? We’re in a time where we have to account for every dollar spent, and if there’s money going to help kids be successful in particular ways, we have to account for that. If they’re successful in other ways, you can imagine people saying ‘But how is that going to help the economy?’ All of this is situated in our larger culture and its expectations. Those expectations really limit us, because we don’t critique what we even mean by success or improvement. Why do we need to improve?

BLOOM: Maybe a goal for a child is acceptance, so they feel good about themselves. Your paper resonated with me because I’ve felt a lot of discomfort with how we promote the academic exclusivity, or high intelligence, of our research work. How does that fit with our vision of inclusion?

Julia Gray: We are heavily academically inclined. We are measuring particular kinds of successes and experiences—largely through marks.

BLOOM: Yet some of our population, due to intellectual disability, can’t be successful in academics. You suggest that all rehab clinicians and researchers can enhance their practice by incorporating foolishness into it. What might that look like?

Julia Gray: My son used to take violin when he was 6, and one day, after about five sessions, he showed up and said ‘I don’t want to be here,’ even though he was the one who'd asked to take lessons. The teacher said ‘Okay, maybe we don’t need to practise bows and techniques. Why did you decide you wanted to take the violin?’ 

He said he thought it was a cool instrument. She said ‘Let’s take a look at the instrument,’ and that’s what they did for half an hour. They talked about the different parts of it, without playing it. If the teacher had had in her brain ‘I must teach technique and I have these goals,’ she would have pushed him away and he would have been even more annoyed. She knew that her relationship with him, and with music, was more important than holding the bow in the correct way.

BLOOM: One of the messages in your conclusion is that relationships, and activities that spark happiness, in the moment, with children, are as important as clinical outcomes.

Julia Gray: Therapy and physical function, and relief from pain, are incredibly important, and have a very important place. But it's also important to think about why we focus so much on improving in rehab? What are we improving? What is our understanding of betterment? Why do clinical outcomes take priority over a child being in a good way with a person in a space—being in a good relationship? Isn’t that, really, what life is all about?

BLOOM: What do you hope professionals take from your paper?

Julia Gray: I appreciate they’re in a tough position. We’re in a culture where the pressure is to be ‘better.’ That, according to the funding, is the point. They need to be able to show particular outcomes to justify their practice. Many feel very torn about existing within that structure that pushes them to practise in particular ways—ways that may sometimes be harmful. I don’t know what the answer is. I think we need to rethink what we value. What is valued as ‘better?’ What is valued as ‘improvement?’

BLOOM: What message do you hope parents take?

Julia Gray: To recognize that therapy, or betterment, or improvement goals or practices, can be totally overwhelming, and overtake your relationship with your child. Maybe there are ways to resist that by just being. And playing. Being silly, and sitting in the sun. Try to prioritize that, and remember that the parent and child being together is enough—as opposed to the parent being the fixer.

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When a child has 24-7 needs, mothers bear the costs

An early photo of two of Sheila Jennings' children

By Louise Kinross

As the mom of a son who had severe asthma and a life-threatening immune condition, Sheila Jennings learned firsthand that it was impossible to work outside the home and tend to her child with complex health needs.

“My interest in the support rights of mothers of severely disabled children began after I got divorced and set up my law practice while caring for three children,” she says. “My son missed about 40 days of school in Grade 7, and a similar amount in Grade 8. He had severe infections, was followed by four clinics, and was frequently in the Emergency Room. One time I was just about to go into the courtroom, and I had a call that something was wrong at school. I called my son’s father, who is an emergency room physician, to ask if he could find out what was going on, and he said: ‘I have someone here with a screwdriver in their head.’ Even when I had a spouse, he didn’t necessarily have the ability to drop everything. I started to get sick myself in 2005, and when I became very ill, I had no choice but to close my practice.’”

Sheila recently defended her PhD thesis called The Right To Support: Severely Disabled Children And Their Mothers at Osgoode Hall Law School. “Within complex care, visible and hidden costs have been offloaded onto caregiving mothers by governments,” she writes in the study's abstract. We spoke about her research, and why she believes that the extraordinary demands currently placed on Canadian mothers of children with complex needs might constitute ‘cruel and unusual treatment or punishment’ under section 12 of the Canadian Charter of Rights and Freedoms.

BLOOM: What was the purpose of your research?

Sheila Jennings: I wanted an answer to the question: ‘What are the legal rights to support for mothers who have severely disabled children, and what should they be?’ I thought it would be a very simple question. But it was anything but.

My project looked at literature, as well as 184 cases, which were mostly Canadian. These were cases where caregiving mothers brought law suits or defended against the actions of others. They took on the Canada Revenue Agency or social benefits, or said they needed more spousal support due to their child’s complex needs. I used cases from every jurisdiction and from an online database, so mothers can easily access them in support of their own complaints.

BLOOM: What did you find?

Sheila Jennings: It was fairly uniform that if the moms were single and unable to work, they were falling into poverty and struggling, and they were often opposed in cases they brought. There were sympathetic judges, but caregiving mothers’ support needs slid between categories in law, and often couldn’t be helped in court. There was the occasional win, which might take months or years. Litigating mothers became embattled while also providing care. Lawsuits are exhausting and stressful. And each case was usually just one win—there were hardly any systemic wins, where the court said from now on every mother who needs this support will get this amount.

One of the problems is that child support is considered for the average child. You can ask for add-ons, but the cost of respite care and basic nursing care must typically be fought for.

BLOOM: Can you describe one of the cases?

Sheila Jennings: One public law case was brought by a woman who was divorced and had a six-figure income. She had three children. She came to the Social Benefits Tribunal in Ontario to ask for funding through Assistance for Children with Severe Disabilities (ACSD). ACSD had said no, your income is over the funding cap of $60,000, so you can’t have the amount you say you need. Yet 50 per cent of her income was going to disability-related supports. 

She’s a good example of someone who had a full-time job and a big income, but it still wasn’t enough to make it manageable. The tribunal agreed that she'd made the case for the additional money, but it was on a one-off basis. Three years later, she was back in front of the tribunal when her funding application, over what was, in fact, a discretionary cap, was again refused.

I have so much admiration for these women. They’re living extraordinarily difficult situations with their children, and they’re rolling up their sleeves and taking on the government, or the other parent who doesn’t want to pay. The other parent says it’s the government’s job to pay, and the government says it’s the other parent’s job.

The system for disability supports across Canada is very fractured. It’s not a uniform system, nor can it be easily accessed. The ministries frequently shift people around and change programming. There's rarely an expert in charge with a great deal of knowledge on the file. It’s very hard to get systemic change or sustained change. Much of the work caregiving mothers do is invisible. People can be sympathetic, but they don’t realize how much work is involved and what the implications are. This is a different form of motherhood, and it needs to be supported as such.

BLOOM: I remember when my second child was born without disabilities, being absolutely shocked at how easy her care was.

Sheila Jennings: Yes. Reflecting back on when my third child, who is athletic and healthy, was born, it highlighted for me that the mothers I was studying were different. The support needed for a child who is playing soccer, has tons of friends, doesn’t get sick often and has no physical issues that land them in hospital, is not comparable.

I think professionals who are going to be working with caregiving mothers should be going into the home for two to three days, to see what’s involved. In my project I decided not to call the mothers 'complex-care moms.' I decided to use a feminist lens and use the term 'maternally complex care.' It’s a different form of motherhood.

Too often, people see a regular mom, and they see the complexity as medical- and hospital- and doctor-centred. That is treatment.

It's the mother who is providing the complex care. 

Maternal complexity, rather than medical complexity, gives status recognition to the woman who's doing the care, and Canadian research shows it’s 97 per cent women. Many have given up jobs to care for a child with additional needs. It's an important role in society that carries a price, and it doesn't come with workers' compensation, pay or a pension.

I'm interested in how these women are seen and treated in our culture. They get sympathy and sometimes pity. Or even admiration. But care of this kind is not recognized as the work it is. I’ve said before, going to court as a lawyer on a difficult file was easier, any day, than dealing with the objective and subjective maternal complex-care issues that would arise with my son. 

Caregiving mothers may be traumatized while providing care, and at the same time you’re also running the house and doing everything else women are socially assigned to do.

My research also showed that it's hard for children with complex-care needs to see their mother's exhaustion from the heavy lifting, so to speak. It's an issue for children too.

BLOOM: Did you come up with any recommendations for change?

Sheila Jennings: One recommendation I considered is the treatment of caregiving mothers in light of section 12 of the Charter, which provides that ‘Everyone has the right not to be subjected to cruel and unusual treatment or punishment.’ 

I made preliminary arguments that to have mothers alone held responsible for this care, in the manner it’s currently provided, meets a legal test to show section 12 is violated. 

Mothers’ health is being negatively affected, and not just a little bit. There’s even a study out of Australia about how mothers of complex children have much higher levels of mortality.

BLOOM: There was also a population-based study done by Dr. Eyal Cohen at SickKids that showed an increased risk of early death in mothers of children born with anomalies like heart disease or Down syndrome.

Sheila Jennings: Right. So we know this correlation is an issue. 

BLOOM: What was the typical outcome of the legal cases you analyzed?

Sheila Jennings: Overall, you can see that the mothers are embattled. For example, there was a 2004 mother with a child with progeria, which causes early and rapid onset of aging. She wanted an increase in night nursing hours, and she wanted the government to subsidize, or pay for, private nurses she had to hire when the CCAC nurses didn’t show up. She also didn’t want CCAC to send her personal support workers who didn’t understand her child’s condition.

BLOOM: I looked at the case you sent, and she also wanted registered practical nurses who did overnight shifts to be paid at the registered nurse rate to better retain them. And she wanted a back-up plan with the hospital, so that CCAC-booked shifts wouldn’t be cancelled.

Sheila Jennings: Yes. Unfortunately, she had no legal leg to stand on. The CCAC client was her child, not her. I address this issue as one of relational rights in my project. She lost her claim. It’s 15 years later, and these home-care failures haven’t gone away. We read about the same problems from parents like Marcy White and Samadhi Mora-Severino. We have another generation dealing with the exact same thing.

BLOOM: How could section 12 be used to create change?

Sheila Jennings: Lawyers and mothers doing this kind of care need to get together to list the harms they’ve experienced, and to consider what kind of legal action is possible.

For example, it’s not okay to be on call 24 hours a day, nor to have consistently interrupted sleep for years. This is way outside the gamut of modern day labour standards. A mother interviewed recently by a Montreal newspaper said ‘What kind of world do we live in, where I’m supposed to be up, day and night, providing heavy physical care?’ There isn't a union or workers' compensation to protect these women when they're injured or become ill. Caregiving mothers bear the risks. That's monstrous, and as a society we can do better.

BLOOM: You mentioned that you looked at how our culture views mothers of children with disabilities.

Sheila Jennings: Yes, I did, and it's very interesting. The special-needs mother is romanticized, and put on a pedestal, and is portrayed as having a high cultural value. You think of Princess Diana in Pakistan holding a dying child, or Princess Kate landing on the runway in Alberta, and hugging a child who had obviously been in cancer treatment.

But that runs contrary to the way that caregiving mothers, particularly those who provide maternally complex care, are treated at a provincial level. The reality is that they’re often isolated and alone. Donna Thomson’s book The Four Walls of My Freedom alluded to that. There is exclusion, not only of severely disabled children, but of their mothers too.

BLOOM: What are your next steps?

Sheila Jennings: I hope to teach again this year. I taught last year at the Ontario Tech University, and I was able to bring these issues up in my family law course and also, to a degree, in my human rights course. Students were very interested. I'm also in the midst of writing two papers and preparing a proposal for a book with an academic press.

In addition to her years practising family and child welfare law, and doing her PhD, Sheila Jennings did an MA in critical disability studies. You can follow her on Twitter @SheilaKJennings.

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Collective advocacy must replace mother-led campaigns

By Louise Kinross

A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a fascinating article this month in Disability and Society. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”

We interviewed Sara in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death.

Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.

BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse.

Sara Ryan: Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards.

Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us.

BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.

Sara Ryan: As young parents you’re totally fresh, and you think things won’t be as bad for your children.

BLOOM: In a way, you don’t want to hear about the real struggles of older parents.

Sara Ryan: I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services.

BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us.

Sara Ryan: It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past.

BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults.

Sara Ryan: Young children are cute. But there’s a change happening with young mothers today. There’s one mother on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful.

BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers?

Sara Ryan: That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour.

When we began our campaign #JusticeforLB [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective.

BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain?

Sara Ryan: It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker.

BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering?

Sara Ryan: It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family.

BLOOM: How did you get people who weren’t personally invested in your family to participate?

Sara Ryan: I’d been writing a blog about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold.

BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results.

Sara Ryan: I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called #TheSecretLifeOfUs to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden.

BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented.

When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you.

Sara Ryan: A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’

BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure?

Sara Ryan: I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor.

Read the annual reports of the British Learning Disabilities Mortality Review.

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Jess translates studies into words that families understand

By Louise Kinross

Jess Silver is passionate about health and how we translate research into words the average person can understand. She works as a research assistant in Holland Bloorview’s Prism lab, where one of her roles is to write and edit materials targeted to youth and families. We spoke about how her own experiences growing up with a disability inform her work.

BLOOM: How did you get into this field?

Jess Silver: My passion with medicine and health came out of my own experience growing up with cerebral palsy. I was always looking for other avenues to improve my own situation. I wanted to go to medical school, but I knew that would be challenging because of my physical limitations.

I found out about a medical communications program at the University of Chicago on how to create content that will be easily understood by the general public. I graduated from that program, and now in the work I’m doing, I feel I have a responsibility to help other patients and their families understand clinically what they’re going through. I’ve always been looking for innovative perspectives and solutions that can help me and benefit other people.

BLOOM: What is a typical day like for you?

Jess Silver: I may be editing or writing materials, or scoping out medical databases on a particular topic.

BLOOM: What’s an example?

Jess Silver: Right now I’m working on a project to see whether meditation can benefit a child using a brain-controlled interface to communicate. A lot of the work we do in the Prism lab involves developing technology that allows children who are non-verbal to communicate.

In general, I look at how to edit syntax and grammar and language to make it concise and understandable for the families we’re working with today.

One of my most interesting projects to date was working on an article about Holland Bloorview’s family engagement program in research. I was writing about what the family engagement program does at Holland Bloorview, but also including my own informed perspective as a patient.

BLOOM: Did you come to Holland Bloorview as a child?

Jess Silver: Yes. I went there mainly for physical therapy. I did physio and the Fit and Flex exercise program. I also saw Dr. Wedge for pain, and when I was older I saw Dr. Fehlings.

BLOOM: Did you feel you got the services that you needed?

Jess Silver: Yes. I felt the resources were there. But as a family, we were always looking for more. We believe in Eastern medicine, and we were always looking for alternative approaches to compliment the conventional ones.

BLOOM: Was it challenging for you to move to adult care?

Jess Silver: There were gaps. My parents and I had to do everything on our own, in terms of finding who was going to help me, and what was out there to benefit me. We did receive services through the transition team here, but when I went to university, I found all of the advocacy, and figuring out how everything would work, and how I’d be integrated, fell to me. I felt like I was well prepared, but it I still found it incredibly challenging.

I did my undergrad at Glendon College, and I was the only one in a wheelchair at my campus. I had to explain to everyone that these are my challenges, this is what I need assistance with, and this is how we can work together. Then it was trying to get people to realize that although I have this challenge, it doesn’t mean I’m so different from you. I’m here to get my education.

BLOOM: What is the greatest challenge of your work with the Prism lab?

Jess Silver: The most challenging thing is not having an engineering background, and having to understand the terminology and the workings of devices that are created in the lab. You need to understand protocols for how to develop materials that are digestible for patients, but you also need to understand yourself how this device works and is constructed. Most of the other staff are engineers.

BLOOM: I’ve always had a pet peeve with academic language. I wish we could see lay language in journals.

Jess Silver: It does make things more difficult. What I find so rewarding now is being able to understand that language and, because of my background, knowing how to present it in a way that everyone will understand. When I was a kid and didn’t understand, I'd say ‘Whoa, what did that physician or specialist just say?’ But now I know what they said and it’s rewarding to be able to translate it.

BLOOM: You mentioned that you work remotely?

Jess Silver: Yes. I live in Thornhill and it was difficult for me to commute every day. Also, because of my physical needs, I need assistance from someone for my personal needs. Working remotely allows me to do what I have to do in order to have my quality of life, but still work.

One thing I do find challenging is not being able to be at every meeting or event. But the team is very open to it and accepting. It’s just my responsibility to remind them that I have to be on the meeting with Zoom, or I need to access certain materials.

BLOOM: What’s the greatest joy of your job?

Jess Silver: It’s to know that I went from being a patient, and somebody who lives the experiences that many of our kids do, to working as part of the hospital. I can speak to many of our clients’ challenges through my own experiences, and am able to write in a way that can help a family understand a condition or be able to find the care or resources they need.

I also run my own non-profit for adapted fitness and sports called Flex for Access.

BLOOM: How does that work?

Jess Silver: It creates awareness and raises funds to facilitate adaptive training sessions for individuals who have physical challenges. So we would fund a person’s training, and connect them with a gym or studio that can do it.

BLOOM: I notice you use the word challenge and not disability.

Jess Silver: Yes. I feel that everyone has some kind of challenge, on some level, and mine is just more visible because I use a wheelchair. I never let my disability get in the way of things that I do and pursue. Just this weekend I went indoor skydiving. Through my job at Holland Bloorview, and running my own non-profit, I feel I’m an agent of change.

BLOOM: If you could change one thing about children’s rehab—or research into it—what would it be?

Jess Silver: That’s a good, but difficult, question to answer, because there are many things. I’d encourage people, if they’re given one diagnosis, or one option for rehab, or one way of thinking about a diagnosis, try not to be boxed into that. Okay, yes, this is what it is. But seek other options.

If I could change something in research, it would be to bring a more holistic perspective to the interventions offered as possibly being helpful. For example, the article I mentioned looking at how meditation can or can’t help kids communicate.

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Nick turns to teens to help raise reporting of concussions

By Louise Kinross

Nick Reed is an occupational therapist who joined Holland Bloorview as a research associate. In almost six short years, he’s become a senior clinician-scientist, co-director of our pediatric concussion centre, and most recently, the Holland Family Chair in acquired brain injury. He’s passionate about bringing an occupational therapy lens to rehab for children with sports and other concussions.

It all began when he followed a youth hockey team for a season as part of a graduate research project. Nick put sensors in the players’ helmets, then tracked the number of times they were hit in the head, and how hard. “That opened my eyes to what research could be,” he says. “There weren’t a lot of occupational therapists working in pediatric concussion. I saw it as an opportunity to carve out a niche.” We spoke about his early days and how he’s grown Holland Bloorview’s concussion centre into an internationally recognized leader.

BLOOM: How did you get into the field?

Nick Reed: Growing up I played every sport under the sun. I started lacrosse at age five and played through university and Junior A and was drafted into the National Lacrosse League. So sports were big for me, and I always had injuries. I thought I wanted to bring health care and sports together, and that I’d go to med school or physio school.

One night in third year of my undergrad, I went to an information night on physio. But they ended up presenting first on occupational therapy. It blew me away: This idea that a knee isn’t just a knee—it’s a knee on a body on a person in a family in the community. Thinking about this holistic focus on the person and asking the person what they need—not making assumptions—excited me. I took the leap and changed my plans.

BLOOM: What is a typical day like now?

Nick Reed: A busy one. It’s an exercise in prioritizing across different demands. I’m no longer directly in the clinic but I support our clinics with advice and integration of research. In the early days it was the physicians and me—I was the rehab team. As the clinic grew and we secured more funding and brought on more staff, my role transitioned to focus more on the research, teaching and advising.

BLOOM: One of the clinics it the persistent symptoms clinic.

Nick Reed: It’s our flagship clinic. It’s a globally funded outpatient clinic for kids who have had concussion symptoms for four weeks or longer. We also have an early care clinic that is fee for service for children with a concussion that’s four weeks or less old. They come in to get diagnosis, consultation and rehab.

While I advise these clinics, the majority of my time is spent growing and directing our research program as a clinician scientist.

BLOOM: Can you tell me about that?

Nick Reed: It’s quite large. We have about 20 projects, and five or six of them are major grants. The one I’m most excited about now is a Canadian Institutes of Health Research grant. We want to extend our thinking in novel ways about how to raise awareness of concussions and change behaviour in reporting them among youth.

BLOOM: Why is there still a problem with teens pretending they’re okay when they’re not?

Nick Reed: There are two reasons. The sport culture of never being allowed to be hurt: ‘Just rub some dirt on it and get back out there.’ I had my own concussions, and we didn’t talk about it, we just kept playing. And people didn’t know a lot about concussions—they didn’t know the signs and symptoms.

Eighteen high schools across Canada will be part of a project we’re launching in September. We’ll be getting them to create concussion clubs—to raise awareness of symptoms and what to do, and to provide support to peers who have concussions. Young people will come up with creative and relevant and meaningful ways to educate their peers.

All through this process we’ve had high school students tell us what works and what doesn’t. They’re co-investigators. For example, we created an online portal to support them, and we thought it looked amazing. We took it to a local high school that has a cyber arts program to get their opinions and they didn’t like it at all.

BLOOM: Why?

Nick Reed: They said the colours and feel were too corporate. So we handed over the reins to them and they came up with a whole new colour scheme, logos and flow. One of our family leaders—Gideon Sheps—linked us to that high school. It goes back to that occupational therapy idea of anyone you sit down with is the expert in their own domain. The real strengths come from the person we engage with—whether it’s clinically, or in this case youth in their high school.

BLOOM: What’s the greatest joy of your job?

Nick Reed: People. Engaging with people and watching and supporting people do amazing things. Whether that’s working with and learning from my PhD and master’s and undergrad students, watching them develop and grow and become inspired. It’s a dream, a real luxury of academia. You’re able to build relationships over time, over years.

And it’s not as ‘I’m a supervisor,’ but ‘We’re in this together. I’m learning from you as much as you from me.’ Working with people—whether it’s with sports organizations in the community, schools or youth or family members—is what drives me to get up every day. To be part of a team and engage as many people as possible in a meaningful process that will make a difference.

BLOOM: What is the greatest challenge?

Nick Reed: My role is unique. I’m not just a scientist, or a clinician or an educator. I see myself as all of these things, and we’ve attempted to design our program to integrate all of them. We want to break down the silos. So trying to bring it all together is the greatest challenge. You can’t do meaningful research without the knowledge and experience of sitting down with the families who need it. We’re here to help at every step of the way, be it in our clinics, or through the research and education and support. But these programs fall under different areas in the hospital. So it’s trying to integrate them so we have proper communication and all work together.

BLOOM: What’s the biggest misconception about concussion?

Nick Reed: There are two ends of the spectrum. One is that continued thinking that ‘it’s not a big deal.’ It is a brain injury and it’s a serious injury if you don’t receive medical attention and diagnosis, so you have the potential to prevent repeated injury.

On the other end of the spectrum is hysteria about concussion. We read a lot in the media about brain disorders like depression and Alzheimer’s, or we hear about a professional athlete with serious issues who has died by suicide. A parent may feel ‘If my child has a concussion, everything will change forever.’

We need to tailor a message to land in the middle. It is an injury you want to get treated, and to have rehab support along the way. But it’s also an injury we can manage, for the most part, for most kids. About 70 per cent of kids will feel well within a month. The probabilities of getting back to what you love to do are extremely high.

BLOOM: What emotions come with the job?

Nick Reed: Being in academia and health care, there are always challenges with regards to funding, or to sustaining a program. But I’m a very positive person and I’m always optimistic. That’s good for someone in my role. I truly believe if you put good stuff out, that good stuff will come back. And if you co-create with the people who need it, you will do work that matters.

BLOOM: Do you have problems with overworking?

Nick Reed: I do wear a lot of hats and have a crazy schedule. I think we all do. There was one time two years ago when I got shingles and my body shut down. I had three little kids at home, and I was balancing that with work and my personality of ‘go, go, go.’ I live off adrenaline. I don’t have caffeine, but I get up early, at 5:30.

Three days a week I go to Variety Village. I run the track, do a little bit of weights or play a bit of basketball and swim. I need to be home by 7 to make my kids’ lunches. The other days I tend to get up early and work, either at home or here. Physical activity is a big part of my life. My father had a heart attack at 45, when I was in early high school, and he did his rehab at Variety Village. I really appreciate the opportunity there for my family to be exposed to individuals of all abilities and ethnicities and cultures. I get great questions from my kids, who are seven, five and three.

BLOOM: If you could change one thing about children’s rehab as it applies to concussion, what would it be?

Nick Reed: It’s what we’re trying to do—really focusing on the child. So having the perspective that what this child needs, and loves to do, really matters. They have an opinion, even if it’s a little guy, and we need to engage the child actively in rehab. I’m really proud that we do that at Holland Bloorview, and not just in concussions. We need to move past a focus just on symptoms like headaches to ‘How do you feel? What do you want to do today? What can I do to help you do the things that make you happy?'

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Women with autism at higher risk for suicide, study finds

By Louise Kinross

Utah women with autism were over three times more likely to die by suicide than their peers without autism between 2013 and 2017, according to the first American population-based study on suicidality in autism. 

The study, published in Autism Research this month, used surveillance data in Utah from 1998 to 2017. The researchers broke the study into four periods of five years. During the first three periods, the risk of suicide between autistic and non-autistic people was similar. But from 2013 to 2017, death by suicide in the autism population was significantly higher than in the general population, and this increase was driven by suicide in females.

BLOOM interviewed lead author Anne Kirby, assistant professor in occupational and recreational therapies at the University of Utah.

BLOOM: Why was there a need for this study?

Anne Kirby: There's been a lot of talk lately that people with an autism diagnosis might be at higher risk for suicide, but most of the research has used clinical samples of people who have come in to a certain clinic, or convenience samples. We didn't have any good population-based research, except for one study done in Sweden a few years ago. 

The Swedish study looked at all causes of mortality in autism, and found people who had an autism diagnosis were more likely to die from suicide than others. We wanted to look at that, and expand that population-based research in the United States.

BLOOM: Were you surprised by your findings?

Anne Kirby: In general, yes. Because autism is less diagnosed in females, and suicide is known to be a less common cause of death for females, we wouldn't have had any reason to believe we would find the higher risk in women. It was consistent with what was seen in the Swedish study. 

BLOOM: I think it's important to emphasize that even though there was an increased risk, the actual number of deaths was small. From 2013 to 2017, seven women with autism died by suicide.

Anne Kirby: Suicide is a rare occurrence, so even though the risk is three times higher, it's still rare. The conventional wisdom is that females are much less likely to die from suicide, but with females with autism, we found that's not the case. 

One of the things that's interesting to me is that for a long time, even mental-health clinicians who worked with this population didn't think autistic people would consider suicide.

BLOOM: Why's that?

Anne Kirby: It's hard to say exactly, but it's possibly related to a general belief about suicide. It's often thought that there are social influences, but there's a long-held misconception that people on the autism spectrum aren't affected by their social surroundings. 

In the past, we weren't as worried about loneliness and the influence of bullying. Certainly, clinicians and the broader research community have really clued into the fact that those are real concerns autistic people have.

So they may face some of the same social influences as the general population, but there's an array of other reasons why they may experience suicidality—biological, neurological, genetic, social. Employment is something many adults with autism struggle with.

BLOOM: What might be the factors that contribute to suicide in women with autism?

Anne Kirby: That's an area that needs a lot more research. There was one study that talked about how camouflaging, or masking or hiding, your symptoms, and trying to fit in, was more associated with suicidality. It also suggested that females might be more likely to camouflage, and to be better at it. So they may have added pressures around fitting in and identity.

The other thing I've been thinking about is how there's a growing awareness of autistic adults and self-advocates. But still, our stereotype is very male. So females may feel especially isolated, even from the autistic community.

BLOOM: Were any of the deaths of women with autism in Utah medically assisted deaths? I know a study in the Netherlands looked at cases of medically assisted suicide that included people with autism.

Anne Kirby: To my knowledge, no. It's illegal here in Utah.

BLOOM: Are there studies looking at the effectiveness of treatments for depression and anxiety, specifically in people with autism?

Anne Kirby: The research on mental health in conditions like autism right now is scant. Most of the research out there is descriptive, looking at the prevalence of conditions, and they're highly prevalent. To my knowledge, there's not much research looking specifically at interventions.

Before we even get to treatment, there's a lot of concern, and hopefully some research being done, on whether or not our evaluation tools are appropriate for identifying depression, suicidality and anxiety in people with autism. The measures we use haven't been validated for people on the spectrum.

I don't think we have a good sense of whether the interventions that have been shown to be successful with other groups are appropriate for this population, or if they need to be tailored. This is a huge priority area for many autistic adults. I hear, repeatedly, that adults with autism have trouble finding mental-health providers who are really familiar with autism.

BLOOM: What are the next steps for your research?

Anne Kirby: In the paper we just published, we had some demographic data about the group that had autism and died by suicide. We're hoping to get medical billing data, so we can have a sense of what co-occurring conditions they had, and what might be potential risk factors, or warning signs, from a co-occurring condition standpoint. We're eager to do that.

We're also eager to look at data on suicide attempts as well. To get a sense of whether people with autism are attempting suicide more often than their peers, or if the difference we saw is really in suicide deaths.

Read our BLOOM story about Sweden's 2016 population-based study on suicide in people with autism. 

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Weight 'talks' leave autistic youth feeling blamed, shamed

By Louise Kinross

Obesity in children is one of the most serious public health challenges according to the World Health Organization. Children with autism are more likely to have higher weights because they’re often less active, can have unusual eating patterns, and may take medication that causes significant weight gain.

The literature encourages doctors to talk to children about the risk of unhealthy weight, but to date there’s been no research on how to do this without harming a child’s self-esteem. A new study in the journal Autism is the first to ask autistic youth themselves what it’s like to be on the receiving end of clinic talks about their weight.

Researchers interviewed eight youth seen at Holland Bloorview’s psychopharmacology clinic who take atypical antipsychotics to treat irritability and aggression. These drugs can cause a pound of weight gain a week, probably because they cause insulin resistance.

Most of the children aged 10 to 18 were interviewed in their homes after receiving a social story that explained who the researcher was, and what to expect from the interview. Patrick Jachrya was the lead author on the paper, which comes from a research program headed by senior scientist Amy McPherson. We talked with Amy.

BLOOM: Why was there a need for this study?

Amy McPherson: This study came about after a few years of Evdokia Anagnostou and I talking in the coffee lines at Holland Bloorview about the work I do on weight in kids with disabilities.

Evdokia, who co-runs our Autism Research Centre, felt my work was much needed in working with children with autism, especially those she sees in the psychopharmacology clinic. One of the side effects of the drugs these children are on is considerable weight gain. Evdokia was having conversations with children and families about this and felt she didn’t have the training or support to know how to approach these talks.

BLOOM: What were the key results?

Amy McPherson: Generally the kids found weight discussions very anxiety provoking. They were very nervous about having these conversations, especially if the topic came out of the blue and they weren’t expecting it. Trust was an important part of a relationship to have these discussions without distress.

Children had often seen many health professionals before coming to Holland Bloorview. Unfortunately, all participants described having experienced weight stigma from clinicians (who very likely didn’t intend it). They said they felt the stigma, and it made them afraid to talk about their weight because they were expecting to be made to feel very badly about it.

BLOOM: How does weight stigma in the wider world influence these talks?

Amy McPherson: It’s fair to say that the youth had internalized the societal message that smaller bodies are better and desirable and healthy. This had often been reinforced at home by their parents, and also by their doctors and nurses, who they see quite regularly. That’s the world we live in. There was some evidence that they had started to perseverate on losing weight, and that it became a preoccupation.

BLOOM: To what did the doctors attribute their weight gain?

Amy McPherson: We know that many doctors and nurses assume that kids are eating too much and not exercising—even though medication likely has the biggest effect. Children were made to feel lazy and blamed. They feel like they’ve failed, because they’re being compared to typical weight charts. Families might be told ‘your kid is just off the charts.’

BLOOM: Even though those charts aren’t made to reflect weight gain you would expect as a drug side effect?

Amy McPherson: Yes. It’s viewed as a personal failure and within the control of the individual. Even though we know that weight is affected by so many things beyond the individual.

BLOOM: Some of the participants described professionals scolding them and trying to scare them. Why doesn’t that approach work?

Amy McPherson: How long have you got? We know many health-care professionals think that they can shock people into losing weight. The science tells us that this approach doesn’t lead to weight loss.

BLOOM: What does it lead to?

Amy McPherson: Weight gain. It can increase poor eating habits and overeating and binge-eating. And when children feel blamed and shamed, they don’t feel like going to the gym and working out. They avoid people. It also works on the stress hormone circuit, so that can lead to weight gain. Blame and shame have absolutely the opposite effect of what health professionals intend.

BLOOM: It struck me that the youth described incredible anxiety about their weight, and especially if they didn’t realize the doctor was going to bring it up.

Amy McPherson: Kids with autism often feel quite comforted by routine and knowing exactly what’s going to happen, so this is a particular population that may benefit from a more structured approach to talking about weight.

BLOOM: How would that look?

Amy McPherson: The number one question is to ask permission. ‘Is it okay if we talk about your weight today?’ Or even better, something like ‘Is it okay if we talk about how you can stay healthy and energized?’ If they say no, you can ask if it’s okay to talk to their mom about it. By focusing on growth and health, instead of weight, clinicians can make it a regular part of discussion and then it’s expected, and it takes the stigma out of it.

BLOOM: It was fascinating that the youth said it made them angry that they perceived doctors and nurses as trying to change them.

Amy McPherson: We’re always trying to fix and change. One of my favourite lines is when clinicians say: ‘All you have to do is this…’ By taking that approach we’re putting the sole responsibility onto the individual, and not recognizing the many uncontrollable factors that lead to higher weight. We don’t know how to treat childhood obesity generally, so we’re often very unrealistic about what we’re asking children with disabilities to do, given the complexity of their lives.

BLOOM: Yes, if losing weight was a simple matter, there wouldn’t be an industry making billions of dollars off it.

Amy McPherson: We’re often asking families to fundamentally change how they function and not recognizing what a huge thing that is.

BLOOM: I guess in many cases families feel that the entire family has to change their eating habits?

Amy McPherson: Yes. While promoting healthy habits across the family isn’t necessarily a bad thing, with children with autism, food is often used for good behaviour. So if a family has found a way to manage behaviour so that everyone can be happy, we’re asking a lot to take that away from them.

Families feel profoundly guilty that they’ve given their approval for their kid to go on medications that lead to huge weight gain. And to be fair, heath professionals often have a lot of moral distress that they prescribe these drugs. Unfortunately, they’re often the only thing that’s reduced a child’s self-harming and enabled them to function, for example, to go to school.

BLOOM: So there isn’t really an alternative. Youth in your study said they felt negative when professionals used the words fat, obese and overweight to describe them. Interestingly, they said when language like that was used, they immediately tuned out what the person was saying.

Amy McPherson: We’ve done quite a lot of work on language in our interactive casebook on how to have conversations with children about weight and health. Phrases like higher weight and bigger body, which are purely descriptive, may be helpful. But there isn’t one word that you use with everyone. Clinicians need to talk to families about terms they find acceptable.

BLOOM: In what way did the youth feel clinicians stigmatized them?

Amy McPherson: By making it seem like a personal failing, and the perceived assumption that they were being lazy, eating bad food and not exercising. This was upsetting given the huge role of medication in their higher weights.

BLOOM: These medications were causing dozens of pounds of weight gain, right? Now just a few pounds?

Amy McPherson: Yes, for some kids it could be an increase of 20 to 30 pounds. There are risks associated with higher weights: they can cause a metabolic syndrome that’s a precursor to chronic conditions like Type 2 diabetes or heart conditions. But the discussion can’t centre just around those extreme cases. People of many body sizes can be healthy.

BLOOM: How did the clinicians usually tell kids they could lose weight?

Amy McPherson: Eat less, move more. All you have to do is…

BLOOM: The study talked about how these children became obsessed with their higher weights, and this made them feel bad about their bodies.

Amy McPherson: Many had huge self-esteem issues. They felt they had to achieve a perfect weight. They knew it would please people if they lost the weight, but they couldn’t do it.

BLOOM: What advice can you give health professionals on how to approach this?

Amy McPherson: In our casebook, we list a number of sentence starters that clinicians can try out. Instead of talking about a child’s ideal weight on the Body Mass Index (BMI) chart, they can talk about a child’s best weight—which is the weight a child is at when they’re living a healthy life that they truly enjoy. They need to know that there are many ways of being healthy.

BLOOM: What are next steps for the research?

Amy McPherson: We’re using the casebook with our autism clinicians here and asking for their feedback on how they’re using it in their clinical practice. In the future, we’ll do a broader implementation study involving a number of different children’s clinics.

A related study in Autism Research includes interviews with the same youth, as well as their parents and health professionals. Notably, professionals said they didn’t have sufficient training to feel confident in identifying and addressing higher weights in children with autism.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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Telling clinician and patient stories increases empathy in nurses

By Louise Kinross 

A six-week narrative group for inpatient nurses at Holland Bloorview promoted greater empathy for patients and families, for each other, and for the nurses themselves, according to a study published in The Journal of Pediatric Nursing last month.

I was a facilitator on this project, which was led by Keith Adamson, then collaborative practice leader at Holland Bloorview. The other facilitators were Andrea Charise (photo centre left), who directs an undergraduate health humanities program at the University of Toronto, and Shelley Wall, a medical illustrator and assistant professor in Biomedical Communications at U of T. Sonia Sengsavang (photo right), a PhD candidate in developmental psychology, was research assistant and Michelle Balkaran (left), a nurse and now an interim operations manager here, was part of the research team.

I will write pieces on each of three areas where the group was shown to improve empathy. The first was empathy for patients and families.

Each 90-minute session began with reading of a patient story, poem or comic that addressed common themes in children’s rehab such as ‘Seeing from different points of view;’ ‘Obstacles to empathy;’ and ‘Making room for hope.’

Facilitators led a discussion of the reading, then gave participants a related writing or drawing prompt. For example, ‘Write about a time that you received care’ or ‘In a three-panel comic, tell the story of a patient through their parents’ eyes.’ Participants then shared and discussed their work.

In the study, empathy is described as “The capacity to imagine the situation of each patient and their family—understanding their feelings and perspective, and responding in ways that make patients feel heard and cared for…” 

Participants, from each of Holland Bloorview's inpatient units, worked with children hospitalized following painful bone surgeries or life-changing trauma, such as brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group. 

Prior to the group, nurses expressed a desire to understand the family’s perspective, but often in the jargon of patient and family-centred care, the study found. For example, they “partner” with the family, and “Think of yourself being in their shoes,” but don’t give specific examples.

After the intervention, participants described a new understanding that every family has a unique backstory—the complex, often painful experiences that occur before and during the current care episode. This backstory guides concrete ways to express empathy, through kindness, listening, being aware, flexible and patient, trying not to judge, and giving the family the benefit of the doubt.

“These stories helped me think, Okay, this is a young girl,” one nurse said. “She misses her mom. Let’s just take five minutes.” Another said: “trying not to be so quick to judge things and to listen better.” And another: “On Tuesday when I was doing a port needle with a patient who has cancer…I [thought], ‘oh my goodness they are sick for a long time and it seems, like never-ending’…that insight that I got from the comic…it’s like ‘Yea, this must be really hard in their life.’”

Along with this new recognition of the complexity and fragility of families comes the understanding that nurses’ words and actions have tremendous power to help or harm.

Prior to narrative training, participants described a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing emotional support. Given time pressures and the expectation to maintain professional detachment, they prioritized technical tasks over emotional support, describing the latter as “outside my nursing hat.”

After the narrative group, the nurses elevate compassion, listening, being flexible and providing a safe space to families, as being on par with direct nursing tasks. For example, “Yes, we do the technical stuff but we feel like we’re so much more the emotion, the support, as well,” one said. And: “Really taking that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.”

Nurses also reported being more likely to share personal information if they felt it would help them connect with families on a human level. “Sometimes telling [patients/families] something about your own life may put them at ease or help them relate better to the situation they’re in.”

The researchers coined the phrase moral empathic distress (MED) to describe a new, emerging concept in rehab nursing. “MED can be considered an internal state associated with nurses’ feelings of profound helplessness, which emerges when nursing interventions are unlikely to alleviate a pediatric patient’s physical pain or chronic condition,” they wrote. This was heightened in rehab because clinicians develop relationships with children and families over months to years. Pre-intervention, nurses described this dilemma: “It’s more like picking up your own child, right?” said one participant. “So when we see suffering it’s more disturbing.”

After narrative training, participants were more likely to recognize that when there is no medical solution, their emotional presence with patients and families was invaluable. “Maybe there’s nothing more we can do, but… what I’ve learned is just to be present for the family and be their support,” said one. “And to hold their hand and to tell them, ‘Cry and be mad, because that is normal—you’re going to grieve.’”

Through storytelling, participants learned that their peers all experience work-related emotions like regret, grief and helplessness. Knowing that they were not alone in these emotions helped them cope. “One of the other [nurses]…was reading her piece and taking about how her patient was in pain and she was trying to help and it’s not helping,” one participant said. “And in the intervention she’s crying. You know, seeing how it’s not just me who gets really emotional and thinks about it—it’s other staff too.”

We'll explore how the narrative group increased empathy for participants' work peers and themselves in future posts.

This project was funded by a Catalyst Grant from the Bloorview Research Institute.

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Got a kid with a disability? App makes finding services easy

By Louise Kinross

When your child has a disability, how do you find the best therapies, adapted sports programs, or accessible playgrounds and restaurants?

It often involves a lot of trial and error, and, in the case of private therapies, wasted dollars when the fit isn’t right.

That’s why researchers at Holland Bloorview are developing a crowdsourcing app to help parents and kids find nearby Toronto services that meet their specific needs. The app will include a user quality rating system of one to five stars.

“We need this application because information about services is scattered on the Internet, and it’s time-consuming for families to find what they need,” says Eric Wan, the Holland Bloorview software developer leading the project. Eric is beginning his PhD in biomedical engineering at the University of Toronto.

“With this app, we’ll have clients sign up for accounts and specify their needs, diagnosis and location,” Eric says. “Then, each time they use a service, they will rate it on a five-star system. The app will help families find quality services more efficiently.”

Eric says his team already has a prototype, and hopes to begin six months of beta testing with about 100 users in September. The app will include public and private services and can be used on a phone, desktop computer or tablet.

The initial idea came from Julia Hanigsberg, president and CEO at Holland Bloorview, who has a daughter with a disability. “What I constantly hear from parents is that it’s hard to know what’s out there in terms of services, and the best source of information is often other families,” Julia says. “Clinicians say it’s hard to keep up with available services and have accurate, up-to-date information to give to families. I believe in the power of harnessing the knowledge and experience of the crowd.”

Eric says he began computer programming as an eight year old, and loves it because “there’s always something new to learn. It never bores me.”

Years ago, his first assignment at Holland Bloorview was to classify swallowing data on the aspirometer—a sensor worn on a child’s neck to alert families when a child was about to aspirate. “That was the very first time I used software development for something practical,” he says.

Eric says he often uses Yelp, a restaurant rating, to find out whether venues will accommodate his wheelchair. Eric is himself paralyzed from the shoulders down due a reaction to a measles shot at the age of 18.

His PhD will be supervised by Holland Bloorview scientist Azadeh Kushki. “She’s very open to new ideas and gives me a lot of flexibility in how exactly to develop the software,” he says.

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