Friday, November 16, 2018

A child's unhappiness, not diagnosis, most strains families

By Louise Kinross

Unhappiness and worry in children with disabilities is the most significant predictor of negative impact on family well-being—regardless of diagnosis—according to a study published last month in the Journal of Intellectual Disability Research.

Over 200 Canadian parents of children with disabilities like autism, cerebral palsy and intellectual disability filled out surveys about their child’s function, behaviour and emotions, and how it influenced the family. The children, in Alberta, Ontario and Quebec, were aged four to 13. 

Despite parent perceptions that their children had more serious problems in areas like peer relationships or inattention, “it is children’s worries, fearfulness and general unhappiness that is most impactful on the family’s ability to maintain their social, financial and personal well-being,” the authors write.

Parents assessed negative impacts of the disability on the family related to “increased time and financial demands” and “disruptions in family routines, social isolation and decreased emotional well-being.”

BLOOM interviewed Lucy Lach, an associate professor in the School of Social Work at McGill University, who co-authored the study with Dr. Emily Gardiner at the University of British Columbia. Kids Brain Health Network funded Emily's postdoctoral research. Emily used a data set developed by Parenting Matters, a team studying what it means to parent kids with disabilities. Parenting Matters was funded by the Canadian Institutes of Health Research and Holland Bloorview Kids Rehabilitation Hospital Foundation.

BLOOM: Why was there a need for this study?

Lucy Lach:
Emily, who is the lead investigator, is interested in tackling this issue of the value of categorical vs. non-categorical research. Categorical research is diagnosis-specific, and non-categorical research cuts across diagnoses. From a research perspective, there’s an ethical dilemma about funding being allocated only to specific disorders.

There’s a whole industry of conferences and journals dedicated to autism and cerebral palsy and epilepsy. But other disorders—particularly as we get more fine-tuned in locating genetic disorders—are so tiny, that their voices get excluded.

Non-categorical research allows parents to find shared experiences—not because of their child’s diagnosis—but because of similar functional impairments. This is research that can benefit all families.

BLOOM: What were the key results?

Lucy Lach:
There were three key variables that came out as significant predictors of how negatively parents appraise the impact of a child’s disability on the family. The most significant was higher emotional symptoms. These refer to fearfulness, worry, sadness and withdrawal. The other two predictors were lower social skills and lower practical, daily-living skills.

BLOOM: What kind of emotional problems were you looking at?

Lucy Lach:
These are internalizing behaviours like fearfulness, sadness and being downhearted. They’re often invisible. With externalizing behaviours like aggression, conduct problems and combativeness, it’s something very physical, and you know it when you see it.

A child who is more withdrawn, or fearful or sad, may be interpreted as a child with a quiet nature, or a child with a lack of motivation. They’re not disruptive, and they’re less likely to come to the attention of teachers. Unless a parent is worried about their child’s emotional state, it’s not likely that clinicians will pick up on it.

The results are far-reaching because they suggest that when a child is unhappy, not only is it the worst feeling for the parent, but it has a negative impact on the entire family.

BLOOM: Was that a surprise?

Lucy Lach:
I would not have predicted this result. I would have thought that a child’s aggressive behaviour, rather than emotional problems, would have the highest degree of negative impact. People don’t realize how important a child’s emotional life is.

I remember when I was doing my work with children with epilepsy, we were paying attention to aggression, because it’s so disruptive in the classroom and with peers and family. But we weren’t at all paying attention to fearfulness and sadness.

BLOOM: What can clinicians take from this?

Lucy Lach:
I think the assessment of fearfulness and sadness and worry is really important in clinical practice. We know from the literature that parents are much better judges of their child’s externalizing behaviour.

Kids themselves are a better judge of their internal state because they’re more tuned into it. So clinicians need to use measures that include emotional symptoms and—to the extent possible—have the child complete them.

BLOOM: So it would be important for children who are non-verbal to have another way to identify their feelings?

Lucy Lach:
I used to use cards with faces on them, and ask kids to point to the one that shows how you feel inside, how you feel in your heart.

Clinicians need to assess, assess, assess, and develop programs that address emotional symptoms in kids.

If you want to help families be less negative in their appraisal of the impact of their child’s disability, develop programs that target a child’s emotional well-being and social skills.

BLOOM: We know that parents of children with disabilities have higher rates of depression and anxiety. Does the study in any way tie a child’s emotional problems to a parent’s emotional state?

Lucy Lach:
No, we can’t extrapolate that. We could do a separate study with the same data to look at whether a child’s emotional problems are predictive of parent depression and anxiety.

BLOOM: The study notes that children’s functioning within a diagnosis often varies greatly. And that it’s better to target interventions to similar functional problems across diagnoses. This fits with a move here at Holland Bloorview to ‘personalize pathways,’ so that a child receives services to meet their needs vs. their diagnosis. But that’s not the way children’s rehab has traditionally been set up, is it?

Lucy Lach:
Absolutely not. That will be hard. We have clinics that are specific to diagnoses, journals specific to diagnoses and conferences specific to diagnoses. The world is structured by diagnosis.

BLOOM: In the section on limitations of your study, it says that the Family Impact of Childhood Disability Scale you used has positive and negative subscales, but this study focused on negative experiences. So, in addition to the negative impact of a disability on a family, there are also items looking at positive impact. Is there anything positive parents can take from the study?

Lucy Lach:
Yes. The idea that parents simultaneously hang on to positive and negative aspects of the impact. We need to inquire, and help families build, their narrative around how having a child with a disability has had a positive impact on their family. It’s not a narrative that they’re invited in to frequently. We should be asking the question: ‘Tell me about how your child’s disability has had a positive impact on the family.’

Tuesday, November 13, 2018

'Endangered Syndrome' ad sparks controversy

By Louise Kinross

Have you seen the new ad by the Canadian Down Syndrome Society? Young adults with Down syndrome dress up as pandas, polar bears and lions to suggest that, like these endangered species, their well-being too is threatened.

At, the group shares why their existence is precarious: births are falling, 65 per cent are unemployed, and one in four live in poverty. They note that animal welfare organizations have 90 per cent more funding than Down syndrome organizations in North America.

You can read the group's letter to the IUCN Global Species Programme Red List Unit. 

Currently, there are almost twice as many hands-downs vs. hands-ups on the ad at YouTube, and one Toronto woman with Down syndrome criticized the ad for comparing people to animals.

I personally like the ad. I think it makes a powerful statement by reminding us that we're willing to devote more resources to endangered animals than to human beings.

I also think that the ad plays, in a clever way, on the stigma that people with disabilities are less than human. Many viewers will not want to be reminded that, according to research, we carry this kind of implicit bias at a subconscious level. Perhaps that is where much of the discomfort with the ad stems.

I recognize at least two of the actors from the play RARE, which was part of the Toronto Fringe Festival in 2012, and starred nine actors with Down syndrome telling their stories. One is Krystal Nausbaum (photo above), a former BLOOM role model.

Krystal and a number of the RARE actors came to Holland Bloorview for a BLOOM speaker night about the play and, during the discussion, spoke about their concerns with prenatal testing. These are people who speak their mind on a number of issues. They are not simply mouthpieces for the Canadian Down Syndrome Society. 

I find the ad's costumes beautiful and unique. They make me think of the beauty and value of diversity.

The ad directs people to the website to sign a petition. I was disappointed when I got there that there was, in fact, no petition. 

What did you think of the ad? Post a comment below!

Thursday, November 8, 2018

'Cancer throws you in the deep end'

By Louise Kinross

The other day I saw the image above on social media and clicked on I draw childhood cancer, a Facebook page run by Angus Olsen. Angus, who lives in Australia, is trained in animation and began drawing his experiences when his daughter Jane was diagnosed with an aggressive cancer in 2016 at age 2. “It was a way to visualize the unspeakable,” he says. Since then, parents of children with cancer worldwide have written to say his illustrations make them feel less alone. He’s now making comics to help explain procedures, like inserting a nasogastric (NG) tube, to preschoolers. These will help parents, child-life specialists and other professionals reduce anxiety in hospitalized children. We spoke about the role of drawing at his daughter's bedside, where he lived for months.

BLOOM: When did you first start drawing about Jane’s experience as a cancer patient?

Angus Olsen:
I was living with her in hospital in 2016 when she was doing some heavy chemotherapy, and her tumour grew rapidly—it did the opposite to what you expect them to do. It became quite serious. I was extremely lonely, and people kept asking me questions I didn’t know how to answer. So I started to draw a comic called Jane to explain how lonely it was, and to explain situations that you can’t quite explain in words. My wife had been living with Jane until she came down with flu, and then we swapped.

BLOOM: Did you draw on a daily basis?

Angus Olsen:
I kind of drew when I felt like it. I did a lot of sitting, staring at Jane’s numbers, and hoping they’d go up. It wasn’t just in her hospital room, but in the oncology clinic where she received chemo. One day, for some reason, she wanted to fly, so I drew her as a pilot flying a plane (see below).

Originally I was drawing for myself, but then I put them on Facebook. It was to try to explain to people ‘This is what it’s like.’ Then I joined a couple of pages dedicated to dads of children with cancer and started to make friends. Some of the dads had daughters who were at the same stage of treatment. Even though cancer is very individual, and everyone is different, they were very helpful because I could ask ‘Is this normal?’ Cancer throws you in the deep end.

While your child is doing treatment you feel like you’re abusing your child. You know it’s for their sake, and you just hope on the other side that they come out close to normal.

As I became friends with other cancer dads, there were little things that impressed me about their kids. The first child I drew like a warrior on a horse, because she was remarkable in how she continued to have a life despite what was going on. It started off with me asking these dads if they’d like me to have a crack at drawing their child. Rather than send me photos, they would have me go through their Facebook page so that I could see what the child looked like disease-free. Especially for some of the children who had passed away, I wanted to show what the child looks like free of cancer. Because in reality, the children who die are finally free of it.

BLOOM: Parents often feel helpless in hospital when their kids are going through these treatments. Did drawing provide a useful distraction or a way of thinking differently about what was happening?

Angus Olsen:
It was a way to visualize the unspeakable. It helped me, but I guess I don’t know how to explain it. I know now that I wouldn’t remember anything that happened after the trauma if I hadn’t drawn it. It felt like it needed to be done—to explain the unspeakable to people and myself.

My most recent art is about placing an NG tube. For a long time when I was in hospital, there was nothing about NG tubes. I didn’t know why I was ramming this tube down my child. I thought maybe there were ways I could be practically helpful to other dads of kids with cancer, by giving them something visual that explains why something like an NG tube is important. I only posted that the other day, and the reaction to it is shocking to me. It’s had more than 70,000 views.

BLOOM: Parents are often asked to hold their kids down for these procedures, and it’s incredibly traumatizing.

Angus Olsen
: It feels abusive. You feel like you’re abusing your child. Yet you know it has to be you, it can’t be a stranger doing it. At least that’s how I felt. That was really rough on me.

There were lots of other things, too. Like the bandage on the dressing on the child’s NG tube can tear their cheeks off. The actual insertion is quite quick, but the dressing change can take a long time and cause a lot of pain. When Jane’s was finally taken it out, she’d had it for more than a year. Some children vomit them up, and are irritated by it the entire time.

BLOOM: When you talk about the child’s cheek getting ripped—wouldn’t they have come up with some kind of adhesive to prevent that by now?

Angus Olsen:
There’s a lot of technique involved, but sooner or later, the child’s cheek gets worn down, and they run out of skin. And because children are children, and play, sometimes they bump or rub into something, and it tears off. The nurse doing it is very nervous, too. It’s very traumatic on nurses.

BLOOM: That’s what we found in our narrative group for inpatient nurses—that clinicians can have feelings of helplessness and grief when they aren't able to prevent suffering, in the same way that parents do.

Angus Olsen:
If the nurse is a new nurse, if they’re fresh at this, you’re a parent comforting a nurse. It’s an intensely personal relationship. Even though it’s the nurse’s job, it’s incredibly traumatic on them.

I had one male nurse at the local hospital say that Jane’s case was the most traumatic thing he’d seen in his life, and it was the only time he’d ever cried in clinic. They’re all clearly impacted by what they do, but they keep going. I have nothing but praise for nurses.

BLOOM: Did you ever make mental notes of interactions with staff you found extremely helpful, or not helpful, in order to later illustrate them?

Angus Olsen:
I’m pretty forgiving when it comes to the clinicians. I know they’re human. It’s really a struggle for me to watch a new nurse trying to grapple with what they’ve got to do. You don’t want your child to be the experiment to learn what they’re doing, but you know they’re going to help thousands of children. I’ve never come across a bad interaction with a clinician.

BLOOM: Have you thought of doing a graphic novel?

Angus Olsen:
I’ve done graphic novels in the past. Facebook is kind of like a sound bite. People can see an image, interact with it and move on. You can pack a lot into an image, and have it received by many people. The distribution of a graphic novel I don’t think is as wide.

For example, the comic about the NG tube is only eight frames, so you can swipe through it with your child sitting on the bed. I’m looking for a short impression, something that hits someone in the heart and they say ‘Yes, yes, this is me.’

In the future I’d like to draw all of the different childhood cancers.

BLOOM: Did your images have an impact on Jane, or was she too young at the time? Your series about the NG tube could be used by child life specialists to prepare kids.

Angus Olsen:
Jane was too young. She was just excited: ‘Oh, that’s me. Daddy drew me doing this.’

BLOOM: Were there any downsides to your drawing? I’m thinking of an interview I did with a dad of a toddler with type 1 diabetes. He was a filmmaker, and when his daughter was diagnosed, he began filming. But at a certain point, he realized he was hiding behind the camera, because he was so afraid of making a mistake with his daughter’s treatment.

Angus Olsen: For me, the downside of this drawing is that these children do die. It’s actually quite a lot of emotion. I’ve had to wipe tears off my iPad at times. It impacts me in ways I didn’t realize it would. Parents of deceased children from all over the world message me to see if I’ll do their child’s portrait. I’ve had to stop doing that, and focus on the work with a broader impact on cancer, so it’s useful to thousands of people. It’s all about using your gifts in the most useful way.

BLOOM: How is Jane?

Angus Olsen:
She’s been in remission since 2017. She’s five, and starting school. She’s doing very well, but she’s still having a lot of physio because her cancer made a mess of her legs. So she’s learning how to walk properly and we’re training her to develop her legs. The scenario they gave us was that she’d either pass away, or be on a bag for the rest of her life. The fact that we came out with a relatively healthy child when we were dealing with the reality, in hospital, that she could die, was very, very fortunate.

BLOOM: It must be surreal to have had such an extreme experience.

Angus Olsen:
It is. You know that comic of me sitting staring at a blank wall? Cancer parents understand that image. Very recently, Michael Bublé’s been talking about his struggle with what’s been happening to his son. And he says things like ‘I can’t talk about it. I can’t explain it. I don’t have words for it.’ I understand that. We cancer dads understand this poor guy is riding our world. Even though his child is in remission, you don’t go back.

BLOOM: You mentioned that the other parents living in hospital were primarily moms. Was that isolating?

Angus Olsen:
My wife made a lot of friends because it’s usually mothers living there. Yes, I’m a very private person, and I don’t do well with counselling and things like that. I found the Facebook groups for dads far more helpful than talking to a parent in person. 

Our daughter’s social worker was invaluable to me, and certain nurses were very comforting. Her surgeon was very good to me as well. So I did have people. But with the urgency of what was happening, and the reality that she could die today, it was too much. I couldn’t leave her bedside to sit down with another parent.

Wednesday, November 7, 2018

'Learn from each other's heart' is cartoonist's message

Illustrations ©Graphic Universe™, a division of Lerner Publishing Group

By Louise Kinross 

My Beijing: Four Stories of Everyday Wonder is a magical watercolour children's book by Chinese master cartoonist Nie Jun.

This is how Kirkus Reviews described the book:

"A young Chinese girl and her grandpa navigate life's challenges and joys in a small neighourhood [known as a hutong] of Beijing. In this graphic-short story collection, the author introduces readers to Yu'er, a girl with an unspecified physical disability that limits her mobility, and her loving grandfather.

"The first story opens with her dream of becoming a champion swimmer and a belief strong enough to carry her above her naysayers. From there, readers meet a boy who helps her fight off bullies, encounter the fantastical properties of an old mailbox, and finish by witnessing Yu'er's reconciliation with a grumpy neighbour."

The Lerner Publishing Group had BLOOM's questions translated into Chinese, so that Nie Jun could answer them. His responses were then translated back into English. My Beijing is Nie Jun's first book published in English. We are thrilled to bring you his words.

BLOOM: How did you get the idea to include a character with a disability?

Nie Jun: In this book, Yu'er is very brave and self-confident. Her biggest difficulty in achieving her dream is her disability. But such a situation can make more people identify with her inner confidence and optimism, and also make the relationship [between] her and her grandpa warmer and more dramatic.

BLOOM: Is Yu'er based on a real person?

Nie Jun: When I was a child, I lived in a large courtyard house where many families lived. There were many children jumping up and down on the colourful roof. There was a child with physical disabilities in the neighbourhood. I remember that her mother used to take her to the street to sell small groceries. Her mother usually hid somewhere far from her and watched.

At that time, we often tried to tease the girl and deliberately anger her. Looking back now, I think her mother was training her to survive. In contrast, we so-called normal children were doing some boring things while she had already learned to face life. This memory affected my understanding of Yu'er.

BLOOM: The theme of the injustice of exclusion comes out in your bookwhether Yu'er is excluded from taking swimming lessons, or the butterfly's wing is ripped off by the bullies, or Pumpkin can't get the art buyer to see the value of his work. Did you want readers to see the fragility in all of life?

Nie Jun: There are many injustices between people. Especially when it comes to a weak person, the strong group will psychologically exclude or even expel them. This is human nature.

Based on this view, I prefer to show a peaceful way of getting along in the story. People don't show a deliberate pity or give preferential treatment to Yu'er. They don't regard her differently from others. This way of getting along makes Yu'er feel happy and makes her heart sunnier.

I also hope that everyone can see a kind of reconciliation in the story. Yu'er's beautiful swimming makes the children who once laughed at her exclaim with admiration. Yu'er is not sad because the children bully her, but she cries for the broken wings of a butterfly. Although Pumpkin can't get the art buyer to take his work, in Yu'er's eyes, he is greater than any master of art. He finds a true respect.

BLOOM: Grandpa is the hero of the story. He has endless imagination and sees the good in everyone. In Western culture, seniors are often devalued. Why did you want the hero of the story to be a senior?

Nie Jun: Grandpa is a typical old Beijing native, warm, kind, and humorous. In a Chinese family, the seniors are more willing to share their children's pressures in life, such as caring for grandchildren. This can also reduce the loneliness of the seniors. This kind of relationship makes the grandparents and the grandchildren dependent on each other, which is very normal in a Chinese family.

For example, when I was a child, my parents worked in another city for a long time. During this time, I was living with my grandpa. At the very beginning, we did not get along well. But as time went by, we became close. For me, this kind of family love is worth recreating.

BLOOM: We see Yu'er using a crutch or being pushed in a cart or carried on Grandpa's bike, but we never see her in a real wheelchair. Is there a reason?

Nie Jun: I really have to explain that: a wheelchair is very inconvenient in the old Beijing streets. The gates have high threshholds. There are also many stone steps and no elevators. That's why Yu'er usually uses a crutch.

And the cart she is pushed in is not like the cart we see in supermarkets. In Beijing, we call it "Dao Qi Lv (riding a donkey in reverse)." It's a kind of common bike with a cart in front of it, and it's very convenient. This design is more like the rest of what you see in the old street, and it makes Yu'er's life not that different from others. I hope that in the eyes of readers, she is a very cute and ordinary little girl who grew up in a hutong.

BLOOM: At the end, Pumpkin gets a second lease on life when he begins teaching Yu'er how to paint. What do you learn from your students?

Nie Jun: I am now working as a visiting teacher at the Beijing Film Academy every Tuesday afternoon. Mainly I discuss the creation of comic stories with my students, from how to write a scenario at the beginning, to how to finish the whole work.

In the process, I've learned that a creator should never discard curiosity about the unknown world, even if your guess is very wild or might disappoint you when you contrast it with the real world. As you mature and your knowledge increases, you will find the difference between your imagination and reality becomes smaller and smaller. It may be a good thing, but it also means that a creator can become more cautious.

So maybe the most precious thing for a creator is always keeping a childlike curiosity. Just like what Pumpkin said when he saw Yu'er's work, it has a moving, innocent power.

BLOOM: What ideas about disability do you hope children take from the book?

Nie Jun: An equal relationship is the most important thing. Do not treat people with disabilities with exclusion or pity. Step past your differences, learn from each other's heart.

BLOOM: As this is your first book in English, what ideas about China do you hope readers take away?

Nie Jun: I am very happy to have the opportunity to publish the book in English. I haven't been to America or Canada yet, but it makes me feel so excited that my work can be seen by more people (and special thanks to my agent, Mr. Wang Ning, who has given me a lot of help in these years).

Although we are in different cultures, I believe that readers could feel lots of common emotions from the story, and I hope people who read this book could have a chance to visit China. Beijing is a city full of stories; it has a long history but is also developing rapidly. For this reason, the values and living standards of people here are making interesting changes. But I hope that through the story of an ordinary family in the old street, we can see those unchanging feelings and love for dreams.

Thursday, November 1, 2018

Earning child, parent trust is job number 1 for surgeon

Photos and interview By Louise Kinross

Dr. Unni Narayanan (above left) is a pediatric orthopedic surgeon at the Hospital for Sick Children who sees patients at Holland Bloorview while they do their rehab here. Dr. Narayanan went to Madras Medical College in India and trained as a resident at the University of Minnesota. This included a rotation, and then an extra fellowship year, at Gillette Children's Specialty Healthcare in
 St. Paul, which is a leader in care for children with cerebral palsy. Much of his time at SickKids is spent teaching fellows and residents. 

A number of parents suggested Dr. Narayanan would make a great interview. One of these, Samadhi Mora Severino, explains why Dr. Narayanan stands out: "What I adore about him is how humble he is and how attentive he has been with Kian (above right). Kian is partially verbal but he makes all the effort in the world to engage with him. I remember when we were doing serial casting, he was wrapping the cast around Kian's leg so they could count together. Not all physicians can bond with children with severe disabilities. Kian feels safe around him and loved by him. Kian has made it clear that he wants to be a doctor one day, and I know Dr. N is his role model."

BLOOM: How did you get into the field?

Dr. Unni Narayanan:
There are no medical people in my family, but I remember being interested in a career in medicine. I went to medical school in India from 1982 to 1987. At that time, people had blinders on, and a successful career meant being a doctor or an engineer.

Early on, I realized two things: I wanted to do surgery, and I wanted it to be a pediatric specialty. Some of the role models I saw were very caring individuals. It appealed to me—not just in terms of the surgical technical skills—but the complexities of working with children posed an extra set of challenges.

As a foreign medical graduate I was lucky to get a position at the University of Minnesota, and they had a very strong pediatric orthopedic program within the residency. It was their expertise and devotion to kids with cerebral palsy (CP) that greatly influenced what I did.

BLOOM: Of all the things you could do as a doctor, why surgery?

Dr. Unni Narayanan:
The ability to see changes—that you’re actually affecting change in a very real way by altering the anatomy. But I think to a great extent it’s who your teachers are.

BLOOM: What types of surgeries do you do now?

Dr. Unni Narayanan:
The major focus of my practice is cerebral palsy and broadly speaking there are two kinds of patients.

The first are kids who are able to walk, albeit with some difficulties. We do operations on them to help them walk better—walk further, faster and less inefficiently, so they have less pain, and can be more independent.

The second category is very different. These are kids who are more severely involved, who rely on a wheelchair for mobility and depend a great deal on a parent or carer to look after most activities of daily living.

The operations we do for these kids are focused on achieving one of the following goals: To prevent pain, if there’s a concern pain is likely in the future, or to relieve pain; to make it easier for parents to look after these kids; and to improve the kids’ health. All of these goals combine together to improve and preserve quality of life.

BLOOM: What is a typical day for you like?

Dr. Unni Narayanan:
The first category of operations is focused on gait-related goals. They tend to be everything from simple, short procedures isolated to one leg or just the foot or ankle, all the way to surgery at multiple levels at the hips, knees, thighs, lower legs and foot and ankle—so several operations done concurrently over the course of the entire day, and the child could be asleep for six to nine hours.

Our operations with our more involved patients are almost invariably long operations. They focus on the reconstruction of hips. Many of these kids have hips that tend to slide out of place and, in doing so, will create pain—if not now, then in the future. Or they may have contractures, where the muscles are too short around the hip, which make it very difficult to diaper and dress them and position them. These are complex operations to put legs back in place or to release and lengthen tight muscles. For different reasons they are big operations that can last seven to nine hours.

BLOOM: How do you stand for so long?

Dr. Unni Narayanan:
There are lots of occupations that require people to stand on their feet. If you’re serving coffee at Tim Horton’s, it's tiring at the end of the day. That’s where the training and repetition comes into these operations. And they are not done single-handedly. There’s a whole team involved.

First, there's the anesthesiologist, who is crucial not only to keeping the kids asleep, but instrumental in reducing the pain they’re likely to have after the operation by putting in epidurals and blocks. We have nurses who are really skilled at facilitating the procedure in terms of having equipment ready and helping with technical aspects. In the operating room I am fortunate to work at SickKids because I have the assistance of a fellow and a resident. The fellow is a qualified orthopedic surgeon—someone who is doing what I did 20 years ago.

The fellows need opportunities to do parts of the operation, but it has to be done under supervision, with me taking full and primary responsibility that the quality of what is done is as good as it can be. Usually at about mid-day I give my residents a break to get some lunch.

BLOOM: But you don’t take one?

Dr. Unni Narayanan:
No. But that’s only because I’m not a lunch person. Some operations may take a lot more than 12 hours. For those types of operations we have to take a break, and we let parents know that will happen. The children remain safely asleep in a sterile area.

BLOOM: What are the joys of the job?

Dr. Unni Narayanan:
It’s quite a privilege to work with kids. My research interest is in trying to understand whether what we and others are doing is making a meaningful difference to their lives. When you see evidence of that, reported in ways that are more than just the technical difference—the hip is in—that’s very gratifying.

It may be that the child had pain before and that’s gone away, or the parent couldn’t dress them before, and now it’s easier. Or in the case of a child we are trying to help to walk better—is that translating into less tripping and falling, less pain, walking longer distances, and participating more with friends and in recreation or sports?

We’re working with two patients: the child and the parent. I can only imagine, and even that would be difficult, to put myself in the position of a parent who’s giving up full control of a child to someone for an extended period of time where invasive things are happening. To allow that to happen to your child requires me to have empathy for parents, and to engender the kind of trust that I have to earn. The entire process where you get to know a family and the child, and earn that trust over time, till a day comes where an operation is imminent, makes my work life gratifying.

BLOOM: What are the challenges of the job?

Dr. Unni Narayanan:
In a condition like CP, understanding that one, we have no cure for CP, we can’t fix CP. A child with CP before the operation has CP after the operation. Recognizing that is important to me, but also how we communicate that to families over time, for them to understand, is not easy.

The primary problem is in the brain, not in the muscles and the bones, which is where I’m working. I’m working on the periphery, quite far away from the primary problem. I have to appreciate that the kind of changes we’re making, while they might be very helpful and go a long way to having a positive impact on children, may not entirely be at the level of what the parents’ hopes are.

That humility of understanding what the extent of our interventions can do, and communicating that, is a challenge, because, of course, parents have expectations that come from hopes, which are inevitable and understandable. It’s negotiating that.

BLOOM: Yes, I’m sure that parents have to grow into that kind of understanding of what the limits are.

Dr. Unni Narayanan:
It doesn’t happen in one conversation, no matter how receptive a parent might be. It’s my responsibility to do it in an empathetic way, and in a way that doesn’t dash a parent’s hope—hope is an incredibly powerful mechanism to help families cope.

It’s also important to understand the perspective of the child. We’ve found that parents ascribe a certain level of concern about functioning that is consistently greater than what the child ascribes. Parents tend to make comparisons with their other children who don’t have CP, or with the child’s peers. Parents don’t live with the condition in their bodies, so their sense is that it might be worse than what the child [reports].

We need to understand the perspective of the child and the parents, and align our goals to take them both into consideration. These are not 10-minute appointments. They can take the better part of an hour.

BLOOM: How do you find the time?

Dr. Unni Narayanan:
For new patients, we build that into the appointment, but the reality is I keep a lot of patients waiting in my clinic. I hope they realize, my apologies notwithstanding, that I’ve had to take longer than anticipated to have a difficult, complicated discussion and, having waited, they will also have that time when they need it.

Another challenge is that parents have access to all kinds of information from different sources—which is a good thing. They do their own homework and research, which allows them to ask questions.

However, sometimes they’re exposed to information that may not be well vetted and evidence-based. Yet it’s appealing, because large promises are made, which play to the vulnerability of their hope. They may ask how come we don’t offer certain procedures here. Is it because we don’t know what we’re doing?

These conversations can be difficult. There are unethical practices around the world, and south of the border, that take advantage of parents wanting to leave no stone unturned. And of course that is a completely appropriate sentiment. Why wouldn’t a parent want to explore everything possible? So how can I share information so that they trust what I’m saying, and I don’t leave them wondering could it be better somewhere else?

BLOOM: What emotions come with the job?

Dr. Unni Narayanan:
As a health-care professional, empathy is essential. I enjoy interacting with the kids. I take great pleasure in getting them to crack a smile. If I have to do big operations on them they have every reason not to be happy with me. But I try to establish a rapport with them and have them not be afraid of me. We try to make it a less anxiety-ridden experience: having a sense of humour, teasing them and finding a way to make them laugh.

Another challenge is the operation on its own is insufficient, without the kind of support and therapy and rehab required to make operations work at the end of the day. For that we are extremely lucky to be a publicly funded health-care system. That allows us to have kids spend up to three months at Holland Bloorview for free, where they can get therapy every day and not miss a day of school. Those kind of supports are just not available anywhere else in the world.

BLOOM: What about emotions you experience when an operation doesn’t go as you planned?

Dr. Unni Narayanan:
I’ve heard some surgeons say ‘Would you rather be a compassionate surgeon or a competent one?’ You should be both. If something goes wrong, I genuinely feel badly about it, and I need to communicate that to the family. If I think I have contributed to that, I have to say I’m sorry. I’m responsible, and with that responsibility comes a level of caring—not only to take joy from when things go right—but feeling everything from regret to feeling sad or bad that something hasn’t gone right. Fortunately, that happens infrequently.

BLOOM: How do you help your fellows cope when things don’t go as planned?

Dr. Unni Narayanan:
By being a role model. When something has gone wrong, they know it, and pretending it hasn’t gone wrong, or that it went wrong because of this and not that, causes you to lose credibility. Role modelling to the fellows to be honest. Saying ‘This is where we could have done better, where we made a decision, in retrospect, which was the wrong one.’

I need to walk the walk when I’m communicating with families, so that my fellows see that, and hopefully will incorporate it into their practice. By the way, there’s no one single way to be a good communicator, or to show empathy. Everyone has their own skill set, and their own personality, that they draw on.

BLOOM: You said earlier that humility is an important quality.

Dr. Unni Narayanan:
Yes. But at the same time, we can’t hide behind humility for failures to do things properly in order to prepare for a complex operation. If something goes wrong, or is unexpected, it is despite that planning, not because we didn’t do the thoughtful planning ahead of time.

It’s my job as a teacher to model to my fellows and residents ‘these are the things I’m thinking about in how we came to the decision to go ahead. Here are the different things I’ve done to ensure when we go to the operating room, we will not be surprised, because we have thought about all of the different steps we may have to take if we encounter an unusual situation.’

Nine out of 10 times there’s a particular sequence of steps you will follow. In one of every 10 children, you’ll encounter something different about the child’s anatomy, or the way the child is presenting. How do you recognize that, and how do you make decisions intraoperatively? The more thought you’ve put into it ahead of time, it won’t come as a surprise. If we know something may happen, we will have backup plans. We shouldn’t ever say that something didn’t work out because we didn’t think about it ahead of time, and do our due diligence.

BLOOM: How do you manage stress?

Dr. Unni Narayanan: I don't have any particular strategy to manage stress, but then I wouldn't describe stress as defining much of my work or personal life, beyond the average dose one expects. I play tennis for fun, and enjoy traveling and many other things with my wife, now that we are almost empty nesters. 

BLOOM: You direct a fellowship program in orthopedic surgery.

Dr. Unni Narayanan:
One of the privileges of working at SickKids and Bloorview is that the fellows keep us accountable and fresh. They’re constantly asking questions: 'Why, why, why?'

BLOOM: What do you look for in terms of applicants?

Dr. Unni Narayanan:
I have the privilege of going through 100-plus applications from around the world. I’m looking for clearly a track record supported by letters of recommendation and a CV and some sense from the personal statement about what his or her interests are in the future. We’d like to think we’re training the next generation of pediatric orthopedic surgeons and researchers who can be ambassadors.

Right now we have two fellows from the U.S., two from the U.K. and one from Portugal. Each year, we choose two from North America, and three from other parts of the world. Once I’ve created a short list, we do in-person and telephone interviews. When we do telephone interviews, five of my colleagues and I will have interviewed them, and we have a rating system.

BLOOM: But if two candidates look excellent on paper, is there something you look for in terms of their personality?

Dr. Unni Narayanan:
The question is, how do you find that out in a single meeting, or in a telephone interview? I think we all imagine we can, and we do our best.

All things being equal, we look for diversity. For example, we recognize that last year we had no women in the program. This year we have three.

Another aspect of diversity is where they come from. Candidates who may otherwise be very qualified, but who apply from Southeast Asia or Africa or parts of South America, are at a huge disadvantage.

It’s harder to vet their applications because their health-care systems may be different from ours. I’m very proud to be a member of a division where my colleagues accept that from time to time, we need to take a chance on someone who looks good. I grew up in India and trained there, and if someone in the states hadn’t given me a chance 26 or 27 years ago, I wouldn’t be here.

BLOOM: If you could change one thing about our children’s health system, what would it be?

Dr. Unni Narayanan:
Working with kids with CP is not merely surgical. We work very closely with our developmental pediatricians and physios and other therapists throughout their continuum of care.

The big black hole is when they graduate, when they get to this arbitrary age of 18 or 19. What then? We have in place less than perfect ways for them to continue to get some oversight with our physical medicine and rehab counterparts who look after adults. But there simply isn’t, within the system, a critical mass of adult providers who have the expertise, and/or the experience, or the interest in providing care for adults with CP.

BLOOM: I don’t see this being addressed systemically. What might be a solution?

Dr. Unni Narayanan:
There are different models and I don’t think any single model may work. We may have to have a multi-pronged way.

One is for us to get rid of this notion that SickKids and Holland Bloorview are pediatric institutions. For certain conditions that have their onset in childhood and are chronic, the system should continue to support the hospital to follow the patient across the lifespan.

At a higher level, the policy makers and Ministry of Health, in collaboration with us, should say that for certain childhood onset chronic conditions, we will make an exception to continue care. So rather than have Sunnybrook do a surgery for an adult, we will enable SickKids to do it.

Another idea is to have the system identify three or four providers who may have a niche interest in this population, and we would work with them. So perhaps I come to the adult institution because I know how to do this operation, and I need to get the privileges and time to do that. Or can we provide you with the operating room time at SickKids, because we are better equipped in taking care of the entire patient—we understand the other things that go alone with the condition.

BLOOM: What is it like working across two hospitals?

Dr. Unni Narayanan:
We have two institutions—SickKids and Holland Bloorview—that work to complement each other. Most rehab in other places is done at a children’s hospital. We’re very lucky that it’s separated.

I much prefer seeing patients with CP and other chronic conditions at Bloorview, because I have more time there, and it’s designed and built to accommodate children in wheelchairs. Hopefully the clinics in SickKids’ new building will be friendlier to wheelchair access. Right now, our examination tables don’t go up and down, and there are no lifts, so it really isn’t designed for kids with chronic conditions.

BLOOM: If you could give yourself advice on your first day, with the experience you have now, what would it be?

Dr. Unni Narayanan:
Stick with it, because you’re going to be very happy doing what you’re doing. I’ve been very lucky, either by accident or design. I stumbled onto a sub-specialty I love, and an environment that is so supportive, that allows me to do what I’m doing. I have to pinch myself doing what I’m doing. And the kind of colleagues I have at Bloorview—with Darcy and Golda and my physio colleagues—and at SickKids, they are hugely influential mentors. I would not change anything.

Friday, October 26, 2018

Lived experience 'helps me go to the darker places with families'

By Louise Kinross

Holland Bloorview social worker Val Lusted has spent almost 20 years working with youth with brain injuries caused by illness or trauma, and those hospitalized for rehab after bone surgeries or spinal-cord injury. Of course, that also meant working with parents who were under extraordinary stress and emotional upheaval. Val has always been a dear friend of mine, and I recall several times when, at my urging, she stepped out of her comfort zone to do live TV interviews about brain injury on behalf of Holland Bloorview. Thanks Val! With Val retiring next week, we took a trip down memory lane.

BLOOM: How did you get into the field?

Val Lusted:
I knew I wanted to be in the helping professions during my high school years. I just had a sense that my personality was such that I liked and enjoyed being in a helper role.

BLOOM: I understand your first job here was in a different capacity?

Val Lusted:
When I was in my undergrad at Ryerson, I had a part-time job as a therapeutic recreation staff at what was then the Bloorview Children’s Hospital. Back then it was a chronic-care hospital, and I worked on the weekends. I ran different programs for adolescents. One was a baking group to help the kids work on their fine motor skills. I remember one day we were trying to bake bread and we didn’t allow enough time in between to let it rise, and the bread came out only a couple of inches high. We also took the kids swimming in the pool. I had my F-class licence so I drove the Bloorview van when we’d take the kids to Fairview Mall to practise independence.

They knew I was studying to become a social worker, and they informally shared that they didn’t have a lot of respect for the profession. I think they felt abandoned by their families at this chronic-care institution, and they didn’t feel that their social worker had leveraged any other life for them.

I took it to heart as a challenge about really being able to connect with my clients down the road, so I could understand how I could best be of service to them. It didn’t dissuade me from my professional path, but it highlighted for me that it wasn’t going to always be easy to engage clients in a meaningful way.

BLOOM: What areas of the hospital did you work in as a social worker?

Val Lusted:
For 15 years I was with the family support service, working with adults over age 16 with acquired brain injuries in the community. It was a very tight community and a very unique setting to be able to go into people’s homes or schools or places of work to help them carve out new meaning after rehab discharge. When that program ended, it was a real loss to me and my identity. For the last four years I’ve worked with inpatients and day-patients on the SODR unit.

BLOOM: What is a typical day like now?

Val Lusted:
One of my primary roles is to chair family team meetings, to offer pre-admission orientations to families, and to provide individual counselling sessions, often for parents at the bedside around caregiver coping. Occasionally I also work with the teens. The other general function is offering various groups and workshops for clients and parents.

BLOOM: What were the joys of your work back on the family support service team, and now?

Val Lusted:
In the family support service you could establish a really intimate relationship, because you had the privilege of coming into people’s natural environments. It’s also a different lens when you offer psycho-social support by following people over a long period of time.

On SODR, I work with some clients with pre-existing disabilities, and some who have new diagnoses or traumas. The joy for me is being able to walk that part of the journey with them. They often come in to the unit shell-shocked and overwhelmed, and some start to feel trust in the therapy team as they progress through rehab and they start to explore what I call their new normal. I would be lying if I said everyone walked out emotionally well-adjusted to their current state, so I seek out other support in the community for their journey after discharge.

I want to give a shout-out to the SODR team. It’s a very busy unit with high volumes and increasing complexity of children’s medical, therapy and psychosocial needs. It’s a very dedicated team of clinicians and being able to witness true collaboration in working with these complex demands is also a joy.

BLOOM: What were the greatest challenges of each area?

Val Lusted:
On the community-based side it was the traffic [laughs]. As the service delivery model changed, when they brought in centralized scheduling, the clinician lost some of their autonomy at being able to manage their caseload priorities and appointments. They were evaluating the usefulness of the service based on a clinic model with productivity targets.

On SODR, I would say the challenge is the volume and complexity of clients vis-à-vis the existing psycho-social resources. 

BLOOM: What emotions come with the job?

Val Lusted:
Inspiration, gratitude, humility and kindness. There is also the heaviness of the work—call it vicarious trauma if you will. Sometimes feeling overwhelmed, sometimes feeling powerless, sometimes feeling frustrated—more with systems gaps than with the client or families themselves.

BLOOM: How do you manage the heavy emotions?

Val Lusted:
I try to practise work-life balance, some days more effectively than others. I go out with friends and family and have activities and interests with them. I have a ladies walking group in my neighbourhood. Watching my son on the ice at the hockey arena gives me joy. I’m not very good at meditation. Music is my meditation, and I have gone on a few spiritual retreats. These aren’t religious. I’m seeking out a more grounded spiritual connection, most of which is my church is nature, time in nature.

BLOOM: Nature is healing. Have your ideas about disability evolved over the years?

Val Lusted:
I have a personal, lived experience with the world of disability related to my husband Rick, who has been a quadriplegic for many years. I also have a son who’s adopted who has some invisible disabilities. I would say that those two have been my greatest teachers. 

That lived experience helps me be more compassionate, and it helps me to go to the darker places with families. Families need a safe place to go deeper. Some clinicians choose to stay at the surface out of self-protection, in my view, but it’s also a function of the faster pace of the work. If you have to see a client and get on to the next one in 35 minutes or less, you can’t open a can of emotional worms because you won’t have time to process it.

BLOOM: What have you learned from families?

Val Lusted:
Resilience, in a word. The families that are able to explore their inner strengths, as well as their ability to reach out for help from others when needed, are the families that model resilience every day for me.

BLOOM: If you could change one thing about rehab for children, what would it be?

Val Lusted:
It’s a metaphor—the mushroom needs to be turned upside down. It means the funding needs to be more adequately allocated to the community side of life, in order to support a longer-term rehab journey within a natural environment.

The other thing I’ve been thinking about a lot is that when the disability world can touch the mainstream world, that’s when we’re going to change the world, and create real opportunities for inclusion and belongingness. Instead of communicating to the converted, we have to educate people out there. The Dear Everybody campaign, if we can get that out in the mainstream, is a fabulous initiative.

BLOOM: What skills does someone need in your role?

Val Lusted:
I think I started off as an optimistic person, and as I matured and gained various professional and lived experiences that touched the world of disability, I think of myself more as a realistic optimistic.

BLOOM: Do you mean that initially you were somewhat naïve?

Val Lusted:
Yes. Green and naïve. 

As a clinician, you also need to be able to read and respond to the intense emotions of others, while being self-aware and reflective about how the work is impacting you, and being able to prioritize. There’s a certain level of flexibility and pragmatism that’s needed, and an ability to network and collaborate with others—both informally and formally.

Thursday, October 25, 2018

Meet Karmzah, a heroine with cerebral palsy and super powers

By Louise Kinross

Farida Bedwei is a Ghanaian software engineer who's launching a new comic book with a super hero who has a disability.
 Farida, who has cerebral palsy, loved comics as a child, but never saw any characters who looked like her. So she created Karmzah, a no-nonsense warrior whose crutches give her the power to fight, run, flip and fly. Karmzah will be available online on the Afrocomix app in the Google Play store at the end of October. Farida is on business in Paris, and we spoke over Skype.

BLOOM: How did you get the idea for Karmzah?

Farida Bedwei:
I realized there wasn’t representation for super heroes with cerebral palsy. There are a few super heroes who have disabilities. But there are a lot of children and adults who don’t see their disability represented in the world of cartoons and comics. That’s why I decided to come up with this super hero. Growing up, I used to love the comics, but I never felt represented. So I decided to do something about it.

BLOOM: What do you hope readers take away from the comic about disability?

Farida Bedwei:
For me, the most important thing is that having a disability doesn’t mean that that is your whole life. We tend to focus too much on what the person can’t do, and miss out on what the person can do.

For most of us with disabilities, we are going to have the disability our whole life, so we have to redefine the way we look at it, and make the best out of it and live our lives to the fullest.

Sometimes we tend to end up resenting our wheelchair or our other aids, because we feel they make us different from any other person. But these devices help us get the independence that we crave, so I made a super hero who gets her power from her crutches. Without her crutches, she loses her power, and becomes like anyone else with cerebral palsy.

I want children to learn how to take pride in the assistive devices they’re using, and not see them as something that is making their lives miserable.

BLOOM: How was disability viewed in Ghana when you grew up?

Farida Bedwei:
There was a stigma about it, and there still is. We are very religious in Ghana, and when it comes to children who are born differently, people immediately attribute it to either a curse, or to something that your ancestors or your parents did wrong. That is a mindset that we have to change.

There are people who allow the perceptions of a society to affect their lives, but I’m not one of them. I didn’t let those things bother me.

BLOOM: Was it hard to sell other people on your idea about a disabled super hero?

Farida Bedwei:
No, it’s something people have waited for. People are literally asking ‘When is it going to come out?’ because they want to buy it. These are not just people with disabilities or parents of children with disabilities. But people with no relation to disability who are interested in it, and say it’s about time.

I ran into Eyram Tawiah, the CEO of a local comic book and animation studio called Leti Arts at an event in August. We got talking, and I told him about this idea for a comic I had. That is how Karmzah came about, less than two months later.

BLOOM: Who illustrates the book?

Farida Bedwei:
It’s done by Leti Arts. I wrote the script and the dialogue, and they do the illustrations based on my scripts.

BLOOM: Was it challenging to have someone else draw your characters?

Farida Bedwei:
It was very easy. We have the same mindset, and they are able to make my vision come alive in a great way.

BLOOM: When is the first issue coming out?

Farida Bedwei:
It will be available online next week in the Afrocomix app in the Google Play store. The print copy will be ready to be purchased in Ghana in the middle of December. Next year people will be able to purchase the print copy from other parts of the world.

BLOOM: I understand you are a software engineer and the co-owner of Logiciel, which sells a microfinance banking software used by over 200 financial companies in Ghana?

Farida Bedwei:
Yes. These companies are smaller than banks, and give loans and financial services to people who run small businesses or don't have a steady income, and who don't qualify for loans from banks.

BLOOM: Do any of your skills as a software engineer lend themselves to launching a new comic book?

Farida Bedwei:
No, they are two different areas of my life. They don’t intersect at all.

BLOOM: So is working on your comic book a bit of a reprieve?

Farida Bedwei:
Yes. It’s something totally different. It gives me a lot of satisfaction that my life isn’t just about writing code. Sometimes you need to add something to make your life more exciting.

BLOOM: How often will the comic come out?

Farida Bedwei:
We are planning on four issues every year.

BLOOM: Would you say Karmzah’s personality is like yours?

Farida Bedwei:
I don’t know. I guess someone who knows me would be a better person to answer that. I try not to write about myself, but I guess eventually you end up adding a bit of yourself. Karmzah is a no-nonsense person who solves problems and fights bad guys.

BLOOM: What advice would you give parents raising children with a wide range of disabilities?

Farida Bedwei:
I would tell them to treat their child as normally as possible, because although the child has a disability, the child is a child first. Enjoy them. We all want the same thing: we want to be loved and we want to feel that we can achieve anything in the world. As much as you can, give your child the freedom to be who he or she wants to be.