In Baby and Me, parents craft a lullaby for hospitalized infant

By Louise Kinross

When a child is born premature or with serious medical problems, parents’ plans go out the window. Instead of getting to know each other in the relaxed and quiet safety of their home, parents sit at a hospital crib, unsure of how to interact with the newborn beneath the wires and noisy equipment.

While their baby is in intensive care or rehab, parents may miss some of the most basic bonding experiences.

For example, a mother attending Holland Bloorview’s new Baby and Me program, noted that when she lay down beside her child on a mattress in the program, it was the first time she’d ever snuggled in bed with her baby. The baby was seven months old.

One morning a week, inpatient babies up to 18 months and their moms or dads meet in Holland Bloorview’s music therapy room for 45 minutes of creative arts psychotherapy, which includes art- and music-making.

“We started the group to facilitate creative and playful opportunities between caregiver and child,” says Eunice Kang, a registered psychotherapist and music therapist at Holland Bloorview. “We offer a means of coping with trauma and help parents connect to their infants through song writing and creating art. It’s an opportunity to stop and take stock of their journey so far—to talk about the difficulties and celebrate the achievements.”

The session begins with parents playing soothing bells of different pitches. They then choose to compose a personal lullaby for their child, called a "song of kin," or paint and decorate a piece of canvas to honour their baby.

Eunice and Andrea Lamont, also a registered psychotherapist and music therapist, learned the "song of kin" technique from Dr. Joanne Loewy. Last year they attended Dr. Loewy's continuing education program in the neonatal intensive care unit at Mount Sinai Hospital in New York City. They then worked with Shawna Perkins, Holland Bloorview's therapeutic playroom coordinator and art therapist, to adapt the techniques for the growing number of infant patients we see here.

For the lullaby, parents are asked to choose a favourite family song, then work with Eunice and Andrea to create meaningful lyrics for their child. “The baby has experienced a lot of stress being in new hospital environments, and we know that listening to Mommy or Daddy sing to them will help the baby regulate their emotions and bond,” Eunice says. “While we’re making the lullaby, we listen to the family’s concerns and issues. It’s a quiet time, with no beeping alarm sounds or interruptions, that can also be emotional and cathartic for parents.”

In addition to the lullaby, parents and babies work on their art canvas with Shawna, adding patterns and textures and photos of the baby. At the end, Shawna takes a picture of the child and superimposes it on the canvas, adding the lyrics from the family's lullaby as a border.

The facilitators play instruments to accompany parents singing their lullabies. “With their consent, we record the lullaby and send it to their e-mail or phone,” Eunice says. “Some of the families tell us they cry the first time they hear it, and they cherish the moment they share it with the baby.”

For more information on the Baby and Me program for inpatients, please contact Shawna Perkins at ext. 6268. This project is funded by donors through Holland Bloorview Kids Rehabilitation Foundation.

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Sharing work 'wounds' helps nurses prioritize their own self-care

By Louise Kinross

A six week narrative group for inpatient nurses at Holland Bloorview increased nurses' empathy for their own emotional reactions to working with children after painful bone surgeries or life changing trauma, and their families, according to a study published in The Journal of Pediatric Nursing last month.

BLOOM reported earlier on how the narrative training increased empathy for patients and families and for the nursing team.

This piece looks at how the six, 90-minute sessions of writing, drawing and talking about their own nursing stories elicited greater self-compassion in nurses. Participants were able to share work-related emotional wounds they had sometimes carried for decades.

Knowing they were not alone in experiencing emotions like grief and regret allowed them to let go of what they called medicine's "myth of perfection," and to recognize that to provide the best care, they must first care for their emotional and physical wellbeing.

Each 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, 'In a three-panel comic, tell the story of a patient through their parents' eyes.' Participants then discussed and shared their work.

In the study, empathy is defined 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 worked with children hospitalized at Holland Bloorview following painful bone surgeries or life-changing trauma, such as traumatic brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group.

Prior to the intervention, nurses said little about self-empathy, and instead spoke about efforts to control or hide emotions like grief, regret or guilt. "I'm still learning and trying to control my emotions," said one. "If I can just not...freak out right away." They also expressed an intense desire to avoid failure. "I need to learn to...try not to take it personally, but you do. Because you feel like it's your fault, even though it's not."

Their efforts to cope with stress were often reactive, and didn't involve seeking out nursing peers. For example, "I would go myself and cry in one of the rooms."

In addition, they regularly described struggling to absorb difficult or abusive behaviours in patients, parents, and co-workers. "You want to be able to stand up for yourself, but it's hard to figure out that line with family-centred care," said one. "Professionally too, right?"

After the narrative group, many nurses said it was the first time in their career they'd been able to talk about emotional wounds from traumatic work incidents. "It happened like 17 years ago," said one. "You don't realize sometimes that you haven't totally resolved something." And: "[The intervention was] like therapy on a whole different kind of level."

Hearing that all nurses make mistakes and experience challenging emotions led them to let go of the pretense of perfection, and to be more comfortable with ambiguity. "Not being so scared to tell them I don't know... because we don't have all the answers," is how one described the change.

After the group, nurses stressed the need to proactively take care of themselves. "It means not overworking your body, like not working more hours than you're physically capable of, making sure you take your breaks at work, making sure you've made time to do fun things outside of work."

They were less likely to fixate on mistakes, acknowledging the need for humility and self-compassion. "Not being so upset with myself when things don't go right," said one. "[The intervention] confirmed that it's okay if I don't know, because not everyone knows everything either," said another. "I can see how that shift happened throughout the weeks."

After the group, participants were more likely to reflect creatively on mistakes and figure out how to do something differently the next time, and to approach, rather than avoid, emotionally charged family situations. 

One theme that only surfaced after the group was pride in nursing. "The once-a-week [intervention] really brings you back to the purpose of my role..." said one. Sharing stories that revealed the profound influence nurses have on patients and families boosted their confidence. "I felt good about myself being a nurse being part of the group...because it gives me in-depth thinking of... how much we are doing right, like in terms of client care."

Many were reminded of why they became nurses in the first place. "I'm impacting people's lives," said one. "I think we forget how much we do here. Just talking about it, listening to the other staff's experiences here and elsewhere, it makes you realize how important your role is." 

This study was funded by a Catalyst Grant from the Bloorview Research Institute. The lead investigator was Keith Adamson, then collaborative practice director at Holland Bloorview. Also on the team was Sonia Sengsavang, a PhD candidate in developmental psychology from Laurier University and Michelle Balkaran, a nurse who is now an interim operations manager at Holland Bloorview. The three facilitators were Andrea Charise and Shelley Wall, both professors at the University of Toronto, and BLOOM editor Louise Kinross, who is also the parent of a son who has been an inpatient at Holland Bloorview. 

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When Bay Luu isn't caring for her grandson, she's exercising

By Louise Kinross

On Friday I looked out my window at Holland Bloorview and saw Bay Luu, 73, pushing her grandson Nicholas, 17, in a wheelchair. A little later I glanced out and Bay was on her own, doing an aerobic step routine on the basketball court—minus the step. After that she did yoga poses and stretches, including sitting on the tarmac with her legs stretched out like a ballerina, and her head, chest and arms touching the ground. Bay has been sleeping here at Holland Bloorview with her grandson Nicholas, who has a brain anomaly called pachygyria, and is recovering from orthopedic surgery. I wanted to find out how Bay incorporates exercise into her days at the hospital, and how it helps her care for her grandson.

While talking to her, I learned Bay and her family spent a perilous 11 days in a fishing boat sailing from Saigon to Malaysia in 1976, after being stripped of their house, store and belongings during the 1975 Communist take-over of South Vietnam. Prior to their escape, Bay's husband Thanh was sent to a remote labour camp while she and her children lived for months with other families in a church and school. "If the Communists had caught us I would have pushed the children into the sea, then jumped myself," Bay told The Ottawa Citizen in a story about her family in 1978 (see photo at the bottom). The year before they arrived in Ottawa as refugees.

BLOOM: Tell us a bit about Nicholas?

Bay Luu: He doesn’t talk, but he walks a little. He understands everything. He will shake or nod his head if you ask him a question, or use sign language or facial expressions. At home he goes to school. I live with my daughter Hanh’s family, so that his parents can go to work during the day. Nicholas loves Thomas the Train. His dad has bought him the whole set. He likes to go to the computer and search for information on each of the characters. When he was diagnosed, the doctor said he was one in a million.

BLOOM: How long have you been living with Nicholas’s family?

Bay Luu: It will be 18 years in January. After we found out Nicholas would have special needs, we sold our house in Ottawa and I came here to help. My husband stayed near Perth, because he doesn’t like the city.

BLOOM: What is your routine at home?

Bay Luu: In the morning I wake Nicholas up at 6 o’clock and help him go to the washroom and brush his teeth and we go down for breakfast. I pack him a lunch. He likes little bits of French toast he can eat by himself, and two yogurt bottles. In the morning I make him oatmeal. At 7:30 the bus comes to pick him up. Then I go for a walk. I come back at around 12 or 1 and cook something. I cook his dinner for a long time so it’s chunky, but very soft. I chop the carrots and the chicken small, and cook them with rice and chicken broth. He comes home at 3:15. At 3:30 he does half an hour of exercise on the elliptical in our basement. That’s when I do my stretches. Then he has oatmeal and a bath and his dinner. We stretch his legs in braces for about an hour-and-a-half in the evening. He goes to sleep at 8:30 when he’s at school. He sleeps with me. 

BLOOM: Does he sleep through the night?

Bay Luu: Yes, he sleeps well.

BLOOM: I know children with his condition sometimes have seizures.

Bay Luu: We are very lucky and he’s had no seizures.

BLOOM: What is your exercise routine at Holland Bloorview?

Bay Luu: I get Nicholas ready in the morning and he goes to recreation at about 9:30. Then I go out to exercise. First I go upstairs to the 6th floor and I walk down to Level zero and up to 6 again, and then I go outside. I do step, stretches and yoga on the basketball court. I have about an hour and a half to exercise, so after that I may go for a walk in the ravine or walk to Metro. At 11:30 I get Nicholas and help him with his lunch. Then he relaxes on his bed with the TV or iPad. In the evening I do the stairs again. I walk up to the 6th floor, then down to level zero, and back to the third floor.

BLOOM: Why is your exercise important?

Bay Luu: I have to move, I can’t sit. I feel better and my knees are better. I used to take painkillers for arthritis, but when I exercise I don’t need to. I’m happier when I exercise. If I don’t walk for two days I feel sad. At home I walk five days a week. I also eat lots of vegetables and fruit and drink two litres of water every day. It helps me stay well and healthy, so I don’t have to take pills or be in the hospital. At my medical checkup this year I didn’t have any problems.

BLOOM: Did you have experience with disability before your grandson was born?

Bay Luu: No, no experience. No one taught me how to take care of Nicholas—by living with him you figure it out. I felt very sad, but if God gives this to you, we have to accept it. It doesn’t help to be sad or angry. I love Nicholas lots and that makes me happy.

BLOOM: How has this experience changed you?

Bay Luu: Before Nicholas was born I was busy at work. I worked for 23 years at a fast-food submarine place. Now my children are grown up and they’re okay, so I’m happy and thank God. I try to help the kids with special needs more than before. If I can help, I want to help.

That’s why I don’t go on vacation by myself. Last year I went to Singapore for one-and-a-half months and brought Nicholas.

BLOOM: By yourself?

Bay Luu: Yes. We stayed with his dad’s family who can help us. A few years ago I went to Vietnam for two months and brought Nicholas. I have a family in Vietnam. It’s hard, but I can’t leave him. I would worry about how he was and whether he’s eating the right food. I will live with him till the last day of my life.

Below Bay Luu (centre) with her husband and three of their children, who arrived as refugees in Ottawa in 1976. The photo is from a 1978 article in The Ottawa Citizen. It notes that at the time of their escape from South Vietnam, Bay's fourth child, a 20-month-old son, had a fever and was left in the care of his grandparents.

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See what a world without stigma looks like

By Louise Kinross

Check out part two of Holland Bloorview's Dear Everybody campaign, which launches today.

Last year, an open letter from children with disabilities and their families pushed readers to confront their own biases about disability and human value.

This year, the hospital's youth took control of how they appear in the ads, encouraging Canadian to rethink their perceptions of disability.

Check out our new TV ad.

Find out what a world without stigma looks like for BLOOM contributor Jadine Baldwin (above) by visiting Dear Everybody. The website includes the ad campaign as well as educational tools and resources. Read child and teen profiles. Please share images from our website on your social channels, and don't forget to tag us and use our hashtag #DearEverybody.

Shirts are back by popular demand in the hospital atrium, in our foundation office on the 5th floor or you can purchase them online.

From today through Sept. 2 you can visit us at the Toronto Eaton's Centre in the MAC Court, located on level 1 near the large fountain and Forever 21.

The creative for the campaign was donated by KBS advertising agency in Toronto.

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Storytelling bonds nurses in ways that improve care

By Louise Kinross

A six week narrative group for inpatient nurses at Holland Bloorview increased nurses' empathy for each other by unmasking their common vulnerability, according to a study published in The Journal of Pediatric Nursing last month.

BLOOM reported earlier on how the narrative training increased empathy for patients and families.

This piece looks at how the six, 90-minute sessions of writing, drawing and talking about their emotional reactions to work elicited greater compassion for each other, broke stereotypes and deepened work bonds and collaboration.

Each 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, 'In a three-panel comic, tell the story of a patient through their parents' eyes.' Participants then discussed and shared their work.

In the study,  empathy is defined 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 worked with children hospitalized at Holland Bloorview following painful bone surgeries or life-changing trauma, such as traumatic brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group.

Prior to the intervention, participants often described the nursing community negatively. For example, "When I first started I didn't really feel that supported," said one participant. "And it's a nursing culture thing that nurses eat their young." Novice and experienced nurses tended to hold stereotypes about each other. For example, "I thought of them as kind of such a hard exterior." Participants did refer to a few trusted relationships: "I have my go-to, good colleague on the floor that I can vent to."

Sharing stories, whether written or drawn, allowed nurses to see themselves in each other in a personal, unifying way: "That was me," said one. And broke stereotypes: "I was surprised...at how much they had to share and how much emotion they really have."

After the narrative group, nurses were more likely to view the nursing community in a positive, cohesive way. "Listening to what some of the other nurses were saying made me a little more empathetic to my fellow staff. Sometimes we can be hard on one another." And "This is more than just about what we're doing for families and patients. This is about the nursing staff being empathetic and caring towards one another as well, so we can come to work and do our work effectively and be in a comfortable environment." Participants reported a new recognition that to provide the best care, team members need to be "observant" and "in tune" with peers.

The study also found a change in the nurses' willingness to express vulnerability—to share work-related emotions like regret, grief and helplessness. Pre-intervention responses reflected resistance to appearing vulnerable. "I was concerned, and maybe still a little bit, sharing with the rest of the group..." said one. "You're not sure who's going to be [in the intervention] and how—what they'll say." They feared they were alone in these emotions and would be judged. Expressing vulnerability was described as a last resort, and in ways that suggested the nurse was victimized, such as leaving the room to cry alone.

Storytelling revealed the nurses' common humanity, and a new acceptance of all feelings as being "okay" and "normal" emerged. As one participant said: "The narrative intervention reinforced that you're not alone; people have those same feelings even after 30 years' experience... We cried together, we laughed together, and I didn't feel bad about it and it was okay." Many comments spoke to how sharing stories in a safe space deepened relationships among the nurses and gave them a renewed sense of respect and concern for each other.

This translated into a change in nursing practice. Before the narrative group, participants described peer collaboration as task-oriented. For example, they would help one another with a patient's toileting, medication or lifting. After the intervention, they described seeking each other out to reflect on difficult clinical situations. "Some of the poetry that we read or even the comics... really made you look at the experiences of both patients and nurses. And then to be able to talk about them after, like 'What did you think about this?'"

Participants reported being more likely to turn to each other to brainstorm, role-play and debrief in difficult clinical situations. "Before [the intervention] I would always ask what to do, [but] now I'm trying to collaborate more with my team by bringing up, 'This is what I found. This is what I think solutions can be' and talking it out. In my general practice... I have more confidence in my team and I feel less intimidated to speak to my team members."

Nurses said the intervention helped them to view challenging nursing situations more flexibly and creatively, and to be less judgmental of families, each other and themselves.

This study was funded by a Catalyst Grant from the Bloorview Research Institute. The lead investigator was Keith Adamson, then collaborative practice director at Holland Bloorview. Also on the team was Sonia Sengsavang, a PhD candidate in developmental psychology from Laurier University and Michelle Balkaran, a nurse who is now an interim operations manager at Holland Bloorview. The three facilitators were Andrea Charise and Shelley Wall, both professors at the University of Toronto, and BLOOM editor Louise Kinross, who is also the parent of a son who has been an inpatient at Holland Bloorview. 

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'Emotionally, it's a lot to see sometimes:' Rehab nurse

By Louise Kinross

Michael Maschmann is a registered practical nurse at Holland Bloorview who works with children who are hospitalized following painful bone surgeries or life-changing trauma. He came to the hospital a year ago as a Seneca College student, and was hired full-time in February. He’s recently received a number of Spotlight awards from families, like this one that starts: “Michael is a very gentle, caring nurse.” We talked about how Michael got into nursing, and how he picked up a passion for running here.

BLOOM: How did you get into this field?

Michael Maschmann: It was an experience I had when I was 12 years old. I went to SickKids to have a small operation on my kidney. My kidneys are upside down—they’re called horseshoe kidneys. But they didn’t discover that till I had a hockey injury and they gave me an ultrasound. There was a little blockage, so they wanted to put a stent in to open it up. I was in hospital for a week after the surgery, and I had two male nurses who were incredible. I was terrified to have the surgery and didn’t want to go. But by the end of the week, I didn’t want to leave the hospital.

BLOOM: What was it about these nurses that made an impact?

Michael Maschmann: They made me and my mom, who was at bedside, very comfortable. It was during the hockey playoffs, and I was a Detroit Red Wings fan and they noticed I was wearing my jersey. So they made a point to turn on the Detroit Red Wings game one night. I was shy, but they got me out of my comfort zone. I was a lot more comfortable having a male nurse.

BLOOM: Was there anything they did that helped with recovery or pain?

Michael Maschmann: I don’t even recall the medical part—which is good on their part. It was such a happy environment, and there was a lot of distraction, too. There was a place called Marnie’s Lounge for teenagers with a pool table and computers. I was probably there every day. They gave me my first introduction to nursing.

BLOOM: What is a typical day here?

Michael Maschmann: I come on shift and I’ll review a child’s care plan and get a report from the previous nurse and go introduce myself. A lot of the children are here for a while, so I already have a relationship with them.

During the day I may be providing personal care to children with spinal-cord injuries, or doing wound care and range of motion exercises with a child who had an orthopedic surgery. Our physiotherapists will update on the child’s status board if we can help with stretches. I also give medications. I mostly work evenings and one of the things I like about that is that many tasks have already been done, so there’s a lot more time to sit down with children and provide emotional support. 

Last week I was here when we introduced white boards in the patient rooms. This is a great way for us to get to know what’s important to a child. They can write what they like and talk about their goals for the week and long-term. The kids were really into filling it out. For example, if I was a patient at SickKids, I would put the hockey thing on the white board. It helps us to find common ground with children who are often here for a long time.

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

Michael Maschmann: Seeing a kid come in after surgery with big zimmers and wedges on, looking pretty miserable. And weeks or months later, seeing them walk out of here. I love working with kids. I get a lot of joy from some of the younger ones. They might not be able to walk like you or I, but they’re naturally happy, and that’s nice to see. It puts things in perspective.

BLOOM: What’s the greatest challenge?

Michael Maschmann: I think emotionally, it’s a lot to see sometimes. For children who were in a car accident and have a spinal-cord injury, it’s so sudden for that family. It’s different from families whose children have had cerebral palsy since birth. Sometimes the families have really high hopes. Or they’ve gone from both parents working every single day, to being here 24 hours a day, and knowing this is a life-long journey. It’s very difficult because it’s all of a sudden. And it’s not just the client, it’s the emotions of the mom and dad.

BLOOM: How do you cope with the emotions?

Michael Maschmann: When I was first introduced to this setting I think I took work home with me. I’d be thinking about the fact that I could go home, and I was upset that the kids I worked with were stuck here. Eventually I adjusted to it. I tell myself that when I walk through these doors I’ll do everything I can to help. I’ll give it 100 per cent. But then I have to leave.

BLOOM: Is there anything you do to manage stress?

Michael Maschmann: I love running. When I first came here there were a few people on the unit who were into running, and they got me into it. I’m now running 50K a week, and was at 100K, in advance of the Scotiabank Waterfront Marathon in October.

BLOOM: You never ran, and now you’re running a marathon?

Michael Maschmann: Yes. A bunch of us did a 15K. I find running helps with mental health a lot.

BLOOM: What was your experience as a student like here?

Michael Maschmann: I was very lucky that I had Lisa Drumonde as a preceptor. What I love about Holland Bloorview is it’s very small. So Lisa had me follow around physiotherapists to learn about what they did, and build relationships with other disciplines that my work depends on. I also got experience working on the other units so it was very holistic.

BLOOM: What are the most important qualities in a nurse?

Michael Maschmann: I think my teacher on my first day of nursing class did a good job explaining it when she said it’s both a science and an art. The medical side of it—understanding how the surgeries affect children—is important, but I stress the value of building relationships with families.

The caring aspect of it is where we can try to make even a little difference every single shift. It’s recognizing that it’s not just emotional for the client, but for the whole family. When we do build relationships, families start to open up, and that makes it easier for them. Sometimes just letting mom or dad know that nursing is here for their kid, if they want to go home for a night to be with their other kids, helps. They're dealing with a lot.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Michael Maschmann: I think Holland Bloorview does a great job with family-centred, holistic care. But what I hear from families is how hard it is for them when their children transition to adult rehab. I know that at age 19, the services are not there. I wish we could make it a bit more smooth for them. 

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After deep brain stimulation, 'I can't be happier'

By Louise Kinross

We recently heard from former Bloorview School student Osmond Shen, who wanted to share his experience with deep brain stimulation to treat involuntary movements caused by cerebral palsy. "It's made a huge difference in my body," says Osmond, 20, who enjoys playing Nintendo switch games with his brother Edmond, studying with a tutor, and online shopping. Deep brain stimulation is a surgery where thin wires called electrodes are placed into one or both sides of the brain in areas that control movement. The electrodes are connected by extension wires to a battery-operated device, similar to a pacemaker, placed under the skin below the collarbone. A few weeks after surgery, this device is programmed to interrupt the atypical signalling patterns causing movement problems.

BLOOM: What problem were you hoping deep brain stimulation would treat?

Osmond Shen: To decrease my dystonia, or uncontrolled body movements. Before my surgery, my legs were painfully stuck together all the time. Also, my neck was becoming so stiff and stuck to one side, that it was difficult to turn my head back and around. I experienced lots of pain when my muscles were stiff, and, when you go through constant pain during the night, you [don't] have enough sleep.

BLOOM: Had you tried other treatments?

Osmond Shen: Yes. I had been on an intrathecal baclofen pump since 2005. But even though for the last couple of years I've been on a high dose of this medication, my body was still stiff.

BLOOM: Who suggested deep brain stimulation to you?

Osmond Shen: My baclofen pump doctor at Toronto Rehab referred me to a movement disorder clinic at Toronto Western Hospital.

BLOOM: I thought this surgery was always done while the patient was awake, but that wasn't the case for you, right?

Osmond Shen: No. I wasn't awake during my six-hour procedure, because of my uncontrolled movements.

BLOOM: Was the recovery painful?

Osmond Shen: It wasn't painful, but it was very uncomfortable. I had staples on three parts of my body because, in addition to deep brain stimulation, I had my baclofen pump replaced. The staples were itchy and made me so uncomfortable.

BLOOM: What difference did deep brain stimulation make, in terms of how you feel, or what you can do?

Osmond Shen: First of all, I can turn around my neck easily. Also, I have much less pain in my legs. It's made a big difference since it was turned on. My body has been much more relaxed and flexible. Life is much easier for me now.

BLOOM: Many people would be anxious about having this surgery. Did you do anything in advance to try to help you relax?

Osmond Shen: My parents, my physiotherapist, my neurosurgeon and my family friend were all so positive, and on the same page, and kept encouraging me to go for this procedure. My part was doing research about this technology on the Internet.

BLOOM: Is there anything you aren't happy about with the results?

Osmond Shen: I can't be happier than I am today. The results are what I expected, and my doctor said it usually takes about one year to reach its full result, so I still expect more improvements.

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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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New takes on disability and adaptation

By Louise Kinross

There are so many wonderful media stories on new ways of thinking about disability and adaptation at the moment.

Let's start with this interview with A. Laura Brody in VoyageLA. Laura is a costume maker and designer who "[re-imagines] wheelchairs, walkers, and mobility scooters as works of art," she says. "My interest in mobility devices came from dealing with a former boyfriend's stroke. I was fascinated by wheelchairs, walkers, and any other devices that help people move and adapt. However, I couldn't understand why their designs were so cold, clinical and hideous. They were almost insultingly ugly." I pulled the photos above of a wheelchair Laura turned into an Edwardian throne from her website Opulent Mobility.

This afternoon I heard another wonderful CBC Tapestry episode hosted by Canadian singer songwriter Christa Couture. BLOOM interviewed Christa in the spring, after a maternity photo shoot she did with her prosthetic leg went viral. Christa had her leg amputated as a young teen to treat cancer.

Last month Christa did a series of Tapestry interviews on Rethinking Disability. They include a talk with Eli Clare, author of Brilliant Imperfection: Grappling with Cure, who is an American poet and activist with cerebral palsy. "On an individual level, my cerebral palsy is defined as 'trouble,' both medically and culturally," he says. "And yet, I don't have any idea who I'd be without tremoring hands, slurring speech, tight muscles and a rattling walk. So the idea that my cerebral palsy could be cured, in other words taken away as if it never existed, would totally and completely change who I am." This interview blew my mind.

Christa also interviewed Halifax sex educator Kaleigh Trace on how she came to love her body, including a disability she acquired in a car accident as a child. And Christa talked with Toronto's StopGap founder Luke Anderson on the merits of identity first vs. person first disability language. 

The Tapestry episode this afternoon included a candid interview with Amy Silverman, author of My Heart Can't Believe It. Amy is an American journalist who learned she wasn't as accepting of diversity as she thought when her daughter Sophie was born with Down syndrome. "We all have something that rocks our world ... that is a challenge that we think we could absolutely never meet," she says.

Finally, this Tapestry interview with Simon Paradis, a musician who suffered a severe brain injury in an accident, and his wife Kara Stanley, explores how the Canadian couple try to embrace a new normal. "There are moments when I'm playing at a gig, and I look at my left hand and think I'm going to play this Jimmy Page rift that I really like, and all of a sudden my fingers do something completely differently from what I'm actually trying to think of...' Simon says.

I think Christa Couture deserves her own CBC program to explore disability and adaptation.

Here are some other films and articles worth a watch or read.

Between sound and silence, The New York Times
This is a fabulous short film where adults who are deaf describe what it's like to live with cochlear implants.

Children are being euthanized in Belgium, The Washington Post
An opinion piece about three children given lethal injections in Belgium. They included an 11-year-old with cystic fibrosis and a 17-year-old with Duchenne muscular dystrophy.

Matt, Healthy Debate
A fascinating interview with Matt, a young man who becomes a personal support worker for another young man who has quadriplegia and uses a ventilator after breaking his neck in an accident. I'm not sure why Matt's last name isn't identified?

Rich Donovan was the only trader with a physical disability, The Muse
Rich has a new book coming out called Unleash Different: Achieving Business Success Through Disability. Here, he talks about working on Wall Street as a portfolio manager and how he created some workarounds, because his voice can be difficult to understand.

Boy with mystery condition is worshipped as a god, Born Different
A six-year-old Indian boy with disabilities is worshipped by locals who believe he is the reincarnation of the Hindu god Ganesha.  

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