In nursing 'everything good comes from the heart'

By Louise Kinross

Shevonne Thatham is a registered practical nurse at Holland Bloorview working with children who have complex disabilities and use ventilators to breathe. She just won the DAISY award, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. “Families like my realness,” Shevonne says. “A lot of people say I’m the Oprah on the unit, because people open up to me. I’m able to make them feel welcome and warm.” 

BLOOM: How did you get into this field?

Shevonne Thatham: I never had a thought about working in pediatrics until I did my consolidating year on a student placement here. I knew I wanted to be on a respiratory unit, and I landed here, and the kids just captured my heart. Often there weren’t parents at the bedside, and there was a sense of urgency, that these children needed care, love and compassion. This is my calling.

BLOOM: How did you choose nursing?

Shevonne Thatham: I was inspired by my mom. My mom is a practical nurse working in geriatrics. I used to go with my dad to pick her up on evenings, and we would go a little early so she could introduce me to her clients. I was always that caring person that wanted to help out. I was a little kid listening to their stories about how they got there. That sparked a flame inside me that never faded.

BLOOM: What’s a typical day—or night—like for you?

Shevonne Thatham: I do rotating shifts. I like nights because you’re the nurse, the respiratory therapist and the doctor—you do it all. The clients I work with require total care. In the morning, we prepare their meds, administer their feeds, and get them up in their chairs. They may wear devices like ankle-foot orthoses. I’m their hands, their feet, their eyes, their ears. Then, I’m with a child for the day, whether they go to therapies, school or off-site. They’re complex, so I support any medical needs they have. I’m their medical parent. For children who have a tracheotomy, they may need a suction to maintain their airway. I ensure their [feeding] tubes are running. 

BLOOM: What is it like working with this population?

Shevonne Thatham: It’s about empowering the families and giving them that hope and courage that their child will make it home. Some of these kids were diagnosed at birth, so it was life changing for their parents. It’s giving them that hope that everything is okay, despite their differences. You can still have a life and a family.

BLOOM: You must develop very deep connections with these kids.

Shevonne Thatham: Yes. They can’t communicate with me, because many of them are non-verbal. But I know exactly what’s going on with them. Non-verbal communication is key, and learning to read them—whether it’s an elevated heart rate or a grimace in their face.

BLOOM: What’s most challenging about this work?

Shevonne Thatham: Advocating for someone who is non-verbal. Every child is different. We’re at the bedside and we’re the first level of contact with these kids. Sometimes it’s hard for physicians, who are more focused on the medical, to understand something may be about comfort. When I advocate, it’s not what I want, it’s what the client needs.

Another challenge is that when the family comes to Holland Bloorview, the parents are in that grieving stage. They’re dealing with a lot of anger and emotions. With families, sometimes I need to be a social worker, which is not my field. I need to think about how I say what I need to say in the appropriate way, that is caring and compassionate as well. Sometimes it’s sitting with parents and if they’re crying, I’m crying.

BLOOM: What are the joys?

Shevonne Thatham: There’s so much. Doing what I love to do. Seeing a smile on a child’s face or parents saying thank you. Knowing that I’ve made a difference or that I’m helping to better their chances of going home quickly. Advocating. Teaching families and teaching clients who are able to do their own self-care. Aiding in their everyday life.

BLOOM: What emotions come with the job?

Shevonne Thatham: Frustration. It’s hard to understand, sometimes, what is going on with a client. Happiness. Moments of happiness. Moments of anger, because why? You just think ‘Why is this happening to these families?’ Being able to be a person in their lives, so when the family comes back here later for respite, the child remembers you, and you know you left an imprint in their life.

BLOOM: How do you manage those emotions?

Shevonne Thatham: I’m a spiritual person, so I would pray for my families and for myself. I bring everything to God. I also use music, driving home, to debrief.

BLOOM: What have you learned from families?

Shevonne Thatham: They’re taking on a new job that they’ve not signed up for, or gone to school for. And in the end, they’re able to be the parent, the nurse and the doctor for their own child. Families have taught me that they’re strong people.

BLOOM: If you had to give yourself advice on your first day, from where you sit now, what would you say?

Shevonne Thatham: Put your heart into it. Everything good comes from the heart. If this is where you want to be, show it, and it will manifest a beautiful outcome.

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

Shevonne Thatham: I think we’re going in the right direction, and since I got here there are more opportunities for kids who have a trache to do normal daily activities. I’d like it if we had a really shallow end in our pool, because despite having a trache, a lot of our kids want to be in the pool. It would be great if we had some sort of protection for the trache, so that they could go in the water. 

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'I like a nurse who's caring, sometimes funny, always positive'

By Louise Kinross

Justin Chau is an 11-year-old inpatient at Holland Bloorview. He's writing a story about his life following a surgery to remove a brain tumour. He loves orange, because it’s the colour of flames, drawing abstract art and camping. We spoke about his story and experiences in hospital.

BLOOM: You wrote that when you woke up after your 10-hour surgery, everything felt fake. What do you mean?

Justin Chau: I wasn’t aware of where I was, because it didn’t feel real. I wasn’t aware of where I was in space. I felt different in my body. I didn’t feel like my normal self. I felt like it was all a dream in my head.

BLOOM: In your story, you say you’ve been able to sleep better since you came to Holland Bloorview. Is that because it’s quieter here?

Justin Chau: No. It’s because I do lots of therapy and talk to lots of people and I’ve made friends. I’m not on any medication, I can walk and do stuff better, and I’m independent in my room. Because I’ve been here for longer, I get to know people better. I feel like I’m not alone, because everyone is supporting me.

BLOOM: You wrote about one friend you made here, who was a baby.

Justin Chau: Yes. My mom made friends with his mom, and one day I got to babysit him for a couple of minutes in my room, while our moms went to do something. He would laugh at me while I do stuff. After that his mom trusted me, so I continued to babysit him. They call us soul brothers, because we both have a scar on the same side of our head. When it was his last night here, I decided to go and play with him. My mom and his mom exchanged numbers so we can talk to each other and meet up in the summer. This is just the beginning of our friendship.

BLOOM: You mention a big list of nurses that you like, and say they’ve inspired you to consider nursing as a career. What qualities are important in a nurse?

Justin Chau: I think a nurse that always watches over you and that comes in at the right time to check if you need help. They should know my feeding schedule. They should teach me and guide me. Since I want to be a nurse, they taught me to do my own feeds.

I like a nurse who's caring, sometimes funny, always positive.

BLOOM: Why did you decide to write a story about your experiences?

Justin Chau: My social worker, Anna Marie, asked me if I wanted to create a timeline of how far I’ve come, and the progress I’ve made. I was like ‘That’s a good idea, can I write a story?’ It’s important because I want to know how much I’ve been improving, and how quickly and well my body has recovered.

BLOOM: Is there anything we can do better here at Holland Bloorview?

Justin Chau: I like almost everything here. I think the therapists do a really good job of pushing kids to work harder, so that they improve, but not so hard that we’re exhausted. They push us so that we feel confident and strong.

I think this hospital is one of the best that I’ve seen. They have recreation in case you’re bored, and there are lots of things to do. You get a nice room with a TV, and the nurses are always caring for you. And you can go to school here. I have fun going to school.

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With Aicam on the case, hospitalized kids have fun

By Louise Kinross

Aicam Chuong has been a nurse at Holland Bloorview for over 30 years—first as a student, then working with children hospitalized here with complex medical conditions and acquired brain injury related to trauma or illness. She’s seen the hospital through four name changes and two sites. A patient recently dubbed her a vampire for the precision with which she always draws blood on the first poke.

BLOOM: How did you get into the field?

Aicam Chuong: When I was in high school I volunteered in a nursing home feeding the old folks. One day I was there when a code blue was called on the unit, and I saw doctors and nurses come, and each played a different role. One was starting the IV, one was documenting what was going on, one was giving medication orders. I thought ‘Wow, this is really interesting. I saw the dedication, and I thought maybe I want to do that. I went through a four-year nursing program in Nova Scotia and then moved to Toronto with my family.

BLOOM: Why were you interested in children and rehab?

Aicam Chuong: Children are fun. They recover more quickly than adults and they also open up and tell you what’s going on. A child may draw a picture about being sick and write ‘I want my mommy or daddy here,’ and sometimes parents have to work. I remember calling one mother and telling her: ‘I’ve told your son that you’re coming back after lunch, so you better come back, because I have to tell him the truth.’ I love working with kids. You can console them, you can give them a hug, you can carry them around. You can play games with them to make them happy.

BLOOM: What is a typical day like on the brain injury unit?

Aicam Chuong: I get my assignment of two to four patients and check in to read the report on how their night went. Then I go into Meditech and look at the care plan so I know how to provide care and get the medications. Some of the patients need extra tests or blood work. The kids are here for therapy, so it’s very important that they have breakfast and be ready for therapy on time. Time management is very important, and I want to make sure all of my patients get my attention.

One of the patients said she was going to give me a name, and the name was vampire, because while some nurses didn’t get her blood with many pokes, I always got it with the first poke. We have to have fun sometimes with what we do!

BLOOM: I think vampire is a great name to recognize your expertise with blood draws.

Aicam Chuong: Something that helps us when we have to do invasive procedures is to work with our therapeutic clowns. They can come and distract the patient by doing something funny or singing a song. Our child-life specialists also help prepare our patients through play. That’s how our team works.

BLOOM: What is the greatest joy of your work?

Aicam Chuong: I’m happy to be here and I’m happy I can help the patient and the family. There’s one joyous thing in particular I remember. One of the patients had a head injury and was staying with us from up north. One day he came back from an appointment at SickKids and he and his mother were very upset and emotional. They had been told he probably wouldn’t regain his speech.

But guess what? This patient comes to me one day and says ‘I want to learn Chinese and I want to learn Cantonese.’ I said ‘Okay, let’s start today, right now. I will take my break time—an hour a day—and I’m going to do this for you.’ We started with simple vocabulary and he learned one sentence each day. By the time he left, he could have a full conversation in Cantonese.

One day in the parking lot a Chinese couple was having trouble with paying at the gate and he started talking Chinese with them and they said ‘You speak Chinese, but you’re Caucasian?’ He came back and told me ‘Guess what I just did?’ I said ‘I hope something good.’ He told me about helping the couple outside and it was amazing. His speaking tone was so accurate. His family was so appreciative and always come back to see us when they’re here for appointments.

BLOOM: Was the patient able to speak again in English?

Aicam Chuong: Yes. That was a very joyous story. He gained back his language and he also learned Cantonese.

BLOOM: What is the greatest challenge?

Aicam Chuong: When families come in after their child has had a sudden trauma—like a car accident—or a tumour has been diagnosed. They don’t know what’s going on, or what will happen. The challenge as a nurse is to be present for them, to do active listening and to figure out what they most need help with right now.

BLOOM: I assume some families are very distraught and it must be hard to be on the receiving end of that pain.

Aicam Chuong: We are here for the family. When I’m here, it’s not just my body, but my mind and my heart. The heart is very important.

BLOOM: What about when you’re incredibly busy?

Aicam Chuong: We make time. I would rather have a 10-minute break than an hour if that can help the family. We tell them it’s a partnership. I may suggest spending an hour or two with their son or daughter so they can go have a shower or go down to Tim Horton’s for a coffee.

BLOOM: What emotions come with the job?

Aicam Chuong: Joy, caring, understanding. Sometimes I feel helpless if there’s something we can't do and we have to transfer the patient back to SickKids or another hospital. But when I don’t have the solution to something, I go to my manager and my colleagues for help. We are a team and we stick together.

BLOOM: Do you do anything to manage stress?

Aicam Chuong: I exercise. I go swimming five to six days a week in the community. I do Aquafit and then I go sit in the sauna and get all of the sweat out. If I work a day shift, I swim in the evening. If I work an evening shift I swim in the day. It makes a big difference. I also listen to classical Chinese music. It relaxes my mind.

BLOOM: You’ve had such a long career here. What keeps you coming back?

Aicam Chuong: We can make a big difference in the kids’ lives and that’s what makes me stay. It’s very rewarding.

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

Aicam Chuong: We see so many kids who come to us after trauma. I think we need better psychological support on the unit for patients and their families. Children and parents need someone to spend more time talking with them. If a parent comes out of a meeting where the news was not good, they cry, and they need to talk about it. It’s hard to do that and devote equal time to all of your patients.

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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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'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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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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A nurse's stories reveal the heart of medicine

By Louise Kinross

I just finished The Language of Kindness: A Nurse's Stories of Life, Death and Hope and I can't get the images of author Christie Watson's British patients out of my head.

There is Betty, a frail old woman lying on a hospital stretcher with chest pains, following the recent death of her husband. After getting her a sandwich and a cup of tea, Christie holds her "paper-thin hand," closes her eyes and listens to her talk about her youth, till Christie is watching "a young woman in a dress made of parachute silk dancing with her new husband..."

There is the 14-year-old boy with cystic fibrosis that Christie readies for a new set of lungs. She wets his lips with a sponge in sterile water, and takes his Game Boy, swearing "to guard it with my life." When the porter comes to take him to the operating room, he turns to ask if she'll be with him. "The whole time," she tells him. "I'll be there."

There is Jasmine, the 12-year-old girl on a ventilator and dying, after a house fire. Her brother is nearby, also on a ventilator. Their mother has died. When an aunt arrives, the doctor explains the severity of Jasmine's injury and that they need to "let nature take its course."

The aunt doesn't understand. "Let nature take its course?" she asks Christie, confused.

"She is dying," Christie says.

"Jasmine's aunt is too shocked to hear a narrative," she explains to the reader. "She needs blunt, quick information to break through the shock."

Then, before bringing the aunt in to see her niece, Christie and another nurse tenderly wash the girl's hair, to remove the overpowering smell of smoke. "Smelling the lingering smoke will surely make it worse for Jasmine's aunt," she writes. "Sometimes, not making it worse, is all we can do."

There are nurses who work a night-shift, then travel two hours to the funeral of Samuel, a premature baby they've cared for. They've been up for 21 hours, Christie notes.

One of the nurses, Christie writes, has been at Samuel's bedside round the clock for months, singing to him, holding his hand and stroking his hair. Christie recalls watching her pull a container of bubbles from her pocket, then blow them gently above Samuel, popping them one by one, as he kicked his legs.

Christie writes largely in the present tense. In her poetic and philosophical book—which weaves in history, science, architecture and social commentary—she brings the hospital alive with vivid descriptions of the sights, sounds, and smells of each unit, and the complex characters who are her patients, their families and her co-workers. "Nursing is a career that demands chunks of your soul on a daily basis," she writes.

This book shows clearly why nurses, who spend the most time with patients, are in a unique position to provide not just physical and medical care, but emotional support, in a flexible, non-judgmental way that honours a patient's story and helps them feel heard and understood.

I listened to this as an audio book that Christie reads, and it was captivating.

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Falling asleep on a home-care night shift spurs nurse's research

By Louise Kinross

Krista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickKids—where she taught their parents the skills to transfer home—and as a home-care nurse.

In 2015, Krista published a study that found parents of kids who use ventilators at home risk their own health because they struggle to sleep—even when a nurse is in the home. More recently, she’s interviewed parents and home-care nurses to study the factors that contribute to poor parent sleep. She works at SickKids and Holland Bloorview to improve the care and training families of children with ventilators receive as they move from SickKids to Holland Bloorview, and then home.

BLOOM: How did you get into this field?

Krista Keilty: I came to pediatric nursing straight out of undergrad. It was my favourite clinical placement. At the time, I was living in Fredericton and there were very few jobs in New Brunswick. But SickKids was recruiting across the country and set up in a hotel room in Fredericton. In less than an hour, they had me sign a contract and I agreed to move from Fredericton to Toronto, to a hospital and city I had never visited.

BLOOM: Wow. What was your first job there?

Krista Keilty: I was a staff nurse on the Ear, Nose and Throat (ENT) floor, which included a constant-care room for children with chronic complex needs—most of whom had a tracheotomy. I became very interested in being one of the primary nurses training families in preparation for their move home. We didn’t have respiratory therapists then, so nursing had a prominent role.

BLOOM: Given it was your first job out of school, were you nervous to be working with children who required such a high degree of care?

Krista Keilty: I don’t remember being nervous about caring for children with traches. I remember my eyes being wide open in a very large organization, with lots happening and so many opportunities in front of me.

I was warmly embraced by a number of really caring, longstanding ENT nurses who mentored me with a lot of enthusiasm. I learned that trache skill-set early in my career. In the day they called us ‘trache-trained,’ and we travelled around the building as needed.

BLOOM: What is your research focused on now?

Krista Keilty: Understanding the experience of families providing comprehensive medical care for their child at home has been the foundation of my career. Fast forward many years, my research focus is building a program that examines the experiences and outcomes of caregivers when children depend on technology and require constant observation. If a machine were not to function, there would be a negative outcome for the child.

BLOOM: Two years ago we did a story about your study showing parents of children who use ventilators at home are sleep-deprived, and this puts them at risk for physical and mental health problems. Did that study lead to any policy changes that enable families to get more nursing hours?

Krista Keilty: Not a lot has changed, except that everything has changed. With the community care access centres (CCAC) moving to the local health integrated networks (LHIN), there is interest in the LHIN looking at new models of integrated care and funding packages for pediatric home care. At least two LHINs, including Toronto Central, have tested self-directed funding, and the evaluations are pending. A recent Ontario announcement suggests there will be movement towards families having more say about their care, but the details are pending.

Not much has changed in access to home-care nursing. Family voices are being heard better, but change to new ways of doing things is slow. Discharges are delayed while families wait for home care to be available, and once home, the amount of care received is often inadequate.

I think that targeting improvements in [parent] sleep and respite remains a priority. We continue to build evidence to plan an intervention around the sleep disturbance we’ve documented. I’m doing a follow-up study here at Holland Bloorview where we examine the perceptions of family caregivers and home-care nurses about the factors influencing sleep disturbance.

BLOOM: What have you learned?

Krista Keilty: We heard from families about the inability to turn off the switch of worry and vigilance, even when a nurse is in the home to watch the child. Whether we call that insomnia or constant vigilance, that’s one area of work that may lend itself to behaviourally-based interventions.

Another major finding was the use of personal technology to help parents monitor their child or monitor the nurse. Families describe nurses falling asleep often.

Parents may have a baby monitor visible at their bedside with the volume turned on. Or they may ask nurses to text updates on their child throughout the night, from the child’s bedroom to their bedroom.

We know the influence of technology on sleep is a public health concern in the general population, and it’s likely a large source of interference with caregiver sleep.

BLOOM: But if a parent is afraid the nurse may fall asleep, it sounds like there are good reasons to use a monitor.

Krista Keilty: Consistency, continuity and competency in the nurses is important. Nursing agencies have a real challenge filling these shifts.

Right now, the duration of shifts is not well aligned with sleep needs. If you only have six-hour nursing shifts but you need eight hours of sleep, you’re already clipping your sleep to provide the hand over to the nurse.

Another study we’ve submitted for publication examined the use of unregulated caregivers for a longer shift—so hiring nannies, university students and others who are not classically trained for the work.

We studied 20 families who identified and trained a provider around competency and the family’s values about how they would like the care provided. They used some public and some private dollars to pay them. We wanted to know if having an unregulated caregiver who worked a longer duration of shift was an acceptable way of supporting the families.

BLOOM: How did that work out?

Krista Keilty: The families didn’t communicate any safety concerns with unregulated caregiver use. They did speak about a large burden on them to identify, hire and train these caregivers. They didn’t always feel confident that they knew how to do that, and there was no formal support system to help them.

But they also told us they appreciated having them as part of their care team. They often fit in well with the families and, once trained, offered competent and compassionate care.

BLOOM: Can you talk about what it’s like to be a home-care nurse on a night shift?

Krista Keilty: We’ve asked nurses that question in our recent study. They tell us that the nature of the work is very difficult. It can be isolating and lonely. It’s not like working in a busy hospital at night, where you have colleagues who can help you stay awake.

Not only are home-care nurses working in isolation, but one of the instructions from many families is to work in the dark, so they don’t wake the child or the family. But being in the dark is the most major cue for sleep. In a focus group, I asked how many home-care nurses had fallen asleep on the job, and there was a lot of nodding in the room.

BLOOM: Can you tell us about your own experience falling asleep on a shift?

Krista Keilty: Early in my career, when I was working as an ENT nurse at SickKids, I was also employed by a home-care nursing agency. A number of us at SickKids and Holland Bloorview were moonlighting. We did this to support the families as they started to leave the hospitals with medical technology.

One day, I got a call late in the afternoon to do a home-care shift that evening. It wasn’t uncommon to get last-minute calls. That day I hadn’t worked at SickKids, but it was my day off, and I’d been at the beach. I was sunburned and tired and in no frame of mind to be staying up all night. I declined the shift—many, many times.

They kept calling back, and I felt a lot of pressure. Finally, the actual owner of the agency called me, and she wasn’t taking no for an answer. The shift was in Oakville and I’d never travelled outside of Toronto, since I was from New Brunswick. The owner told me to get on the GO train and she’d pick me up in Oakville and drive me to the house at 11 p.m. I’d be working with a family I’d never met, with a child whose care I wasn’t familiar with, in the dark.

The child was on the main floor of a large suburban home. I met the family at the door and they briefly went over the child’s care plan and showed me the equipment. The boy was asleep, non-verbal, and on a ventilator. The parents went off to bed and I did my initial assessment of the child and provided care for a number of hours.

Sometime between the hours of 2 and 4 a.m., which tends to be the witching hour for safety incidents related to sleeping on the job, because it’s the hardest time to stay awake physiologically, I fell asleep. The father woke me up when he heard the kangaroo pump beeping, from a distance, in this large home.

I was forever changed. I realized I’d let him down and put the child at risk by not being available to the child when clearly this was an alarm to be alert to. I failed to hear it. I tried hard to have a conversation with the family the next morning about it, but they dismissed me, and I’m sure they never wanted to see me again.

BLOOM: How did this experience change you?

Krista Keilty: I had to reflect on how the provider-family relationship was structured in such a way that I was postured to be the expert, when clearly, just the fact that I had the title ‘registered nurse,’ didn’t mean I was good enough that night. I was trained on the technical side for this child’s care, but I didn’t know the family and I didn’t have a rapport with them.

I was a caring, hard-working, professional nurse, so I knew I was probably one among many who had let the family down and posed a safety risk. And, importantly—I knew I had threatened that family’s ability to get respite in the future, even when a nurse was in the home.

BLOOM: Because they would be afraid it would happen again.

Krista Keilty: Yes. This was a pivotal story in my career that spurred the idea for my PhD study.

BLOOM: What do parents say is the greatest challenge caring for their child at home?

Krista Keilty: They continue to tell us that it’s the complexity of the health system—that navigating that system takes a lot of their time and energy. In another study, I looked at the ways families spend their time. The ‘case-management’ they did for their child was a large time consumer, and it was also the most stressful part of what they did.

That’s partly why I’m excited to be here in this role. I’m working on a quality improvement project to support the families’ transition from SickKids to Holland Bloorview and then home. I’m trying to smooth those processes, and we have families engaged to tell us what it needs to look like.

BLOOM: In addition to sleep deprivation, I saw a paper you wrote that talked about how having a child with complex needs at home affects the family financially.

Krista Keilty: Yes. We’ve documented that income levels of family caregivers are less than those of a community-based sample with healthy children. Family caregivers of children with medical complexity are under-employed at a time when many would be in their highest, income-earning years.

The burden, for families, has been documented, in terms of negative impact on income, depression and anxiety, and in work by Dr. Eyal Cohen at SickKids and others, even shorter lifespans in mothers due to premature death. These data spur me, and others, on.

BLOOM: What emotions do you experience working with these families?

Krista Keilty: The gamut. I've learned that I'm highly empathic to the emotions of those in my environment. Given families can be sad and angry at times, then I find I can feel this way, too. Providers can be angry, or at least highly frustrated. But instead of feeling downcast, I most often feel happy and excited for what is possible. Families frequently experience uplifts and share their joys and hopes, which I find contagious.

They are very very thankful when their care is compassionate and supportive. Clinical and research colleagues are also energizing. I'm a big believer in the power of sleep. I need a lot of it. And it helps me get up every day with the will and ability to take on new challenges and cope with whatever comes my way. And, of course, a walk in Spiral Garden is always good for the soul.

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'The goals of the family direct where we go'

By Louise Kinross

Erin Brandon is one of seven nurse practitioners at Holland Bloorview. She runs two clinics—one for families of children with cerebral palsy and complex medical needs and one for families of girls with Rett syndrome. Her appointments last up to two hours and include comprehensive medical assessments, community resource planning and troubleshooting and the emotional support that enables families to care for children with high needs at home, rather than in the hospital.

Erin came to Holland Bloorview in 2014 after spending a year in the complex care unit at SickKids Hospital. ‘There’s something about these kids and their families that really struck me,’ Erin says. ‘There was an openness. I felt I was included as part of the family. I felt like I had an impact on their overall quality of life.’

BLOOM: How did you get into this field?

Erin Brandon: My mother always told me I should be a nurse. She said I was very caring and nursing would be an area that I would excel in. She had an inkling and she was absolutely right. At first I worked in general surgery at SickKids. Nursing brings an inclusiveness and an intimacy with the care you provide. I had also worked as an undergraduate at Sunnybrook in cardiology and met a couple of the nurse practitioners there. I was in awe of the dynamic they added to the health care team: the direct patient care, the clinical management, and the medical management. I felt that in the role of the nurse practitioner I could do a little bit extra for a family.

BLOOM: What is a typical day like?

Erin Brandon: There are never typical days! I am constantly learning new things from families and kids. If it’s a clinic day I usually have two appointments that can last up to two hours each. I do a comprehensive head-to-toe assessment and we try our best to cover every area of care. The goals of the family direct where we go. We talk about community resources, goals for functional abilities, medical concerns, family dynamics and long-term planning. These children are always going to need 24-hour support so you can’t just focus on the medical—it has to be everything. In-between assessments I get six to 20 calls a day from families in the community who need support. I provide triage to families if their child has a fever and isn’t eating and they’re trying to determine whether to take their child to emergency or a pediatrician. These families are very good at advocating for their children and they know their kids better than anyone, but at times providing a bit of reassurance and support to know they're doing the right thing helps to boost their confidence.

I work with schools, home care resources and other pediatricians to try to make the continuity of care better and break down barriers outside these walls.

BLOOM: I think every family could benefit from a nurse practitioner!

Erin Brandon: Any family can benefit from having the coordination and support, but as our resources are limited, we typically get involved when there are a lot of things falling through the cracks and they need extra support.

BLOOM: What’s challenging about this work?

Erin Brandon: One of the amazing things about Holland Bloorview is the opportunities to get involved—in research or program management or even in the strategic plan. Sometimes it’s a challenge not to get pulled in too many directions. I want to provide very good quality care to the families and that takes time. One common question that I get is 'Why didn't you become a physician?' I love being a nurse and being a nurse practitioner allows me to have the connection, flexibility and time to spend with families that I wouldn't have in another role. That helps me do the job that I do. There are so many pressures on these families, so many targets they need to look after and meet. I’m there to help them prioritize what is most important to them at this time, and what can wait.

BLOOM: And to give them permission to wait. I was just reading an article about the invisible work of patients—about how we expect so much from families, and then when they don’t get some of the tasks done, we tend to say they’re not following through or not being compliant.

Erin Brandon: Nursing has helped me so much in a medical world. When a family’s world has medical complexity, we’re very good at making work and identifying problems that need to be fixed. But as nurses, we’ve always been taught that the client and family is at the centre of everything. They’re the expert at what they want in their life. Listening to families helps to direct the medical piece, so that it fits into their life rather than standing outside of it.

BLOOM: Yes, so the family isn’t shoved into an idea of what other people think is ideal for them.

Erin Brandon: I can give a solution or identify next steps, but if that doesn’t fit with a family’s goals, why are we taking these steps? A good portion of what I do is taking this guilt away from families. There’s so much pressure on them. It needs to be about what they need, rather than what my recommendations are.

BLOOM: How do you manage the emotions that come with your job?

Erin Brandon: This is the most humbling role I’ve ever had, because of how open families are with me. There are times when you take it home, I don’t know how you couldn’t. There are days when I cry with families. But I cry in the losses and the successes. These families include me as an extension of their family, which is the biggest honour. And the successes, no matter how big or small, always outweigh the loss for me.

I also have a very supportive team here, which includes physicians, therapists, nurses, nurse practitioners and managers. I can talk to them to work things through when I need to.

BLOOM: So you talk to one of them if you’re having a difficult situation with a family?

Erin Brandon: You have to. I think there are things that happen with children with medical complexity that no one can anticipate.

BLOOM: What do you love about your job?

Erin Brandon: It’s so hard to describe. It’s the kids. And the families. I’ve had conversations in clinic that I don’t think these families open up to other people about. And to have that connection with a family is the most rewarding thing you can ever have. When I was in general surgery, a family may come in and go home, and you may not see them again. In this work, to see the growth of a family and a child over their life span is an incredible gift. That’s one of the things that drew me here and to complex care.

BLOOM: What have you learned from families?

Erin Brandon: One of the biggest things I’ve learned is that everyone is different, no matter what their diagnosis. The other thing every single family has taught me is that no matter whether they’re flailing or they have it all pulled together, there is a huge amount of stress that they come with every day, just to walk out the door.

BLOOM: Have you changed?

Erin Brandon: I was very medically focused when I came here. I feel that families have opened me up to so many other possibilities. They’ve taught me what is important to them and that the medical part is not always the most important part of their lives. Perhaps the parent just needs to talk about something that’s happened, because to them, they can’t get past it until they’ve talked about it. For me to be in an environment where I have that flexibility to support families in this way is fabulous. I also have the option of saying ‘We have a lot to discuss today, maybe we should also meet again?’

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

Erin Brandon: We’ve got so many great organizations in Toronto but they all have different systems and set-ups. We need to break down those walls. Why do we need a medical record at every single facility? Why not just one system across facilities, so everyone is connected? One thing that frustrates me is the money comes from the same spot—the government. We’ve created this. We could make it so much easier for families if we improved our connections—even between SickKids to here and other [children’s treatment networks].

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'I come from a family of nurses'

By Louise Kinross

Caroline Ivorra (left) is a registered nurse on Holland Bloorview’s brain injury rehab team. She works with children who are hospitalized as a result of brain trauma or illness. Both of her parents are nurses, and her mother Marion worked for years on our complex continuing care unit. Thanks to physiotherapist Kelly Brewer for suggesting Caroline for our series of candid interviews with clinicians and researchers.

BLOOM: How did you get into nursing in children’s rehab?

Caroline Ivorra: Before nursing I worked at an insurance company but it wasn’t stimulating enough for me, so I decided to go back to school as a mature student. I come from a family of nurses and my mother used to work here so that was an influence. While I was a student I worked here as a health care provider for our respite camp one summer. That opened my eyes to the idea of working on the floor with children. As much as I came to work, it didn’t feel like work. I learned a lot from the kids, from the resilience they have. And the colleagues were great.

BLOOM: What does a typical day look like now?

Caroline Ivorra: I come in and get my three patient assignment for the day, and receive the hand-over report from the previous shift. Then I’ll read through my patients’ care plans to see what needs to be done intervention-wise. Because I’m on the brain-injury unit, we often have behavioural plans, so I’ll read through those tips and strategies. Based on what I read, I plan and prioritize for the day. Then I’ll go and check on patients, introduce myself, prepare their medications, help them get up and have breakfast and send them off to school or therapy. Then I interact with the physicians and therapists. A therapist may have to show me a new exercise they’re working on that they’d like us to bring up to the floor. Then we bring the kids up for lunch and help them change or toilet or have a break. We bring them back to school or therapy in the afternoon. If a child isn’t feeling well or I want them to see the doctor, I might keep them on the unit.

BLOOM: What’s the biggest challenge?

Caroline Ivorra: Sometimes behaviours are quite challenging. Brain injury can cause agitation. It can change a person’s comprehension and ability to process and focus. You have to learn how to give a child one task at a time, or how to ask a question to get an appropriate response. If the child gets angry at you, it’s not because of you. It’s part of trying to work through their healing and rehab. Behaviour is challenging because sometimes a patient is so set in their mind and you can’t change it. But you try to manoeuvre and figure out a way to cooperate.

The skills and meds and stuff you can learn. But a behaviour can be different from one hour to the next and from one day to the next.

BLOOM: How do you cope with that?

Caroline Ivorra: Sometimes I’ll ask my colleagues for help. They may have had this client or dealt with similar situations, so that team effort really helps. Over the years I’ve learned not to personalize things as much.

BLOOM: You’re working with some families whose children were healthy before being in a catastrophic accident. They’re in a great deal of distress. How do you support them?

Caroline Ivorra: By talking about it. Sometimes yes, I’ll cry too. It can be hard. I try to support the family as best I can by listening. Sometimes they just want to talk and have someone listen. I may not have the answers in terms of why this happened, and I may not be able to say what the future will hold. But at least I can support them with the tools and resources we do have. [I try] to empower them.

BLOOM: What do you love about your job?

Caroline Ivorra: The kids. I learn so much from them. They’re happy and they will joke and play and have fun, even though they’re in hospital. We all try to make it as normal as possible for them with day-to-day activities and encourage them with what they can do.

BLOOM: What have you learned from the families?

Caroline Ivorra: You can get the same results doing things different ways. Some families like things done a certain way, and another family likes it a different way. As long as a task gets done, there’s not a right or wrong way, as long as you keep the patient safe.

BLOOM: So you’re talking about being flexible to preferences families have?

Caroline Ivorra: Yes, learning to be flexible. At school you learn from a textbook and then you work with real life and say: ‘Oh well, that’s not what the textbook said.’ There are little things about how to dress or seat a child in their chair or their routines that make a world of difference for a family.

BLOOM: You’ve been here almost four years now.

Caroline Ivorra: I came directly out of nursing school.

BLOOM: Has the work changed you as a person?

Caroline Ivorra: It’s opened up my eyes a lot, I think, to this world of possibilities. I believe that now, working here I really believe that. I see what these kids can do and I’m like ‘Wow!’

BLOOM: What would you tell a nurse just starting here?

Caroline Ivorra: That it’s hard. I wouldn’t say it’s an easy job, or that it comes easy. But with patience and an open mind you’ll get through it and you’ll get the satisfaction and the gains. I was super scared when I first started.

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

Caroline Ivorra: To have more staff so the clients could have more one-to-one. You have three patients and you might need to be more with one child than the others because of the care required, or because a family member is at the bedside. So I would want to have three of me so I could be with each family all the time.

BLOOM: How did your parents’ nursing influence you?

Caroline Ivorra: My dad was a scrub nurse at Toronto General and my mom worked here. But they’ve also done work with Doctors Without Borders and the Red Cross and travelled. For three years they worked in Northern Ontario on a reserve. I think seeing all of those opportunities, and everything they’ve done, drove me into the field.

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Moving from bedside to clinic broadens a nurse's perspective

By Louise Kinross

Nancy Campbell (left) has worked as a registered practical nurse at Holland Bloorview for 15 years. She was hired straight out of nursing school, and worked the first 12 years with children on our complex continuing care (CCC) unit. She then moved to outpatient services to work in our hypertonia, spina bifida and Rett syndrome clinics. Rohan Mahabir suggested Nancy for our candid interviews on what it means to work in children’s rehab.

BLOOM: How did you get into nursing here?

Nancy Campbell: I love children. And this is where I landed after nursing school. I was very interested in pediatric nursing and when I had the opportunity to come and interview and was offered a position, I came and I never left.

BLOOM: What does a day look like for you?

Nancy Campbell: Most of my time is spent in our hypertonia clinic, working with children who have increased muscle tone. They may have stiff muscles or uncontrolled movements that make it difficult to walk or sit comfortably in chairs.

We do a nursing assessment where we ask about their general health and their reactions to any tone medications or interventions, to see if what we’ve recommended is working. Laurie Liscumb (photo right), who is the other nurse, and I are the point people for organizing follow-up appointments, funding or casting and providing education about interventions and medications.

BLOOM: What’s the greatest challenge?

Nancy Campbell: When we see children in pain. Working within this system means that there’s often a wait to fix that. For example, there will be a wait for a child to get an appointment for Botox injections at SickKids.

BLOOM: So it’s the moral dilemma of seeing pain and not being able to relieve it?

Nancy Campbell: Exactly. Wishing you could help immediately. We also see the impact that pain has on entire families—on siblings and parents and sleep and relationships.

BLOOM: How do you cope with that?

Nancy Campbell: By talking to my colleagues. And to families. Even if we can’t offer the immediate support of the intervention, I hope speaking about pain and going through the journey together helps.

BLOOM: What do you love about your job?

Nancy Campbell: I love the people. I love the team I work with. They’re super supportive and everybody really does want our clients to have the best life they can have and we’re all working towards that goal. You see it in every decision.

I love the families. Sometimes you look at a situation and think ‘If that was me, I don’t know if I could pull myself out of bed in the morning.’ But these families try their best to keep it all together. They’re resilient.

BLOOM: What have you learned from families?

Nancy Campbell: It’s really important to families that you see them as families, and not just as caregivers to a disabled child. When I moved from working with inpatients to outpatients, I realized that these are all families with their own lives happening elsewhere, and it’s not just clinical. You have to figure out how a clinical assessment will fit into a particular family’s life. Will it work and have meaning for that family, or not?

BLOOM: I didn’t realize you’d worked on CCC. What were the challenges there?

Nancy Campbell: Helping families cope with grief when their child suffers a catastrophic injury is very difficult.

BLOOM: How do you support those families?

Nancy Campbell: By trying to read the situation, to know whether a parent was ready to have a discussion about it, or needed space. I always tried to make my interaction with the child positive, so I could role model that you could still have a positive relationship with this beautiful little child.

BLOOM: What did you love about working on CCC?

Nancy Campbell: Developing long-term relationships with families. It was developing that trusting relationship where families felt safe having you with their child—and especially when they couldn’t be there.

BLOOM: How did you make the decision to move to outpatient nursing?

Nancy Campbell: I love bedside nursing, so I was hesitant when the opportunity came up. But I was looking for a new challenge with my career and new learning opportunities. I do miss the hands-on work with inpatient clients. In outpatients, you’re doing more interview-type assessments. You’re not helping someone have a shower.

BLOOM: What did you learn in your new role?

Nancy Campbell: I had worked with a lot of children with cerebral palsy on the unit, but moving into outpatient work expanded my knowledge about treatment options.

It’s too bad we don’t have a better meshing between inpatients and outpatients, because what we could learn from each other would definitely improve care on the units.

BLOOM: Do you mean in terms of treatments or your attitude to nursing?

Nancy Campbell: Both. If I went back to inpatients now from a more therapy-focused second floor, I would change the way I nurse. Knowing that these families go home and have their own lives would encourage me to empower the families more.

Sometimes I think we felt on CCC we were helping families by taking over the care of the child, because we knew the parents were stressed and tired. But in some ways, that’s disempowering, because maybe they felt they couldn’t do it as well, or we didn’t trust them to do it, or that we were watching and they felt judged.

I’ve learned a lot by seeing families take care of their kids at home. If I was on CCC now, I would help more by doing less. I would let the families figure things out with support. I’d encourage parents to really be in charge of care and encourage the kids to do as much as they can for themselves. I wouldn’t be so worried about time constraints.

BLOOM: What kind of constraints?

Nancy Campbell: Like a child needs to learn to brush his teeth, but the school bus is leaving, so you do it quickly for him.

BLOOM: Anything else?

Nancy Campbell: There are so many opportunities to share knowledge between inpatients and outpatients. So if I have a child with spina bifida on the unit and I know there’s an expert in spina bifida downstairs, I should reach out. Too often we work in isolation on the units. We need to remember to engage with the rest of the services in the hospital.

BLOOM: What do you think prevents that?

Nancy Campbell: It’s not knowing what we don’t know, and not fully understanding the depth of knowledge that our colleagues possess.

BLOOM: What advice would you give a nurse just starting out at Holland Bloorview?

Nancy Campbell: To be open-minded and creative and to let families help drive the decisions you make. To figure out what the family’s vision of their child is, and help them get there, rather than putting your vision of what 'should' be onto the child.

BLOOM: I guess that involves a lot of listening.

Nancy Campbell: Yes. And it’s not about performing tasks, it’s about quality of life. If you perform a task but the child is no happier or healthier at the end, then the task isn’t of any value.

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