Why parents get hooked on 'normal'

By Louise Kinross

On Friday I did a narrative workshop with developmental pediatrician and psychology fellows at Holland Bloorview.

Something that emerged in the comics the fellows drew was how parents express their hope that their child will be “normal”—even years after receiving a disability diagnosis. 

It got me thinking about how the word normal is really a code word for “value.” In our culture, normal is valued, and disability is not. 

When my own son was a baby and toddler (but not toddling yet), I would always wait until our visit with the pediatrician was ending, before blurting out: “Will he lead a normal life?”

My son has a rare genetic condition, and the doctor had told me that he couldn’t answer that question. There were only 60 reported cases of his syndrome, and the children were affected in different ways. 

Yet I continued to ask the “normal” question—always at the end of the visit—knowing the doctor probably thought I was dippy, or hugely forgetful. Why?

It was years later, working at Holland Bloorview, when it hit me.

As a young mom with a child with disabilities, I didn’t want my son to be judged by others. When I was out and about, I felt I needed to put on a brave face to influence how other people saw him. It was only in the privacy of the pediatrician’s office that I let my guard down and shared my concern for my son’s future. That is the tremendous power that health-care workers hold.

Parents and patients honour doctors, and other therapists, by sharing their greatest fears and feelings of inadequacy.

So why did I repeatedly ask if my son would lead a normal life?

Because what I wanted to hear was that my son had value. I wanted to hear that I had a great son, and whether he led a normal life or not, that wouldn’t change. I wanted the doctor to affirm what I saw in my son. I wanted to hear it from an expert. But I didn’t know how to ask for that. 

A couple of years ago there was a story in The New York Times about these so-called doorknob moments. They occur at the end of a clinical visit, just as the doctor is putting his or her hand on the doorknob to leave. The parent, or patient, waits until the last second before they have the nerve to blurt out what is truly troubling them.

“Often, the most important service we provide a patient is not what we think it is,” wrote Dr. Adam Cifu in an opinion piece last month in The Journal of the American Medical Association. Dr. Cifu, who works in the department of medicine at the University of Chicago, suggests that the emotional support and space clinicians offer patients is as important as “clinical acumen or medical knowledge.” 

His piece reminds me of a finding of our Holland Bloorview study looking at whether a narrative group promoted empathy in inpatient nurses. 

Prior to the six-week group, 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, the nurses prioritized medical tasks over emotional support, describing the latter as “outside my nursing hat.”

After reading, writing and drawing patient and clinical stories, the nurses elevated 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.” 

Part of listening to parents is trying to hear the meaning or emotion behind their words (which is not always self-evident). 

Every parent wants to know their child has value and is valued by others.

Oftentimes, in the early days of a child’s diagnosis, parents pin their child’s worth on hopes for future change—that the child will walk when they’ve been told this is unlikely, or defy expectations in some other area.

The problem with hope is that it’s never now—and it always hinges on the child better squeezing into what the culture deems normal.

What about the child we have right in front of us? The way we think about human value is a choice. Why not choose to see value in this child, right now, just as he or she is? Can't value be inherent in a child, simply because they're human? 

When a parent starts talking about their hopes for their child's future, don't forget to also ask about their child's value—now. If the child isn't able to communicate easily, ask parents what makes this child tick. What do they love? What do they hate? What kind of personality do they have? What does the parent most enjoy doing with their child? When are they most happy together? What does the parent most love about their child?

Don't forget to talk about the cool qualities in the little patient you see in front of you. Because every child has them. Don't forget to tell parents they have a great kid.

When parents get hooked on their child being 'normal,' what about sharing this idea that they can choose to see their child's value as inherent, as unchangeable, as their birthright? Your child has value—right now—is a powerful message.

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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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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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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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I feel joy

The following is a found poem created last night by the narrative group for parents of children with brain injury at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child..." In the narrative group, parents read, write and draw about parenting their children as a way to build self-compassion, resilience and peer support. While parents attend the group, their children participate in a writing club at the hospital.

I feel joy

I feel joy when my child has fits of laughter.

I feel joy when my child is getting better, is smiling, is eating well and is hugging me and saying 'I love you, Mommy!'

I feel joy when I see my daughter happy. I hope she lives happily every day.

I feel joy when my child laughs out loud... and smiles with her eyes.

I feel joy when my child smiles, gives me a giant hug and a squeeze, blows me kisses and says 'Mommy, I love you.'

In speaking about how life changed after her child suffered a brain injury, one parent said:

"We were a typical family who were sort of wanting to live the right way. We wanted our children to attend the right school, so we moved to a better school district. We were wrapped up with our neighbours and with moving and with progressing. We had all of these plans down the road. In six months there was a birthday party, and in a year a vacation.

Looking back, these were things that didn't matter. 

When your child is very ill and you could lose them, none of that matters. No amount of money in the world, or success in the world, can trump health.

I can't predict tomorrow, I can only predict today. It simplifies life. It means letting go and accepting what is. We have now."

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A letter to myself

We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto.

Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview, then do a writing or drawing prompt, and discuss their work. 

The group was made possible by Holland Bloorview's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit children and families to life.

Below is a parent's response to this writing prompt:

Imagine that you've just received your child's diagnosis. Write a letter to your younger self, knowing what you know now, and share your best advice.

A letter to myself

Don't be alone in this. Make sure you have someone to be your cohort, your side kick, the bad guy, the good guy, whatever it is that you need to balance yourself out.

Find the agencies that say they know the most about the disease, the syndrome, the symptoms and visit them, online, in writing, in person. They have seen it all. Don't wait for anyone to come to you.

Always have a good paper trail and learn to file. File your contacts, every name, number and e-mail and put the paperwork in a file. There will be a day when you need to pick it all up in a hurry and start again.

Remember yourself. Remember your relationship, why you became two, and then three or more. Allow yourself and your partner to grieve differently, to feel differently than each other about the diagnosis and the outcome.

Do the research, try the therapies, but be realistic. Get to know the researchers, the scientists, the people behind the doctors. They want to make it better and need to see the thing they treat, to name it and see it. 

Spend real time with your other children. They will not be okay. You can not be normal, their life with you will not be normal, sharing your grief and tears with them is not always caring, it can be scarring.

When people say respite, take it, do it. Your child will have more people looking after them that sleep longer than you do, work less hours than you do.

If you think therapy is worth it, go do it, find the money, go with your gut, even if it does not fit with your partner's gut. There is nothing worse than getting to a point when you wish you could go back.

And always look after yourself as best as you can. Before you put others first, oxygen mask on you, then the next person.

Try and keep up whatever it was (before kids) that made you delightedly happy, even if you only do it once a year. Try not to do it alone. 

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I feel joy

The following is a found poem created this week in the narrative medicine group for parents at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child ..." In the six-week narrative group, parents write and draw about their emotional reactions to parenting children with disabilities as a way to build self-empathy, resilience and peer support. The group is made possible by the hospital's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit clients and families to life.

I feel joy

I feel joy when my child turns towards me, lifting her eyebrows and curling her lips upwards to show me her teeth, as if she is to cry helplessly with laughter,

I feel joy when my child is happy, smiling, accepted and not judged by the society,

I feel joy when my child sings too loudly and laughs,

I feel joy when my child is happy, successful and contented, and has achieved what she aimed for,

I feel joy when my child’s smile looks and feels like sunrise.

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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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A doctor reveals her hidden disability

By Louise Kinross

Dr. Paige Church is a neonatologist at Sunnybrook Health Sciences Centre and a developmental pediatrician who sees children with spina bifida at Holland Bloorview. Last Monday, she wrote about what it’s like to be both a doctor and a person with a disability in a JAMA Pediatrics article. Paige has spina bifida, and she begins the riveting piece with her own medical record.

BLOOM: You and I did an interview a couple of years ago, but you decided it wasn’t the right time to share your story. What changed?

Paige Church: I think our conversation instigated a lot of reflection, and then maturity and time added perspective. I had to think and think and think about how to tell the story in a way that maintains dignity and privacy, but that draws attention to the issues that are woven into it.

BLOOM: What do you hope health professionals take from it?

Paige Church: That we need to start being more individualized, and not textbook, in conversations with parents whose child may have a disabling condition. Trainees at times have found it frustrating that there’s no formula. They want to cling to ‘If this happens, then this is what I do.’ I think when it gets into conversations around disability and living with x, y or z, it isn’t that easy to formulate that life into a simple package. Messaging that it is simple is a mistake.

BLOOM: How were you taught to counsel parents about a pregnancy that involves a disability?

Paige Church: There are essential components that need to be conveyed, but we make the mistake of simplifying it to such a degree that you can do it the same for everyone. We need to focus a lot more on exploring [each] family's structure and values and perspectives. I might spend an hour just talking to one couple about who they are: Their jobs, their values, their religion, their extended family, their thoughts about disability.

And then convey essential information in real-life terms, not medical labels that often don't make sense. We need to describe the day-to-day outcomes that are possible, and explore how this information fits into a family and their resources and challenges. There isn't a specific recipe for any given condition. It has to flow from the questions, concerns or insights that [a particular] family shares.

I worked with and learned from Adrienne Asch, who was an American bioethicist and disability advocate. She taught me a lot. She challenged me to think about how families are not clubs. You don't pick your members. Certainly I want children to feel loved and accepted and that factors into my counselling significantly.  

BLOOM: In your article you talk about how the effort to appear normal in your life and work is exhausting. What motivated you to want to appear normal?

Paige Church: I might be making a sweeping generalization, but I think for kids who grow up with a disabling condition like mine, where there are no outward signs, you have two paths to walk when you get to school. One is that the school treats you like everyone else, and you keep quiet about your extra issues. The other is to start sharing information that is quite private. When you get into bladder and bowel management, how do you do that in a way that isn’t stigmatized or bullied? As a child, I think I just perceived the stigma and decided to go the way of least resistance, and keep this all very quiet.

BLOOM: I’ve heard some unbelievable stories about children who are incontinent, and how they don't drink for the entire school day to avoid having an accident.

Paige Church: Yes, this is a strategy that's used. It's not a good one, but it's reinforced because it works, at least in the moment. I certainly have used it myself. It’s a strategy we use when we can’t afford to have problems. When I had an appendicocecostomy, my surgeon said ‘Why am I doing major surgery on you?’ I said ‘Do you realize that I've been limited to eating a handful of crackers for the whole day? I can’t afford to have an off day. I can't afford to not be available to go into an emergency in the NICU.’

BLOOM: I wasn’t clear on what that surgery was.

Paige Church: The distal end of the appendix is cut off to create a hollow tube and channelled through the abdominal wall to make a stoma you can put a catheter into. This is an option for some children with spina bifida and other conditions associated with fecal incontinence to evacuate the bowel once a day in a controlled setting. 

BLOOM: But before the surgery you didn’t eat during the day? So you were starving?

Paige Church: I’ve got more dental bills than I can count. You eat candy most of the time.

BLOOM: Doesn’t it seem unfortunate that a person has to have a major surgery for incontinence?

Paige Church: No. It was life-changing for me.

It takes the pressure off. It gets you back to being like everyone else with a degree of control over these private functions. It still isn’t perfect. But if six out of seven days are more controlled, it allows you to focus on other aspects of your life, without being consumed by worry.

BLOOM: Because you have firsthand understanding of spina bifida, you must have had unusual conversations with youth with spina bifida, in the early days before you shared about your experience.

Paige Church: Early on I looked like I was a real expert, which was kind of nice. I knew a lot of the intimate details. Over the years I’ve learned there’s no way to say ‘I have spina bifida, too,’ because there are a thousand different types and many ways a person can be affected.

As a resident, I once shared when a baby was just born that I had spina bifida. But the baby’s level of involvement was different than mine. It set the stage for expectation, and, as a result, I worry that it did more harm than help with bonding.

Now I share my story on an individual basis. It may be with parents when their children are toddlers. Or with older children who are struggling with some aspect of the condition, and I can share my story to lend insight.

BLOOM: In your article you talk about how the medical world views disability in a black and white way as a negative. You were taught that telling someone they have a disability is equivalent to telling someone they have cancer or will die.

Paige Church: Absolutely.

BLOOM: What I got from the article was that your experience of disability is the opposite of simple. That’s it’s rich and complex and full of ambiguity.

Paige Church: Yes, and that richness and ambiguity is not captured anywhere in medicine. For every horrible thing I’ve experienced, I can say there are five things that have been great. For example, if I didn’t have spina bifida, I wouldn’t have my daughter, who we adopted. And my life would not be full without her. And I wouldn’t want my own child in a trade for her. If I could have, I’d have had more of her.

BLOOM: You note in the article that your challenges with spina bifida helped you pick a fabulous husband.

Paige Church: It shapes who you are. Because of some of my obstacles, I grew and changed. I kept looking and waiting for someone who wouldn't see the challenges, but rather would see me.

BLOOM: You say that you provide counselling that is balanced, sensitive, thoughtful and individualized, rather than objective. What does the word objective mean in medicine?

Paige Church: It’s supposed to mean you don’t have any bias. You’re not bringing into the discussion anything that is subjective or is your interpretation. That’s not necessarily a bad thing. But it does become a problem when you think about the fact that it’s impossible to not have some degree of inherent subjectivity.

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A novel drawn from light and loss

By Louise Kinross

In 2011, cartoonist Tom Hart was living an idyllic life in Gainesville, Florida. While his wife Leela, also a cartoonist, worked on a book, he spent time with his daughter Rosalie, not yet 2—bike-riding, visiting ducks in the pond, tracking the moon, painting watercolours on the back-porch.

Then Rosalie died suddenly and unexpectedly.

Tom did what he'd always done: he began writing, furiously, and then drawing, about it. His graphic memoir Rosalie Lightning was released last month.

BLOOM: How soon after Rosalie died did you start writing about it?

Tom Hart: I wrote to stay sane pretty instantly. When I wasn’t walking around the neighbourhood with my wife, or sort of lying down on the grass or in bed, I was writing mostly. In some cases it was just recording what was happening. More often it was trying to understand something and stave off despair.

We did a bit of travelling to get out of town—because town was so hurtful—so I kept the writing and the notebook going. After about five weeks I had a binder of notes. I felt it was time to stop, partly because I was repeating and partly because what happened at the end of the book was that this little girl came up to me, and that was a sign that I should stop writing.

I took some time off and then began the process of turning it into a narrative, and that took about three-and-a-half years.

BLOOM: What role did drawing and writing play in grieving for Rosalie?

Tom Hart: I’ve always used comics—this mixture of words and pictures and cartoons and boxes as a way to navigate the emotional world. Even as a child my first memory at age seven or eight is of tracing Peanuts—Charlie Brown. I later realized that I was really drawn to the emotional content: people were screaming and fighting and there was lots of punching. It was a way I learned to comprehend the larger emotional world. So unconsciously, throughout most of my life, I’ve always taken whatever I’m feeling and tried to wrestle with it on the page.

BLOOM: How did drawing help you focus on all of the details you wanted to remember about Rosalie?

Tom Hart: I wound up wanting to focus on how lively she was, and how the time up till she died was so fun and so magical. I wanted to recap it and recount it for people. It seemed strange, when I looked back at it, to want to draw all that stuff. In a way I think I was trying to summon her back. And again, since I have drawn cartoon characters for so long, it seemed like the most direct way to try to capture her spirit somehow, or to connect to her spirit.

BLOOM: What’s the main theme of the book?

Tom Hart: It’s trying to show a person’s mind as they work from a state of complete shock to some sort of comfort or integration with their new experience. Since reality has been so uprooted, it’s trying to find signs from outside of how to exist in this new reality, of how to work within a new world.

BLOOM: It seemed like the book was alternating back and forth between the beauty and pain that comes from the mystery of life. So on the one hand, we see Rosalie’s reactions of wonder to things like the 'big moon' or how acorns contain what will be a tree. But on the other, we feel your unbearable loss when she dies.

Tom Hart: It’s nice that you came away with that. I did the book very intuitively. Had I thought through what you just said ahead of time, it would have been a good structuring device. The world is big and full of joy and sorrow and bouncing or oscillating between the two is what I was trying to capture. In doing the book I really just followed my nose.

BLOOM: I think when a child has a disability, or an illness, or dies, it’s hard for parents to accept the random nature of it. In your book you go over the events immediately prior to Rosalie’s death. It seems like you’re trying to decipher the 'why' or the meaning of it. Was there a cause? Should you have anticipated it? Can you talk about that?

Tom Hart: The world is full of random, horrible circumstances and there’s not a lot of justice in the world. There’s not a larger justice in the world. To be honest, in my case I think I was able to do this book because it was so random. I think if she had had some prolonged illness, or worse, if there was a violent cause of her death, or someone to blame, I would have been a lot more immobilized.

I think a lot of what the book was about was trying to come to believe that there was cosmic purpose, because it seemed so cosmically ordained in some ways. In a weird way it was empowering that it was random and sudden and without an immediate way to comprehend it. There was nobody to blame and no blame on a personal level. That enabled me to stay focused on her spirit and on my moving on.

Early on I intellectually understood I needed to accept it, because there was no going back. It happened. Of course it’s very easy to say things intellectually, or to write them, or in your best moments to believe them. More often than not our emotional bodies are so much slower. For me I knew I had to find a way to exist with Rosalie in my memory.

It took me three years to incorporate those five weeks of writing—the lessons and ideas that came out. At the end of finishing the book I do feel like I’ve integrated that experience, so that I no longer live in denial of it.

BLOOM: Over time did your need to find a meaning for the tragedy change? Or did you just stop asking the question?

Tom Hart: If there’s a larger meaning, I can’t comprehend it. I’m not a religious person, but I have an inclination toward the spiritual. Every major religion in its own way says you can’t know God’s reasons. It’s too big for our consciousness. It’s unknowable.

And the sad thing is that it’s mostly injustice down here on the physical plane. At some point everybody has to find the balance between seeing that clearly and moving on anyway. They have to square that with their own drive to stay alive and care for their loved ones.

BLOOM: Time is an important theme in the book.

Tom Hart: Is it? I haven’t read the book in a while.

BLOOM: I guess because before Rosalie died time was moving in the way you expected, and you had a sense of how it would continue as she grew up. You had dreams of her future.

Tom Hart: There was this horrible ending of what seemed like ordinary life. Up till then, time made sense. When this happened, there was no time. Time became different. There was only 'before' or 'after,' and how time was measured seemed different.

BLOOM: There’s a panel where you write 'the hospital – no I don’t like that part.' Were the professionals at the hospital compassionate in the care they gave you?

Tom Hart: There was never any hope, but for the most part everybody was compassionate.

BLOOM: Your depiction of Rosalie brings her to life. She’s such a character—from the way she spoke, to the way she moved, and how she brought what you read together in books or saw in movies into her own life.

Tom Hart: That’s really nice. It was part of my plan, but not the biggest part. I think mostly the book was me trying to get through it. But early on someone said to me that a person never dies, or their spirit never dies, until the people they’ve touched die.

It made me realize I had an opportunity to keep her spirit alive, especially in the way she was so alive for me, so vivacious. So it’s something I wanted to do—not exactly capture her spirit, but have it come through on the page.

And I needed to have that connection with her. It was very strange to draw her alive and happy. It was such a contradiction. Drawing those images was fun and delightful and horrible.

BLOOM: Did you have any hesitation about writing such an honest book?

Tom Hart: I didn’t have any hesitations about it. I’d been making books or stories for so long and I was so utterly broken open for that entire time that it didn’t matter whether or not it was too revealing or I was being too honest.

BLOOM: What do you hope people take away from it?

Tom Hart: I think I joked to another interviewer that I have such a long history of no one reading my work that I don’t have many expectations at all. I needed to do the book for my own sake and it really helped me in my grieving.

I think I needed to integrate the experience so it was no longer something I denied. I intended to do that in the way I’ve most dealt with the world, which is through writing and drawing.

For three years I was forced to focus on that time when my life changed so dramatically and become that new person. I became the person that has this in his past and has this experience in his heart. In general I did the book for my own healing.

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