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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Parents of ventilated kids risk own health due to sleep loss

About half of the parents and professionals who've filled out our BLOOM survey so far have asked for more stories on families raising kids with high medical needs. Here is a start!

By Louise Kinross

As a nurse practitioner who’s supported hundreds of families bringing home a child who uses a ventilator, Krista Keilty knew these parents struggled to get a good night’s sleep.

But no one had ever measured the difference in their sleep compared to that of parents raising children without health issues.

So the SickKids researcher conducted a study that used a wristwatch-like device to measure sleep and wake activities over a week in 42 parents of kids who use medical technology and 43 parents of kids who don’t.

“We found the parents of kids with medical complexity sleep 40 minutes less per night,” Krista says. “When you think about that difference over the span of six years, which is how long the families had on average cared for their child, that’s three times as many sleep-deprived nights or 208 less full nights of sleep in that period. That’s a large sleep debt you can’t get back.”

In addition to sleeping less each night, the sleep of parents of kids with high medical needs varied widely from night to night. “Their sleep was all over the place. It means they might get to sleep at a reasonable hour, which is 11 p.m., one night, but then not get to sleep till 1 or 2 the next night, and then get up at a different time each morning.”

Twice as many parents of kids using technology were identified as poor sleepers, waking up more and not feeling rested in the morning. They also had three times as many nights when they got less than six hours of sleep.

“These caregivers are needed by society and by their children to be healthy and well and capable of caring for them for years to decades at home,” Krista says. “Yet the sleep deprivation they get predicts these parents will experience negative downturns in their health much earlier than other adults.”

Lack of sleep puts these parents at risk for heart disease, obesity and pain and may compromise their immune system, Krista says. “We also know sleep deprivation over time influences mood—possibly causing depression and anxiety—and the ability to complete tasks that require quick judgment and decision-making. The data would suggest the parents of kids with medical complexity are at increased risk of [car] accidents.”

The study found that three times as many parents of kids with medical complexity “had a level of depressive symptoms that means they may have clinical depression,” Krista says. “When making study home visits I had a number of conversations with family caregivers who would talk quite openly about how difficult it is for them sometimes to live with this ‘blue’ mood they have on a day to day basis.”

The reasons for sleep loss in parents of kids using technology requires further study, Krista says. “They can be categorized into parents who are so vigilant they can't sleep even when they have the chance, or have anxiety or worries or poor sleep habits themselves, or poor sleep habits in the child that result in them waking up and needing to be consoled. The care needs can also be so high that parents are up every two hours on a good night to turn and reposition their child. There are also environmental factors, such as the number of nursing hours families get and how the technology itself may intrude on sleep—for example, waking parents when false alarms go off.”

The nursing hours families in the study received ranged from zero to 100 hours per week, with parents getting about two nights of coverage a week on average. “This means that for at least five nights a week they are managing on their own.”

Not only do parents of kids using medical technology need more sleep, Krista says, but they need better quality and more consistent sleep.

In addition to measuring sleep and wake activities in the parents and children, the parents in Krista’s study answered questionnaires about depression, sleepiness, fatigue and quality of life.

The degree of sleep disturbance experienced by parents of kids with medical complexity may interfere with parents’ ability to work outside the home and their motivation to make stay connected to friends, Krista says. The parents of kids with technology in her study were more likely to be single, underemployed and have a lower household income.

Krista says the study is a first step in finding effective sleep interventions for parents of kids using medical technology. “In order to plan an intervention, we needed to quantify and characterize the sleep problems in this population so that we could think about what measures to look at in future, what treatments to try and how big a sample size would be needed.”

Previous studies have always relied on parent self-reports about sleep habits, which aren’t reliable.

Krista has already launched a second study to assess Ontario parent and home care providers' ideas about the causes of sleep disturbance and what interventions may remedy them. Results from the second study will guide future research to test a specific intervention.

Krista Keilty is nurse practitioner and project investigator with the Centre for Innovation and Excellence in Child & Family-Centred Care at the Hospital for Sick Children. She is also a fellow in Innovation in Pediatric Homecare and a CIHR post-doctoral fellow in Sleep and Biological Rhythms.

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When sleep eludes your child

Imagine your six-year-old child gets up at 1 a.m. four times a week, and won’t fall back to sleep till 5 or 6 in the morning.

Relatives want you to visit, so you book a hotel and make the three-hour drive. But at 1 in the morning the first night, your oldest son wakes up, begins pacing round the hotel room, and wakes up his younger brother. Knowing nobody will sleep this night, you pack up your stuff and hit the highway for the three-hour drive home at 2 in the morning.

This is real life for Bethan McCutcheon and her husband Sean, whose sons, Tecwyn, 6, and Tathan, 5, have Angelman syndrome.

Sleep disorders are common in this genetic condition, and according to a Belgian study include falling asleep later, repeated night-time wakings, and reduced rapid eye movement or deep sleep. Despite little sleep, children are alert and active during the day.

While Tathan sleeps most nights, Tecwyn is often up for four to five hours in the middle of the night. I interviewed Bethan to find out how the family copes on such little shut-eye.

BLOOM: When did Tecwyn first develop sleep problems?

Bethan Mccutcheon: It was at about a year old, when he stopped napping during the day.

BLOOM: What kind of sleep problems does Tecwyn have?

Bethan McCutcheon: We can put him to bed at 9 and he’ll get up anytime after 1 in the morning. In a nanosecond, he’s upright, down the hall, squealing and excited to start the day. He’s very happy. He may go back to sleep at around 5 or 6 in the morning, or he may not.

BLOOM: What do you do during the night?

Bethan McCutcheon: I often take Tecwyn back to his bedroom and put the indoor lock on his door and stay in the bedroom with him. He’ll pace in his room and take stuff out of the closet and dressers, and occasionally read a book. We have the room set up to be safe. I stay with him, usually for about four hours, till he’s gotten it out of his sytem, and then I can sometimes get him back to sleep at around 5 or 6. If not, I wake my husband up at 5 and I go to bed for two hours while Sean takes Tecwyn down to the playroom. He wakes me at 7 so he can get ready for work.

BLOOM: What is most challenging about Tecwyn’s sleep problems?

Bethan McCutcheon: It can be exhausting. You have to work as a team with your partner and be honest with what your limits are. If I’m tired, I do something about it. After a bad bout of sleep problems last year I drove to my parents’ house, three hours away, and showed up at midnight and went to bed for 16 hours. If we have a bad week where I’m up on consecutive days, Sean takes the kids on Saturday morning and I sleep in. We’re fortunate in that I home school the boys, which means if I can get Tecwyn to settle at 5 in the morning, he can sleep until 9 or 10. A lot of families don’t have that flexibility. They have to get back up at 6 in the morning to get the kids off to school. I can see why marriages fall apart over this. Not only are you dealing with everything about your child’s special needs, but you’re doing it with no sleep. We’d like to have a second source of income, but there’s no way I could work from 3 to 11 because then I could be up all night. Sean tried to drive a snow plough as a second job but if he had to get up at 4 in the morning, he might have already been up all night.

BLOOM: What strategies have you found helpful to promote sleep?

Bethan McCutcheon: We do a bedtime routine each night and on my answering machine I ask people not to call the house past 7:30. That’s when they have a nice warm bath, are powdered and lotioned up, brush their teeth and take their reflux medicine. Tathan can go straight from bath to bed, but Tecwyn likes to come down to the playroom to sit on the couch and snuggle and watch half an hour of the Disney channel. Then we bring him upstairs and one of us lay down with him until he falls asleep. That could be within 15 minutes or longer. Sometimes when Tecwyn gets up in the middle of the night I’ll repeat the whole bedtime routine again – but at 3 in the morning. I have a lock on the inside of his door just in case I fall asleep, but I never do. I stay with him and let him do his thing and I lay on his bed. If I’m very tired I’ll get Sean, but I try not to get him at first.

BLOOM: How do you manage on so little sleep? Doesn’t it affect your mood?

Bethan McCutcheon: It’s become our norm and most of the time I’m upbeat and positive. We have a system that works for us and allows us to catch up on sleep and plan the day according to how Tecwyn has slept. It would be very difficult for us if I had to work and take the kids to school at 8 in the morning. The only time our situation is really hard is when we’re away from home. Our family lives three hours away and wants us to visit, but we don’t have the coping mechanisms there – the set up of the house and the playroom – that we have here, and everything falls apart. We’re also limited in that we can't go out together, like on a date night. The only time we tried, Tecwyn stayed up with my parents until we arrived home at 2 in the morning. And we can't go out on our own. Sean can’t go away for a golf weekend and I can’t go out for a girls’ night. We’re a big part of each other’s coping mechanism and we know if one of us goes out we’re throwing the other person under the bus.

BLOOM: Do you find people understand Tecwyn’s sleep problems?

Bethan McCutcheon: Unless you’re living this, it’s very hard to understand. People give us all kinds of advice and sometimes people make negative comments. It’s hard for people to believe that a child can be up a good part of the night and still be the Duracell bunny the next morning. I always envisioned my life would be different at this age. I had a goal of becoming a school principal by the time I was 36. But maybe this makes sense of why I became a teacher. It wasn’t to teach other kids, it was to teach my own.

BLOOM: What advice would you give other parents whose kids have sleep problems?

Bethan McCutcheon: My biggest advice would be to be honest with yourself and come up with a plan that works for you and your partner. Don’t compare yourself to what other people are doing or how I cope. For some families, it’s best for the child to take medication to lull them. Other families use specially-designed beds that are enclosed at the top, to keep their child safe. One dad adapted it and put a TV inside so the kid can watch DVDs when he gets up. When I showed a flyer about these beds to some friends and relatives, people gasped: “How could you put your child in a cage? That’s disgusting.” Wow. They just don’t get it. For parents coping with these issues, the enclosed bed is safety and peace of mind. Some parents try special diets or use heavy-duty shutters in the room or get respite so they can have a break. In addition to coming up with a plan that works for your family, I’d suggest connect with other families. That can give you a feeling of normalcy and help you cope. We’re on a google group for parents of children with Angelman in Ontario and we’re always sharing stories about what to do and what’s helpful. We laugh about how we have mental maps of every squeaky floor board in the house, and how to step around them.

The McCutcheons live in Haliburton County in Ontario. They attended an Angelman conference in Orlando last year where a playroom was made available 24 hours a day to accommodate children who were up during the night. The Canadian Angelman Society conference is being held in Montreal in July and includes a workshop on sleep disorders.

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Sweet dreams

I recently heard about a family with two children with disabilities. Dad sleeps with his son with autism in one room, and mom sleeps with the child with a physical disability in another room.

Sleeping with a child past the time considered normal is part of life for some families of children with disabilities – for a number of medical, behavioural and developmental reasons – although it’s rarely talked about.

Maybe your child has seizures or another life-threatening condition. Maybe your child has a sleep disorder or muscle spasms that jolt her awake repeatedly. Or maybe, like me, your child has physical and developmental disabilities, and chronic pain, and you find it difficult to be hard-nosed about who sleeps where when he slips into your bed in the middle of the night.

My son is 15 and the size of a five-year-old. He has frequent joint pain and can’t speak, and his ability to use sign language doesn’t match what goes on in his head. He can’t fully express what he’s feeling. He can’t tell me everything that’s going on.

So when he brings a book to my bed to fall asleep at bedtime (and is later carried to his bed by his Dad), or slips into our king-size bed after sleeping a few hours in his room, my first instinct is that I want to provide comfort to a boy whose everyday life is hard.

At the back of my mind, critical thoughts may jostle for attention: “He’s 15-years-old. It’s not appropriate that he sleep in your bed. Your job as a parent is to create independence. What will you do when he’s an adult?”

But they usually fall away quickly because my primary goal is that he feel safe, secure and sufficiently relaxed to sleep.

It’s not every night that this happens. But it can be a few times each week. Or sometimes it goes in spells, where he’ll sleep well in his own bed for weeks at a time.

Am I wrong?

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