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.