University of Toronto
One-year CRHP Fellowship Award and Grant
Improving sleep for caregivers who care for children on ventilators
For her doctoral research at U of T Nursing, Krista Keilty is studying the sleep of parents who have a child who requires long-term ventilation. “I’m looking at what happens at night for a family caregiver of a child with medical complexity who may have a tracheotomy and invasive ventilation or bi-level ventilation, or is oxygen dependent,” she explains. “Their typical sleeping arrangement is not entirely typical.”
Keilty received a grant and a fellowship to further her research into how sleep (or lack of it) affects the caregivers’ health and quality of life, and lead to the development of targeted sleep interventions.
In families with a child on long-term ventilation, some parents transform their dining room into the child’s bedroom so there’s enough space for the ventilation equipment and also a cot. At night, a parent will lie on the cot to monitor the child and ensure the breathing equipment is functioning properly. “These families have the opportunity to have a night nurse, but not every night,” explains Keilty.
All ventilation equipment has a built-in alarm to notify the caregivers if there is a malfunction, but the alarm can go off when it shouldn’t and interfere with the parents’ sleep. Sometimes when the alarm should sound, it doesn’t. “Families live with the risk that alarms can fail,” says Keilty. “While the parents sleep, there is the worry that their child could die if the equipment fails.”
“Lung Association funds will assist with the purchase of equipment, supplies and employing personnel to help run the study,” said Keilty. “The grants will also help ensure the knowledge gained from this study is widely communicated to inform clinical practice, health policy and future research.”
Keilty hopes her research will lead to interventions that support families in getting a precious night’s sleep.
(Reproduced with permission from The Pulse magazine.)