Nurse researchers at Case Western Reserve University have launched an extensive study to learn how parents can best deal with the overwhelming stress of caring for children who must survive on feeding tubes, ventilators and other medical technological equipment.
The new work at the Frances Payne Bolton School of Nursing is being funded by a four-year, $2.2 million grant from the National Institute of Nursing Research, a division of the National Institutes of Health.
Researchers believe it is among the first randomized controlled clinical trials to include objective measures of both sleep and stress patterns, plus track emergency room and hospital visits, for these parents. Some will be given access to a suite of web-based tools that improve coping skills to manage stressful situations that arise while caring for their child.
The research builds on more than two decades of studies by Case Western Reserve Principal Investigator Valerie Boebel Toly, an assistant professor of nursing, and several collaborators. They include Jaclene Zauszniewski, the Kate Hanna Harvey Professor In Community Health Nursing who developed and trademarked the cognitive-behavioral intervention being used in this four-year study of 200 parents, and Carol Musil, the Marvin E. & Ruth Durr Denekas Professor Nursing and interim dean at the School of Nursing.
Children who depend on medical technology—feeding tubes, oxygen, or mechanical ventilators and other devices—to stay alive represent about 20 percent of all children discharged from hospitals nationally. But they account for about 60 percent of all health-care spending, Toly said.
Highly stressed parent caregivers
Since parents provide most of the at-home care for tech-dependent children, Toly said, they often suffer most critically and chronically from adverse health effects of stress that accompany that care.
The new study, in partnership with physicians John Carl at Cleveland Clinic Children’s and Kristie Ross at University Hospitals Rainbow Babies & Children Hospital, will examine the impact of caregiving on parents’ physical and mental health over nine months.
Specifically, researchers will test and measure the effect of the intervention on self-managed positive health practices, such as exercise, proper nutrition, relaxation, annual checkups, safety and sleep.
Researchers are expected to begin enrolling parents—either fathers or mothers, but not both for any given child—for the study in early summer and continue adding about a dozen per month.
Toly said the work is personal for her after spending several years working with families as a home health-care nurse. While some of the children have disorders like cystic fibrosis or muscular dystrophy, many don’t fit into familiar categories, she said.
“But all of them have complex chronic conditions with medical technological equipment needs to stay alive—so they’re everywhere, but nowhere,” she said. “These are the families that don’t get a break, and this research can help us develop the tools to give them that break.”