When Being a Parent Means Being a Nurse
Two decades ago, Regena Spratling started her nursing career at Children’s Healthcare of Atlanta, working in a technology dependent care unit. The kids there — who ranged in age from babies to teenagers — all had complex, chronic issues that made them reliant on medical equipment like ventilators, tracheostomies or feeding tubes.
Children who require this type of care don’t spend their lives in a hospital, though. They go home, they attend school — bringing the breathing machines and feeding tubes along with their backpacks and pencil cases.
“For families, it’s like having an intensive care unit in the home,” says Spratling, associate professor in the Byrdine F. Lewis College of Nursing and Health Professions. “A lot of people don’t even know this exists until they’re in the situation. Parents think, ‘I go home with all this stuff? How do I do that?’”
Caring for children who require constant monitoring and technology often takes a toll. As a nurse, Spratling saw many parents who struggled with anxiety, depression and a lack of confidence in their ability to provide proper care.
“The parents are managing this equipment on the level of a nurse, on top of dealing with their kids’ appointments, medications and everything else,” she says. “In some cases, if anything goes wrong, it’s life or death.”
To better support these parents, Spratling is developing a series of short educational modules. Her project, which is funded by a $423,314 grant from the National Institutes of Health, is designed to help caregivers navigate the technologies as well as common symptoms like coughing or wheezing.
“We’re all looking for resources online these days, and we want to provide quality information that is accessible regardless of where you are,” says Spratling.
She adds that the modules are not meant to replace the education parents receive when their child leaves the hospital. The assumption is that parents have been trained to care for their kids, but may need a refresher or reminder of what to do in a given situation. The modules can also educate caregivers about a change to their child’s care, like going from one type of respiratory support to another.
Spratling will recruit participants for a feasibility study to analyze how the modules affect caregivers’ symptoms of anxiety or depression, health literacy, competence in providing care and the ability to manage family issues at home. After that, she hopes to make the modules more widely available, translate the content into Spanish and create additional modules based on user feedback.
“In my experience, these families and kids are very perseverant,” says Spratling. “But they are also very understudied and underserved. It’s a small population, but the needs are huge.”