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How do you teach children with serious, chronic health conditions the skills they need to care for themselves over a lifetime?
That’s the focus of a new, national study led by Marcella Niehoff School of Nursing Associate Professor Monique Ridosh. Her study, “Family Assessment and Momentary Evaluation,” or FAME, examines how children with spina bifida learn to manage their condition as they grow up—and the role their families play in helping them. Spina bifida is a chronic congenital condition of the spinal column and nervous system that requires lifelong care.
“What I’m trying to do is understand how these kids learn from their parents,” said Ridosh, recipient of a $3.2 million, five-year National Institutes of Health grant for the study. “How do kids learn self-management behaviors? How do their parents help them take on more responsibility for their care?”
Ridosh’s study is unique because it documents health-related interactions between parents and their children in real time. The goal, she said, is to improve family functioning and patients’ quality of life, both in the near- and long-term.
“We want to develop interventions for families that are dealing with chronic conditions,” Ridosh said.
A complex prognosis
Ridosh launched the study to address a gap in scientific literature about how the family environment impacts self-management, or the ability to care for one’s medical needs, in children with spina bifida. The study is part of her broader research related to strengthening families with children who have chronic conditions.
Approximately 166,000 people in the United States have spina bifida, according to the Spina Bifida Association. While the severity of the condition varies by patient, many experience symptoms including limited mobility, incontinence, and hydrocephalus, or the buildup of fluid in the brain.
Managing those conditions involves a complex daily regimen, with multi-step tasks—like using a urinary catheter or monitoring for pressure sores—that are too difficult for the youngest spina bifida patients.
“How do kids learn self-management behaviors? How do their parents help them take on more responsibility for their care?”
— Monique Ridosh, Marcella Niehoff School of Nursing Associate Professor
Family support leads to better health
But even young children can take part in their care, Ridosh said. As they get older and gradually become more self-reliant, their parents play a key role in helping them learn the self-management skills they need to transition to adulthood and full independence.
Those skills often include managing bowel and bladder function through a combination of diet, medication, and catheterization.
Meanwhile, about 50 percent of spina bifida patients are wheelchair users, and many use braces or ankle-foot orthotics. Patients face a high risk of skin pressure injuries and skin breakdown, “so taking care of their skin, making sure they’re moving and shifting their weight—these are important steps,” Ridosh said.
Spina bifida patients can expect to live well into adulthood, thanks to recent advances in medical care. Infections related to routine care—including urinary sepsis, skin ulcers, and pneumonia—remain the leading cause of death.
“All of these are largely preventable or can be lessened through self-management,” Ridosh said, noting that family cohesion in childhood is linked to more independence and better health outcomes in adulthood. “This really underscores the importance of supporting families as they learn these skills.”
Unique methodology
Ridosh’s study uses multiple methods to collect data from patients and families, including surveys, interviews, and observations of family interactions. Her research is groundbreaking, however, because it incorporates Ecological Momentary Assessment (EMA), a tool to capture feedback from participants several times a day.
Children—all between ages 8 and 15—and their parents will receive multiple prompts a day through an app, asking them about how they manage bladder, bowel, and skin care, as well as stress.
The app also evaluates family involvement, asking parents and kids to rate the quality of their interactions.
“How much did you feel like you and your parent worked together to solve problems with your bladder care or problems peeing?” reads a question for children.
Ridosh said EMA gives researchers a nuanced, evolving picture of how children and their parents communicate—helping investigators understand the process young spina bifida patients go through as they learn self-management.
The study intentionally includes Hispanic families, who have the highest incidence of spina bifida yet remain understudied, according to Ridosh.
“We know families operate in different ways that are informed by their culture,” she said. “By including Hispanic families, we’re seeking to understand those differences so we can develop interventions tailored to multiple populations.”
Research with impact
Professor Todd Ruppar, associate dean for research and scholarly innovation, said Ridosh’s multi-site study is ambitious because of its breadth—incorporating 180 families from across the country—and its use of EMA, which can be challenging to implement due to its complexity and the sheer number of responses needed from participants.
Ridosh’s findings, he said, will offer a fresh, crucial perspective for researchers that could extend beyond spina bifida, informing self-management for other conditions.
“With EMA, Dr. Ridosh is capturing how symptoms and self-management behaviors change in real-time, on a day-to-day basis or even within the same day,” he said. “This is going to be invaluable in helping develop interventions and figure out ways to support patients and help them manage their conditions.”
Read more stories from the Marcella Niehoff School of Nursing.
