Approximately 1 in 20 U.S. children younger than 18 years of age are medically complex, meaning they have multiorgan system conditions like cerebral palsy and depend on implanted tube-related medical technology. These children receive most of their care at home, with parents responsible for handling complicated devices and managing intricate medication and nutrition regimens. In doing so, parents commonly encounter safety challenges, and they tend to come up with creative solutions without the care team involvement, according to a study from Ann & Robert H. Lurie Children’s Hospital of Chicago published in the journal Pediatrics.
“Our findings highlight parental ingenuity and resourcefulness in developing strategies to tackle safety challenges that often arise during their child’s at-home care, such as medical supply issues or malfunctioning devices,” said lead author Peter Walsh, Behavioral Research Coordinator in the Foster Health Lab at Stanley Manne Children’s Research Institute at Lurie Children’s.
“While that is commendable and we acknowledge that parents are experts in what their own child needs,” he added, “stronger partnership and communication between the care team and parents would raise awareness of common safety concerns and help generate solutions, which in turn could be shared with other parents during training. Ideally, these conversations would begin when the medical devices are prescribed so that safety events could be prevented. Ongoing dialogue would also help decrease parental isolation and generally maintain a safer environment for children with medical complexity.”
The study included a national sample of 21 parents of children with medical complexity who spoke English or Spanish. Over one week, participants responded to twice-daily surveys soliciting text messages about their child’s tube-related care. In addition to text messages, parents were encouraged to share photos or audio recordings. Parents were later interviewed to discuss their messages in greater detail.
Researchers found that parents navigate patient safety challenges during daily tube-related care and create strategies to mitigate safety risks. Parents often did not share these challenges and strategies with their child’s care team.
Top safety challenges included:
While parents’ safety-promoting strategies varied, overall study participants created systematic operations to prevent adverse events within routine care.
“Our research suggests that proactive measures are necessary, such as offering parents tips about handling frequently encountered safety issues so they don’t have to reinvent the wheel each time,” said senior author Carolyn Foster, MD, MS , Director of Health@Home Initiative at Manne Research Institute and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “Care plans also need to be simplified when possible and tailored to each family’s unique needs. Most importantly, constructing support systems where parents know who to call if they face challenges is essential for advancing at-home care safety.”
This study was supported by grant 1R18HS029638-01 from the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services (HHS).
Dr. Foster is the Yaeger Family Research Scholar at Lurie Children’s.
Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report .
PEDIATRICS