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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's 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."

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