Parents invent home safety fixes for medically complex children
· News-MedicalApproximately 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.
Peter Walsh, lead author, Behavioral Research Coordinator in the Foster Health Lab, Stanley Manne Children's Research Institute, Lurie Children'sOur 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."
"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:
- Supply issues (24%) – includes difficulties obtaining tube- and medication-related supplies, medications, or equipment
- Devices not working as intended (22%) – for example, feeding pumps ran inconsistently and incorrectly, or medication syringes broke
- Irregularities in care experienced as normal (20%) – for example, one parent described how their child's feeding tube would constantly wrap around them overnight
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.
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