Home nursing care is often warranted—but, too often, not reliably available1—for children with medical complexity (CMCs) who live with serious and sometimes life-threatening conditions and who usually depend on medical technology for their well-being and safety. When these children reside at home, parents or guardians are expected to provide medical care during many, or even all, hours of the day and night. Parental duties might include administering medication, providing enteral tube feedings or parenteral nutrition, performing chest physiotherapy, and perpetually monitoring the child for signs of critical decompensation, among other tasks. Many of these caregiving activities involve sustained attention and physical labor and must be performed multiple times each day.
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Schall TE, Foster CC, Feudtner C. Safe Work-Hour Standards for Parents of Children With Medical Complexity. JAMA Pediatr. 2020;174(1):7–8. doi:10.1001/jamapediatrics.2019.4003
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