J Dev Phys Disabil. 2025 Feb;37(1):185-197. doi: 10.1007/s10882-023-09936-2. Epub 2023 Nov 7.
ABSTRACT
Children with invasive mechanical ventilation (IMV)(ventilation delivered through an endotracheal tube), often require 24/7 monitoring and care by skilled caregivers in order to stay safely within the home environment. Practice standards recommend skilled in-home nursing to maintain safe monitoring practices. However, across the country, a lack of home health nurses trained to care for children with IMV threatens the safety of this high-risk population. Despite this shortage, the vast majority of children with IMV do live at home. With great personal sacrifice, health system deficiencies are filled by parents, primarily mothers, in their roles as parent, primary nurse, care coordinator, therapist, educator, and advocate, and thus avoid readmissions and health system crises. Their contribution to fill health system gaps, by necessity, is often in contradiction to safe work hour recommendations for healthcare workers. These magic mothers and fathers make potential crises “disappear” out of sheer grit and determination to keep their children home. The long-term impacts of health service gaps on family systems must be considered and innovative solutions enacted to support these vulnerable children and families.
PMID:40476224 | PMC:PMC12140620 | DOI:10.1007/s10882-023-09936-2
