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ERIC Number: EJ1458554
Record Type: Journal
Publication Date: 2025-Feb
Pages: 13
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1056-263X
EISSN: EISSN-1573-3580
Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear
Sarah A. Sobotka
Journal of Developmental and Physical Disabilities, v37 n1 p185-197 2025
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.
Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://bibliotheek.ehb.be:2123/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (DHHS/NIH); Health Resources and Services Administration (HRSA) (DHHS), Maternal and Child Health Bureau (MCHB)
Authoring Institution: N/A
Grant or Contract Numbers: K23HD097276; T73MC11047