Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear
Saved in:
| Title: | Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear |
|---|---|
| Language: | English |
| Authors: | Sarah A. Sobotka (ORCID |
| Source: | Journal of Developmental and Physical Disabilities. 2025 37(1):185-197. |
| Availability: | 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://link.springer.com/ |
| Peer Reviewed: | Y |
| Page Count: | 13 |
| Publication Date: | 2025 |
| Sponsoring Agency: | 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) |
| Contract Number: | K23HD097276 T73MC11047 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Child Health, Special Health Problems, Family Environment, Parent Role, Mothers, Safety, Labor Supply, Labor Needs, Caregiver Role, Nurses, Health Services, Access to Health Care, Home Programs, Mother Attitudes, Parents as Teachers, Students with Disabilities |
| DOI: | 10.1007/s10882-023-09936-2 |
| ISSN: | 1056-263X 1573-3580 |
| 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. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1458554 |
| Database: | ERIC |
|
Full text is not displayed to guests.
Login for full access.
|
|
| 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. |
|---|---|
| ISSN: | 1056-263X 1573-3580 |
| DOI: | 10.1007/s10882-023-09936-2 |
