Parent experience of caring for neonates with seizures.
Publication/Presentation Date
11-1-2020
Abstract
OBJECTIVE: Neonates with seizures have a high risk of mortality and neurological morbidity. We aimed to describe the experience of parents caring for neonates with seizures.
DESIGN: This prospective, observational and multicentre (
RESULTS: 144 parents completed the open-ended questions (732 total comments). Four themes were identified.
CONCLUSIONS: Parents of neonates with seizures face challenges as they adapt to and find meaning in their role as a parent of a child with medical needs. Future interventions should target facilitating parent involvement in clinical and developmental care, improving team consensus and reducing the burden associated with prognostic uncertainty.
Volume
105
Issue
6
First Page
634
Last Page
639
ISSN
1468-2052
Published In/Presented At
Lemmon, M., Glass, H., Shellhaas, R. A., Barks, M. C., Bailey, B., Grant, K., Grossbauer, L., Pawlowski, K., Wusthoff, C. J., Chang, T., Soul, J., Chu, C. J., Thomas, C., Massey, S. L., Abend, N. S., Rogers, E. E., Franck, L. S., & Neonatal Seizure Registry (2020). Parent experience of caring for neonates with seizures. Archives of disease in childhood. Fetal and neonatal edition, 105(6), 634–639. https://doi.org/10.1136/archdischild-2019-318612
Disciplines
Medicine and Health Sciences | Pediatrics
PubMedID
32503792
Department(s)
Department of Pediatrics
Document Type
Article