Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience.
Publication/Presentation Date
12-1-2024
Abstract
BACKGROUND: Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.
METHODS: This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used.
RESULTS: A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (n = 142), 12 months (n = 169), 18 months (n = 208), and 24 months (n = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow.
CONCLUSIONS: Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers' psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.
Volume
161
First Page
76
Last Page
83
ISSN
1873-5150
Published In/Presented At
Field, N. K., Franck, L. S., Shellhaas, R. A., Glass, H. C., Young, K. A., Dhar, S., Hamlett, A., Pilon, B., Means, K., Soul, J. S., Massey, S. L., Wusthoff, C. J., Chu, C. J., Thomas, C., Rogers, E., Berl, M. M., Benedetti, G. M., Anwar, T., Lemmon, M. E., & Neonatal Seizure Registry (2024). Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience. Pediatric neurology, 161, 76–83. https://doi.org/10.1016/j.pediatrneurol.2024.08.007
Disciplines
Medicine and Health Sciences | Pediatrics
PubMedID
39317023
Department(s)
Department of Pediatrics
Document Type
Article