Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

• Published in: Pediatric neurology Vol. 161; pp. 76 - 83
• Main Authors: Field, Natalie K., Franck, Linda S., Shellhaas, Renée A., Glass, Hannah C., Young, Kathleen A., Dhar, Saisha, Hamlett, Ashley, Pilon, Betsy, Means, Katie, Soul, Janet S., Massey, Shavonne L., Wusthoff, Courtney J., Chu, Catherine J., Thomas, Cameron, Rogers, Elizabeth, Berl, Madison M., Benedetti, Giulia M., Anwar, Tayyba, Lemmon, Monica E.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.12.2024
• Subjects: Adult; Burden of care; Caregivers - psychology; Child; Child, Preschool; Children with medical complexity; Epilepsy; Female; Humans; Infant; Infant, Newborn; Longitudinal Studies; Male; Neurology; Parents - psychology; Pediatrics; Prospective Studies; Qualitative research; Registries; Seizures; Qualitative research; Pediatrics; Neurology; Burden of care; Epilepsy; Children with medical complexity
• ISSN: 0887-8994; 1873-5150; 1873-5150
• DOI: 10.1016/j.pediatrneurol.2024.08.007

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. 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. 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. 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.