Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

Natalie K. Field, Duke University School of Medicine, Durham, North Carolina.
Linda S. Franck, Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.
Renée A. Shellhaas, Division of Pediatric Neurology, Department of Neurology, Washington University in St. Louis, St. Louis, Missouri.
Hannah C. Glass, Department of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California; Department of Epidemiology & Biostatistics, University of California, San Francisco, San Francisco, California.
Kathleen A. Young, Duke University School of Medicine, Durham, North Carolina.
Saisha Dhar, Trinity College, Duke University, Durham, North Carolina.
Ashley Hamlett, NSR Parent Partner, Duke University Medical Center, Durham, North Carolina.
Betsy Pilon, NSR Parent Partner, Executive Director - Hope for HIE, West Bloomfield, Michigan.
Katie Means, NSR Parent Partner, Cincinnati Children's Hospital Medical Center, Fort Thomas, Kentucky.
Janet S. Soul, Department of Neurology, Boston Children's Hospital, Boston, Massachusetts.
Shavonne L. Massey, Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
Courtney J. Wusthoff, Departments of Neurology and Pediatrics, Stanford University, Palo Alto, California.
Catherine J. Chu, Department of Neurology, Massachusetts General Hospital, Boston, Massachusetts.
Cameron Thomas, Department of Pediatrics, University of Cincinnati and Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Elizabeth Rogers, Department of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
Madison M. Berl, Departments of Psychiatry and Behavioral Sciences, Children's Research Institute, Children's National Hospital, George Washington University, Washington, District of Columbia.
Giulia M. Benedetti, Division of Pediatric Neurology, Department of Pediatrics, C.S. Mott Children's Hospital and the University of Michigan, Ann Arbor, Michigan.
Tayyba Anwar, Departments of Neurology and Pediatrics, Children's National Hospital and The George Washington University School of Medicine, Washington, District of Columbia.
Monica E. Lemmon, Departments of Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, NC, USA, Duke-Margolis Center for Health Policy, Washington, District of Columbia. Electronic address: monica.lemmon@duke.edu.

Document Type

Journal Article

Publication Date

9-7-2024

Journal

Pediatric neurology

Volume

161

DOI

10.1016/j.pediatrneurol.2024.08.007

Keywords

Burden of care; Children with medical complexity; Epilepsy; Neurology; Pediatrics; Qualitative research

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.

Department

Neurology

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