Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

Natalie K Field¹, Linda S Franck², Renée A Shellhaas³, Hannah C Glass⁴, Kathleen A Young¹, Saisha Dhar⁵, Ashley Hamlett⁶, Betsy Pilon⁷, Katie Means⁸, Janet S Soul⁹, Shavonne L Massey¹⁰, Courtney J Wusthoff¹¹, Catherine J Chu¹², Cameron Thomas¹³, Elizabeth Rogers¹⁴, Madison M Berl¹⁵, Giulia M Benedetti¹⁶, Tayyba Anwar¹⁷, Monica E Lemmon¹⁸; Neonatal Seizure Registry

Affiliations

¹ Duke University School of Medicine, Durham, North Carolina.
² Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.
³ Division of Pediatric Neurology, Department of Neurology, Washington University in St. Louis, St. Louis, Missouri.
⁴ 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.
⁵ Trinity College, Duke University, Durham, North Carolina.
⁶ NSR Parent Partner, Duke University Medical Center, Durham, North Carolina.
⁷ NSR Parent Partner, Executive Director - Hope for HIE, West Bloomfield, Michigan.
⁸ NSR Parent Partner, Cincinnati Children's Hospital Medical Center, Fort Thomas, Kentucky.
⁹ Department of Neurology, Boston Children's Hospital, Boston, Massachusetts.
¹⁰ Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
¹¹ Departments of Neurology and Pediatrics, Stanford University, Palo Alto, California.
¹² Department of Neurology, Massachusetts General Hospital, Boston, Massachusetts.
¹³ Department of Pediatrics, University of Cincinnati and Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
¹⁴ Department of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
¹⁵ Departments of Psychiatry and Behavioral Sciences, Children's Research Institute, Children's National Hospital, George Washington University, Washington, District of Columbia.
¹⁶ Division of Pediatric Neurology, Department of Pediatrics, C.S. Mott Children's Hospital and the University of Michigan, Ann Arbor, Michigan.
¹⁷ Departments of Neurology and Pediatrics, Children's National Hospital and The George Washington University School of Medicine, Washington, District of Columbia.
¹⁸ 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.

PMID: 39317023
PMCID: PMC11602358 (available on 2025-12-01)
DOI: 10.1016/j.pediatrneurol.2024.08.007

Observational Study

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

Natalie K Field et al. Pediatr Neurol. 2024 Dec.

. 2024 Dec:161:76-83.

doi: 10.1016/j.pediatrneurol.2024.08.007. Epub 2024 Sep 7.

Authors

Affiliations

¹ Duke University School of Medicine, Durham, North Carolina.
² Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.
³ Division of Pediatric Neurology, Department of Neurology, Washington University in St. Louis, St. Louis, Missouri.
⁴ 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.
⁵ Trinity College, Duke University, Durham, North Carolina.
⁶ NSR Parent Partner, Duke University Medical Center, Durham, North Carolina.
⁷ NSR Parent Partner, Executive Director - Hope for HIE, West Bloomfield, Michigan.
⁸ NSR Parent Partner, Cincinnati Children's Hospital Medical Center, Fort Thomas, Kentucky.
⁹ Department of Neurology, Boston Children's Hospital, Boston, Massachusetts.
¹⁰ Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
¹¹ Departments of Neurology and Pediatrics, Stanford University, Palo Alto, California.
¹² Department of Neurology, Massachusetts General Hospital, Boston, Massachusetts.
¹³ Department of Pediatrics, University of Cincinnati and Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
¹⁴ Department of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
¹⁵ Departments of Psychiatry and Behavioral Sciences, Children's Research Institute, Children's National Hospital, George Washington University, Washington, District of Columbia.
¹⁶ Division of Pediatric Neurology, Department of Pediatrics, C.S. Mott Children's Hospital and the University of Michigan, Ann Arbor, Michigan.
¹⁷ Departments of Neurology and Pediatrics, Children's National Hospital and The George Washington University School of Medicine, Washington, District of Columbia.
¹⁸ 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.

PMID: 39317023
PMCID: PMC11602358 (available on 2025-12-01)
DOI: 10.1016/j.pediatrneurol.2024.08.007

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.

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

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Conflict of interest statement

Declaration of Competing Interest Dr. Monica Lemmon receives funding from NIH (K23NS116453). Dr. Reneé Shellhaas receives royalties from UpToDate for authorship on topics related to neonatal seizures and serves as a consultant for the Epilepsy Study Consortium. Betsy Pilon is the Executive Director of Hope for HIE. The other authors have no disclosures to report.

References

1. Annegers JF, Hauser WA, Lee JR, Rocca WA. Incidence of acute symptomatic seizures in Rochester, Minnesota, 1935–1984. Epilepsia. 1995;36(4):327–333. doi:10.1111/j.1528-1157.1995.tb01005.x - DOI - PubMed
1. Lanska MJ, Lanska DJ, Baumann RJ, Kryscio RJ. A population-based study of neonatal seizures in Fayette County, Kentucky. Neurology. 1995;45(4):724–732. doi:10.1212/WNL.45.4.724 - DOI - PubMed
1. Baudou E, Cances C, Dimeglio C, Hachon Lecamus C. Etiology of neonatal seizures and maintenance therapy use: a 10-year retrospective study at Toulouse Children’s hospital. BMC Pediatr. 2019;19(1):136. doi:10.1186/s12887-019-1508-5 - DOI - PMC - PubMed
1. Glass HC, Shellhaas RA, Wusthoff CJ, et al. Contemporary Profile of Seizures in Neonates: A Prospective Cohort Study. J Pediatr. 2016;174:98–103.e1. doi:10.1016/j.jpeds.2016.03.035 - DOI - PMC - PubMed
1. Glass HC, Grinspan ZM, Shellhaas RA. Outcomes after acute symptomatic seizures in neonates. Semin Fetal Neonatal Med. 2018;23(3):218–222. doi:10.1016/j.siny.2018.02.001 - DOI - PubMed

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Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

Affiliations

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical