Evidence map›Paper›PMID 39317023›Full record

Observational studyPediatric neurology2024

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience.

Natalie K Field, Linda S Franck, Renée A Shellhaas, Hannah C Glass, Kathleen A Young, Saisha Dhar, Ashley Hamlett, Betsy Pilon, Katie Means, Janet S Soul and 10 more

Abstract readObservational StudyMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Pediatric neurology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

20 authors.

Natalie K FieldDuke University School of Medicine, Durham, North Carolina.
Linda S FranckDepartment of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.
Renée A ShellhaasDivision of Pediatric Neurology, Department of Neurology, Washington University in St. Louis, St. Louis, Missouri.
Hannah C GlassDepartment 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 YoungDuke University School of Medicine, Durham, North Carolina.
Saisha DharTrinity College, Duke University, Durham, North Carolina.
Ashley HamlettNSR Parent Partner, Duke University Medical Center, Durham, North Carolina.
Betsy PilonNSR Parent Partner, Executive Director - Hope for HIE, West Bloomfield, Michigan.
Katie MeansNSR Parent Partner, Cincinnati Children's Hospital Medical Center, Fort Thomas, Kentucky.
Janet S SoulDepartment of Neurology, Boston Children's Hospital, Boston, Massachusetts.
Shavonne L MasseyDepartments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
Courtney J WusthoffDepartments of Neurology and Pediatrics, Stanford University, Palo Alto, California.
Catherine J ChuDepartment of Neurology, Massachusetts General Hospital, Boston, Massachusetts.
Cameron ThomasDepartment of Pediatrics, University of Cincinnati and Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Elizabeth RogersDepartment of Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
Madison M BerlDepartments of Psychiatry and Behavioral Sciences, Children's Research Institute, Children's National Hospital, George Washington University, Washington, District of Columbia.
Giulia M BenedettiDivision of Pediatric Neurology, Department of Pediatrics, C.S. Mott Children's Hospital and the University of Michigan, Ann Arbor, Michigan.
Tayyba AnwarDepartments of Neurology and Pediatrics, Children's National Hospital and The George Washington University School of Medicine, Washington, District of Columbia.
Monica E LemmonDepartments 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.
Neonatal Seizure Registry

Funding

Neonatal Seizure Registry Developmental Functional EValuation (NSR-DEV)R01NS111166 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI GLASS, HANNAH CRANLEY, SHELLHAAS, RENEE A. · 2020 to 2023
$4.6M
Decision Making for Infants with Neurologic ConditionsK23NS116453 · NINDS · DUKE UNIVERSITY · PI LEMMON, MONICA · 2020 to 2024
$942k
NINDS NIH HHS K23 NS116453NINDS NIH HHS R01 NS111166
6 · The paper itself

Abstract

backgroundParents 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.

methodsThis 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.

resultsA 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.

conclusionsParents 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.

Indexed as

ParentsSeizuresAdultCaregiversChildChild, PreschoolFemaleHumansInfantInfant, NewbornLongitudinal StudiesMaleProspective StudiesRegistriesBurden of careChildren with medical complexityEpilepsyNeurologyPediatricsQualitative research

Identifiers

PMID39317023
PMCPMC11602358

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.