Evidence map›Paper›PMID 34509000›Full record

Observational studyPediatric neurology2021

Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents.

Monica E Lemmon, Hannah C Glass, Renée A Shellhaas, Mary Carol Barks, Simran Bansal, Dana Annis, Jennifer L Guerriero, Betsy Pilon, Courtney J Wusthoff, Taeun Chang and 9 more

Open access · bronzeAbstract readMulticenter StudyObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Pediatric neurology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed, 1 pooled it
4.7field-weighted citation impact, top 5% of its field
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

15 citing papers in PubMed, 1 synthesis or guideline pooled it, 20 citations in OpenAlex.

  1. Pooled it
  2. Review
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Observational
  9. Review
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  12. Article
  13. Review
  14. Article
  15. Observational
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

19 authors at 11 institutions in 1 country.

Monica E LemmonDivision of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina; Margolis Center for Health Policy, Duke University, Durham, North Carolina. Electronic address: monica.lemmon@duke.edu.
Hannah C GlassDepartments of Neurology and 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.
Renée A ShellhaasDepartment of Pediatrics, University of Michigan, Ann Arbor, Michigan.
Mary Carol BarksMargolis Center for Health Policy, Duke University, Durham, North Carolina.
Simran BansalDivision of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina.
Dana AnnisNSR Parent Partner, Children's National Hospital, Washington, District of Columbia.
Jennifer L GuerrieroNSR Parent Partner, Children's Hospital Boston, Boston, Massachusetts; Dana Farber Cancer Institute, Boston, Massachusetts.
Betsy PilonNSR Parent Partner, Hope for HIE, West Bloomfield, Michigan.
Courtney J WusthoffDepartments of Neurology and Pediatrics, Stanford University, Stanford, California.
Taeun ChangDepartment of Neurology, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia.
Janet S SoulDepartment of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
Catherine J ChuDepartment of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts.
Cameron ThomasDepartment of Pediatrics, University of Cincinnati, College of Medicine, Cincinnati, Ohio; Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Shavonne L MasseyDepartments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
Nicholas S AbendDepartments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; Department of Anesthesia and Critical Care Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
Stephanie RauDepartment of Pediatrics, University of Michigan, Ann Arbor, Michigan.
Elizabeth E RogersDepartments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
Linda S FranckDepartment of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.
Neonatal Seizure Registry
Duke University · USUniversity of California, San Francisco · USBoston Children's Hospital · USChildren's Hospital of Philadelphia · USUniversity of Michigan · USChildren's National · USCincinnati Children's Hospital Medical Center · USGeorge Washington University · USHarvard University · USHope Foundation · USStanford University · US

Funding

Decision Making for Infants with Neurologic ConditionsK23NS116453 · NINDS · DUKE UNIVERSITY · PI LEMMON, MONICA · 2020 to 2024
$942k
NINDS NIH HHS K23 NS116453
6 · The paper itself

Abstract

backgroundParents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures.

methodsThis prospective, observational, and multicenter (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. Parents completed surveys about family well-being at 12, 18, and 24 months corrected gestational age. Parents were asked open-ended questions eliciting their advice to clinicians caring for neonates with seizures. Responses were analyzed using a conventional content analysis approach.

resultsAmong the 310 parents who completed surveys, 118 (38%) shared advice for clinicians. These parents were predominantly mothers (n = 103, 87%). Three overarching themes were identified. (1) Communicate information effectively: parents appreciate when clinicians offer transparent and balanced information in an accessible way. (2) Understand and validate parent experience: parents value clinicians who display empathy, compassion, and a commitment to parent-partnered clinical care. (3) Providesupportand resources: parents benefit from emotional support, education, connection with peers, and help navigating the health care system.

conclusionsParents caring for neonates with seizures appreciate a family-centered approach in health care encounters, including skilled communication, understanding and validation of the parent experience, and provision of support and resources. Future interventions should focus on building structures to reinforce these priorities.

Indexed as

Health CommunicationProfessional-Family RelationsAdultCaregiversChild, PreschoolFemaleHealth Care SurveysHumansInfantInfant, NewbornInfant, Newborn, DiseasesMaleParentsProspective StudiesQualitative ResearchSeizuresCommunicationMental HealthNeonateNeurology

Identifiers

PMID34509000
PMCPMC8523194
OpenAlexW3189069723

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.