Am J Perinatol 2022; 39(12): 1341-1347
DOI: 10.1055/s-0040-1722344
Original Article

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus

Rebecca A. Dorner
1   Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Eastern Virginia Medical School, Norfolk, Virginia
2   Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Children's Hospital of The King's Daughters, Norfolk, Virginia
Renee D. Boss
3   Division of Perinatal-Neonatal Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland
4   Johns Hopkins University, Phoebe R. Berman Institute of Bioethics, Baltimore, Maryland
Vera J. Burton
5   Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, Maryland
6   Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland
Katherine Raja
7   University of Maryland School of Medicine, Baltimore, Maryland
Shenandoah Robinson
8   Department of Pediatric Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland
Monica E. Lemmon
9   Division of Pediatric Neurology, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
10   Duke-Margolis Center for Health Policy, Durham, North Carolina
› Author Affiliations
Funding This work was supported by the NIH T32 Training Grant (T32HL125239–03) awarded to R.A.D. M.E.L. reports grants from the National Institute of Neurological Disorders and Stroke of the National Institutes of Health (K23NS116453). The authors have indicated they have no financial relationships or potential conflicts of interest relevant to this article to disclose.


Objective This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond.

Study Design This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach.

Results Thematic saturation was reached on parent communication preferences after 10 interviews. Parent experiences of infant hydrocephalus broadly fell into two time periods, the neonatal intensive care unit (NICU) and after NICU discharge. The themes of uncertainty, isolation, hypervigilance, and the need for advocacy were common to each phase.

Conclusion Parents expressed interest in the development of tiered NICU counseling tools that would provide evidence-based and family-centric information to (1) initiate connections with community and peer resources and (2) combat the isolation and hypervigilance that characterized their family experience of living with hydrocephalus.

Key Points

  • Infants with posthemorrhagic hydrocephalus are at risk for adverse neurodevelopmental outcomes.

  • The parent experience of caring for a child with posthemorrhagic hydrocephalus is not well-described. In this interview study, parents described uncertainty, isolation, and hypervigilance.

  • These findings call for structured NICU counseling and longitudinal family supports after discharge.

Publication History

Received: 13 October 2020

Accepted: 01 December 2020

Article published online:
17 January 2021

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