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

Publication ,  Journal Article
Dorner, RA; Boss, RD; Burton, VJ; Raja, K; Robinson, S; Lemmon, ME
Published in: Am J Perinatol
September 2022

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..

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Published In

Am J Perinatol

DOI

EISSN

1098-8785

Publication Date

September 2022

Volume

39

Issue

12

Start / End Page

1341 / 1347

Location

United States

Related Subject Headings

  • Qualitative Research
  • Patient Discharge
  • Parents
  • Obstetrics & Reproductive Medicine
  • Intensive Care Units, Neonatal
  • Infant, Newborn
  • Infant
  • Hydrocephalus
  • Humans
  • Child
 

Citation

APA
Chicago
ICMJE
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Dorner, R. A., Boss, R. D., Burton, V. J., Raja, K., Robinson, S., & Lemmon, M. E. (2022). Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus. Am J Perinatol, 39(12), 1341–1347. https://doi.org/10.1055/s-0040-1722344
Dorner, Rebecca A., Renee D. Boss, Vera J. Burton, Katherine Raja, Shenandoah Robinson, and Monica E. Lemmon. “Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.Am J Perinatol 39, no. 12 (September 2022): 1341–47. https://doi.org/10.1055/s-0040-1722344.
Dorner RA, Boss RD, Burton VJ, Raja K, Robinson S, Lemmon ME. Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus. Am J Perinatol. 2022 Sep;39(12):1341–7.
Dorner, Rebecca A., et al. “Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.Am J Perinatol, vol. 39, no. 12, Sept. 2022, pp. 1341–47. Pubmed, doi:10.1055/s-0040-1722344.
Dorner RA, Boss RD, Burton VJ, Raja K, Robinson S, Lemmon ME. Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus. Am J Perinatol. 2022 Sep;39(12):1341–1347.
Journal cover image

Published In

Am J Perinatol

DOI

EISSN

1098-8785

Publication Date

September 2022

Volume

39

Issue

12

Start / End Page

1341 / 1347

Location

United States

Related Subject Headings

  • Qualitative Research
  • Patient Discharge
  • Parents
  • Obstetrics & Reproductive Medicine
  • Intensive Care Units, Neonatal
  • Infant, Newborn
  • Infant
  • Hydrocephalus
  • Humans
  • Child