TY - JOUR
T1 - Isolated and on Guard
T2 - Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus
AU - Dorner, Rebecca A.
AU - Boss, Renee D.
AU - Burton, Vera J.
AU - Raja, Katherine
AU - Robinson, Shenandoah
AU - Lemmon, Monica E.
N1 - Publisher Copyright:
© 2022 Thieme Medical Publishers, Inc.. All rights reserved.
PY - 2022/8/31
Y1 - 2022/8/31
N2 - 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.
AB - 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.
KW - hydrocephalus
KW - neonatal intensive care unit
KW - parents
KW - qualitative research
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U2 - 10.1055/s-0040-1722344
DO - 10.1055/s-0040-1722344
M3 - Article
C2 - 33454943
AN - SCOPUS:85099867049
SN - 0735-1631
VL - 39
SP - 1341
EP - 1347
JO - American journal of perinatology
JF - American journal of perinatology
IS - 12
ER -