{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T13:08:36Z","timestamp":1790600916583,"version":"4.1.0"},"reference-count":26,"publisher":"Georg Thieme Verlag KG","issue":"12","funder":[{"name":"NIH T32 Training Grant","award":["T32HL125239\u201303"],"award-info":[{"award-number":["T32HL125239\u201303"]}]},{"name":"National Institute of Neurological Disorders and Stroke of the National Institutes of Health","award":["K23NS116453"],"award-info":[{"award-number":["K23NS116453"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Am J Perinatol"],"published-print":{"date-parts":[[2022,9]]},"abstract":"<jats:p>\n            Objective\u2003This 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.<\/jats:p><jats:p>\n            Study Design\u2003This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach.<\/jats:p><jats:p>\n            Results\u2003Thematic 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.<\/jats:p><jats:p>\n            Conclusion\u2003Parents 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.<\/jats:p><jats:p>\n            Key Points\n          <\/jats:p>","DOI":"10.1055\/s-0040-1722344","type":"journal-article","created":{"date-parts":[[2021,1,17]],"date-time":"2021-01-17T23:31:35Z","timestamp":1610926295000},"page":"1341-1347","source":"Crossref","is-referenced-by-count":6,"title":["Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus"],"prefix":"10.1055","volume":"39","author":[{"given":"Rebecca A.","family":"Dorner","sequence":"additional","affiliation":[{"name":"Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Eastern Virginia Medical School, Norfolk, Virginia"},{"name":"Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Children's Hospital of The King's Daughters, Norfolk, Virginia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Renee D.","family":"Boss","sequence":"additional","affiliation":[{"name":"Division of Perinatal-Neonatal Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland"},{"name":"Johns Hopkins University, Phoebe R. Berman Institute of Bioethics, Baltimore, Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vera J.","family":"Burton","sequence":"additional","affiliation":[{"name":"Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, Maryland"},{"name":"Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Raja","sequence":"additional","affiliation":[{"name":"University of Maryland School of Medicine, Baltimore, Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shenandoah","family":"Robinson","sequence":"additional","affiliation":[{"name":"Department of Pediatric Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica E.","family":"Lemmon","sequence":"additional","affiliation":[{"name":"Division of Pediatric 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