Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.
Am J Perinatol
; 39(12): 1341-1347, 2022 09.
Article
en En
| MEDLINE
| ID: mdl-33454943
ABSTRACT
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. STUDYDESIGN:
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..
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Contexto en salud:
11_ODS3_cobertura_universal
Problema de salud:
11_delivery_arrangements
Asunto principal:
Unidades de Cuidado Intensivo Neonatal
/
Hidrocefalia
Tipo de estudio:
Qualitative_research
Límite:
Child
/
Humans
/
Infant
/
Newborn
Idioma:
En
Revista:
Am J Perinatol
Año:
2022
Tipo del documento:
Article