Rare Diseases Symptoms Automatic Extraction

Parents' perspectives on safety in neonatal intensive care: a mixed-methods study.

[congenital diaphragmatic hernia]

Little is known about how parents think about neonatal intensive care unit (NICU) safety. Due to their physiologic immaturity and small size, infants in NICUs are especially vulnerable to injury from their medical care. Campaigns are underway to integrate patients and family members into patient safety. This study aimed to describe how parents of infants in the NICU conceptualise patient safety and what kinds of concerns they have about safety.This mixed-methods study employed questionnaires, interviews and observation with parents of infant patients in an academic medical centre NICU. Measures included parent stress, family-centredness and types of safety concerns.46 parents completed questionnaires and 14 of these parents also participated in 10 interviews (including 4 couple interviews). Infants had a range of medical and surgical problems, including prematurity, congenital diaphragmatic hernia and congenital cardiac disease. Parents were positive about their infants' care and had low levels of concern about the safety of procedures. Parents reporting more stress had more concerns. We identified three overlapping domains in parents' conceptualisations of safety in the NICU, including physical, developmental and emotional safety. Parents demonstrated sophisticated understanding of how environmental, treatment and personnel factors could potentially influence their infants' developmental and emotional health.Parents have safety concerns that cannot be addressed solely by reducing errors in the NICU. Parent engagement strategies that respect parents as partners in safety and address how clinical treatment articulates with physical, developmental and emotional safety domains may result in safety improvements.

Diseases presenting "low levels" symptom

  • 22q11.2 deletion syndrome
  • adrenal incidentaloma
  • adrenomyeloneuropathy
  • aromatase deficiency
  • benign recurrent intrahepatic cholestasis
  • cadasil
  • congenital adrenal hyperplasia
  • congenital diaphragmatic hernia
  • esophageal carcinoma
  • hodgkin lymphoma, classical
  • liposarcoma
  • malignant atrophic papulosis
  • megacystis-microcolon-intestinal hypoperistalsis syndrome
  • neonatal adrenoleukodystrophy
  • omenn syndrome
  • oral submucous fibrosis
  • papillon-lefèvre syndrome
  • primary effusion lymphoma
  • sneddon syndrome
  • x-linked adrenoleukodystrophy
  • zellweger syndrome

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