title: More than information: a qualitative study of parents' perspectives on neonatal intensive care at the extremes of prematurity.
abstract: OBJECTIVE
  To describe parental perceptions of decision making concerning their extremely premature newborns who received care in a level III neonatal intensive care unit (NICU).
  
  
  METHODS
  Seven parents of preterm infants who were born at 24 to 26 weeks' gestation at a western Canadian tertiary NICU.
  
  
  METHODS
  Qualitative, interpretive description, semistructured interviews.
  
  
  METHODS
  The first author conducted interviews with both parents together or the mother alone. Interviews were recorded, transcribed, and analyzed.
  
  
  RESULTS
  Three main themes related to decision making, culture shock, and relationships emerged: (1) decision making before and in the NICU: moving beyond information, (2) culture shock in the NICU: plunging into a strange land, and (3) relationships in the NICU: enduring in a strange land.
  
  
  CONCLUSIONS
  Although information and decision making are interconnected and fundamental to parents' experiences of their preterm baby's NICU stay, they also identified the culture and language of the NICU and genuine relationships formed with healthcare professionals as significantly influencing their experiences.
authors.affiliation: Royal Alexandra Hospital, Alberta, Canada. dawn.pepper@albertahealthservices.ca
authors.forename: Dawn
authors.initials: D
authors.lastname: Pepper
authors.forename: Gwen
authors.initials: G
authors.lastname: Rempel
authors.forename: Wendy
authors.initials: W
authors.lastname: Austin
authors.forename: Christine
authors.initials: C
authors.lastname: Ceci
authors.forename: Leonora
authors.initials: L
authors.lastname: Hendson
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002170:Canada; D003144:Communication Barriers; D003258:Consumer Behavior; D054521:Cultural Competency; D003657:Decision Making / Q000941:ethics; D005260:Female; D006801:Humans; D062071:Infant, Extremely Premature; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000941:ethics / Q000458:organization & administration; D015931:Intensive Care, Neonatal / Q000379:methods / Q000523:psychology / Q000592:standards; D008016:Life Change Events; D008297:Male; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D012938:Social Perception