More than information: A qualitative study of parents' perspectives on neonatal intensive care at the extremes of prematurity

PURPOSE: To describe parental perceptions of decision making concerning their extremely premature newborns who received care in a level III neonatal intensive care unit (NICU). SUBJECTS: Seven parents of preterm infants who were born at 24 to 26 weeks' gestation at a western Canadian tertiary NICU. DESIGN: 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.