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.