Technological advances in obstetrical and neonatal care have led to unprecedented dilemmas regarding life support decisions for extremely premature infants (22 to 25 weeks gestation). Many experts advocate for involving parents in life support treatment decisions because of the high mortality and morbidity for extremely premature infants, and because parents bear the devastating emotional and financial consequences of these decisions. Thus, guided by the Decision Support Framework, the purpose of this qualitative descriptive longitudinal study is to describe parent determinants of decisions regarding life support and end of life care made over time prenatally and postnatally for extremely premature infants. We will describe from the perspectives of parents, nurses, and physicians, the parent determinants of decisions regarding: (a) life support made prenatally over time for the care of infants who are expected to be born between 22 and 25 gestation; (b) life support made postnatally over time for care of extremely premature infants; and (c) end of life care for extremely premature infants who die within the first two months of age. Using collective case study methodology, data will be collected from 50 cases using the following criteria: (a) parent(s) who has been involved in a discussion with a physician about life support decisions because of the potential birth of their infant between 22 0/7 and 25 6/7 weeks gestation or the partner of this parent who was included by the parent in life support decisions; (b) parental age of 18 or over; and (c) English speaking parents. Each case will consist of parents of the infant and obstetrical and neonatal physicians and nurses. At least two (1 prenatal, 1 postnatal) tape-recorded interviews will be conducted with each parent. Weekly prenatal contacts will be made to parents after the prenatal interview until delivery of the infant or 25 weeks gestation to assess changes in life support decisions. Weekly postnatal contacts will be made for infants born between 22 and 25 weeks gestation after the postnatal interview until the infant is 28 days of age or the first two months of age if unstable at 28 days. If the infant has died during the data collection period, parents will be interviewed several weeks after the death. With the parents' permission, prenatal and postnatal interviews will be done with the physicians and nurses, and weekly contacts will be made with the physicians to determine changes in life support. Hospital records will be reviewed for maternal obstetrical history, infant medical history, and documentation of decisions regarding life support and end of life care for the infant. Analysis of data will focus on summarizing each case and identifying themes within and across cases. Data from this study will be used in a subsequent intervention study.
