title: Supporting parents' decision making surrounding the anticipated birth of an extremely premature infant.
abstract: Parents who are at risk for giving birth to an extremely premature infant, defined as 22 to 25 weeks' gestation, can find themselves faced with urgent treatment decisions for their unborn infant that have life-altering consequences. Despite the recommendation for involving parents in decision making for these infants, there is limited evidence regarding guidelines for involving parents. In this article, we describe a case from a larger collective case study that examines the decision making and the decision support needs of parents regarding life support decisions made over time (prenatally and postnatally) for extremely premature infants from the perceptions of parents, physicians, and nurses. For this case study, we describe decisions that were made during the antenatal hospitalization of the mother whose infant was stillborn, the support the parents received, and advice for healthcare professionals for improving care to families. For this case, the mother and father, a physician, and 2 nurses were interviewed before the birth of the infant. The findings in this case study demonstrate the importance of the nurse being present when information is given to parents, of informing with compassion, and helping parents to understand treatment options and decisions.
authors.affiliation: Department of Women, Children, and Family Health Science, University of Illinois at Chicago College of Nursing, Chicago, Illinois 60612, USA. karenk@uic.edu
authors.forename: Karen
authors.initials: K
authors.lastname: Kavanaugh
authors.forename: Teresa T
authors.initials: TT
authors.lastname: Moro
authors.forename: Teresa A
authors.initials: TA
authors.lastname: Savage
authors.forename: Maria
authors.initials: M
authors.lastname: Reyes
authors.forename: Marguerite
authors.initials: M
authors.lastname: Wydra
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D020380:Needs Assessment; D017283:Neonatal Nursing; D024802:Nurse's Role / Q000523:psychology; D009730:Nursing Assessment; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology; D010353:Patient Education as Topic; D011247:Pregnancy; D011262:Pregnancy Trimester, Second; D047928:Premature Birth / Q000523:psychology*; D012944:Social Support; D050497:Stillbirth / Q000523:psychology; D011795:Surveys and Questionnaires