title: "Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis.
abstract: CONCLUSIONS
  Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
  
  
  METHODS
  This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
  
  
  RESULTS
  Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
  
  
  CONCLUSIONS
  The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
authors.affiliation: University of North Carolina Greensboro, USA. Electronic address: d_cotear@uncg.edu.
authors.forename: Denise
authors.initials: D
authors.lastname: Côté-Arsenault
authors.affiliation: Division of Palliative Care, University of Rochester Medical Center, USA.
authors.forename: Erin
authors.initials: E
authors.lastname: Denney-Koelsch
mesh_terms: D000328:Adult; D002755:Choice Behavior; D004644:Emotions; D005260:Female; D005315:Fetal Diseases / Q000175:diagnosis* / Q000401:mortality; D006801:Humans; D007223:Infant; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care; D010290:Parents / Q000523:psychology*; D018743:Perinatal Care; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D036301:Qualitative Research; D055815:Young Adult
keywords: Developmental task; Lethal fetal diagnosis; Longitudinal; Perinatal palliative care; Phenomenology; Pregnancy; Prenatal diagnosis; USA