Abstract
OBJECTIVES: When parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby. METHODS: This study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents' experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison. RESULTS: Thirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents' experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk-benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets. CONCLUSION: For shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents' subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.