A Narrative Analysis of Perinatal Hospice Stories

Technology has made it possible to detect abnormal fetal conditions, including lethal anomalies, prior to birth. Women who receive lethal fetal diagnoses during pregnancy face the decision whether to continue or terminate their affected pregnancies. The purpose of this study was to explore and describe women\u27s experiences after the continuation of pregnancies affected by lethal fetal diagnoses and the subsequent loss of their infants. A qualitative, descriptive methodology was chosen for this exploratory study. Fifteen women participants who learned during their pregnancies of lethal fetal diagnoses and chose to continue their pregnancies were recruited from perinatal hospice (PH) support organizations in three states of the Midwestern USA. Participants\u27 stories of their PH experiences were recorded in individual face-to-face interviews. Narrative analysis techniques were used to identify themes and develop suggestions for care. The participants identified themselves as mothers and their fetuses or newborns as babies. Mothers valued caring for and interacting with their babies. Health professionals who affirmed their status as mothers, the value of their babies, and the significance of their losses were perceived as supportive. Invalidating attitudes and behaviors caused significant distress. The element of time was prevalent in mothers\u27 stories. Some aspects of mothers\u27 experiences continued, particularly feelings of love and connection to their babies. Mothers also reported evolving changes in their thoughts and feelings. Personal changes, such as increased compassion, faith, and strength, were frequently mentioned. Mothers described phases of highs and lows. Drawing personal meanings or life-lessons was the main way mothers connected their past experiences to their present lives. Mothers\u27 descriptions of their experiences enhance nurses\u27 understanding of perinatal loss. Established care practices, such as birth planning and creating mementoes, were supported. Nurses and other health professionals can help mothers experiencing loss by elucidating and reflecting their personal meanings. Optimal care of PH mothers should support the development of maternal identity and contact between mothers and newborns when desired. Professionals who care for PH mothers can affirm their motherhood through their behaviors, statements, and attitudes