Continuity and change in mothers' narratives of perinatal hospice

(1) To broadly explore the experiences of women who chose to continue pregnancies affected by lethal fetal diagnoses and (2) to develop knowledge useful to nurses and other healthcare professionals who provide perinatal hospice (PH) care.

Qualitative descriptive study using narrative analysis.

Fifteen women who learned during their pregnancies of a lethal fetal diagnosis and chose to continue the affected pregnancies.

Participants' stories of their PH experiences were recorded in face-to-face interviews. A qualitative approach using narrative analysis was used to identify themes and develop suggestions for care.

The element of time was prevalent in mothers' stories. Some aspects of mothers' 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 transient phases of highs and lows. Drawing personal meanings or life lessons was the main way mothers connected their experiences to their present lives.

Mothers' descriptions of their experiences can enhance nurses' understanding of perinatal loss. Established care practices, such as birth planning and creating mementoes, were supported. Nurses can help mothers experiencing loss by elucidating and reflecting their personal meanings.