Women's Experiences With Palliative Care During Pregnancy

Objective: To explore the experiences of women who received life-limiting fetal diagnoses during pregnancy and support from a perinatal palliative care program.

Design: Descriptive qualitative.

Setting: The perinatal palliative care program is part of a not-for-profit system of 24 hospitals serving the U.S. Intermountain West region.

Participants: A convenience sample of 12 women who experienced pregnancies with life-limiting fetal diagnoses and received care from a perinatal palliative care program.

Methods: Women chose to participate from mailed invitations or responded to a post on private social media and then completed semistructured interviews about their experiences surrounding the fetal diagnoses and support from a perinatal palliative care program. Interviews were approximately 40 minutes in length and were conducted over the phone, recorded, and then transcribed. We performed content analysis by coding, forming categories of similar coded data, and constructing themes by recontextualizing categories through iterative, team-based meetings.

Results: We identified four themes from the data: Importance of Memorabilia to Cope With the Death and Documentation of Pregnancy, Acceptance of Death as Part of the Pregnancy Experience, Continued Life Without a Child, and Importance of Empathy Throughout the Process.

Conclusion: The themes support the existing research findings about the needs of pregnant women as they cope with difficult situations. Our findings show the necessity and importance of perinatal palliative care programs.