Women's Experiences With Palliative Care During Pregnancy.
Andrea Crawford, Amelia Hopkin, Mary Rindler and 3 others
PMID 33775641WHAT IT FOUND
Women who had life-limiting fetal diagnoses valued memorabilia, ultrasound records, and program support to talk about death before birth.
They described empathy and peer support as important during pregnancy.
Key findings
01Participants described tangible items and pregnancy records, including photographs, hand and foot molds, hair, and an ultrasound video, as evidence that their baby lived.
02Seven of the 12 women described comfort and empathy from perinatal palliative care counselors and peer support as important during pregnancy.
03Participants described talking about the baby's death before birth as important, and one said the program helped parents do this rather than wait.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study interviewed only women, not partners or other family members, so it does not describe their experiences. The sample was small and self-selected from a perinatal palliative care program database and a private social media group; women who did not respond, were less satisfied, or were not ready to talk may be missing. The authors said they had no demographic data such as race/ethnicity, age, marital status, religious preferences, or pregnancy history, so the findings cannot be compared across groups. The response rate to mailed invitations was very low, and it is unknown whether letters were returned or not received. Participants may have used the program more than other women, and the local program's services may differ from other perinatal palliative care programs. Time since contact with the program and the child's death was not taken into account during analysis. The study used interviews and content analysis, not a comparison group or outcome measures, so it cannot show that the program caused coping or reduced distress.
Declared interests
The authors reported no conflicts of interest or relevant financial disclosures.
The easy way to misread this
Do not read this as evidence that perinatal palliative care programs reduce grief or improve outcomes. The study interviewed 12 women who had already used one program, had no comparison group, and reported themes rather than measured effects. The program included emotional, social, and practical support, pregnancy and birth planning, referrals to community resources, tangible items, support groups, and staff such as nurses and grief specialists, so the contribution of any single component cannot be separated.