• bereavement;
  • birth defects;
  • narrative;
  • perinatal hospice;
  • pregnancy

Abstract:  Background:  Perinatal hospice is an option for women who learn during pregnancy that their fetuses are affected by terminal conditions and choose to continue their affected pregnancies. These women face emotional pain and the impending loss of their fetuses or infants. The aims of this study were to explore the experiences of perinatal hospice mothers, to gather knowledge useful to health professionals, and to guide future research.

Methods:  Narrative analysis was performed using the personal stories of 15 women who continued pregnancies affected by lethal fetal anomalies.

Results:  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 behavior caused significant distress among mothers.

Conclusions:  Optimal care of perinatal hospice mothers supports the development of maternal identity and contact between mothers and newborns when desired. Professionals who care for perinatal hospice mothers can affirm their motherhood through their behavior and attitudes. (BIRTH 38:3 September 2011)