Continuing Pregnancy Despite Prenatal Diagnosis of a Life-Limiting Fetal Anomaly and Need for Perinatal Palliative Care Service Package: A Qualitative Study from Iran

Abstract

Background: Prenatal diagnosis of fetal anomalies leads to parental psychological stress and decision-making challenges to continue or terminate pregnancy. Continuing pregnancy despite fetal anomaly can cause confusion, anxiety and depression in parents, so it seems necessary to be aware of their needs and appropriately respond to them. This study was conducted to exploring experiences about Continuation Pregnancy despite fetal anomaly in the socio-cultural context of Iran. Methods: Qualitative exploratory descriptive study, 35 participants including 15 pregnant women with Life-Limiting fetal anomaly diagnosis, 5 family members and 15 perinatal care providers were selected purposefully. Data were gathered by individual interview and were written, important phrases were coded, by grouping same codes, main and sub categories were extracted. Results: In this study, 4 main categories, each with a number of subcategories were extracted. The main categories included: “mental health counseling, support parents to accept and cope with event, ethical consideration during end-of-life care of baby, providing perinatal palliative care)”. Conclusion: The results showed that parents who forcibly or voluntarily continue pregnancy after a wearing of fetal anomalies, have extensive care needs during pregnancy and after birth that are not sufficiently met. Therefore, it seems that a comprehensive service package of perinatal palliative care appropriate for Iran socio- cultural context is necessary.

Keywords

• fetal anomaly
• palliative care
• prenatal diagnosis
• qualitative research