Defining psychosocial distress in pregnancy with fetal anomaly: A Delphi consensus study to identify core domains

To define psychosocial distress in pregnancies affected by fetal anomaly and identify its core domains and indicators.

We conducted a three-round Delphi study with an expert panel of individuals with lived experience of pregnancy with fetal anomaly and maternal-fetal care professionals. Round 1 open-ended responses were analyzed using directed content analysis and integrated with the literature to generate an initial indicator pool. In Rounds 2 and 3, panelists rated indicator relevance and clarity; consensus was defined a priori as an item-level content validity index (I-CVI) ≥0.79.

Twenty-two panelists (14 professional and 8 lived experience experts) participated, with 82% retention in Round 2 and 77% in Round 3. Of 49 initial indicators, 47 reached consensus across four domains: emotional burden, ambiguous loss, social and relational vulnerability, and healthcare-related distress. All healthcare-related distress indicators reached consensus in Round 2.

Psychosocial distress in pregnancy with fetal anomaly is multidimensional, arising from the interaction of emotional responses, social pressures, and healthcare experiences, and extends beyond symptoms of mental health diagnoses. This framework provides a foundation for tailored screening approaches and intervention development to support patient-centered maternal-fetal care.