Unexpected Diagnosis of Fetal Abnormality: Women’s Encounters with Caregivers

BACKGROUND: It is acknowledged that health professionals have difficulty with breaking bad news. However, relatively little research has been conducted on the experiences of women who have had a fetal anomaly detected at the routine pregnancy ultrasound examination. The study objective was to explore women's experiences of encounters with caregivers after the diagnosis of fetal anomaly at the routine second trimester ultrasound scan. METHODS: The theoretical perspective of symbolic interactionism guided this study design. A purposive sample of 38 women, at low risk of fetal abnormality, who received a diagnosis of a fetal abnormality in a tertiary referral center in Ireland, were recruited to participate. An in-depth interview was conducted within 4-6 weeks of the diagnosis. Data were collected between April 2004 and August 2005 and analyzed using the constant comparative method. RESULTS: Six categories in relation to women's encounters with caregivers emerged: information sharing, timing of referral, getting to see the expert, describing the anomaly, availability of written information, and continuity of caregiver. Once an anomaly was suspected, women wanted information quickly, including prompt referral to the fetal medicine specialist for confirmation of the diagnosis. Supplementary written information was seen as essential to enhance understanding and to assist women in informing significant others. Continuity of caregiver and empathy from staff were valued strongly. CONCLUSIONS: The way in which adverse diagnoses are communicated to parents leaves room for improvement. Health professionals should receive specific education on how to break bad news sensitively to a vulnerable population. A specialist midwifery or nursing role to provide support for parents after diagnosis is recommended.