Fetal anomaly screening: what do women want to know?

AIM: This paper reports a study exploring women's experiences of receiving an adverse diagnosis at a routine second trimester ultrasound examination, and the factors that influenced their preparedness for an adverse finding.
BACKGROUND: Ultrasound has become a routine part of prenatal care offered to pregnant women in most developed countries and technological advances are making it increasingly possible to detect more anomalies, and at earlier gestations. When fetal anomaly detection can be an outcome of the examination, provision of effective information to ensure informed consent for screening remains a challenge.
METHOD: A grounded theory study (n = 38) was carried out in 2004 and 2005 using an in-depth interview within 4 weeks of diagnosis and constant comparative analysis.
FINDINGS: The core category of balancing information emerged, whereby women balanced the expectation of a healthy baby and the non-threatening nature of the ultrasound examination with the shock of an adverse diagnosis. Assumed fetal health was contributed to by being in good health, experiencing normal symptoms of pregnancy and having other healthy children. The majority of women believed that provision of extensive and detailed lists regarding fetal anomaly detection would only cause unnecessary anxiety and worry, and suggested that a less detailed approach is required for a routine screening programme for low-risk pregnancy.
CONCLUSION: The drive to inform all women fully of ultrasound detection rates for specific anomalies may be counter-productive as it will enhance the worry pregnant women already feel in relation to the health of their unborn baby.