Lalor, G. J., Devane, D., & Begley, C. M. (2007). Birth, 14, 80-88

The authors studied low-risk pregnant women at a tertiary referral hospital in Ireland who, during routine second trimester ultrasound, were found to be carrying a fetus with an anomaly. A total of 38 women were interviewed. Because 3 women were pregnant with twins, there was a total of 41 fetuses, 39 of which had anomalies. The anomalies varied from lethal conditions, such as anencephaly, to suspicious findings with normal karyotypes. Important to the study is the consideration that termination of pregnancy is not allowed in Ireland. The women approached the ultrasound with anticipation of reassurance of normalcy, whereas the clinicians' purpose was to detect any abnormality. The women were invited to participate in the study via a mailed invitation so that any effects of subtle coercion would be minimized. Of the 62 women invited to participate, 38 agreed to do so and were interviewed 4 to 6 weeks after the diagnosis. Data were analyzed using the constant comparative method, and the framework guiding the study was symbolic interactionism.

Six themes emerged: information sharing, timing of referral, getting to see the expert, describing the anomaly to parents, availability of written information, and continuity of caregiver. Women described a need for prompt information about the anomaly and noted that delays in getting this information added to their distress. They said that referral to a fetal medicine specialist within 24 hours after the ultrasound was preferable. They had high expectations of the visit with the specialist and were dissatisfied if they received impersonal or insensitive care at this point in their treatment. They also were frustrated if trainees in the environment added to the time it took for them to receive information, although none was dissatisfied if a trainee participated in the consultation. They consistently raised the issue of healthcare professionals' inappropriate use of medical terminology and found it helpful when the diagnosis was explained using a combination of ultrasound images, percentile charts, and visual diagrams. All women described the need for supplementary written information, and women who continued the pregnancy valued the continuity of seeing the same clinicians on repeated visits. The authors noted that there may be significant differences in women's experiences in countries in which termination of pregnancy is viewed by professionals as a more appropriate course of action, noting that although some women in the study eventually traveled to England for pregnancy termination, the environmental expectation was that these women would continue with the pregnancy, even in the face of a lethal anomaly.

Judith A. Lewis