Serum screening for Down's syndrome: some women's experiences

Abstract

Objectives: To describe the experiences of a small group of women who had positive results after serum screening for Down's syndrome.

Design: Semistructured telephone interviews and correspondence with women after a positive screening result (four women) negative amniocentesis results (eight), or termination of a pregnancy with a confirmed abnormality (eight).

Subjects: 20 women who contacted Support After Termination For Abnormality about their experiences of serum screening for Down's syndrome.

Main outcome measures: Women's knowledge and understanding of the test; staff misconceptions; communication of results; how women coped with the diagnostic process; attitudes to the test and to termination of abnormal fetuses.

Results: All women were made anxious by their positive screening test, no matter how they were told. The women's experiences suggested that medical staff were unclear about the implications of screening tests and how to interpret risk. Even after receipt of negative amniocentesis results some women remained anxious. Staff did not always recognise women's concerns while awaiting amniocentesis results.

Conclusions: The way in which serum screening is being implemented does not always meet the needs of women with positive results. Some of the problems were not specific to screening for Down's syndrome. When screening tests are introduced policies should be adopted to ensure appropriate support for participants.