What constitutes ‘balanced information in the practitioners’ portrayals of Down's syndrome?

Abstract

Objective: to explore the information that practitioners perceive they give to pregnant women about the condition of Down's syndrome, and to look at some influences on the construction of this information.

Design: qualitative study incorporating semi-structured interviews with practitioners followed by multidisciplinary discussion groups led by a health-care ethicist.

Setting: inner-city teaching hospital and district general hospital situated in South East England.

Participants: seventy practitioners whose work relates directly or indirectly to perinatal care.

Findings: although women were seen to vary in their knowledge about Down's syndrome, practitioners felt that many did not understand the basic features of the condition. Practitioners themselves rarely had any practical experience or knowledge of people with Down's syndrome. This led to a reliance on ‘medical textbook’ information, which tends to focus primarily on the potential problems of the condition. Due to lack of time, practitioners also relied on the use of information leaflets. However, much more space in these was devoted to explaining the actual screening process rather than the condition, and the very brief descriptions of Down's syndrome lacked any positive statements.

Implications for practice: informed choice in antenatal screening must be based on balanced information about ‘screened for’ conditions. Education about conditions set within a broader context of disability awareness could help to avoid the ‘checklist’ type approach used by many respondents. Practitioners and maternity units as a whole should reflect critically on the origins of the information they are conveying to prospective parents about what it means to live with Down's syndrome. Midwives and others involved in prenatal screening need to be aware of their own feelings about screening and disability. Midwives should also be involved in the planning of any future antenatal screening developments within their workplaces, and it is essential that they prospectively highlight factors such as lack of time and knowledge, which they feel inhibits their ability to facilitate informed choice. Research is needed which explores the consequences of allocating substantial resources into ensuring that women are fully informed about an increasingly complex antenatal screening process.