resources
Testing for Down’s syndrome in pregnancy
Louise Jenkins, senior lecturer in midwifery at Anglia Ruskin University, UK, reviews Testing for Down’s syndrome in pregnancy by the Elfrida Society, for the NHS fetal anomaly screening programme. Available to download free from www.fetalanomaly.screening.nhs. uk/publicationsandleaflets
Understanding the tests that are offered by health professionals during pregnancy is daunting for everyone, whether they are pregnant for the first, second or tenth time, and whether they have learning disabilities or not.
This booklet was written by the Elfrida Society, a charity that helps adults with learning difficulties, for the NHS fetal anomaly screening programme, the government organisation that oversees the screening tests offered to pregnant women during pregnancy. It is designed to explain the screening tests offered for detecting Down’s syndrome in pregnancy to adults with learning difficulties.
The booklet is logically laid out and gives information to help the reader decide whether or not to have the initial screening tests. It then goes on to discuss getting the results, and diagnostic testing such as amniocentesis and chorionic villus sampling, and the results of these tests. The final section is about the potential decisions after receiving the results, including keeping the baby, adoption and abortion.
It is very clearly written, and uses simplified phrases in plain English to help to explain incredibly complicated concepts and ideas. It also contains space to write down the contact details of doctors and midwives, although it may also have been useful to have space to write down any questions.
The end of the book provides contact information for other charities and support groups including the Down’s Syndrome Association, Contact a Family, and Antenatal Results and Choices. This could have been enhanced further by providing details for healthtalkonline, a website that provides transcripts and pod casts of other parents’ experiences of pregnancy including screening tests and childcare (www.healthtalkonline.org/Pregnancy_children/).
The booklet is beautifully illustrated by Mandy Ollis, and her pictures enhance the meaning of the words, both as easily understood diagrams, but also in conveying the emotion that may be felt in each situation.
Although it was written specifically for parents with learning difficulties, this booklet will be an invaluable resource to anyone who finds understanding the screening tests offered in pregnancy daunting, whether they have a learning disability or not. In particular the clear use of terminology will be useful for people who do not speak English as their first language.
The booklet will also be useful for midwifery students, practising midwives and general practitioners because it provides alternative explanations of screening tests and allows us to look again at our explanations of tests for Down’s syndrome to prospective parents. In particular the section on understanding results and risk factors is very good. The booklet does not assume any prior knowledge or understanding and will be helpful for family and carers supporting those with learning disabilities through testing for Down’s syndrome in pregnancy.
Overall, this booklet is an excellent resource which makes understanding the tests offered for Down’s syndrome in pregnancy clear. Whatever your background, I would highly recommend reading it to improve your understanding when considering these daunting but important tests.