6th August 2008

Email this Page |

A leading healthcare researcher at the University of Ulster has called for expectant mothers to be given earlier and better information about antenatal screening for Down syndrome.

A UK-wide study co-led by Dr Owen Barr raised concerns about the way the offer of screening is presented to expectant parents, reporting that current arrangement do not always give parents the time or information need to make decisions about their unborn child.

“Our report is not about whether pregnant women should or should not have antenatal screening,” explained Dr Barr, who is Head of the School of Nursing at the University.

 “The study focuses on informed choice and parental consent. It is about whether people are being given the support they need to make an informed choice to accept or reject screening and about the implications and options that may arise,” he said.

The study found that some UK parents felt they were given key information too late into the pregnancy and that the quality of the information was inadequate. Screening for Down syndrome is offered at between 11 and 16 weeks and a detailed ultrasound at 19 or 20 weeks which can reveal other conditions.

Dr Barr said: “Parents need the right information at the right time but information alone is not enough. Every family is different and parents have to be able to think through their decisions, taking into account their own experiences, beliefs and circumstances.”

Dr Barr and Professor Heather Skirton, Deputy Head (for Research), School of Nursing and Community Studies at the University of Plymouth, analysed the views of 135 prospective parents and 100 health professionals, mainly midwives.

Their report says that “there are significant groups of parents who are being given insufficient opportunity to consider the options.”

The research was funded by the Foundation for People with Learning Disabilities, which is part of the Mental Health Foundation. Around 700,000 women become pregnant in the UK every year, with more than 95 per cent of these pregnancies resulting in the birth of a healthy baby.

In England and Wales antenatal screening for Down syndrome is a “universal offer”, Dr Barr explained. Here, hospitals offer screening to every pregnant woman aged 35 and over but not always to younger women. In Northern Ireland, provision of antenatal screening for Down syndrome is inconsistent - and should be standardised, said Dr Barr.

He said: “In Northern Ireland there is no requirement for a universal offer. Individual Trusts have different criteria against which they make a decision on the offer of screening. The offer can depend on which Trust area you live in, or which hospital you visit. There is inconsistency here. If it is to be an offer, then the process and the information about it should be available across Northern Ireland.” 

The study revealed concern about the way having a child with Down syndrome was presented as a largely negative experience. While health professionals could explain the condition, they lacked knowledge about the life experience of the Down syndrome adult.

Dr Skirton said: “Our research has shown that parents think knowing about the life of a person with Down syndrome is important when making their decision about screening, but only half the parents in the study had ever known a person with Down syndrome.

Balanced information about what it is like to have the condition or raise a child with Down syndrome is needed.”

The results also raised concerns about the effectiveness of current information literature on parents with reading difficulties and people whose first language is not English.

The academics have submitted the research findings to the UK National Screening Committee and say they hope it will lead to improvements.

Ends

For further information, please contact:

Martin Cowley
Telephone: 028 71675083
Email: Martin Cowley