The research was funded by the Foundation for People with Learning Disabilities, part of the Mental Health Foundation.
Around 700,000 women get pregnant in the UK every year, with more than 95 per cent of these pregnancies resulting in the birth of a healthy baby. However, in a few cases, conditions such as Down syndrome, spina bifida or congenital heart disease can occur, which affect the baby's mental or physical development.
If mums-to-be are screened and are given adequate information early on, they and their partners can then make decisions about how best to deal with their situation. This may involve preparing for special care that will be needed after the birth, or choosing to terminate the pregnancy. Other parents may choose not to have screening at all.
At present, women are offered screening at between 11 and 16 weeks for Down syndrome and a detailed ultrasound at 19 or 20 weeks which can reveal other conditions.
Researchers gathered views from 135 prospective parents and 100 health professionals, mainly midwives, across the UK to find out what sort of information was given out at antenatal screenings and to find out how they felt the process could be improved. Their findings included:
- Parents felt that they did not have enough time to consider their decisions and that sometimes screening was not discussed until the second trimester. Many midwives said that they did not have enough time to spend on the issue of screening.
- Parents and midwives both felt that too much information was given about birth and postnatal care at early appointments at the expense of information about screening.
- Concerns were raised about how parents who have difficulty reading or those with English as a second language access printed information.
- Pregnant women and their partners felt that a decision about screening should be made by both parents but most midwives said that they only involved the father ‘if they happened to be present’.
- Concerns were expressed about the way that having a child with Down syndrome is presented as a wholly negative experience.
The report concludes by saying that ‘there are significant groups of parents who are being given insufficient opportunity to consider the options’ and calls for health bosses to introduce more information that is not written such as DVD or book that uses images to communicate key points. It also calls for more discussion of issues around screening between midwives and parents, with discussion of things like labour, birth and postnatal care left to a later stage in the pregnancy.
Dr Skirton said:
“Making sure parents have a real choice about screening is important. They 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.
“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 research has already been presented to the head of the antenatal section of the UK National Screening Committee and Dr Skirton and Dr Barr are hopeful that it could lead to improvements being made to the service.
Alison Giraud-Saunders, Co-director of the Foundation for People with Learning Disabilities, said:
“We funded this research because we feel strongly that parents deserve the best possible information with which to make their own decisions around antenatal screening. Our previous research found that parents are often left to make decisions without the balanced and timely information they need. This project has delivered clear recommendations on how parents should be better supported, and it is encouraging that the UK National Screening Committee has shown an interest in the research.”
ENDS
Notes to Editors
For more information, telephone Liz Parks in the University of Plymouth press office on 01752 588003.
About the University of Plymouth
Consistently ranked one of the top modern universities in the UK, Plymouth has a strong record of excellence, enterprise and innovation across its teaching and research activities and is distinguished by its long-term engagement with employers.
With around 30,000 students, including those studying at its partner FE colleges throughout the South West, the university is one of largest in the UK. With four government-funded Centres for Excellence in Teaching & Learning, the maximum awarded to any single institution, the university enjoys a high rate of graduate employment and has recently invested more than £110 million in state-of-the-art facilities to enhance the student experience.
Plymouth has a national and international research profile. In the Research Assessment Exercise 2001, 11 subject areas were graded ‘4’ or ‘5’ and for the RAE 2008 return the university has doubled the number of staff and increased the number of research outputs by 70%.
As the enterprise university, the University of Plymouth delivers outstanding economic, social and cultural return for business, the professions, the public sector and its wider community.
About the Foundation for People with Learning Disabilities
The Foundation for People with Learning Disabilities promotes the rights, quality of life and opportunities of people with learning disabilities and their families.
For further information, please contact the press office team on 020 7803 1130/28/26.
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