7.3.3 Promoting informed choice: Provision of appropriate information and support for parents making decisions about antenatal screening for fetal abnormality (419)

Owen Barr, Senior Lecturer in Nursing, School of Nursing, University of Ulster, Co. Londonderry, United Kingdom Co authors: Heather Skirton o.barr@ulster.ac.uk

Abstract:

Background:

The introduction of the offer of antenatal screening for Down syndrome for all pregnant women in England and Wales this offer has had a mixed reception. Whilst welcomed by some, concerns have also been expressed about the degree of choice afforded to parents as well as the degree that health professionals involved in offering screening are not fully prepared with the information needed to practice competently in this area (Skirton & Barr 2007).

Aims:

To identify the ways in which prospective parents can be supported to make informed decisions.
To provide guidelines on training materials for professionals offering antenatal screening, to augment those that exist already.

Methods:

Six focus groups involving a total of 24 parents and four focus groups involving 25 professionals where held across four regions of England between April – July 2007. Transcripts of the taped discussions and the notes made will be analysed using the process described by Strauss and Corbin. Ethical approval for a multi-site study was obtained from COREC.

Results:

Six main themes were identified were:

Offer of screening ‘a good thing’
Information overload versus opportunities for choice
Screening as an aid to decision making
Emphasis on providing information
Promoting choice versus acceptance of screening offer
Lack of information about the ‘lives’ of people with Down syndrome

Discussion:

The findings highlight if the ‘offer’ of screening is to be realised there needs to be a closer match between the information parents wish to have and that which professionals feel they should provide (Michie et al, 2003). In particular, attention needs to be given to how information about the lives of people with Down syndrome is presented.

Conclusion:

Further information should be prepared to assist professionals involved in providing the offer of antenatal screening for Down syndrome.

Source of Funding: UK - Research Charity/Foundation

Amount in Funding: 50,001 - 100,000

Biography:

Owen Barr has a range of clinical experience within learning disability services in hospital and community services in England and Northern Ireland. In addition he has taught on under graduate and postgraduate nursing courses over the past 15 years, as well as being actively involved in research into learning disability services. He has researched a number of aspects of genetics in learning disability services in the past 7 years and this was the focus on his doctorate studies. He has successfully completed projects in relation to supporting parents of children with learning disabilities who have a child referred for genetic investigation, working with families, the health of people with learning disabilities and access to health services. Owen entered the University of Ulster in 1994 and was appointed as a Senior Lecturer in the Institute of Nursing Research and School of Nursing in September 2004. Owen has written widely about services for people with learning disabilities, support for the families of people with learning disabilities, supporting people receiving personal genetic information and the health of people with learning disabilities. Owen is the Associate Editor of the Journal of Intellectual Disabilities.