Newborn Screening: working with parents.
Dr Sandy Oliver, Parent Support Research, UK Newborn Screening Programme Centre.

Challenges for extended newborn screening arise from advances in technology and raised expectations of informed choice. With newborns being screened for more conditions, there are more tests, and parents experience anxious waiting times. Screening for some conditions identifies newborn carriers. Some parents have to cope with screening results that are uncertain and treatments that have uncertain effects. They are also being asked to consent to the use of residual bloodspots. This is a long way from the past experiences of glossing over the transient pain of a single heel prick and being told that 'no news is good news'. Parents have to cope with more information, more decisions, more anxiety, more responsibility for decisions about screening and, for some parents, more responsibility for dealing with information about carrier status. There are also new roles for parents in developing information resources and policies to address these challenges, and I shall describe these.

There is some evidence to suggest that despite these difficulties, parents favour newborn screening, and parents of carriers favour knowing the carrier status, and anticipate telling their child in due course. Health professionals need help in supporting parents through extended screening pathways. Communication policies and resources are being developed with parents and health professionals by the UK Newborn Screening Programme Centre.

The National Screening Committee promotes informed choice for screening; it is seen as a programme to assist in the early identification of diseases and not a guarantee of diagnosis or cure. However, parents have usually been given information only about the benefits of screening. Parents would like to know 'just the basics': why the test is important; what conditions are being screened and how common they are; what the test involves; when and how results will be received; and what happens if a result is positive.

We set about producing materials for parents and health professionals by matching the screening pathway to: research evidence about communication with parents; examples of information given to parents; and information that parents say they want and that health professionals say they need. We convened mixed groups of parents and professionals to consider this information and, through consensus development methods, draft materials.

Working with parents brings a number of challenges: finding parents of carriers; finding parents of children identified through screening; supporting parents of sick children; the differing structures and working procedures of support groups; and the differing views of individuals. Challenges of working with health professionals include their varied experiences of screening and communication; the differing needs and experiences of various professional groups; moving CF screening from a specialist service to a generalist service; and concerns about legal protection.

In the course of the work we discussed a number of sensitive issues that were difficult to address in parent information: death, reduced life expectancy, DNA testing, citing particular health professions, storing blood spots, the research/ public health divide for use of blood spots, and citing support groups. Nevertheless we have already produced a pre-screening parent leaflet, the text for a leaflet when CF is suspected and text for parents of CF carriers. Our next tasks are producing leaflets for when PKU is suspected, and when CHT is suspected.

Working in this way has helped us develop working relationships with people in the voluntary sector and the NHS who will be using these products and working with us to develop training materials for health professionals.