‘BALANCE’ IS IN THE EYE OF THE BEHOLDER: PROVIDING INFORMATION TO SUPPORT INFORMED CHOICES IN ANTENATAL SCREENING VIA ANTENATAL SCREENING WEB RESOURCE

Authors: Shenaz Ahmed BSc (Hons) PhD,* Louise Bryant BSc (Hons) PhD and Jenny Hewison BSc (Hons) PhD

Abstract

Objectives The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper
focused on how participants evaluated AnSWeR in terms of providing balanced information. Setting West Yorkshire.

Participants A total of 69 people were drawn from three groups: health professionals, people with personal experience of tested-for conditions (Downs syndrome, cystic fibrosis and spina bifida) and people representing potential users of the resource.

Method Data were collected via focus groups and electronic questionnaires.

Results Participants believed that information about the experience of living with the tested-for conditions and terminating a pregnancy for the conditions were important to support informed antenatal testing and termination decisions. However, there were differences in opinion about whether the information about the tested-for conditions
was balanced or not. Some people felt that the inclusion of photographs of people with the tested-for conditions introduced biases (both positive and negative). Many participants were also of the opinion that AnSWeR presented insufficient information on termination of an affected pregnancy to support informed choice.

Conclusion This study highlighted the difficulty of designing balanced  information about tested-for conditions and a lack of methodology for doing so. It is suggested that AnSWeR currently provides a counterbalance to other websites that focus on the medical aspects of disability. Its aim to provide balanced information
would be aided by increasing the number and range of case studies available on the website.