Ensuring public information on screening is easily accessible and easy to understand is important to help people make personal informed choices about screening. To make sure that information reaches women and their families at the right time, in the right format and from the right sources, NHS England regularly reviews how public facing information is viewed through behavioural insight work.
About non-invasive prenatal testing (NIPT)
In 2021, the NHS added NIPT to the existing fetal anomaly screening programme (FASP), following a recommendation from the UK National Screening Committee (UK NSC). The UK NSC recommended that the NHS undertake a three-year in-service evaluation of the roll-out of NIPT in England.
All eligible pregnant women in England are offered prenatal screening tests to assess the chance of their baby having Down’s syndrome, Edwards’ syndrome or Patau’s syndrome. Those who receive a higher chance result from either the NHS combined or the quadruple test are offered NIPT as a secondary screening test, to further test for the three conditions.
Before the evaluative roll-out of NIPT, women only had the choice of having no further screening or having a diagnostic test such as chorionic villus sampling or an amniocentesis. These diagnostic tests carry a small risk of miscarriage. The national introduction of the NIPT screening test gives women access to more accurate information about their pregnancy, in a safer way.
As part of the in-service evaluation of NIPT, NHS England wanted to better understand how well-informed women felt about their screening options at different stages of the pathway.
Public facing resources
In collaboration with Thinks Insight & Strategy, we employed a mixed-method approach to the insight work, to find out how women understood existing resources. We divided it into three qualitative stages alongside a quantitative survey and engaged with pregnant women from diverse ethnic and socio-economic backgrounds across England.
Participants included women currently 20+ weeks pregnant or those who were pregnant within the previous 12 months.
As part of the insight work, participants were asked to review two sets of resources Introduction and summary animation – GOV.UK and Down’s syndrome, Edwards’ syndrome and Patau’s syndrome – GOV.UK.
The results
81% of women felt well-informed throughout the NIPT process. This reflects the dedication of maternity healthcare professionals and the quality of public information resources available.
What women value most
The insight work highlighted several key factors that contributed to positive screening experiences. Women appreciated the balance within the information provided, saying they give sufficient detail without being overwhelming, during an already information-heavy period of their pregnancy journey.
The animated resource received praise for its engaging, colourful presentation and jargon-free approach. These elements help women digest complex medical information during what can be an exciting but anxious time. Most importantly, women valued that the information clearly communicated screening as a choice, enabling them to make informed decisions aligned with their personal circumstances.
The central role of midwives
One of the most significant findings was the trusting relationship between women and their midwives. Healthcare professionals (HCPs), particularly midwives, remain the most valued source of screening information. This relationship represents both an opportunity and a responsibility – midwife interactions have the potential to shape women’s decisions and build crucial knowledge for informed decision-making.
However, women often receive screening information verbally alongside large volumes of other pregnancy-related information. While most feel comfortable relying on their midwife’s verbal communication, many struggle to retain specific details, leading to unanswered questions about the screening process.
Areas for improvement
While the overall picture is positive, the insight work identified specific improvements that could enhance women’s experiences.
- Make it easier for midwives to access high-quality resources.
- Develop resources for midwives so that information is shared with women in a timely and consistent manner.
- Participants felt a step-by-step process would help clarify the various stages from the initial screening tests through to the NIPT screening test and results process.
- More details should be provided on the different conditions screened for, what they mean and what their impact would be.
NHS England’s response
We have addressed these areas of improvement by
- producing a business card to signpost to the information
- developing posters for maternity and primary care settings.
We are delighted that these are now available for use by screening and vaccination teams and other health care professionals to improve awareness of Screening Tests for You and Your Baby. Prompts about maternity vaccines are included.
Providers can download posters and a display screen video file for clinics and waiting rooms from CommsLink or the Vaccination & Screening FutureNHS workspace.
A business card (product number ANNB002BC) will be available to order shortly from APS.
Looking forward
The insight work provides a solid foundation for enhancing public facing information provided about the screening process. By understanding women’s experiences, concerns, and information needs, we can continue to develop and improve the information need to make personal informed choices about their pregnancy screening.
Midwives, as the most trusted source of information during a women’s pregnancy journey, will be central to the continued improvement of providing women with the most accurate information and enabling them to make informed choices. We held four online sessions with midwives across England to discuss this insight, helping them to shape the information provided to women in the future.
Through consistent evaluation and refinement, we can ensure that screening information reaches every woman at the right time, in the right format, and from trusted sources.