“You think everything’s fine and then it starts not being fine”: a qualitative descriptive study exploring the prenatal testing experiences of Black women living in England

How racial inequalities affect maternal outcomes in the UK

Inequalities in maternal health in the UK mean that Black women, who are more than twice as likely to die during or shortly after pregnancy, face some of the worst outcomes during maternity care. There have been calls from professional bodies to change policies to address these issues, but research on the lived experiences of Black women attending maternity services remains limited.

This gap in understanding also applies to other aspects of maternity and reproductive care. For example, the experiences of Black women are under-represented in research on the impact of being offered prenatal screening and testing. Examining their views and experiences is crucial because underrepresentation can lead to policies and guidelines that don’t reflect the specific needs of women from Black communities, perpetuating the inequalities in outcomes for Black women.

How this research explored mothers and families’ experience

By examining the experiences of Black women in England when offered prenatal testing for genetic and chromosomal conditions, this qualitative study aimed to support equitable care for Black communities by addressing their underrepresentation in maternal health research.
To explore these experiences, the researchers spoke with nearly 40 women in semi-structured interviews and created a Patient and Public Involvement (PPI) advisory group made up of Black parents with lived experience, a genetic counsellor, and representatives from parent support organisations (including Black-led groups).

What the research found about Black women’s experiences of prenatal screening

The study highlighted the following key themes representing how women navigated the experience:

• The process of prenatal testing was a deeply emotional journey with many reporting intense periods of anxiety and distress.
  Many participants reported having very little discussion around prenatal testing or felt rushed into agreeing to it. This was despite the chance of finding unexpected and distressing results. When it came to deciding on further tests, people often faced a difficult choice: the tests can be invasive and frightening, sometimes painful, and involved balancing the desire for certainty with fear of miscarriage risk.
• Navigating unequal systems meant that experiences were shaped by inconsistent care, paternalism and racism.
  While some clinicians were compassionate and reassuring, some experiences included clinicians behaving in a dismissive or insensitive way. Women reported subtle and overt racism as well as feeling pressured or judged. They also felt that clinicians could be paternalistic, particularly when discussing testing for sickle cell, instead of supporting people to make their own decisions.
• Anchoring in faith and personal networks because formal support was rarely offered.
  Despite the distress they experienced, few women were signposted to specialist organisations, and several wished they had been offered counselling or peer support. Many women said that they felt isolated and relied heavily on their faith as part of their coping strategies.
• Envisioning better care with more appropriate support.
  Women valued prenatal testing for the information it provided, but many said they needed more time to process results with clearer communication delivered with sensitivity. Even when the decisions they faced after receiving a test result were difficult, regret was generally low.
  
  

To make prenatal testing equitable and supportive for Black families, recommendations from the study included improved communication and informed choice, strengthening training, and developing culturally appropriate resources. The healthcare system also needs to protect mothers’ reproductive autonomy when it comes to testing choices, expand emotional and peer support pathways and address racism and internalised bias.