https://doi.org/10.1038/s41416-026-03551-6
Behind each decision are questions about why screening is needed without any symptom, fear of cancer or pain, previous healthcare experiences, religious and cultural beliefs, work and caring responsibilities, and whether services feel accessible and trustworthy.
Our study, Black women’s decisions about participating in breast cancer screening in the UK: A qualitative study, explored what factors shape the decisions of Black African and Black Caribbean women.
Why we undertook the study
Black women participate in breast screening at lower rates than White women in the UK. Previous research had identified several possible barriers, but relatively little UK research had focused specifically on women who were currently eligible for NHS breast screening, including women who had never attended.
We wanted to move beyond broad explanations and hear directly from women making real screening decisions.
Rather than asking only why women did not attend, we explored what encouraged attendance, what discouraged it and what women believed could improve their experiences.
Listening to different experiences - Creating space for open conversations
Between August 2024 and January 2025, we conducted seven focus groups and one individual interview with 47 Black African and Black Caribbean women aged 50–71 years. Thirty women attended screening whenever invited, while 17 had attended inconsistently or had never attended.
Including women with different screening histories allowed us to compare experiences and understand both participation and non-participation.
The focus groups created space for women to speak openly, compare experiences and respond to one another. As the lead researcher, a Black British woman and registered nurse, I found that my cultural and professional background helped me establish rapport. However, I also reflected continually on how my own experiences could shape the conversations and interpretation.
Patient and public contributors helped refine the study materials and recruitment approach so that the research was understandable, respectful and culturally appropriate.
Screening decisions were shaped by more than one factor
Familiarity with breast screening varied considerably. Some women, particularly those born outside the UK, knew little about organised screening before receiving their first NHS invitation. Several questioned why they needed a mammogram when they felt healthy and had no symptoms. Some considered checking their own breasts, or having previously received a normal result, sufficient. This revealed an important communication gap: breast screening aims to identify possible changes before symptoms appear, but that purpose was not always understood. Black Caribbean women who were born in the UK or had lived here for longer often described greater familiarity with the NHS screening programme. This reinforced the importance of not treating Black women as a single, uniform group.
Fear extended beyond the mammogram
Fear was present across many discussions, but it took different forms. Women spoke about fear of a cancer diagnosis, anticipated mammogram pain, radiation, inaccurate results and the possibility of treatment such as mastectomy. Cancer was sometimes associated so strongly with death that women avoided saying the word itself.
For some non-attenders, these fears were combined with uncertainty about who would perform the mammogram and whether they would be treated respectfully.
Faith also influenced decisions in different ways. Some women regarded screening as compatible with their religious beliefs and a responsible way of protecting their health. Others believed that illness was not permitted in their bodies through faith. Muslim participants also highlighted the importance of being assured that a female mammographer would conduct the examination.
These differences showed why screening communication needs to recognise variation within Black African and Black Caribbean communities.
Participants wanted greater flexibility
Women’s decisions were shaped not only by their beliefs and responsibilities, but also by how screening services were organised and experienced.
Fixed appointment times, difficulties obtaining time away from work, caring responsibilities, travel distance and unfamiliar screening locations could all make attendance harder. Some women described missing appointments because they could not obtain leave or rearrange their appointment easily.
Participants wanted more flexible services, including self-booking, evening or weekend appointments and screening locations closer to where they lived. Community-based or mobile screening units were viewed positively because they could reduce travel difficulties and make screening feel more convenient and familiar.
Previous healthcare experiences also affected trust. Some women described feeling dismissed, poorly listened to or inadequately informed. During mammography, a lack of explanation could increase anxiety, while clear and respectful communication helped women feel prepared and reassured.
Improving participation therefore requires more than encouraging women to prioritise screening. Services must also reduce practical barriers, provide flexibility and ensure that women receive clear information and respectful care.
The discussions sometimes changed minds
One of the most memorable aspects of the study was seeing women influence one another during the focus groups.
Women who regularly attended screening challenged misconceptions, described their experiences and reassured others about pain and the procedure. Some women who had previously ignored invitations said that the discussion had encouraged them to reconsider.
This suggested that trusted peer conversations may be powerful. Written information remains important, but women may also need opportunities to ask questions, hear relatable experiences and discuss their concerns without judgement.
What women believed should change
Participants did not simply identify barriers; they also proposed practical improvements.
They wanted shorter and clearer information, videos and visual resources, reminders beyond formal letters, and images that reflected Black women. They also suggested community-based awareness activities, trusted community champions and stronger links between primary care and breast screening services.
The findings showed that there is unlikely to be one solution for everyone. Supporting participation requires attention to knowledge, fear, trust, communication and access to preventive healthcare services
Behind every screening statistic is a woman balancing personal beliefs, healthcare experiences and everyday pressures. Listening to those women is essential if breast screening is to become more understandable, reassuring and accessible.