1.1. Awareness as a foundation for service success.

Many women emphasised that for a breast cancer risk assessment service to be effective, women would first require greater awareness of breast cancer symptoms, risk factors and the service itself. The majority felt that breast cancer awareness within their age group was limited, particularly regarding the risk of the disease in younger women. Women also noted that official information from sources such as the NHS is not often targeted toward their age group, leaving a gap that is frequently filled by unreliable or misleading content on social media. To address this, women suggested that community-based awareness events would be essential, both to provide accurate information about breast cancer risk factors and to explain the purpose of the risk assessment service:

…having things like today where they can put questions and they ask and they find out things is helping. So, after today they think they are more prone to take the test than they were before, without knowing what it’s about and what is implied. (Summary of discussion via interpreter, Roma-FG2)

They suggested that such events should be tailored to specific communities and delivered in spaces where women feel comfortable and safe, such as community centres or local cultural hubs. Several women also stressed the importance of ensuring that any promotional or educational materials reflect the community being targeted, for example, using culturally appropriate language, images of women from their own backgrounds, and, where possible, having healthcare professionals from within those communities deliver sessions. This approach was seen as particularly important for engaging women from minoritised backgrounds and those with learning disabilities and/or autism, who may be less likely to access information through traditional healthcare settings.

1.2. Clarity of service terminology.

A key aspect of women’s understanding of a breast cancer risk assessment service related to the terminology used to describe it. While some women felt that “breast cancer risk assessment” was clear, others, particularly those whose first language was not English, found the term confusing or anxiety-inducing. The word “risk” was perceived by some as overly harsh or suggestive of a diagnosis, while medical terminology more broadly being viewed as inaccessible. Women suggested alternative phrasing, such as “early detection test,” “breast cancer prevention test,” or even abbreviations, could help avoid misinterpretation and improve comprehension. Importantly, several women highlighted the need for simplified, non-medical language to ensure that the purpose of the service was clear to all communities:

I think for me there’s a difference between risk assessment and cancer screening […] So, I think just explaining from that, when you say risk assessment initially, we’re thinking oh, it’s a cancer screening, we’re thinking it’s a cancer test. But it’s not, it’s how likely you are. (Esha, South Asian (Muslim)-FG1)

1.3. Clarity of the risk assessment process.

Women emphasised the importance of having clear, accessible, and step-by-step information about the process should they wish to take up the offer of breast cancer risk assessment. While some had general ideas about what the assessment might involve, many felt they would need explicit explanations of each component, including its purpose, what it would entail, and how it would benefit them personally. For example, women wanted clear guidance on what to expect depending on their risk category, including an understanding of what the care pathways could look like linked to each risk level (e.g., low, average, above-average and high):

Amara: Are we going to have information leaflets after conducting, giving the DNA sample and whatever? Because if we can have that information explaining what each level means and what we can do that would be more helpful after the face-to-face thing. If we can have that information before we know what to expect when the results come out so we are well prepared.

Maya: To say when you are this level, it means that.

Amara: Yes, this is what it means.

Maya: So, you are aware okay, if they say I am at high risk this is what I can do, so that if the result is coming everyone is already calm and ready to take any results that come their way. (Low socioeconomic-FG1)

Women also highlighted the need for accessible information about available support throughout the process, such as interpreter services, culturally appropriate support, or opportunities to ask questions. They felt that this would be particularly important for women who may face language or communication barriers. Practical strategies to aid understanding, included community events and visual resources like videos. These reflections highlight that clear, accessible communication throughout the process is essential for service coherence, ensuring women fully understand the purpose, steps, and benefits of the risk assessment service.

1.4. Tailored communication of results based on risk level.

As part of their understanding of how the service should work, women reflected on how results should be communicated in a way that supports comprehension and appropriate follow-up. For those found to be at increased risk, many felt it would be essential to discuss results directly with a healthcare professional with appropriate expertise, to ensure they fully understand their risk and the early detection and prevention management options available to them:

I probably would just need to have somebody properly explain everything to me, what it means, what I would need to implement change wise, help making the changes that we need to […] I think the whole thing for me, as long as somebody is friendly and approachable throughout and informative, tells you everything you need to know, everything that you can possibly do to change anything that they can possibly do, just arming you with all the information rather than just leaving you with loads of questions. (Leanne, low socioeconomic-FG3)

Face-to-face (in-person or online) or telephone consultations would be preferred for those found to be at increased risk, with text messages, online portals or phone calls viewed as acceptable for arranging such appointments. Telephone and virtual consultations were particularly valued by women experiencing long-term anxiety and/or depression, as these options are seen as more accessible and less overwhelming than face-to-face appointments:

Low risk, either just a basic letter or email is fine, but anything more than that, some level of like a discussion I think would be helpful. Again, I agree with what’s been said, not just a phone call out of the blue or anything, maybe you just set up an online appointment or online discussion or something would be fine, but something for that level of risk and what it meant for me personally, I’d appreciate it. (Bushra, anxiety and/or depression-FG1)

By contrast, women felt that for those at low or average risk, results could be communicated by letter or text message, provided they were accompanied with breast awareness information. Yet, women suggested, regardless of risk level, all women should have the opportunity to ask questions or receive additional support if needed.

2.1. Primary care access and confidence in delivery.

Many women described primary care as their first point of contact for health concerns and generally trusted their GPs. However, they expressed doubts about the accessibility and reliability of a breast cancer risk assessment delivered exclusively via primary care, due to the significant barriers they encounter when securing appointments. Difficulties in securing timely consultations, experiences of having concerns dismissed, and the pressures on an already overstretched service led to questions about whether the assessment could be implemented consistently. These concerns were particularly pronounced among women from South Asian (Muslim), Black African/Caribbean (all taking part in the low socio-economic groups) and Roma backgrounds, who highlighted how language barriers, limited ability to self-advocate, and systemic inequalities could further restrict access. Women also questioned whether GPs would have the time or willingness to provide adequate follow-up, particularly for those identified as increased risk, given short consultation windows and competing professional demands:

Jada: Would the GP be willing to work with them [secondary care to provide results to those at increased risk] to give that information as well? Because they might say that is extra work for us. I don’t know how you would be able to have that conversation with the GP for them to spare that time to speak to you…

Clara: Getting the appointment with the GP is another concern, because some of them you’ve got to call them up in the morning to get that slot.

Jada: Would the GP be willing as well to accept that from them [secondary care] because that’s extra time for them. (Low socioeconomic-FG1)

2.2. The cumulative burden of risk assessment.

When reflecting on how and where the risk assessment might be delivered, women discussed the practical efforts involved to engage, including transport access, location, and appointment availability. They noted that hospital-based assessments could present challenges due to variable transport links and favoured the idea of keeping assessments local. While there was no clear consensus on the ideal setting, with suggestions ranging from GP surgeries during annual health checks (for example those offered to those with learning disabilities), mobile breast screening units, and community or religious venues, to completing assessments privately at home, all women agreed that offering local options would help minimise anticipated burdens and encourage uptake:

Because if somebody’s like oh, that’s just too far, that, just to see if I have a risk, they might not bother. Whereas if it is just local they might be more inclined. (Leanne, low socioeconomic-FG3)

So, they’re thinking somewhere local, because somebody needs to take them, like obviously if it’s in the hospital, her husband needs to take her, so the appointment time needs to be factored in, anyway. So if it’s local, she could actually go by herself. (Taslima via interpreter, South Asian (Muslim)-FG2)

When discussing the different components of the risk assessment (e.g., questionnaire completion and saliva sampling), all groups of women agreed it would be more convenient to complete these at a single time point rather than attending multiple appointments (if in-person visits were required). Again however, there was no clear consensus on the most suitable location for completing these steps to minimise burden, with preferences varying within and across groups. For example, completion at home would reduce the burden of attending an appointment, however, some women felt that in-person interactions with a healthcare professional would be essential. With the potential for in-person appointments in mind, most women described needing maximum flexibility in order to engage, with the risk assessment needing to fit around their busy lives:

I think everybody is available different times, so you could just give it a try and say this Monday morning or evening, and then people will tell you when they will be available. Because some people would say they’ll be available weekends, and some people aren’t, so I think all our times that we’re free vary so I cannot say okay, I’ll be free Monday to Friday as I might not be, or I cannot say weekends, some work weekends. (Maya, low socioeconomic-FG1)

A variety of approaches for inviting women to the risk assessment and supporting questionnaire and saliva sample completion were explored, with differing views on the best strategies to encourage engagement and minimise potential burdens. Suggestions included receiving invitations and completing the questionnaire and saliva sampling by post, questionnaire completion via text messages with mobile links, or through the NHS app. Preferences for these methods varied both within and across groups, as women reflected on the personal advantages and limitations of each approach. For instance, women with long-term anxiety and/or depression highlighted that when experiencing a decline in their mental health, returning a questionnaire and saliva sample kit via post would feel especially burdensome:

My only concern about having it sent to home is about how we’d get it back, because I am absolutely terrible at posting things. Leaving the house barrier, which seems ridiculous when it’s about posting something, it just can escalate into a bigger issue than it ever needs to be. It just happens with anxiety. (Linda, anxiety and/or depression-FG1).

2.3. Supporting cognitive engagement through simplicity and transparency.

Women consistently stressed that presenting risk assessment information in a clear, simple, and accessible way is crucial to reduce cognitive burden and enable understanding. For women with learning disabilities and/or autism, this meant using information videos and easy-read formats with straightforward text and supportive visuals:

I think for everybody, simple text is more simple, it’s better than a complicated text do you understand. So, I think more simple things maybe that’s a good idea. (Sana, learning disabilities and/or autism-FG1)

Similarly, women who were not fluent in English emphasised the need for translated materials and access to interpreters to ensure they could engage fully without additional mental effort. In particular, women from the Roma community highlighted the importance of keeping the pathway straightforward, emphasising that simplicity should take precedence over unnecessary complexity, which can compromise accessibility:

…they will prefer something to be, like, even the test results and things, to be accessible to everybody who can use it to be a simple system of the results or letter or something, but to be simple words, simple system; not something so complicated. Because we try to do things sophisticated but we don’t think that sometimes it can be sophisticated but not accessible. (Summary of discussion via interpreter, Roma-FG2)

Reflecting on the components of the risk assessment, some women recognised the importance of communicating how long the questionnaire would take to complete. Knowing this in advance was seen as essential to help them mentally prepare and manage their time, reducing the likelihood of feeling overwhelmed or disengaged during the process.

3.1. Cultural beliefs and silence surrounding breast cancer.

For most women, conversations about breast cancer were infrequent and rarely part of everyday discussion. Unless the topic became personally relevant, such as through a loved one’s diagnosis or personal symptoms, it was generally not something openly discussed. In several communities, particularly among South Asian (Muslim), Black African/Caribbean and Roma women, breasts were described as a taboo subject, with breast cancer often surrounded by silence and stigma. A diagnosis could sometimes be viewed as an individual’s fault or as something shameful, making open discussion difficult, especially among older generations, who were seen as unlikely to share information or experiences. Some also reflected that in their communities, speaking about illness could be seen as “inviting it in”:

So, probably it’s not necessarily that we are afraid of talking about issues like this, but it’s also in the back of our mind that we are faith people, we believe that our words have got power. We can speak things into existence, so you don’t want to speak something that you don’t want to happen to you. (Jada, low socioeconomic-FG1)

However, many women felt these attitudes were shifting, believing younger women in their communities to be more open and willing to talk about breast health. Furthermore, the majority of women from these communities believed that by attending for a risk assessment, they could set a positive example for other women, showing them that talking about breast health and taking preventative action is not only acceptable, but important.

3.2. Preserving dignity and protecting privacy.

For most women, especially those from South Asian (Muslim) backgrounds as well as those with learning disabilities and/or autism, the gender of the healthcare professional delivering the risk assessment was a significant consideration. For women with learning disabilities and/or autism, the prospect of discussing breast health or undergoing screening with a male healthcare professional was described as ‘uncomfortable’ (Michelle, learning disabilities and/or autism-FG1). Many South Asian (Muslim) women also expressed a strong preference for a female healthcare professional, due to cultural norms around modesty and the body being regarded as private. They also emphasised that if interpreters were required, these should ideally be female to maintain cultural sensitivity. While women understood that having a female healthcare professional for the risk assessment might not always be guaranteed (if delivered in-person), many explained that the possibility of seeing a male healthcare professional for follow-up procedures, for example for a mammogram, would make them feel uncomfortable and could deter them from attending:

Interpreter: For breast cancer, interpreters should be a lady.

Researcher: Okay, what does everyone else think about that?

Nasrin: Yes.

Razia: Yes, it’s very uncomfortable talking to a guy about…

Priyanshi: I wouldn’t talk to a man about this. (South Asian (Muslim)-FG2)

Although women had no significant reservations about completing a risk assessment questionnaire, some, across groups, expressed concerns about providing a saliva sample and the privacy of their DNA data. These concerns primarily centred on uncertainty about how the sample would be used beyond the risk assessment itself, reflecting broader concerns about data being shared or sold for unrelated purposes:

…some people have funny ideas about what can be done with their DNA and where it goes and that sort of thing, so yeah, that might be something that would put some people off. (Leanne, low socioeconomic-FG3)

To address these concerns, women emphasised the need for strong assurances that their genetic data would be used exclusively for the purpose of the risk assessment and not for any secondary reason without explicit consent. One woman also highlighted the importance of choice, suggesting that providing a saliva sample should not be mandatory and women with privacy concerns should still be able to access the service.

4.1. Perceived challenges in supplying accurate risk information.

Linked to generational patterns of communication around illness and cancer diagnoses, women from South Asian (Muslim) and Black African/Caribbean backgrounds raised concerns about their ability to provide accurate family history information. Many noted that, although they may suspect a family history of breast cancer, certainty was often lacking due to older female relatives rarely disclosing their diagnoses. This led to uncertainty about how complete or reliable their family history would be, prompting concerns that their risk assessments might be less accurate:

There is a certain taboo in the family, like, they don’t want to say what illness they’ve got, or if a person passes away, they’re not open about what condition they have passed away with, you know? So, it’s hard to retrieve that information about family members and things like that, it’s difficult. (Nasrin, South Asian (Muslim)-FG2)

In contrast, information about health behaviours, such as smoking, alcohol intake, diet, and exercise were generally seen as easy to provide. However, some women expressed concerns about being judged, which could lead to withholding or underreporting certain behaviours, especially during face-to-face interactions with healthcare professionals. Specifically, one woman with experience of anxiety and depression recalled historically downplaying her alcohol intake due to fear of stigma linked to her mental health:

I would talk about it but I would feel judged. Even though I know no one is judging me. Because with mental health issues and things like that, there’s some things…my history with alcohol and substance misuse, that kind of thing, I’d feel oh gosh, well, if I say how much I used to drink or whatever they might think well, of course, yes, that’s why, you’re making yourself more at risk. So I have in the past fabricated how much I’ve been drinking, and smoking as well. (Abigail, anxiety and/or depression-FG1)

While saliva sampling was generally seen as straightforward, some women expressed concerns about their confidence in completing the process correctly if required to complete at home. To support this, they emphasised the importance of clear, step-by-step guidance, preferably in the form of a video or infographic to help them feel more assured and reduce the likelihood of making mistakes.

4.2. Tailored support to facilitate engagement.

Although there was no clear consensus on the preferred method for completing a breast cancer risk assessment, it was clear that tailored support would be essential to help women feel confident in engaging with the process. Women whose first language was not English emphasised the importance of having access to interpreters throughout, from completing the questionnaire to receiving results:

They could have interpreters ready just to help those that are maybe having difficulties with understanding whilst they’re going through the test (Jada, low socioeconomic-FG1)

Women from the Roma community also highlighted the distinction between being able to speak and understand English conversationally and being able to read and write it fluently. To support access, they emphasised the value of having key sections of information materials, such as the most essential instructions or details translated into Romanian, helping to reduce confusion and build confidence in attending:

…when it’s coming the invitation, if they can put in Romanian a couple of words what it is for, what will benefit and what are you going to find out with that. So they have a reason to understand. They have an understanding of the procedure, like not a very big story, I think in very simple words, but just to say what it’s for, what can benefit and what they need to do, like if they need to prepare or something for it. (Summary of discussion via interpreter, Roma-FG1)

For women with learning disabilities and/or autism, having a trusted carer or support worker present was seen as crucial to reduce barriers and foster a sense of reassurance and confidence in taking part. One woman with learning disabilities highlighted the importance of healthcare professionals being aware of women’s individual needs in advance of the assessment. This was seen as particularly crucial for those who are non-verbal or require additional support, as such an awareness would enable a more tailored approach and help remove barriers to engagement:

Well, they [non-verbal women] have the same feelings as us, it’s just harder for the staff because they’ve got to try and learn them more than what our staff learn us because we can speak, but someone that’s nonverbal, to give them this [the risk assessment] you’ve got to try and learn different signs and try and get [inaudible] sort of thing. (Diana, learning disabilities and/or autism-FG2).

5.1. Risk assessment provides hope and reassurance for the future.

All women viewed the idea of offering breast cancer risk assessments to young women positively and expressed a keen interest in attending if invited. Many highlighted the concerning prevalence of breast cancer in young women and questioned why cervical screening begins at age 25 in the UK, yet breast screening is not offered until age 50. Several women suggested that offering breast screening earlier as a result of risk assessment for those at increased risk would be a reassuring and logical step, helping to detect cancers sooner and reduce worry about developing breast cancer in the future:

Because people younger than 50 get breast cancer all the time, and they could catch it earlier maybe if they were screening people. It’s the same with cervical cancer. If they brought the age limit down they’d catch more people. (Leanne, low socioeconomic-FG3).

As such, women saw the opportunity for a risk assessment as a progressive step toward breast cancer prevention and early detection. Several participants emphasised that “prevention is better than cure” (Clara, FG1, low socioeconomic), suggesting that knowing their risk, particularly if it was high, would provide reassurance that they could access early detection and preventive measures, such as earlier screening or risk-reducing medication. Although some women recognised that receiving risk results might initially cause some worry, especially for those with mental health conditions or learning disabilities and/or autism, they felt the risk assessment would ultimately offer peace of mind, either by confirming a low-risk result or ensuring appropriate monitoring if at increased risk:

I suppose the opportunity to know, the probability of me developing breast cancer in the future and also the follow-on from that if you’re a risk…low risk you’ve got…I mean if you’re high risk the other…the screening and the other things that are also available to confirm or rule out these things, I think that’s good. But also it gives you access to early prevention, perhaps early treatment as well and your confidence, your mental wellbeing is increased. (Asha, anxiety and/or depression-I1)

Some women did, however, raise concerns that being provided with risk information might lead to increased anxiety which could result in excessive self-checking of their breasts. In particular, women with low-term anxiety and/or depression and those with learning disabilities and/or autism expressed that a risk assessment could ‘trigger anxieties’ (Isobel, learning disabilities and/or autism-FG2). Ultimately though, a breast cancer risk assessment for young women was viewed as a reassuring development for the future of breast cancer prevention and early detection.

5.2. Avoidance and emotional disengagement.

When reflecting on why some women in their communities might choose not to attend a breast cancer risk assessment, many women highlighted avoidance and denial as key factors. Specifically, they suggested that some women might feel too afraid to attend, fearing ‘bad’ news, while others described women they knew who would prefer not to know their risk at all. One woman with experience of anxiety suggested that, for individuals with long-term anxiety and/or depression, engagement with the service might depend on their mental state, noting that avoidance would be more likely when feeling less resilient:

I know everything I’ve said and I would attend and everything like that, but if I’m feeling particularly unwell I think it would be too much for me to process in my head. It would potentially tip me over the edge and I wouldn’t be able to cope with that. So I’d prefer to be ignorant of it if I was really poorly. Now, I’m okay right now, I think I would want to know. But someone struggling, I think I maybe wouldn’t. (Abigail, anxiety and/or depression-FG1)

Women from South Asian (Muslim) backgrounds also reflected on why others from their community may not attend, with feelings of denial and beliefs such as ‘it can’t happen to me’ (Razia, via interpreter, South Asian (Muslim)-FG2) and ‘there is nothing wrong with me […] if something’s not broken, why fix it’ (Esha, South Asian (Muslim)-FG1) and lack of family history being discussed as emotional barriers that could contribute to disengagement.

5.3. The emotional weight of being ‘at risk’.

Waiting for risk results was described as a potentially stressful period, with women highlighting that being notified of an increased risk could evoke worry, panic, and fear. In particular, women with long-term anxiety and/or depression identified that an increased risk result would be hard to process and could lead them to ‘spiral’:

…it can be really anxiety inducing, and if you’re already quite anxious you could think oh, no, do they think that I have breast cancer, do I have it, is that certain, and if you don’t have a good support system around you, especially if you’re really struggling with your mental health at the time you might already be quite isolated. So it could trigger you to feel worse and that could potentially for some people spiral them. (Abigail, anxiety and/or depression-FG1)

Women highlighted the need for tailored emotional support for those identified as increased risk, stressing the importance of reassuring them that being at risk is not equivalent to having breast cancer. Some women specifically noted that it should be made clear that an increased risk does not mean a woman will inevitably develop the disease.