Adapting a breast cancer early presentation intervention for Black women: A focus group study with women of Black African and Black Caribbean descent in the United Kingdom

Abstract Objective Black women in the United Kingdom are more likely than White women to be diagnosed with advanced breast cancer and have lower survival rates. We consulted women of Black Caribbean and Black African descent in the United Kingdom on how the Promoting Early Presentation (PEP) booklet and intervention could be adapted for Black women to promote early presentation with breast cancer symptoms. Methods Focus groups with 22 women of Black African and Black Caribbean descent, of whom five had been treated for breast cancer. The participants were recruited from a large UK breast cancer charity and community settings. Data were analysed using Framework Analysis. Results Four themes summarised the participants' views on how the booklet and intervention could be adapted: Justify the focus on Black women, Black people do not talk about cancer, Make interventions inclusive and engaging, and Engage Black communities to deliver interventions. Conclusion Breast cancer behaviour change interventions need to be more inclusive, illustrate how breast cancer symptoms manifest on black skin, and emphasise that breast cancer is curable to increase awareness and reduce cancer fear. Researchers should involve Black communities in the design and delivery of interventions to address appropriately cultural barriers to early presentation.

. While some genetic factors might account for these differences, such as greater risk of breast cancers with less favourable characteristics (Gathani, Reeves, et al., 2021), higher risk of developing the more aggressive triple negative form of breast cancer (Copson et al., 2014;Jack et al., 2009) and higher likelihood of developing breast cancer at a young age (Copson et al., 2014;Jack et al., 2012), a range of patient factors are also likely to contribute to the poorer outcomes for breast cancer among Black women in the United Kingdom. Understanding how these patient factors might be addressed with behavioural change interventions (e.g., promoting timely help-seeking) is arguably a first step in addressing breast cancer inequalities.
First, women of Black African and Black Caribbean descent in the United Kingdom have lower breast cancer awareness than White women (Forbes et al., 2011), and lower knowledge of risk factors for breast cancer Scanlon & Wood, 2005). Furthermore, some Black women consider breast cancer a "White women's disease," and some Black women do not feel that messages promoting breast health or breast screening apply to them (Bamidele et al., 2017;Brown et al., 2017;Jones et al., 2015). Second, Black women in the United Kingdom are less likely to report practising breast cancer awareness compared to White women (Forbes et al., 2011;Scanlon & Wood, 2005). They also report lower uptake of mammographic screening (Bamidele et al., 2017;Jack et al., 2009Jack et al., , 2014Renshaw et al., 2010;Scanlon & Wood, 2005), with main barriers being anxiety over a potential cancer diagnosis, lack of time to attend, and uncertainty over the screening procedure (Bamidele et al., 2017). Third, emotional factors can act as barriers to early presentation with breast cancer symptoms, such as fear of breast cancer (Brown et al., 2017) and fatalistic views about it (Vrinten et al., 2016). A systematic review of barriers to early presentation with breast cancer symptoms among Black women in the United Kingdom found that emotional factors can contribute to delayed presentation: fear of detecting a breast abnormality, fear of cancer treatments, fear of partner abandonment, and cultural factors such as taboos around cancer and perceptions of stigma .

Few interventions aimed at women of Black African and Black
Caribbean descent in the United Kingdom have been developed to date, although some show early promise at increasing awareness of breast cancer and consultations for breast changes (Greenhough et al., 2016). Given the patient factors associated with poorer breast cancer outcomes in Black women, interventions should promote knowledge of symptoms and skills to detect breast changes, and address emotional barriers to symptomatic presentation (Forbes et al., 2011). One breast cancer awareness intervention, Promoting Early Presentation (PEP for short) (Burgess et al., 2008) has the potential for behaviour change as it was developed to address the factors associated with delayed presentation with breast changes, such as low knowledge of symptoms and infrequent self-checking of breasts (Burgess et al., 2008). The PEP intervention is a brief one-to-one script-based communication, accompanied by a booklet with breast cancer awareness messages, delivered by health professionals in a motivational style in one-to-one communication with the patient. It addresses emotional barriers to help-seeking by presenting positively the consequences of breast-checking and help-seeking behaviours (Forster et al., 2014). The PEP intervention has been found to increase knowledge of breast cancer symptoms, confidence in checking breasts, and frequency of breast checking (Campbell et al., 2016;Kaushal et al., 2019).
While the PEP intervention has been successfully delivered in primary care to older women (regardless of ethnicity) (Campbell et al., 2016), we do not know whether women of Black African and Black Caribbean descent would find it acceptable and how it would be best delivered to them. Therefore, we consulted women of Black African and Black Caribbean descent on: whether the PEP booklet was suitable, how it could bring about behaviour change, and how its effects could be optimised through adapting it to the target population and context.

| Design and materials
Four focus groups ranging from two to eight participants were conducted with women of Black Caribbean and Black African descent to elicit views on how the PEP booklet promoting early presentation for breast cancer could be adapted for and delivered to Black women.
The booklet (Looking after your breasts) includes: breast cancer symptoms detailed in text and graphics; guidance on how to check breasts for changes; and positively-framed advice to see the GP promptly if unusual breast changes appear (Forster et al., 2014). The study received a favourable ethical opinion from the University of Surrey Ethics Committee on 10 July 2019 (UEC 2019 058 FHMS).

| Recruitment strategy
We aimed to recruit equal numbers of participants with and without personal experience of breast cancer so as to get a broad range of perspectives on how symptomatic presentation with breast changes should be encouraged. Participants were recruited through purposive sampling and snowballing in London, England, between May and October 2019. Breast cancer survivors were sought with assistance from the charity Breast Cancer Now 1 which, on behalf of the research team, posted the study advert on the charity's patient forum, Breast Cancer Voices. 2 Participants without a history of breast cancer were approached at the housing association Peabody Trust 3 through contacts among the research team. Some participants recruited from Breast Cancer Voices mentioned the study to their friends from the group Global Women of Today, 4 who then volunteered to take part in the research. Women were ineligible if of non-Black African or Black Caribbean descent, or if unable to speak English. One participant, a breast cancer survivor, agreed to provide a patient and public involvement (PPI) perspective in the ensuing data analysis and writing up of the findings.

| Procedure
The focus groups took place in community settings in London (e.g., public library, church). Participants received a participant information sheet prior to the focus groups informing them that the focus group discussion was audio-recorded and their contributions anonymised in the transcription. The focus groups lasted on average 72 min (range: 58 to 90 min) and were facilitated by two of the research team. All focus groups started with a general discussion about how women of Black descent in the United Kingdom should be encouraged to present early with signs of breast cancer, and then participants were asked to make suggestions on how the PEP booklet could be adapted and delivered to Black women. Participants were compensated with vouchers for their travel and time taken to participate in the focus groups.

| Analytic approach
Data were transcribed verbatim, anonymised, and analysed inductively and thematically using Framework Analysis (Ritchie & Spencer, 2002), whereby we followed a five-step process: (1) Familiarisation with the data, (2) identifying a thematic framework, (3) indexing, (4) charting, and (5) mapping and interpretation (Gale et al., 2013;Ritchie & Spencer, 2002). The first author read the transcripts and then developed a coding strategy and a thematic framework, which was applied systematically to the data during the indexing stage. In the final stage, the first author generated a more abstract view of the data as themes were more theoretically conceptualised. Field notes helped contextualise the interpretation of the data. The second author, the PPI representative, checked and approved the interpretation of the data. In the quotes below, we have replaced participants' names with pseudonyms and indicate the participants' age, descent, and whether they had a personal history of breast cancer ("survivors") or not ("no history"). were over the age of 50 and thus eligible for breast cancer screening and of these 100% had participated in screening. The remaining 22.7% (n = 5) were not eligible as under the age of 50, however one of these (20%) had participated in screening because she was a breast cancer survivor. Most participants (55%, n = 12) were educated to degree or higher degree level, six participants (27.2%) were educated to O Levels/GCSE/higher education below degree level, and two participants (9.1%) had no formal qualifications. Almost half were in fulltime employment (46%, n = 10), while a high proportion were retired (32%, n = 7).

| Constructed themes
Four key themes were developed that captured: participants' views on whether Black women should receive targeted interventions, concerns that stigma can make raising cancer awareness difficult in Black communities, suggestions on how the PEP booklet could be adapted for Black women, and reflections that community engagement is necessary to design effective breast cancer interventions for Black women. In Table 1, we provide additional quotes per theme.

| Justify the focus on Black women
At the start of three of the four focus groups some participants challenged the focus on Black women, not least because the facilitators were White. Some argued that all women are at risk of breast cancer and therefore awareness-raising campaigns should target women irrespective of ethnic descent: outcomes. The relatively high educational status of our sample is also a potential limitation and as such our study may not have captured how other barriers to early presentation (e.g., language and transport) could be addressed through interventions. Last but not least, the standard ethnic categories we used in the demographic questionnaire may not have reflected how participants choose to identify themselves; for example, "Black British" could have been included as a category to minimise the sense of feeling "othered" during the research process.

| Implications for research and practice
While further research and community input are needed to design culturally sensitive and inclusive interventions, attention also needs to be paid to the mode and timing of intervention delivery. The current results suggest that women of Black Caribbean or Black African descent would prefer peer-led interventions or interventions delivered in the community. However, future research should also explore the feasibility and acceptability of delivering breast cancer awareness interventions in healthcare settings, which may have the potential of reaching larger numbers of women.

Regarding the inclusion of women of Black Caribbean or Black
African descent in breast cancer research, our approach of using snowballing, known contacts, and charities like Breast Cancer Now showed it was feasible to recruit women from these communities, with and without a history of breast cancer. We found it easy to establish trust with the participants once we explained the purpose of our study and the need to address ethnic inequalities in breast cancer.
Our participants were keen to share their views and experiences and saw our research as worthwhile. Had recruitment proved to be difficult, we would have reached out to other breast cancer charities and community groups serving the needs of people of Black African and Black Caribbean descent.

| Conclusions
The participants in our study viewed the PEP intervention positively and largely agreed that culturally tailored interventions would be acceptable for raising awareness of breast cancer among women of Black Caribbean and Black African descent in the United Kingdom.
While the PEP booklet provided a vehicle for discussion of wider issues of cancer awareness, beliefs, and cultural barriers around cancer, the focus groups indicated that the original PEP intervention may not be entirely suitable for our target intervention groups. Further research and community involvement are needed to adapt existing interventions like the PEP in a culturally sensitive manner with extensive input from women of Black Caribbean and Black African descent.