open access research barriersto early diagnosis of

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Barriers to early diagnosis of symptomatic breast cancer: a qualitative study of Black African, Black Caribbean and White British women living in the UK Claire E L Jones, 1 Jill Maben, 2 Grace Lucas, 3 Elizabeth A Davies, 4 Ruth H Jack, 5 Emma Ream 6 To cite: Jones CEL, Maben J, Lucas G, et al. Barriers to early diagnosis of symptomatic breast cancer: a qualitative study of Black African, Black Caribbean and White British women living in the UK. BMJ Open 2015;5:e006944. doi:10.1136/bmjopen-2014- 006944 Prepublication history for this paper is available online. To view these files please visit the journal online (http://dx.doi.org/10.1136/ bmjopen-2014-006944). Received 17 October 2014 Revised 7 February 2015 Accepted 10 February 2015 For numbered affiliations see end of article. Correspondence to Emma Ream; [email protected] ABSTRACT Objectives: Understanding barriers to early diagnosis of symptomatic breast cancer among Black African, Black Caribbean and White British women in the UK. Design: In-depth qualitative interviews using grounded theory methods to identify themes. Findings validated through focus groups. Participants: 94 women aged 3391 years; 20 Black African, 20 Black Caribbean and 20 White British women diagnosed with symptomatic breast cancer were interviewed. Fourteen Black African and 20 Black Caribbean women with (n=19) and without (n=15) breast cancer participated in six focus groups. Setting: Eight cancer centres/hospital trusts in London (n=5), Somerset (n=1), West Midlands (n=1) and Greater Manchester (n=1) during 20122013. Results: There are important differences and similarities in barriers to early diagnosis of breast cancer between Black African, Black Caribbean and White British women in the UK. Differences were influenced by country of birth, time spent in UK and age. First generation Black African women experienced most barriers and longest delays. Second generation Black Caribbean and White British women were similar and experienced fewest barriers. Absence of pain was a barrier for Black African and Black Caribbean women. Older White British women (70 years) and first generation Black African and Black Caribbean women shared conservative attitudes and taboos about breast awareness. All women viewed themselves at low risk of the disease, and voiced uncertainty over breast awareness and appraising non-lump symptoms. Focus group findings validated and expanded themes identified in interviews. Conclusions: Findings challenged reporting of Black women homogenously in breast cancer research. This can mask distinctions within and between ethnic groups. Current media and health promotion messages need reframing to promote early presentation with breast symptoms. Working with communities and developing culturally appropriate materials may lessen taboos and stigma, raise awareness, increase discussion of breast cancer and promote prompt help- seeking for breast symptoms among women with low cancer awareness. BACKGROUND Breast cancer is the most common cancer in women and the second largest cause of death from cancer in the UK. 1 UK data suggest that despite having lower breast cancer incidence rates than White British women, Black African and Black Caribbean women are more likely to be diagnosed with metastatic disease and have poorer survival outcomes than White British women. 2 This may reect the higher proportion of Black women devel- oping triple negative breast canceran aggressive form of the disease associated with poorer outcomes. 3 A systematic review (18 studies: 11 quantitative, 6 qualitative and 1 mixed method) identied further factors contributing to this disparity between Black and White women: lower symptom and risk factor awareness; stigma, fear and taboo; not making time for breast awareness; fear of con- ventional treatment; mistrust of healthcare professionals; nancial burden of healthcare and inaccessibility of services. 4 There was limited evidence for the inuence of religios- ity on delayed presentation. However, the Strengths and limitations of this study The study was in-depth and used a large sample (n=94) for qualitative research across different geographical areas. The effects of socioeconomic factors and ethni- city were taken into consideration by matching White British women with Black African and Black Caribbean women. Interview findings were further strengthened by their validation using relevant vignettes in focus groups. We have not fully captured the diversity of Black African women. Variation is likely to exist between countries and regions in relation to cancer-related health education, awareness, beliefs, attitudes and behaviours. Jones CEL, et al. BMJ Open 2015;5:e006944. doi:10.1136/bmjopen-2014-006944 1 Open Access Research on May 31, 2022 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2014-006944 on 13 March 2015. Downloaded from

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Page 1: Open Access Research Barriersto early diagnosis of

Barriers to early diagnosis of symptomaticbreast cancer: a qualitative study of BlackAfrican, Black Caribbean andWhiteBritish women living in the UK

Claire E L Jones,1 Jill Maben,2 Grace Lucas,3 Elizabeth A Davies,4

Ruth H Jack,5 Emma Ream6

To cite: Jones CEL, Maben J,Lucas G, et al. Barriers toearly diagnosis of symptomaticbreast cancer: a qualitativestudy of Black African, BlackCaribbean and White Britishwomen living in the UK. BMJOpen 2015;5:e006944.doi:10.1136/bmjopen-2014-006944

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2014-006944).

Received 17 October 2014Revised 7 February 2015Accepted 10 February 2015

For numbered affiliations seeend of article.

Correspondence toEmma Ream;[email protected]

ABSTRACTObjectives: Understanding barriers to early diagnosisof symptomatic breast cancer among Black African,Black Caribbean and White British women in the UK.Design: In-depth qualitative interviews usinggrounded theory methods to identify themes. Findingsvalidated through focus groups.Participants: 94 women aged 33–91 years; 20 BlackAfrican, 20 Black Caribbean and 20 White Britishwomen diagnosed with symptomatic breast cancerwere interviewed. Fourteen Black African and 20 BlackCaribbean women with (n=19) and without (n=15)breast cancer participated in six focus groups.Setting: Eight cancer centres/hospital trusts inLondon (n=5), Somerset (n=1), West Midlands (n=1)and Greater Manchester (n=1) during 2012–2013.Results: There are important differences andsimilarities in barriers to early diagnosis of breastcancer between Black African, Black Caribbean andWhite British women in the UK. Differences wereinfluenced by country of birth, time spent in UK andage. First generation Black African women experiencedmost barriers and longest delays. Second generationBlack Caribbean and White British women were similarand experienced fewest barriers. Absence of pain was abarrier for Black African and Black Caribbean women.Older White British women (≥70 years) and firstgeneration Black African and Black Caribbean womenshared conservative attitudes and taboos about breastawareness. All women viewed themselves at low risk ofthe disease, and voiced uncertainty over breastawareness and appraising non-lump symptoms. Focusgroup findings validated and expanded themesidentified in interviews.Conclusions: Findings challenged reporting of Blackwomen homogenously in breast cancer research. Thiscan mask distinctions within and between ethnicgroups. Current media and health promotion messagesneed reframing to promote early presentation withbreast symptoms. Working with communities anddeveloping culturally appropriate materials may lessentaboos and stigma, raise awareness, increasediscussion of breast cancer and promote prompt help-seeking for breast symptoms among women with lowcancer awareness.

BACKGROUNDBreast cancer is the most common cancer inwomen and the second largest cause of deathfrom cancer in the UK.1 UK data suggest thatdespite having lower breast cancer incidencerates than White British women, BlackAfrican and Black Caribbean women aremore likely to be diagnosed with metastaticdisease and have poorer survival outcomesthan White British women.2 This may reflectthe higher proportion of Black women devel-oping triple negative breast cancer—anaggressive form of the disease associated withpoorer outcomes.3 A systematic review (18studies: 11 quantitative, 6 qualitative and 1mixed method) identified further factorscontributing to this disparity between Blackand White women: lower symptom and riskfactor awareness; stigma, fear and taboo; notmaking time for breast awareness; fear of con-ventional treatment; mistrust of healthcareprofessionals; financial burden of healthcareand inaccessibility of services.4 There waslimited evidence for the influence of religios-ity on delayed presentation. However, the

Strengths and limitations of this study

▪ The study was in-depth and used a large sample(n=94) for qualitative research across differentgeographical areas.

▪ The effects of socioeconomic factors and ethni-city were taken into consideration by matchingWhite British women with Black African andBlack Caribbean women.

▪ Interview findings were further strengthened bytheir validation using relevant vignettes in focusgroups.

▪ We have not fully captured the diversity of BlackAfrican women. Variation is likely to existbetween countries and regions in relation tocancer-related health education, awareness,beliefs, attitudes and behaviours.

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review could not delineate UK perceptions and experi-ences, including regional differences across the UK, dueto lack of UK data. Differences within and between Blackethnic groups, comparisons with White British women,differences according to place of birth and the influenceof age or other factors, could not be defined due topaucity of information about samples and reporting offindings from Black women homogenously. The reviewcould not answer how best to intervene to enhance earlypresentation and diagnosis of symptomatic breast cancerin the UK.The disparity in cancer outcomes between Black and

White women and paucity of in-depth qualitativeresearch exploring barriers to help-seeking for breastcancer among Black women provided the impetus forthis study. Breast awareness entails women knowing howtheir breasts look and feel, recognising what is normalfor them and having confidence to discern unusualchanges should they arise.5 Therefore, breast awarenesshas a key role in early presentation and it is this defin-ition of breast awareness that was adopted for the study.

STUDY AIMSThis was a two phased study that sought to understandbarriers to early diagnosis of symptomatic breast canceramong Black African, Black Caribbean and White Britishwomen. The first phase comprised interviews that aimedto explore, retrospectively, barriers to early presentationand diagnosis with breast cancer. It sought to understandsimilarities and differences both within and betweenethnic groups. The second phase comprised focusgroups conducted to validate and elaborate on findingsfrom the interviews to provide a comprehensive account

of barriers to early diagnosis with breast cancer in BlackAfrican and Black Caribbean women living in the UK.In the UK, a national breast screening programme

invites women aged 50–70 years for screening every3 years. Women also present to healthcare professionals—typically their general practitioner (GP)—if they dis-cover a breast change. It is this symptomatic presentationthat was the focus of this study.

METHODSThe two phased study was undertaken in secondary caresettings. The interview phase took place betweenFebruary 2012 and March 2013. The focus group phasewas conducted between August and October 2013. It wasenvisaged that the planned number of interviews (20 ineach ethnic group) would be sufficient to attain data sat-uration. In-depth qualitative interviews provided detailedunderstanding of barriers to early diagnosis with symp-tomatic breast cancer in Black African and BlackCaribbean women in the UK, both as unique groups,and in comparison with White British women.Subsequent focus groups with Black African and BlackCaribbean women were used to validate interview find-ings using vignettes to provide context and stimulatediscussion.

Sample recruitmentInterview phaseClinical teams in five London cancer centres/hospitaltrusts systematically identified eligible women from clin-ical records and recruited them to interviews conductedface to face (figure 1). Eligible women were (1) BlackAfrican, Black Caribbean or White British (2) over

Figure 1 Recruitment flow chart.

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18 years (3) diagnosed after presenting with symptom-atic primary breast cancer 2–6 months prior to recruit-ment. Women who did not speak English were eligibleto participate but none were identified by clinical teams.Women were ineligible to participate if they presentedvia the National Breast Cancer Screening Programmeand/or had been diagnosed with a local recurrence ofbreast cancer or a second primary. The study researcher(CELJ) used a questionnaire to screen women for eligi-bility and purposively recruit a diverse sample of differ-ing ages, countries of birth, education and times topresentation (78% participation rate). Delayed presenta-tion was defined as a wait of ≥12 weeks in consulting ahealthcare professional about breast cancer symptoms.6

Women were identified as either first or second gener-ation by whether they said they were born outside orinside the UK. Women self-defined their ethnicity. Allwomen gave written informed consent. White Britishwomen were matched to the Black African and BlackCaribbean samples according to age and education,when possible, to enhance comparability. However,White British women tended to be more highly edu-cated than other groups.

Focus group phaseClinical teams in hospital trusts in Somerset, the WestMidlands and Greater Manchester systematically identi-fied eligible women from clinical records and recruiteda convenience sample of women to six focus groups.Women were contacted and recruited to focus groupseither face-to-face or by telephone (figure 1). Eligiblewomen were: (1) Black African or Black Caribbean; (2)over 18 years; (3) diagnosed with breast cancer≥2 months before the conduct of the focus groups; or(4) a family member/friend of someone diagnosed withbreast cancer ≥2 months prior to their conduct; and (5)English speaking.Most patient participants identified one Black African

or Black Caribbean woman each among their family andfriends for the focus groups, that is, snowball sampling.CELJ used a questionnaire to screen women for eligibility(95% participation rate) by asking about their ethnicityand age. First generation and second generation womenwere identified using the same process defined in theinterview phase. Women self-defined their ethnicity. Allwomen gave written informed consent. This led to sixsamples of four to seven women with and without breastcancer being recruited to allow comparison betweenintentions and behaviours. One Black African and oneBlack Caribbean focus group were run in each location.

Data generationInterview phaseCELJ conducted interviews at locations chosen by thewomen; generally their homes. An interview guide wasused to allow women to talk about salient themes in theirown words and at their own pace. Themes exploredincluded: knowledge of cancer and specifically breast

cancer before diagnosis; views about breast awareness; feel-ings on noticing breast symptoms; determining what symp-toms meant; and decisions made about, and experiencesof, help-seeking. Interviews lasted 45–150 min, were audiorecorded and transcribed verbatim. Analysis ran simultan-eously with interviewing. Emerging themes and their inter-relationships were explored in later interviews throughmore focused questioning to clarify understanding.

Focus group phaseFocus groups were undertaken in hospitals by CELJ withgroups of all Black African or Black Caribbean women.Patients and family/friends were in the same focusgroup rather than separated. Discussion was directed bya focus group guide and vignette—a digitally recordedaudio story constructed from salient interview findingsdepicting a Black African or Black Caribbean woman’sdelayed presentation and diagnosis. Two vignettes weredeveloped—one for playing in focus groups with BlackAfrican women and the other for use in focus groupswith Black Caribbean women. Each provided an amal-gamation of women’s specific (according to particularethnic group) experiences narrated either by a BlackAfrican or Black Caribbean actress. They covered all ofthe barriers to noticing breast changes, working outwhat such changes meant, deciding what to do andfinding a way through the healthcare system identifiedfrom the interviews (box 1). Women’s verbatim phraseswere used to enhance authenticity. Vignettes were 4 minlong and during focus group were played initially intheir entirety and then by section—depicting barriers toearly presentation and diagnosis—to allow detailedreflection and discussion. These sections were alsoprinted out and given to women in the groups to help

Box 1 Summary of barriers

1. Noticing changesPerceiving breast cancer information irrelevantLow awareness of risk factors and personal riskLow symptom awarenessBreast awareness not part of cultural normConcern over how to be breast aware

2. Working out what changes meanDifficulty appraising symptomsNot disclosing symptoms to others or disclosing to those withpoor cancer knowledge

3. Deciding what to doFearing a cancer diagnosisWorrying about wasting the doctor’s timeSelf-managing symptoms—rather than seeking helpFocusing on other thingsNot knowing importance of early diagnosis

4. Finding a way through the healthcare systemNot knowing where to goDifficulties booking GP appointmentsFeeling disempoweredDifficulty organising and attending hospital appointments

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maintain focus. For example, one section relating toworking out what changes meant comprised:

When I first discovered something it was a lump but itwasn’t paining me so I wasn’t worried. I also have chil-dren so it would have had to be something stopping medoing the things I usually do, to take time off and see theGP. I then told my husband that I noticed a lump. Hesaid ‘it’s in your imagination. Put your mind off it’ so I lis-tened to him.

Women commented after each section on attitudes,beliefs and behaviours depicted. Focus groups lasted90–120 min, were audio recorded and transcribed verba-tim. A cofacilitator kept field notes and managed theaudio recording equipment.

Data analysisInterview phaseTranscribed interviews were managed using QSR NVivo(V.9). Iterative analysis, following tenets of groundedtheory,7 identified themes and their inter-relationships.CELJ and GL coded transcripts line by line to categoriseand describe data, then developed themes through selectiveand conceptual coding. Constant comparisons and con-trasts enabled evolving themes to be identified and high-lighted divergent perceptions and experiences, which wereexplored in subsequent interviews. The researcher (CELJ),principal investigator (ER) and research team (JM, GL,EAD and RHJ) reviewed emergent findings and supportedanalysis. Additionally, the steering committee discussedemergent themes drawing on their experience, areas ofexpertise and understanding of the literature.

Focus group phaseFocus group transcripts were managed using MicrosoftExcel (2007). Framework analysis integrated interviewand focus group data and enabled their comparison.8

CELJ summarised focus group data into a matrix com-prising core interview themes. New and conflicting find-ings were coded in red and incorporated into theframework.

Steering committee and lay advisory group involvementA multidisciplinary steering committee—comprisingBlack African, Black Caribbean and White Britishwomen with personal experience of breast cancer whowere patient advocates involved in cancer research; ahealthcare professional who was a director of a Blackand Minority Ethnic (BME) cancer charity; a head ofresearch at a breast cancer charity; clinicians and aca-demics (a consultant surgeon and senior lecturer and aconsultant nurse)—advised on the study design, recruit-ment, emerging themes and dissemination of findings.A lay advisory group of Black African and BlackCaribbean women with and without breast cancer (n=8)from a BME cancer charity piloted and advised on thefocus group vignettes.

RESULTSOverview of findingsNinety-four women participated; 20 Black African, 20Black Caribbean and 20 White British women wereinterviewed and 20 Black Caribbean and 14 BlackAfrican women attended focus groups. Patterns in thedata suggested variation in experience by women’sethnic group and generation (first vs second generationmigrants to the UK); the results are presented to reflectthis (tables 1 and 2).There were four fundamental stages leading to diag-

nosis with breast cancer (figure 2). A number of barriersto early presentation and diagnosis operated within each(box 1). Findings are structured according to stages.Self-reported times to presentation, and between pres-

entation and diagnosis, were longest among first gener-ation and, notably, Black African, migrants (table 1).More first generation Black African than other womenwere diagnosed with tumours larger than 5 cm andmore had metastatic disease. Over half (9 out of 16) offirst generation Black African women recruited to thestudy had metastatic disease. This suggests—althoughsome had aggressive triple negative disease—that thisgroup of women may have had their breast change forsome time before presenting to healthcare professionalsand/or had difficulty navigating the diagnostic process.However, first generation Black African women whoworked in healthcare (n=5) were the exception. Theirexposure to the healthcare system—irrespective of occu-pation—appeared linked to early diagnosis. Data satur-ation was reached as envisaged through conduct andanalysis of the 60 interviews. Further, themes identifiedin the interviews were confirmed and illustrated by thefocus group findings. Therefore, focus group data willonly be referred to if they countered or were additionalto the interview findings. There was no discernible dif-ference in the focus group data between help-seekingintentions alluded to by women without breast cancerand actual help-seeking behaviour of women with thedisease.

Noticing changesFive barriers to women noticing breast changes wererevealed and influenced women differently (table 3).

Perceiving breast cancer information as irrelevantWhite British women and second generation BlackCaribbean women appeared receptive to informationabout breast cancer because the disease had personalrelevance for them; many had known women with thedisease. However, most first generation Black Africanwomen, some second generation Black African womenand first generation Black Caribbean women, appearedless receptive towards media/health campaigns aboutcancer generally and specifically breast awareness,before they were diagnosed. They had limited or no per-sonal experience of cancer. Cancer was described astaboo and stigmatised. Further, first generation Black

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Table 1 Characteristics of the 60 women with breast cancer in the interviews

Black African

N=20

Black Caribbean

N=20

All women

(N=60)

First

generation

(n=16)

Second

generation

(n=4)

First

generation

(n=9)

Second

generation

(n=11)

White

British

N=20

(n=20)

Age years; mean (range) 52 (30–91) 47 (30–79) 45 (43–46) 65 (47–91) 45 (41–57) 55 (31–83)

Religion

Christian 46 15 4 9 9 9

No religion 11 0 0 0 0 11

Other (Muslim and

Buddhist)

3 1 0 0 2 0

Marital status

Single 11 4 0 0 5 2

Cohabiting 9 1 1 1 1 5

Married 23 6 3 3 4 7

Divorced/separated/

widowed

17 5 0 5 1 6

Employment (at time of interview)

Employed full-time 25 3 3 3 8 8

Employed part-time 10 3 1 2 0 4

Unemployed 7 5 0 0 1 1

Full-time homemaker 3 2 0 0 0 1

Other (self-employed/

student)

5 1 0 0 2 2

Retired 10 2 0 4 0 4

Education

No formal education or

GCSE/O Level/CSE

17 4 0 4 3 6

A-Levels or equivalent 21 10 0 3 5 3

Degree or equivalent 16 1 4 1 3 7

Other 6 1 0 1 0 4

Time to presentation

Self-reported time between noticing a symptom and presenting to a HCP

<3 months 46 11 4 5 9 17

>3 months 14 5 0 4 2 3

Self-reported system time between presenting to HCP and being given results

<3 months 53 12 4 7 10 20

>3 months 7 4 0 2 1 0

Breast cancer type

Ductal carcinoma in situ 25 6 2 4 5 8

Invasive (or infiltrating)

ductal carcinoma

25 7 2 3 4 9

Invasive (or infiltrating)

lobular carcinoma

2 0 0 0 0 2

Inflammatory breast

cancer

1 0 0 0 0 1

Triple-negative breast

cancer

7 3 0 2 2 0

Staging (TNM)*

T1 36 5 3 4 7 17

T2 14 3 1 3 4 3

T3 7 5 0 2 0 0

T4 3 3 0 0 0 0

N0 35 6 3 4 7 15

N1 16 3 1 4 3 5

N2 4 2 0 1 1 0

N3 5 5 0 0 0 0

Continued

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African women were more familiar with other diseases,including HIV/AIDS, which were more prevalent andfeatured prominently in public health campaigns in thecountries these women migrated from. Consequently,cancer often ‘had no meaning’ for Black African migrantsunless they knew someone with the disease.

Low awareness of risk factors and personal riskWhite British women and second generation BlackCaribbean women seemed familiar with breast cancerbut often believed they were not at risk of the disease asthey had no family history of it. Younger women in thesegroups appeared less breast aware than women agedover 50—they rightly believed they had limited risk ofdeveloping the disease due to their age and thereforechecked their breasts infrequently. White British partici-pants aged over 70 years often believed older womencould not develop breast cancer. Most Black African andfirst generation Black Caribbean women irrespective ofage generally thought they were not at risk. They alsobelieved breast cancer was a ‘White woman’s disease’ andassumed that having no family history, feeling healthy,being young and having small breasts made it impossiblefor them to develop breast cancer. Some associatednegative cervical screening results with having ‘littlechance of getting cancer’ and so were not breast aware.Exceptions were women who knew people with cancergenerally and who worked in healthcare.

Low symptom awarenessWhite British and second generation Black Caribbeanwomen appeared to have greatest knowledge of breastcancer symptoms and typically determined quickly ‘anydifference’ in their breasts. However, perceived ‘over-emphasis on lumps’ in the media meant that some did notrealise the significance of non-lump symptoms. Likewise,many first generation Black Caribbean and second gen-eration Black African women were unaware of non-lumpsymptoms. In comparison, first generation Black Africanwomen had poor—if any—knowledge of breast cancer

symptoms unless they had watched television health pro-grammes where breast cancer had featured.

Breast awareness not part of cultural normWhite British women and second generation BlackCaribbean women generally believed breast awarenesswas important for health. However, some White Britishparticipants aged over 70 years reported different views,reporting feeling awkward touching their bodies orbelieved being breast aware was ‘looking for trouble’. Inthis respect they appeared similar to Black Africanwomen and first generation Black Caribbean women.Additionally, first generation Black African womenbelieved feeling breasts for changes might cause breastcancer.

Concern over how to be breast awareWomen from all ethnic groups were concerned overactions to take in being breast aware. Many believed itinvolved a formal checking procedure and felt unconfi-dent regarding how their breasts should feel.

Working out what changes meanTwo barriers to women interpreting symptoms as con-cerning were revealed and were experienced differentlyby ethnic group and women’s time spent in the UK(table 4).

Difficulty appraising symptomsWomen across the sample who detected subtle changes(eg, ‘slight hardness’) reported difficulties determiningtheir importance. Misattribution of non-lump symptoms(to menopause, menstrual cycle, age, stress and breastinjury) contributed to delay in help-seeking. In WhiteBritish and second generation Black Caribbean women,this appeared more likely when non-lump symptomsfailed to match their mental images of them. In com-parison, first generation Black African and BlackCaribbean women had low awareness of non-lump symp-toms. Additionally, Black Caribbean women and a

Table 1 Continued

Black African

N=20

Black Caribbean

N=20

All women

(N=60)

First

generation

(n=16)

Second

generation

(n=4)

First

generation

(n=9)

Second

generation

(n=11)

White

British

N=20

(n=20)

M0 48 7 4 7 10 20

M1 12 9 0 2 1 0

Tumour size*

≤2 cm 36 5 3 4 7 17

>2 cm <5 cm 14 3 1 3 4 3

≥5 cm 10 8 0 2 0 0

*TNM breast cancer staging and tumour size ranges taken from Cancer Research UK 2012.GCSE, General Certificate of Secondary Education; HCP, healthcare professional; N=number of participants; n=number of participantsincluded in group.

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minority of White British women with lumpy breastsdescribed difficulties differentiating between concerningand ‘normal ’ lumps.All women reported that they had been attentive to

worsening and persistent symptoms and those they per-ceived as ‘not normal ’ or having no explanation.However, first generation Black African and Black

Caribbean women seemed most likely to tolerate orignore symptoms if they were not bothersome and didnot affect daily functioning. Most Black African andBlack Caribbean women assumed cancer would bepainful. Those who noticed a painless lump often tooklonger to present compared to women who felt asso-ciated pain.

Table 2 Characteristics of the 34 women with and without breast cancer in the focus groups

All women

(N=34)

Black African

N=14

Black Caribbean

N=20

First generation

(n =12)

Second

generation (n=2)

First

generation

(n=5)

Second

generation (n=15)

Age (years; mean (range) 55 (33–68) 43 (40–55) 40 (39–40) 65 (45–68) 50 (33–60)

Religion

Christian 30 11 2 4 13

No religion 1 0 0 0 1

Other (Muslim and

Buddhist)

3 1 0 1 1

Marital status

Single 6 2 1 0 3

Cohabiting 11 5 1 0 5

Married 11 3 0 3 5

Divorced/separated/

widowed

6 2 0 2 2

Employment (at time of interview)

Employed full-time 14 5 2 0 7

Employed part-time 8 3 0 2 3

Unemployed 2 1 0 0 1

Full-time homemaker 2 1 0 0 1

Other (self-employed/

student)

2 0 0 1 1

Retired 6 2 0 2 2

Education

No formal education or

GCSE/O Level/CSE

3 2 0 1 0

A-Levels or equivalent 15 6 0 3 6

Degree or equivalent 15 4 2 1 8

Other 1 0 0 0 1

Number of women with and without breast cancer

With breast cancer 19 6 2 5 6

Without breast cancer 15 6 0 3 6

Time to presentation for women with breast cancer

Self-reported time between noticing a symptom and presenting to a HCP

<3 months 14 3 2 3 6

>3 months 5 3 0 2 0

Self-reported system time between presenting to HCP and being given results

<3 months 16 3 2 5 6

>3 months 3 3 0 0 0

GCSE, General Certificate of Secondary Education; HCP, healthcare professional; N=number of participants; n= number of participantsincluded in group.

Figure 2 Journey to diagnosis with symptomatic breast cancer in Black African, Black Caribbean and White British women.

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Table

3Noticingchangesbyethnic

groupandgeneration

BA

BC

WB

Noticingchanges

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

Perceivingbreastcancerinform

ationirrelevant

Operatingasabarrier?

Yes

No

Yes

No

No

“InAfrica,apartfrom

HIV,

youdon’treally

haveit.HIV

istalkedabouteverywhere

all

overtheplacesoyouwill

readitandknow

thatit’s

affectingpeople…Ihave

family

affectedbyitwhereas

withcanceritwasn’tthere

for

meto

thinkordoanything

about.”(21BA,37years,

1day)

“I’m

justinquisitivebecause

somethingsare

hereditary.

Cancer,myfatherhaditso

Iwasvery

inquisitiveto

checkthingsout.Some

years

ago,Icheckedonthe

internet.Ilistenedto

the

advicethatsays‘Ihave

cancerbutIwascured’.

There’sthis

guyontelly

and

oneoftheblokespassed

on,orhelivedonandall

them

things.So,Idecided

toGoogle

itandIreadalot

aboutit.”(47BA,43years,

1day)

“Iknew

nothingabout

cancer.Iknow

people

havecancerbutitwasn’t

aroundme.AndIthinkif

it’s

notaroundmeIdon’t

needto

know

anything

aboutitreally…

Ididn’t

payattentionto

it

becauseitdidn’taffect

me.Ididn’tneedto

know

anythingaboutit.”(11BC,

47years,1year)

“Ithinktheawareness

campaignsare

really

goodbecauseitmakes

youstopandthinkif

somethingmightrelate

to

you…Andevenfor

myself,whentheywere

talkingaboutwomen

checkingtheirbreasts,I

thinkthatwasreally

goodbecauseIknew

whatto

doandhow

to

look.”(13BC,48years,

1week)

“There’s

somuch

awarenessnow.Yousee

itonthenewsandin

the

papers.Youknow

people

who’vehadit.I’dread

aboutcancerandI’d

seenthingsin

magazines

andthingslikethatittold

youbitsandpieces,

Imeanovertheyears

so

althoughyoudidn’tthink

you’d

getcanceryou

knew

itwassomething

youneededto

know

aboutjustin

case.”

(31WB,45years,

1–2weeks)

Low

awarenessofriskfactors

andpersonalrisk

Operatingasabarrier?

Yes

Yes

Yes

No

No

“Ineverchecked.Inever

knew

somethinglikethis

could

happento

me.My

mindnevergothere

because

Ididn’tknow

Icould

get

cancer.”(3BA,30years,

1year)

“Ladieswhohaveitin

their

family

they’remore

motivatedto

dothe

checkingbutIhaveno

family

history…

Iknew

Blackscould

getitbutnot

asmuchastheWhites…

I

wasn’taware

thatladiesof

myagecould

haveitsoI

didn’tthinkIneededto

check.”(46BA,46years,

3weeks)

“Ithoughtyouhaveto

haveahistory

inyour

family

ofcancerto

actually

havecancer.

Ididn’tknow

that,you

understandme,soif

somebodyfrom

myethnic

backgroundcomeoutand

say‘this

iswhatIwent

through’…

Imighthave

checkedmyself.”(11BC,

47years,1year)

Very

rarely

womenmy

agegetitbutyouknow,

there’s

apossibility

and

myfriendhadcancer

anditwassobig…I

thoughtIshould

check

myself.”(5BC,46years,

2weeks)

“ImeanIknow

it’s

very

commonsostatistically

in

awayyouare

quitelikely

togetbreastcancer…

I

checkedbutnotasoften

asIshould…

becauseit’s

justnotin

thefamily

and

becauseI’m

young”

(33WB,33years,

6weeks)

Low

symptom

awareness

Operatingasabarrier?

Yes

Yes

Yes

Yes

No

“Iknow

nothingaboutbreast

cancer.Iheard

aboutlumps

butwhatis

lump?”(12BA,

43years,12weeks)

“I’m

aware

thatyoushould

beaware

ofthings…theydo

saycheckforlumpsandI

knew

[about]ifthere’s

a

changemaybethat’s

important.Butwhatdoes

“Ionly

knewaboutlumps

butanythingelseIreally

wasn’ tsure

atall.”(23BC,

59years,2years)

“Itriedto

checkbutI

didn’tknow

whatIwas

really

checkingforand

thatconcernedme…I’ve

gotquitelumpybreasts

anyway,soitwasreally

“Thenurseshewent

througheverything,what

youshould

doandwhat

youshould

lookoutfor

soIliterally

justthought

‘God,that’sreally

Continued

8 Jones CEL, et al. BMJ Open 2015;5:e006944. doi:10.1136/bmjopen-2014-006944

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3Co

ntinued

BA

BC

WB

Noticingchanges

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

that[a

change]mean?I’m

notsure

whatitmeanssoI

didn’tcheck.”(26BA,

45years,1week)

hard

todetectifthere

wasanyunusuallumps.”

(48BC,48years,

9weeks)

important’andIalways

checkedmybreasts

fora

change.”(54WB,

31years,4days)

Breastawarenessnotpartofculturalnorm

Operatingasabarrier?

Yes

Yes

Yes

No

No*

“Idon’tdochecks.Ididn’t

grow

upwiththis

culture

that

saysyoumustcheckyour

breasts

asalady…

soI

guessIdidn’t…

really

notice,

yes.”(20BA,39years,

11months)

“I’m

notbeingfunnybutwe

don’treally

check.It’s

not

somethingwedoandifwe

did

we’d

allbeaware

alot

soonerwouldn’twe.”(46BA,

46years,3weeks)

“Idon’tliketo

playwith

mybreasts

althoughthey

said

youmustalways

checkyourbreasts.I

don’ttouchmybreasts

at

all.

Andthat’show

Ican’t

tellyou,how

longit’s

there,ifIwasdoingthat

maybeIwould

finditout

abitearlier.”(2BC,

84years,1day)

“It’scompletely

norm

alto

feelyourownbreasts…

it’s

partoflookingafter

youroverallhealth.

(13BC,48years,1week)

“It’sjustnorm

alisn’tit?

It’s

justsensible

tocheck

becauseyou’rehearing

aboutbreastcancerall

thetime…

Ijusthavea

quickcheckevery

so

oftenwhenIhavea

showerordryingmyself.”

(60WB,65years,

6weeks)

Concern

overhow

tobebreastaware

Operatingasabarrier?

Yes

Yes

Yes

Forsome

Forsome

“How

doyoucheck?Ihear

aboutthis

ontelevisiononce

andthatladiesmustcheck

themselvesbutnoone

showsyouhowandforme,I

think,it’s

hard

ifyoudon’t

know

how

todoit.”(17BA,

37years,2weeks)

“Ifyoudon’tknow

whatto

dowhat’sthepoint?

Ifyou

getitwronghow

doyou

know

whatyou’refeeling

mightbebad?(26BA,

45years,1week)

“IjustthoughtIdon’t

really

know

ifI’m

doing

anythingrightandsoI

wascertainlyad-hocwith

mycheckingbecauseI

wasworriedaboutgetting

itwrong.”(32BC,

50years,3days)

“Iwasalwaysabit

dubiousabouthow

Iwas

meantto

check…you

hearaboutthatyouhave

tolayflatorhold

your

handflatandmove

roundin

aparticular

motion.Ijustfeltthere

wastoomuchroom

for

error.”(16BC,57years,

3months)

“Iknew

Ishould

check,

we’retold

tocheck.ButI

wasn’tsure

how

toand

soIkeptforgettingto

do

itorputtingitoffreally.”

(28WB,49years,more

than3monthsbut

uncertain

how

long)

*Unlessover70years

ofage.

BA,BlackAfrican;BC,BlackCaribbean;WB,WhiteBritish.

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Table

4Workingoutwhatchangesmeanbyethnic

groupandgeneration

BA

BC

WB

Workingoutwhat

changesmean

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

Difficultyappraisingsymptoms

Operatingasabarrier?

Yes

No

Forsome

Forsome

Forsome

“Itwasn’tdisturbingme

thenitstartedpaining

me,thenitstarted

growingbiggerbutI

didn’tgo…

Idon’tknow

if

it’s

cancerorinfectionor

somethingbecauseI

don’tknowanything

aboutcancer.”(19BA,

43years,6months)

“Mymother’sside,wehad

cancerandmyfatherhad

ittoo.I’m

inquisitivesoI

knew

lumpscanbe

cancer…

so,whenIfeltthe

lumpin

mybreastIsaid,

“Whatisthis?”AndI

movedstraightaway.

Ididn’twait.”(47BA,

43years,1day)

“Ithoughtwellit’s

not

gettingbiggerandit

doesn’thurtsocan’tbe

anythingreally

serious.”

(16BC,57years,

3months)

“Ifeltastabbingpain

andit

hurtabitandIthought‘oh!’

Anythinggoeswrongthat’s

notnorm

alIalwaysgoto

the

doctor.”(4BC,50years,

1week)

“WhatIfirstnoticedit,

there

wasn’teveralump…

Itwasliterally

monthsand

monthsandmonthsthatI

noticedthatthere

wasa

difference…

andalsoI’m

approachingmenopause

aswellsoIdidn’treally

know.”(28WB,49years,

more

than3monthsbut

uncertain

how

long)

Notdisclosingsymptomsto

anotherpersonordisclosingto

someonewithpoorcancerknowledge

Operatingasabarrier?

Yes

No

Forsome

No

No

“WhenItold

him

[her

husband]hesayIshould

relaxandnotstress

myselftoomuch…

wesay

it’s

acold.Becauseof

thatIhadto

buyan

electric

blanketto

useit

tosleep,thinkingthat

maybecold

hadentered

mylungs.Wethoughtit’s

justaordinary

or

somethinglikethat.”

(3BA,firstgeneration,

30years,1year)

“Itold

myhusband,the

family.Theywere

very

sympathetic,‘don’tworry,

goandgetitcheckedout

andseewhattheysay,

you’vegotto

getit

checkedout’.Thatwasthe

main

instructionandthen

you’llknow…

itdoeshave

aninfluencebecauseyou

havesupport.”(26BA,

secondgeneration,

45years,1week)

“Ididn’ttellanyoneelse

becauseI’m

only

concernedwithmedical

opinionsandIdidn’twant

anyoneto

worryuntilI

knew

whatIwasdealing

with.”(32BC,first

generation,50years,

3days)

“Itold

myhusbandaboutit

becauseIwantedhis

support

butIdidn’ttellmymum

or

friendsbecausethey’d

start

worrying…

Ididn’twantthem

toworryunnecessarily.”

(48BC,secondgeneration,

48years,9weeks)

“Ilethim

feelitandhe

said

tomeyesthere’s

definitely

alumpthere.

Ididn’twantto

thinkIwas

goingmadanditwasjust

methatcould

feelitbutno

hecould

feelitaswelland

mymum

hadafeeland

shecould

feelit…

Ihad

decidedto

goto

myGP

anywaythough.”(57WB,

37years,3days)

BA,BlackAfrican;BC,BlackCaribbean;GP,generalpractitioner;WB,WhiteBritish.

10 Jones CEL, et al. BMJ Open 2015;5:e006944. doi:10.1136/bmjopen-2014-006944

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Not disclosing symptoms to others or disclosing to thosewith poor cancer knowledgeDisclosing symptoms appeared to promote prompt helpseeking for breast changes. However, who women dis-closed to was equally important. White British womenand second generation Black Caribbean and BlackAfrican women were encouraged by family and friendsto seek help. However, first generation Black Africanand Black Caribbean women reported they were notalways encouraged to do so, which contributed to delay.Exceptions were women who disclosed to family orfriends who either worked in healthcare or had them-selves experienced a breast lump.

Deciding what to doTable 5 summarises factors influencing women’s help-seeking behaviours on noticing breast changes.

Fearing a cancer diagnosisFear appeared to influence help seeking for breastchanges in different ways. Wanting to ‘rule cancer out ’rather than ‘worrying unnecessarily’ motivated most WhiteBritish, Black Caribbean and second generation BlackAfrican women to seek help. However, fear and ‘notwanting to face the possibility of breast cancer ’ contributed todelay among first generation Black African womenwhose family and friends had died from the disease.Similarly, a minority of Black Caribbean and WhiteBritish women said they delayed seeking help becausethey believed they definitely had cancer and wereanxious about how advanced it might be.

Worrying about wasting doctors’ timeIrrespective of their ethnicity, women generally soughthelp quickly if they felt their GP or healthcare profes-sional had been sympathetic at previous presentationswith breast changes and they had been satisfied withtheir care. First generation and second generation BlackCaribbean and first generation Black African womenseemed most worried about wasting their GP’s time, par-ticularly when they perceived their GP had been dismis-sive or unsympathetic about previous health issuesincluding breast changes. A minority of White Britishand second generation Black Caribbean women whohad previously been diagnosed with benign breastdisease were concerned about wasting their doctors’time and typically did not seek help with any urgency.Second generation Black African women did not reportconcern over wasting doctors’ time.

Self-managing symptoms rather than seeking helpMost White British and second generation BlackCaribbean and Black African women monitored theirsymptoms for a short period (range 1 day-6 weeks)before seeking help. However, self-treating symptomswith conventional medicines (eg, painkillers) contribu-ted to some first generation Black Caribbean womendelaying presentation (range 1 day-2 years). Three first

generation Black African women used prayer and alter-native medicine before seeking medical help (range2 weeks-1 year).

Focusing on other thingsCompeting priorities (eg, work and childcare commit-ments) contributed to help-seeking delay among aminority of women. Some White British women, firstgeneration and second generation Black Caribbeanwomen and a minority of first generation Black Africanwoman reported delay in presenting with what theybelieved was breast cancer because of difficult life events(eg, depression, relationship breakdown and redun-dancy). However, a minority of first generation BlackAfrican and Black Caribbean women with delayed pres-entation appeared to genuinely believe their symptomswere unimportant within their very busy lives.

Not knowing importance of early diagnosisMost White British and Black Caribbean women voicedthe importance of early diagnosis for cancer survivaland this motivated them to seek help. Conversely, mostfirst generation Black African women were unaware ofthe importance of early diagnosis. Some also believedcancer remained within the breast rather thanmetastasising.

Finding a way through the healthcare systemFour barriers to women travelling effectively through thehealthcare system were revealed in the data; again, somewere experienced differently across the sample (table 6).

Not knowing where to goAll White British, Black Caribbean and second generationBlack African women presented to a GP or walk-in clinic.However, many first generation Black African women pre-sented at accident and emergency (A&E) departmentsand one waited to be contacted by the National HealthService (NHS) breast screening programme because theywere unsure where to present with breast changes. All butone of the Black African women presenting to A&E weretold by staff to contact their GP. The exception was awoman with metastatic disease who was admitted.However, some did not act quickly on this instruction asthey did not believe it was important to do so.

Difficulty booking GP appointmentsAll women expressed difficulty seeing their GP, report-ing: challenges in booking appointments; discomfortwith disclosing symptoms to receptionists; inconvenientsurgery opening hours; and limited emergency appoint-ments. Most overcame these issues and were seenrapidly. Exceptions were women in senior/professionalroles who described difficulty taking time off work, andfirst generation Black African women with work andchildcare responsibilities (eg, agency work, childcarecosts and not having a partner to look after children).Black African and Black Caribbean women in focus

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Table

5Decidingwhatto

dobyethnic

groupandgeneration

BA

BC

WB

Decidingwhatto

do

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

Fearingacancerdiagnosis

Operatingasabarrier?

Yes

No

Forsome

Forsome

Forsome

“SoIknow

cancerkillsyou

becausethewomandied.

Shedied.Andbefore

she

diedshewassoskinny,and

shehadsore,andthe

tumourwasbigger,you

know,itwashorrible

experience.Isaw

itwithmy

eyes.SowhenIhaditI

heard

aboutcancersaid

that

istheend.Iwaslikescared,

youknow,likeifIgoto

hospitaltheymighttellme

it’s

cancer.”(6BA,38years,

4months)

“Ithink[otherwomen]

alwayshavethat

questionatthebackof

theirmind,‘W

hatifthey

findsomething?I’m

frightened,I’m

terrified!’

Butformethat’swhat

mademewantgo.

Iwantedto

knowas

there’s

nopointworrying

aboutit.”(46BA,

46years,3weeks)

“Iwasreally

worriedand

panickyandgoing‘ohmy

god,ohmygod’andI

knew

itcould

becancer

soIknew

Ihadto

findout

incaseitwassoIcould

starttreatm

entrightaway.”

(7BC,firstgeneration,

68years,1day)

“Itwasjustto

kindofto

rule

itoutifit’s

anything

becauseyoucan’tsiton

cancerbecauseit’s

more

stressfulworryingabout

something…

plus

treatm

ents

hadworked

formum

andother

people

Iknew

sowhy

notforme”(5BC,

46years,2weeks)

“Ishitmyselfliterally,itwas

suchashockbecause

Iknew

whatitcould

mean.

Idon’tcry

oftenandIdon’t

getin

aflapbutIdid

this

time.Iknew

somethinghad

tobedoneaboutthis

like

now…Iwascryingand

everything.”(27WB,

52years,1week)

Worryingaboutwastingthedoctor’stime

Operatingasabarrier?

Yes

No

Yes

Forsome

Forsome

OneofthereasonswhyI

wasreluctantto

gowhenI

saw

thechangesin

my

breastwasbecause[theGP]

told

meayearbefore

that

basically,‘whatdoyouwant

meto

do?Cutyourbreasts

off?’Ireaditasyou’reabit

ofahystericalwomanora

hypochondriac…itwaslike

‘don’tkeeppesteringus’ .”

(53BA,51years,2years)

“Ithought‘this

looksa

bitodd,itfeels

abit

different.’…ButIknew

it

wasirregularanditfelt

differentto

othercysts.

MyGPneededto

see

it.”(46BA,46years,

3weeks)

“Iwould

liethere

and

checkandI’m

thinking,

‘shallIgoto

thedoctor?’

AndI’m

thinking‘nahI’m

notgoingto

waste

the

doctor’stime’.Youknow

it’s

nothing,and

everything.Soit’s

notthat

Ihadabadexperience

thatIthinkthat–

noit’s

just

formethinkingthatIam

goingto

waste

the

doctor’stime.”(11BC,

47years,1year)

“I’d

hadlumpsbefore

andtheGPand

everyonewasvery

nice

buttheysaid

mostlumps

turn

outto

bebenign.So

anywayIguesswhenI

foundthis

atfirstIjust

thoughtitwasnothingto

worryabout.Iwantedto

getitremovedbutit

wasn’turgentto

doit”

(16BC,57years,

3months)

“Iwould

havegonesooner

butI’dhadalumpin

my

breastbefore.I’drushed

straightto

myGPthenandit

turnedoutto

benothingso

thistimearoundIwasn’tso

quickto

rush.I’m

nota

hypochondriac.”(60WB,

65years,6weeks)

Self-m

anagingsymptoms

Operatingasabarrier?

Forsome

No

Forsome

No

No

“Icould

rememberyears

ago

inNigeriamyAuntiegave

birth

andthebreastmilk

wasn’tcomingout,youhad

totakeastone,then[press]

sothatitgosoft,sothatthe

“OhIwantedto

beseen.

Iknew

this

neededto

be

seenwhat’sthepointin

takingtablets

becauseit

wasn’thurtingsobad…

I

did

praybutto

giveme

“Iwastakingparacetamol

forthepain

onceitstarted

hurtingandibruprofento

seeifthatwould

makethe

lumpgodown,in

caseit

“Thingsdon’tgetbetter

ontheirowndothey?It’s

sillyto

thinkthatyoucan

treatthis

athome…I

knew

itwasalumpthat

neededto

beremoved

“Iknew

deepdown

somethingwasn’tright…

and

thatitwasn’tnorm

al…

it

wasn’tgoingto

goonits

own,there

wasnothingI

could

doaboutitpersonally

Continued

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5Co

ntinued

BA

BC

WB

Decidingwhatto

do

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

breastmilk

willcomeout.I

wasdoingthesamethingto

myselfwhenmybreastwas

hard.”(17BA,first

generation,37years,

2weeks)

thestrength

Ineededto

ringmyGP.”(47BA,

secondgeneration,

43years,3weeks)

would

goaway.”(23BC,

59years,2years)

onewayoranotherbya

doctor.(4BC,second

generation,50years,

1week)

andIjustknew

Ihadto

see

myGPstraightaway.”

(54WB,31years,4days)

Focusingonotherthings

Operatingasabarrier?

Forsome

No

Forsome

No

No

“Ineededto

bestrongformy

family

becausemydad,he

diedearlierin

theyearandit

wasvery

difficult,very

hard

formeallthistime.Ican’t

eventhinkaboutanything

else…Ihadamiscarriage

andIthinkmaybethis

is

anotherreasonwhyIdon’t

goto

myGP.DoyouthinkI

did

thewrongthing?“(20BA,

39years,11months)

“Nothingis

more

importantthanmy

health.Iknew

Iwanted

togoandseetheGP

straightaway.Idropped

everything.”(46BA,

46years,3weeks)

“I’d

beenreally

busyat

work,itwassohectic

leadingupto

mesaying

‘right,yesIbetterbook

andseemyGP.’I’dalso

hadto

organiseabig

birthdayformy

mother-in-law

andgetting

allthefamily

toflyoutfor

it.Justhectic!(15BC,

45years,6months)

“Ijuststartedthrowing

myselfinto

this

volunteer

work

I’dbeendoing

sincealltheproblems

withmysonandhis

girlfriend.Soitwasa

wayofcarryingonas

norm

al,focusingon

otherstuffasawayof

avoidingseeingmyGP

maybe(8BC,53years,

3months)

“I’m

asingle

mum

soIwas

doingallthatonmyownand

thenaroundthattimeIwas

stillfreelancingaswell.

I’m

a

musicianandwewere

travellingaroundEuropesoI

justputthelumpto

theback

ofmymind.”(39WB,

48years,3months)

Notknowingim

portanceofearlydiagnosis

Operatingasabarrier?

Yes

No

No

No

No

“Idon’tevenknow

thatit

[cancer]canspreadaround;

Idon’teventhinkthatitcan

spreadround…

it’s

justa

lump.”(6BA,38years,

4months)

“Ifit’ s

caughtearlyyour

chancesare

good…

it

mayhavebeenata

differentstageormore

advancedoraggressive

ifyoudon’tlive…itall

makesadifferenceif

yougoearlier.”(25BA,

44years,2weeks)

“Iknow

youshould

see

yourGPassoonasyou

noticesomethingdifferent

thenit’s

notgoingto

geta

chanceto

spreadassuch,

thesoonerit[treatm

ent]

happensto

me,itwould

putmymindatrest.”

(7BC,68years,1day)

“Youshould

goearly,

becausetheearlieryou

go;theycantreatit.But

thelateryougo,you

eitherhaveyourbreasts

removedoryouknow

you’resick…itspreadsto

therestofyourbody.”

(9BC,50years,1day)

“Somanypeople

survive

now

becausetheyfind

cancerearliernoweitherif

theygoscreeningorlike

how

Idid

whenitwasalittle

lump.”(58WB,41years,

3days)

BA,BlackAfrican;BC,BlackCaribbean;GP,generalpractitioner;WB,WhiteBritish.

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6Findingawaythroughthehealthcare

system

byethnic

groupandgeneration

BA

BC

WB

Findingawaythrough

thehealthcare

system

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

Notknowingwhere

togo

Operatingasbarrier?

Yes

No

No

No

No

“Ikeptonfeelingthere

is

somethingthere

andasit

wentonIwasreally,really

scaredbecauseIcould

feel

itandIwasthinkingwhat

doIdobecauseIalwaysgo

formammogram,andI

didn’tknow

ifIshould

wait

tobecalled,soIdidn’t

know

where

togoorto

start.IthoughtshallIgoto

myGPorshallIgoto

the

hospital?”(22BA,first

generation,64years,

1.5

years)

“Iknew

togoto

myGP

becauseIjustdo…

it’s

the

firstplaceyougofor

problemswithyourhealth

unlessit’s

seriousoryou

breaksomethingandyou

needto

getthetreatm

ent

there

andthen.”(25BA,

secondgeneration,

44years,2weeks)

“Ihaveregular

appointm

ents

anywayfor

otherthingssoIalways

askmyGPaboutanything

first.”(7BC,first

generation,68years,

1day)

“Iwentto

myGPbecause

that’swhatI’vealways

doneandthat’show

you

getreferredforfurther

tests…

I’dhadcysts

aspiratedbefore

andthis

wasnodifferent.”(1BC,

secondgeneration,

41years,1week)

“I’d

goin

[toGP]for

ad-hocthingsif

something’s

been

lingeringonmore

thana

couple

ofweeks…I’d

nevergoto

A&E[accident

andemergency]because

that’sforsomethingthat’s

immediately

goingto

kill

youandIwasn’tjust

goingto

dropdown

dead…

notyetanyway.”

(31WB,45years,

1–2weeks)

DifficultybookingGPappointm

ents

Operatingasabarrier?

Yes

Yes

Yes

Yes

Yes

“Icouldn’twaitoutsidemy

GPbecauseIhadto

take

mychildrento

school…

I

hadto

waituntiltheholidays

togothere…

Ididn’tknow

I

could

telltheladyonthe

phonewhatIhadandshe

woul d

getmean

appointm

ent.(12BA,first

generation,43years,

3months)

“Itcanbehard

togetan

appointm

entbut…

I

alwaystellthem

whatI

am

ringingfor…

Isaid,

‘LookIhavefoundthis

lump,canyouhelp

me?’

andshesaid,‘Ohyes,

we’llgetyouin

today.’”

(26BA,second

generation,45years,

3–5days)

“It’svery

hard

[togetan

appointm

ent]sometimes

youwait3weeksbutItold

thereceptionistIfounda

lumpandIgotan

appointm

entthenextday.”

(14BC,firstgeneration,

63years,1day)

“Thewomanwasadamant

there

were

no

appointm

ents

andIthink

shesaid,‘W

hy,doyou

mindmeaskingwhat’sthe

appointm

entfor?’Isaid,‘I

thinkI’vefoundalumpin

mybreastandshesaid

hold

on1min.Shewent

aroundthebackandcame

backandsaid,‘Canyou

comebackat11.00am?’,I

went,‘OK…’.Theyallhave

theirlittlesystemsdon’t

they.”(13BC,second

generation,48years,

1week)

“Iwasreally

worried

becauseofwhatwas

happeningwithmysister

andthenwithmefinding

this

andIjustbrokedown

andtold

thereceptionist

mysisterhadbreast

cancerandIfounda

lump…

there

wasalittle

partofmethatknew

she

mightfeelsorryforme

andIwouldn’thaveto

wait…

andIthinkwiththe

cryingshedid

feelsorry

formebecauseitwas,

‘We’llfityouin

todayif

youcanmakeit’.”(30WB,

34years,2–3months)

Continued

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6Co

ntinued

BA

BC

WB

Findingawaythrough

thehealthcare

system

Firstgeneration

Secondgeneration

Firstgeneration

Secondgeneration

NA

Feelingdisempowered

Operatingasabarrier?

Yes

No

Yes

No

No

“Ineverknewanything

aboutcancer…

She[theGP]

said,‘Oh,buyabetter

bra’…

Isaid,‘Hello,this

ball

[lumpin

herarm

pit]is

rolling’butshetold

meto

takesomeparacetamoland

Isaid,‘Butthis

breastis

muchbigger’andIjust

believedwhatshetold

me:

‘Ohit’s

nothing.’ButInever

agreedwithwhatshe

sayingbutIsayto

myself,

‘She’s

agrandmotherletme

dothesethingssheis

tellingmeandseeafter

that’.”(17BA,first

generation,37years,

2weeks)

“Ifmydoctorhadgone,

‘Ohthere’s

nothingto

worryabout’Imighthave

droppeditbutthenI

would

think,‘No,Iknow

mybody’andyouwilldo

somethingaboutthis.”

(25BA,second

generation,44years,

2weeks)

“Itold

myGPIwasn’t

feelingwellandIthought,

‘Should

Itellheraboutmy

lump?Is

itim

portant?’…

I

didn’teventellmyGP

aboutmylumpuntilshe

askedmeandthenshe

didn’treally

commentonit

asamatterofconcern

it

didn’tbotherme.”(23BC,

firstgeneration,59years,

2years)

“Attheendofthedaywhat

Iwantis

importantas

well…

Iknow

tosay,‘This

iswhat’swrongwithme’.

Iwould

say,‘Yeah,this

is

whatIwant.Ineedyouto

dosomething’.Iwould

do

that.Somepeople

haven’t

gotthat.They’renotstrong

enoughto

insistokthis

is

whatIwantfrom

youbutI

canfightforwhatIwant.”

(8BC,secondgeneration,

53years,3months)

“Becauseofwhathad

happenedwithmy

sister…

Itold

myGP

aboutherandhesaid

he

didn’tthinkitwas

anythingto

really

worry

aboutbutbecauseofmy

family

history

he’d

refer

me…

Iknew

Iwasquite

youngto

behavingbreast

cancer…

otherw

iseI’m

not

sure

hewould

havesent

meforabiopsyand

everythingelsebutI

would

ofinsistedona

referralanyway.”(30WB,

34years,2–3months)

Difficultyorganisingandattendinghospitalappointm

ents

Operatingasabarrier?

Yes

No

No

No

No

“She[m

edic]didn’thaveto

tellmethatitdefinitely

wasn’tcancer.Allshe

neededto

dowastakemy

biopsyandleaveitto

the

people

whoare

theexperts

inthatfield

totellme

whetherIhadcancerornot,

becauseIfeelsoguilty

passingthosetwo

appointm

ents.”(24BA,first

generation,55years,

3days)

“Igotmyletterin

acouple

ofdayssayingabout

havingmytests…

I

wouldn’tcancelan

appointm

entbecauseyou

don’tknow

ifyouhave

cancerornotatthatpoint,

plusyou’reonly

worrying

yourselfifyouwaited.”

(46BA,2ndgeneration,

46years,3weeks)

“Igotmyletterandwent…

I

wouldn’tcancelorchange

myappointm

ent,Iwanted

toknow

whatitwassoit

would

havebeenabitsilly

wouldn’tit.”(2BC,first

generation,84years,

1day)

“Ididn’tgetmyletterandit

wasabout2weeks,I’m

thinking,‘Ishould

be

hearingbynow’you

know?SoIrangthe

hospitalandtheysaid,‘No,

wehaven’tgotanything’

sotheytold

meto

ringmy

GPandhewasreally

good

andsorteditout.”(9BC,

secondgeneration,

50years,1day)

“Igotmyappointm

entbut

ifIhadn’t,Iwould’ve

beenstraightdownmy

GPaskingwhy.”(27WB,

52years,sameday)

BA,BlackAfrican;BC,BlackCaribbean;GP,generalpractitioner;WB,WhiteBritish.

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groups outside London did not experience thesedifficulties.

Feeling disempoweredWhite British and second generation Black Caribbeanand Black African women appeared more empoweredthan other women (eg, they were aware of nationalguidelines for referrals of suspected breast cancer andsaid they felt comfortable querying GP diagnoses andseeking a second opinion). Most also said they knew GPswere not specialists. However, first generation BlackAfrican and Black Caribbean women were less forthrightwith professionals. Some experienced what they per-ceived as dismissive behaviour from their GP, including:not conducting breast examinations; telling them theirbreast change was normal; advising them to take painkil-lers despite not having pain; prescribing antibiotics;advising them to buy a better bra; or asking whetherthey had been touching their breasts to cause symptoms.They reported feeling uncomfortable questioning theirGP, believing doctors were ‘experts’ and patients, ‘littlepeople’. Consequently, some reported delaying seeingtheir GP a second time. Some second generation BlackCaribbean women in the focus groups believed Blackpatients, particularly those with strong accents, receiveda different level of care from White doctors than Whitepatients.

Difficulty organising and attending hospital appointmentsWhite British, first generation and second generationBlack Caribbean and second generation Black Africanwomen appeared proactive in their care. They queriedbreast clinic appointments if these did not arrive andattended results appointments. Conversely, many firstgeneration Black African women seemed unaware theycould contact the hospital or their GP if they did receiveappointments for investigations or results. Some repeat-edly cancelled results appointments believing hospitalstaff would contact them if they had cancer.

DISCUSSIONSummary of findingsOur findings suggest clear and important distinctionsbetween and within ethnic groups as well as similaritiesnot previously identified. Women’s nationality andcountry of birth appeared to be important factors influ-encing knowledge, attitudes and behaviours. Someregional differences also appeared to exist regardingease of booking GP appointments and there was somesuggestion regarding variability of treatment by ethnicityin one location. Second generation Black Caribbeanwomen appeared similar to White British women regard-ing barriers to early presentation and diagnosis withbreast cancer, and their ability to overcome them.However, first generation Black African women seemedthe most disempowered group and appeared particularlyvulnerable to delays. They typically had low breast

awareness and symptom knowledge and were unaware ofthe importance of early diagnosis or how to negotiatethe UK healthcare system. Older White British women(≥70 years) and first generation Black African and BlackCaribbean women shared conservative attitudes andtaboos about breast awareness. All women tended toview themselves at low risk of the disease, and voiceduncertainty over how to be breast aware and had diffi-culty appraising non-lump symptoms.

Conceptualisation of illnessConsistent with previous studies, misattribution of symp-toms appeared to influence longer times to presentationamong all women.9 First generation Black African andBlack Caribbean women who experienced painless breastchanges, women with non-lump changes and those withlumpy breasts seemed most likely to misattribute orignore symptoms. Early stage cancer does not figure inthe popular experience in African countries.10 11 Rapidlydeveloping infectious diseases predominate, which mayexplain why first generation Black African women tendedto experience difficulties appraising their breast cancersymptoms. Therefore, health professionals may considerdrawing out and taking into account the fact that concep-tualisation of cancer symptoms may vary between ethnicgroups.12

Rethinking health promotion and media messagesOur findings suggest it may be necessary for health pro-motion and media messages about breast cancer to bemodified. It is very important that GPs inform womenthat family history is a strong risk factor for breastcancer. However, women also need to be aware that themajority of women diagnosed with breast cancer do nothave a family history of the disease. This is important forhealth promotion messages as our findings suggest thatwomen without a family history of breast cancer may notseek help in a timely fashion, should symptoms of thedisease arise. Further, there appears to be an emphasisin the media on lumps and a resultant lack of clarityover non-lump symptoms, which may influence healthbehaviours. Lack of understanding about what to do tobe breast aware appeared to be a barrier for all ethnicgroups in this study. While breast self-examination doesnot prevent deaths due to breast cancer,13 women areencouraged to be breast aware.14 Unfortunately, womenmay not always be mindful of what being breast awaremeans. Logically, if women are unaware of how theirbreasts typically look and feel, they could find it difficultto recognise subtle changes and might only detect themwhen the disease is relatively advanced.15 Therefore,health messages might be needed outlining the benefitsof early diagnosis and specifically what breast awarenessentails.16 It may be important to publicise increasedbreast cancer survival rates17 because some studiessuggest that fear-led messages communicating negativeconsequences of delayed presentation may lead to delayin women who wish to avoid a cancer diagnosis.18

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However, other research indicates that relaying evidence-based risk for colorectal cancer through motivationalinterviewing might be highly effective.19 This suggeststhat how messages are delivered (eg, through motiv-ational interviewing) as well as their content may influ-ence behaviour. Our findings have identified potentialkey differences in breast cancer perceptions and beha-viours between and within ethnic groups. Therefore,health promotion messages may need to be framedaccordingly.20

Understanding diverse communities’ needsDifficulty in booking and attending appointmentsappeared to contribute to longer presentation times inLondon for professional women and for casual workers(frequently first generation Black African women).Limited access to healthcare services is a well-knownbarrier to help-seeking.21 Increased GP practice openinghours,22 community-based health clinics23 and tele-phone consultations,24 may prove effective at meetingneed, particularly in London where access can be morechallenging than in the rest of England.25 Further,opportunities to educate first generation Black Africanwomen about the importance of early diagnosis or torefer them directly onto breast specialists may have beenmissed by A&E staff. Black Caribbean women in theSomerset focus group perceived ethnic disparities inhealthcare. This may reflect the relatively small Blackpopulation in that geographical location; staff may havelimited awareness of women’s culturally-related needs.Further, Black African women seemed most likely toreport provider delays. Disparities could be addressedthrough a framework of cultural interventions—whichcould include appropriate health educational materialstailored to different ethnic groups’ needs and furthertraining for healthcare professionals on the knowledge,attitudes and behaviours of different ethnic groups—toimprove patient outcomes.26

Strengths and limitationsThe findings are specific to the UK but appear to reson-ate with some US research.4 The sample was large for aqualitative study (n=94). However, despite this we maynot have fully captured the diversity of Black Africanwomen despite reporting findings by ethnic group andgeneration. Variation is likely to exist between countriesand regions in relation to cancer-related health educa-tion,11 awareness, beliefs, attitudes and behaviours.27

The sample size and heterogeneity of participantsmeans the sample is unlikely to be representative andmay be too small to inform. Thus, some caution shouldbe paid to health promotion messages advocated in thispaper until findings presented have been furthervalidated.Clinical records showed that more Black women were

diagnosed with late stage disease than White women. Wepurposively sought to include Black as well as Whitewomen with late stage disease to understand reasons for

late diagnosis. However, in the event, more Black womenwith advanced disease were recruited to the study, whichcould have impacted the findings. Further, the retro-spective design of the interview phase may have hin-dered women’s accurate recall of events.Untangling the effects of socioeconomic factors and

ethnicity is difficult. Work of others, including Schneider,clearly demonstrates the coexistence of socioeconomicfactors and ethnicity and their influence over cancerstaging and outcomes.28 We sought to address this issueby matching White British women with Black African andBlack Caribbean women when possible. However, WhiteBritish women tended to be more highly educated thanother ethnic groups, which could impact on the findings.Interview findings were strengthened by their valid-

ation using vignettes, created from the interviews, infocus groups. However, focus group data did not confirmexpected differences4 between the help-seeking intentionof women without breast cancer and actual help-seekingof women with breast cancer. This finding may be an arte-fact of sampling, may have arisen because the vignettesprompted women to think about particular barriers, andalso may have resulted from inclusion of women with andwithout breast cancer in the same focus group or resultedfrom inclusion of women for whom breast cancer wasparticularly salient due to their friend/relative’s breastcancer experiences. Family and friends without breastcancer might have felt unwilling to contradict the experi-ences of women with breast cancer or found their ownviews similar to theirs. Women who had never had afriend or family member with breast cancer may respondto breast changes differently. These women were notrepresented in this research.We were aware that researchers’ attitudes in qualitative

research can influence design, data collection and ana-lysis. We therefore used the steering committee to ensurea balanced representation of the data.29 In addition, thesteering group contributed to understanding study find-ings and their implications for policy and practice.

CONCLUSIONSOur findings suggest there are important differences inbarriers to early diagnosis of breast cancer between BlackAfrican, Black Caribbean and White British women livingin the UK. First generation Black African women experi-enced the most barriers and were therefore particularlyvulnerable to delay. In contrast, second generation BlackCaribbean and White British women were similar andexperienced fewer barriers compared to other groups.Older White British women (≥70 years) and first gener-ation Black African and Black Caribbean women sharedconservative attitudes and taboos about breast awareness.Women from all ethnic groups were confused about whatthey needed to do to be breast aware.The treatment of Black women homogenously in the

reporting of studies is very likely to mask important dis-tinctions within and between ethnic groups. Current

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media and health promotion messages need reframingto promote early presentation. Working with communi-ties and developing culturally appropriate materials canhelp break down taboos and stigma, raise awareness,increase discussion of breast cancer and promote prompthelp-seeking for breast symptoms among women withlower cancer awareness. These interventions need to helpwomen determine what changes may mean, andempower them to decide to seek help and attend health-care appointments for early diagnosis and intervention.

Author affiliations1King’s College London, Florence Nightingale School of Nursing andMidwifery, London, UK2National Nursing Research Unit, King’s College London, Florence NightingaleSchool of Nursing and Midwifery, London, UK3The Royal Marsden NHS Foundation Trust, London, UK4Faculty of Life Sciences and Medicine, King’s College London, London, UK5National Cancer Intelligence Network, Public Health England, London, UK6University of Surrey, School of Health Sciences, Guildford, Surrey, UK

Twitter Follow Grace Lucas at @gracerbowman

Acknowledgements The authors thank M MacKenzie (Independent CancerPatients Voice), M Ornstein, K Scanlon (Breast Cancer Care), H Shekede, AShewbridge (Guy’s and St Thomas’ NHS Foundation Trust) and R Thompson(BME Cancer Communities) for their contribution to the project as steeringcommittee members.

Contributors ER, CELJ, JM, GL, EAD and RHJ were responsible for the studydesign. CELJ was responsible for data collection. CELJ, JM, GL and ER wereresponsible for data analysis and interpretation. All authors contributed indrafting the manuscript. ER is guarantor.

Funding This work was supported by the National Awareness and EarlyDiagnosis Initiative (NAEDI; grant number C7000/A12219). The NAEDIfunding consortium, under the auspices of the National Cancer ResearchInstitute (NCRI), consists of Cancer Research UK; Department of Health(England); Economic and Social Research Council; Health & Social Care R&DDivision, Public Health Agency (Northern Ireland); National Institute for SocialCare and Health Research (Wales) and the Scottish Government.

Competing interests None.

Ethics approval Ethics approval was obtained from the East of EnglandResearch Ethics Committee (MREC number 11/EE/0118) and governanceapproval was obtained from participating NHS Trusts. All women gave writteninformed consent at the beginning of the study to CELJ or clinical staff. Thiswas confirmed verbally prior to interviews and focus groups.

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement No additional data are available.

Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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