open access research barriersto early diagnosis of
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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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Table
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.
Jones CEL, et al. BMJ Open 2015;5:e006944. doi:10.1136/bmjopen-2014-006944 9
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rotected by copyright.http://bm
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/B
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pen: first published as 10.1136/bmjopen-2014-006944 on 13 M
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nloaded from
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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pen: first published as 10.1136/bmjopen-2014-006944 on 13 M
arch 2015. Dow
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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
12 Jones CEL, et al. BMJ Open 2015;5:e006944. doi:10.1136/bmjopen-2014-006944
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Table
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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Table
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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Table
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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