Personal view

Attitudes towards cancer

Explanatory models of and attitudes towards
cancer in different cultures
Simon Dein

Courtesy of Dale Crawford, US Geological Survey

Culture determines the different ways that patients
understand cancer, the ways they explain it, and their
attitudes towards it. These factors affect the patient’s
emotional response to the disease and health behaviour in
terms of prevention and treatment. In this paper we review
the explanatory models for cancer in several cultural groups.
These models range from metaphysical to interpersonal and
physical. Cultural explanations of health and health
behaviour could detract from social and economic factors
that might be more important as determinants of these
behaviours.
Lancet Oncol 2004; 5: 119–24

The ways in which different groups of people respond
to life-threatening disease is highly dependent on their
cultural backgrounds. Medical anthropologists differentiate
between lay people’s models of a sickness and those of health
practitioners. The first is referred to as illness—the patient’s
perception, experience, expression, and pattern of coping
with symptoms. The second is referred to as disease—
meaning cellular or organ pathology. Each culture has its

own system of beliefs, perceptions, and ideas about health
and illness.1 Understanding cultural responses to cancer is as
important to health-care professionals as knowledge of
statistical trends (figure 1).2
This paper focuses on the explanatory models (often
referred to as lay beliefs) and attitudes that different cultural
groups hold about cancer using data from the published
material relating to cancer. It must, however, be
acknowledged that there has been little work done on
explanatory models in the majority white culture in the USA
and UK. Beliefs about cancer may determine the perception
of risk of developing cancer and subsequently can have
substantial effects on participation in screening programmes,
decisions about treatments, doctor–patient relationships,
and emotional responses to the disease and therefore are of
importance to oncologists and other health professionals
working with patients with cancer.3 It is important to
differentiate a lack of biomedical knowledge from lay beliefs.
A person may have little understanding of the factors that
cause cancer or may hold lay beliefs that differ from
biomedical understanding. In some societies there is no word
for cancer4 and it cannot be assumed that the word cancer
means the same in all cultural groups.5

Culture, ethnicity, and race in the cancer
literature
Researchers looking at cancer in different groups across
the world typically divide these groups up in terms of
THE LANCET Oncology Vol 5 February 2004


Figure 1. Personal attitudes towards desease are culturally determined
and vary around the world.

culture, race, or ethnicity. These terms are often used
interchangeably. However, they are different and each is
problematic in itself. Culture refers to a set of guidelines
which individuals learn as members of a particular society,
and which tells them how to view the world, how to
experience it emotionally, and how to behave in relation to
other people.1 There is no such thing as a pure culture and
the boundaries between cultural groups are often unclear.
The term race refers to biological differences between
groups of people, although anthropologists usually reject
this idea for lacking scientific validity. Ethnicity may include
not only culture but also shared origins, language, religion,
and perception of self. There is much debate about the
classification of ethnicity.6 The use of this term becomes
especially problematic in second and third generation
people who might have considerable contact with the host
culture. There is a need for adequate definitions of ethnic
boundaries. For example, Hindus do not constitute one
discrete cultural group: those born and educated in the UK
SD is a senior lecturer in anthropology and medicine at University
College London, UK and Honorary Consultant Psychiatrist at
Princess Alexandra Hospital, Harlow, Essex, UK.
Correspondence: Dr Simon Dein, The Derwent Centre, Princess
Alexandra Hospital, Hamstel Road, Harlow, Essex CM20 1QX, UK.
Tel: +44 (0)1279 827262. Fax: +44 (0)1279 454018. Email:





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119


Personal view

Attitudes towards cancer

may hold different beliefs about cancer to those who have
emigrated to Britain.7 Different studies have classified people
in different ways according to country of birth, country of
origin, or by the individual’s perception of their ethnicity.8
For this reason crosscultural comparisons may be difficult.
It is important to point out that invoking culture as an
explanation for differences in health experiences between
groups may result in stereotyping and victim blaming, and
could detract from social factors such as deprivation and
racism9 that could be more important in determining health
status and behaviour. The expressed beliefs will be affected
by the individual’s level of education and socioeconomic
group in addition to their personal outlook on life.
In the USA, studies suggest that more black people than
white people die from breast, colorectal, and prostate cancer10
even when age and geographical area are accounted for. This
frequency could be explained by a later stage of presentation
among the black population that in turn might relate to
attitudes of these groups and lack of access to health care.

The distinction between what is ethnic and what is
socioeconomic is far from clear in minority groups.11
Although differences in socioeconomic status or class may
be more important than ethnic or cultural differences in
explaining ethnic minority health status, both culture and
ethnicity are still important. Smaje9 argues for the
importance of “more refined approaches to the dynamic
interactions between culture, socioeconomic status, and
health experience”.
To be of value in explanatory or practical terms,
“culture” needs to be recognised as a context that is flexible
and contested, and which shapes, and is shaped by other
social and structural contexts of people’s lives. However, it is
not always easy to disentangle the effects of ethnicity from
the effects of poverty and disadvantage.

Explanatory models
Explanatory models are sets of beliefs or understandings that
specify how an illness is caused, its mode of onset and
symptoms, pathophysiology, and its treatment.12 These
models are formed and used to cope with specific health
problems and consequently need to be analysed in that
setting. Explanatory models are attributes of individuals,
drawing on general knowledge but remaining at least partly
idiosyncratic and situational. They are often fragmentary,
not fully worked out, and change or are affected by the
individual’s experiences.
Explanatory models do not determine medical
behaviour in a mechanical way but could provide patients
with the information they need when choosing and

evaluating medical strategies, communicating with others
about sickness, and defining their own distress. Because
such models are pragmatic they are strongly orientated to
making statements about causality. These explanatory
models may relate to specific types of health-seeking
behaviour and should be elicited from patients and their
families so that physicians can understand specific illness
behaviours.
Health professionals also hold explanatory models
related to their biomedical training and its subculture.

120

Questions to elicit patients’ explanatory models
What do you think is wrong?
What caused it?
What do you want me to do?
What is the course of this illness?
What is the main way this illness or treatment has affected your life?
What do you fear most about this illness or treatment?

Patients and physicians may hold differing explanatory
models of illness. Lack of understanding, acceptance, and
respect for the value of other cultural perceptions and
explanatory models may create doctor–patient communication problems and negatively affect compliance.
Kleinman12 outlines six questions that are used to elicit
explanatory models with patients (see panel).

Eliciting explanatory models about cancer
Lay beliefs about cancer may be elicited in two major ways:

(i) structured interviews or (ii) ethnographic interviews.
Several scales have been devised to measure beliefs about
cancer, including the black American,13 adolescent
perception,14 and the Chinese beliefs questionnaire15 based
on Kleinman’s idea of explanatory models. These scales
measure attitudes towards and beliefs about cancer, cancer
prevention, and treatments within a range of age groups and
ethnic populations. They vary in their validity and
reliability.2 They are quick and easy to administer and can be
analysed using routine statistics.
In ethnographic interviews the researcher elicits an in
depth account of how interviewees understand a particular
disease—the essential principle in developing an
understanding of a person’s beliefs is to try and understand
the world . . . through that person’s eyes”.7 This is the “emic”
perspective. The interviewer does not pursue any a priori
assumptions and attempts to move outside any ethnocentric
views. Unlike quantitative studies, qualitative interviews are
done on small numbers of interviewees to obtain detailed
information. They are analysed by content analysis. Data
used from qualitative interviews can be used to devise
quantitative scales.

Perceptions of cancer in ethnic minorities in the
USA and Canada
Culture determines how people respond to misfortune. In
groups that hold a fatalistic outlook on life, the belief may be
held that the individual cannot necessarily exercise control
over his or her health. Attempts to modify lifestyle to prevent
disease onset may not be well received. Patients with cancer

may accept their imminent demise and refuse potentially lifesaving treatment. Psychosocial responses including fear,
underestimation, fatalism, and pessimism have been
identified as factors inhibiting black American patients from
participating in health promotion behaviour.16,17 Illness may
be believed to result from failure to live according to God’s
will and health-promoting behaviour may be considered
useless.18 Attitudes to illness, however, change over time. The
American attitude 50 years ago that cancer was associated
with death and hopelessness has been replaced by a culture of

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Personal view

Attitudes towards cancer

hope and the perception that many patients are survivors
who have beaten their illness with fighting spirit.19
It cannot be assumed that biomedical knowledge about
cancer is commonplace. In one study in the USA among a
socioeconomically deprived population, one-third of
subjects were unaware of the link between smoking and lung
cancer.20 Similarly, a cross-sectional study of 706 Salvadorean men in California asked about general statements
relating to cancer, factors causing cancer, factors modifying
the chances of getting cancer, the spread of cancer, who is

more likely to get cancer, and treatment effectiveness. The
study suggested that men in this survey lacked knowledge
about the symptoms of cancer and early detection methods.21
The area of cultural beliefs about cancer is underresearched but there is some evidence that the definition of
what constitutes cancer varies between cultural groups. One
study on explanatory models of breast and cervical cancer
used semi-structured interviews among 89 low-income
black women in Atlanta, GA, USA. The researchers elicited
the belief that the only real cancer was a late-stage cancer
causing death and that a non-fatal condition could not be
cancer and therefore screening was of little use. For this
group of people, cancer was perceived to be incurable.
Ultimately, the women believed their destinies were
determined by God. The most common explanations for
cancer included a bruise or a sore that would not heal. These
women also believed that knowing they had early cancer
could cause mental distress and possibly speed up death.5
Despite the fact that mammography is a valuable tool for
early detection of breast cancer, there is evidence that most
black women do not undergo mammography, which may
result in late presentations of disease. Late presentation may
relate to the fact that these women hold negative attitudes
and perceptions that involve images of death, feelings of fear,
and concerns about unrealistic physical impairments that
result from breast cancer.22 Similar results were reported in a
study of focus groups of black American women. In this
study, breast cancer was held to be fatal—a white women’s
disease with a stigma attached. There was a direct association
between these cultural beliefs and the underuse of
mammography.23

Factors such as reliance on God to cure cancer,
reluctance to discuss potential cancer with a husband or
male partner, general fatalism, or lack of knowledge that a
breast lump can be serious even if not painful may
discourage a woman from seeking medical care for a
potential breast abnormality. In one study, women feared
that their husbands would leave them if a cancer diagnosis
became known since they would become unattractive or a
burden on their partners.24 Another study among black
Americans examined the determinants of participation in
cancer screening. The results indicated a prevailing belief
that such programmes were useful only for those who
already had a diagnosis of breast cancer.25
Beliefs about cancer may affect treatment decisions. A
study of 128 black American and white patients with breast
cancer reported different perceptions among various cultural
and social groups. These misconceptions about cause and
treatment were related to increasing age and lack of education.
THE LANCET Oncology Vol 5 February 2004

The older and less-educated patients were more likely to
endorse the belief that bumps or bruising to the breast caused
cancer and that cancer was contagious. Black American
patients, the elderly, and less-educated white patients were
more likely to have confidence in non–traditional cancer
treatments such as salves and vitamins and to hold that
surgery could cause the cancer to spread.17
In relation to cervical cancer, a postal study looking at
delays in care for cervical screening in a multiethnic
population (white American, Latinas, Asian Americans)

reported that delay was more common in Spanish-speaking
Latinas, and women of Asian descent, especially in those
who were more fatalistic and endorsed more misconceptions
about cancer.26 Similar results were seen in a study
examining the demographic and other predictors of fatalistic
beliefs among Hispanic women and white American women
in California using both ethnographic interviews and
telephone surveys. Latina immigrants (born outside the
USA) were more likely than US-born Latinas or white
American women to hold fatalistic beliefs. Latinas who
believed that fate was a risk factor for cervical cancer, that
they would rather not know if they had the disease, and that
there was nothing one could do to prevent it were
significantly less likely than others to report that they had
had a cervical smear within the previous 3 years.27
Fatalistic attitudes have been proposed as causing poorer
prognoses in colorectal cancer compared with the majority
white population. For example, black Americans have
greater colorectal-cancer mortality compared with the
general population yet are less likely to participate in faecal
occult blood testing. This poor participation may result from
“cancer fatalism”, the belief that death is inevitable when
cancer is present.28 It is important to note that there is much
controversy over the fatalism scales in terms of use and
measurement.
Gender may be more important than ethnicity, however,
in determining beliefs about cancer. In one study there were
no reported differences in the perceived causes of lung
cancer between ethnic groups but men were significantly less
likely than women to view illness as caused by sin, sex, or as a

form of punishment.29
Lack of knowledge about a disease can result in lay
theories. In a qualitative study of 50 south Asian women
(30–72 yrs) in western Canada, subjects proposed five
domains of belief relating to the development of breast
cancer: damage to the breast, a contagious factor, bringing it
upon oneself through negative lifestyle, the hands of others
(careless words, curses, divine power), and being passed
down in the family.30 Among Chinese-American women
lower participation in screening programmes compared
with the majority population may depend on a belief that
looking for a problem may bring it about.31

Understanding and perceptions of cancer in Asia
One study reports explanatory models about cancer in north
India. In this study, women with cervical cancer attributed
their illness to metaphysical beliefs such as fate, God’s will,
and karma. Other proposed causes included family history,
mental stress, and physical weakness. Of interest these



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Attitudes towards cancer


made”—eg, magic. The traditional healers used a combination of treatment modalities including herbs, divination,
magic, and psychotherapy.33

Understanding and perceptions of cancer in
Australia
A qualitative study examining 20 middle-aged working class
women of Italian-Australian descent looked at understandings of cancer. Cancer was found to be attributed to
the menopause where blood no longer flowed and became
putrid. Women were reluctant to use the word cancer, using
instead “that terrible disease”. Included in the rubric cancer
were several tumours both benign and malignant. Only
malignant tumours were held to be fatal. Benign tumours
were cancers that could be cured and were described as
being little, centred in one place, not having roots and not
being in the bloodstream. Malignant tumours were said to
have roots, and spread through the bloodstream. On
account of this, cutting out the tumour could not be
effective. The perceived prognosis for a malignant tumour
was nearly always death.
Several women held that if a doctor discovered a
malignant tumour the woman should not be told since this
knowledge could hasten her death. A third group of
conditions were not considered to be tumours but could
turn into tumours if not treated. This group included
fibroids, cold sores, inflammation, and cysts. In general,
cancer was held to have no symptoms and was frequently
discovered too late when the roots had spread. Other
postulated causes of cancer were sorrow, unhappiness, and
living an unnatural life.34


Courtesy of Cancer Black Care

Understanding and perceptions of cancer in the
UK

Figure 2. Front cover of a leaflet published by Cancer Black Care,
London, UK, which aims to promote cancer awareness within specific
ethnic groups.

metaphysical factors were not correlated with psychological
recovery.32

Understanding and perceptions of cancer in
Africa
A qualitative study looking at traditional healers and
perceptions of the causes and treatment of cancer among the
Igbo of the Anambra state of Nigeria indicated that
traditional healers and biomedical physicians perceived
cancer in different ways. Among the Igbo the diagnosis of
cancer is a twofold event involving both the organic and the
spiritual. Traditional healers held that cancer was caused by
magic, bad blood, infections by germs, bad air, incest, and
adultery. Traditional Igbo healers suggested that physicians
made referrals to them when the cause of cancer was “man

122

There has been little work examining knowledge and
understandings of cancer in the UK. One study among the

white majority reported perceived causes to range from
moral wrong-doing to contagious factors.35 Other perceived
causes included trauma such as divorce or separation.8
Another study found a clear lack of knowledge about cancer,
especially among non-English speaking individuals and
older people. In this study, the beliefs of the minority groups
did not differ widely from those of the majority white
population (Baxter C, unpublished data). Cultural factors
may affect treatment decisions. West Indian women in the
UK are reluctant to have a hysterectomy because they
consider that menstruation is a cleansing act clearing the
body of impurity. After surgery they see themselves as less of
a woman and are afraid that their partner may leave.36 In
another study, it was seen that those who believed
themselves to be fit (and therefore not harbouring any
serious disease) did not understand the concept of
screening.37
In the UK various metaphors are used to define cancer
and generally relate to its severity and evasion of medical
treatments. These include “unrestrained”, “uncontrollable”,
“chaotic”, or “evil force”—a disease that might afflict
anyone at any time in any place. In the popular imagination
cancer equals death.38 It is a disease that in modern western

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Personal view

Attitudes towards cancer

societies is often viewed as being brought upon oneself
through irresponsibility: bad diets, smoking, or by the
suppression of angry or negative thoughts.39

Limitations of studies
Much research has been qualitative using small numbers of
subjects and with various degrees of explanation as to how
the data was analysed. Many papers have not adopted a
critical stance on ethnic terms such as “African-American”
(with the assumption that this constitutes an homogenous
group). So far most of the research derives from black
American subjects and there is a distinct lack of data from
other parts of the world. In the UK, there has been little
research on this important area, both among ethnic
minorities and the majority white culture. However, these
limitations aside, this review suggests that understandings
and attitudes towards cancer are highly variable culturally.
There is a need for research examining whether and how
these beliefs relate to the late presentations of cancer in the
black population compared with the majority white
population as has been shown in the USA.10

Improving cultural sensitivity
In terms of screening, treatment, and palliation it is now
recognised that services are not always accessible nor

sensitive to the needs of ethnic minority groups. Service use,
especially tertiary care, is also thought to be low in ethnic
minorities both in the UK and USA.40 Working with patients
from another culture entails a degree of cultural sensitivity.
Practitioners should be made aware that their own
professional values are socially and culturally constructed.
Patients’ health beliefs concerning cancer and its treatments
should be elicited. Qualitative studies including
ethnographic interviews are very useful in eliciting beliefs
and attitudes about cancer that can inform prevention and
treatment programmes. For instance a recent ethnographic
study among Asian-American women pointed to the
importance of attitudes about body image in the choice of
treatments for breast cancer. Asian-American women were
not as concerned as white American women about their
body image and were more likely to choose mastectomy as
opposed to breast conserving operations compared with the
white American women.41
Health education programmes need to focus on
modifying beliefs and attitudes about cancer.
Representatives from a given culture should be involved in
consultations and may act as “culture brokers”. There is a
need to adapt messages on screening, diagnosis, and
treatment to the local community’s ways of thinking.
Screening methods must be ethnically and culturally based
and overcome cultural barriers. One American project, the
Witness Project, was developed taking into account black
American misconceptions about breast cancer and has
resulted in an increased number of black American women
getting a mammogram. In this programme, culturally

appropriate role models (witness role models) who had
survived cancer “witnessed” or talked about their cancer
experiences with other black American women addressing
the fatalistic view. These survivors both showed that cancer
THE LANCET Oncology Vol 5 February 2004

is not a death sentence and also by publicly discussing it
helped remove the stigmatisation.23
However, it must be emphasised that non-participation
in medical tests, maintenance of an unhealthy lifestyle, and
late presentation for professional help may not necessarily
result from cultural factors such as fatalism and other
health-related beliefs. Other factors such as lack of education
about symptoms and treatments may be just as important.
In the UK, anecdotal reports suggest that certain ethnic
groups such as Bangladeshi women have low attendance for
breast and cervical screening. However, despite the
impression that ethnic minorities may be reluctant to be
screened, one qualitative study in east London, UK, looking
at women from a number of ethnic groups—including
Turks, Kurds, Bangladeshis, and Chinese-speaking
women—found that, in general, these women had a positive
attitude towards cervical screening, and once they
understood the purpose of the test were enthusiastic about
it. Language, administrative issues, and concerns about
sterility were barriers to screening. The authors suggested
that focus groups might improve the numbers of women
willing to partake in screening programmes.42
There is a need for effective community-based
interventions targeted at minority groups including

culturally sensitive health-education material, bilingual
interpreters, and information specifically targeting recent
immigrants. In the UK, leaflets explaining national screening
programme are now routinely printed in five non-English
languages including Gujarati, Punjabi, Urdu, Bengali, and
Cantonese, and there are several groups offering support to
ethnic minority patients and their families. One example is
Cancer Black Care in London, UK (figure 2), which was
created to raise cancer awareness among local people and to
offer help to anyone with cancer. The group supports people
from various ethnic groups including Asian, Turkish, and
Caribbean communities.

Conclusion
This paper has examined explanatory models and
perceptions of cancer in a range of cultural groups. These
determine the emotional response to cancer, participation in
screening, use and compliance with treatment, and the
relationship between health professionals and patients. It is
essential, therefore, that these explanatory models are
elicited from patients and an attempts are made to
understand them and incorporate them into treatment. This
might enhance both doctor–patient relationships and
improve compliance.
It is important to emphasise that practitioners should
not “blame the victim” for their beliefs and that it is not the
patients’ responsibility to change their beliefs in response
Search strategy and selection criteria
Data for this review were obtained by searches of MEDLINE,
Clin Psyc, CINAHL, Social Science Abstracts, ASSIA, and

EMBASE using the search terms “culture”, “ethnicity”,
“cancer”, “explanation”, and “attitudes”. Only papers
published in English between 1960 and 2003 were included.



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Attitudes towards cancer

to biomedical culture. But rather it is biomedical culture
that should be modified to be culturally appropriate to
the patient. Adopting this approach would provide an
opportunity to improve the cultural competency of
practitioners.
Conflict of interest

22
23

None declared.
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