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 February 2004 Figure 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 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: Jenny.Lloyd@nemhpt.nhs.uk http://oncology.thelancet.com For personal use Only reproduce with permission from The Lancet 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 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 you think is wrong? What caused it? What 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 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 THE LANCET Oncology Vol February 2004 For personal use Only reproduce with permission from The Lancet http://oncology.thelancet.com 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 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 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 to prevent it were significantly less likely than others to report that they had had a cervical smear within the previous 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 http://oncology.thelancet.com For personal use Only reproduce with permission from The Lancet 121 Personal view 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 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 THE LANCET Oncology Vol February 2004 For personal use Only reproduce with permission from The Lancet http://oncology.thelancet.com 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 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 http://oncology.thelancet.com For personal use Only reproduce with permission from The Lancet 123 Personal view 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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http://oncology.thelancet.com ... 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... 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... 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