Various research studies undertaken in the last two years on the cancer information needs of BME communities have found a distinct shortage of information that addresses the community’s needs in culturally sensitive terms or in easy-to-understand, colloquial translation. New research studies have been conducted as part of a needs assessment process through some NOF-funded projects. In the course of their work in assessing needs, researchers have also found that many healthcare professionals working in the field of cancer do not understand the BME community’s needs and that different approaches are needed for the delivery of services (McKain, 2002).

Cancerbackup’s research among the NOF-funded projects has revealed the problem of late presentation by BME community patients. When patients present with cancer at an advanced stage, it is often too late for life-saving treatment. The majority have been found to have little understanding of cancer – particularly the importance of early diagnosis and treatment.

According to the National Cancer Alliance (2000) ‘good communication with the doctors, nurses and health professionals can be very helpful in reducing the fear, ambiguity and anxiety about the treatment and care’.

Cancer Resource Centre and Cancer Equality’s report by Toshal Patel (2002) highlighted the need for information and interpretation services. The report also revealed that many people interviewed about clinical procedures, tests and treatments were very unclear about what would be happening to them.

McKain (2002), who looked at the cancer information needs of BME patients at the Christie Hospital, Manchester, found that BME patients who could not read or speak English were being disadvantaged because all patient information was produced in English. The study also found that nationally there is limited information available on cancer treatment specifically for BME communities.

In Newham, Cox and Lanceley (2003) made the following recommendations in their research report on the information needs of people from BME communities:

• the type of information that should be made available to the statutory and voluntary agency workers must address variations in socio-economic groups;
   
• cancer information should be provided in print and other formats for people from ethnic minority groups.

Cancerbackup would add that information in forms other than print should be provided to statutory and voluntary organisations for their staff who work in BME communities.

Questionnaires used by several project workers working in the cancer field with BME communities showed that people wanted general written information on cancer rather than site-specific information. This partly reflects the difficulties of translating clinical information, as well as people’s ability to understand the subject matter in detail, even when it is in their own language, without support.

Within some BME communities, awareness of health information is low not because people are inarticulate or illiterate but because in their culture it is simply not the custom to ask for or wish to access such information. Some health professionals from these communities have a corresponding difficulty in imparting health information to their own ethnic group. This problem may stem from a community’s own perception of health information or from its cultural values, including religion and family ethos.

Within many BME communities (both in their countries of origin and in the UK) the systems and protocols for the everyday delivery of health information have simply not developed. Clinicians can play a key role in delivering information but gaps in cultural understanding, a lack of training, limited access to language support and a lack of relevant resources have hindered such communication.

Ethnic monitoring

Following the Government’s decision to record ethnicity in relation to health and social care services, in future it is hoped that provision for minority ethnic communities will improve. Until recently, GP practices as well as the UK’s 12 cancer registries have been slow to record ethnicity (there is no compulsion), which has made it difficult to gauge how many patients from BME communities are affected by cancer.

Communicating information and education

In the Western world it is now generally accepted that informing patients and communicating with them about their medical problems has been found to improve their physiological and psychological response to therapy. In many parts of the world provision of this type of information is not considered essential and individuals from these countries are not always comfortable or direct about asking for verbal or written information. For health professionals to communicate with patients or carers is not normal practice and is not thought necessary in many cultures; and the concept of patients making informed decisions, or participating in decision-making on issues of health, is unknown in many countries.

Anecdotally, it is reported that some healthcare professionals coming from abroad to England may provide the relevant information to a British patient but may not consider this essential or appropriate for their BME patients.
Also anecdotally, several workers from the BME network mentioned to the writer of this report the lack of communication experienced by BME patients from BME health professionals.

Within some BME communities large numbers of people have little or no education. The health system and ways of accessing services also differ from country to country around the world. This lack of education and knowledge of systems is compounded by the barriers of language, and of racial, cultural and religious issues that affect the uptake of any services. Additionally, there is often a lack of basic understanding of physiology – of how the body is made up and how it works.

Different countries, different cultures, different journeys

The lifestyle, religion, culture, language, dietary habits, perception and expectation of services in England are different for each ethnic group. Understanding of health issues is further complicated by the different experiences that people have had earlier in their lives before coming to Britain. For example, many people may have come from villages or small towns where they received little or no education and have worked in manual jobs; others may have come with high levels of education and worked in Britain in different fields from those in which they were trained. The understanding of the health system and of information delivery by these groups will be different from that of second- and third-generation residents. Therefore it is essential that information providers and health professionals do not make assumptions based on inadequate knowledge of the cultural background.

The South East Asian community in England represents people who came to the UK either directly from South East Asia or via, for example, East Africa, the Caribbean, Mauritius, Malaysia and other areas. Until the early 1970s there were two distinct groups of immigrants:

1. those who came on their own or with a partner as first-generation immigrants; and
2. those who came as part of a larger community with two or more generations. South East Asians who came via other countries brought with them the influence and culture of those countries.

Some South East Asians have now been in Britain for 50–60 years: some were born in South East Asia, some in other countries and some in the UK. Other groups have arrived in Britain more recently, perhaps in the last decade, either alone or with families, as highly skilled professionals: for example, doctors, computer consultants, bankers and teachers.

Chinese people first came to England in the 1880s and in the early 1900s to work as seamen. After the Second World War, there was another influx from other parts of Asia, particularly students and professionals. Again, in the 1960s and 1970s, Chinese people came from Hong Kong to work in catering. People came from Vietnam, Laos and Cambodia in the 1970s and ’80s as refugees from their war-torn countries. Many refugees have language needs as they are either unable to speak English or lack confidence in doing so. In 1995 a social worker for the Deptford Vietnamese Health Project reported that ’language is the biggest barrier for Vietnamese women’.

After the Second World War the British government invited people from Caribbean countries to come to Britain to work, particularly in public transport and the health service. The first wave began to arrive in 1948 and a second wave followed in the 1960s. The Black Caribbean people spoke English, and some of the first generation also spoke Creole or patois, which is still commonly spoken.

Ugandan Asians came to Britain mainly in the 1970s. Black Africans arrived in Britain in the 1980s, often as seamen, and in the 1990s they came from diverse countries, especially West, East and Southern Africa, speaking English and an African language. People who came from the Congo, Rwanda and Cameroon spoke French as well as their native languages. Some were professionals, some students and others were neither. People from Zimbabwe arrived from 1999 onwards due to political unrest. People from Somalia started to arrive in the late 1980s and 1990s, speaking Somali and Eritrean.

All of this illustrates the variety and complexity of influences which may have shaped the expectations, skills and abilities of these diverse communities and helps to explain why so little is actually known about the cultural influences that have formed the understanding of cancer and health issues in many communities.

Language barriers

Inability to speak English can be an added barrier and stigma that makes it less likely that patients will seek medical advice. Patients whose first language is not English are often marginalised. They tend to receive little or no information in their own language and the language barrier, coupled with cultural and religious beliefs, can prevent patients taking an active part in decision-making about their treatment or discussing their worries.

Social and religious taboos

Women from some cultures may conceal the symptoms of breast, cervical and ovarian cancers because in their communities it is taboo to talk about sexual organs. These women may report problems to a doctor only when it is too late for them to be given life-saving treatment.

Nursing Times (1995) reported a case where an Asian woman’s daughters avoided using the word ’cancer’ because they considered the word and the subject taboo – it simply could not be mentioned or discussed.

Social and religious taboos within the Asian community are often barriers to the uptake of cancer screening.

Similarly, women from some cultures will not want men to be present during a discussion of women’s cancers – and vice versa. The imparting of cancer information needs to take place in an environment sympathetic to the social and cultural sensitivities of the community.

Social and religious attitudes to cancer

The attitude towards cancer is often different in second- and third-generation community members who have been brought up in Britain. They can be more open and frank and will encourage elders to be the same, although often without much success. However, there are still people in this category with similar views to those of the older generation – often because of the way they see their own community. They feel they cannot trust people and will be judged.

Hindus and Sikhs believe in the theory of karma and may feel, when they contract a serious illness, that they are being punished for wrong-doings in this and their previous lives. This often means that they will accept their illness and work through it with the aim of clearing all their bad karma so their soul may go to a better, peaceful place. Faith will often help believers to get through their journey.

In the Muslim faith, too, an illness such as cancer is often seen as a punishment, but strong followers of Islam may perceive the illness to be a way of washing their sins away and believe it should be accepted as the will of Allah.

Many people diagnosed with an incurable illness choose to go on a last pilgrimage and visit holy shrines, or decide to return to their country of origin to die.

Reasons for not accessing services

Social and religious taboos, inability to speak the language, cultural issues and increased fear resulting from negative experiences have been some of the reasons why BME community members do not access services. Additionally, service providers often lack sensitivity and may have very few links with the community. Every culture views cancer and its journey to death in its own way and misconceptions within each culture about different treatments and fears are often deep-rooted.

People from BME communities feel that lack of culturally sensitive information and resources in appropriate places, and inappropriate media or formats, are major barriers to accessing information. Lack of bi-lingual specialist professionals and patchy provision of NHS interpreting services also hinders uptake of services. Also, many commonly used terms in the cancer field – palliative care, hospice, Macmillan, Marie Curie and so on – are unfamiliar to BME community members.

While it is difficult to find UK studies on incidence in cancer among BME communities, patterns of cancer incidence and presentation differ between communities and according to countries of origin.

Incidence rates for lung cancers amongst Asian people are much lower than for the rest of the UK population but it is still the most common cancer among Asian men and the second most common for women (Cancer Research Campaign, 1997: Cancer and minority ethnic groups, England and Wales, Factsheet 8.2). Mortality rates for cervical cancer appear to be higher in women of Caribbean and Irish origin. There are also higher levels of oral cancers in people of African and South Asian origin (Smaje, 1995). Men of African descent have the highest rate of prostate cancer in the world (Cancer Research UK).

The British Asian community is already showing a substantially greater increase in the incidence of breast cancer than has been found among people living on the Indian subcontinent (Centre for Research in Primary Care, University of Leeds).

Recent research shows that breast cancer is still the most common cancer among South Asian migrants (I dos Santos Silva, 2003).

Asians also have higher incidence of oral cavity and pharyngeal cancers than other BME groups. Associations can be seen within these communities between oral cancers and the use of betel and other oral tobacco products.

Sargent Cancer Care published a report in 2001 summarising research which found that there seem to be increased rates of some childhood cancers within certain BME communities, which has implications for the planning of support services.
Anecdotally, judging from the experience reported by the projects that have contributed to this paper, it seems that there may be an increasing incidence of oesophageal cancer and ovarian cancer in the Asian community

The number of people from BME communities that are being diagnosed with cancer is rising significantly. The Turkish charity Pro Cancer Research Fund reported a rise in breast cancer in the under-40s. For this community, breast cancer is a comparatively new experience, because until recently the predominant health disorders were stroke, heart attacks and diabetes; cancer and other hidden conditions may mask some of the symptoms of these other disorders. This has also been the case within other BME communities, especially Asian and African Caribbean, where stroke, heart disease and diabetes are the predominant health disorders.

Cancers related to HIV carry their own stigma and taboos, and the HIV aspects within BME communities need to be understood.

However, another report observes that ’despite the growing data on cancer among many ethnic groups, little or no data is available for several minority ethnic groups in the UK, including Chinese, Arabic, Turkish, Greek and new migrant groups’ (Rawaf, 1996). Current work focuses little attention on the needs of Greek, Turkish, Vietnamese and Arabic people.

Nationally, information on cancer issues for BME communities has been developing with the introduction of breast and cervical screening programmes since the late 1980s. Apart from the work of the two main national organisations, Cancerlink and Women’s National Cancer Control Campaign (WNCCC), very little was done among BME communities. Cancerlink, a service funded by the DoH and subsequently merged with Macmillan, offered a telephone helpline and cancer awareness and screening among the Asian communities in Hindi and Bengali; it also produced general information on cancer in six languages, including audiotape format. All these services ceased in 2001. The WNCCC offered screening advice and a mobile cervical-screening service, which also ceased in 2001. The projects were funded only for a set term. Cancer Black Care, set up in 1995, offers services that specifically target BME communities and has produced some resources in cancer in languages other than English.

Until recently little attempt has been made to meet the information needs relating to diagnosis, treatment, palliative care and methods of pain relief. This is partly a reflection of known or reported low mortality rates from cancer in BME communities, but is also linked to the stigma associated with the disease and the lack of culturally sensitive information available for patients. It is only since 2000–1 that more general resources have been available. Cancer Black Care produced in 2001 Cancer Awareness Reaching Everyone, a training pack for health professionals, along with leaflets on prostate cancer in other languages.

The problem does not stop with a lack of good-quality health information provided specifically for BME communities. Much health information and advice that is available in English is inappropriate for people from minority ethnic communities. It may not make sense to them, or it might be impossible to follow. For example, in many cultures a vegetarian diet is followed, so advising people from these backgrounds to eat red meat if they are anaemic would be completely inappropriate. Similarly, as Mark RD Johnson, Professor of Diversity in Health and Social Care at the Mary Seacole Centre, De Montfort University, has observed, advising people to give up alcohol or tobacco would seem patronising and insensitive to those from cultures where the use of these substances is strictly forbidden.

Problems also exist within other primary sources of information, including television, radio and newspapers. The majority of health information programmes aimed at BME communities are made overseas and do not reflect the cancer service provision in the UK. However, in the UK both national and local radio stations are slowly beginning to pick up on and address health issues relevant to minority ethnic communities. There is clearly a need to develop programmes, as well as to educate and empower the communities to develop expertise in addressing the issues.

The DoH and the NHS trusts have been very slow to prioritise their responses to the needs of BME communities. National programmes for delivering information to these communities are urgently required, as well as schemes for educating and empowering the communities themselves.

One of the purposes of this publication is to report exactly what cancer information is available for BME communities and in what medium or format it is being offered. This, it is hoped, will assist in both the future production of culturally sensitive and linguistically appropriate cancer information and also in research into cancers affecting BME communities. The report also takes into account the fact that few resources are available to researchers to help them understand BME communities – such as information about lifestyles, people’s knowledge of service availability, disease patterns and recent cancer mortality rates.

The work presently being conducted by the 55–60 projects within the BME community could potentially provide much of this, as long as it is well documented and presented.

Lee and Papadopoulos (2000) found many studies looking at cancer in men. However, very few looked specifically at men who are migrants or descendants of migrants. The studies highlighted the lack of research information available about these groups. They identified specifically a lack of qualitative information, which could help to provide insight into ethnic and cultural factors relating to incidence, prevention, treatment and outcome in terms of quality of life and survival.

A study carried out at St Bartholomew’s Hospital Cancer Centre to assess the efficiency of bilingual health advocacy for cancer patients from ethnic minorities found that there are measurable benefits from providing tailored information and support to meet local community needs (V Thomas, 2000).

Research into the provision of services for BME communities identified a number of factors that contribute to a perceived low take-up of services (Hill and Penso, 1995). A strategy to promote ethnic and racial sensitivity in palliative care service delivery and policies to improve access to, and take-up of, services was recommended.