Seeing cancer from a cultural perspective
Black and minority ethnic people are at risk of delayed cancer diagnoses because of language barriers and the social stigma attached to cancer in some communities. Nurses can help by acting as advocates for patients, and by being aware of the risks for different ethnic groups.
‘The woman had a daughter who was married. But her son-in-law’s family believed that, as a result of the mother’s cancer, the daughter could not have children because they might have cancer too. It was very difficult.’
The couple’s marriage eventually broke down. It is this sort of situation that led Ms Sethi, herself a breast cancer survivor, to start the first Macmillan Cancer Support group for minority ethnic women just over a decade ago.
‘When I was diagnosed, I did not know how the NHS worked,’ Ms Sethi says. ‘Luckily I had friends in medical care and my husband was a research chemist, so I had support. But when I was having chemotherapy I would see other Asian women who did not know what was happening to them. There were problems with language and fear of the unknown – even when people explain it, it is still a trauma.’
The support group Ms Sethi started meets once a month in Southall, an area in London with a large south Asian population. But the women in this group are not alone in finding that their ethnicity has a negative impact on their cancer journey.
Nursing Standard has highlighted research showing that black men have a much higher risk of developing and dying from prostate cancer than white men, who, in turn, have a higher risk than Asian men. There is a similar story for some other cancers (see
Cancer awareness and help-seeking behaviours are low across all BME groups.
Uptake of cancer screening invitations is lower among BME groups than among the white population.
People from Asian and mixed communities are 20-60% less likely than the white population to develop cancer overall. However while the risk of cancer in black men is comparable to that in white men, black men are around twice as likely to develop prostate cancer. In England, Asian people are between 1.5 and three times more likely to develop liver cancer than white people, and black and Asian women aged 65 and over are at higher risk of cervical cancer than white women.
Deaths from breast cancer among west African women living in England and Wales are 30% higher than the average for the two countries.
People from BME groups are less likely to participate in clinical trials. Barriers to participation include fear and cancer stigma, lack of knowledge and mistrust of the medical system.
There is low uptake of palliative and end of life care among BME groups
Head of inclusion at Macmillan Cancer Support Jagtar Dhanda says there are issues affecting people from black and minority ethnic (BME) groups along the cancer pathway. ‘There are challenges around diagnosis; sometimes there is low awareness, and it can take longer to get a referral to specialist services. We also know that people from BME communities report a worse experience at all stages.’
The reasons for this are complex, he says. ‘But there is certainly a case for raising awareness about cancer in BME communities and encouraging people to seek help.’
Nurses can help by acting as advocates for patients, and they should also be aware of specific cancer risks for different ethnic groups, he says. ‘Black and Asian women over 65 are at higher risk of cervical cancer, for example, and breast cancer deaths in women from west Africa living in the UK are 30% higher.’
Mr Dhanda believes that reliable evidence about what is happening to BME people and why is essential. Nurses, therefore, must encourage patients from BME communities to take part in surveys and give feedback on their experiences, so that services have the information they need to respond.
‘We want people to understand the value of filling in surveys,’ he says, adding that he would also like a greater focus on improving the quality of information on ethnicity collected by health services.
‘Specialist nurses do a great job, particularly in signposting to other services,’ he says. ‘They are in a position to build trust with patients – and can provide information about things such as financial support.’
Anecdotal evidence suggests that some of the issues around delayed diagnosis stem from a lack of knowledge and awareness that cancer can often be treated successfully.
But it can be hard to get these messages across through traditional methods, such as leaflets in health centres, so Breast Cancer Care has been running bus roadshows to reach communities with lower rates of breast awareness, including those from BME populations.
‘More than half (56%) of BME women do not check their breasts for changes because they are unsure of what to look for, and nearly half (45%) those of screening age have not attended a screening appointment,’ says Grete Brauten-Smith, clinical nurse specialist with the charity. ‘That means BME women are being diagnosed at a later stage and are less likely to survive.’
Services should be more sensitive to cultural issues, she says, pointing out that Breast Cancer Care’s resources are available in different languages. ‘It is important to make nurses aware of that so they can direct patients to us,’ she says.
It is important, too, to avoid stereotyping. ‘Often what comes across is a reluctance to raise the issue of cancer in families and communities, but everyone is an individual,’ she says.
Ms Sethi adds that things are beginning to change for the better. She recalls another woman who, when diagnosed with breast cancer, offered to call off her impending wedding – but the groom wouldn’t hear of it. ‘I think younger people have different attitudes,’ she says. ‘There is hope’.