Raising cancer awareness in minority ethnic groups
A pilot campaign used a targeted approach to raise awareness about cancer and increase screening uptake among black and minority ethnic communities.
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In this article
- Incidence of specific cancers in BME groups
- A pilot campaign to raise awareness and screening uptake
- The nurse’s role in reducing health inequalities
Paula Lloyd Knight is associate director for patient experience and BME cancer programme lead for the National Cancer Action Team.
Lloyd Knight P (2012) Raising cancer awareness in minority ethnic groups. Nursing Times; 108: 38, 17-19.
Awareness of cancer and uptake of screening is lower among some black and minority ethnic groups than in the white British population, yet incidence of some cancers is higher. The National Cancer Action Team has set up a pilot with a number of BME communities to improve screening uptake and understanding of early signs and symptoms of cancer by increasing cancer awareness and dispelling myths and misconceptions.
Keywords: Cancer awareness/BME/Health inequalities
- This article has been double-blind peer reviewed
- Figures and tables can be seen in the attached print-friendly PDF file of the complete article in the ‘Files’ section ofthis page
5 key points
- People from black and minority ethnic communities generally have lower levels of cancer than the white British population
- BME communities have higher incidence of cervical, stomach, liver and prostate cancer than that of the white British population
- BME women have lower awareness of early signs and symptoms of breast and cervical cancer than white British women
- Take-up of breast and cervical screening is lower among women from BME groups
- A dedicated campaign is aiming to raise awareness, increase screening uptake and challenge the myths and misconceptions about cancer that are held in some BME communities
Until recently little national data existed in England on the ethnicity of people with cancer. This made it difficult to understand the burden of incidence on different ethnic groups and to assess the impact of interventions on black and minority ethnic (BME) groups. In 2009, the National Cancer Intelligence Network published a report on cancer incidence and survival by major ethnic group (NCIN, 2009); this identified that although, generally, incidence levels of cancer were lower for BME groups than their white British counterparts, for certain cancers in some groups, rates were higher:
- Stomach cancer is around 50% higher in Africans and African-Caribbeans;
- Liver cancer is around twice as high in Africans, African-Caribbeans and Asians;
- Myeloma is around twice as high in Africans and African- Caribbeans;
- Mouth cancer is around 50% higher in Asian females and around twice as high in Asian women aged over 65;
- Cervical cancer is around twice as high in Asian females aged over 65.
In addition, Prostate Cancer UK identified that the incidence of prostate cancer is three times higher in African and African-Caribbean men.
Research has identified that people from BME communities are less likely to accept invitations to attend cancer screening programmes (Moser et al, 2009) and more likely to have lower awareness of the early signs and symptoms of breast cancer (Wood and Scanlon, 2005) and cervical cancer (Jo’s Cervical Cancer Trust, 2011). The reasons for this are multifaceted and differ between ethnic groups, genders and ages, and more research is needed. However, the impact of lower uptake and awareness is similar: BME groups are more likely to present later with symptoms, which may be more advanced. This can perpetuate cultural and religious myths that exist around cancer being a “death sentence”.
This article outlines the National Cancer Action Team’s (NCAT’s) targeted approach to increasing cancer awareness among BME communities, and challenges a number of myths about cancer held within these communities.
Working with BME communities
NCAT has developed a pilot to target key BME communities through tailored messages and interventions. The Cancer Does Not Discriminate campaign seeks to:
- Improve understanding of the early signs and symptoms of breast, bowel, cervical, mouth, myeloma, lung and prostate cancer;
- Dispel myths and misconceptions about cancer held, in particular, by Irish, South East Asian, African and African-Caribbean communities;
- Provide positive examples of people from BME communities living with and surviving cancer.
We adopted a mixed-methodological approach that is sensitive to the diverse cultural and religious beliefs of communities being targeted. All methods used were developed with help and support from BME charities and organisations, cancer-specific charities and the commercial sector.
Commercial radio. The Spectrum Radio Network (a multi-ethnic foreign-language station) teamed up with NCAT to develop a programme that trains radio show hosts to become ambassadors in their respective communities. This approach is being tested with the Bangladeshi and Ghanaian communities. Each presenter interviews health professionals, faith leaders and patients to provide targeted information and challenge some of the myths held about cancer in their respective communities. Ambassadors also attend events where they signpost people to appropriate information, advice and services.
Targeted and tailored information. Supported by more than 20 charity contributors, patients and celebrities, NCAT has developed health newspapers specifically for the Irish, South East Asian and African and African-Caribbean communities. These provide key messages on early signs of cancer, challenge myths and provide culturally appropriate screening information and positive stories of people living with cancer.
Direct awareness. NCAT, its charity partners and BME organisations use a face-to-face approach to take key messages to different communities. To date, more than 27,000 health-awareness information bags have been handed out; tailored by gender and ethnicity, these contain information on prostate awareness, bowel-cancer screening, diet and nutrition, the five-point breast code, what females should know and where to access appropriate information in other languages, along with wristbands and pens. In addition to information bags, 200,000 health newspapers have been handed out at cultural and religious events, festivals, carnivals and through ethnic food shops and libraries.
Religious faith is significant in the lives of many people from BME communities and can be a key vehicle for getting directed messages to them. NCAT and RAFFA (Renewal, Advancement, Financial Freedom, Autonomy - an organisation that facilitates empowerment and reduces inequalities by encouraging enterprise) developed a programme that aims to work in churches and other faith communities to get key screening messages and awareness information to their members. The programme has distributed over 7,000 cancer-awareness bags and delivered workshops at key faith conventions and meetings. It is also training local cancer champions from across a number of faith and church groups, who will deliver awareness workshops within their areas.
Effect of the programme: prostate cancer
With more than 37,000 new cases diagnosed every year in the UK, prostate cancer is the most common cancer in men; those of African and African-Caribbean descent are three times more likely to develop prostate cancer than white men (NCIN, 2009). Targeted messages and resources to raise awareness in men aged over 50 of their entitlement to a free prostate-specific antigen (PSA) test has been a significant part of Prostate Cancer UK’s work. The NCAT campaign has been making this and other tailored information available to wider audiences through churches, faith groups, BME organisations and BME press.
Awareness of the signs of prostate cancer among African and African-Caribbean men is still lower than in white men. Anecdotal reports indicate GPs have refused to give African and African-Caribbean men a PSA test or are unaware of the higher incidence rates in these communities. Myths in the black community about tests for prostate cancer can deter men from coming forward, as can a general lack of awareness. Box 1 (below) gives examples of these men’s experiences of prostate cancer, as captured by the NCAT campaign.
Box 1. Experiences of BME men and Prostate cancer
“I went to the doctor to ask about a PSA test but was told by the GP I was too young to get prostate cancer, it was something men in their 60s and 70s got.”
BME Cancer Voice member diagnosed with prostate cancer, aged 57
“If I had known about black men having a higher risk I would have told my dad to go to the doctor sooner and insisted he send him for some tests.”
Carer of deceased patient with prostate cancer, died aged 51
“I had no idea I had a higher risk, or that the PSA test was just a blood test.”
Cancer-awareness workshop attendee
Implications for nursing practice
The reasons for disparities in awareness and late presentation are multifaceted; however, tales of bad experiences travel fast and there is overwhelming evidence that many BME patients treated in the NHS still report a poorer experience of care than their white British counterparts. National patient surveys up to 2007-08 (Department of Health, 2009) found wide variation across England. BME groups tended to be less positive about questions relating to access and waiting or to information and choice. The report identified differences across all BME groups, with only the white Irish group reporting a positive experience compared with the white British baseline.
BME patients also report poorer experiences of NHS cancer services than white British patients. National cancer patient surveys (DH, 2010; 2000) revealed that longstanding variations in the experiences of BME patients with cancer compared with white British counterparts persist. In the 2010 survey, BME patients reported less-positive experiences than their white British counterparts in 22 out of 67 questions (DH, 2010). A number of those differences related to patient information, communication and after care. The most-recent survey (DH, 2012) repeats earlier findings, with BME patients still reporting a poorer experience than their white British counterparts in the period 2011-12.
Lakhani (2008) identified that BME patients found it difficult to access GP services; there were four main reasons identified for the wide variation:
- Substantial communication problems exist between patients and practices;
- The burden of disease is greater in BME patients, who tend to have a poorer health status;
- The quality of GP services is too variable;
- The expectations of BME patients are different.
Research, patient surveys and anecdotal information all point to communication being a factor in the BME experience of the NHS; this may be compounded by myths and misconceptions held about the NHS within some communities.
Community nurses and those working in primary care are key in addressing these issues. The London Network for Nurses and Midwives (2007) emphasised the importance of “nurses and patients having a shared perception of the quality of care” and suggested nurses could make “simple changes to the way they work so that care matches their own and patients’ expectations”. It suggests nurses and midwives use language that is culturally specific and respects patients’ individuality. This may be as simple as asking their preferred name.
Beliefs and culture may affect people’s perceptions of care, communication, attitudes towards cleanliness and how they experience a service. Feedback from a campaign workshop showed the pain associated with breast screening deterred some BME women from attending further screening. These experiences, coupled with beliefs, can shape patients’ behaviours and affect their perceptions of the NHS.
Taking a personalised approach to care and information provision is one way to ensure all patients’ needs are fully explored and realised. This may raise a number of challenges including access to: culturally sensitive services, such as interpreters trained in medical terminology; culturally appropriate nutritional advice; information in other languages and other formats. Considerations to bear in mind are outlined in Box 2.
Clear protocols, including simple things like explaining the nurse’s role and acknowledging patients’ history and current situation, will help improve relationships and experiences. The LNNM (2007) stresses that services must develop a range of communication approaches that address cultural differences and enhance engagement with patients and their relatives.
Box 2. Working with minority ethnic groups
- Identify who in your organisation already has a relationship with the group and ask them to introduce you. Black and minority ethnic (BME) groups are often approached by different people from the same organisation, which can appear disorganised
- Be clear about what you are trying to achieve and why; be open about the benefits for participants
- Try to engage a range of groups to allow for diverse views/opinions from across the target population
- Be clear about what happens when you have finished your work. Will you leave a legacy?
- What will success look like for you? Will this be the same for the groups with whom you work?
- Have you enough time to do a proper job? If timescales are short groups may feel engagement is tokenistic
- Agree feedback mechanisms to avoid groups feeling nothing has happened. A newsletter may help ensure participants feel their efforts have been worthwhile
- Consider how you can disseminate your results; some BME groups can suffer from research fatigue but someone else may benefit from your findings
- Where possible ensure the work is evaluated - external evaluation is preferable, but a good internal evaluation is better than none at all
The NCAT campaign takes a targeted approach to working with specific BME communities and has developed tailored resources for each community in partnership with organisations and agencies that have close and trusted relationships within them. Interventions used successfully with the white British community have been tailored in a culturally sensitive way to encourage wider participation.
Listening to the experiences and needs of BME groups has enabled the campaign to connect with local groups and organisations that work with, and have direct access to, the targeted groups. Developing partnerships that respect each other’s strengths, abilities and knowledge is helping to build capacity and knowledge in the voluntary sector while leaving a legacy of local champions who will continue to promote cancer-awareness messages.
The pilot is due to end in March 2013 and a report is expected that summer.
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Department of Health (2012) Cancer Patient Experience Survey 2011/12. London: DH.
Department of Health (2010) National Cancer Patient Experience Survey Programme - 2010: National Survey Report. London: DH.
Department of Health (2009) Report on the Self-reported Experience of Patients from Black and Minority Ethnic Groups 2009. London: DH.
Department of Health (2000) National Cancer Patient Survey. London: DH.
Lakhani M (2008) No Patient Left Behind: How Can We Ensure World Class Primary Care for Black and Ethnic Minority People? London: DH.
London Network for Nurses and Midwives (2007) Perceptions of Care: Strategies for Improving the Patient Experience. London: LNNM.
Moser K et al (2009) Inequalities in reported use of breast and cervical screening in Great Britain: analysis of cross sectional survey data. BMJ; 338: b2025.
National Cancer Intelligence Network (2009) Cancer Incidence and Survival by Major Ethnic Group, England, 2002-2006. London: NCIN.
Wood A, Scanlon K (2005) Same Difference: Breast Awareness is for Everyone. London: BCC.