Cancer symptom awareness among South Asian communities: Qualitative research
Summary of findings
Stage One Summary and Recommendations Description of participants Few of the participants spoke fluent English and most relied heavily on their grown up children for advice and support. Those aged fifty to sixty were often more active, going out to visit friends, for walks, shopping or to collect children from school. Older women spent much of their time at home, watching Asian television channels, engaged in family activities, praying or reading the Koran. Older men had a wider range of social activities, including visiting community centres, mosques, etc. There were significant differences within the sample, by age, sex and ethnic group. We have divided the target audience into three groups, based on their levels of knowledge and attitudes towards cancer: • The Knowledgeable and Open were the best informed about cancer and the most open to messages about the importance of early diagnosis. In our sample, these were mainly Indian people. • The Uncertain but Open were reasonably well informed about cancer and its symptoms and were open to messages about cancer. Whilst they were not necessarily aware of all the symptoms, they welcomed information on this topic. These were mainly Pakistani people. • The Fearful and Rejecting were the least well informed and the most fearful about cancer. They were rarely aware that cancer could be treated and were uneasy discussing the topic. There was a strong fear of cancer and a belief that it lead quickly to death. In our sample, these were mainly Bangladeshi people. Reactions to the early symptoms of cancer Awareness of the symptoms of cancer was low among the fifty to eight-five year olds. When presented with a list of symptoms, only breast cancer was commonly identified. Interestingly, many participants thought that cancer did not have easily recognisible symptoms in its early stages. It was seen as a disease which grew inside people unnoticed, and only caused symptoms when it was at an advanced stage. People assumed that the symptoms would then be severe, eg, severe pain, coughing blood. Barriers to seeking early medical advice A key barrier was low awareness of the symptoms of cancer. This was combined with a belief that cancer was not treatable, as well as a strong fear of discussing the issue of cancer. Awareness of treatments and the possibility of surviving cancer was low. Among some older and more traditional Muslims, there was also an element of fatalism in their attitude towards cancer and death. In their view, it was in Allah’s hands whether they lived or died. Another strong barrier to seeing a GP was the belief that the GP would not take their symptoms seriously. All our participants were seeing Asian GPs and therefore language was not a barrier to communicating with the GP. Female participants preferred to see a female GP if they wanted to discuss issues related to sexual health (eg cervical screening) or breast screening. They said that female doctors were usually available and this was not a problem. Other primary care services Bangladeshi participants made extensive use of walk-in centres. Pharmacists were rarely seen as a source of advice regarding cancer, although they might discuss minor ailments. The practice nurse at the GP surgery was also a possible source of health advice, and participants often visited the nurse for matters such as blood tests. However, they rarely thought the nurse would have sufficient expertise to diagnose an illness such as cancer. Alternative sources of medical advice There were some mentions of traditional healers and faith healers, mainly among the older Bangladeshi women. These might offer traditional herbal remedies or recommend specific prayers or rituals to cure ailments. These were usually resorted to only for chronic long term complaints which were not cured by more conventional medical treatment. Many of those aged over 60 relied on their (grown up) children for advice on health matters. For more sensitive matters (eg, breast cancer, bowel complaints), men would prefer to speak to their sons, and women to their daughters. Older men said that for chronic health problems, or complaints which were worrying them, they might also ask advice from the elders of the community at the mosque. Although these individuals did not have medical skills, they were thought to be wise people who could recommend the right course of action if an individual was troubled by symptoms and did not know what to do. STAGE ONE RECOMMENDATIONS Messages Of the messages which we showed people, the following had the greatest impact: • Cancer can be treated and is not a “death sentence”. • You do not have to be afraid of cancer – doctors can help you; • Early diagnosis is important to improve your chances of survival; • Your GP will take your symptoms seriously; • You can also visit other health services, eg, walk-in centres, as well as your GP surgery. The one negatively focused message which we showed people was “if you delay visiting your doctor, your changes of survival are not as good.” This was less effective at prompting people to seek medical advice, as it merely reinforced their existing fears. After communicating this topline message, it would then be crucial to inform people of the symptoms of cancer, and the idea that the symptoms would not necessarily be severe. In terms of segmentation, the message of reassurance would be most important for Bangladeshis, and older people. They might require a two stage campaign, first focusing on reassurance and removing fear, and then on symptoms and seeking medical help. Younger people, Indians and Pakistani men might be ready to hear the message about symptoms and early presentation without the need for strong messages on reassurance first. It was also suggested that some sort of religious angle on the messaging for Muslims might work well, especially if the communication was taking place in the mosque. This might be along the lines of “Allah has given us responsibility to look after ourselves/ our health, therefore you should get yourself checked.” Service provision It would be important to address people’s lack of confidence or satisfaction with GP surgeries in any communication. This might mean providing information about alternative health providers, such as the practice nurse, walk-in centres, or dedicated mobile units. Currently, community members believed that such symptoms would not be taken seriously or fully investigated at GP surgeries. If this is the case, then a communications campaign might raise concerns which were not properly addressed. Media Using Asian media and Asian languages will be essential to communicate with these audiences. Translated materials in Mother Tongue (Urdu, Bengali/Sylheti and Gujarati) would be helpful for men, who were more likely to be literate in their own language. However, visual images will be very important to communicate with women and older participants, and written materials alone will have limited impact. Case studies of survivors of cancer from the Asian communities would have a strong impact, as currently most people assumed a diagnosis of cancer was followed rapidly by death. Outreach and intermediaries In addition to direct communication to the target audience, it would be useful to consider developing a secondary campaign targeting the younger generations, encouraging them to inform their parents about the symptoms of cancer and to get checked out if necessary. Working with various community partners to get across the message would also be effective. Stage Two Summary and Recommendations Reactions to the campaign ideas South Asian people welcomed the idea of a communications campaign to inform them about the symptoms of cancer. The campaign ideas were developed in TV, radio, press and poster executions, to test how well they worked across different media. Reactions to the three routes developed were as follows: o Real Life Stories was the most effective route, because it provided a positive, encouraging message about cancer, and reassured people that treatments were available. It was successful because it showed the entire “cancer journey”, from first symptoms, through diagnosis and treatment, to recovery; o Do it for Me had potential, but was not as powerful. The family focus and involvement of younger generations in the executions was credible and resonated well with community members. However, the core idea was not always understood and it was less effective because it did not emphasise the possibility of treatment; o Spotting Cancer Early was not effective. It was confusing, visually unappealing, and unlikely to attract attention. The call to action was ineffective because the message was only partially understood. Language and cultural issues The spoken language used in the radio and TV adverts was intended to be Hindustani, widely understood across the Indian sub-continent. However, participants described the language used as a pure, academic version of Hindi. There were many words which were unfamiliar to participants, and Bangladeshi people in particular found it difficult to understand. The written translations were also described as too complex and academic. There were also many cultural insensitivities in the detail of the scenarios, such as: a Muslim woman in short sleeves in a mosque environment; a child talking to her aunt about breast cancer; a father discusses bowel cancer in front of his family; and a scene where a man discusses bowel cancer with a female GP. In real life, people suggested, these scenes would be unlikely to occur, and in the communications they could detract from the key message and even cause offence. Media and imagery South Asian TV channels are likely to be effective for messages targeting these communities. Low literacy levels mean that press would be likely to have limited impact, and participants did not appear to listen to many Asian radio stations The use of the NHS logo added credibility and authority to the adverts, and made it more likely that people would act on the information received. STAGE TWO RECOMMENDATIONS Executional detail Real Life Stories was the most effective route and should be developed as preferred option. The positive, encouraging tone and local focus of the scenarios should be maintained. The cultural and linguistic problems outlined need to be corrected. For Bangladeshi people, TV and radio executions should be in Bengali-Sylheti. Hindustani would probably be understable for Indian and Pakistani people, although Gujarati and Urdu might be more effective. All the executions could benefit from being shorter, and the text of the press execution in particular needs reduction. The press and poster executions need a bold headline making clear the subject of the advert. Highlighting positive statistics on survival rates could be a good way to catch people’s attention in the press executions. Delivering the campaign Although we did not explore delivery of the campaign in this research, several points nevertheless appear worth highlighting: o Liaison with GP surgeries will be essential to avoid raising fears which are not addressed; o Outreach work in the community will help maximise impact; o Community and media partnerships could capitalise on the impact of any advertising; o Community partners might need other materials to promote awareness, eg, leaflets, DVDs, website; o Visual imagery to explain the cancers and symptoms would be useful.
The research was conducted in two stages, as follows: 1. Stage one comprised strategic research into attitudes and beliefs about cancer among Indian, Pakistani and Bangladeshi people aged fifty to eighty. 2. Stage Two comprised creative development research, exploring the potential of different communications approaches to engage and motivate the Asian communities. Specific objectives for each stage were: Stage One: strategic research • To understand the target audiences in terms of attitudes, beliefs and behaviour with regard to cancer, and identify any segments (attitudinal, ethnic or demographic) within the broader “south Asian” audience; • To explore what action people would take if they had the early symptoms of cancer (persistent cough, lumps, bleeding from the rectum); • To identify informal sources of advice and influencers regarding cancer; • To understand barriers to seeking early diagnosis and explore what would motivate people to see a health professional earlier; • To explore the importance and impact of the gender of the health professional; • To test out propositions or ideas designed to engage with the Asian communities on this topic; • To generate insights to guide the development of stimulus and creative material to be tested in Stage Two. Stage Two: creative development research • To gain reactions to the creative ideas developed after Stage One of the research; • To explore their impact, relevance and the key messages taken out by community members, including older people and the younger generations; • To assess their effectiveness in prompting people to seek earlier diagnosis
Cancer survival rates in England are lower than in the rest of Europe, and it has been suggested that late presentation to health professionals may be one of the reasons for this. Incidence and mortality rates from cancer are higher in the Greater Manchester and Cheshire area than in England overall. The Department of Health believes that improving early diagnosis is a key priority in order to reduce the number of deaths from cancer. There may be a number of reasons why people present late to health professionals, including low awareness of symptoms, poor access to GPs, and fear of the consequences of cancer. As a response to the need to improve awareness and early diagnosis of cancer, the social marketing campaign “Don’t be a Cancer Chancer” has been developed and used in various areas in and around Manchester. The campaign takes a social marketing approach and includes: • Adverts and posters on billboards and local transport; • Leaflets delivered door to door; • A website; • A distinctive “Don’t be a Cancer Chancer” bus offering advice on health matters; • Local press and radio coverage. The campaign targeted people aged over fifty and from the lower socio-economic groups, as morbidity and mortality rates are higher in deprived areas. Reactions to the campaign have been positive, and initial research suggests it is effective. However, the campaign has performed less well has been among the South Asian communities, who form a significant part of the population in the target areas. An evaluation conducted in 2007 found a number of reasons for this, including: • The colloquial language used in the campaign was not well understood by the target audience; • The key message of early diagnosis was not communicated clearly; • The humorous tone was seen as inappropriate to a serious subject; • The abstract images and cartoons distracted from the message; • The materials would need to be produced in Asian languages to be accessible to the target audience. In the light of this, it was decided that the “Don’t be a Cancer Chancer” campaign cannot be easily adapted to meet the needs of the South Asian communities. A specific south Asian campaign, with a different approach, is likely to be required. The current research was therefore commissioned by Greater Manchester Public Health Network to inform the development of a campaign specifically targeting the South Asian communities.
A key barrier to seeking medical advice among South Asian people was low awareness of the symptoms of cancer, combined with a belief that cancer is not treatable. There is also a lack of confidence in GP’s. Of the messages that were shown to people, the following had the greatest impact: • Cancer can be treated and is not a “death sentence”. • You do not have to be afraid of cancer – doctors can help you; • Early diagnosis is important to improve your chances of survival; • Your GP will take your symptoms seriously; • You can also visit other health services, eg, walk-in centres, as well as your GP surgery. South Asian people welcomed the idea of a communications campaign to inform them about the symptoms of cancer.
Indian, Pakistani and Bangladeshi
Qualitative methods were selected as most appropriate for this research project. Qualitative approaches allowed sensitive issues to be explored in depth and are best suited for gaining reactions to creative materials and generating new ideas. The following approaches were used: • Paired friendship interviews, lasting around an hour, provided the opportunity for detailed individual exploration, within a supportive context and with the opportunity for sharing experiences. These were used for Stage One. Two participants we recruited who shared the same characteristics and who knew each other, as this helped them to feel more at ease during the research interview. Individual depth interviews would not be suitable at Stage One because people might feel under pressure or intimidated by a one-to-one interview. • Mini-group discussions, including four to six participants and lasting up to 1.5 hours, provided the benefits of a creative group process, in an intimate and informal environment. These were used for Stage Two of the project. Smaller groups were more suitable than full size focus groups, to allow everyone to have sufficient time to absorb and respond to the creative materials being tested. • Individual interviews were most useful for gaining detailed reactions to communications materials, as they can account for different reading speeds and time taken to digest the information. These were used in Stage Two to supplement the findings from the mini-groups
Data collection methodology
Stage 1 = 16 paired depths with the core target. Stage 2 = 6 mini groups and 4 individual depth interviews with the core sample and 4 mini groups and 4 depths with the younger generation sample
Feb - July 2010