Health Promotion Journal of Australia, 2014, 25, 46–51 http://dx.doi.org/10.1071/HE13095
Health Needs and Behaviours
Knowledge, attitudes and beliefs about lung cancer in three culturally and linguistically diverse communities living in Australia: a qualitative study Nicola Scott A,D,E, Connie Donato-Hunt B, Melanie Crane C, Mayanne Lafontaine C, Megan Varlow C, Holly Seale D and David Currow C A
NSW Public Health Officer Training Program, NSW Ministry of Health, NSW 2060, Australia. Cultural and Indigenous Research Centre Australia, NSW 2040, Australia. C Cancer Institute, Eveleigh, NSW 2015, Australia. D School of Public Health and Community Medicine, University of New South Wales, NSW 2052, Australia. E Corresponding author. Email: [email protected] B
Abstract Issue addressed: Knowledge, attitudes and beliefs about lung cancer among Chinese, Vietnamese and Arabic-speaking communities in Sydney, New South Wales (NSW) are explored. Methods: Seven focus groups were completed with a total of 51 participants (smokers and non-smokers) from three culturally and linguistically diverse communities (CALD). Five topics were discussed and translated summaries from focus groups were thematically analysed. Results: There were variations in perceived susceptibility to lung cancer between the CALD groups and between smokers and non-smokers. Fatalistic views towards lung cancer were apparent across all three CALD communities. There were low levels of awareness of lung cancer signs and symptoms, with the exception of haemoptysis. Differences in help-seeking behaviour and levels of trust of general practitioners (GP) were apparent. Conclusion: Limited awareness of the signs and symptoms of lung cancer, combined with cultural perceptions about cancer, impacted on attitudes towards help-seeking behaviour in these three CALD communities. So what? The prevalence of smoking among Chinese men, Vietnamese men and Arabic-speaking communities in NSW puts them at increased risk of lung cancer. Health promotion initiatives for lung cancer should be tailored for CALD communities and could focus on increasing knowledge of key symptoms, awareness that ex-smokers are at risk and awareness of the diagnostic pathway including the importance of avoiding delays in help-seeking.
Received 28 October 2013, accepted 4 January 2014, published online 16 April 2014
Introduction Lung cancer continues to contribute to the global burden of disease and is the fifth most commonly diagnosed cancer in Australia, causing more deaths than any other cancer in both males and females.1 Lung cancer currently accounts for 20% of all cancer deaths in New South Wales (NSW) and has a poor 5-year relative survival rate of 16%.2 In a high proportion of cases, lung cancer is diagnosed at an advanced stage and this is a major contributing factor to the poor survival rate.3 Research has suggested that the time between symptom onset and help-seeking can be potentially long enough to affect prognosis.4 It is likely that awareness of risk factors for, and symptoms consistent with, lung cancer in the community are associated with earlier diagnosis. Key symptoms consistent with lung cancer include (singly Journal compilation Ó Australian Health Promotion Association 2014
or in combination): a new or changed cough; haemoptysis (coughing up blood); chest and/or shoulder pain; shortness of breath; hoarseness; weight loss/loss of appetite; and persisting chest infection.5 NSW is a culturally and linguistically diverse (CALD) state, with 31% of the population being born overseas, and 28% speaking a language other than English at home in 2011.6 Common languages other than English spoken at home in NSW in 2011 were Chinese languages including Mandarin and Cantonese (4%), Arabic (3%) and Vietnamese (1%).6 Tobacco smoking is a major risk factor for lung cancer, responsible for ~90% of lung cancers in males and 65% in females.3 Smoking prevalence of males born in Vietnam, Lebanon and China, and females born in Lebanon, is comparatively higher than in the NSW population.7 Specifically, in 2006–2009, 39% of CSIRO Publishing
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Knowledge of lung cancer in CALD communities
males born in Lebanon, 32% of males born in Vietnam and 20% of males born in China smoked, which are higher than or equal to the 20% of males in NSW who smoked.7 The patterns of female smoking differ, with females born in China and Vietnam having substantially lower rates of smoking than their male counterparts and females in the total NSW population.7,8 Conversely, females born in Lebanon have a smoking prevalence of 29%, higher than the NSW female smoking prevalence of 16%.7 Whilst data on prevalence of lung cancer in these CALD groups is not available, the higher smoking rates put these groups at higher risk of lung cancer and other smoking-related illnesses. While limited, available literature has identified several attitudes regarding cancer among CALD communities in Australia. Collectively these understandings include that cancer is incurable, contagious, pre-destined and a source of shame.9 Perceptions also include that progression of a tumour can be spread by knowledge of cancer and that fear, worry and mental stressors can cause the onset of cancer.9 Studies with Chinese Australians in particular have found that fatalistic attitudes towards cancer are common, with these attitudes affecting help-seeking behaviour such as participation in cancer-screening programs. These studies have also shown high levels of maintenance of traditional beliefs together with acceptance of biomedical explanations about cancer within Chinese Australian communities.10–12 The studies provide insight into Chinese illness conceptualisation that may assist in understanding the influence of culture on access to screening services, communication of diagnosis of cancer and management of treatment regimens.10 Research conducted in the United States (US) with Hispanic and Latino populations has shown that understanding knowledge, attitudes and beliefs in communities is a useful way to develop effective targeted health messages.13 In Australia, little is known about the knowledge, attitudes and beliefs about lung cancer in high-risk populations. This is particularly pertinent given research internationally, which indicates that knowledge of cancer symptoms is lower among migrant populations.14 Research on cancer knowledge in the general community has shown there are high levels of awareness of smoking as a risk factor for lung cancer; however, there is limited awareness of lung-cancer symptoms.15 The present research aimed to explore knowledge, attitudes and beliefs about lung cancer in three CALD communities in NSW. We expected that limited knowledge of lung cancer susceptibility, symptoms and diagnostic pathways would be evident in each of these CALD groups.
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A qualitative study approach was used to explore culturally-specific contexts and perspectives.16,17 Focus groups were conducted for this research because the group interaction encourages participants to explore and clarify individual and shared perspectives on specific issues. The Consolidated Criteria for Reporting Qualitative Research checklist for qualitative research was used to guide analysis and reporting.18 Approval for the research was obtained from the NSW Population & Health Services Research Ethics Committee (HREC/12/ CIPHS/20 and LNR/12/COPHS/29).
Participants Participants were recruited into the study by the Cultural and Indigenous Research Centre Australia (CIRCA). Four experienced bilingual researchers (one researcher per language – Cantonese, Mandarin, Vietnamese and Arabic) – recruited participants through their community networks from suburbs within metropolitan Sydney, reflective of the geographical spread of these language speakers across the city. Eligible participants were adults over the age of 40 who speak Arabic, Mandarin, Cantonese or Vietnamese as their main language at home. Participants were segregated by language group and smoking status. Smokers were defined as those who currently smoke either occasionally or daily and non-smokers were defined as those who have never smoked or were ex-smokers. Due to very low smoking prevalence among Chinese and Vietnamese females,7 the Chinese and Vietnamese smoker groups were all male, while the Arabic-speaking groups contained an even mix of males and females. Potential participants were given verbal and written information about the study in both English and either Chinese, Vietnamese or Arabic, and provided with the opportunity to raise questions. Information about the topic, lung cancer, was not given at the time of recruitment in order not to impact prior knowledge and beliefs. At the start of the focus group, participants were given further opportunity to ask questions before signing a consent form in their preferred language. Participation was voluntary and confidential, and participants were able to withdraw at any time. Counselling was also offered at the end of the focus groups given the sensitive topic of discussion. Participants were reimbursed for their time.
Data collection
Methods
A discussion guide was developed, using relevant literature, by the investigators and was organised into the following five domains: demographic information; stereotypical lung cancer patient; knowledge of lung cancer (susceptibility and signs/symptoms awareness); perceptions and knowledge of diagnosis and treatment; and lung cancer information sources. Focus groups were conducted in Cantonese, Mandarin, Vietnamese or Arabic. Each focus group took ~90 min and was audio recorded.
Design
Data analysis
This paper presents results from the CALD component of a larger study investigating the knowledge, attitudes and beliefs about lung cancer among at-risk segments of the NSW population.
A written record of each focus group was provided by the bilingual researchers in English, translating key quotes to illustrate pertinent points in the data and outlining the discussion according to each
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domain in the discussion guide. In keeping with the strengths of qualitative approaches, analysis was conducted using Strauss and Corbin’s systematic approach.19 Specifically, thematic analysis incorporated initial theoretically sensitive coding, followed by axial coding developing a matrix of themes and sub-themes completed by author 1, verification with secondary coding completed by author 2 and final verification of themes completed by bilingual researchers.
Results Participants In total, seven focus groups were undertaken with Mandarin, Cantonese, Vietnamese and Arabic-speaking individuals living in NSW (n = 51). Participants were aged 44 years and older, and segmented into four groups of current smokers and three of nonsmokers (Table 1). Three groups contained males only given the gender-specific nature of smoking in these communities (Mandarin, Cantonese and Vietnamese-speaking). Four groups included a mixture of males and females (Cantonese, Vietnamese and Arabicspeaking).
Perceived susceptibility Participants accurately reported that a person diagnosed with lung cancer was more likely to be male than female, over 40 years of age and be a regular long-term or heavy smoker. While smoking was the most discussed risk factor, the general concept of risk factors was not clearly understood.
Yesterday, I attended the funeral of a 102 year old man, who smoked like a steam train, and he smoked till the day he died, so not necessarily smokers have higher risks. (Vietnamese smoker) Smoking is one factor but it is not the only factor to develop lung cancer, otherwise everybody who smoked died of lung cancer. (Arabic non-smoker) As well as smoking, other perceived risk factors for lung cancer were suggested, including stress, lifestyle, environmental factors and genetics. Environmental risk factors and agricultural food production Table 1. Profile of focus group participants Language
No. of participants
Gender
Age range (years)
Smoking status
Mandarin Cantonese Cantonese
7 7 6
45–65 44–65 44–64
Smokers Smokers Non-smokers
Vietnamese Vietnamese
8 8
45–65 45–65
Smokers Non-smokers
Arabic
7
45–65
Smokers
Arabic
8
All male All male 3 male 3 female All male 4 male 4 female 4 male 3 female 5 male 3 female
45–65
Non-smokers
were discussed in the Cantonese and Mandarin-speaking smoker groups.
The environment plays a great role in your health, if you are living in a heavily polluted area or your food chains are circulating in a vicious way, you can easily catch the cancer. Even though you pay a lot of attention to your diet, the food you eat daily has been processed with some additives or catalysts, it’s easy to get the cancer. (Mandarinspeaking smoker) It was generally agreed by the Cantonese speakers that a positive outlook and personality could lower risk of lung cancer and affect prognosis.
The patient’s mental health, family support, religious belief, lifestyle and diets would determine the prognosis. (Cantonese-speaking non-smoker) In terms of personal susceptibility, ex-smokers in the non-smoker groups saw themselves as not susceptible to lung cancer, particularly the Cantonese and Vietnamese-speaking non-smoker groups.
We all have stopped smoking for more than 10 years at least. Every 7 years, all the cells in the human body changed completely, so we are practically a non-smoker, because our lungs renewed themselves already, but there may be nicotine stored in our body that hasn’t been cleaned out yet. (Vietnamese-speaking non-smoker) Further, smokers in all three CALD groups were mixed in their views of whether smoking increased their risk of lung cancer; some felt they had no greater risk of lung cancer than ex-smokers or nonsmokers. Some of those in the Arabic-speaking smoking group felt they were not at increased risk compared with non-smokers due to their healthy lifestyle choices being more influential than their smoking or that their bodies were immune. In the Arabicspeaking group, shisha (water pipe) smokers felt they were at lower risk of lung cancer than those who smoked cigarettes, and vice versa for the cigarette smokers. In the Arabic-speaking smoker group there was a sense of denial towards the risk of developing lung cancer, and cancer more generally, as well as the link between smoking and lung cancer.
In order to keep enjoying smoking we block the idea of cancer out of our mind. (Arabic-speaking smoker) Arabic-speaking groups also expressed a cultural perception and stigma towards cancer, whereby the more one talks and thinks about cancer the higher the risk.
If one keeps thinking about it he or she will get this disease....so not thinking about it would be a better way to reduce the risk. (Arabic-speaking non-smoker)
Perceived severity There was some awareness of the importance of early diagnosis of lung cancer (primarily amongst Cantonese-speaking smokers),
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however all groups thought survival rates would be very poor for people with lung cancer. Arabic-speaking smokers generally believed that a person would die six months after diagnosis, and the groups could not recall any cases where lung cancer treatment was successful.
We have been always hearing about people diagnosed with cancer and that they went into treatment and then they died. (Arabic-speaking non-smoker) Cantonese and Vietnamese speakers reported people would not survive more than five years and Mandarin-speaking smokers reported survival would be no more than three years after diagnosis. There was limited knowledge of lung cancer, however generally it was felt diagnosis would occur in a late stage. Further, fatalistic views towards cancer in general were apparent across all three CALD groups.
Cancer has always been a fatal disease for which there is no treatment. Once you get it, you only wait to die. You know, treatment only keeps you alive a little bit longer. (Vietnamese-speaking non-smoker) Some participants in the Chinese and Vietnamese groups felt that the prognosis was more promising with early diagnosis than late diagnosis. Opinion on early diagnosis was also not consistent, as some in the Cantonese non-smoking group thought diagnosis was not possible in the early stages of lung cancer.
Depending on the stage at which people were diagnosed, if they were diagnosed early, the chance of them surviving longer is higher. (Cantonese-speaking smoker) Compared with other illnesses Arabic-speaking smokers felt that cancer was of greater concern as participants believed other diseases could be managed and some cured, whereas cancer could not be.
Cancer is not well understood, while other diseases’ symptoms and diagnosis are well understood. (Arabicspeaking smoker)
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Awareness of signs and symptoms There was a mixed response between the groups regarding awareness of symptoms consistent with lung cancer; the generally agreed consensus for each group is outlined in Table 2. Coughing up blood (haemoptysis) and weight loss was identified by all groups as symptoms that would prompt them to see their general practitioner (GP). Mandarin speakers said they were aware that all symptoms discussed were symptoms of lung cancer, while the Cantonese, Vietnamese and Arabic-speaking groups agreed on fewer symptoms that could be a sign of lung cancer. There were minimal differences in the awareness of key symptoms (haemoptysis, a cough that changes or new cough and persistent cough) between the smoker and non-smoker Cantonese and Vietnamese-speaking groups. Differences were more apparent between the two Arabic-speaking groups. Arabic-speaking smokers were less knowledgeable about symptoms than non-smokers and advised they would not be concerned by a cough that changes/new cough or persistent cough as they were not seen to be symptoms of lung cancer. All groups reported they gained knowledge of lung cancer symptoms from family and friends, as well as gaining information from anti-smoking television advertising, but recognised that their knowledge was limited.
We only know that it is related to coughing blood and it is a deadly disease. (Arabic-speaking smoker) Mandarin-speaking smokers also referred to gaining knowledge of lung cancer from newspapers, magazines, community workshops, health professionals and websites. All participants requested further information, with consensus that telling people the symptoms of lung cancer would encourage community members to take these symptoms more seriously and seek medical help.
Help-seeking behaviour and attitudes towards GP There was a mixed response across the groups regarding which symptoms would prompt participants to visit their GP, and how long
Table 2. Group consensus on lung cancer symptoms, when prompted, by language Symptoms
Mandarin smokers
Cantonese smokers
Cantonese non-smokers
Vietnamese smokers
Vietnamese non-smokers
Arabic smokers
Arabic non-smokers
A cough that changes or a new cough Persistent coughing Wheezing Coughing up blood (haemoptysis) Chest pain Repeated pneumonia or bronchitis Pain in abdomen Loss of appetite Weight loss Fatigue
Yes
No
No
Mixed
Yes
No
No
Yes Yes Yes
Mixed Unsure Yes
Mixed No Yes
Mixed Yes Yes
Yes Yes Yes
No No Yes
Yes No Yes
Yes Yes
No No
No Unsure
No Yes
Mixed Yes
No Yes
No No
Yes Yes Yes Yes
No No Yes No
No No Yes No
No Yes Yes No
No No Yes No
No No Yes No
No Yes Yes No
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they would wait before seeing a GP. Cantonese-speaking smokers reported that they would seek help for symptoms such as persistent cough, but only if it lasted more than 3 months. Vietnamesespeaking smokers and non-smokers reported they would talk to their GP about all of the symptoms. Arabic-speaking smokers and non-smokers reported they would see their GP for a fever, a strange cough, coughing up blood and shortness of breath. The researchers also explored the levels of trust in GP and the ability to direct help-seeking behaviour. In the Chinese and Vietnamese-speaking groups, there was a high level of trust and acceptance of their GP recommendations.
I will put my life in doctor’s hands and listen to what doctors say. (Mandarin-speaking smoker) The Mandarin-speaking group qualified these statements by saying that the needs of patients who were terminally ill should also be respected by doctors and family members, such as when they choose not to proceed with aggressive treatment. The levels of trust in GP and specialists in the Arabic-speaking groups were lower than the other groups. Overall, a greater sense of fear was articulated in the Arabic-speaking groups in relation to help-seeking for health concerns. Participants discussed reluctance to go to the doctor for fear of bad news, particularly if one is referred to a specialist, with associated stress and anxiety when waiting for a diagnosis.
Discussion There was limited understanding of lung cancer across the three CALD communities in this study. This was observed in terms of selfreported assessment of knowledge, as well as participant responses indicating limited understanding. Differences in awareness of the symptoms of lung cancer were apparent in the three CALD communities. Haemoptysis was identified correctly by all groups as a symptom and the Mandarin-speaking group acknowledged that all symptoms discussed were symptoms of lung cancer; however, the Cantonese, Vietnamese and Arabic-speaking groups had limited awareness of signs and symptoms such as a cough that changes, fatigue, abdominal or chest pain and loss of appetite. Previous research has also highlighted low knowledge about symptoms of lung cancer in the general community; less than half of the respondents of a survey of 685 residents in NSW nominated persistent cough as a symptom.15 This indicates that as well as targeted messages for CALD communities on symptom awareness, messages for the general community may also be required. Similarities across the three CALD communities included that knowledge of lung cancer prognosis is worse than for most other cancers, and that there is limited awareness of the importance of avoiding delays in help-seeking following symptom onset. In the Arabic-speaking groups, this is further hampered by fear or mistrust of GP and specialists and fatalistic attitudes towards cancer more
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broadly. Apart from a few participants in the Cantonese-speaking smokers group, there was also limited awareness of the importance of early detection of lung cancer. Another important finding of this research was an inaccurate assessment of lung cancer risk factors that occurred in all three CALD communities. Specifically, smoking as a risk factor was underrecognised across the smoking groups and among ex-smokers in the non-smoker groups. Denial of the link between smoking and lung cancer was particularly evident in the Arabic-speaking smoker group. The under-recognition of smoking as a risk factor is in contrast to the general community; a survey of 685 NSW residents showed that 96% of the respondents agreed that smoking was a risk factor for lung cancer.15 Further investigation is needed on the impact of limited awareness of early-detection and recognition of smoking and lung cancer risk on help-seeking behaviour and lung cancer prevalence among CALD communities. Health inequities between CALD communities and the broader population may be created or sustained by factors such as: the migration and settlement process; the prevalence of smoking and tobacco control in countries of origin; limited access to health services; and communication barriers.9 There is strong evidence that the use of public education mass media campaigns increases the knowledge of the health effects of smoking and encourages quit attempts and thus is a core provision of the World Health Organization’s Framework Convention on Tobacco Control.20 Depending on length of time since migration to Australia, limited tobacco-control initiatives in countries of residency overseas9 may contribute to misunderstandings of lung cancer risks, diagnosis and prognosis, as do culturally-specific contexts such as shisha smoking amongst Arabic-speaking smokers,21 and the higher prevalence of smoking among Vietnamese and Chinese men compared with women.7,8,22 There are several limitations in this research. As this CALD component was part of a larger study about community awareness, data saturation was not achieved within each language group. Detailed demographic information, such as participants’ length of time living in Australia, was not available; this information would have been useful in understanding exposure to public health messages and further contextualising knowledge, attitudes and beliefs about lung cancer. Whilst an enhancement to data quality, the fact that the field work was conducted in languages other than English meant that the authors relied on translated written reports of the group discussions for analysis rather than verbatim transcripts. This limitation was mitigated through the involvement of the bilingual researchers in the coding verification process.
Conclusion The prevalence of smoking among Chinese men, Vietnamese men and Arabic-speaking communities in NSW puts them at increased risk of lung cancer.7,8 This research indicates that within these
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communities, awareness of lung cancer susceptibility, symptoms and diagnostic pathways was limited and influenced by knowledge gained from family, friends, cultural perceptions and anti-smoking television advertising. The findings contribute to research on cancer and CALD communities in NSW, which is currently limited.
6.
7.
8.
The understandings gained from this research can be used to inform appropriate health-promotion initiatives. For instance, tailored messages on lung cancer for each of the three CALD groups should focus on increasing knowledge of key symptoms, increasing awareness that ex-smokers as well as smokers are at risk and increasing awareness of the diagnostic pathway. As GP are crucial to earlier diagnosis of lung cancer, these findings also highlight the importance of cultural competence among health care practitioners and the need to promote the tailoring of health care practice and systems to address the needs of diverse communities.
9.
10.
11.
12.
13.
Acknowledgments We thank the participants of this study. We also thank CIRCA researchers Candy Mok, Kim Pham, Tamim Darwish and Wendy Wang for their contribution in facilitating the focus groups. Dr Holly Seale is supported by an NHMRC Australian-based Public Health Training Fellowship (1012631). This work was completed while Nicola Scott was an employee of the NSW Public Health Officer Training Program, funded by the NSW Ministry of Health, whilst based at the Cancer Institute NSW.
2. 3.
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17. 18.
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Cancer Australia. Lung cancer statistics. 2013. Available from: http://canceraustralia. gov.au/affected-cancer/cancer-types/lung-cancer/lung-cancer-statistics [Verified 7 March 2014]. Tracey E, Kerr T, Dobrovic A, Currow D. Cancer in NSW: incidence and mortality report 2008. Sydney: Cancer Institute NSW; August 2010. Australian Institute of Health and Welfare & Cancer Australia. Lung cancer in Australia: an overview. Cancer series no. 64. Cat. no. CAN 58. Canberra: Australian Institute of Health and Welfare; 2011. Chatwin J, Sanders C. The influence of social factors on help-seeking for people with lung cancer. Eur J Cancer Care (Engl) 2013; 22(6): 709–13. [epub ahead of print] doi:10.1111/ecc.12078 Cancer Australia. Investigating symptoms of lung cancer: a guide for GPs. 2012. Available from: http://canceraustralia.gov.au/publications-and-resources/canceraustralia-publications/investigating-symptoms-lung-cancer-guide-gps [Verified 7 March 2014].
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Australian Bureau of Statistics. 2011 Census community profile, New South Wales. Sydney: Australian Bureau of Statistics; 2012. Available from: http://www. censusdata.abs.gov.au/census_services/getproduct/census/2011/community profile/1 [Verified 7 March 2014]. Department of Health. Report on adult health by country of birth from the New South Wales adult population health survey 2006–2009. Sydney: Centre for Epidemiology and Research; 2012. Donato-Hunt C, Munot S, Copeland J. Alcohol, tobacco and illicit drug use among six culturally diverse communities in Sydney. Drug Alcohol Rev 2012; 31: 881–9. doi:10.1111/j.1465-3362.2012.00417.x Federation of Ethnic Communities’ Councils of Australia. Cancer and culturally and linguistically diverse communities. Canberra: Federation of Ethinic Communities’ Council; 2010. Yeo SS, Meiser B, Barlow-Stewart K, Goldstein D, Tucker K, Eisenbruch M. Understanding community beliefs of Chinese-Australians about cancer: initial insights using an ethnographic approach. Psychooncology 2005; 14: 174–86. doi:10.1002/pon.831 Lui CW, Ip D, Chui WH. Ethnic experience of cancer: a qualitative study of ChineseAustralians in Brisbane, Queensland. Soc Work Health Care 2009; 48: 14–37. doi:10.1080/00981380802440403 Kwok C, Sullivan G. Influence of traditional Chinese beliefs on cancer screening behaviour among Chinese-Australian women. J Adv Nurs 2006; 54: 691–9. doi:10.1111/j.1365-2648.2006.03872.x Cameron KA, Francis L, Wolf MS, Baker DW, Makoul G. Investigating Hispanic/ Latino perceptions about colorectal cancer screening: a community-based approach to effective message design. Patient Educ Couns 2007; 68: 145–52. doi:10.1016/j.pec.2007.04.004 Waller J, Robb K, Stubbings S, Ramirez A, Macleod U, Austoker J, Hiom S, Wardie J. Awareness of cancer symptoms and anticipated help seeking behaviour among ethnic minority groups in England. Br J Cancer 2009; 101: S24–30. doi:10.1038/ sj.bjc.6605387 Paul C, Tzelepis F, Walsh RA, Girgis A, King L, McKenzie J. Has the investment in public cancer education delivered observable changes in knowledge over the past 10 years? Cancer 2003; 97: 2931–9. doi:10.1002/cncr.11393 Greenhalgh T, Robb N, Scambler G. Communicative and strategic action in interpreted consultations in primary health care: a Habermasian perspective. Soc Sci Med 2006; 63: 1170–87. doi:10.1016/j.socscimed.2006.03.033 Britten N. Qualitative research on health communication: what can it contribute? Patient Educ Couns 2011; 82: 384–8. doi:10.1016/j.pec.2010.12.021 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349–57. doi:10.1093/intqhc/mzm042 Corbin J, Strauss A. Basics of qualitative research: techniques and procedures of developing grounded theory 3rd edn. London: Sage Thousand Oaks; 2007. National Cancer Institute. The role of the media in promoting and reducing tobacco use. Tobacco Control Monograph No. 19. Bethesda, MD: U.S. Department of Health and Human Services, National Institutes of Health, National Cancer Institute. NIH Pub. No. 07–6242; June 2008. Akl EA, Gunukula SA, Aleem S, Obeid R, Jaoude PA, Honeine R, et al.. The prevalence of water pipe tobacco smoking among the general and specific populations: a systematic review. BMC Public Health 2011; 11: 244. Smith DR, Wei N, Wang RS. Tobacco smoking habits among Chinese medical students and their need for health promotion initiatives. Health Promot J Austr 2005; 16: 233–5.
www.publish.csiro.au/journals/hpja
Health Needs and Behaviours
Knowledge, attitudes and beliefs about lung cancer in three culturally and linguistically diverse communities living in Australia: a qualitative study Nicola Scott A,D,E, Connie Donato-Hunt B, Melanie Crane C, Mayanne Lafontaine C, Megan Varlow C, Holly Seale D and David Currow C A
NSW Public Health Officer Training Program, NSW Ministry of Health, NSW 2060, Australia. Cultural and Indigenous Research Centre Australia, NSW 2040, Australia. C Cancer Institute, Eveleigh, NSW 2015, Australia. D School of Public Health and Community Medicine, University of New South Wales, NSW 2052, Australia. E Corresponding author. Email: [email protected] B
Abstract Issue addressed: Knowledge, attitudes and beliefs about lung cancer among Chinese, Vietnamese and Arabic-speaking communities in Sydney, New South Wales (NSW) are explored. Methods: Seven focus groups were completed with a total of 51 participants (smokers and non-smokers) from three culturally and linguistically diverse communities (CALD). Five topics were discussed and translated summaries from focus groups were thematically analysed. Results: There were variations in perceived susceptibility to lung cancer between the CALD groups and between smokers and non-smokers. Fatalistic views towards lung cancer were apparent across all three CALD communities. There were low levels of awareness of lung cancer signs and symptoms, with the exception of haemoptysis. Differences in help-seeking behaviour and levels of trust of general practitioners (GP) were apparent. Conclusion: Limited awareness of the signs and symptoms of lung cancer, combined with cultural perceptions about cancer, impacted on attitudes towards help-seeking behaviour in these three CALD communities. So what? The prevalence of smoking among Chinese men, Vietnamese men and Arabic-speaking communities in NSW puts them at increased risk of lung cancer. Health promotion initiatives for lung cancer should be tailored for CALD communities and could focus on increasing knowledge of key symptoms, awareness that ex-smokers are at risk and awareness of the diagnostic pathway including the importance of avoiding delays in help-seeking.
Received 28 October 2013, accepted 4 January 2014, published online 16 April 2014
Introduction Lung cancer continues to contribute to the global burden of disease and is the fifth most commonly diagnosed cancer in Australia, causing more deaths than any other cancer in both males and females.1 Lung cancer currently accounts for 20% of all cancer deaths in New South Wales (NSW) and has a poor 5-year relative survival rate of 16%.2 In a high proportion of cases, lung cancer is diagnosed at an advanced stage and this is a major contributing factor to the poor survival rate.3 Research has suggested that the time between symptom onset and help-seeking can be potentially long enough to affect prognosis.4 It is likely that awareness of risk factors for, and symptoms consistent with, lung cancer in the community are associated with earlier diagnosis. Key symptoms consistent with lung cancer include (singly Journal compilation Ó Australian Health Promotion Association 2014
or in combination): a new or changed cough; haemoptysis (coughing up blood); chest and/or shoulder pain; shortness of breath; hoarseness; weight loss/loss of appetite; and persisting chest infection.5 NSW is a culturally and linguistically diverse (CALD) state, with 31% of the population being born overseas, and 28% speaking a language other than English at home in 2011.6 Common languages other than English spoken at home in NSW in 2011 were Chinese languages including Mandarin and Cantonese (4%), Arabic (3%) and Vietnamese (1%).6 Tobacco smoking is a major risk factor for lung cancer, responsible for ~90% of lung cancers in males and 65% in females.3 Smoking prevalence of males born in Vietnam, Lebanon and China, and females born in Lebanon, is comparatively higher than in the NSW population.7 Specifically, in 2006–2009, 39% of CSIRO Publishing
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males born in Lebanon, 32% of males born in Vietnam and 20% of males born in China smoked, which are higher than or equal to the 20% of males in NSW who smoked.7 The patterns of female smoking differ, with females born in China and Vietnam having substantially lower rates of smoking than their male counterparts and females in the total NSW population.7,8 Conversely, females born in Lebanon have a smoking prevalence of 29%, higher than the NSW female smoking prevalence of 16%.7 Whilst data on prevalence of lung cancer in these CALD groups is not available, the higher smoking rates put these groups at higher risk of lung cancer and other smoking-related illnesses. While limited, available literature has identified several attitudes regarding cancer among CALD communities in Australia. Collectively these understandings include that cancer is incurable, contagious, pre-destined and a source of shame.9 Perceptions also include that progression of a tumour can be spread by knowledge of cancer and that fear, worry and mental stressors can cause the onset of cancer.9 Studies with Chinese Australians in particular have found that fatalistic attitudes towards cancer are common, with these attitudes affecting help-seeking behaviour such as participation in cancer-screening programs. These studies have also shown high levels of maintenance of traditional beliefs together with acceptance of biomedical explanations about cancer within Chinese Australian communities.10–12 The studies provide insight into Chinese illness conceptualisation that may assist in understanding the influence of culture on access to screening services, communication of diagnosis of cancer and management of treatment regimens.10 Research conducted in the United States (US) with Hispanic and Latino populations has shown that understanding knowledge, attitudes and beliefs in communities is a useful way to develop effective targeted health messages.13 In Australia, little is known about the knowledge, attitudes and beliefs about lung cancer in high-risk populations. This is particularly pertinent given research internationally, which indicates that knowledge of cancer symptoms is lower among migrant populations.14 Research on cancer knowledge in the general community has shown there are high levels of awareness of smoking as a risk factor for lung cancer; however, there is limited awareness of lung-cancer symptoms.15 The present research aimed to explore knowledge, attitudes and beliefs about lung cancer in three CALD communities in NSW. We expected that limited knowledge of lung cancer susceptibility, symptoms and diagnostic pathways would be evident in each of these CALD groups.
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A qualitative study approach was used to explore culturally-specific contexts and perspectives.16,17 Focus groups were conducted for this research because the group interaction encourages participants to explore and clarify individual and shared perspectives on specific issues. The Consolidated Criteria for Reporting Qualitative Research checklist for qualitative research was used to guide analysis and reporting.18 Approval for the research was obtained from the NSW Population & Health Services Research Ethics Committee (HREC/12/ CIPHS/20 and LNR/12/COPHS/29).
Participants Participants were recruited into the study by the Cultural and Indigenous Research Centre Australia (CIRCA). Four experienced bilingual researchers (one researcher per language – Cantonese, Mandarin, Vietnamese and Arabic) – recruited participants through their community networks from suburbs within metropolitan Sydney, reflective of the geographical spread of these language speakers across the city. Eligible participants were adults over the age of 40 who speak Arabic, Mandarin, Cantonese or Vietnamese as their main language at home. Participants were segregated by language group and smoking status. Smokers were defined as those who currently smoke either occasionally or daily and non-smokers were defined as those who have never smoked or were ex-smokers. Due to very low smoking prevalence among Chinese and Vietnamese females,7 the Chinese and Vietnamese smoker groups were all male, while the Arabic-speaking groups contained an even mix of males and females. Potential participants were given verbal and written information about the study in both English and either Chinese, Vietnamese or Arabic, and provided with the opportunity to raise questions. Information about the topic, lung cancer, was not given at the time of recruitment in order not to impact prior knowledge and beliefs. At the start of the focus group, participants were given further opportunity to ask questions before signing a consent form in their preferred language. Participation was voluntary and confidential, and participants were able to withdraw at any time. Counselling was also offered at the end of the focus groups given the sensitive topic of discussion. Participants were reimbursed for their time.
Data collection
Methods
A discussion guide was developed, using relevant literature, by the investigators and was organised into the following five domains: demographic information; stereotypical lung cancer patient; knowledge of lung cancer (susceptibility and signs/symptoms awareness); perceptions and knowledge of diagnosis and treatment; and lung cancer information sources. Focus groups were conducted in Cantonese, Mandarin, Vietnamese or Arabic. Each focus group took ~90 min and was audio recorded.
Design
Data analysis
This paper presents results from the CALD component of a larger study investigating the knowledge, attitudes and beliefs about lung cancer among at-risk segments of the NSW population.
A written record of each focus group was provided by the bilingual researchers in English, translating key quotes to illustrate pertinent points in the data and outlining the discussion according to each
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domain in the discussion guide. In keeping with the strengths of qualitative approaches, analysis was conducted using Strauss and Corbin’s systematic approach.19 Specifically, thematic analysis incorporated initial theoretically sensitive coding, followed by axial coding developing a matrix of themes and sub-themes completed by author 1, verification with secondary coding completed by author 2 and final verification of themes completed by bilingual researchers.
Results Participants In total, seven focus groups were undertaken with Mandarin, Cantonese, Vietnamese and Arabic-speaking individuals living in NSW (n = 51). Participants were aged 44 years and older, and segmented into four groups of current smokers and three of nonsmokers (Table 1). Three groups contained males only given the gender-specific nature of smoking in these communities (Mandarin, Cantonese and Vietnamese-speaking). Four groups included a mixture of males and females (Cantonese, Vietnamese and Arabicspeaking).
Perceived susceptibility Participants accurately reported that a person diagnosed with lung cancer was more likely to be male than female, over 40 years of age and be a regular long-term or heavy smoker. While smoking was the most discussed risk factor, the general concept of risk factors was not clearly understood.
Yesterday, I attended the funeral of a 102 year old man, who smoked like a steam train, and he smoked till the day he died, so not necessarily smokers have higher risks. (Vietnamese smoker) Smoking is one factor but it is not the only factor to develop lung cancer, otherwise everybody who smoked died of lung cancer. (Arabic non-smoker) As well as smoking, other perceived risk factors for lung cancer were suggested, including stress, lifestyle, environmental factors and genetics. Environmental risk factors and agricultural food production Table 1. Profile of focus group participants Language
No. of participants
Gender
Age range (years)
Smoking status
Mandarin Cantonese Cantonese
7 7 6
45–65 44–65 44–64
Smokers Smokers Non-smokers
Vietnamese Vietnamese
8 8
45–65 45–65
Smokers Non-smokers
Arabic
7
45–65
Smokers
Arabic
8
All male All male 3 male 3 female All male 4 male 4 female 4 male 3 female 5 male 3 female
45–65
Non-smokers
were discussed in the Cantonese and Mandarin-speaking smoker groups.
The environment plays a great role in your health, if you are living in a heavily polluted area or your food chains are circulating in a vicious way, you can easily catch the cancer. Even though you pay a lot of attention to your diet, the food you eat daily has been processed with some additives or catalysts, it’s easy to get the cancer. (Mandarinspeaking smoker) It was generally agreed by the Cantonese speakers that a positive outlook and personality could lower risk of lung cancer and affect prognosis.
The patient’s mental health, family support, religious belief, lifestyle and diets would determine the prognosis. (Cantonese-speaking non-smoker) In terms of personal susceptibility, ex-smokers in the non-smoker groups saw themselves as not susceptible to lung cancer, particularly the Cantonese and Vietnamese-speaking non-smoker groups.
We all have stopped smoking for more than 10 years at least. Every 7 years, all the cells in the human body changed completely, so we are practically a non-smoker, because our lungs renewed themselves already, but there may be nicotine stored in our body that hasn’t been cleaned out yet. (Vietnamese-speaking non-smoker) Further, smokers in all three CALD groups were mixed in their views of whether smoking increased their risk of lung cancer; some felt they had no greater risk of lung cancer than ex-smokers or nonsmokers. Some of those in the Arabic-speaking smoking group felt they were not at increased risk compared with non-smokers due to their healthy lifestyle choices being more influential than their smoking or that their bodies were immune. In the Arabicspeaking group, shisha (water pipe) smokers felt they were at lower risk of lung cancer than those who smoked cigarettes, and vice versa for the cigarette smokers. In the Arabic-speaking smoker group there was a sense of denial towards the risk of developing lung cancer, and cancer more generally, as well as the link between smoking and lung cancer.
In order to keep enjoying smoking we block the idea of cancer out of our mind. (Arabic-speaking smoker) Arabic-speaking groups also expressed a cultural perception and stigma towards cancer, whereby the more one talks and thinks about cancer the higher the risk.
If one keeps thinking about it he or she will get this disease....so not thinking about it would be a better way to reduce the risk. (Arabic-speaking non-smoker)
Perceived severity There was some awareness of the importance of early diagnosis of lung cancer (primarily amongst Cantonese-speaking smokers),
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however all groups thought survival rates would be very poor for people with lung cancer. Arabic-speaking smokers generally believed that a person would die six months after diagnosis, and the groups could not recall any cases where lung cancer treatment was successful.
We have been always hearing about people diagnosed with cancer and that they went into treatment and then they died. (Arabic-speaking non-smoker) Cantonese and Vietnamese speakers reported people would not survive more than five years and Mandarin-speaking smokers reported survival would be no more than three years after diagnosis. There was limited knowledge of lung cancer, however generally it was felt diagnosis would occur in a late stage. Further, fatalistic views towards cancer in general were apparent across all three CALD groups.
Cancer has always been a fatal disease for which there is no treatment. Once you get it, you only wait to die. You know, treatment only keeps you alive a little bit longer. (Vietnamese-speaking non-smoker) Some participants in the Chinese and Vietnamese groups felt that the prognosis was more promising with early diagnosis than late diagnosis. Opinion on early diagnosis was also not consistent, as some in the Cantonese non-smoking group thought diagnosis was not possible in the early stages of lung cancer.
Depending on the stage at which people were diagnosed, if they were diagnosed early, the chance of them surviving longer is higher. (Cantonese-speaking smoker) Compared with other illnesses Arabic-speaking smokers felt that cancer was of greater concern as participants believed other diseases could be managed and some cured, whereas cancer could not be.
Cancer is not well understood, while other diseases’ symptoms and diagnosis are well understood. (Arabicspeaking smoker)
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Awareness of signs and symptoms There was a mixed response between the groups regarding awareness of symptoms consistent with lung cancer; the generally agreed consensus for each group is outlined in Table 2. Coughing up blood (haemoptysis) and weight loss was identified by all groups as symptoms that would prompt them to see their general practitioner (GP). Mandarin speakers said they were aware that all symptoms discussed were symptoms of lung cancer, while the Cantonese, Vietnamese and Arabic-speaking groups agreed on fewer symptoms that could be a sign of lung cancer. There were minimal differences in the awareness of key symptoms (haemoptysis, a cough that changes or new cough and persistent cough) between the smoker and non-smoker Cantonese and Vietnamese-speaking groups. Differences were more apparent between the two Arabic-speaking groups. Arabic-speaking smokers were less knowledgeable about symptoms than non-smokers and advised they would not be concerned by a cough that changes/new cough or persistent cough as they were not seen to be symptoms of lung cancer. All groups reported they gained knowledge of lung cancer symptoms from family and friends, as well as gaining information from anti-smoking television advertising, but recognised that their knowledge was limited.
We only know that it is related to coughing blood and it is a deadly disease. (Arabic-speaking smoker) Mandarin-speaking smokers also referred to gaining knowledge of lung cancer from newspapers, magazines, community workshops, health professionals and websites. All participants requested further information, with consensus that telling people the symptoms of lung cancer would encourage community members to take these symptoms more seriously and seek medical help.
Help-seeking behaviour and attitudes towards GP There was a mixed response across the groups regarding which symptoms would prompt participants to visit their GP, and how long
Table 2. Group consensus on lung cancer symptoms, when prompted, by language Symptoms
Mandarin smokers
Cantonese smokers
Cantonese non-smokers
Vietnamese smokers
Vietnamese non-smokers
Arabic smokers
Arabic non-smokers
A cough that changes or a new cough Persistent coughing Wheezing Coughing up blood (haemoptysis) Chest pain Repeated pneumonia or bronchitis Pain in abdomen Loss of appetite Weight loss Fatigue
Yes
No
No
Mixed
Yes
No
No
Yes Yes Yes
Mixed Unsure Yes
Mixed No Yes
Mixed Yes Yes
Yes Yes Yes
No No Yes
Yes No Yes
Yes Yes
No No
No Unsure
No Yes
Mixed Yes
No Yes
No No
Yes Yes Yes Yes
No No Yes No
No No Yes No
No Yes Yes No
No No Yes No
No No Yes No
No Yes Yes No
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they would wait before seeing a GP. Cantonese-speaking smokers reported that they would seek help for symptoms such as persistent cough, but only if it lasted more than 3 months. Vietnamesespeaking smokers and non-smokers reported they would talk to their GP about all of the symptoms. Arabic-speaking smokers and non-smokers reported they would see their GP for a fever, a strange cough, coughing up blood and shortness of breath. The researchers also explored the levels of trust in GP and the ability to direct help-seeking behaviour. In the Chinese and Vietnamese-speaking groups, there was a high level of trust and acceptance of their GP recommendations.
I will put my life in doctor’s hands and listen to what doctors say. (Mandarin-speaking smoker) The Mandarin-speaking group qualified these statements by saying that the needs of patients who were terminally ill should also be respected by doctors and family members, such as when they choose not to proceed with aggressive treatment. The levels of trust in GP and specialists in the Arabic-speaking groups were lower than the other groups. Overall, a greater sense of fear was articulated in the Arabic-speaking groups in relation to help-seeking for health concerns. Participants discussed reluctance to go to the doctor for fear of bad news, particularly if one is referred to a specialist, with associated stress and anxiety when waiting for a diagnosis.
Discussion There was limited understanding of lung cancer across the three CALD communities in this study. This was observed in terms of selfreported assessment of knowledge, as well as participant responses indicating limited understanding. Differences in awareness of the symptoms of lung cancer were apparent in the three CALD communities. Haemoptysis was identified correctly by all groups as a symptom and the Mandarin-speaking group acknowledged that all symptoms discussed were symptoms of lung cancer; however, the Cantonese, Vietnamese and Arabic-speaking groups had limited awareness of signs and symptoms such as a cough that changes, fatigue, abdominal or chest pain and loss of appetite. Previous research has also highlighted low knowledge about symptoms of lung cancer in the general community; less than half of the respondents of a survey of 685 residents in NSW nominated persistent cough as a symptom.15 This indicates that as well as targeted messages for CALD communities on symptom awareness, messages for the general community may also be required. Similarities across the three CALD communities included that knowledge of lung cancer prognosis is worse than for most other cancers, and that there is limited awareness of the importance of avoiding delays in help-seeking following symptom onset. In the Arabic-speaking groups, this is further hampered by fear or mistrust of GP and specialists and fatalistic attitudes towards cancer more
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broadly. Apart from a few participants in the Cantonese-speaking smokers group, there was also limited awareness of the importance of early detection of lung cancer. Another important finding of this research was an inaccurate assessment of lung cancer risk factors that occurred in all three CALD communities. Specifically, smoking as a risk factor was underrecognised across the smoking groups and among ex-smokers in the non-smoker groups. Denial of the link between smoking and lung cancer was particularly evident in the Arabic-speaking smoker group. The under-recognition of smoking as a risk factor is in contrast to the general community; a survey of 685 NSW residents showed that 96% of the respondents agreed that smoking was a risk factor for lung cancer.15 Further investigation is needed on the impact of limited awareness of early-detection and recognition of smoking and lung cancer risk on help-seeking behaviour and lung cancer prevalence among CALD communities. Health inequities between CALD communities and the broader population may be created or sustained by factors such as: the migration and settlement process; the prevalence of smoking and tobacco control in countries of origin; limited access to health services; and communication barriers.9 There is strong evidence that the use of public education mass media campaigns increases the knowledge of the health effects of smoking and encourages quit attempts and thus is a core provision of the World Health Organization’s Framework Convention on Tobacco Control.20 Depending on length of time since migration to Australia, limited tobacco-control initiatives in countries of residency overseas9 may contribute to misunderstandings of lung cancer risks, diagnosis and prognosis, as do culturally-specific contexts such as shisha smoking amongst Arabic-speaking smokers,21 and the higher prevalence of smoking among Vietnamese and Chinese men compared with women.7,8,22 There are several limitations in this research. As this CALD component was part of a larger study about community awareness, data saturation was not achieved within each language group. Detailed demographic information, such as participants’ length of time living in Australia, was not available; this information would have been useful in understanding exposure to public health messages and further contextualising knowledge, attitudes and beliefs about lung cancer. Whilst an enhancement to data quality, the fact that the field work was conducted in languages other than English meant that the authors relied on translated written reports of the group discussions for analysis rather than verbatim transcripts. This limitation was mitigated through the involvement of the bilingual researchers in the coding verification process.
Conclusion The prevalence of smoking among Chinese men, Vietnamese men and Arabic-speaking communities in NSW puts them at increased risk of lung cancer.7,8 This research indicates that within these
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communities, awareness of lung cancer susceptibility, symptoms and diagnostic pathways was limited and influenced by knowledge gained from family, friends, cultural perceptions and anti-smoking television advertising. The findings contribute to research on cancer and CALD communities in NSW, which is currently limited.
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The understandings gained from this research can be used to inform appropriate health-promotion initiatives. For instance, tailored messages on lung cancer for each of the three CALD groups should focus on increasing knowledge of key symptoms, increasing awareness that ex-smokers as well as smokers are at risk and increasing awareness of the diagnostic pathway. As GP are crucial to earlier diagnosis of lung cancer, these findings also highlight the importance of cultural competence among health care practitioners and the need to promote the tailoring of health care practice and systems to address the needs of diverse communities.
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Acknowledgments We thank the participants of this study. We also thank CIRCA researchers Candy Mok, Kim Pham, Tamim Darwish and Wendy Wang for their contribution in facilitating the focus groups. Dr Holly Seale is supported by an NHMRC Australian-based Public Health Training Fellowship (1012631). This work was completed while Nicola Scott was an employee of the NSW Public Health Officer Training Program, funded by the NSW Ministry of Health, whilst based at the Cancer Institute NSW.
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