Objectives: To identify barriers to and facilitators of colorectal cancer (CRC) screening participation among different cultural subgroups in South Australia, and to describe how these might be shared or be distinct across these groups.
Design, participants and setting: Qualitative study using individual interviews in Adelaide, South Australia, between July 2009 and December 2010. Participants were recruited from five culturally distinct groups in SA (Greek, Vietnamese, Iranian, Indigenous and Anglo-Australian) and included people who had participated in CRC screening and people who had not.
Results: We interviewed 121 people. Members of all groups expressed positive attitudes towards cancer screening. However, we also noted a lack of knowledge about bowel cancer and its screening tests across all groups, and that the tests were viewed as unpleasant. Issues that differed across groups included language barriers, fatalistic views about cancer, embarrassment, the importance of privacy, the significance of a doctor’s recommendation, moral obligations, and culture-specific concerns.
Conclusions: This study suggests that population-based screening programs may need to be modified to facilitate access and participation among minority populations and Indigenous people if equity in screening is to be achieved.
Colorectal cancer (CRC) is the second most common cancer and cause of cancer mortality in Australia.1 Up to 90% of CRC mortality may be preventable with early detection, indicating that the net benefit of screening is substantial.2 A National Bowel Cancer Screening Program (NBCSP) for early detection of CRC was adopted recently in Australia.3,4 Studies in Australia and overseas have shown disparity in CRC screening participation based on socioeconomic status,5-7 location,3,4,8 ethnicity,9-11 age and sex.12-14 Australian NBCSP reports found lower participation rates among men and socioeconomically disadvantaged, Indigenous and non-English-speaking populations.3,4,15-17 Although studies have investigated barriers to and enablers of screening participation,18-20 few have included different cultural groups. Guidance is needed for best practice in the development of targeted screening invitation strategies designed to address the concerns of specific groups that may be underserved. We aimed to identify and compare barriers to and facilitators of CRC screening in different cultural groups in South Australia.
We conducted a qualitative study based on interviews with people from different cultural groups in South Australia21 between July 2009 and December 2010.
We recruited participants aged 50–75 years (except for six Indigenous participants aged under 50 years) from five cultural groups: people who identified as Greek, Vietnamese or Iranian, through their response to community associations and advertisements on their local radio stations; native-English-speaking Anglo-Australians, through local newspapers; and Indigenous people from metropolitan Adelaide and rural and remote South Australia, through SA Health and the Aboriginal Health Council of SA.
Interviewers explored participants’ knowledge and experience of bowel cancer and screening, including barriers to and facilitators of screening. Interviews were audiorecorded and transcribed verbatim. Text was entered into NVivo, version 8 (QSR International, Southport, UK) for analysis. A coding structure was developed based on key concepts from the research questions. We also generated codes inductively to capture unexpected concepts. The same coding structure was applied across all groups to enable comparisons between groups.
Ethics committee approval was granted by the Social and Behavioural Research Ethics Committee of Flinders University and the Aboriginal Health Research and Ethics Committee of the Aboriginal Health Council of SA.
We interviewed 121 men and women, 34 of whom had participated in the NBCSP (Box).
Maxims such as “prevention is better than cure” were commonly used by participants. They expressed the value of prevention as a human good, a sign of respect for God or life, a source of responsibility to act, or as economically rational. Most participants expressed the belief that cancer could be prevented by appropriate lifestyle choices.
Only those participants who had received the test kit or had close relatives with CRC knew about CRC. Most people did not know about CRC or the NBCSP. Because of this, the arrival of a test kit made some people anxious: they erroneously believed they had been identified as being at high-risk.
Language barriers were a key problem for most non-English-speaking participants. Although people were willing to participate, they could not read the invitation or follow the instructions for sample collection. This delayed or prevented participation. No participants knew translations were supplied on the NBCSP website. Most participants relied on family members to assist, leading to embarrassment.
I read the instructions but it was not easy to understand. I decided to call the phone number that was provided but I did not feel comfortable either. (Iranian woman, 56 years)
Most Anglo-Australians thought cancer was treatable, and that this had improved over time. However, participants from culturally and linguistically diverse (CALD) groups were more likely to avoid screening because of fear of cancer diagnosis, seeing cancer as unpreventable and fatal.
It’s the forbidden disease. In the Greek community when they hear this word, it is the end of the world for them. They don’t like to talk about it. (Greek woman, 69 years)
I know my grandma, for her the word “cancer” — her immediate thought would have been fear. She came from a generation that cancer was a death sentence, which is not something which it necessarily is today. (Anglo-Australian woman, 68 years)
For most participants, the privacy of at-home testing was valued. However some Indigenous participants used the term “shame job” to describe the FOBT. They explained that they lacked privacy in their homes, neighbourhoods and communities. In remote areas, even postal workers had intimate personal knowledge, creating potential embarrassment from mailed FOBT kits and samples.
Although all participants considered a doctor’s recommendation to be encouraging to some extent owing to trust in or personal obligation to their doctors, Anglo-Australians valued physician endorsement highly and said it strongly influenced their decision to undergo screening.
The Iranian group in particular discussed a moral obligation to participate: compliance was the morally acceptable response to free preventive services offered by a government to improve individual and population health.
Belief in a spiritual aetiology of cancer was also suggested as a potential barrier to screening participation among Greek and Vietnamese communities. Some participants expressed the belief that health and disease and life and death were in God’s hands, and so not preventable.
We identified several culture-specific issues related to CRC screening among five culturally distinct groups in Adelaide. Further work is necessary to extend and replicate our findings; however, we propose several possible strategies that could be tested as means to achieving greater equity in the NBCSP.
The first is changes to public communication about cancer and screening. We found different under-standings of the preventability of cancer in different groups. Media reporting of CRC in Australia has been shown to be relatively low;22 accurate reporting of preventability and screening efficacy, including social marketing about screening, could improve screening uptake. This would need to be culturally and linguistically appropriate. In this study, English-speakers found testing straightforward, easy and private; non-English speakers were confused, felt uncomfortable and had to talk to a family member about their faeces. Translated program documents on a website made no difference. If equitable access to screening is to be provided, language barriers must be overcome.
Our second strategy relates to the role of health professionals in screening. Consistent with many other studies,20,23,24 we found a doctor’s endorse-ment facilitated screening participation for all participants, and especially Anglo-Australians. We hypothesise that involving health care professionals in screening using an FOBT may benefit most Australians, for different reasons. For people from CALD groups, a health professional may help with several identified barriers: language, problems with self-efficacy and confidence, and fatalistic views about cancer. Anglo-Australians valued both privacy and medical recommendation and they may prefer to receive their clinician’s recommendation, then take the test home to use in private. For Indigenous Australians, testing as a “shame job” appeared to arise from the smallness and interconnectedness of communities, and being screened by health workers in such a community may contribute to this embarrassment. Indigenous community-controlled research may be needed to identify possible solutions.
The diversity we observed across participant groups suggests that a one-size-fits-all bowel cancer screening program is not equitable. Tailored approaches need to be developed to ensure equitable participation across the population.
Characteristics of interview participants, and sampling information