Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services
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Despite a lower overall incidence, Aboriginal Australians experience poorer outcomes from cancer compared with the non-Aboriginal population as manifested by higher mortality and lower 5-year survival rates. Lower participation in screening, later diagnosis of cancer, poor continuity of care, and poorer compliance with treatment are known factors contributing to this poor outcome. Nevertheless, many deficits remain in understanding the underlying reasons, with the recommendation of further exploration of Aboriginal beliefs and perceptions of cancer to help understand their care-seeking behavior. This could assist with planning and delivery of more effective interventions and better services for the Aboriginal population. This research explored Western Australian (WA) Aboriginal peoples' perceptions, beliefs and understanding of cancer.
A total of 37 Aboriginal people from various geographical areas within WA with a direct or indirect experience of cancer were interviewed between March 2006 and September 2007. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. A social constructionist framework provided a theoretical basis for analysis. Interpretation occurred within the research team with member checking and the involvement of an Aboriginal Reference Group assisting with ensuring validity and reliability.
Outcomes indicated that misunderstanding, fear of death, fatalism, shame, preference for traditional healing, beliefs such as cancer is contagious and other spiritual issues affected their decisions around accessing services. These findings provide important information for health providers who are involved in cancer-related service delivery.
These underlying beliefs must be specifically addressed to develop appropriate educational, screening and treatment approaches including models of care and support that facilitate better engagement of Indigenous people. Models of care and support that are more culturally-friendly, where health professionals take account of both Indigenous and Western beliefs about health and the relationship between these, and which engage and include Indigenous people need to be developed. Cultural security, removing system barriers and technical/scientific excellence are all important to ensure Indigenous people utilise healthcare to realise the benefits of modern cancer treatments.
KeywordsIndigenous People Aboriginal People Torres Strait Islander Human Research Ethic Committee Fatalistic Belief
A series of reviews recently highlighted differences in the epidemiology and the poorer outcomes of cancer in Indigenous people in Africa, Polynesia and Australia [1, 2, 3, 4]. Given the complexity, expense and technology involved in modern cancer treatment, such disparities in cancer outcomes are unsurprising in the developing world. However, in Australia and New Zealand, the differences in cancer survival for Indigenous compared to the non-Indigenous populations warrants further investigation as these countries have well developed health systems offering universal healthcare for their citizens. Aboriginal and Torres Strait Islanders are the original inhabitants of Australia, and often referred to as Indigenous Australians. In this paper, the term Indigenous has been used to refer to first nation or the original inhabitants prior to colonisation in different countries including Australia. However, Aboriginal is the term preferred by vast majority Indigenous people of WA and is used for study participants.
Indigenous Australians have a lower incidence of cancer overall than the non-Indigenous population[3, 5] although the epidemiology differs and includes higher rates of cancers with a poor prognosis. The improvement of around 20% in cancer survival in Australia over the last twenty years has not been shared by Indigenous survival figures, with Indigenous Australians 2.5 times more likely to die within five years of cancer diagnosis. The factors underlying these poorer outcomes include health and social disadvantage, health risk behaviours, lower participation in screening programs, later diagnosis of cancer, lower uptake and poorer compliance with treatment and poorer continuity of care[3, 8, 9, 10, 11]. While the relationship between knowledge, attitudes, beliefs and behaviours is complex, most theories of behaviour acknowledge that beliefs and attitudes have also an important influence upon an individual's decision to access healthcare.
Health, health practices and care-seeking behaviour are culturally bound. Culture is enmeshed in historical, social, economic and political relationships and processes and influences the ways that people understand cancer which, in turn, affects their decision-making around care-seeking and accessing of services [14, 15, 16, 17, 18]. Beliefs such as 'talking about something can cause it to happen', screening is unnecessary in the absence of symptoms; relating cancer with black magic; and religious beliefs about destiny have been found to impede early detection and treatment[12, 19, 20].
The system of health care provision often fails to meet the needs of vulnerable groups. In Australia, Indigenous people are particularly at risk because, on a range of health and social indicators, they are the most marginalised of any identifiable group. While individual disadvantage is not unique to Indigenous people, it is the coalescence of markers of disadvantage and the resulting health outcomes that make understanding Indigenous beliefs particularly important. Cunningham et al recommended that messages from qualitative studies exploring the views and understanding Indigenous people with cancer must be taken into account.
Considerable differences exist in the perception and definition of health, healthy living, wellbeing, illness, and the meaning of disease and death between Indigenous Australians and the dominant Anglo-Australian society [21, 22, 23]. Few attempts have been made to systematically explore Indigenous views about cancer. This paper reports the first comprehensive Australian study of Aboriginal beliefs about cancer.
The research adhered to guidelines for ethical conduct of Aboriginal and Torres Strait Islander health research, and was approved by the Human Research Ethics Committee (HREC) of Curtin University, the Western Australian Aboriginal Health Information and Ethics Committee, and the ethics committees of the Royal Perth and Sir Charles Gairdner Hospitals. Approval was also obtained from local Aboriginal Health Services. Efforts were made throughout to conduct the study in ways that would build capacity and help equalize power between Aboriginal participants and researchers[26, 27]. An Aboriginal Reference Group (ARG) provided input throughout.
Characteristics of study participants
Aboriginal Participants (n = 37)
Area of Residence
Category of Respondent
Health Service Providers
The social constructionist framework which emphasizes the complex development and interaction between knowledge, meaning, interpretation and power in the constitution of belief systems assisted understanding in how the cultural meaning of cancer impacted upon participants' care-seeking behaviour. Social constructionists hold assumptions that individuals develop subjective meanings of their experiences that are guided, to some extent, by their beliefs and understanding which are constructed and negotiated socially and historically.
QSR NVivo7 software was used to manage data and support analysis. Thematic analysis of participants' transcribed interviews involved open coding independently by two researchers. Participants' responses were broken down into distinct units of meaning, or codes. Member checking was used to clarify whether emerging themes were an accurate reflection of the participants' experiences. The axial coding stage involved continuous comparisons of codes with one another to discover links between the categories, with related categories combined and compared to new data, arranged and rearranged to identify the key themes. To maximize reflexivity and rigour, all stages were discussed within the research team for verification and clarification of emerging themes. Interpretation was assisted by consultation with ARG members and through presentations and feedback at various Aboriginal group meetings.
A range of beliefs were reported, some by most participants while others occurred less commonly. Beliefs foreign to the western scientific paradigm were just as likely to be expressed by urban and educated residents, including those who had worked within mainstream health settings. In reporting, emphasis is given to findings at odds with western medicine or experiences common to many participants.
Perspectives and understanding of cancer
Spirituality and cancer
"...it was almost like you deserved it or there was definitely this sense of shame. It was whispered. If someone died of a heart attack you would say that, but... all this cancer stuff was a whispered sort of stuff."
Relating cancer to spiritual causes is a pre-Enlightenment phenomenon and continues in Indigenous people elsewhere[19, 34] and in other cultures[18, 35]. It can often work as a coping mechanism to help overcome loss. One participant who had trained as a nurse in telling the story of her daughter's death from cancer talked of her daughter embodying her grandmother's spirit, being sent to explore her grandmother's country and ancestors. The daughter's death was accepted as inevitable, an outcome whispered to her by her mother's spirit long before her daughter's death.
Fatalism and cancer as a death sentence
"... they are just scared, because at the very end they know they are going to die. As soon as they hear the word cancer they are scared. Cancer is a scary word in the Aboriginal communities."
"It's sort of like your world crumbles. All we know about cancer is you die from cancer, not so much that cancer can be cured. You always know that as soon as you get cancer you are gone..., you are a goner".
"I saw my Mum goes through chemo and radiation... I saw my baby brother go through it. I seen my first cousin goes through it, and all my aunties all had cancer, all my mum's sisters. They have all passed away with cancer...."
"I don't think that it's something you can prevent, it's just people are chosen. ... you can go and have tests every six months, and one day you could just have it and it's been there the whole time..."
Many cultures hold similar beliefs regarding destiny and God's will. Such fatalistic beliefs are strongly associated with delays accessing pap smears and follow-up of abnormalities. Patients with a fatalistic outlook are less likely to take steps to lower their cancer risk, and accept their "imminent demise and refuse potentially life-saving treatment".
"...you shouldn't stop your life because of all these sicknesses... that's just something that happens, and you deal with it when it comes along... so until then ... just forgetting... laughing...".
Unrealistic expectations of treatment
"she keeps saying, 'I have no more cancer... oh they took it all now...' And I keep saying to her, 'Mum, no, it's not true. It's still in your body. Although they took your bubies off, you still got the disease. You got to be careful...."
Both cancer deaths and recurrences led to disappointment, often considered as an over-reliance or misplaced trust in doctors and western medicine. This could strengthen the distrust Indigenous people commonly feel towards western organisations including doctors and the medical system[40, 41]. Personal stories of an individual's disillusionment with the medical system spread in the community, in turn influencing the choices others make around screening, early presentation and treatment for cancer. Distrust and negative experiences in the health system have similarly adversely impacted cancer care-seeking of other minorities.
Cancer is contagious
"There was a couple who were really scared of but there was one lady... she actually couldn't sit next to me. She sat across the room from me. She wouldn't talk to me for a long time, because she was scared...
Other studies have shown strong links between a person's beliefs about contagiousness, hiding their sickness and avoiding treatment, and feeling stigmatized or fearing being ostracized[19, 29]. Although the belief that cancer is contagious is almost non-existent among the general population in WA, it can persist among some people from diverse cultural backgrounds.
Understanding of cancer
Fatalistic beliefs and attitudes in the general population have changed as a result of scientific research, dissemination of information and education to help people understand the biological basis of cancer and modern treatment. However, the poorer educational background and socio-economic conditions of many Indigenous Australians have limited their access to information and understanding about disease. A lack of knowledge about types of cancer, symptoms, treatment options and outcomes was apparent, with some respondents having never considered what type of cancer a loved one had. Irrespective of geographic residency, respondents reported not initially recognising the cancer symptoms and delaying getting them checked. One woman had never taken the time to find out about serious illnesses and "didn't have a clue that it was the start of ...where that brown part puckering up, tightens up." The idea of self examination, of checking yourself for abnormalities that appeared to be foreign: "He asked how long I had the lumps (under my arms and neck)...I asked what lumps, I hadn't even felt any lump."
"She thought her nose was bleeding because her husband punched her in the nose, and I don't know that she ever understood that it was anything more than that, because that was her experience was, everything was all right until he punched her in the nose and it started bleeding."
Close family members were often unsure about what was happening to relatives and felt they could have helped more had they been better informed or more knowledgeable. Comments such as "we didn't know what was happening" and "We didn't know that she got cancer until she died" were common. These comments reflect communication problems for Aboriginal people within health facilities, and ignorance about cancer symptoms such as weight loss, anorexia and bleeding. "I didn't relate dad's condition to cancer. I found out later when I read up about it ...it was... almost ten years after I lost my dad."
"I don't think they understand it. They don't understand about prevention. They don't understand about early detection and screening. Really, I felt that – from working there – some of their experiences or their understanding is so simple, it is very childlike."
Poor knowledge about cancer warning signs, screening and risk factors among minority populations have been reported elsewhere[17, 44, 45]. This limited understanding contributes to the many communication gaps between practitioners and patients, increasing patients' frustration with doctors and the medical system.
Perceptions of cancer screening
"The prostate thing with the Aboriginal men is... like I say is a 'taboo'... area. They will not go and get a simple test done by the doctor... they feel very funny about it, and so they usually leave it until the last minute, and sometimes that's just too late."
Urban versus rural/remote differences
"I just feel replenished. My soul is just ... sort of filled up again. I'm home; 'This is where I feel so good.' And it feels good in here. I might not feel healthy. I might have a cold or whatever, but inside I feel ...It just fills me up. It's like a warm bath inside..."
Bush medicine and traditional Aboriginal healing practices
"There is something in it...that is good for your insides, just as a cleanser. Makes all your body organs healthy and strong, it gets rid of all your internal stress."
Participants also emphasized the importance of cancer being diagnosed at an early stage for bush medicine to work. Even when cure was not possible, bush medicine was used for palliation, often signifying a re-connection to land, ancestral and spiritual roots that enhanced the person's overall wellbeing.
Use of complementary and alternative medicine is high among cancer patients[51, 52]. Certain populations, including Indigenous people worldwide, have their own approaches to healing as part of their culture [50, 53]. Western health practitioners need to understand and acknowledge traditional healing and treatment approaches in order to work and communicate effectively with Indigenous patients.
Beliefs, understanding and interpretation stem from shared values, social relations within and between the family and the community, past experiences, cultural identity, and values[56, 57]. Like many other cultures[18, 58], notions of 'living well', 'sickness' or 'illness' present a complex, dynamic picture in Indigenous populations. Concept of health and wellbeing range from 'absence of symptoms of illness' to a more complex and holistic view of health as the consequence of physical, environmental, mental, and spiritual balance. Lifestyle factors, a person's social relationship with others and harmony with their culture are considered interrelated influences on health. Thus, there is poor compatibility between the underlying principles of the Western reductionist medical system and traditional Indigenous health beliefs[50, 59], or even those more recently socially constructed, which shape their care-seeking and willingness to engage with services. Changing community narratives by respecting Aboriginal culture, through education and improving life circumstances and trust of the health system will be important to change the constructs within which cancer beliefs are framed. Health care providers must consider, respect and respond to these needs if they are truly committed to improving Indigenous health outcomes.
The overall pessimistic attitude of Aboriginal people towards cancer as a 'killer' resonates with that of many other cultures [60, 61]. Participants' understanding that cancer can often be delayed or overcome with timely Western medical treatment was limited. They had limited access to relevant information, and the shame attributed to cancer and reluctance to talk about it meant stories of survival were not widely disseminated. Appropriately targeted education campaigns, Aboriginal cancer support services and opportunities for Aboriginal survivors of cancer to be advocates in their communities are needed.
Traditional beliefs are not simply displaced by western biomedical understanding, they can co-exist. A study of Indigenous Australian and Papua New Guinean health science students showed that the Indigenous university students conceptualized health and illness in a way which accommodated biomedical science within an integrated scheme of mental, physical and spiritual well-being. Education in western health care did not alter their core philosophy towards life and their spiritual belief system. Therefore, ensuring services are culturally appropriate is important for all Indigenous people, including those with higher levels of education and living in urban areas.
Many Aboriginal people retain a preference for using bush medicine and traditional healing, even for a "western" disease like cancer. The "doctor-dependent, hospital-based, curative western health care model" for treating cancer does not generally recognize, and incorporate traditional systems for healing. However, the combined use of both types of expertise can optimise the response to various health problems, including cancer.
Participants argued for cross-cultural educational initiatives where western cancer support entails an understanding, acknowledgement and acceptance of Aboriginal belief systems and that they are different to western understandings. Aboriginal people also need to understand that western understandings are different. Consideration of cultural differences is essential for health care providers to fully appreciate the impact of this disease on patients' physical and mental well-being. Mutually appreciative understanding of cultural differences is a key to encouraging Indigenous people's willingness to participate in health care to enhance early detection, develop appropriate interventions and ultimately improve cancer outcomes.
Paramount to cancer being curable is diagnosis at a stage before spread, when treatments are most effective. The association of cancer with death reflects the tragic reality that Indigenous people are often diagnosed with cancer at an advanced stage, and consequently die within a short period of diagnosis [5, 63, 64]. Participants commented that some people who develop symptoms consistent with cancer avoid assessment and diagnosis, preferring to hide their symptoms, again a phenomenon not restricted to Aboriginal people. In this way, they avoid confronting their diagnosis and potential mortality for a period of time. This situation needs to be approached through effective education about risks, symptoms and treatments for cancer. In addition, reducing barriers in access, providing more culturally secure health service provision, increasing the visibility of Aboriginal cancer survivorship and focusing attention on the importance of early diagnosis are strategies that can enhance cancer mortality in Indigenous communities.
The study was undertaken only in Western Australia, and it may not reflect the views of Aboriginal people throughout Australia who have different cultural traditions and beliefs. Men were under-represented in our participants which may be due to the primary interviewer being female, the predominance of women among the ARG members and in the community-based health workforce, and the higher utilisation of health services by women compared to men[66, 67]. Another limitation was that participants needed to be able to speak English, and this proficiency in English would undoubtedly have some affects on acculturation and exposure to western understandings of health and illness.
This research was originally supported by a grant from The Cancer Council of Western Australia. Shaouli Shahid is currently supported by Curtin University and the NHMRC Capacity Building Grant (ID 457279). We thank all of the participants for sharing their stories and experiences and the many health service providers that assisted the process. We acknowledge the invaluable contribution of the Aboriginal Reference Group and other investigators and colleagues for their advice: Peter Howat, Brian Bishop, Timothy Threlfall, Katie Thomas, Moyez Jiwa, John Mallard, Terry Slevin, Leanne Pilkington, Francine Eades, Dot Henry, Gwen Rakabula, Jude Comfort and Kim Worthington.
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