Participant characteristics

Of the participants, 30 were Aboriginal patients with cancer and family members (14 patients with cancer/survivors and 16 family members). In total, 19 (63%) were from rural/remote communities and 11 were from urban areas. The HSPs (62 in total) comprised general practitioners (GPs)/clinic nurses (29.0%), oncologists (3.2%), Aboriginal health workers (19.3%), cancer nurse coordinators (8.1%), palliative care providers (17.7%), social workers (11.3%) and others (11.3%). Forty-five of the HSPs were non-Aboriginal and about equal proportions of all HSPs were recruited from urban and rural settings (table 1).

Qualitative findings

Three main themes were found to be contributing to the delay in diagnosis: contextual, health system and patient-related factors.

Theme 1: contextual factors

Broader socioeconomic, historical and political backgrounds define the context of a population group and determine their connection with the society. Patients' beliefs, knowledge, understanding and interpretation around overall health, patients' social networks and their relationship with health services and approachability, accessibility, availability, affordability and interpretation of appropriateness of health services are all shaped by these contextual factors. These factors are discussed below under two subthemes: impact of colonisation and racism and socioeconomic deprivation:

Impact of colonisation and racism: Historical treatment and ongoing racism experienced by Aboriginal Australians in their daily lives have had significant negative impact on their trust and health-related communication with mainstream primary and secondary healthcare professionals and services. Although not generalisable to all Aboriginal patients, several participants spoke about their discomfort related to their Aboriginality, based on service providers' attitudes and racist experiences within the health services. Some participants remarked that no matter how caring the doctor or other health practitioner is, it is the patient's past experience of their encounter within the health service overall and their trust of that service that affects their willingness to attend, to adhere to the advice they receive and to re-attend:When you talk about the hospital system, I can say, yes … we've been into some of the units at hospitals where you are just looked at—I know that when my sister was having her treatment, we would walk into the chemo unit, being the only three Aboriginal people there, her, myself and her husband, you would have a lot of white people sitting around and they were just staring at you and they don't come and sit next to you. So, when you are talking about the broader systems, yes, there are those barriers there for Aboriginal people. (Urban Aboriginal patient)

One GP recounted an episode where an Aboriginal patient had arrived at the oncology appointment, checked in the receptionist and took her seat. Another patient who arrived after her was then ushered into the clinic ahead of her. The Aboriginal woman was insulted and left the oncology outpatients, and told the GP she refused to attend for cancer treatment. When the GP investigated, she found out that the woman had arrived early for her appointment and the patient who was seen first had an earlier appointment. But based on the woman's lifelong experience of discrimination, it was unsurprising that she attributed this encounter as yet another example of the health system exhibiting bias and prejudice against her as an Aboriginal woman.

Socioeconomic deprivation: HSPs pointed out how lower socioeconomic conditions impacted on Aboriginal people's willingness and capacity to access health services and contributed to the delay in cancer diagnosis. Ongoing ‘stressors in life’ were also seen as responsible for the delay:When I came to work this morning… I had a reasonable night of sleep, in a warm bed in a house of roof I have made. I got up this morning… I didn't have to scout around for food … I just opened the fridge, had my breakfast, had a shower, came to work, knew what was gonna happen next… you supposed to come here…and I felt fairly good. Yes, I know that I suffer from hypertension but I have taken my medication and so for the rest of the day… I could feel reasonably comfortable. But, if you always have got ache and pain, if you are always hungry, then [when] the other things come alone … you just don't notice until it's too late. Because it's part of that discomfort. (Urban non-Aboriginal HSP)

Several participants, in similar ways, expressed their concerns around the overall life circumstances that affect the health and well-being of Aboriginal Australians.

Theme 2: health service/system-related factors

The subthemes relate to access to medical services, availability of hospital beds, the absence of overt or limited symptoms, long waiting periods, the lack of a culturally safe environment, retention of HSPs and new foreign-trained health professionals, shortage of Aboriginal health professionals and diagnostic delay in GP clinics.

Access to medical services: Low accessibility to healthcare services was a constant issue highlighted by Aboriginal patients (and their relatives) who lived in rural/remote locations, and among the HSPs. Broader health system and health service infrastructure interact with patients' socioeconomic and cultural characteristics to impede access:It's access to doctors to get a diagnosis …. If you have a lump in your breast or you have PR bleeding and the doctor only comes once every six weeks, then clearly your need gets … He may only see the sickest people and you may not actually be sick at that time. You've just got a lump or some bleeding but you're not sick, so you tend to not be the person that sees the doctor because people are prioritised. (Rural non-Aboriginal HSP)If they're out at a remote community…there's not the same amount of medical support,…there are not doctors going there every week and I don't know how often they go… so maybe when they present they might have already [been] symptomatic but when the doctor comes, maybe they've gone off to another community to visit which often happens and so by the time they get back it could be worse. (Urban non-Aboriginal HSP)

Even after presentation, the waiting period for a diagnostic test was reported to be up to 6 weeks, attributed to scarcity of diagnostic and screening facilities in rural areas of WA. For sophisticated diagnostic tests and postdiagnosis follow-up care, patients require to be transferred to metropolitan facilities with the following issues identified.

Patients with no overt or limited symptoms were given a lower priority compared with those with acute or emergency presentations for air transfers to the city via the Royal Flying Doctor Service. As one participant explained:The same with the flights out for medical care. If there are three or four ladies about to deliver babies and someone with pneumonia, then they're the people that will get on the plane. The person that's coming to have their PR bleeding looked at or their difficulty voiding or something, and she won't get on the plane. So that's one reason. (Rural non-Aboriginal HSP)

Lack of availability of hospital beds for elective procedures also resulted in delays:With my father when we were down there (metropolitan service), he was supposed to go in and have a test….Then they rang and said, ‘Oh, we've over-booked; we'll have to put it off for two weeks.’ I said, ‘Can't he just come in and just be checked? Let us know what to expect because he is turning black.’ They said, ‘Oh, nothing is going to happen in two weeks.’ (Rural Aboriginal family member)

A long waiting period for specialist appointments for public patients was also reported. Despite Australia's universal healthcare system, people without private health insurance may face long waiting periods in the public system for specialist consultations or elective procedures, contributing to diagnostic delays:[For] Medicare …, if I wanted to get someone to have a colonoscopy, the only place that I could get that done would be in the public hospital system. So, they would have to go on a waiting list, whereas in private you could just book it with a private guy. So, we are limited in what we can do by the economics of it. (Urban non-Aboriginal HSP)

The lack of a culturally safe environment for Aboriginal Australians has long been reported as impacting on Aboriginal peoples' willingness to seek help for their health problems and cancer is no exception to that:We know the mainstream doesn't really work for our sick people. They are going to hospital because it's a last resort …. They are sick. That's why sometimes it's too late for a lot of Aboriginal people because there is not culturally appropriate cancer clinics or surgeries. (Urban Aboriginal HSP)

Retention of HSPs and new foreign-trained health professionals: Recruitment and retainment of health professionals is a huge issue in rural and remote areas and creates challenges for continuity of care of patients with primary care providers.38 The high staff turnover creates challenges and hinders development of relationship of trust between a doctor and their Aboriginal patients that impacts on patient care-seeking behaviour. Moreover, many medical professionals in those areas are overseas born and not familiar with Australian or Aboriginal culture, or the history of Australia. Thus, they may lack understanding about the past experiences of Aboriginal people and how it has impacted on their health and well-being. Healthcare models also vary between countries, and the different orientation of medical professionals may impact on how they deal with patients in Australia. A lack of understanding results in communication gaps between mainstream service providers and Aboriginal patients.[Our] Doctors tend to be overseas trained so their understanding I think of the cultural issues and their kind of knowledge of Aboriginal health is, when they start out, limited. And there's also a high turn-over of doctors, so you know, they're there for a couple of years and then they're gone which then means that you've got to teach or a whole new set of doctors will have to get used to the patients. (Rural non-Aboriginal HSP)

These cultural differences were not only restricted to doctors but also reflected on other health professionals.We're such a multi-cultural society and in particular in the health field and with nurses because of nursing shortages we've got a lot of nurses that have been employed from overseas that their culture is totally different to the white Australian culture and then even more vastly different to the Indigenous culture and they don't necessarily understand their issues with shyness. The fact that sometimes they'll say yes because they really don't know what you're answering and they'll say yes they understand but they don't necessarily really understand. So the nurse might be, just think, “Okay, well you understand, I'll walk off and I won't give you any more information.” But they really didn't know or understand everything that was being said. (Rural non-Aboriginal HSP)

Shortage of Aboriginal health professionals: Many respondents commented on the lack of Aboriginal health professionals engaged by mainstream service providers to support Aboriginal patients. One HSP referred it as a huge challenge, commenting that Aboriginal patients need to feel welcomed when they access services and only an Aboriginal staff can do that effectively because “they'd understand the cultures, the land and spirituality of it, we don't. I mean we can read stuff but we don't feel it” (Rural non-Aboriginal HSP). Aboriginal participants affected by cancer consistently reiterated similar messages.

Diagnostic delay in GP clinics: Alongside the accessibility, availability, appropriateness and quality issues, non-specific symptoms associated with some cancers led to misdiagnosis by GPs. Symptoms such as tiredness, weight loss, pain, backaches in the absence of more definite classic symptoms were often considered less urgent from patient and system perspectives; this was considered to result in longer delays. Diagnosis was also more difficult with Aboriginal patients in the presence of other comorbidities:Generally GPs don't look for cancer as the first thing. So they might go through lots of tests and then they might finally decide … maybe we need to do a little bit more… backwards and forwards and things happen a little bit. (Urban non-Aboriginal HSP)

One Aboriginal participant expressed her anger related to one of her family members regularly visiting the doctor, and eventually being diagnosed while still young with an advanced-stage cancer—and dying quickly. She added they had trusted the doctor's opinion and never questioned him. Four other participants from urban and rural locations reported similar stories of attending doctors with symptoms and the diagnosis being missed.

Theme 3: Patient appraisal of symptoms and decision-making

This subtheme relates to symptom appraisal, cultural factors, use of traditional medicines, shame and embarrassment, fear and denial, psychological trauma and gender.

Symptom appraisal: Many patients were reported as not perceiving the severity of their symptoms. One woman reported ignoring warning signs for 10 months, putting symptoms down to her smoking habits until finally she collapsed 1 day at work, admitted to emergency and diagnosed with breast cancer. After noticing symptoms, several patients said they tried to think of an alternative explanations and waited for the symptoms to go away/to ease. It was common to initially interpret their symptoms as natural changes, presumed to be associated with age or stress. This ‘internal dialogue’ phase (‘debating’ their problem in their own mind) was a key factor contributing to the delay in initiation of taking the first step in the help-seeking trajectory.My mum … just died last year. She's forty when sick and she said, “But I just couldn't get to the doctor,” and she had a fistula, so she was leaking urine. And she thought, “Oh well… maybe… I've had all these kids and I've wrecked my bladder …” and so when she finally got to us she had a hole between her bladder and vagina that couldn't be repaired and a stage four cervical cancer. (Urban Aboriginal HSP)

Non-specific symptoms leading to a diagnosis occurring at an advanced stage of cancer with a poor prognosis are common even among general population. This was often not understood nor easily accepted by Aboriginal community members and reinforced the distrust some Aboriginal people have towards the health system and ‘white’ doctors.

Cultural factors: Social and cultural expectations, beliefs and practices can also indirectly contribute to delays in diagnosis, some Aboriginal people preferring looking after each other over seeing a doctor until an illness was severe. Women often ignored symptoms due to competing demands such as looking after sick family members or children, grandchildren or a large extended family, a cultural tradition that is still prevalent in many Aboriginal communities. There were ‘many other preoccupations’ so that time for self was not prioritised. There was varying recognition among health professionals of the multitude of factors that affect an Aboriginal person's life and ability to prioritise their health.

Use of traditional medicines: Bush medicine and traditional healing were used for cancer, although often this use was surreptitious. It was reported that many non-Aboriginal HSPs did not understand or often did not want to acknowledge the use of bush medicine in Aboriginal people's lives, not understanding its importance and significance for them. Three non-Aboriginal HSPs expressed their concerns that Aboriginal patients may not be diagnosed because they were taking their traditional medicine and hence die from cancer.I think late stage because they don't seek medical advice. They don't go to clinics, they tend to use other [medicines], look after each other, like I said. “Oh I got tummy ache,”—“Have a drink of this,” Or, that's how I perceive it. (Urban non-Aboriginal HSP)

Non-Aboriginal participants expressed their concerns that a tumour could keep growing while Aboriginal patients were on the traditional medicines. Ultimately when they came in for medical attention, they might have an advanced stage of cancer. No Aboriginal participants raised such issues and some commented on people they knew who had remissions and improvements using bush medicine.

Shame and embarrassment: Disclosing a cancer diagnosis to family and friends was a matter of shame for some people and regarded as putting some people off seeking advice on their symptoms. Shame, to some traditional Aboriginal people, was associated with a past wrongdoing in the sense that some Aboriginal people might think, “… it's bad I deserve it, I've done something wrong. It's our way of taking that punishment” (urban non-Aboriginal HSP). Owing to cultural sensitivity attached to different body parts, shame and embarrassment were also related to cancer of particular types. Although embarrassment around cancers such as breast cancer is decreasing in Aboriginal communities, attributed to media coverage and public discussion about this cancer, it was reported as remaining for cervical and prostate cancers. Participants from some remote communities mentioned that the breast cancer screening van visiting the community is taken up as a social gathering with women enthusiastically gathering to do the health check-ups and breast screening.

Other forms of primary prevention through screening were reported as being inhibited with Aboriginal people being ‘shy to come to the doctors’ and not attending until the patients feel very sick. Aboriginal people were reported as not understanding the purpose and importance of screening and not wanting to bother the doctors until they are really sick.

Shame, for some men, was associated with the fear of losing their ‘pride as men’:He hated everything about the hospitals. He hated the food. He hated being restricted to a bed. He hated having to ask for things when he needed things. He is a very proud man. He is 84 years of age and, yes, a very proud man… a father of 12 kids. (Urban Aboriginal family member)

Fear and denial: Emotions such as fear, denial, worry about the diagnosis and after-effects impact on the help-seeking behaviour. Many Aboriginal people did not want bad news, opting to put off seeking help for their symptoms. There was also recognition that ‘cancer treatment makes you sick’, so some people avoided check-ups and care-seeking, not wanting to be diagnosed with cancer and to go for treatments.I try not to think of it, actually … laughing …. I suppose it's a bit of denial, isn't it? … It's one of those things that you hear about all the time, but you always think it won't happen to me …. It's like all these smokers… they hear all about this stuff about lung cancer and all the rest, but it's not gonna happen to them, so they keep smoking …. (Urban Aboriginal HSP)

Psychological trauma: Psychological suffering arises from even thinking about a cancer diagnosis for all patients, but for Aboriginal patients, such distress is also related to the ‘fear of the whole system’, and ‘fear of leaving home’ for treatment upon a cancer diagnosis. This is especially true for patients who would need to travel long distances to cancer centres, leaving behind family and country. One participant pointed out, “I think it's probably just traumatic, … it's traumatic for metro people to come to the hospitals and have treatment—but especially rural communities, the whole Perth [city] situation is traumatic” (rural Aboriginal family member). The collective memory of past experiences in the health system can add stress to the whole experience for Aboriginal people and affect their willingness to seek help for the symptoms.

Gender: Many participants identified a gender dimension, highlighting that men are reluctant to admit their symptoms and seek medical consultation “knowing it … depresses and stresses the men” (urban Aboriginal HSP). They added that it is not unique to Aboriginal men but that Aboriginal men may be more reluctant because of their past encounters with health services and gender stereotypes. This was particularly true for older Aboriginal men who had lived their whole life independently; they were often ashamed of admitting that they are unwell and depending on others.