“All they said was my kidneys were dead”: Indigenous Australian patients’ understanding of their chronic kidney disease

Kate Anderson, Jeannie Devitt, Joan Cunningham, Cilla Preece and Alan Cass
Med J Aust 2008; 189 (9): 499-503. || doi: 10.5694/j.1326-5377.2008.tb02144.x
Published online: 3 November 2008

Indigenous Australians bear a disproportionate share of the burden from chronic kidney disease. Due to ongoing poor access to kidney transplantation,1 the mainstay of treatment for their end-stage kidney disease (ESKD) is physically and socially demanding maintenance haemodialysis. Patients have the onerous responsibility of attending dialysis three times a week, taking multiple medications and following strict dietary restrictions.

Exploring accounts of patients’ “lived experience” of chronic disease can provide insights into their engagement with treatment.2 How patients understand their disease and its causation moderates their coping with, and participation in, treatment.3-6 Understanding the causes of chronic kidney disease can be difficult, with current biomedical thinking pointing to environmental, lifestyle, developmental and genetic factors.7 This complexity challenges effective communication with patients, and such difficulties are intensified in cross-cultural settings, aggravated by differences in language and in views on health and illness.8

As part of a larger investigation of barriers faced by Indigenous Australians in obtaining a transplant, we aimed to explore the views of Indigenous Australians with ESKD compared with those of other patients through in-depth interviews. We investigated patients’ views on causation and explored how their views might affect their coping and engagement with treatment.

Study design

A large interview study was conducted in 2005–2006 as part of the IMPAKT (Improving Access to Kidney Transplants) study.9 Five investigators conducted semistructured, in-depth interviews with patients with ESKD, their health professionals and other relevant people. Wherever possible, we used peer-to-peer interviews: a nephrologist interviewed the nephrologists, and an Indigenous Australian researcher interviewed many of the Indigenous Australian patients.

The interview structure aimed to elicit a life-story narrative that made sense to the patient.10 The conversational frame, recognisable and engaging for patients, covered personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. Analysis here focuses on the patients’ descriptions of the history of their illness, particularly of perceived causes.


Interviews were conducted with 146 Indigenous and 95 non-Indigenous ESKD patients in four states and the Northern Territory (Box).

There was great diversity in patients’ views and understanding about causation of kidney disease. The Indigenous Australians’ responses differed markedly from those of non-Indigenous respondents: uncertainty and disconnection from information were typical. This fostered ambivalence about biomedical explanations, which, in turn, affected their engagement with treatment.

Three interrelated factors are explored below: uncertainty about causation and perceived exclusion from information; frequent but tentative reporting of lifestyle factors; and ambivalence towards biomedical explanations.

Uncertainty about causation and perceived exclusion from information

Uncertainty about what had caused their disease was common among Indigenous Australians. Many were unaware of or speculated about causes. They felt strongly that they were inadequately informed, were frustrated, and wanted more information.

An Aboriginal man aged in his mid 40s, M1, who had been on haemodialysis for 1–2 years, was living in a regional community before commencing dialysis. He then began renting city accommodation to obtain treatment at a major hospital, and attended an Aboriginal Medical Service for other health issues. His first language is English, and he was educated to early secondary school level. His mother had been on dialysis before she died.

These comments are typical of Indigenous Australians’ accounts. When asked about causation, almost a third said they did not know or could not speculate. Like M1, other people suggested that their health professionals were also unsure.

Several patients, both Indigenous and non-Indigenous, described receiving varying explanations from different health professionals. Many were waiting for more information, perceiving it to be the responsibility of the health professional to provide information, rather than theirs to seek it.

Another articulated difficulty in asking for information:

The translated response of a Pitjantjatjara-speaking patient, asked why he did not seek more information, echoes this difficulty:

By contrast, non-Indigenous respondents displayed greater confidence in their knowledge. Their accounts did not exhibit a similar sense of disconnection from sources of information. When asked about the cause of her disease, one non-Indigenous respondent replied:

Some Indigenous Australians pointed to difficulty understanding the language and terminology of health professionals.

Others said that they might have been told the cause at the start of treatment, but were too ill to understand. One young woman, recently rushed onto dialysis after collapsing, said:

Some regarded the lack of information as deliberate withholding. M1 was sceptical and felt that he was not privy to all the information — “only when it’s called for”. In the translated words of a Pitjantjatjara-speaking patient:

For many, their sense of disconnection from information left them feeling ignorant and disempowered.

A widespread desire for more information was clearly articulated. A Pitjantjatjara-speaking patient indicated how such uncertainty can torment people:

Frequent but tentative reporting of lifestyle factors

Respondents identified many potentially causative factors, in six broad categories:

Non-Indigenous Australians most commonly identified having a pre-existing disease or illness as a factor. Indigenous Australians spoke more about lifestyle-related factors, which were rarely mentioned by non-Indigenous respondents. However, many Indigenous Australians seemed tentative about the extent to which these factors were responsible for their disease. The role of alcohol was a particular source of confusion: Indigenous Australians often reported receiving mixed messages from health professionals.

While poor diet, alcohol, smoking, stress and lack of exercise accounted for almost half of all factors cited by Indigenous Australians, the causative role of these factors confused and mystified many.

Some of the Indigenous Australians who identified lifestyle factors blamed themselves, while others pointed to external causes, such as the lack of disease prevention information.

Many Indigenous Australians commented on the role of alcohol. This common causal association was described by some as a source of distressing stigmatisation of dialysis patients.

M2, an Aboriginal man aged in his mid 40s, had been receiving haemodialysis in a remote unit for 1–2 years, lived in and owned his own home, and was employed full-time before starting dialysis. English is not his first language.

While some patients, like M2, reported being told that their disease was due to alcohol, others had been told that alcohol was not causative. Some Indigenous Australians wanted to warn their family and community that alcohol misuse caused kidney disease.

Ambivalence towards biomedical explanations

A certain ambivalence towards biomedical explanations was common in Indigenous Australians. Unlike their non-Indigenous counterparts, they described some scepticism and mistrust of the explanations given by health professionals. This was heightened by their perceived lack of information, as well as by incongruities between their understanding of biomedical explanations and their own experiences, observations and beliefs.

The following interview excerpt reveals some of these conflicts, which undermine trust in health professionals’ explanations and advice. M3, who is married and aged in his mid 40s, had been on haemodialysis in a satellite dialysis unit in a major metropolitan area for 1–2 years. He was living in a hostel in a major city to obtain treatment. Previously, M3 and his wife lived in a very remote community, where he was employed full-time. English is not his first language.

I knew that I was sick, because of my diabetes. I was on tablets, which I didn’t take my tablet sometime ... I knew it, that’s all. ... But I said, “I gotta do my own things. I’m a bushman. I go out fishing, do my cultural stuff”. And you know, I think, to me, the way of being treated by the health people, I’m talking the medication stuff, I think the [diabetes] medication didn’t work on me. It didn’t work. It couldn’t change my situation. Because when I started like going out, doing my cultural stuff — going out fishing, dugong, turtle, mangrove worms — that changed me a bit. And I started being like smart-arse, smart, you know, talking to the doctor, ignoring him and all this. And he said, “You getting sicker and sicker because you’ve got sugar, you got diabetes”. I said, “I know I’m a diabetic bloke, I gotta stay in the bush, that’s what I do. I look after myself. And you’re telling me my kidney’s gone?” I said, “I can’t believe that because, in the first place, you should come over. Come over and talk to us people, you know. We won’t chase you with a spear or something. Come and sit with us, you know, you’re welcome to come and tell us. We want to know all these things”. And [health providers] say, “Hey, you’re taking too much sugar, take it easy”. “Sugar’s nothing!”, some [Aboriginal] people say — I’m talking about old generation — “Why you telling me about my diabetes? In the first place, who brought the sugar here? You!” They point to the white people, you know. “You brought the sugar here. We can’t stop now because you caught us, it’s sweet! We like it! [laughter] You can’t tell us to stop!”

Beyond his ambivalence, M3 describes a broader scepticism towards biomedical explanations, which is, he believes, common within his community. Other respondents pointed to the introduction of Western food and lifestyle as the major cause.

Another pointed specifically to sugar:

The historical, cultural and social background of Indigenous Australians means that trust in the advice of health professionals is not assured. Doubts about the truth and motives behind biomedical diagnoses are apparent in varying degrees.

Few of the causes to which Indigenous Australians attributed their illness were “spiritual” or “religious”; most that were directly reported accord with biomedically recognised risk factors. While describing their own condition in these terms, some suggested that other community members thought differently.

This kind of indirect reporting of attributed causes might also be a way to express ideas about which people are undecided, tentative or wary of a negative reaction from non-Indigenous people.


In 2002, after analysing videotaped interactions between patients and health care professionals in a Darwin dialysis unit, the “Sharing the true stories” team reported pervasive miscommunication and a lack of shared understanding of fundamental concepts concerning kidney disease.8 Our current project, amalgamating insights from 146 Indigenous Australians receiving treatment in urban, rural and remote sites across Australia, shows that little has changed. More alarmingly, it notes Indigenous Australians’ frustration and ambivalence and suggests potent reasons for their apparent “non-compliance” with treatment.

Many Indigenous patients articulated a strong desire to be better informed and outlined the difficulties and tensions experienced in obtaining and understanding such information. Non-Indigenous respondents, by contrast, were substantially more confident. Indigenous Australians feel excluded from information, alienated from the health care system, and have difficulties engaging in treatment. Confusion and stigma surrounding lifestyle factors, particularly alcohol misuse, further perplex them.

Consistent with Lawton and colleagues’ theories,4 our findings support the notion that patients’ everyday experiences and their broader social, historical and cultural circumstances together influence their views and understanding about health and illness. The ambivalence of some Indigenous Australians towards biomedical explanations clearly weakened their confidence in the prescribed treatment regimen and their ability or resolve to engage with it. Their common reports of waiting for more information might be interpreted by health professionals as a lack of interest — of patients failing to ask for information. When patients seem to lack interest or motivation, providers are unlikely to persist in attempting to better inform them, creating a vicious cycle of inadequate education and patient disengagement.

Merely providing information is not effective education; the quality of the communication and the appropriateness of the information are crucial to their efficacy. The mode, timing and clarity of education all emerged as key barriers (and possibly key future facilitators) to improving patients’ understanding of both their illness and their need for treatment. Furthermore, the dearth of Indigenous Australian health care staff emerged as a key barrier to adequate communication.

More effective and appropriate communication and education are clearly required. The commonly held view that Indigenous Australians do not engage with their treatment regimen should be reconsidered in the light of their low levels of awareness of, and confidence in, biomedical explanations. Until we reach a shared understanding and address pervasive miscommunication, there is little chance that health outcomes for Indigenous Australians with kidney disease will substantially improve.

Received 23 March 2008, accepted 8 July 2008

  • Kate Anderson1
  • Jeannie Devitt1,2
  • Joan Cunningham3,4
  • Cilla Preece5
  • Alan Cass1,6

  • 1 The George Institute for International Health, Sydney, NSW.
  • 2 Cooperative Research Centre for Aboriginal Health, Darwin, NT.
  • 3 Menzies School of Health Research, Darwin, NT.
  • 4 Institute of Advanced Studies, Charles Darwin University, Darwin, NT.
  • 5 Cairns Diabetes Centre, Queensland Department of Health, Cairns, QLD.
  • 6 Faculty of Medicine, University of Sydney, Sydney, NSW.



We gratefully acknowledge the support of the study participants, participating treatment sites and their associated reference groups. We also thank the participating Aboriginal community-controlled health services. This study was undertaken as part of the IMPAKT Study, funded by the National Health and Medical Research Council (NHMRC), Project Grant No. 236204. Alan Cass was supported by an NHMRC Senior Research Fellowship (No. 457101). Kate Anderson was partially funded through an Australian Postgraduate Research Scholarship. Joan Cunningham was supported by an NHMRC Career Development Award (No. 283310). Through endorsement as an “in-kind” project, IMPAKT was supported by the Co-operative Research Centre for Aboriginal Health (CRCAH), Darwin, to provide participant feedback, to fund NVivo training (Cilla Preece), and institutional support (Jeannie Devitt). The Menzies School of Health Research funded NVivo training (Jeannie Devitt). The NHMRC, CRCAH and Menzies School had no role in study design, data collection, analysis or interpretation, or in writing of the article. They had no control or influence in the decision to submit the final manuscript for publication. We thank Dr Peter Arnold for assistance with preparing this article.

Competing interests:

None identified.

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