Objectives: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients’ engagement with their treatment.
Design, setting and participants: Qualitative study conducted in 2005–2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services.
Results: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations.
Conclusions: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.
- 1. Cass A, Cunningham J, Snelling P, et al. Renal transplantation for Indigenous Australians: identifying the barriers to equitable access. Ethn Health 2003; 8: 111-119.
- 2. Pound P, Britten N, Morgan M, et al. Resisting medicines: a synthesis of qualitative studies of medicine taking. Soc Sci Med 2005; 61: 133-155.
- 3. Krespi R, Bone M, Ahmad R, et al. Haemodialysis patients’ beliefs about renal failure and its treatment. Patient Educ Couns 2004; 53: 189-196.
- 4. Lawton J, Ahmad N, Peel E, Hallowell N. Contextualising accounts of illness: notions of responsibility and blame in white and South Asian respondents’ accounts of diabetes causation. Sociol Health Illn 2007; 29: 891-906.
- 5. Parry O, Peel E, Douglas M, Lawton J. Issues of cause and control in patient accounts of type 2 diabetes. Health Educ Res 2006; 21: 97-107.
- 6. Witenberg SH, Blanchard EB, Suls J, et al. Perceptions of control and causality as predictors of compliance and coping in hemodialysis. Basic Appl Soc Psych 1983; 4: 319-336.
- 7. Cass A, Cunningham J, Snelling P, et al. Exploring the pathways leading from disadvantage to end-stage renal disease for Indigenous Australians. Soc Sci Med 2004; 58: 767-785.
- 8. Cass A, Lowell A, Christie M, et al. Sharing the true stories: improving communication between Aboriginal patients and healthcare workers. Med J Aust 2002; 176: 466-470. <MJA full text>
- 9. Devitt J, Cass A, Cunningham J, et al. Study protocol — Improving Access to Kidney Transplants (IMPAKT): a detailed account of a qualitative study investigating barriers to transplant for Australian Indigenous people with end-stage kidney disease. BMC Health Serv Res 2008; 8: 31.
- 10. Warnecke RB, Johnson TP, Chavez N, et al. Improving question wording in surveys of culturally diverse populations. Ann Epidemiol 1997; 7: 334-342.
Publication of your online response is subject to the Medical Journal of Australia's editorial discretion. You will be notified by email within five working days should your response be accepted.