‘Beats the alternative but it messes up your life’: Aboriginal people's experience of haemodialysis in rural Australia

OBJECTIVES: Australian Aboriginal people have at least eight times the incidence of end-stage kidney disease, requiring dialysis, as the non-Aboriginal population. Provision of health services to rural Aboriginal people with renal disease is challenging due to barriers to access and cultural differences. We aimed to describe the experiences of Aboriginal people receiving haemodialysis in rural Australia, to inform strategies for improving renal services. DESIGN: A qualitative design incorporating: Indigenist research methodology and Community Based Participatory Research principles. In-depth interviews used a ‘yarning’ and storytelling approach. Thematic analysis was undertaken and verified by an Aboriginal Community Reference Group. SETTING: A health district in rural New South Wales, Australia. PARTICIPANTS: Snowball sampling recruited 18 Aboriginal haemodialysis recipients. RESULTS: Six themes emerged which described the patient journey: ‘The biggest shock of me life,’ expressed the shock of diagnosis and starting the dialysis; ‘Beats the alternative but it messes up your life,’ explained how positive attitudes to treatment develop; ‘Family is everything’, described the motivation and support to continue dialysis; ‘If I had one of them nurses at home to help me’, depicted acute hospital settings as culturally unsafe; ‘Don't use them big jawbreakers’, urged service providers to use simple language and cultural awareness; ‘Stop ‘em following us onto the machine’, emphasised the desire for education for the younger generations about preventing kidney disease. An Aboriginal interpretation of this experience, linked to the analysis, was depicted in the form of an Aboriginal painting. CONCLUSIONS: Family enables Aboriginal people to endure haemodialysis. Patients believe that priorities for improving services include family-centred and culturally accommodating healthcare systems; and improving access to early screening of kidney disease. Inclusion of Aboriginal patients in cultural education for renal staff is recommended. Providing opportunities for patients to educate young Aboriginal people about kidney disease prevention may be highly effective and empowering.