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

Abstract

ObjectivesAustralian 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.DesignA 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.SettingA health district in rural New South Wales, Australia.ParticipantsSnowball sampling recruited 18 Aboriginal haemodialysis recipients.ResultsSix 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.ConclusionsFamily 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.

Priorities and challenges for a palliative approach to care for rural indigenous populations: A scoping review

“…Geographic distance and remoteness are factors that may influence both access to palliative services, referral to palliative specialty services and the quality of palliative care available to patients (Rix et al., ; Willis, ; McGrath, ). For instance, limited access of Indigenous patients to healthcare often results in late diagnosis of complex chronic illnesses which may result in further complications (Rix, Barclay, Stirling, Tong, & Wilson, ; Smith, ) or late referral to palliative care services (Smith, ; O'Brien et al., ; Shahid, Bessarab, van Schaik, Aoun, & Thompson,; Poroch, ; Shih & Honey, ). Unreliable road conditions and isolation may also create constraints in the delivery of palliative care (McGrath, ).…”

“…A longstanding colonial history is a strong cause for mistrust and even fear of the mainstream healthcare system (Kitzes & Berger, 2004). Many Indigenous individuals wish to receive palliative care services at home and do not want to relocate (McGrath, 2006a(McGrath, , 2006bMcGrath, 2007aMcGrath, , 2007bRix et al, 2014). For elders who have survived the residential school system, a threat of re-institutionalisation may be a determining factor (Castleden, Crooks, Hanlon, & Schuurman, 2010).…”

“…Notably, family involvement may also play a role in promoting early screening for palliative patients (Rix et al, 2014). Yet greater local hospice support may be required to provide respite for family caregivers and to ensure better health outcomes for patients (McGrath et al, 2006;Rix et al, 2014). Despite the challenges, Indigenous patients often express that they would prefer to die at home although many of them do not (DeCourtney et al, 2003;Kelly & Minty, 2007;McGrath, 2007aMcGrath, , 2007bO'Brien et al, 2013;Rix et al, 2014).…”

Research Priorities in CKD: Report of a National Workshop Conducted in Australia

“…[38][39][40][41] Relevant, effective, and culturally respectful approaches require a mutually respectful partnership framework, ongoing relationships and engagement, capacity building and active involvement of indigenous staff, an understanding of communities' past and present experiences of research, recognition of the diversity of indigenous populations, and support for community ownership. 42 The prioritized research questions generated in our study still need to be mapped against published and ongoing research to identify questions that address uncertainties in existing evidence.…”

Compartmentalising time and space: a phenomenological interpretation of the temporal experience of commencing haemodialysis

“…, Rix et al . ). The rapid shift in lived experience from a healthy person to a person who must spend almost half their days on dialysis leaves people underprepared emotionally, educationally and socially (Lin et al .…”