The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: A qualitative study

Abstract

Chronic kidney disease has a higher prevalence in Indigenous populations globally. The incidence of end-stage kidney disease in Australian Aboriginal people is eight times higher than non-Aboriginal Australians. Providing services to rural and remote Aboriginal people with chronic disease is challenging because of access and cultural differences. This study aims to describe and analyze the perspectives of Aboriginal patients' and health care providers' experience of renal services, to inform service improvement for rural Aboriginal hemodialysis patients. We conducted a thematic analysis of interviews with Aboriginal patients (n = 18) receiving hemodialysis in rural Australia and health care providers involved in their care (n = 29). An overarching theme of avoiding the “costly” crisis encompassed four subthemes: (1) Engaging patients earlier (prevent late diagnosis, slow disease progression); (2) flexible family-focused care (early engagement of family, flexibility to facilitate family and cultural obligations); (3) managing fear of mainstream services (originating in family dialysis experiences and previous racism when engaging with government organizations); (4) service provision shaped by culture (increased home dialysis, Aboriginal support and Aboriginal-led cultural education). Patients and health care providers believe service redesign is required to meet the needs of Aboriginal hemodialysis patients. Participants identified early screening and improving the relationship of Aboriginal people with health systems would reduce crisis entry to hemodialysis. These strategies alongside improving the cultural competence of staff would reduce patients' fear of mainstream services, decrease the current emotional and family costs of care, and increase efficiency of health expenditure on a challenging and increasingly unsustainable treatment system.

Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study

“…The significance of developing and sustaining trusting relationships among clinicians, family and the community has also been identified as central to improving health gains for Māori2 10 22 23 and other indigenous groups 12. Previous literature has identified poor communication between indigenous patients and clinicians11–14 as a barrier to Māori accessing quality and effective healthcare and our study supports this and may explain the number of Māori developing ESKD from diabetes.…”

“…The patient experiences in this study are concordant with the perspectives of Aboriginal and Torres Strait Islander patients treated with haemodialysis on ways to improve dialysis care including: the importance of family and relationships within healthcare models and service delivery; the need for service provision aligned with cultural preferences; and fear of healthcare processes generated by intergenerational dialysis experiences 12. These findings are also consistent with evidence that delayed initial CKD diagnosis is a potential cause of inequity in healthcare experiences and outcomes for Māori17 18 and may account for later presentations to renal services among indigenous groups, preventing adequate preparation for home dialysis, permanent vascular access and pre-emptive kidney transplantation 19–21…”

“…Inequities in provision of preventative care, delayed specialist referral and lower life expectancy among indigenous peoples have been extensively quantified and explored using epidemiological methods, but remain incompletely explained by conventional individual and community risk factors for worse health outcomes, including socioeconomic opportunity and comorbidity 11. Previous international research has highlighted specific issues for indigenous groups in chronic kidney disease (CKD) such as providing culturally competent care,12 13 the need for flexible family-focused care, managing patient fear of mainstream services12 and miscommunication;14 however, these issues have not been explored among Māori patients with CKD. This study aims to describe Māori patients' beliefs and experiences of CKD which may elucidate additional contextual, social and organisational factors that contribute to the persistent inequities in health outcomes among Māori with CKD.…”

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.…”

Non‐clinical eye care support for Aboriginal and Torres Strait Islander Australians: a systematic review

“…Examples of non‐clinical support include reducing anxiety about new diagnoses, interpreting biomedical information, and enabling cultural safety . Family and community members play key roles in providing non‐clinical support, including facilitating and motivating attendance at appointments, accompanying patients to health services to alleviate their anxiety, participating in shared care, and enhancing the effectiveness of preventive health promotion activities …”