Experiences of Indigenous Patients Receiving Dialysis: Systematic Review of Qualitative Studies

• Published in: American journal of kidney diseases Vol. 83; no. 2; pp. 139 - 150.e1
• Main Authors: Kerr, Marianne, Jaure, Allison, Stephens, Jacqueline H, Kim, Siah, Cutler, Richard, Cashmore, Brydee, Dickson, Michelle, Evangelidis, Nicole, Hughes, Jaquelyne T, Roberts, Ieyesha, Scholes-Robertson, Nicole, Sinka, Victoria, Craig, Jonathan C
• Format: Journal Article
• Language: English
• Published: United States 01.02.2024
• Subjects: Adolescent; Adult; Chronic Disease; Health Services Accessibility; Humans; Indigenous Peoples; Kidney Diseases - therapy; Qualitative Research; Renal Dialysis; dialysis; inequity; qualitative research; Accessibility; Indigenous; kidney care
• ISSN: 0272-6386; 1523-6838; 1523-6838
• DOI: 10.1053/j.ajkd.2023.07.014

Indigenous People suffer a high burden of kidney disease. Those receiving maintenance dialysis have worse outcomes compared with similarly treated non-Indigenous patients. We characterized the experiences of Indigenous patients receiving dialysis in British-colonized countries to gain insights into which aspects of kidney care may benefit from improvement. A systematic review of published qualitative interview studies. Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries. Search terms for Indigenous Peoples, dialysis, and qualitative research were entered into Medline, Embase, PsycINFO, and CINAHL and searched from inception to January 5, 2023. Characteristics of each study were extracted into Microsoft Excel for quality assessment. Data were analyzed using thematic synthesis. The analysis included 28 studies involving 471 participants from Australia, New Zealand, Canada, and the United States. We identified four themes: centrality of family and culture (continuing dialysis for family, gaining autonomy through shared involvement, balancing primary responsibility to care for family); marginalization due to structural and social inequities (falling through gaps in primary care intensifying shock, discriminated against and judged by specialists, alienated and fearful of hospitals, overwhelmed by travel, financial and regimental burdens); vulnerability in accessing health care (need for culturally responsive care, lack of language interpreters, without agency in decision-making, comorbidities compounding complexity of self-management); and distress from separation from community (disenfranchisement and sorrow when away for dialysis, inability to perpetuate cultural continuity, seeking a kidney transplant). We only included articles published in English. Indigenous patients receiving dialysis experience inequities in health care that compound existing accessibility issues caused by colonization. Improving the accessibility and cultural responsiveness of dialysis and kidney transplant services in collaboration with Indigenous stakeholders holds promise to enhance the experience of Indigenous patients receiving dialysis. Worldwide Indigenous populations suffer a high incidence of chronic disease leading to lower life expectancy, particularly for kidney disease, an insidious condition requiring long-term dialysis treatment. By listening to Indigenous dialysis patients' stories, we hoped to understand how to improve their experience. We gathered 28 qualitative research studies from four countries reporting Indigenous adults' experiences of dialysis. They described lacking awareness of kidney disease, poor access to health services, systemic racism, inadequate cultural safety, and being dislocated from family, community, and culture. These findings indicate that respectful collaboration with Indigenous Peoples to craft and implement policy changes holds promise to improve prevention, integrate culturally responsive health care practices, and provide better access to local dialysis services and opportunities for kidney transplants.