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

Marianne Kerr, Allison Jaure, Jacqueline H Stephens, Siah Kim, Richard Cutler, Brydee Cashmore, Michelle Dickson, Nicole Evangelidis, Jaquelyne Hughes, Ieyesha Roberts, Nicole Scholes-Roberston, Victoria SInka, Jonathan Craig

Research output: Contribution to journalReview articlepeer-review

2 Citations (Scopus)

Abstract

Rationale & Objective
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.

Study Design
A systematic review of published qualitative interview studies.

Setting & Study Populations
Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries.

Selection Criteria for Studies
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.

Data Extraction
Characteristics of each study were extracted into Microsoft Excel for quality assessment.

Analytical Approach
Data were analyzed using thematic synthesis.

Results
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).

Limitations
We only included articles published in English.

Conclusions
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.
Original languageEnglish
Pages (from-to)139-150.e1
Number of pages13
JournalAmerican Journal of Kidney Diseases
Volume83
Issue number2
Early online date18 Sept 2023
DOIs
Publication statusE-pub ahead of print - 18 Sept 2023

Keywords

  • Accessibility
  • dialysis
  • Indigenous
  • kidney care
  • inequity
  • qualitative research

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