Abstract
BackgroundKidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), however Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients. We describe Indigenous peoples’ experiences and perspectives including traditional values around kidney transplantation to inform international transplant programs.MethodsWe conducted a systematic review of qualitative studies involving Indigenous adults who have experience with or perceptions of kidney transplantation. We searched MEDLINE, Embase, PsychINFO, and CINAHL, in conjunction with analysis of Google Scholar and reference lists of related studies till July 2019. We utilised thematic synthesis to analyse data. Completeness of reporting in studies was evaluated using the Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework.ResultsEight studies involving 225 Indigenous participants were included. Five themes were identified: strong desire for transplantation (seeking normality and freedom from dialysis, wanting to reduce burden of disease within community); lack of partnership in shared decision-making (receiving inadequate information, ineffective communication); barriers to live kidney donation (difficulty asking, apprehension about impact on donor, avoiding additional financial burden and fear of complications); cultural considerations (influence of traditional values and beliefs, reconciling traditional values with pragmatic need); and experiencing lack of cultural competence in clinical care (struggling with prejudice and ignorance, mistrust of clinicians and health system).ConclusionIndigenous participants had a strong desire for a kidney transplant and recognised the need for more readily available kidney transplants for others in their communities with ESKD. However, they faced prejudice and a lack of cultural competence by health workers as well as wider barriers to transplantation in systems that did not support effective and culturally appropriate delivery of information and care. Traditional cultural values also influenced decisions regarding kidney transplantation but such values were moderated when considering transplantation. Transplantation programs need to identify and mitigate barriers, such as the financial burden, promote cultural safety and incorporate traditional values into the promotion of transplantation in order to address inequitable transplantation rates.RegistrationNot applicable.
Highlights
Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients
Non-Indigenous populations have substantially lower rates of ESKD and experience greater access to the waiting list for kidney transplantation even when accounting for socioeconomic factors, geographical location and comorbidity [4, 5], suggesting that systemic barriers play a role in the inequitable rate of kidney transplants
In this systematic review of qualitative studies we aimed to answer the research question, “What are the experiences, perspectives and values of Indigenous peoples regarding kidney transplantation”, in order to identify systemic barriers and understanding of cultural values that may influence the uptake of kidney transplantation by Indigenous peoples
Summary
Kidney transplantation is considered best practice treatment for end stage kidney disease (ESKD), Indigenous patients are substantially less likely to receive either a deceased or live donor kidney transplant than non-Indigenous patients. Non-Indigenous populations have substantially lower rates of ESKD and experience greater access to the waiting list for kidney transplantation even when accounting for socioeconomic factors, geographical location and comorbidity [4, 5], suggesting that systemic barriers play a role in the inequitable rate of kidney transplants. With particular regard to Indigenous patients with ESKD, identified barriers include distrust of health care systems, lack of knowledge of kidney transplantation processes and discrimination [5]. Despite this previous research exploring these barriers, there have been few studies exploring whether the perspectives and cultural values of Indigenous individuals can enhance understanding of these inequities and inform transplantation care and improvement
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