"We Need a System that's Not Designed to Fail Maori": Experiences of Racism Related to Kidney Transplantation in Aotearoa New Zealand.

BACKGROUND: Reported experiences of racism in Aotearoa New Zealand are consistently associated with negative measures of health, self-rated health, life satisfaction, and reduced access to high-quality healthcare with subsequent poor health outcomes. In this paper, we report on perceptions and experiences of prejudice and racism by Indigenous Maori with kidney disease and their family members and donors who took part in a wider study about experiences of kidney transplantation. METHODS: We conducted semi-structured interviews with 40 Maori between September and December 2020. Participants included those with kidney disease who had considered, were being worked up for, or who had already received a kidney transplant as well as family members and potential or previous donors. We examined the data for experiences of racism using a theoretical framework for racism on three levels: institutionalised racism, personally mediated racism, and internalised racism. RESULTS: We identified subthemes at each level of racism: institutional (excluded and devalued by health system; disease stigmatization; discriminatory body weight criteria, lack of power), personally mediated (experiencing racial profiling; explicit racism), and internalized racism (shame and unworthiness to receive a transplant). CONCLUSIONS: The wide-reaching experiences and perceptions of racism described by participants with kidney disease and their families in this research point to an unfair health system and suggest that racism may be contributing to kidney transplantation inequity in Aotearoa New Zealand. Addressing racism at all levels is imperative if we are to address inequitable outcomes for Maori requiring kidney transplantation.

Values, Perspectives, and Experiences of Indigenous Maori Regarding Kidney Transplantation: A Qualitative Interview Study in Aotearoa/New Zealand.

RATIONALE & OBJECTIVE: In Aotearoa/New Zealand, Indigenous Maori experience inequitable delivery of kidney transplantation despite disproportionately higher rates of kidney failure. This study describes Maori patients' and families' values, perspectives, and experiences related to kidney transplantation. STUDY DESIGN: Qualitative interview study. SETTING & PARTICIPANTS: We conducted 40 in-depth interviews of 40 Maori: 8 who had received a transplant, 20 with chronic kidney disease (which included 10 on the deceased donor transplant list, 9 who were interested in transplantation and not currently waitlisted or who were ineligible for waitlisting, and 1 who was not interested in transplantation), 4 live-kidney donors, and 8 family members including 6 who had experiences with donor assessment. ANALYTICAL APPROACH: Data were analyzed inductively to generate themes and a conceptual framework. RESULTS: We identified 5 major themes: actively seeking a kidney transplant; evolving attitudes toward traditional values and practices; being confronted by interpersonal and systemic racism; poor information and communication; and challenged by social determinants of health. LIMITATIONS: Participants were recruited nationally through patient advocacy organizations and 1 regional kidney service. Potential participants unrelated to these groups or region could not be included. CONCLUSIONS: Maori participants were highly motivated to seek kidney transplantation and were inspired by positive experiences through donating and receiving a kidney. However, they faced barriers including social determinants, racism, and lack of information that impacted both direct experiences of transplantation and access to transplantation services.