Rachael C Walker1, Sally Abel2, Suetonia C Palmer3, Curtis Walker4, Nayda Heays5, David Tipene-Leach6. 1. Eastern Institute of Technology, Hawke's Bay, New Zealand. Electronic address: rwalker@eit.ac.nz. 2. Kaupapa Consulting Ltd, Napier, New Zealand. 3. Department of Medicine, University of Otago, Christchurch, New Zealand; Department of Nephrology, Canterbury District Health Board, Christchurch, New Zealand. 4. Department of Medicine, Midcentral District Health Board, Palmerston North, New Zealand. 5. Hawke's Bay District Health Board, Hastings, New Zealand. 6. Eastern Institute of Technology, Hawke's Bay, New Zealand.
Abstract
RATIONALE & OBJECTIVE: In Aotearoa/New Zealand, Indigenous Māori experience inequitable delivery of kidney transplantation despite disproportionately higher rates of kidney failure. This study describes Māori 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 Māori: 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: Māori 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.
RATIONALE & OBJECTIVE: In Aotearoa/New Zealand, Indigenous Māori experience inequitable delivery of kidney transplantation despite disproportionately higher rates of kidney failure. This study describes Māori 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 Māori: 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: Māori 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.