Māori patients' experiences and perspectives of chronic kidney disease: A New Zealand qualitative interview study

Abstract

Objectives: To explore and describe Māori (the indigenous people of New Zealand) patients' experiences and perspectives of chronic kidney disease (CKD), as these are largely unknown for indigenous groups with CKD. Design: Face-to-face, semistructured interviews with purposive sampling and thematic analysis. Setting: 3 dialysis centres in New Zealand (NZ), all of which offered all forms of dialysis modalities. Participants: 13 Māori patients with CKD and who were either nearing the need for dialysis or had started dialysis within the previous 12 months. Results: The Māori concepts of whakamā (disempowerment and embarrassment) and whakamana (sense of self-esteem and selfdetermination) provided an overarching framework for interpreting the themes identified: disempowered by delayed CKD diagnosis (resentment of late diagnosis; missed opportunities for preventive care; regret and self-blame); confronting the stigma of kidney disease (multigenerational trepidation; shame and embarrassment; fear and denial); developing and sustaining relationships to support treatment decisionmaking (importance of family/whānau; valuing peer support; building clinician-patient trust); and maintaining cultural identity (spiritual connection to land; and upholding inner strength/mana). Conclusions: Māori patients with CKD experienced marginalisation within the NZ healthcare system due to delayed diagnosis, a focus on individuals rather than family, multigenerational fear of dialysis, and an awareness that clinicians are not aware of cultural considerations and values during decision-making. Prompt diagnosis to facilitate self-management and foster trust between patients and clinicians, involvement of family and peers in dialysis care, and acknowledging patient values could strengthen patient engagement and align decision-making with patient priorities.