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 self-determination) 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 decision-making (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.

Keywords: NEPHROLOGY; QUALITATIVE RESEARCH.

Figure 1

Thematic schema of Māori patients’ experiences and perspectives of chronic kidney disease (CKD). Delayed initial CKD diagnosis and missed opportunities for preventive care and loss of trust and disengagement with health services influenced all other aspects of CKD care for Māori patients and led to embarrassment and disengagement of kidney disease and dialysis (Whakamā). Poor communication led to difficulty in patients translating clinical information to enable self-management, and feeling inadequate during clinical encounters. Multigenerational and community experiences of kidney disease invoked fear, which isolated patients from peer and family support accentuated by an individual-based approach to decision-making and education. Having trusting and reciprocated relationships with clinicians was integral to engaging fully with dialysis preparation, enabled self-care, and enhanced inclusion and engagement in patient decision-making. Feeling listened to and being confident to seek support within and outside of their families enabled patients to choose treatments that sustained cultural identity, standing and roles within the community.