Māori elders’ perspectives of end-of-life family care: carers as knowledge holders, weavers, and navigators

Abstract

Background: There is growing interest in palliative care within Indigenous communities, and within Aotearoa New Zealand, of the significant role that Māori (Indigenous people) families play in caring for older relatives. This study explored the centrality of culture in how Māori extended families ( whānau ) in Aotearoa New Zealand interpret and enact family-based care roles within the Māori world ( Te Ao Māori ). Methods: Applying Māori-centered and community-based participatory research principles, we examined 17 interviews with older Māori who shared experiences of palliative care for a partner or family member. The thematic analysis used a cultural-discursive framework incorporating Māori principles of wellbeing and values expressed within the care relationship. Results: The findings centered on three whānau roles in palliative care: whānau as (1) Holders and protectors of Māori knowledge; (2) Weavers of spiritual connection; and (3) Navigators in different worlds. Conclusion: The study problematizes the notion of a single ‘primary caregiver’, privileges whānau as an inter-woven relational, dynamic care network, and encourages health professionals to recognize the cultural embeddedness of dominant approaches to palliative care.