“The doctors will tell you things that they understand – Not what we understand.” Community Voices on Developing a Palliative Care Model for Cook Islands Māori in New Zealand

Abstract

Objectives This study aimed to identify the enablers and barriers to accessing primary and specialist palliative care services for Cook Islands Māori in New Zealand, and to collaborate with community members to explore the practical application of a tailored palliative care model

Methods Three focus group interviews were held with Cook Islands Māori community members (n = 18). A culturally responsive research methodology, Tivaevae, was used to guide data collection and analysis. An advisory group was established to provide cultural and clinical oversight.

Results This study presents the findings from the first phase of model validation, exploring Cook Islands Māori peoples' use of palliative care services in New Zealand. The study identified key moments when families needed clear and accessible health information, during prognostic disclosure and during moments of responsibility transfer. These key moments provide opportunities for families to develop the tools to care and plan. This, in turn, enables family members to choose their preferred place of care and to develop family or community-guided care pathways based on Cook Islands Māori culture and faith.

Significance of results While improvements in cultural safety and cross-cultural communication have been made, there are still groups who experience barriers to accessing palliative care. Identifying key moments when care can be enhanced is key to developing systems that can deliver culturally responsive care for minority groups. Conceptual models show the beliefs, motivations, and values that guide care. However, models must be usable for both community members and clinicians, and critically, must support meaningful and positive outcomes.