This study examined barriers and enablers to accessing primary and specialist palliative care services for Cook Islands Māori living in New Zealand. The authors sought to collaborate directly with community members to explore how a tailored palliative care model could be practically implemented. The work represents the first phase of model validation, focused on gathering community voice to inform subsequent development.
Data were collected using culturally responsive methods. The research was guided by Tivaevae, a Pacific methodology used to shape both data collection and analysis to be culturally congruent with participants’ worldviews. The project established an advisory group to provide cultural and clinical oversight, ensuring that interpretation and potential model components remained grounded in both community values and clinical realities.
Three focus group interviews were held with Cook Islands Māori community members, with a total sample size of 18 participants. The focus group format was used to elicit community perspectives, identify common experiences with health services, and explore practical pathways for a culturally responsive palliative care model. The abstract reports the sample size and focus group method but does not provide further demographic breakdowns in the source text.
Participants identified prognostic disclosure as a key moment when families required clear and accessible health information. At points when prognosis is discussed, community members need information presented in ways that reflect their cultural context, language preferences, and faith-based understandings. The study highlights that appropriate communication at prognostic disclosure can help families prepare and make informed choices about care.
Another critical moment identified was the transfer of caregiving responsibility. When care responsibilities shift within the family or between family and health services, families reported needing explicit guidance, resources, and culturally relevant support to manage these transitions. Providing clear information at these junctures was framed as essential to enable families to assume caregiving roles effectively.
The research findings frame prognostic disclosure and responsibility transfer as opportunities to equip families with practical tools to care and plan. When provided with accessible information and supports at these moments, families are better able to choose their preferred place of care. The study suggests that enabling families to develop skills and plans supports decision making that aligns with cultural and faith priorities.
Participants described the potential to create family or community-guided care pathways that are rooted in Cook Islands Māori cultural practices and faith. Such pathways would prioritize family involvement, culturally congruent decision making, and settings of care that reflect community preferences. The study positions these pathways as a practical output of tailoring palliative care services to minority and indigenous populations.
The authors note that while progress has been made in improving cultural safety and cross-cultural communication, barriers persist for some groups in accessing palliative care. The study underscores that conceptual models describing beliefs, motivations, and values are useful, but must be operationalizable. Models need to be usable by both community members and clinicians, and they must support meaningful and positive outcomes for patients and families.
The abstract reports the core aims, methods, and primary findings from the first phase of model validation but does not provide detailed demographic data, full transcripts, or stepwise model components within the source text. Specifics on timelines, recruitment processes, participant demographics beyond total n, or the subsequent phases of implementation were not reported in the abstract.
This community-engaged qualitative study identifies specific moments—prognostic disclosure and responsibility transfer—where culturally responsive communication and supports can meaningfully improve access to and the usefulness of palliative care for Cook Islands Māori in New Zealand. The work emphasizes co-design with communities, culturally appropriate methodologies such as Tivaevae, and the need for care models that are practical for both clinicians and community members to use and that produce positive outcomes.