'In our culture, we come when you die': Qualitative descriptive analysis of end-of-life perspectives in a reservation-based community.

AIM

To explore (1) perspectives and attitudes of Native Americans regarding transitions from serious illness to death, and (2) awareness about hospice and palliative care service models in a Great Plains reservation-based community.

DESIGN

Qualitative descriptive study.

METHODS

Community members and clinicians were invited to participate in a semi-structured focus group or interview by Tribal Advisory Board members. Analysis involved three phases: (1) qualitative descriptive analysis of preliminary themes using the Addressing Palliative Care Disparities conceptual model; (2) a cultural review of the data; and (3) reflexive thematic analysis to synthesize findings.

RESULTS

Twenty-six participants engaged in two focus groups (n = 5-6 participants in each) and interviews (n = 15). Four themes were derived from their stories: (1) family connectedness is always priority; (2) end-of-life support is a community-wide effort; (3) everyone must grieve in their own way to heal; and (4) support needs from outside the community.

CONCLUSION

Findings highlight cultural considerations spanning the life course. Clinicians, researchers and traditional wisdom keepers and practitioners, particularly those working in rural and/or reservation-based settings, must provide culturally safe care. This must include acknowledging and prioritizing the needs and preferences of Native American patients and the impact on their families and communities.

IMPACT AND IMPLICATIONS FOR THE PROFESSION

Leveraging community assets, such as family and social networks, is key for supporting Native American patients with serious illnesses. Additionally, facilitating greater family and caregiver involvement along a patient's care trajectory may be a pathway for easing health care workers' caseloads in reservation-based areas, where resources are limited.

REPORTING METHOD

The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used.

PATIENT/PUBLIC CONTRIBUTION: The study was ideated based on community insight. Tribal Advisory Board members oversaw all aspects including recruitment, data acquisition, interpretation of findings and tribal data dissemination.