Exploring End-of-Life Care: Access and Perspectives among the A'aniniiin and Nakoda Tribes

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PROJECT SUMMARY Title: Exploring End-of-Life Care: Access and Perspectives among the A'aninin and Nakoda Tribes. Native Americans experience higher mortality due to serious illnesses like cancer, heart disease, and liver disease than all other racial and ethnic groups in the United States. There is growing recognition of the need for culturally appropriate and acceptable end-of-life care for Native communities. Despite expansion of traditional hospice and palliative care programs nationally, the 5.2 million Natives in the U.S. are enduring geographic displacement, poverty, and fallout from colonization, which poses significant challenges for accessing services. Many Native Americans receive high-intensity end-of-life care, and can be hesitant to decline or withdraw interventions due to historical mistrust of the medical establishment. Due to perpetual social exclusion, Native Americans have been sorely underrepresented in palliative care and end-of-life care research, rendering them an `invisible' population to many people. Using a sequential exploratory mixed methods approach, this study aims to explore end-of-life care access and perspectives among the A'aninin and Nakoda Nations from the Fort Belknap Indian Community. This will be accomplished through the following specific aims: Aim 1: Explore: a) perspectives on death, dying, and bereavement, and b) awareness and attitudes about hospice and palliative care service models among Aaniiih and Nakoda tribe members from the Fort Belknap Reservation using qualitative focus groups and individual interviews. Aim 2: Describe how cultural identity, communal mastery, spirituality, and caregiver burden impact barriers to care and supportive care needs for patients and families enduring serious illness, among Aaniiih and Nakoda family caregivers of the Fort Belknap Reservation using a cross-sectional survey. Aim 3: Informed by an Addressing Palliative Care Disparities framework, and in collaboration with the Tribal Advisory Board, interpret and integrate findings to develop guiding principles to address unmet needs for members of the A'aninin and Nakoda Nations of the Fort Belknap Reservation. This study will generate foundational evidence to inform the future development of targeted interventions addressing the unique end-of-life care needs for Native American communities, a high-risk population, disproportionately impacted by health inequities, death, and disability in the United States.