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.