EXPLORING END-OF-LIFE CARE: ACCESS AND PERSPECTIVES AMONG THE A’ANININ AND NAKODA NATIONS
Embargo until
2024-05-01
Date
2023-03-28
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Publisher
Johns Hopkins University
Abstract
Background: Native Americans experience higher mortality due to serious illnesses compared to 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 reservation-based, Native American communities. However, many continue to experience myriad challenges making access to services difficult; and as such, receive high-intensity interventions near end-of-life. Native Americans have been socially excluded from clinical research and education, which has rendered them an ‘invisible’ population within health care systems and contributed to disparate care provision.
Design: A sequential exploratory multi-methods study design was utilized to understand perspectives and needs regarding end-of-life care in the Fort Belknap Indian Community.
Methods: The qualitative aim included focus groups and in-depth interviews with Elders, traditional and spiritual guides, health care providers, and other key stakeholders to explore 1) cultural perspectives and attitudes surrounding the trajectory between serious illness and death; and 2) awareness about, and utilization of, existing hospice and palliative care service models. The quantitative aim included a cross-sectional survey with past and current caregivers to describe how various predictors impact barriers to care and supportive care needs.
Results: In Aim 1, 26 participants engaged in 2 focus groups (of 5 and 6 participants) and interviews (n=15). Four themes were derived from their stories: 1) family connectedness is always the priority; 2) end-of-life support is a true community-wide effort; 3) everyone must grieve in their own way to heal; and 4) support needs from outside the community. Survey participants (Aim 2) were mostly female (72.4%), between the ages of 30 to 49 years (44.9%), and new to caregiving in the last six months (32.5%). Regression analyses (N=127) demonstrated higher depression, anxiety, stress, and caregiver burden were significant related to increased supportive care needs and barriers to care.
Conclusion: This study reveals important perspectives and considerations regarding end-of-life care in the Fort Belknap community. Future scientific inquiry should prioritize further understanding of caregivers’ mental health, wellbeing, and self-efficacy to enable targeted actions for meeting care needs of reservation-based, Native American patients and families.
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Keywords
Palliative care, health care access, Native American