A descriptive study of cancer care experiences and burden of rural South Dakotans

Background: American Indian (AI) persons with advanced cancer (PwAC) in South Dakota have seen increased rates of cancer incidence and mortality compared to national rates. These inequities are driven by social determinants of health. Providing early palliative care is highly important for rural PwAC but is sparsely available in rural South Dakota. Objective: To explore cancer care experiences and patient symptoms and caregiver burden among AI and rural PwAC, and their family caregivers (FCGs), to understand the barriers and opportunities for adapting an early palliative care intervention. Design: Descriptive study design reporting on the qualitative and quantitative data collected. Methods: = 11 PwAC and 8 FCGs). Results: PwAC experience moderate symptom burden with 83.3% lacking energy, 77.8% feeling drowsy, and 72.2% feeling pain. FCGs experience high caregiver burden across all three subscales of the caregiving scale. Qualitative analysis found an overarching category of "Healthcare Fragmentation Amplified by Living in a Rural/Frontier Location" with three underlying codes: "Being Seen and Heard: Value-Based Connection to Distant Resources," "Facilitating Decision Making from Afar," and "Problem Solving Skills and Solutions." Conclusion: This study demonstrates that rural cancer care is challenged by multiple factors, including fragmented healthcare, lack of healthcare infrastructure, and vast travel distances. This greatly impacts PwAC and FCG's ability to feel seen and heard, make decisions, and problem-solve. Supportive programs designed for the local rural context are imperative to improve the quality of life for rural PwAC and their FCGs.