Perceptions of Palliative Care: Voices From Rural South Dakota.

Abstract

This study aimed to explore health professional, patient, family, and caregiver perceptions of palliative care, availability of palliative care services to patients across South Dakota, and consistency and quality of palliative care delivery. Six focus groups were conducted over two months. Participants included interprofessional healthcare team members, patients, family members of patients, and caregivers. Individuals with palliative care experiences or interest in palliative care were invited to participate. Recruitment strategies included emails, flyers, and direct contact by members of the Network. Snowball sampling was used to recruit participants. Forty-six participants included patients, family members, caregivers and interprofessional health care team members. Most participants were Caucasian (93.3%) and female (80%). Six primary themes emerged: Need for guidance toward the development of a holistic statewide palliative care model; Poor conceptual understanding and awareness; Insufficient resources to implement complete care in all South Dakota communities; Disparities in the availability and provision of care services in rural SD communities; Need for relationship and connection with palliative care team; and Secondary effects of palliative care on patients/family/caregivers and interprofessional healthcare team members. Significance of Results: Disproportionate access is a principle problem identified for palliative care in rural South Dakota. Palliative care is poorly understood by providers and recipients of care. Service reach is also tempered by lack of resources and payer reimbursement constraints. A model for palliative care in these rural communities requires concerted attention to their unique needs and design of services suited for the rural residents.