Advancing Palliative Care in Northern Plains American Indians

Abstract: COVID-19 has created unparalleled challenges to the health of the most vulnerable communities in the US.Although these disparities are multifactorial, addressing inadequate access to and uptake of COVID-19 testing will be critical for optimizing COVID-19 response in these communities. The Lakota tribal communities in the Great Plains are some of the most disadvantaged communities in the US with life expectancy nearly 20 years shorter than US average and a staggering burden of acute and chronic disease. Although the US governmentis required by treaty agreements to provide health care to the Lakota tribes, inadequate funding of the Indian Health Service (IHS) on top of insufficient staffing and infrastructure, lack of cultural sensitivity, and extensive history of trauma and abuse have led to widespread distrust and dissatisfaction with the IHS. Furthermore, high levels of poverty and unemployment, lack of other forms of health insurance and long travel distancesmean that other health care options are out of reach of most tribal members. Given this reality, the effectiveimplementation of COVID-19 testing requires a tribally driven effort to understand the perspectives of tribal members on testing and the downstream implications of testing, and to ensure that testing strategies and other COVID related interventions are grounded in the cultural values, traditions and experiences of the Lakota tribes. Over the last 6 years, we have developed a multidisciplinary, tribally-driven collaboration to advancethe health of Lakota tribes that brings together organizations in South Dakota (Great Plains Tribal Chairmen'sHealth Board, Avera Health/Walking Forward, South Dakota State School of Nursing, Indian Health Service), the Cheyenne River, Pine Ridge and Rosebud Sioux tribes and Mass General/Harvard. In this application, we propose to build upon this collaboration to conduct a two phase study to: (1) understand the social, cultural andeconomic factors driving use of COVID-19 testing in these tribes; (2) determine alternative strategies for delivering testing in these communities, and (3) expand the Great Plains Lakota Health Research Collaboration(GPLHRC) to develop a sustainable platform for creating evidence to support Lakota COVID-19 response,collaborate with other efforts to improve COVID-19 testing among vulnerable populations, and contribute to theRADx-UP network. Informed by our community advisory board and conceptual frameworks, we will use an innovative methodological approach integrating semi-structured interviews and discrete choice experiments to develop robust insights into how to design key components of test delivery. We will focus on viral testing (and downstream issues of contact tracing/ quarantine), but study results will inform future implementation of vaccination and other strategies. Products will include strategies to increase acceptability and accessibility of testing in Lakota communities, an innovative and adaptable "tool-kit" for assessing the impact of future COVID-19 response strategies, a novel "community detailing" model for increasing engagement in COVID-19 response, and new knowledge about the role of key cultural, social, and economic factors in access to healthcare among Lakota tribes.