Over the past 30 years, HIV/AIDS has evolved from a death sentence to a chronic condition managed by effective diagnostics and therapies. Despite this, HIV/AIDS remains a leading cause of death in adults. Understanding the gap between end-of-life (EOL) needs and services for people living with HIV/AIDS (PLWHA) is complex and dynamic. EOL planning and care is especially critical in high prevalence areas of the United States, such as Southern Appalachia. Yet, very little is known about EOL needs or the availability of EOL services of Appalachian PLWHA. The purposes of this study are (1) to explore EOL care needs from the perspectives of PLWHA in Appalachian Tennessee (TN) and Alabama (AL);(2) to adapt, validate, and pilot a culturally congruent quantitative needs assessment;and (3) to compare identified needs with geographically- pinpointed community resources intended to meet these EOL needs using innovative geographic information systems (GIS). We propose an innovative fixed, sequential, mixed methods qualitative-quantitative (qual->quan) design that will be conducted in two phases. Our rationale for using mixed methods is to use themes from qualitative descriptive semi-structured interviews of PLWHA (Phase Ia) to inform adaptation of a needs assessment instrument (the Lyon Advanced Care Planning Survey (ACPS)) for EOL care and services (Phase Ib). We will pilot the adapted ACPS in Phase II using an exploratory, descriptive design wherein its results will be integrated with an analysis of the GIS mapping of existing services. The Andersen Behavioral Model of Health Services Use guides the study theoretically. We will recruit 340 adult participants over both phases. In Phase I, we will recruit 40 individuals from Appalachian TN (n=20) and AL (n=20) to participate in the semi-structured interviews. In Phase II, we will recruit 300 individuals from Appalachian TN (n=150) and AL (n=150) to complete the adapted ACPS.
Specific aims :
Aim I : Assess the EOL care and service needs of PLWHA in Appalachian TN and AL in the context of physical, psychological, social, spiritual/religious, cultural, and ethical/legal domains.
Aim II : Examine geographic access to EOL services for PLWHA in Appalachian TN and AL. The results of this study will significantly improve our understanding of EOL care needs and services for those PLWHA in Appalachian areas of TN and AL and will set the stage for developing and testing interventions aimed at increasing provider awareness of the particular needs of this population as well as accessibility and utilization of services.

Public Health Relevance

Over the past thirty years, HIV/AIDS has evolved into a chronic condition managed by effective pharmaceutical therapies;it continues to pose a significant public health burden. This study is the first to investigate the end-of-life care and service needs of individuals living in Appalachian Tennessee and Alabama, where HIV/AIDS mortality rates exceed that of the national average. Improving our understanding on the rural Appalachian population of people living with HIV/AIDS will be useful in the education of healthcare providers on needs and appropriate approaches to offering end-of-life care to these individuals and their significant others;programs assisting people with end-of-life care will be provided with significant service-related knowledge possibly applicable to the general US HIV/AIDS-affected aggregate.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZNR1-REV-T (12))
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Hardy, Lynda R
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University of Tennessee Knoxville
Schools of Nursing
United States
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Hutson, Sadie P; Darlington, Caroline K; Hall, Joanne M et al. (2018) Stigma and Spiritual Well-being among People Living with HIV/AIDS in Southern Appalachia. Issues Ment Health Nurs 39:482-489