Perceptions of Advance Care Planning Needs of Persons Living With HIV in Appalachia: A Qualitative Descriptive Study

• Published in: American journal of hospice & palliative medicine Vol. 39; no. 12; pp. 1452 - 1459
• Main Authors: Hutson, Sadie Pauline, West, Frankie L., Giron, Joelle
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 01-12-2022
• Subjects: end-of-life; human immunodeficiency virus; underserved; Appalachia; chronic illness; advance care planning
• ISSN: 1049-9091; 1938-2715
• DOI: 10.1177/10499091221087697

Persons living with Human immunodeficiency virus (HIV) are living longer, healthier lives due to advancements in antiretroviral therapies and access to lifelong treatment. Yet, in rural Appalachia, access to adequate medical care is complicated by factors such as geography and lack of access to resources. The purpose of this study was to explore the perceptions of advance care planning (ACP) needs of persons living with HIV (PLWH) in Appalachian Tennessee and Alabama. Using a qualitative-descriptive design, we analyzed patterns of responses to face-to-face, semi-structured interviews of 40 PLWH as part of a larger multi-site mixed method study. Data demonstrated high patient satisfaction with medical care and good relationships with providers. However, common themes arose surrounding stigma, inadequate finances, and dislike of the term “end-of-life.” Findings from this study fill a gap in the extant science pertaining to the focus of ACP in the unique population of rural Appalachia.