Climbing Back Up the Mountain: Reflections From an Exploration of End-of-Life Needs of Persons Living With HIV/AIDS in Appalachian Tennessee.
Little is known about the health access and end-of-life (EOL) concerns of persons living with HIV/AIDS (PLWHA) in Appalachia, where religious and cultural values are largely traditional. A qualitative, descriptive study with 9 participants was undertaken to assess EOL care needs among those from South Central Appalachian PLWHA. The focus of the study was to examine subjective data regarding EOL needs assessment related to advanced care planning. Five men and 4 women self-acknowledged a diagnosis of HIV/AIDS and completed a 2-hour face-to-face interview with the nurse researcher. Data were analyzed using qualitative descriptive content analysis methods, including data coding for emergent themes and metaphors. A common metaphor tied content to both struggle and triumph as well as the beauty and ruggedness of the Appalachian region: "Climbing Back up the Mountain." Rich descriptions of the significance of the metaphor match with stigma as the greatest hurdle to overcome in planning and interacting with others, including health care providers and significant others, about EOL care needs and advanced planning preferences. Further, the metaphor was derived directly from quotes offered by participants. Sources of stigma were often intersecting: the disease itself, associations with "promiscuity," sexual minority status, illicit drug use, and so on. Strong spiritual images were contrasted with a common avoidance and disdain of organized religion. Findings were used in refining plans for a larger study of EOL care needs and concerns on the population of PLWHA in 2 Southern Appalachian states. Comparison with other research and insights for providers is included.
College of Nursing, University of Tennessee, Knoxville, TN, USA shutson@utk.edu.
Sadie P
SP
Hutson
D000163:Acquired Immunodeficiency Syndrome / Q000523:psychology; D000328:Adult; D032722:Advance Care Planning; D001061:Appalachian Region; D054521:Cultural Competency; D005260:Female; D015658:HIV Infections / Q000208:ethnology / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010865:Pilot Projects; D000072339:Sexual and Gender Minorities / Q000523:psychology; D057545:Social Stigma; D012959:Socioeconomic Factors; D019966:Substance-Related Disorders / Q000523:psychology; D013714:Tennessee; D013727:Terminal Care / Q000523:psychology*
Appalachia; HIV/AIDS; access to services; cultural competence; end-of-life; intersectionality; stigma