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

Abstract

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.

Keywords

advance care planning Appalachia chronic illness end-of-life human immunodeficiency virus underserved

Get full access to this article

View all access options for this article.

References

Deeks

Lewin

Havlir

. The end of AIDS: HIV infection as a chronic disease. Lancet. 2013;382:1525-1533. doi:10.1016/S0140-6736(13)61809-7.

Kirk

Goetz

. Human immunodeficiency virus in an aging population, a complication of success. J Amer Geria Soc. 2009;57(11):2129-2138. doi:10.1111/j.1532–5415.2009.02494.x.

CDC . Diagnoses of HIV infection in the United States and dependent areas 2018 . Atlanta, GA: Centers for Disease Control and Prevention. www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-2018-updated-vol-31.pdf Accessed December 1, 2020.

CDC.

Estimated HIV incidence and prevalence in the United States, 2010–2016 . Atlanta, GA: Centers for Disease Control and Prevention. Accessed Online, 2019http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html.

CDC . HIV in the southern United States. Atlanta, GA: Centers for Disease Control and Prevention. www.cdc.gov/hiv/pdf/policies/cdc-hiv-in-the-south-issue-brief.pdf (2016).

Tennessee Department of Health . Federal shortage areas . Washington, D.C.: U.S. Department of Health and Human Services, 2018. www.tn.gov/content/dam/tn/health/program-areas/rural-health/PC_2018.JPG Accessed Published.

Alabama Department of Public Health (MUA/Ps) . Medically underserved areas/populations. Montgomery, AL: Alabama Public Health, 2019. http://www.alabamapublichealth.gov/ruralhealth/assets/MUAPMap.pdf Accessed Published.

Alabama Office of Primary Care and Rural Health. Primary care health professional shortage areas. Montgomery, AL: Alabama Public Health. http://www.alabamapublichealth.gov/ruralhealth/PrimaryCareHPSAMapJAN2019.revised08219.pdf Accessed Published January 2019.

Reif

Golin

Smith

. Barriers to accessing HIV/AIDS care in North Carolina: Rural and urban differences. AIDS Care. 2005;17(5):558-565. doi:10.1080/09540120412331319750.

10.

Grady

Knebel

Draper

. End-of-life issues in AIDS: The research perspective. J R Soc Med. 2001;94(9):479-482. doi:10.1177/014107680109400918.

11.

Sandelowski

. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-340. doi:10.1002/1098-240x(200008)23.

12.

Lyon

Garvie

Briggs

McCarter

D'Angelo

. Development, feasibility, and acceptability of the family/adolescent-centered (FACE) advance care planning intervention for adolescents with HIV. J Palliat Med. 2009;12(4):363-372. doi:10.1089/jpm.2008.0261.

13.

Lyon

D’Angelo

Dallas

, et al. A randomized clinical trial of adolescents with HIV/AIDS: Pediatric advance care planning. AIDS Care. 2017;29(10):1287-1296. doi:10.1080/09540121.2017.1308463.

14.

National Consensus Project . Clinical practice guidelines for quality palliative care. 2nd ed.. Pittsburgh, PA: National Consensus Project. https://www.hopkinsmedicine.org/som/faculty/appointments/_documents/_ppc_documents/portfolios/Hutton/Hutton-Portfolio-Samples/clinical-practice-guidelines-for-quality-palliative-care.pdf (2009).

15.

Ferrell

. Overview of the domains of variables relevant to end-of-life care. J Palliat Med. 2005;8(Supplement 1):s22-s29. doi:10.1089/jpm.2005.8.s-22.

16.

Hutson

. Climbing back up the mountain. Am J Hospice Palliat Med. 2016;33(10):972-976. doi:10.1177/1049909115600857.

17.

AppalachianCommission Regional . Appalachian counties served by ARC. Washington, D.C.: Appalachian Regional Commission. https://www.arc.gov/appalachian-counties-served-by-arc/ Accessed December 1, 2021.

18.

National Consensus Project . Clinical practical guidelines for quality palliative care. 3rd ed.. Pittsburgh, PA: National Consensus Project. http://www.nationalcoalitionhpc.org/guidelines-2013/ (2013).

19.

Hold

Blake

Byrne

Varga

. Opening life’s gifts: Facing death for a second time. J Assoc Nurses AIDS Care. 2017;28(5):752-760. doi:10.1016/j.jana.2017.03.011.

20.

Goodkin

Kompella

Kendell

. End-of-life care and bereavement issues in human immunodeficiency virus-AIDS. Nurs Clin. 2018;53(1):123-135. doi:10.1016/j.cnur.2017.10.010.

21.

Mitchell

Hansen

Tseng

T-Y

, et al. Correlates of patterns of health values of African Americans living with HIV/AIDS: Implications for advance care planning and HIV palliative care. J Pain Symptom Manag. 2018;56(1):53-62. doi:10.1016/j.jpainsymman.2018.02.020.