Perceptions of Advance Care Planning Needs of Persons Living With HIV in Appalachia: A Qualitative Descriptive Study
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 reso...
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| Published in: | American journal of hospice & palliative medicine Vol. 39; no. 12; pp. 1452 - 1459 |
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| Format: | Journal Article |
| Language: | English |
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Los Angeles, CA
SAGE Publications
01-12-2022
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| 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. |
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| AbstractList | 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. |
| Author | Giron, Joelle Hutson, Sadie Pauline West, Frankie L. |
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| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/35442114$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.1177/014107680109400918 10.1016/j.jana.2017.03.011 10.1089/jpm.2008.0261 10.1089/jpm.2005.8.s-22 10.1016/j.jpainsymman.2018.02.020 10.1080/09540121.2017.1308463 10.1002/1098-240x(200008)23 10.1177/1049909115600857 10.1111/j.1532–5415.2009.02494.x 10.1016/S0140-6736(13)61809-7 10.1016/j.cnur.2017.10.010 10.1080/09540120412331319750 |
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| Keywords | end-of-life human immunodeficiency virus underserved Appalachia chronic illness advance care planning |
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| References | Kirk, Goetz 2009; 57 Reif, Golin, Smith 2005; 17 Hutson 2016; 33 Deeks, Lewin, Havlir 2013; 382 Lyon, Garvie, Briggs, He, McCarter, D'Angelo 2009; 12 Hold, Blake, Byrne, Varga 2017; 28 Sandelowski 2000; 23 Goodkin, Kompella, Kendell 2018; 53 Grady, Knebel, Draper 2001; 94 Mitchell, Hansen, Tseng 2018; 56 Ferrell 2005; 8 Lyon, D’Angelo, Dallas 2017; 29 bibr19-10499091221087697 bibr3-10499091221087697 CDC (bibr5-10499091221087697) 2016 bibr12-10499091221087697 bibr16-10499091221087697 bibr6-10499091221087697 bibr21-10499091221087697 bibr9-10499091221087697 bibr7-10499091221087697 bibr4-10499091221087697 bibr1-10499091221087697 bibr11-10499091221087697 bibr8-10499091221087697 National Consensus Project (bibr18-10499091221087697) 2013 bibr20-10499091221087697 bibr17-10499091221087697 bibr10-10499091221087697 bibr2-10499091221087697 bibr13-10499091221087697 National Consensus Project (bibr14-10499091221087697) 2009 bibr15-10499091221087697 |
| References_xml | – volume: 17 start-page: 558 issue: 5 year: 2005 end-page: 565 article-title: Barriers to accessing HIV/AIDS care in North Carolina: Rural and urban differences publication-title: AIDS Care contributor: fullname: Smith – volume: 29 start-page: 1287 issue: 10 year: 2017 end-page: 1296 article-title: A randomized clinical trial of adolescents with HIV/AIDS: Pediatric advance care planning publication-title: AIDS Care contributor: fullname: Dallas – volume: 53 start-page: 123 issue: 1 year: 2018 end-page: 135 article-title: End-of-life care and bereavement issues in human immunodeficiency virus-AIDS publication-title: Nurs Clin contributor: fullname: Kendell – volume: 8 start-page: s22 issue: Supplement 1 year: 2005 end-page: s29 article-title: Overview of the domains of variables relevant to end-of-life care publication-title: J Palliat Med contributor: fullname: Ferrell – volume: 382 start-page: 1525 year: 2013 end-page: 1533 article-title: The end of AIDS: HIV infection as a chronic disease publication-title: Lancet contributor: fullname: Havlir – volume: 28 start-page: 752 issue: 5 year: 2017 end-page: 760 article-title: Opening life’s gifts: Facing death for a second time publication-title: J Assoc Nurses AIDS Care contributor: fullname: Varga – volume: 33 start-page: 972 issue: 10 year: 2016 end-page: 976 article-title: Climbing back up the mountain publication-title: Am J Hospice Palliat Med contributor: fullname: Hutson – volume: 12 start-page: 363 issue: 4 year: 2009 end-page: 372 article-title: Development, feasibility, and acceptability of the family/adolescent-centered (FACE) advance care planning intervention for adolescents with HIV publication-title: J Palliat Med contributor: fullname: D'Angelo – volume: 57 start-page: 2129 issue: 11 year: 2009 end-page: 2138 article-title: Human immunodeficiency virus in an aging population, a complication of success publication-title: J Amer Geria Soc contributor: fullname: Goetz – volume: 94 start-page: 479 issue: 9 year: 2001 end-page: 482 article-title: End-of-life issues in AIDS: The research perspective publication-title: J R Soc Med contributor: fullname: Draper – volume: 23 start-page: 334 issue: 4 year: 2000 end-page: 340 article-title: Whatever happened to qualitative description? publication-title: Res Nurs Health contributor: fullname: Sandelowski – volume: 56 start-page: 53 issue: 1 year: 2018 end-page: 62 article-title: Correlates of patterns of health values of African Americans living with HIV/AIDS: Implications for advance care planning and HIV palliative care publication-title: J Pain Symptom Manag contributor: fullname: Tseng – ident: bibr10-10499091221087697 doi: 10.1177/014107680109400918 – ident: bibr19-10499091221087697 doi: 10.1016/j.jana.2017.03.011 – ident: bibr12-10499091221087697 doi: 10.1089/jpm.2008.0261 – volume-title: Clinical practice guidelines for quality palliative care year: 2009 ident: bibr14-10499091221087697 contributor: fullname: National Consensus Project – ident: bibr15-10499091221087697 doi: 10.1089/jpm.2005.8.s-22 – ident: bibr17-10499091221087697 – ident: bibr8-10499091221087697 – ident: bibr6-10499091221087697 – ident: bibr21-10499091221087697 doi: 10.1016/j.jpainsymman.2018.02.020 – ident: bibr7-10499091221087697 – ident: bibr13-10499091221087697 doi: 10.1080/09540121.2017.1308463 – ident: bibr11-10499091221087697 doi: 10.1002/1098-240x(200008)23 – ident: bibr16-10499091221087697 doi: 10.1177/1049909115600857 – volume-title: HIV in the southern United States year: 2016 ident: bibr5-10499091221087697 contributor: fullname: CDC – volume-title: Clinical practical guidelines for quality palliative care year: 2013 ident: bibr18-10499091221087697 contributor: fullname: National Consensus Project – ident: bibr2-10499091221087697 doi: 10.1111/j.1532–5415.2009.02494.x – ident: bibr1-10499091221087697 doi: 10.1016/S0140-6736(13)61809-7 – ident: bibr3-10499091221087697 – ident: bibr20-10499091221087697 doi: 10.1016/j.cnur.2017.10.010 – ident: bibr9-10499091221087697 doi: 10.1080/09540120412331319750 – ident: bibr4-10499091221087697 |
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| Title | Perceptions of Advance Care Planning Needs of Persons Living With HIV in Appalachia: A Qualitative Descriptive Study |
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