Anticipating Needs at End of Life in Narratives Related by People Living With HIV/AIDS in Appalachia

Abstract

As part of a mixed methods study determining end-of-life and advanced care planning needs in southern Appalachia, a narrative analysis was done of stories told in interviews of 8 selected participants using transcript data. Narratives were fraught with contradiction and paradox. Tensions were evident about living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The primary finding was that stigma, from several sources, and shrinking circles of social support for people living with HIV/AIDS, all of whom were in treatment, combined to create a sense of solitariness. Narratives were fraught with tensions, contradictions, and paradoxes. Living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The rejection-based religiously based stigma was often predicated on stereotypes about sexual behavior and illicit drug use. Diagnosis was a key turning point after which many spiraled downward financially and socially. Implications for research and advanced care planning are included.

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation

“…These results confirm the findings of 2 trials with African American adolescent PLWH 17,18 and survey results among adult African American members of the American Association of Retired Persons (AARP). 19 Study results are consistent with reports that prescription opioid use is lower among African Americans than white patients [28][29][30] and provide evidence that this lower use of prescription opioids may be a result of patients' preferences. Further supporting this, most AA-PLWH were willing to endure great pain and did not regard this as a fate worse than death.…”

“…Hospital-based death may also reflect limited home resources, concerns about family-caregiver burden, or concerns about HIV disclosure. 25,26,30 Results highlight the importance of not generalizing by race and the importance of individualized patient-centered care.…”

Palliative care interventions for people who use substances during communicable disease outbreaks: a scoping review

“…The included records were published between 1988 and 2021, and approximately half were from the USA (n=15, 46.9%) 16–30. The majority focused on human immunodeficiency virus (HIV) (n=27, 84.4%) and the life-threatening diagnosis of acquired immunodeficiency syndrome (AIDS) (n=27, 84.4%) 16–42.…”

“…The included records were published between 1988 and 2021, and approximately half were from the USA (n=15, 46.9%) 16–30. The majority focused on human immunodeficiency virus (HIV) (n=27, 84.4%) and the life-threatening diagnosis of acquired immunodeficiency syndrome (AIDS) (n=27, 84.4%) 16–42. We identified records about other communicable disease outbreaks, such as COVID-19 (n=6, 18.8%)33 35 42–45 and Ebola (n=2, 6.3%)42 46 and other life-limiting illnesses, such as cancer (n=8, 25.0%) 18 20 27 31 33 40–42.…”

Predictors of End of Life Discussions Among Minority Older Women Living With HIV Infection

“…26 However, perceiving HIV as punishment may interfere with EOL discussions, especially when religions stigmatize PLWH, creating fear and stigma that influence the level of comfort to disclose their HIV/AIDS status with their significant other, family members, and friends. 40 Participants in this study who were in pain reported having discussions of EOL. One possible explanation for this result is the increased desire to relieve the pain.…”