Academic journal article The Qualitative Report

HIV in the Heartland: Experiences of Living with HIV in Urban and Rural Areas of the Midwest

Academic journal article The Qualitative Report

HIV in the Heartland: Experiences of Living with HIV in Urban and Rural Areas of the Midwest

Article excerpt

"Place is not merely a setting or backdrop, but an agentic player in the game, a force with detectable, and independent effects on social life." (Gieryn, 2000, p. 466)


In the third decade into the HIV epidemic, people living with HIV and AIDS (PLWHA) continue to report experiencing HIV-related stigma within their day to day lives. With the advent of HIV medications, such as combination antiretroviral treatments (cART) and advancements in the treatment of care to combat HIV/AIDS worldwide, and the proliferation of HIV-related education across the globe, work still remains to combat stigma, prejudices, and discrimination associated with being HIV-positive. A growing body of research suggests that stigma and discrimination related to an HIV-positive status among PLWHAs act as barriers to getting tested, taking medication, and consistency in care among PLWHAs (Holzemer et al., 2009; Stringer et al., 2016; Turan et al., 2011; Vanable et al., 2006; Vyavaharkar et al., 2010) and have negative effects on the psychological and social wellbeing of PLWHAs (Herek, Saha, & Burack, 2013).

The nature of HIV stigma, prevalence, and expression varies across social and cultural contexts (Chambers et al., 2015; Earnshaw & Kalichman, 2013; Genberg et al., 2007; Kalichman et al., 2009). In terms of contextual diversity among the United States, research reports that prejudice, stereotyping, and discrimination of PLWHAs by healthcare workers is more prevalent in the Deep South (Stringer et al., 2016); and in rural and low prevalence areas PLWHAs similarly experience higher levels of prejudice and discrimination and lesser access to healthcare and social support compared to urban areas (Castaneda, 2000; Heckman et al., 1998; Zukoski & Thornburn, 2009; Zukoski, Thorburn, & Stroud, 2011). However, much of this research has not addressed the geographical context of the Midwestern United States as these areas have low HIV prevalence and infection rates. Living with HIV in low prevalence areas, especially rural areas provides a different set of living circumstances than those in urban areas. These struggles include lack of resources such as transportation, limited access to healthcare services, and minimal social support. Not only do PLWHAs in rural areas experience lack of material resources but generally live in areas where there is less awareness and greater misinformation of HIV/AIDS. In this paper, we explore the lived experiences of PLWHAs in low prevalence areas of the Midwest in both urban and rural contexts and how these individuals manage, respond, and combat HIV-related stigma in their communities for the purpose of providing greater insight into their struggles as well as areas for potential intervention for practitioners and policy makers.

Literature Review

Conceptualization of HIV-Related Stigma

Erving Goffman (1963), one of the first social scientists to identify stigma as a social process, conceptualized stigma as a discrediting "mark" or attribute that reduces a person's status in society. Building on Goffman's ideas of stigma, scholars have developed conceptual frameworks specific to HIV-related stigma that emphasize the social processes involved in creating a stigmatized identity (Alonzo & Reynolds, 1995; Earnshaw & Chaudoir, 2009; Herek, 1999; Herek & Capitanio, 1998; Parker & Aggleton, 2003; Taylor, 2001). For example, Link and Phelan (2001) theorize that stigma emerges from a social process involving several stages, including labeling, stereotyping, separation, status loss, and discrimination. Though Link and Phelan's work does not focus specifically on HIV/AIDS, it has been used widely within HIV/AIDS literature to illustrate the social process involved in othering PLWHAs. In what follows, we use HIV/AIDS to illustrate Link and Phelan's process of becoming stigmatized. First, individuals are labeled as HIV-positive through their initial diagnosis. …

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