Advances in the treatment of HIV in the United States have led to improvements in the quality of life (QOL) of people living with HIV (PLWH; Günthard et al., 2016; Nachega, Rosenkranz, & Pham, 2011). QOL has often been predicated on the ability of PLWH to seek and obtain access to timely HIV care. Despite advances in HIV-treatment outcomes, an estimated one in seven PLWH may be unaware of their HIV status (Centers for Disease Control and Prevention, 2016). In addition, only approximately 48% of those diagnosed with HIV achieved viral suppression and were retained in regular HIV care (Bulsara, Wainberg, & Newton-John, 2018; Crepaz, 2018).
According to the Centers for Disease Control and Prevention (2016), although the U.S. southern states constitute one-third of the total U.S. population, they account for an estimated 44% of all PLWH in the United States (Centers for Disease Control and Prevention, 2016). In addition, the Centers for Disease Control and Prevention (2016) found that 8 of the 10 states with the highest rates of new HIV diagnoses were in the south. Furthermore, new diagnoses of advanced HIV status have occurred more frequently in the south (Centers for Disease Control and Prevention, 2016). The southern states have been studied widely and are known for their poor health outcomes (Chakraborty et al., 2015; Rosenberg, Grey, Sanchez, & Sullivan, 2016; Sheehan et al., 2017). Improvements in health-enhancing behaviors (i.e., adherence, continuous engagement in care) across the HIV care continuum are critical to attaining optimal health outcomes in PLWH (Nijhawan et al., 2017; Yehia et al., 2015; Zinski et al., 2015).
Stigma has been defined in the context of a power differential and a co-occurring association with labeling, stereotyping, separation, loss of status, and discrimination, all of which have contributed to HIV rates and trends (Phelan, Lucas, Ridgeway, & Taylor, 2014). HIV-related stigma and discrimination has been a threat to public health since the beginning of the HIV epidemic (Herek, 1999) and continues to be a U.S. public health concern (Hatzenbuehler, Phelan, & Link, 2013; Phelan et al., 2014).
Social (i.e., interpersonal relationships) and cultural (i.e., religion/spirituality) factors that coexist in PLWH make it challenging to combat the negative HIV-treatment outcomes (Chambers et al., 2015; Iroh, Mayo, & Nijhawan, 2015; Yehia et al., 2015). Likewise, environmental factors, such as living in a rural area, can result in greater stigma toward PLWH and may lead to social rejection (e.g., shame, isolation) and discrimination (Zukoski & Thorburn, 2009). PLWH experience stigma not only in interpersonal relationships but also from health care providers, which may create barriers to testing and medication adherence (Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013; Kontomanolis, Michalopoulos, Gkasdaris, & Fasoulakis, 2017; Stringer et al., 2016; Valdiserri, 2002).
Additionally, HIV-related stigma has been associated with psychological stress, which has led to poor medication adherence and difficulty in disclosing HIV status (Grov, Golub, Parsons, Brennan, & Karpiak, 2010; Hatzenbuehler et al., 2013). Research supports a strong association between HIV-related stigma and negative HIV-treatment outcomes. However, the multidimensional aspects of stigma remain an understudied area of research (Chambers et al., 2015).
HIV-Related Stigma in the South
The historical presence of prejudice and discrimination directed toward PLWH and the psychosocial effects of stigma and variations in cultural norms have been identified as potential contributors to the high HIV rates in the south (Valdiserri, 2002). Researchers have suggested that HIV-related stigma has been prominent in the south (Stringer et al., 2016) and can manifest as internalized, anticipated, and/or enacted stigma (Earnshaw et al., 2013; Fatoki, 2016).
The manifestations of HIV-related stigma may present differently depending on geographic location, communities, religious groups, and individuals. Although it has been well documented that HIV-related stigma is deeply rooted in culture (i.e., religion/spirituality), few studies have examined these issues in the U.S. South, where HIV-related stigma is persistent. Thus, the primary aims of our study were to (a) report the findings of a results-based, convergent synthesis intended to examine how HIV-related stigma manifests and presents itself in PLWH in the U.S. South and (b) explore the intersections between HIV-related stigma and social–ecological factors in PLWH in the U.S. South.
The social–ecological model provided a framework that helped identify the influencing factors of HIV-related stigma at various levels. According to the social–ecological model, behaviors are influenced by multiple variants across various ecological levels to include intrapersonal, interpersonal, organizational, community, and public policy (Sallis et al., 2006). Improving our understanding of HIV-related stigma in the south can help health professionals provide quality care to PLWH in this region. The social–ecological model was used to provide an opportunity to identify coping strategies for HIV-related stigma, while potentially informing health care practices and policies that can reduce HIV-related stigma and promote positive health behavior changes.
We combined quantitative and qualitative studies in a systematic mixed studies review. Similar to the typical stages of a systematic review, systematic mixed studies review includes evidence from quantitative and qualitative studies using a mixed synthesis approach (Hong, Pluye, Bujold, & Wassef, 2017). Our research synthesis incorporated a results-based convergent synthesis design, as discussed by Sandelowski, Voils, and Barroso (2006).
Our interprofessional study team included four postdoctoral fellows with backgrounds in sociology, social work, public health, and behavioral health studies and two senior faculty with several years of experience in the development, delivery, and evaluation of culturally appropriate best practices in the area of HIV. Using the Institute of Medicine Committee on Standards for Systematic Reviews (Eden, Levit, Berg, & Morton, 2011) and Cochrane recommendations for systematic reviews, we followed five critical steps: (a) development of study protocol and creation of charge questions, (b) pilot testing, (c) formal screening, (d) critical appraisal, and (e) summarization of findings. The study protocol was developed and peer-reviewed in coordination with the research team, and any disagreements were resolved before pilot testing and screening.
The systematic review was conducted using three search databases because we sought to ensure interprofessional coverage of research related to this topic. The search databases included PsycINFO, PubMed (includes MEDLINE), and CINAHL, and only included English-language databases. The research team consulted an institutional librarian in the development of search terms. The librarian assisted with screening and peer review of the search strategy. Using a combination of MeSH terms and Boolean search strategy, the terms included stigma, HIV, and United States Southern Region.
The lead researcher, in coordination with the librarian, pilot tested the selection criteria on a sample set of full-text articles. The selection process was piloted by applying inclusion criteria to a sample of articles to determine if they could be reliably interpreted and classified appropriately. Additionally, the pilot phase was used to refine and clarify inclusion criteria and to ensure that the criteria could be applied consistently across research team members.
Articles were screened to meet the following inclusion criteria. The article (a) consisted of original peer-reviewed quantitative or qualitative research, (b) assessed HIV-related stigma in the context of PLWH, (c) assessed HIV-related stigma within the context of the southern region of the United States, and (d) was published in 2008 and later. The decision to choose articles published in 2008 and later was influenced by the development of multidimensional measures of stigma within the past 10 years. Additionally, the study sought to draw from more recent HIV literature. Articles that did not qualify for any of the above criteria were excluded.
We used Mendeley and Covidence databases to streamline the article screening process. Articles were uploaded to Mendeley directly from each searched database. Articles uploaded to Mendeley were then imported into the Covidence database for screening, quality appraisals, and extraction. Using the Covidence database, two researchers participated in the article screening process. Specifically, articles were screened first by title and abstract, then by full text. After excluding articles that were considered not suitable for the review focus, the research team extracted 30 articles (15 quantitative and 15 qualitative). Data extraction was conducted by the first author and verified by the second author. The Covidence database was used to record study details and aided in the data extraction process. Data extraction included the study characteristics of geographic location, population, and research design/methods. Disagreements between reviewers were resolved by consensus and, if that failed, a third independent reviewer resolved the disagreement.
To address the risk of bias, articles were appraised using a combination of the Critical Appraisal Skills Programme (CASP) checklist and Joanna Briggs Institute checklist. Separate CASP checklists were used for each study design. The CASP checklist included 10 questions and the Joanna Briggs Institute checklist had eight questions, while both incorporated a critical assessment of potential bias, ethical issues, and an assessment of methodological quality, all of which were key components of appraisals of systematic reviews (McNamara & Scales, 2011). Critical appraisals were scored as ++ (all or most of the criteria were fulfilled), + (some of the criteria were fulfilled), or – (few or no criteria were fulfilled). Studies that fulfilled all (++) or some (+) of the criteria were included in the study.
Research Synthesis Process
We incorporated a results-based convergent synthesis design, where qualitative and quantitative evidence were analyzed separately using different synthesis methods, and results of both syntheses were integrated during a final synthesis (Figure 1). The segregated research synthesis design included a three-step process and maintained a conventional binary distinction between quantitative and qualitative data (Sandelowski et al., 2006).
First, we constructed a tabular summary of all studies extracted during the screening process. The table was used to compile study authorship, article date, study appraisal, research design, and other essential study characteristics Table 1. This synthesis included a range of study designs. We synthesized key study features to highlight variations across studies. Second, we synthesized the qualitative findings. The qualitative synthesis encompassed a thematic summary guided by the qualitative meta-summary technique developed by Sandelowski, Barroso, and Voils (2007). A qualitative meta-summary was used to aggregate study results and thematically organize data across studies (Sandelowski et al., 2007). Thematic analysis included extracting concepts from each study and then formulating new interpretations through the integration of concepts across studies (Harden, 2010). As data were extracted, excerpts and quotes were examined. The quotes were grouped using a data codebook developed for the purposes of the meta-summary. The codebook was established using key themes from the original study and was guided by the social–ecological framework for HIV-related stigma in the integration of findings into the overarching themes.
The third and final step combined the synthesis of qualitative findings produced from the meta-summary and the quantitative synthesis to configure a mixed research synthesis. The mixed research synthesis sought to identify convergent validation (triangulation) within qualitative and quantitative studies through a data confirmation and refutation analysis. Confirmation occurred when similar findings were consistent across qualitative and quantitative studies, and refutation occurred when these findings were inconsistent (Sandelowski et al., 2007). Synthesis data were converged to identify health-related outcomes resulting from HIV-related stigma and implications for health care practice.
The database search yielded 3,213 references, of which 1,384 were duplicates. A total of 1,829 references were screened for relevance. From the articles that were screened, 1,660 references were found to be irrelevant or not meeting study inclusion criteria. A full-text screening of 169 studies was completed. Thirty studies met inclusion criteria and included qualitative or quantitative data extraction. Figure 2 was used to document the inclusion process following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (Moher, Liberati, Tetzlaff, & Altman, 2009). The majority of the studies (86.7%, n = 26) met criteria for very low risk for bias (++ all or most of appraisal criteria were fulfilled), and 13.3% (n = 4) had a low risk for bias (+some of the appraisal criteria were fulfilled).
Fifteen quantitative studies were included in the synthesis (Barroso et al., 2014; Blake Helms et al., 2017; Chaudoir et al., 2012; Costelloe et al., 2015; De La Cruz, Davies, & Stewart, 2011; DiIorio et al., 2009; Hernandez et al., 2018; Kalichman, Katner, Banas, & Kalichman, 2017; McCoy, Higgins, Zuniga, & Holstad, 2015; Overstreet, Earnshaw, Kalichman, & Quinn, 2013; Pichon, Rossi, Ogg, Krull, & Griffin, 2015; Relf & Rollins, 2015; Vyavaharkar et al., 2010; Vyavaharkar, Moneyham, Murdaugh, & Tavakoli, 2012; White et al., 2012). All of the studies were conducted in the southeastern region of the United States with publication dates ranging from 2009 to 2017. The majority of studies were cross sectional (n = 13) and focused on internalized and perceived stigma. The HIV Stigma Scale was the most often used scale to measure stigma (n = 6). The following themes/categories were synthesized from quantitative literature: (a) stigma and medication adherence, (b) stigma and psychosocial outcomes, and (c) stigma and QOL.
Stigma and medication adherence
Experiences of internal stigma or felt stigma, including shame and expectations of discrimination (Gray, 2002), often resulted in poor medication adherence (Blake Helms et al., 2017; DiIorio et al., 2009; McCoy et al., 2015). McCoy et al. (2015) examined age and personal stigma and found that women younger than 50 years were more likely to have higher viral loads resulting from negative impacts of personal stigma. Although age could have a moderating effect on the relationship between stigma, medication adherence, and clinical health outcomes, those results were not clearly established due to nonsignificant findings (McCoy et al., 2015). In a cross-sectional study of 180 participants that included 112 African Americans (62%) and 115 males (64%), researchers found that internalized stigma was significantly associated with poor medication adherence (Blake Helms et al., 2017). Likewise, a secondary analysis of baseline data from a larger, randomized, controlled trial suggested that higher levels of perceived stigma negatively impacted medication adherence by deflating self-confidence in taking medication (DiIorio et al., 2009). Researchers indicated that self-efficacy and self-esteem served as moderators to experiences of stigma (Barroso et al., 2014; DiIorio et al., 2009)
Stigma and psychosocial outcomes
Psychosocial responses to internal stigma included nondisclosure (Overstreet et al., 2013), negative coping responses, and depression (Chaudoir et al., 2012). Chaudoir et al. (2012) explored the effects of internal stigma, spiritual peace, and proactive coping on depressive symptoms. The findings suggested a positive relationship between HIV-related stigma and depressive symptoms. The researchers also noted that individuals with spiritual peace and positive coping responses were less likely to have depressive symptoms at high levels of internal stigma as compared to those with low spiritual peace (Chaudoir et al., 2012).
Similarly, Hernandez et al. (2018) found that enacted HIV-related stigma indirectly influenced the effects of alcohol use. Researchers asserted that enacted HIV-related stigma predicted greater depressive symptoms and an increase in alcohol use. Moreover, enacted HIV-related stigma experiences were associated with higher levels of depression and mediated by alcohol use (Hernandez et al., 2018). Also, internal stigma was found to predict nondisclosure of HIV status to sexual partners and family members in African American men who had sex with men (Overstreet et al., 2013).
Additional psychosocial responses to HIV-related stigma included desires for parenthood (De La Cruz et al., 2011), social support, and interpersonal relationships (Pichon et al., 2015; White et al., 2012). However, for PLWH attachment-related anxiety and fear of abandonment by relationship partners may hinder the ability to establish strong supportive interpersonal relationships (Blake Helms et al., 2017). One study indicated that frequent participation in private religious practices were the most significant predictors of desire for parenthood in a mostly African American female sample with roughly 20% of the participants experiencing HIV-disclosure–related stigma (De La Cruz et al., 2011). Researchers indicated that 60% of the African American female participants self-identified as Baptist. Hence, the results of this study may reflect religion-based values often associated with southern culture in the United States (De La Cruz et al., 2011).
White et al. (2012) found that social support partially mediated the relationship between HIV-related symptom severity and depressive symptoms. In addition, social support, HIV-related stigma, and social problem skills were found to be significant predictors of HIV-related symptom severity and depressive symptoms in a predominantly African American male participant sample (White et al., 2012). Individuals with adequate social support, lower levels of HIV-related stigma, and effective problem-solving skills were more likely to appraise themselves as being able to manage their HIV symptoms, thus enhancing coping ability. Additionally, the longer participants experienced stigma, the more likely they were able to cope with it and integrate it as a part of their lives (White et al., 2012). Vyavaharkar et al. (2010) had similar findings in a sample of African American women in a rural southeastern region, suggesting that social support was negatively correlated with depression, and internalized stigma was significantly and positively associated with depression.
Social and environmental factors have been linked to internalized HIV stigma. In a study of African American men (68%) and women (32%), population density was associated with internalized HIV stigma (Kalichman et al., 2017). Individuals living in small urban and rural communities experienced internalized HIV stigma more than those living in large urban communities. In other words, internalized HIV stigma was associated with the size of the community. The researchers observed a pattern of relocation after testing HIV positive; individuals who lived in the city who tested HIV positive moved out of the city and those who lived outside the city moved into the city upon testing positive (Kalichman et al., 2017). These observations suggest that the testing patterns observed may be directly related to internal HIV stigma. The explanation for this phenomenon may be that people with low internal stigma move to the city for more supportive services and those with high internal stigma move out of the city environment to conceal their HIV status.
Stigma and quality of life
Vyavaharkar et al. (2012) examined physical, psychological, and social factors that impacted the QOL in rural women living with HIV. The study population was mostly African American women (85%). The findings indicated that HIV symptoms (frequency and extent to which they were bothersome), perceived stigma, internalized stigma, and depression were negatively associated with QOL. The findings also suggested that race and HIV-perceived stigma predicted poor QOL in women living with HIV. Race was found to be a significant predictor of QOL because African American women made up the majority of the sample. To support this inference, researchers concluded that future studies should include a racially heterogeneous sample (Vyavaharkar et al., 2012).
Relf and Rollins (2015) examined the multiple dimensions of stigma and its impact on QOL outcomes in a racially diverse sample with 90% of participants self-identifying as non-White and 78% men. The researchers investigated four dimensions of HIV-related stigma to include personalized stigma, disclosure stigma, negative self-image stigma, and negative public attitudes stigma. In this study, researchers found that PLWH with higher total HIV-related stigma and public attitudes stigma scores reported lower physical QOL. The investigation also revealed that a higher overall HIV-related stigma (personalized stigma, disclosure stigma, negative self-image stigma, negative public attitudes stigma) led to poorer mental QOL (Relf & Rollins, 2015).
Fifteen qualitative studies were included in the synthesis (Berg & Ross, 2014; Blake, Taylor, & Sowell, 2017; Brinkley-Rubinstein, 2015; Brinkley-Rubinstein & Turner, 2013; Caiola, Barroso, & Docherty, 2017; Dang, Giordano, & Kim, 2012; Dennis et al., 2015; Derlega, Winstead, Gamble, Kelkar, & Khuanghlawn, 2010; Fletcher et al., 2016; Gaskins et al., 2011; Grodensky et al., 2015; Kempf et al., 2010; Konkle-Parker, Erlen, & Dubbert, 2008; McSwiggin, 2017; Relf, Williams, & Barroso, 2015). These studies were published from 2008 to 2017, with a majority of the studies (n = 10) having been conducted in the southeastern region of the United States. The study population included African American (n = 6), Hispanic/Latino (n = 1), and Haitian (n = 1) participants. The majority of studies included racially diverse participants but were age specific, with most studies (n = 12) including participants' ages 18 years and older and others (n = 2) ages 50 years and older, with no studies concentrating on individuals younger than 18 years. The most frequent method of data analysis was content analysis, followed by ethnographic and comparative analyses. Table 2 provides detailed characteristics of the studies. The following themes/categories were synthesized from the qualitative literature: (a) interpersonal experience of HIV-related stigma, and (b) intersecting multilevel experiences of stigma.
A thematic analysis of the studies captured two descriptive themes. The first was the interpersonal experience of HIV stigma, with subthemes of social isolation, experience of shame, and experience of fear. The second theme was intersecting multilevel experiences of stigma, with subthemes of incarceration and stigma, intersecting environment, race, and gender.
Interpersonal Experiences of HIV-Related Stigma
The majority of the studies (n = 10) highlighted the experiences of stigma at the interpersonal level (Berg & Ross, 2014; Blake et al., 2017; Brinkley-Rubinstein, 2015; Dang et al., 2012; Dennis et al., 2015; Fletcher et al., 2016; Gaskins et al., 2011; Konkle-Parker et al., 2008; McSwiggin, 2017; Relf et al., 2015). Many study participants expressed feelings of isolation, rejection, and fear because of HIV-related stigma.
As noted in the study by Grodensky et al. (2015), older women's experiences of stigma often led to social isolation and limited social interaction, which was intended to prevent others from discovering their HIV status. Although the women felt isolated, attending church and expressing spirituality were indicated as a source of strength and resiliency: “I am not sure I would have made it through the initial shock and acclimation to it all without my faith” (Grodensky et al., 2015, p. 10). However, relationships within the church were linked to stigmatizing experiences. For example, one woman stated,
In my generation a lot of Biblical things they do not condone premarital sex. So, if you are participating in that and you get HIV, then it's sort of well, if you had not been sinning, then you would not have it. (Grodensky et al., 2015, p. 10, p. 10)
Experiences of shame
Shame was a common theme throughout the studies. Shame can function at the individual, interpersonal, and societal levels. At the interpersonal level, shame is described as a risk to a social bond and a signal of disapproval of one's actions or self (Taylor, 2015). In addition, interpersonal shame can lead to rejection and is often evoked by a “loss of status, as in losing one's standing in a social group or one's job or letting one's family or team down” (Taylor, 2015, p. 3). The studies' results indicated that interpersonal shame and experiences of HIV-related stigma concerning social and personal relationships often prevented HIV disclosure and created barriers to HIV care and medication adherence in the study populations. One study of undocumented Hispanic/Latino participants found that a common reaction to HIV-related stigma at the interpersonal level was nondisclosure (Dang et al., 2012). A 40-year-old Hispanic woman reported being removed from her family circle after disclosing her status: “All my sisters and brothers had a family meeting and decided that I had to be removed from the family circle …” (Dang et al., 2012, p. 128). Researchers found that shame was a barrier to medication adherence: “My company made it hard. You know, because I felt like I had to hide to take my medicine, you know? All, you know, for shame” (Konkle-Parker et al., 2008, p. 5) and “Picking up medicine. The embarrassment [made it harder to take my medicines]. Being ashamed to go and get my meds” (Konkle-Parker et al., 2008, p. 5).
Experiences of fear
HIV-related stigma and the fear of disclosure was also noted as impeding adherence to a medication regimen and deterring subjects from keeping appointments (Konkle-Parker et al., 2008). The fear of rejection often kept PLWH from disclosing their status, “Just fear of rejection … fear of being shunned” (Gaskins et al., 2011, p. 370). Kempf et al. (2010) found that women living with HIV in a rural southeastern region identified HIV-related stigma and fear of disclosing to their children as a barrier to making clinical appointments. Women in this study expressed concern about disclosing their HIV status to their children and not having childcare to keep appointments:
… I used to bring mine with me, but then I forgot they could … read (chuckling) … I never thought about that, the 7-year-old, she, and a lot of people was in the clinic that day, and she said, “Momma, do you have AIDS?” And she read the sign up there … I don't know what I told that gul' so quick because everybody in the clinic was looking … I didn't know how they felt or, what gonna happen, you know, this 7-year-old hollering out, “Momma you got AIDS” … my sister said, you better keep that girl from going to the clinic … so I told her you know, 'til she got older … all this stuff I could go back and laugh about it now. . . But at the time ... It wasn't funny …. (Kempf et al., 2010, p. 518).
Intersecting Multilevel Experiences of Stigma
Nine studies (Berg & Ross, 2014; Blake et al., 2017; Brinkley-Rubinstein, 2015; Brinkley-Rubinstein & Turner, 2013; Caiola et al., 2017; Dennis et al., 2015; Derlega et al., 2010; Fletcher et al., 2016; McSwiggin, 2017) addressed intersecting multilevel experiences of stigma. The majority of these articles were published from 2013 to 2017 (n = 8), with one study published in 2010. The evolution of intersectionality and its early roots dated back to the 1980s and early 1990s and emerged from both scholarly activity and activism (Caiola, Docherty, Relf, & Barroso, 2014). Early theorists emphasized that intersectionality was not merely the multiplication or addition of identity categories (Caiola et al., 2014). The intersection of race, class, gender, and other factors positioned individuals within a structure of power, in which they experienced privilege, oppression, or both simultaneously (Caiola et al., 2014). Although concepts of intersectionality were developed more than 2 decades ago, HIV-related stigma has recently expanded beyond one-dimensional levels of stigma as researchers acknowledge overlapping manifestations of stigma (Cook, Purdie-Vaughns, Meyer, & Busch, 2014). Qualitative findings highlighted the recent emergence of HIV stigma research that focused on intersectionality.
Incarceration and HIV-related stigma
Four studies (Brinkley-Rubinstein, 2015; Brinkley-Rubinstein & Turner, 2013; Dennis et al., 2015; Derlega et al., 2010) explored intersectional stigma in incarcerated or formerly incarcerated PLWH. Brinkley-Rubinstein (2015) assessed HIV-related stigma, incarceration stigma, and self-stigma related to HIV and incarceration in African American men living with HIV and found that African American men with a history of incarceration experienced extreme levels of both HIV- and incarceration-related stigma. Brinkley-Rubinstein (2015) asserted that the combination of HIV- and incarceration-related stigma could develop into self-stigma, which could negatively affect self-esteem and mental well-being. Brinkley-Rubinstein and Turner (2013), Dennis et al. (2015), and Derlega et al. (2010) explored individual-, structural-, and community-level stigma-related factors. The researchers found that HIV and incarceration stigma often resulted in fear and discrimination. A participant described fear and structural discrimination:
I'm a G-grade felon, I can't never get food again; can't never get food stamps. And they be trying to figure out what keeps people going back to prison. If you can't never get food stamps, and ain't too many gonna’ hire you if you commit a felony. … And you might just be dealing with a misdemeanor but it doesn't matter; they don't want you around, “cause they scared of you. (Dennis et al., 2015, p. 12).
Similarly, another participant described the inmates’ association of HIV with death: “People are actually scared of people with HIV. Because it's gonna kill them, and people dying like flies” (Derlega et al., 2010, p. 261). Finally, a participant stated that living on the streets was better than living in a neighborhood with the experience of stigma:
I just smoke crack and not take the medicine. Cause on the streets you can live like you want to live. I mean, to be honest with you, don't nobody care what you got, they don't care what the disease you got, they don't care about nothing. It's all about the crack. So, and in some kind of sick way it's, you can feel normal. (Brinkley-Rubinstein, 2015, p. 173).
Intersecting environment, race, and gender
Some researchers examined intersectional stigma in African American PLWH (Blake et al., 2017; Caiola et al., 2017; Fletcher et al., 2016). Studies have suggested that geographic location, including the rural south, and the intersections of race, gender, and class interact at multiple levels (individual, interpersonal, community, and institutional). Describing the intersections of race, gender, and HIV-related stigma, an African American woman stated,
I don't know, it's like a lot of people.… for a Black woman, to me, they find out you've HIV or AIDS, you've got to be, you've got to have been a prostitute. Or you had to sell your body or you're considered a little bit like nasty … That's why you know like I said, my last interview before that was like … you just can't let everybody know, it's not that I'm ashamed of this but there's a lot of cruelty out there you know? (Caiola et al., 2017, p. 214).
An African American man talked about stigma in rural communities, including facing multiple stigmas because of HIV status and drug abuse: “It is almost easier to tell people you have HIV, uh, than the drug use” (Blake et al., 2017, p. 224). Similarly, several men discussed the effects of stigma because of being gay: “If they find out you are HIV, then you must be gay, um, got it from gay sex” (Blake et al., 2017, p. 224).
Qualitative and quantitative findings from 30 studies were integrated to assess the implications of HIV-related stigma on health care outcomes, and the resultant findings were used to identify HIV stigma-related factors across social–ecological levels and the association with psychological wellness and recommendations to improve the treatment and care of PLWH.
The quantitative synthesis indicated that experiences of stigma often resulted in poor medication adherence by deflating self-efficacy in taking medication. In addition, the synthesis revealed that self-efficacy and self-esteem served as moderators of the experience of stigma. Furthermore, the qualitative synthesis pointed to shame as an indicator of poor medication adherence as observed in the following quote: “Being ashamed to go and get my meds” (Konkle-Parker et al., 2008, p. 5). Culturally informed interventions that are specifically tailored toward improving self-efficacy, self-esteem, and other intrapersonal factors are critical to addressing medication adherence in PLWH.
Moreover, shame and other emotional responses to HIV-related stigma must be addressed. Enhancing self-compassion may be a viable approach to reducing shame and stigma in PLWH. Research has suggested that self-compassion or “an orientation toward one's problems that involves treating oneself with the same care and concern with which one treats loved ones” (Brion, Leary, & Drabkin, 2014, p.1) improved adaptive behaviors, such as disclosure, help-seeking behaviors, and medication adherence by PLWH. Self-compassion was also associated with less negative emotions to include lower emotional stress, self-pity, and shame (Brion et al., 2014). Brion et al. (2014) concluded that psychoeducation interventions that educated patients on how to approach illness with self-compassion would likely improve adaptive behavioral outcomes in PLWH. A combination of acceptance and compassion-based group therapy was also found to reduce experimental avoidance, self-stigma, and psychological distress in gay men living with HIV (Skinta, Lezama, Wells, & Dilley, 2015). The results of our synthesis suggest that there are likely to be significant differences in the experiences of shame in different individuals and different populations; thus, shame should be further examined across cultures and sociopolitical contexts (Hutchinson & Dhairyawan, 2018).
Social relationships, including family members, partners, and peers, were found to both increase and mitigate the impact of HIV-related stigma. The quantitative synthesis indicated that social support mediated the relationship between HIV-related symptom severity and depressive symptoms. In addition, social support was found to help PLWH manage HIV symptoms while at the same time promoting coping ability. HIV stigma regarding social and personal relationships also served as a barrier to HIV care and medication adherence. Our qualitative exploration cited the fear of isolation and rejection as leading factors in nondisclosure, as some PLWH had been excluded from their families because of their HIV status.
The social and interpersonal influences of HIV-related stigma indicated the need for behavioral family-based treatment in HIV care, including meeting the physical, social, and emotional needs of PLWH. Behavioral family-based treatment engages families while building interpersonal relationships between PLWH and their families and can address overall family function. To date, little research has focused on behavioral family-based treatment models for PLWH. However, family-based treatment practices have been successful in improving behavioral health outcomes in adolescents with substance disorders (Liddle et al., 2018), adolescent and parental obesity (Epstein, Paluch, Roemmich, & Beecher, 2007), and adults with severe mental illness (Pitschel-Walz, Leucht, Bäuml, Kissling, & Engel, 2001). Future research should examine behavior family-based care in PLWH as a promising practice to address HIV stigma in families. Additionally, intergenerational family dynamics, such as family history of health-enhancing behaviors, should be examined within the cultural context of the southern United States so that health care providers have access to knowledge and training on the dynamic experiences of families and the interplay between families and help-seeking behaviors on overall treatment outcomes in this region.
Quantitative and qualitative syntheses both found spirituality and religion to be a coping strategy used by PLWH. Spirituality and coping reduced internal HIV stigma and depressive symptoms in PLWH. As described in Grodensky et al. (2015), spirituality and church were a source of strength and built resiliency. Southern religious involvement in health outcomes has been well documented and has been found to have beneficial implications for mental health and other health outcomes (Ellison, 1995). In particular, in racially and ethnically defined communities, religious institutions and faith communities serve as invaluable resources to address HIV-related stigma and enhance resiliency and coping in PLWH. However, our synthesis indicated that church attendance was also linked to experiences of stigma. Faith, religion, and spirituality improved resiliency and coping but human elements (e.g., lack of HIV knowledge, perceptions) relative to aspects of spirituality and faith also lead to increased experiences of stigma. Thus, it is critical to ensure that faith communities are educated about HIV in order to contribute as buffers rather than as opposing forces to behavior change.
Our syntheses found that living in small urban and rural areas were often associated with internalized HIV stigma. Community settings can have a major impact on how PLWH experience and process stigma. Researchers have examined the meditational pathways and processes of perceived community stigma (PCS), asserting that PCS was associated with affective, cognitive, and mental health factors, which were all mediated by internalized stigma (Turan et al., 2017). Furthermore, a serial mediation found that PCS was associated with interpersonal factors (social support, physician trust) and mediated by internalized stigma and anticipated stigma. There is a need for further exploration on how HIV-related stigma is processed at various ecological levels.
Multidimensional Stigma and Intersectionality
A review of the literature from 2002 to 2013 indicated that the majority of HIV stigma-related interventions addressed individual-level drivers of stigma, which are only one part of the stigmatization process (Stangl, Lloyd, Brady, Holland, & Baral, 2013). That review also found that literature on intersecting stigma was absent from the literature. Our review has provided additional knowledge concerning multilevel manifestations of stigma, which calls for interventions designed to address stigma at multiple levels throughout the stigmatization process.
Our findings highlight the unique experiences of PLWH and intersecting factors, such as race, gender, and environment, that influence exposure to multidimensional and concurring stigma. Research on intersectionality has transformational power and can improve understanding of individual experiences of privilege and oppression (Bogard, Murry, & Alexander, 2017). There has been an increase in research on intersectionality and the exploration of multidimensional forms of stigma; however, current research has not accounted for the fluidity, multidimensional, and bidirectional influences within and between ecological systems (Cook et al., 2014). We assert that intersectionality as an approach to investigate HIV-related stigma is critical for the development of effective and sustainable health strategies that emphasize preventive measures. Moreover, our study allowed us to identify different levels of HIV-related stigma and its influence on overall health outcomes; however, future research should explore the nature of social inequality and power differentials in PLWH who experience stigma (Cook et al., 2014).
The systematic review search was conducted in December 2017 with no additional searches beyond March 2018. There is a possibility that new articles were published after March 2018. Thus, some relevant articles may not have been captured in this review. In addition, we focused specifically on HIV-related stigma in the U.S. South, and findings may not be generalizable to the broader population. However, such findings may be useful for further explorations of experiences of HIV-related stigma that are relevant and geographically unique to the south.
Our systematic review explored the social–ecological manifestations of HIV-related stigma in particular social, cultural, and historical contexts in the U.S. Deep South. Grounded in the social–ecological theory, we sought to better understand the multifaceted and interactive effects of personal and environmental factors that determine health-enhancing behaviors. More specifically, our systematic review examined the intersections of intrapersonal, interpersonal, and community factors of HIV-related stigma and the impact on PLWH. The findings indicated a need for behavioral family-based treatment options for the care of PLWH.
Additionally, study implications included the need for more culturally tailored interventions that specially address self-efficacy, self-esteem, and shame reduction in PLWH. An educated faith community could be used to improve self-efficacy, coping, and resiliency in PLWH in the U.S. South. Research in the area of intersectionality within ecological systems is crucial to understand the influences of HIV-related stigma in diverse communities and across cultures.
The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.
- HIV stigma-related factors impact people living with HIV across social–ecological levels leading to psychological burdens and reduced medication adherence.
- The process of stigmatization can influence treatment outcomes across the care continuum.
- Interventions should incorporate strategies that address multidimensional and bidirectional influences of stigma within and between ecological systems.
The authors thank Amy Edwards for her review of the research protocol and expert insight on the search strategy and methodology.
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