Journal of Psychosocial Nursing and Mental Health Services

CNE Article 

Voices of Women Facing HIV-Related Stigma in the Deep South

Michael V. Relf, PhD, RN, AACRN, ACNS-BC, CNE, FAAN; Megan Williams, MSW, MSPH; Julie Barroso, PhD, RN, FAAN

Abstract

One in 139 women will be diagnosed with HIV in their lifetime. Thirty-four years into the epidemic, stigma remains part of the trajectory of the disease process for all individuals with HIV. Stigma associated with HIV makes it difficult for women to access HIV testing and counseling, disclose HIV status to sexual partners and health care providers, seek and remain actively engaged in medical care, effectively self-manage the disease after diagnosis, and adhere to antiretroviral therapy. The current article reports the qualitative results from a study designed to test the feasibility and acceptability of a technologically delivered stigma intervention for women with HIV in the Southeastern United States. Qualitative analysis revealed women with HIV uniformly experience, anticipate, and/or internalize stigma associated with HIV. Consequently, women with HIV experience isolation and a threat to self-concept as they make decisions about disclosure, work to maintain the secrecy of their HIV status, and contemplate a future. [Journal of Psychosocial Nursing and Mental Health Services, 53(12), 38–47.]

Do you want to Participate in the CNE activity?

Abstract

One in 139 women will be diagnosed with HIV in their lifetime. Thirty-four years into the epidemic, stigma remains part of the trajectory of the disease process for all individuals with HIV. Stigma associated with HIV makes it difficult for women to access HIV testing and counseling, disclose HIV status to sexual partners and health care providers, seek and remain actively engaged in medical care, effectively self-manage the disease after diagnosis, and adhere to antiretroviral therapy. The current article reports the qualitative results from a study designed to test the feasibility and acceptability of a technologically delivered stigma intervention for women with HIV in the Southeastern United States. Qualitative analysis revealed women with HIV uniformly experience, anticipate, and/or internalize stigma associated with HIV. Consequently, women with HIV experience isolation and a threat to self-concept as they make decisions about disclosure, work to maintain the secrecy of their HIV status, and contemplate a future. [Journal of Psychosocial Nursing and Mental Health Services, 53(12), 38–47.]

Do you want to Participate in the CNE activity?

The National HIV/AIDS Strategy of the United States (White House Office of National AIDS Policy, 2010, p. iii) declared:

The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.

Unfortunately, 34 years into the epidemic, individuals with HIV still feel the effects of stigma and discrimination, including blame, shame, and embarrassment in their daily lives (Sayles et al., 2008; Sayles, Ryan, Silver, Sarkisian, & Cunningham, 2007). The current article uses descriptive qualitative data to understand the effects of HIV-related stigma on psychosocial well-being among women with HIV living in the Deep South, which is “considered to include Alabama, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and all or part of the adjacent states of Florida, Virginia, Tennessee, Arkansas, and Texas” (“Deep South,” n.d.).

Although the epidemic continues in historical urban epicenters, it has reached every state, with the Deep South having the highest rates of new HIV infections (Centers for Disease Control and Prevention [CDC], 2013c). Of 10 states accounting for 65% of all new HIV infections in 2011, seven are in the Deep South (CDC, 2013c). In this geographic region, higher HIV incidence and mortality rates are attributed to high levels of sexually transmitted infections and poverty (Reif et al., 2014).

One in 139 women will be diagnosed with HIV during their lifetime (CDC, 2013b), with African American and Hispanic women being disproportionately affected (CDC, 2013a,b, 2015). Sixty-four percent of new infections are among African American women and 15% are among Hispanic/Latina women, although they collectively comprise approximately 15% of the U.S. population (CDC, 2015). HIV infection rates are four times higher for Hispanic/Latina women and 20 times higher for African American women compared to White women. Consequently, one in 106 Hispanic/Latina women and one in 32 African American women will be diagnosed with HIV during their lifetime.

HIV, AIDS, and Stigma

“Working to end the stigma and discrimination experienced by people living with HIV is a critical component of curtailing the epidemic” (White House Office of National AIDS Policy, 2010, p. 35). For many individuals with, or at risk for, HIV, stigma increases the difficulty of accessing HIV testing and counseling, disclosing HIV status to sexual partners and health care providers, seeking and engaging in medical care, effectively self-managing the disease after infection, and adhering to antiretroviral therapy (Mallinson et al., 2005; Sayles et al., 2007; Sayles, Wong, Kinsler, Martins, & Cunningham, 2009). All too frequently, HIV-related stigma is associated with individuals accessing treatment inconsistently or late in the disease process, leading to unnecessary disability and/or death (Keusch, Wilentz, & Kleinman, 2006; Mallinson et al., 2005).

In Goffman's (1963) classic work, Stigma: Notes on the Management of Spoiled Identity, stigma was conceptualized to include an abomination of the body or a blemish of individual character. Stigma is a social phenomenon that occurs when an individual is evaluated as having an undesirable trait or behavior and deemed imperfect by societal standards (Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013; Herek, 1999; Whetten, Reif, Whetten, & Murphy-McMillan, 2008). By linking individuals to an objectionable attribute, stigma impacts social status and interaction, destroys self-identity, and leads to rejection, isolation, and discrimination.

As one of the first scholars to conceptualize HIV-related stigma, Herek (1999) described it as the “prejudice, discounting, discrediting, and discrimination directed at people perceived to have AIDS or HIV” (p. 1107). Since this early conceptualization, four types of HIV-related stigma have been discussed in the literature. Herek's (1999) conceptualization is now considered enacted HIV stigma, where an individual with HIV directly experiences discrimination, stereotyping, and/or prejudice by others due to his/her HIV status. However, stigma associated with HIV can also be anticipated, perceived, and/or internalized by the individual with HIV (Earnshaw et al., 2013; Kalichman et al., 2009; Sayles et al., 2008). Anticipated HIV stigma is reflected in the concerns an individual has about discrimination or adverse events that might happen, should his/her HIV status become known by others. Perceived HIV stigma is linked to the beliefs an individual with HIV has about the public stigmatizing someone with HIV. In contrast, internalized HIV stigma occurs when negative attitudes, beliefs, and feelings associated with HIV are assimilated into the self, threatening self-concept and self-esteem.

Effectively coping with and managing the trajectory of stigma associated with HIV are essential in re-establishing a positive self-identity (Relf, Mallinson, Pawlowski, Dolan, & Dekker, 2005). Lower levels of perceived stigma, fewer episodes of AIDS-related discrimination, spiritual peace, increased levels of social support, and frequent use of active coping strategies are linked to general life satisfaction and overall quality of life among individuals with HIV (Chaudoir et al., 2012; Szaflarski, 2013). In contrast, individuals with higher levels of anticipated stigma experience more mental health problems and posttraumatic stress-related symptoms, engage in more risky sexual behaviors (Relf & Rollins, 2015; Whetten et al., 2008), and report a poorer quality of life (Holzemer et al., 2009) and reduced access to medical care (Mallinson et al., 2005; Sayles et al., 2009).

Effects of HIV-related stigma appear to be worse for women than men (Gonzalez, Miller, Solomon, Bunn, & Cassidy, 2008; Wolitski, Pals, Kidder, Courtenay-Quirk, & Holtgrave, 2008). Women who experience discrimination due to HIV have (a) more stress, suicidal ideations, depressive symptoms, and unprotected sexual episodes than men; (b) lower average scores on self-esteem and quality of life; and (c) are less likely than men to receive medical care for HIV (Wingood et al., 2007). African American women with HIV experience stigma internally as existential despair, socially as shunning and callousness, and institutionally as disregard (Buseh & Stevens, 2006).

Method

Design and Intervention

Because of the endemic nature and documented consequences of HIV-related stigma in women, a mixed-methods, randomized controlled trial was designed to determine the feasibility, acceptability, and use of implementing a low-cost, technologically delivered stigma reduction intervention for women with HIV. The second aim was to compare outcomes (i.e., internalized stigma, self-esteem, and coping self-efficacy) across time in women receiving the intervention. The third aim was established when 35 of 51 women in the intervention arm submitted handwritten comments (serendipitous qualitative data) in their personal Viewing Log at the end of the study. This third aim used the descriptive qualitative data from the Viewing Logs to understand the effects of HIV-related stigma on psychosocial well-being among women with HIV living in the Deep South.

A total of three articles, including the current article, have resulted from this mixed-methods randomized controlled trial. Each of these articles report different aspects of study and in no way report duplicative results. The first article addresses the second aim of the study and presents quantitative results documenting efficacy of the stigma intervention (Barroso et al., 2014). The second article addresses the first aim of the study and presents quantitative and qualitative results of the mixed-methods analyses designed to determine the feasibility of using an iPod touch® to deliver a stigma intervention with women with HIV and the acceptability of the vignettes/video delivered as a stigma reduction intervention (Relf et al., 2015). The current article addresses the third aim of the study and gives voice to the effects of HIV-related stigma on psychosocial well-being among women with HIV living in the Deep South.

The intervention video, “Maybe Someday: Voices of HIV-Positive Women,” was developed from the qualitative metasynthesis work of Sandelowski and Barroso (Sandelowski, Lambe, & Barroso, 2004); in developing a protocol to facilitate the systematic integration of findings across qualitative studies, Sandelowski and Barroso synthesized findings from qualitative results with women with HIV in the United States. With a sample of 1,780 women with HIV, most of whom were either pregnant or mothers and from diverse backgrounds (71% from minority groups), the metasynthesis work identified that these women engaged in unending work and care to self-manage HIV-related stigma (Corbin & Strauss, 1988). Although most women contracted HIV through heterosexual and monogamous relationships, it was not uncommon for them to experience blame for contracting HIV due to societal stereotypes perpetuating myths that women contract HIV through injection drug use, promiscuity, or prostitution. The metasynthesis also identified that in living with HIV, women worked to normalize it in daily life, sought education, engaged in advocacy work, participated in supportive communities, and managed information to prevent disclosure (Sandelowski et al., 2004).

The technologically delivered video intervention (45 minutes long) developed from the results of the qualitative metasynthesis work comprised five vignettes. Women in the intervention arm received a password-protected iPod touch with the video preloaded. Women in the control arm received an iPod touch without the video. The five vignettes defined stigma; examined potential responses to being stigmatized; assessed factors and processes to contemplate in relation to disclosing to children, family, and friends; and discussed planning a future as a woman with HIV, including engaging in intimate relationships. Sandelowski, Trimble, Woodard, and Barroso (2006) offer more detail about the vignettes.

Two African American women, two Hispanic women, and one Caucasian woman were included in the vignettes. Each woman shared difficult, personal details with an off-camera listener and afforded viewers the privilege of witnessing her reflections and, in some cases, decision making. A female narrator speaking directly to the camera (and viewer) offered an orientation to the program, introduced each character, debriefed each monologue, and provided a conclusion. The narrator informed viewers that the women were actors whose stories were amalgamations of those reported by women with HIV through research interviews.

The intervention was conceptualized to work via a process called narrative transportation, a mental process melding attention, imagery, and feelings (Green, 2004; Green & Brock, 2000; Green, Brock, & Kaufman, 2004). In the current study, narrative transportation allowed participants in the intervention arm (i.e., those who were randomized to view vignettes) to become absorbed and transported into the worlds of the women featured. Through narrative transportation, participants were able to explore situations applicable to their daily life in an external, nonthreatening manner. Women in the vignettes were conceptualized to connect with viewers on multiple levels, allowing viewers to acknowledge the interplay, connections, and potential disconnections between their HIV status and other aspects of their lives.

Women randomized to receive the intervention were asked to watch the video in its entirety a minimum of once per week for 4 weeks, then as they desired during Weeks 5 to 12.

Women in the intervention arm were provided a Viewing Log designed to capture intervention/viewing dose data in relation to watching the video. The Viewing Log included blank pages, providing women an opportunity to write thoughts, reactions, and feelings experienced while viewing the video. These written comments provided the serendipitous data, allowing the current authors to understand the effect of HIV-related stigma on psychosocial well-being among women with HIV living in the Deep South. The current article gives voice to these women.

Sample and Recruitment

To recruit women with HIV, flyers were distributed at six sites, including infectious disease clinics at two university-affiliated medical centers, county health departments, and Ryan White–funded clinics (i.e., a type of government-funded clinic for individuals with HIV without insurance). These six sites provide HIV-oriented medical services to women across central North Carolina, including women from urban and rural locations. Potential study participants were instructed (on the flyer) to contact the study office for eligibility. Recruitment occurred during the last two quarters of 2011 and the first 4 months of 2012.

In the 3 years since data were collected, the number of new cases of women with HIV in the United States has remained constant, with African American and Hispanic women comprising approximately 85% of new diagnoses. Epidemiological data documents that the Deep South continues to have the highest rates of new diagnoses. The CDC (2014) continues to document that one in seven individuals with HIV are unaware of their status and that <40% of individuals with HIV in the United States achieve the desired treatment outcome: being actively engaged in HIV medical care and on antiretroviral therapy with viral suppression. Since data collection, two important clinical changes have occurred. First, National HIV Treatment Guidelines now recommend that all individuals with HIV, regardless of CD4 T-cell count or viral load, should be on antiretroviral therapy (U.S. Department of Health and Human Services, 2015). Second, a new hepatitis C treatment is 96% effective in curing the infection (Naggie et al., 2015). Although these clinical advances are significant, they are not relevant to the current study because efficacy of the intervention to promote adherence or engagement in care was not specifically assessed. Further, although many individuals are diagnosed with both HIV and hepatitis C virus, the current study did not examine the possibility of dual stigmatization.

The current study protocol required screening women using the Internalized HIV Stigma Scale (Sayles et al., 2008). Women who scored ≥40 (i.e., the median score on the scale) were eligible for inclusion. Consequently, participants had moderate to high levels of internalized HIV-related stigma at the time of enrollment. Participants also had to be 18 or older, able to communicate in English, and mentally competent (determined by recognition of one's circumstance, demonstrating an understanding of the purpose of the study, and voluntarily communicating a choice to participate). Ninety-nine women were enrolled, with 48 randomized to the control group and 51 randomized to the intervention group. All participants completed questionnaires related to internalized stigma, self-esteem, and coping self-efficacy at baseline and 30 and 90 days.

Qualitative Data Collection and Management

Women in the intervention arm were asked to return their completed Viewing Log books to the study coordinator (M.W.) at the completion of the study. Of 51 women in the intervention arm, 35 provided written comments in the Viewing Log. Notations in the Viewing Log were transcribed verbatim. Each transcription included demographic information of the participant (i.e., age, self-identified race/ethnicity, and time since HIV diagnosis) to provide context during qualitative data analysis.

Data Analysis

Written narratives from Viewing Logs allowed the current authors to understand and appreciate the nuances and complexities of living with HIV and facing HIV-related stigma among women living in the Deep South. Three study team members (M.V.R., M.W., J.B.) completed the narrative data analysis. All three team members are trained health professionals (RN or social worker) with extensive clinical and research experience working with individuals with HIV. Each member of the data analysis team read the transcripts, striving to appreciate and understand the women's experiences with HIV-related stigma.

At a series of analysis meetings, the narratives were discussed, appreciation of the personal experiences documented was sought, findings were critiqued, and identified themes were compared to the extant literature. Through individual and team-level analysis, themes synthesizing women's experiences with HIV-related stigma were identified. To ensure credibility, dependability, trustworthiness, and transferability of the identified themes (i.e., measures of reliability and validity in qualitative research [Lincoln & Guba, 1985]), data were analyzed comparing the experiences of women with HIV by age, race/ethnicity, and years since diagnosis.

Human Subjects Protection

Study procedures were approved by Duke University's Institutional Review Board. Further, a Certificate of Confidentiality was obtained from the National Institutes of Health. All members of the study team completed human subjects training as required by Duke University. In addition, each member of the study team had clinical experience working with vulnerable populations, including women living with HIV. As per the study protocol, referral mechanisms were established if there were suspected cases of mental illness, physical illness, and/or intimate partner violence.

At the time of enrollment, written informed consent was obtained from each participant. Women were asked to identify the preferred mechanism (i.e., telephone, text message, e-mail, or mail) for receiving contact from a member of the study team. This was necessary to prevent unplanned disclosure of participants' HIV status and to ensure participants' confidentiality and privacy. The study team explained to participants at the time of enrollment that the study would rent a post office box for them to ensure confidentiality and privacy related to participating in the study, if desired; no participants used this option. To further protect the privacy and confidentiality of participants, the video was password protected on the iPod touch. During the course of the study, there were no unplanned disclosures or breaches in confidentiality or privacy of participants. Further, there were no referrals for mental/physical illness or intimate partner violence.

Results

The third aim of the study was to understand the effects of HIV-related stigma on psychosocial well-being among women with HIV living in the Deep South. Participants were from diverse racial and ethnic backgrounds, with 82% self-identifying as African American. Mean age of participants was 46.3 and mean number of years since diagnosis was 13.4 (Table).

Sociodemographic Characteristics Among Women in the Intervention Arm (N = 51)

Table:

Sociodemographic Characteristics Among Women in the Intervention Arm (N = 51)

The Stigma of HIV/AIDS

Through immersion in the data, the voices of women in the Deep South facing HIV-related stigma and its consequences came to be understood. Individual and aggregate effects of the various forms of HIV-related stigma threatened the self-concept, resulting in secrecy and isolation and making it difficult or impossible to disclose one's serostatus. However, while simultaneously experiencing HIV-related stigma and its consequences, participants contemplated their future as women with HIV in the context of stigma.

Across racial/ethnic groups, women anticipated stigma, stating, “Stigma is just something that I am going to have to handle to the end,” “Stigma will always be there regardless,” and “There is still a stigma and I believe there always will be one.” Challenging the ubiquitous nature of stigma as part of having HIV, a biracial African American/Hispanic woman asked, “Why don't other illnesses have such stigmas? Why can't it be as easy to talk about like other disease[s]?” One African American woman acknowledged, “It's a fact of life that there's still a lot of stigma attached to an HIV diagnosis” and, as a consequence, stigma “plays a part in how difficult it might be for you to tell other people that you are HIV-positive.” For this woman, because of the anticipated stigma, her “life has become a closet life. I hide my pills, I hide paperwork, I hide my feelings. Everything is a secret.” Another woman exemplified the definition of internalized stigma, stating, “Trying to keep my status a secret has been stigmatizing to myself.” Internalized HIV-related stigma was a significant threat to self-concept. In an attempt to preserve self-concept, women hid their HIV diagnosis; carefully calculated the risk, benefits, and necessity of disclosing their HIV status to others; and described a self-imposed isolation.

Threatened Self-Concept

Participants experienced threats to self-concept as a consequence of having HIV. Developing a self-concept, whether positive or negative, is a dynamic process of how one sees and thinks about the self (Folse, 2013). An individual's self-concept in turn influences his/her identity, body image, self-esteem, and role performance, which impacts decision making and relationships. Women of all ages, across all racial/ethnic groups, with varying periods of time since HIV diagnosis, described feeling “ashamed,” “scared,” “dirty,” “contaminated,” “judged,” “guilty,” “hurt,” “deserving,” and “disgrace.” Demonstrating how HIV becomes integrated into and functions as a threat to self-concept, one woman recalled an experience in church:

My pastor had altar call at church and he was praying for people with different conditions and he said HIV as one. I thought my heart would stop. I said to myself, “Does he know about me? How did he find out? What does he think of me?” My mind just went into a frenzy and has been since. This is what this condition does to you. The stigma of being scared, ashamed, embarrassed. In your mind, you know people think you got it one way and it doesn't matter to them if it was one person or 10, you must have been wild. My mother won't even ask, “How do you think you got it?” Nobody has.

A woman in her 60s who was diagnosed 6 years prior highlighted what many women living with HIV experience, explaining, “I still [feel] very ashamed and judged…. I still find it very difficult to talk about myself and my diagnosis.” Similarly, a White woman in her late 40s talked about being judged as a drug user when she was infected by her husband of 10 years. Other women talked about feeling “very dirty sometimes, having to admit that I am HIV-positive” or trying to work through internalized issues associated with “the fact that I am uncomfortable because of my denial and my shame because of my diagnosis” and feeling “ashamed that I have this [HIV].”

Women mentioned not only being judged as being a drug user or prostitute or as being wild, but being witness to individuals judging others because of HIV. An African American woman diagnosed for >20 years stated:

I personally think that HIV stigma will always be around because not everyone will look or view HIV the same way. I've been in the same room where some women having lunch [were] talking about HIV, and it really hurt me to listen to some of the things they were saying about [women with HIV], saying, “HIV women deserve to have the disease, they are dirty people, not worth living, and it was their fault.”

Other women talked about individuals being cruel and without compassion when talking about individuals with HIV/AIDS.

The enacted, anticipated, and/or internalized stigma women experienced led them to question their personal beliefs about the self; their attributes and worth; past, current, and future roles; and personal, familial, and intimate relationships. Illustrative of the despair associated with the threat to self-concept, one woman asked, “I wonder sometimes, what is the point? Why bother?” Another woman stated, “I became depressed.”

Living With a Secret

After being diagnosed with HIV, many women wrote about how they kept their HIV status a secret, anticipating stigma if others found out. A middle-aged African American woman living with HIV for 20 years explained:

Why does having HIV feel like such a dirty little secret? We all got to die with something. To me it's no worse than having cancer. Why is this illness such a voodoo or a complete curse on your life? It's like saying HIV is a forbidden word…. If I came out with this, would my family be ashamed? I feel like I have to keep it a secret so they don't feel ashamed…. I'm so tired of keeping it a secret. I don't even feel comfortable saying it out loud to my mother.

Keeping the secret may serve as one mechanism to maintain self-concept due to internalized shame, fear of being judged, and feeling guilty, dirty, and contaminated. However, living with a secret is tiring work and not without its struggles. A middle-aged African American woman commented, “For me, it took a long time before I told anyone about me [having] HIV. Five years is a long time to hold something like this in.” Recognizing the burden of keeping the secret, another African American woman shared, “I always feel like I have this huge secret that is holding me down against my will.”

Some women chose to disclose their status and later regretted that decision. A middle-aged White woman with HIV for 22 years wrote about the “harsh blow to me mentally and spiritually to see the reactions of those I did tell…. I thought they would care, instead they did not want to be around me.” Consequently, she was fearful that her secret would be known and now works to make sure that it is not. After viewing the video, an older African American woman decided to tell her children. She reported that “they sort of knew,” which “took a lot of pressure off.” Unfortunately, she still believed the stigma and made her children promise that they would not reveal her secret.

Deciding to Disclose

Many women wrote about their fears and concerns related to disclosing their HIV status. The calculus of disclosure as described by Sandelowski et al. (2006) is a process of decision making in which an individual with HIV examines the risks, benefits, and possible outcomes and consequences related to telling others his/her HIV status. Women stated that disclosure of HIV status was on a “need-to-know basis” and included their health care providers and partners. “I haven't decided to tell anyone else other than those who really need to know because I don't feel sick,” affirmed one woman. Another woman stated, “I have found that talking to nurses, social workers, [and] health care providers isn't much help. The best support is to talk with other women who have been through it.”

Demonstrating how disclosure is related to stigma and a threat to self-concept, one woman stated, “I will not tell anyone about my HIV. I will not tell because they will hate me.” Another woman believed “telling people can put you in a box in the ground.” For both women, disclosure was associated with being judged and ostracized, powerful forms of enacted and/or anticipated stigma. Yet, women believed that disclosure would relieve stress, isolation, and work associated with keeping the secret. One woman asked, “Why can't I share my status? If it was cancer I could share it. If I had diabetes, I could share it. People would care. The general population still does not get it.” In this situation, she fully anticipated stigma if she were to disclose her status. Similarly, another woman stated:

I wish I could feel good about telling my status. I just don't feel that it's a safe topic to discuss because it does have a stigma attached to it and people won't stop associating HIV with sleeping around. Small towns are not that accepting. Oh, how I want to tell the world, but the world around me now is just not ready…. Why start a relationship or even dating when you know you got to reveal that status? Are you sure you would have the nerve to tell them once you have gotten emotionally involved? Why put yourself through that? Someone could get hurt. Oh, why does this have to be so complicated? Why can't it be like having the chicken pox?

Experiencing Isolation

Many women talked about feelings of “isolation” and “being alone.” Isolation was frequently a self-imposed process to maintain self-concept by preventing the experience of stigma and eliminating the need to disclose to another person. A middle-aged African American/Hispanic woman asked:

If I'm not alone, why do I feel alone? Yes, three family members know, but it [is] like a subject you don't discuss like they use [sic] to do in the old days if someone got pregnant. They sent them away until the baby was born. Then they came home like nothing has happened. That's the way I'm going through life now.

Not only did women experience isolation and distancing from their family members, but also isolation from intimate relationships. “I am afraid to date because of my HIV,” acknowledged one woman. Regarding relationships, another woman stated, “I have stopped and that's causing me to be lonely.” Anticipating rejection, a form of enacted stigma, another woman explained, “Maybe one day I will be able to be open. It is extra pressure telling [the] opposite sex. The feeling of being let down. People afraid of you. Feeling if [you] tell, it will scare them away.”

To maintain a positive self-concept, one middle-aged African American woman living with HIV for 16 years said:

Sometimes I just stay to myself to keep from being ask[ed] about me [having] HIV. It's hard being around a lot of people. I know it's not good to be by yourself a lot. But for me, it's my way of keeping me safe. I feel like people are talking about me. Sometimes, I push myself to get out and go places, or if I do get out, I try to stay gone for a long time. I'm doing better at that.

In contrast, a young African American woman living with HIV since age 18 declared:

It's a job keeping people out of your life. If you don't spread your seeds and take care of them, they won't grow. But when it do [sic] grow, it is so beautiful. Flowers and life is [sic] just the same. Once you come to the surface, you can't do anything but bloom.... I want to bloom.

This woman found comfort in others, including her mother and three friends, who supported her and cared about her after disclosing her HIV status.

Thinking About the Future

Although women experienced, anticipated, or internalized stigma, they also contemplated a future. Like the young woman who wanted to bloom, other women also wanted to return to living. As one woman said, “After knowing of my HIV for 19 years, it's a scary thing to realize you do have a future as an ‘older’ woman and you have opportunities and I am still alive!”

Through the video intervention, one woman found inspiration, stating, “I know I've said that I'm stuck with this stigma, but I can still watch this and hope that this will be for real one day. I hope that this helps us to overcome our stigma.” For another woman, the video provided hope that her future might change: “This week I was supposed to have gone to an award ceremony to be presented with an award for peer volunteer services. ‘Maybe someday’ I'll be able to go to one of these ceremonies…just not today.”

Another woman envisioned a future and hopeful self-concept, exemplified by her saying, “When the end comes, I want to be remember[ed] as a wonderful person with courage.” Another woman, seeing a hopeful future, used each letter of stigma to redefine it:

  • S–stop

  • T–treating and

  • I–ignoring

  • G–God's

  • M–mercy

A–always love each other no matter what. Let us support each other in the time that is needed so that we can together find the cure for HIV/AIDS.

Discussion

Women in the current study described all forms of HIV-related stigma (i.e., enacted, anticipated, perceived, and/or internalized), supporting conceptualizations previously documented (Earnshaw et al., 2013; Goffman, 1963; Herek, 1999; Kalichman et al., 2009; Sayles et al., 2008). Whether hearing discriminatory comments from coworkers about women with HIV or fearing a pastor learned of their HIV status, women described the overwhelming effect that HIV-related stigma has on daily life. As described by Earnshaw et al. (2013), women fully anticipated stigma in nearly every aspect of their lives as a consequence of being diagnosed with HIV. This anticipated stigma, compounded by instances of enacted stigma, was frequently internalized by women. Consequently, there was incongruence in how women ideally saw themselves and what was actually happening in their lives; this incongruence frequently resulted in a threat to self-concept.

Women described myriad behavioral responses associated with the anticipated HIV-related stigma. Similar to a study among individuals living with HIV in Tennessee (Audet, McGowan, Wallston, & Kipp, 2013), many women voiced experiences with self-imposed isolation. Demonstrating the intersection of the threats to self-concept, women with HIV recognized the need to inform sexual partners yet anticipated rejection with disclosure, resulting in avoidance of intimate relationships and isolation. Through self-imposed isolation, compounded by negative experiences after disclosing previously, many women described how stigma associated with HIV resulted in loneliness, depression, fear, anger, shame, and embarrassment. These emotions and behavioral responses are similar to findings from other studies of women not only in the Deep South but around the world.

For women with HIV in the Southeastern United States, negative effects of HIV-related stigma not only impact self-concept but also quality of life, self-esteem, well-being, and the ability to seek care, maintain adherence to antiretroviral therapy, and actively engage in HIV-oriented primary care (Wingood et al., 2007). To prevent experiencing the anticipated stigma and maintain an affirming self-concept as a woman with HIV, many choose to keep their HIV status a secret from friends, coworkers, employers, members of their religious community, and even family members. The work of keeping HIV a secret is a major burden for many women. Keeping the secret is a significant psychological stressor and has potential to negatively impact immune status and lead to psychological and physiological fatigue.

Overwhelmingly, women in the current study fully anticipated HIV-related stigma in their interactions with family, children, friends, clergy, and coworkers. Some women were recipients of enacted stigma, including negative comments, prejudice, and unplanned disclosures, whereas others internalized the stigma, resulting in a changed self-concept where they view themselves as dirty or contaminated. This internalization supports Goffman's (1963) construction of stigma to include an abomination of the body or a blemish of individual character. The self-concept is further threatened when women internalize feelings of shame, embarrassment, and hurt.

Conclusion

As women shared their stories, their collective voices illustrated the enacted, anticipated, and internalized stigma, resulting in “prejudice, discounting, discrediting, and discrimination,” as described by Herek (1999, p. 1107). Until HIV/AIDS is viewed as socially acceptable as cancer or diabetes, women with HIV/AIDS will continue to experience stigma in its many forms. To achieve the goal of the National HIV/AIDS Strategy of the United States (2010), where individuals with HIV/AIDS will be “free from stigma and discrimination” (p. iii), much work remains. Until then, it is critical to help women with HIV adapt, cope, and manage the threat to self-concept associated with HIV and its related stigmas.

References

  • Audet, C.M., McGowan, C.C., Wallston, K.A. & Kipp, A.M. (2013). Relationship between HIV stigma and self-isolation among people living with HIV in Tennessee. PLoS One, 8, 1–8. doi:10.1371/journal.pone.0069564 [CrossRef]
  • Barroso, J., Relf, M.V., Williams, M.S., Arscott, J., Moore, E.D., Caiola, C. & Silva, S. (2014). A randomized controlled trial of the efficacy of a stigma reduction intervention for HIV-infected women in the deep south. AIDS Patient Care & STDs, 28, 489–498. doi:10.1089/apc.2014.0014 [CrossRef]
  • Buseh, A.G. & Stevens, P.E. (2006). Constrained but not determined by stigma: Resistance by African American women living with HIV. Women and Health, 44, 1–18. doi:10.1300/J013v44n03_01 [CrossRef]
  • Centers for Disease Control and Prevention. (2013a). HIV among African Americans. Retrieved from http://www.cdc.gov/hiv/pdf/risk_HIV_AAA.pdf
  • Centers for Disease Control and Prevention. (2013b). HIV among Hispanics/Latinos in the United States and dependent areas. Retrieved from http://www.cdc.gov/hiv/pdf/risk_latino.pdf
  • Centers for Disease Control and Prevention. (2013c). HIV surveillance report, 2011. Retrieved from http://www.cdc.gov/hiv/library/reports/surveillance/2011/surveillance_Report_vol_23.html
  • Centers for Disease Control and Prevention. (2014). Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 U.S. dependent areas—2012. Retrieved from http://www.cdc.gov/hiv/pdf/surveillance_report_vol_19_no_3.pdf
  • Centers for Disease Control and Prevention. (2015). HIV among women. Retrieved from http://www.cdc.gov/hiv/pdf/risk_women.pdf
  • Chaudoir, S.R., Norton, W.E., Earnshaw, V.A., Moneyham, L., Mugavero, M.J. & Hiers, K.M. (2012). Coping with HIV stigma: Do proactive coping and spiritual peace buffer the effect of stigma on depression?AIDS and Behavior, 16, 2382–2391. doi:10.1007/s10461-011-0039-3 [CrossRef]
  • Corbin, J. & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Francisco, CA: Jossey-Bass.
  • Deep South. (n.d.). Retrieved from http://www.merriam-webster.com/dictionary/Deep South
  • Earnshaw, V.A., Smith, L.R., Chaudoir, S.R., Amico, K.R. & Copenhaver, N.M. (2013). HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework. AIDS and Behavior, 17, 1785–1795. doi:10.1007/s10461-013-0437-9 [CrossRef]
  • Folse, V.N. (2013). Self-concept. In Potter, P.A., Perry, A.G., Stockert, P.A. & Hall, A.M. (Eds.), Fundamentals of nursing (8th ed., pp. 658–673). St. Louis, MO: Elsevier Mosby.
  • Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
  • Gonzalez, A., Miller, C.T., Solomon, S.E., Bunn, J.Y. & Cassidy, D.G. (2008). Size matters: Community size, HIV stigma, and gender differences. AIDS and Behavior, 13, 1205–1212. doi:10.1007/s10461-008-9465-2 [CrossRef]
  • Green, M.C. (2004). Transportation into narrative worlds: The role of prior knowledge and perceived realism. Discourse Processes, 38, 247–266. doi:10.1207/s15326950dp3802_5 [CrossRef]
  • Green, M.C. & Brock, T.C. (2000). The role of transportation in the persuasiveness of public narratives. Journal of Personality and Social Psychology, 79, 701–721. doi:10.1037/0022-3514.79.5.701 [CrossRef]
  • Green, M.C., Brock, T.C. & Kaufman, G.F. (2004). Understanding media enjoyment: The role of transportation into narrative worlds. Community Theory, 14, 311–327. doi:10.1111/j.1468-2885.2004.tb00317.x [CrossRef]
  • Herek, G.M. (1999). AIDS and stigma. American Behavioral Scientist, 42, 1106–1116. doi:10.1177/00027649921954787 [CrossRef]
  • Holzemer, W.G., Human, S., Arudo, J., Rosa, M.E., Hamilton, M.J., Corless, I. & Maryland, M. (2009). Exploring HIV stigma and quality of life for persons living with HIV infection. Journal of the Association of Nurses in AIDS Care, 20, 161–168. doi:10.1016/j.jana.2009.02.002 [CrossRef]
  • Kalichman, S.C., Simbayi, L.C., Cloete, A., Mthembu, P.P., Mkhonta, N. & Ginindza, T. (2009). Measuring AIDS stigmas in people living with HIV/AIDS: The Internalized AIDS-Related Stigma Scale. AIDS Care, 21, 87–93. doi:10.1080/09540120802032627 [CrossRef]
  • Keusch, G.T., Wilentz, J. & Kleinman, A. (2006). Stigma and global health: Developing a research agenda. Lancet, 367, 525–527. doi:10.1016/S0140-6736(06)68183-X [CrossRef]
  • Lincoln, Y.S. & Guba, E.G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
  • Mallinson, R.K., Relf, M.V., Dekker, D., Dolan, K., Darcy, A. & Ford, A. (2005). Maintaining normalcy: A grounded theory of engaging in HIV-oriented primary medical care. Advances in Nursing Science, 28, 265–277. doi:10.1097/00012272-200507000-00008 [CrossRef]
  • Naggie, S., Cooper, C., Saag, M., Workowski, K., Ruane, P., Towner, W.J. & Sulkowski, M. (2015). Ledipasvir and sofosbuvir for HCV in patients coinfected with HIV-1. New England Journal of Medicine, 373, 705–713. doi:10.1056/NEJMoa1501315 [CrossRef]
  • Reif, S.S., Whettan, K., Wilson, E.R., McAllaster, C., Pence, B.W., Legrand, S. & Gong, W. (2014). HIV/AIDS in the Southern USA: A disproportionate epidemic. AIDS Care, 26, 351–359. doi:10.1080/09540121.2013.824535 [CrossRef]
  • Relf, M.V., Mallinson, K., Pawlowski, L., Dolan, K. & Dekker, D. (2005). HIV-related stigma among persons attending an urban HIV clinic. Journal of Multicultural Nursing & Health, 11, 14–22.
  • Relf, M.V. & Rollins, K. (2015). HIV-related stigma among an urban sample of persons living with HIV/AIDS at risk for dropping out of HIV-oriented primary medical care. Journal of the Association of Nurses in AIDS Care, 26, 36–45. doi:10.1016/j.jana.2014.03.003 [CrossRef]
  • Relf, M.V., Silva, S.G., Williams, M.S., Moore, E., Arscott, J., Caiola, C. & Barroso, J. (2015). Feasibility of using an iPod touch device and acceptability of a stigma reduction intervention with HIV-infected women in the Deep South. AIDS and Behavior, 19, 1896–1904. doi:10.1007/s10461-015-1031-0 [CrossRef]
  • Sandelowski, M., Lambe, C. & Barroso, J. (2004). Stigma in HIV-positive women. Journal of Nursing Scholarship, 36, 122–128. doi:10.1111/j.1547-5069.2004.04024.x [CrossRef]
  • Sandelowski, M., Trimble, F., Woodard, E.K. & Barroso, J. (2006). From synthesis to script: Transforming qualitative research findings for use in practice. Qualitative Health Research, 16, 1350–1370. doi:10.1177/1049732306294274 [CrossRef]
  • Sayles, J.N., Hays, R.D., Sarkisian, C.A., Mahajan, A.P., Spritzer, K.L. & Cunningham, W.E. (2008). Development and psychometric assessment of a multidimensional measure of internalized HIV stigma in a sample of HIV-positive adults. AIDS and Behavior, 12, 748–758. doi:10.1007/s10461-008-9375-3 [CrossRef]
  • Sayles, J.N., Ryan, G.W., Silver, J.S., Sarkisian, C.A. & Cunningham, W.E. (2007). Experiences of social stigma and implications for healthcare among a diverse population of HIV positive adults. Journal of Urban Health, 84, 814–828. doi:10.1007/s11524-007-9220-4 [CrossRef]
  • Sayles, J.N., Wong, M., Kinsler, J.J., Martins, D. & Cunningham, W.E. (2009). The association of stigma and self-reported access to medical care and anti-retroviral therapy adherence in persons living with HIV/AIDS. Journal of General Internal Medicine, 24, 1101–1108. doi:10.1007/s11606-009-1068-8 [CrossRef]
  • Szaflarski, M., (2013). Spirituality and religion among HIV-infected individuals. Current HIV/AIDS Reports, 10, 324–332. doi:10.1007/s11904-013-0175-7 [CrossRef]
  • U.S. Department of Health and Human Services. (2015). Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Retrieved from https://aid-sinfo.nih.gov/guidelines/html/1/adult-and-adolescent-treatment-guidelines/0
  • Whetten, K., Reif, S., Whetten, R. & Murphy-McMillan, L.K. (2008). Trauma, mental health, distrust, and stigma among HIV-positive persons: Implications for effective care. Psychosomatic Medicine, 70, 531–538. doi:10.1097/PSY.0b013e31817749dc [CrossRef]
  • White House Office of National AIDS Policy. (2010). National HIV/AIDS strategy for the United States. Retrieved from http://aids.gov/federal-resources/national-hiv-aids-strategy/nhas.pdf
  • Wingood, G.M., DiClemente, R.J., Mikhail, I., McCree, D.H., Davies, S.L., Hardin, J.W. & Saag, M. (2007). HIV discrimination and the health of women living with HIV. Women and Health, 46, 99–112. doi:10.1300/J013v46n02_07 [CrossRef]
  • Wolitski, R.J., Pals, S.L., Kidder, D.P., Courtenay-Quirk, C. & Holtgrave, D.R. (2008). The effects of HIV stigma on health, disclosure of HIV status, and risk behavior of homeless and unstably housed persons living with HIV. AIDS and Behavior, 13, 1222–1232. doi:10.1007/s10461-008-9455-4 [CrossRef]

Sociodemographic Characteristics Among Women in the Intervention Arm (N = 51)

Variable Value
Age (years) (mean, SD) 46.3 (10.1)
Years since contracted HIV (mean, SD) 13.4 (7.3)
Race/ethnicity (n, %)
  Black/African American 42 (82.4)
  White/Caucasian 6 (11.8)
  Hispanic/Latina 3 (5.9)

Keypoints

Relf, M.V., Williams, M. & Barroso, J. (2015). Voices of Women Facing HIV-Related Stigma in the Deep South. Journal of Psychosocial Nursing and Mental Health Services, 53(12), 38–47.

  1. Stigma increases the difficulty of accessing HIV testing and counseling, disclosing HIV status to sexual partners and health care providers, seeking and engaging in medical care, effectively self-managing the disease after infection, and adhering to antiretroviral therapy.

  2. Effectively coping with and managing the trajectory of stigma associated with the disease are essential in re-establishing a positive self-identity among individuals with HIV.

  3. Individual and aggregate effects of the various forms of HIV-related stigma threatened self-concept, resulting in secrecy and isolation and making it difficult or impossible to disclose one's HIV status.

Do you agree with this article? Disagree? Have a comment or questions?

Send an e-mail to the Journal at jpn@healio.com.

Authors

Dr. Relf is Associate Professor and Associate Dean for Global & Community Affairs, Ms. Williams is Clinical Research Coordinator, and Dr. Barroso is Professor, School of Nursing, Duke University, Durham, North Carolina.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This work was supported by the U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Nursing Research (grant 1R21NR021415; J.B.). The authors acknowledge Joyell Arscott, BSN, RN, ACRN; Elizabeth Moore, MPH, BSN, RN; Courtney Caiola, MSN, MPH, RN; and Susan Silva, PhD (statistician) for their contributions to the study. The authors also thank the study participants who helped in understanding the feasibility and acceptability of a stigma reduction intervention.

Address correspondence to Michael V. Relf, PhD, RN, AACRN, ACNS-BC, CNE, FAAN, Associate Professor and Associate Dean for Global & Community Affairs, School of Nursing, Duke University, DUMC 3322, 307 Trent Drive, Durham, NC 27710; e-mail: michael.relf@duke.edu.

Received: April 22, 2015
Accepted: October 05, 2015
Posted Online: October 27, 2015

10.3928/02793695-20151020-01

Sign up to receive

Journal E-contents