The Meaning and Perceptions of HIV-Related Stigma in African American Women Living With HIV in Rural Florida: A Qualitative Study

Abstract

African Americans are disproportionally affected by HIV/AIDS compared with other races/ethnicities, yet few studies have examined the cultural and/or attitudinal precursors that can make African American women vulnerable to HIV-related stigma in the rural South. This study qualitatively explored the meaning and perceptions of HIV-related stigma among African American women in Florida. Thirteen semi-structured interviews were conducted using an empirical phenomenological approach. Five observer perspectives and 26 participant perspectives emerged. Participants described stigma through self-conceptualizations (e.g., ignorance), experiences (e.g., judgments), psychological dysfunction (e.g., mental health), intersectionality (e.g., race, disability), and overcoming stigma (e.g., advocacy). Our findings reveal that HIV-related stigma is unpleasant for African American women. However, over time, women in this study developed strategies to combat stigma. Elements of stigma reduction described in this study may be an important starting point for designing a culturally targeted intervention for African American women living with HIV.

African Americans have the highest HIV prevalence in the United States compared with other races/ethnicities (Centers for Disease Control and Prevention [CDC], 2020a; 2020b). As attitudes toward HIV continue to shift, the face of HIV has shifted from gay men to people who acquired HIV through heterosexual contact. Thus, an increasing proportion of women may be more susceptible to HIV (Dray-Spira & Lert, 2003). Specifically, African American women make up only 6% of the total population, yet they account for 57% of HIV diagnoses among women (CDC, 2018). In 2018, HIV infection rates among African American women were 13 times higher than white women and 4 times higher than Hispanic/Latina women (CDC, 2018). One of the challenges of HIV treatment and care is stigma, a social process that devalues, discounts, and discredits individuals based on aspects of their identity (Goffman, 1963).

Although stigma associated with race and ethnicity can contribute to poor health outcomes, research suggests that having multiple co-occurring marginalized identities may lead to severe health consequences (Fletcher et al., 2016; Turan et al., 2017; Whittle et al., 2017). A Black heterosexual woman living with HIV, for example, may be distinct from a White gay male living with HIV. Even though they both live with HIV, other aspects of their identities, such as race, gender, substance use, underlying psychiatric disorders, and other disability (or disabilities), may shape their experiences. Similarly, the HIV-related Stigma, Engagement in Care, and Health Outcomes conceptual framework suggests that HIV-related stigma may manifest as internalized (i.e., accepting negative messages about self), enacted (i.e., judgment, discrimination), and/or anticipated (i.e., expecting negative treatment) stigma that may shape how people living with HIV (PLWH) approach their health (Turan et al., 2017).

Reducing HIV-related stigma by 20% in 2020 is a goal of the National HIV/AIDS Strategy (U.S. Department of Health and Human Services, 2017). Yet, we lack clarity on how HIV-related stigma affects vulnerable groups, including African American women in the rural South. Previous research found that low-income African American women living in rural Missouri were more likely to lack HIV prevention counseling during pregnancy, engage in condomless sex, and have sex with a partner that has not been tested for HIV compared with women in urban counties (Crosby et al., 2002). Moreover, the rural South has several structural and institutional barriers that complicate HIV-related care, including lack of services (e.g., basic transportation and/or homeless shelters), lack of providers who specialize in HIV treatment, and socioeconomic inequities (Pellowski, 2013). For these reasons, African American women living with HIV, who already experience stigma related to race and gender, may have additive burdens in the rural South. A study in South Carolina concurs with this notion, finding that African American women felt powerless against HIV-related stigma due to their marginalized racial and socioeconomic status (Fletcher et al., 2016). Despite documented consequences of HIV-related stigma, several studies have suggested that African American women are affected by larger social systems and other forms of stigma (i.e., race, gender) that contribute to poor health outcomes (Lekas et al., 2006; Swendeman et al., 2006). Thus, research is needed to fully understand the relationship between HIV-related stigma, gender, and race.

Despite African Americans being at increased risk of acquiring HIV, few studies in the United States have examined the cultural and/or attitudinal precursors that can make African American women vulnerable to HIV-related stigma in the rural South. It may be informative to explore HIV-related stigma in Florida, where African American women comprised 59% of HIV diagnoses in 2018—the highest proportion among women who received an HIV diagnosis compared with any other race (Florida Department of Health, 2020). Developing a clearer understanding of how HIV-related stigma may uniquely affect African American women in the rural South can inform clinical care and treatment. Therefore, the aim of this study was to explore the meaning and perceptions of HIV-related stigma among a sample of African American women living with HIV in Florida.

Methods

We used an empirical phenomenological approach to explore the meaning and perceptions of HIV-related stigma. The empirical phenomenological approach is based on the assumption that research is guided by the participants’ perspective first and confirmed by scientific explanation second (Aspers, 2009). This approach is also distinguished by using an established theory as a scheme of reference (Aspers, 2009). In this context, the HIV-related Stigma, Engagement in Care, and Health Outcomes framework was used to give focus to the study.

Recruitment

Data were drawn from a 30-day pilot study of the Wisepill medication event monitoring system (MEMS) among a convenience sample of community-dwelling African American women living with HIV in rural Florida (Lucero et al., 2020). Thirteen participants were recruited using two approaches: (a) research registries (i.e., Healthstreet and Florida Cohort Study) that contained contact information on PLWH who have consented to share their information for research opportunities and (b) collaboration with HIV peer support groups. The Florida Cohort study registry examines clinical and behavioral characteristics of participants living with HIV and/or persons with other health conditions throughout the state of Florida (Ibañez et al., 2020). Participants were given the option to be contacted for additional research opportunities. In addition, Healthstreet is a community engagement program that improves the health of the community by bridging the gap between health care and research (University of Florida, 2020). A team of community health workers interviewed residents about their health care needs, connected to medical and social services, and provided opportunities to participate in research. Finally, we participated in HIV peer support groups regularly in the greater Gainesville, Florida, geographic area, where we proposed our research study, and those interested were invited to contact us.

Eligible participants were (a) African American women, (b) at least 18 years of age or older, (c) self-reported an HIV diagnosis, (d) prescribed antiretroviral medications, and (e) not a student or employee at the University of Florida. Participants received an incentive of up to $75.00 on a cash card for their time and effort on completion of the 30-day study period.

Data Collection and Management

The research team obtained institutional review board approval from the University of Florida before commencing the study. Once we determined a potential participant’s eligibility, we met with the participant during an agreed on date and time at Healthstreet to inform participants about the background of the study, confidentiality procedures, benefits and potential risks, informed them that participation was voluntary, and that they could withdraw from participating at any time. After this explanation, each participant signed a written consent form. Afterward, we conducted training on the use of the MEMS and collected baseline measures including sociodemographic characteristics through a secured Research Electronic Data Capture database (RedCap). These procedures are described in detail elsewhere (Lucero et al., 2020).

At the end of the 30-day study period, participants met with a research team member at Healthstreet to collect follow-up self-reported and interview data to address barriers associated with MEMS use, medication adherence, and stigma. In the study reported here, qualitative data were obtained from 13 participants through a series of 11 semi-structured interview questions (Table 1). Throughout the research process, we aimed to remain open to relevant terms and definitions of stigma that emerged from the perspective of African American women living with HIV. We began the interview with questions that were intended to explore their personal meaning of HIV-related stigma such as: Have you ever heard of the word stigma? What does it mean to you? Have you ever experienced stigma based on your HIV? Regardless of the response given by participants, we shared a definition of HIV-related stigma to develop a common understanding to advance the discussion of how stigma affects their daily life. Subsequently, women were asked questions that assessed perceptions of HIV-related stigma in health care (i.e., Can you share with me ways stigma affected you accessing service or treatment) and community settings (i.e., Do you think stigma in general is a problem within the HIV community?). Finally, questions were asked about stigma in the context of managing co-occurring illnesses (i.e., Do you think your [disability] has made living with HIV harder?). The interviews lasted 1 to 2 hours and were tape-recorded. During each interview, responses were reflected back to the participants to ensure their narratives were recorded accurately and correctly. Finally, $25.00 was added to the participants’ cash card after completion of the interview. Data were collected from May 2018 through March 2019.

Table 1.

Semi-structured Interview Questions

1. Have you ever heard of the word stigma?

2. What does stigma mean to you?

3. When did you first learn about the word stigma?

4. Have you have had any direct experiences with stigma because of your HIV status?

• Can you tell me more about this?

5. Do you think stigma in general is a problem within the HIV community?

• Can you explain why?

6. Have you had any experiences with stigma and taking HIV medications?

7. Could you share with me any ways stigma has affected your daily life?

8. Can you share with me ways stigma affected you accessing service or treatment?

9. Can you share with me any positive impacts stigma has on your day-to-day life, if any?

10. What do you think we can do to reduce stigma in the HIV community?

11. Can you tell me a little more about your disability?

• Do you think your disability has made living with HIV harder?

• Has it changed the way you manage your HIV before and after your diagnosis?

• Do you think your disability affects your ability to manage your medications?

Interviews were transcribed verbatim through a transcription service, verified for accuracy, and imported into NVIVO 12 Plus (QSR International Pty Ltd, 2020). Each participant’s interview was given a unique numerical identifier to ensure the protection of the participant’s identity. Although the interview questions were informed by the HIV-related Stigma, Engagement in Care, and Health Outcomes conceptual framework to address certain empirical domains and themes, the framework was bracketed during data collection to avoid leading the participants’ responses. A coding framework was initially developed based on the responses of the participants and iteratively refined. All transcripts were coded by two researchers independently to describe, analyze, and justify constructs with the aim of capturing the perspective of the participants. Conceptual saturation of the meaning and perception of stigma was reached when no new information emerged in the analysis. Finally, an audit trail was generated to capture thought processes, reflection of the text, and to interpret personal reactions or biases (Lincoln & Guba, 1985).

Analysis

Empirical phenomenology is a stepwise approach with seven steps that were followed in this study (Aspers, 2009). First, the research aim was developed through immersion in the HIV stigma literature. Second, we had multiple interactions with African American women living with HIV by regularly attending peer support organizations, peer-led community-based events, and consumer advisory board meetings supporting PLWH throughout the duration of the study. Based on these interactions, we were able to gain an overview of the field and make informed judgments of the research (Aspers, 2009). Third, the HIV-related Stigma Engagement in Care, and Health Outcomes conceptual framework was selected to highlight the role of HIV-related stigma in shaping the health and well-being of PLWH (Turan et al., 2017). We aimed to maintain an independent stance for code development and theme consolidation; however, this framework was used because it was best suited to identify topical areas of inquiry as, to our knowledge, there are no existing models that frame the relationship between personal characteristics, HIV-related stigma, contextual factors, and health outcomes.

Moreover, first-order constructs, or participant perspectives, consisted of women’s “common sense” views and accounts of their meaning and perceptions of HIV-related stigma using their own words (Schütz, 1962). Each transcript was independently read by two research team members in its entirety to obtain an overall feeling of each participant’s experience (Schütz, 1962). Each participant perspective was supported by textual descriptions that consisted of verbatim responses of what the participant experienced in their own words. The two research team members then used an iterative process to independently cluster similar or repetitive responses that were reviewed for consistency and revised through a consensus process during weekly meetings. In the event of a discrepancy, a third research team member resolved conflict. After grouping participant perspectives that shared similarities together, we further consolidated these codes into second-order constructs. Second-order constructs, or observer perspectives, were how the researcher interpreted the participants’ narratives. Observer perspectives were informed by the literature to enable the researcher to relate the participant perspectives to the scientific world (Aspers, 2009; Turan et al., 2017). Once we developed the observer and participant perspectives, peer debriefing sessions took place with other team members to discuss analytical interpretations as a method of credibility. A codebook was developed and maintained by the first author that documented the process of developing and revising participant and observer perspectives. Specifically, the codebook included detailed justification, descriptions, and verbatim examples of the participants’ narratives as a method of dependability. Subsequently, we checked for unintended consequences and related our findings to the scientific literature and empirical evidence.

Results

Participant Characteristics

Table 2 contains the distribution of sociodemographic characteristics of 14 participants using counts and percentages. The mean age of the sample was 51 years (range: 34–63 years), and participants had been diagnosed with HIV for an average of 23 years (range: 6–33 years). Most participants (n = 9) had a high school education or greater, were heterosexual or straight (n = 13), and did not currently have a partner or spouse (n = 11). Two participants identified as transgendered women. All participants except for one completed the follow-up interview; therefore, we incorporated the data of 13 women in our analysis.

Table 2.

Sociodemographic Characteristics of African American Women (N = 14)

Characteristics	n (%)
Age (years), mean (SD), range	51.07 (11.5), 34–63
Years since HIV diagnosis, mean (SD), rangea	23 (8.5), 6–33
Highest grade/year of school completed, n (%)
Some high school (grades 9–12)	5 (35.7)
High school graduate or general education diploma	6 (42.9)
Some college or technical/trade school	1 (7.1)
College or trade school graduate	2 (14.3)
Sexual orientation, n (%)
Heterosexual or straight	13 (92.9)
Gay or lesbian	1 (7.1)
Other	0 (0.0)
Marital status, n (%)
Married/living with a long-term partner	3 (21.4)
Divorced	2 (14.3)
Widowed	2 (14.3)
Separated	2 (14.3)
Never married/single	5 (35.7)

^aThree respondents did not provide information on this measure.

Constructs

Five observer perspectives and 26 participant perspectives emerged from the data. Observer perspectives included: (a) self-conceptualization, (b) experiences, (c) intersectionality, (d) psychological dysfunction, and (e) overcoming stigma. These findings are described in detail in Table 3. A description of each observer perspective along with the associated participant perspectives are described in the following section.

Table 3.

Responses to the Meaning and Perceptions of HIV-Related Stigma

Observer Perspectives	Definitions	Participant Perspectives	Definitions	Examples
Self-conceptualization	Beliefs and attitudes in response to HIV and stigma	I don’t know	Feeling unsure about stigma and its existence	I don’t know exactly what it mean.
		Fear	Feeling fear about HIV status or feeling as though others are afraid of HIV	Um, I was terrified how this disease was gonna take, uh, effect of my life.
		Shame/blame	Internalizing thoughts, shame, blame and self-doubt about one’s self	I had blamed myself for it….
		It upsets me	A negative emotional response to HIV, including but not limited to feeling angry, annoyed, etc	I was mad at the world and the person that gave it to me.
		I don’t care	A lack of worry or unphased by HIV-related stigma	Doesn’t matter what other people think.
		Stay strong and positive	Demonstrating positive reactions to HIV including but not limited to self-love, self-care, and self-efficacy	Um, it made me a lot stronger to, you know, to criticism when people say.
Experiences	Judgment, stereotypes, prejudice, and discrimination of PLWH	Ignorance	Demonstrating lack of knowledge or being unaware of HIV	They have some insecurities within themselves, and they’re just ignorant.
		People just judge	General community perceptions of stigma	And there are the stigmas, why do you take so many pills.
		Family and peers	Stigma from individuals in immediate network such as family members or friends	I didn’t have any visitors or anything from my family.
		Health care providers	Stigma experienced from health care providers related to HIV	You would think that a doctor should know this information because they’re a doctor but they don’t because they’re not specializin’ in that.
		Spiritual beliefs	Stigma experienced from religious leaders and religious institutions	There’s a lot of them sneaky, two-faced ministers not right.
		Sharing/touching	Persons who avoid sharing drinks or food, close quarters, or touching	I don’t wanna eat off your same dishes.
		How I attracted it	Modes of acquiring HIV	My husband had it. He just didn’t bother to tell me he did.
		Laws	Macro-level laws and attitudes that work to the disadvantage of PLWH	That’s attempted murder ‘cause you deliberately give somebody HIV through sex without tellin’ ‘em, that’s a third-degree felony.
Psychological dysfunction	How the social environment affects mental/physical health and overall quality of life	Dying in silence	Feelings of existential despair and wanting to end life	She still she thinkin’ that she’s gonna lose me any day.
		Mental health	Psychological well-being and mental illness	I got to the point where I didn’t care about life, I was so suicidal.
		I don’t wanna take my medicine	Behaviors that detach individual from optimal health	I didn’t do nothing the docs told me to do. I did the opposite.
Intersectionality	The interconnectedness of marginalized identity(s) and its effects on living with HIV	Stigma comes in different shapes and forms	Holding greater than one stigmatized identity; general feeling of stigma beyond HIV (i.e., sexual orientation, race, ethnicity)	Like, a stigma. Gays—all gays have AIDS or HIV.
		Disability	Related to any condition that affects activity, participation, and physical impairment	You have a lot on your mind about your bills, your health, whatever goin’ on there. You could easily forget about takin’ that stuff.
Overcoming stigma	Adaptive and maladaptive ways individuals manage living with HIV	Avoidance	Avoiding people, places, and things that remind one about HIV; not discussing status with others	Um, cuz I’m very picky about a person who I sit in front of, and tell my business to or get on the phone and talk to.
		Disclosure	Revealing positive HIV status to others	I just told him. I said, I’m HIV positive. He said, well, I’m glad you told me that.
		Support system	Identifying relationships that helped one manage HIV	I gotten help that I wasn’t alone.
		Believe in God	Devoted to a religious belief	I’m a strong—I’m a strong dedicated Christian woman.
		Normal	Having HIV be normalized to society or comparing HIV to other normalized disease processes	I look like, just like a real person. Me. A person.
		Education	Systematic instruction or learning related to HIV	It’s gonna take them some time to educate and learn and grow.
		Advocacy	Defending negative or false beliefs about HIV	Then I became a member of the support group, going everywhere… to speak, because I found my calling.

Note. PLWH = people living with HIV.

Self-conceptualization

Self-conceptualization refers to attitudes and beliefs (past or present) about HIV and stigma that were shared by the participants in this study. Participant perspectives that informed self-conceptualization included not knowing about stigma, fear, blame/shame, feeling upset, not caring, and staying strong and positive (Table 3). Many participants highlighted that they did not know the definition of HIV-related stigma but recounted the fear, shame/blame, and the negative reactions they experienced when they were newly diagnosed with HIV. Despite the stigma the women in our sample experienced, they demonstrated that with a positive attitude they were able to overcome HIV-related stigma.

Participants often depicted feeling stigma when they were initially diagnosed but never knowing there was a term for it (e.g., “I might not have known that’s what they called it, but I’ve witnessed it.”) Despite the uncertainty about the definition of HIV-related stigma, many highlighted the fear and negative feelings they experienced when they were first confronted with their HIV diagnosis. Fear was commonly related to feeling afraid about disclosing HIV status or feeling afraid about their prognosis. “People are afraid to go to the health department, afraid to get their treatment there, or because of the label that’s on it ….” Fear was often accompanied with shame or blame. Participants devalued themselves because they had HIV, and accepting these negative thoughts often affected relationships, employment, and mental health. One participant noted:

with me bein’ like I am, and me havin’ HIV, certain jobs I have to be careful of trying to do, and certain jobs that you want and you can’t get into that field because your mind’ll say, “Well, what if this happened, or what if that happened?”

Although participants could not express what stigma was, they did remember how they felt when family, friends, or coworkers would devalue their identity or attribute HIV with negative characteristics. These reactions were often angry, mad, and/or sad; however, those feelings often abated over time. For example, “I was mad and angry, and then I was mad and angry with the person that I got it from, but my thing was he did tell me [HIV status], but I still had a relationship with him anyhow.”

Most participants appeared to be unphased by HIV-related stigma. They did not care to let it affect their lives. One participant stated, “I’ve never really faced any stigma. I’m gonna tell you that and I tell everybody this. Even though people do stigmatize you but people treat you how you perceive yourself.” Women in this sample echoed that they were unphased by stigma and were thus unconcerned and optimistic because it is important to remain strong or positive, despite the difficult times one may face:

because you have to build faith in yourself. You have to have that inner strength to not let people ignorance get to you to where you feel sorry for yourself. Because if you wanna have a healthy life you have to be strong, and that’s how I—I got way on that today bein’ strong, bein’ healthy.

Experiences

The women in our study generally reflected on stigma through their experiences, which referred to judgments, stereotypes, and discrimination based on how others reacted to HIV. HIV-related stigma was characterized based on the participant perspectives that encompassed: ignorance, people’s judgment, family and peer relationships, health care providers, spiritual beliefs, sharing or touching, how HIV was attracted, and laws (Table 3). A majority of participants attributed stigmatizing behaviors as ignorance and negative treatment from family and peers, health care providers, and religious entities. There were also commonalities across specific instances of stigma, such as individuals avoiding sharing with or touching PLWH, learning of HIV stigma through acquisition of the condition, and discriminatory HIV-related laws.

Respondents shared that people had ignorant assumptions about HIV. They further explained that individuals believe HIV only happens to people who engage in risky behaviors; however, with education, these attitudes may change:

dealin’ with HIV and stigma, like I say, to me, it’s ignorance … because of when the disease first came out how they had little information about HIV and AIDS. Everybody was so afraid so I would just say ignorance.

Based on the participants’ responses, it appeared that judgment and negative treatment persists in the community, and some individuals in our sample seemed to avoid challenging these notions. For example, one participant recalled being shunned at an event:

fourth of July barbeque, and there was a pool party, and, you know, like I say, everybody knows that I’m positive, but nobody wanted me to get in the pool because they figured if my skin or whatever came in contact with the water, then anybody in the water could get it [laughter]. So, um, to—I—to respect their space, I did get out of the pool.

Despite stigma from the community being a prevalent issue, some of the most painful experiences of stigma were related to interpersonal relationships, particularly from family members and friends. Family members of participants in our sample would often avoid sharing food, drinks, or touching PLWH. For example, “I guess I was at my mom’s house one day, and we was eating, my mom had this big old thing. When I got through eating out the plate, the fork, and the cup, she threw it away.” Many participants also noted stigmatizing behaviors from a range of providers, including doctors, nurses, pharmacists, counselors, and health department personnel during the early years of the HIV epidemic:

well, one of the ladies that’s a part of my group, she needed a procedure done. One of the doctors said that she didn’t wanna do the procedure because of the simple fact she wanted to have a baby and she was afraid that she would get poked with the needle or something.

However, it is important to note that all participants described feeling satisfied with their HIV-related care after finding providers who they trusted. Despite these behaviors from close friends, family, and health care providers, women in our sample would often turn to God for support through prayer, church, or their pastor. Although Christianity played a positive role in coping with HIV, the church itself was also a source of stigma for some women. One participant depicts stigma from a pastor during a church service stating, “he prophesized that three of us in that service had the death angel around us. [Laughter] It was because the HIV … I—I’m supposed to be dead. You know?”Other experiences of stigma included specific behaviors. One commonality most women shared was the negative assumptions that they acquired HIV through risky sexual behaviors. However, most women expressed that HIV was often acquired through partners they trusted, in one instance,

“he didn’t even tell me. We was together five years. Imagine bein’ with somebody and love somebody for five years and they give you this. Why would you do that? He had no answer for that. I forgave him.” Other women also described discriminatory practices and laws in place that affected them far greater than HIV-related stigma, “TV, that’s creatin’ the wrong thing, and these games is violent, vicious, killin’. The cops killin’ our Black boys. It’s a lot of racists out there like I said, and the president ain’t doin’ no good ‘cause he’s racist.”

Psychological Dysfunction

Moreover, HIV-related stigma resulted in negative consequences for the women in our sample. Psychological dysfunction denoted how participants viewed their environment and how it affected their mental health, physical health, and quality of life. Participant perspectives that informed psychological dysfunction included the shared experiences of mental health challenges, dying in silence, and not taking medicine (Table 3). Overall, participants expressed conflicting emotions when they were diagnosed with HIV. Women frequently reported painful negative experiences that led to thoughts of death, consequently affecting their mental health, and as a result they stopped taking their HIV medications. Specifically, HIV felt like a death sentence to some, “That had a effect on me too. ‘Cause that’s when I wound up thinking like, I don’t wanna—even wanna take my medicines. I’m gonna die anyway.” Moreover, women reported mental health challenges, one participant stated, “And I did my drugs in my past, but I got myself back on track. I started drugs when I found out that I was HIV positive, and I lived a very depressin’ life, a very depressin’ life.” Over time, and with education and support, the effects of stigma appeared to have abated in respondents, yet other forms of stigma still remained evident.

Intersectionality

African American women in our sample often associated stigma with other aspects of their identity. Participant perspectives that informed the observer’s perspective of intersectionality included disability and the belief that stigma comes in different shapes and forms (Table 3). Ample evidence emerged that illustrated the negative attributes that participants associated with race, gender, disability, and sexual orientation. Although participants acknowledged the existence of HIV-related stigma, some women reported also having learned of stigma through racism, “Shoot, I’m an African American. I’m always being stigmatized so I’ve been living with stigma all my life.” Other participants expressed that self-preservation can be difficult for African American women in general:

no African American woman can say, “Hey, I take my meds at 6:00 every day.” I just don’t believe that, ‘cause if you got a husband, you got a house, you got a job, you got other obligations, how you remember to take your meds at 6:00? Unless you got somethin’—I even tried to do my phone.

In another example, one participant who identified as a transgender woman expressed feeling more stigma in the gay community, noting, “It’s still gonna be the same. It’s not gonna change. And it’s getting bad in our community. The gay community, you’d think it’s worse than the straight community.” Moreover, most people have expressed that they had a disabling condition affecting their ability to work, participate in activities, and socialize with others:

my second disability is because I was born with asthma. Um, my HIV status, um, kinda played a part in that in my asthma, because my immune system is—is not as strong as it used to be … and it triggers a lot of my health problems, um, that impair me from workin’. Um, I—I tried to go back to work numerous and numerous of times, and my body just wouldn’t let me.

Overcoming Stigma

Although participants described living with HIV as a challenge, their responses revealed that HIV-related stigma did not have an effect on their health and well-being. After living with HIV for many years, women overcame stigma as highlighted in the following participant perspectives: avoidance, disclosure, support systems, belief in God, normalizing HIV, education, and advocacy (Table 3).

The need to avoid certain people, places, and situations was common. Some participants cited that they avoided certain jobs that entailed working with food or exposure to blood. One woman remarked, “And I really—I don’t try to get, like, restaurant jobs. Either, like, around food, I try not to get jobs like that.” Others mentioned rural areas had more HIV-related stigma than cities, as another woman conveyed, “Some people that live in more rural areas than [city] come over to [urban city] to go to the doctor or even for support groups because of the stigma in the more rural areas.” Other avoidant behaviors included hiding medications from family and friends or skipping medical appointments to avoid the cognitive reminder about their HIV status. In contrast, some women in our sample were more comfortable with disclosing their status with others, describing it as an empowering process.

Support systems generally encompassed positive networks such as family, friends, and peer support groups, which were described as important aspects of well-being. Family members such as mothers, sisters, cousins, children, and aunts were examples of individuals who showed empathy and understanding of HIV. In fact, families were the main source of social support among participants in this sample:

my sister under me, she seen it. ‘Cause she’s the first one I told, ‘cause we was like best friends, sisters, everything, we told everything to each other, and we still do that now. It was like okay, I told her. She was like, wow. She said, “Sis, I know about it, I’ve heard about it, but you gonna live a long time.” She always have a positive attitude about everything. You’re gonna live a long time…

Other important relationships included spouses or partners, but enlisting support from these individuals offered mixed responses. Many partners were receptive once the women in this sample disclosed their status; however, others had a difficult time finding partners who they could trust. Even when finding a personal means of support was challenging, women in our sample mobilized their belief in God as a source of hope and purpose:

just don’t give up just yet. I mean God didn’t give up on us. A lot of times I used to hear, “Well, why did God put this on me,” and I said it. Then one day I just woke up ‘cause I heard something in church, and I was like, that’s right, he always told us, he will put no more on us than we can bear.

Finally, other means of resisting stigma included normalization of HIV, education, and advocacy. Normalization of HIV was often associated with wanting to be treated like a human being. Most participants believed people living with cancer received more dignity and respect than PLWH:

you had AIDS. No, cancer. That’s a better word, and the people have to help do that. That person out there runnin’ around on drugs, all that and they had AIDS, but they said they died of cancer. Then, nobody wanna talk about it.

However, to be considered as a human being, many women expressed the need for education in all individuals, particularly on HIV transmission, prevention, and empathy. Further, others commented on the need for PLWH to be the medium for this education and to demonstrate that PLWH can live “normal” lives with effective treatment:

til you read up on it, or sit down and have a conversation with us and let us tell—we might educate you a little bit more than what you know. When we get through talkin’ to you, you might wanna run to the health department and figure out if you got it, instead of you walkin’ around tryin’ to talk about us.

Becoming an advocate for PLWH commonly involved public speaking, leadership roles in government organizations, and education to speak up on behalf of PLWH. One woman responded:

no, not with me. I mean it’s out there. I’m a defender. I hope you jump at me with something stupid when it comes to HIV. I’m ready for ‘em. I’m waiting on the day somebody stand up in front of me and try to discriminate us, ‘cause I’m the face of HIV.

Discussion

The participants in our qualitative study included African American women living with HIV who were asked to reflect on the meaning and perceptions of HIV-related stigma. Our findings revealed that respondents found it difficult to ascribe meaning to stigma but generally referred to the phenomenon through self-conceptualizations and personal experiences. Perceptions of HIV-related stigma had both negative and positive connotations. All the women in our sample mentioned various adaptive and maladaptive methods to overcome HIV-related stigma; however, this relationship was complicated by intersectionality or having multiple stigmatized identities. Consistent with conceptual framework of Turan et al. (2017), participants responded to HIV-related stigma via psychological dysfunction (e.g., depression), particularly when they were initially diagnosed with HIV. Overall, our findings suggest that culturally targeted interventions that aim to reduce HIV-related stigma in African American women could address their unique experiences, particularly among those who are newly diagnosed. These efforts may encompass strategies that garner social support, mental health, resilience, and retention in care and treatment.

The Meaning of HIV-Related Stigma

Defining stigma was difficult for more than half of the women in our study. Respondents identified feeling uncertain about the meaning of stigma, but they could characterize it based on the judgments, stereotypes, and discriminatory acts they experienced. These experiences were often exacerbated when stigma was perpetuated by family and friends and resulted in feeling shame, delaying seeking care, and avoidance (Turan et al., 2017). Community stigma is particularly challenging in the rural South because individuals living in these areas tend to have close-knit social circles (Pellowski, 2013). Therefore, confidentiality and anonymity may be a concern for individuals seeking HIV-related treatment and care. Disclosing HIV status to others required significant consideration for a majority of women in our sample, which suggests that the source of stigma matters. One literature review found that HIV-related stigma perpetuated by family members and male partners was more harmful to the mental and physical health of pregnant women living with HIV than other sources (Hall et al., 2017). This study authenticates the notion that women may not fully use HIV-related services because disclosure increases the risk of community members seeing individuals accessing HIV-specific services and facing rejection by a family member or partner. Thus, there is a dire need to strengthen community-based stigma interventions with a focus on educating common perpetuators of stigma.

Social psychologists conceptualize HIV-related stigma as a stressor that devalues the identity of a person and quality of life of PLWH (Goffman, 1963; Turan et al., 2017). Contrary to this notion, several women in our study attribute stigmatizing behaviors and attitudes as ignorance. Stigma appeared to be less harmful after education, social support, and in a study similar to ours, Buseh and Stevens (2007) found that African American women living with HIV redefined stigma as ignorance, proposing that conceptualizing it in this way helps the women understand why and how stigma exists in their own families and communities. Our findings postulate that African American women have the agency and knowledge to resist HIV-related stigma. It may be important for future studies to consider whether there are differences and similarities to how other racial/ethnic groups transform or overcome HIV-related stigma.

Perceptions of HIV-Related Stigma

Based on our findings, it is plausible that individuals who are newly diagnosed are most vulnerable to worse mental health outcomes due to HIV-related stigma, which may affect one’s ability to remain adherent to medication and seek health care (Turan et al., 2017). However, women in our sample concur that social support from family, friends, and health care providers allow PLWH to feel empowered about their health. Therefore, it may be critical to intervene in African American women who are newly diagnosed through education to prepare them for healthy adjustment. Previous research suggests that psychosocial dysfunction is uniquely predicted by internalized and enacted stigma; however, it may be useful to examine the mediating effects of health care providers and other forms of social support on health outcomes (Hatzenbuehler et al., 2013; Turan et al., 2017). Further, although participants could recount instances where they experienced stigma, they challenged the shame and the discrediting of PLWH through advocacy. Sharing their experiences with PLWH and people not living with HIV to normalize the condition was empowering to participants. These findings concur with other studies that identify the importance of advocacy as a strategy to cope with the diagnosis of HIV (Mahajan et al., 2008). However, few investigators have explored the relationship between community engagement, advocacy, and HIV-related stigma empirically (Duffy, 2005; Parker & Aggleton, 2003).

Intersectional stigma in the context of race, gender, sexual orientation, and disability also emerged in this study. Participants felt that being an African American woman came with several social responsibilities, including presenting an image of strength and positivity for their family, friends, and community. Previous research supports that African American women are acclaimed for their strength in the face of societal and personal challenges (Woods-Giscombe, 2010). Although this has been viewed as a positive character trait that has historically contributed to survival among the African American population, it has also been linked to depression and psychological distress (Buseh & Stevens, 2007). As discrimination and structural inequities persist in the south, cultural factors such as suppressing negative emotions, focusing on the health of others, and making personal health a secondary priority might explain HIV-related health disparities in African American women (e.g., nonadherence to medications, delays in health-seeking behaviors, and lower rates of HIV diagnosis; Woods-Giscombe, 2010). The similarity of these findings from our study and previous research strengthens the argument that African American women may have unique cultural precursors that may counteract or exacerbate HIV-related stigma (Buseh & Stevens, 2007).

Notably, approximately 75% of the women in our sample identified with having a disability (or disabilities). Of those women, many shared that disability complicated physical, mental, and societal domains of their life, which made living with and managing HIV more challenging. HIV-related stigma may influence disability and has been shown to exacerbate depression, decrease energy levels, and decrease cognitive function (Grov et al., 2010; O’Brien et al., 2008). Thus, experiencing multiple forms of stigma (i.e., racism, sexism, and ableism) may have additive effects that can be harmful to health. Drawing from Black feminist theory, the intersectionality framework purports that multiple social identities (e.g., HIV status, disability, race, ethnicity, gender, and sexual orientation) interact simultaneously, resulting in experiences of stigma that cannot be fully understood by focusing on a single level or on the additive sum of individual levels (Fletcher et al., 2016; Turan et al., 2017). Several researchers agree that to appropriately address HIV-related stigma, taking an intersectional approach would be useful to understand the unique structural and interpersonal factors contributing to HIV-related stigma (Fletcher et al., 2016; Hatzenbuehler et al., 2013; Turan et al., 2017).

Finally, the effects of HIV-related stigma appeared to be mitigated by social support and faith. God was a source of support, hope, and purpose in dealing with HIV-related stigma among all the women in our sample. Faith-based interventions are known to be effective in African American communities where the church is generally considered a safe place of worship and testimony (Lancaster et al., 2014). Several studies conducted in the African American community have shown that having a religious background leads to better health outcomes, education, and access to resources (Fletcher et al., 2016; Ransome et al., 2018). However, in this study, faith was also a source of HIV-related stigma when others found out about their HIV status. It is plausible that HIV-related stigma may be a barrier to HIV program implementation in faith-based organizations, so it is important to note the crucial role pastors and faith leaders play in mediating the church environment in a way that promotes empathy and acceptance of PLWH (Coleman et al., 2011; Fletcher et al., 2016).

Strengths and Limitations

This study has several limitations. The findings were limited by a sample that recruited community-dwelling African American women by convenience and snowball sampling methods. Although these methods are primarily used for stigmatized populations, it limits the transferability of our findings. Further, most of the participants have been living with HIV for more than 20 years. This may be a limitation to more fully understanding HIV-related stigma among African American women who are newly diagnosed compared with those who were living with HIV for an extended period. A second limitation was the sample size. Because empirical phenomenology is a relatively new approach, it is unclear whether the sample size was large enough to sufficiently describe the meaning and perceptions of HIV-related stigma. However, we achieved conceptual saturation when no new information emerged in the analysis. Additionally, all the women in this sample were on prescribed antiretroviral medications and, thus, engaged in HIV care. Women who are not engaged in HIV-related care may have different meanings and perceptions of HIV-related stigma. Finally, HIV-related stigma is a sensitive subject; therefore, social desirability bias may influence how the questions were answered. In spite of these limitations, this study was among the first to use an empirical phenomenological approach to explore HIV-related stigma in African American women. Although we were not able to communicate our findings back to the participants, we safeguarded the participant perspectives by reflecting responses back to each participant to ensure that narratives were recorded accurately and correctly during each interview. The research team plans to present these findings back to community members and, together, provide insight on the next steps for this program of research.

Conclusions

The results of this study reveal how HIV-related stigma is conceptualized and perceived by African American women living with HIV in Florida. Participants defined stigma through self-conceptualizations (e.g., ignorance) and personal experiences (e.g., judgments). Perceptions of stigma consisted of a range of manifestations such as internalized, enacted, and anticipated stigma from family, friends, and health care providers. Overall, HIV-related stigma was described as an unpleasant experience that led to a variety of unfavorable outcomes, including poor mental health, death, and despair, and becoming disengaged with HIV-related health during the early years of diagnosis. However, over the years, women in this study developed numerous strategies to combat stigma (e.g., advocacy, disclosure, and education). Elements of stigma reduction described in this study may be an important starting point for designing a targeted intervention for newly diagnosed African American women living with HIV.

Key Considerations.

• HIV-related stigma, racism, gender discrimination, and ableism were interrelated experiences and were associated with participants’ reluctance to disclose HIV status, mental health, substance abuse, and nonadherence to medication.

• An intersectional approach may provide context and build a strong argument for culturally targeted interventions for African American women living with HIV to cope with stigmatized identities.

• Additional research is needed to inform resilience-focused interventions in efforts to build strong social support systems and adaptive coping methods to meet the needs of African American women across the HIV care continuum, particularly among those who are newly diagnosed.