“All They See Is Those Three Letters”: Exploring the Effects of Stigma Among Older Black Women Living with HIV

Abstract

Older Black women (OBW) aged 50 years and older are disproportionately affected by HIV, a condition that remains highly stigmatized. This qualitative descriptive study uses secondary data of previously collected data to explore the effects of HIV-related stigma on a sample of 19 OBW living with HIV. Convenience sampling was used to recruit participants in Florida, USA. In-depth interviews were conducted. Through conventional content analysis, seven themes were constructed: (a) the need for HIV to be a secret, (b) concerns about discrimination, (c) anticipated stigma, (d) behavioral responses to anticipated stigma, (e) ignorance and fear as sources of stigma, (f) emotional responses to experienced stigma, and (g) suggestions for future interventions. HIV-related stigma continues to be a major obstacle that OBW living with HIV must confront. The study’s findings can inform clinical practice and health professional education and encourage greater use of mental health resources among OBW living with HIV.

Introduction

HIV remains a major health concern, especially among Black women (HIV.gov, 2023c; Office of Minority Health, 2023). In 2022, Black women accounted for 54% of new HIV diagnoses among cisgender women in the United States, with heterosexual contact being the most common form of HIV acquisition (HIV.gov, 2023c; Kaiser Family Foundation, 2020). Furthermore, cisgender Black women are disproportionately affected by HIV compared to other racial groups (HIV.gov, 2023a). HIV infection rates among Black women were nearly 10 times as high as the rate among White women and nearly four times as high as the rate among Latinas (HIV.gov, 2023a). Despite the availability and effectiveness of prevention approaches like PrEP and HIV treatment, Black women have the highest rates of HIV-related deaths among women living with HIV in the United States (Kaiser Family Foundation, 2020). Furthermore, Black women are 15.3 times more likely to die from HIV infection than White women, representing a health disparity (Office of Minority Health, 2023). The National HIV/AIDS Strategy for 2022 to 2025 identified Black women as a vulnerable population in which there needs to be prioritization of research and resources to reduce disparities and improve outcomes (The White House, 2021).

Among Black women, older Black women (OBW) aged 50 years and older are also disproportionately affected by HIV. According to the Centers for Disease Control and Prevention (CDC, 2022), the rates of HIV diagnoses among OBW are almost twice as high compared to older women of other racial and ethnic groups. OBW living with HIV face unique transitions, such as changes in their intimate relationships and support network after their HIV diagnosis, adapting to HIV treatment, managing several comorbidities, and adjusting to changes in their physical and mental health (HIV.gov, 2024; Iriarte et al., 2024; James-Borga & Frederickson, 2018; Villegas et al., 2021). Additionally, OBW experience economic hardships that complicate their ability to manage their health, such as increased poverty rates and food insufficiency (Chan et al., 2023). While several medical and pharmaceutical advancements have been made in antiretroviral therapy (ART) that make HIV management easier with daily regiments and even long-acting injections, Black women continue to experience worse HIV-related outcomes (HIV Treatment, 2024; Truong et al., 2015). In 2020 to 2021, OBW were more than two times more likely than white non-Hispanic women to skip medication doses, take fewer medications, and delay or not fill a prescription due to costs (Chan et al., 2023). Among these transitions and challenges, OBW living with HIV may also be subjected to HIV-related stigma, a deeply discrediting attribute that results in exclusion from social acceptance (Fitzpatrick, 2008; Goffman, 1963). HIV-related stigma remains a concern and barrier for women living with HIV that impacts their engagement in the HIV care continuum, a public health model that outlines the steps people living with HIV go through from HIV diagnosis, linkage to care, receipt of HIV medical care, retention in care, and achieving and maintaining viral suppression (HIV.gov, 2022; Sommer & Barroso, 2023). For example, the burdensome emotional impact of stigma may be associated with higher lifetime rates of depression among OBW living with HIV compared to other adults who are not living with HIV (Watkins & Treisman, 2012). Despite cases of HIV being well documented for over 40 years, misconceptions regarding the chronic condition remain, further contributing to stigma towards people living with HIV (Nyblade et al., 2021).

The Health Stigma and Discrimination Framework

The Health Stigma and Discrimination Framework was used to better understand and situate the context of experiences and perceptions of HIV-related stigma among OBW living with HIV. This framework was developed to portray the stigmatization process across the socio-ecological spectrum in the context of health conditions (Stangl et al., 2019). The Health Stigma and Discrimination Framework describes the process of stigma, such as drivers and facilitators of stigma, intersecting stigmas, manifestations of stigma, and outcomes of stigma at various levels such as individual, interpersonal, organizational, and community. As described in the framework, stigma is a multi-faceted phenomenon with varied manifestations such as enacted stigma (e.g., OBW living with HIV excluded from family and friends), anticipated stigma (e.g., OBW living with HIV having thoughts about how a partner might leave them if they learned of their HIV status), and internalized stigma (e.g., OBW living with HIV feeling worthless due to their HIV status) (Stangl et al., 2019).

The Intersection of Race, Gender, Age, and HIV Status

Within the Health Stigma and Discrimination Framework, the application of intersecting stigmas such as race, gender, and age may aid in understanding how multiple forms of stigma and discrimination interact and converge to holistically affect OBW living with HIV (Hannon-Walker & McLuskey, 2024). OBW living in the United States who have HIV are subjected to racism as a psychosocial stressor, which is linked to increased anxiety, depression, and overall deterioration of physical health (Hill-Jarrett & Jones, 2022). Like older women of all races, OBW living with HIV may experience gender-based violence and abuse (Waller et al., 2022). However, the lack of sufficient data suggests older women may be isolated when such violence occurs and unable to report the abuse, thus making it difficult to capture its true magnitude (United Nations, 2022; World Health Organization [WHO], 2024). OBW living with HIV may also endure the consequences of aging in the form of ageism, such as being infantilized, viewed as incompetent, and excluded from important discussions regarding their healthcare and decision-making (Farrell et al., 2022; Gans et al., 2023). OBW already have multiple intersecting marginalized identities, such as their race, gender, and age, that contribute to challenging experiences in maintaining optimal physical and mental health (Farrell et al., 2022; Hannon-Walker & McLuskey, 2024). Living with HIV and its related stigma adds another layer of complexity to the inequalities OBW already face (Rao et al., 2018). While studies have examined stigma and discrimination among Black women living with HIV, the experiences of older Black women may differ due to several intersecting factors, such as age, generational norms, and social expectations regarding sexuality in later life. This suggests that while there is a body of research focused on Black women and HIV-related stigma, the unique experiences of older Black women living with HIV may not be fully captured, highlighting the need for additional research (Moore et al., 2024; Sangaramoorthy et al., 2017). Given the multiple marginalized aspects of their identities—and the harmful effects of HIV-related stigma—it is essential to explore how older Black women living with HIV understand and describe their own experiences. Our study examined how HIV-related stigma affects the quality of life of OBW living with HIV in Florida, and sought to raise awareness of their specific needs. By gaining a better understanding of their experiences, we aim to inform targeted interventions that can enhance their quality of life and bring greater attention to the resources and support they require.

Methods

Design

This secondary qualitative descriptive study is a subsample analysis of a mixed-methods parent study. The parent study (RWLF-ENF-71968) explored the culture of health among minority older women living with HIV, including Black and Hispanic populations. The current research focuses on a specific aspect of the parent study’s findings related to HIV-related stigma. It presents qualitative data from a subsample of 19 older Black women living with HIV who participated in the original research. A qualitative descriptive approach was selected because it allows for clear descriptions of experiences and perceptions (Sandelowski, 2010), particularly in areas where little is known about the topic being investigated (Doyle et al., 2020). For the current study, stigma was chosen as the phenomenon of interest because it was one of the main factors participants identified as impacting their health culture and HIV-related needs.

As researchers, we recognize that our backgrounds, identities, and experiences shape our engagement with this study. Our team includes scholars from different backgrounds (Black, Caucasian and Hispanic), offering both insider and outsider perspectives that enriched our analysis. We acknowledge the power dynamics inherent in research and took steps to minimize bias through reflexive journaling, team discussions, and collaborative coding. Our commitment to ethical, participant-centered research ensured that Black women voices remained central to our findings. By situating ourselves within the research process, we aim to contribute by addressing HIV-related stigma while fostering critical awareness of our roles as scholars.

Sample and Setting

Purposive sampling was used to recruit participants from a clinic providing comprehensive healthcare services in Florida, USA. The recruitment was conducted face-to-face by the clinical research team and by nurses and physicians who referred potential participants to the study. In addition, flyers were placed in the care centers and the community.

Inclusion criteria for this qualitative study were (a) self-identify as a Black woman, (b) be aged 50 years or older, (c) speak and read in English and be able to provide consent, and (d) self-report as HIV positive. We selected 50 years and older as the age selection criteria because over half of the population living with HIV in the US are now 50 years and older, and this population is expected to increase (HIV.gov, 2024). The sample recruited of 19 OBW living with HIV allowed us to capture a reasonable range of experiences that addressed the aims of our study.

Data Collection

Interviews were performed in private offices where the participants received HIV-related care. Institutional Review Board (IRB) approval for conducting the initial study with minority older women living with HIV was obtained from the University of Miami and the Jackson Health System Office of Research [IRB #20161058]. All participants signed a written consent and volunteered to participate in the study. In addition, The University of North Carolina at Chapel Hill IRB approved this qualitative descriptive study that uses the secondary findings from the Minority Older Women with HIV study [IRB #341882].

Semi-structured interviews with 19 OBW living with HIV were conducted in English according to the participants’ preference. The research team members received a 2-day training course that included qualitative interviews. The training was led by the 3 senior researchers who had prior training and experience conducting qualitative interviews and working with minority groups in the U.S., and focused on reviewing interview protocols to maintain consistency. The interviews were conducted by three researchers and one doctoral student with prior experience conducting qualitative interviews. The research team developed the interview questions based on the available literature and expertise in minority older women and HIV (Durvasula, 2014; Holmes & Shea, 1998; Psaros et al., 2012; Smith & Larson, 2015; Vincent et al., 2017; Warren-Jeanpiere et al., 2014). The interview questions were piloted with three volunteer women who satisfied the selection criteria but who were not part of the study. These women verbalized understanding of all the questions and found the semi-structured interview guide easy to follow. Questions were general about their life living with HIV and were open-ended to minimize the risk of biasing participants’ responses and to allow for novel themes to be developed. A semi-structured interview guide with pre-scripted and probing follow-up questions was used to guide the interviews. Table 1 presents three examples of the interview questions and probes.

Table 1.

Examples of Interview Questions.

Question	Probe
1. How would you describe your life after you were diagnosed with HIV?	Tell me about your feelings after the diagnosis; describe your emotions after the diagnosis.
2. What have been the most challenging aspects of your life since your diagnosis?	Tell me more about your family life after the diagnosis.
3. Would you describe your daily activities after your HIV diagnosis?	Describe any changes that took place in your day-to-day activities from before to after the diagnosis, and tell me more about them.

The in-depth semi-structured interviews lasted 45 to 60 min and were audio-recorded. Active listening and sensitivity to the verbal and nonverbal responses of the study participants were important aspects the interviewers considered. Interviewers responded neutrally to the participants throughout the interviews without influencing their answers, as Mack et al. (2005) suggested. Participants received 30 dollars of compensation for their time in the interview. Participant numbers were assigned during the quantitative phase of the parent study. Each participant was assigned a unique identification number (ranging from 1 to 150). The final sample consisted of 138 women in the quantitative study of the parent study. Of these, 19 Black women agreed to participate in the qualitative phase of the current study.

Data Analysis

All audio recordings were transcribed verbatim. Two members of the research team (NV, RC) reviewed the transcriptions to verify no discrepancies. Private information mentioned by participants in the transcripts (e.g., names or locations) were deleted from the transcripts. Two digital recorders were used to facilitate the accuracy of the audio. Research files were stored in a locked area, and digital files were saved in password-protected computers.

Conventional content analysis was used to identify and define the major themes that appeared from the interviews (Hsieh & Shannon, 2005). This type of analysis was appropriate because in conventional content analysis, coding categories are derived directly from the text data using an inductive method to identify recurring content (Hsieh & Shannon, 2005). Data analysis was conducted manually, and the themes and codes were built by analyzing the data line by line. Similar codes were grouped into clusters to create themes (Sandelowski, 2000). To identify codes and to create the themes, the interview transcripts were read independently by two research team members (LM, NV) multiple times to obtain the meaning, context, and examples of the stigma these women experience. A codebook was developed and reviewed among two research team members (LM, NV) to ensure rigor throughout this iterative process. After the independent review of each research team member, they met to discuss similarities and differences found in the themes. The analysis results were compared, and 90% agreement on the codification was obtained. The process ensured the rigor and quality of the method of data analysis and resulted in the construction of the final themes presented in this study.

Trustworthiness was enhanced by using data collection and sampling methods appropriate to the research questions. To minimize bias in this qualitative study, we engaged in reflexivity—critically examining our assumptions—and explicitly acknowledged our positionality in relation to the participants and topic. The study’s trustworthiness was also improved by immersing in the data before analysis. Rigor was also augmented by the rich and frequent discussions among the research team to ensure correct and consistent interpretation of the results.

Results

Participant Demographic Characteristics

Table 2 provides information about the sociodemographic characteristics of the sample.

Table 2.

Demographic Characteristics (n = 19).

Demographic characteristics	M	SD	n
Age (years)	56	6.94
Education (years)	12	1.56
Years of HIV diagnosis	20	6.94
Monthly income ($)	830	405.02
Monthly per capita income	694	396.69
Religion
Baptist			13
Piscopalian			1
Evangelist/Pentecostal			2
Jewish			1
Methodist			1
None			1
Relationship status
Single			6
Divorced			2
In a relationship, not legally married			9
Married			2
Living arrangement
Living with a partner (significant other)			6
Not living with the partner (significant other)			13

Qualitative Descriptive Analysis

A total of seven themes related to HIV stigma towards OBW living with HIV were constructed from the in-depth interviews: (a) the need for HIV to be a secret, (b) concerns about discrimination, (c) anticipated stigma, (d) behavioral responses to anticipated stigma, (e) ignorance and fear as sources of stigma, (f) emotional responses to experienced stigma, and (g) suggestions for future interventions. A detailed description of each theme is presented below in the following paragraphs. Table 4 (in Supplemental Materials) presents additional exemplar quotes.

The Need for HIV to Be a Secret

Several OBW living with HIV decided to keep their diagnosis a secret because of previous negative experiences after disclosing, while others were fearful of how an unintentional disclosure could impact their lives. Some maintained silence due to fear of rejection, while others were trying to shield their own children living with HIV from harmful comments and discrimination. One woman shared that she felt compelled to hide her HIV status instead of telling her family about it:

Some of the doctors call, I have to . . . go outside, or something to talk to them because my daughters or mom [is] around. I don’t want to mess around and say the wrong thing with the HIV . . . because, I don’t want them to know it. I’m thinking now I might have to just die with it [HIV]. And they’ll find out at the end . . . I don’t want to tell no one. (Participant 45)

Another woman described her age as a reason to maintain her HIV status a secret: “And when you’re at that age, that’s [HIV status] the last thing that you want people to know. And when people our age like that, we bond. . ..and it’s a situation like that, we tend to be very secretive.” (Participant 90)

Concerns About Discrimination

Several women brought up instances of discrimination as a result of living with HIV. Participants described experiencing discrimination in multiple spheres of their lives from friends, family, romantic partners, and even within the healthcare system. Women also endured avoidance from others, verbal violence, and abandonment. These experiences had a lasting impact on the women and influenced how they decided to approach the management of their HIV status. One woman said:

One of my family members . . . I went to her house for the Fourth of July for a picnic. We went to the house, and I asked for a glass of water . . . and she went in the kitchen and gave me a glass of water. And her sister told her I was HIV positive, and I went back in the house to use the bathroom, and the glass that I was using was in the garbage. So, what I did, I just got my pocketbook and I left. And she asked me why I left. And I told her, I said, ‘You threw that glass in the garbage, so you felt like there was something wrong with me . . . so, I felt uncomfortable, and I left’. (Participant 90)

Anticipated Stigma

Although some women did not personally experience stigma and discrimination due to their positive HIV status, they anticipated it. There was a consensus amongst the women that they would face stigmatization if they were to disclose their HIV status. The participants’ perceptions of anticipated stigma influenced how they navigated interpersonal relationships. Some women expected to be judged and rejected by those in their communities and neighborhoods. Others worried that family members and romantic partners would no longer accept them. One woman anticipated her family would reject her if she disclosed her positive HIV status, “[I did not disclose] because I didn’t think they would accept me [with HIV]. I think they were [going to] probably kick me out of the house” (Participant 81). Women feared their partners would no longer want to continue the relationship after disclosing their status. One woman shared her fears of rejection in a romantic relationship:

If I get in a relationship with somebody . . . I wouldn’t feel free or comfortable sharing [my HIV status] because . . . the rejection. That’s the main thing . . . the feelings of being rejected . . . The feeling of being betrayed . . . the feeling of, ‘You’re not gonna want to be with [me]–’ . . . That’s their rejection, you know? The feelings that you’re gonna be angry with me, saying that I’m trying to give you [HIV], but I’m trying to be honest. (Participant 148)

Behavioral Responses to Anticipated Stigma

As mentioned in the previous theme, anticipated stigma was a major concern for OBW living with HIV. This often resulted in anxiety and uncertainty when deciding if and how to disclose their HIV status to family, peers, and community members. However, several women felt compelled to change their everyday behaviors to protect themselves from further stigma and discrimination. Some women adjusted their routines by seeking healthcare in different towns to avoid running into any family or friends. Several women became withdrawn and chose to self-isolate from their social circles. Some women did this to shield themselves from the stigma they anticipated experiencing from others. One woman described how she became less active in her social life:

I’m not as sociable as I used to be. So, I know that I have it [HIV]. When I go to my groups [HIV support groups], it’s like I’m excited to be around people so I could talk and not worry about what everybody’s thinking [because] we’re all in the same boat. But, I don’t know. I feel like I have to hold back when I [am] around other people. (Participant 29)

One woman living in a group home decided only to use her own kitchen utensils in case her housemates learned she was living with HIV and stigmatized her for it. She explained:

We (the participant and her friend at the group home who is also living with HIV) feel that if we tell someone about me in the house where we at, they’ll feel like we [are] nasty and dirty, and they [would] feel like that if they sit on the stool, or they eat, or use a fork or spoon behind us, that they would get it . . . So, what I do, in the house, I got my own cup. I got my own coffee cup. I got my own fork, spoon, and knife. (Participant 103)

Ignorance and Fear as Sources of Stigma

Upon reflecting on the HIV-related stigma they experienced, several women believed that lack of proper education regarding HIV was a main contributor. Most women suspected that people who stigmatize them were never exposed to accurate information about HIV. Many women believed the lack of education led to fear, which ultimately resulted in stigma towards people with HIV. Some women felt as though they could not blame people for their stigmatizing behaviors because they did not know any better. One woman described how she could not get mad at her mother for buying paper utensils because she had very limited knowledge about HIV and its transmission, “I couldn’t get mad at her because I knew she wasn’t educated about it” (Participant 5).

Most of the women also noted a willful ignorance among people in their communities, meaning they did not care to properly educate themselves about HIV. One woman explained how she feels people only see those three letters—HIV:

Some people’s mindset are still back in the ‘80s, and some people don’t want to be educated because all they know—all they see is those three letters [HIV], or they see those four letters [AIDS], and that’s all they need to know. (Participant 148)

Emotional Response to Experienced Stigma

For many women, speaking of their stigmatizing experiences often triggered negative emotions. Several women described feeling worthless after experiencing stigma. Others felt damaged, hurt, and uncomfortable around people they considered family and friends. Some even felt as though their physical symptoms were stress-related due to HIV-related stigma. Overall, participants described experiencing stigma as stressful and emotionally taxing. One woman shared how her mental health declined after experiencing stigma and betrayal from a close friend.

When I first found out, I had my best friend, so I thought, and I shared [my HIV status] with her. And you know, when people get mad at you, people do mean things? . . . That was something she did. [My best friend said], ‘Oh, you got HIV?’ And I was like, ‘Well, I never thought that you would do that to me,’ because . . . if you share this secret with me, even if we don’t talk anymore, that was a secret that I would carry with me regardless if we [will] never be friends, I would not betray you because that’s something I know would hurt you. It could damage you . . . If I didn’t have enough strength, I could have contemplated suicide because of that. (Participant 148)

Another woman explained how worthless she felt when her HIV case manager refused to let her touch the office items to complete paperwork:

You know the [clipboard]? I asked her (the case manager) can I get it off her desk before I took it off. She said, ‘Oh. You don’t need to hold it. You can just . . . turn the papers round right there . . . I [said] ‘No, I can’t write like that, crooked . . . can I put it in my lap?’ [She said], ‘You don’t have to put it in your lap’ . . . That [makes] you feel down . . . It makes you feel down, embarrassing, like you [are] not worth [anything] and you just [are] nothing. (Participant 74)

Suggestions for Future Interventions

At the end of the interview, each woman described services they thought would benefit people living with HIV. A few women mentioned increased public awareness about HIV to reduce stigma and offer services for individual support. Most women highlighted the need for support groups, which would serve as a confidential space for these women to share concerns, provide community to one another, and receive guidance on how to manage HIV as they age. One woman described the need for support groups for older women:

Having a support group for older women, 50+, and not having it where it’s really advertised all over, but when the case managers get women that are 50+ or 45+ plus, you understand what I’m saying, they give them the option to come to this support group and the support group is confidential. (Participant 90)

Similarly, another woman how support groups made her feel less alone, highlighting the importance of such support groups:

I was going to group, and I started meeting and talking to people that was HIV positive and was going through the same thing that I was going through, and I started realizing I’m not alone, and I have other people [who are] fighting this disease. (Participant 77)

One participant wanted to see more recreational opportunities among other OBW living with HIV, “It’d be good to have some kind of recreation—you can do something . . . Just passing out papers or doing something” (Participant 45).

Discussion

The purpose of this article was to explore experiences of stigma among OBW living with HIV in Florida.

Seven distinct themes related to HIV stigma were constructed from the interviews, revealing that stigma is still an issue among OBW living with HIV. This is of concern because HIV-related stigma continues to negatively impact HIV prevention and treatment, often dissuading at-risk populations to seek appropriate care (HIV.gov, 2023b; The White House, 2021). The findings of this study may inform the development of effective interventions to address HIV-related stigma within this vulnerable population. Our results indicate that the majority of OBW living with HIV experienced HIV-related discrimination, and this remains a major concern in their daily lives, even decades after the first cases of HIV appeared in the U.S. This is congruent with other studies that report HIV stigma and discrimination remain obstacles for OBW living with HIV, and often occur in intimate relationships, such as familial and romantic (Moore et al., 2024; Sangaramoorthy et al., 2017). The results are also consistent with the findings from Darlington and Hutson’s (2017) systematic review, which reported friends and family as common perpetrators of HIV stigma towards Black women living with HIV in the southern region of the U.S. Experiencing HIV-related stigma at the interpersonal level with friends, family, and romantic partners is particularly painful for women living with HIV to cope with (Herron et al., 2022; Sommer & Barroso, 2023). Unfortunately, the experiences of women in our study are similar and revealed that it was common for participants to be physically and emotionally abandoned by their loved ones after disclosing their positive HIV status.

Another common phenomenon in our study was anticipated stigma. Several women expected to be stigmatized if they were to disclose their HIV status to others. While many women accepted that stigmatization would inevitably occur, they also made attempts to protect themselves, like being extremely cautious with whom they disclosed their status. Other studies have also noted anticipated stigma as a mental burden for OBW living with HIV, often causing these women to be hypervigilant with whom they share their status, as well as the timing of their medications and appointments to prevent accidental disclosure (James-Borga & Frederickson, 2018; Koch et al., 2022; Moore et al., 2024). Travaglini et al. (2018) found high levels of anticipated stigma in a sample of Black women living with HIV (n = 220) who were receiving mental health treatment through an intensive community support program. In the same study, higher levels of anticipated stigma were correlated with higher levels of lifetime trauma, dysfunctional coping strategies, and fewer years living with HIV (Travaglini et al., 2018). Anticipated stigma may also impact engagement in HIV care. Through a serial mediation analysis among a mixed-age sample of Black women living with HIV (n = 1,060), Yigit et al. (2025) found that women who experienced HIV-related stigma had higher levels of anticipated stigma, which was also associated with mistrust in HIV care providers and resulted in lower adherence to antiretroviral therapy. Additional research is needed to better understand the mechanisms of anticipated stigma among OBW living with HIV.

Another major finding is the participants’ emotional response to HIV-related stigma. We found that several women felt stress and emotional pain due to the trauma of being stigmatized. Some women felt worthless and as though they did not matter. Among a similar population of OBW living with HIV, James-Borga and Frederickson (2018) also found anger, loneliness, and feelings of isolation to be common emotions after experiencing HIV-related stigma. In a study conducted by Grodensky et al. (2015), participants described feeling shameful to be living with HIV, especially at their age, resulting in social withdrawal from embarrassment. Additionally, a qualitative meta-synthesis of 43 papers about HIV-related stigma among women aged 18 to 76 years living with HIV in the U.S. revealed that HIV-related stigma resulted in shame, self-loathing, anxiety, and negative self-perceptions (Sommer & Barroso, 2023). Stigma remains a common source of unfavorable emotions for minority women living with HIV, including OBW. Despite these challenges, after living with HIV for several decades, many of our participants and other OBW living with HIV cultivated ways to remain grateful and live fulfilling lives. In their study on identifying social support needs among African American women aging with HIV, Warren-Jeanpiere et al. (2017) found that many participants spent decades developing self-love to accept their HIV status, making them feel as though their lives were truly beginning in middle and older age. Similarly, other studies suggest that midlife and older Black women are more resilient, better able to foster community support, and equipped with coping mechanisms to protect themselves from experiencing such negative emotions associated with HIV-related stigma (Sangaramoorthy et al., 2017; Travaglini et al., 2018). Previous research among Black women living with HIV has highlighted that building resilience is a process influenced by social support, self-acceptance, and self-compassion (Koch et al., 2022). Further research is needed to understand resilience, coping mechanisms against HIV-related stigma, and the factors that influence their development specifically among OBW living with HIV.

Lastly, mental health challenges were frequent among our participants. For some women, experiencing HIV-related stigma was their main stressor. For others, no longer having access to their usual support system due to experienced and anticipated stigma was especially distressing. While our study did not measure mental health status, it is evident from the participants’ interview responses that they experienced mental health challenges due to HIV-related stigma. This finding is consistent with the scoping review of Herron et al. (2022) who found that among women living with HIV, depression, anxiety, and emotional distress were consistent and universal consequences of HIV-related stigma. Further, these challenges may be highlighted among women with intersecting stigmas, such as Black women living with HIV who also experienced racism (Herron et al., 2022; Waldron et al., 2021).

Nursing Implications

Based on the results of our study, HIV-related stigma remains an important issue to be addressed among OBW living with HIV. This study offers important implications for the clinical practice and education of nurses and healthcare professionals, as well as highlighting the need for mental health services to be integrated into standard HIV care.

Clinical Practice and Research

Results from this study can be used to improve clinical practice among nurses and healthcare professionals. As discussed, OBW living with HIV reported negative experiences with their healthcare providers, some of whom actively discriminated against them. There is an evident need for healthcare workers to receive more in-depth training and education on how to care for patients who are living with HIV properly. Healthcare workers may start by reflecting on and addressing their own implicit biases towards people living with HIV, as this can influence patient-provider relationships, quality of care, empathy, and patient outcomes. Healthcare workers should also adopt person-first language and refer to their patients as “patients living with HIV” rather than “HIV patients” to maintain the dignity of OBW living with HIV and not reduce them to their diagnosis. Furthermore, this study can guide healthcare workers in appropriate behaviors when caring for patients living with HIV, such as avoiding the use of unnecessary personal protective equipment and allowing patients to touch commonly shared items, like pens and clipboards, without fear of transmission. At a structural level, healthcare facilities can host educational workshops for staff to dispel myths about people living with HIV. Such workshops can also help healthcare workers better understand their responsibility to provide non-stigmatizing care to ensure people living with HIV remain engaged in the HIV care continuum to achieve and maintain viral suppression.

Education

Some participants concluded that the public perception of HIV has not changed much since the 1980s, a time when information about the virus was not readily available to the public, and HIV was considered a death sentence. The findings from this study can be used to guide educational interventions for nurses and other healthcare providers to increase awareness about HIV and reduce HIV-related stigma. Due to their training and the nature of their job, nurses are especially adept in educating diverse populations, a valuable skill that can be applied to educating the public about HIV and HIV-related stigma. Many of our participants described experiencing HIV-related stigma from family and friends, some of whom were not knowledgeable about HIV transmission or the impact of stigmatizing behaviors, indicating the need for educational campaigns that can also address HIV-related stigma. Families, friends, and community members of OBW living with HIV should be taught about HIV transmission, and that one cannot acquire HIV through casual contact of commonly shared items, such as glasses or silverware. Nurses may also lead these educational efforts to teach family, friends, and community members about HIV-related stigma and the harms it causes to OBW living with HIV.

Mental Health Resources

Additionally, this research highlights a need to increase mental health resources specific to OBW living with HIV. Several women experienced depression, anxiety, and self-isolation due to HIV-related stigma. One action nurses can do to address this is to adequately assess for signs and symptoms of depression, anxiety, and other mental health conditions among OBW living with HIV. Further, in combination with learning how to manage the physical symptoms of HIV and aging, OBW living with HIV also need support on how to address their mental and emotional needs that may arise from experiencing HIV-related stigma. Although it is impossible to protect these women from ever experiencing HIV-related stigma, they can be equipped with tools and resources to cope with HIV-related stigma, should it occur. Some participants described the need for individual support to improve their coping with HIV-related stigma. Nurses can support this by advocating for other professionals, such as therapists, psychiatrists, and social workers to be integrated as part of these womens routine care. Many participants also identified the need for support groups among other OBW living with HIV to form community and uplift one another as they manage aging while living with HIV. Nurses can create support groups for these women within HIV clinics as a safe space to attend to both their physical and mental health needs. Because most of our participants self-identified as religious, future interventions may also benefit from collaboration with religious communities for additional support systems for these women. Table 3 summarizes the nursing implications for clinical practice, education, and mental health support for OBW living with HIV.

Table 3.

Nursing Implications to Support OBW Living with HIV.

Clinical practice	Education	Mental health
• Avoid unnecessary PPE • Understand verbal and nonverbal stigmatizing behaviors • Reflect on implicit biases towards people living with HIV and understand how it affects quality of care • Use people first language	• Provide public with updated information about HIV • Educate loved ones of OBW living with HIV about HIV transmission • Teach loved ones about the harms and consequences of HIV-related stigma on OBW living with HIV	• Assess for anxiety, depression, and other mental health conditions • Advocate for integration of other professions into routine care • Create support groups in HIV clinics

Limitations

Our study recruited OBW living with HIV who resided in one county in Florida. The findings of this study may not be generalizable to other older Black women living with HIV in other parts of Florida or elsewhere. Furthermore, women were recruited at a location where they already receive frequent care to manage their HIV. Since participants were from a clinic, they may be more engaged in care when compared to women who do not frequently visit a clinic.

Conclusion

This research contributes to the scientific literature by providing a nuanced understanding of HIV-related stigma among older OBW living with HIV. By employing qualitative descriptive methods and analyzing in-depth interviews from a targeted subsample, the research offers rich insights into the multifaceted nature of stigma these women face, including their perceptions, emotional responses, and behavioral changes in response to stigma. The identification of seven key themes highlights the complexity of HIV stigma, encompassing secrecy, discrimination, and suggestions for future interventions. These findings illuminate the unique challenges OBW living with HIV face and emphasize the critical need for tailored clinical practices and educational resources for healthcare professionals. Furthermore, this study lays a foundation for future research to develop effective strategies to combat stigma and improve mental health support for this vulnerable population, reinforcing its significance in the broader discourse on public health and social justice.

Author Biographies

Laika Maganga, RN, BSN is a PhD student at the University of North Carolina at Chapel Hill School of Nursing.

Natalia Villegas, PhD, MSN, RN, IBCLC, FAAN, is an Associate Professor at the University of North Carolina at Chapel Hill School of Nursing.

Lucero Rocha, RN, BSN is a PhD student at the University of North Carolina at Chapel Hill School of Nursing.

Rosina Cianelli, PhD, MPH, RN, IBCLC, FAAN, is a Professor at the University of Miami School of Nursing and Health Studies and Pontificia Universidad Catolica de Chile, Escuela de Enfermeeria.