Understanding Types of Stigma Experienced in Black Women Living With HIV in Baltimore, Maryland: A Mixed Methods Study

Abstract

ABSTRACT

Aim

To understand how Black or African American women living with HIV (WLH) experience different types of stigma in their daily lives.

Design

Secondary analysis of quantitative and qualitative data from a recent clinical trial in Baltimore, Maryland.

Methods

Quantitative data were collected in the baseline survey, and qualitative data were gathered during 6‐month follow‐up focus group and individual interviews. First, we conducted an exploratory factor analysis with principal axis factoring to identify the underlying factor structure of the HIV Stigma Scale. Next, we analysed the interviews with thematic analysis to understand women's experience with different stigma types.

Results

Exploratory factor analysis revealed the HIV Stigma Scale was a one‐factor scale that measured internalised stigma. However, qualitative interviews revealed that four different types of stigma were present in the everyday lives of WLH. These included the following: vicarious, enacted, internalised and perceived stigma. A current HIV stigma scale may not fully capture the stigma experiences salient to Black WLH. There is a need for internally valid quantitative measures that can adequately capture HIV stigma as experienced by Black WLH.

Patient or Public Contribution

Black WLH agreed to participate in the study, completed the HIV stigma scale and shared their experiences with us.

Introduction

Black or African American women are disproportionately affected by HIV—they represent 13% of the United States population of females but nearly 60% of incident HIV diagnoses among females (Centers for Disease Control and Prevention 2023). Stigma is a social process by which groups of individuals are devalued and deemed socially undesirable (Goffman 1963). HIV-related stigma has negative effects on the health behaviours and health outcomes of Black women living with HIV (WLH). For example, stigma has been identified as a main barrier to WLH receiving regular Pap tests (Chidyaonga-Maseko, Chirwa, and Muula 2015), seeking medical care in general (Kemp et al. 2019) and engaging in HIV treatment (Ojukwu et al. 2022).

The HIV Stigma Framework (Earnshaw and Chaudoir 2009) conceptualises stigma experienced by people with HIV in three different types: enacted stigma, anticipated stigma and internalised stigma. According to Earnshaw and Chaudoir (2009), enacted stigma occurs when people commit acts of discrimination against other people living with HIV, whereas anticipated stigma is the case where people living with HIV expects that they will experience discrimination and prejudice from others. Finally, internalised stigma is defined as accepting and applying to oneself the negative societal characterizations and perceptions of people living with HIV. Relevant literature has identified additional types of stigma as salient to people living with HIV: vicarious stigma and perceived stigma. Vicarious stigma is stigma that occurs when someone living with HIV becomes the subject of stories and discussion because of their HIV status (Lekas, Siegel, and Leider 2011). Finally, perceived stigma is a person's fear of experiencing negative attitudes and discrimination from society because of living with HIV (Li et al. 2016).

Li et al. (2016) conducted a systematic review to investigate how different stigma types impact peoples' decisions to share their HIV status with their sex partners and found that perceived stigma may not have an effect on sharing, whereas enacted and internalised stigma did have more consistent effects. These findings suggest that certain types of stigma may be more salient to the experiences of people living with HIV. However, less is known about different types of stigma that are experienced by Black WLH. A recent clinical trial of WLH—the CHECC-uP (Community-based Health literacy-focused intervention for Cancer Control) study—offers a unique opportunity to identify and better understand different types of stigma experienced by Black WLH.

Background

Stigma as an overall construct has been studied among people living with HIV, with evidence suggesting that different types of stigma may affect people in different ways. For example, Kinsler et al. (2007) found that people living with HIV, who self-reported experiencing perceived stigma from healthcare workers regarding their HIV status, had 3.3 lower odds of accessing healthcare services. Fletcher et al. (2016) examined how Black WLH in the southern United States experienced enacted, internalised and perceived stigma at institutional, community and interpersonal levels. They found that WLH experienced various types of stigma in their daily lives, and stigma negatively influenced women's decision-making, health and relationships (Fletcher et al. 2016).

Prior research indicates that stigma may have multiple effects on WLH. More research is needed to understand Black women's experiences of stigma. In order to design interventions that can address the insidious effects of stigma on WLH, it is important to distinguish the different types of stigma. Nurses are often on the front line of HIV and therefore need to be well-informed about the different types of stigma that may be experienced by Black WLH and how they may impact their health-seeking behaviours and quality of life (Sangaramoorthy, Jamison, and Dyer 2017).

Using a secondary analysis of quantitative and qualitative data obtained from the CHECC-uP trial, the purpose of the current study was to identify underlying types of stigma among Black WLH. This knowledge will help elucidate potential intervention targets by understanding the mechanisms by which stigma may influence health behaviours among Black WLH.

The Study

Aim

The aim of this study is to understand underlying types of stigma among Black WLH and how different types of stigma affected their experience with health care.

Design

This study was a secondary analysis of baseline quantitative and post-intervention, 6-month qualitative interview data from the CHECC-uP trial (Trial registration: NCT03033888). The CHECC-uP trial was a randomised controlled trial designed to test the effects of a health literacy–focused cervical cancer intervention on Pap test screening and other psychosocial outcomes among WLH. Details of the study intervention and outcomes have been published elsewhere (Han et al. 2023). Briefly, the CHECC-uP intervention consisted of (1) a one-time health literacy-focused education session to learn and practice medical terminology and scenes in the context of Pap test screening; and (2) monthly phone follow-ups with health navigation assistance tailored to WLHs' needs for 6 months. Women in the control group received an information brochure from the American Cancer Society describing the importance of Pap test screening among WLH (Han et al. 2023).

Participants and Data Collection

All study procedures were approved by the anonymized Institutional Review Board. Women were recruited to the CHECC-uP trial in Baltimore City through local health fairs or partnerships with HIV clinics and community-based organisations serving men and WLH or at high risk for HIV (Mendez et al. 2021). Women were included if they: (a) Were 18+ years old, (b) had HIV infection, (c) could read and write English and (d) were willing to provide written consent for a medical record release of Pap tests. Women who had a hysterectomy or a pap test within the last 12 months were excluded from the study.

A total of 123 eligible participants were enrolled in the CHECC-uP study and completed the study assessment at baseline. Trained study staff completed the baseline intake, three-, and six-month follow-up data collection interviews. Upon completion of the study procedures at 6 months, intervention women were invited to participate in a semi-structured, post-intervention interview. The primary goal of the post-intervention interviews was to understand women's experience with the CHECC-uP intervention and to address barriers and facilitators of WLH's participation in a health promotion programme, such as CHECC-uP. Based on prior research that stigma may be one of the barriers to Pap test screening (Jin et al. 2020), stigma was included as part of the interview questions. Trained study staff conducted post-intervention in-person interviews in a private, confidential setting (e.g., a private room in a nursing clinic or community-based organisation). A total of 16 women completed the post-intervention interview and their interview data were included in the analysis.

We captured WLH's experiences of stigma in two ways—through the baseline study survey and post-intervention interviews. The baseline survey included a validated HIV stigma scale, which provided quantitative data for the purpose of this analysis. Specifically, stigma-related to HIV was measured by the HIV Stigma Scale developed by Sowell et al. (1997). The Scale includes 13 items using a 4-point response scale to determine how often participants have thoughts and feelings that they are stigmatised or put in jeopardy because of HIV. Example questions are as follows: ‘I felt blamed by others for my illness’ and ‘I feared that people would hurt my family if they learned about my illness’. The 13 items are scored from 1 (not at all) to 4 (often), ranging for a total score of 13 to 52. High scores represent higher stigma. Using a sample of older adults (50+ years) who were at risk of or living with HIV infection, a study found that the HIV Stigma Scale had a 3-factor structure (distancing, blaming and discrimination), as well as good reliability and validity (Emlet 2006). The Scale yielded a Cronbach's alpha coefficient of 0.94 in the study sample.

Post-intervention interviews used vignettes. Due to the distressing and sensitive nature of stigma, we deemed it is best to use vignettes during interviews to generate conversation about stigma that WLH had experienced, rather than ask open-ended questions. Vignettes are short stories given to participants to elicit a response, either from their own perspective or the perspective of a character in a story (Murphy et al. 2021). Our research team created vignettes to generate situations that would be realistic and relevant to capture different types of stigma experienced by WLH. Drafts of the vignettes were written, discussed in team meetings, and revised until consensus was reached among the study team that they could adequately capture stigma in a sensitive manner. During the post-intervention interview, women were asked to envision themselves as the individuals in the vignettes and respond to each situation accordingly. Some of the questions following the vignette were as follows: ‘What do you think about this scenario? If you were Edna [a woman featured in the vignette], how would you feel? How would you behave? How has such an experience through your friend/family influenced your HIV management, if any?’ All post-intervention interviews were audio recorded and transcribed verbatim by the study team member who conducted the interview. Individual interviews lasted about 30–60 min. All participants provided written informed consent to participate. WLH in the study received $20 for completing the study survey at baseline. Those who participated in the post-intervention interview received additional $30 for their time.

Data Analysis

We used descriptive statistics, such as means, standard deviations, frequencies and percentages to summarise participant characteristics. In order to identify underlying types of stigma in the study sample, we performed an exploratory factor analysis with principal axis factoring (Costello and Osborne 2005) on the HIV Stigma Scale. Factors with eigenvalues > 1 were considered adequate and used for interpretation in identifying stigma types. All factor solutions produced models in which one factor was retained, hence it was not necessary to rotate the data. We used theoretical thematic analysis (Braun and Clarke 2006) to analyse post-intervention qualitative data. Specifically, all qualitative interviews were coded separately by at least two members of the research team, who each identified initial codes and generated initial themes relevant to types of stigma across the data. Any discrepancies in the initial codes and themes were resolved through consensus by discussing and referring to the data until 100% agreement was achieved by at least two study members. Finally, the research team met to review and refine the important themes emerging from the dataset about stigma and to select quotes that supported the findings. For the purpose of the current study, we categorised interview participants into two different groups based on their stigma scale scores: low (26 or less) and high (27 or more). We used these categories to present qualitative analysis findings.

Results

Sample Characteristics

Table 1 presents a summary of the survey sample characteristics (N = 123). WLH were mostly middle-aged (mean = 51.5 years), not married (77%) and unemployed or disabled (80%) at baseline. Less than one in 10 women (9.8%) reported being employed full-or part-time at the time of the study. About 71% of women completed high school or a lower level of education, with only 9% reporting some college. A majority (98%) of women reported having a Pap smear at least once in their lifetime. The survey sample had a mean score of 22 on the HIV stigma scale, which indicates overall low levels of stigma. Women in the post-intervention interview subsample (n = 16) shared similar characteristics as the survey sample, with most being middle-aged (mean = 51.7 years), not currently married (63%), disabled (69%), and unemployed (81%). About seven in 10 women (69%) completed high school or lower. Their HIV stigma mean score was 20. This subsample of women was not statistically different in terms of sociodemographic characteristics than the total sample of women who completed a baseline survey.

TABLE 1 Sample characteristics.

Characteristics	Survey sample (N = 123), n (%)	Interview subsample (n = 16), n (%)
Age (range = 22–69), years
< 50	32 (26.0)	2 (12.5)
50+	72 (58.5)	9 (56.3)
Missing	19 (15.5)	5 (31.2)
Black, African American	123 (100.0)	16 (100.0)
Marital status
Married/Partnered	28 (22.8)	6 (37.5)
Separated/Widowed/Divorced	40 (32.5)	4 (25.0)
Never married	54 (43.9)	6 (37.5)
Missing	1 (0.8)
Education
< High School	52 (42.3)	4 (25.0)
High School	41 (33.3)	7 (43.8)
College+	21 (17.1)	4 (25.0)
Vocational	8 (6.5)	1 (6.2)
Missing	1 (0.8)
Employment status
Employed full- or part-time	12 (9.8)	3 (18.8)
Retired	8 (6.5)	1 (6.2)
Unemployed	18 (14.6)	1 (6.2)
Disabled	80 (65.0)	11 (68.8)
Other	4 (3.3)
Missing	1 (0.8)
HIV stigma
13–23	78 (63.4)	11 (68.8)
24–33	26 (21.1)	3 (18.8)
34–43	12 (9.8)	1 (6.2)
44–52	7 (5.7)	1 (6.2)

Underlying Types of Stigma

The principal components analysis supported extracting one factor. Component 1 had an eigenvalue of 6.9 and explained 53% of the total variance in all of the items. Component 2 had an eigenvalue of 0.99 and explained an additional 7.6% of the total variance in all the items. The screen plot also supported a one-factor structure. Based on the screen plot and Kaiser's rule, we concluded that one factor best represented the data. Next, we extracted one factor using principal axis factoring in order to obtain the factor loadings. The factor loadings ranged from 0.53 to 0.81, with most being 0.70 or greater (Table 2). All items loaded strongly on to the one factor. Based on these analyses, we concluded that the HIV Stigma scale was a one-factor scale, and thus, did not measure different types of stigma. After further reviewing the items included in the scale, it was determined that the scale addressed internalised stigma.

TABLE 2 Factor loadings.

Item	Factor loading
1	0.75
2	0.70
3	0.56
4	0.64
5	0.68
6	0.53
7	0.73
8	0.77
9	0.73
10	0.73
11	0.81
12	0.76
13	0.72

Exploring Different Types of Stigma as Experienced by WLH

Post-intervention interview participants shared their thoughts, feelings and experiences in response to the vignettes. The quotes presented in the section below are verbatim, although they have been slightly edited to increase readability and remove identifiers. WLH experienced pervasive stigma and perceived that stigma was everywhere, noting that people stigmatised them no matter what. Four types of stigma emerged from thematic analysis: vicarious, enacted, internalised and perceived stigma.

Vicarious stigma emerged within multiple contexts of work life, family life and relationships. A 60-year old WLH with low stigma (total scale score = 22) spoke about her fears of revealing her HIV status to family members because of the discrimination her friend had experienced as a result of living with HIV:

‘… and this person told me that what they go through, when they go to their sister's house, and she's been positive almost 25 years, if she went over her sister's house today, she's still used paper plates, paper cup’.

One of the vignettes captured the experience of enacted stigma. A 55-year old WLH, who had low stigma (total scale score = 22), spoke about the enacted stigma she had experienced on multiple occasions. When revealing her HIV status to other people, she said they would become ‘standoffish’, wouldn't make eye contact with her, and would say really judgmental things:

‘In my life, I don't tell anyone because I've been done that way [referring to situation noted above]. And I said a few years ago, I was getting ready to fight this girl who was, she called me, she called me AIDS bitch’.

Another participant, a 60-year old WLH, who had high stigma (total scale score = 31) shed additional light on her experience of enacted stigma when she revealed her HIV status to a friend, when she was younger, and how her friend disengaged completely from the friendship:

‘I had one girlfriend. And what makes it so weird is I don't even remember her name now. But once I told her, I never heard from her again. And I remember that we were really tight and after I told her, we didn't … It was like, okay, I don't need you in my life, you know’.

Internalised stigma was also captured in WLH's responses to the vignettes. For example, a 52-year old woman with a total stigma scale score of 20, spoke of her experience of internalising negative stigma associated with HIV and how this impacted the way she viewed herself:

‘I was really shock[ed] and overwhelmed when I found out that I was HIV [positive]. I couldn't believe it because of the type of the person I am, and the way I carry myself, how clean I am, I keep my apartment spotless… But… it was my partner, and you know… Yeah, they feel hurt. Right. You… you feel bad enough about yourself because you have it, you know’.

Additionally, another 42-year old woman with a high stigma score (total scale score = 33) spoke of her experience of internalised stigma by explaining her feelings about how during her first years of diagnosis of HIV she had internalised the idea of HIV as a death sentence not only physically but socially as well:

‘… because, you know, like before, I had a lighter on my hand, and I let it go out. What did that mean? I was probably giving up, you know… because that's like a death sentence to us. But if you really look at it, it's not, it's not written on your forehead…’

Finally, WLH shared their experiences of perceived stigma. A 61-year old woman with a stigma score of 25 spoke on her experience with perceived stigma. According to her, perceived stigma influenced by social media in her experience has led to instances of enacted stigma where she has been negatively implicated:

‘Like say for instance… I gave a speech on HIV and you don't know my status and it gets on YouTube or Facebook… and some of the people in the building will be like “Girls, guess who gets HIV? What did you do?”… then everybody knows. And then they see it, the people in my building, they want to argue over the stupidest thing… and then you get into a more vulnerable thing and next thing, you know, they throwing it out at you’.

Similarly, a 61-year old WLH with low stigma (total scale score = 13), reported her experience with perceived stigma as:

‘If people find out, that's why you can't tell everybody, they may not want to stand besides you, or you know, they don't want to do things, they don't wanna touch your hand, they don't wanna touch nothing on you, they don't wanna touch your plate or cup, that's crazy, that's stigma!’

Discussion

Limited research is available to elucidate WLH's experiences related to different types of stigma. We investigated various types of stigma experienced by WLH using multiple approaches. We found that while exploratory factor analysis using the survey data resulted in one type of stigma (i.e., internalised), qualitative interviews revealed that all four types of stigma were present in the lives of WLH across different contexts, such as usual interactions with friends, families or bystanders and medical encounters with health care providers.

Overall, the study sample scored low on the HIV Stigma Scale, and 25.1% of the baseline sample had a stigma scale score > 26 (i.e., high stigma). A possible explanation for this finding may be that the HIV Stigma Scale measured only one type of stigma—internalised stigma. Using a sample of older adults (50+ years) who were at risk of or living with HIV infection, Emlet (2006) found that the HIV Stigma Scale had three underlying factors addressing distancing, blaming and discrimination. Given both studies' modest sample size (N = 123; N = 88), further research is warranted to confirm the underlying type(s) of stigma measured by the HIV Stigma Scale. Another area for future research exploration is to review the items included in published HIV stigma scales and identify how different types of stigma have been written into items so as to capture more than one type of stigma.

Based on the qualitative research findings, all four types of stigma were relevant to WLH in the study sample. The four types of stigma were deeply rooted into Black WLH's everyday interactions with people across different settings (i.e., home, neighbourhood and healthcare settings), and some types of stigma were closely intertwined with a layering effect (e.g., experiences of perceived stigma leading to enacted stigma). Stigma is a major barrier to effectively responding to the HIV epidemic (Kemp et al. 2019; Ojukwu et al. 2022). Given scarce research on this topic, it is difficult to infer if there is a one approach fits all intervention to eradicating stigma in people with HIV. Our findings indicate that it may be critical to address stigma as an integral part of future interventions targeting WLH. In this study, we used vignettes (stories) to talk about stigma, which was an effective method to discuss this topic with women. Storytelling might be one component of an intervention to address stigma among Black WLH. A recent systematic review and meta-analysis reported that narratives and storytelling were promising methods to engage Black women in various health topics (Ballard, Davis, and Hoffner 2021). Other researchers have also found that storytelling, delivered in peer support groups, was effective in reducing internalised and perceived stigma among women with substance use and mental health disorders (Kosyluk et al. 2021). Future studies may consider using storytelling as one possible approach to reducing HIV-related stigma among Black WLH.

In the new era of technology the role of social media needs to be further explored on the effects of stigma on WLH. Some WLH in the interview subsample noted social media (e.g., YouTube or Facebook) as a medium for their HIV status to be shared unwillingly and unknowingly with other people which resulted in spiralling of negative experiences with HIV-related stigma. While some studies have found that social media has provided a safe place for people diagnosed with HIV to find support (Taggart et al. 2015), our study suggests that invasion of privacy associated with social media may play a role in further stigmatisation of WLH. Further research is needed to explore how people living with HIV are being impacted by cyberbullying or privacy leaks on social media.

Limitations

This study had some limitations. The stigma study was nested within the CHECC-uP trial, whose main purpose was to promote cervical cancer screening among WLH through a health literacy–focused intervention. Therefore, post-intervention interview questions were primarily focused on addressing intervention women's experience with the CHECC-uP intervention, rather than exploring different types of stigma. We attempted to maximise variations in the types of stigma covered during the post-intervention interviews by using the HIV stigma-related vignettes. Additionally, our interview subsample consisted of WLH in the intervention group, although we did not find any statistically significant differences in baseline sociodemographic characteristics between the intervention and control groups or between the participants who were interviewed and not interviewed, which may strengthen the generalizability of these findings. Also, the length of time since women had been diagnosed with HIV was unknown; thus, it is unclear how long women had been living with HIV and experiencing HIV-related stigma. Finally, the study sample consisted of all cisgender, Black WLH in Baltimore, which may reduce generalizability of study findings.

Conclusion

Stigma continues to have a profound effect on WLH in the United States. Our study revealed that the HIV stigma scale, which is a widely used scale in HIV stigma research, only measured one dimension of stigma (internalised stigma). Although internalised stigma has been associated with profound effects on health outcomes in WLH, other types of stigma such as enacted, vicarious and perceived stigma also have an impact on how WLH view themselves and the world around them, as supported by our qualitative findings. When thinking about stigma in the context of HIV, it is vital for healthcare providers to think about the different types of stigma that exist in order to create effective patient-centred interventions. Current findings may help healthcare providers, especially nurses, to recognise and promptly address stigma-related barriers to HIV prevention, care and treatment, including deferred antiretroviral therapy initiation and nonadherence (Relf et al. 2021). Tackling such barriers is instrumental in optimization of health outcomes among WLH.

Author Contributions

T.M. and H.-R.H. conceived and designed the study. T.M., K.J.W.M. and C.-A.S. collected the data. T.M., K.J.W.M., C.-A.S. and H.-R.H. contributed and performed the data analysis. T.M. and H.-R.H. drafted the paper. T.M., K.J.W.M., C.-A.S., J.C. and H.-R.H. revised the paper. H.-R.H supervised the study. All authors read and approved the final version of the paper.

Ethics Statement

Johns Hopkins Medicine IRB approval was obtained before study initiation.

Consent

Every participant provided written informed consent.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

De-identified data will be made available from the corresponding author upon reasonable request.

References

Ballard, A. M., A. Davis, and C. A. Hoffner. 2021. “The Impact of Health Narratives on Persuasion in African American Women: A Systematic Review and Meta‐Analysis.” Health Communication 36, no. 5: 560–571. [DOI: https://dx.doi.org/10.1080/10410236.2020.1731936].