“I haven’t been ill, I know it’s there”: A case study examination of the social, behavioral, clinical, and structural factors that contribute to sustained viremia among women living with HIV

Abstract

Compared to their HIV seropositive male counterparts, HIV -seropositive women are less likely to achieve and retain viral suppression (VS). Data regarding the social, behavioral, clinical, and structural factors that facilitate or impede viral suppression among HIV seropositive women is needed. This study aims to examine HIV-seropositive women’s perceptions regarding factors that contribute to their HIV treatment decisions.

Two case studies describe the HIV treatment decision-making of two never suppressed, HIV-seropositive women aged 65 and 54. The framework method of analysis was employed to obtain a descriptive overview of three interrelated areas of inquiry: (1) the meanings women give to (VS) (2) social, behavioral, clinical, and structural obstacles related to HIV medication adherence and (3) women’s perceptions of what they need to achieve and sustain (VS).

The meaning of (VS) for both women is influenced by how they currently feel. Women’s general feeling of wellness detracts from any sense of urgency that may be associated with engaging in HIV treatment. Mistrust of medical providers and unstable housing/unemployment pose as obstacles to medication adherence. Finally, women’s accounts of what they need to achieve and remain virally suppressed is influenced by a gap in understanding related to HIV treatment.

HIV clinicians should routinely measure their patients’ HIV health literacy to ensure patients understand when to begin and why they should continue an HIV treatment regimen. To increase their capacity to provide appropriate HIV care, providers should take into consideration how patients’ life experiences and social locations influence their HIV treatment decision-making.

Background

A key goal of the National HIV treatment and prevention strategy is to increase viral suppression to at least 80% among persons diagnosed with HIV (Centers for Disease Control and Prevention [1]. The public health campaign Undetectable = Untransmittable, also known as U = U is helping to increase public awareness of the benefits of treatment as prevention and is informing HIV treatment and prevention policy [2]. Advancements in HIV therapies have led to rapid viral suppression among people living with HIV/AIDS (PLWHA) which in turn has contributed to a reduction in HIV transmission rates, as well as HIV-associated morbidity and mortality rates among the U.S. population [3].

However, the benefits of these advancements are disparately experienced by race and gender [4]. The HIV viremia trajectories of minority populations and women are often compromised as a result of social, structural, behavioral, and clinical factors [5]. As of 2014 in the U.S., HIV-seropositive Blacks and Whites achieved viral suppression at 48.5% and 62.0%, respectively [6]. Compared to their HIV+ male counterparts, HIV+ women are less likely to be virally suppressed [7]. Among HIV-seropositive women, Black and Hispanic women are less likely to experience recent and sustained viral suppression compared to their white female counterparts [7, 8]. A recent longitudinal examination of women’s HIV viremia trajectories identifies three distinct group-based viral trajectories including: low, intermediate, and high-probability of viremia [9]. Black and Hispanic women disproportionately experience intermediate and high-probability of viremia compared to white women [9].

Viewed through a public health lens, the U = U campaign should be generalizable to all PLWH regardless of their social location (e.g. race, gender, social class, sexual orientation, age, etc.). However, despite having increased knowledge of the individual and public health benefits of HIV medication adherence, many PLWH experience intersecting social determinants of health (SDH) that negatively impact their ability to effectively engage in HIV management throughout the HIV care continuum. For example, food insecurity [10], unstable housing [11], delayed access to HIV treatment [12], problems with health insurance status, social role strain, managing co-morbid conditions, and systemic HIV stigma have all been shown to negatively impact the ability of PLWH to adhere to their HIV medication regimen [13, 14]. Inconsistent adherence to an HIV treatment regimen increases the likelihood of experiencing intermittent or sustained viremia [15].

The availability of improved therapies has changed HIV into a chronic disease that with appropriate management results in a near normal life expectancy for PLWH; this in turn has influenced their identities [13, 16]. Building upon the premise [17], that managing chronic illness is work, the concept of the illness career provides insight into how the identities of PLWH may change across the HIV care continuum. The changing identities of PLWH, particularly women, may influence their HIV management behaviors, as well as their interactions within various social structures, including the family, health care, work, etc. However, few interventions exist that address how women’s changing identities intersect to influence their HIV treatment careers.

Guided by intersectionality and the life course health development perspective (LCHD), the goal of this qualitative study is to examine HIV-seropositive women’s perceptions of the barriers and facilitators to achieving viral suppression and remaining suppressed across various points in time throughout their HIV career. Three questions guide this research. First, what does viral suppression mean to women who are not suppressed? Second, what obstacles, if any do women experience with medication adherence and how have these obstacles changed across their HIV career? Third, what are women’s perceptions of what they need to achieve and remain suppressed? The information gleaned from this study can be used to inform the development of gender, life stage, and culturally relevant HIV treatment interventions that will remain pertinent over the course of the HIV care continuum.

Theoretical framework

The intersectional perspective or intersectionality examines how social variables such as race, gender, class, sexuality, etc. work simultaneously to produce or reproduce systems of privilege or oppression at the micro and macro socio-structural levels [5, 18]. In order to garner a greater understanding of virologic outcomes among women living with HIV it is imperative to consider how intersecting social identities influence women’s individual health behaviors as well as structural barriers to HIV care. For example, on the micro level women’s attitudes regarding gender role responsibilities and expectations may result in them being the primary health care managers for their loved ones [19, 20]. As a result, women often delay seeking health care for themselves in order to place the needs of important others ahead of their own [21]. On the macro level, the gender pay gap contributes to women’s increased risk of experiencing poverty compared to their male counterparts. Black and Hispanic women are especially vulnerable to experiencing poverty because Black and Hispanic women earn 61 cents and 53 cents, respectively for every dollar that a White male earns. In comparison, White women earn 77 cents for every dollar a White male earns [22]. It is important to note that poverty is a barrier to accessing antiretroviral therapy for PLWH [23].

The life course health development (LCHD) perspective is an emerging approach to understanding health [24]. LCHD is a multi-disciplinary perspective that seeks to bridge the gap between various theories and conceptual models in order to provide a comprehensive explanation of how health develops over the life course. A guiding principle of LCHD is complexity, which posits that health development results from adaptive, multilevel, and reciprocal interactions between individuals and their physical, natural, and social environments [24]. While intersectionality takes into consideration how various social factors intersect to influence women’s health across the life course, LCHD takes into consideration how multiplicative social, psychological, biological, and behavioral dynamics converge to influence health at given times after HIV diagnosis. This paper presents two life course case studies that demonstrate the applicability of both perspectives to identify factors that may be critical for long-term success in HIV treatment.

Methods

The WIHS is the largest prospective, observational study of HIV-seropositive and at-risk HIV seronegative women in the U.S. with an original enrollment in 1994–1995 [25]. WIHS collects clinical, behavioral, and social data from both HIV seropositive and the HIV-seronegative at risk. WIHS study sites are located in Bronx, NY, Brooklyn, NY, Washington DC, Los Angeles, CA, the San Francisco Bay Area, CA, and Chicago, IL.

Following approval from the Georgetown University Institutional Review Board, we used purposive sampling to recruit participants from the Washington DC Women’s Interagency HIV Study (WIHS) for life course interviews regarding factors that influence their HIV treatment decisions. A group-based trajectory analysis identified three distinct viral trajectory patterns including low (n = 3, intermediate (n = 11), and high probability of viremia (n = 5) [9]. Eligible women from each trajectory group from the DC WIHS were invited to participate and nineteen women underwent informed consent prior to the conduct of the interviews between February 2018 – July, 2018. Participants were provided with transportation assistance, refreshments and $50 cash as compensation for their time.

Of the nineteen interviews, this study presents two intrinsic case studies, both from the SV trajectory group. Of the SV participants, four identify as Black or African American and one identifies as White. In order to complete an intersectional analysis that includes race, we selected one Black participant and one White participant. We selected these two cases for their uniqueness, given that both participants may be considered long-term non-progressors (LTNP), and not necessarily for their representation of other cases in this data set [26]. Examining the HIV treatment decisions and experiences of LTNP’s may provide invaluable insight into how women’s subjective perceptions of their physical health and social roles (i.e. feeling good; employee, mother, daughter, spouse, etc.), intersect to influence their decisions to begin and sustain HIV treatment. In addition, the case study approach is also especially suited to describe behavioral processes, such as HIV treatment seeking [27].

Furthermore, the selected cases provide detailed insight into how intersecting social, behavioral, clinical, and structural forces influence women’s HIV career management in the context of their everyday lives. A qualitative method of inquiry, particularly life course case study design is especially important to garner a greater understanding of HIV treatment and medication adherence because of the potential to uncover knowledge and misconceptions that may not be identified using standardized questionnaires. We also sought to gain deeper insight into women’s understanding about their diagnosis, available treatments, and goals of care [28].

Interviews ranged in length from 60 minutes to 90 minutes and were co-facilitated by a medical anthropologist (LG) and one of two infectious diseases physicians (SK, ABS). We used a semi-structured interview guide in an iterative process to gather data focused on the social, behavioral, clinical, and structural factors that contributed to participants’ HIV viral load. We provided participants with a line- graph of their viral load across WIHS study visits for reference (See figures 1 and 2). Interviewers reviewed the graph with participants while asking them to recall life events at those specific time points that may have been associated with changes in viral load. Interviewers also had access to additional social and behavioral data collected as part of the WIHS semi-annual visits. These data included sociodemographic and drug and alcohol use histories; scores for loneliness, emotional/informational, and tangible social support, anxiety and depression, spirituality, trauma, and internalized stigma. These aggregate data from over the years of participation in the WIHS were used to guide the interview.

Fig 1.

Shirley’s Viral Load History 1995 – 2017

Fig 2.

Constance’s Viral Load History 1995 – 2017

Interviews were audio-recorded, transcribed verbatim and exported into NVivo 12 qualitative analysis software for data management. We employed the framework method of data analysis. The framework approach is particularly appropriate to utilize with multi-disciplinary research teams with varying degrees of qualitative analysis experience [29]. The research team decided upon a predefined coding matrix that allowed for the systematic application of codes by three coders (LWJ, LG, SK). The coders engaged in independent coding by reviewing the transcripts line-by-line. After the interviews were independently coded, the coders reconvened to discuss and/or identify any coding idiosyncrasies. The coders then identified how various codes intersected in order to explore the relationship and/or causality between the codes. This step allowed us to reduce the data in order to answer the research questions.

Results

Case #1

Shirley is a 65 year-old, never-married, college educated, heterosexual African-American woman. She was diagnosed with HIV in 1986 and enrolled in WIHS in 1994. In addition to HIV, Shirley has hypertension, diabetes mellitus, and chronic knee pain. See Figure 1 for Shirley’s viral load trajectory as recorded by WIHS from 1995 – 2017.

Behavioral factors – Substance abuse, unprotected sexual intercourse

Starting in adolescence, Shirley engaged in high risk behaviors for HIV acquisition including substance abuse and unprotected sex. Shirley also reported being raped when she was in her 20’s. When asked to describe how she became aware of her HIV status, Shirley stated,

“M: I tested because of my behaviors, because I was indulging in substance abuse, and unprotected sex. And they were givin’ free tests, so I said “let me go do this.” I did test positive…About a year later, I was dating this guy off and on and [sighs], not protecting myself…He told me later that he was HIV positive, so he didn’t tell me in the beginning…I didn’t pay attention because I was in the mix.”

Although Shirley decided to get tested partially as a result of testing availability ease, her diagnosis did not seem to have a significant impact upon her lifestyle choices. As she notes, she was “in the mix” which denotes that Shirley was caught up in activities and with people that she may not have intended to be involved in/with. Shirley always valued education because to her, education is a way to achieve social and political power. According to Shirley, “we must go to college”-- you know-- “get letters and degrees and knowledge,”-- you know-- to help our people… So that’s something to kinda help me-- you know--hold on, while I was drugging and a lot of this drugging was because I was alone and I wanted to belong…” Shirley is an only child raised by her working class grandmother and her mother performed basic domestic work. The intersecting forces of gender, race, and class likely influenced Shirley’s vulnerability of experiencing sexual violence at a young age and of being susceptible to engaging in high risk behaviors in order to achieve upward social mobility.

Social factors – Perception of social support & patient-provider communication

Shirley reported that she has very limited social support because she does not have family to help take care of her as she ages. As a result, she indicated that she will have to depend upon the medical community for support. However, Shirley did not specify what type of support she needs from the medical community. Shirley stated: “I look at our youth and they’re gonna be the ones to take care of us in the nursing homes and stuff. Ain’t no way. I’m an only child, I don’t have no brothers and sisters, no nieces and nephews, none of that so I depend on the medical community. I don’t know if I’ll be married-- you know-- when I get up in my 80s or whatever-- you know-- so I’m solely me, myself…” Although Shirley reports that she is currently alone, she scored a 2 on the loneliness scale that was administered within the last two years. Her loneliness score suggests that Shirley does not experience loneliness. Shirley’s score of 75 for social support suggests that she perceives that she has emotional, informational, and tangible social support.

Religion and spirituality have been important factors in Shirley’s perception of herself over the years. Shirley’s most recent spirituality score is 48, which indicates a high level of spirituality. According to Shirley, she grew up in the church, but she is not religious. She does not believe in organized religion because it is often very judgmental. In contrast, Shirley considers herself to be spiritual. According to Shirley, spirituality is affirming and has helped to give her hope to manage her HIV, whereas religion has not provided with her with hope. However, she appreciates the social bonds that religion often facilitates.

The excerpt below illustrates Shirley’s experience with religion and spirituality.

L: Do you regularly go to church or--?

M: I don’t do church…I’m spiritual, but I’m not religious

L: Say it again, you’re spiritual?

M: I can’t get with organized religions

L: Ok

M: That’s what I’m saying

L: Ok

M: I don’t have respect for Christianity, I don’t have respect for Islam… cuz the people make the [decisions]…I don’t need that, I don’t need a book to tell me to do the right thing.

L: Ok, ok.

M: But I do miss hearing the gospel being sung, cuz I grew up in the church.

L: In your case, did spirituality play a role in-- what kind of role it played in your life?

M: It played the role of hope, to know that there is a god, there has to be…

L: In terms of your HIV or in terms of your recovery from drug use, so was this helpful?

M: Yeah, cuz for one there’s a mighty force…All these instances and I’m looking and saying “why am I still here? I’m here for a reason and it’s not to be self-indulgent.” I’ve come to that conclusion…

Despite rejecting organized religion, over the years she has become spiritual which has prompted her to take better care of herself.

Shirley has a positive perception of her HIV providers. Over the course of the years, Shirley reports that she has only received HIV care from two HIV providers. Shirley’s continuity of care from her HIV providers may have a positive influence on her perception of patient/provider communication and her perception of social support. The excerpt below illustrates Shirley’s positive rapport with her HIV providers.

L: So overall, how many HIV doctors have you had?

M: Just him and the other doctor [inaudible] in the beginning. Do you all know where he is?

L: No

M: I would like to find him, that was in the beginning

L: Ohh, ok. Only these two doctors?

M: Basically

L: Did you always like them?

M: Yeah, oh Doctor [name deleted] is funny [laughs]

L: Did you feel like they always explained to you what’s going on?

M: Yes

L: Do you remember what they told you about your T-cells or your viral load, which one need to stay up or which one need to stay down?

M: Yeah

L: Did you ever feel stigma from the providers?

M: No

In further conversation about her providers, Shirley reported that she has a good rapport with them because they are honest and open with her.

L: You know when we talked about your doctors… I heard tha…you always liked your doctors… what is it in them that you like?

M: They shot straight from here, they were straight shooters, they didn’t-- you know-- be around a bush, they have a sense of humor, umm-- and professional at the same time, umm-- I just felt-- they just made me feel comfortable.

Shirley’s positive perception of her HIV providers is largely influenced by their style of communication. For instance, the above excerpt suggests that Shirley’s providers simultaneously demonstrate candor and empathy during patient/provider interaction.

Clinical factors – Viral load, CD4 T Lymphocyte count, & comorbidities

Shirley recently began taking HIV medication. Her decision to recently start taking HIV medication stemmed from her perception that her viral load was non-detectable, despite the fact that her WIHS data reveals that she experienced consistently high viral loads across numerous WIHS study visits. The following exchange provides insight into Shirley’s reasoning for not taking HIV medication until recently.

L: In the clinic, yeah. Ok, did they-- did they advise you to take medicines at that time?

M: No, because I was non-detectable. And my t-cell count was always high

L: Ok

M: I was non-detectable for…You all have records-- you know-- so…

L: Yeah

M: It was non-detectable, didn’t have to take medicines

L: So they did not advise you to take medicines?

M: I didn’t have to take meds. I’m on meds I just stared-- I just started, not even a year yet…Because my viral load j umped up…

L: We do you have your viral load data. We take your blood every time you come here. I can show you how it was.

L: Yeah, it was 1000 something, 2000 something, 3000 something, at some point it even came down to like 100 here, it was going a little bit up but not going too much high. But your CD4 basically kind of stayed up, sometimes it even went up the-- so what were the doctors saying to you, did they ever tell you, in all this time?-

M: Kept telling me it was non-detectable

L: Maybe it was non-detectable only once or twice…

S: Maybe they said you’re a non-progressor

M: Yeah, I’m a non-progressor

S: Yeah, which means your CD4 was staying high all the time, but your viral load was doing this-

L: So maybe they told you non-progressor, but not non-detectable

S: Yeah

M: …They didn’t tell me I’m a non-progressor till way down the road ….

Treatment was not initially recommended for Shirley because of her non-progressor status where she had high CD4+ T lymphocyte counts and low viral load. However, once her situation changed and she became eligible for treatment, Shirley noted that her adjustment to taking medicine coincided with the stress of dating someone with a drug addiction.

L: Yeah, a year ago it was 389

S: And that’s when you started medicines?

M: That’s when I started dating my friend

S: Ah, ah

M: And stress

S: And your CD4 took a nose dive

M: Yes

L: Ohh

M: And the only other time it dove like that when it hit 500, stress

S: This is the friend who was in the hospital?

M: [Nods head to indicate yes]

S: Ohh

M: Cuz I was dealing with his addiction.

This excerpt illustrates how Shirley’s desire to support her friend increased her level of stress. During this stressful time, Shirley was also adjusting to taking her medication.

Shirley said that she does not think of HIV often as she has so many other things to think about.

L: Is HIV on your mind all the time?

M: No

L: How often you think of it?

M: I don’t, I got so much other stuff to think about [laughs] I know it’s there… I haven’t been ill, I know it’s there.

Shirley reported that even though she has not been ill, her doctor advised her to take HIV medication due to her advancing age.

“Dr. (name removed) wanted me to get on the meds, because I’m older and I have carried the virus this long and when I jumped to 26,000-- he had a count, 26,000 viral load that’s when-- you know-- he said “eh, let’s get you on meds.” So I said “fine”.

Shirley reported that she is taking medication for hypertension and HIV. She only has problems taking her HIV medication when she runs out of pills.

L: You’re taking the HIV medicine…

M: I’m very regular with it…

S: When you run out of the pills, is the only time you’ve had problems?

M: Yeah, yeah.

S: When you have the pill at home you take them every day?

M: Everyday

S: You don’t forget?

M: No cuz I take it at night.

L: How many pills a day?

M: Take 1 each.

S: Two tablets?

M: One of each and my blood pressure so that’s 3 pills I take.

Structural – Unstable housing, unstable employment, racism, transportation

Although Shirley is a college graduate she reported experiencing unstable housing and unstable employment. According to Shirley, stable housing is a relatively new phenomenon for her. Shirley: “I’ve been at my apartment. First time I’ve ever been at one place this long, eight years. I can’t believe it, eight years.” Shirley’s unstable employment and housing may be a contributing factor to her ability to remain adherent with her HIV medication regimen. In addition to housing and employment, Shirley described a time where she experienced racism during a clinical encounter. Overall, Shirley reported that she does not feel unfairly judged by her health care providers but on occasion she has experienced overt racism during clinical encounters. Shirley equated her experience of racism during a clinical encounter to that of a horror movie. This experience has led to Shirley’s desire to ultimately seek health care and to grow old in a different country.

L: No, ok. Did you ever feel uh-- discrimination because you’re uh-- minority, because you’re African American?

M: One time, there was a nurse…this nurse she reminded me -- the movie children of the corn… It’s a horror movie…This woman reminded me of that movie, she was cold and she was distant and she jugged a needle in my vein, that’s where I experienced racism in the hospital. I could tell, and I told them “never, ever will she put her hands on me again.” That’s why lovely ladies, I am out of here, I refuse to grow old here in the U.S. of A.”

In addition to experiencing individualized racism, Shirley reported that all African Americans experience trauma related to institutional racism. She explained that African Americans may respond to historical trauma in different ways. For Shirley, she reports that she has bipolar disorder as a result of experiencing historical trauma related to gendered racism.

M: I was diagnosed with bipolar…And I want to say for real, any person-- any one of us who are African America living in America and something is not wrong with you, there’s something wrong with you. Because of post-slavery traumatic stress syndrome. We as a group of people, our group dynamic…and this is the aftermath, 400 years.

S: You never needed to take medicine for it?

M: I tried, they put me on lithium and they tried zo-- I don’t know-- Zoloft?

S: All of this while you were using still right?

M: Yeaaaahhh!

When asked if she ever had difficulty getting to her medical appointments as a result of a lack of access to transportation, Shirley stated:

M: “No, cuz I actually ask the bus driver for a ride, I have no problem trying to get around in DC.

L: Good for you.

M: I put a quarter in saying “that’s all I got bus driver, thank you…I could travel the whole city. Cuz it’s how you approach them-- you know-- you gotta give them respect…”

The above excerpt demonstrates Shirley’s efforts to find her way around a structural barrier (i.e. transportation) by facilitating positive social relationships with informal community gatekeepers (i.e. bus drivers).

Case #2

Constance is a 54 year-old, married, high school graduate, heterosexual, White woman. She was diagnosed with HIV around 1991 and has been a WIHS participant since 1994. See Figure 2 for Constance’s viral load trajectory as recorded by WIHS from 1995 – 2017.

Behavioral factors – Unprotected sexual intercourse with a high risk partner

Constance reported that she did not engage in any high-risk behaviors but contracted HIV from her spouse. She learned of her HIV status during a routine prenatal appointment. Constance reported being unaware that her spouse was engaging in high-risk behaviors throughout the duration of their marriage.

P: He’s the one who infected me… He was tested after I found out that I was positive. Because when I said I led a boring life— I really led a boring life. There was absolutely no way…

I had contracted this…He was very forthcoming, yeah, apparently he was a drug user and……I knew he was an alcoholic, but I didn’t know about the drugs and… And stuff like that…He died…He died not long after we found out we were…infected.

Constance’s recollection of her HIV diagnosis reveals that gender/power inequity, specifically cathexis likely increased her risk of contracting HIV. Cathexis refers to the gendered social norms that influence sexual role behavior in society as well as the affective (emotional) attachments women have [30]. Constance’s report that she led a “boring life” suggests that her behavior was guided by a desire to follow social role expectations (i.e. not questioning her husband, taking care of the household and children). In addition, Constance’s use of the pronoun we instead of I, when referring to her HIV diagnosis suggests that marriage, through a process of depersonalization influenced the social construction of her private identity and her behavior [31].

Social factors – Perception of social support, caretaking responsibilities, patient-provider communication

Constance remarried after her first husband died and has been with her current spouse for nearly twenty years. When Constance remarried, her spouse was HIV negative but now he is HIV-seropositive. When asked to describe how her husband contracted HIV, Constance reported that she is unsure of how it happened. Constance also reported that the only times she received HIV treatment in the past was during her pregnancies and after she learned of her second husband’s HIV diagnosis.

P: We don’t know how that happened, but he’s positive now.

L: Oh. When did he become positive…

P: About… well he found out about 5 years ago.

L: Okay. So was he being regularly tested?

P: I don’t know…He just wasn’t feeling well and I mean, he couldn’t figure out why he wasn’t feeling well, and she just did a, you know, a complete test over as far as I know just about everything. And yeah that’s how he found out.

L: Okay. Did you and him— did you used condoms all the time?

P: Mhm.

L: You told him already…

P: Yeah, yeah, he knew I was positive, yeah.

L: You told him before you became sexually active with him?

P: Yep, yep.

L: And…But then you got pregnant with him and had the child.

P: Yeah.

L: Right. So but, do you know how he became positive?

P: I don’t.

L: He never— did he— did he saying else? Does he have other risk factor like using drugs or…?

P: No. No.

L: You don’t…

P: It was a shock, honestly, it was a shock. But uh… he’s okay with it now [inaudible]. He was really the reason I started getting treatment because he was—he started taking treatment.

As outlined in the above excerpt, Constance became medically adherent once her husband also started an HIV medication regimen. Constance’s decision to begin taking medication once her husband began treatment supports the premise that she may struggle with having a private identity outside of the confines of marriage.

L: So is it right to say you support each other and talk about the medicines and…?

P: Yeah… yeah. before we go to sleep he always goes “did you take your medicine…? Do you have water to take your medicine?”

The above exchange demonstrates that Constance receives tangible and emotional support from her husband regarding her HIV medication regimen. Constance also receives tangible support from her husband regarding medication adherence because they both receive care from the same HIV provider and are prescribed the same HIV medication. Constance reported that she and her husband remind each other to take their medication.

L: Do you both take medicines?

P: Yeah. It makes it easy because if I run out I can steal his and if he runs out he can steal mine [laughs].

B: So you’re on the same medicine?

P: Yeah.

As indicated by her score of zero on the loneliness scale, Constance does not experience loneliness and her score for all types of social support indicates that she perceives that she has very high levels of social support. As indicated by a score of forty-seven on the spirituality scale, Constance experiences a high level of spirituality. When asked to describe what role, if any, that spirituality plays in her decision to take or not to take HIV medication, Constance noted that although she considers herself to be spiritual, spirituality has not influenced her decision to take HIV medication. However, she attributes her decision to take HIV medication to her husband and the encouragement she receives from WIHS staff.

L: Are you spiritual?

P: Yes.

L: Has that played a role in your treatment or no treatment?

P: No.

L: No. So it’s basically your husband’s sickness and WIHS staff? These are the two factors that made you go to the doctor finally and start your medicines?

P: Yeah.

B: What makes you keep going?

P: I don’t know…Honestly, I don’t feel any better taking the medicines, I mean I don’t feel like I’m any healthier, I don’t, but now it’s a habit…

When asked to explain spikes in her viral load, over the course of nearly twenty years, Constance’s response illustrates how her caretaking responsibilities may have contributed to her viral load trajectory.

P: This is ‘98… that was when I was on AZT with (child’s name removed for confidentiality). This would’ve been…And then when my sister died there’s another spike.

L: Which year was that?

P: She died in…oh, um, we we’re just talking about that. It was either 2004 or 2005… Yeah, see. Big spike at WIHS study visit 21.

L: Oh.

P: Yeah. that’s (sister’s name removed for confidentiality) death right there. So it does affect me— my life experiences. But I don’t know about 2009. That one [spike in viral load] has me puzzled”.

When asked to describe what communication she has received from her HIV providers about her CD4 count and her viral load, Constance reported that her providers have basically just told her that her viral load should be undetectable. The exchange below highlights Constance’s perception of the HIV education communication she receives from her HIV provider.

L: Did either of the doctors ever explain to you how your viral load should be or how your CD4 should be? The t cells or CD4, whichever they used.

P: Dr. (named removed) basically just talked about the viral load and it should be undetectable on the medications. That’s all he really talks about. He doesn’t talk about the CD4.

L: Did he ever explain to you how they should be?

P: No.

L: Ok the one who explains to you basically—he basically talks about the viral load?

P: Mhm.

L: Ok. Um. They’re kind of related right? Basically if your viral load is going up your CD4 will drop?

B: Generally, but the viral load really gives up a measure of how much virus is in your body and that’s probably why Dr. (name removed) uses that to talk to you when you go for visits because it says if the medicine is working or is it not working so the viral load is kind of that first indicator there. The CD4 tells us how your immune system is working…

L: Okay, but the good lesson from here is that medicine definitely seems to work for you.

P: Yeah, it’s – I think it’s very obvious.

Overall, the above excerpt suggests that Constance may not have a clear understanding of the meanings associated with her CD4 count and viral load.

Structural factors – Gender discrimination during clinical encounter, inadequate health insurance coverage, indirect racism, gender wage gap

Over the years, Constance has avoided seeking any type of health care with the exception of prenatal health care. An approximate fifteen year lapse exists between Constance’s last and current HIV treatment. When asked to describe her health seeking behaviors over the course of the years, Constance revealed that she stayed away from all doctors, with the exception of seeking prenatal health care, until her current husband was diagnosed with HIV. Constance’s avoidance of health care providers stemmed from the trauma she experienced with her provider who informed her of her HIV status during a routine prenatal visit. Constance reported that her obstetrician scolded her but not her first husband for being HIV positive.

L: Were you going to your primary doctor in general?

P: No, I stayed away from doctors.

L: In general. Okay.

P: Yes.

L: And the GYN who delivered your last child, you said you liked him?

P: Mhm. Yeah.

L: So did he try to tell you to go to an HIV doctor? Get treated for that?

P: Of course he did. Yep.

L: But you didn’t go… What did the first doctor say that he was able to-- he turned you off like that, from all the doctors?

P: Because he pretty much was blaming me…And I was pregnant. I was happy. I thought I was coming in, something was wrong with the baby and he was all “I thought, I thought you had, I thought we had all of our cards on the table.” This is what’s going on and he wasn’t happy.

L: Was your then husband with you when he told you about that?

P: Mhm. ‘Cuz he called me and told me I needed to come in and I said okay, is it serious enough that I need to bring my husband? And he said yes.

L: And he blamed you?

P: That’s the way I felt.

L: Yeah, but he didn’t blame your husband.

P: No.

L: And your husband didn’t jump up to take the blame?

P: No.

Constance’s account describes how she experienced gender discrimination from her provider. In addition to experiencing gender discrimination during a critical clinical encounter, Constance described experiencing gender discrimination in her daily experiences. For example, Constance currently works in a male dominated field and she often feels invisible to others. She also noted that her life experiences including loss of employment, the death of loved ones, and unstable health insurance have contributed to her viral load spikes.

In addition, Constance’s account of having access to HIV medication seems to be different from what her husband experiences. Constance also seems to have less access to medication compared to her husband and is often dependent upon her husband to gain access to HIV medication. The excerpt below reveals the challenges that Constance has experienced with being denied health insurance coverage for her medication.

P: We were on my husband’s insurance…And when he retired on disability, we had to do the cover up, every time I went to the doctor, every time we had to submit prescriptions and then they would deny it. Then we would have to call and say we paid for it and we were covered and then we would get it. So there were gaps…

L: Oh, okay.

P: … where we weren’t taking medicine.

L: Okay.

P: So that’s what that is.

L: Oh yeah, it really spiked.

B: How long did it take you to get everything back together with your insurance?

P: Not until January this year when— we’re on my insurance now ‘cuz we—we aren’t paying 3000 dollars a months for that Cobra coverage. Last time I got a refill I only got a one month refill but he got it for 3 months so he’s like, “Ok were good for two months.”

Constance has had to confront racism indirectly, through what is known as rebound racism [32, 33], because her husband is an immigrant from a Latin American country. Constance revealed that although she had stable employment with excellent health benefits, she felt forced to give up her job as a result of her husband’s immigration status. Constance held a position that required a federal government background check, which would have potentially exposed the fact that she was married to an undocumented citizen. The following excerpt illustrates Constance’s reasoning for leaving her secure job.

P: That was a fun job. I enjoyed that, but I left because when I married my husband I got myself in the middle of this illegal immigrant community…And I would’ve lost my security clearance…I had a top secret security clearance.

It is important to note that as a result of institutionalized racism, Latin American and other racialized immigrant groups are disproportionately impacted by immigration enforcement measures [34]. When racism is directed at the partner of color within an interracial relationship, white women may directly experience financial, emotional, and physical pain [33]. Constance’s fear of losing her security vulnerability of being detained and/or deported

Discussion

The selected case studies describe how clinical, social, behavioral, and structural factors intersect to influence HIV-seropositive women’s HIV career management trajectories. Both women experience sustained viremia, but for varying reasons. Race, gender, and class have intersected in diverse but distinctive ways to influence the HIV career management decisions of both Shirley and Constance. Our findings suggest that the meaning of viral suppression for both women is largely influenced by how they “feel.” According to Constance, HIV medication does not make her feel any healthier and Shirley’s feeling of wellness seems to detract from any sense of urgency that may be associated with engaging in HIV treatment. The experiences of Constance and Shirley echo results from a qualitative study of PLWH who are not engaging in HIV treatment because they feel healthy and “normal” and that the “costs” of taking HIV medication (i.e. medication side-effects, conceding loss to HIV) outweigh possible benefits [35].

Significant obstacles to medication adherence for both women included, gender discrimination, racism, and low HIV health literacy, specifically HIV treatment and transmission literacy. In addition, both women experienced mistrust of medical providers during some point in time. Shirley’s negative experience occurred with a nurse and Constance’s occurred with a doctor. However, over time, the women’s mistrust of providers seems to have decreased partially as a result of increased patient/provider rapport, and a desire to increase their chances of aging well with HIV. Research finds that mistrust of care providers is a significant barrier to connecting women, especially African American women to HIV care [12]. The origin of Shirley’s mistrust stems from her perception that she was being treated unfairly primarily due to her race. In contrast, the origin of Constance’s mistrust of her care providers stems from her perception that she was treated unfairly primarily as a result of HIV stigma and gender discrimination, specifically the sexual double-standard related to HIV stigma [36]. Even though Constance is White, being married to a racial minority undocumented citizen resulted in a reduction of her situational white privilege. Due to the fear that her minority spouse would be racially profiled, Constance reported having a mistrust of the U.S. immigration process. This mistrust influenced her decision to forgo stable employment with benefits. Without employment benefits Constance was unable to access HIV treatment.

Both women’s experiences of mistrust led to their desire to forgo seeking HIV treatment and/or to delay seeking treatment. In Constance’s case, her decision to begin treatment was largely fueled by her husband’s need to begin treatment and not by her individual identity but by her collective identity as “spouse”. Berger and Kellner [37] note that engaging in everyday spousal activities may serve to increase intimacy and closeness in a marriage. Taking HIV medication alongside her spouse may be a symbol of marital intimacy for Constance. A recent study regarding how partner residence influences HIV testing behaviors among Latino immigrants concludes that shared partner residency is positively associated with greater partner approval to test [38]. These findings also provide a basis for understanding how shared residency influenced Constance’s decision to engage in HIV treatment because shared residency is vital to Constance’s collective identity as spouse. Constance’s desire to begin treatment as a couple and not as an individual may reflect how women’s identities are shaped by marriage. According to Soulsby and Bennett [31], as a result of social and cultural expectations regarding marriage, women are less likely to maintain an independent identity within marriage compared to men.

However, cultural expectations regarding private identity often differ between married White and married Black women [39, 40]. For example, Black women are often raised to maintain their independence even within the institution of marriage. Due to historical and continued institutional racism and sexism, Black women are often socialized by their families to maintain self-reliance [39]. Although she desires to be married, Shirley is not. She seems to have a stronger personal identity compared to Constance. Unlike Constance, Shirley’s decision to begin HIV treatment was prompted in part by her desire to age well because she does not have the support of a spouse or family. Shirley also has plans for her future which include an international relocation and possibly marriage.

It is important to note that Constance’s perception of provider mistrust originated when she received her HIV diagnosis. Keeping in mind that Constance was unaware that she was at risk of contracting HIV, she was completely unprepared to receive a diagnosis. In addition, the manner in which her provider relayed her diagnosis traumatized Constance. In contrast, Shirley was somewhat prepared to receive a diagnosis of HIV because she sought out HIV testing as a result of engaging in high-risk behaviors. A critical step to linking to care is believing that one is at risk of HIV and/or identifies with an HIV community [41]. Compared to Shirley, Constance did not experience either of those conditions. Future research is warranted that further examines how women’s experiences of being newly diagnosed influences their HIV treatment decision-making as they age.

Although both women scored high on the social support scale across multiple, consecutive WIHS visits, social support did not seem to be a significant determining factor in the women’s decisions to link to HIV treatment. This may be due in part to women’s understanding of the meaning of their CD4 count and viral load, which suggests that health literacy, specifically treatment literacy significantly drives their HIV treatment decision-making. This finding is in alignment with research that concludes that among PLWH, social support does not compensate for low health literacy [42]. Adequate health literacy is critical to improving the health of PLWH, especially among older PLWH [43]. In addition, as the women age, they are likely to experience additional chronic conditions that they must manage simultaneous to HIV. Research finds that older HIV+ women with comorbidities often find it more difficult to manage those conditions compared to HIV [13]. Shirley’s experience of managing HIV and other chronic conditions poses a challenge for her because she already has “so much other stuff to think about”.

In addition to experiencing other chronic health conditions, some of the “other stuff’ that the women have to think about include their ability to consistently access HIV medication, maintain stable housing and employment, fulfill their caretaking responsibilities, and navigate hostile social environments. In order to overcome structural barriers to HIV treatment, Constance and Shirley were able to skillfully navigate various obstacles. For example, although Constance has not always been able to access HIV medication, she found creative ways to overcome these obstacles by sharing medication with her HIV+ husband and by communicating with her health insurance providers. Although sharing medication with her husband helped to solve a short-term problem, it can lead to the long-term experience of intermittent adherence for both Constance and her husband. In addition, intermittent adherence places Constance and her husband at increased risk of being newly infected with drug resistant strains of HIV [44]. Constance expressed being less than enthusiastic to take HIV medications because to her, medication does not add to the quality of her life. Both, of the women’s perceptions of the utility of HIV medication stands in stark contrast to the biomedical narrative that has positively reframed living with HIV [45].

Despite experiencing individual and historical trauma related to gender and race, Shirley has been able to partially manage barriers including, living without family support, unstable housing and employment to managing HIV and chronic illness treatment by drawing upon her spirituality and the support of her care providers. However, even with skillful navigation of various obstacles to HIV treatment, Constance and Shirley have not been able to consistently suppress their viral loads.

Throughout the course of the interviews, we found that both women seemed to have an unclear understanding of the meaning of terms including CD4 count, and non-progressor and the relationship of those terms to their viral load. As such, we were unable to definitively discern what their perceptions are regarding what they need to achieve and remain suppressed. However, it is clear based on the women’s experiences that having consistent access to HIV medication, experiencing affirming patient-provider communication about HIV treatment, and receiving ongoing HIV health literacy education may be essential to women achieving viral suppression and remaining suppressed. In addition, both women’s views related to viral suppression seem to be conflated with the health benefits/costs of taking HIV medication and being a long-term non-progressor. Previous studies have concluded that the views of PLWH about HIV treatment are significantly impacted by their level of HIV literacy [46]. Future research is needed to specifically examine the role that HIV health literacy has among the treatment decision-making practices of women ageing with HIV.

A significant strength of this study is that it draws upon clinical data as well as longitudinal participant data and we did not solely rely on participant recall. In addition, the in-depth interviews were conducted by an interdisciplinary team of researchers who were able to elicit responses from women regarding the social, behavioral, and clinical factors that influence their HIV management trajectories. During the course of the interviews the clinicians were able to uncover women’s understanding of clinical treatment guidelines. In doing so, the participants were able to elaborate on the clinical factors that influenced their decisions to delay seeking HIV treatment. Having an improved understanding of women’s interpretation of their HIV treatment recommendations offers HIV providers a foundation upon which to create relevant HIV treatment education. Although we were able to utilize clinical data to support participant reports, recall bias may have influenced women’s perceptions of their HIV career management practices. In addition, the cohort effect may also serve as a limitation to this study [47]. Women’s perceptions of their HIV treatment behaviors could be influenced by their participation in a longitudinal study regarding HIV/AIDS among women.

Conclusion

Even before their HIV diagnoses, Constance and Shirley experienced gender-power inequality in their sexual relationships with male partners and/or sexual trauma, as well as economic and housing instability, which negatively impacted their lives. Living with a chronic illness has been found to significantly restrict the lives of those managing illness [48]. Given their past and current social locations, it may be argued that HIV chronicity places Constance and Shirley at an even greater risk of leading restricted lives, especially as they age, which in turn may have an adverse impact on their decisions to engage in HIV treatment [48]. Receiving an HIV diagnosis may be traumatic for anyone; however, the likelihood of experiencing trauma related to the initial diagnosis may be greater among patients, especially women who are unaware of any risk factors [49]. Thus, providers and staff tasked with disclosing patients’ initial diagnoses and linking them to subsequent care should engage in routine clinical empathy training [41, 50].

HIV care providers may be their patients’ only confidante and are in a unique position to ensure that their patients are receiving the appropriate medical and mental health care. In addition, HIV care providers should routinely measure their patients’ health literacy, specific to HIV/AIDS [43] and ensure that their patients understand when to begin an HIV treatment regimen. In an effort to increase their capacity to provide gender and culturally relevant HIV care, it is imperative that HIV care providers take into consideration how patients’ life experiences and social locations have been and continue to be impacted by various social, structural, clinical, and behavioral factors which influence HIV treatment decision-making.

Table 1:

Shirley’s Mental Health Scores 2013–2016

	V38 (2013)	V39 (2014)	V40 (2014)	V41 (2015)	V42 (2015)	V43 (2016)	V44 (2016)
Loneliness Scale		7	5	0	5	0	2
Social Support: Emotional/Informational		78	100	84	75	75	75
Social Support: Tangible		62	100	50	75	75	75
Anxiety Score		6	12	3	0	1	2
Spirituality			40		48		45
Internalized Stigma	8		5		7

Shortened Loneliness Scale (10=most loneliness, 0=least loneliness); Emotional/Informational Support: MOS-SSS (100=most support; 0=least support); Tangible Support: MOS-SSS (100=most support; 0=least support); Anxiety: GAD-7 (21=most anxiety; 0=least anxiety); Spirituality (FACIT-SP) (0=low; 48=high); Internalized Stigma (0=high stigma; 10=low stigma)

Table 2:

Constance’s Mental Health Scores 2013–2016

	V38 (2013)	V39 (2014)	V40 (2014)	V41 (2015)	V42 (2015)	V43 (2016)	V44 (2016)
Loneliness Scale		0	0	0	0	0	0
Social Support: Emotional/Informational		94	100	97	100	100	100
Social Support: Tangible		100	100	81	94	100	100
Anxiety Score		0	0	0	0	0	1
Spirituality			48		41		47
Internalized Stigma	7		8		8

Shortened Loneliness Scale (10=most loneliness, 0=least loneliness); Emotional/Informational Support: MOS-SSS (100=most support; 0=least support); Tangible Support: MOS-SSS (100=most support; 0=least support); Anxiety: GAD-7 (21=most anxiety; 0=least anxiety); Spirituality (FACIT-SP) (0=low; 48=high); Internalized Stigma (0=high stigma; 10=low stigma)

Availability of data and material:

The WIHS Public Data Set provides de-identified data (meeting HIPAA criteria) that may assist anyone interested in public health research. The WIHS data may be used to research natural and treated history of HIV in a cohort of women, including the examination of laboratory markers of HIV, antiretroviral therapies, and outcomes of advanced HIV disease. Access to the WIHS Public Data Set may be obtained by filling out the MACS & WIHS Public Data Set Request Form.