Distinguishing and labelling differences
We sought to describe labels for people associated with AIDS and the sociocultural context for the production of labels. We coded expressions about gender, race/ethnicity, sexual orientation, employment, age, and religiosity. These categories are taken-for-granted labels for groups rather than carefully constructed utterances (Link and Phelan 2001). Categories of PLHA and HIV-risk groups included heterosexual men, heterosexual women, children of PLHA, drug users, homosexual men, sex workers, poor people, and promiscuous persons. Participants used both colloquial and scientific labels. For example, female sex workers were referred to as ‘commercial sex workers’, ‘prostitutes’, or ‘skettels’, but the latter term also referred to female promiscuity. When referring to gay men, some participants used pejorative terms (e.g.‘bullers’, ‘chi-chi men’), whereas others used language-neutral expressions (e.g.‘gay’, ‘homosexual’). Providers also referred to gay men as ‘MSM’. Gay men tended to self-identify as ‘gay’, ‘homosexual’, and, occasionally, ‘MSM’. Participants did not describe differences or labels based on race/ethnicity, which may seem counterintuitive, given Trinidad and Tobago's racial/ethnic demographics. Tobagonians noted distinctions made about HIV risk between locals and wealthy Europeans, a belief derived from lore that AIDS was ‘imported’ by a promiscuous European female migrant.
Associating human differences with negative attributes
To uncover stereotypes associated with the above labels, we coded automatic expressions of negative attributes. We also drew upon data wherein we prompted participants to describe characteristics associated with various categories. Stereotypes related to HIV transmission that revolved around infidelity, gender, and sexual orientation follow.
‘Not Behaving’ leads to transmission: According to PLHA and providers alike, religious culture influences the view that HIV acquisition is a consequence of immorality and shirking marital responsibility:
|First participant:||Some people believe [AIDS] occurs from God because they weren't behaving themselves.|
|Second participant:||You have to understand that we are . . . basically a religious society. . . . Either you are gay or you’re sleeping around . . . you must have committed some great sin and then you’re blamed for having committed this great sin (Trinidadian MSM).|
Gender stereotypes – a double standard: Participants emphasised that a double standard for sexual behaviour exists. Women are socially prescribed to get married and have babies with one man. Men are supposed to act ‘normal’ while hiding extramarital relationships. On the other hand, women viewed as ‘not behaving’ are sometimes scorned more than heterosexual men, who are culturally scripted to be promiscuous. Female PLHA who are known to be morally upright and religious may be regarded as innocent victims who suffered the indignity of unfaithful husbands. However, even the moral convictions of church-going, civic-minded women with HIV/AIDS may be disregarded by in-laws and congregants.
Homosexuality – a sin punished by AIDS: Homosexuality is scorned in the Caribbean and considered a sin punishable by HIV infection. Even though epidemiology describes a heterosexual epidemic, some providers nonetheless link AIDS with homosexuality and consider HIV infection inevitable for MSM. Some providers, however, seemed to wish to counteract the negative view of homosexuality and, to some degree, contest whether homophobia is as big a concern as represented in the literature.
Gay participants, however, said they were doubly stigmatised, supporting Link and Phelan's (2001) notions that pre-existing differences fuel stigma.
[T]he HIV/AIDS thing . . . is kind of multiplied by twice because of the heavy stigma . . . the level of wrongness and impureness and of how very un-Christian-like you are if you are positive. And if you are gay and you have it, it is worse yet (Trinidadian MSM/PLHA).
Separating us from them
We coded expressions comparing group attributes. Sometimes dialogue was prompted by questions about how ‘we’ and ‘they’ are different; other times the expression ‘us versus them’ was in vivo.
People in the eastern Caribbean cling to the idea that the ‘Big A happens to them and not to us’:
[I]t was first diagnosed among the same-sex community and so it immediately became a disease that was only for same-sex community members. . . . [W]e got more information on drug use, and they said, ‘Well, I'm not a drug user and I'm not a homosexual, so I'm not at risk for HIV/AIDS’. But even then with the progression of HIV/AIDS in the heterosexual community, we still continue to put up those barriers. . . . People say, ‘Well, I've been married for the past 20 years, I am not at risk because my husband is faithful to me, I'm faithful to him’. But that might not be true and we exclude ourselves. We, of course, exclude ourselves ‘cause we go to the gym and we are fit and we are good Catholics. . . . [T]here is always something that prevents us from being at risk for HIV/AIDS, but even despite all of that, there is a general negative view of HIV/AIDS and the types of persons HIV/AIDS is associated with (Trinidadian provider).
Comparisons invariably result in social distancing. Although distancing serves the purpose of marginalising subaltern groups, such dissociation is also a way to cope with the fear or realisation that one may not be so different from ‘them’ as hoped. Of course, there are varying degrees of ability for some persons to evade detection as PLHA or risk-group members. Wealth buys better health care in private settings, thereby allowing some PLHA to avoid scrutiny in public clinics.
Even within subaltern groups, members construct ‘us-versus-them’ dichotomies. For example, gay participants described how higher social standing affords distance from the common social construction of gay men as sexual deviants:
|First participant:||In the gay community . . . there are the aloof ones, as they call it, or the pompous ones as we call it. They feel like they are less of a threat of being a victim and less likely to be victimised of being positive, opposed to the, I don't know how the exact word, what is it? The common one, right?|
|Another participant:||[adds] The others.|
|First participant:||[resumes] I'm not liming [hanging out] with this one, I'm liming with that one, I'm not with this one. I can't get it and the common person . . . what's the word?|
|Another participant:||[interjects] They call it the gutter whores.|
|First participant:||[resumes] The ones who think that they are up there, that they are not susceptible, are not possible to actually contracting the virus. . . . But there is actually no repercussion because the ones who are so aloof actually are quite gutterish, actually more gutterish than the gutter ones. The gutter ones may be gutterish because of circumstances and they probably have more morals. . . . They both mix. That's why no one is safe in this really small community. I think [the aloof ones] have probably hidden behind a façade of all these things, money from parents or whatever . . . It's them and we of those up in there . . . so you know we would never get it (Trinidadian MSM).|
Status loss and discrimination
Data revealed that loss resulting from stigma occurs along a continuum of harm, in keeping with the fourth component of Link and Phelan's (2001) model. PLHA described specific and generalised situations wherein they suffered status loss: they lost favour in neighbourhoods, families, and churches, and were publicly humiliated. Beyond status loss, PLHA described how they suffered individual discrimination, such as losing jobs through claims of redundancy. Most harmful, though, are examples of stigma that seem codified in policy or institutional practice as structural discrimination. Stigmatising conduct by providers – reported by PLHA and providers alike – included judgment and contempt demonstrated verbally and nonverbally, arbitrary and dramatic use of universal health precautions to signal disgust or to disclose a patient's serostatus, and confidentiality violations. These findings are interrelated and support the notion of a continuum of harm. Although an outsider might suggest contempt is less harmful than breaches of confidentiality, which in turn is less harmful than medical neglect, individuals may rank these manifestations differently. For example, neglect may seem most harmful from a medical point of view, but PLHA may consider confidentiality violations more egregious.
Contempt: Some providers are judgmental and demonstrate contempt verbally and physically. As described above, Caribbean societies are highly influenced by religion. Thus, providers are subject to the same concerns about morality as the public. These attitudes can lead to lectures by providers who use their professional power to condemn under the guise of patient education.
About two years ago I went to get a test for genital warts. . . . [T]here was . . . a male nurse. . . . He told me to pull down my pants and press my hands against the wall. He said, ‘Open your ass; I am going to test you’. So I did as he said, he shined the light and . . . the nurse decides to say, ‘Why you doing it with a man?! That is so wrong! . . . That's why you get this thing now because you are not supposed to be buggering your ass!’ They put the medication on and said to come back in a week. . . . I am frightened for two years to go back and get the results of the test (Trinidadian MSM).
Scorn in medical settings is enacted nonverbally, too. PLHA described how some hospital staff demonstrated their disgust by holding bedpans at a hyper-extended arm's distance or making a show of double-gloving before delivering water, food, or medication. In some cases, this contempt may originate from fear of contagion and nonenforcement of universal health precautions, knowing or not knowing a patient's HIV status on general hospital wards, and lack of specialised HIV/AIDS training. One participant suggested fear of transmission is perhaps justifiable with a ‘first AIDS patient’. ‘The only person I might kinda excuse now is student nurses. And even they should get firsthand information of HIV in classroom. . . .’ (Grenadian provider). However, even supposedly seasoned doctors can react badly to unexpected physical contact.
I went to . . . a place where they treat all sexually transmitted disease. I had a wart on the inside of my gum and they send me to this specialist doctor, a lady from India there and she give me some cream. And after two weeks the cream wasn't working and I went back to she. And I went very early, but [by] 12 o’clock or 1 o’clock nobody wasn't seeing me as yet. So I see the doctor passing . . . and she didn't hear me. So I just went and I just touch her like that [gestures touching her shoulder] . . . I say, ‘DOCTOR!’ and she says [screaming], ‘Don't touch me! Don't touch me!’ I just bolt out from the place. . . . [A]nd she is a doctor in a venereal disease place (Trinidadian PLHA)!
Arbitrary or universal health precautions? Providers suggested there has been ample opportunity to appreciate the need for universal health precautions, including using gloves for interacting with patients when there is a chance of exposure to bodily fluids. These precautions are not, however, always followed with the general population of patients, but when a patient is known or presumed to be HIV-positive, staff may quickly don them. Because glove use can appear arbitrary, PLHA suspect there is more going on than fear of contagion.
I was at the hospital and a nurse is bringing a glass of water for the patient I'm [visiting]. She put on a glove now to get a glass of water. . . . And she giving him a glass of water, and she puts her gloves on just the right hand. [Participant mimics how the nurse held the glass far away from her body.] . . . I just took the water out of her hand and toss it behind her. . . . I got so angry because if I'm there and I see something like that, then for sure I'm gonna know, and the first thing that's gonna come to my head is that person is HIV-positive (Trinidadian service volunteer).
Providers disagreed about whether all personnel should be advised when a patient had HIV. Some suggested that knowing a patient was in a later stage of the disease trajectory or performing invasive tasks should trigger the use of gloves, while others opined that these precautions should be taken always with every patient regardless of disease or trajectory:
|First participant:||Are we really practising universal precautions because you know what . . .|
|Second participant:||[interrupts] They not really practising universal precautions. Maybe [if] they know someone who is HIV positive, they will practise some form of precaution, and maybe that's why people [should] treat everybody as [though they were seropositive]. Then you will have no reason to . . .|
|Third participant:||[interrupts] It comes back to attitude.|
|First participant:||Once you’re a professional, I think we all should practise universal precautions. That way, you don't know [the patient's serostatus], and you practise universal precaution. That's how I look at it. . . . So they better off not knowing. To me the treatment will be better.|
|Fourth participant:||. . . If it is observed that nurses, when they are aware that someone has HIV, hardly wants to take good care of them, I think it might be better that they don't know [the patient's serostatus]. Because the person needs your care, so that emotionally, because if emotionally, you’re not well, it affects everything else.|
|Fifth participant:||But it goes back to the past, before I came and joined the program, that, um, there was this conflict where staff hear someone died of AIDS and they said, ‘Oh,’ you know, ‘nurse did not tell me, and look I went ahead’. And I say it is your problem. You should have practised universal precaution. Nurse don't have to tell you this (Grenadian providers).|
In hospitals in the past, PLHA were given disposable plates and cups rather than china or glass like other patients. Participants clarified that this practice was adopted to protect PLHA from contaminants on china or glass that was not properly cleaned. But to PLHA, the practice was stigmatising because it signalled who had HIV and who did not. It is unclear if this practice has been abolished or if it is occasionally practised, perhaps to broadcast a PLHA is on the ward.
Neglect in health settings: Participants described a variety of examples of neglect in hospital settings, including not tidying beds, not bathing patients, withholding water or food, and ignoring patient or family requests:
If you tell [PLHA] they have to go to the hospital to get treatment, they will refuse because of the way they were treated before. . . . There was one guy asking for some certain things to be done, and he was asking for water and so on, and some of the nurses refused to give him water, and they wouldn't want to be doing things for him the way they would treat another client (Grenadian Provider).
Beyond emotional repercussions, neglect can have debilitating consequences. For example, leaving medications at the bedside may be a case of neglect or may serve the purpose of signalling who has HIV, or demonstrating contempt. Because antiretroviral regimens can be complicated, such neglect can dampen pharmaceutical benefit. However, neglect may be wrongly assumed:
We got to one of the patient's bedside and saw her medications there. . . . I'm wondering why it's not in the tray like the other clients’, patients’ medications, why hers has to be taken and put by her bedside. That client is a quite knowledgeable person, a smart girl who had been through school . . . when I asked her why, she tell me, just, you know, for discharge (Grenadian Provider).
Explanations can be rational, but the effect of leaving the medication in plain sight may be unintentionally stigmatising.
In some cases, it seems providers draw upon power differentials to abdicate responsibilities to professional subordinates, families, or volunteers. Of course, health professionals are not immune from having judgmental feelings towards their patients with HIV/AIDS, and thus, some gave substandard care. Reasons for neglect and flagrant forms of discrimination include some providers’ feeling that some patients are undeserving of their care. PLHA suggested hostility fuelled refusal to provide care. ‘[Y]ou have some members of staff who would . . . who would bluntly tell you outright, “Why you come here, why don't you stay home and die dead?”’ (Trinidadian MSM/PLHA).
Some PLHA seemed resigned to accepting neglect in health settings that are already seen as ‘very cold and rigid structures . . . that are not humane’ (Trinidadian PLHA). Long waits for services were described as common, although subsidised health care – regardless of presenting health condition – generally involves lengthy waits. For PLHA who are trying to lead productive lives rather than taking on a full-time sick role, this is disheartening if not stigmatising:
If I have an early morning appointment and I have to go to work at a particular time, how the hell am I going to do that? They’re not catering for me. I'm supposed to have a normal productive life, it doesn't balance off. I have to spend four or five hours waiting in a clinic to see someone when I have to go to work. . . . About 10 years ago, PAHO . . . did a study . . . show[ing] government where they are not providing the proper services to certain people. . . . The services are deplorable (Trinidadian PLHA).
Confidentiality violations: Practices for safeguarding client records are varied, selectively lax, and not enforced. This, providers suggested, has dire consequences for retaining PLHA in medical care:
I think one stigma-related aspect has to do with the confidentiality. A lot of the folks believe that way from experiences because information was leaked out in some way or another. Some of the folks, they don't trust to come out because of that. . . . We experience that kind of lack of confidentiality among medical professionals. . . . That's something that needs to be addressed, the confidentiality aspect, because once clients decide to come out they must have the assurance that whatever they disclose, whatever their problem, whatever it is, has to remain in confidence (Grenadian Provider).
Some confidentiality violations may stem from what participants described as Caribbean culture (‘We talk a lot’) and popular media programming that includes gossip. In health settings, there may be curiosity about the appearance of PLHA or a desire to learn who was unfortunate enough to become HIV infected. Participants are also suspicious of the motivations of doctors who make rounds and pronounce diagnoses publicly:
[Hospital staff] will spread the news. They tell other people that you are [HIV-positive]. The doctors come around and give you a peek. [T]hey will point [at] you and say, ‘This lady . . . she [has AIDS], and so and so there, she is so and so’. . . . The message keeps going forever. So everybody gets the news (Grenadian PLHA).
Beyond gossip or passing of information to protect coworkers, participants suggested there was purposeful leaking of serostatus in hospitals and among families and friends of providers. After all, nurses are neighbours and relatives of patients, especially in village communities. Thus, providers may be enacting what we term a covert duty to warn, especially when they are concerned an HIV-positive patient may be sexually active with family members or friends:
|First participant:||The culture is that I know she and she know me so he might be my husband, but the nurse on the ward might be his sister-in-law or my sister-in-law.|
|Second participant:||So information would flow.|
|Third Participant:||By the time I get to him, he would know that I was on the ward and I'm HIV because his sister-in-law would have told either her husband or somebody the husband know (Tobagonian Providers).|
Covert duty to warn may be enacted, given differences of opinion among providers about HIV/AIDS reporting:
|First Participant:||You would want to have the files . . . under confidentiality, but the whole thing about it is you see sometimes when it is open like that.|
|Second participant:||[interrupts] They do it by accident.|
|First participant:||When it's open like that, it tends to expose you and bring you to light because people are just being fooled all the time.|
|Second participant:||I understand what you saying, but then again I find to COVER UP, cover up.|
|Third participant:||We need to cover up.|
|First participant:||But then again . . .|
|Second participant:||[interrupts] She thinks the disease is supposed to be a reportable disease.|
|Fourth participant:||See, we need to understand that each individual deserves a right to privacy, that is where the human rights comes in.|
|First participant:||Yes, they have a right to privacy. I am not saying, the only thing I want you to understand because each individual have the right to privacy, does that mean that you have the right to kill six or ten people (Tobagonian Providers)?|
Given status loss and discrimination experienced in health care, some PLHA avoid provider settings near home or employment to avoid being seen by others and to manage further disclosure of their health condition. Indeed, some PLHA said they preferred to travel long distances to obtain care. Those with sufficient wealth travel to other Caribbean countries or farther for health care.
Variations in quality of care and nonstigmatisation
Although participants acknowledged that status loss and discrimination related to HIV/AIDS are common, we conducted negative case analyses for data detailing nonstigmatising care. Some PLHA acknowledged they received ‘most care’ (i.e. excellent service) in medical settings. However, nonstigmatised care seemed available in clinics specifically serving PLHA. In addition, PLHA reported feeling free from stigma in social support groups. In Trinidad, gay PLHA reported that their MSM social support group offered emotional support, community building, and empowerment. In appreciation of care they received, some PLHA model nonstigmatising care through volunteerism. An HIV-positive nurse compromised her own health to offer direct care to PLHA with tuberculosis because her colleagues would not. Some doctors have worked hard to demonstrate one can work in close proximity over a long period of time and not become HIV infected. Participants agreed that modelling compassionate care has been an effective approach to reducing stigma in health settings.
‘It's better than in the past’, but much work remains
Our analyses revealed that stigma taking the form of structural discrimination is not static. In general, medical professionals and PLHA suggest there is less stigma now than in years past; however, more anti-stigma interventions are needed. For example, providers noted governmental sponsorship of programmes is more visible, but public campaigns are most effective when government officials speak publicly about AIDS stigma. Participants wished more PLHA would go public as proof that one can live with HIV/AIDS and that testing should not be avoided:
I would emphasise that knowing your status is about life itself, it's a life empowering decision, whether HIV-negative, you can reaffirm your own reproductive health choices, whether you’re positive you can access treatment, it's a life empowering decision, it's not a death sentence. I want to take away this fucking death sentence (Trinidadian PLHA).
Over the years, providers have had access to training opportunities related to caring for PLHA. Most agreed that stressing basics about universal precautions and the importance of safeguarding patient confidentiality are important. Some, however, doubted stigma could be eradicated without affirming basic human rights, and perhaps decriminalising homosexuality. Regardless of legislative changes and reinforcement of patient rights, providers wished for professional introspection about the roots of stigma.