AIDS stigma in health services in the Eastern Caribbean

Authors


Address for correspondence: Scott Edward Rutledge, School of Social Administration, Temple University, 1301 Cecil B. Moore Ave., Philadelphia, Pennsylvania, 19122 USA
e-mail: srutled@temple.edu.

Abstract

Stigma obstructs HIV/AIDS prevention and care worldwide, including in the Caribbean, where the prevalence of AIDS is second only to sub-Saharan Africa. To contextualise the experience of AIDS stigma in health services in Grenada and Trinidad and Tobago, we conducted eight focus groups with 51 people living with HIV/AIDS (PLHA), families, and service providers. Quasi-deductive content analysis revealed consonance with Western and Northern conceptualisations of AIDS stigma wherein stigma is enacted upon marginalised populations and reinforced through psycho-sociological processes comparing ‘in’ and ‘out’ groups. Socially constructed to be physically contagious and socially deviant, PLHA are scorned by some service providers, especially when they are perceived to be gay or bisexual. PLHA and providers identified passive neglect and active refusal by hospital and clinic staff to provide care to PLHA. Institutional practices for safeguarding patient confidentiality are perceived as marginally enforced. Interventions are needed to reduce provider stigma so the public will access HIV testing and PLHA will seek treatment.

Introduction

AIDS stigma poses a barrier for HIV/AIDS prevention and care. Many persons living with HIV/AIDS (PLHA), and those concerned that they might be HIV-infected, fear judgment within health services and avoid seeking treatment or getting tested (Worthington and Myers 2003, Mawar et al. 2005, Kaplan et al. 2005, Taylor 2001, Madru 2003, Fullilove and Fullilove II 1999, Goldin 1994, Herek et al. 1998, Ogden and Nyblade 2005). Although long recognised as an impediment to service provision, there has been an increase in scholarship documenting AIDS stigma, and increased attention to developing stigma-reduction interventions (Brown et al. 2003, International Center for Research on Women 2006), including public information campaigns (Joint United Nations Programme 2002), strategies targeting health-care providers (EngenderHealth 2004), and synergistic multilevel approaches (Klein et al. 2002).

This article analyses AIDS stigma in health-care service provision in Grenada and Trinidad and Tobago. Using transcripts from focus groups conducted with PLHA, families and service providers, we employed a quasi-deductive qualitative approach to determine the fit of a social cognitive framework and to contextualise AIDS stigma in health services.

Caribbean context of AIDS

The Caribbean has the second highest AIDS prevalence in the world (Joint United Nations Programme 2006). Many smaller Caribbean nations report nascent epidemics; however, epidemics in Haiti and Guyana are generalised. ‘The Caribbean’ encompasses a variety of countries and territories with varying degrees of postcolonial autonomy and influences from African and East Indian diasporas (Inciardi et al. 2005). Over 40 million people live on thousands of islands. Given the region's complexity, comprehensive HIV/AIDS surveillance is difficult.

Religion is important in maintaining the Caribbean's social conservatism (Inciardi et al. 2005). Christianity is dominant, but some countries have sizable populations of Hindus, Jews, and Muslims. African spirituality is also practised. Although the Pan American Health Organization (PAHO) and the Caribbean Epidemiology Centre (CAREC) emphasise that HIV transmission occurs primarily through heterosexual sex in the Caribbean, AIDS had its genesis there among men who have sex with men (MSM). MSM HIV transmission is underestimated because of widespread homophobia (Pan-Caribbean Partnership 2002), anti-gay violence (Carr 2003, Schleifer 2004), and criminalisation of homosexuality (Department for International Development et al. 2005). Because of the region's social conservatism, which fuels anti-homosexual sentiment, it is crucial to integrate religiosity in studies of AIDS stigma (Genrich and Braithwaite 2005, Brathwaite 2001, Canadian International 2004).

Despite similarities, Grenada and Trinidad and Tobago are quite different countries. Grenada is smaller and poorer than Trinidad and Tobago; disparities between wealthy and poor are less pronounced in Grenada. Trinidad and Tobago is more ethnically diverse, with roughly equal numbers of citizens descended from the African and Indian diasporas whereas about 90 per cent of Grenadians are descended from Africans. Similarities include governmental systems, CARICOM membership, and histories of British colonisation. Responses to AIDS are approached from a regional, multisectorial perspective, and governmental and nongovernmental organisations (NGOs) play roles in the AIDS response in both countries. CAREC (2004) developed a regional health promotion approach for addressing AIDS stigma, and anti-stigma work is also conducted by other organisations (Caribbean Task Force 2000, CARICOM Secretariat 2005), including programmes by and for PLHA.

Conceptualisations of stigma

Multilevel dimensions: Goffman's seminal work (1963) compiled ways people with disabilities were ‘marked’ and bore a ‘spoiled’ identity. Even when visual stigmata are not evident, PLHA may feel like biohazards (Rutledge 2002) or contaminated and untouchable (Chapman 2000), given the discomfort others express when near them. Accordingly, fears of physical and social contagion spawn a distancing from persons suspected to be HIV-positive. When accompanied by anger towards or contempt of PLHA for having a disease associated with deviance, this avoidance may escalate to maligning or physically harming PLHA (Malcom et al. 1998). Beyond prejudice and discrimination directed at individuals, cultural factors – reinforced by formal and informal power structures – set the foundation for structural discrimination. Reflecting conservative religious values, social discourse suggests PLHA are undeserving of care and compassion because they ‘brought the disease upon themselves’. Such views may prompt governments to enact discriminatory and coercive policies (e.g. quarantine, mandatory testing, tattooing/branding, employment restrictions, denial of immigration) (Herek et al. 1998, Malcom et al. 1998, Hansen and Broce 2001). In turn, these structural influences reinforce cultural responses (Goldin 1994). For example, some religious institutions cast out PLHA; families and neighbours may shun, injure, or kill PLHA (Herek 1999a); and neighbourhoods campaign against locating AIDS-related services nearby.

Health services as locations of power: Parker and Aggleton (2003) assert that studies of stigma should go beyond descriptive examination of static expressions of attitudes and should explore more deeply stigma's function in maintaining social order by examining intersections of culture, power and difference. They suggest that, along with Goffman, social science should accentuate the writing of Foucault (1977, 1978), whose work argues that societies draw upon both formal and informal power to create and reify knowledge, and discredit difference to achieve social control. In our view, for societies to promote visions of what is desirable, particularly as related to sexuality and family structure, social discourse defines standards for sexual behaviour. To maintain standards privileging abstinence followed by heterosexual monogamy, conservative pundits exploit AIDS epidemiology to reinforce negative images of ‘alternative’ sexual relations. They suggest it is the ‘will of God’ that homosexuality, marital infidelity and promiscuity lead to AIDS. In turn, activists have charged that AIDS is genocide, if for nothing else than to secure a place at scientific and welfare planning tables. However, these activist voices have been often interpreted as purposively representing the fringes of society, including sexual minorities, sex workers, the poor, and immigrants, who, while perhaps entitled to some degree of medical care, should continue to be marginalised for not conforming to societal standards.

Health-service providers are gatekeepers for medical treatment and prevention programming and may have considerable agency to either uphold or resist social discourse about AIDS. However, under economic threat for diverting in message or practice from funding programming proscriptions that can threaten organisational, worker, and client livelihoods, health-service providers may struggle with toeing the line in disseminating prevention messages and establishing eligibility criteria for dispensing resources. And, of course, as citizens themselves, providers contribute to social discourse about AIDS. Thus, understanding providers’ roles in stigma appears crucial.

Alternative perspectives on stigma

Do policy and cultural responses shape stigmatising institutional practices for health services for PLHA? Castro and Farmer (2005) argue that stigma may not be as big a barrier to service receipt as widely believed because it is the perception of the unavailability of services that keeps people from attending rather than discrimination. They suggest that when quality HIV care was introduced in Haiti, stigma dissipated and HIV testing increased. Contrary to popular perception, antiretroviral drugs are increasingly available in the Caribbean. The degree of publicity about their availability is unknown, but drugs are available in Grenada and Trinidad and Tobago. Nevertheless, many PLHA there avoid local clinics and travel to clinics in other cities or even other countries. Some forego treatment altogether rather than risk being stigmatised.

Green's (1995) query about whether attitudes toward PLHA are as stigmatising as PLHA perceive them to be suggests that the general public may be more open-minded than PLHA expect. Regardless, perceived interpersonal insecurity and initial rejection may lead to enduring reductions in self-esteem (Kang et al. 2006). More optimistically, however, perceived and internalised stigma may lessen over time, especially with meaningful social support (Alonzo and Reynolds 1995).

Perceptions of severity and expectations aside, it is evident PLHA are treated badly within their communities and anticipate being treated poorly within medical settings. There is also evidence that PLHA are stigmatised in medical settings worldwide (Adebajo et al. 2003, Green and Platt 1997, Yang et al. 2005, Surlis and Hyde 2001). Moreover, policies and practices in health settings are problematic, if not intentionally stigmatising. For example, an NGO report (Isaacs et al. 2000) noted that in Trinidad and Tobago medical records were marked on the exterior if the patient was HIV-positive; even without this cue, nurses and visitors were able to infer a patient's serostatus by the isolated bed location.

Caribbean health professionals have mixed feelings about contact with PLHA (Rutledge and Abell 2005). Some hold condemning attitudes toward PLHA; most are intolerant of MSM. Paradoxically, one study (Abell et al. 2007) indicated health providers who are required to have physical contact with PLHA may be more condemning. Although providers should be acquainted with contagion for various illnesses and trained to use universal precautions, Green and Platt (1997) concluded that fear of contagion was the primary source of AIDS stigma in health-care settings in Scotland. They, like others, argued optimistically that stigma would decline as more professionals were trained to work with PLHA. Unfortunately, disentangling fear from loathing seems to be a continuing struggle more than a decade later.

Social cognitive framework

This research explores the fit of Link and Phelan's (2001) four-component social cognitive stigma framework for AIDS in an eastern Caribbean context. First, according to their model, through everyday processes of social comparison, people distinguish and label differences, including gender, race, and class. The second component involves associating human differences with negative attributes, or constructing stereotypes. The third component suggests that people use evidence of stereotypes to separate ‘us’ from ‘them’. From an evolutionary standpoint, this has served a utilitarian function of protection (Kurzban and Leary 2001). From a social psychological framework, group memberships form bases from which we judge others by comparing their attributes to ours. This process of binary labelling of ‘us-versus-them’ as ‘good/bad’ or ‘worthy/unworthy’ appears to be universal (Devine et al. 1999, Ogden and Nyblade 2005) and has influenced the provision of social welfare since the Middle Ages. Link and Phelan (2001) suggest most conceptualisations of stigma do not describe status loss and discrimination, their fourth component. Here, stigma is most obvious. Although stereotyping and classifying group memberships may be subconscious processes, enacting stigma is behavioural and generally results in losses for the stigmatised, including social standing and career opportunities. In summary, Link and Phelan suggest the term stigma be applied when elements of labelling, stereotyping, separation, status loss, and discrimination co-occur in a power situation (2001: 367).

Research methods

We developed an international collaborative to contextualise AIDS stigma in Trinidad and Tobago and Grenada. We sought to explore Western/Northern propositions about stigma and to contextualise reception of PLHA in health services. A qualitative approach seemed best suited for exploring experiences of PLHA and their interpretations of stigma.

Participant recruitment

We developed a list of organisations to assist us in recruitment from contacts in health services. We purposively sampled providers, service recipients, and families, including politically important cases (e.g. administrators), and used homogenous sampling for the focus groups. We developed a network to identify hidden groupings of PLHA by accessing community leaders, activists, academics, and employees of governmental organisations and NGOs. Participants were provided with the local equivalent of US$25 as an incentive.

Focus group process

We pretested a script derived from concepts from Link and Phelan (2001) and Herek (1999b) with international students from the Caribbean living in the United States to ensure questions were relevant. This script was utilised to enhance consistency across groups; ample time, however, was allotted for deviation to maximise relevance to participants and serendipitous discovery. We conducted eight homogenous focus groups (51 participants) lasting 90–120 minutes with PLHA, families, and caretakers; MSM; and providers.

Protection of human participants

To obtain human subjects’ approval, we consulted with three participating universities, ministries of health, and NGOs. To prevent threats to anonymity posed by using local personnel, the first two authors (white men from the North) facilitated the focus groups. Although one might argue an insider perspective is important in facilitating discussion, consultants suggested that participants would be more candid with outsiders because they would worry less about privacy concerns. As advised, we did not collect demographic information. Thus, we include only country and basic descriptors of participants quoted. Focus groups began with informed consent.

Data analysis and interpretation

Following transcription of audio-recorded focus groups, Caribbean associates reviewed transcripts to verify colloquialisms. Using Atlas.ti, we conducted two stages of data analysis using a quasi-deductive approach (Patton 2002), which is a general orientation to holistic content analysis emphasising seeing data as derived from existing conceptualisations of phenomena. First, we coded the transcripts inductively to discover unanticipated themes that might have emerged when discussion veered away from the script. In the deductive phase, we analysed the transcripts using codes derived deductively from our guiding conceptualisations. To maximise credibility, reliability, and quality for empirical studies using qualitative approaches (Padgett 1998), we employed triangulation in sampling (PLHA, families, professionals), data analyses, and authorship. We kept an audit trail and held ongoing peer debriefing. We conducted negative case analyses to determine how these differences challenged or embellished theory. Prolonged engagement and participant checking were not possible given funding and IRB restrictions, which limited contact with participants to once, and disallowed collecting contact information. We strived to maximise reliability by reviewing analyses with Caribbean colleagues and presenting at international conferences.

Results

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.
Second participant:Right.
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.

Discussion

Analytic fit with Western/Northern models

Our analysis revealed Link and Phelan's (2001) framework is useful for understanding enacted and felt AIDS stigma in medical settings in Grenada and Trinidad and Tobago. Providers and PLHA alike noted that everyday differences, including gender and class, are assigned negative attributes in the context of AIDS. Further, subaltern groups – gay/bisexual men, drug users, and sex workers – are stereotypically linked to AIDS. The AIDS literature has long reflected a history of blaming these groups for the pandemic (Schiller et al. 1994). The public health practice of constructing risk groups reinforces social constructions of such groups as were created and maintained by socially conservative societies, such as those in the eastern Caribbean.

Our experiences support the notion of universality of ‘separating us from them’ as integral to stigmatisation. PLHA made it clear that they experienced providers judging them as being worthy or unworthy of care based on religiously-oriented presumptions of innocence or guilt in becoming HIV-positive. AIDS is socially constructed to happen to those who ‘don't behave’, and is passed on to innocent wives and children.

PLHA suffer status loss and individual and institutional discrimination perpetuated by multiple levels of power holders, including religious leaders, neighbours, and service providers (Link and Phelan 2001). The most egregious examples were of outright refusal by providers to care for PLHA in hospitals. It was far more common for providers to neglect patients and breach confidentiality through institutional practices. As many participants noted, it seems a simple matter to require universal health precautions for all patients so as not to bring attention to PLHA. However, additional work is warranted to assist providers concerned about occupational exposure. As providers in workshops suggest (reported elsewhere, see Rutledge and Abell 2005), consistently modelling compassionate care, including touch, has helped them to see it is possible to be humane and not be exposed to HIV on the job. It is more difficult, however, to diminish condemnation of PLHA when providers are worried about patients not disclosing their serostatus to sexual partners, some of whom may be related to providers.

Is power central to stigma?

Our focus on gatekeepers as central to the power behind stigmatising processes has obvious logic. Deacon (2006: 421), however, reminds us that ‘anyone can stigmatise, no matter what their social position’. The poor can discriminate against the wealthy; patients can scorn physicians. If, however, one has high social standing, there may perhaps be ‘more to lose’. This may be why participants wished more HIV-positive Caribbean celebrities would go public. If such a person can continue to thrive, the power to stigmatise is diminished.

Nevertheless, the level of stigma and consequential harm one human is able to inflict upon another seems far greater when the stigmatiser has power over the stigmatised. Medical practitioners have long occupied positions of power to enforce social order (Mechanic 1995) and have been revered by many, obviating their perceived need to justify decisions to patients. Religion seems to be a central force behind stigma, at least in our experiences in Grenada and Trinidad and Tobago. It is important to recall that providers are neighbours, relatives, and church members rather than simply detached medical professionals. In fact, it is perhaps the social construction of HIV/AIDS as punishment meted out by God and the references to homosexuality as immoral that may have given licence to some providers to act badly toward PLHA. AIDS stigma may be a response to a professional obligation to uphold the moral order and defend ‘what is most at stake . . . in a local social world’ (Yang et al. 2007: 1525).

Indeed, one historical role of medicine has been to promote positive social hygiene. For example, physicians judge the legitimacy of patients’ claims of illness (Cockerham 2000) and offer health education about appropriate lifestyles, often under governmental directive (Turner 1996). Thus, the power of medicine and healing may go unchecked. In postcolonial settings, however, outsiders might imagine that formal systems of power, such as medicine, would bear the public scrutiny accorded to remnants of the colonial past. Regardless of whether there is or could be organised efforts to overhaul or re-envisage service delivery, one might anticipate stories of AIDS activism wherein PLHA and their advocates respond to stigma forcibly (e.g. as occurred with ACT-UP in the US). In fact, when individuals recover from the brink of death to revitalised life on ARVs in the context of profound stigmatisation, as in post-apartheid South Africa, activism may spring forth (Robins 2006). However, PLHA may play the part of meek patients, trying to avoid being stigmatised and seeking care only when urgently required, and thus feeling powerless. We found only one description of a patient advocate reacting to a stigmatising provider. However, gay participants suggested ‘suing their ass’ when violations of confidentiality had occurred. There are undoubtedly more stories of responding to stigma than we uncovered. Although our focus groups included AIDS advocates – and there are regional advocacy organisations of PLHA – it may be such stories remained untold because we did not prompt them. This would be a useful future inquiry.

Although women's health needs were long neglected in AIDS research, the growing stigma literature has begun addressing gender differences in enacted stigma. Our findings suggest HIV-positive Caribbean women may be more stigmatised than heterosexual men. This seems consistent with the notion that women are generally held to a higher social standard than men in spite of social marginalisation and political disenfranchisement. Although recent discourse re-melds AIDS with homosexuality by linking HIV among women with men on the down low (MSM who do not identify as gay or bisexual and maintain secrecy about their same-sex sexual activity from female sex partners), media have long portrayed women at risk for HIV-infection as deviant, kinky, or unlucky. In the 1980s, media accounts blamed HIV-positive women for having ‘poor partner selection skills’ (Patton 1994: 98). Although often seeking to avoid blaming the victim, some focus groups reinforced these themes while suggesting women should try harder to control their men.

Limitations

Views on sample size vary; some may find our sample small. Additional contacts over time might have increased depth, but were not possible, given funding restraints. One-on-one interviews may have afforded in-depth exploration. Focus groups, however, are thought to provide a greater range of dialogue. Although we conducted groups in several locations in each country, most participants came from urban settings.

Future work

A multilevel strategy is needed to effectively sustain reductions in AIDS stigma sparked by public information campaigns. Anti-stigma interventions could be focused at the level of professional education, on mass media and social marketing, and through legislation that protects PLHA from discrimination, and holds providers accountable for respecting patient rights. Participants’ perspectives about action steps are in harmony with the Caribbean Regional Strategic Framework for HIV/AIDS that includes anti-stigma work as part of advocacy, policy development, and legislation (Pan-Caribbean Partnership 2002). On a cautionary note, enacting strict laws to protect PLHA does not necessarily mean stigma and discrimination will dissipate, as is the case in China (Yang et al. 2005).

Link and colleagues (2004) emphasised that emotional reactions were underrepresented in Link and Phelan's 2001 conceptualisation. Providers experience a range of emotions about their patients that probably influence service delivery. Moreover, providers may suffer ‘courtesy stigma’ (Snyder et al. 1999) if others disapprove of their work with PLHA. Thus, additional work is needed to identify how emotional reactions mediate the enactment of stigma. We believe our Awareness/Acceptance/Action Model (AAAM; Rutledge and Abell 2005) holds promise in raising consciousness about stigma. The AAAM is designed to assist providers in sorting through feelings about PLHA, fears about contagion, and potential disgrace associated with doing AIDS work.

As more anti-stigma interventions are mounted, it is crucial to assess the potential harm of their delivery by persons yet to sort out their own proclivity for enacting stigma. Also, it is vital to establish instruments to monitor intervention success. Most stigma measures are currently taken from the perspective of PLHA or the general public. Nyblade and MacQuarrie's (2006) compilation of stigma measures urges comparisons across contexts. We hope our research will be useful in creating such measures for service providers.

Acknowledgements

Funding was provided by a Florida State University Council on Research and Creativity Planning Grant. We thank the 51 participants. Partner organisations in Grenada included Agency for Rural Transformation, Hope-Pals, the Ministry of Health, National Children's Home, the Red Cross, and St. George's University. Organisations in Trinidad and Tobago that assisted include Community Action Resource (CARe), Caribbean Regional Network for Persons Living with HIV/AIDS (CRN+), Cyril Ross Nursery, Friends for Life, National AIDS Coordinating Committee, Supportive Improved Life Centre, Tobago AIDS Society, and the University of the West Indies. We thank research assistants John Balzarini, Jill Chonody, Shelly Gillum, Ambah Graham, Allyce Hefflin and, especially, Nina Nelson.

Ancillary