Abstract
Physicians’ ability to provide care to patients living with HIV/AIDS (PLWHA) in the Eastern Caribbean is influenced by economic constraints, sociocultural norms that govern interpersonal interactions, and the pervasive stigma linked to the disease. Although the economic environment determines national capacity to acquire various treatment and monitoring technologies, Eastern Caribbean physicians respond to practicing in a resource-limited setting by making choices that are influenced by the collectivist ethos that governs interpersonal relationships. Through qualitative interviews, the study finds that the social stigma associated with the disease requires physicians to “go the extra mile” to provide care in ways that allow PLWHA to protect their privacy in small, closely networked societies.
Introduction
In recent decades, HIV/AIDS has emerged as a disease of global significance, and from 1981 (when the disease was first noted) to 2012, about 75 million people have become infected and 36 million have died from AIDS-related illnesses. 1 The global financial investment in HIV/AIDS has been unprecedented for a single disease. 2 From 2002 to 2011, donor governments and organizations committed at least US$58.6 billion to the global HIV/AIDS response. 3 Thirty years after its emergence, the impact of the disease was still tangible in the Caribbean, with AIDS being the leading cause of death among people aged 20 to 59 years. 4 Despite global recognition and the magnitude of resources dedicated to the disease, the effectiveness of the response varies across countries and largely relies on local capacity. 5
By issuing guidelines specifically for “resource-limited settings,” the World Health Organization (WHO) recognizes the global lack of uniformity in monitoring and testing capacity among countries. 6 In the “Recommendations for Anti-retroviral Treatment for Adults and Adolescents in Countries with Limited Resources,” the WHO concedes that in venues referred to as being “resource limited,” there are fewer antiretroviral (ARV) drugs, and some laboratory tests are not always accessible. 7 -10 Although HIV/AIDS treating guidance is issued to “resource-limited” countries, the term resource limited is used in the health domain without a definition, except by implication or at an intuitive level. This article suggests a definition for resource limited as having less than what is required in one or more of the areas of financial, technical, or human resource capacity to provide care for patients living with HIV/AIDS (PLWHA). This study proposes that in the Eastern Caribbean physicians treating PLWHA practice in a resource-limited setting and focuses on how they cope with these resource limitations.
Although there have been studies focusing on physicians’ contribution to the HIV/AIDS response, and challenges faced by physicians in other underresourced settings, none of these have highlighted the Eastern Caribbean experience. 11 -14 Human health resource constraints imposed by HIV/AIDS in sub-Saharan Africa have been well documented and include mortality and morbidity among health professionals, work time lost as a result of the sickness and death of family members affected by the disease, and inability of public sector to match the remuneration of donor agencies in competing for skilled professionals. 15,16
The ingenuity, skill, and adaptive responses demonstrated by physicians in 6 Organization of Eastern Caribbean States (OECS; note 1) countries are important components of the HIV/AIDS response in this region. Physicians in the OECS function in similar health systems, practice in countries of geographic proximity with political, social, and cultural ties, rely on a centralized drug procurement system, and have a similarly coordinated response to the disease facilitated through various regional mechanisms. Travel and migration among the countries is common.
The OECS was established in 1981 to promote economic transformation, growth, employment, reduce poverty, and advance development. 17 Commitments to health are articulated in the treaty and work program. 17,18
The OECS reported its first HIV/AIDS case in 1984. 19 The first treatment for HIV/AIDS was the drug zidovudine (ZDV) which was approved by the US Food and Drug Administration in 1987 and initially offered as a monotherapy. 20
HIV/AIDS in the OECS from 1984 to 2012.
Source: OECS National AID Program Coordinators. Abbreviation: OECS, Organization of Eastern Caribbean States.
a Because of the HIV/AIDS-related stigma, there is significant underreporting of HIV/AIDS mortality. 69
Like many other resource-limited settings, the OECS governments did not immediately provide free of cost ARV drugs to their patients. Initially the only patients who obtained ARV drugs were those who could afford the out-of-pocket costs, and these patients obtained the drugs at annual costs ranging from US$7000 to US$10 000 (note 3). 21 For about 17 years after the diagnosis of the first case, ZDV was not widely available in all of the Eastern Caribbean countries until 2004, when funding assistance from the Global Fund to Fight AIDS Tuberculosis and Malaria made these purchases possible. 22 -24
Between 2001 and 2004, 3 of the 6 countries (St Kitts and Nevis, Grenada, and St Lucia) obtained World Bank loans for HIV/AIDS-related programs including the purchase of ARV drugs for amounts ranging from US$4.5 million to US$7.9 million. 25 –27
Methodology and Data Collection
Physicians in this study are either salaried professionals who provide care to PLWHA at government clinics , or private physicians who work on a fee-for-service basis and who treat PLWHA and other patients as part of their general practice. Thirteen physicians were included in the study. Seven government-employed physicians who provide care to people living with HIV in each of the countries were first identified by contacting the OECS coordinating agency for HIV/AIDS (1 for each of the OECS countries). An additional 6 private physicians were identified from 5 of these countries by snowball sampling. Snowball sampling was used as a secondary recruitment measure since there is no registry of all private physicians who provide care to PLWHA in the Eastern Caribbean. Physicians in this study have 3 to 22 years of experience in treating HIV-infected people. The government-employed physicians provide services in a public clinic and in some cases provide care in a team setting supported by a nurse, and private physicians provide care from private offices. Physicians in this study treated approximately 91% of patients receiving ARV drugs in the public system, which was verified when the number of patients seen by each physician was compared with the number of patients receiving free ARV drugs in each of the Eastern Caribbean country.
Interviews of approximately 60 minutes were conducted by telephone and were audiorecorded and transcribed. Respondents were asked to ensure that they were in a confidential location for the entire duration of the interviews. To enhance the credibility of the study, participants were provided with transcripts via e-mail and given the opportunity to provide amendments to the transcript. In instances where information in the transcript was unclear, the researcher submitted follow-up questions to participants and clarifications were obtained by telephone. Ethical approval for the study was granted by McMaster University’s Faculty of Health Sciences Research Ethics Board, and ethical clearance was obtained as required from the individual countries. Physicians signed a consent form which outlined the study’s ethical framework and indicated that their responses would be reported anonymously.
This research explores how the social environment influences care decisions by physicians in the Eastern Caribbean, and their experience of caring for PLWHA in conditions where all of the resources for treatment and care are not available. The qualitative method is preferred for this research, which is particular, experiential and interpretive. 28 As is typical of the qualitative process, this study explores meanings and processes and probes the response to problems. 29 The “framework analysis” approach is used in applied policy research that is contextual in focus by identifying the perspectives, perceptions, and needs of a population by developing explanations after identifying trends in the data. 30 -32
Consistent with the framework analysis methodology, the initial familiarization stage where the researcher reviewed the transcripts to identify the recurrent themes and main ideas was followed by an indexing stage where sections of the transcript are associated with specific themes. Subthemes were identified during the subsequent charting stage, which was followed by the final interpretation stage. 33 Specific challenges that physicians encounter are stigma in the profession, practicing medicine with insufficient resources, and practicing medicine in small societies. The challenges were met with a range of personal accommodations and responses by individual physicians in their efforts to assist patients in accessing care. (Figure 1).

Physicians’ responses to providing HIV/AIDS care in the Eastern Caribbean.
Results
Stigma in the Profession
There are mixed attitudes among the wider community of physicians about HIV/AIDS that concurrently reflect both a gradual shift toward colleagues being more accepting of patients living with HIV and evidence of a lingering resistance about being willing to treat this group of patients. A combination of rational and irrational fears about the disease perpetuates stigma within the profession. During training sessions, 1 physician observed attitudinal biases in other colleagues in the country against HIV-positive patients , especially some who do not regularly treat PLWHA. The physician hypothesized that stigmatized attitudes among physicians persist because physicians either see themselves on some level as vulnerable to the disease or have personal reservations about the perceived lifestyle choices of affected patients, which consequently prevent them from having an objective stance toward patients.
In particular, a topic like HIV for all intents and purposes is about sex. Certainly in the Caribbean, it is about sex and not so much about intravenous drug use. Doctors are sexually active people. Because there is so much emotion, so much fear, that sometimes took over what should have been a basic clinical training. Plus, you still have physicians who associate AIDS with homosexuality, who have issues with homosexuality, and who say “I’m not treating these kinds of people.” Well, it’s lovely and lofty to think that all physicians are these wonderful, nonjudgmental, unbiased, knowledgeable, skilled professionals. But that’s just not human nature. When we actually got into treating this disease in 1990s, some people used to be literally afraid to pass by or touch the patients. At that point in the care and treatment for HIV, people had not yet developed a level of comfort in managing the patients, and they were happy to relinquish control and transfer their patients to someone specializing in HIV/AIDS care. And it took a while for doctors to develop that confidence and to overcome their fear. It has become a lot easier in recent years. For some physicians, it is not so much that they themselves mind seeing the patients, but they know that if it is known in the community that they see patients with HIV, then their other patients might stop coming to see them because these other patients don’t want to share the waiting room with people who have HIV. Or maybe they’ll come to suspect that the physician has HIV and conclude that’s why he or she is willing to see people with HIV. Even the doctor becomes stigmatized after a while. For example, as clinical care coordinator for HIV/AIDS, in addition to treating infected persons, I was involved in things like awareness-raising among other health care workers and so on. Because of this public role, I was seen as the doctor who was looking out for HIV even though that was not the only thing I was doing. So, very soon, if a person came to the hospital asking for me, people might even start wondering why is this person asking for me. And a rumor could start just like that, about that person being HIV positive. I can tell you there have been times where people will call doctors certain names. It is not so much because you’re treating HIV patients, but it is when you start talking about issues of sexual orientation and transactional sex, when you start advocating on behalf of these groups, that you get labeled. People then begin to say that you are immoral and refer to you in derogatory terms. That has happened to me.
Providing Care Despite Insufficient Resources
Although conditions have improved over the past decade where each country can perform CD4 count tests locally and the first- and second-line ARV drugs are currently available in each OECS country, the resource limitations were previously daunting. Between 1984 and 2001 (before the country obtained a World Bank loan that allowed ARV drugs to be provided at no cost) 1 physician reported doing nothing more than “tabulate the demise” of patients because there was no access to treatment.
We have come a long way from having zero drugs. Until about 2002, we were basically just a counting system. We saw the patients; we counseled them about behavior change and not spreading the disease. We would give them some amount of prophylaxis for opportunistic infections, but we could offer them no definitive therapy. We were just accountants—counting up the number of positive patients, counting up the number of deaths. We were totally unable to afford antiretroviral drugs until we could buy the much cheaper generics. Back then for many years, we did not have our own CD4 counter. At that time, samples were sent privately to the private laboratory here and cost about EC $400.00, which therefore limited access to those who could pay or get someone to pay. We had some opportunities to send some samples to a laboratory in Barbados, but this was often a logistical nightmare with airlines. So we based our decisions on WHO clinical staging rather than based on CD4 and viral load levels. We therefore have on an academic level knowledge that you certainly do not have to die of AIDS as soon as someone tells you that you have HIV. But knowing that and having access to funds to offer that to our patients lagged by many, many years. And so the fears stayed for a lot longer. Because no matter what I as a doctor said, when you got told you have HIV, you had no access to treatment. Not having third-line drugs is the limitation—a big limitation. When the patients failed second line, then we have struggled to figure out what to do with them because third line is not readily available. If there is a test that patients can’t afford, we guess, and then treat empirically. But then you never quite know what the diagnosis is. So, I guess that's one of the things that happens in resource-limited settings, where you just cannot get the task done. It would make you feel exasperated. Because you know you see people in front of you – it would be a minority of people who have complications − but, the few that you see, you just, feel like it's unfortunate. Because you know if they were in a more wealthy country, the diagnosis would have been made long ago and they would have been fine. But, you know. I guess that's how it is. Sometimes it’s a little embarrassing to have to tell the patients we can’t afford third-line medication. We do give them options where they could get contacts overseas to get it. In some cases, they cannot afford to go overseas, so you just keep on working with what you have. Actually when HIV patients come to see me they don't have to pay. But that is because I took that decision. That was my decision. I wanted patients to have the choice to go to the physician they want to see. So I didn't want them to say, “I'd love to come to you, but I can't afford to pay.” My HIV patients, if they cannot afford to pay me, they don't have to pay. I have this one guy who sometimes, when he comes to get his medication, he might say, “Doc, I don't have bus fare home.” And so I give him bus fare home. Sometimes it's like that. There aren’t very many patients in this position—those who I would say really, really have no job. There are times when he comes to my office to pick up his medication, and there are times when he would say, “Doc, I haven't had anything to eat for the day.” And so I would give him $10 (note 6) to go get something to eat. When he has a job I would notice because he looks so much better. A lot of our patients are unemployed. Coming from an economically depressed background is a significant risk factor. Transactional sex, drug abuse, and poverty are interrelated. If you do not have money, you cannot do much. People have to make choices about their money. Some mothers use their money to send their children to school instead of spending it on food for themselves. They end up not taking their medication, because taking medication on an empty stomach makes them feel unwell. It’s complicated.
Practicing Medicine in Small, Tightly-Knit Societies
One physician, who was a member of an advocacy group and took out a personal bank loan to provide ARV drugs before the government program made them freely available, said it was “a matter of conscience.” This physician said the imperative to act is even stronger in a small society.
Because we were with people living with HIV and AIDS—and more importantly dying from AIDS—it is very difficult to know that treatment is available and you see people that you know, and patients that you know and see them dying and know you could do something and you choose not to. That’s a very uncomfortable position as a doctor to find oneself in. So that is why we responded as we did. I'd say in the initial years when we had no treatment to provide, it was one of the most demoralizing periods in my life. One of the saddest periods in my life, was when a little girl, who was exactly the same age as my daughter, died of AIDS. That “knocked my socks off” for a while. Because people don't understand the emotional toll that it takes to deal on a daily basis with patients, when at that time we had no medication. Even now, we don't for instance have any counseling system that facilitates those of us dealing with HIV to be debriefed or whatever. So, that is why I actually left the program for a while. I burnt out. I could not cope any longer with the stresses and strain. I totally burnt out. As we live in a small country, you do get very close to people. When you walk the streets you see the patients. When you go to church you see them, when you go wherever, it is hard to “get away from patients” in that way. That’s how it is in a small country. But there are still some people who, because all pharmacy staff will change from time to time, will be afraid that they would meet someone who is either related to them or who knows their family. So, in those cases we actually try to help them, sometimes by even picking up their medication and delivering it at the clinic. Rather than have them go to the pharmacy.
Discussion
Discussions about the special needs of resource-limited settings have focused more on treatment outcomes and less on the providers of care. Studies have demonstrated pharmaceuticals’ effectiveness in emphasizing the ethical imperative and the economic justification for providing treatment to resource-limited venues. 34,35 Early publications about the use of ARV drugs in sub-Saharan Africa addressed concerns about whether low-income countries had the infrastructural capacity to maintain continued and reliable delivery of antiretroviral therapy. 36,37 More recently, researchers have sought to demonstrate that treatment outcomes were equally optimistic in these settings as in more developed countries. 38 -42
There have been some similarities between the experience of health professionals offering care in remote settings and humanitarian contexts and physicians working in tightly knit, underresourced contexts like the Eastern Caribbean. These studies elaborate on the ethics of rationing limited resources, the challenges of knowing people in different contexts (overlapping relationships), and cultural mismatch between the provider and the patient. 43 -45 Although there were no reported ethical or moral dilemmas around the allocation of medication resources in the Eastern Caribbean, the ethical challenges are more likely to be around the issue of partner notification since contact tracing is practiced in the OECS for newly-diagnosed patients. Scholarly discussions on medical ethics in the Caribbean have not focused specifically on HIV/AIDS and notification obligations between sero-discordant couples, which is an issue that physicians in this study have encountered. 46 -48
Another culturally influenced aspect of the physicians’ response is expressed in their willingness to personally provide occasional cash transfers to economically disadvantaged patients or to forego financial remuneration for services provided. These expressions of assistance were favors that physicians provided on their own volition. This generosity is a reflection of the collectivist ethos and low power–distance identified by Hofstede, 49 where Caribbean cultures tend to score high in collectivistic tendencies and low in power–distance orientation. 50 The Eastern Caribbean countries share similarities in culture, seen in political histories, idioms, and health system structure, which are maintained through traditions of inter-island mobility.
A collectivist orientation suggests that responsibility for well-being extends beyond the individual and is expressed in the community’s willingness to extend assistance to an individual in need. A low power–distance suggests that people of high status do not accept that power should be unequally distributed in the society. This is demonstrated when physicians—professionals of high social status—are willing to go the extra mile to offer support, and also in patients’ willingness to admit directly to their physicians when they do not have enough money to pay. The extent to which this is evident is regulated by physicians’ personal attitudes toward HIV/AIDS. These responses and tendencies are not totally unexpected in “small” societies where people know each other and where social interactions tend to be more frequent. Populations in the OECS countries range from approximately 12 000 in the case of Nevis (note 7) to 203000 in St Lucia (note 8). 51,52
Limitations in health care resources that result in unsatisfactory working conditions are factors known to influence the migration of medical professionals from the Caribbean and other developing countries. 16,53,54 Increases in psychosocial stress, workload, and in some cases workforce morbidity have been a reality of the human resources response to HIV/AIDS. 55 According to the WHO, 3 OECS countries (St Vincent and the Grenadines, Grenada, and Antigua/Barbuda) are among the top 11 countries in the world with the highest expatriation rates to the industrialized Organization for Economic Cooperation and Development countries. 56 The Caribbean community (the intergovernmental organization encompassing OECS and other Caribbean countries) has expressed concern about the migration of health professionals from the region. 57
Accounts by health professionals in Nigeria and South Africa who lacked the necessary resources and were initially only able to treat opportunistic infections or reduce patients’ discomfort in their final days are comparable with the early experience of Eastern Caribbean physicians. 12,13 It is not unusual for physicians and health systems grappling with the enormity of the disease to devise unusual responses. A physician in Nigeria reported that his hospital would provide sleeping facilities for those who lived an entire day’s journey away and were confronted with the prospect of overnight travel after consultations with physicians. 12 In South Africa, health care providers’ empathy toward patients was rooted in a perception of their own vulnerability to the disease. 14
Just as economic constraints influence the ability to provide the tangible components of care, stigma has a pervasive influence on the conditions in which care is provided and the delivery and uptake of health services. Stigmatizing attitudes about HIV/AIDS are also perpetuated among Caribbean health professionals among whom there was a self-reported tendency to distance themselves from patients, blame patients for their illness, and disclose patients’ HIV status to colleagues for nonmedical reasons. 46,48,58 These attitudes were predictably absent from the physicians in this study. However, physicians who treat this group of patients are subject to global prejudices directed toward people living with HIV because of assumptions about the disease. 59,60 This “secondary stigma” or “courtesy stigma” directed toward people who do not themselves have the disease, but who are associated with patients, reduces caregivers’ sense of well-being and likelihood of continuing to work with this group of patients. 61,62
Stigma is expressed within local power, cultural, and social contexts. 63 The stigma and discrimination from which physicians try to shield their patients by offering services in their private offices is a credible social phenomenon for people living with HIV. In a survey that included 3 Eastern Caribbean countries, key informants who were HIV positive revealed verbal and other forms of abuse, avoidant behavior, threats of arrest or deportation, and exclusion from social interaction and employment. 64 The survey also found the main perpetrators of stigma and discrimination were family, someone known to the person with HIV/AIDS, young people, specific health workers, individuals in the school environment, the workplace, or general public. A study in another Caribbean country—Jamaica includes accounts of people with HIV whose HIV test results were divulged to the community by hospital workers and who see secrecy about their HIV status as a way of avoiding discrimination. 65
Summary
Physicians in the Eastern Caribbean treating PLWHA recognize that they were “only able to work with what (they) have,” and have reported feelings of frustration in recognizing that patient needs sometimes exceed local health system capacity. The economic environment and cultural context (including stigma and discrimination) have a ubiquitous influence on the practice of medicine. Physicians are first constrained by the availability of resources that restricts their prescribing options in second-line and third-line ARV drugs and the range of monitoring tests that can be performed on patients. Second, the cultural environment that is predominantly a collectivist orientation and characterized by low power–distance in tightly networked societies allows physicians to empathize and identify with patients. In the Eastern Caribbean, physicians’ ability to treat PLWHA is influenced by the medical resources at their disposal, the sociocultural context in which they practice, the pervasive stigma associated with the disease, and how they see themselves in relation to these determinants.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
