Stigma in AIDS Nursing Care in Sub-Saharan Africa and the Caribbean

Treating all patients equally

Participants asserted that all patients received similar nonjudgmental attention from professional care providers. As a South African nurse pointed out, “We are here for a patient and we have to nurse them in totality irrespective of race, color, creed, or their medical conditions. We have to nurse them equally.” Similarly, a Kenyan nurse said, “Whether they are [HIV] positive or not, you have to make sure that you treat them.” HIV-positive patients were usually treated similarly to those with other infectious diseases, and would only be put in “a secluded area [if they had] diarrhea, or they are suspected of having tuberculosis, that’s the only way. Otherwise they will be among any other patient on the ward.”

A Ugandan focus group member recalled the changes that had occurred to nursing care since the beginning of the epidemic:

Initially we used to segregate these patients; many of them would be taken as infectious. For example, we would always be suspicious of TB [tuberculosis] and other diseases, but these days, unless if one is worrying we always put them together with other patients so that they also feel that they are people like others.

A Jamaican nurse stated that sometimes she double gloved; however, this was done because of the procedure and not because the person had HIV:

You wouldn’t necessarily put on two gloves to go to that patient, because I mean, but for every patient who has body fluids, or I need to tidy them and they have a lot of mess, I put on two gloves, so nobody is saying, “Oh, this person is HIV positive because [the] nurse put on two gloves.” No, it’s because of the procedure that I am doing, and what it requires, you understand?

Treating HIV-positive patients differently

Despite the assurance that HIV-positive patients were treated equally, a number of comments suggested that in reality, nurses sometimes made decisions about nursing care based on the appearance of the patient or knowledge of his or her status:

You get a hunch by looking a lot of times. I have seen it happen a lot of times. You say, “Careful, that one looks suspicious,” even though we are not supposed to do it, but it’s just a hunch.

Similarly, another participant stated, “I go around with them just like any other, especially when they are newly diagnosed and they appear normal just like anybody else.” A Ugandan nurse was more direct in her comment: “We usually don’t put on gloves while working on those without HIV, and [for] those who are HIV positive we usually put on gloves.”

When a patient was known to be HIV positive, nurses often took extra precautions to protect themselves. The use of gloves and “taking extra care” in carrying out nursing procedures were the most common precautions mentioned: “[If] they are very ill, they have open wounds, or like, let’s say they have something like scabies or something like that, then you are going [to] be extra cautious, like you wear double gloves or gown.” A Ugandan nurse stated that patients who were “HIV positive are given detailed attention,” whereas “those who are found HIV negative are given preventive measures.” Similarly, a Kenyan nurse stated, “With the AIDS patients you are taking much more precautions.” A South African nurse said,

If I know about the condition of the patient, I will treat them differently because at times we are talking about the universal precautions. I have to always be careful, put on the gloves and the spectacles in order to prevent the virus.

Ugandan nurses shared several examples of different precautions for HIV-positive patients: “We take more precautions, [are] always careful while handling the sharps, [and] we are required to use gloves.” “For mothers who are in labor, the case is not the same because for positive mothers you have to take precaution not to infect yourself.” Similarly, a Jamaican nurse expressed the different approaches to care based on HIV status:

The only time it would be different if you know they have AIDS and you know [they] might have sores on the body. Taking their [blood] pressure you have to cover your hands with something before you put [the cuff] on; that is just to prevent any transfer. But separate and apart from that, if I am to handle any body fluid I use gloves.

Some of the differences in care reflected nurses’ compassion and sensitivity to the needs of PLWHAs. The long-term chronic nature of the disease, within a context of stigma, resulted in some differences in care provided to patients who were HIV positive. Participants described many of the types of physical care, including nutrition, provision of antiretrovirals, and the prevention of infections, that they provided to patients with HIV. The emotional impact of having HIV and AIDS was also highlighted. A Kenyan nurse pointed out that HIV is a “disease [that] affects the person psychologically, spiritually, and even socially.” Because of this reality, nurses emphasized the psychological support they provided for these patients: “[They] need more emotional support.” A nurse from Uganda suggested, “Those patients with HIV/AIDS are traumatized. They need more moral support, because they come with a lot of fear; they feel isolated.” Additional psychological support was one of the key differences in providing care for patients with HIV: “The main difference is going to be in the psychological aspect of their lives, the stigma prevention and that, so they are going to need emotional support and so on.”

The absence of care

Several nurses mentioned that the absence of care or the placement of a patient on the unit might identify him or her as HIV positive, and consequently could influence the level of care. A Jamaican nurse suggested that the neglect of a patient could quickly identify him as HIV positive:

It doesn’t take much for you to step on the ward and see that this patient is unique in some way. You go to the bed for example. They are in a room and you go there. You will see the tray with the food on the table or wherever they put it. You will see the bedpan not emptied. You just know that there is very little contact with the client, and as I said before, except what [care] is absolutely necessary.

Similarly, a South African nurse said,

Sometimes I feel the people think, “Okay, this is a HIV-positive patient. He is going to die now”—or he’s terminally ill at that time, that they don’t give the care as they must care . . . be they didn’t turn her [over] this time.

A Jamaican nurse had been distressed by the lack of care she had observed for PHLWAs: “The places that they are placed in the ward [were] usually at the end of the ward, and . . . there’s hardly much association with them.” Another nurse recounted a situation when a patient was placed in one area of the unit and was later moved to the back when his HIV status became known:

I remember we had this gentleman, he was twenty-six. Big strapping nice young-looking man, just come in for a very high fever and [it] wouldn’t go away and [he] was having diarrhea. He kept on having [a temperature of] one hundred three or there about, and when they did the rapid [test] he was HIV positive, and he was placed at the back because they weren’t sure why he was positive and he was quite healthy looking.

The location of patients on the unit in relation to HIV status was also known to families. A Jamaican nurse had to reassure relatives that “not everybody who is put there in a room is HIV positive.” Although some of these findings provide evidence that nurses made efforts to treat all patients the same, a few of the narratives suggest that stigma and discrimination continued to influence the caregiving provided by nurses.

Institutional factors influencing care

Nurses mentioned many institutional factors, including resources, physical space, and support, that influenced their ability to care for their patients. More than half of the nurses at all sites spoke about the challenges created by the lack of resources to provide safe patient care. Nurses felt that both physical and human resources were necessary to carry out their nursing work. A Jamaican nurse argued that the provision of adequate supplies to implement universal precautions was essential, yet materials were not always available:

It’s needed. It’s not a want, it’s a need for everybody—we’re supposed to have universal precautions for everybody. But I mean it’s not really [available]. With the turnover of patients they don’t really have that amount of supply.

A nurse who worked in a rural setting in Uganda commented on the challenges related to ensuring adequate supplies in rural areas:

We have a hardship in sterilizing the instruments which we use. We live in rural areas where there is no electricity and so we have to use paraffin to heat up these tools. However, this is also becoming very expensive, and there are few equipments, so it’s hard to attend to two mothers in labor at the same time. They can start pushing at the same time yet you do not have enough instruments to use.

Resources also included the availability of adequate medications and treatments to care for patients. A South African nurse spoke about her feelings of failure when she did not have adequate supplies to carry out the treatment that she knew was essential for her patient:

The most difficult is when I fail the patient. . . . I really feel bad sometimes if when they come to the clinic and they complain of such a thing then we don’t have treatment to treat that complaint that the patient is coming with. . . . I feel bad sometimes. I always feel that they must always, when they come to the clinic they must get treatment and whatever that we should offer to help the patient.

Several participants commented on the shortage of human resources to carry out safe nursing care. A Ugandan nurse stated, “We need more workers. The nurses on duty are very few, and this means we need more voluntary health trainees to offer more support.” Similarly, a Jamaican nurse commented on the difficulty in finding adequate time to provide support and counseling for patients:

As it is right now the workload is such that you don’t get to spend the time that you could. If I sit in here probably with a patient for an hour, or patient and family for an hour, people start banging at the door because they figure that you in there with that patient too long and they want to come in. So you know that is lacking.

Adequate physical space necessary to maintain confidentiality was another important requirement for participants to carry out care of patients with HIV. One of the Kenyan nurses spoke about the challenges to confidentiality posed by working in space that was inadequate:

Most of our facilities, even the rooms we use for counseling, sometimes compromise the confidentiality itself, and so to me the confidentiality is really marked more when it comes to HIV and AIDS. The only part remaining is that we are still having a challenge when it comes to space and it compromised the level of confidentiality, but still we can improve.

A Ugandan nurse shared a similar concern about the lack of physical space and the impact on maintaining confidentiality: “We do not have operational space! We need special rooms to do private counseling. This requires heavy construction that requires money, and now the government can’t take quick action to this effect.” A Kenyan nurse commented, “[If] we had some more spaces and more beds for the patients it would be better.” In addition to the amount of space for care, the positioning of the space could provide challenges to nursing care:

They even fear queuing [in] the line so you will get some of the patients around the window and tell you, “Sister, you can give me the drugs.” It’s like they don’t want people to see them, and if we can have a place that not everybody is seeing them or such.

In addition to resources, nurses spoke of the importance of receiving support from their organization in the provision of care. One Jamaican nurse manager shared the following:

I believe that encouraging and counseling your staff first is important because we are providing the care to the patients. We need to encourage the nursing staff, and you know, counsel them, talk to them, have sessions with them, and that is not being done.

A South African participant shared a similar concern about the lack of support she felt from management. From her perspective, management only visited the ward when they were following up on a mistake. She provided a compelling argument for more support from management:

They [management] should come close to us, and sometimes just give themselves time and work with us and see how, how do we relay, how do we function because of this stuff. So every time they come [they] always look for a mistake or something they would focus on. . . . When they come here, they come yelling at you as personnel here; they do not have good approach.

Another South African nurse also shared a concern that her employer was “ignoring us, the people who are working with the HIV-positive patient. . . . You end up in a day having out of ten people that you saw, six are HIV positive. Imagine how you feel?”

Stigma associated with disclosure

Nurses were often pressured by relatives to disclose patients’ diagnoses, despite understanding the need to maintain confidentiality. A Jamaican nurse recalled a patient asking, “‘Nurse, when they [relatives] come and look for me, are you going to tell them what is wrong with me?’ I said, ‘No, that would be your decision.’” Although most HIV-positive patients disclosed their status to the health workers, at times they kept the diagnosis secret from their own relatives. A number of the participants explained the challenges they faced in the provision of care when patients had not told relatives their status, as in the following example:

You are unable to explain the process to them so because of this the patient is ill and . . . is not improving, and you can’t explain to them that although the patient is getting ill this is the situation, you know, explain to soothe the whole emotional thing. They just believe that it is you, and especially when the patient dies some of them want to fight you.

Similarly, a Kenyan nurse shared her perspective on the challenges to care when family members had not been told a patient’s diagnosis:

I am not at ease to disclose it to family, and so it hampers me from continuing good care to the infected person. So if the client does not disclose it becomes difficult for you to give the appropriate care you need to give, as opposed to other diseases like malaria, you just tell the relative that your client is suffering from malaria.

A South African nurse believed that “most of the patients are not ready to disclose and as a result, we are not able to give the relevant medications or treat them properly because they don’t even disclose to the health providers.” South African focus group members also suggested that the secrecy surrounding HIV and AIDS made it difficult to provide general assistance and support:

I just think that most of the time the families are excluded, because I don’t know [about] the others, but usually you can’t just say to the family the patient has got HIV, you understand. If they come with the knowledge, then you can assist them.

Likewise, it was difficult to discuss the cause of a patient’s death:

I think the community does not appreciate what we as nurses do, because of the saying [that] goes around in the community: “If someone comes to the hospital he or she will die.” Yeah, that is what we normally hear, and this is even made worse by this confidentiality clause. Because if the community was aware that the patient was positive they would know that is why the patient died.

Many of the nurses emphasized the importance of disclosure to a family member or close friend to ensure that the patient received adequate support. A Jamaican nurse advised,

So you can basically let them try and find a close, close family member they might want to talk to, because when they are not here at the hospital, at home they are going to need somebody to support them so they can sit and talk with them.

A South African nurse stressed the importance of disclosure: “I think they get very much depressed because they’re not sharing it with someone.” Nurses found that patients “get more attention from the family when they know,” and “[relatives] bring nutritious things for them and you see it’s a difference when the relative knows.” A Ugandan nurse also stressed the importance of disclosing to the family “because these are the people who end up helping in the nursing of the patients.” Despite the possibility of receiving extra support, many patients found it difficult to disclose their HIV status to their family because of the fear of stigma and discrimination. A Jamaican nurse was the only person one patient trusted to disclose her HIV status to:

Can you imagine if you have an HIV-positive client, who the only person she feels that she can relate to is you? So whatsoever the situation is, she is calling you and you have to be there to try and see how you can help her to weather the stresses and so on.

Stigma and infant feeding

Participants commented on the stigma associated with formula feeding and the challenges it posed in relation to the provision of nursing care. Mothers had “learned in the antenatal processes that if you do have [HIV] you are not supposed to breast feed.” Therefore when women noticed a mother feeding her baby formula, they would ask the nurse why. One participant recalled a situation when an HIV-positive mother “did not want to take home the baby feed” because this would mean she would have to tell her partner her HIV status. A South African nurse also mentioned that it was difficult for an HIV-positive mother to keep her status secret “if not breastfeeding because . . . she will have [to] buy the formula for feeds.” In a Ugandan focus group, a participant shared some of the repercussions faced by new mothers if they didn’t breastfeed their newborn in front of relatives:

Yes they can even abandon the patient. They cannot even come back to check on her because it will be like a punishment—like, “You brought the disease into the family.” Because HIV is still associated with bad behaviors, like, “You must have messed [had an affair] to get this disease.” . . . That is why even [for] us the nurses it becomes a challenge if you disclose and this woman is abandoned with you. Then you [do not] know what to do next, especially if she is in a paying ward, if other people run away from her.

Stigma and families

The secrecy surrounding an HIV diagnosis could lead to problems with the relationship between the nurse and the relatives: “So it [secrecy] brings them [relatives] to the point of frustration sometimes, and it sort of will take them away from you, where they will say they can’t trust the institution because you don’t know what you are doing.” One nurse stated that it was the patient’s responsibility to disclose the HIV status to relatives; however, “most of the time they do not” because they are afraid of abandonment. One Jamaican nurse recalled that following disclosure, “You have relatives that just forget about that person.”

A South African nurse believed that families neglected HIV-positive patients because “they still think that most of the people contacted HIV through sexual contact, so according to them it’s gonna put a stigma on [the family].” Secrecy made it “difficult to tell them [relatives] what is the problem and what can be the problem leading to this and this.” These situations were challenging for nurses because “it looks to them [relatives] that there’s nothing we do to help them. That’s the problem.” One nurse said, “When they are not aware now, they treat it casual, and any deterioration in condition then the nursing staff, the medical staff get the blame that they are not doing anything for the patient.” Another participant commented,

Working on the wards sometimes . . . when they [relatives] realize that that patient is HIV, they refuse to come back to take them home. Nobody wants to speak with them, and sometimes the relatives go and tell others outside that, you know, what the patient condition is, and that causes them to get depressed and sometimes they even want to take their lives.

Although participants encouraged their patients to disclose their status to family, several participants emphasized that it was the patients’ right to disclose their status. A member of the South African focus group pointed out, “We just leave it into the patient’s hands. The issue of disclosure lies entirely on the patient’s orders. We just don’t force them to disclose.” In another focus group, a participant shared the following:

The most difficult thing is around the issue of disclosure, around the issue of human rights, patients’ rights. Because you’ll remember, HIV has become a human rights issue. Now if it depends on whether I want to disclose or not, and if, if you go and tell somebody about my condition, without my consent, I can sue you or do whatever I want to do. Now, if we can take that away, if that can be removed, I think HIV management would become easier. Say, for example, in comparison with TB [tuberculosis]. In the past people didn’t like TB.

In Uganda the status of an HIV-positive mother could not be disclosed to her husband without her consent:

We still have to have the mother’s consent to disclose her HIV status to her husband. When she says no, then we cannot do much. In this country testing for HIV is still voluntary. Therefore you cannot force anybody in order to protect their baby!

Another focus group member, while acknowledging the importance of human rights, argued that protecting the rights of one individual might not be in the best interests of the community:

He [has] just mentioned the issue of human rights. I wonder if really we are doing the correct thing by treating a person as an individual, because really in the old days when you were diagnosed with TB, there was no concern, no what. The inspector will go into your home and take the whole family to be tested, but now we treat one person in one family. Are we really doing the correct thing? Is this human right issue not obstructing the correct service we should give to the community?

One nurse hoped that once the family learned the true cause of a relative’s death, they would understand the challenges the nurses had faced in providing care: “I just have to think that by the time they know the cause of death they will be more relaxed and cool so they won’t do what they threaten us or whatever.” A South African nurse had faced similar situations with relatives who would ask, “Why is she not getting better? Then it’s getting difficult, because they blame you sometimes because of why she’s not getting better. . . . They feel we’re not doing enough for this person.” A Jamaican nurse summed up the situation very succinctly: “You can’t ask the nurses to give proper adequate and effective care if they don’t know who their clients are.” Secrecy related to the disclosure of HIV status could result in relatives being inadvertently exposed to the virus: “They [relatives] help them be with the washing and then they touch the blood without protecting themselves because they are not aware about the condition of their children at home.”

Organization of the unit

The practice of segregating patients who were HIV positive that was seen early in the epidemic was much less common at the time of the current study: “We’ve done away with that. HIV patients are admitted in all the wards according to their problem that was identified on admission.” Similarly, in Jamaica a nurse reported,

What we started doing is putting them all over—integrate them in other cubicles so you would not have all the HIV patients in Cubicle Six. . . . It helps, because basically other patients don’t know the other patients’ diagnoses. . . . We try and maintain that confidentiality.

Nurses in both Jamaica and South Africa recommended mixing patients with HIV with those without HIV to protect their privacy and confidentiality. A Jamaican nurse suggested that when “admitting an HIV patient to the ward, basically you mix them with others, you don’t sort of isolate them or anything.” A South African nurse suggested, “There must be a flow . . . of patients. We must not say that this room is for this. We must mix the patients.” The practice of mixing patients was also felt to contribute to a supportive environment for care. A South African nurse said,

We don’t put them in separate wards. We put them next to the other patients so at least they can talk to the other patients, because if you lie there in a single room being lonely, you become so depressed.

Similarly, a Ugandan nurse stated, “We don’t isolate one who is negative from those who are positive.” Jamaican nurses also mentioned the importance of mixing HIV outpatients with those with other conditions: “You would mix them, you wouldn’t just single out a day [to attend an HIV outpatient clinic]. So they would come with the regular diabetic patients, the hypertensive patients, other medical conditions.”

Maintaining confidentiality

Nurses shared several strategies used to protect the confidentiality of HIV-positive new mothers. A Jamaican nurse stated that she sometimes gave formula to the baby of a non-HIV-positive mother: “I have no other option but to take mummy’s [mother’s HIV-negative] baby and give him formula also, so she [HIV-positive mother] is not alone in the formula giving. Right, so I don’t single her baby out.” Although the practice of giving formula to a breastfed baby raises important ethical issues, it highlights the extreme measures taken by some nurses to protect the confidentiality of their HIV-positive patients. A Ugandan nurse shared her strategy for protecting an HIV-positive mother’s confidentiality: “While giving nevirapine syrup [antiretroviral] to the baby, we take the baby to a secret room to give the baby this medicine.” One nurse mentioned that when a patient was discharged, instead of sending the family members to the pharmacy to pick up antiretrovirals, “What we do is to get the medication for them before they leave, so basically we have to do more for them.”

Despite many nurses stating that their institutions expected them to keep patients’ health information confidential, nurses described additional precautions they put in place to manage sensitive information. One Jamaican nurse mentioned that when she was handling information about HIV status she would “directly take it to that person.” Another nurse mentioned that in her unit, instead of noting on the chart that a woman was HIV positive, the health team decided that to ensure confidentiality “we were going to the maternity ward and we were going to let the nurse in charge know that this is what is happening.” A Kenyan nurse emphasized, “They [HIV-positive patients] like to be treated with a lot of confidentiality.”