“It doesn’t exist, only other people have it, or it’s bad luck”: perceptions of HIV as barriers to its prevention in Bata | BMC Public Health

A variety of perceptions and beliefs about HIV were identified among the interviewees. Not all participants had the same perceptions and beliefs regarding the virus. The main perceptions of HIV were that it was: (1) a hospital disease; (2) a new and unknown disease; (3) a disease of others; (4) a disease that doesn’t exist; (5) a disease of bad luck; (6) a disease resulting from sexual abuse; (7) a contagious disease; (8) a deadly disease; (9) a strange disease; and (10) a chronic disease. Below we describe the content and meaning of these different perceptions of HIV.

“A virus like a hospital disease”

Independently of gender, age, education and habitat, all interviewees perceived HIV as a “disease” of modern medicine: a “hospital disease”. It should be noted that in Equatorial Guinean society there are two types of disease: Fang illnesses, pertaining to traditional medicine, and hospital diseases, corresponding to modern medicine. Thus, there exists a dual perception of illness [26]. Since HIV is perceived as a “hospital disease,” interviewees explained that it could only be diagnosed by doctor of modern medicine. Therefore, they said, neither witchcraft nor traditional healers could treat or cure it:

“I asked and they told me that AIDS is a hospital disease that Fang medicine can’t cure” (male, HIV-positive).

“No, no, no, the healers cure illnesses. No, no, no, the healers cure traditional illnesses like curses, traditional things too, but they can’t cure malaria, they can’t cure AIDS, they can’t cure other diseases, many diseases they can’t cure” (woman, without diagnosis).

“A virus like a new and unknown disease”

Interviewees from the older age group perceived HIV as a “new” and “unknown” illness. They explained that this illness had not previously existed in the country and that people had only recently begun to talk about it. They also said that there was hardly any information on the subject, and therefore its origins were unknown. According to some participants with a high level of education, this was one of the reasons why the existence of HIV was called into question in the country:

“I’m not from the time of Obiang, I’m from the time of Ondó Edu, who was regional president, my eyes opened first in the time of Macias. At that time, we knew nothing about AIDS. AIDS is something new. So, we don’t know this illness” (woman, without diagnosis).

“It’s not clear to me either, but I’d say, as we’ve always said: no, in all the time we’ve lived here, these illnesses haven’t existed” (male, without diagnosis).

“A virus like a disease of others”

Interviewees living in villages and using traditional medicine had the perception that HIV was a “disease of others”, based on the belief that the virus was a disease imported to Guinea Equatorial by visiting white people. They explained that the disease could also enter the country with Guineans who travelled to Europe and later returned with it:

“They say not… They’re Western things and bad things. People who’ve been there bring back these lies that they have there. When a person thinks that way, I don’t stay with them because they’re never going to understand me […]. Also, I don’t understand why they don’t want to believe it even though they can see it” (male, without diagnosis).

“There are many people who come to bring benefits to Guinea, engineers, people with PhDs and so on, it’s a good thing for Guinea, but there are others who bring diseases. That’s the bad thing we suffer from now […]” (male, without diagnosis).

“A virus like a disease that doesn’t exist”

None of those interviewed denied the existence of HIV or AIDS. However, some commented that there was a part of the Guinean population –mainly those with a low level of education– who denied the existence of HIV and AIDS in the country:

“Let’s not forget how famous AIDS is getting, right? Only blind and stubborn and skeptical people want to deny that it exists, but men of good heart obviously realize that it really exists” (male, without diagnosis).

Interviewees with a higher level of education stated that since part of the population denied the existence of HIV, patients diagnosed as HIV-positive in hospitals often questioned the results of the diagnosis. They explained that in many cases these patients saw it as an economic issue, thinking that health workers diagnosed them with HIV to make money from the treatment:

“Well, because they say that if they have an appointment at the hospital because of the virus it’s to pay them money and I don’t know what. Well, I don’t know how it is they don’t believe, despite the negative effects of AIDS that we’re seeing. Many insist, as Don Rigoberto said, that they don’t want to see the existence of AIDS and say that the doctors told them that to make money” (male, without diagnosis).

This profile of participants explained that the reasons why this population denied HIV were: (1) the lack of knowledge and information the population had about the virus and AIDS, since it was a “new disease”; and (2) the belief that it was a “disease of others”.

“A virus like a disease of bad luck”

Another perception of HIV emerging among participants was that it was a “disease of bad luck”. This view prevailed among participants living in villages and using traditional medicine, although it was also found among other interviewees.

Those perceiving HIV as a “disease of bad luck” stated that the virus was a disease that depended on fate. It depended on what bad fortune had in store for the person, since they explained that it was a disease that no one desired and that no one sought to have. It was a disease that fell on the person like a curse:

“It’s bad luck, I don’t know where it came to me from. I, truthfully, and it’s not confirmed that I have HIV and AIDS, you understand? In all sincerity, I don’t agree with these analyses” (male, HIV positive).

In the discourses of those who held this perception of HIV as a “disease of bad luck,” a series of reasons underlying this perception emerged:

1. 1.

   One was the possibility, and therefore the probability, of having been infected (or not) through sexual relationships, since this may or may not have happened, given that there are other ways of transmission:

“Maybe yes and maybe no, because perhaps there was some carelessness when having sex. Well, it might not be through sexual relationships, because it can be through a manicure or other ways […] but when it comes to you, you must accept it” (male, HIV positive).

1. 2.

   Another was the possibility, and therefore the probability, that a person could be infected with the virus because there were ways of transmission that did not depend on their personal responsibility, such as pedicurists or hairdressers’ knives:

“It’s a disease of bad luck, you can get infected with HIV and AIDS through sexual relationships, or because on a whim you go and have a manicure. You don’t know who has manicures there. If someone infected with HIV and AIDS has just had a manicure and then they give you one, you get HIV and AIDS, it’s bad luck” (woman, HIV positive).

1. 3.

   Another reason stemmed from the view of chance the population has regarding Fang illnesses, in general derived from animism [27]:

“[…] I think because… OK, from time to time I ask why exactly someone looked at me so that I got this disease. That’s what I think sometimes” (woman, HIV positive).

“A virus like a disease of sexual abuse”

Another extremely widespread perception among the population interviewed was that HIV was a disease that was a consequence of “the abuse of sex”. Thus, they explained that it was a sexually transmitted disease. Having HIV was identified with having led a sexually promiscuous life. Hence many of the women interviewed made moral judgments about AIDS throughout their interviews, stressing that it was “a disease that was not good”. This perception was more prevalent among women than men:

“Well, the opinion I can have about HIV/AIDS is that it’s a disease caused in the places where there’s abuse of sex, where there’s abuse of sex. It’s the way people live now, it’s disorder, disorder in their lives” (male, HIV positive).

“A virus like a contagious disease”

Another majority perception was that HIV was a “contagious disease”. Almost all interviewees stated that the virus was transmitted through the sexual act. However, to a lesser extent, other ways of transmission were referred to, such as blood on hairdressers’ knives for cutting hair, or shaving, pedicures and manicures. Some stated that HIV could be transmitted by plates, glasses and cutlery used by HIV-positive people. This perception contributed to creating mistrust and fear around the virus:

“So, we know that it’s a very dangerous disease, and very contagious throughout the world, because it’s in the world” (male, without diagnosis).

“If she’s touching this food with her hand, I’m not going to go and share with her. And if someone comes to me with a glass, then we wash the glasses” (woman, HIV positive).

However, in the discussion groups the debate over whether it was men or women who infected more people with the virus arose spontaneously. On this issue participants in the groups were unanimous in the opinion that it was more often men who infected women. Paradoxically, though, most women agreed that society blamed them, whether as wives or girlfriends, when a man was diagnosed as HIV positive:

“Women, often, when they already have a husband, they don’t know other men after that. But the men are the ones who are in the street, if they get HIV and bring it home to you, you can’t know where they’ve brought it from. What usually happens is that when the husband has HIV, people say that it’s the woman who has committed adultery” (woman, without diagnosis).

However, most interviewees perceived that women were those who suffered more HIV and/or AIDS. They explained that this was due to the greater promiscuity of Guinean males and their refusal to use contraceptives with their wives:

“Yes, because if we look at the statistics, if we look at the statistics of AIDS contagion, there are more women because they’re above the men. If we think about the traditional aspect of the area I live in, 50 meters from here, there’s a famous medicine woman, who sometimes when I pass her house has 67 ill women and only two men in there. Think about it” (male, no diagnosis).

“A virus like a deadly disease”

With the exception of participants with a higher level of education, another majority perception was based on the idea that HIV was fatal. Interviewees explained that it was a very dangerous disease, which had no cure and inevitably led to death:

“Yes, I knew that it was a dangerous disease, a bad one. In any case, well, I knew that this illness has no future. Well, I thought, when I saw I was infected I wouldn’t live any longer. That’s why I wanted to die, before…” (woman, HIV positive).

Participants with a higher level of education, and some other interviewees, commented that the Guinean population believed that when someone was infected with HIV, “death comes to them suddenly”:

“It will be right now, a sudden death shall we say” (male, without diagnosis).

“It’s not the same, how can it be the same, death comes to you” (male, without diagnosis).

Some of the women interviewed, however, questioned this belief in sudden death. They stated that they knew people with AIDS who had been living for some time and who were even working and bringing home money.

Interviewees with a higher level of education commented that the association between HIV and death had caused a lot of social alarm and hysteria around HIV in Guinean society. This meant that the “disease” had not been normalized in Guinea as it had in European countries:

“What has most provoked disgust about this disease in our society is that it’s been dramatized a lot. I’m sure that that a Western person, an American doesn’t have the same concept of AIDS as an African. It seems that they’ve told Africans that AIDS is a disease that whoever carries it is apt to die at any time” (male, without diagnosis).

The fact that the virus is perceived as a “deadly disease” stems from the identification of HIV with AIDS. In this respect it should be noted that most interviewees did not distinguish between the two terms. They were not aware of any clinical distinction between acquiring the virus and suffering from acquired immune deficiency syndrome. They equated being an HIV-positive person with having AIDS; hence the idea that HIV was fatal. Therefore, due to the identification of HIV with AIDS, none of the HIV-positive people interviewed responded in the affirmative when asked if they suffered from HIV:

Interviewer: “What is HIV?”

C: “They say that it’s AIDS, right? Isn’t it AIDS?”

Interviewer: “Timothy, what do you think?”

T: “I have that idea because I don’t know what AIDS means, if it’s malaria I don’t know what it means. I have that idea, a disease called AIDS, I don’t know.”

Interviewer: “Nicholas?”

N: “The same for me, I don’t know what the disease called AIDS is, I only hear AIDS, AIDS” (men, without diagnosis).

“A virus like a strange disease”

Another perception of HIV held by some interviewees was that it was a “strange disease.” Interviewees with a higher level of education said that since HIV was seen as a “hospital disease”, but one which did not disappear from the body when pharmaceutical medicines were taken, or since it had no cure (as opposed to other “hospital diseases” like malaria), then the idea of the disease as an anomaly was accentuated:

“Because you can’t cure it. On that basis it can’t be the same as malaria because it seems that you can cure malaria […]” (male, HIV positive).

“The illness that most worries me because this illness that we’ve got now that’s called AIDS doesn’t have a cure. I can get ill with any other illness, all other diseases have a cure” (woman, without diagnosis).

“A virus like a chronic disease”

Lastly, participants with a higher level of education perceived HIV as a “chronic disease”. They stated that thanks to medical advances, specifically the development of antiretrovirals, the virus was now not a “deadly disease” but a chronic one:

“With so many advances they were saying that they were taking antiretrovirals, which means that now it’s not fatal. They cost 8,000 francs a month, well, that’s information from the TV” (male, without diagnosis).

They also commented that thanks to the improvements and successes achieved in the country, HIV was now a “chronic disease”. They referred particularly to the greater accessibility of treatment, made possible by the government’s free distribution of antiretrovirals, as an important factor.

Also, interviewees with a higher level of education and some others commented that the different perceptions of HIV among the population depended on their level of education: the higher the level of education, the less it was perceived as a “deadly disease” and the more it was seen as normal and the diagnosis accepted:

“The less educated population still sees it as a deadly disease, although it’s also deadly, but those who are better informed see it as a chronic disease if you’re in treatment” (male, without diagnosis).