Terms Used for People Living With HIV in the Democratic Republic of the Congo

Population and Data Collection Procedures

Data for this article on HIV-related labeling were part of a study to inform psychosocial support interventions including positive prevention among YLWH. Participants included a total of 189 YLWH aged 14 to 24 years (mean = 21) receiving HIV care and support in Kinshasa, Democratic Republic of the Congo. They were recruited from four organizations that provided HIV care and/or support.

Using Excel random number selection formula, we randomly selected 29 young people (13 males and 16 females with a mean age of 19) from among the 151 YLWH who were aware of their HIV status, to participate in in-depth interviews. In addition, 8 HIV care/support providers (with an overall mean age of 41 years) participated in a key informant interview, 2 from each organization.

All in-depth interviews were conducted in the language most predominant in Kinshasa (Lingala) in private rooms by trained interviewers. The research was approved by the University of North Carolina School of Public Health Institutional Review Board and the Ethics Committee of the University of Kinshasa School of Public Health. Selected participants provided informed consent if at least 18 years old. YLWH less than 18 years old provided informed assent only after a parent/guardian signed a parental permission form.

During in-depth interviews, we addressed one primary question: How are people living with HIV in Kinshasa treated in the community? Probing questions included the following themes: names/labels used to talk about HIV, AIDS, and PLWH; names the respondents had been called and how they felt when people used those names or labels,;the most common names/labels used in their community/social group, including those used for HIV-positive youth; and the meaning of these different names/labels.

During key informant interviews with HIV care or support providers, we asked participants the same initial question and the same probing questions as in the in-depth interviews. However, unlike the in-depth interviews, probes were not intended to find out about key informants’ perceptions of their own status.

Data Analysis Procedure

We tape-recorded in-depth and key informant interviews in Lingala and transcribed them verbatim into French for analysis. We translated quotes selected for inclusion in this article from French to English. We imported all interviews into Atlas.ti 5.2 (2007) for coding and analysis. For data analysis, we searched for patterns in the data and conceptualized ideas that helped explain the presence of those patterns (Ryan & Bernard, 2000). Analysis of textual data consisted of five main steps: (a) reading for content: This step involved data reading and rereading of transcripts until content became intimately familiar, and emergent themes were noted; (b) coding: in this step, a list of codes found inductively from the transcripts and deductively from the research questions was created; to ensure intercoder reliability, a random sample of 25% of transcripts was double-coded by an independent coder; (c) displaying: major subthemes that reflected finer distinctions in the data were displayed; (d) data reduction: a table was created that categorized and displayed the data; and (e) interpretation: the final step included identification and explanation of the data’s core meanings using the nine categories employed by Uys et al. (2005). We also used Moscovici’s (2000) two processes that generate social representations: anchoring and objectifying. We coded data in multiple applicable categories.

HIV-Related Labels

The 8 sampled key informants made 34 references to 18 HIV-related labels. In addition, 23 of the 29 YLWH made more than 499 references to 110 HIV-related labels or phrases. All 31 participants who reported HIV-related metaphorical terms and phrases reported that the terms were used regardless of the presence of a PLWH, including some direct insults and other terms used to discuss the PLWH in their presence but without their knowledge (see Table 1).

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Table 1.

Metaphoric Labels Reported by Key Informants and YLWH in Kinshasa About HIV/AIDS and PLWH.

Labels Used in the Anchoring Process: To Reduce Strange Ideas to Ordinary Categories and Familiar Images	Labels Used in the Objectifying Process: To Turn Something Abstract Into Something Almost Concrete; From the Mental to the Physical World
Attributional anchoring labels: AIDS is the disease of those who love (i.e., those who have sex), a disease of sexuality, a disease that one chooses to get. PLWH is considered a tramp, a mean/bad person, a prostitute.	Attributional objectifying labels: AIDS is a punishment from God, a disease of greed for money, buying one’s death with one’s own money. A PLWH is seen to have stepped on a fatal nail or thorn or on an electric wire (power line or wire that conducts electricity to homes and businesses), or to kill celebrities.
Commonness-related anchoring labels: AIDS is the disease of the century.	Commonness-related objectifying labels: Getting AIDS is like winning a lottery. A PLWH is a member of a group of people living with HIV.
Death-related anchoring labels: A PLWH is expected to die the following day, a walking/standing corpse, an eternal coffin, just a carcass or the one for whom only God has the final decision, the one who is saying “follow me”	Death-related objectifying labels: A PLWH has stepped on a land mine; is at the airport, ready to leave, to die; a poisoned gift, the one who has swallowed a thorn or has stepped on a fatal nail or a thorn.
Devaluing anchoring labels: A PLWH is the devil, a mean person, a rotten person, a stray dog that should be run away from	Devaluing objectifying labels: A PLWH is a pitiless prostitute, like a water source where a dog was killed, innocent looking, like a bitter tree, the Biblical number to represent the devil, a suspicious terrain to be avoided
Factual anchoring labels: Talking about a PLWH, one says, She or he has got it, AIDS person, a person with shingles, with the syndrome. AIDS is the disease of the blood.	Factual objectifying labels: Talking about a PLWH, one says, She or he has got the insect, the small animal.
Lingering illness-related anchoring labels: Talking about a PLWH, one says, A sickly person (woman), the one who never gets cured because of a prolonged malaria (i.e., AIDS)	Lingering illness-related objectifying labels: A PLWH is said to have entered the house, to be sitting on the toilet because of diarrhea.
Neutral anchoring labels: A PLWH is said to have been given poison, to be a member of a fraternity group or to have been involved in an accident.	Neutral objectifying labels: A PLWH is a sentenced person, with body spots, given by a “mosquito.” Sometimes, a PLWH is said to have been bitten by a goat (i.e., very unlucky), to suffer from the unnamed disease.
Physical feature-related anchoring labels: The PLWH is said to be now only skin on bones, a thin person, a skeleton, the one to just look at because she or he is no longer there.	Physical feature-related objectifying labels: The PLWH is said to be a visual determine (a rapid HIV test), identifiable as HIV positive simply by appearance, a burned person, a sick hen
Wordplay anchoring labeling: AIDS is an imaginary syndrome to discourage lovers, the disease of four letters (A-I-D-S), the Lopema (lingering and painful disease).	Wordplay objectifying labeling: AIDS is called Sidonie (a first name sounding like SIDA), Sina dawa (Swahili; a disease with no medicine; the name sounds like SIDA).
Fear-related anchoring labels: HIV is called a bad insect, that little thing, AIDS a disease with no relative, a pitiless disease.	Fear-related objectifying labels: A PLWH has swallowed a toad; has a bone blocked in his or her throat, has been fatally bitten by a bee. AIDS is called the Army general or the one who pronounces the final sentence

In general, the YLWH were uncomfortable describing the terms and phrases used to describe PLWH or their condition. The 23 YLWH reported that HIV-related labeling prevented them from discussing their HIV status, as described by one of the youth:

When people label us, it is just as if they were insulting. When they say those things, I really feel hurt. Labeling people that way does hurt but there is nothing one can do about it. What do I normally do? When I hear those people insult us, I just go on and say nothing. (20-year-old [20] YLWH)

Our results revealed that fear of HIV/AIDS made people avoid and/or stigmatize PLWH, even in their presence. These labels were subjective distortions of HIV/AIDS, with which people seemed to make light of and soften the naming of the illness because it was about private, sensitive issues not usually named publicly, including sex and sexual behavior. These labels could be subtle, because some appeared neutral and nonstigmatizing on the surface.

Most of the metaphors used to describe HIV/AIDS or PLWH reported here show that people wanted to understand HIV, but it remained an unfamiliar abstract notion. To increase their understanding, they used anchoring by transforming it into concrete realities (e.g., disease of the lovers, of the four letters), and objectifying by naming it in comparison to already known things, including calling HIV an insect, poison, meeting the General of the enemy army, electric wire, nail, or thorn, or PLWH being considered dangerous. YLWH who are aware of such labels are likely to feel desperate and might hide their condition.

Our results illustrate some of the challenges the youth faced, including physical pain from their HIV infection, avoiding interactions with other people, eschewing public places, and contemplating suicide. Some YLWH used coping strategies to minimize the effects of stigma-related marginality, such as pretending to ignore the people who were talking to or about them. These results emphasize that no matter how obscure the derogatory labels were, people ultimately understood them. It might seem odd that the purpose of the labels was to understand strange things by making them familiar, and to think that they would be obscure to others. However, people made these things familiar for themselves, and at the same time they did not want the “victims” to see them openly. Some YWLH appeared to have internalized these labels, describing themselves as worthless and deserving to die.

Every category adopted from Uys and colleagues (2005) had at least one term or phrase used by YHWH or health care providers in our study. Labels used and a few representative quotes are given below.

Attributional Labels

Attributional labels described the cause of the illness or the lifestyle associated with acquisition of the infection. Sometimes, PLWH were implicitly blamed for being careless and participating in socially criticized behavior that leads to HIV infection (Uys et al., 2005). This category had the most terms and phrases (22 labels in total used 96 times), including labels that described the cause of being HIV positive, such as the disease of those who love (i.e., who have sex) and the disease of sexuality. These labels also referred to AIDS as the disease of socially judged lifestyles: I let my own money kill me, disease of greed for money, a punishment from God, a disease that one chooses to get, a tramp or a prostitute. These labels also described AIDS as the disease of people who were not careful enough: she or he stepped on a nail, she or he stepped on an electric wire, and she killed Lwambo, a famous musician of the DRC. A 24-year-old female YLWH described this attributional process as follows:

If they happen to know that you have HIV or if the signs of AIDS become visible, people will start talking to each other with disdain about you. Look at him/her; she or he is a person with an insect/virus. Be careful; whoever will make the mistake of being with her/him will be bitten. She or he has the insect/virus.

Neutral Labels

Neutral statements refers to those that did not have either a positive or negative slant, and that said very little about the disease, the person having it, or the attitude of the person making the comment (Uys et al., 2005). The terms or phrases (10 in total used 14 times) of this category included the following: he or she was poisoned, he was involved in an accident, and she or he was bitten by a goat, which culturally means “bad luck” because a goat never bites. Additional labels included those that portrayed qualities of the PLWH or the disease: people with AIDS: the disease that comes with skin lesions; a symbolic description of transmission routes: a mosquito, comparable to malaria that is transmitted through a mosquito bite; a needle: referring to how HIV can be transmitted; and other neutral labels such as the person “is a member of a group” and she or he has “got it.”

Respondents said that people used these terms or phrases to avoid stating in public that their relative died of AIDS; therefore, they might prefer to say that their relatives were poisoned. In other circumstances, PLWH were simply called people with AIDS with no other underlying message. Although these terms are categorized as neutral, in some cases they might actually reflect that the speaker considered AIDS or PLWH derogatorily. It is possible that the neutral terms were used to hide what the speaker considered to be something negative.

Death-Related Labels

Death-related labels suggested that PLWH had little or no future, or referred to the impact of the illness on a PLWH’s future. There were 82 references to the 12 terms of this label category, implying either a compromised future of the PLWH because of imminent death or that people caring for the PLWH were waiting for the person to die. Terms and phrases describing a compromised future for the PLWH included the following: she or he has entered the house for good; she or he has stepped on a land mine; is a walking/standing corpse; follow me to the grave; she or he is at the airport, ready to leave (i.e. to die), she or he is just an empty carcass, a person who died in advance; the disease that pushes me to go away (i.e., to pass away).

Death-related labels were also linked with the idea that relatives of PLWH were just waiting for death to come. Labels of this type included the following: just look, the person is no longer alive; only God has the final decision; and you think they are going to die tomorrow but they do not die. Other labels compared the behavior of the PLWH to that of a person who touched or was in contact with a deadly object. Labels of this type included she or he stepped on a nail, she or he stepped on an electric wire, she or he has swallowed a thorn, and she or he is an eternal coffin. Stepping on a land mine, for example, means that the person did not pay attention and stepped on a land mine that was ready to explode and would, therefore, die. Similarly, HIV or PLWH was compared to a dangerous thing that one should avoid. One label conceptualized PLWH as a poisoned gift: whoever had sex with him or her would think they had an attractive gift but they would end up getting poisoned (i.e., acquiring HIV).

Physical Feature-Related Labels

This category refers to nine labels used 69 times that were used to describe the appearance or actions of a PLWH. The references in the category were all negative, including the following: the person is now only skin on bones, with skin rashes, or she or he became a skeleton. Other labels in this category included just look at the person, she or he is no longer there; that one “has become a burn,” as if HIV was a fire that causes skin rashes; it is a sick hen; and a thin person who keeps on getting thinner and thinner. A health professional discussed physical-feature labels used among medical colleagues as follows:

I know for example in an NGO [nongovernmental organization] that I am not going to mention here, the nurses were discussing among themselves. One of them said, “Look, there is a visual determine for you. Watch out!” Visual determine means that, if you look at that person, you will see the signs . . . of the disease. Determine is one of the rapid tests, you know. The phrase implies that you do not need to use determine rapid test to know that the person is HIV positive: you just use your eyes as the determine test.

Factual Labels

This category refers to descriptions that used facts or medical terms to portray the illness and the people who have it. The 54 references to the six phrases of this category included she or he has got it, she or he has the disease of the blood (referring to the fact that HIV can be detected in the blood), she or he has the germ, or she or he has the insect, the animal (in Lingala, insect and animal are not sharply distinguished, and some people believe HIV is a parasite called nyama in Lingala). Other factual labels were as follows: AIDS people, she or he has the shingles, and she or he has the syndrome.

Lingering Illness-Related Labels

This category includes metaphorical and idiomatic descriptions of the chronic nature of the illness. Participants referred 64 times to such types of descriptions, using the following six terms or phrases: she or he might die tomorrow (i.e., on any given day), she or he went into the house (maybe forever to hide himself/herself or because she or he is too sick to leave the house), the person is seated on the toilet for a long time because of diarrhea. Other labels related to lingering illness included the following: she or he will never be cured, she or he has prolonged malaria, and she or he is sickly. Most of these labels can also be regarded as death-related.

Common Illness-Related Labels

This category refers to how common (referring in some cases to prevalence) HIV was in the community. Participants used these phrases 16 times, including “lottery,” referring to the fact that HIV was common in the community but only a relatively few got AIDS, just like many people play the lottery but only a few win. PLWH were also referred to as a member of a group of people living with HIV. Some individuals were said to have called HIV the disease of the century, or the scourge of the century.

Wordplay Labels

This category comprises descriptions using a play on words or sounds to label PLWH or the disease. People used the seven labels of this category 46 times. Terms included words such as SIDA (Syndrome Imaginaire pour Décourager les Amoureux; imaginary syndrome to discourage lovers); aza’ na quatre lettres (she or he has the four letters, referring to the four letters of AIDS); or they used DASI (the inverted acronym SIDA) or sidonie, which is a first name that resembles SIDA. They also used SIDATE to feminize SIDA, so people did not think it was about the virus or the disease, or to put SIDA in the negative form in Lingala, which if separated into two words, means “no AIDS.” Other wordplay labels included LOPEMA, a coined acronym for Longue et Pénible Maladie (lingering and painful disease), as well as sinadawa (Swahili; “disease with no medicine”), which in French also sounds like SIDA.

Devaluing Labels

Many of the labels classified in other categories also belong to this category. Here only 24 labels are considered, and they were used 72 times. One phrase referred to murder: she or he “killed Luambo.” Luambo Franco was a famous musician in the DRC who is believed to have died of AIDS; therefore, this phrase emphasizes the potential for a PLWH to infect and kill others. Another term, kakuba, a slang word in Lingala meaning a pitiless prostitute, suggests that a PLWH is a cruel person, a harsh person who kills intentionally. Poison was a common theme as well: “a water source that killed a dog” means that a person with HIV is poisonous, just like an innocent-looking water source that can cause disease without a person realizing it until it is too late. Talk of a “bitter tree” suggests that despite appearing as a natural source of life and pleasure, a PLWH is inedible and deadly, and is not to be “eaten” (i.e., not someone to share life or have sex with). Other devaluing labels included describing PLWH as the devil, a mean person, 666 (the number in the Bible symbolizing the devil), tigo (the name of an inexpensive cell phone company that established a system of free calls and bonuses, like a PLWH who “gives a bonus” to sex partners), a sorcerer, a rotten and stray dog from which people should run away, a suspicious terrain, someone on whom to close the door (suggesting that people should close their door to avoid this “undesirable” person coming for visit), and a casualty of war.

Fear-Related Labels

Fear-related labels illustrate how people were afraid of the disease and its incurable nature. Most of the ten labels used also fit elsewhere. These labels were used 48 times and included the following terms and phrases: she or he had “swallowed a toad” (people believe that whoever has swallowed a toad will die; this label is also death-related), she or he has met the General of the enemy army, an insurmountable enemy; she or he was bitten by a “bad bee” (a bee with a fatal sting; also death-related); a bone has blocked his or her throat (i.e., choking to death); having no relatives or a disease with no relatives (i.e., one must depend on the mercy of relatives, all others are enemies); and a pitiless disease. A fear-related label that can also be classified as a lingering-condition label is “bad insect,” referring to the virus. A fear-related label that also functions as a factual label for HIV is “the one which people do not name,” because in local culture one also does not name powerful people, otherwise it is feared they will attack you. Similarly, the virus was referred to as a frightening authority: the one with the power to end everything, the one who pronounces the final sentence.

In the following quote, a 19-year-old YLWH used a number of labels and revealed his way of interpreting them:

Reactions of YLWH to Derogatory Labeling

The YLWH had varying reactions to metaphorical labeling. Their reactions included feeling hurt, no longer participating in public gatherings, contemplating suicide, or simply ignoring the labels. One 24-year-old YLWH described a disturbing experience in his church:

I am a Christian and I used to go to church, where I disclosed my serostatus to my pastor. I attended church services regularly until one day, as he was preaching from the pulpit about something else, the pastor invited people to pray. I also went there, not because of my HIV status but for something else regarding the message he gave that day. All of a sudden, the pastor changed the topic and publicly declared, “Look at that handsome boy over there. He has stepped on the nail.” Imagine, that was in the church. From that day, I left that church and stopped going to church.