Based on a ground-breaking study among dying people in a hospital setting, Glaser and Strauss (1965) developed a four point typology of awareness contexts about death. In other words, they described four distinctive ways in which a context of awareness about dying influences interaction and communication with dying people. The typology is based on a two-person interaction. In the open awareness context, both the dying person and family member know that the person is dying. In the suspected awareness context, a person suspects that he or she may have a prognosis that involves death but this suspicion is not verified by those around him or her. Glaser and Strauss's third designation, the mutual pretense context, is one in which one or both parties pretend that they do not know the person is dying. At the end of the spectrum is the closed awareness context in which the person is not aware of his or her impending death, although others may know.
I have attempted to adapt this theory to provide a framework for understanding awareness about both HIV and dying among participants and the dying person and how it shaped communication. I have broadened the meaning of each context and Table 9.1 shows how I have adapted the theory of awareness for the purposes of the clirrent study.
Table 9.1 Awareness contexts
Open: Both the dying person and the family member know that the person has AIDS and is dying.
Suspicion: One or both parties suspect the person has AIDS and is dying.
Pretence/denial: One or both parties pretend that they do not know the person has AIDS and is dying or are in psychological denial.
Closed: Knowledge of AIDS and dying is hidden from the dying person.
[adapted from Glaser& Strauss, 1965]
Open Awareness
In this awareness context, I propose that participants and the dying person both know that the person is dying and that he or she has AIDS. This type of awareness context was rarely experienced by participants. Only in Ragani's case was there open discussion between her and her brother that he was dying of AIDS. However, this exchange only occurred shortly before his death and some family members were only informed at the last moment. Ragani said:
My mom didn't find out in fact until a day before he died. We didn't know how to tell her. The problem was that we had to tell her because... the doctor suggested that my sister-in-law has to go for the test and take the children with her. .. and she (sister-in-law) got her results just the day before my brother died, but by then, he had basically lost his mind.
He didn't recognize his family ... he was living his life back in his twenties ... didn't remember he was married and had children and all of that, so he didn't even know his wife's status when he died. So, when she found out, it was time to tell my mum. She needed to know. She was devastated. She knew as a Mum, for some reason ... she was losing her son. When she would visit him in the hospital, she would tell us, 'You know, he's not going to make it'. Mothers have that instinct, I suppose.
Suspicion
Most participants had suspected at some point that their loved one was ill with AIDS, though few realized that the person was dying. In almost every instance, the ill person denied that he or she had AIDS when asked. Several participants who were HIV-positive themselves gently approached the person and tried to get them to disclose, but without success. Sibusiso had witnessed his mother and aunt die of AIDS and he recognized the symptoms of AIDS when his brother got sick. But his brother refused to talk about it.
Sibusiso said:
I begged him to tell me what was bothering him. Even though I knew, I didn't want to say anything because I would have lost my friendship with him .. .It was very painful and frustrating ... The feet were swollen, the legs were a different shape and he would sleep sitting at the table. That worried me a lot. Every time he coughed at night, I would wake up and see if he's ok. Sometimes at night when he went to the loo (our loos are outside the building), I would escort him. I would hear him growling. He couldn't walk anymore and I would pick him up. Itwas very painful and sad at the same time.
Some participants encouraged their loved one to get tested after detecting well known symptoms ofHN/AIDS such as wasting, diarrhea and night sweats. Sizekele who had already lost three siblings to AIDS tried to get another brother to get tested but he refused. This frustrated her greatly because "he was qualifying for the ARV - he was working for a company which provided them with medical aid ... He had the means to afford the treatment." Sizakele experienced resistance from other relatives as well in terms of getting tested:
I have got one cousin... he is in the hospital. He is just finished. He started to get sick in December last year, and I could see how much girls he had infected. He kept on saying he was suffering from piles and loss of appetite and I said, 'How come?' What was ironic was that this cousin was
a teacher who was knowledgeable about HN/AIDS, and in the past, he had actually encouraged family members to get tested.
Both Felicity and Mthoko had knowledge that their loved one had AIDS but the person refused to discuss it. Felicity's best friend refused to confide in her even though Felicity had found out from another source that the friend was HIV-positive. She said:
There was no secret of hers that I didn't know except this trick HIV that she didn't want to talk about...It wasn't easy for me just to say, 'I know you are HIV-positive', though the signs was there ... The symptoms ... were very obvious now. So, one day I took a step and I went alone to her. I sat with her and I just ask what is going on inside of her. She said a lot of things. Her child is worrying her now. She just talked about the outside, than of addressing the real problem. I said it's very important to know your HIV status because when you're HIV-positive, we do something about it... But she didn't want to say a word about HIV ... her feet were like swollen, her stomach was like a nine month pregnant woman... I think she understood that there was somebody who cares for her even if she doesn't want to talk about it. But at least there is somebody who shows that I love her. I think that was the best part. When she would see that I care and I still love her and she can trust me if she wants to but I couldn't force her."
After Mthoko' s brother's baby was sick and was diagnosed with AIDS, his brother and his wife were tested and he later learnt that they were infected. His brother moved away from his family. "He didn't want to involve them in his story," said Mthoko. He went to live with the mother of his baby. The brother refused to tell Mthoko himself that he was HIV-positive: "He didn't want to talk about it."
PretenceIDenial
Some participants were hesitant to confront a loved one about their status or to talk to them about getting tested, so they put up appearances that they did not know the status of
their loved one. Bathoko suspected that her sister was ill with AIDS but no-one in her family addressed the issue. She said:
She was 28 or 29. She was a very strong person... This thing started when she fall pregnant. Something was going wrong. She was very weak. .. We were taking care of her but we were wearing protective things. She's got something that she is hiding... Three weeks after the child was born, she (Bathoko's sister) died. The child also died after four months ... She was afraid to tell the truth....She didn't tell us. She kept it a secret from us. But she told her friends .. .If a person doesn't want to tell you exactly what it is, what can you do about it?
When her best friend died, Felicity said: "Nobody mentioned a word about HIV. The thing is when somebody does not talk about it, everyone is scared just to come up front and talk about it. Her family at the end of the day knew it was HN." Inthe same vein, Besta observed:
There are a few in the family who have symptoms but they still are not saying anything... It's very clear they are HIV .. .I don't actually blame them. But I just say to myself that maybe it's time because all diseases kill, although this one is worse. But I just don't blame anyone as I just think it's time. It's life.
Tuli and her mother did not talk about her sister dying. "We knew she was going to die," Tuli remarked. "Sometimes when things are painful, you don't want to talk about it, so ... there was an understanding." What occurred more frequently was denial that a loved one was dying of AIDS. Even though Nomusa had HN herself and had already lost two sisters to AIDS, she had a tough time acknowledging that her brother was infected. She said: "At this moment, I am worried about my brother. Initially, he complained of stomach pains. After some time, they found acid and they drained it out.
And even after it had been drained out, the pain continued." When asked if she thought
he could be HIV-positive, she replied: "I don't know ... His wife is fine The child is looking fine ...I really thought he is maybe hiding something from us maybe it's something else."
When Nomusa found out her daughter was HIV-positive, her husband refused to accept the results. She tearfully recalled: "The worst part of it is that I spoke to the father who just denied everything... And then, I thought, if it is this much difficult for him to understand, how is my family going to take it?" The baby's father disappeared shortly afterward. He got married in a year and he died a few years before his daughter did.
Similarly, when Prudence found out that her infant son was HIV-positive, her fiance (the father of the child) had a difficult time accepting it. She said: "At first, he was denying everything. He was in a state of denial. He said: 'No, but my son is healthy and I know you took a test before. '"
Dons, an educated woman, had not recognized that her brother had AIDS even though she had lost her husband to the disease. She claimed to be very close to her brother and expressed shock upon learning that he had died of AIDS, even though he had been very ill and "in and out of the hospital." She said: "I found out late... People are not educated about AIDS. If I had known, I would have helped him, visited him, counseling him - to give him hope, medicine. I would have encouraged his wife to be supportive."
Azon, who had been sick for some time and had tested HIV-positive some years back, still questioned his own status. What was interesting was when I asked him if he had lost anyone recently, he said a 25 year old cousin died four months ago, and when I asked the cause of death, he said: "I don't know, maybe AIDS." So Azon clearly recognized the symptoms of AIDS in other people - as he had them as well, but it was hard for him to accept that he too had AIDS. He did not know the status of his two daughters and one had just given birth. When asked whether he thought they should get tested seeing that he was HIV-positive and his wife had died of AIDS, he replied: "I am not too sure."
Azon still clung to the belief that he could be HIV-negative and said: "I want to go back and get tested."
Just before her brother disclosed to her, Ragani said: "At that point, he could barely walk ... He was really so weak ... When he died, he weighed 38 kilograms." She
acknowledged that she had been in denial: "I just kept brushing it aside and said, 'No, it can't be! Not my brother!'"
Tuli claimed that she and her mother had no idea that her sister could be infected:
We didn't know she was HN-positive because she was pregnant and she had a baby with a caesarian section. But the thing is that she had problems and the illness didn't get cured. She was in and out of hospital and she wasn't disclosing anything... she wasn't saying anything. So we just thought the doctors had made mistakes, so we were telling her to sue the doctors. Most of the time, she spent in the hospital and it was getting worse day by day. Nobody suspected HN. Infact, withHN, if it strikes in the home, you don't think it'sHNbecause you always have the feeling that it's for people who don't behave well, and I know my sister - she was a one man woman ....So I never associated her sickness with HIV.
Closed Awareness
Nomusa refused to tell her nine year old daughter that she had AIDS and the same was the case for Ragani and her six year old niece she cared for. Both participants wanted the girls to live as normal a life as possible and they felt that telling them they had AIDS would be too disruptive. They did not discuss the issue of dying either. However, Ragani sensed that her niece knew that death was near:
The little one didn't know what was wrong with her. Just two weeks before she died, we were lying together in bed. She looks at me and asks, 'Ragani, am I going to die?' I was unprepared but we did know a question like that might come up some day. So I told her, 'We all have to die, but now is not your time.' Itwas so strange she would ask this question two weeks before she died, as though she knew something was happening to her!