According to FGDs, KIIs and in-depth interview, people got to know their HIV status in contexts of personal or illness of a spouse, medical emergencies (such as rape or accidents), blood donation, suspicious and abnormal signs and symptoms, ante- or post-natal care, death of a spouse or parent (in case of youth infected by their mothers), miscarriages or still-births, during early preparations for marriage, peer influence (especially for the youth) and as a response to VCT campaigns targeting the general public.
A majority of the FGDs, KIIs and in-depth interviews concurred, however, that the main circumstance under which people learnt of their HIV was illness; either personal illness or that of a spouse, child or close family member. Such illnesses often led to personal suspicion of HIV infection. In a majority of cases, these illnesses were serious and prolonged and in a number of cases led to death of a spouse. In Table 3-2, the circumstances under which in-depth interview participants were diagnosed as HIV positive are presented.
Table 3-2: Circumstances under which PLHIV knew about their HIV status
Circumstances Female (n=30) Male (n=19) Total
Due to personal illness 16 14 30
Due to spouse’s illness 6 1 7
Due to ante-&post-natal care 5 0 5
As a response to public health campaigns 2 3 5
Others 1 1 2
Total Responses 30 19 49
78 Though each experience was unique, there are four main situations that prompted the respondents to know their status. These four main circumstances are the following: personal illness, illness or death of spouse, antenatal care and response to public health campaigns that encouraged people to know their HIV status. Detailed accounts of the main circumstances of knowing HIV status are presented sequentially in the next sub-sections.
3.3.1 Personal Illness
Personal illness was the main circumstance under which the majority of the respondents got to know their status. About three-fifths of the in-depth interview respondents (n=30; 16 female and 14 male) knew of their status due to a personal illness. A remarkable feature of these illnesses was their protracted nature. Most of the respondents had suffered from a recurring illness that could neither be reliably explained nor effectively treated. They would be sick on-and-off for extended periods of time. In most cases, diagnosis came at moments when the respondents were admitted to hospital and an HIV test was a recommended by a doctor as a way of helping determine the underlying cause of the recurring illnesses.
According to a male respondent:
I got to know it when I was very sick. In fact I was sick. I would be coming to the hospital, I would have headache and slight diarrhea, and I would constantly come to the hospital. When I would be given some little drugs, enough drugs, it would dissipate and disappear but after some months it would recur. So I became very ill to the point that I was bedridden (R29:
married male, age-group 18-25; 5).
A female respondent had this to say:
How I got to know that I had HIV, initially, it really gave me great problems when I used to fall sick on-and-off, but I would not go for medical care. So when it reached sometime, this herpes zoster attacked me on this side. So it is at this point that I went to another hospital -Chulaimbo. So that is where they did for me counseling and they also tested me. So after testing me, they told me the nature of the results. So when the results came, it revealed that I was HIV positive (R15: married woman, age-group 36-45; 3).
Within the FGDs, personal illness also emerged as the main circumstance leading to a diagnosis with HIV. The FGD participants mentioned that most people, including themselves, got to know their status when they had been ill and sometimes after several episodes of illness and admission to hospital. One female FGD participant had the following to say:
79 In most circumstances you will find that someone is down, bedridden, is when they get tested. Especially when they visit the health facility for other reasons is when they get tested and know their HIV status (FGDFY-009, 6).
The key informants seemed to concur with the assumption that most cases of diagnosis occurred in the context of personal illness. One key informant commented that: “under circumstances is when people are sick, when someone is admitted or visited a health facility, or PITC and VCT” (KII-003, 3).
The suspicious and unexplained symptoms for which people sought treatment included fatigue, swellings on the body, slight headache, and feeling chilly in the evenings. Another notable finding at diagnosis was co-infection with multiple disease conditions. In some cases, the participants were suffering from more than one opportunistic infection. The main diseases mentioned included malaria, tuberculosis (TB), typhoid, diarrhoea and pneumonia. A person could be infected with TB and typhoid or with malaria and diarrhoea simultaneously. As the above quotations indicate, most of the sick persons had been bedridden or were incapacitated and had to be admitted to a hospital for some time.
3.3.2 Illness or Death of Spouse
Some of the in-depth interview respondents (n=7; 6 female and 1 male) got to know their HIV status either when a spouse fell ill and was admitted to hospital or when they had lost their spouses to death. It is noteworthy that the majority of those knowing their status due to the illness or death of a spouse were women (6 out of 7). In cases where a spouse was taken ill and an HIV test was recommended, the respondents were asked if they would also be interested to know their status. The following excerpt from a female participant is typical of the cases involving the illness of a spouse.
What made me know that I had HIV, my husband was sickling, and he became so ill to the point that he became bed-ridden. So we came here to Russia and he was admitted to the ward (R48: widow, age-group 36-45; 3).
Mostly, these respondents had accompanied their ill and disabled spouses to the health facilities for medical care. As can be noticed in the next excerpt, in a number of the cases, the sick spouses were not in a position to even consent to an HIV test being conducted on them.
After being admitted to the ward, he was asked if he had already known his status. But he could not be able to talk, so I am the one who took the risk and told him…we were asked that
“would you like to know our status?” and I responded that “I would like to.” That “both of
80 you the two of you”, [and I responded] yes. Then his [blood sample] and also my blood was taken. So after they had been taken, when the result came back, it came back that he was positive and I was also positive (R48: widow, age-group 36-45; 3).
The accompanying spouses had to give consent on behalf of their spouses in cases where the spouses were incapacitated. In such cases, they either consented to personally receiving the test at the same time or opted to come for testing at a later date.
Some participants got to know their status when they had lost their spouses or when they had lost their infants. These deaths were in circumstances that necessitated the seeking of some explanations. A young male FGD participant had this to say:
I had lost my partner, that is when I decided that…and I also had rashes on my mouth.
That is when I decided that “this one, let me try the VCT and first and then see what happens.” When I went to try this [testing] is when I was found to be positive (FGDMY-004, 16-18).
3.3.3 Antenatal Care
Diagnosis with HIV also occurred in the context of ante-natal care. Some of the female participants, who in most cases neither suffered ill-health nor suspected themselves to be HIV positive, only got to know their HIV status when they attended a clinic for ante-natal care. It is a requirement in Kenya that women attending ante-natal care be routinely tested for HIV.
This testing requirement is aimed at reducing incidences of mother-to-child transmission (MTCT) of HIV to the unborn babies. As the interview excerpt below indicates, the respondent got to know her HIV status when she went to the clinic for pregnancy related health-care.
How I got to know my status, I was pregnant. Then I came to the clinic normally like any other women, then here at Russia [JOOTRH], women who are expecting must go through an HIV test. When the test results were released, I got to know that I was HIV positive (R47:
married woman, age-group 36-45; 3).
Five (5) female in-depth interviewees, or one-tenth (10%) of all in-depth interview participants, were diagnosed HIV positive during antenatal care. FGDs corroborated the finding that ante-natal care was one of the circumstances under which a number of women discovered their HIV status. One female participant in an FGD reported that:
81 I also came to know about it [her status] when I was pregnant. When I came when I was pregnant, I was informed that I had to be tested. I was found to be infected. I knew that it is at that point is where I will begin life. It is only my condition that has changed but life has not come to an end. I accepted and the baby is negative.
In three out of eight FGDs, participants mentioned that women who attend ante-natal clinics are tested as a measure to prevent or reduce vertical transmission. In one FGD with women of child-bearing age, 5 of the 6 participants were diagnosed HIV positive during pregnancy.
3.3.4 Public Health Campaigns
Some in-depth interview participants (n=5; 3 female and 2 male) were persuaded to get to know their status from public health campaigns aimed at promoting uptake of voluntary testing and counselling (VCT). Of the three female and two male participants, the women’s decision to take up an offer to be tested in a public health campaign was purely voluntary.
According to a 36-year-old widow:
We went for testing in 2006—a testing campaign was brought here at Nyamaroka …So when we went—I had not become suspicious about my life, I was just okay. So when I went and we were tested then the test came out that I was HIV positive (R5: 36-year-old widow, 3).
Two male participants who got to know their status as a result of such campaigns, were triggered by some underlying cause. They had experienced or witnessed some symptoms in their bodies similar to those mentioned in a public health promotion as being possible signs of infection with HIV. This made them to decide to offer themselves for testing. The following statement from a 36-year old male is illustrative:
There were sometimes when it reached evening hours, I would feel cold and I imagined that it was even malaria. So I would take medication. It would cool down but it would recur. So one day, there was an outreach near Arina so I said “let me just go and test today”. So when I was tested, I turned out positive (R44:36-year-old, married man).
Among the young male FGD participants, a number opted to be tested and voluntarily walked into a VCT. Compared to those who are older, more young people were inclined to seek voluntary testing and counselling. One FGD participant had the following to say:
The way I got to know my status, I was having, I was having friends. And the way I could hear my friends telling such stories, one day those, those, those people [mobile VCT] came there at Jua kali (open air workshops). There is a day they came there to Jua kali, and then they put a tent there….The way they put a tent there, we also just went like a joke. That is
82 where I was tested and later I was found to be positive. Then the other day, I came here at Russia and I was tested again and later I was found to be positive (FGDMY-005, 22).
Generally speaking, the respondents in this study got to know their status within the framework of four key events in their lives. These ways included personal illness, illness or death of a spouse, antenatal care, and through response to a public health campaign. The most important reason was personal illness whereas the least common reason was response to public health campaigns. Testing took place in a variety of facilities and settings and this is considered next.