HIV testing ought to be voluntary and individuals ought to personally decide as to whether they would like to be tested or not (National AIDS and STI Control Programme / (NASCOP), Ministry of Health and Sanitation, Kenya, 2010). Additionally, testing requires that a person gets into contact with health care facilities where such services are offered. Alternatively, one could get such services from mobile testing platforms (e.g. mobile VCT). The mobile VCT services are offered as part of a public health effort to help reduce HIV infection. Early HIV diagnosis is important as it allows for early enrolment into care and treatment.
In this study, the decision to take an HIV test could however be made on behalf of the person needing it, especially if this person is incapable of making such a decision due to illness. This was mostly the case for people taken to the health facilities by family members. The decision to be tested could also be influenced by friends, relatives or prompted by the health care workers (PITC) when the symptoms or ailments one was suffering from gave reason for them to suspect infection with HIV. This was the case for recurring ailments that defy treatment.
The main decision makers or influencers are indicated in Table 3-5.
Table 3-5: Main person making or influencing decision for HIV testing
Decision Maker for Testing Female (n=30) Male (n=19) Total
Self 14 8 22
Health care provider/personnel 8 6 14
Family members/relatives 3 4 7
Friends & others 2 1 3
Total 30 19 49
85 As indicated in Table 3-5, there were four main categories of people who influenced a PLHIV’s decision to be tested for HIV. The participants could either make the decision by themselves or were influenced by health providers, their families and relatives or by friends or other acquaintances and work colleagues.
3.6.1 Decision made by Self
Nearly one-half of decisions for testing made by in-depth interview participants (48%; n=46) were made by the participants themselves. Of the 22 in-depth interview participants who made the decision to be tested by themselves, 14 were female whereas eight (8) were male.
The following statement from a female participant who knew her status in the context of an ill spouse was common:
How I got to know, first of all my husband was ailing. So I carried him and brought him for testing. We really struggled over this with him. So later when he was overwhelmed with the illness, he accepted. So when he went, he was found to have HIV. This also gave me the courage [to do the same] and I said that “let me also go for testing, because sometimes if you have, perhaps I also may be having it.” So when I went for testing, I found that I was having [HIV] (R9: widow, over 46 years old, 3).
Nearly one-half (6) of the 14 women were prompted to make the decision for testing due to husband’s illness and admission to hospital or death. Three women made the decision in response to a public health outreach while two other women due to their own recurring illness. In all the three cases, public health information worked in combination with other factors such as concern for the well-being of their children and underlying symptoms of HIV.
For three women, their decision was related to their children. One of these women had suffered a miscarriage. Public health education and concern for children’s wellbeing prompted the other two to get to know their status.
For five of the eight male participants, their decision to get tested arose from their constant on-and-off sickness. Two male participants had been tested earlier and did not accept the results and lived in denial for some time. They did not also take steps to inform their wives about their test results. In one case, a male participants lived for four years after diagnosis with HIV and only opened up to the wife when the wife got tested positive in the context of ante-natal care. Mostly, the decisions to go for testing were as a result of a trigger such as a public health outreach coupled with symptoms of sickness or on-and-off illness.
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3.6.2 Decision initiated by Health Workers
The next most important source of decisions for testing were influenced by the health care personnel. The health workers accounted for nearly one-third (30%) of all decisions to be tested for HIV. The following excerpt is illustrative.
They requested me…if I could accept to know my status—because when I was coming [to the hospital] I did not know anything [was unconscious]. So after I got better, they came and asked me [If she would accept an HIV test] (R1: married woman, age-group 26-35, 13).
A total of eight women and six male participants were influenced in their decision to test for HIV by health care workers in the health facilities where they went to seek medical attention due to illness. Among the women, five out of eight decisions were based on recurrent illness, whereas three were based on ante-natal care. Of the six male participants, five were urged to consider taking an HIV test after recurring illness episodes. Only one male participant was tested after the death of a spouse coupled with the death of a child. In Kenya, PITC is one of the actions recommended for health service providers to help strengthen the national response to HIV as most people only know their status in the context of debilitating illness.
3.6.3 Decision influenced by Family/Relatives
Family members and relatives influenced decisions in 15% of the cases among whom three (3) were female and four (4) were male. All the seven respondents were those who knew their status in the context of personal illness. The decision for the four male participants was either made on their behalf or they were urged by their siblings to go for testing. Three of these male participants were influenced by a brother and one by a sister. For the three women, one was influenced by a step-mother, the other by the mother and in the last case, by a cousin.
Following is a statement from a participant whose decision was influenced by a brother who is a medical doctor.
Then my brother whom I follow,—he is a doctor—he told me that “you know, gentleman, as far as this sickness of yours is concerned, I would like you to go and be tested for HIV so that you can be enrolled on medication.” Then I came. The time when I was coming, they tested me, and I was found to be HIV positive (R29: married male, age-group 18-25, 5).
These family members and relatives were concerned about the constant on-and-off sickness of these relatives. They were therefore interested in helping them get a definitive diagnosis to help them explain or understand the reason for those recurring illness episodes.
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3.6.4 Decision influenced by Friends and Others
Friends and other factors accounted for 7% (3) of all decisions. Of these three cases, two were female. Whereas one male participant and one female participant were advised by a friend to seek testing for cases of recurrent and protracted illness, one female participant was tested as an occupational requirement by her employer. A male participant who got influenced by a friend had this to say: “When I was sick and I was just sick on-and-off, then a friend of mine—he had known his status—told me that, ‘this sickness which is affecting you, try and go and know your status’” (R33: male, aged 46 years and above, 3).
Peer influence was also mentioned by some young male FGD participants. One male FGD participant had this 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 came here at Jua kali…we also just went like a joke. That is where I was tested and later I was found to be positive” (FGDMY-005, 22). After diagnosis, PLHIV reacted in a number of ways. The next section addresses the initial reactions of PLHIV to their diagnosis.