The background characteristics of the qualitative study participants are summarised in table 1. A total of 41 women and men living with HIV/AIDS participated in the qualitative study; the majority of which (56%) were female. More than half (51%) were young adults aged below 40 and less than half (44%) were on ART. Other summary statistics of the socio-demographic characteristics of the qualitative sample are described in Table 1.
Table 1 about here
We present detailed analyses of our findings along two broad subheadings; namely: 1.Circumstances and motivations of HIV testing; and 2. the actual HIV-testing experiences (the good, the bad and the ugly).
HIV testing: Circumstances and motivations
During our interviews, PLWHA reported a variety of circumstances and motivations for undergoing an HIV test. The two most common reasons given by PLWHA for undergoing the HIV test is that they requested an HIV test following frequent illness and recurrence of symptoms (25/41), and that an HIV test was offered during the course of a routine antenatal testing or health care visit (10/41). Most respondents reported that they went for the test because they had HIV-like symptoms or were experiencing frequent illnesses.
INTE: How did you come to know your status?
VC03: I came to learn about it in December 2006. I suspected myself after a series of illness episodes and then decided to go for the HIV test. I used to suffer from fatigue, often feeling like I was running out of energy. I was also suffering from frequent bouts of malaria, headaches, fever, joint pains and feeling nauseated. There were also sores in my mouth. That is why I went for medical advice (cohabiting woman aged 36).
A number (8/23) of women respondents came to learn of their HIV status when they went for antenatal care. According to testing protocols, pregnant women in Kenya are offered an HIV test as part of their antenatal care. In this case the HIV test is done at the same time as other routine antenatal tests. This is intended to prevent mother to child transmission of HIV because in the absence of any intervention an HIV positive woman can pass the virus on to her baby during pregnancy, birth or breast milk.
INTE: Let’s now talk about how you learnt of your HIV Status.
VB06: It was in 2007 when I was pregnant with my last child. It [pregnancy] was two months old. I had gone to confirm if indeed I was pregnant at matter hospital. They tested my urine and confirmed that I was pregnant. Then they asked me if I could go to the VCT and I agreed. The results turned out to be HIV positive.(Cohabiting woman, aged 35)
Testing during antenatal care was one of the routes by which spouses came to know their HIV status. Women who tested positive were sometimes asked to bring their spouses to the clinic for HIV testing and PMTCT service guidelines in Kenya call for couple testing and partner involvement in the services (26).
Other common motivations included perceiving themselves at risk for HIV infection especially upon having a family member test positive for HIV. Some respondents explained that having an intimate partner diagnosed with HIV affected their HIV risk perceptions and decisions to get tested. Such respondents began to question their HIV status when their former or current sexual partners died of HIV-related conditions or suspicious circumstances.
INTE: When did you get to know that you were HIV positive?
VC11: After my first wife died of AIDS in 2005, I thought on my own volition to go and get tested just in case I had the [HIV] virus… because you know nowadays you could be sick and fail to know what you are suffering from. Then later on I sweet-talked my other wife to also go and get tested and she agreed and we got tested.(married man aged 46)
The transcripts also revealed that they also wanted to know their status if their spouses became sickly or started experiencing recurrent sickness that are associated with HIV/AIDS.
HIV-Testing experience: The good
Both the provider and client-initiated HIV testing in Kenya share three core principles: Consent, confidentiality and counselling (3CS). The guidelines in Kenya prescribe that HIV testing must be accompanied by pre-test and post-test counselling (Ministry of Health 2008b). Several participants explained that they were tested in compliance with the HIV testing guidelines and protocols. Narratives of those who went on their own volition to the VCT centres almost exclusively paint a picture of receiving counselling prior to testing. Some respondents expressed satisfaction with their VCT experience.
(VB10): I found another doctor who counselled me very well and I agreed to go for the VCT. When the doctor counselled me, I got encouraged and well prepared for the outcome of the VCT. I was tested and found to be positive. The result did not surprise me at all because she [doctor] had made me see how life would continue even if I was found to be positive. So when they confirmed it [HIV], I just said it was fine. As long as there are drugs, I would just continue with (taking) drugs, but I did not worry much. The fear I had initially had gone after being counselled well. (Married man aged 43)
The contents of comprehensive HIV counselling revolve around general information about the HIV condition, the meaning of a test result, preparing the client to receive the test, and how to conduct themselves thereafter, whether they test positive or negative. Some of the information given during counselling included how to live with HIV and other sexual and reproductive health matters
INTE: Were you counselled before taking the test?
VC03: The nurse counselled me and told me about the availability of drugs that people with HIV were using. She told me that if I took the drugs well and avoided frequent sexual contact with men, I would live for long, and sure enough I have lived all this while thanks to that. She also advised me to always use condoms.(Cohabiting woman aged 36)
Testing, even when self-initiated, is not an autonomous individual voluntary decision; it is often done in response to some triggers such as illness or prompts from healthcare workers and significant others. That is, arguably, one of the main reasons why individual-based VCT model has not raised the level of testing in SSA as nearly 80% of HIV infected adults in SSA are unaware of their status despite VCT promotion (4).
HIV testing: The bad
Fears abound that the routine provider-initiated HIV testing may not guarantee all the 3 three tenets: consent, confidentiality and counselling. Some respondents reported lack of adherence to the 3 principles prior to testing. Some respondents who had gone to seek healthcare for a different illness reported that informed consent was not sought and given before they were tested for HIV.
VA13: I was tested for HIV in 2007 when I went to hospital for treatment for a different disease.
INTE: What exactly did he [doctor] tell you before testing?
VA13: No, he didn’t tell me anything. I was tested everything, urine and blood, but not told anything. Just a letter to Dr.[name withheld] for further action (widower aged 46).
Similar to when testing was done during conditions of health concerns or severe illness, it is not very clear, from some women’s accounts, that informed consent was sought and given during routine antenatal testing. Some women even perceived HIV testing during antenatal care to be compulsory, without any opt-out options.
INTE: How did you come to know that you were HIV positive?
VA14: I was never sick; I just went for antenatal care when I was pregnant and was tested at that time.
INTE: What did the doctor tell you before?
VA14: So when the doctor took my blood is when I knew I had it [HIV].
INTE: Did he just take your blood? Or he asked you… telling you he was going to test for what?
VA14: You know when we went there we were told it was a must that everybody knows their status, and then he took the blood.(Never married woman aged 22).
Routine testing of antenatal attendees is meant to identify HIV positive would be mothers so that they receive PMTCT to prevent vertical transmission of HIV. As the narratives show, not all women undertake the test with informed consent. If pregnant women are given the opportunity to opt-out of HIV testing by providers, some are likely to do so. A study in Tanzania showed that about half (49%) of women attending ANC clinics preferred to be given the drugs for preventing vertical transmission rather than learning their HIV status (27).
HIV testing experience: The ugly
There is evidence from the narratives of testing experience to show that some testing was done without observing any aspect of the 3 Cs principles. Some respondents in this study reported that they were tested without their knowledge and express permission. They also reported that they were neither provided with pre-test counselling, nor post-test counselling:
INTE: Can you please tell me how you came to know that you were HIV positive?
VA08: It was in May 2002. I was pregnant when I got tested at [name of clinic withheld]. But they did not tell me. At that time things were so bad, not as they are right now. These days you are called and counselled well before being told your status. Those who tested me did not tell me anything. They just talked in English thinking that I did not hear what they said, but I did.(widow, aged 36)
INTE: Who advised you to undergo HIV testing?
KB07: Nobody did. In fact the person who tested me first at [name of clinic withheld] did not even inform me that he was carrying out an HIV test. He just came and told me that I was HIV positive.
He asked that I be tested for TB, which was also found to be positive. I was referred to the [name of clinic withheld] where I was tested again and they confirmed the results. (Widower aged 60)
INTE: And then what did he (doctor) tell you?
VA13: He told me that "now you are like this". He told me that I had the HIV virus.
INTE: Did he counsel you before he told you the results?
VA13: He did not counsel me or tell me anything before. He just told me like that.
Lack of informed consent and counselling prior to or after HIV testing is not only a violation of an individual’s rights, but is also a lost opportunity for behavioural change information to avoid future HIV infection – and if already infected, prevent transmission of the HIV virus to others. The effect of HIV counselling in reducing subsequent risky sexual behaviour has been demonstrated by various studies in SSA (28,29).