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Abstract
Objective To understand the influence of voluntary counselling and testing (VCT) and an HIV-negative result on subsequent sexual behaviour; and to identify the specific felt needs of those testing negative.
Design Serial interviews, 6 months apart, with people who had tested negative, and three one-off focus group discussions with counsellors. Interviews were transcribed verbatim and analysed thematically. Paired transcripts were analysed longitudinally.
Participants Purposively sampled from first attenders for VCT who had tested negative.
Setting Four health-facility affiliated VCT centres in two mining towns in the Copperbelt Province of Zambia.
Results Participants in the 42 initial and 31 follow-up interviews understood VCT as ‘testing for HIV’. Most participants reported having adopted safer sexual behaviour months before attending VCT. They had already recognised personal susceptibility to HIV infection and reported engaging both emotionally and cognitively with the issues of testing. Ultimately attendance at testing was to know their status in order to regain control of their lives. Unmet post-test support needs were common and included additional information, supportive networks, life-skills training and access to recreational activities.
Conclusions In this population who tested HIV negative the majority said they had made life changes months before attending VCT. Counselling served to consolidate pre-test decisions about risk behaviour. Those testing HIV negative are underserved compared with those testing positive. We recommend that counselling for HIV should be de-linked from testing to encourage earlier attendance for counselling and that clients testing negative should receive more post-test support to help them remain HIV negative.
- Africa
- developing world
- health belief model
- HIV testing
- service development
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By 2009, 33.3 million people were living with HIV, and 2.6 million were newly infected.1 In Africa the number requiring treatment outstrips supply. Zambia, a landlocked country in sub-Saharan Africa with a 2010 projected population of 13.2 million,2 has an HIV prevalence of 14%.3 Recent advances in treatment and scale-up in male circumcision potentially contribute to prevention; however, risk behaviour change remains the cornerstone of HIV control.1
Affordable antiretroviral drugs have spurred the scale-up of access to voluntary counselling and testing (VCT) services as a strategy for both HIV prevention and case finding.4 VCT, like most other HIV interventions aimed at producing safer behaviour, has been shown to be inconsistent as a prevention strategy to produce anticipated behaviour change. While there is some evidence that VCT for HIV reduces risky sexual behaviour (unprotected sex and the number of sexual partners) for those testing positive, its impact on those testing negative is not clear.5 6 Two meta-analytical studies on HIV VCT effectiveness found that HIV VCT resulted in a significant change in sexual behaviour among HIV-infected persons but not among non-HIV-infected persons.4 7 These differences may reflect shortcomings in VCT for HIV-negative individuals, or the influence of the test result rather than the counselling and testing.5 6 As is being explored in the cancer screening literature, and as shown among gay men in Scotland, a negative test might also be falsely reassuring to clients, who might then discount subsequent symptoms or continued risk exposure.8 9 Few studies have investigated the relationship between VCT, the receipt of a negative test result and sexual behaviour change in heterosexual individuals.
In seeking to achieve national treatment targets, greater emphasis has been placed on VCT as an entry point to treatment and support for those testing positive.4 This has resulted in an inadequate response to those testing negative, in whom post-test support is generally limited to an offer of follow-up counselling. More than 50% of those who test are negative.10 Therefore, understanding the effect VCT and an HIV-negative result has on sexual behaviour change is important to the development of an effective intervention for the majority.5 11 We set out to gain an understanding of the influence of an HIV-negative result on attitudes, intentions and self-reported sexual behaviour, and the felt support needs of people living with an HIV-negative result in an urban mining area in Zambia.
Methods
One of the authors (JS) conducted serial semistructured interviews, 6 months apart, with people who had tested negative at VCT, and facilitated three one-off focus group discussions with counsellors between October 2007 and August 2008. To maximise the diversity of perceptions, participants were purposively sampled from four VCT centres in two mining towns in the Copperbelt Province of Zambia.12 Participants were recruited from self-presenting clients, testing for the first time, and testing negative on the day. Following the VCT session, clients were informed about the study by the counsellor conducting the session. Those willing to participate were provided with information, and requested to sign a consent form.
Initial interviews were conducted immediately following the VCT session. Follow-up interviews were conducted face to face 6 months after the first to assess self-reported sexual risk behaviour change and support needs. Participants whose views might have been different were deliberately sought to confirm or disconfirm findings. Focus group discussions were held with counsellors to get their perspectives on the service they were providing and participant's needs.
All interviews were digitally recorded, with previous consent, downloaded to a secure PC and transcribed verbatim. Interviews in the local language (Bemba) were translated into English. Themes within the data were identified, analysed and reported using thematic analysis aided by the qualitative data analysis software, Nvivo7.13 14 Cross-sectional analysis of all datasets was conducted to identify common themes, and paired transcripts were analysed longitudinally to assess change over time.15 Transcripts were read and re-read and an initial coding framework was drawn up. This was extended and modified as additional transcripts were read. This framework was reviewed in line with the aims of the research and the coding framework, which was used to re-code all the transcripts drawn up. Themes were then identified from the codes, reviewed and analysed to develop a conceptual framework. One of the authors (JS) coded all the transcripts, some of the others (SAM, MM and LG) read a number of transcripts and coded a randomly selected sample to ensure that the themes identified by the first author (JS) were also identified by themselves. A good agreement occurred in most cases and differences were discussed and resolved through highlighting and integrating potential themes.
Results
Seventy-six per cent (42/55) of the clients approached were interviewed. Ages ranged from 18 to 53 years. Most of the employed men were mine workers. The follow-up rate to second interview was 74%, and those lost to follow-up shared similar characteristics to the retained group (see table 1). Twenty-nine (69%) people reported practising safer sexual behaviour for 6 months or more before testing. Table 2 shows the distribution of stated sexual behaviours in the 6 months before testing. Three focus group discussions were conducted with a total of 25 trained and practising psychosocial counsellors. Participant details are provided in table 3.
Participant characteristics
Reported sexual behaviour according to gender and marital status 6 months before initial testing
Characteristics of focus group participants
Factors facilitating and inhibiting the HIV test decision-making process
Deciding to attend VCT was a complex process. Three themes were prominent in the decision-making process: recognising susceptibility; emotional and cognitive engagement; and an increasing need to know their HIV status.
Personal experience of symptoms, seeing the effects of HIV/AIDS on family and friends or exposure to HIV/AIDS sensitisation materials served as cues to risk recognition:
‘My aunt was diagnosed last year that she is HIV positive. Then I also have friends who died of the same disease so I wanted to know. All these things that were happening were prompting me to come. I see it every day, people talking about it, people dying of the same disease.’ 27-year-old man (single) 1st interview
Men identified risk factors, such as alcohol use, peer pressure and myths about male sexuality and HIV vulnerability:
‘Coz most of the time when I drink I like following up girls, when you are drunk if you see a girl, you always think of having sex with her.’ 20-year-old man (single) 1st interview
‘It is all about peer pressure, the pressure from peers actually that's where it comes from.’ 27-year-old man (single) 2nd interview
‘I was only twelve to thirteen years that's what I was being told “ah you, if you won't do this, after 15 years then you'll stop even erecting”.’ 23-year-old man (single) 2nd interview
Married women talked of being at risk due to their husband's extramarital sexual behaviour:
‘I started thinking of coming for the test because I noticed that my husband's behaviour was not good. He has many women, so I am worried.’ 43-year-old woman (married) 1st interview
Recognising the risk of exposure to infection triggered a protracted emotional and cognitive engagement with the question of testing, but recognition of susceptibility was hindered by denial, and by the beliefs that ‘to know you are positive hastens death’ and that one is negative because one's partner tested negative.
For some the decision-making process resulted in a resolution to reduce the number of partners, use condoms or abstain from sex. Fourteen (48%) of the 29 people who were practising safer sex before attending for VCT reported implementing risk-reduction strategies during the decision-making phase, before coming to the decision to test:
‘He likes women too much so I was afraid he might infect me with this disease, HIV, so I thought it is better he lives on his own and I live on my own.’ 48-year-old woman (separated) 1st interview
‘It has just been in my mind (testing for HIV) since the last time I had sex (thirteen months ago). I've been trying to come here and have a test done. I didn't use any protection. I've been worrying myself, troubling about AIDS.’ 20-year-old man (single) 1st interview
During this period of ‘soul searching’ fear of a positive result deterred people from attending for VCT:
‘It has taken years (seven), but the first time I engaged in casual sex, just the following week I wanted to go for VCT, I just decided not to go, I even took the step then I felt bad, “I think I know I'm positive”.’ 27-year-old man (single) 1st interview
The decision-making process was ultimately facilitated by a number of factors including sensitisation materials, the desire for peace of mind, the desire to regain control and the availability of antiretroviral drugs, which promised the possibility of life even with a positive result:
‘I felt that I cannot continue living like this, I should know how my body is and then when I know how it is then I can know what to do next.’ 22-year-old man (single) 1st interview
‘There was hope that there are ARVs that's why I had an encouragement that I'll keep on living positively because I'll be taking medicines.’ 29-year-old man (single) 1st interview
The focus groups corroborated these findings:
‘The purpose of encouraging people to go for VCT, one of them is to make them have a free mind.’ Data management officer, male, focus group 1
‘They (clients) are increasing in number…’ Nurse, female, focus group 2
‘They know there are ARVs.’ Nurse, female, focus group 2
‘Because they know at least even if I am positive I will go and get the ARVs.’ Nurse, female, focus group 2
Most participants viewed VCT primarily as a diagnostic tool. VCT was perceived as ‘testing for HIV’.
‘Is it where you can know your status, whether you are sick or you are not sick?’ 26-year-old man (single) 1st interview
Effect of counselling and testing
Empowerment and control were the main themes identified in the analysis of the effects of counselling and testing. Counselling improved understanding of and provided new knowledge about HIV/AIDS, provided skills in condom use and reinforced previous knowledge and behaviour:
‘I've come to understand a lot of things concerning the way the disease is transmitted, I knew very little.’ 29-year-old man (married) 1st interview
‘I used to hear about them (condoms) on the mine, but it was at the counselling where I learnt how they help, that's where I got to understand them.’ 24-year-old man (single) 2nd interview
Although risk perception increased after counselling, misunderstandings about HIV transmission persisted and so did the perception that condoms encourage promiscuity:
‘What I am thinking has saved me, it is because our blood is different; if it was the same maybe I could have contracted the disease.’ 19-year-old woman (single) 1st interview
‘The use of condoms just increases the disease. It promotes womanising because people think it's ok since they can use condoms.’ 34-year-old man (divorced) 2nd interview
The negative test result reduced anxiety and provided a new ‘lease of life’ providing resolve to maintain or implement life change, plan for the future and educate others about HIV/AIDS and VCT:
‘It's like you have committed a crime and then you are sentenced to death and then fortunately the President says “this person should be released”. It's like you have already seen the point of death there and then you are told you are free now. You wouldn't love to go to the same, to commit the same crime.’ 25-year-old man (single) 2nd interview
Post-VCT most people reported intentions of continuing to abstain, being faithful to one tested partner, using condoms and not sharing razor blades. A few planned to marry.
Challenges and needs after VCT
In the 6 months post-testing, most people claimed to have maintained and implemented intentions reported at the initial interview. Married women were constrained by their culturally defined roles that denied them power to have control over their own sexuality:
‘Sometimes I would refuse (sex), he would get annoyed and sometimes even chase me from the house, the elders would talk to me telling me that it's not supposed to be like that, I should allow everything since we are married.’ 30-year-old woman (married) 2nd interview (referring to time before testing)
Perceptions of masculinity coupled with peer pressure worked against the young mens' attempts to implement safer sexual behaviour:
‘Like the way I've experienced after testing for HIV is that you don't just want to be like as if you are not part of them because almost everyone is out there partying and stuff so it's really challenging.’ 20-year-old man (single) 2nd interview
Reported needs focused on additional in-depth information on HIV/AIDS transmission, prevention, regular reminders to safeguard their negative status, involvement in HIV/AIDS prevention programmes and activities to take up idle time:
‘What I need more is something that can empower me just to be negative. That would just be in the form of discussions even reading books even posters.’ 23-year-old man (single) 2nd interview
‘I think what would have helped me to…, my life to be easier is like um maybe going out sporting, more of games to play just to keep me busy.’ 20-year-old man (single) 2nd interview
The focus groups confirmed the lack of support for people testing HIV negative and corroborated support measures identified by the interviewees.
‘But I think our concentration has been on looking after the positive than the negative. I think it's a weakness in our service because we've been just concentrating on the positive ones and following them up.’ Nurse, female, focus group 2
Discussion
Attending for VCT involved a complex series of decisions and actions influenced by various factors. In this mining community, more than two-thirds of the participants reported adopting safer sexual behaviour 6 months or more before testing. People testing HIV negative had specific support needs that were largely unmet compared with those who tested positive.
The qualitative longitudinal design permitted an in-depth exploration and understanding of the process of change over time and factors facilitating and hindering this process.16 The focus groups permitted a comparison with providers' perceptions of the service, and a fuller understanding of the participants' contexts.17
The main limitation of this study is its reliance on self-reported sexual behaviour. Apart from re-call bias, people may not tell the truth due to reasons such as social desirability or anxiety with a face-to-face interview situation.18 19 Responses may have also been unduly influenced by the status of the interviewer as a previous mine doctor.20 21 However, self-reports of behaviour can be reliable in such contexts.20–23 In the current study, accounts of behaviour change given in the first interview were consistent with those given 6 months later, and some participants did not conceal failure to implement stated intentions.24 A deliberate effort was made to maximise the reporting of sexual risk behaviour by assuring participants of confidentiality, anonymity and the freedom not to answer sensitive personal questions.
It is possible that the group lost to follow-up may have been a higher risk group; however, this is unlikely as there were no major differences between the groups.
The decision-making process involved in voluntary testing for HIV is not well defined.25 Studies in Africa and elsewhere have shown those who recognise they are susceptible to HIV are more likely to attend for testing than those who do not.26 27 There is little work on understanding the processes leading from recognising risk to coming forward for a test. A phenomenon identified in this study that may hinder the recognition of risk is that of inferred negativity whereby people believe they are negative because they consider their partner is negative.28 This is important to consider, as such beliefs can potentially lead to exposure to infection with HIV, which education can address.
The African literature is scant on users' understandings of VCT. In western Uganda HIV counselling and testing sessions were viewed as an opportunity to know HIV status rather than as an opportunity to understand more about HIV.29 In Zambia people's understanding of VCT was limited to the provision of serostatus and locations for testing.30 This study supports these previous studies suggesting that people attend VCT primarily for testing. If people understood that counselling alone may be available (without having to test), to clarify some of the questions they battle with in the decision-making process, they might decide to attend VCT sooner. Earlier understanding of the advantages of testing may then lead to earlier testing.31 The automatic association of VCT with routine testing may be an unintended and unrecognised consequence of the way VCT has been marketed in that sensitisation materials encourage people to go for VCT to know their status.32
Although sensitisation and promotion activities targeted at the community may be effective in raising awareness and encouraging self-perception of risk, this and other studies suggest that such activities may not provide sufficient information for the individual to understand fully the need for testing.33 Provision of interactive community-based opportunities for learning about HIV/AIDS, which are not necessarily linked to testing, may facilitate understanding, encourage testing, behaviour change and reduce stigma.24 The motivation to promote HIV awareness and testing, reported by those testing negative, can be harnessed to facilitate community sensitisation programmes. Stigma has been identified as a common disincentive to testing.34 35 Although stigma was not overtly reported as a hindrance to testing in this study it may have been a factor in the protracted decision-making process.
VCT is considered a catalyst for behaviour change. However, our findings suggest that for most people behaviour change occurred months beforehand. This finding has important implications for the theoretical underpinnings of VCT. A VCT conceptual framework proposed by Denison et al4 posit that counselling and knowledge of HIV status provide motivation for individuals to adopt safer behaviour. We suggest that many people engage cognitively with the risk of having HIV and change their sexual behaviours before attending for testing.
Early, easily accessible and understandable information, given in a counselling situation that is not attached to testing, may be more effective in influencing behaviour change. Providing VCT within a comprehensive package of care that takes into account the information needs of the pre-counselling, counselling, post-counselling and testing stage should create an opportunity for enhancing VCT effectiveness.36
Future research
Our finding that most people presenting for VCT who subsequently test negative for HIV have already started to change behaviour should be confirmed. This premise also needs to be tested among those who test positive for HIV. The dynamics of behaviour change pre-testing and post-testing should be explored in diverse groups and different models of VCT should be trialled. Few studies have examined the felt needs of HIV-negative people. An understanding of what helps and hinders people in implementing or maintaining intentions of adopting safer sexual behaviour is essential for the identification of effective interventions. More work is needed to identify interventions that could respond to these challenges. Strategies to help individuals remain negative, such as SMS 'phone messaging, should be explored. Finally, social policies and a legal framework that will underpin interventions aimed at supporting young people better to avoid infection and addressing equity and gender issues should be tested and evaluated.
Conclusion
Two important findings emerged from this study. First, most participants reported having made life changes six or more months before attending VCT. Counselling served to consolidate pre-test decisions about risk behaviour, rather than initiate them. De-linking counselling from testing and encouraging earlier attendance for counselling and information may be more effective at promoting and supporting behaviour change. Second, those testing HIV negative are underserved compared with those testing positive. Identified needs, such as recreational activities, and further HIV/AIDS education and participation in HIV prevention activities should be addressed.
Key messages
VCT identifies those who are HIV positive who can then access treatment and advice about healthy living.
The effect of receiving an HIV-negative test result at VCT on subsequent sexual risk behaviour is uncertain.
In this study most people had purposefully adopted safer sexual behaviour many months before testing, which provided additional impetus to maintain safer sexual behaviour.
The needs of people testing HIV negative are relatively neglected. This group of people have specific needs post-testing for in-depth HIV/AIDS knowledge and continued support.
Acknowledgments
The authors are grateful to all who participated in this study, and to the British Commonwealth, scholarships and fellowships plan for funding. They also thank Dr Ray Brettle and Dr Dan Clutterbuck for providing much useful input and feedback for the design and write up of the study, respectively. The authors also thank Macmillan Cancer Support for supporting DJC.
References
Footnotes
Funding British Commonwealth, Scholarships and Fellowships Plan.
Competing interests None.
Patient consent Obtained.
Ethics approval This study was conducted with the approval of the University of Edinburgh and the University of Zambia.
Provenance and peer review Not commissioned; externally peer reviewed.