University of Zambia Medical Library

HIV Testing and Counselling as a Prevention Method (November 1996 by Maria de Bruyn)

The paper begins with a review of three circumstances in which testing and counselling are considered a prevention method (before blood donations, as part of out- patient clinic services, and voluntary HIV testing and counselling). Possible limitations to testing and counselling as a prevention method are then enumerated, with special attention being given to new trends concerning "home HIV testing". The paper concludes with recommendations on NGO support for testing and counselling as a form of prevention work.

Introduction -- Non-medical prevention of HIV/STD infections is basically approached in three ways:

• information campaigns that provide basic facts about HIV/STD transmission and prevention; the focus is on increasing knowledge
• education and communication programmes designed to help people develop and maintain healthy behaviours and change practices that entail transmission risks; here the focus is on attitudes, motivation and commitment
• counselling (often combined with HIV testing) on risk factors and possibilities for risk reduction, in which the focus is on supporting action.

Beardsell notes that testing and counselling (TC) is promoted as a prevention method on the basis of two assumptions: TC is correlated with behavioural change and behavioural change will be greatest among those who test HIV-positive.

Three basic circumstances may be distinguished in which TC is considered a prevention method: prior to blood donation, as part of out-patient clinic (e.g., antenatal or STD) services, and voluntary HIV testing and counselling (VTC).

Testing and Counselling of Blood Donors:
Testing of potential blood donors often focuses on reducing HIV transmission through transfusions rather than educating people about prevention. Donor screening ideally should include pre-donation counselling - or at least education - on prevention while simultaneously determining whether the donor has a recent "risk history". In the latter case, s/he is encouraged to self-defer, i.e., refrain from donating blood [2]. Such screening is needed for two reasons: 1) donors may test negative if they are in the window period of HIV infection; and 2) some people may "donate" blood as a way of finding out their HIV status.

Documented experience:
Blood screening procedures are said to have minimalized HIV transmission through blood transfusions in industrialized countries. In developing countries, however, perhaps 5-10% of HIV infections still occur this way due to inadequate blood screening systems.

In many cases, blood donor testing is not accompanied by counselling of any kind. Donors may not even be routinely informed about their serostatus, although policy guidelines state that they all have a right to receive their test results [3]. For example, in rural Malawi, transfusion blood is requested from patients' relatives and friends. They are only told that their blood will be checked for compatibility, which is interpreted to refer to blood groups rather than serostatus. Testing is a very sensitive issue and - despite indications that in some places 25% of blood donors may be HIV-positive - people will avoid testing at all costs. Introducing "testing" with counselling might decrease people's willingness to donate blood.

In other places, potential donors are simply questioned about exposure to risk factors so that the transfusion service can decide whether to exclude them from donating or not. Often this is done by having the potential donor fill in or sign a printed form after reading a leaflet about risk factors, although in at least one case transfusion service authorities have rejected blood from a particular ethnic group (Ethiopians in Israel).

A general consensus seems to be emerging from the literature that the factors helping most to reduce HIV transmission via transfusions are: reducing the number of transfu- sions given, recruitment of voluntary donors among "low-risk" groups, and testing coupled with deferral of donors reporting risk factors. A study in Zimbabwe comparing three strategies - testing, donor deferral, and donor deferral followed by testing - showed that the combination strategy was most cost-effective.

If screening procedures do include counselling, they can offer opportunities for prevention work. The Uganda Blood Transfusion Service suggests that its TC programme may have prevented 5400 new HIV infections yearly versus 18,800 infections prevented by other means [8]. Some 60,000 people have attended talks given by blood donor recruitment officers while more than 2000 young people have obtained continuing support for maintaining a negative serostatus through "safe blood clubs".

Even offering TC to donors may not eliminate risks, however. In Zimbabwe, where free voluntary TC (VTC) is not available, the National Blood Transfusion Service (NBTS) offered potential donors the opportunity to choose between confidential VTC and donation of a unit of blood [9]. Despite an overall 14.8% HIV prevalence, only 1.9% of blood donors chose VTC; 8.7% of them were HIV-positive versus 14.9% of those who donated blood. This led the NBTS to conclude that offering VTC at the time of donation may be perceived as stigmatizing donors as "at risk" so that this procedure would not likely reduce contamination of blood supplies.

It may be questioned whether blood screening can be considered an appropriate situation for preventive testing and counselling to prevent sexual transmission of HIV. Offering TC openly may discourage people from donating blood; moreover, most blood transfusion services do not have the capacity to offer counselling. Nevertheless, in some circumstances a service could perhaps offer some basic information to potential donors. For instance, in a rural Malawi hospital, patients' (donor) relatives who are waiting during operations are given the opportunity to watch videos about AIDS.

Testing and Counselling as Part of Out-Clinic Services:
Despite the links between tuberculosis and HIV infection, VTC has not been integrated into most TB programmes yet. A study carried out in Haiti in 1992 evaluated community-wide screening for HIV linked to a TB control programme [10]. It suggested that persons at high risk for HIV infection selectively sought or accepted TB clinic screening; moreover, many persons with active TB were identified earlier than they would have been without the HIV screening. The researchers did not provide post-test counselling, however, and therefore could not state whether testing and counselling might have contributed to behavioural changes. In Malawi, the mission hospitals have trained TB workers in counselling techniques through the primary health care programme; this has not occurred in government hospitals, however.

The opportunity to undergo HIV testing as part of antenatal care is routinely offered by an increasing number of clinics and hospitals. The rationale is that women who learn they are HIV-positive can be encouraged to refrain from further childbearing and/or have abortions (where legal), so that they do not transmit the virus to their children. In addition, women who choose to continue their pregnancies can be offered methods to reduce the risks of perinatal transmission. Antenatal clinics also serve as sentinel surveillance points in many countries and testing is not voluntary. In these cases, women may or may not be informed of their results and/or be counselled. In some places, HIV testing of pregnant/delivering women and/or newborns has been made mandatory. A US law passed in May 1996 stipulates that, by September 1998, states must either reduce the paediatric rate of HIV/AIDS by 50% (compared to the 1993 rate), show that 95% of women who had at least two antenatal visits were tested for HIV or must implement mandatory testing of newborns. If they do not meet one of the three above criteria, they will lose federal funding. New York State has already passed a law requiring mandatory testing of newborns (but does not require counselling nor does it provide funding for such testing). The American Medical Association moreover adopted a resolution on mandatory testing of pregnant women and newborns, albeit that they do recommend counselling. Cooper, of Fordham University's School of Law, has noted that such legal measures requiring testing (and/or counselling) must be protested within the framework of human rights:

• The human right to privacy means that no undue burden may be placed on women; definite advantages for the government (which could override this right) remain to be proved.
• The right to equal protection negates the validity of such laws: women may not be discriminated against as a class.
• The right of parents to make medical decisions for their children is negated by such laws.

Documented experience -- Antenatal clinics:
In Rwanda, two-thirds of pregnant women tested for HIV after intensive pre-test counselling voluntarily requested their test results [14]. More than 70% of the women counselled thereafter wanted their partners to be tested but only half of the HIV-positive women intended to inform them about their own serostatus, mainly due to fear of abandonment or family conflicts. Six months later only 6% reported regular condom use, probably for that and the following reasons: a desire for more pregnancies, beliefs concerning the importance of transfer of body fluids, etc., and a fear of condom use.

Another Rwandan study which offered VTC to women recruited at antenatal and paediatric clinics reported somewhat better results. At two years' follow-up, 23% of the sexually active women were using condoms; those who had discussed condom use with their partners were 20 times more likely to be users than the women who had not. Discussions about condom use took place most often, however, when both partners had been tested and they turned out to be discordant.
In Burkina Faso, a study was done among 135 women at an antenatal clinic to determine their receptiveness to HIV screening [16]. Four said they would not find such a test useful or would refuse it but 96% said they would accept testing. Two antenatal clinics began offering HIV testing in January 1995. Up to 2 June, 88 of 916 women had refused to take a test: 0.8% refused pre-test counselling; 8.8% refused to take a test after counselling; 90.4% accepted testing. Among the reasons given for refusal were:

• a need to think about it further
• not feeling at risk
• fear of discrimination (especially among those not of Burkinabe nationality)
• the husband having all authority on decisions regarding family life
• a commonly felt fear of AIDS as such.

• may lead to violence against the women involved
• will not offer much benefit as no medications are available for treatment or to prevent perinatal transmission
• probably will not influence the spread of HIV as many counselled women will not inform their partners or change their decisions about having children in future.

While more emphasis on testing couples and helping women talk with their partners about test results might increase the number of women who volunteer for antenatal TC, two other factors may nevertheless impede its effectiveness as a prevention method. First, it may be questioned whether pregnancy is an appropriate time to undergo testing and counselling since it is likely to cause tension and psychological distress.

Second, as long as a majority of women in developing countries are economically dependent and subordinate to men, and a strong emphasis remains on reproduction as essential to a woman's status and role, many women will ignore or be unable to implement advice about avoiding pregnancy even if they are HIV-positive.
A study in Zaire showed that one year after TC, only 20 and 17% o the HIV-positive and HIV-negative women, respectively, were using condoms; 6 and 8%, respectively, had become pregnant again [24]. Research in Rwanda confirmed this trend. One year after TC, half of the HIV-positive and one-third of the HIV- negative women had discontinued hormonal contraception use [25]. After two years, 43% of the HIV-positive and 58% of the HIV-negative women were pregnant; 40% of the women living with HIV wanted to have more children. As Mwaikembo, a paediatrician in Tanzania, has observed:

"Women feel pressured to have sex in order to reproduce and must balance avoiding sexual transmission of HIV with fulfilling expectations to bear children.

In essence, 'to have children is not a choice but a cultural obligation.' Childless couples face a series of harassments: they may be despised, looked down upon and face abuse and loss of respect; this may lead to domestic violence and divorce."

In her own counselling practice, these factors lead almost all her clients to take chances o pregnancy; 90% tell her they want to think about the risk of HIV transmission, even if they already have children because "the more children you have, the more acceptable you become". She further noted that men also face constraints; if they turn women down, they may face the chance of being labelled impotent.

STD clinics:
TC of female STD clinic attenders faces many of the same problems encountered at antenatal clinics. If women are to avoid future infections, they must ask their male partners to use condoms or stop their extramarital sexual practices. A 15-month study of low-risk poor women attending STD clinics at five health centres in Delhi, India, confirmed this [27]. Of 10,740 women, 1255 were tested and five were HIV-positive. Counselling was done in 617 cases. The women did not react except to information about the risks of perinatal transmission. Fifty per cent knew and accepted their husbands' extramarital relations; 70% of husbands admitted to high-risk behaviour and few blamed their wives for STDs but condom promotion was a total failure.

The women said they had no ability to control their partners' behaviour and there was no point in their talking to the men about it. They asked the educators to talk to the men so on World AIDS Day, community leaders helped mobilize unemployed youth to put on plays and do condom demonstrations (separately for men). The men were very responsive and almost 90% reported being treated for STDs by private practitioners. A two-day workshop was therefore organized for non-allopathic practitioners. The project came to the following conclusions:

• Religion may prove to be a more acceptable channel for providing education.
• Both men and women must be included and STD treatment/education must be provided via family welfare services.
• Projects must not get entangled in issues of women's empowerment: we must give information to women concerning how and where they are now.
• Projects must get other agencies to provide for women's basic needs: if they value life more, they may be willing to consider STD protection.

Reports focusing on male STD clinic attenders are few in number. One control-group study in Malawi included 60-74% male respondents over a four-month period [31]. Overall STD incidence fell from 100 to 12% among counselled patients after four months, compared to 77% among the controls. The counselled persons also decreased their number of partners while the controls increased theirs.

Counselling Before and After Voluntary Testing : Counselling of persons voluntarily considering an HIV test centres on assessing their risks, their knowledge about HIV/AIDS and the potential implications of a positive or negative test result. If the clients can be characterized as members of the "worried well" group, there may be some scope for talking about the need to prevent HIV transmission. In other cases, however, clients may come in for counselling and testing when signs and symptoms of HIV infection are already present; such clients may be much more concerned about confirming their suspected HIV-positive status and how to cope with it than about learning how to protect others against infection.

In some countries, churches and other institutions are encouraging (or sometimes demanding) that prospective marriage partners undergo pre-marital testing. In Thailand, the Ministry of Public Health has launched a campaign for voluntary HIV testing before marriage, while the Thai Population and Community Development Association received funding from the EC for a project that invites couples who are registering their marriages to consider HIV infection risks. Data from interviews with 120 couples reached by the pilot project in two provinces showed that 48% of husbands and 60% of wives chose HIV testing (with 30% of wives convincing their husbands to be tested as well).

The rationale for such policy measures is that if one or both partners test HIV-positive, they will take this into account when considering whether to have children or not. As pointed out above, the wish to have children may be very strong; knowledge of a positive HIV-status will often not lead to a decision to refrain from childbearing. Moreover, given current gender roles and norms, it will frequently be women who suffer the consequences. If a man learns that his potential bride is HIV-positive, it is not unlikely that he will simply call off the wedding and marry someone else. On the other hand, if the man tests positive and his wife negative, the wedding may still take place, either due to pressure from relatives or because the man does not inform the woman of his serostatus.

Two other points must also be considered. First, sexual intercourse prior to marriage is quite common in many countries; when potential spouses are tested before marriage they might therefore be in the window period. Second, a common reaction to positive HIV-test results in one or both partners will be cancellation of the wedding. This means that the right to marriage of persons living with HIV/AIDS (PHAs) will be negated. Also, an increasing number of couples who might have wished to marry may simply live together without benefit of legal guarantees. In Phayao Province, Thailand, it is reported that premarital testing has almost become a "new tradition"; in most cases, the marriages are cancelled if test results come back positive.

In cases where couples voluntarily consider pre-marital testing, al of these potential consequences should form the focus of pre-test counselling. The content of counselling offered after HIV testing will differ somewhat according to the test outcome. In the case of positive results, at least initially the emphasis will be on providing psychosocial support and helping clients cope with the news. Attention may be given to advising PHAs on how to avoid re-infection and transmitting the virus to others, but clients may only be receptive to such information once they have worked through their problems and concerns for the future.

In the case of a negative result, there is much more scope for preventive counselling. Although clients may be advised that they could be in the window period of infection, the emphasis can be how they can avoid the situations of risk to which they had been exposed. In assessing how to minimize their own risks, they will also be enabled to help avoid transmitting the virus to others.

Post-test counselling for PHAs may also include advising them on partner notification, either through provider referral (contact tracing) or patient referral (self-referral) [35]. In both cases, clients are asked to provide the names of sexual partners to whom they may have passed on HIV or an STD; either they and/or the counsellors may encourage the partners to come in for testing, so that they can receive preventive counselling in their turn. Cases in which partners have been summoned to attend a clinic are known but such a compulsory approach is not to be recommended.

Documented experience:
Much of the research done on VTC has assessed behaviour change among persons who have tested HIV-positive or discordant couples. The latter studies indicate that TC does lead to safer behaviours among stable couples. For example, one study in the USA of 144 couples showed no seroconversions after 193 couple- years of follow-up, with both condom use and abstinence increasing over time, while a study in Zaire which involved intensive counselling of couples showed only 3.1 seroconversions/100 person years of follow-up.

Fewer studies seem to have followed up persons who test HIV- negative. One case ontrol study in the USA did focus on risk behaviour among women who tested HIV-negative. The researchers concluded that past behaviour may better predict risk patterns than counselling since, at 3 months' follow-up, 75% of the women remained at the same level of risk as at baseline.

Based on the literature, it seems that post-test counselling which includes substantial inputs may be more effective in encouraging safer behaviours than a few individual counselling sessions. For example, HIV-positive people in Bangkok who received more intensive post-test counselling via an out-patient clinic reported fewer sexual partners and more condom use than persons receiving less counselling. However, only 11% of the out-patient clinic clients knew the HIV status of their steady sexual partners, indicating a continuing lack of communication between couples.

VTC offered to couples by an AIDS research project in Kigali, Rwanda, in 1991-1992 included an informational/motivational video and group discussion. All 466 couples who requested tests agreed to testing after counselling; 80% of concordant egative and 62% of concordant-positive couples returned for their results, providing a good opportun- ity for risk reduction education according to the researchers. A programme in Zimbabwe, which offered information, medical advice, referrals and some limited material support, found that seropositive clients did take some action to protect others from HIV infection and to prevent STD infections and pregnancy. However, condom and contraception use remained erratic, in the case of women because of opposition from their partners and, for both sexes, because they feared disclosing their HIV status due to stigmatization, making it hard to discuss safer sex.

When VTC programmes are linked with broader IEC programmes, the effect can become even greater. An organization with several years' experience in VTC as a prevention method is the AIDS Information Centre (AIC) in Kampala, Uganda [8, 42, 43]. Clients visiting the AIC are counselled before HIV testing. If they later turn out to be HIV-positive, they are referred to TASO and a Post-Test Club (PTC). If they are seronegative, they are referred to the PTC. In 1993, the PTC had 14,000 visits (46/day) at a cost of $30,000/year; 56% of the clients were men and 62% were HIV-positive.

To assess PTC clients' prevention behaviour, an interview study was done. Reported sexual abstinence was high: 49% at 6 months (higher among women). However, this declined over time. Condom use increased (more than 40% were using condoms by 6 months, more than 82% during their last sexual encounter). Only 8% reported having non-steady partners. The influence of social norms and membership in the group seemed to be high. By 6 months:

• 99% knew people who abstain from sex
• 99% knew people who use condoms with many partners
• 84% knew many people using condoms in casual relationships
• almost all talked about AIDS
• 90% had shared their personal stories (via the Philly Lutaaya Initiative or on their own)
• 66% of the HIV-positive and 87% of the HIV-negative members had given condoms to non-partners.

In Lusaka, Zambia, Kara Counselling and Training Trust offers VTC to the general public and sells condoms at counselling sessions [44]. Interviews with clients before pre-test counselling, at post-test counselling and 6 months later indicated that:

• 40% of the HIV-positive men chose to practise abstinence
• HIV-positive women chose abstinence, but not as often as men
• HIV-negative women showed a significant decrease in abstinence
• HIV-positive men had fewer partners
• HIV-negative men showed no significant change regarding number of partners
• both positive and negative men reported significantly more condom use
• both positive and negative women used condoms more
• no changes were seen in STDs
• less than 50% could tell their partners
• less than 10% regretted having the test
• TB therapy was offered and 38% of the PHAs took it.

Possible Limitations to Counselling as a Prevention Method -- The nature and goals of counselling :
Two factors distinguish counselling from IEC. First, people may be more willing to seek prevention information from IEC programmes because they can do so anonymously. Counselling, on the other hand, may be associated by potential clients with the dangers of stigmatization and discrimination due to possible breaches of confidentiality.

Second, counselling has dual goals. While IEC programmes are concerned mainly with prevention (and perhaps combating stigmatization and discrimination), counselling (especially post- test for HIV-positive individuals) not only focuses on prevention but even more so on providing psychosocial support.

These dual objectives contain an inherent tension. Many counselling manuals, guidelines and training programmes are disease- rather than person-centred, i.e., they focus on information provision (thereby detracting from the support function according to some. On the other hand, many reports on counselling programmes emphasize the demonstrated benefits in helping people cope, implying that - in practice - more attention may be focused on giving psychosocial support. When the counselling burden becomes too great for counsellors - for example, due to heavy caseloads or counsellors' feelings of powerlessness to help clients solve problems related to poverty - simple information provision may ultimately form the content of counselling sessions. For this reason, counsellor training and support systems are extremely important.

It is not unlikely that those who seek testing and advice are much more focused - at least initially - on addressing their own concerns and problems than on considering how they may protect others. Some have even noted that negative test results may provide clients with a false sense of safety so that they continue risky behaviour [1]. In a Brazilian workshop offered to potential cohort study participants (men who have sex with men) and health professionals of anonymous testing centres, it was found that a "negative" test result reduced participants' risk perceptions during role-plays. "Positive" results, on the other hand, were often followed by feelings of guilt and low self-esteem; negotiation of safer sex practices took place independently of the role-played test results.

As noted above in the context of antenatal TC, perhaps the most preventive benefits can be expected when sexual partners are tested together [50]. To achieve this, it may be necessary to offer several pre-test counselling sessions until both partners agree. Then, rather than offer test results individually, the partners would ideally be counselled together, if possible accompanied by other trusted persons from their personal networks who have agreed to "shared confidentiality". This was done in a counselling model developed for Malawi. There, pre-test counselling may be done several times until a "significant other" can be included in the counselling process so that the test results can be shared with him/her during post-test counselling. The counselling process in this model continues to involve the family and ultimately the community. Simultaneously, community mobilization is encouraged through interactive education programmes so that by the time individuals or couples decide to be tested, a supportive environment has been created wherein shared confidentiality is a realistic possibility.

In any event, the preventive benefits of TC remain unclear and it is uncertain whether they can be proved at all. As is the case with IEC, it is difficult to pinpoint precisely which factors motivate people to practise safe behaviours (e.g., the decision to get tested, counselling itself, information campaigns, media reports, knowing someone personally who is living with HIV/AIDS, etc.). Moreover, there are methodological problems in assessing the possible preventive effects of counselling which only a few studies have addressed. These include:

• a lack of control groups (which may be opposed on ethical grounds)
• insufficient attention to time factors (preventive effects may be greatest shortly after counselling and decline over time) - differences in counselling given to people who test positive or negative (the former often having on-going sessions while the latter may only have one pre- and post-testing session)
• motivations for TC (e.g., leading to some self-selection biases and consequently tendencies towards behavioural change or, alternatively, tendencies to avoid testing at all).

Joinet has observed that [58]:
"...people who need advice and support will rarely turn towards a health worker who is a stranger, often young and from another cultural tradition, when it is a matter as complex as a change of life style, attitude or behaviour."

It is conceivable that clients would sooner accept support in dealing with psychosocial problems (e.g., planning for the future, providing for their children, seeking help with wills, etc.) than information on prevention from counsellors. The hierarchical relationship between counsellors and clients may lead clients to perceive information provision as "sermonizing"; if this takes priority over meeting client needs, the relationship may be broken off. On the other hand, in cases where counsellors have some success in meeting needs, a basis of trust can be established in which interpersonal communication does help clients maintain healthier behaviours.

HIV testing methods:
In most cases, there is a delay between testing and communication of the outcome to clients. Experience shows that a considerable number of people do not return for their test results, which limits the scope of preventive counselling. On the other hand, this time gap does make it possible for clients who have had pre-test counselling to consider the information given and to prepare themselves (insofar as possible) for receiving the results. Developments in the field of HIV testing are now heading in directions that may eliminate this interim period and/or circumvent counselling altogether, however.

Rapid tests:
Work is progressing on rapid HIV tests whose results are available within a matter of minutes. As WHO states, this "will mean that clients may be informed of the results of positive HIV tests before they are emotionally and psychologically prepared to absorb the news...Policies will therefore be needed to ensure that all clients r eceive adequate pre-test counselling before they are informed of the result of any HIV test". One study in the United States indicated that this may not always be possible. A Single Use Diagnostic System (SUDS) HIV-1 assay, which offers results in 20 minutes, was tested in combination with counselling at an STD clinic (mostly Black clients) and an anonymous testing clinic (ATC: mostly White clients). Review of 100 sessions at each clinic showed that less time was spent counselling those who were negative. All those found HIV-positive received their test results versus 90% of those following the standard protocol (which involved separate visits for testing and receiving test results).

Counsellors were at first reluctant to use the SUDS system, being sceptical and fearing that both they and clients would undergo additional stress because there was no extra time to prepare emotionally for telling/receiving results. Their final reaction was favourable. The STD clinic staff found it more efficient and the ATC liked having time to counsel patients while they waited. Neither clinic saw adverse reactions among clients found to be HIV- positive. The amount of preventive counselling decreased, however, so it may be surmised that use of such tests could make it even more difficult to integrate prevention messages into counselling sessions. On the other hand, in many developing countries where clients must travel considerable distances to have testing and counselling, provision of same-day results would be an advantage. Steps would have to be taken, however, to ensure good- quality counselling both before and after testing and counselling training would have to be adapted to take this into account.

The AIC conducted a field trial using a rapid on-site HIV assay in Kampala to assess changes in the proportion of clients who learned their serostatus and client acceptance of same-day test results. Of the clients who tested HIV-negative, 100% of those undergoing the rapid test learned their serostatus and received post-test counselling compared to 80% of those who needed to return for test results. The percentages for those who tested HIV-positive were 100 and 77%, respectively. The researchers did note that up to 3.5% of test results could be false- positives, indicating a continued need for confirmation tests. As only 16% of the rapid testees returned for the results of a non-- rapid confirmation test, they concluded that a second rapid confirmation test may need to be used.

Client acceptance appeared high: 98% found the counselling good or excellent, all understood the results (though only 93% believed them), 85% of those who had been tested before preferred same- day results and 76% were willing to pay more for same-day results. Self-administered tests

In addition to rapid HIV tests, self-administered HIV tests are now becoming available, whereby a distinction should be made between home collection kits (a person collects a sample, sends it to a testing centre and then phones in for the results) and home "indi- cator" tests (a person reads the result at home, like a home pregnancy test). As WHO notes, such tests could be especially welcomed in countries where discrimination on the basis of HIV is widespread since people can avoid all chances of others discovering their HIV status. Others also note that this will help shift the balance of power from health professionals to clients. Frerichs, a strong proponent of home tests, further argues that they are needed for the following reasons:

• Self-protection: if one partner doesn't know the other is infected, infection may occur.
• Self-caring: now that early treatment in the asymptomatic stage (e.g., reduction of viral loads whereby immunity is improved) is available, it is to people's advantage to know if they are HIV- positive. Also, they can avoid contact with opportunistic infections and prevent transmission to their loved ones.
• People want such tests.
• Clinic-based VCT programmes are ineffective at early detection and even HIV-infected persons who come to clinics for tests often do not receive their results.
• Clinic-based VCT programmes have low population coverage and are too expensive for government funding of widespread early detection unless there is prior personal screening (i.e., to weed out the "worried well").

Who will pay for this phone counselling and what kind of training and accreditation will be given to the phone counsellors?. Some also surmise that widespread availability of home tests could diminish the funds made available for treatment, care and counselling programmes.

Even if information is included in test leaflets - for example, explaining that a confirmation test is needed for certainty - it can be assumed that many buyers will not read or understand it. Another problem is that many people who do not understand the concept of the window period may use the tests incorrectly (e.g., rushing out for a test after one night's risky behaviour). Schopper has noted other drawbacks to home tests:

• The accuracy of home tests is low: they may be all right for surveillance but have too low a sensitivity for diagnosis. Moreover, assessments of sensitivity with the available tests have been based on readings which were not done by lay persons.
• Regarding test interpretation, more false-positives will probably appear in low- preva- lence regions and more false-negatives in high-incidence areas.
• There is uncertainty about test quality (e.g., influence of transportation and storage on the tests themselves and the quality of the samples used).
• How can we be assured that the same control mechanisms applicable in the countries where the tests are produced will be implemented in the countries where the tests are sold? This would be the first time that people could "diagnose" a life-threatening, chronic and fatal disease so that control mechanisms are even more essential.
• The availability of home kits raises human rights questions. It may become possible for partners (especially men) to coerce their sexual partners into taking such a test (especially in the case of saliva tests). There is a further danger that such quick tests might be used at border controls, by police and employers.

• Can we obtain tests that are simple, accurate, easy to read and of the same quality as lab tests (in order to eliminate as many false- positive and false-negative diagnoses as possible)?
• How can we ensure proper advertising and labelling? How will instructions explain the window period and how to obtain counselling?
• How can we determine whether home test users would have gone to a clinic anyway for a test?
• How will people respond to test results without a counsellor present? What are the determinants of responses to test results?
• Will the availability of these tests undermine VCT clinics?
• Will these tests be affordable for those at greatest risk?
• How can we ensure that the tests are not abused? What about black/grey market tests?
• Will governments and programmes be willing to give up mandatory reporting and surveillance?

In terms of coverage, counselling can of course only reach a limited number of people, leading Ungphakorn to conclude that preventive counselling should supplement but not replace education. Community members may also consider this fact, as shown by a comment from a participant in the TASO evaluation in Uganda: "TASO should come out with programmes of educating the public instead of waiting for people to get infected and counsel...". On the other hand, where VTC centres are in operation, they may be helpful in reducing the numbers of people who "donate" blood as a way of finding out their HIV status.

Discussion and Recommendations:
Some suggest that VTC should be promoted on a wider scale so that it will gain more scope as a prevention method. They also feel that promotion of VTC can help destigmatize HIV/AIDS. Frerichs argues, for example, that:
"If simple, inexpensive tests for HIV become widely available, many HIV carriers will be known to others. At present, the image of HIV is so poor in most societies that people want merely to hide their infection from public view...we need to get at the source of the problem and both change the public's view of HIV infected persons and make tests for early recognition more widely available. HIV can be easily avoided, once potential sexual partners or blood recipients know who is infected."

Recognizing that simply knowing one's HIV status and receiving counselling is often insufficient to induce behavioural change, Good goes a step further by suggesting that testing be used as a prevention monitoring tool. He proposes that testing be linked to tangible incentives that will reward people for preventing the spread of HIV: contracts would be made whereby couples, families and communities agree to stay "HIV-free" in exchange for awards such as vouchers for school fees, new wells or boreholes, feeder roads, connection to the national electricity grid, etc. Testing of participants every six months or so would form the indicator for success. As such programmes have not yet been implemented anywhere, cost- benefit assessments cannot be made. Questions may also be posed as to the suitability of linking incentives to poverty, which is one of the factors making people vulnerable to HIV in the first place.

The usefulness of VTC as a prevention method is still not clear but the following conclusions and recommendations could be drawn:

• While testing should always be accompanied by pre- and post- test counselling, counselling programmes do not need to involve testing. Moreover, where feasible, some HIV/STD counselling training should be integrated into existing family planning, mother- child health care and TB programmes, with appropriate follow-up.
• The degree to which VTC induces safer behaviours has been difficult to demonstrate (with perhaps the exception of discordant couples). Counselling programmes should therefore be primarily evaluated regarding their capacity to provide support and improve care of people directly affected by HIV/AIDS. - Blood testing programmes obviously help prevent HIV transmission through transfusions but probably play a minor role in preventing transmission through other routes. Given the capacities of most blood transfusion services, it is probably not feasible to promote intensive preventive counselling programmes there. Some simple information provision strategies for donors could be considered.
• VTC of antenatal clinic attenders does not appear to be a very effective prevention method. In order to reach women of reproductive age, counselling should rather be supported at family planning and MCH clinics and independent VTC centres.
• HIV testing could be offered as an option for STD clinic attenders but - due to the costs involved - the emphasis should be on counselling with regard to HIV/STD risks and prevention.
• Everyone should have the right to know their HIV status and to obtain personalized help in decision-making about precautionary measures. "Independent" VTC programmes therefore deserve some support, provided that the emphasis in pre-test counselling is on personal risk assessment and prevention rather than encouraging testing, while post-test counselling should be linked with broader IEC programmes and community-based care and self-support programmes. A condition for support could be the levying of at least nominal testing fees, perhaps on a sliding scale basis, although in very poor countries this will decrease the number of clients.
• VTC programmes should attempt to involve sexual partners (couples) insofar as possible, paying attention to helping improve communication between partners about broader sexual health issues. A basis for this would be the establishment of some links with programmes that are addressing gender-based problems.
• Financial support to VTC centres, hospitals and clinics for acquiring the newer rapid and inexpensive HIV tests could be considered, provided the tests are used only in connection with well-developed counselling programmes.
• Funding for self-administered tests should be avoided. However, when such "home tests" become more widely available in developing countries, consideration could be given to increasing funding for counselling programmes as well as telephone hotlines in order to ensure that self-tested persons have somewhere to turn for advice and support. In addition, funding should be made available for research investigating the use of home tests (buyer motivations, understanding of the test and results, willingness to change behaviours, access and use of counselling services).

Last updated August 27, 1997

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