(introduction...)

The most effective interventions to reduce transmission from mother to child depend upon a woman knowing her HIV status, and that in turn depends upon the availability of information, counselling and voluntary testing services.

It is not necessary to wait until the full range of services is on offer before integrating HIV-related information, counselling and voluntary HIV testing into routine pregnancy care. At the very least, women can be provided with information about reducing their and their partner’s exposure to HIV infection, and about avoiding unwanted pregnancies. Health professionals can also ensure services before and during delivery that minimize the child’s exposure to HIV infection.

Pre-test information and counselling and post-test counselling will differ according to the needs of the client. The following sections discuss issues that should be considered in pre-test counselling for individuals and couples. The post-test information and counselling needs of HIV-positive and HIV-negative women and their partners are discussed separately.

4.1 Pre-test information and counselling

There is a great deal that women (and their partners) need to know before making a decision to be tested for HIV. Much of it is straightforward information that can be imparted in groups. Reaching a decision is, however, not easy. After basic information has been given, people will need counselling at an individual level to help them assess their level of risk and consider the implications of a positive or negative result in their own situation, before deciding whether or not to be tested.

Pre-test counselling has sometimes been dismissed as relatively unimportant - it is sometimes skipped entirely or performed by rote in a way that leaves no room for interaction or discussion of the implications of testing in relation to an individual’s own health, reproductive, marital or social situation. This is partly because the bulk of experience comes from dedicated counselling and testing centres, to which most clients come only after they have already made the decision to be tested. At reproductive health facilities, the situation is very different. Many women and their partners will never have considered being tested - indeed some will have only very limited knowledge about HIV and AIDS. In these situations, it is likely that the quality of pre-test information and counselling will be a determining factor in whether or not people choose to take an HIV test. For pregnant women, this decision is likely to affect the interventions available to them and therefore their chances of bearing and raising a healthy child.

Men attending reproductive health services including STD services should receive counselling about HIV transmission and prevention. This information should include a discussion about transmission from mother to child. Counselling about fertility decisions and contraceptive services should be given. Pre-test counselling should stress the benefits of couple counselling. Since the vast majority of clients for reproductive health services continue to be women, however, this paper will focus on the counselling and information needs of women attending reproductive health services.

Information about HIV transmission and prevention

Since a child cannot be infected by an HIV-negative mother, the most effective way of avoiding HIV transmission from mother to child is to prevent new HIV infections among potential mothers. The starting point for all pre-test information and counselling should therefore be basic information about HIV transmission and prevention. Young women and men presenting at reproductive health services should all receive information about the sexual transmission of HIV and how to prevent it as well as information about the transmission of the virus from mother to child. Helping HIV-positive couples to avoid an unwanted pregnancy will also cut the likely number of new infections.

Information about the HIV test and about confidentiality

Clients at reproductive health services should be given information about the HIV testing procedure itself, including the accuracy of the tests, confirmatory procedures, and the window period for antibody development. Practical details about blood sampling, the cost of a test and the length of time until results are available should be discussed.

Clients must be told clearly that an HIV test is entirely voluntary. While interventions such as the provision of ZDV or breast-milk substitutes cannot be provided to women whose HIV status is not known, refusing a test should not affect access to other standard antenatal care or reproductive health services.

It is vital that clients understand that HIV test results will be entirely confidential. Women must know and believe that they alone control disclosure of their test results to themselves, to other health staff, or to their partners, families or friends. Results will not be revealed to anyone else (including other health care providers) without the client’s permission.

Counsellors should also discuss shared confidentiality and the benefits of couple counselling. Access to some effective interventions to reduce HIV transmission may depend upon the support of a partner. Counsellors should offer to refer women and their partners to other counselling and testing services in cases where a man, for cultural or other reasons, is unlikely to attend the health facility providing services to his wife or partner.

Counselling to assess the risk of infection

In pre-test counselling, individuals should be given an opportunity to assess their own risk of infection together with a counsellor.

There is currently some evidence that, in highly stigmatized societies, women who believe themselves to be at high risk of infection are less likely than low-risk women to choose to be tested for HIV infection or to come back for their test results. Since the potential benefits of knowing one’s HIV status in the context of childbearing are greater for HIV-infected women, counsellors should take particular care to explain the benefits to women whose self-assessment suggests that they are at elevated risk of being HIV-infected.

The benefits of an HIV test and the implications of the results

Unless women and their partners fully understand the benefits of an HIV test, they are unlikely to choose to have one. A discussion of the benefits of testing is necessarily linked to a discussion about the implications of a positive or negative result.

A negative result allows an individual to act to avoid infection in the future. It will also allow a woman to breastfeed, confident in the knowledge that it is best for her child.

The implications of a positive result will depend upon the interventions available. Information about existing interventions to reduce transmission of HIV from an HIV-positive mother to her children should be given during pre-test counselling to help women weigh up the potential costs and benefits of having a test. Women should be told that, in the absence of any intervention, less than half the babies born to HIV-positive women will contract the virus from their mother. Intervention can reduce that fraction to below 10%. However, it should be clear to a woman that the most effective interventions cannot be made available to women whose HIV status is not known.

Clients should also be told that a positive result will allow them to make important decisions about their own lifestyle, nutrition and health care, decisions which may have a major impact on their survival, even in places where antiretroviral combination treatments are not available.

The potential downside of HIV testing

Clients must be given clear information about the potential downside of HIV testing. Where interventions are unavailable or where a woman or a couple judges them to be unaffordable, clients may decide that the benefits to testing are limited. Where breastfeeding is universal, privacy is limited and breast-milk substitutes are expensive, it may be impossible for an HIV-positive woman to choose alternatives to breastfeeding without advertising her HIV status to her family or community. Counsellors should discuss with a woman the likelihood that she will be ostracized, divorced or otherwise discriminated against if her HIV status is revealed. It may be that the risks of disclosure of HIV status to the broader welfare of both mother and infant far outweigh the likely benefits of HIV testing. Counsellors should discuss these issues with clients individually. Whatever the counsellor’s own assessment, however, they should always offer testing, and always support a woman in her decision to be tested or not.

The decision to be tested for HIV will never be easy. But because there are now clear benefits to knowing one’s HIV status during pregnancy, counselling and HIV testing in reproductive health settings provide perhaps the greatest incentive for women and their partners to take the difficult decision to find out their HIV status.

4.2 Post-test information and counselling for HIV-negative women

In even the highest HIV prevalence countries, most pregnant women are not HIV-infected. For some, the process of testing will raise important and personal issues about sexual and domestic relationships that may need to be resolved through further discussion (perhaps with the partner). A negative result should never be presumed to identify a lack of anxiety or of a need for further counselling. Information and counselling for HIV-negative women should concentrate on preventing future infection.

Preventing future infections

Where couples have been tested together and both are negative, information given in pre-test counselling about prevention of sexual transmission of HIV should be reinforced and the particular importance of avoiding infection during pregnancy and breastfeeding should be stressed.

Research in Malawi suggests that women may be at high risk of HIV infection soon after childbirth. This may be because their husbands or partners have sex with other partners during a woman’s pregnancy or the abstinence that often follows it, becoming infected at that time and passing on the new infection as soon as sexual relations with the new mother resume. This represents a double danger if the mother is still breastfeeding, since there is a very high likelihood of transmitting infection to the infant when the mother carries the high viral load associated with new HIV infections.

Where a partner is infected, or where his serological status is not known, the importance of prevention information and counselling is greater still. Information on where to get condoms and other contraceptive means should be given.

Ensuring healthy feeding practices

A negative test result also creates an opportunity for the active promotion of exclusive and sustained breastfeeding among HIV-negative mothers.

4.3 Post-test information and counselling for HIV-positive women