|Counselling and Voluntary HIV Testing for Pregnant Women in High HIV Prevalence Countries - Elements and Issues (UNAIDS, 1999, 24 p.)|
|4. Counselling and voluntary HIV testing: a prerequisite for action|
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 partners exposure to HIV infection, and about avoiding unwanted pregnancies. Health professionals can also ensure services before and during delivery that minimize the childs 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.
Pre-test information and counselling: a summary
· Information about the sexual transmission of HIV and how to prevent it
· Counselling for risk assessment
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 individuals 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 clients 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 ones 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 counsellors 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 ones 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.
Pre-test information and counselling for HIV-negative women: a summary
· Information to prevent future infections
· Importance of sustained and exclusive breastfeeding for infant health
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 womans 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.
Pre-test information and counselling for HIV-positive women: a summary
· Information about therapy options, including costs
· Information and referral for support, services and positive living
Information and counselling about therapy
Obviously, a positive test result is a prerequisite for the two interventions thought to be most effective in reducing transmission of HIV from mother to child: antiretroviral therapy and avoidance or abbreviation of breastfeeding. Where antiretroviral therapy is available, counsellors should explain its benefits and the importance of adherence to the regimen. They should also make clear that, while research continues, it is thought that the benefits of antiretroviral drugs may be diminished if a woman goes on to breastfeed her infant. Unless antiretroviral drugs are provided free, counsellors should discuss the cost of the therapy and help a woman assess her familys ability to bear the cost of a full regimen.
Information and counselling about infant feeding
Full information about infant feeding options is essential for all HIV-positive mothers-to-be, regardless of whether antiretroviral drugs are available. Pregnant women should be reminded that less than half all babies born to HIV-positive mothers and breastfed will be infected with HIV. Of those that do become infected, at least a third are likely to have contracted the infection while being breastfed. Women should also understand that breastfeeding protects against a wide range of other childhood diseases. Women should be given information about the alternatives to breastmilk, and what two years of substitute feeding is likely to cost. The importance of access to clean water, fuel and feeding implements if they choose substitutes to breastmilk should also be discussed.
Counsellors should discuss the possibility that choosing substitute feeding might label a woman as HIV-positive in the eyes of her family or her community. Counsellors should help a woman analyse her social situation and family resources and weigh up the best feeding option for her baby. A mother must decide what the best option is in her own situation; counsellors should provide all possible support for a womans decision.
Information and counselling about fertility regulation
In many high HIV prevalence countries, bearing healthy children provides social status and access to family resources - access denied to women whose HIV-infected children sicken and die. To that extent, interventions to reduce HIV transmission from mother to child can help a woman consolidate her social position, despite her HIV infection.
While women and couples should be free to make their own decisions about child-bearing, counsellors should ensure that women are aware of the risks inherent in any future pregnancies, as well as the risk of passing on the virus during unprotected sex. Counsellors should make it clear that even where interventions are available, all pregnancy carries some risk of HIV transmission from mother to child. And the risk of transmission grows as the mothers infection progresses, so it is likely to grow from one pregnancy to the next. What is more, the effectiveness of anti-retroviral therapy in successive pregnancies is unknown.
Women who choose to avoid pregnancy in the future because of their HIV infection should be referred to family planning services. Women who choose two years of replacement feeding should also receive advice on contraception to replace the birth-spacing effect of breastfeeding. If they choose to bear more children, they should be encouraged to delay the pregnancy for at least two years.
Counselling about shared confidentiality
While health service providers must guarantee confidentiality of test results, they should recognize that the burden of secrecy can be detrimental to peoples ability to live positively with their infection. Counsellors should help HIV-positive clients decide who, if anyone, to share information about their status with. Counsellors should never themselves disclose test results to anyone else except at the express request of the client.
Counsellors should discuss the potential pluses and minuses of sharing test results with other people. Sharing a positive test result with a partner may expose a woman to ostracism. It may, on the other hand, allow her to make otherwise impossible choices about childbearing and care. Sharing results with other family members can provide psychological support as well as necessary care and help in planning for the future. Sharing results with other health care workers can ensure that a woman receives the best information and care possible for herself and her child over the course of her pregnancy and eventually her illness. Sharing results with other HIV-positive people in support groups can contribute to knowledge and coping skills.
Information to prevent the further spread of HIV
Information on preventing the sexual transmission of HIV is every bit as important for HIV-positive as for HIV-negative clients. Staff counselling HIV-infected women should reinforce information provided in pre-test counselling, stressing the risk of passing infection on to present and future sexual partners, discussing negotiation of safer sex with those partners and providing information about sources of free or affordable condoms.
Information about the natural history of HIV infection, well-being and care
In many countries, a positive HIV test result is equated in peoples minds with near-immediate sickness and death. Correcting this misconception is an important aspect of counselling. Counsellors should discuss the natural history of HIV infection including the long latency period and common opportunistic infections.
Counselling and voluntary testing services attached to reproductive health services are an important entry point to the continuum of care. But it must be recognized that HIV-related counselling is not the primary objective of these services. They are unlikely to be able to provide as much follow-up counselling or support as clients need. Counsellors at reproductive health facilities should therefore provide referrals to support groups or other sources of information about care and about living positively with HIV.
Potential mothers and fathers
Counselling and voluntary HIV testing can help women and men who may be considering forming or expanding their families to:
· weigh up the risks and advantages of a pregnancy
Pregnant women who test HIV-negative
Counselling a woman following a negative test can help a woman
· understand and maintain safe behaviour to avoid future infection
Pregnant women who test HIV-positive
Counselling a women following a positive test can help a woman
· decide whether to share her HIV status with anyone, and if so with whom
Partners of pregnant women
Counselling and voluntary testing of partners of pregnant women helps couples
· support one another in decisions about care and infant feeding
The wider community
Widespread availability and use of counselling and voluntary testing for HIV in a community can
· reduce fear, ignorance and stigma surrounding HIV
· reduce spillover of artificial feeding to HIV-negative mothers