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5

HIV and counselling

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Contents

Objectives

When you have completed this unit you should be able to:

Introduction to counselling

5-1 What is counselling?

Counselling is a process by which a counsellor helps other people manage difficult situations in their lives so that they are able to find realistic ways to solve their problems. Counselling helps people to make their own choices rather than simply giving them advice or telling them what to do. Counselling empowers people to act on their choices and decisions, and provides them with an opportunity for personal growth and self-discovery.

Counselling is not simply about giving advice and instructions but rather about empowering people to solve their own problems.

5-2 What is a counsellor?

A counsellor is a person who helps people manage their own lives as effectively as possible. A counsellor is not someone who has all the answers and can solve other people’s problems for them. Rather, a counsellor helps people make their own decisions in order to take the best course of action in solving their problems. It is important that the counsellor explains his/her role when a person is first given counselling.

5-3 What is the role of a counsellor?

The role of a counsellor is to:

5-4 What is the difference between counselling and education?

Although counselling includes the provision of information, it is much more than education alone. Counselling also provides emotional support and helps people to understand themselves and their problems. It also helps people to make their own decisions and to plan their future actions. Counselling always respects and maintains a person’s confidentiality. Counselling requires active listening.

5-5 What is active listening?

Active listening includes hearing not only the words people say but also noting their body language and listening for the meaning behind their words. In order to understand what a person is saying and to respond appropriately the counsellor must become skilled in listening to people.

A good listener should:

Active listening is the key to effective counselling.

5-6 Who are counsellors?

A nurse, social worker, doctor or lay person can be a counsellor. A counsellor should have received training in counselling and be able to keep personal information confidential. The training of enough lay counsellors is one of the major challenges facing countries with high HIV rates.

5-7 What are the characteristics of a good counsellor?

A good counsellor should:

A counsellor should communicate confidence in a person’s ability to make a good decision and to be able to cope.

5-8 What are the requirements of counselling?

5-9 What are some common errors in counselling?

Common errors counsellors make include:

A counsellor should do more listening than talking.

5-10 What are the key principles in counselling?

  1. Allowing people to make their own decisions

    People must make decisions for themselves. The counsellor’s role is to facilitate this and not to make decisions for them. This is called client-centred decision making.

  2. Empowering people

    People should be encouraged to believe in themselves and their abilities. Counselling should help people to take control over their lives and set goals for the future.

5-11 What steps does a counsellor follow in providing counselling?

1. Exploring the problem

The counsellor should help people to:

The counsellor can do this by listening actively, by asking appropriate open-ended questions (i.e. any answer is acceptable) and by allowing people to share their feelings.

2. Understanding the problem

The counsellor should help people to:

The counsellor can do this by explaining appropriate options and by encouraging people to look at the consequences of each option.

3. Taking action

The counsellor should help people to:

Counselling should encourage people to believe in themselves and their abilities to make good decisions for themselves.

HIV counselling

###5-12 What is HIV counselling?

HIV or AIDS counselling provides information and support to people with HIV infection to enable them to cope with their diagnosis and illness. It also helps them make the appropriate behaviour changes. Counselling helps people live positively and productively.

5-13 What are the goals of HIV counselling?

The main goals of HIV counselling are to:

  1. Provide information
  2. Provide emotional and psychosocial support
  3. Give hope
  4. Help people to improve the quality of their lives

5-14 What kind of information should be provided in HIV counselling?

The following should be discussed:

It is very helpful to give the person a pamphlet which explains these important points so that they can be read about at home.

5-15 How can HIV counselling help a pregnant woman?

HIV counselling helps a pregnant woman by providing emotional support as well as appropriate information so that she can make decisions and then act on these. Women may need help with the following issues:

5-16 Which pregnant women need HIV counselling?

All pregnant women in South Africa should be given HIV counselling when they first book for antenatal care.

5-17 Do women have a choice as to whether or not they are tested for HIV?

Yes. HIV testing (screening) may be offered to a woman but it is her choice as to whether she is tested or not. Women must never be forced to be tested. A decision to be tested should be an informed one which means that a woman should get counselling before the test is done. Verbal consent must be obtained before the HIV test is done.

Notes need be made in the maternity case records if women declined testing. Additional counselling sessions should be arranged for these women. Women often change their minds once more time is allowed and with additional counseling.

The decision to take an HIV test should always be the woman’s own choice.

All pregnant women should be given provider-initiated HIV testing and counselling. HIV testing is done routinely unless the woman asks not to be tested. This practice of ‘opt out’ testing increases the number of women who agree to be screened for HIV. This makes HIV screening similar to that for other infections such as syphilis.

5-18 What counselling is needed when a pregnant woman is tested for HIV?

The implications of having an HIV test are potentially devastating. Women should be counselled before testing is done. This usually is provided in a group. Individual counselling is done following testing when results are given. Women who are HIV positive usually need further counselling as they face the life-changing implications of a positive test. Knowing that she is HIV positive may change her relationship with her present partner, and with any future partners. Good counselling is essential if an HIV screening programme is to be successful and accepted by the public.

Counselling for antenatal HIV screening

5-19 What counselling is needed before HIV screening?

The importance of pre-test counselling cannot be underestimated. This is where women are most likely to absorb information and identify people who will help them cope with their test results. The following topics should be discussed:

The counsellor should provide an opportunity for women to ask questions. Ideally pre-test counselling should be provided on an individual basis. However, due to staff shortages, a pre-test information session, rather than individual counselling is usually given to groups of women.

An information session should always be provided before a person takes the HIV test.

5-20 What are the advantages of taking an HIV test?

5-21 What are the disadvantages of taking an HIV test?

If the test is positive:

All pregnant women should be offered routine HIV testing.

5-22 How should the HIV test result be given?

The result should always be given in person, privately, gently and sensitively. The registered nurse or counsellor should give the result immediately as social chit-chat only heightens a woman’s anxiety. With the rapid test, results should be available within 20 minutes.

5-23 What counselling is needed after a negative HIV result?

Usually the woman is relieved and pleased to hear the result. It is necessary to allow her time to express her feelings. The following topics should be discussed during the counselling session:

During the window period, which lasts 2 to 8 weeks after the time of infection, the rapid screening test for HIV testing for antibodies may still be negative in spite of the fact that the person is infected with HIV.

5-24 What counselling is needed after a positive HIV result?

Counselling should always be offered at the time that the positive HIV test result is given. The discussion should be private and confidential. The counsellor needs to provide emotional support as well as explain the meaning of a positive test. Often the woman is too shocked and upset to absorb much information. It is vitally important that the woman is given an opportunity to deal with her feelings. This is not the time to provide too much information or to discuss her prognosis. One session is not enough and the woman should always be offered at least one follow-up session. The following guidelines should be used in post-test counselling sessions:

Information can only be provided once the counsellor has allowed the person time to express their feelings and concerns.

Often one or more counselling sessions are needed after a woman is told that she has HIV infection.

Receiving bad news

5-25 What are common responses on being told that the HIV test is positive?

People may react differently to news of HIV infection. The person’s personality, spiritual and cultural values often have a major effect on how they responds to bad news. The following are some common responses:

1. Shock

Often people are shocked when told that they are HIV positive. At this stage support is what is needed. They may sweat, feel dizzy and even feel that they are going to faint. Many will cry.

2. Denial

Often people go into a state of denial and believe that ‘there must be some mistake’. This is a common response and results from feelings of anxiety and helplessness. It is not helpful to attempt to convince the woman at this stage that she should face reality. Rather, encourage her to talk about her feelings and anxieties and provide emotional support. This initial response is common and with effective counselling is usually short-lived. A good counsellor can help a woman to accept the result and begin to develop positive ways to manage her infection.

3. Fear

Most people respond to the news with a feeling of fear and panic. Many people with HIV infection fear abandonment and rejection by friends and family. They may fear pain, suffering, discomfort and dying.

4. A sense of loss

People who are HIV positive usually experience a tremendous sense of loss in their lives. The following are examples of these losses:

5. Guilt

People may experience feelings of guilt over the manner in which they became infected with HIV, as well as guilt over other people they may have infected. This is particularly common for a woman who has infected her infant.

6. Anger

Some people with HIV infection experience episodes of anger for a variety of reasons:

7. Depression

The feeling of helplessness and lack of control associated with the many losses experienced may lead to depression and even suicidal thoughts.

8. Anxiety

People with HIV infection have many anxieties:

These emotional responses are similar to those experienced when hearing about the death of a close friend or family member or being diagnosed with cancer.

Counselling women with HIV infection

5-26 How can a counsellor help a woman who is HIV positive tell her husband or partner about her infection?

Deciding to tell a partner is very difficult. Many HIV-positive women fear being rejected or abandoned. They are afraid of being blamed for what has happened and fear that their partner will tell others. Not telling a partner presents problems. The couple may then not be able to discuss whether or not to have children. They will also have trouble coping with illness or death. An unaffected partner may become infected after unprotected intercourse. Some suggestions for the counsellor are:

If the counsellor feels unsure as to how to handle a particular situation she should contact a local resource person, such as a social worker, clinical psychologist or priest, to obtain help.

5-27 Should a woman with a positive HIV test tell other people about her diagnosis?

The counsellor should help the woman to identify at least one person whom she trusts and who she would be able to turn to for support. She should reflect on the following questions:

It is important that a woman does not rush into telling people before she has thought through the implications of doing so, such as losing her job or being rejected by people.

Encourage women to tell at least one person whom she can trust about her diagnosis so that she can get their support.

5-28 What should a counsellor do if a person with HIV infection asks her how long they have to live?

The counsellor should never attempt to make a prognosis of how long the person has to live, even if this question is asked. Rather encourage the woman to consider that she may have many healthy years ahead of her and to take good care of herself. Life expectancy and quality of life can be greatly improved with ARV treatment. Always give people hope.

5-29 Is an HIV-positive woman required by law to tell her employer of her HIV status?

No. There is no law requiring an employee (worker) to tell her employer (boss) what her HIV status is. This is her own choice and she should be encouraged to disclose this personal information only if her employer is likely to be fair and sympathetic.

The law does not require an employee to tell her employer of her HIV status.

5-30 What happens if a woman’s employer finds out that she is HIV positive?

A person cannot be fired from their job simply because they are HIV positive. This is against the law (the constitution) in South Africa, and applies also to domestic and farm workers. The counsellor should encourage the person to contact her labour union for advice on how to manage this situation if the person faces dismissal.

5-31 How should an HIV-positive woman be counselled if she wants to fall pregnant?

Questions about pregnancy and HIV are among the most difficult to answer and should be handled with great sensitivity by the counsellor. Do not try to persuade the woman not to fall pregnant or you will drive her away from the health services. The counsellor should do the following:

The counsellor should be able to help the woman make a wise and informed choice. These issues should be discussed in a kind, supportive and non-judgemental way.

5-32 Why may an HIV-positive woman want to fall pregnant?

5-33 What are the implications if an HIV-positive woman should fall pregnant?

The HIV-positive woman should consider:

With ARV prophylaxis or treatment during pregnancy, labour and breastfeeding the risk of transmitting HIV to the fetus can be greatly reduced. The risk will be less than 5%.

Safer sex counselling

5-34 What is safer sex counselling?

Safer sex counselling is not a series of commands to a woman. It is counselling which helps a woman to consider her risk of becoming infected with HIV or of passing HIV on to her partner. She also needs to make an informed choice as to how she will protect herself and her partner from infection.

Safer sex counselling should provide a woman with information and support to enable her to make choices that will protect her and her partner from becoming infected with HIV.

5-35 What options does a woman have to protect herself and her partner from HIV?

Some sexual practices are safer than others. People are more likely to change their behaviour if they are able to choose which sexual practices they are happy with. Ask the woman to identify the most acceptable option for herself and her partner. Try to promote the idea that safer sex is a sign of caring for each other.

5-36 How does a counsellor promote the use of condoms?

5-37 What are the benefits of joining an HIV support group?

A support group provides a person with HIV infection with the opportunity of meeting other people facing similar problems. They can support each other.

Support for HIV counsellors

5-38 Why may healthcare workers who counsel HIV-positive patients need emotional help themselves?

HIV counselling is extremely stressful work. Therefore, support and mentoring for all counsellors is essential. This helps to prevent burn-out and enables counsellors to continue to be effective. Stress management courses would also be very helpful.

Case study 1

A woman attends an antenatal clinic and is found to HIV positive. She asks the midwife whether she could continue having sex with her boyfriend. The midwife impatiently tells the woman that she deserves to have AIDS as she has had too many boyfriends. The midwife also lectures the woman on the dangers of being infected with HIV. The woman is very upset and refuses to return for further antenatal care.

1. What was the problem with the midwife’s attitude towards the woman?

She was judgemental and impatient, and treated the woman as if she were a child. She also failed to answer the question as to whether the woman should continue to have sexual relations with her boyfriend. The midwife should have listened carefully to her story.

2. Why should a counsellor not lecture a patient?

The goal of counselling is to help people understand their problems in order to decide the best way to resolve them. A counsellor should not tell the person what to do. Counselling is much more than just education.

3. Should the midwife have informed the woman that her infant may become infected with HIV?

The midwife should have provided the woman with the information. However, this should be done with kindness and understanding. The midwife should have allowed the woman to ask questions and given her simple, honest answers. The woman needs to be told about the importance of ARV prophylaxis.

4. How would you have answered the question about further sex with the boyfriend?

The advantages and disadvantages of continuing the sexual relationship, both for the woman and her boyfriend, should have been explored. The woman would then have been able to make the best decision for herself. It would be important for the boyfriend to be screened for HIV.

5. Should a counsellor ever give advice?

Yes. Good advice may be given by a counsellor. However, this should only be given once the counsellor has listened to the person and explored the problem. Remember that the person being counselled need not necessarily take the advice. The counsellor should respect this decision and support the person even if her advice is refused.

6. Are you surprised that the woman refuses further antenatal care?

No. Her trust in the care of the midwife has been broken. She was not given the support that she needed, and she was treated in an unkind way.

7. What can be done to correct the situation?

A staff member with counselling skills needs to make an appointment for the woman to come and see her or visit the woman at her home. She should provide her with the information and support she needs, and gently persuade her to attend the antenatal clinic again.

Case study 2

A group of pregnant women are being counselled by a midwife in the waiting area of an primary care antenatal care clinic before being tested for HIV. They are instructed that all pregnant women must take the test. As the midwife has a busy clinic ahead, she briefly tells the women that infants can become infected through breastfeeding, and that they should, therefore, not breastfeed if they are HIV positive.

1. Is counselling always necessary before an HIV test?

Yes. It is essential that a woman understands the advantages and disadvantages of HIV screening before having an HIV test.

2. Should counselling before HIV testing be given to patients as a group?

Whenever possible counselling should be given on a one-to-one basis. However, due to staff shortages, information most often has to be given to a group of women.

3. Does counselling have to be given by a doctor or midwife?

No, lay people can be trained to become very skilled counsellors. Most of the antenatal counselling in South Africa is given by lay counsellors.

4. Do all pregnant women have to take an HIV test?

No. Women do not have to take an HIV test. HIV screening is voluntary. However, ‘opt out’ routine HIV testing is provided in South Africa. A note needs to be made in the maternity case record that the woman declined HIV screening. In addition further counselling sessions need to be scheduled for the woman.

5. Why was the pre-test counselling inadequate?

The woman should not have been told that they have to take the test. Only the risk to the infant while breastfeeding was mentioned and no explanation was provided. Incorrect information regarding infant feeding was given. There are many other important subjects that must be discussed. The midwife was in a hurry and, therefore, there was no time for the women to ask questions. Information should have been provided so that they could make an informed choice.

Case study 3

A pregnant woman is told that her HIV test is positive. This is her second pregnancy. She insists that the result must be incorrect. When the midwife assures her that her test is indeed positive, she becomes very distressed and cries. Later she threatens the counsellor. Before she leaves the clinic, she asks whether she should tell her boyfriend the news.

1. Is it common for a person to refuse to accept a positive HIV result?

Yes. Shock and denial are often the first responses to bad news. With time and explanation the result is usually accepted.

2. How can a counsellor help a woman who is very upset after receiving bad news?

By being kind, understanding and supportive. Allow the woman to speak about her fears and anxieties.

3. Why was the woman aggressive towards the counsellor?

Some people respond to bad news with anger and aggression. They are angry that they are infected with HIV, and angry with the person who infected them. They may also be angry with the person who gives them the bad news. Anger usually quickly turns to guilt and depression. A counsellor should not react negatively to a person who feels angry, but encourage her to talk about her feelings.

4. Should she tell her boyfriend?

She needs to speak to the counsellor about his possible responses and how these will affect her life and that of her child. Women often do not pass on the news as they are afraid of rejection, anger and possibly violence. Each woman has to make her own decision. She should be encouraged to tell one, trusted friend.

Case study 4

A young woman with a two-year-old child returns to an ARV clinic for a 6 monthly check-up. She was found to be HIV positive when screened during the antenatal period. She told her employer that she was positive, and as a result she lost her job as a waitress. At present she has a new boyfriend and is considering falling pregnant again.

1. Does she need further counselling?

Many HIV-positive women need further counselling as new problems arise. She has lost her job, has a new boyfriend and is planning to fall pregnant again. All of these require further counselling.

No. An employee cannot be fired from her job simply because she is HIV positive. A labour union could be contacted to find out more about what to do regarding this matter.

3. Should she have another child?

Whatever the opinion of the counsellor, the young woman needs to be helped to make the best decision for herself, her child and her boyfriend. She should then be supported in her decision.

4. How can she protect her boyfriend from HIV infection?

Safe sex counselling must be provided as both she and her boyfriend should practice safer sex. Also explore her feelings about telling her boy friend that she is HIV infected. If she decides not to fall pregnant again, she should use a condom every time she has sexual intercourse.