Guidelines for Counselling around HIV and Pregnancy - Southern ...

SATSouthern AfricanAIDS TrustSupporting community responses toHIV and AIDS in southern AfricaHIV Counselling Series No. 13Guidelines for Counsellingaround HIV andPregnancyEnglish

Guidelines for Counsellingaround HIV and Pregnancy

ForewordTh. is.is.the.thirteenth.publication.in.a.series.of.guidelines.for.counselling.people.who.are.infected.with.HIV,.concerned.about.being.infected.with.HIV,.or.are.living.with.or.caring.for.people.with.AIDS..Th. is.book.looks.at.specifi.c.issues.and.provides.practical.guidance.on.counselling.couples.who.are.infected.with.HIV.and.who.wish.to.become.(or.who.are).pregnant..Produced.by.SAT.(Southern.African.AIDS.Trust).with.the.fi.nancial.support.of.the.government.of.Canada.provided.through.the.Canadian.International.Development.Agency.(CIDA),.the.Swedish.International.Development.Agency.(Sida),.and.the.Royal.Netherlands.Embassy.(RNE),.who.do.not.necessarily.share.the.views.expressed.here..First.Edition.May.2007Reprinted.2008Southern AfricanSAT AIDS TrustSupporting community responses toHIV and AIDS in southern Africa©.Southern.African.AIDS.TrustExtracts.from.this.publication.may.be.freely.reproduced.with.acknowledgement.of.the.source,.provided.the.parts.reproduced.are.not.distributed.for.profi.t.Hard.copies.of.this.publication.may.be.obtained.from:SAT.Regional.Offi..ce.Suite.293,.Dunkeld.West.Centre.281.Jan.Smuts.Ave,.Dunkeld.WestJohannesburg,.South.AfricaTel:.(+27.11).341.0610.Fax:.(+27.11).341.0661Email:.info@satregional.orgYou.can.also.download.the.document.in.PDF.format.from:.www.satregional.orgDesigned.and.published.by.Jacana.MediaTh. e.Southern.African.AIDS.Trust.(SAT)*.is.an.independent.regional.organisation..It.has.supported.community.responses.to.HIV.and.AIDS.in.southern.Africa.since.1991..SAT.is.profoundly.grateful.to.the.volunteers.and.professionals.who.have.made.this.and.other.publications.possible.Most.of.the.HIV.Counselling.Series.guidelines.are.the.result.of.workshops.organised.under.SAT’s.School.Without.Walls.(SWW)..Th. is.is.SAT’s.skills-.and.lesson-sharing.initiative.that.validates.and.promotes.southern.African.experience.and.expertise.in.responding.to.HIV.and.AIDS..SWW.brings.together.professional.counsellors,.people.living.with.HIV.and.AIDS,.staff..of.AIDS.service.organisations,.and.people.working.in.the.fi.eld.addressed.by.the.publications..Counsellors,.practitioners.and.people.living.with.HIV.from.across.the.region.reviewed.the.book..SAT.would.like.to.acknowledge.the.contribution.of.Gail.Jennings.who.produced.the.fi.nal.draft..SAT.would.also.like.to.thank.Dr.Ishania.Mahabeer,.of.the.Reproductive.Health.and.HIV.Research.Unit.(RHRU).at.Johannesburg.General.Hospital,.South.Africa,.who.reviewed.the.book;.and.Jacana.Media.* SAT was formerly known as the Southern African AIDS Training Programme.Printed.by.Fishwicks,.Durban.Job.No..000824ISBN:.978-1-920152-06-2

ContentsIntroduction............................................................................................................................................... 2Important Terms.................................................................................................................................. 3Basic Counselling Skills and Techniques.......................................................... 5Counsellor preparation........................................................................................................... 5What is counselling?.................................................................................................................. 6Skills and attitudes needed to be a treatment counsellor............... 7Counselling techniques.......................................................................................................... 8Conducting a counselling session............................................................................... 14Information about HIV and AIDS and PTCT Counselling...... 16Pregnancy, HIV and the mother’s health........................................................... 16Why counsel around HIV and pregnancy?..................................................... 17Testing for HIV................................................................................................................................. 19Why test for HIV during pregnancy?..................................................................... 19Why test for HIV before conception?..................................................................... 22ART and conception................................................................................................................... 22Discordant couples....................................................................................................................... 24Termination of pregnancy................................................................................................... 25Prevention of MTCT.................................................................................................................. 26PMTCT during infant feeding........................................................................................ 27Testing a baby for HIV............................................................................................................. 31Disclosure................................................................................................................................................ 33Where To Go for More Information.......................................................................... 35Notes..................................................................................................................................................................... 36

IntroductionThis book has been written for counsellors who are helping women andcouples who are:thinking about becoming pregnant;thinking about the options of having a baby;already expecting a baby.It is possible that one or both people are HIV positive. An HIV-positivemother can pass on the virus to her baby even before it is born, throughblood or body fluids. This can happen:before childbirth;during childbirth;after childbirth;during breastfeeding.This is known as mother-to-child-transmission (MTCT) or parentto-childtransmission (PTCT). It is possible to help prevent MTCT ofHIV after becoming pregnant, but it is even better to start taking stepsto prevent transmission before the baby is conceived. This is why it isimportant for counsellors to encourage couples who are thinking abouthaving a baby to test for HIV.If a client is already pregnant, it is also important to encourage her to testfor HIV. There are many programmes that help to prevent a baby frombeing infected with HIV during birth and during infant feeding.This book has two sections. The first section reminds counsellorsabout basic counselling skills and techniques. The second section givescounsellors basic information about HIV and AIDS, PTCT, and testing ababy for HIV.The book does not give the names and details of PMTCT programmes.Different countries use different drugs for their programmes and mighthave different ways of dealing with issues. As a counsellor, it is importantfor you to find out about the PMTCT programmes in your area, thetypes of infant HIV testing done, and the laws about termination ofpregnancy. In this way, you can help your clients make informeddecisions.Important TermsThis is a list of words and ideas that could be difficult to understand. .It might help to read the list before beginning the book, and think aboutsome of the ideas. The words that are here are bold in the book, so you cancome back to this page if there is something you don’t understand.Adherence counselling: This is helping .clients to take their ARV treatment correctlyevery day.Adopted/Adoption: This means when a childlegally becomes part of a family, with parentswho are not the child’s birth parents.Antenatal clinic: A clinic that looks afterwomen who are pregnant.Antibodies: Part of the blood that fightsillness and infection, such as HIV. Anantibody test is a blood test that looks for .the presence of a particular antibody.ART: ART stands for Anti-RetroviralTreatment.ARV drugs: The drugs used in ART are calledAnti-retroviral drugs (ARVs).Artificial insemination: A procedure doneby a health worker or doctor, where a man’ssperm is put inside a woman, without thecouple having unprotected sex.Birth defects: Physical health problems that .a baby is born with.Body fluids: These are liquids made by yourbody, such as blood, semen and amniotic fluid.Amniotic fluid is the liquid around a baby inthe womb (uterus).Caesarean section: This means giving birthby an operation in a hospital. This is alsocalled a C-section or Caesarean).CD4 count: Is a blood test that shows .how many CD4 cells you have and thestrength of the immune system. A healthyperson can have a CD4 cell count of between500 to 1 500 (the number of CD4 cells in amillilitre of blood). When someone has .AIDS, he or she has a CD4 cell count of .200 or less. .Compassionate: This means caring forother people.Conceive: To become pregnant. This isalso known as conception.Confidentiality: Information given to acounsellor by a client is not shared withanyone else, unless the client has given hisor her consent. It is confidential.Disclosure: This is telling people (ordisclosing) your HIV status.Discordant couple: A couple .where one partner is HIV positive and theother partner is HIV negative.Discrimination: This is when peopleor groups of people are treated unfairlybecause they are different.Empathy: This is when you canunderstand how someone feels,because you can imagine what it islike to be in his or her position.Empowered: When people feelthey are being listened to, andthey have the strength to dothings for themselves.Exclusive breastfeeding:Feeding an infant onlybreastmilk, (no water or otherfoods, only breastmilk andmedicines prescribed by adoctor).Exclusive formula feeding:Feeding an infant only milkformula.Expressed breastmilk: This meansto squeeze breastmilk out of thebreast by hand or with a special typeof pump.

Formula: A dry powder that, when added towater, makes milk used to feed a baby.HAART: This stands for Highly ActiveAnti-Retroviral Treatment. This meansthat at least three ARVs are being usedfor treatment.Immune system: Part of the body thatfights infections, diseases and viruses.HIV and AIDS destroy the immunesystem.Infected with HIV: This meansthat a person is carrying the HumanImmunodeficiency Virus (HIV) inhis or her blood. This person willtest positive for HIV.Informed consent: This means thatthe person who gives permissionunderstands exactly what they areconsenting to.Informed decision: Making adecision based on facts and correctinformation.Legal guardian: A person who looksafter a child, in the eyes of the law. Thisperson is not always the child’s parent.Mastitis: An infection of the breast ornipple.MTCT: This stands for Mother-to-ChildTransmission of the HIV virus. This meansthat during birth and breastfeeding, amother can sometimes pass HIV to her baby.There are ways to stop this transmission,called PMTCT. This stands for Prevention ofMother-to-Child Transmission.Natural birth: Giving birth through thevagina.PCR test: PCR stands for Polymerase ChainReaction. It is a test used to check for HIV inblood.Preventive counselling: Giving your .client information on how to prevent himor herself from being infected with HIV,and to practise safe sex.PTCT: This stands for Parentto-ChildTransmission of the HIVvirus. PPTCT stands for Preventionof Parent-to-Child Transmission.This means that mothers, fathers andcaregivers can transmit HIV, and need totry to prevent transmission.Re-infection: This can happen when aperson living with HIV has unsafe sex .(sex without a condom) with another .person living with HIV. This means that theperson is infected with HIV again. The newinfection could be a resistant strain of HIV.Resistant HIV is a type of HIV that can fightanti-retroviral drugs, stopping these drugsfrom working properly.Safe sex: Intercourse that prevents infectionwith HIV and other sexually transmittedinfections. One way people can have safe sexis by using a new condom every time theyhave sex.Sperm washing: This is when semen thathas HIV in it is washed away from sperm tomake the sperm safe for use in artificialinsemination.Stigma: This is judging people negativelybecause you think they are different.Termination of pregnancy: This is anoperation to end a pregnancy. This isalso known as a TOP or an abortion.Ultrasound scan: Using a specialmachine to look at an unborn baby inthe mother’s body.VCT: This stands for VoluntaryCounselling and Testing for HIV.Viral load: This is the number ofcopies of HIV in a millilitre of anHIV-positive person’s blood. A highviral load means that there is a lot ofHIV in the blood, destroying the .CD4 cells very quickly.Vulnerable: This is when someone iseasy to hurt or attack, because they arefeeling emotionally weak.Basic Counselling Skillsand TechniquesCounsellor preparationCounselling is a structured conversation between two or more people. Theseare a client (or clients) and a counsellor. The aim of this conversation is to helpthe client work through a particular problem or situation that he or she faces.This book has been written to help you counsel couples and individuals who areplanning to become pregnant, or who have recently discovered that they arepregnant. The couple or individual may or may not yet know their HIV status.As a counsellor, you could find yourself in a number of different counsellingsituations, with a number of different counselling goals.Some clients will visit a counsellor for preventive counselling. Preventivecounselling means giving your client information on how to prevent him .or herself from being infected with HIV, and to practise safe sex.Other clients might come to you for pre-test or post-test counselling. .Pre-test counselling takes place before your client has an HIV test, andpost-test counselling takes place when you give your client the HIV testresult.Supportive counselling means helping your client deal with the manyworries, anxieties and challenges he or she may have as a result of livingwith HIV.If your client is pregnant and taking treatment for HIV and AIDS,she might visit you for adherence counselling. Adherence counsellingmeans helping clients to take their treatment correctly every day.For more information about different kinds of HIV counselling, youcan read SAT’s HIV Counselling Series 6: Basic AIDS CounsellingGuidelines.The aim of counselling is to help someone work through a problem on hisor her own.

What is counselling?Counselling IS:listening actively to a client;giving a client space to talk about his or her problem;helping a client understand his or her problem;giving a client correct and appropriate information;helping a client make an informed decision;helping a client to understand the results of that decision;helping a client recognise and build on his or her own strengths.Counselling IS NOT:telling a client what to do;making decisions for a client;judging a client for his or her behaviour or cultural and .religious beliefs;blaming a client;arguing with a client;telling a client what you would do if you were him or her;making a client depend on you for advice and solutions.Counselling is helping a person find the solution to his or her ownproblem. It is not telling someone what you would do in his or hersituation.Skills and attitudes needed to be a treatmentcounsellorTo be an effective counsellor you need to:show respect for your client and other people;take responsibility for what you do or say to your client;listen actively;know your limits as a counsellor;be honest and trustworthy;not judge anyone;be patient and compassionate;be able to leave your own worries behind, and focus on your client;be empathetic.You also need to know your own cultural, personal or religious beliefs aroundHIV and pregnancy. You need to think about how these beliefs might affectyour opinion. Some people might believe that it is a woman’s duty to havechildren; others might believe it is a woman’s choice to have children. Somepeople might believe that termination of pregnancy is wrong, and otherpeople might think that giving birth by Caesarean section is wrong.To be an effective counsellor you also need to be knowledgeable about HIVand AIDS, and pregnancy. You also need to know when to refer your clientto someone else. Referring a client means giving him or her the contactdetails of another counsellor, health worker or helper. This person maybe able to help more effectively than you can.The second part of this book will give you some important informationabout pregnancy and the prevention of parent-to-child transmission(PPTCT). You need to have the correct information to be able to guideyour clients to make a decision.RememberMedical science is always making new discoveries and inventing newtests, producing new drugs and finding out more about PPTCT. As acounsellor you must read and research as much as you can, to find outthe latest information. This will mean you are always up to date, andcan give your clients accurate information. You also need to look afteryour own health and emotions, so that you have enough strength andenergy to care about your clients.

Counselling techniquesYou will find more details about counselling techniques in SAT’sHIV Counselling Series 6: Basic AIDS Counselling Guidelines.Here is a summary of the most important techniques.ConfidentialityEverything that your client tells you is confidential, unless you have hisor her informed consent to tell someone else. You should not even tellanyone else that someone is your client.Why confidentiality is importantThe aim of counselling is to help your client think carefully about his orher problems. This can only happen if they are honest with themselvesand with you. Your client is more likely to be honest with you if he orshe knows you will keep everything confidential.There is a lot of stigma and discrimination around HIV and AIDS. .You need to help protect your client from this.Active listeningActive listening means that you listen very carefully to what your clientis telling you. You do not listen with one ear while your mind is thinkingabout what to say next (or about what to prepare for dinner after thesession!).Active listening also means showing your client that you are listening.Look at your client while he or she is talking. Remember that in somecultures it is rude to look at another person in the eye.Put away any distractions. This could be a cell phone, a radio, a sandwichand so on.Use your body language properly. You can do this by sitting in a relaxedway, not playing with your hair or clothes, and by nodding your head orsaying ‘mmm’ or ‘aha’ to show you are listening.Keep your posture open – do not fold your arms over your body.Ask questions.Repeat what your client has said to you in a different way. This shows thatyou have understood his or her feelings.Practise active listening with your friends and family.

Asking questionsWhen you ask questions, you and your client can explore the problem.Try to ask simple questions.Ask one question at a time and wait for the answer.Try to ask open-ended questions. These are questions that do nothave a quick answer like ‘yes’ or ‘no’.Open-ended questions often start with words like ‘tell’, ‘how’ or ‘what’.‘Tell me more about…?’‘How do you feel about…?’‘What would happen if…?’The client will then think about their answer and apply it to their problem.Closed questions often start with words like ‘who’, ‘when’ or ‘do’.7Are you going totry to becomepregnant?Yes!Showing empathyShowing empathy means understanding the feelings your client has about hisor her problem. You do not have to feel the same feelings.You do not have to have children of your own to show empathy for someonewho is thinking about becoming pregnant, or is pregnant.When you show empathy, try to give your client’s feelings a name. Saysomething like ‘You sound as if you are feeling sad’, or ‘It sounds like youare feeling guilty’. Don’t worry if you say the wrong thing – your clientwill correct you, and this will help him or her to think deeply about thosefeelings.How do you feelabout trying tobecome pregnant?Well, I have manyworries about it,but I have alwayswanted to have atleast one baby…Think about all the different feelings people can have. Sometimeswe can get stuck talking only about feeling sick or well, happy orunhappy.Empathy is not the same as sympathy, pity or feeling sorry forsomeone. When you feel sorry for someone, you can make him or herfeel weak or helpless. A counsellor’s aim is to help a client feel strong4and empowered.10 11

Building your client’s strengthsYour role as a counsellor is to help a client find his or her own solutionsto a problem. The client probably already has ways of finding a solution,but might not realise this.You also have another role: to help a client find his or her innerstrengths. Your client might have forgotten his or her own strengths.Identify what he or she has already done to overcome a problem ordifficulty.Find out what solutions worked and what solutions did not.Help the client understand why the problem solving did or did notwork.Identify a personal goal with your client and work out a plan toachieve it.SummarisingSometimes it is useful to briefly repeat or summarise what your clienthas said. You can do this:to make sure you have understood what he or she is saying;to remind each other what you talked about in the last session;to move on to a new subject;to end a counselling session.Role-playing or actingYour client may find it helpful to practise how to deal with a situation, such asdisclosing his or her HIV status. Acting out a conversation or situation withyour client is called role-playing.Have you sharedthe problemwith anyone?I have talked to my sister,and she reminded me thatI have made many gooddecisions in my life.I must believe in myself.Some useful questions to find out a client’s inner strength.What have you done about this problem?Have you shared the problem with anyone else? Who was this .person?Are there things you could have done differently?12 13

Conducting a counselling sessionBefore a sessionTry to put your own worries and problems behind you.Know how much time you can spend with your client.Tell people they must not interrupt you.Have some paper and a pen ready to take notes. Check any previousnotes you might have.Have support materials ready. These could be leaflets on pregnancyand labour.Beginning a sessionAlways smile and welcome your client.Tell him or her how long you can spend together.If this is the first time your client has visited you, tell him or her whatyou do as a counsellor. Remind the client that your role is not to solveproblems, but to help him or her to find their own solutions.Remind the client that everything in the session is confidential.Do not sit too close to your client – or too far away.Listen actively and use all your counselling skills and techniques.Ending a sessionSummarise what has been discussed. Talk about what they havedecided to do, and agree on what to do next.Ask your client if he or she has any questions. These could be aboutdifferent types of drugs or ways to eat properly.Set a time for another meeting, if you think it is needed.Smile and be friendly as you walk with your client to the door.RememberDo not see another client immediately afterwards. Give yourself time tothink about the session you just had. Is there anything you wish you hadsaid? Is there anything you wish you had not said? Try to learn from eachsession, so you can get better at helping clients. Then give yourself sometime to prepare for the next client.Can we make anappointment forthis afternoon?I am busy preparingfor my next client.During a sessionDiscuss the reasons for the visit.Help your client identify a problem or difficulty. If he or she has .more than one problem, decide together which is the most importantfor that day.Always have correct information to give your client. This will helpyour client to make an informed decision.Help him or her explore options and solutions.Support him or her in making choices and taking decisions. Discusswhat things could happen with each choice.Help your client find a way to cope with the problem or difficulty.14 15

Information about HIV andAIDS and PTCT CounsellingThis section will give you more information on HIV and AIDS, and howparent-to-child transmission (PTCT) happens. It will also help you withspecific problems that clients wanting to fall pregnant might have, andhow to counsel around these issues.MTCT stands for Mother-to-Child Transmission. When an HIV-positivewoman is pregnant, there are things that can be done to help reduce therisk of giving HIV to the unborn child. Not all women who are infectedwith HIV give birth to babies with HIV. PMTCT stands for Prevention .of Mother-to-Child Transmission.PTCT stands for Parent-to-Child Transmission. This is different fromMTCT because it is not only mothers who can transmit HIV to children,but also fathers and other caregivers. PPTCT stands for Prevention ofParent-to-Child Transmission.Pregnancy, HIV and the mother’s healthHealth workers used to tell HIV-positive women that pregnancy wouldmake them weak and vulnerable. They also said that their pregnancycould cause their infection to progress to AIDS more quickly.Today, researchers and doctors have found that there is no proof for thisbelief. However, it is still important for a woman who is pregnant:to try to live as healthily as possible;to visit her antenatal clinic regularly;to try to eat healthy foods;to exercise lightly;to practise safe sex, in order to avoid re-infection;to stop smoking;to avoid alcohol.This will give both the mother and the baby the best chance of being healthy.As a counsellor, help your client find ways of living a healthy lifestyle,to give her and her baby the best chance of good health.Why counsel around HIV and pregnancy?A counsellor can help clients cope with the emotions and challenges they .face when they want to become pregnant. This could be:concern about what pregnancy will do to their health;worrying what people will say about an HIV-positive person having .a baby;fear of infecting their HIV-negative partner;fear of not living long enough to see their baby become an adult;concern about infecting the unborn baby;confusion about anti-retroviral treatment, and how it can help PPTCT;worry about not being able to care for a baby born with HIV.Many people will also be fearful that choices around PPTCT will force themto disclose their own HIV status. This could happen if a couple choosesto formula-feed their baby. They might then have to explain this choice toother people.As a counsellor, it is important to do the following things.Help clients think about why they want to become pregnant.Help clients make informed decisions about becoming pregnant.Assist clients to make informed decisions about PPTCT duringpregnancy, childbirth and infant feeding.Let clients develop problem-solving and coping skills.Help clients to make choices and decisions about disclosure.Let clients find a lifestyle that allows them to take care ofthemselves and their baby.16 17

As a counsellor, it is important to do the following things.Give your client correct information about the risks andconsequences of having a child, if the mother is HIV positive.Counsel couples about what it means to have a child. Always acceptyour clients’ values, attitudes and beliefs about children, even if theyare different from your own beliefs.REMEMBERUnderstand that some couples would rather not know their HIVstatus. Listen to their fears about HIV and AIDS. Help them tounderstand the advantages, for themselves and their baby, ofknowing their status.Refer clients for testing, if they wish to know their status. Theywill then be able to take steps to prevent transmission to theirbaby. You can read more about this on pages 26-28.Give your clients correct information about treatment andmanagement of HIV and AIDS. Some of your clients’ fears mightbe because they do not have good information. Many peoplebelieve that they will get very sick and die quickly if they have HIV.Some couples would rather not disclose their status to health workers attheir antenatal clinic, because of fear of discrimination. Listen to theirfears, and give information about support groups in their area.Testing for HIVIt is important for anyone to know their HIV status. It does not matter ifthey want to fall pregnant or not, they should still find out their status.If someone tests negative for HIV, he or she must try to stay HIV negative.If someone tests positive for HIV, he or she can then:Practise safe sex, so that other people are protected from infection.The person can then protect him or herself from re-infection.Do everything possible to live a healthy life.Take the correct treatment for HIV and AIDS. This is called ART, .or anti-retroviral treatment.The sooner someone living with HIV and AIDS starts living positively, .and takes the correct treatment for HIV and AIDS, the better his or herchance of living a long, healthy life.Why test for HIV during pregnancy?An HIV-positive mother can pass the virus to her baby even before it .is born. Remember that HIV is transmitted between adults through .body fluids, such as semen or blood. HIV is transmitted in the same .way between a mother and her baby, through body fluids and blood.Mother-to-Child TransmissionBefore childbirthHIV is passed from the mother to her unborn baby while the baby isstill growing inside her womb (uterus). This is because the mother’sblood can sometimes mix with the baby’s blood while the baby is stillin the womb.During childbirthThe baby can be infected through close contact with the mother’s .body fluids during childbirth.After childbirthThis normally happens during breastfeeding, when the baby drinks themother’s breastmilk.18 19

If a baby or child does test positive for HIV, he or she needs to be takento a doctor as soon as possible. The child can still live a healthy life formany years, because there are special ARTs for children.If an HIV-positive mother does not take prevention of mother-to-childtransmission measures, there is a chance that her baby will be bornwith HIV. 40 out of every 100 babies born to HIV-positive mothers areborn with HIV.With PMTCT measures, however, only 15 out of every 100 babiesborn to HIV-positive mothers will be born HIV positive.REMEMBERTaking PMTCT measures does not stop all transmission of HIV.As a counsellor, you must inform your client of this. It is the client’sdecision whether or not to have a child, but your role as a counsellor isto help them make this decision knowing the risks and consequencesof having a child.Testimony 1: The choiceto have a baby is ours“My husband, Madalo, and I had been married forthree years when we decided to have a baby. Verysoon I fell pregnant, and we had a baby girl. We werevery sad when she died at 2 years old. She was alwayssick with something or other.I visited a counsellor to help me with my grief. My counsellor said it might bea good thing to go for VCT. I was afraid, but with my counsellor’s support I hadan HIV test. It came back positive.I put together all my courage, and told Madalo. We both visited the counsellor,and Madalo took an HIV test. It was also positive. Not too long after this, myhusband’s parents started to ask questions about us having another child. “Youare not doing the right thing”, they said. “Maybe you are not a good wife to ourson,” they said.Madalo and I talked again to our counsellor who told us about somethingcalled PMTCT, that helps to stop the new baby getting HIV. But when wespoke about it, we both agreed that we could not have another heartbreak.It was hard for us, because of our traditions, but we decided that having ababy is our choice, not our parents.Today we do have a child! She is a beautiful girl, and she is four years old.We adopted her from an organisation near our home, and we are allhappy. We know this was the right thing for us to do.”Madalo and Zaida, proud parents20 21

Why test for HIV before conception?It is possible to help prevent MTCT of HIV after becoming pregnant,but it is even better to start taking steps to prevent MTCT beforeconception. With careful planning, a woman can reduce the amount ofHIV in her blood (her viral load) before she conceives. This will reducethe chances of MTCT.It is for this reason that it is important for couples to test for HIVbefore pregnancy. In this way, they will be able to give their baby thebest possible chance of being healthy.If your client tests positive for HIV and wants to have a baby, suggestthat she has more tests to find out her CD4 count and her viral load.If her viral load is low, there is less chance of MTCT. If her viral loadis high, her health worker might suggest that she begin taking ART.After a few months, the ART will bring down her viral load.ART and conceptionIf your client is already taking HAART, ask her which ARVs she istaking. Some ARVs can be dangerous for unborn babies, and theycan cause birth defects. Suggest that your client visits her doctorimmediately, so that she can take different ARVs that are not dangerousfor her baby. If your client is already pregnant and taking ARVs, sheshould see her doctor as soon as possible to find out if the type of ARVshe is taking is safe for the baby.Try to learn the names of the ARV medicines prescribed in your area.Find out which ones are safe for pregnant women, and which ones aredangerous. Some ARVs are dangerous for men and women who want tohave children.Testimony 2:Speak to your doctor“I have always wanted at least one child of my .own – and today, after being HIV positive for 13years, I have a beautiful, healthy boy. Let me tell youhow this happened.I am now 30 years old, but I tested HIV positive when I was 17. I first thoughtthat I was going to die. Then I thought that even if I lived for a few years, Iwould be too sick to have a baby.But about five years ago I started taking ARTs, and soon I was so much betterthat I decided the time was right to have a baby. I was still afraid, though. Ithought that my doctor would criticise me, and refuse to treat me. I used tovisit her every month, but I stopped seeing her while I was trying to becomepregnant.My adherence counsellor helped me to realise that if I wanted the best formy own health and that of my planned baby, I should talk to the person whowas caring for my health – my doctor! Eventually I went to visit her, and toldher my plans. Instead of her being angry with me, she was excited that I wasfeeling so positive about my future. And more importantly, she explainedto me that one of the ARV medicines I was taking would damage mybaby! I am so glad I spoke to her.She changed my treatment, and a few months later I conceived myboy. Because I was open about my HIV status, I was not afraid to askfor birth by the Caesar operation. I chose to feed my baby with milkformula. It is lucky that I live in a city with clean water from a tap. .My boy is HIV negative, and I am still healthy and well.”Josina, 30 years old22For example, if a woman conceives while taking Efavirenz, a type of ARV,there is a chance that her baby will be abnormal. An ultrasound scanwill show the mother and the health workers if the baby is normal orabnormal. As a counsellor, you will need to counsel the mother aroundthe possibility of an abnormal child, the challenges that may arrive,and her right to choose a termination. Encourage your client to checkwith her health worker which ARVs can cause abnormalities in unbornchildren.23

Discordant couplesA discordant couple is a couple where one partner is HIV positive andthe other partner is HIV negative.If a discordant couple wants to have a baby together, they will need tohave sex without a condom. There is a chance that the HIV-positivepartner will infect the HIV-negative partner. However, this need nothappen. Discordant couples can choose artificial insemination or .sperm washing.Some hospitals, clinics and private doctors offer a service called artificialinsemination to help couples have babies. When the woman is HIVpositive and her partner is HIV negative, artificial insemination meansthat the doctor takes the man’s sperm and puts it inside the woman,without the couple having unprotected sex. The man is thereforeprotected from HIV infection from his partner.If the woman is HIV negative and the man is HIV positive, some privatehospitals offer sperm washing followed by artificial insemination. Washingthe sperm removes all the HIV found in the fluid around the sperm.Therefore only sperm, and not HIV-infected cells, are used in artificialinsemination.Discordant couples can .maintain a happy and .healthy relationship.As a counsellor, you could keep a list of clinics and hospitals in yourarea that offer artificial insemination and sperm-washing services.Termination of pregnancySome HIV-positive women or couples have unplanned pregnancies, andthey might feel it would be better for them not to have the baby. Theymight not want to take the chance of the baby being infected with HIV, andworry that they will not be able to take care of a sick child because of theirown HIV infection. They may also be worried that they will be too sick tolook after a child, or that they may die.Termination of pregnancy (also known as a TOP or an abortion) islegal in many countries in southern Africa. Many government clinicsoffer termination of pregnancy for free. The least risky time to terminate apregnancy is in the first three months (12 weeks) of pregnancy.As a counsellor, is it important to do the following things.Help your client understand why she does not want to continue with herpregnancy. Some of her fears about HIV and pregnancy might be becauseof a lack of information.Give the couple accurate information about:– the risks of parent-to-child transmission of HIV;– ways of trying to prevent parent-to-child transmission of HIV;– positive living, so that she and her partner can stay healthy for along time.Know your country’s laws about termination of pregnancy.Have a list of clinics and health workers who will be able tohelp your client, if she and her partner decide to terminate thepregnancy.Help the couple make an informed decision about continuing(carrying on) or discontinuing (not carrying on) the pregnancy.Do not judge them for their decision.Remember that in many cultures, women are expected to havechildren. There is a stigma to being childless, or terminatinga pregnancy. Many women may wish to keep their decision toterminate a secret. This might be because they fear violence fromtheir partner, or anger from their community. Remind your clientthat you will keep her story confidential.Inform your client about other choices, like adoption and foster care.24 25

Prevention of MTCTPMTCT during pregnancyIf a mother, who is not already taking ARVs, wants a natural birth she needsto take ARVs at some point before or during her labour. Exactly when shehas to take them depends on the kind of drugs available at the health clinic.Some are taken four weeks before labour, others are only taken duringlabour. Read more about ARVs during pregnancy on page 22.PMTCT during childbirthPMTCT programmes help to prevent a baby from being infected with HIVduring the birth process. MTCT can be reduced if:an HIV-positive mother gives birth by planned operation, such as a .C-section or Caesarean. This means that the baby will not come intoas much contact with the mother’s body fluids during birth. .The chance of infection is then reduced;a mother who wants a natural birth takes ARVs before or duringlabour, depending on the ARVs available;the baby is given a short course of ARVs once it is born.For more information on ARV treatment, read SAT’s HIV CounsellingSeries No. 12: Guidelines for Counselling on ARV Treatment.PMTCT during infant feedingBreastfeeding gives a newborn baby the best possible nutrition. It alsoboosts the infant’s immune system, and reduces the risk of the baby gettingdiarrhoea. Diarrhoea is a cause of many deaths among infants in southernAfrica. However, there is a risk that an HIV-positive mother might transmitHIV to her baby through breastfeeding.Health workers have different thoughts about whether or not an HIV-positivemother should breastfeed. This is what the World Health Organizationrecommends:It is essential that mothers decide on ONE WAY ONLY of feeding their baby:either breastfeeding ONLY; or milk formula ONLY. Mixed feeding, which is acombination of breastmilk, formula and food, gives the baby the biggest chanceof getting HIV from the mother.As a counsellor, it is important to do the following things.Provide accurate, helpful information. This will help your client makeinformed decisions about PMTCT. Make a list of the hospitals, clinics orNGOs in your area that offer PMTCT programmes.Remind your clients that even with a good PMTCT programme, thereis still a chance that the baby will be born HIV positive. Help the couplethink about the possibility of having a baby with HIV.Understand that your client may not wish to disclose her HIV status toher health workers. She will then not be able to participate in the PMTCTprogramme. Do not judge your client, but help her to think carefullyabout her choices.Prepare your client for the possibility that she might have to start takinglong-term ART after she has given birth. She might be worried aboutARTs, because she may think they are dangerous. Find out as muchas you can about the ART medicines and programme at the clinics inyour area, so that you are able to provide accurate information. Thismeans taking the right drugs at the right time, every day.Exclusive breastfeeding means giving the baby breastmilk only, untilthe baby is six months old. This means no water, cow’s milk, infantformula or other food. The baby must only be given breastmilk, andmedicine given by a doctor or nurse. Anything else will upset thebaby’s stomach, and make it easier for HIV to get into his or her body.Exclusive breastfeeding is recommended for women:who cannot afford to buy formula. In some countries, formulais sometimes provided free for six months – find out what yourcountry provides;who do not have access to clean tap water;who are afraid of the stigma if they feed using formula.26 27

A woman who chooses to breastfeed should have a low viral load and ahigh CD4 count. In other words, she should not have AIDS.If a mother who is practising exclusive breastfeeding gets mastitis (aninfection of the breast and nipples), she must not stop breastfeeding.She must NOT give mixed food to her baby. Health workers suggestthat she feeds from the uninfected breast, and expresses the milkfrom her infected breast. She must throw away this infected milk.Exclusive formula feeding means giving the baby only milk formulafrom birth, for six months.Exclusive formula feeding is recommended for women:who have easy access to very clean water. Dirty water could putthe child at risk of infection and diarrhoea;who have access to free or cheap milk formula;who will always be able to get milk formula, and will never have .to breastfeed.Testimony 3:The neighbours willstart to talk…“My girlfriend, Nteseng, and I are HIV positive,but we have not told anyone about this yet. We have anew baby – she is only two weeks old. In our cultureit is expected that my girlfriend breastfeeds our baby. Our counsellor hasexplained to us that our baby might become infected with HIV if Ntesengbreastfeeds her.The problem for me is that if we choose the formula, my family and theneighbours will start to talk. In our community, we think that the mothers whouse formula are HIV positive. So, what must we do?Our counsellor helped us to see that we must do what is best, and safe, forNteseng and our baby. I am not ready to disclose, so I don’t want to useformula. I also don’t want the virus to be transmitted to our baby. Ntesengand I have decided that she must breastfeed our baby. Our counsellor told usthat she must only use breastmilk. No other milk, or even water, must passthrough our daughter’s lips.Also, our counsellor is helping us with disclosure. I know I have todisclose. What if people offer tea or water to our baby? We will have toexplain why it is breastmilk only. I hope that if that happens, I will beready to disclose.”Zenzele, 23 years old28 29

As a counsellor it is important to do the following things.Have some knowledge about the attitudes and policies towardbreastfeeding and formula feeding in your area. What do hospitalsand clinics recommend? Do any hospitals and clinics provide formula?How long do they offer it, and is it free?Make sure you know how to mix the formula, as your clients might askyou to show them how to do it. Keep a list of organisations and clinicsin your area that offer advice and assistance in infant feeding.Understand why some clinics and hospitals recommend eitherexclusive breastfeeding or formula feeding.Help your client decide what is the most safe and convenient choice forher personal circumstances. Try to understand her home situation. Forexample, does she have tap water? Help her feel confident about herdecision.Understand that if your client is female and you are male, it may bevery difficult for her to talk to you about breastfeeding. You might alsofeel uncomfortable discussing this topic. Keep a list of breastfeedingexperts and support groups in your area.Realise that there is a lot of stigma around formula feeding. Yourclient might be afraid that if she formula feeds, people will try toguess her status. You could counsel your client about disclosure.Testing a baby for HIVThe only way to know for sure if a baby has been born with HIV is with anHIV test. Sometimes an HIV-positive baby gets sick more often than otherbabies, and does not grow well. At other times, an HIV-positive baby is welland seems healthy.There are two kinds of HIV tests for babies. One is a test for HIV antibodies,and the other is a test for the HIV virus itself (a PCR test).HIV antibody testWhen someone comes into contact with a virus, his or her blood reacts againstthe virus to make antibodies. Because antibodies from the mother can crossover to the baby, the baby will be born with the mother’s antibodies. Sometimesa child will take one or two years to develop his or her own antibodies.A test for HIV antibodies can be done on an infant who is one year old. .If the test is negative, then the baby is HIV negative.If the test is HIV positive, it could be the mother’s antibodies that arecausing the test to be positive. In this case, the mother will not be told theresult, and the test is repeated at 18 months.Many hospitals and clinics in poorer areas still offer only the test forantibodies, because they do not have the equipment for a PCR test.PCR testA PCR test looks for the HI-virus itself. This test can be done at the ageof four weeks. The test is then 90 per cent accurate. It can also be doneat six weeks, and it is then about 99 per cent accurate.30 31

As a counsellor, it is important to encourage your client to have herbaby tested for HIV. It is also important, as a counsellor, to do thefollowing things.Understand that your client might be feeling guilt and anger. This couldbe at herself or her partner, around the possibility of infecting their babywith HIV.Give them a chance to talk about their feelings about their own HIVinfection. Also let them talk about their fears for themselves and theirchild, if he or she is HIV positive. For example, many parents fear that anHIV-positive child will hate them, and wish he or she had not been born.Remember that some of your client’s fears could be because they do nothave correct information about HIV and treatment. Give your clientaccurate information about treatment for HIV and AIDS for adults andchildren.Understand your client’s fears of the unknown – they might have to waitfor almost two years to find out if their child is HIV positive.Other issues to think about as a counsellor.Many women struggle to keep up with all their household tasks as well .as a newborn baby. If a woman is also trying to remember to take herown HAART, or give ART to a baby, she will struggle and will needsupport.A couple who is HIV positive might want to appoint someone to be thelegal guardian of their child or children. This person could care for thechildren if they become too ill. You could guide your client to make theright decisions on who to ask to be a guardian.Help your client understand that it is important to involve the child inmaking these decisions, if they are old enough. Your client may choose todecide on behalf of the child. Do not judge your client’s decision, but helpthem explore the consequences.Find out how to make a legal will, and how to appoint someone as a legalguardian.Make a list of organisations and counsellors who specialise in legal help.You could then refer your client to someone with more knowledge andexperience.Help your client or clients understand that it is important to practisesafe sex while pregnant and after the baby is born. This will stop .re-infection.DisclosureDisclosure is telling people your HIV status. It can be very frighteningfor people who have not yet talked about their status.Being pregnant can sometimes force people to disclose. This is veryfrightening. Many choices around having a child, childbirth and feeding willdepend on disclosure.If your client does decide to disclose, he or she will need your support as acounsellor. He or she will need to decide:who to tell;how to tell them;when to tell them.For more information on disclosure, read SATs HIV Counselling Series No. 1:Counselling Guidelines on Disclosure of HIV Status.Why is disclosure a good idea?Disclosure can help people get medical services, care and support.Someone who has disclosed is free to make the best choices aroundPMTCT and PPTCT.Someone who has disclosed his or her HIV status is usually morestrict about their infant-feeding choices. This is because they are notafraid of other people’s opinions.Someone who has disclosed usually lives a more healthy life.Disclosure helps to reduce the stigma, discrimination and denialaround HIV and AIDS.32 33

The fear of domestic violence is one of the reasons why some women areafraid to have an HIV test, or to ask for ways to help prevent mother-tochildtransmission. For example, she might choose natural childbirth,or breastfeed, so that no-one in her community thinks she might be HIVpositive.For information about counselling around issues of domestic violence,read SAT’s Counselling Guidelines Series No. 4: Counselling Guidelineson Domestic Violence.If your client’s baby is HIV positive, eventually she and her partner willneed to disclose the child’s status to the child, as well as to caregiversand treatment supporters. Disclosing to a child can be difficult. Healthworkers do not all agree on the right age and right way to disclose.Where To Go for MoreInformation.You can make a list on this page of the places in your area that can give you,or your client, more information about HIV and pregnancy.REMEMBERKeep a list of any organisations or counsellors in your area thatspecialise in HIV-positive children. Find out as much as you can fromthem about disclosing to children. You may choose to refer your client toone of these specialists.3435

36Notes

SAT’s HIV Counselling SeriesThis is a series of guidelines for counselling people who are:infected with HIV;concerned about being infected with HIV;living with or caring for people with HIV and AIDS.Each book in the series gives practical guidance on specific counsellingissues. They are designed to be used by community counsellors, but areuseful to anyone who provides counselling and support. SAT has publishedcounselling guidelines in English and Portuguese with the following titles:Number 1: Counselling Guidelines on Disclosure of HIV StatusNumber 2: Counselling Guidelines on Child Sexual AbuseNumber 3: Counselling Guidelines on Palliative Care and BereavementNumber 4: Counselling Guidelines on Domestic ViolenceNumber 5: Counselling Guidelines for Survival Skills for People Livingwith HIVNumber 6: Basic AIDS Counselling GuidelinesNumber 7:Guidelines for Counselling Children Infected with HIV orAffected by HIV and AIDSNumber 8: Counselling Guidelines on Stress ManagementNumber 9: Guidelines for Counselling Men who have Sex with MenNumber 10: Guidelines for Counselling for HIV PreventionNumber 11: Guidelines for Counselling Youth on SexualityNumber 12: Guidelines for Counselling on ARV TreatmentNumber 13: Guidelines for Counselling around HIV and PregnancyCopies of these publications can be downloaded from: www.satregional.org000824