HIV and parents

Protecting your child from HIV infection
As a parent, you can help protect your child from HIV infection, and contribute to the fight against HIV/Aids generally, in the following ways:

Pregnant mothers: If you know you’re HIV-positive, tell your doctor so that precautions can be taken to reduce the risk of transmission to the unborn baby. Antiretroviral medication taken by pregnant mothers can reduce the rate of mother-to-child transmission during pregnancy or delivery from 25% (without medication) to 8% (with medication). If you aren’t sure if you’re HIV-positive but have engaged in high-risk behaviours (unsafe sex, sharing drug needles) that increase the likelihood of HIV transmission, you should get tested for the virus. If you find you are HIV-positive, precautions can be taken to reduce the risk of transmission. You can also start looking after your own health, so that you are as well as possible to take care of your child.

Be a good role model. Children model their parents’ behaviour, so set them a good example by exhibiting behaviour that demonstrates healthy, responsible attitudes to sexuality and informed decision-making, and that discourages prejudice against people with HIV/Aids. Good role modelling has a positive effect not only on your children, but also on the community in which your family lives.

Educate yourself and your children about HIV/Aids and sexuality. Parents need to be knowledgeable about transmission and prevention of HIV/Aids if they are to teach their children how to protect themselves. Aids and sex education policies in terms of what can be taught vary among schools, so don’t rely solely on the school system to provide your children with sufficient information. Practise talking openly with your children about important issues and let them feel free to express their feelings and concerns. If children are used to discussing problems and worries openly with you, by the time they reach the age of sexual experimentation, they will be more likely to confide in you and approach you for advice.

Educate your children about risks associated with alcohol and drug use and promote abstinence or moderation - by practising what you preach! Alcohol and drug use is considered a risk factor for the transmission of HIV because these substances decrease inhibition, thus increasing the likelihood of engaging in high-risk behaviour such as unprotected sex. Intravenous (injected) drug use carries a very high risk of HIV transmission.

Remember that HIV cannot be transmitted through casual contact, so don’t be fearful if your child is in a classroom with a child who has HIV/Aids, and make sure your child understands they have nothing to fear. There are no reported cases of HIV being transmitted from child to child or child to staff member in a school due to casual contact, fights, biting or contact sports.

Therefore, the risks of infecting other children cannot be used as a reason to exclude HIV-positive children from a school. Legally, parents do not have to tell the school authorities if their child has HIV, even if they are asked to disclose this on the application form.

Make sure children understand that they should get help if someone is bleeding, and not to touch other people's blood or other body fluids or let anyone touch theirs without gloves.

Your responsibilities as an HIV-positive parent
Focus on living positively with HIV and taking care of your health as best you can, so you can be more productive and take care of your children better for longer. It should reduce the amount of time your child might need to spend nursing you, and postpones orphanhood. A positive approach does much to improve your and your family’s psychological well-being and quality of life.

Acknowledge children’s changing roles: children living with HIV-positive parents often have to shoulder responsibilities at a younger age than other children. Children affected by HIV/Aids need not only material support, but also psychological support and skills to help them cope with future challenges. Involving children in working out solutions to problems, such as economic difficulties in the household, helps them feel that their contribution is valued and teaches them useful life skills.

Telling your child you are HIV-positive
A difficult decision you face as a parent is that of whether you should tell your child you are HIV-positive. Children have varying abilities to cope with disclosure, depending on their age and individual maturity. It’s your right to decide whether telling your children will help them deal with present and future challenges posed by your illness, or if it may cause them excessive distress and contribute to their stigmatisation and discrimination at school or in the community. Before telling your child, it’s a good idea to consider the following:

• Many experts feel that children of about seven are old enough to understand death and dying, and have heard about HIV/Aids at school. This does of course depend on the maturity of the individual child. One approach is to start with simple explanations of issues as they come up, and to try to gauge how much information your child can understand and cope with psychologically at each point. If you live in a context where it may be necessary to protect your family from discrimination, be careful how you talk about HIV around your child until she or he is old enough to know when to be discreet.
• Some parents feel that telling their child would just cause distress and make the child’s life harder. However, there are many positive and practical reasons for children to be told:
• Avoiding talking to children about illness in the household can make them feel anxious, guilty and depressed, and can lead to long-term psychological problems. Children are very aware of adult emotions and actions, and may sense that something is wrong. Discussing the situation helps ease their fears and allows them to cope better with the stress.
• Children who are living or caring for an infected parent need to be instructed in the basic precautions so they can protect themselves against contracting HIV or other infections, should the parent have opportunistic diseases.
• Giving children the opportunity to talk about their feelings and experiences allows them to realise they are not alone, and builds self-confidence.
• Talking about death and dying seems morbid, but can in fact be a positive experience for both parents and children. It gives children the chance to get used to the idea of losing you while you are still there to support them, and to eventually say goodbye and start the process of healing. It gives parents peace of mind knowing that the child will be prepared to live without them.
• Children hear incorrect and frightening information about HIV/Aids (e.g. that it’s a punishment for sin, or the result of bewitchment), which may be particularly disturbing to them if they suspect you have the disease. Without open communication, your child could get the message that HIV is shameful and should be kept secret.
• If you yourself haven’t yet come to terms with being HIV-positive, it’s unlikely that you will share this information with your child in a positive way, and it may make him or her highly distressed. If you find the idea of telling your children very difficult, and you are uncertain whether or how to do it, advice from a counsellor is often very helpful. Also try discussing your situation with a trusted friend or relative. Children may also benefit from counselling, if they seem to not be coping.
• A useful tool in the process of saying goodbye is a “memory book”: a journal of family facts and memories for children who are facing the loss of a parent. Compiling the book together with the parent gives children an opportunity to ask questions, strengthens their sense of identity and belonging, allows them to preserve important memories, and helps them cope with present and future stress.