|Caring with Confidence - Practical information for health workers who prevent and treat HIV infection in children (AHRTAG, 1997, 60 p.)|
|Section 4. Issues for health workers|
Health workers play an important role in helping caregivers to cope when a child has HIV and AIDS and in helping to ensure that the needs of children affected by HIV and AIDS are considered. In addition to providing practical and emotional support to carers, specific issues which health workers may need to deal with include:
· emphasising the importance of living positively for children with HIV and AIDS as well as for adults
· helping parents to talk to a young child about HIV and AIDS
· talking to the mother and other members of the family about the fact that the child may die at a young age, and helping them to come to terms with the death of a child or the fact that their child is dying
· discussing with parents who have HIV or AIDS what will happen to their children after they die.
Health workers can provide practical and emotional support to carers of children with HIV.
Children with HIV and AIDS should live as normal a life as possible.
Children living positively
Carers need to be aware that, with proper care, nutrition and treatment, young children can survive for several years and will not be sick all the time. Infants and young children with HIV and AIDS should live as normal a life as possible, participating in family and community activities and playing with other children.
Talking to children about HIV and AIDS
These basic guidelines may help when talking with young children.
· Be honest in answering questions.
· Tell the child enough but do not burden him or her with information about things he or she has no control over.
· Bear in mind that young children have a different concept of time - to a young child two years is a very long time.
· If you are telling a child he or she has HIV, you do not need to describe what it is in detail, but it is important to be honest about the fact that it may make the child sick from time to time.
· Be prepared to answer questions such as: 'Will it hurt? Will I die?'
· When children are close to someone who has AIDS or HIV, try to give them a message of concern and hope. When a parent is ill, the child's anxiety and concern will be much greater, but the message can continue in the same vein. 'Yes, Daddy is sick but he is doing all he can to keep himself strong and healthy and right now, things seem to be okay.' If the disease progresses and the person is obviously becoming more ill, it is appropriate to discuss this openly with the child. 'We are still hoping Daddy will feel better soon, but he may not. What do you think about that?'
· It may be helpful to discuss ideas about death and dying in general, outside the context of the sick individual. The possibility of the person's death should also be discussed frankly with the child.
Confidentiality and children.
Confidentiality is a difficult issue in relation to children.
The mother or parents have to decide whether or not anyone else is told that the child has HIV and who to tell. What she or they decide to do will depend on circumstances. Telling others, such as relations and neighbours, may have benefits such as extra help and support. But it could also place the parents and the child at risk of stigma, rejection and discrimination.
If the child's mother or both parents have died and the child is being cared for by another relative, should the carer be told that the child has HIV? Should the grandmother who is caring for a child with HIV be told of the child's status if the mother is alive at home?
Support of friends or neighbours can help mothers to cope with the illness and death of a young child.
Crispin Hughes/Panos Pictures
Suggested steps in answering children's questions:
1. Listen carefully to the question.
2. If the meaning behind the question is not clear, or to better understand what the child is trying to ask, you could say, 'I wonder where you heard about that?' or 'Do you have any ideas what the answer might be?' This may give you more information to help answer the question.
3. Give simple, concise answers. Complicated words and lengthy replies may not be understood or the child may stop listening.
4. Check to see if the child understands.
Dealing with illness and death in a young child
Talking to the mother
Telling a mother that her child will die or is dying is probably one of the most difficult things a health worker or counsellor will ever have to do. There is no easy or right way to do this, and it needs to be handled very sensitively and gently. In most cases, telling a mother that her child has HIV also implies that she herself is infected.
It may help to think about the following issues.
· Where are you going to tell her? The place should be quiet and private and somewhere where she will be able to talk about her feelings comfortably. You also need to make sure that you allow enough time for her.
· How are you going to tell her? What words will you use? What is her situation? How do people in your culture feel about the death of a child? How will you bring the subject up? You could start by asking her how well (or ill) she thinks the child is and what concerns and worries she has about him or her. In cultures where talking about anticipated death is taboo, a health worker could instead say 'your child is likely to keep getting illnesses and each illness is likely to be more serious than the one before'.
· What might her emotions and feelings be? This can prepare you to talk to her about them. She may, for example, feel guilty if she thinks she is to blame. She may be sick herself and her child may have been her main reason for living.
· What support does she have available? Can she talk about it with her partner, parents, friends or neighbours? Or are they unaware of the baby's HIV infection? She may experience feelings of great sadness, hopelessness and despair. Who can she discuss her feelings with? Make sure she knows she can come back and talk to you again. She will be in shock and will need time to think. She may want to come back and talk about her feelings and any worries and questions later.
· How can she tell others? The mother may or may not decide to tell her partner, older children or other relatives about the baby's illness, but she needs to be helped to consider whether this is wise and how she will do it.
· What suggestions can you make to help her? Can you put her in contact with other women in the same situation? Are there any support groups for women and mothers? Is there a community care and support programme she can be helped by?
· What practical concerns or questions might she have? This can prepare you to answer them. For example, she may want to know how long her child will live, whether he or she will be in pain, what she can do to make things easier for the child, whether he or she will need to go to hospital. She may be worried about hospital or funeral expenses.
Looking after a child who is dying is stressful and upsetting and adds to the burden of household work for women. Counselling can help them to cope and to solve problems such as identifying someone else to provide practical support.
When death is near, the family of the child will need emotional support, especially if they find it difficult to accept what is happening.
Health and community workers can offer and provide support to families, listening to them, helping to share their grief and giving comfort, as well as providing practical help. Unless invited to stay and help, the health worker should leave the family to mourn the child according to their cultural tradition.
After the child has died, families should take the same precautions when handling the body and with funeral arrangements as they did when the child was alive. These precautions include covering open wounds and sores, especially when handling, laying out and cleaning the body, to avoid contact with infected body fluids.
Dealing with children's questions
Here are some ideas about answering children's questions which you could adapt.
Does AIDS hurt?
Most people with AIDS feel sick a lot of the time. Some people with AIDS feel okay. AIDS hurts during the times people with AIDS feel sick.
Does HIV infection hurt?
Some people with HIV feel fine. Some people with HIV feel sick. HIV hurts when people who have it feel sick.
Can doctors make people with AIDS better?
Sometimes doctors can help people with AIDS feel better, but no one knows how to get the germs out of the body once they have got it.
How long are people sick with AIDS?
People with AIDS will probably be sick their whole lives. AIDS doesn't go away the way a cold does.
Do people get AIDS from being bad? (Are people with AIDS being punished for doing bad things?) Do bad people get AIDS?
No. AIDS is caused by a germ. People get AIDS because the AIDS germ got into their body somehow. All kinds of people get AIDS. Getting AIDS doesn't have anything to do with whether someone is good or bad. Germs don't know whether a person is good or bad.
How do children get AIDS?
If a woman who has the AIDS germ gets pregnant and has a baby, the baby might get the AIDS germ from her. This is how most children with AIDS have got it. Some children who were very sick with other illness were given special treatments called 'blood transfusions'. This means a little blood from another person is given to a sick person who needs it. If the AIDS germ was in the blood used for transfusions, the children who received the blood got AIDS.
What happens to children with AIDS?
Children with AIDS are a lot like other children with other illnesses and are quite often sick, but they will also feel better sometimes too.
What happens when you die?
Depending on the age and level of understanding of the child, you could use the following responses:
What do you think happens? (Elicit response from child.)
When a person dies, the things that made him or her alive stop happening. He or she doesn't breathe any more, and blood stops flowing in his or her body. He or she doesn't talk or laugh or cry or move. His or her life is over.
Don't make up things for children that you don't believe yourself. Don't tell children that dying is 'like going to sleep, except you never wake up'. This may create anxieties about death and about going to sleep.
This is an example of the way one parent described death to her seven-year-old:
'I believe when someone dies, the person's soul - an invisible part of him or her that feels feelings and cares for people - goes to a special place. Some people call this heaven, all the things that hurt someone during life no longer hurt. I think it's a nice place to be.'
Considering the child
Make a child who is dying as comfortable as possible. This includes keeping them warm and dry, and providing pain relief if they seem to be in pain. Families should be encouraged to hug and touch the child and to involve them in family activities as much as possible - in very young children, non-verbal communication is very important.
Before the age of five it may be difficult to explain to a child that they are dying. But children often understand more than we think about what is going on. If a parent has died they may already be familiar with death. Children, like adults, may be sad, angry, afraid or anxious. Very young children may express anxiety through their behaviour, for example, suddenly being frightened of going to bed or being away from their mother.
It is important for children to have the opportunity to talk, to voice their feelings and fears. Just because they are silent does not mean they have no questions or are not worried.
If they ask questions, it is important to answer them simply and as honestly as possible. Adults may fear upsetting the child by telling the truth, but the child may be more scared and upset if he or she feels that secrets are being kept from him or her. If the child expresses fear about dying, focus on day to day plans and help him or her decide, if appropriate, who he or she wants to give special possessions to.
Planning for a child's future
Health and community workers can help parents who are sick or dying to plan for their children's future. What will happen to their children when they die is often parents' first concern. The decision about what happens to children may be taken by the father's family or the mother's family, depending on the culture.
Whoever takes the decision, planning ahead can relieve worry. Providing advice about legal, property and financial matters may be helpful. Where feasible, parents should make a legally binding will, to ensure that children inherit money or property, and that their wishes about who takes care of the children are made clear.
Practical issues to be considered include decisions about who will care for a child and guardianship, inheritance of land and property and decisions about schooling. Parents often want their children to stay together, and this is usually what the children themselves want too. As far as possible, depending on their age and family circumstances, children should be involved in decisions about their future and their wishes should be taken into account.