CREATE : Phila Impilo Video

Do you remember the puppets we made? What was special for you about the puppets?

They taught me to remember my treatment. They gave me hope when I was tired.

The puppet was my friend. It let me express what I felt but could not say. Like my dog, I could play with it.

Children can often express more easily how they feel through drawings. This helps them to deal with inner pain, and let go of emotional stress. As an artist, I see that these pictures reveal the children’s perceptions.

Some illnesses interrupt people’s lives. Some miss school. Some people walk slowly. They lose their breath and cough. Others can’t work because of illness.

The puppets helped us to deal with bigger illnesses than chicken pox and flu. We made a big tree about health and what kind of illnesses we deal with. We stuck types of illnesses on the tree, and ideas for healing.

Big illnesses that affect children the most are TB, HIV, Cancer and Epilepsy. This drawing shows someone with TB. “I’m always tired when I walk. My feet hurt.”

We should not be scared of people with TB. There’s lots of children in hospital who are suffering from TB.

I think we should play with them but we should not kiss them… (laughing) Because we will contract TB.

When we go out we should use a car, because other children might laugh at us because we have TB,

If there is TB in the family, the children can be affected by TB.

Children lose weight just as adults do. They lose their appetite. They prefer different foods. They return to drinking milk, like babies. You might see lumps on the neck which are not painful. They may burst and that can be TB. Children may have chest pains. Glands may squeeze the windpipe and make it hard to breathe. This causes children to “wheeze”. Children seldom cough up blood like adults. Do but they may be able to complain about sore chests, like adults. A toddler will experience problems to walk and sit and crawl. That shows the child is tired, a symptom of TB.

There’s a form of TB, that’s TB Meningitis, that affects the brain. Very often, very subtle signs and very difficult to pick up because they are vague. A child might be very sleepy, whereas before may have been very active child, just be very sleepy. Or might say they don’t like looking at a bright light. The mother might even notice a slight weakness of one side if the body. Um, a child, a baby can be very irritable because a child can’t talk and say I’ve got a headache.

Such children should receive immediate hospital treatment. A child can get TB of the spine. A mother will find a lump on the child’s back.

There are some signs of symptoms and similar, others are different in children. And like the adults cough, children will have a cough. And can be a cough that comes and then goes.

Since TB is a slow disease, infected mothers should realise that 6 months down the line, their children may also have TB. Children under 5 years old especially, should get preventative treatment.

Children’s TB can be cured. But we don’t want the devastating effect when things are left too late. I think that people realise that now children can be a guide to what is happening in an adult epidemic.

I was at home when my mother told me that she was HIV positive, and I was too. I was shocked when she told me that I had it. I thought that I did not have it. We were both in bed. My tummy was sore and my mother took me to the clinic. That made me understand why I was sick. I got medicine, then I felt better. Children do not play with me at first. As time passes, they do play with me. It is better for parents to tell their children…what sorts of illnesses they have. Some (people) disclose and some choose to keep quiet. Those who keep quiet are scared that people will laugh at them.

It’s all right for our mothers to tell us the kind of virus we have, to tell us when it is HIV.

We should play with them, but we should be careful not to touch their blood, because we might get the disease.

I think we should stay with people who have HIV/AIDS because we are supposed to care for them, play with them and give them nutritional meals.

I think it’s a great idea because it will make children who have HIV feel much better and forget that they have it.

We’re a specialised hospital. We are a referral unit for children who have got TB and complicated TB. Um, particularly multi-drug resistant TB and either complications of the TB treatment and TB Meningitis.

Yes, some of the children have HIV… …but many parents find it difficult to disclose to their children.

We’ve had a team from overseas here, who’s been helping us with this.

I’m Diane Melvin. I’m a clinical child psychologist who’s come out here to South Africa to the Durban area of KwaZulu-Natal, with a group called the CHIVA group, which is the Children’s HIV Association.

Where I work at St Mary’s and Great Ormond Street Hospitals, we try hard not to see children in terms of their illness. We see all children, as children. Chronically sick children have interests, needs and rights… just as other children do. In South Africa there are more children who lose their loved ones… than is the case in my country. Children face problems of illness alone, or they often do so with people whom they don’t know very well. Often adults don’t talk about death in the family. Because of this, children cannot express their inner feelings about persons whom they loved. Many children like to celebrate… the good times they shared with loved ones.

People should not be afraid… of children who are HIV positive.

They cannot spread it… when they do the normal things that children do.

For now, HIV has no cure, but there are medicines that help to control it. So that children don’t have to stay a very long time in hospital.

Bu they can go and do the things that children do. Have fun, go to school, um, join in, any activity that’s there for them.

I think that many people wonder how children feel about medical treatment.

Children do have treatment and it helps them, but they don’t necessarily like it.

I take my pills, but there are children who throw theirs away. They should finish their treatment so that the TB can be cured.

This is where the children have some treatment. This is for the drips to save some of the pain of intramuscular injections. We explain to the children what we do… and we do everything with love. There’s no harm in a bit of bribery even if it’s only a biscuit. It shows that you recognise that they have been brave. We sometimes hear from children that they are afraid… when they first arrive in hospital. Mostly at home in black communities, children sleep with their mothers. They don’t sleep alone. In hospital they are given their own beds. They are in a big open space, unlike at home, which is lockable. We tell the children not to be afraid… because we Aunties are here, and there are security guards at the doors.

Here I drew animals. We don’t want them near us (in hospitals) because we are afraid of them.

I see children are sad when nobody visits them. This drawing by a 13 year old boy shows that the happiest day of his life was the first time his father visited him in hospital. And for this 8 year old girl, the happiest day was her grandmother’s visit to her in hospital.

Not all children come from far away. Some live nearby and parents have the means to visit but don’t always come. Children are sad when they see others with visitors if they have none. They wonder why their parents don’t visit when they live nearby.

I wish she can get well. I like her beautiful work. I come here knowing that I’ll see beautiful work from my granddaughter. I thank this hospital, King George. I see that it’s an important hospital.

Parents come from across KwaZulu and even from the Eastern Cape. It’s hard to come week after week to see their children.

Do you remember the drawings that showed what children love about people coming to visit them in hospital

If they can’t visit us, they can send us cards, write letters and call us on the hospital phone.

This drawing shows a mother visiting her child. Our mothers love to visit and to bring food, like “take-aways”.

What else Sister, would help children to feel comfortable in hospital? What could parents bring for children to feel comfortable?

We don’t encourage parents… to bring things to this hospital. If a child has a special toy, like a teddy bear or a car, they can bring it. We don’t encourage parents to bring blankets or shawls. This is a TB hospital. They might carry germs home. Parents could bring photographs of family members for their children. The child, when missing them, can point them out: “this is my mother, or my father, or my family”. This helps the children to be safe and happy.

Last time we met, we were in the workshops doing drawings. Many of you were doing drawings about your parents and birthdays.

It’s very nice having your birthday in hospital. It shows that they miss you at home when you have the celebration in hospital.

It’s a special day. Your parents remind you of when you were born.

My puppet friend looks after me. When I’m sick at night he rings the bell to call the Aunties to help me.

It is very important that every child is greeted by their name, and that you actually touch them. This says that you are a separate person, not just part of a group.

Take care of it. Don’t open your eyes!

Who do you see?

Me!

The mirror shows that… children are important here on earth. You can place important things in your life… around you. It reminds you of who you are, despite your illness.

We play around this tree and we sit in its shade when it is hot. In hospital it is important for us to have… encouragement, counselling and therapy. This drawing shows a nurse who takes care of us and loves us. The wheelchair helps children go to school.

I’ve done this drawing for my mother, who has passed away. My mother loved me and I loved her. I miss her, and wish she was still alive.

I’ve done this drawing for my mother, who has passed away. My mother loved me and I loved her. I drew this table because she liked it.

See there children, as the wind blows the drawings that we’ve made, it takes the messages that you’ve drawn and written… to the right person’s.

Someone should tell you… if a person dies at home… while you are in hospital. It helps you live a better life.

(singing) My hope, my hope, my desire To go to Heaven And enter God’s Kingdom of Glory.