Early Disclosure to Children Could be Best. 15/2/11

“The more empowered children are in their own health and understand what’s going on with them, they know what the risks are and what the benefits are for ARVs... then the better adherence to their treatment and the more they speak openly about it”.

Health-e

By Ayanday Mhkwanazi
15 February 2011

Sharing a child’s HIV status with them can be a difficult for a caregiver, but according to the Wits Institute for Health HIV and Related Diseases, disclosure has incredible benefits. This week, Health-e News visited an HIV-positive nine year-old boy who proves that early disclosure could be advantageous.

Tebogo Moroke is a small built, almost fragile boy. His eyes are glassy and he doesn’t look his age. What’s captivating about him is his optimism about life and his future.  In his young life, he already has to live with the reality of being HIV-positive and the responsibility that comes with it. But, unlike worrying about the disease, he says he is living a ‘stress-free life’. What is remarkable is that Tebogo is using his time to teach others like his friends about HIV/AIDS.

“When they fall down while we’re playing and I see blood, I tell them that they should not touch each other’s blood. They should go to their mommies and ask for bandages after the wound has been cleaned. Don’t do bad things because you can get HIV or TB or another illness”.

Tebogo has lived with HIV since birth. He had a twin sister who succumbed to death after falling ill when they were three months old. After that Tebogo survived nearly four years of going in and out of hospital, with doctors showing little faith that he would make it. As a result of his ordeal, his dream is to become a doctor to help children just like him.

“When I grow up I want to be a doctor because I like it and that I can help other kids who are HIV-positive take their medication. And I want them to be alright and healthy. Like me, I am healthy because when I play with other children I don’t say I’m tired. I continue playing all the time”, he says.

His friends have embraced him and his status. They say they learn a lot from Tebogo everyday and that his HIV status has never been an issue.

“Tebogo is my friend. We play together all sorts of games. He is a good friend and I enjoy playing with him”, says one of his friends.

“I enjoy playing with Tebogo.  He’s my friend. He even advises us on how to behave. He warns us not to fight with him or make him fall because he could bleed and that could be dangerous. I love everything about him”, says another.

 “Tebogo is a very good friend of mine. We play all the time when we come back from school. He is a good friend that doesn’t like fighting. We treat him normally like our other friends”, another enthuses.

 Tebogo is an inspiration to his mother and the community where they live. His mother, Vivian Moroke, says she only found out that Tebogo is HIV-positive when he was eight months old after requesting the nurses to do an HIV test on him. The first four years of his life were not promising as he was gravely ill. Vivian says the news of her son being HIV-positive was shattering.

 “It was hard to accept the fact that he is HIV-positive. But the nurses gave me the necessary support. I was stressed out while he was in and out of hospital. His health was not promising at all. I even had to resign at work in 2003, so I could look after him”, she explains.

But the trauma did not end there for the Moroke family. In 2005, Tebogo’s condition worsened. He had full-blown AIDS and was bed-ridden.

“He stopped walking or crawling. He had full-blown AIDS and the doctors were afraid he might die. They tried so much to help him. He slowly started improving and regained his strength and mobility. I told him when he was four years-old that he is HIV-positive and I used Nkosi Johnson as a model for him to draw strength and he did. We’ve never looked back since that day”, says Vivian.

 According to the Wits Institute for Sexual Reproductive Health HIV and Related Diseases, Tebogo is a great example of how beneficial it is for children to know their HIV status.  Nataly Woollett from the organisation’s Prevention and Counselling Programme says they encourage care-givers to disclose to their little ones as early as they can.

“The more empowered children are in their own health and understand what’s going on with them, they know what the risks are and what the benefits are for ARVs... then the better adherence to their treatment and the more they speak openly about it”.

She says those who have not been disclosed to, but suspect that they are HIV-positive tend to isolate themselves.

“Self-esteem takes a knock because it is like knowing the big secret, but nobody in the family talks about it. They feel completely disempowered and think something is wrong with them. Children don’t necessarily see their options in that situation - whatever good or bad that happens in the universe, they blame themselves. They subscribe to themselves that they are literally bad kids and that’s how their self-esteem takes a knock”, says Woollett.

The organisation offers counselling sessions to care-givers on how best to disclose to their children. However, Woollett warns that the environment, particularly within the family, has to be conducive for disclosure. 

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