Children with AIDS/HIV+ in a Black South African Township

Visiting a center that serves children with AIDS in a Black South African township

September 28, 2009

Today was the first day of the 3 ½ week program (actually the second residency period in an 8-month program) in Collective Narrative Practices for Working with Groups Dealing with Hardship and Trauma, which was the impetus for my trip to Africa (for more information see DulwichCentre.com.au). Our instructor today, Ncazele, was a faculty member from South Africa who works and teaches narrative practices with children whose suffering is extreme – poverty, abuse and neglect, malnutrition, death of one or both parents, HIV/AIDS positive status. And one of the things that I value most about the narrative approach is that it never views children or others as the passive recipients of trauma. They all respond in many significant ways to problems and challenges that they face, drawing upon skills and knowledge that are often unseen and unheralded by other models. Hearing Ncasele describe in vivid detail how she uses these practices to support children, caregivers and families is very inspiring. She has a special ability to hear people empathically, to support them in the celebration of their skills of survival, and to assist them in holding passionately their hopes and dreams for themselves and others.

The scope of the HIV/AIDS problem in South Africa is mind-boggling. In some areas as many as one third of the women of child-bearing age are HIV positive. The overall proportion for the whole population is 10% and women, the primary caregivers of children, the elderly and the sick, are more severely affected than men. Only a small proportion (approximately 5%) of those who are affected are receiving suitable medication and there are many, many problems even when medication is available. With children who are HIV positive a big issue is when (or if) to tell them of their HIV status. Many caregivers tell the children that they are being treated for pneumonia or tuberculosis because they don't want the children to tell others for fear that they and/or the whole family will be stigmatized. It then becomes very difficult to give the children the medical and emotional support that they need in order to cope most effectively with their illness.

It's not fun to take pills multiple times a day, every day, for the rest of your life.(I have a lot of difficulty adhering to my vitamin schedule which is so much less serious an issue, so I know that from personal experience.) Sometimes it just seems like a chore and a bother and who wants to do that. It is also true that the medications make people more hungry and many people don't get enough to eat as it is. Because of the discomfort of feeling hungry so much some discontinue their medications for that reason. Also, the South African government gives a grant of 900 Rands a month (about $135) to people whose T cell count is below 200. But if the T cell count goes over 200, the grant stops. So, people will take the medication until the count improves but then quit when it reaches 200. This type of going on and off meds increases the resistance to the effectiveness of the medication.

Children and teens, of course, want to be like their peers. Finding the time to take the pills, to have them with you on a suitable schedule, to risk the embarrassment and rejection from peers – these are all powerful contributors to non-adherence to the medication regimen. At this center the children feel accepted - “I feel free here.” How much education is needed for AIDS to be treated like any other medical condition – not a social disease!

WHAT DO THE CHILDREN AND CAREGIVERS WANT YOU TO KNOW ABOUT THEM?

At various points we asked the children what messages they would like us to take home to our country (Our group included people from China, Australia, Denmark, Norway, Chile, U.S., and Canada). The most common request was that we let people know that there is more to Africa than suffering and poverty – that they are a strong people who also celebrate the life they have, the joy they find with each other and the value of community and family. They want to be know for their spirit, togetherness and joys in living as well as for the challenges that they face. They also do value support for getting medical treatment, food and shelter, As one counselor said “Tell them that AIDS is here and it is serious and that we are stronger than AIDS”