How do you tell a child she has HIV?

Published Jul 31, 2014

Share

Cape Town - For five years after learning about her daughter’s HIV status 32-year-old Amanda (not her real name) of Khayelitsha couldn’t bring herself to break the news to her young daughter.

“I just couldn’t tell her. Part of me was ashamed of having infected her with the virus. I kept on blaming myself… I had this deep sense of guilt within me, and I think that influenced my delayed disclosure to her. I was also concerned about how she would react to the news that she was HIV-positive… I kept the secret for five years all this time I told her that she was taking TB treatment. I made no mention of ARVs at all,” she said.

But last year the mother of three finally plucked up the courage to tell her 11-year-old that she was HIV-positive – thanks to a paediatric HIV disclosure and empowerment programme offered by Ubuntu Africa.

It is an NGO that dedicates itself to providing support services to HIV-positive children in Khayelitsha.

Amanda is not the only one who was scared of disclosing her status though. A Stellenbosch University study found that only nine percent of children who were on ARVs had full disclosure of their illness from parents and caregivers. Fifteen percent of children received partial disclosure while the rest didn’t know about their status at all.

Amanda admits that breaking the news to her daughter was the most difficult thing.

 

After trying to abort the baby in 2003, Amanda was told that she couldn’t terminate the pregnancy as it was too advanced.

“I was angry that I couldn’t have the abortion so I sulked and stayed at home and didn’t attend any antenatal clinic. I only showed up at the clinic when I was in labour. There was no time to take medication to prevent mother-to-child infection and I also didn’t know my HIV status,” she said.

After Amanda and her child developed TB they went for their HIV tests.

Amanda admits that she only told her child about the TB treatment as the disease carried less stigma.

“TB is airborne and anyone can get it, but HIV is a bit of a loaded word… it’s more of a sexually transmitted disease, so it’s not easy talking about. I was worried that she was going to be mocked by her peers if she told them that she was HIV-positive. I wanted to protect her from that ridicule,” she said.

Dr Vivian Cox, an infectious disease specialist at Médecins sans Frontières (MSF) in Khayelitsha, said many parents found it difficult telling their children about their HIV as disclosure was associated with emotions and stigma.

Cox said while no legislation prohibited doctors from telling the children about their HIV-positive status, many doctors were uncomfortable about this disclosure, especially to very young children.

Many doctors partially disclosed to children between seven and 10 years and only gave those between 10 and 14 full disclosure as children understood the disease better at that age. However, Cox said, it remained a parent’s or caregiver’s responsibility to disclose to children, and the doctor’s role was more of providing support and education to facilitate the disclosure.

 

Children kept in the dark

Most HIV-positive children in Cape Town on antiretroviral drugs have not been told their HIV status, and this has meant that many stop taking their tablets.

A Stellenbosch University study, which surveyed almost 200 children on ARVs, aged between two and 13, revealed that only nine percent fully understood their HIV status.

About 15 percent of the children in the Cape Winelands, who formed part of the two-year study, said their status had been partially disclosed to them by their parents, while 76 percent had no idea.

In the research presented at the recent International Aids Conference in Melbourne, researchers argued that the non-disclosure of the HIV status tended to result in children defaulting on their treatment, compared with those who had been told.

Full disclosure is when the disease and treatment are discussed with the child, while partial disclosure means discussing some aspects of the treatment with the child, but no mention of HIV. Despite South Africa applying the international guidelines in HIV/Aids treatment, there was inadequate capacity to deliver. About 54 percent of HIV-positive patients are on antiretrovirals. But sticking to the treatment is crucial.

South Africa has a heavy HIV burden. Despite having only 0.7 percent of the world’s population, the country has about 17 percent of the world’s HIV patients.

Lead researcher Sabine van Elsland said telling children their HIV status was important as it contributed to improved long-term care.

In the latest study, Van Elsland and her colleagues found that about 62 percent of children who had full or partial knowledge of their HIV-positive status stuck to the medicine, compared with 54 percent of those who did not know.

It also found that the children who knew had better health and family life than those who did not.

While the study only involved children and not their parents, Van Elsland concluded that HIV and Aids stigma was to blame for the non-disclosure. Many parents were afraid of the stigma, and that if they told their children, they might share the news with friends and relatives.

“Young children find it hard to keep the secret. People are most afraid of the community response… such as not letting their children play with others because of their HIV status. So parents would rather not tell their children. A lot of these children only know that they have an illness that they must take medication for, but they don’t know what is exactly wrong with them.”

Van Elsland said parents were also afraid of being labelled as “sleeping around”.

“Although people are better informed about HIV/Aids and most families are affected by it in some way, the stigma is still high.”

But Van Elsland warned that such secrecy often resulted in problems as children started defaulting, especially once they became teenagers, as taking medication was also stigmatised by their school peers.

She said the research proved that telling children their HIV status positively affected quality of life for these children and their families.

“Future health policies should urgently focus on adherence and disclosure among children receiving antiretroviral treatment. A better understanding of the underlying reasons for non-disclosure is, however, required to improve adherence levels.”

[email protected]

Cape Argus

Related Topics: