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When should you tell a child about their HIV status?
According to a 2011 World Health Organization Organization (WHO) report on disclosure to children up to the age of 12, health care workers are challenged by a fact that there are no evidence-based policies and guidelines on when, how and under what conditions children should be informed about their HIV status.

Issues surrounding disclosure of people’s HIV status have always been complex because of stigma, social concerns, personal reputation and of course the fear of being misunderstood.

The issue though becomes more complex when a child is involved since they are never expected to have the emotional ability to handle such news, yet as they continue growing and interacting with other children, they need to be told so as not to be a danger to both themselves and the friends they are likely to play with.

 

Esther Kangave, Baylor Uganda senior counsellor, says the status of a child must be revealed before or when the said child is ten years old.“At that time a child must be aware of why he/she comes to the hospital and why they take medicine unlike the other children,” she says adding that the disclosure must be done by the parents.Since parents have a direct connection with their children, they become the best people to help them understand what they have.

 

In 2014, UNAIDS the United Nation's Agency on AIDS committed to ambitious testing and treatment strategy, which aims to have 90% of all people living with HIV knowing their status, on antiretroviral therapy and with a viral suppression by 2020 - of course with such an arrangement, adults with infected children should at least have made their young ones aware of what they have.

In 2006, Nantege Rebecca found herself in an exact situation - having to disclose to her sickly daughter that what she had wasn’t on and off malaria but HIV - much as many parents usually get the counselling and preparation on how to tackle the situation, she didn’t get much of it.

She had years before lost her husband but since she felt healthy, she never found out what took his life or that of their last born daughter and in 2006, from her oldest daughter’s test results she too learnt that she was living with HIV.

 

With a burden of confronting all this at once; “I can say prayer gave me the courage because I didn’t know what to tell my daughter.”Because her health was always a scare, Priscillar Namubiru, Nantege’s daughter started medication as soon.“She was hurt but she seemed to accept it easily,” Nantege says.

 

“At that time I didn’t take it hard because I was almost coming from the grave,” Namubiru says referring to her sickness before finding out, apparently, she had been pronounced dead even at the school she went to that knowing that what she had was HIV, was a relief since she knew medication could keep her alive.

 

The two were easily enrolled in the Baylor programme that easily helped them access professional counselling and interaction with people that had been in similar situations.Yet still, many times, Namubiru’s inner child at times got to her, Kangave says that naturally children can get irritated by the daily medication, especially in situations where their age-mates are not affected.

“When children get frustrated most of the times, they will end up asking questions like why me?” Kangave says adding that it is for this reason that they need to interact with other kids that are like them so they learn that they are not alone.

 

At the times though, the frustration may come from the surroundings, for instance in schools, students generally have a tendency of poking fun at sickly colleagues, most of the times asking questions like why so and so takes lots of tablets to why they are in and out of the hospital.

“The stigma does exist but I didn’t face the negative side of it,” Namubiru says adding that she instead received pity both from students and teachers. But she indeed had an altercation with her mother; “she believed I didn’t do enough to protect her from getting infected because her younger sister is OK.”

 

Other young people living positively rarely get Namubiru’s kind of support, for instance, Kangave notes that children that are the only ones infected in the family face stigma straight from their homes.“These are cases where both parents are negative but the child is sick,” she says these children got the infection from trusted caretakers and relatives.

Namubiru, who is a peer leader at Baylor says that the stigma such children face is because none of those around them understands their position;

“progress with HIV has a lot to do with one’s state of mind if no one is telling a child that regardless of what is in their blood they can still become a pilot, they will never believe it,” she says.

 

Uganda’s health sector has in the past been faced with issues surrounding labour inadequacy and this has directly affected HTC.For instance, besides organisation like Baylor that have almost enough resources to hire close to enough counsellors, children in rural centres and living with HIV don’t experience such luxuries of being talked to;

“Some of them get to learn about their status through rumours in the communities,” Kangave says.

 

According to a 2011 World Health Organization Organization (WHO)  report on disclosure to children up to the age of 12, health care workers are challenged by a fact that there are no evidence-based policies and guidelines on when, how and under what conditions children should be informed about their HIV status.

“Consequently, many health workers around the world are uncertain how to counsel clients about the disclosure process, thus, they may often miss opportunities to assist parents in dealing with these issues and explaining  to parents the need for HIV testing and counselling for all their children,” notes part of the report adding that the lack of proper disclosure may affect the well being of the child and their adherence to treatment.

 

The Uganda HIV Counselling and Testing (HCT) policy 2010 talks about disclosure to children but doesn’t delve into the how-to part, especially when it comes to minors - for instance it lays out the fact that above 12 years of age, a child can consent to their own HCT and the fact that at 10 years, after assessment and consent of the parents, disclosure should be done.

In Kangave’s experience, the lack of a known procedure has continuously left many children in the dark regardless of the fact that they are on medication; “we try to prepare parents but there still many times when they tell children that what they have is sickle cells.”

A UNAIDS country fact sheet 2016  notes that over 1.4m Ugandans are living with HIV, 130,000 of these are children aged 0-14 years of age and only 63,900 (47%) of these children are receiving ART.

 

If the report is anything to go by, then 53% of children are not receiving ART, and may not even know their HIV status.

Because we lack a convincing policy or guidance towards when or how disclosure to minors should be done, and the fact that sex talk remains a taboo on local dining tables, many minors are still living in the dark about their status both at home and school where teachers too are ill-trained to handle HIV matters.

At some of the schools we visited, administrators seemed clueless of the fact that at one point, they could have an HIV+ student in their midst and therefore didn’t have a plan on how they would handle them - and in that case, neither did the students.

 

By ANDREW KAGGWA

Twitter @mayigandre