How do you disclose the status of an HIV-positive family member?

Nov 28, 2011

Fear, anger and despair became part of Rose’s life when she discovered that her mother was HIV-positive. “I was 17 when she told me and my brother. We did not know what to say.” Rose was confused by this revelation. “I had so many questions, but did not know where to start.

As the world marks HIV/AIDS Day on Thursday this week, Health&Beauty looks at the issue of disclosure of HIV status to the family. Doreen Murungi and Stephen Senkaaba let you know how to go about disclosure
 
Fear, anger and despair became part of Rose’s life when she discovered that her mother was HIV-positive. “I was 17 when she told me and my brother. We did not know what to say.” Rose was confused by this revelation. “I had so many questions, but did not know where to start. I feared that my mother would die and leave us helpless.” 
 
In another family, when Mary paid much attention to her HIV-positive child, the rest of her children, who did not know about their brother’s HIV status, called it favouritism. Soon they started resenting him. “They asked me why I was treating him in a special way.”
 
It was a particularly difficult moment for the mother of three who was too afraid to tell her other children that their brother needed care because of his HIV status.
 
Disclosure
Disclosure of one’s HIV status in such circumstances is a difficult aspect to negotiate. Many parents, fearing the negative effects it could have on their children, sometimes choose to keep quiet about it. 
 
Many times, they are confronted with questions such as: How do I break the news to the child, is he old enough to take it, how will they receive it; what if it devastates them, how do we cope in such circumstances? 
 
According to experts, all these questions can be addressed if the parents handle the situation with tact. “Keeping the news away from the child does not help,” says Dr. Stephen Watiti, an HIV activist and senior medical officer at Mildmay Uganda. 
He says instead of fearing how the news will affect the child (and using it as an excuse to keep quiet), parents should think more about how to minimise the impact.
 
Setting the stage 
Jacinta Magero, a trainer with the National Community of Women Living with AIDS (NACWOLA), says revealing news to a child about HIV is a gradual process which starts with preparing them for the news.
 
Tests first need to be done to establish their status, and this can be done from as early as six weeks through early infant diagnosis or 18 months through normal testing. Once their status has been established, they can be engaged.
 
“To engage children about HIV issues, parents need to establish a relationship with their children; such a relationship should be based on trust and mutual respect. Be a friend to your child, talk to them in an honest yet open manner, seek their views, listen to them and let them express themselves.”
 
Such a relationship, she says, will lay the ground for talking about a tricky subject.
Once a good relationship is established, parents need to be tactical in talking to their children. Children need to be told about their health background, about how they may have acquired HIV or how their parents may have acquired the disease. “Do not start them on a sad note,” says Magero. “Tell them in a friendly way, in positive terms.”
 
Positive message
It is important that parents portray a positive message to their children, to show them that even though they might be HIV-positive, they are still able to look after themselves and look after the family as well. 
 
If it is the child that has HIV, let them know that their sickness can be managed. The same message needs to be passed on to the child’s siblings who might be wondering why one of their own is being treated differently.
 
Such communication will send a positive message that having HIV is not a death sentence. It boosts their confidence and enables them to lead a normal life.
 
Age
A child’s age is an important factor to consider before discussing issues concerning their own or their parents’ HIV status. 
Watiti says such information should be disclosed to children when they most need it.
 
Magero, however, advises that children should be told as soon as they start asking questions on why, for instance, they are taking certain drugs. “Sometimes, these questions start at nine years, sometimes they come much later.” Whenever they come up, parents need to address them without sounding ambiguous.” 
 
This process, she says, should be done carefully, day by day, over a couple of days to enable a child to take in the news.
David Kavuma, a counselling psychologist with Mildmay Uganda, says guidelines exist about the disclosure of a chronic illness to a child. What if a child says he or she does not want the status revealed?
 
“The child has a right to privacy and their opinion must be respected but that does not mean we should stop encouraging the child; go step by step to avoid stressing the child,” advises Kavuma.
 
Parents’ preparation 
Parents too have to be emotionally and psychologically prepared to break the news. To be able to pass on the right message, parents need to be strong. “If, as a parent, you live in fear that you will die soon, you will discourage your children,” says Watiti.
 
“Parents need first

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