| KAMPALA
Informing others about your HIV status is called disclosure. You can disclose your own status or that of someone with or without their consent to do so.
Disclosure can occur in a variety of contexts - at home to close relations (parents, children, lovers, spouses), at work to the employer or to workmates, to healthcare providers or to the public through the media.
Disclosure can be challenging for parents trying to disclose their HIV status to their children. If children are HIV infected, for example, should their HIV status be disclosed to them?
If yes, how and when in their development stage should they be told? These are always difficult issues but they can be made more or less complicated depending on parent communication style and the extent of parental or child illness.
There are many reasons why a parent might refuse to disclose their own HIV status and why they often find it even more difficult to disclose their children's HIV
status.
Although many parents living with HIV feel the need to disclose their own HIV status to their children, the majority will not. Some parents feel they would be more comfortable disclosing their status to older children but even then they do not always know how to do it.
HIV/Aids has an insurmountable impact on children right from the time the parents are diagnosed HIV positive to the point when they are unwell. This is especially true for older children who may have to drop out of school due to lack of school fees, do chores or take care of younger siblings or their sick parent.
Perhaps the strongest argument in favour of parental disclosure is that many older children view it positively and actually can be a great comfort to their sick parents.
It also prepares them psychologically for any eventualities, and most orphans to whom disclosure had not been made say they would have felt better if their parents had told them the truth.
I have
found
that parents better adhere to medication when they disclose to their children - the stigma associated with having to take medication daily is removed. Furthermore, many children act as treatment supporters (someone who encourages and motivates another to take regular medication) for a sick parent.
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HELPS FIGHT AIDS: Madra |
Fear of disclosure limits parents' ability to take steps in appointing guardians and make decisions about the security of their children's future, potentially leaving the children in the hands of caretakers many of whom may not have good intentions.
Further to this, most surviving guardians/parents are female, making it important to increase community awareness about the property rights of women and children.
This would mean enforcing property rights, which may require enacting or strengthening related laws, whether at national, religious or cultural level. Although not traditional in Africa, the writing of wills is a habit that we should also encourage.
As for the disclosure of their status to children themselves, it is a difficult task for parents. The effect on the child's development of the disclosure of a potentially stigmatising illness should be considered, as well as how the family's community may react.
Clinical practice
In my clinical practice I have encountered children that I have known to be HIV positive from childhood, having acquired the infection from their mothers, but who have now reached puberty not knowing their HIV status.
This is not due to the parents being unaware but because, even with constant counselling and advice, they do not understand the need to disclose to their children.
In explaining why they do not tell their children a common excuse from parents is that "children can't keep a secret."
This stated need for secrecy is more pronounced in women. Other parents fear the questions that will follow and that their children will be stigmatised or discriminated against by their fellow students and even school authorities.
Unfortunately many of these children later get into risky sexual relationships, with all the associated problems of infecting their sexual partners or being re-infected by other HIV positiv
e
persons.
And so many parents simply put off the issue until the children begin to ask questions. The school curriculum now incorporates HIV/Aids and there are many prevention programmes targeting school children, all with the direct result that awareness is high amongst this group.
At home they begin to ask about illnesses or symptoms that they rightly associate with HIV/Aids, about the frequent hospital visits or admissions, they query the never-ending pills they have to take and question why they have to have regular blood check ups.
Unique
Every child is unique - some may accept disclosure easily while others could go to the opposite extreme of suicidal tendencies. Acceptance could take years so the earlier you start the better the results. There are other benefits - for example a child having to take antiretrovirals is more likely to comply if they understand why they need to take them.
By and large such children require constant follow-up, parental support and guidance. But then these children grow up into adults who use the knowledge of their HIV status to guide them on how to live healthy positive lives.
In short, talking about prevention (which ideally should start at the family level) and taking time to plan for your children's future are important issues that no responsible parent can run away from. Fortunately in dealing with HIV/Aids we are developing strategies that encompass the whole family approach, which should make disclosure within the family context
not
necessarily easy or imperative but, at least, a less painful process.
Dr Stella Alamo-Talisuna MBChB, MDC is a fellow with the IPH/CDC/HIV/Aids Fellowship Programme | 
