One of the hardest things for HIV-positive parents to do, is to tell their HIV-positive children that they are infected. The burden is also great for caregivers of HIV-positive children who may include grandparents, uncles/aunts, and siblings because in addition to telling the child he or she is HIV-positive, they may also have to disclose that his or her parent(s) died from the illness.
The fear of HIV disclosure causes parents and caregivers to postpone disclosure to HIV-positive children for long periods of time. This postponement is harmful to HIV-positive children because as they grow older, they start to put two and two together about why they are always taking pills, getting sick, and attending regular clinic visits. HIV awareness educational programs are taught in children’s schools and also shown on TV, especially in countries and communities with high HIV prevalence. It is therefore possible for HIV-positive children to see the medication they are taking (i.e., same pill bottle) displayed in an HIV program they are watching. These HIV-positive children then connect the dots and start asking their parents or caregivers questions in a bid to be disclosed to. Switching the pills to an unmarked medicine container, or taking the labels off the antiretrovrial medicine bottle buys a parent time, but eventually will not prevent HIV disclosure from occurring at some point in the future.
Please watch this short video of a scenario where a caregiver is postponing disclosure in order to avoid hurting a HIV-positive child:
Once a HIV-positive child is at this stage of asking questions about his or her illness, and why he or she is taking medications, disclosure cannot and should not be delayed because the questions will just increase in frequency and become more sensitive in nature thereby making a parent or caregiver very uncomfortable and stressed. The HIV-positive child might also start to become depressed or be disrespectful to their parents or caregivers.
It is also quite possible for HIV-positive children to become aware of their illnesses by overhearing conversations between their parents, relatives, and healthcare professionals. Before disclosure has occurred, please beware of the whereabouts of your child when speaking about his or her illness to others. HIV-positive children can also accidentally be disclosed to if the clinic they attend has HIV-related materials lying around, or the building has a HIV/AIDS associated name or sign.
As much as parents or caregivers may strongly desire not to disclose to a HIV-positive child to avoid hurting him or her, at some point the child needs to know of his or her illness. As you can see from the video, Luyanda has already guessed that he is HIV-positive, and his questions directed at his grandmother are begging for HIV disclosure. If she does not tell him, he might try to dig around and find out for himself. If a HIV-positive child seeks the information for him or herself, a parent or caregiver has no control on how he or she learns of his or her illness and the disclosure may occur in a non-supportive manner. This might be more harmful to the child than the parent or caregiver delaying disclosure and and it might also further erode the trust a HIV-positive child has in his or her parents or caregivers.
As HIV-positive children grow older, their parents and caregivers should watch them closely in order to determine when to disclose to them. For sure there is not an “ideal”, “set time”, or “set age” when disclosure should be performed to HIV-positive children. However, it becomes inevitable when a child is asking a lot of questions about his or her illness, and the reason why they are taking daily medications and attending clinic visits. Seeking the advice of healthcare professionals at this point will help parents and caregivers find the best way to approach disclosure to a HIV-positive child.
In the absence of questions, the age of 10 years was advocated as an ideal age to disclose to an HIV-positive child by participants in my study because as this age the child is able to understand the information. Participants also felt that disclosure should not be postponed beyond 14 years of age because by this age, children are mature enough to be told about the illness and they may already be sexually active (sorry parents and caregivers, children are starting to have sex at earlier and earlier ages!). HIV-positive children need to know about their illnesses so that they do not infect others should they have sex. One parent mentioned that she would definitely disclose to her daughter when she started her period because she felt at this time point, the daughter would be mature enough to know of her illness.
Disclosure to an HIV-positive child is a very difficult thing for a parent or caregiver to do because it leads to revelations of many family secrets about how the illness came into the family and was passed onto the child, as well as who may have died from the illness. The guilt associated with infecting a child causes many parents great stress and hurt and some may never be able to disclose. In such situations where a parent or caregiver feels completely incapable of disclosing to a HIV-positive child, I advocate for the child to be taken for counseling by a healthcare professional he or she is familiar with. Following counseling, this healthcare professional can disclose to the child. I strongly advocate for the parent or caregiver to be present at the time of disclosure so that they can answer any questions the child has while being supported by the healthcare professional, just in case some questions are difficult for them to answer.
Take heart, disclosure is difficult but doable! Once done and done well, parents, caregivers, HIV-positive children, and even healthcare professionals experience great relief when it is over. The parent/caregiver is relieved off the burden of keeping the illness a secret, the child is appreciative of finally knowing what he or she is suffering from, and the healthcare professional is now able to freely provide age-appropriate information about the illness to the child.
HIV disclosure can turn out to be a very positive experience that brings parents, caregivers, HIV-positive children, and healthcare professionals closer together thereby leading to better healthcare for HIV-positive children. When disclosure is done in a supportive manner, HIV-positive children are accepting of it, they recover faster, and they grow closer to their parents or caregivers. The ultimate goal is for the HIV-positive child to be fully aware of his or her illness, and take charge of taking care of themselves. You know what? Once HIV-positive children know of their illnesses, they become more responsible and independent about taking their medications and they take great care of themselves!
Please read my published articles on HIV disclosure located on the blog and my other posts on HIV disclosure located here on the blog. Please follow me on my social media platforms below: