Many research studies on HIV disclosure including mine (please read about them here) have shown time and again that parents are challenged with HIV disclosure of a parent’s and a child’s illness; and even more so when they need to disclose both a parent’s and a child’s illness to children in their families. Unfortunately, some families have many infected family members who may include both parent(s) and child(ren) thereby compounding disclosure for the parents even further. Some parents take years to accept their own diagnoses, test their children, and think about if, when, and how to disclose to their children.
While waiting to disclose, parents take their HIV-positive children to the clinic for care and tell them to take antiretroviral therapy (ART) because it will keep them healthy and/or cure them. Some parents tell their HIV-positive children to take the medications because they have a chronic illness. This illness (e.g., opportunistic infection such as pneumonia, tuberculosis) is usually what caused the child (who may have been sick on and off for years) to be tested and diagnosed HIV-positive. Therefore, the child has a keen objective to take the medications and feel better. However, a problem arises when the child is indeed cured from the opportunistic infection, and he or she starts resisting to take ART leading to non-adherence, possible drug resistance, and poorly controlled disease. Parents at this time have two options, perform HIV disclosure to the child or continue to lie about the illness necessitating ART consumption.
With continuing non-disclosure of a HIV-positive child’s illness, he or she starts to sense there is a major secret within his or her family that he or she is not privy too. The awareness of the secret causes the child continuing psychological stress to the point he or she thinks they are the cause of a major problem within the family. Please watch this touching video to see what goes in the life of a HIV-positive child without disclosure of illnesses and deaths within the family.
Parents and healthcare professionals need to be aware of the issues that may arise when there is persistent non-disclosure of illness and a HIV-positive child is becoming increasingly aware of secrets within the family. “Faith” featured in the video is 10 years old and has understanding of an important but highly secret issue going on in the family. She is clearly in need of HIV disclosure and at an appropriate age when she should be fully disclosed to.
Participants in my study thought that children were capable of understanding HIV by 10 years of age and mature enough to receive HIV disclosure by 14 years. Therefore, I advocate for children (both HIV-positive and negative) to receive full HIV disclosure of their own and/or their parents’ illnesses between 10-14 years of age. Preparation and teaching of the disease should start as early as possible but not later than 7 years so that by 10-14 years, the child is ready for full HIV disclosure. Parents should regularly speak to their healthcare providers about HIV disclosure. Healthcare providers can be assist parents to identify when their children are ready for full disclosure so it is delivered in a timely and appropriate manner.