HIV disclosure from parent to child is a process and not a one-time event. I am regularly asked what the ideal age for disclosure to a child is? I am sorry to say that there isn’t an easy answer to this question and no one can definitively give a proper or perfect answer to the question. Parents cannot be expected to disclose to their children (HIV-positive or negative) immediately after diagnosis because they need time to accept their illnesses and prepare for disclosure; and children should not be placed under a hard and fast rule about which age they must be to receive full disclosure. Each parent moves through the HIV disclosure phases (read about them here) at a different pace until they reach a time when they are ready to fully disclose a parent’s and/or a child’s illness.
Parent’s Illness: Some parents are diagnosed when their children are too young for disclosure. As these parents prepare themselves for full disclosure; their children are growing older and also need to be carefully prepared themselves and moved along the children’s stages of HIV disclosure. Additionally, parents may also be diagnosed when their children are in the teenage years. In this instance, parents should carefully prepare these teenage children for disclosure because they are known to react more negatively/profoundly than their younger counterparts.
Child’s Illness: Children on the other hand, might also be diagnosed at an age when they are too young for disclosure and need to achieve understanding and maturity before they are fully disclosed to. Children who are long term non-progressors (illness progresses slowly) may be sick on and off for years before they are finally diagnosed in their teenage years. These children need careful preparation and counseling before they receive disclosure of their illnesses; therefore, disclosure should be postponed to a later date.
When considering disclosure to a child, each child should be treated as an individual and their readiness assessed individually as well. A child is judged ready for disclosure when they have been adequately prepared and deemed receptive to the news. As mentioned earlier, children also need to have understanding of the disease and be mature enough to receive full disclosure. Since children develop differently, those with developmental delays should receive additional counseling and preparation before full disclosure.
Children’s stages of HIV disclosure include:
A child is considered to have no disclosure when he or she is completely unaware that he, she, or the parent is HIV-positive. A child with partial disclosure is aware that he, she, or the parent has a chronic illness and is taking daily medications for it. A child with full disclosure is completely aware that he, she, or the parent is HIV-positive. Typically children between 0-4 years have no disclosure of illness, those between 5-9 years have partial disclosure, and those 10 years and above are capable of receiving full disclosure of illness. However, experience shows that although these are the recommended ages for children’s stages of HIV disclosure, full disclosure doesn’t occur as laid out here. Some children receive disclosure early and others may already be in their teenage years and not yet have received disclosure of theirs and/or their parents’ illnesses.
Parents: please look at the infographic (courtesy of Elizabeth Glaser Pediatric AIDS Foundation) below for conversation starters with your children to start taking them through the children’s stages of HIV disclosure :
Healthcare professionals: please regularly speak to parents during clinic visits on the need to disclose theirs and/or their HIV-positive children’s illnesses in a timely manner (preferably before a child becomes a teenager for those diagnosed early enough) using the children’s stages of HIV disclosure inforgraphics provided below. These infographics will help you facilitate HIV disclosure from HIV-positive parents to their HIV-positive and negative children:
1. Assessing children’s readiness for full disclosure (courtesy of Department of Pediatrics, Siriraj Hospital, Mahidol University, Thailand):
2. Factors to consider when making individualized full disclosure plans for parents and children (courtesy of Department of Pediatrics, Siriraj Hospital, Mahidol University, Thailand):
3. Strategies for disclosure based on a child’s age and developmental stage (courtesy of New York State Department of Health AIDS Institute):
Please find additional HIV disclosure resources (including the original documents where these infographics were obtained) in the parent’s help pageand healthcare professionals’ help pagein this blog. Please also visit and follow me on my other social medial pages below for additional HIV disclosure resources:
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