Stigma and discrimination

Many HIV-positive parents worry about telling their child about their status because of stigma and discrimination. The parent may fear rejection from their child because of negative messages the child may have received about HIV. If the child doesn't reject them, parents may feel the child will view them as having done something bad or wrong.

Because of the widely held view that 'HIV equals AIDS equals death', parents may worry that in telling their child, the child may assume their parent will die soon or is dying. Parents often feel unable to cope with talking about the possibility of their own death, and death itself may be a taboo subject.

Secrets in the family

Confidentiality is often a major concern of parents who feel their child or children may not be able to keep their illness private. Parents often say that they are most concerned about the impact on their children of others learning of their HIV status, as the child may experience discrimination at school or become isolated from their friends. Parents also worry that the child will tell their siblings or relatives, who in turn may not yet have been told by the parent.

While some parents feel that their child would be able to keep their status confidential, they believe that such a burden on their children is unacceptable. It is difficult to know what impact keeping a secret such as this may have on a child or young person.

Children can be trusted with information about important things in their family life, such as drug use, child abuse, domestic violence, etc. In these situations, children and young people report various negative impacts, such as withdrawal from their friends, not inviting other children home, a feeling of difference from other children or generally having to cover up. Because of the stigma attached to HIV, the impact of telling an outsider about HIV in the family may be more detrimental than telling someone about other family matters.

Some parents decide not to tell their children until they are seriously ill, or may decide they never want to tell their children. Parents feel that telling a child will change that child's life forever, and they want the child to have 'as normal a life as possible' without having to worry constantly about their parent, or who will look after them. The child or young person could become burdened by the knowledge and may, for instance, start taking on more responsibility in the house or checking on the parent's movements and health.

Difficult questions

Discussing their status with the child or a young person may be too difficult for some parents because they don't know how to explain something as unclear as HIV. No–one can say exactly if they will get ill, or if they do, if and when they might die. Parents may not want this emotional uncertainty about the future to hover over their children.

Some parents feel that there may be a possibility of a cure, so they don't want to subject their children to the emotional trauma of being told about their parent having a life threatening illness today, when a cure could be found tomorrow.

If parents have explained the facts of HIV to their children, then the disclosure of a parent's own status to their child may leave that parent open to questioning by the child on how they became infected. Having to explain facts about their own lifestyle – for example taking drugs, being gay or bisexual may prove to be too difficult, and the parent may decide not to disclose their status in order to circumvent these questions.

How much harm can withholding information cause?

Research into children's reactions after they are told their parent has a life–threatening illness, such as cancer, has shown that it is usually better for the child to be told. However, some parents and professionals feel this to be of limited value in the context of HIV, as most other life–threatening illnesses do not carry the same stigma and discrimination.

The decision whether or not to disclose a parent's status is also influenced by the child's age and its family background. For example, very few parents would decide to tell a three–year old about HIV, but may consider telling an older child. If family or cultural norms mean that the child or young person is not involved in family matters, trying to bring a degree of openness about a complex issue such as HIV may prove to be difficult for parents.

Another reason why a parent may choose not to disclose their status may be their emotional state or that of their child or children. The parent may want to be emotionally calmer before disclosing their status in order to help the child or young person through their emotional response and reduce the possibilities of over–dramatising the situation.

In other circumstances, the child or young person may just be achieving a sense of stability which the parent may not want to disrupt; for example, if a child is coming to terms with the death of the father, the mother may not want to tell the child she also has a life–threatening illness. The child or young person may recently have been told about a parental separation or of a family secret such as parental drug use, leaving the child or young person emotionally unsettled. Being told about the parent's HIV status at this point would probably be detrimental.