As mentioned previously, the information parents give to a child about HD should be appropriate to the child's age. There will likely be individual differences in suitable information depending on the child's maturity level, but the following provides a general frame of reference for age-appropriate discussion.
When talking to preschoolers, children ages 2-5, parents should use language that their children understand and keep their explanations short. Children this age may begin to show signs of anxiety, so it is often helpful for parents to let them know the ways in which they are keeping their daily routines the same, in spite of having HD in the family. Routine can be very soothing, even for small children, and so emphasizing this creates comfort that their lives aren't changing too much all at once. This gives the children space to integrate the new information they receive on HD and therefore to cope. For children in the older portion of this age range, it should be made clear that nothing they did caused HD. This is important because children around this age are prone to magical thinking, believing that they have the ability to make certain things happen, simply by wishing for either good or bad things. If a child does not understand why the parent has HD, the child may attribute the symptoms to his or her wish, resulting in a profound sense of guilt.
School age children, children ages 6-11, are generally capable of understanding a basic explanation of the disease. It often helps to give the child the name of the disease and to point out that you cannot catch it by hugging or sharing food with the individual who has it. It is also a good idea to give the child an overview of what doctors are doing to control the symptoms of HD even though there is, as of yet, no cure. It is important for parents to realize that children in this age range can become overly concerned with health and that it is possible that if they are given too much information, they may worry about HD well before the onset of specific symptoms.
Teenagers are generally very capable of understanding a lot about HD. Because of this, parents should be open and willing to give as much detailed information as the teen needs to understand the illness. Most agree that at this point, parents should answer all questions, including ones about transmission, as fully and as honestly as possible. However, this stage of life is often difficult because of the many physical and psychological changes that emerge as part of adolescence. This is a time when individuals formulate and strengthen their self-identities and establish important peer and other relationships. Often teens are prone to mood swings, anxiety and depression and may become angry or withdrawn when HD is discussed. If this is the case, it is important for the parent not to force the teen to talk about HD, but to make himself or herself available when and if the adolescent should decide to talk about the condition. At this point, it is also helpful to have an open discussion about stigma associated with HD and how people are often afraid of behavior that seems different or that they don't understand.
Last Modified: 05/22/2009
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