When first discussing HD with a child, it is important to tailor the discussion appropriately to age level. If there is more than one child in the family, it may be important to speak to each of them separately, giving more details to those who are older. However, it is a good idea to begin the basic discussion with the entire family present to establish trust and make sure that nobody feels left out. While the first conversation about HD is often the most stressful for the parent, it is important to keep in mind that it is the first discussion of many. The topic will need to be revisited periodically to make sure that children have the most updated information, to give them the opportunity to ask questions, and to make sure they are coping in a healthy way.
When talking about HD, it is necessary to keep in mind the developmental level of the child and to gauge how much to say about HD by disclosing information gradually. HD is a complicated illness and abstract thinking does not develop until adolescence. Before then, complex discussions about this condition will only confuse the child.
When having this discussion, parents need to offer children reassurance and leave them with a sense of hope. In addition to worrying a lot about the parent with HD, children will often be concerned about what will happen when the parent's symptoms get worse. It is important to assure children that no matter what, there will always be someone to care for them. It is also important to leave children with a sense of hope. Parents need to emphasize that doctors and researchers are working hard every day to improve therapies and to find a cure for HD.
Last Modified: 05/22/2009
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