Talking to Children About Huntington’s Disease
Families choose to discuss Huntington’s disease with children in different ways according to their personal beliefs about how best to handle this information. This article does not intend to imply that there is one right way to speak with children about this very difficult subject. The following information is based on the experiences of social workers and the families with HD with whom they have worked. Hopefully it can provide a starting point for communication, and can be adapted to individual families and circumstances.
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Talking about HD is difficult because it is a complex diagnosis and it can have a profound and devastating impact on family dynamics. Parents often believe that HD is too complicated for an infant to understand, and too distressing for school age and adolescent children. In addition, the already challenging task of telling a child about his or her parent’s chronic illness is amplified in the case of HD, because the child is at risk of inheriting the disease. Caregivers fear that their child will someday develop symptoms of HD and want desperately to provide him or her with a normal childhood, free from the anxiety, sadness, and anger that living with HD entails. Moreover, some parents worry that by telling their child about HD, they will subject him or her to genetic discrimination, which could limit social relationships and opportunities. Despite all of these concerns, most families and social workers agree that establishing open and honest communication about HD from a young age, rather than avoiding this topic altogether, is less damaging and more beneficial for all members of the family.
While keeping quiet about HD in the family seems like a way to protect a child, it often does more harm than good. Even when the condition is not discussed, small children commonly pick up on the notion that parents are anxious and worried, and that something is wrong with the parent with HD. If the diagnosis is not at least explained in simple terms to the child, he or she might feel responsible for causing the strange behavior of the affected parent. In addition, a common symptom of HD is irritability. If a parent’s irritable behavior is not explained properly, a child may not understand that the parent’s anger is not directed at him. Inability to discuss HD can also eventually lead to poor preparation for future changes in the family as the symptoms of the parent with HD grow more severe.
Talking to a child about HD helps the child understand why his mom or dad is acting strangely and can make it easier for the whole family to cope with the diagnosis. Open communication creates a safe environment to discuss and ask questions about a very distressing illness, and it reduces individual feelings of isolation for the child as well as the stress of secrecy for the parents.
When do I tell my child about HD?^
Most social workers who work closely with families with HD believe that children should be told at any and every age. It is never too early and never too late to discuss HD with a child. Children are surprisingly resilient and often have a greater than expected capacity to cope with such disturbing news. Children who sense already that something is wrong with a parent may actually feel relieved to hear facts about HD because these are sometimes more hopeful than their fears. The information given to children about HD will clearly be more basic for those who are younger, but evidence based on adoptive studies indicates that the younger the child is when told about the diagnosis in the family, the easier it will be to cope in the long run. This is because the child will begin to integrate this information as part of his life so early that it will seem more normal and therefore less scary. It is helpful to know that the talk itself is often less stressful than the anticipation leading up to it.
How do I tell my child about HD?^
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.
There are some things to remember not to do when discussing HD with children. First and foremost, the parent should never lie. Lying takes a lot of energy and it can become complicated to lie about certain pieces of information for extended periods of time. A lie is difficult to remember and ever-changing explanations lead to disbelief and mistrust. Honesty fosters trust and a sense of security, both of which can enable open discussion and make coping with HD as a family much more manageable.
The scientific and medical information related to HD is complicated and will be too difficult for small children to understand. Therefore, when talking to young children, the parent must be conscious not to overburden them with too much medical information after explaining the diagnosis in basic terms. If the parent is trying to answer a child’s question, it is a good idea for him or her to ask if the child understands or has additional questions. If the child wants more information, then the parent should elaborate.
It is important for the parent not to make promises that cannot be kept, thus giving the child a sense of false hope that may someday be devastating to the child. For example, if the child has not been tested for HD, the parent cannot promise that the child will never develop symptoms of this disease. The parent should inform the child that such a test is possible and could be considered after age 18.
Parents should not be afraid to say that they don’t know the answer to a question. Not knowing may mean that the individual parent doesn’t have the answer to a question but can find somebody who does. It may also mean that nobody knows the answer to the question and this is also perfectly okay. For example, no one knows exactly when there will be a cure for HD. We all hope that it is soon, but no one knows at least for now and the child is not alone in waiting for an answer.
Talking about HD with specific age groups^
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.
Deciding when and how to talk to children about HD may involve significant mental preparation. The above can be considered as a starting place for parents who want ideas as to where to begin. One helpful idea is for the parent with HD to think about how HD was discussed when he or she was growing up and to consider whether or not it was an effective way to deal with the diagnosis and what, if anything, he or she might have changed. Drawing from personal experience might make it easier for the parent to communicate information about HD.
Social Workers Bonnie Hennig, author of Talking with Kids About HD, and Rick Henry of the HDSA Center of Excellence at University of California Davis Medical Center, were instrumental in the writing of this article. They are helpful contact persons for more detailed and personalized guidance.
Recommended Resources and Links for Children^
- Interactive HOPES:
- National Youth Alliance
- Huntington’s and Me: a Guide for Young People by Alison Gray, a book for children that encourages conversation
For Further Reading:^
- Hennig, Bonnie. Talking to Kids About HD. 2004.
This book provides information about how to discuss HD with children at different developmental stages. It is the basis for much of the information in this article.
- Keenen, K. et al. “Young people’s experiences of growing up in a family affected by Huntington’s disease.” Clinical Genetics 71 (2007): 120-129.
This article examines the experiences of young people in families affected by HD. It cites knowing about HD from an early age in particular as a factor in coping effectively with the illness in the family.
- Lefebvre, A. “Talking to children about HD in the family.” Horizon Newsletter. Winter, 1999. Online here.
This article discusses some ways of approaching HD with different age groups. It is short and easy to read.
- Lowit, A. and van Teijlingen, E.R. “Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington’s Disease patients.” BMC Family Practice 6 (2005). Online here.
This study involved interviews of ten carers of spouses with HD. Although the number of participants is small, the article discusses interesting insights into the psychosocial impact of not discussing HD within the family.
- A. Frohnmayer, 5/22/09