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.
Huntington's and Me: a Guide for Young People by Alison Gray, a book for children that encourages conversation
- A. Frohnmayer, 5/22/09
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.
Last Modified: 05/22/2009
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