It is well known that can be secrets in families about HD and parents may not tell, or may put off telling, their children about the illness (particularly its hereditary nature). One of the roles of our service is to provide support to parents in telling their children.

Support for parents in telling children:

Some parents come to us for advice on when, how, what and indeed whether to tell their children about HD. In general we advise that children and young people can be told about HD, particularly if they are living with an affected parent.We suggest that information is given gradually bit by bit at the child/YP's own pace, and to answer questions as truthfully/honestly as possible in an age appropriate manner (see our FAQs and different sections for children, teenagers and young adults). Having prepared answers or role playing what one might say can often be very helpful. We also stress that all families are different so how, and when, may be very dependent on the family and the individual child e.g. is it a family who talks about things over the dinner table together? Or does one parent (or on occasion grandparent) usually take the lead in talking about things?  Do some children need to be told more information than others (e.g. older siblings versus younger siblings)?

If you would like to read more about family communication issues and HD see:

Grey literature
i) Hennig B (2003) Talking to Kids About Huntington's Disease.
ii) Talking to children about Huntington's disease, Fact Sheet
4 (available from HDA)
iii) Tyler, A. (1990) Helping the children to cope. Combat, 37, pp. 16-20
iv) Liebeck, T. How children cope with having a parent with Huntington's
disease. HOPE: Newsletter of the HD Association of Ireland.

Academic papers
i) Skirton, H. (1998) Telling the children. In: Clarke A (ed) The Genetic
Testing of Children. Oxford: BIOS Scientific Publishers, pp. 103-111.
ii) Forrest K, Simpson SA, Wilson BJ et al. (2003) Barriers and facilitators
in family communication about genetic risk. Clinical Genetics, 64: 317-326.
iii) Forrest Keenan K, Simpson SA, Wilson BJ, van Teijlingen ER, McKee L,
Haites N, Matthews E. 'It's their blood not mine': Who's responsible for
(not) telling relatives about genetic risk? Health, Risk and Society 2005;
7(3): 209-226.
iv) Hold, K. What do we tell the children? Contrasting the disclosure choices
of two HD families regarding risk status and predictive genetic testing. J
Gen Counsel 2006, 15:4:253-265.

v) Cox S "It's not a secret but ..." Predictive testing and patterns of communication about genetic information in families at risk for Huntington's disease. Unpublished PhD Thesis, University of British Columbia, Canada, 1999