Abstract
Huntington's Disease (HD) is a genetically determined, terminal illness in which all offspring have a 50% chance of developing the disease. The purpose of this study was to determine the psychosocial needs of HD families and the interventions and resources that could help families cope with the disease. The participants were 67 families, of which 32 individuals were diagnosed as having HD and 87 individuals were at risk for HD. The results indicated that it was important to form systems of support among HD families and to develop a network of sympathetic, educated professionals for HD families. The results of the study directly precipitated the formation of an HD Support Group and the initiation of an HD Information and Referral service. The development of interfamily and professional support to complement the natural intrafamily support is one effective strategy for coping with a variety of the psychosocial needs of HD families.
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