ABSTRACT
Huntington's Disease, a neuropsychiatric disorder with dominant inheritance and late manifestation is related to multiple psychosocial problems of the affected person, his life partner as well as their children (so-called individuals at risk). During a five years project the authors contacted 131 persons, directly and indirectly involved in problems with H.D. In the first part the authors present after a general survey sociodemographic and clinical data of the project.
Subject(s)
Adaptation, Psychological , Huntington Disease/psychology , Sick Role , Activities of Daily Living/psychology , Adult , Child , Cost of Illness , Female , Humans , Huntington Disease/epidemiology , Huntington Disease/genetics , Male , Middle Aged , Self-Help GroupsABSTRACT
The following article is informing about the experiences from a psychosocial project on Huntington's Disease (HD), a neuropsychiatric disorder with dominant inheritance. The project was running from July 1987 to October 1992 and was funded by the Robert-Bosch-Stiftung. During this project the authors contacted 78 involved families (131 persons), they offered psychotherapies, family-therapies, as well as meetings for patients and explored the subject by semi-structured interviews. The results of this project are presented in the following part.