Juvenile onset of Huntigton's disease : a case study

Abstract

Problem The purpose of this thesis was to examine in depth a case of Juvenile Huntington's disease in order to identify the feelings and experiences of the primary carer (mother). A family history of the boy was obtained which covered 15 years of his life. Perceptions of Huntington's disease and the problems faced by the carer were also identified, whilst recommendations for staff to deal effectively with carer's needs for early onset Huntington's disease were developed. Method A single case study method was used. The mother of the child with Juvenile Huntington's disease was interviewed and the boy's medical and psychiatric notes were reviewed. As a guide for the interview a schedule was constructed based on the published literature. Conclusion Study findings highlight that patients with Juvenile Huntington's disease should not be institutionalized in a psychiatric hospital; there is a need for more information regarding_ genetic testing and long term support over the years. Eight themes have been identified and these are discussed in detail. The study recommends the development of specialist care services for Huntington's disease and Juvenile Huntington's disease and the need for greater awareness amongst health care staff.