title: The impact of Juvenile Huntington's Disease on the family: the case of a rare childhood condition.
abstract: There has been little research into the impact of Juvenile Huntington's Disease (JHD) on the family, and the issues facing this group are poorly understood. The study reported here is part of larger project that aimed to address this. Ten semi-structured interviews with the main carer were carried out, and were analysed using Interpretative Phenomenological Analysis (IPA). This article reports three themes arising from the study relating to the psychosocial impact of JHD on the family: (1) dealing with something so different; (2) lack of understanding (3) isolation. This information is useful in developing appropriate services for families affected by JHD, as well as being of relevance to other childhood conditions.
authors: Birkbeck College, UK.
authors: Helen M
authors: HM
authors: Brewer
authors: Virginia
authors: V
authors: Eatough
authors: Jonathan A
authors: JA
authors: Smith
authors: Cath A
authors: CA
authors: Stanley
authors: Neil W
authors: NW
authors: Glendinning
authors: Oliver W J
authors: OW
authors: Quarrell
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D006816:Huntington Disease / Q000451:nursing; D007407:Interviews as Topic; D012934:Social Isolation; D012944:Social Support