The impact of Juvenile Huntington's Disease on the family: the case of a rare childhood condition.
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.
Brewer
Helen M
HM
Birkbeck College, UK.
Eatough
Virginia
V
Smith
Jonathan A
JA
Stanley
Cath A
CA
Glendinning
Neil W
NW
Quarrell
Oliver W J
OW
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