title: The personal experience of juvenile Huntington's disease: an interpretative phenomenological analysis of parents' accounts of the primary features of a rare genetic condition.
abstract: There has been a paucity of research into the psychosocial impact of juvenile Huntington's disease (JHD) on the child and the family. The study reported here is part of larger project that aimed to address this and investigate the social and health care needs of those affected by JHD. Ten semistructured interviews with the main caregiver(s) were carried out and were analyzed using the qualitative methodology interpretative phenomenological analysis. The main themes arising from the analysis are reported here: first becoming aware something is wrong; physical symptoms; speech and communication difficulties; behavioral problems; a slow but relentless process. These are discussed in relation to extant literature. We hope the article will be helpful to clinicians working with families where a child is affected by JHD and also contribute to the general literature on understanding symptoms in childhood illness.
authors.affiliation: Birkbeck University of London, UK. ja.smith@bbk.ac.uk
authors.forename: J A
authors.initials: JA
authors.lastname: Smith
authors.forename: H M
authors.initials: HM
authors.lastname: Brewer
authors.forename: V
authors.initials: V
authors.lastname: Eatough
authors.forename: C A
authors.initials: CA
authors.lastname: Stanley
authors.forename: N W
authors.initials: NW
authors.lastname: Glendinning
authors.forename: O W J
authors.initials: OW
authors.lastname: Quarrell
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers; D002648:Child; D005260:Female; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000235:genetics* / Q000503:physiopathology / Q000523:psychology; D008297:Male; D010287:Parent-Child Relations; D010290:Parents