The personal experience of juvenile Huntington's disease: an interpretative phenomenological analysis of parents' accounts of the primary features of a rare genetic condition

Smith, Jonathan A. and Brewer, H.M. and Eatough, Virginia and Stanley, C.A. and Glendinning, N.W. and Quarrell, O.W.J. (2006) The personal experience of juvenile Huntington's disease: an interpretative phenomenological analysis of parents' accounts of the primary features of a rare genetic condition. Clinical Genetics 69 (6), pp. 486-496. ISSN 0009-9163.

Full text not available from this repository.

Official URL: https://doi.org/10.1111/j.1399-0004.2006.00624.x

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.

Metadata

Item Type:	Article
School:	Birkbeck Faculties and Schools > Faculty of Science > School of Psychological Sciences
Depositing User:	Sarah Hall
Date Deposited:	25 Nov 2019 14:31
Last Modified:	02 Aug 2023 17:55
URI:	https://eprints.bbk.ac.uk/id/eprint/30053

Statistics

Archive Staff Only (login required)

Edit/View Item