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.

journal_name

Clin Genet

journal_title

Clinical genetics

authors

Smith JA,Brewer HM,Eatough V,Stanley CA,Glendinning NW,Quarrell OW

doi

10.1111/j.1399-0004.2006.00624.x

subject

Has Abstract

pub_date

2006-06-01 00:00:00

pages

486-96

issue

6

eissn

0009-9163

issn

1399-0004

pii

CGE624

journal_volume

69

pub_type

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