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 Genetjournal_title
Clinical geneticsauthors
Smith JA,Brewer HM,Eatough V,Stanley CA,Glendinning NW,Quarrell OWdoi
10.1111/j.1399-0004.2006.00624.xsubject
Has Abstractpub_date
2006-06-01 00:00:00pages
486-96issue
6eissn
0009-9163issn
1399-0004pii
CGE624journal_volume
69pub_type
杂志文章abstract::Atypical or variant forms of well-known chondrodysplasias may pose diagnostic problems. We report on a girl with clinical features suggesting diastrophic dysplasia but with unusual radiographic features including severe platyspondyly, wide metaphyses, and fibular overgrowth, which are partially reminiscent of metatrop...
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pub_type: 杂志文章
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更新日期:1981-08-01 00:00:00
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journal_title:Clinical genetics
pub_type: 杂志文章
doi:10.1111/j.1399-0004.1981.tb00678.x
更新日期:1981-02-01 00:00:00
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journal_title:Clinical genetics
pub_type: 杂志文章
doi:10.1111/j.1399-0004.2005.00413.x
更新日期:2005-05-01 00:00:00
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journal_title:Clinical genetics
pub_type: 杂志文章
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更新日期:1993-02-01 00:00:00
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journal_title:Clinical genetics
pub_type: 杂志文章
doi:10.1111/j.1399-0004.1977.tb01341.x
更新日期:1977-06-01 00:00:00
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journal_title:Clinical genetics
pub_type: 杂志文章
doi:
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pub_type: 杂志文章
doi:10.1111/cge.13217
更新日期:2018-05-01 00:00:00
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journal_title:Clinical genetics
pub_type: 信件
doi:10.1111/cge.13820
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pub_type: 杂志文章
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journal_title:Clinical genetics
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journal_title:Clinical genetics
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journal_title:Clinical genetics
pub_type: 杂志文章
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更新日期:2004-11-01 00:00:00
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journal_title:Clinical genetics
pub_type: 杂志文章
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journal_title:Clinical genetics
pub_type: 杂志文章
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journal_title:Clinical genetics
pub_type: 杂志文章
doi:10.1111/j.1399-0004.1997.tb02554.x
更新日期:1997-10-01 00:00:00