{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,10]],"date-time":"2026-05-10T06:22:19Z","timestamp":1778394139719,"version":"3.51.4"},"reference-count":36,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2007,1,23]],"date-time":"2007-01-23T00:00:00Z","timestamp":1169510400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2007,2]]},"abstract":"<jats:p>Previous research and clinical experience suggest that Huntington\u2019s disease (HD) can considerably affect family life, particularly for young people (YP) at risk. The goal of this study was to describe the experiences of YP from families affected by HD. YP were identified through the regional genetics clinic and the Scottish Huntington\u2019s Association. In\u2010depth interviews were used to explore YP\u2019s experiences of finding out about HD in the family; perceptions of their own risk; caring activities; protective or risk factors; and the impact of HD on relationships with siblings, parents, extended family members, and the wider community. Thirty\u2010three YP between the ages of 9 and 28 years were interviewed. A qualitative thematic analysis was undertaken. The analysis revealed four main themes: YP as carers, the worried well, those who cope, and those at risk\/in need. These themes highlight the varied experience of growing up in a family affected by HD. Whilst some YP successfully coped, others experienced considerable problems and were at risk of physical and\/or emotional harm. In understanding why some cope better than others, our findings suggest protective and risk factors within these themes. In particular, participants who grew up knowing about HD from an early age seemed to cope better.<\/jats:p>","DOI":"10.1111\/j.1399-0004.2006.00702.x","type":"journal-article","created":{"date-parts":[[2007,1,23]],"date-time":"2007-01-23T15:06:31Z","timestamp":1169564791000},"page":"120-129","source":"Crossref","is-referenced-by-count":64,"title":["Young people\u2019s experiences of growing up in a family affected by Huntington\u2019s disease"],"prefix":"10.1111","volume":"71","author":[{"given":"K","family":"Forrest Keenan","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Z","family":"Miedzybrodzka","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"E","family":"Van Teijlingen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"L","family":"McKee","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"SA","family":"Simpson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2007,1,23]]},"reference":[{"key":"e_1_2_9_2_2","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.155.6.799"},{"key":"e_1_2_9_3_2","volume-title":"Annual report 2003\/4","author":"Scottish Huntington\u2019s Association","year":"2004"},{"key":"e_1_2_9_4_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2005.11.019"},{"key":"e_1_2_9_5_2","first-page":"581","article-title":"The effect of Huntington\u2019s chorea on family life","volume":"15","author":"Korer J","year":"1985","journal-title":"Br J Soc Work"},{"key":"e_1_2_9_6_2","doi-asserted-by":"publisher","DOI":"10.1017\/S0021932000014413"},{"key":"e_1_2_9_7_2","doi-asserted-by":"publisher","DOI":"10.1097\/01.GIM.0000170775.39092.44"},{"key":"e_1_2_9_8_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2005.00505.x"},{"key":"e_1_2_9_9_2","doi-asserted-by":"publisher","DOI":"10.1007\/BF01499023"},{"key":"e_1_2_9_10_2","volume-title":"Helping children with ill or disabled parents: a guide for parents and professionals","author":"Segal J","year":"1996"},{"key":"e_1_2_9_11_2","doi-asserted-by":"publisher","DOI":"10.1080\/01926187708250251"},{"key":"e_1_2_9_12_2","unstructured":"EastonJ.Self\u2010understanding and identity: the experience of adolescents at risk for HD. 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