{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T11:32:45Z","timestamp":1790767965255,"version":"4.1.0"},"reference-count":33,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2008,1,1]],"date-time":"2008-01-01T00:00:00Z","timestamp":1199145600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Health Psychol"],"published-print":{"date-parts":[[2008,1]]},"abstract":"<jats:p>There has been little research into the impact of Juvenile Huntington's Disease (JHD) on the family, and the issues facing this group are poorly understood. The study reported here is part of larger project that aimed to address this. Ten semi-structured interviews with the main carer were carried out, and were analysed using Interpretative Phenomenological Analysis (IPA). This article reports three themes arising from the study relating to the psychosocial impact of JHD on the family: (1) dealing with something so different; (2) lack of understanding (3) isolation. This information is useful in developing appropriate services for families affected by JHD, as well as being of relevance to other childhood conditions.<\/jats:p>","DOI":"10.1177\/1359105307084307","type":"journal-article","created":{"date-parts":[[2007,12,17]],"date-time":"2007-12-17T08:02:47Z","timestamp":1197878567000},"page":"5-16","source":"Crossref","is-referenced-by-count":34,"title":["The Impact of Juvenile Huntington's Disease on the Family"],"prefix":"10.1177","volume":"13","author":[{"given":"Helen M.","family":"Brewer","sequence":"first","affiliation":[{"name":"Huntington's Disease Association & Birkbeck College, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Virginia","family":"Eatough","sequence":"additional","affiliation":[{"name":"Birkbeck College, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan A.","family":"Smith","sequence":"additional","affiliation":[{"name":"Birkbeck College, UK,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cath A.","family":"Stanley","sequence":"additional","affiliation":[{"name":"Huntington's Disease Association, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Neil W.","family":"Glendinning","sequence":"additional","affiliation":[{"name":"Huntington's Disease Association, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oliver W.J.","family":"Quarrell","sequence":"additional","affiliation":[{"name":"Huntington's Disease Association & North Trent Clinical Genetics Service, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2008,1,1]]},"reference":[{"key":"atypb1","doi-asserted-by":"publisher","DOI":"10.1097\/01376517-200512000-00007"},{"key":"atypb2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0404.1980.tb03041.x"},{"key":"atypb3","doi-asserted-by":"publisher","DOI":"10.1177\/1367493507073060"},{"key":"atypb4","unstructured":"Bruyn, G.W. (1968). Huntington's chorea: Historical, clinical and lab synopsis. In P. J. Vincken & G. W. Bruyn (Eds.), Diseases in the basal ganglia: Handbook of clinical neurology (pp. 298\u2014378). Amsterdam: North Holland Publishing Company."},{"key":"atypb5","volume-title":"The changing family life cycle: A framework for family therapy","author":"Carter, B.","year":"1989","edition":"2"},{"key":"atypb6","unstructured":"Cohen, D.J., Ort, S.I., Leckman, J.F., Riddle, M.A. & Hardin, M.T. (1988). Family functioning and Tourette's Syndrome. In D. J. Cohen, R. D. Bruun, & J. F. Leckman (Eds.), Tourette's Syndrome & tic disorders: Clinical understanding and treatment (pp. 179\u2014196). New York, Chichester, Brisbane, Toronto , & Singapore: John Wiley & Sons."},{"key":"atypb7","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/22.2.149"},{"key":"atypb8","volume-title":"Chronic childhood disease: An introduction to psychological theory and research","author":"Eiser, C.","year":"1990"},{"key":"atypb9","volume-title":"Growing up with a chronic disease: The impact on children and their families","author":"Eiser, C.","year":"1993"},{"key":"atypb10","doi-asserted-by":"publisher","DOI":"10.1515\/9781503620766"},{"key":"atypb11","first-page":"3","volume":"31","author":"Gortmaker, S.L.","year":"1984","journal-title":"America"},{"key":"atypb12","unstructured":"Hanson, C.L. (2001). Quality of life in families of youths with chronic conditions. In H. M. Koot & J. L. Wallander (Eds.), Quality of life in child and adolescent illness: Concepts, methods and findings (pp. 181\u2014212). East Sussex, UK: Brunner-Routledge."},{"key":"atypb13","unstructured":"Harper, P.S. (2002). The epidemiology of Huntington's Disease. In G. Bates, P. Harper, & L. Jones (Eds.), Huntington's Disease (3rd edition): Oxford monographs on medical genetics (pp. 159\u2014197). Oxford: Oxford University Press."},{"key":"atypb14","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-4471-1308-9"},{"key":"atypb15","doi-asserted-by":"publisher","DOI":"10.1097\/00004703-199602000-00008"},{"key":"atypb16","unstructured":"Kremer, B. (2002). Clinical neurology of Huntington's Disease: Diversity in unity, unity in diversity. In G. Bates , P. Harper, & L. Jones (Eds.), Huntington's Disease (3rd edition): Oxford monographs on medical genetics (pp. 28\u201461). Oxford: Oxford University Press."},{"key":"atypb17","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/25.3.147"},{"key":"atypb18","volume-title":"Stress, appraisal, and coping","author":"Lazarus, R.S.","year":"1984"},{"key":"atypb19","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.52.2.392"},{"key":"atypb20","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.49.4.1048"},{"key":"atypb21","volume-title":"Family matters: Interfaces between child and adult mental health","author":"Reder, P.","year":"2000"},{"key":"atypb22","unstructured":"Rolland, J. (1989). Chronic illness and the family life cycle. In B. Carter & M. McGoldrick (Eds.), The changing family life cycle: A framework for family therapy (2nd edn, pp. 433\u2014454). Boston, MA, London, Sydney, & Toronto: Allyn & Bacon."},{"key":"atypb23","volume-title":"Families, illness and disability: An integrative treatment model","author":"Rolland, J.S.","year":"1994"},{"key":"atypb24","unstructured":"Schuman, W.B. & La Greca, A.M. (1999). Social correlates of chronic illness. In R. T. Brown (Ed.), Cognitive aspects of chronic illness in children (pp. 289\u2014311). New York: Guilford Press."},{"key":"atypb25","volume-title":"Ordinary families, special children: A systems approach to childhood disability","author":"Seligman, M.","year":"1997","edition":"2"},{"key":"atypb26","first-page":"39","volume":"1","author":"Smith, J.A.","year":"2004","journal-title":"Psychology"},{"key":"atypb27","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2006.00624.x"},{"key":"atypb28","unstructured":"Smith, J.A. & Osborn, M. (2003). Interpretative Phenomenological Analysis. In J. A. Smith (Ed.), Qualitative psychology (pp. 51\u201480). 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