{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T13:21:52Z","timestamp":1791120112796,"version":"4.1.0"},"reference-count":28,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2013,11,18]],"date-time":"2013-11-18T00:00:00Z","timestamp":1384732800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/3.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Scandinavian Caring Sciences"],"published-print":{"date-parts":[[2014,12]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>The objective of this study was to explore family caregivers' experiences with the impact of <jats:styled-content style=\"fixed-case\">H<\/jats:styled-content>untington's disease (<jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>) on the family structure and roles in the family.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methodology<\/jats:title><jats:p>We interviewed 15 family caregivers in families affected by <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content>, based on a semi\u2010structured interview guide. The participants were recruited through hospital departments and a lay organisation for <jats:styled-content style=\"fixed-case\">HD<\/jats:styled-content> in <jats:styled-content style=\"fixed-case\">N<\/jats:styled-content>orway. Data from the interviews were analysed with systematic text condensation.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Huntington's disease could have a substantial impact on the family system, the shape of roles among family members and the hierarchical order between spouses, partners, and parents and children. The relationship between spouses and partners changed during the course of the disease. A reciprocal relationship was difficult to maintain, as the role as carer overshadowed other roles. Children of an affected parent could compensate for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to care for and support individuals in their role as family members and caregivers in different stages of the disease and family life cycle.<\/jats:p><\/jats:sec>","DOI":"10.1111\/scs.12098","type":"journal-article","created":{"date-parts":[[2013,11,18]],"date-time":"2013-11-18T10:29:11Z","timestamp":1384770551000},"page":"700-705","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":46,"title":["Caregiver roles in families affected by <scp>H<\/scp>untington's disease: a qualitative interview study"],"prefix":"10.1111","volume":"28","author":[{"given":"Merete","family":"R\u00f8thing","sequence":"first","affiliation":[{"name":"Research Network on Integrated Health Care in Western Norway Helse Fonna Local Health Authority Haugesund Norway"},{"name":"Department of Global Public Health and Primary Care University of Bergen Bergen Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kirsti","family":"Malterud","sequence":"additional","affiliation":[{"name":"Department of Global Public Health and Primary Care University of Bergen Bergen Norway"},{"name":"Research Unit for General Practice Uni Health Uni Research Bergen Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan C.","family":"Frich","sequence":"additional","affiliation":[{"name":"Institute of Health and Society University of Oslo Oslo Norway"},{"name":"Department of Neurology Oslo University Hospital Oslo Norway"},{"name":"Global Health Leadership Institute School of Public Health Yale University New Haven CT USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,11,18]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.c3109"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2008.17.5.28830"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1442-2018.2004.00183.x"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/1742395311403637"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2006.12.8.368"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2005.14.8.17929"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2011.05727.x"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.2307\/2092933"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2012.10.005"},{"key":"e_1_2_10_11_1","volume-title":"Nurses and Families: A Guide to Family Assessment and Intervention","author":"Wright LM","year":"2009"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951509000303"},{"key":"e_1_2_10_13_1","first-page":"2423","article-title":"Family Theory and Family Health Research: understanding the family health and illness cycle","volume":"37","author":"Doherty WJ","year":"1991","journal-title":"Can Fam Physician"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1176\/appi.psy.48.5.400"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-0062-x"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/1403494812465030"},{"key":"e_1_2_10_17_1","first-page":"17","article-title":"The challenges and unmet needs of people with neurodegenerative conditions and their carers","volume":"11","author":"Aoun S","year":"2006","journal-title":"J Community Nurses"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pneurobio.2013.04.005"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2006.00702.x"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840709337126"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0272-7358(02)00132-0"},{"key":"e_1_2_10_22_1","first-page":"217","article-title":"The application of attachment theory and family systems theory to the phenomena of parentification","volume":"15","author":"Hooper LM","year":"2007","journal-title":"TFJ"},{"key":"e_1_2_10_23_1","first-page":"157","article-title":"Parentification and caretaker syndrome: an empirical investigation","volume":"22","author":"Valleau MP","year":"1995","journal-title":"Family Therapy"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.3109\/15360288.2013.782938"},{"key":"e_1_2_10_25_1","first-page":"177","article-title":"Single\u2010parenting and parental cancer\u2010how does this affect the child? 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