{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,27]],"date-time":"2026-05-27T12:10:14Z","timestamp":1779883814869,"version":"3.53.1"},"reference-count":34,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2020,2,12]],"date-time":"2020-02-12T00:00:00Z","timestamp":1581465600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2020,2,12]],"date-time":"2020-02-12T00:00:00Z","timestamp":1581465600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Huntington's Disease"],"published-print":{"date-parts":[[2020,2,12]]},"abstract":"<jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The average age for the onset of Huntington\u2019s disease (HD) is an age when many people have children and caretaking responsibilities; HD is therefore likely to impact the whole family, including children and adolescents. Despite an increased understanding of the challenges for young people of growing up in a family affected by HD, a continuing lack of available knowledge has led to inadequate youth-focused support in many countries.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>This study explored the risks of growing up in a family affected by HD, and provided a participant-generated overview of the main challenges the participants experienced, in order to enhance awareness and promote more youth-focused support.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>As part of a larger national study, this qualitative paper included 36 semi-structured interviews with young people and adults who had previous or current experiences of growing up in families affected by HD. The interviews were analysed using thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>The participants described challenges relating to four main domains of everyday life: family functioning, emotions and reactions, social functioning, and public and care services.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec specific-use=\"heading-level-1\">\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>This study contributes to an increased understanding of risk factors posed on young people by growing up with a parent with HD. The study highlighted challenges in several areas of life presenting a risk to the overall health and functioning of young people. We propose that this knowledge should be applied within a bioecological framework, to increase understanding and promote awareness of the possible risks posed, for young people, by HD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3233\/jhd-190377","type":"journal-article","created":{"date-parts":[[2020,2,14]],"date-time":"2020-02-14T09:25:17Z","timestamp":1581672317000},"page":"129-141","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":20,"title":["The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington\u2019s Disease"],"prefix":"10.1177","volume":"9","author":[{"given":"Siri","family":"Kjoelaas","sequence":"first","affiliation":[{"name":"Oslo University Hospital HF","place":["Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristine Hansen","family":"Tiller\u00e5s","sequence":"additional","affiliation":[{"name":"Oslo University Hospital HF","place":["Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristin Billaud","family":"Feragen","sequence":"additional","affiliation":[{"name":"Oslo University Hospital HF","place":["Norway"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2020,2,12]]},"reference":[{"key":"e_1_3_2_2_2","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-5-40"},{"key":"e_1_3_2_3_2","doi-asserted-by":"publisher","DOI":"10.1177\/0891988710383573"},{"key":"e_1_3_2_4_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.biopsych.2006.11.034"},{"key":"e_1_3_2_5_2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2007.128728"},{"key":"e_1_3_2_6_2","doi-asserted-by":"publisher","DOI":"10.1093\/bjsw\/bcw173"},{"key":"e_1_3_2_7_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011-2663"},{"key":"e_1_3_2_8_2","doi-asserted-by":"publisher","DOI":"10.3233\/jhd-150148"},{"key":"e_1_3_2_9_2","doi-asserted-by":"publisher","DOI":"10.3233\/jhd-180308"},{"key":"e_1_3_2_10_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2006.00702.x"},{"key":"e_1_3_2_11_2","doi-asserted-by":"publisher","DOI":"10.1176\/appi.psy.48.5.400"},{"key":"e_1_3_2_12_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2005.11.019"},{"key":"e_1_3_2_13_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-008-9151-6"},{"key":"e_1_3_2_14_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2011.01778.x"},{"key":"e_1_3_2_15_2","doi-asserted-by":"publisher","DOI":"10.1177\/1074840709337126"},{"key":"e_1_3_2_16_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-014-9755-y"},{"key":"e_1_3_2_17_2","doi-asserted-by":"publisher","DOI":"10.1111\/cge.12893"},{"key":"e_1_3_2_18_2","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-018-0395-z"},{"key":"e_1_3_2_19_2","doi-asserted-by":"publisher","DOI":"10.1080\/17450128.2014.980370"},{"key":"e_1_3_2_20_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2009.02.049"},{"key":"e_1_3_2_21_2","doi-asserted-by":"publisher","DOI":"10.1111\/scs.12212"},{"key":"e_1_3_2_22_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-015-0324-8"},{"key":"e_1_3_2_23_2","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_3_2_24_2","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-444-63233-3.00017-8"},{"key":"e_1_3_2_25_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10566-014-9258-x"},{"key":"e_1_3_2_26_2","doi-asserted-by":"publisher","DOI":"10.1111\/jftr.12022"},{"key":"e_1_3_2_27_2","doi-asserted-by":"publisher","DOI":"10.1111\/jftr.12165"},{"key":"e_1_3_2_28_2","doi-asserted-by":"publisher","DOI":"10.1037\/0893-3200.10.2.115"},{"key":"e_1_3_2_29_2","doi-asserted-by":"publisher","DOI":"10.1016\/b978-0-12-801893-4.00015-8"},{"key":"e_1_3_2_30_2","doi-asserted-by":"publisher","unstructured":"FermU NilssonS NolbrisMJ LinnsandP JonssonA. 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