{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,5]],"date-time":"2026-01-05T22:03:58Z","timestamp":1767650638825},"reference-count":24,"publisher":"Cambridge University Press (CUP)","issue":"1","license":[{"start":{"date-parts":[[2010,10,1]],"date-time":"2010-10-01T00:00:00Z","timestamp":1285891200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2011,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951110001290_abs1\" sec-type=\"general\"><jats:title>Background<\/jats:title><jats:p>Hypertrophic cardiomyopathy is hereditary and the commonest medical cause of sudden death in childhood and adolescence, which is the reason for recommending screening in children with an affected parent. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the affected individual and impacts on the whole family.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951110001290_abs2\" sec-type=\"general\"><jats:title>Objective<\/jats:title><jats:p>To describe parents\u2019 experiences of how the diagnosis of hypertrophic cardiomyopathy in their child affects daily life.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951110001290_abs3\" sec-type=\"methods\"><jats:title>Method<\/jats:title><jats:p>Twelve parents with asymptomatic children diagnosed with hypertrophic cardiomyopathy through family screening were interviewed 12\u201324 months after the diagnosis. Analysis was conducted with qualitative content analysis.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951110001290_abs4\" sec-type=\"results\"><jats:title>Results<\/jats:title><jats:p>Parents described the immediate reaction of shock, grief, and injustice but were also grateful that the child was still asymptomatic. The diagnosis caused a significant change in lifestyle for most families due mainly to restrictions of sports activities. Parents had to adapt to the new life and develop strategies to protect their child. Death became a reality causing feelings of vulnerability. Regular medical check-ups and access to the liaison nurse were described as important factors of reassurance.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951110001290_abs5\" sec-type=\"conclusion\"><jats:title>Conclusions<\/jats:title><jats:p>Parents experienced early diagnosis as positive in a long-term perspective. The main changes perceived were ascribed to lifestyle modifications. Parents with athletic children experienced the lifestyle modifications as more severe. They strived to create a new life where they could feel secure and have faith in the future, and emphasised the need of regular follow-up and support from health care professionals as \u201cmental pain relief\u201d, which helped them achieve a new state of normality.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951110001290","type":"journal-article","created":{"date-parts":[[2010,10,1]],"date-time":"2010-10-01T10:21:32Z","timestamp":1285928492000},"page":"8-14","source":"Crossref","is-referenced-by-count":12,"title":["Parents\u2019 experiences of having an asymptomatic child diagnosed with hypertrophic cardiomyopathy through family screening"],"prefix":"10.1017","volume":"21","author":[{"given":"Ewa-Lena","family":"Bratt","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ingegerd","family":"\u00d6stman-Smith","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carina","family":"Sparud-Lundin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"B. \u00c5sa","family":"Axelsson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2010,10,1]]},"reference":[{"key":"S1047951110001290_ref13","doi-asserted-by":"publisher","DOI":"10.1097\/00012272-200009000-00006"},{"key":"S1047951110001290_ref14","volume-title":"Designing Qualitative Research","author":"Marshall","year":"2006"},{"key":"S1047951110001290_ref24","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2005.04.043"},{"key":"S1047951110001290_ref10","doi-asserted-by":"publisher","DOI":"10.1016\/S0735-1097(99)00421-0"},{"key":"S1047951110001290_ref20","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.30861"},{"key":"S1047951110001290_ref8","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehi108"},{"key":"S1047951110001290_ref15","volume-title":"The Practice of Nursing Research: Conduct, Critique and Utilization","author":"Burns","year":"2005"},{"key":"S1047951110001290_ref11","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951105001824"},{"key":"S1047951110001290_ref9","doi-asserted-by":"publisher","DOI":"10.1161\/01.CIR.0000128363.85581.E1"},{"key":"S1047951110001290_ref19","unstructured":"19. World Medical Association. Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects: The World Medical Association, 1964."},{"key":"S1047951110001290_ref4","doi-asserted-by":"publisher","DOI":"10.1161\/01.CIR.0000066323.15244.54"},{"key":"S1047951110001290_ref3","doi-asserted-by":"publisher","DOI":"10.1161\/01.CIR.92.4.785"},{"key":"S1047951110001290_ref12","unstructured":"12. Pl\u00f6tslig hj\u00e4rtd\u00f6d bland barn, ungdomar och unga vuxna vid idrott och fysisk anstr\u00e4ngning. Komplettering av Socialstyrelsens riktlinjer f\u00f6r hj\u00e4rtsjukv\u00e5rd 2004. In: Welfare TNBoHa (ed.). Nationella riktlinjer f\u00f6r v\u00e5rd, behandling och omsorg, Stockholm, 2006."},{"key":"S1047951110001290_ref7","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199808063390602"},{"key":"S1047951110001290_ref17","volume-title":"Content Analysis: An Introduction to Its Methodology","author":"Krippendorff","year":"2004"},{"key":"S1047951110001290_ref21","doi-asserted-by":"publisher","DOI":"10.1111\/j.1745-7599.2006.00132.x"},{"key":"S1047951110001290_ref23","doi-asserted-by":"crossref","DOI":"10.1523\/JNEUROSCI.20-19-j0004.2000","article-title":"Event-related activation in the human amygdala associates with later memory for individual emotional experience","volume":"20","author":"Canli","year":"2000","journal-title":"J Neurosci"},{"key":"S1047951110001290_ref5","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehn122"},{"key":"S1047951110001290_ref2","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjcard.2004.03.007"},{"key":"S1047951110001290_ref1","doi-asserted-by":"publisher","DOI":"10.1016\/S0002-9149(87)80107-8"},{"key":"S1047951110001290_ref16","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951109003746"},{"key":"S1047951110001290_ref6","doi-asserted-by":"publisher","DOI":"10.1097\/HJR.0b013e328010d99f"},{"key":"S1047951110001290_ref18","doi-asserted-by":"publisher","DOI":"10.1016\/j.nedt.2003.10.001"},{"key":"S1047951110001290_ref22","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32592"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951110001290","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,4,27]],"date-time":"2019-04-27T19:37:00Z","timestamp":1556393820000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951110001290\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2010,10,1]]},"references-count":24,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2011,2]]}},"alternative-id":["S1047951110001290"],"URL":"https:\/\/doi.org\/10.1017\/s1047951110001290","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2010,10,1]]}}}