{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,13]],"date-time":"2026-01-13T08:47:32Z","timestamp":1768294052464,"version":"3.49.0"},"reference-count":19,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2012,9,25]],"date-time":"2012-09-25T00:00:00Z","timestamp":1348531200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2013,3]]},"abstract":"<jats:title>Summary<\/jats:title><jats:p>Limited research has been conducted on how the female carrier experiences her life with a haemophilic child, and earlier studies are mostly questionnaire\u2010based. No previous qualitative study on the female carrier's situation has been conducted in Sweden. The aim of the study was to describe the lived experience of being a carrier of severe or moderate haemophilia and of being the mother of a haemophilic child. The study was conducted via qualitative interviews and analysed by means of a phenomenological hermeneutic method; a total of 13 haemophilia carriers were interviewed in 2010. Being a carrier of haemophilia and having a haemophilic child was life changing. The women moved from a state of sad, guilty chaos to reconciling themselves with the new situation. Our analysis revealed three acts in which phenomena appeared: the time after diagnosis, the turning point and reconciliation with a changing life. Emerging as crucial to the process of reconciliation with a changing life was a sense of being fully informed and supported. The <jats:styled-content style=\"fixed-case\">H<\/jats:styled-content>aemophilia <jats:styled-content style=\"fixed-case\">T<\/jats:styled-content>reatment <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>entre (<jats:styled-content style=\"fixed-case\">HTC<\/jats:styled-content>) should create an environment that encourages learning, and the team should invite and encourage the woman's partner to be actively involved in the child's care. Moreover, the results indicate that it would be beneficial to invite female carriers to receive patient education at the <jats:styled-content style=\"fixed-case\">HTC<\/jats:styled-content> before they plan to start a family. During this visit, the woman may gain a greater understanding of her carriership to prepare her for future decisions concerning prenatal diagnosis, for example.<\/jats:p>","DOI":"10.1111\/hae.12026","type":"journal-article","created":{"date-parts":[[2012,9,25]],"date-time":"2012-09-25T19:03:47Z","timestamp":1348599827000},"page":"219-224","source":"Crossref","is-referenced-by-count":34,"title":["The experience of being a female carrier of haemophilia and the mother of a haemophilic child"],"prefix":"10.1111","volume":"19","author":[{"given":"L.","family":"Myrin\u2010Westesson","sequence":"first","affiliation":[{"name":"Department of Medicine\/Hematology and Coagulation Sahlgrenska University Hospital Coagulation Centre Gothenburg Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"F.","family":"Baghaei","sequence":"additional","affiliation":[{"name":"Department of Medicine\/Hematology and Coagulation Sahlgrenska University Hospital Coagulation Centre Gothenburg Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"F.","family":"Friberg","sequence":"additional","affiliation":[{"name":"The Sahlgrenska Academy University of Gothenburg Institute of Health and Care Sciences Gothenburg Sweden"},{"name":"Department of Health Faculty of Social Sciences University of Stavanger Norway"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2012,9,25]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1182\/asheducation-2002.1.1"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/9781444318555"},{"key":"e_1_2_12_4_1","author":"Antovic JP","year":"2010","journal-title":"Essential Guide to Blood Coagulation"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2007.01494.x"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2006.01428.x"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2008.01803.x"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.1999.00213.x"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2011.02683.x"},{"key":"e_1_2_12_10_1","author":"Dahlberg K","year":"2008","journal-title":"Reflective Lifeworld Research"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1471-6712.2004.00258.x"},{"key":"e_1_2_12_12_1","author":"Ricoeur P","year":"1976","journal-title":"Interpretation Theory: Discourse and the Surplus of Meaning"},{"key":"e_1_2_12_13_1","author":"Ricoeur P","year":"1998","journal-title":"Hermeneutics and the Human Sciences. 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