{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T00:52:00Z","timestamp":1787014320681,"version":"build-2736575974"},"reference-count":45,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2013,5,27]],"date-time":"2013-05-27T00:00:00Z","timestamp":1369612800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2015,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>\n                      There is an increasing prevalence of children\/young people with long\u2010term conditions (\n                      <jats:styled-content style=\"fixed-case\">LTC<\/jats:styled-content>\n                      ) in the\n                      <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>\n                      due to improvements in health\u2010care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>\n                      This study aimed to understand self\u2010management of haemophilia, from a child's perspective, in the 21st century in the\n                      <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>\n                      where intensive prophylactic therapy is given from early childhood.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A qualitative study using grounded theory to evaluate life\u2010experiences of children and young people with haemophilia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and participants<\/jats:title>\n                    <jats:p>Thirty boys aged 4\u201316 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Intervention\/variables<\/jats:title>\n                    <jats:p>Multimethod qualitative research including age\u2010appropriate research tools (draw and write, photo\u2010elicitation and interviews) to facilitate data collection from children.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Boys develop self\u2010management skills over time. They learn from health\u2010care professionals, their parents and other family members with haemophilia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Self\u2010management skills (bleed recognition, self\u2010infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self\u2010management at a relatively young age and are experts in their own haemophilia care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.12083","type":"journal-article","created":{"date-parts":[[2013,5,28]],"date-time":"2013-05-28T00:42:59Z","timestamp":1369701779000},"page":"1105-1113","source":"Crossref","is-referenced-by-count":43,"title":["Self\u2010management and skills acquisition in boys with haemophilia"],"prefix":"10.1111","volume":"18","author":[{"given":"Kate","family":"Khair","sequence":"first","affiliation":[{"name":"Great Ormond Street Hospital for Children NHS Foundation Trust London London UK"},{"name":"University of Greenwich London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liz","family":"Meerabeau","sequence":"additional","affiliation":[{"name":"University of Greenwich London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Faith","family":"Gibson","sequence":"additional","affiliation":[{"name":"Great Ormond Street Hospital for Children NHS Foundation Trust and London South Bank University London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,5,27]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/17423953050010010801"},{"issue":"10","key":"e_1_2_10_3_1","first-page":"S9","article-title":"Enhancing patient engagement in chronic disease self\u2010management support initiatives in Australia: the need for an integrated approach","volume":"189","author":"Jordan J","year":"2008","journal-title":"Medical Journal of Australia"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1752-9824.2011.01096.x"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01310.x"},{"key":"e_1_2_10_6_1","first-page":"305","article-title":"Perceptions of effective self\u2010care support for children and young people with long\u2010term conditions","volume":"39","author":"Kirk S","year":"2013","journal-title":"Journal of Clinical Nursing"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2141.2010.08139.x"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2008.01695.x"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2141.1996.420960.x"},{"key":"e_1_2_10_10_1","first-page":"10","article-title":"Managing haemophilia at home","volume":"1","author":"Khair K","year":"2006","journal-title":"British Journal of Home Healthcare"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1355-0691.2004.00876.x"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.304.6830.829"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1080\/09540129308258586"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.68.1.133"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.7748\/nr2009.07.16.4.56.c7161"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1080\/14725869908583801"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732308318230"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1177\/1744987107079791"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.7748\/nr2013.07.20.6.40.e318"},{"key":"e_1_2_10_20_1","volume-title":"Constructing Grounded Theory. 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