{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T16:28:23Z","timestamp":1788452903496,"version":"build-2803163510"},"reference-count":52,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2017,3,21]],"date-time":"2017-03-21T00:00:00Z","timestamp":1490054400000},"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":[[2017,5]]},"abstract":"<jats:sec><jats:title>Introduction<\/jats:title><jats:p>Children growing up with haemophilia are at greater risk for psychosocial problems than their healthy peers. Providing psychosocial care to children with haemophilia and their families is indispensable, since psychosocial factors can have a significant impact on health and health\u2010related quality of life (HRQOL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Aims<\/jats:title><jats:p>Our aim was to give a description of psychosocial care provided by the multidisciplinary team of the Hemophilia Comprehensive Care Centre (HCCC) at the Emma Children's Hospital in Amsterdam, the Netherlands. With this overview, other caregivers and hospitals can benefit in organizing their psychosocial care for children with haemophilia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The focus of the psychosocial care provided by the multidisciplinary team is on preventing psychosocial problems and medical\u2010related stress, and supporting and equipping the child with haemophilia and its parents with as many skills as possible to lead an independent life with a high HRQOL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Core elements of the psychosocial care are therefore monitoring and screening of HRQOL (e.g. in daily clinical practice via <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xlink:href=\"http:\/\/www.hetklikt.nu\">www.hetklikt.nu<\/jats:ext-link>), psychoeducation (haemophilia camp, haemophilia school, disease\u2010specific activities, meetings for girls, parent meetings), practical help (Emma at Work, an employment agency for adolescents and young adults; Educational Facility and school visits), psychosocial interventions (the On Track group intervention and the Haemophilia Coping and Perception Test) and individual care (psychological counselling and referrals).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>By providing this overview of psychosocial support offered and by sharing this knowledge, psychosocial care can become more structured and consistent between HCCCs around the world. Potentially, processes and outcomes of care can be improved.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.13186","type":"journal-article","created":{"date-parts":[[2017,3,21]],"date-time":"2017-03-21T15:26:03Z","timestamp":1490109963000},"page":"362-369","source":"Crossref","is-referenced-by-count":16,"title":["Psychosocial care for children with haemophilia and their parents in the Netherlands"],"prefix":"10.1111","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8201-2125","authenticated-orcid":false,"given":"P.F.","family":"Limperg","sequence":"first","affiliation":[{"name":"Psychosocial Department Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.","family":"Haverman","sequence":"additional","affiliation":[{"name":"Psychosocial Department Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Beijlevelt","sequence":"additional","affiliation":[{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"van der Pot","sequence":"additional","affiliation":[{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"G.","family":"Zaal","sequence":"additional","affiliation":[{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"W.A.","family":"de Boer","sequence":"additional","affiliation":[{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Fijnvandraat","sequence":"additional","affiliation":[{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Peters","sequence":"additional","affiliation":[{"name":"Department of Pediatric\u2010Hematology Emma Children's Hospital Academic Medical Centre (AMC) Amsterdam The Netherlands"},{"name":"Hemophilia Comprehensive Care Treatment Centre Academic Medical Centre (AMC) Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. 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