{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T00:51:44Z","timestamp":1787014304945,"version":"build-2736575974"},"reference-count":52,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2022,7,18]],"date-time":"2022-07-18T00:00:00Z","timestamp":1658102400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2022,11]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>People with bleeding disorders (PwBd) and their caregivers face many challenges in developing viable self\u2010management strategies for living with the condition. Nurse\u2010led education can support them to overcome these challenges. However, it is often unclear what educational needs are addressed, how nurses educate PwBd and what didactic concepts they follow.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To gain deeper insights into nurse\u2010led patient education in haemophilia care and provide a basis for a more systematic and evidence\u2010based approach to this task.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A scoping review methodology was used. A systematic search for relevant publications on this topic was conducted in various databases between November 2020 and April 2021. Data sets were analysed following the PRISMA\u2010ScR\u2010checklist and using content analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of 588 studies identified, 23 sources of evidence met the inclusion criteria. The educational needs of PwBd and their families are extensive, multifaceted, and variable but rarely assessed systematically. These needs were met at certain times throughout their lifetimes. Nurse\u2010led education differed in content, duration, and modality, including interventions such as information, consultation and instruction. An improvement in treatment\u2010oriented self\u2010management and self\u2010efficacy was the most reported outcome. The didactic concepts on which the educational interventions were based were rarely specified.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>There is a lack of systematic approaches in assessing and addressing the educational needs of PwBd and their caregivers. High variability was found in the literature regarding nurse\u2010led patient education in haemophilia care. This suggests that more research is needed on this topic \u2013 not least on the interventions' conceptual foundations and impact models.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.14629","type":"journal-article","created":{"date-parts":[[2022,7,18]],"date-time":"2022-07-18T19:15:30Z","timestamp":1658171730000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Nurse\u2010led education of people with bleeding disorders and their caregivers: A scoping review"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0933-0500","authenticated-orcid":false,"given":"Julia","family":"Ballmann","sequence":"first","affiliation":[{"name":"Charit\u00e9\u2013Universit\u00e4tsmedizin Berlin Corporate member of Freie Universit\u00e4t Berlin and Humboldt Universit\u00e4t zu Berlin Institute of Health and Nursing Science  Berlin Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1856-9337","authenticated-orcid":false,"given":"Michael","family":"Ewers","sequence":"additional","affiliation":[{"name":"Charit\u00e9\u2013Universit\u00e4tsmedizin Berlin Corporate member of Freie Universit\u00e4t Berlin and Humboldt Universit\u00e4t zu Berlin Institute of Health and Nursing Science  Berlin Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,7,18]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/rth2.12155"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.7326\/M19-1208"},{"issue":"3","key":"e_1_2_9_4_1","first-page":"327","article-title":"Target of prophylaxis in severe haemophilia: more than factor levels","volume":"11","author":"Coppola A","year":"2013","journal-title":"Blood Transfus"},{"key":"e_1_2_9_5_1","unstructured":"BarthelsMW WermesC VoerkelW H\u00e4mophilie. In:H\u00e4mophiliegesellschaftD e.V zBvB eds.Hamburg: Deutsche H\u00e4mophiliegesellschaftzur Bek\u00e4mpfung von Blutungskrankheiten e.V;2015."},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1207\/S15324796ABM2601_01"},{"key":"e_1_2_9_8_1","unstructured":"M\u00fcller\u2010K\u00e4giE SchrijversLH.Guidelines for Haemophilia Nursing Care. Guidelines on factor administration via IV or CVAD. European Association for Haemophila and Allied Disorders (EAHAD Nurses Committee);2018."},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13999"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/NOR.0b013e3181db53e8"},{"key":"e_1_2_9_11_1","unstructured":"AndritschkeKRH Ringkamp H.Working\u2010Group of the German Hemophilia Assistants \u2010 History Purpose and Goals. 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