{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,11]],"date-time":"2026-05-11T11:41:44Z","timestamp":1778499704234,"version":"3.51.4"},"reference-count":19,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,7,10]],"date-time":"2023-07-10T00:00:00Z","timestamp":1688947200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Haemophilia is an inherited bleeding disorder. Mothers of children with haemophilia experience stress, anxiety and different types of burdens that affect their life negatively.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>This study aimed to explore the lived experience of mothers of children with haemophilia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A descriptive phenomenological design was utilized. The participants were selected purposively from the Jordanian Association for Thalassemia and Hemophilia. Data saturation was achieved by interviewing 20 mothers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Five themes emerged: (1) the challenges related to the diagnosis, the availability and administration of the clotting factors, and the occurrence of the bleeding emergency; (2) physical, social, psychological and financial burden; (3) fear of child death and disability; (4) stigmatization; and (5) lack of educational and medical support.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Mothers of children with haemophilia suffer from physical, psychological and social consequences. Healthcare providers should carry out educational sessions regarding the importance of support for the family and throughout the life of the child.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14820","type":"journal-article","created":{"date-parts":[[2023,7,10]],"date-time":"2023-07-10T17:13:44Z","timestamp":1689009224000},"page":"1226-1233","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["The lived experience of mothers of children with haemophilia in Jordan: A phenomenological study"],"prefix":"10.1111","volume":"29","author":[{"given":"Hala Mahmoud","family":"Obeidat","sequence":"first","affiliation":[{"name":"Faculty of Nursing Mutah University Al\u2010Karak Jordan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maleka Hussein","family":"Habashneh","sequence":"additional","affiliation":[{"name":"AL\u2010 Basheer hospital Amman Jordan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9408-2243","authenticated-orcid":false,"given":"Doa'a Abdullah","family":"Dwairej","sequence":"additional","affiliation":[{"name":"Faculty of Nursing Al\u2010Hussein Bin Talal University Ma'an Jordan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aseel Hussein","family":"Obeidat","sequence":"additional","affiliation":[{"name":"Faculty of Medicine University of Jordan Amman Jordan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5493-0268","authenticated-orcid":false,"given":"Haytham Mohammad","family":"Al\u2010Oran","sequence":"additional","affiliation":[{"name":"Faculty of Nursing Mutah University Al\u2010Karak Jordan"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,7,10]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(11)61139-2"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2011.02588.x"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14012"},{"key":"e_1_2_11_5_1","unstructured":"Centers for Disease Control and Prevention. (2017).What is Hemophilia?.https:\/\/www.cdc.gov\/ncbddd\/hemophilia\/facts.html"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.17225\/jhp00075"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200106073442307"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.3906\/sag-1310-82"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2012-02-409185"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.17225\/jhp00066"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/mono.12296"},{"key":"e_1_2_11_12_1","volume-title":"Existential\u2010Phenomenological Alternatives for Psychology","author":"Colaizzi PF","year":"1978"},{"key":"e_1_2_11_13_1","unstructured":"CIA world factbook.Health status in Jordan(2023). (Accessed June 2023).https:\/\/www.cia.gov\/library\/publications\/the\u2010world\u2010factbook\/geos\/jo.html"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2007.01494.x"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13736"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12026"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.26167"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12379"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493517705736"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12781"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.14820","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,29]],"date-time":"2024-02-29T04:50:43Z","timestamp":1709182243000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.14820"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,10]]},"references-count":19,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2023,9]]}},"alternative-id":["10.1111\/hae.14820"],"URL":"https:\/\/doi.org\/10.1111\/hae.14820","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,10]]},"assertion":[{"value":"2022-12-20","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-06-18","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-07-10","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}