{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,26]],"date-time":"2025-10-26T21:24:21Z","timestamp":1761513861285},"reference-count":25,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2016,8,11]],"date-time":"2016-08-11T00:00:00Z","timestamp":1470873600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["(5R01HD043100\u201005)"],"award-info":[{"award-number":["(5R01HD043100\u201005)"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["303189 and 1004384"],"award-info":[{"award-number":["303189 and 1004384"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2017,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Children with severe disability often develop osteoporosis and have an increased risk of fracture. In Rett syndrome, the prevalence of fracture is four times greater than in the general population, and the femur is commonly affected. This study used qualitative methods to investigate the regaining of mobility within 12\u2009months following femoral fracture in Rett syndrome and parent caregiver experiences.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Caregivers (<jats:italic>n<\/jats:italic>\u2009=\u200914) of cases registered with the Australian Rett Syndrome Database with a daughter with Rett syndrome were recruited if their daughter sustained a femoral fracture between 2009 and 2014. Median (interquartile range) age at fracture was 11\u2009years and 4\u2009months (8\u2009years and 8\u2009months to 22\u2009years and 3\u2009months). Qualitative methods were used to investigate parent\/caregiver experiences and their daughter's recovery following fracture. Themes in the interview data were identified with thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Operative management was chosen for those walking independently and non\u2010operative management for most of the remaining. All who walked independently and one of the four who required assistance recovered pre\u2010operative walking skills within 6\u2009months. Themes identified by caregivers related to the complexities of pain recognition, the caregiver emotional journey and later rebuilding of relationships with service providers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Those who walked with assistance were vulnerable to loss of this skill. Difficulties in pain recognition increased time to diagnose fracture, and the acute episode was associated with heightened caregiver stress. Service providers can use family\u2010centred practice models to support the strengthening of family functioning following this acute event that is surprisingly common in those with severe disability.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12392","type":"journal-article","created":{"date-parts":[[2016,8,11]],"date-time":"2016-08-11T09:12:37Z","timestamp":1470906757000},"page":"232-239","source":"Crossref","is-referenced-by-count":5,"title":["A qualitative investigation of recovery after femoral fracture in Rett syndrome"],"prefix":"10.1111","volume":"43","author":[{"given":"T.","family":"Horne","sequence":"first","affiliation":[{"name":"School of Physiotherapy and Exercise Science Curtin University  Perth WA Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"H.","family":"Leonard","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute The University of Western Australia  West Perth WA Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K.","family":"Stannage","sequence":"additional","affiliation":[{"name":"Princess Margaret Hospital  Subiaco WA Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.","family":"Downs","sequence":"additional","affiliation":[{"name":"School of Physiotherapy and Exercise Science Curtin University  Perth WA Australia"},{"name":"Telethon Kids Institute The University of Western Australia  West Perth WA Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2016,8,11]]},"reference":[{"key":"e_1_2_6_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpain.2013.04.016"},{"key":"e_1_2_6_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2007-1641"},{"key":"e_1_2_6_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33314"},{"key":"e_1_2_6_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0000000000001399"},{"key":"e_1_2_6_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37500"},{"key":"e_1_2_6_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9604.2008.00384.x"},{"key":"e_1_2_6_8_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e3182242461"},{"key":"e_1_2_6_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bone.2007.12.003"},{"key":"e_1_2_6_10_1","doi-asserted-by":"publisher","DOI":"10.1359\/jbmr.091007"},{"key":"e_1_2_6_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bone.2015.01.023"},{"key":"e_1_2_6_12_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e31820b937d"},{"key":"e_1_2_6_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/01241398-199009000-00003"},{"key":"e_1_2_6_14_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2006-0439"},{"key":"e_1_2_6_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.bpo.0000235228.45539.c7"},{"key":"e_1_2_6_16_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11832-009-0191-8"},{"key":"e_1_2_6_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.1999.tb00610.x"},{"key":"e_1_2_6_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2002.tb00272.x"},{"key":"e_1_2_6_19_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e318180ebcd"},{"key":"e_1_2_6_20_1","doi-asserted-by":"crossref","first-page":"133","DOI":"10.3233\/PRM-140282","article-title":"Bone health in children with neuromuscular disorders","volume":"7","author":"Ness K.","year":"2014","journal-title":"Journal of Pediatric Rehabilitation Medicine"},{"key":"e_1_2_6_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22124"},{"key":"e_1_2_6_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2006.00875.x"},{"key":"e_1_2_6_23_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e31820bc6d3"},{"key":"e_1_2_6_24_1","doi-asserted-by":"publisher","DOI":"10.1097\/AJP.0b013e318274b6bd"},{"key":"e_1_2_6_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/jsr.12240"},{"key":"e_1_2_6_26_1","first-page":"180","article-title":"The treatment of femoral shaft fractures in children: a systematic overview and critical appraisal of the literature","volume":"43","author":"Wright J. 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