{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T17:29:56Z","timestamp":1791394196940,"version":"4.3.3"},"reference-count":25,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2015,3,9]],"date-time":"2015-03-09T00:00:00Z","timestamp":1425859200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"National Institute of Health","award":["5R01HD043100-05"],"award-info":[{"award-number":["5R01HD043100-05"]}]},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"crossref","award":["#303189"],"award-info":[{"award-number":["#303189"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"crossref","award":["#1004384"],"award-info":[{"award-number":["#1004384"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"crossref","award":["#353514"],"award-info":[{"award-number":["#353514"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"crossref","award":["#57256"],"award-info":[{"award-number":["#57256"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2015,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p><jats:styled-content style=\"fixed-case\">R<\/jats:styled-content>ett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common co\u2010morbidity. Spinal fusion may be recommended if the scoliosis is progressive. This qualitative study investigated recovery of girls with <jats:styled-content style=\"fixed-case\">R<\/jats:styled-content>ett syndrome during the first 12 post\u2010operative months and explored family perspectives and coping around the time of surgery.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Parents registered with the population\u2010based <jats:styled-content style=\"fixed-case\">A<\/jats:styled-content>ustralian <jats:styled-content style=\"fixed-case\">R<\/jats:styled-content>ett <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>yndrome <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>atabase were recruited to this study if their daughter had a confirmed pathogenic <jats:styled-content style=\"fixed-case\"><jats:italic>MECP2<\/jats:italic><\/jats:styled-content> mutation and spinal fusion between 2006 and 2012. Twenty\u2010five interviews were conducted to determine their daughter's recovery and parental stresses and coping. Themes in the interview data were identified with content analysis, and the regaining of gross motor skills over the first 12 post\u2010operative months was described with time\u2010to\u2010event (survival) analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Pain and energy levels, appetite, mood and coinciding health issues influenced their daughter's post\u2010operative recovery. The majority of girls recovered preoperative sitting (88%), standing (81%) and walking (80%) by 12 months. The decision to proceed with surgery was associated with feelings of fear, obligation, relief and guilt for families. Development of complications, poor support and feelings of isolation increased their emotional burden whereas adequate information and discharge preparation, confidence in self and staff, and balancing personal needs with their daughter's care relieved this burden.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>Our study identified clinical practice issues in relation to families whose daughter with <jats:styled-content style=\"fixed-case\">R<\/jats:styled-content>ett syndrome undergoes spinal fusion, issues that are also relevant to other severe disabilities. Return of wellness and gross motor skills following spinal fusion in girls with <jats:styled-content style=\"fixed-case\">R<\/jats:styled-content>ett syndrome occurred within the first 12 post\u2010operative months in most cases. Parents require information and practical support to alleviate their emotional burden.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12243","type":"journal-article","created":{"date-parts":[[2015,3,10]],"date-time":"2015-03-10T03:20:27Z","timestamp":1425957627000},"page":"1000-1009","source":"Crossref","is-referenced-by-count":18,"title":["Spinal fusion in girls with <scp>R<\/scp>ett syndrome: post\u2010operative recovery and family experiences"],"prefix":"10.1111","volume":"41","author":[{"given":"C.","family":"Marr","sequence":"first","affiliation":[{"name":"School of Physiotherapy and Exercise Science Curtin University  Perth WA Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Leonard","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute University of Western Australia  Perth WA Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"I.","family":"Torode","sequence":"additional","affiliation":[{"name":"Department of Orthopaedics Royal Children's Hospital  Melbourne Vic. Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Downs","sequence":"additional","affiliation":[{"name":"School of Physiotherapy and Exercise Science Curtin University  Perth WA Australia"},{"name":"Telethon Kids Institute University of Western Australia  Perth WA Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2015,3,9]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/08830738060210091501"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638280902846392"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/13810"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.12049"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzt051"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-2002-36540"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2007-1641"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0b013e3181a95ca4"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33314"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.3109\/17518423.2014.898107"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0b013e3182404698"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/0310057X0403200413"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinane.2008.06.033"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/mrdd.10020"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/08830738030180101201"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.5014\/ajot.45.3.214"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00586-008-0876-6"},{"key":"e_1_2_8_19_1","volume-title":"Qualitative Research Methods","author":"Liamputtong P.","year":"2009"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1136\/qshc.2.1.49"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPG.0b013e31824b6159"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22124"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00134-006-0190-x"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-011-1655-3"},{"key":"e_1_2_8_25_1","volume-title":"Pediatric Acute Care: A Guide for Interprofessional Practice","author":"Reuter\u2010Rice K.","year":"2011"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/1054773807302732"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcch.12243","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12243","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T04:57:56Z","timestamp":1696309076000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.12243"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,3,9]]},"references-count":25,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2015,11]]}},"alternative-id":["10.1111\/cch.12243"],"URL":"https:\/\/doi.org\/10.1111\/cch.12243","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2015,3,9]]}}}