{"id":"https://openalex.org/W2133375783","doi":"https://doi.org/10.1080/09638280902846392","title":"Parental experiences of scoliosis management in Rett syndrome","display_name":"Parental experiences of scoliosis management in Rett syndrome","publication_year":2009,"publication_date":"2009-01-01","ids":{"openalex":"https://openalex.org/W2133375783","doi":"https://doi.org/10.1080/09638280902846392","mag":"2133375783","pmid":"https://pubmed.ncbi.nlm.nih.gov/19479541"},"language":"en","primary_location":{"id":"doi:10.1080/09638280902846392","doi":"https://doi.org/10.1080/09638280902846392","is_oa":false,"landing_page_url":"https://doi.org/10.1080/09638280902846392","pdf_url":null,"source":{"id":"https://openalex.org/S12843020","display_name":"Disability and Rehabilitation","issn_l":"0963-8288","issn":["0963-8288","1464-5165"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-c","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320449","host_organization_name":"Informa","host_organization_lineage":["https://openalex.org/P4310320449"],"host_organization_lineage_names":["Informa"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Disability and Rehabilitation","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5088336168","display_name":"Sarah Ager","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2801351171","display_name":"King Edward Memorial Hospital","ror":"https://ror.org/00ns3e792","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I2801351171"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Sarah Ager","raw_affiliation_strings":["Genetic Services of Western Australia, King Edward Memorial Hospital, Perth, Western Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Genetic Services of Western Australia, King Edward Memorial Hospital, Perth, Western Australia","institution_ids":["https://openalex.org/I2801351171"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5045593878","display_name":"Jenny Anne Downs","orcid":"https://orcid.org/0000-0001-7358-9037","observed_orcids":["https://orcid.org/0000-0001-7358-9037"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Jenny Downs","raw_affiliation_strings":["Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5080296649","display_name":"Sue Fyfe","orcid":"https://orcid.org/0000-0002-1606-1276","observed_orcids":["https://orcid.org/0000-0002-1606-1276"]},"institutions":[{"id":"https://openalex.org/I205640436","display_name":"Curtin University","ror":"https://ror.org/02n415q13","country_code":"AU","type":"education","lineage":["https://openalex.org/I205640436"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Sue Fyfe","raw_affiliation_strings":["School of Public Health and Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, Western Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Public Health and Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, Western Australia","institution_ids":["https://openalex.org/I205640436"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5062515759","display_name":"Helen Leonard","orcid":"https://orcid.org/0000-0001-6405-5834","observed_orcids":["https://orcid.org/0000-0001-6405-5834","https://orcid.org/0000-0002-3733-5678"]},"institutions":[{"id":"https://openalex.org/I175234967","display_name":"The Kids Research Institute Australia","ror":"https://ror.org/01dbmzx78","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I175234967"]},{"id":"https://openalex.org/I177877127","display_name":"The University of Western Australia","ror":"https://ror.org/047272k79","country_code":"AU","type":"education","lineage":["https://openalex.org/I177877127"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Helen Leonard","raw_affiliation_strings":["Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, Western Australia","institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5062515759"],"corresponding_institution_ids":["https://openalex.org/I175234967","https://openalex.org/I177877127"],"apc_list":null,"apc_paid":null,"fwci":0.3374,"has_fulltext":false,"cited_by_count":13,"citation_normalized_percentile":{"value":0.70106433,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":97},"biblio":{"volume":"31","issue":"23","first_page":"1917","last_page":"1924"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11030","display_name":"Scoliosis diagnosis and treatment","score":0.9585000276565552,"subfield":{"id":"https://openalex.org/subfields/2746","display_name":"Surgery"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11030","display_name":"Scoliosis diagnosis and treatment","score":0.9585000276565552,"subfield":{"id":"https://openalex.org/subfields/2746","display_name":"Surgery"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11772","display_name":"Genetics and Neurodevelopmental Disorders","score":0.023499999195337296,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T12830","display_name":"Pectus Deformity Diagnosis and Treatment","score":0.004999999888241291,"subfield":{"id":"https://openalex.org/subfields/2746","display_name":"Surgery"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/rett-syndrome","display_name":"Rett syndrome","score":0.9959999918937683},{"id":"https://openalex.org/keywords/scoliosis","display_name":"scoliosis","score":0.9890000224113464},{"id":"https://openalex.org/keywords/parental-experiences","display_name":"parental experiences","score":0.7979999780654907},{"id":"https://openalex.org/keywords/scoliosis-management","display_name":"scoliosis management","score":0.9399999976158142},{"id":"https://openalex.org/keywords/scoliosis-surgery","display_name":"scoliosis surgery","score":0.7590000033378601},{"id":"https://openalex.org/keywords/physical-therapy","display_name":"physiotherapy","score":0.8119999766349792},{"id":"https://openalex.org/keywords/bracing","display_name":"bracing","score":0.8920000195503235},{"id":"https://openalex.org/keywords/family-centered-care","display_name":"family-centered care","score":0.8450000286102295},{"id":"https://openalex.org/keywords/healthcare-provider-communication","display_name":"provider communication","score":0.6230000257492065},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.7739999890327454},{"id":"https://openalex.org/keywords/treatment-decision-making","display_name":"treatment decision-making","score":0.5230000019073486}],"concepts":[{"id":"https://openalex.org/C2780955175","wikidata":"https://www.wikidata.org/wiki/Q174857","display_name":"Scoliosis","level":2,"score":0.9436743259429932},{"id":"https://openalex.org/C2777543196","wikidata":"https://www.wikidata.org/wiki/Q917357","display_name":"Rett syndrome","level":3,"score":0.8580629229545593},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.6590632200241089},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.6102039813995361},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.48558157682418823},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.3273305594921112},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.14938724040985107},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.09756246209144592},{"id":"https://openalex.org/C185592680","wikidata":"https://www.wikidata.org/wiki/Q2329","display_name":"Chemistry","level":0,"score":0.0},{"id":"https://openalex.org/C55493867","wikidata":"https://www.wikidata.org/wiki/Q7094","display_name":"Biochemistry","level":1,"score":0.0},{"id":"https://openalex.org/C104317684","wikidata":"https://www.wikidata.org/wiki/Q7187","display_name":"Gene","level":2,"score":0.0}],"mesh":[{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002675","descriptor_name":"Child, Preschool","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003657","descriptor_name":"Decision Making","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007223","descriptor_name":"Infant","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012600","descriptor_name":"Scoliosis","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":true},{"descriptor_ui":"D012600","descriptor_name":"Scoliosis","qualifier_ui":"Q000534","qualifier_name":"rehabilitation","is_major_topic":true},{"descriptor_ui":"D015518","descriptor_name":"Rett Syndrome","qualifier_ui":"Q000150","qualifier_name":"complications","is_major_topic":true}],"locations_count":4,"locations":[{"id":"doi:10.1080/09638280902846392","doi":"https://doi.org/10.1080/09638280902846392","is_oa":false,"landing_page_url":"https://doi.org/10.1080/09638280902846392","pdf_url":null,"source":{"id":"https://openalex.org/S12843020","display_name":"Disability and Rehabilitation","issn_l":"0963-8288","issn":["0963-8288","1464-5165"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-c","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320449","host_organization_name":"Informa","host_organization_lineage":["https://openalex.org/P4310320449"],"host_organization_lineage_names":["Informa"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Disability and Rehabilitation","raw_type":"journal-article"},{"id":"pmid:19479541","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/19479541","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Disability and rehabilitation","raw_type":"Journal Article"},{"id":"pmh:oai:pure.atira.dk:publications/99f80301-a36d-462d-ab6f-65135a6a2a5b","doi":null,"is_oa":false,"landing_page_url":"https://research-repository.uwa.edu.au/en/publications/99f80301-a36d-462d-ab6f-65135a6a2a5b","pdf_url":null,"source":{"id":"https://openalex.org/S4306402523","display_name":"UWA Profiles and Research Repository (University of Western Australia)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I177877127","host_organization_name":"The University of Western Australia","host_organization_lineage":["https://openalex.org/I177877127"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Ager, S, Fyfe, S, Downs, J & Leonard, H 2009, 'Parental experiences of scoliosis management in Rett syndrome', Disability and Rehabilitation, vol. 31, no. 23, pp. 1917-1924. https://doi.org/10.3109/09638280902846392","raw_type":"info:eu-repo/semantics/article"},{"id":"pmh:oai:espace.curtin.edu.au:20.500.11937/26903","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/20.500.11937/26903","pdf_url":null,"source":{"id":"https://openalex.org/S4306401790","display_name":"eSpace (Curtin University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I205640436","host_organization_name":"Curtin University","host_organization_lineage":["https://openalex.org/I205640436"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":0.9789000153541565,"display_name":"Good health and well-being"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[{"id":"https://openalex.org/G3204045372","display_name":null,"funder_award_id":"5R01 HD 043100","funder_id":"https://openalex.org/F4320337611","funder_display_name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development"},{"id":"https://openalex.org/G3404938441","display_name":"Rett syndrome: determinants of outcome and burden","funder_award_id":"5r01hd043100-03","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"}],"funders":[{"id":"https://openalex.org/F4320306812","display_name":"International Rett Syndrome Foundation","ror":"https://ror.org/00e7vz537"},{"id":"https://openalex.org/F4320311853","display_name":"Rett Syndrome Association of Australia","ror":"https://ror.org/047916x45"},{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320334705","display_name":"National Health and Medical Research Council","ror":"https://ror.org/011kf5r70"},{"id":"https://openalex.org/F4320337364","display_name":"National Institute of Child Health and Human Development","ror":"https://ror.org/04byxyr05"},{"id":"https://openalex.org/F4320337611","display_name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","ror":"https://ror.org/04byxyr05"}],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":32,"referenced_works":["https://openalex.org/W3811691","https://openalex.org/W1558530456","https://openalex.org/W1559742681","https://openalex.org/W1965017007","https://openalex.org/W1976348179","https://openalex.org/W1986659938","https://openalex.org/W1992124793","https://openalex.org/W1995221355","https://openalex.org/W1996307306","https://openalex.org/W1996381618","https://openalex.org/W2004283937","https://openalex.org/W2008207330","https://openalex.org/W2015780100","https://openalex.org/W2017564296","https://openalex.org/W2022943899","https://openalex.org/W2023265226","https://openalex.org/W2023593078","https://openalex.org/W2024407324","https://openalex.org/W2052327266","https://openalex.org/W2056360294","https://openalex.org/W2061932200","https://openalex.org/W2099172186","https://openalex.org/W2109125430","https://openalex.org/W2117267545","https://openalex.org/W2119359416","https://openalex.org/W2121468234","https://openalex.org/W2130614276","https://openalex.org/W2138466138","https://openalex.org/W2147092760","https://openalex.org/W2161766695","https://openalex.org/W2464472268","https://openalex.org/W4239393537"],"related_works":["https://openalex.org/W2058245137","https://openalex.org/W1996381618","https://openalex.org/W2509119528","https://openalex.org/W2121468234","https://openalex.org/W1965017007","https://openalex.org/W1780146732","https://openalex.org/W2066446587","https://openalex.org/W2729485901","https://openalex.org/W4292793676","https://openalex.org/W2099172186"],"abstract_inverted_index":{"BACKGROUND:":[0],"Scoliosis":[1],"is":[2],"the":[3,19,43,62,115,118,152,155,166,210],"most":[4],"common":[5],"orthopaedic":[6],"complication":[7],"of":[8,12,22,30,33,45,58,91,95,120,129,154,169,189,204,212,222],"Rett":[9,55,65,218],"syndrome.":[10,56,219],"Parents":[11,57],"affected":[13,135],"individuals":[14],"are":[15],"vital":[16],"partners":[17],"in":[18,54,68,81,88,117,217],"clinical":[20],"management":[21,35,53],"scoliosis":[23,50,85,104,116,195,215,223],"and":[24,51,77,145,171,183],"this":[25,72,82],"study":[26,83],"explored":[27],"parental":[28],"experiences":[29],"various":[31],"aspects":[32],"different":[34],"options.":[36],"METHODS:":[37],"Publicly":[38],"available":[39],"Rettnet":[40],"postings":[41],"informed":[42],"development":[44],"an":[46],"online":[47],"questionnaire":[48],"about":[49,194],"its":[52],"subjects":[59,96,121,130],"who":[60,131],"met":[61],"criteria":[63],"for":[64,103,127],"syndrome":[66],"participated":[67,80],"a":[69],"survey":[70],"using":[71],"questionnaire.":[73],"RESULTS:":[74],"One":[75],"hundred":[76],"eighty":[78],"families":[79,128],"with":[84,97,176,185],"having":[86],"developed":[87],"135":[89],"(75.4%)":[90],"subjects.":[92],"Eighty-four":[93],"(62.2%":[94],"scoliosis)":[98],"had":[99,108,123],"received":[100],"specific":[101],"treatment":[102,216],"while":[105],"51":[106],"(37.8%)":[107],"not.":[109],"Surgery":[110],"was":[111,159,173,199],"perceived":[112,148],"as":[113,149,180],"improving":[114],"majority":[119],"but":[122,157],"considerable":[124],"emotional":[125],"effects":[126,178],"were":[132,147],"less":[133],"severely":[134],"(p":[136,141],"=":[137,142],"0.055)":[138],"or":[139],"older":[140],"0.063).":[143],"Physiotherapy":[144],"bracing":[146,172],"not":[150],"reducing":[151],"progression":[153],"curve,":[156],"physiotherapy":[158],"frequently":[160,174],"reported":[161],"to":[162,165],"be":[163,228],"beneficial":[164],"subject's":[167],"quality":[168],"life":[170],"associated":[175],"side":[177],"such":[179],"decreased":[181],"mobility":[182],"problems":[184],"pressure.":[186],"Only":[187],"half":[188],"respondents":[190],"felt":[191],"that":[192],"information":[193,224],"provided":[196,206],"by":[197,225],"clinicians":[198,226],"adequate.":[200],"CONCLUSIONS:":[201],"The":[202,220],"perspectives":[203],"parents":[205],"useful":[207],"insights":[208],"into":[209],"complexities":[211],"decision-making":[213],"regarding":[214],"provision":[221],"should":[227],"more":[229],"family-centred.":[230]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2024,"cited_by_count":2},{"year":2022,"cited_by_count":1},{"year":2021,"cited_by_count":1},{"year":2017,"cited_by_count":1},{"year":2016,"cited_by_count":2},{"year":2015,"cited_by_count":3},{"year":2014,"cited_by_count":1}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2016-06-24T00:00:00"}
