{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,9]],"date-time":"2026-03-09T10:44:45Z","timestamp":1773053085192,"version":"3.50.1"},"reference-count":53,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,3,3]],"date-time":"2025-03-03T00:00:00Z","timestamp":1740960000000},"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":["J intellect Disabil Res"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of general populations with IDD but these may not reflect the barriers experienced by individuals with rare disorders such as Rett syndrome (RTT). There are also few peer\u2010reviewed studies in the Australian context exploring barriers to dental care access for patients living with a disability. This qualitative study explored caregivers' perceptions and experiences regarding oral health and access to dental care for those with RTT in Australia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Parents of 31 individuals with a confirmed <jats:italic>MECP2<\/jats:italic> mutation were sampled purposively from the <jats:italic>Australian Rett Syndrome Database<\/jats:italic>. Interview questions were based on earlier studies used in other disability populations and queried identification and management of dental pain and influence of other comorbidities in their child's oral care. Interviews were audio\u2010recorded, transcribed and analysed using NVivo (Version 12 Plus). Directed content analysis was used to code data to a framework constructed from a literature review of factors affecting access to professional oral healthcare systems and factors affecting access to optimal at\u2010home oral care in disability.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The most frequently cited barriers to professional dental care were dentist\u2010related, while caregiver related financial barriers were cited by a minority of families. Dentist\u2010related financial barriers were not present in these data. Most factors affecting access to optimal at\u2010home oral care coded to the existing framework, with further enablers identified under training for the caregiver or parent.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The findings of this study provide a point of reference to understand factors affecting provision of at\u2010home dental care and professional services to enable optimal oral health in RTT. Future research could explore the provision of targeted oral health information on RTT to carers and clinicians.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jir.13222","type":"journal-article","created":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T20:54:54Z","timestamp":1741726494000},"page":"403-416","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Access to Oral Healthcare in Individuals With Rett Syndrome: A Qualitative Study of Parent Perspectives"],"prefix":"10.1111","volume":"69","author":[{"given":"Yvonne\u00a0Yee\u00a0Lok","family":"Lai","sequence":"first","affiliation":[{"name":"UQ Oral Health Centre University of Queensland School of Dentistry  Brisbane Queensland Australia"},{"name":"Child Disability The Kids Research Institute Australia  Perth Western Australia Australia"},{"name":"Paediatric Dental Department Women's and Children's Hospital  Adelaide South Australia Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sobia","family":"Zafar","sequence":"additional","affiliation":[{"name":"UQ Oral Health Centre University of Queensland School of Dentistry  Brisbane Queensland Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helen\u00a0Margaret","family":"Leonard","sequence":"additional","affiliation":[{"name":"Child Disability The Kids Research Institute Australia  Perth Western Australia Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laurence\u00a0James","family":"Walsh","sequence":"additional","affiliation":[{"name":"UQ Oral Health Centre University of Queensland School of Dentistry  Brisbane Queensland Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jenny\u00a0Anne","family":"Downs","sequence":"additional","affiliation":[{"name":"Child Disability The Kids Research Institute Australia  Perth Western Australia Australia"},{"name":"Curtin School of Allied Health Curtin University  Perth Western Australia Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,3,3]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1754-4505.2011.00211.x"},{"key":"e_1_2_10_3_1","first-page":"18","article-title":"Dentist\u2010Related Barriers to Treatment in a Group of Individuals With Down Syndrome in France: Implications for Dental Education","volume":"2","author":"Allison P. J.","year":"2001","journal-title":"Journal of Disability and Oral Health"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/13810"},{"key":"e_1_2_10_5_1","first-page":"447","article-title":"Transitioning From Pediatric to Adult Dental Care for Adolescents With Special Health Care Needs: Dentist Perspectives\u2014Part Two","volume":"37","author":"Bayarsaikhan Z.","year":"2015","journal-title":"Pediatric Dentistry"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000304752.50773.ec"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2012.34"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1155\/2014\/238764"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/adj.12197"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.4034\/PBOCI.2011.114.21"},{"key":"e_1_2_10_11_1","unstructured":"Casamassimo P. S.2014. \u201cChildren With Special Health Care Needs: Patient Professional and Systems Issues.\u201d Interfaces Project Proceedings. Children's Dental Health Project."},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12415"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-020-08550-7"},{"key":"e_1_2_10_14_1","unstructured":"Commonwealth of Australia.2023a. \u201cFifth Review of the Dental Benefits Act 2008.\u201d"},{"key":"e_1_2_10_15_1","unstructured":"Commonwealth of Australia.2023b. \u201cRoyal Commission Into Violence Abuse Neglect and Exploitation of People With Disability: Final Report.\u201dCommonwealth of Australia."},{"key":"e_1_2_10_16_1","unstructured":"Commonwealth of Australia.2023c. \u201cSenate Select Committee Into the Provision of and Access to Dental Services in Australia.\u201d"},{"key":"e_1_2_10_17_1","first-page":"98","article-title":"Improving Oral Health for Individuals With Special Health Care Needs","volume":"29","author":"Crall J. J.","year":"2007","journal-title":"Pediatric Dentistry"},{"key":"e_1_2_10_18_1","first-page":"442","article-title":"Transitioning From Pediatric to Adult Dental Care for Adolescents With Special Health Care Needs: Adolescent and Parent Perspectives\u2014Part One","volume":"37","author":"Cruz S.","year":"2015","journal-title":"Pediatric Dentistry"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2788.2000.00252.x"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1155\/2020\/9074618"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1754-4505.2008.00022.x"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33314"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0000000000001399"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bdj.4801538"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1203\/PDR.0b013e3182242461"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2014.11.002"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0300-5712(99)00052-4"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/0022034519847953"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-011-1362-2"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/scd.12712"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12903\u2010018\u20100651\u2010y"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12834"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1111\/odi.13924"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.3003"},{"key":"e_1_2_10_35_1","first-page":"8","article-title":"The Prevalence and Incidence of Rett Syndrome in Australia","volume":"6","author":"Leonard H.","year":"1996","journal-title":"European Child & Adolescent Psychiatry"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2016.186"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rasd.2008.12.004"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-019-6590-y"},{"key":"e_1_2_10_39_1","first-page":"29","article-title":"Unmet Dental Needs and Barriers to Care for Children With Significant Special Health Care Needs","volume":"33","author":"Nelson L. P.","year":"2011","journal-title":"Pediatric Dentistry"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1002\/ana.22124"},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.14219\/jada.archive.2010.0080"},{"key":"e_1_2_10_42_1","doi-asserted-by":"publisher","DOI":"10.15600\/2238-1236\/fol.v27n1p21-28"},{"key":"e_1_2_10_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2016.09.020"},{"key":"e_1_2_10_44_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1834-7819.2009.01120.x"},{"key":"e_1_2_10_45_1","first-page":"1","article-title":"Access to Dental Public Services by Disabled Persons","volume":"15","author":"Rocha L. L.","year":"2015","journal-title":"BMC Oral Health"},{"key":"e_1_2_10_46_1","doi-asserted-by":"publisher","DOI":"10.22452\/adum.vol25no2.5"},{"key":"e_1_2_10_47_1","first-page":"171","article-title":"Oral Health and Children With an Intellectual Disability: A Focus Group Study of Parent Issues and Perceptions","volume":"11","author":"Slack\u2010Smith L.","year":"2010","journal-title":"Journal of Disability and Oral Health"},{"key":"e_1_2_10_48_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40258-017-0338-6"},{"key":"e_1_2_10_49_1","first-page":"387","article-title":"Oral Care Experiences and Challenges in Children With Autism Spectrum Disorders","volume":"34","author":"Stein L. I.","year":"2012","journal-title":"Pediatric Dentistry"},{"key":"e_1_2_10_50_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.22115"},{"key":"e_1_2_10_51_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_10_52_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jds.2012.09.012"},{"key":"e_1_2_10_53_1","doi-asserted-by":"publisher","DOI":"10.1111\/scd.12110"},{"key":"e_1_2_10_54_1","volume-title":"Global Oral Health Status Report: Towards Universal Health Coverage for Oral Health by 2030","author":"World Health Organization","year":"2022"}],"container-title":["Journal of Intellectual Disability Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jir.13222","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,4]],"date-time":"2025-04-04T23:02:34Z","timestamp":1743807754000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jir.13222"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,3,3]]},"references-count":53,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2025,5]]}},"alternative-id":["10.1111\/jir.13222"],"URL":"https:\/\/doi.org\/10.1111\/jir.13222","archive":["Portico"],"relation":{},"ISSN":["0964-2633","1365-2788"],"issn-type":[{"value":"0964-2633","type":"print"},{"value":"1365-2788","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,3,3]]},"assertion":[{"value":"2023-08-07","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-02-04","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-03-03","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}