{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T03:07:00Z","timestamp":1788923220826,"version":"build-2803163510"},"reference-count":53,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T00:00:00Z","timestamp":1783468800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T00:00:00Z","timestamp":1783468800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100006041","name":"Innovate UK","doi-asserted-by":"publisher","award":["KTP11189"],"award-info":[{"award-number":["KTP11189"]}],"id":[{"id":"10.13039\/501100006041","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Children with rare genetic conditions are more likely to experience neurodevelopmental challenges requiring additional educational support. Although the governments in the United Kingdom and Ireland are committed to providing such support, securing it can be challenging for parents, with potential adverse implications for their mental health. Children who do not receive the educational support they need are at greater risk of poorer educational outcomes. This study aimed to remedy the lack of empirical data about the experiences of parents of children with rare genetic conditions in obtaining educational support and how these experiences affect them and their families.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>Sixteen mothers were interviewed about their experiences of securing educational support for their child(ren) with a rare genetic condition. Qualitative data were collected during the Covid\u201019 pandemic. Participants reflected on experiences both prior to and during this period. Data were analysed using Framework Analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five main themes were identified: (1) fighting for access into \u2018the system\u2019, (2) a lengthy process to secure support, (3) factors enabling access, (4) challenges after securing support and (5) impact of experience on mothers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Accessing educational support was challenging, lengthy and stressful, with negative effects on mothers' mental health and relationships with wider family members. Parents of children with rare genetic conditions may face additional challenges securing support.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jir.70141","type":"journal-article","created":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T02:46:52Z","timestamp":1783565212000},"page":"1063-1076","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the Family"],"prefix":"10.1111","volume":"70","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3039-1113","authenticated-orcid":false,"given":"Lowri","family":"O'Donovan","sequence":"first","affiliation":[{"name":"Centre for Neuropsychiatric Genetics and Genomics &amp; Neuroscience and Mental Health Innovation Institute, Division of Psychological Medicine and Clinical Neurosciences Cardiff University  Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne\u2010Marie","family":"Burn","sequence":"additional","affiliation":[{"name":"Department of Psychiatry University of Cambridge  Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tamsin","family":"Ford","sequence":"additional","affiliation":[{"name":"Department of Psychiatry University of Cambridge  Cambridge UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marianne","family":"van den Bree","sequence":"additional","affiliation":[{"name":"Centre for Neuropsychiatric Genetics and Genomics &amp; Neuroscience and Mental Health Innovation Institute, Division of Psychological Medicine and Clinical Neurosciences Cardiff University  Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,8]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13229\u2010021\u201000426\u2010w"},{"key":"e_1_2_11_3_1","unstructured":"Alghrani A. andS.Byrne.2020. \u201cThe Impact of COVID\u201019 on Education and Children's Services.\u201d Retrieved October 22 2025.https:\/\/committees.parliament.uk\/writtenevidence\/5816\/html\/."},{"key":"e_1_2_11_4_1","unstructured":"Atkinson A. U.Paper andE.Shore.2025. \u201cAddressing the SEND Crisis: Implementing What Works in a Worsening Crisis.\u201d N8 Research Partnership.https:\/\/www.n8research.org.uk\/view\/15721\/CotN_SEND_Report_Update.pdf."},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.2020.38"},{"key":"e_1_2_11_6_1","unstructured":"Baser A. 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L.Bradley H.Crawford P.Hannant H.Johnson andA.Thompson.2017. \u201cSEN Support: A Rapid Evidence Assessment.\u201dhttps:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/628630\/DfE_SEN_Support_REA_Report.pdf."},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1176\/appi.ajp.2020.20010015"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41398\u2010022\u201002296\u2010z"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.gde.2020.12.012"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/08856257.2021.1872844"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/1362361315573636"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.28078"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291720002330"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1017\/s0033291719003210"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1186\/s11689\u2010019\u20109271\u20103"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamapsychiatry.2015.2123"},{"key":"e_1_2_11_21_1","unstructured":"Department 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