{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T13:33:24Z","timestamp":1791293604469,"version":"4.1.0"},"reference-count":39,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2022,4,22]],"date-time":"2022-04-22T00:00:00Z","timestamp":1650585600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100000386","name":"Burdett Trust for Nursing","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000386","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2023,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>22q11DS11.2 deletion syndrome (22q11DS) is a complex multisystem syndrome characterized by physical abnormalities, psychiatric comorbidities and cognitive deficits.<\/jats:p><jats:p>The views of children and young people (CYP) about the challenges associated with their mental health, behaviour, learning and communication difficulties have not been reported. The aim of this study was to address this gap and to understand whether they had help and support with these and their views of this.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A three\u2010phase mixed\u2010methods study was undertaken, involving interviews with CYP with 22q11DS, a follow\u2010up survey for those aged 11\u201325\u2009years and a stakeholder workshop at which CYP presented their views of living with 22q11DS to health professionals and parents. Interview transcripts were thematically analysed, and non\u2010parametric statistics were used to analyse survey data.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The interviews (<jats:italic>n<\/jats:italic>\u00a0=\u200913) and survey (<jats:italic>n<\/jats:italic>\u00a0=\u200932) indicated a mixed picture, with some CYP not reporting ongoing problems; others who had problems received help but a sizeable proportion had unmet needs and wanted to receive help. Two\u2010thirds reported often experiencing negative feelings, and almost half had difficulties with social interactions. Family members were the main sources of support, with teaching assistants identified as an important support at school.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The emotional impact of 22q11DS on CYP can be significant: They often do not understand the consequences of having 22q11DS and are frequently not given strategies to understand and manage their feelings, behaviour or problems. This leads to a range of emotions that manifest in different ways at home and at school. CYP are able to talk about the impact of different aspects of 22q11DS on them, facilitated by the use of creative methods, but they differ in how the condition affects them and their perceptions about that. It is imperative that CYP themselves are asked about their experiences, feelings and needs to ensure tailoring of interventions to their individual requirements.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.13013","type":"journal-article","created":{"date-parts":[[2022,4,11]],"date-time":"2022-04-11T10:45:00Z","timestamp":1649673900000},"page":"90-105","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Talking with children and young people with 22q11DS about their mental health, behaviour, learning and communication"],"prefix":"10.1111","volume":"49","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4769-1211","authenticated-orcid":false,"given":"Jo","family":"Wray","sequence":"first","affiliation":[{"name":"Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Neus","family":"Abrines Jaume","sequence":"additional","affiliation":[{"name":"Healios  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5778-3849","authenticated-orcid":false,"given":"Kate","family":"Oulton","sequence":"additional","affiliation":[{"name":"Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2488-5881","authenticated-orcid":false,"given":"Debbie","family":"Sell","sequence":"additional","affiliation":[{"name":"Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,4,22]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12280"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12457"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/mgg3.1153"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.psychres.2017.04.019"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/WCO.0b013e328352dd58"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.186.2.115"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1176\/appi.ajp.160.9.1580"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2011.02.039"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11689-010-9069-9"},{"key":"e_1_2_8_11_1","volume-title":"Successful qualitative research: A practical guide for beginners","author":"Braun V.","year":"2013"},{"key":"e_1_2_8_12_1","unstructured":"Chief Medical Officer. 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