Talking with children and young people with 22q11DS about their mental health, behaviour, learning and communication.
Background: 22q11DS11.2 deletion syndrome (22q11DS) is a complex multisystem syndrome characterized by physical abnormalities, psychiatric comorbidities and cognitive deficits. The views of children and young people (CYP) about the challenges associated with their mental health, behaviour, learning...
| Published in: | Child: Care, Health & Development Vol. 49; no. 1; pp. 90 - 106 |
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| Main Authors: | , , , |
| Format: | research tables/charts Journal Article |
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Wiley-Blackwell
Jan2023
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=160783837&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 160783837 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 03051862 6NX jtl: Child: Care, Health & Development issn: 03051862 maglogo: Y pubinfo: dt: Jan2023 vid: 49 iid: 1 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 160783837 156425879 160783837 160783837 10.1111/cch.13013 160783837 ppf: 90 ppct: 16 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Talking with children and young people with 22q11DS about their mental health, behaviour, learning and communication. aug: au: Wray, Jo Abrines Jaume, Neus Oulton, Kate Sell, Debbie affil: 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 sug: subj: 22q11 Deletion Syndrome Psychosocial Factors Persons with Disabilities Mental Health Child Behavior Learning Communication Attitude to Illness Evaluation Human Child Adolescence Multimethod Studies Interviews Surveys Young Adult Adult Thematic Analysis Nonparametric Statistics Emotions Child: 6-12 years Adolescent: 13-18 years Adult: 19-44 years ab: Background: 22q11DS11.2 deletion syndrome (22q11DS) is a complex multisystem syndrome characterized by physical abnormalities, psychiatric comorbidities and cognitive deficits. 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. Methods: A three‐phase mixed‐methods study was undertaken, involving interviews with CYP with 22q11DS, a follow‐up survey for those aged 11–25 years 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‐parametric statistics were used to analyse survey data. Results: The interviews (n = 13) and survey (n = 32) 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‐thirds 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. Conclusions: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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