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dc.contributor.authorMengoni, Silvana
dc.contributor.authorRedman, Sandra
dc.date.accessioned2019-10-02T00:16:26Z
dc.date.available2019-10-02T00:16:26Z
dc.date.issued2019-09-23
dc.identifier.citationMengoni , S & Redman , S 2019 , ' Health monitoring of young children with Down syndrome: A parent-report study ' , British Journal of Learning Disabilities , pp. 9 . https://doi.org/10.1111/bld.12296
dc.identifier.issn1354-4187
dc.identifier.otherPURE: 17252256
dc.identifier.otherPURE UUID: 33b4b2d2-eb00-45cb-b73c-b52eb084b2c0
dc.identifier.otherScopus: 85073948803
dc.identifier.urihttp://hdl.handle.net/2299/21711
dc.description© 2019 John Wiley & Sons Ltd.
dc.description.abstractBackground: Children with Down syndrome have an increased risk of serious health conditions, particularly in early childhood. Published guidelines promote the identification and monitoring of health issues and adherence could reduce health inequalities, yet there is limited research about the extent to which health monitoring occurs as recommended. This study aimed to investigate the health monitoring of children with Down syndrome aged 0–5 years in the UK. Materials and Methods: Twenty-four parents of children with Down syndrome with a mean age of 32 months (10–65 months) participated. They completed a questionnaire about their child's healthcare usage, diagnoses of health conditions and whether health checks had been completed at birth and since birth. The results of the questionnaires were charted and compared to the schedule of checks produced by the Down Syndrome Medical Interest Group UK. Results: Children with Down syndrome had high usage of health services and reported significant health issues. There was high adherence to published guidelines for the majority of health checks at birth, although 38% of children had not received all recommended checks. Not all health domains had been monitored since birth for all children, particularly breathing and blood (excluding thyroid). With the potential exception of sleep apnoea, diagnosed conditions appeared to be monitored. Conclusions: This study suggests that health monitoring after birth and screening for nondiagnosed health conditions is variable for children with Down syndrome. Further research should examine convergence of these findings with medical records and clinicians' experiences across the UK.en
dc.format.extent1
dc.language.isoeng
dc.relation.ispartofBritish Journal of Learning Disabilities
dc.rightsEmbargoed
dc.subjectcare management
dc.subjectDown syndrome
dc.subjecthealth and social care policy and practice
dc.subjectlearning (intellectual) disabilities
dc.subjectPediatrics
dc.subjectPhychiatric Mental Health
dc.titleHealth monitoring of young children with Down syndrome: A parent-report studyen
dc.contributor.institutionDepartment of Psychology and Sports Sciences
dc.contributor.institutionCentre for Health Services and Clinical Research
dc.contributor.institutionBasic and Clinical Science Unit
dc.contributor.institutionSchool of Life and Medical Sciences
dc.description.statusPeer reviewed
dc.date.embargoedUntil2021-08-15
dc.identifier.urlhttp://www.scopus.com/inward/record.url?scp=85073948803&partnerID=8YFLogxK
dc.relation.schoolSchool of Life and Medical Sciences
dc.description.versiontypeFinal Accepted Version
dcterms.dateAccepted2019-09-23
rioxxterms.versionAM
rioxxterms.versionofrecordhttps://doi.org/10.1111/bld.12296
rioxxterms.licenseref.uriOther
rioxxterms.licenseref.startdate2021-08-15
rioxxterms.typeJournal Article/Review
herts.preservation.rarelyaccessedtrue
herts.date.embargo2021-08-15
herts.rights.accesstypeEmbargoed


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