Health in Down syndrome: creating a conceptual model.
Background: Down syndrome (DS) has a unique medical and psychological profile that could impact how health is defined on three dimensions: physical, social and mental well‐being. Methods: In 2021, we presented our proposed conceptual model to three expert panels, four focus groups of parents of indi...
| Published in: | Journal of Intellectual Disability Research Vol. 67; no. 4; pp. 323 - 352 |
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| Main Authors: | , , , , , , , , |
| Format: | tables/charts Journal Article |
| Published: |
Wiley-Blackwell
Apr2023
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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=162242228&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 162242228 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09642633 EUL jtl: Journal of Intellectual Disability Research issn: 09642633 maglogo: Y pubinfo: dt: Apr2023 vid: 67 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 162242228 161377032 162242228 162242228 10.1111/jir.13007 162242228 ppf: 323 ppct: 29 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Health in Down syndrome: creating a conceptual model. aug: au: Santoro, S. L. Cabrera, M. J. Co, J. P. T. Constantine, M. Haugen, K. Krell, K. Skotko, B. G. Winickoff, J. P. Donelan, K. affil: Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston MA,, USA sug: subj: Down Syndrome Models, Theoretical Genetics Mental Health ab: Background: Down syndrome (DS) has a unique medical and psychological profile that could impact how health is defined on three dimensions: physical, social and mental well‐being. Methods: In 2021, we presented our proposed conceptual model to three expert panels, four focus groups of parents of individuals with DS age 0–21 years and four focus groups of individuals with DS age 13–21 years through videoconferencing technology. Participants gave feedback and discussed the concept of health in DS. Results: Feedback from participants resulted in iterative refinement of our model, retaining the three dimensions of health, and modifying constructs within those dimensions. Experts and parents agreed that individuals with DS have unique health concerns that necessitate the creation and validation of a syndrome‐specific health model. We present key themes that we identified and a final conceptual model of health for individuals with DS. Conclusion: Health in DS is a multi‐dimensional, multi‐construct model focused on relevant constructs of causal and effect indicators. This conceptual model can be used in future research to develop a syndrome‐specific measure of health status. pubtype: Academic Journal doctype: tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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