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 indivi...
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| Veröffentlicht in: | Journal of intellectual disability research 2023-04, Vol.67 (4), p.323-351 |
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| container_title | Journal of intellectual disability research |
| container_volume | 67 |
| creator | Santoro, S. L. Cabrera, M. J. Co, J. P. T. Constantine, M. Haugen, K. Krell, K. Skotko, B. G. Winickoff, J. P. Donelan, K. |
| description | 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. |
| doi_str_mv | 10.1111/jir.13007 |
| format | Article |
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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.</description><identifier>ISSN: 0964-2633</identifier><identifier>ISSN: 1365-2788</identifier><identifier>EISSN: 1365-2788</identifier><identifier>DOI: 10.1111/jir.13007</identifier><identifier>PMID: 36650105</identifier><language>eng</language><publisher>England: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; Adult ; Child ; Child, Preschool ; Conceptual models ; Down syndrome ; Down Syndrome - psychology ; Focus Groups ; genetics ; health inequities ; Health problems ; Health status ; Humans ; Infant ; Infant, Newborn ; mental health ; methodology in research ; Parents ; quality of life ; Video conferencing ; Videoconferencing ; Young Adult</subject><ispartof>Journal of intellectual disability research, 2023-04, Vol.67 (4), p.323-351</ispartof><rights>2023 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.</rights><rights>2023 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4087-458e3a2efb6b79ea7350f6c1587add6e27d4be5eda5e756f88cd5639f05a5a6a3</citedby><cites>FETCH-LOGICAL-c4087-458e3a2efb6b79ea7350f6c1587add6e27d4be5eda5e756f88cd5639f05a5a6a3</cites><orcidid>0000-0002-4172-0288 ; 0000-0002-5232-9882</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fjir.13007$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fjir.13007$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,776,780,881,1411,27903,27904,30978,45553,45554</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36650105$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Santoro, S. L.</creatorcontrib><creatorcontrib>Cabrera, M. J.</creatorcontrib><creatorcontrib>Co, J. P. T.</creatorcontrib><creatorcontrib>Constantine, M.</creatorcontrib><creatorcontrib>Haugen, K.</creatorcontrib><creatorcontrib>Krell, K.</creatorcontrib><creatorcontrib>Skotko, B. G.</creatorcontrib><creatorcontrib>Winickoff, J. P.</creatorcontrib><creatorcontrib>Donelan, K.</creatorcontrib><title>Health in Down syndrome: creating a conceptual model</title><title>Journal of intellectual disability research</title><addtitle>J Intellect Disabil Res</addtitle><description>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.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Conceptual models</subject><subject>Down syndrome</subject><subject>Down Syndrome - psychology</subject><subject>Focus Groups</subject><subject>genetics</subject><subject>health inequities</subject><subject>Health problems</subject><subject>Health status</subject><subject>Humans</subject><subject>Infant</subject><subject>Infant, Newborn</subject><subject>mental health</subject><subject>methodology in research</subject><subject>Parents</subject><subject>quality of life</subject><subject>Video conferencing</subject><subject>Videoconferencing</subject><subject>Young Adult</subject><issn>0964-2633</issn><issn>1365-2788</issn><issn>1365-2788</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp1kcFO3DAQhi1EVZZtD7xAFYkLPQTsOB7HPSAhCuwiJKSqPVteZwJZJfbWTkD79rgsrCgSc5nDfPo0Mz8hB4wes1QnyzYcM06p3CETxkHkhayqXTKhCsq8AM73yH6MS0opsBI-kz0OICijYkLKGZpuuM9al_30jy6La1cH3-OPzAY0Q-vuMpNZ7yyuhtF0We9r7L6QT43pIn596VPy5_Li9_ksv7m9mp-f3eS2pJXMS1EhNwU2C1hIhUZyQRuwTFTS1DVgIetygQJrI1AKaKrK1gK4aqgwwoDhU3K68a7GRY-1RTcE0-lVaHsT1tqbVv8_ce29vvMPWilVFIolwdGLIPi_I8ZB92202HXGoR-jLiSAZEqCSujhO3Tpx-DSeYmq0tuAsSJR3zeUDT7GgM12GUb1vyx0ykI_Z5HYb2-335Kvz0_AyQZ4bDtcf2zS1_NfG-UTHj2S6g</recordid><startdate>202304</startdate><enddate>202304</enddate><creator>Santoro, S. L.</creator><creator>Cabrera, M. J.</creator><creator>Co, J. P. T.</creator><creator>Constantine, M.</creator><creator>Haugen, K.</creator><creator>Krell, K.</creator><creator>Skotko, B. G.</creator><creator>Winickoff, J. P.</creator><creator>Donelan, K.</creator><general>Wiley Subscription Services, Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QJ</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-4172-0288</orcidid><orcidid>https://orcid.org/0000-0002-5232-9882</orcidid></search><sort><creationdate>202304</creationdate><title>Health in Down syndrome: creating a conceptual model</title><author>Santoro, S. L. ; Cabrera, M. J. ; Co, J. P. T. ; Constantine, M. ; Haugen, K. ; Krell, K. ; Skotko, B. G. ; Winickoff, J. P. ; Donelan, K.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4087-458e3a2efb6b79ea7350f6c1587add6e27d4be5eda5e756f88cd5639f05a5a6a3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Child</topic><topic>Child, Preschool</topic><topic>Conceptual models</topic><topic>Down syndrome</topic><topic>Down Syndrome - psychology</topic><topic>Focus Groups</topic><topic>genetics</topic><topic>health inequities</topic><topic>Health problems</topic><topic>Health status</topic><topic>Humans</topic><topic>Infant</topic><topic>Infant, Newborn</topic><topic>mental health</topic><topic>methodology in research</topic><topic>Parents</topic><topic>quality of life</topic><topic>Video conferencing</topic><topic>Videoconferencing</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Santoro, S. L.</creatorcontrib><creatorcontrib>Cabrera, M. J.</creatorcontrib><creatorcontrib>Co, J. P. T.</creatorcontrib><creatorcontrib>Constantine, M.</creatorcontrib><creatorcontrib>Haugen, K.</creatorcontrib><creatorcontrib>Krell, K.</creatorcontrib><creatorcontrib>Skotko, B. G.</creatorcontrib><creatorcontrib>Winickoff, J. P.</creatorcontrib><creatorcontrib>Donelan, K.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of intellectual disability research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Santoro, S. L.</au><au>Cabrera, M. J.</au><au>Co, J. P. T.</au><au>Constantine, M.</au><au>Haugen, K.</au><au>Krell, K.</au><au>Skotko, B. G.</au><au>Winickoff, J. P.</au><au>Donelan, K.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health in Down syndrome: creating a conceptual model</atitle><jtitle>Journal of intellectual disability research</jtitle><addtitle>J Intellect Disabil Res</addtitle><date>2023-04</date><risdate>2023</risdate><volume>67</volume><issue>4</issue><spage>323</spage><epage>351</epage><pages>323-351</pages><issn>0964-2633</issn><issn>1365-2788</issn><eissn>1365-2788</eissn><abstract>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.</abstract><cop>England</cop><pub>Wiley Subscription Services, Inc</pub><pmid>36650105</pmid><doi>10.1111/jir.13007</doi><tpages>29</tpages><orcidid>https://orcid.org/0000-0002-4172-0288</orcidid><orcidid>https://orcid.org/0000-0002-5232-9882</orcidid></addata></record> |
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| ispartof | Journal of intellectual disability research, 2023-04, Vol.67 (4), p.323-351 |
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| source | MEDLINE; Wiley Online Library Journals Frontfile Complete; Applied Social Sciences Index & Abstracts (ASSIA); Education Source |
| subjects | Adolescent Adult Child Child, Preschool Conceptual models Down syndrome Down Syndrome - psychology Focus Groups genetics health inequities Health problems Health status Humans Infant Infant, Newborn mental health methodology in research Parents quality of life Video conferencing Videoconferencing Young Adult |
| title | Health in Down syndrome: creating a conceptual model |
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