{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,9]],"date-time":"2026-06-09T13:16:50Z","timestamp":1781011010689,"version":"3.54.1"},"reference-count":61,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T00:00:00Z","timestamp":1685664000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["K23HD100568"],"award-info":[{"award-number":["K23HD100568"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2023,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Down syndrome (DS) has a unique medical and psychological profile. To date, few studies have asked individuals with DS about their views of health, and fewer have explored the impact of COVID\u201019 on the health of individuals with DS and their families. We used a mixed methods approach including two studies on the health of individuals with DS and their parents conducted during the COVID\u201019 pandemic: (1) eight virtual focus groups, comprised of 20 parents and 8 individuals with DS to obtain participants' views of health, and (2) a 20\u2010item questionnaire on health care experience of patients with DS who are African American or come from primarily Spanish\u2010speaking homes. Focus group transcripts were coded using a hybrid inductive\/deductive framework and thematically analyzed using the Framework Method. This questionnaire included questions regarding the impact of COVID\u201019 on caregivers and their loved ones with DS; responses to these questions were summarized using descriptive statistics. Individuals with DS discussed the impact of the COVID\u201019 pandemic on their physical and social health including masking, online learning, and online communication with friends and family. Parents of individuals with DS discussed how the COVID\u201019 pandemic negatively impacted their child's physical, social, and mental health, as a result of virtual schooling and decreased socialization. There were unexpected positives of the pandemic such as improved hygiene and eased scheduling with telehealth visits. Caregivers noted COVID\u201019 impacted their own anxiety, employment, and other domains that have potential ripple effects on the health of their children. The COVID\u201019 pandemic had a pervasive impact on the mental health and wellness of caregivers as well as the physical, social, and mental health of individuals with DS.<\/jats:p>","DOI":"10.1002\/ajmg.a.63233","type":"journal-article","created":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T14:01:27Z","timestamp":1685714487000},"page":"2045-2056","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Views on the impact of the <scp>COVID<\/scp>\u201019 pandemic on health in people with Down syndrome from diverse backgrounds"],"prefix":"10.1002","volume":"191","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4172-0288","authenticated-orcid":false,"given":"Stephanie L.","family":"Santoro","sequence":"first","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Baker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jasmine M.","family":"Blake","sequence":"additional","affiliation":[{"name":"Departments of Internal Medicine and Pediatrics Icahn School of Medicine at Mount Sinai  New York New York United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5178-275X","authenticated-orcid":false,"given":"Maria J.","family":"Cabrera","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelli","family":"Caughman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4423-9721","authenticated-orcid":false,"given":"Jeanhee","family":"Chung","sequence":"additional","affiliation":[{"name":"Laboratory of Computer Science Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Cullen","sequence":"additional","affiliation":[{"name":"Massachusetts Down Syndrome Congress  Burlington Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen","family":"Gallagher","sequence":"additional","affiliation":[{"name":"Massachusetts Down Syndrome Congress  Burlington Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelsey","family":"Haugen","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roxanne","family":"Hoke\u2010Chandler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7905-871X","authenticated-orcid":false,"given":"Kavita","family":"Krell","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julius","family":"Maina","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diana","family":"McLuckie","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4542-5227","authenticated-orcid":false,"given":"Vanessa L.","family":"Merker","sequence":"additional","affiliation":[{"name":"Department of Neurology and Cancer Center Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carie","family":"Michael","sequence":"additional","affiliation":[{"name":"Mongan Institute, Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"O'Neill","sequence":"additional","affiliation":[{"name":"LuMind IDSC Down Syndrome Foundation  Burlington Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angeles","family":"Pe\u00f1a","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Oregon Health &amp; Science University  Portland Oregon United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"Jr.","given":"Albert","family":"Pless","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dina","family":"Royal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Slape","sequence":"additional","affiliation":[{"name":"LuMind IDSC Down Syndrome Foundation  Burlington Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noemi Alice","family":"Spinazzi","sequence":"additional","affiliation":[{"name":"Division of Primary Care, Department of Pediatrics University of California San Francisco Benioff Children's Hospital Oakland  Oakland California United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Torres","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carlos G.","family":"Torres","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5232-9882","authenticated-orcid":false,"given":"Brian G.","family":"Skotko","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts United States"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts United States"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,6,2]]},"reference":[{"key":"e_1_2_9_2_1","unstructured":"About Gigi's Playhouse. IncGigis Playhouse. Accessed August 1 2022https:\/\/gigisplayhouse.org\/about-us\/"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2018.05060"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12933"},{"key":"e_1_2_9_5_1","unstructured":"American Academy of Pediatrics. (2023).Children and COVID\u201019: State\u2010Level Data Report. Published January 26.https:\/\/www.aap.org\/en\/pages\/2019\u2010novel\u2010coronavirus\u2010covid\u201019\u2010infections\/children\u2010and\u2010covid\u201019\u2010state\u2010level\u2010data\u2010report\/"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.3390\/nu12061583"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1037\/0021-9010.84.3.437"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1590\/1413-812320172211.31102016"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1037\/0033-2909.117.3.497"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-0225"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra1706537"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejmg.2022.104550"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1017\/ipm.2020.45"},{"key":"e_1_2_9_14_1","unstructured":"COVID\u201019 and Down Syndrome T21RS survey. (2020. Accessed August 19 2020).Report May 27 2020. T21RS survey. Published May 27.https:\/\/www.t21rs.org\/results\u2010from\u2010covid\u201019\u2010and\u2010down\u2010syndrome\u2010survey\/"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/07853890.2021.1922743"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/1475-6773.12117"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/1044207314539011"},{"key":"e_1_2_9_18_1","unstructured":"GiGi's Playhouse Down Syndrome Achievement Centers. (2020).GiGi's at Home bringing free virtual programming to individuals with special needs. Published April.https:\/\/www.prnewswire.com\/news\u2010releases\/gigis\u2010at\u2010home\u2010bringing\u2010free\u2010virtual\u2010programming\u2010to\u2010individuals\u2010with\u2010special\u2010needs\u2010301035112.html?tc=eml_cleartime"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.2016632118"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10935-020-00588-y"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12791"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2022.101278"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/1468794120976072"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1101\/2020.11.03.20225359"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eclinm.2021.100769"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.12669\/pjms.36.5.3088"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph18126178"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.91.11.4997"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.63069"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1097\/MRR.0b013e3283634e9c"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(20)30367-6"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41582-018-0132-6"},{"key":"e_1_2_9_36_1","doi-asserted-by":"publisher","DOI":"10.2196\/23701"},{"key":"e_1_2_9_37_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.27.2.393"},{"key":"e_1_2_9_38_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10488-010-0314-z"},{"key":"e_1_2_9_39_1","doi-asserted-by":"publisher","DOI":"10.1080\/14656566.2018.1529167"},{"key":"e_1_2_9_40_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00787-021-01856-w"},{"key":"e_1_2_9_41_1","doi-asserted-by":"publisher","DOI":"10.1093\/tropej\/fmaa122"},{"key":"e_1_2_9_42_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2021.2482"},{"key":"e_1_2_9_43_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0019473"},{"key":"e_1_2_9_44_1","doi-asserted-by":"publisher","DOI":"10.1352\/0895-8017(2004)109<165:IIPFIA>2.0.CO;2"},{"key":"e_1_2_9_45_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-1704"},{"key":"e_1_2_9_46_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2020.577684"},{"key":"e_1_2_9_47_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.13007"},{"key":"e_1_2_9_48_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.13065"},{"key":"e_1_2_9_49_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.61924"},{"key":"e_1_2_9_50_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.13013"},{"key":"e_1_2_9_51_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31876"},{"key":"e_1_2_9_52_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2022.10.021"},{"key":"e_1_2_9_53_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13052-022-01211-y"},{"key":"e_1_2_9_54_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-022-05450-0"},{"key":"e_1_2_9_55_1","doi-asserted-by":"publisher","DOI":"10.1017\/dmp.2013.22"},{"key":"e_1_2_9_56_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11524-011-9587-0"},{"key":"e_1_2_9_57_1","doi-asserted-by":"publisher","DOI":"10.1093\/cid\/ciaa815"},{"key":"e_1_2_9_58_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2021.101184"},{"key":"e_1_2_9_59_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12196"},{"key":"e_1_2_9_60_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2020.578686"},{"key":"e_1_2_9_61_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12811"},{"key":"e_1_2_9_62_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2021-053418"}],"container-title":["American Journal of Medical Genetics Part A"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.a.63233","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,23]],"date-time":"2023-08-23T12:22:30Z","timestamp":1692793350000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.a.63233"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,6,2]]},"references-count":61,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2023,8]]}},"alternative-id":["10.1002\/ajmg.a.63233"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.a.63233","archive":["Portico"],"relation":{},"ISSN":["1552-4825","1552-4833"],"issn-type":[{"value":"1552-4825","type":"print"},{"value":"1552-4833","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,6,2]]},"assertion":[{"value":"2023-02-17","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-04-27","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-06-02","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}