{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T21:39:34Z","timestamp":1780349974156,"version":"3.54.1"},"reference-count":25,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2022,12,9]],"date-time":"2022-12-09T00:00:00Z","timestamp":1670544000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpose of this study was to identify and describe the barriers and facilitators that such patients and their caregivers face when accessing healthcare. We gathered data in three ways: focus groups with caregivers, a national survey completed by caregivers, and in\u2010depth interviews with primary care providers. Many caregivers and primary care physicians felt that patients with DS who are Black, African American, of African descent, or of mixed race receive a lower quality of medical care than their white counterparts with DS. Caregivers mentioned feeling tired of being reminded by the medical community about their race and wanting acknowledgment that raising a child with DS can be hard at times. Many felt that the medical community's conscious and unconscious racial biases do negatively impact the care of their loved ones with DS. Caregivers desired more race concordant medical providers or, when not possible, medical providers who are willing to learn more about DS and build trusted, longitudinal relationships. Primary care providers discussed the need for funded resources and support services to effectively care for their patients with DS.<\/jats:p>","DOI":"10.1002\/ajmg.a.63069","type":"journal-article","created":{"date-parts":[[2022,12,9]],"date-time":"2022-12-09T21:30:32Z","timestamp":1670621432000},"page":"742-752","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race"],"prefix":"10.1002","volume":"191","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7905-871X","authenticated-orcid":false,"given":"Kavita","family":"Krell","sequence":"first","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"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 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carie","family":"Michael","sequence":"additional","affiliation":[{"name":"Mongan Institute, Massachusetts General Hospital  Boston Massachusetts USA"}],"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 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeanhee","family":"Chung","sequence":"additional","affiliation":[{"name":"Laboratory of Computer Science, Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Baker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1551-3274","authenticated-orcid":false,"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 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelli","family":"Caughman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Cullen","sequence":"additional","affiliation":[{"name":"Massachusetts Down Syndrome Congress  Burlington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen","family":"Gallagher","sequence":"additional","affiliation":[{"name":"Massachusetts Down Syndrome Congress  Burlington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roxanne","family":"Hoke\u2010Chandler","sequence":"additional","affiliation":[],"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"}]},{"given":"Kate","family":"O'Neill","sequence":"additional","affiliation":[{"name":"LuMind IDSC Down Syndrome Foundation  Burlington Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angeles","family":"Pe\u00f1a","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Oregon Health &amp; Science University  Portland Oregon USA"}],"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 USA"}],"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 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5845-0205","authenticated-orcid":false,"given":"Carlos G.","family":"Torres","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"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 USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,12,9]]},"reference":[{"key":"e_1_2_10_2_1","volume-title":"National healthcare quality and disparities report: Appendix A","author":"AHRQ","year":"2016"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/15504263.2016.1145312"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMms2025396"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)30569-X"},{"key":"e_1_2_10_6_1","unstructured":"CAHPS.Clinician & group survey.https:\/\/www.ahrq.gov\/cahps\/surveys-guidance\/cg\/index.html"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-020-01033-5"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2016.127"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2013.06.022"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/pd.2702"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/nur.22217"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/0890117120934609"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-0188"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_10_16_1","unstructured":"HINTS.Health information national trends survey.https:\/\/hints.cancer.gov\/"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.1516047113"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1352\/1934-9556-59.1.84"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/107755800773743628"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1352\/1944-7558-123.5.387"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2017-4119"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2015.12.026"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35795"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2014.12.025"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/1609406917712131"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.acap.2018.06.011"}],"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.63069","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajmg.a.63069","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.a.63069","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,18]],"date-time":"2023-08-18T01:35:27Z","timestamp":1692322527000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.a.63069"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12,9]]},"references-count":25,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2023,3]]}},"alternative-id":["10.1002\/ajmg.a.63069"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.a.63069","archive":["Portico"],"relation":{},"ISSN":["1552-4825","1552-4833"],"issn-type":[{"value":"1552-4825","type":"print"},{"value":"1552-4833","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,12,9]]},"assertion":[{"value":"2022-08-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-18","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-12-09","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}