{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T13:52:01Z","timestamp":1785505921099,"version":"3.56.0"},"reference-count":32,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2023,6,20]],"date-time":"2023-06-20T00:00:00Z","timestamp":1687219200000},"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":[[2023,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish\u2010speaking. Data were collected through three methods: (1) a nationally distributed, 20\u2010item survey, (2) two focus groups with seven family caregivers of individuals with DS who self\u2010identified as living in primarily Spanish speaking households, and (3) 20 interviews with primary care providers (PCPs) who care for patients who are underrepresented minorities. Standard summary statistics were used to analyze the quantitative survey results. Focus group and interview transcripts, as well as an open\u2010ended response question in the survey, were analyzed using qualitative coding methods to identify key themes. Both caregivers and PCPs described how language barriers make giving and receiving quality care difficult. Caregivers additionally described condescending, discriminatory treatment within the medical system and shared feelings of caregiver stress and social isolation. Challenges to care experienced by families of individuals with DS are compounded for Spanish\u2010speaking families, where the ability to build trust with providers and in the health care system may be compromised by cultural and language differences, systemic issues (lack of time or inability to craft more nuanced schedules so that patients with higher needs are offered more time), mistrust, and sometimes, overt racism. Building this trust is critical to improve access to information, care options, and research opportunities, especially for this community that depends on their clinicians and nonprofit groups as trusted messengers. More study is needed to understand how to better reach out to these communities through primary care clinician networks and nonprofit organizations.<\/jats:p>","DOI":"10.1002\/ajmg.a.63250","type":"journal-article","created":{"date-parts":[[2023,6,20]],"date-time":"2023-06-20T12:00:45Z","timestamp":1687262445000},"page":"2132-2141","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Healthcare experiences of patients with Down syndrome from primarily Spanish\u2010speaking households"],"prefix":"10.1002","volume":"191","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4423-9721","authenticated-orcid":false,"given":"Jeanhee","family":"Chung","sequence":"first","affiliation":[{"name":"Laboratory of Computer Science, Department of Medicine Massachusetts General Hospital  Boston Massachusetts USA"}],"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 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":"Sandra","family":"Baker","sequence":"additional","affiliation":[{"name":"Reseda CA USA"}],"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":[{"name":"Fishers IN USA"}],"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":[{"name":"Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julius","family":"Maina","sequence":"additional","affiliation":[{"name":"Weymouth MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diana","family":"McLuckie","sequence":"additional","affiliation":[{"name":"Point of Rocks MA USA"}],"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; 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