Healthcare experiences of patients with Down syndrome who are Black,African American,of African descent,or of mixed race |
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| Authors: | Kavita Krell Albert Pless Jr Carie Michael Amy Torres Jeanhee Chung Sandra Baker Jasmine M. Blake Kelli Caughman Sarah Cullen Maureen Gallagher Roxanne Hoke-Chandler Julius Maina Diana McLuckie Kate O'Neill Angeles Peña Dina Royal Michelle Slape Noemi Alice Spinazzi Carlos G. Torres Brian G. Skotko |
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| Affiliation: | 1. Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA;2. Mongan Institute, Massachusetts General Hospital, Boston, Massachusetts, USA;3. Laboratory of Computer Science, Massachusetts General Hospital, Boston, Massachusetts, USA;4. Departments of Internal Medicine and Pediatrics, Icahn School of Medicine at Mount Sinai, New York, New York, USA;5. Massachusetts Down Syndrome Congress, Burlington, Massachusetts, USA;6. LuMind IDSC Down Syndrome Foundation, Burlington, Massachusetts, USA;7. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, USA;8. Division of Primary Care, Department of Pediatrics, University of California San Francisco Benioff Children's Hospital Oakland, Oakland, California, USA;9. Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA |
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| Abstract: | 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-depth 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. |
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| Keywords: | Down syndrome trisomy 21 African American black diversity equity |
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