Laboratory of Computer Science, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA.
Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
Am J Med Genet A. 2023 Aug;191(8):2132-2141. doi: 10.1002/ajmg.a.63250. Epub 2023 Jun 20.
We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish-speaking. Data were collected through three methods: (1) a nationally distributed, 20-item survey, (2) two focus groups with seven family caregivers of individuals with DS who self-identified 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-ended 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-speaking 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.
我们报告了主要讲西班牙语的家庭中唐氏综合征（DS）患者的医疗保健经验。数据通过三种方法收集：（1）全国范围内分发的 20 项调查，（2）两个焦点小组，其中有七名自我认同为主要讲西班牙语家庭的 DS 患者的家庭照顾者，以及（3）对照顾代表性不足的少数族裔患者的 20 名初级保健提供者（PCP）进行的 20 次访谈。使用标准汇总统计数据来分析定量调查结果。使用定性编码方法分析焦点小组和访谈记录，以及调查中的开放式回答问题，以确定关键主题。照顾者和 PCP 都描述了语言障碍如何使提供和接受高质量的护理变得困难。照顾者还描述了医疗系统中的居高临下、歧视性待遇，并分享了照顾者的压力和社会孤立感。DS 患者家庭面临的护理挑战因讲西班牙语的家庭而更加复杂，由于文化和语言差异、系统问题（缺乏时间或无法制定更细致的时间表，以便为有更高需求的患者提供更多时间）、不信任以及有时明显的种族主义，与提供者建立信任的能力可能会受到影响。建立这种信任对于改善信息获取、护理选择和研究机会至关重要，尤其是对于这个依赖于他们的临床医生和非营利组织作为可信赖的信息传递者的社区。需要更多的研究来了解如何通过初级保健临床医生网络和非营利组织更好地接触这些社区。
