Danielle Kipnis, Michele Lin, Alissa Pacheco, Nia Mensah, Yu Gu, Chelsea E Macpherson, Kelsey Kempner, Anita Parker, R Bernard Coley, Denise Coley, Hiral Shah, Lori Quinn
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It is important to understand barriers to early diagnosis and healthcare access for these historically marginalized populations from the community's perspective.</p><p><strong>Methods: </strong>Our team conducted two focus groups to identify barriers and facilitators to PD healthcare-seeking behavior. We sought to identify which barriers are modifiable to ultimately improve engagement in neurological care for MBD and Hispanic individuals affected by PD.</p><p><strong>Results: </strong>We enrolled 15 participants (13 female; African/African American/Black n = 10, Hispanic/Puerto Rican n = 3, other n = 2) for two focus groups. Discussions revealed sources of barriers to healthcare-seeking behavior in three main domains: legacy of racism in the United States, ancestral cultural environment, and healthcare system access. These sources influenced individuals' PD knowledge and familiarity. Additionally, participants expressed a desire to know more about PD and called for increased community-based programming for education and awareness.</p><p><strong>Discussion: </strong>This paper uses a community-based participatory research approach to describe the experiences of MBD, Hispanic, and Latinx people in Manhattan and the surrounding areas in relation to possible sources of healthcare disparities and delayed PD diagnosis. 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引用次数: 0
摘要
简介帕金森病（PD）是第二大最常见的神经退行性疾病。散居国外的黑人（MBD）和西班牙裔/拉美裔人在出现症状后得到及时诊断的可能性较小，而且由于诊断较晚，他们的病情更严重。历史上被边缘化的人群（即黑种人、西班牙裔和拉丁裔社区）在研究中没有准确的代表性；这一点以及许多其他障碍，加剧了对帕金森病的报告不足和认识不足。从社区的角度了解这些历来被边缘化的人群在早期诊断和获得医疗服务方面遇到的障碍非常重要：我们的团队进行了两次焦点小组讨论，以确定阻碍脊髓灰质炎就医行为的障碍和促进因素。我们试图找出哪些障碍是可以改变的，以最终改善受帕金森病影响的 MBD 和西班牙裔个体参与神经系统护理的情况：我们招募了 15 名参与者（13 名女性；非洲裔/非裔美国人/黑人 n = 10，西班牙裔/波多黎各人 n = 3，其他 n = 2）参加两个焦点小组。讨论揭示了阻碍寻求医疗保健行为的三个主要方面：美国遗留的种族主义、祖先的文化环境和医疗保健系统的使用。这些因素影响了个人对 PD 的了解和熟悉程度。此外，参与者表示希望了解更多有关肢端麻痹症的知识，并呼吁增加基于社区的教育和宣传计划：本文采用基于社区的参与式研究方法，描述了曼哈顿及周边地区的 MBD、西班牙裔和拉美裔人群在医疗保健差异和延迟 PD 诊断的可能来源方面的经历。这些根源具有广泛的影响，应通过合作性社区计划加以解决。
Identifying Barriers and Facilitators to Accessing Care for Historically Marginalized Communities Affected by Parkinson Disease: A Qualitative Study.
Introduction: Parkinson disease (PD) is the second most common neurodegenerative disease. Members of the Black Diaspora (MBD) and Hispanic/Latinx people are less likely to receive a timely diagnosis following the onset of symptoms and more likely to experience greater disease severity due to late diagnosis. Historically marginalized populations (i.e., MBD, Hispanic, and Latinx communities) are not accurately represented in research; this, along with many other barriers, compounds underreporting and lack of recognition of PD. It is important to understand barriers to early diagnosis and healthcare access for these historically marginalized populations from the community's perspective.
Methods: Our team conducted two focus groups to identify barriers and facilitators to PD healthcare-seeking behavior. We sought to identify which barriers are modifiable to ultimately improve engagement in neurological care for MBD and Hispanic individuals affected by PD.
Results: We enrolled 15 participants (13 female; African/African American/Black n = 10, Hispanic/Puerto Rican n = 3, other n = 2) for two focus groups. Discussions revealed sources of barriers to healthcare-seeking behavior in three main domains: legacy of racism in the United States, ancestral cultural environment, and healthcare system access. These sources influenced individuals' PD knowledge and familiarity. Additionally, participants expressed a desire to know more about PD and called for increased community-based programming for education and awareness.
Discussion: This paper uses a community-based participatory research approach to describe the experiences of MBD, Hispanic, and Latinx people in Manhattan and the surrounding areas in relation to possible sources of healthcare disparities and delayed PD diagnosis. These sources have broad implications and should be addressed through collaborative community programming.
期刊介绍：
Journal of Racial and Ethnic Health Disparities reports on the scholarly progress of work to understand, address, and ultimately eliminate health disparities based on race and ethnicity. Efforts to explore underlying causes of health disparities and to describe interventions that have been undertaken to address racial and ethnic health disparities are featured. Promising studies that are ongoing or studies that have longer term data are welcome, as are studies that serve as lessons for best practices in eliminating health disparities. Original research, systematic reviews, and commentaries presenting the state-of-the-art thinking on problems centered on health disparities will be considered for publication. We particularly encourage review articles that generate innovative and testable ideas, and constructive discussions and/or critiques of health disparities.Because the Journal of Racial and Ethnic Health Disparities receives a large number of submissions, about 30% of submissions to the Journal are sent out for full peer review.
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