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
{"title":"Identifying Barriers and Facilitators to Accessing Care for Historically Marginalized Communities Affected by Parkinson Disease: A Qualitative Study.","authors":"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","doi":"10.1007/s40615-024-02011-2","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>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.</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. These sources have broad implications and should be addressed through collaborative community programming.</p>","PeriodicalId":16921,"journal":{"name":"Journal of Racial and Ethnic Health Disparities","volume":" ","pages":"1811-1823"},"PeriodicalIF":3.2000,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Racial and Ethnic Health Disparities","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s40615-024-02011-2","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/5/8 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH","Score":null,"Total":0}
引用次数: 0
Abstract
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.