Identifying Barriers and Facilitators to Accessing Care for Historically Marginalized Communities Affected by Parkinson Disease: A Qualitative Study

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

    Research output: Contribution to journalArticlepeer-review

    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.

    Original languageEnglish
    JournalJournal of Racial and Ethnic Health Disparities
    DOIs
    StateAccepted/In press - 2024

    Keywords

    • Community-based participatory research
    • Healthcare disparities
    • Hispanic people
    • Members of the Black Diaspora
    • Parkinson disease
    • Puerto Rican people
    • Qualitative research

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