TY - JOUR
T1 - Identifying Barriers and Facilitators to Accessing Care for Historically Marginalized Communities Affected by Parkinson Disease
T2 - A Qualitative Study
AU - Kipnis, Danielle
AU - Lin, Michele
AU - Pacheco, Alissa
AU - Mensah, Nia
AU - Gu, Yu
AU - Macpherson, Chelsea E.
AU - Kempner, Kelsey
AU - Parker, Anita
AU - Coley, R. Bernard
AU - Coley, Denise
AU - Shah, Hiral
AU - Quinn, Lori
N1 - Publisher Copyright:
© W. Montague Cobb-NMA Health Institute 2024.
PY - 2024
Y1 - 2024
N2 - 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.
AB - 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.
KW - Community-based participatory research
KW - Healthcare disparities
KW - Hispanic people
KW - Members of the Black Diaspora
KW - Parkinson disease
KW - Puerto Rican people
KW - Qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85192765638&partnerID=8YFLogxK
U2 - 10.1007/s40615-024-02011-2
DO - 10.1007/s40615-024-02011-2
M3 - Article
AN - SCOPUS:85192765638
SN - 2197-3792
JO - Journal of Racial and Ethnic Health Disparities
JF - Journal of Racial and Ethnic Health Disparities
ER -