Sonia Chandra1, Denise Coley2, Bernard Coley3, Kermit Smith4, Sandra Coplin4, Angela Huckabee5, Richard Huckabee5, Terri Peacher-Ransom4, Lorraine Haye4, Alissa Pacheco6, Anita Parker7, Lori Quinn8, Parvathi Perumareddi1, Hiral Shah6
1Charles E Schmidt College of Medicine, Florida Atlantic University, 2Enable Your Vision, 3Parkinson's Foundation Research Advocate/Volunteer, 4Parkinson's Disease Advocate, 5Parkinson’s Foundation Research Advocate/Volunteer, 6Columbia University, 7St. Luke A.M.E. Church in Harlem, 8Teachers College, Columbia University
Objective:
Measure the impact of an educational resource for Parkinson’s Disease (PD) in Members of the Black Diaspora (MBD) created using a Community Based Participatory Research (CPBR) approach.
Background:
MBD are often diagnosed at later stages of PD than their White counterparts and less likely to participate in medical research. CBPR emphasizes mutual trust and respect through shared ownership of the research product(s) between the community and research team. The PD Movers: We Keep Moving is a CBPR project centered on MBD with PD. It is a compilation of narratives accompanied by vibrant illustrations published in 2022 to share information, provide hope and inspiration, and raise awareness of PD.
Design/Methods:
A mixed-methods approach was utilized where community members contributed to the development of interview guides. Individual interviews were conducted with PD Movers contributors (n=8) and with representatives from national PD advocacy organizations (n=6). Interviews were digitally recorded and transcribed*. Transcriptions were then analyzed using grounded theory. Concepts within the interviews were categorized using emergent themes and were verified by participants.
Geographic data was collected from physical copy (n=8181) order forms. Data was mapped using ArcGIS.
*Interview transcripts were generated with the artificial intelligence software Revoldive. Transcriptions were manually checked and corrected before analysis.
Results:
Community contributors and organizational representatives each emphasized the visibility and hopefulness of MBD within The PD Movers as a primary impact. Contributors also mentioned the cultural sensitivity of the research team as essential to the CBPR. Organizational representatives highlighted the need for similar projects to address the PD within other minoritized communities.
Geographic distribution data revealed clusters of orders within high population density areas. Further analysis is being done to map the order data with demographics on race and PD prevalence.
Conclusions:
CBPR can help create meaningful resources to increase visibility, awareness, and hope in historically underrepresented communities.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.