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Educating Spanish-Speaking Communities about Parkinson’s, Research Participation and Genetics: A Community Health Worker (Promotores) Model For Outreach

K. Schroeder, S. Osborne, D. Sperlakis, E. Mackenzie, I. Mata, C. Martinez (New York, NY, USA)

Meeting: MDS Virtual Congress 2020

Abstract Number: 504

Keywords: Multidisciplinary Approach

Category: Parkinson's Disease: Genetics

Objective: To prepare promotores to educate Spanish-speaking communities about Parkinson’s disease (PD), research participation and genetics.

Background: Hispanic PD communities are less likely to see a specialist and are underrepresented in research. A best practice for addressing gaps in knowledge, resources and support in Hispanic communities is Spanish-language, peer-to-peer education. Promotores are Hispanic/Latino community members who are trained to improve quality of life in their communities through health education. However, no standardized Spanish-language PD training for promotores exists. Parkinson’s Foundation and community partners addressed this gap by creating a pilot promotores training.

Method: Parkinson’s Foundation, Muhammad Ali Parkinson Center Hispanic Outreach Program and promotores’ organizations from the southwest created a standardized Spanish-language PD program to train 50 promotores in educating their communities. The program included presentations by researchers, clinicians and community engagement professionals on PD basics, an overview of research and genetics, and resources from the partner organizations. Patient advocates and promotores representatives presented on research participation and case examples of community outreach. Participants created outreach plans. Pre/post assessments were conducted on knowledge, attitude and intentions regarding PD, research and genetics

Results: In pre/post tests, increases were seen in agreement that knowledge of genetics can help find better treatments for PD (82%/96%) and identify who is at risk (89%/100%) and that Hispanic communities would be interested in genetic testing (54%/74%). Participants felt confident sharing information with the PD community (91%) after the program. They also agreed that information received was useful, new and important. Participants identified outreach opportunities at festivals, farmers markets, churches and senior centers.

Conclusion: This pilot demonstrates that a standardized, Spanish-language PD promotores training brings new, important information to Hispanic communities and makes a positive impact on knowledge and attitudes towards genetics. Next steps to expand this work include continuing education for promotores, evaluation of community outreach and replication of the program.

To cite this abstract in AMA style:

K. Schroeder, S. Osborne, D. Sperlakis, E. Mackenzie, I. Mata, C. Martinez. Educating Spanish-Speaking Communities about Parkinson’s, Research Participation and Genetics: A Community Health Worker (Promotores) Model For Outreach [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/educating-spanish-speaking-communities-about-parkinsons-research-participation-and-genetics-a-community-health-worker-promotores-model-for-outreach/. Accessed June 15, 2025.
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