Objective: To create a culturally sensitive educational resource that (1) centers the voices of the Spanish-speaking community, (2) dispels misconceptions and breaks down barriers to resources, (3) showcases the community’s diversity, and (4) supports those receiving a PD diagnosis.

Background: The Spanish-speaking community living with PD face unique barriers that require a tailored approach to engagement.

Method: The Davis Phinney Foundation, American Parkinson Disease Association, and Columbia University Irving Medical Center established a collaboration to create a storytelling educational resource featuring the voices of the Spanish-speaking Parkinson’s community.  In 2023, at the WPC in Barcelona, 21 participants from 9 countries gathered to discuss the idea.  Then, 8 focus groups with 49 Hispanics living with PD and caregivers from 10 countries were held over Zoom to identify themes to include.  Individuals shared their testimonies via email, voice note, and photos of handwritten prose.  Two writers, women living with PD, organized the stories. Two Hispanic editors then harmonized the material maintaining the conversational format and simple language of the focus groups. Dialogues start before the diagnosis and end with an invitation to personalize a Wellness Prescription.  With final text, illustrations were developed by a Hispanic graphic design company, experienced with PD personally and professionally. Participants were kept abreast of progress.

Results: “Parkinson Positivos” [Figure 1, Book Cover] is a model of community engagement where the community’s voice, priorities, challenges and strengths are the centerpiece of the initiative.  By ensuring the team members all had deep ties to the community, all elements of the book messaged the context, lived experience, and themes critical to this community.  For example, the illustrations convey the emotional realities of those living with PD, and the colors, textiles and social interactions remind the reader of the Hispanic culture’s diversity and traditions.[Figure 2, example page].

Conclusion: “Parkinson Positivos” is a collaborative approach to weave the community’s voice with educational resources to provide hope and empowerment and increase awareness and knowledge of PD, so families can have a positive outlook and know they are not alone in their journey.

Figure 1: Parkinson Positivos Cover

Figure 2: Example Page

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/parkinson-positivos-a-collaborative-effort-to-educate-and-empower-the-spanish-speaking-community/