Objective: To describe the American Parkinson Disease Association (APDA)’s growing engagement with Mandarin-speaking communities in the US and share lessons from outreach efforts that combine translated resources, community partnerships, and qualitative research to guide culturally tailored programming.

Background: Mandarin-speaking families affected by PD in the US often face challenges in accessing information and care. Limited English proficiency and cultural stigma can discourage open discussion. Families struggle to navigate the US healthcare system and PD programming and may rely on informal networks for guidance. There is limited research on Mandarin-speaking PD patients’ experiences.

Method: With an initial grant in 2022, APDA began addressing language and cultural barriers through translation of key resources into simplified Chinese. APDA partnered with Chinese community organizations to deliver PD education sessions in Mandarin. Mandarin videos on PD were produced, along with in-person and virtual classes. More recently, APDA collaborated with ThinkNow Market Research to conduct patient interviews and caregiver focus groups. Transcripts from these semi-structured sessions were analyzed using thematic analysis with a structured codebook applied across transcripts to identify recurring patterns in diagnosis, healthcare communication, and caregiving roles.

Results: APDA had more than 800 Mandarin video views in FY24, with continued increases in FY25. The simplified Chinese materials were downloaded over 400 times and ordered in hard copy over 1100 times. Community feedback emphasized that families often misinterpret early symptoms as aging, rely heavily on Chinese-language platforms, and face stigma that discourages open discussion. Participants in the qualitative study described diagnoses that were minimized or poorly explained, language barriers that limited communication and information access, and a resulting reliance on family members to navigate care and manage the illness. They valued translated materials, but asked for stage-specific, mobile-friendly tools and a Mandarin hotline for real-time support.

Conclusion: Effective outreach to Mandarin-speaking families requires cultural adaptation, understanding of traditional health beliefs, and awareness of preferred communication platforms. These insights can inform future PD outreach strategies to ensure support across language and culture.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/american-parkinson-disease-association-outreach-to-mandarin-speaking-communities-in-the-united-states/