Study Rationale: Parkinson’s disease (PD) affects more than 10 million people worldwide, including one million in the U.S., with an incidence of 1% among individuals over 60. Although prevalence is similar across populations, some communities face delayed diagnoses and limited access to neurologists or advanced therapies. King County, Washington is home to an estimated 30,000 people of Somali ancestry. Lower health literacy rates and lack of culturally and linguistically appropriate educational resources contribute to reduced health care utilization in the community.
Hypothesis: We hypothesize that the Somali community has low baseline knowledge of Parkinson’s disease, and that their knowledge of the disease can be increased by a Somali language, culturally tailored educational intervention.
Study Design: For this project, we will partner with the Somali Health Board (SHB), a 501(c)(3) organization, to develop and evaluate a culturally tailored PD educational intervention.
This project consists of three phases: (1) development of Somali-language, culturally-appropriate PD educational materials in collaboration with SHB and a Somali interpreter, by adapting existing educational material from The Michael J. Fox Foundation and the American Parkinson’s Disease Association; (2) implementation of three delivery methods: print resources, clinician-led workshops, and clinician-patient/caregiver co-led workshops; and (3) evaluation of effectiveness using pre- and post-intervention surveys to assess knowledge and attitude gains and satisfaction.
Impact on Diagnosis/Treatment of Parkinson’s disease: This project will have translational science impact by informing how to effectively design and implement culturally-appropriate educational materials on PD for the Somali community, ultimately leading to earlier diagnoses and better outcomes. The findings of this project will help determine the best delivery method for a PD educational intervention in the Somali community, which can be refined for delivery to wider audiences.
Next Steps for Development:The project’s framework—combining culturally tailored materials, multi-modal delivery, rigorous evaluation, and strong community partnerships—creates a model for interventions beyond PD. The educational material may continue to be translated and culturally adapted for other communities, providing generalizable solutions to enhance translational research impact across multiple diseases and populations.