Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study

IntroductionDespite being the fastest-growing ethnic group in the United States, Asian Americans, encompassing all ethnic subgroups, remain notably underrepresented in Parkinson's Disease (PD) research and clinical trials. This qualitative study seeks to address this gap by exploring how Asian Americans experience PD diagnosis, treatment, care, and research participation.MethodsIn-depth interviews were conducted with ten Chinese and Vietnamese people with Parkinson's disease (PWP), nine family care partners, ten providers, and a focus group discussion was conducted with three community advocates in the Greater Boston area. Data were coded using a behavioral model that organizes health services utilization into three domains - predisposing, enabling, and need factors. Resulting themes were then mapped onto an access-to-care framework that conceptualizes access as influenced by both health system characteristics and individuals' abilities to seek, reach, afford, and engage in care.ResultsWe identified individual- and systems-level barriers that present before and after the initial establishment of care, and additional barriers that inhibit research participation among Chinese and Vietnamese PWP. Barriers to delayed diagnosis and reduced quality of care included linguistic and physical inaccessibility to healthcare services, limited health literacy about PD symptoms, cultural beliefs, dissatisfaction with care, shame, and stigma. Outreach from researchers who share a similar ethnicity as PWP may help enhance research participation.ConclusionsOur findings help fill important research gaps regarding the diagnosis and treatment of Asian American PWP. Recommendations for improvements include the need for linguistically- and culturally-tailored health education, outreach, and services to better support Asian American PWP.