Introduction
Despite 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.
Methods
In-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.
Results
We 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.
Conclusions
Our 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.
Plain language summary
Obstacles to diagnosis, treatment, care, and research participation for Asian Americans with Parkinson's disease: an interview- and discussion-based study
Obstacles to diagnosis, treatment, care, and research participation for Asian Americans with Parkinson's disease: an interview- and discussion-based study
Why was the study done?
Language and cultural barriers can affect how Parkinson's disease is diagnosed and managed, leading to delays in diagnosis, less effective treatment, and lower quality of life. Little research exists on this topic among Asian Americans, despite being the fastest-growing ethnic group in the United States. Asian Americans also participate in research studies and clinical trials less often than other groups.
What did the researchers do?
We interviewed Chinese and Vietnamese people with Parkinson's disease, their family members caring for them, medical providers, and community leaders in the Greater Boston area. We found common problems affecting care for Parkinson's disease and research participation and added these to a model showing how both health system and individual factors affect access to care. Using what we learned, we created recommendations to improve the steps of the Parkinson's disease diagnosis and treatment journey, and to encourage more Asian Americans to take part in research opportunities.
What did the researchers find?
Obstacles to Parkinson's disease care can exist both before and after someone first sees a doctor. These obstacles can come from personal issues or from aspects of their environment. Before seeing a doctor, problems include not being able to speak English well or feeling shame or stigma about their symptoms. After being diagnosed with Parkinson's disease, problems can include issues getting to doctor's appointments, dissatisfaction with the care they are getting, or not understanding the disease. Participation in research can also be improved when researchers share a similar ethnic background.
What do the findings mean?
Our study helps add to research about Asian American people with Parkinson's disease. We suggest ways to improve care for Asian American people with Parkinson's disease and their family members, such as offering health information and services sensitive to their language and culture.