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

Abstract

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

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.

Keywords

Asian Asian American Parkinson's disease qualitative study healthcare access barriers to care treatment delay

Introduction

Parkinson's disease (PD) is the second-most prevalent neurodegenerative disorder after Alzheimer's, affecting nearly 11.8 million individuals worldwide in 2021 and projected to increase to 25.2 million by 2050.^1,2 Prevalence in the US has increased by 155% in the 30 years leading up to 2019.³ PD presents with a range of motor symptoms including tremors, muscle stiffness, and slowness of movement, and non-motor symptoms including depression, sleep disorders, and cognitive changes.^4,5 Although PD itself is incurable, symptoms respond to exercise, medication, and surgical interventions.^6,7

Disparities in the diagnosis and management of PD across communities of color contribute to delayed diagnosis, suboptimal treatment, and reduced quality of life.⁸ Perceptions towards cultural differences and language barriers have been found to affect care-seeking, treatment management, and quality of care among Asian immigrants in the US.⁹ Health literacy shapes how individuals seek and engage with medical care and is low among some Asian populations. Research among people with Parkinson's disease (PWP) in Thailand and adults from the general population in Malaysia revealed significant gaps and misconceptions in knowledge and understanding of PD.^10,11 For example, a common misconception in the Malaysia study was that all PWP experience tremors. In China, delays in PD diagnosis have been linked to unfamiliarity with PD symptoms.¹² Stigma associated with a PD diagnosis also contributes to delays in seeking medical care and reduced quality of life.¹³ However, this dynamic has not been thoroughly researched among Asian Americans, who are the fastest-growing racial or ethnic group in the United States,¹⁴ and other contributing barriers may exist.

Family care partners play a critical role in the care of PWP^15,16 and often experience emotional and psychological strain¹⁷ that is worsened by cultural and language barriers and increases with the progression of PD symptoms.¹⁸ Research on Asian American care partner needs and burdens is also limited.¹⁵ Understanding the unique challenges of Asian American family care partners will help tailor interventions to better support both PWP and care partners.

Despite significant progress in the diagnosis and treatment of PD, there is a notable lack of participant diversity in medical research and clinical trials, with clinical trials often disproportionately enrolling Caucasian participants.^19,20 This issue is exacerbated by the scarcity of culturally and linguistically appropriate services (CLAS) for PWP and their families, particularly among Asian communities. The absence of CLAS undermines trust between these communities and the healthcare system, which further hinders recruitment of Asian individuals and discourages participation in PD-related clinical trials and research studies. Addressing these interconnected barriers is essential for improving both trust and representation in PD research.

Given the limited research in this area, this qualitative study seeks to explore how Asian Americans experience challenges in diagnosis, treatment, ongoing care, and participation in research, drawing on the perspectives of patients, family care partners, healthcare providers, and community advocates. The study focuses on Chinese and Vietnamese populations, the two largest Asian ethnic subgroups in Greater Boston.²¹ Findings from this qualitative study will inform the development of a quantitative survey designed to examine this research question in a broader population of Asian Americans, with survey results to be reported in a separate publication.

Methods

Reporting of this qualitative study was guided by the Standards for Reporting Qualitative Research (SRQR)²² (Supplementary 1).

Reflexivity statement

The research team included one female epidemiologist experienced in mixed-methods research, three community partners (two female and one male), one male neurologist and movement disorders specialist, and seven student research assistants (six female and one male). All team members were of Chinese, Korean, or Vietnamese ethnic descent, and most research assistants were fluent in spoken Cantonese, Mandarin, or Vietnamese. The epidemiologist, neurologist, and one community partner conceived and designed the study, recruited participants, and the epidemiologist also interviewed participants and conducted the focus group discussion. Research assistants and two community partners carried out interviews in each participant's native language and translated and transcribed the interviews.

The ability to conduct interviews in the native languages of each participant made it easier to discuss sensitive topics, such as cultural values and health-related norms, allowing for richer data collection. Our shared cultural and linguistic backgrounds likely strengthened rapport and trust with participants, but they may also have led us to probe more deeply around topics that resonated with our own experiences, or to probe less for unspoken assumptions that felt intuitively familiar to us. However, each interview was conducted by two research assistants who supported each other in using consistent and standardized probing techniques. We also used multiple coders to analyze each transcript, paying specific attention to places where interpretations differed or relied on shared cultural assumptions.

Participant recruitment

We conducted individual in-depth interviews with PWP, care partners, and health care providers, and held a focus group discussion with community advocates. Our goal was to recruit up to ten individuals within each stakeholder group or until we reached content saturation. PWP and care partners were recruited through direct referrals by our team's neurologist, and by outreach to clinicians at other Boston-area hospitals and health centers. Health care providers were recruited through direct outreach and referrals. Community advocates were recruited via our Stakeholder Advisory Board (SAB), which consisted of community organization leaders working within both the local Chinese and Vietnamese communities of Greater Boston. SAB members participated in quarterly meetings to discuss research progress and provide feedback and recommendations on our study materials. Approval for this study was granted by the Tufts University Institutional Review Board (ID#: STUDY00002304).

Although we did not start by purposively recruiting PWP and care partners by ethnicity (Chinese or Vietnamese), as data collection progressed, we shifted to more targeted recruitment of Vietnamese participants to balance their representation with the relatively higher number of Chinese PWP enrolled.

Eligibility criteria

All participants were 18 years of age or older. PWP had to have a confirmed PD diagnosis, be of Chinese or Vietnamese ethnicity, and be able to be interviewed by phone or videoconference. Care partners had to be providing physical or emotional support for a Chinese or Vietnamese family member diagnosed with PD. In four instances, both the PWP and their family care partner were recruited and interviewed together for scheduling optimization. Health care providers had to be currently caring for PWP. Community advocates had to be knowledgeable about the Chinese and/or Vietnamese communities in the Greater Boston area.

Interview process and data collection

Interviews were held between November 2022 and May 2023 in Chinese or English, according to the interviewee's preference. The focus group discussion for community advocates was conducted in English. An information sheet was sent to interested participants for review before their scheduled interview. The interview session began with researchers answering any outstanding questions, then obtaining verbal consent for the interview. Consent to audio record interviews was provided by all but one participant, for whom detailed notes were taken instead. All participants were compensated with a $50 Amazon gift card.

Interviews and the focus group discussion followed semi-structured interview guides (Supplementary 2–5), which varied by stakeholder group. PWP were asked about their diagnoses and treatment journeys, support from care partners, cultural views on PD, and perspectives on participating in PD research studies. Care partners were asked about their caregiving experience, information-seeking and decision-making for their family member, cultural views on PD, and perspectives on their family member's participation in PD studies. Health care providers were asked about their care experiences with Asian PWP, systems-level barriers to caring for Asian PWP, and recruitment of Asian PWP for research studies. Finally, community advocates were asked about their knowledge and perceptions of PD among Asian populations, cultural views on PD, and approaches to care and support for Asian PWP. Individual interviews lasted approximately one hour, and the focus group discussion lasted about 45 min.

To protect sensitive health information that might arise during conversations, individual interviews were conducted with healthcare providers, PWP, and care partners except on four occasions when PWPs and their related care partners were interviewed together. However, a focus group format was chosen for community advocates to encourage a richer and more interactive discussion of shared experiences across communities, and because the conversation did not involve discussing protected health information.

Data analysis

Interviewers transcribed and translated non-English interviews into English. Each transcript was coded independently by at least two researchers, who met afterwards to reconcile coding and ensure consistency. Any coding discrepancies were discussed with an additional team member to achieve consensus. Coding and analyses were conducted in NVivo 12 Plus²³ using a directed content analysis approach.²⁴ An a priori codebook based on Andersen's Behavioral Model domains, which include predisposing, enabling, and need-related factors that influence health care use,²⁵ was applied deductively to the interview and focus group transcripts. Additional codes were inductively added and refined when data did not fit any of the initial codes. After the coding process, we generated themes which captured barriers to care-seeking, diagnosis, treatment, ongoing care, and research participation. We iteratively reviewed and refined these themes during weekly team meetings to check fit with the data through the different stakeholder perspectives. We then mapped these themes as barriers to movement between stages in Levesque et al.'s framework,²⁶ which describes the progression from identification of a health care need to health care utilization and outcomes, incorporating both individual- and systems-level factors. When a theme did not align clearly with a single stage, the team discussed its meaning, reviewed the data supporting the theme, and came to consensus on the most appropriate stage, documenting the rationale for its placement.

Results

A total of 18 PWP and 11 care partners were screened for participation. Of these, eight PWP and two care partners declined participation. Among those declining participation were four Vietnamese PWP, and one Vietnamese care partner. Reasons for declining included personal reasons and the severity of PD for PWP. All health care providers and Chinese community advocates screened elected to participate. Our original plan to hold a separate focus group discussion with Vietnamese community advocates did not materialize because we were unable to recruit any interested individuals.

A total of ten PWP, nine care partners, eight health care providers, and three community advocates were enrolled in this study. Health care providers included two movement disorders specialists, one neurology resident, one primary care physician, one physical therapist, one nurse practitioner, and one registered nurse, all working in urban hospital settings. The three community advocates were all Chinese and included a female representative from the Alzheimer's Association, a female nurse administrator from a rehabilitation center serving the Asian elderly population, and a male health educator and advocate serving the elderly Chinese community just south of Boston. Although recruitment numbers in all stakeholder groups, except PWP, were lower than our originally anticipated numbers, qualitative analysis indicated that interviews achieved appropriate content saturation within these groups, giving confidence in the robustness of the findings.

Table 1 summarizes the demographic characteristics of the ten PWP and nine care partners enrolled. All but one PWP had lived in the U.S. for at least 20 years. Most PWP were male and most care partners were female. Education levels were evenly distributed among PWP, while most care partners had college or higher education. Both groups were predominantly married and ethnically Chinese, with similar English fluency levels; two PWP were non-English speakers. Over half of PWP had MassHealth (Medicaid) or Medicare insurance.

Table 1.

Characteristics of people with Parkinson's disease (PWP) and care partners.

	PWP (n = 10)	Care partners (n = 9)
Age (in years)	68.3 (65–74)	54.3 (35–80)
Years Living in United States
0–19 Years	1	1
20–39 Years	5	4
40+ Years	4	4
Sex
Female	2	8
Male	8	1
Education Level
Below High School	3	1
High School	2	1
College	3	5
Above College	2	2
Marital Status
Single	1	0
Divorced/Separated	3	0
Married/Domestic Partnership	6	9
Ethnicity
Chinese	10	8
Vietnamese	0	1
English Fluency
Non-Speaker	2	0
Basic	4	3
Intermediate	2	3
Advanced/Fluent	2	3
Health Insurance
MassHealth (Medicaid)	5	N/A
Medicare	2	N/A
Private	3	N/A
Relationship to Patient
Spouse	N/A	3
Child	N/A	5
Niece/Nephew	N/A	1

N/A = Question not asked to stakeholder group.

Figure 1 presents our identified themes mapped onto Levesque et al.'s framework. The themes shown on the top row represent systems-level barriers, while those on the bottom row represent individual-level barriers. We further interpreted the first three steps (Health Care Needs to Health Care Seeking) of the Levesque et al. framework as stages occurring prior to the initial establishment of care, and the latter three steps (Health Care Reaching to Health Care Consequences) as stages occurring afterwards.

Figure 1.

Levesque et al. framework with mapped themes illustrating barriers from stage to stage.

Stage #1: recognizing a health need

Cultural health beliefs and limited knowledge about PD delay symptom recognition and care-seeking. Both care partners and providers emphasized the need for health materials in Chinese and other Asian languages to reduce access barriers, with providers seen as key to improving resource accessibility.

“Maybe if there were more, you know Chinese language, or whatever Asian language-focused information that was more easily accessible, probably through health care clinics about the disease, that might be helpful.” (Care Partner 209)

“I think one of the big issues is information. We have information about Parkinson's in Spanish, we have information in English. We have them in Simplified Chinese. We don't have anything in Vietnamese. So, what we have is fairly limited for information that we can give the patient.” (Provider 304)

Table 2 presents a broad range of quotes reflecting two individual-level sub-themes within this stage that prevent PWP from perceiving the need for or desiring healthcare.

Table 2.

Cultural health beliefs: individual-level sub-themes and quotes.

Sub-Theme	Quotes
Lack of Health Literacy	“Chinese people normally are pessimistic about any diseases because they are not very knowledgeable about diseases.” (PWP 102)
	“Chinese society doesn’t seem to pay as much attention as Americans on getting diagnoses for their diseases…I saw people have shaking hands when they use chopsticks, but they didn’t think to go to the hospital, they just think it is a (normal) thing of being old, being shaky.” (PWP 103)
	“I don’t know if people who do not have this disease are familiar with it or not. Even with people who have the disease, they don’t talk about it. So, we also don’t want to talk to them about it. They are not willing to say that they have Parkinson's.” (PWP 105)
	“I can only speak from my own perspective. I did not know anything about Parkinson's Disease until five years ago when somebody mentioned one of our friends has Parkinson's Disease. I have heard of the terminology and the symptoms of the disease. I never paid attention to it until it impacted me.” (PWP 109)
	“But in Vietnamese I don't think we have the definition for Parkinson, correct? …But most people we know…they don't know what it is. And it's very hard to explain…you know, what it is…it's a lot. I read it…I understand it, but I cannot, you know…make (other people) understand…Yeah. There's no definition in Vietnamese.” (Care Partner 203)
	“I looked all over for books. I bought books to read. Because back then I didn’t know how to use the internet. He's had Parkinson's Disease for 16–17 years now and in the beginning, I was pretty scared. I didn’t know how to deal with it, so I just kept looking for books to read. Every time I saw a book on Parkinson's Disease I would go buy it. I’d grab a few books and try out what they would say. Because I just didn’t know any information on the disease.” (Care Partner 207)
	“But when a lot of my elderly immigrants who have a lower educational level or lower health literacy level, they don't understand the concept of Parkinson's, or when I try to explain it to them…they don't really fully grasp what it is. It's a neurological disease that could be progressive…and it can cause a lot of issues further down the line…the most common response that I get from…immigrants who have a lack of health literacy is that ‘I feel fine now. I don’t need to see anybody.’” (Provider 302)
	“‘Oh, I didn't know that my father has Parkinson's. What is that?’ Sounds like they have no idea, they just associate Parkinson's symptoms with old age. So that's my experience.” (Community Advocate 402)
Unwillingness to Share or Address Health Needs	“I didn’t tell anyone about this, except some people noticed that I have hand tremors… It is what it is, how can they help me? I also don’t think people will be interested in hearing about the negative stuff. Also, I really just don’t think telling them will help anything, so I am not willing to tell them about it.” (PWP 104)
	“I don’t know if people who do not have this disease are familiar with it or not. Even with people who have the disease, they don’t talk about it. So, we also don’t want to talk to them about it. They are not willing to say that they had Parkinson's.” (PWP 105)
	“I did not share the news that I have Parkinson's Disease with friends. Only a handful of my friends know. I have one son and he knows…So, I maintain my normal lifestyle knowing I have some limitations but I have accepted that.” (PWP 109)
	“But, culturally, she did not – as a Chinese person, she never wanted to seek help. Didn't want to bother other people.” (Care Partner 201)
	“For Chinese [people], if the disease is severe, then they will tell others, there's little to hide. If their condition is not severe then they don’t want to tell others.” (Care Partner 205)
	“Chinese people are generally very conservative about their lives and do not mention if they have an illness.” (Care Partner 207)
	“It's like the whole, you know he's the Chinese dad and doesn't feel like he should be doing those types of things (sharing emotions) …I shouldn't bother my kids about this or…I shouldn't bother people, and I should just do things myself, and then sometimes we get frustrated with him.” (Care Partner 209)
	“I think it depends on…the approach…My experience, when you talk to people or try to ask people whether you have this problem, that disease or whatever… they are not willing to answer your questions.” (Community Advocate 401)

Lack of health literacy

Several PWP noted limited PD awareness in the Chinese community, with one confirming this gap from personal experience (PWP 109). One provider described elderly Chinese immigrants struggling to understand the biology, prognosis, and treatment for PD (Provider 302). A noted consequence of this lack of health literacy was greater pessimism about disease diagnoses (PWP 102). PD symptoms were often mistaken for normal aging by both PWP and advocates (PWP 103, Community Advocate 402). However, one care partner sought to improve their health literacy after their partner's diagnosis (Care Partner 207). In the Vietnamese community, unfamiliarity with PD was partly due to the lack of specific terminology for the disease (Care Partner 203).

Unwillingness to share or address health needs

Many PWP hesitated to share or address their health needs to avoid burdening others or due to discomfort discussing personal or emotional issues. One PWP limited disclosure because their diagnosis did not significantly impact their daily activities (PWP 109). However, symptoms were more likely to be acknowledged as the disease became more apparent (Care Partner 205).

Stage #2: seeking care

At the individual-level, dissatisfaction with the healthcare system, as well as feelings of shame and stigma, were barriers to seeking care. PWP expressed skepticism about providers’ motives and questioned whether their concern for patients’ well-being was genuine. This theme emerged as PWP described previous encounters with their providers, highlighting feelings of dissatisfaction with the care they received.

“It's a business. The experience is always the same.” (PWP 112)

“I get headaches. When I do, I ask the doctor about them. But when I don’t, they don't ask about them. Especially when I go see an English-speaking doctor.” (PWP 101)

Care partners also described feelings of shame and stigma linked to a PD diagnosis, including fear of judgment due to lost abilities and a more general stigma towards those with PD.

“So, I mean, I feel like just generally speaking, I feel like a lot of older, maybe older Chinese culture doesn't really view [Parkinson's disease] with a lot of positivity.” (Care Partner 209)

“You think if you cannot hold a chopstick, it's shameful, and I understand his situation in China. It's like that…he's afraid of people making jokes, making fun of him…So that's why he's afraid to let the people know he has a Parkinson's.” (Care Partner 210)

Stage #3: health care reaching

Physical inaccessibility of services was a systems-level theme, while the desire for culturally-sensitive care emerged as an individual-level theme at this stage.

PWP reported frustrations with accessing care, particularly due to challenges navigating appointment scheduling. One patient described difficulties scheduling a visit with a referred provider:

“I went to the front desk to try to make an appointment, but they told me that I didn’t need to and that they would call me, but they still haven’t. No one ever reached out. Not a word or anything…Now what? I don’t know how to make an appointment to see (the doctor). It is hard to follow-up with them. Everything is difficult. No phone number or anything.” (PWP 101)

Providers noted transportation and location as barriers for patients. One provider in downtown Boston described challenges that make it difficult for PWP to access care regularly.

“People don't want to come into the city, even if they live in the city, you know, traveling to different neighborhoods in the city is challenging … I understand, and we've tried to work on that. We have free parking. We're on the T [subway]. We have a lot of options, but to get from wherever they live to us at business hours during the day in Boston is a barrier for many people, especially if they're working, or the people that they rely on for transportation are working.” (Provider 303)

Care partners identified limited resources for ongoing support and treatment for advanced PD as a barrier. Currently, only one facility in Greater Boston offers inpatient nursing care tailored to East Asian populations, resulting in years-long waitlists for culturally-focused care.

“I signed him on a wait list for a nursing home. At some point, I'm not going to be able to physically care for him anymore, and it's a culturally more East Asian focused, and it's great…I wish we had more of those … here in Boston. We just have the one in Quincy, and…the waitlist is 5 years long.” (Care Partner 209)

Stage #4: healthcare utilization

The fourth stage addresses the transition from simply reaching health care services to effectively using them. At this stage, provider and care coordination strain emerged as a systems-level theme, while the desire for autonomy was identified as an individual-level theme.

Providers identified limited clinical time as a barrier to effective care, especially when additional time is needed to educate patients unfamiliar with PD.

“…the time is limited in clinic. We have 20 min basically … I think a lot of our patients are not familiar with the condition … I would need more time to spend with them to explain what it entails.” (Provider 304)

Coordination issues between interpreters and providers during visits were a major inconvenience, leading to growing frustration among patients and care partners with the care process.

“We have to wait for (an interpreter) to get there and that takes time. And then it might not match with the doctor's time so that's inconvenient. It's just a lot of waiting and a lot of hassle.” (Care Partner 207)

Care partners emphasized that allowing PWP to move at their own pace and maintain independence during care fosters a sense of progress and engagement in the care process.

“I think there is a family component which people get frustrated with. They have to take their mother to the medical doctor, and they have to get home to go to work. So, they're rushing the parent along as fast as they can, and it just takes patience to allow them to, at their pace, at their own independence, to feel that they are getting to the doctor's office and getting the care.” (Care Partner 210)

Stage #5: health care consequences

The final stage centers on barriers that impede positive health outcomes during ongoing care. Systems-level themes include poor patient-provider communication and cultural discordance, while individual-level themes involve cultural barriers to questioning providers and limited access to research participation.

Providers identified high patient volumes and long hours as major barriers in providing effective care for Asian PWP. One provider suggested employing dedicated staff to follow up with current patients as part of continuity of care.

“Just for us to have …some sort of routine, where we would need to regularly checkup on these patients…I think we would need to have a dedicated clinic staff to do this…Because, you know, when you're on an inpatient rotation, and you're…working really late, it's just impossible to have dedicated time where like, every week, you need to kind of see…who are the most vulnerable patients you have in clinic and who you need to reach out to.” (Provider 305)

Care partners wanted clearer information about treatment plans and expected outcomes for their loved ones with PD. One care partner noted that lack of information about the full course of treatment led to uncertainty and dissatisfaction with care.

“In the beginning the doctors told him to start taking medication…all he said was to just take medication. Take medication, but for how long? He said it depends on his condition. If it gets worse, then we have to increase the dosage. So he’d take the medication but deep down I didn’t feel at ease…I just needed to know more about his condition.” (Care Partner 207)

Providers noted the importance of cultural sensitivity in care. One provider, drawing from their own Chinese background, noted certain care considerations that came naturally to them, but may not be as intuitive for others unfamiliar with the cultural norms of Asian patients.

“I remember being a bedside nurse and my Asian patients would want warm water. But then our dispenser is an ice-cold water machine, and every morning when I had my Asian patients, I knew that I should get some warm water with the pills. But no one ever thinks of that…it's just something I knew off the top of my head, and you know it made things like a lot swifter. So yeah, it's just like these little cultural things that you know.” (Provider 301)

Many PWP and care partners desired incorporating traditional Chinese medicine, such as acupuncture and herbal medications, into treatment plans. They also expressed interest in exercise and holistic approaches, and favored reducing reliance on prescribed medications.

“During COVID, my daughter applied for aid to help pay for acupuncture because it was very expensive. It is about 70–80 dollars per session. Sometimes we go once every two weeks or once every month. I believe it was helping because it seemed like [husband] was getting better. According to the books I read, acupuncture can help.” (Care Partner 207)

“…we looked up a lot on alternative treatments because I really do not want to depend so much on medications …we want to do exercise. I wish I can know more. I wish we can know more about alternative medicines…like holistic approaches, things that are good…what kind of supplementary treatments he can take. It seems like doctors don’t know much about herbs or alternative medications. They are just very quick to say ‘oh, take this medicine, take that medicine’” (Care Partner 208)

Care partners also noted a cultural tendency to avoid burdening health care providers with additional questions.

“The Asian patients, they don't speak up. You know, they always keep quiet. They’re scared to ask (questions). Like my aunt and I, when we're done with the doctor…we just want to leave. Sometimes, you know we want to ask the question, we'll wait for the next appointment. We only ask…like one question. You know, we don't want to take more time from the doctor…Yeah, because [Asian patients] are always thinking they don’t want to bother the doctor so much. [The doctor] may not like it.” (Care Partner 203)

Nearly all PWP and care partners recognized the importance of research and expressed interest in participating in future clinical studies. Many PWP felt a sense of social responsibility, wanting to contribute to advances in PD research and treatment through their participation. One patient noted the importance of ethnic concordance as a motivating factor for them to participate in the current study.

“If the hospital were to randomly reach out and ask me to participate, I would not. But because I saw that there were Asian students with this research and they were researching more about Parkinson's disease, then I felt more inclined to participate because I am Asian myself.” (PWP 102)

However, some PWP expressed safety concerns about participating in clinical research, specifically studies on new PD medications. Care partners shared similar concerns and were also wary of research requirements that would be too demanding on their loved ones.

“Very open, I'd love to know more. As long as my husband says it's not intrusive to one's health, not like you’re a guinea pig on some kind of medicine.” (Care Partner 208)

Discussion

PD poses both unique and shared challenges for people of Asian descent living in the greater Boston area. Multiple cultural, social, and systemic factors can influence whether individuals perceive the need for medical attention, seek diagnosis and treatment, and maintain good quality long-term care. These multi-faceted barriers can arise before or after initial care, and are reflected in the perspectives of PWP, care partners, providers, and community advocates in this study.

We identified several barriers to health care access that may arise before PWP establish initial care. Systemic barriers include linguistic and physical inaccessibility of services. English proficiency, which has been previously cited as a key determinant of health care access among Asian Americans,²⁷ also affects the care-seeking process for PWP. The absence of linguistically appropriate educational materials was previously found to be a significant barrier to health care access for smaller, underrepresented Asian ethnic groups²⁸; however, our findings show that even larger groups like Chinese and Vietnamese populations face disparities, with some PD materials existing in Chinese, but very few in Vietnamese. Transportation and scheduling difficulties for medical appointments have also been previously cited as barriers to health care access among Asian Americans,²⁸ consistent with our findings among PWP.

At the individual level, barriers to care-seeking included limited health literacy, cultural beliefs, dissatisfaction with care, shame and stigma, and the desire for culturally-sensitive care. Our findings regarding limited health literacy supports the findings of previous mixed-methods research among older adults living on the east coast of the United States, which found that Chinese Americans possessed lower health literacy about the biological nature of PD, including conflating symptoms as part of normal aging, and perceived shame as a barrier to treatment compared to White and African-American adults.⁹ We uncovered similar trends among Chinese American PWP in our study, concerning health literacy on the biological nature of PD and the impact of shame on care-seeking behaviors. Our findings also support data from the Massachusetts Health Quality Partners which showed that commercially-insured Asian patients living in Massachusetts reported significantly lower satisfaction with their health care providers compared to White, non-Hispanic patients, and lower levels of provider trust compared to individuals from all other surveyed ethnic groups (Black, non-Hispanic White, and Hispanic).²⁹ Consequently, providers’ open acceptance of traditional Asian health beliefs is a crucial care need for Asian Americans in the state.³⁰ Finally, research has shown that Asian American elders are more likely to use home health care services when living in communities with a higher proportion of residents who share their background.³¹ This pattern aligns with the desire for cultural concordance and familiarity within the care process elicited from our interviews.

We further identified barriers influencing health care access following establishment of care. At the systemic level, barriers included provider and care coordination challenges, poor patient-provider communication, and cultural discordance in the care process. Nationwide, there exists a significant gap between the availability of certified Chinese translators and the number of Chinese individuals with limited English proficiency,³² underscoring the challenges in care coordination and interpreter use that we observed in our findings. Access to professional interpreters is a key need for Asian American patients in Massachusetts,³⁰ which also parallels our findings among Asian American PWP. While nationwide use of complementary and alternative medicine (CAM) among Asian Americans is relatively low,³³ prior qualitative research shows a cultural preference for CAM as a first-line and potentially temporary treatment of disease among Asian Americans.²⁸ This sentiment was further echoed during interviews with our participants.

Regarding individual-level barriers to ongoing care, our interviews further highlighted a cultural hesitancy to question providers for fear of prolonging appointments, similar to findings from previous qualitative research in Asian American breast cancer patients.³⁴ One contrasting finding was a desire for autonomy in the process of care, which differed from previous reviews indicating that care decisions among East Asian individuals were typically family-centered.^35,36

Finally, we identified barriers contributing to lack of research participation among Asian Americans. Participation and belief in the safety and utility of clinical research have been shown to be high among PWP living in Singapore. Potential safety risks associated with clinical trials was the most commonly cited reason among individuals who said that they were unwilling to participate in research,³⁷ which was also supported by findings from our interviews. Our research also revealed that outreach from researchers who share the same or similar ethnicity as the patient may help to enhance research participation. Ethnic concordance has been previously shown to be a significant factor when seeking care,²⁸ but this dynamic has not been previously observed as a consideration during recruitment for clinical studies. To date, research on beliefs and motivations behind clinical research participation among Asian American and other minority populations – particularly among PWP – is lacking.

Given our PWP and care partner demographics, our findings are most representative of the Chinese American population. Despite extensive efforts to recruit a comparable number of Vietnamese participants, we were unsuccessful. Some Vietnamese participants who expressed initial interest in participating ultimately declined due to personal reasons or worsening of their condition. Others expressing initial interest were later unable to be contacted, despite successful initial contact and multiple follow-up phone calls, and we were unable to pinpoint the exact reasoning for this pattern. The experiences shared by our participants may not fully reflect those of individuals living outside the Greater Boston area, particularly in regions with different levels of services for Asian immigrants. While our findings address gaps in the representation of Asian Americans in PD research, future studies should include a broader range of Asian ethnic groups, as experiences with PD may differ across communities. This approach will help to develop a more comprehensive and nuanced understanding of the PD experience within the wider Asian American community.

Based on our results, we propose three recommendations to enhance the health care experience for PWP of Asian descent. First, health education about PD should be thoughtfully tailored to meet the needs of Asian American PWP. Development of linguistically- and culturally-sensitive materials is crucial to effectively engage these communities and provide accurate health education. Such efforts may also help to reduce the stigma and feelings of shame often experienced by PWP. Second, training health care providers on the cultural aspects of care delivery for Asian patients can help to foster comfort and trust, encouraging Asian Americans to seek appropriate care for PD and their broader health needs. Recognizing the cultural health beliefs of Asian Americans is especially important when developing treatment plans. For instance, engaging patients in discussions about established practices, such as Traditional Chinese Medicine, can foster a more collaborative and inclusive care experience. Finally, partnerships with community-based organizations are an effective channel to build trust and improve outreach to Asian American communities, particularly within the context of encouraging active participation in PD research and care.

Supplemental Material

sj-docx-1-pkn-10.1177_1877718X261429265 - Supplemental material for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study

Supplemental material, sj-docx-1-pkn-10.1177_1877718X261429265 for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study by Preston Dang, Ziyue Luo, Xiecheng Chen, Victoria Zhang, Ann Nguyen, Tiffany Mei, Thanh Nguyen, Catherine Chung, Bryan Ho, Chien-Chi Huang and Alice M Tang in Journal of Parkinson's Disease

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Supplemental material, sj-docx-2-pkn-10.1177_1877718X261429265 for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study by Preston Dang, Ziyue Luo, Xiecheng Chen, Victoria Zhang, Ann Nguyen, Tiffany Mei, Thanh Nguyen, Catherine Chung, Bryan Ho, Chien-Chi Huang and Alice M Tang in Journal of Parkinson's Disease

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sj-docx-3-pkn-10.1177_1877718X261429265 - Supplemental material for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study

Supplemental material, sj-docx-3-pkn-10.1177_1877718X261429265 for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study by Preston Dang, Ziyue Luo, Xiecheng Chen, Victoria Zhang, Ann Nguyen, Tiffany Mei, Thanh Nguyen, Catherine Chung, Bryan Ho, Chien-Chi Huang and Alice M Tang in Journal of Parkinson's Disease

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sj-docx-4-pkn-10.1177_1877718X261429265 - Supplemental material for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study

Supplemental material, sj-docx-4-pkn-10.1177_1877718X261429265 for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study by Preston Dang, Ziyue Luo, Xiecheng Chen, Victoria Zhang, Ann Nguyen, Tiffany Mei, Thanh Nguyen, Catherine Chung, Bryan Ho, Chien-Chi Huang and Alice M Tang in Journal of Parkinson's Disease

Supplemental Material

sj-docx-5-pkn-10.1177_1877718X261429265 - Supplemental material for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study

Supplemental material, sj-docx-5-pkn-10.1177_1877718X261429265 for Cultural and systemic barriers in Parkinson's disease diagnosis, treatment, and research participation among Asian Americans: A qualitative study by Preston Dang, Ziyue Luo, Xiecheng Chen, Victoria Zhang, Ann Nguyen, Tiffany Mei, Thanh Nguyen, Catherine Chung, Bryan Ho, Chien-Chi Huang and Alice M Tang in Journal of Parkinson's Disease

Footnotes

Acknowledgements

We would like to thank all our research participants and Stakeholder Advisory Board members for their time, effort, and contributions to this project.

ORCID iDs

Preston Dang

Alice M Tang

Ethical considerations

Approval for this study was granted by the Tufts University Health Sciences Institutional Review Board (ID#: STUDY00002304) on January 31, 2022.

Consent to participate

An information sheet was sent to all participants prior to their scheduled interview or focus group discussion. All participants provided verbal consent at the beginning of the interview or focus group discussion. All but one participant consented to be audio-recorded.

Consent for publication

The information sheet included a statement that respondent quotes may be used in publications. All participants consented to their quotes being used in publications.

Author contributions

P.D. conducted Cantonese and English interviews, translated and transcribed interviews, and contributed to qualitative theme development and the drafting and revision of the final manuscript. Z.L. conducted Mandarin interviews, translated and transcribed interviews, and contributed to qualitative theme development and the drafting and revision of the final manuscript. X.C. conducted Mandarin interviews, translated and transcribed interviews, and contributed to qualitative theme development. V.Z. and A.N. conducted English interviews, transcribed interviews, and contributed to qualitative theme development. T.M. conducted Cantonese and English interviews, translated and transcribed interviews, and contributed to qualitative theme development. T.N. assisted with recruiting potential Vietnamese participants and interpreting qualitative data. C.C. contributed to the interpretation of qualitative data. B.H. contributed to the study design and assisted with recruiting participants. C.C.H. contributed to the conception and design of this study and recruited members of our SAB. A.T. contributed to the conception and design of this study, conducted individual interviews and focus group discussion, and contributed to qualitative theme development and the drafting and revision of the final manuscript. All authors read and approved the final manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded in whole by the Michael J. Fox Foundation for Parkinson's Research, (grant number MJFF-020935).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability

The transcripts generated and analyzed in the current study are not publicly available due to potential for inclusion of sensitive participant data but are available from the corresponding author upon reasonable request.

Supplemental material

Supplemental material for this article is available online.

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