Heterogeneity among refugee populations.

Many participants discussed the ways in which heterogeneity among refugee groups impacted their healthcare needs and access to care. The characteristics and healthcare needs of refugees varied significantly based on factors such as educational levels, socioeconomic status prior to resettlement, geographical setting in their home countries (urban or rural), English proficiency, or the migration history of their ethnic group. For example, some refugees may have differing perspectives on medical procedures such as C-sections, depending on their geographic origin, even if they are from the same country. One health care provider who migrated from Afghanistan as a refugee highlighted this issue.

It depends on where you live. In urban areas, C-section is accepted, and women feel like it’s an easier way to get delivery. But in a remote area, it’s very difficult to formulate a C-section as an option… the reason is (that) women work a lot in a farm. And they (men) don’t want women to be long time in the bed. (Men are afraid that) Her body now is weak so she cannot work as strong as before. So they are afraid of it (C-section). (Interviewee 4, Health care provider)

Moreover, the extent of social support that refugees have access to in the host country appeared to differ based on the history of migration and resettlement modalities—whether they arrive as families or individuals, or in a significant concentration within the same geographical area. For instance, when a substantial number of ethnic groups relocate and form an ethnic enclave, they tend to provide mutual assistance in navigating the system. This support can be very helpful for the refugees if it exists in the area where they are resettled. One researcher explained how this has shaped the Bhutanese refugee community that she worked with.

They are with all their families and community members here. That’s why the family members are available to help … in the case of Bhutanese community, at least they have some support systems within the community to take (medical) appointments and even they try their best to help relatives or somebody for the transportation. (Interviewee 3, Researcher)

Unfamiliarity with preventive care.

Numerous participants highlighted that refugees are not familiar with preventive care. Many refugees come from “areas where the healthcare system broke down” so they “don’t have a functioning primary care and preventive healthcare system (Interviewee 7, Researcher).” Thus, some people were often dependent on traditional medicine when they were ill, as noted below.

Because of the lack of healthcare system back home, they don’t do checkups. So, women don’t do mammograms at all. They never even heard of mammograms. And even all other diseases they don’t check. All they use is traditional medication, something to help them when they’re really, sick. But nobody does checkups back there. (Interviewee 12, Clinical health navigator)

Another stakeholder explained how unfamiliarity with preventive care causes challenges. Refugees may be confused when their doctor recommends screenings, labs, or other preventive care options they are not accustomed to. A refugee settlement agency staff member said, “I would say in a lot of cultures, that (preventive care) is not something they’ve been exposed to, and they don’t really understand why they would need to do that.” (Interviewee 13, Refugee resettlement agency staff).

Chronic conditions and diseases.

Many stakeholders noted that refugees are experiencing “a lot of chronic health conditions,” such as cardiovascular disease, diabetes, and asthma. A family medicine doctor with over 15 years of experience treating and screening refugees made the following observation.

I would say, it’s not just infectious disease that we see, we see a lot of chronic health conditions. Whether that’s cardiovascular disease, or smoking, or obesity, or diabetes, or asthma, there’s a lot of chronic health conditions that we see in the refugee community. (Interviewee 2, Health care provider)

Lifestyle changes after resettlement were identified as a contributing factor to chronic diseases such as diabetes. One researcher and health care provider shared their observations on this issue.

Almost every house has one person with diabetes now because of lots of sweets, cake, and junk. After coming here, they told me that they’re eating more processed food and that they’re eating that type of (junk) food also. (Interviewee 3, Researcher)

A lot of times patients don’t have diabetes because they have not been eating junk and soda and whatever (in their home country). And then they come to the US and they develop it here because all of a sudden there’s availability of all of this kind of stuff. (Interviewee 6, Health care provider)

However, these health conditions often remained inadequately managed due to patients’ unfamiliarity with the US healthcare system and limited knowledge of the conditions. A clinician described how their lack of knowledge about the US pharmacy system makes it challenging to manage their chronic health condition. One respondent stated, “they finished the bottle (of medicine to manage a chronic condition) they got the last time, and they didn’t know how to get the next month’s supply" (Interviewee 1, Health care provider). In particular, acymptomatic chronic conditions or diseases posed significant obstacles to treatment adherence.

The main challenge is getting the client to understand just because you feel okay, doesn’t mean you don’t have hypertension. It’s hard … They just don’t see any reason why they should take medication. (Interviewee 13, Refugee resettlement agency staff)

Refugees lost in a health surveillance system and follow-up.

Despite stakeholders anecdotally reporting a high prevalence of chronic conditions and diseases, the long-term health outcomes of refugees remain largely unexplored. This is partly due to inadequate classification that fail to capture refugee status and the absence of follow-up procedures. A faculty member, who has been studying immigrant and refugee health for over 40 years, expressed her concern regarding this issue.

One issue is that whether a patient is a refugee or not is not very well captured in our electronic health system. So you sometimes may know where a person is from, you may know the primary language, but that doesn’t tell you whether it is a diplomat from Iraq or whether it is a refugee. So it makes it very difficult to identify gaps and to monitor (issues) in refugees over time. So if somebody is a Somali refugee, once they are in the system, they are just identified as black… That is a big gap that needs to be addressed. (Interviewee 7, Researcher)

When asked about the existence of any monitoring or surveillance mechanisms to assess the long-term health of refugees, including chronic disease prevalence and risk factors, both a governmental officer responsible for refugee resettlement programs and a staff member from a refugee resettlement agency confirmed that no such system is currently in place.

No, there’s no following that. (Interviewee 9, Governmental officer)

No, nobody from our agency is following them. (Interviewee 13, Refugee resettlement agency staff)

Complex healthcare system and lack of orientation.

Participants perceived that refugees were struggling to navigate the complex healthcare system in the US. Health care providers also acknowledged that the health system poses challenges even for well-informed medical professionals. One provider stated, “our healthcare system is very complex, and most Americans barely understand it. I’m a well-educated American with a lot of health degrees, and I feel like I barely have my head wrapped around our healthcare system” (Interviewee 1, Health care provider).

For refugees who have recently arrived in the US, this complexity is even more overwhelming. Many refugees originated from countries where scheduling medical appointments was unnecessary, and hospitals served as central locations to see patients, obtain laboratory tests, and acquire prescribed medications. However, in the US, refugees have to find a primary care provider, schedule appointments, pick up medicines or undergo laboratory tests from different locations, and handle complicated tasks such as medicine refills, referrals for specialty care, or addressing medical billing errors. One clinician highlighted how this can create challenges for a patient who is not familiar with different levels of healthcare.

Our healthcare system is extremely difficult to navigate for anybody, including me who’s a doctor. It’s very hard to navigate our system. It’s a mess. … And so when you say like, "Oh, I’m going to refer you to a specialist on this thing," they’re like, "But you’re a doctor, can’t you just take care of that thing for me?" … because they just are not used to having the number of different kinds of doctors and services that we have. (Interviewee 6, Health care provider)

Despite these complexities, many participants voiced concern about the insufficient and brief cultural orientation provided to refugees upon arrival to the US. A resettlement agency staff member stated that the health orientation provided to refugees is sometimes “an hour and that’s it” (Interviewee 8, Refugee resettlement agency staff). The brevity of the orientation is further complicated by the timing of its delivery, which is expected to occur within 30 days after arrival for the majority of refugees. Since this orientation is provided at a period when refugees are grappling with acquiring fundamental knowledge about living in the US, they may find it difficult to remember the information from their health orientation as voiced below.

All refugees are supposed to get a health orientation within 30 days of arrival, but I feel like there is so much happening in those first 30 days that I don’t know how they possibly would retain any of that. (Interviewee 1, Health care provider)

As a result, refugees, often with limited English proficiency, may struggle to recall the information from their health orientation when they need it.

For an English speaker, it’s easy to remember what urgent care is. But for a Persian or a Pashto speaker, oh my God, it’s very difficult to remember what urgent care is and what primary care is. And then they will mix up what was the Medicaid or Medicare…It’s very difficult. (Interviewee 4, Health care provider)

Language barriers.

While many study participants emphasized the importance of language skills for navigating life and healthcare in the US, even refugees who become long-term residents continue to encounter language barriers. Study participants noted that, despite the availability of English classes for refugees, many encountered challenges such as childcare, transportation, and conflicts with work schedules, which hindered their participation. Online options were only accessible to individuals who had both a computer and internet access and were comfortable using them. A stakeholder explained:

Their classes are during the day, they sometimes don’t provide childcare, and they don’t provide transportation. So, the refugees have to be able to take the bus. Many times, in my experience, the refugees would be very good about going initially, but then if they get a job, they really just don’t have the time to go. (Interviewee 13, Refugee resettlement agency staff)

This inability to engage in language classes can significantly impact refugees’ lives. Some participants mentioned that limited language skills hinder some refugees from obtaining US citizenship, thereby denying them access to benefits available for citizens. Learning a new language can be particularly challenging for older individuals or those who struggle with literacy in their native language.

If you are in your forties or fifties, you never go to school, it’s impossible to learn English within a couple of months while doing manual labor job. And the immigration cannot accommodate them to get citizenship unless they pass the test. So, some people stay here for 10, 20 years without getting citizenship because they can’t learn English. They can speak it, but they can’t read or write. So how do you ask someone who is 60 to learn English and write English when they don’t even know how to write their own language? (Interviewee 12, Clinical health navigator)

Additionally, while health care providers receiving federal funding are required to offer interpretation services [22], access to the services beyond clinics closely associated with refugees remained challenging, particularly for specialized medical care.

Once you get outside the few clinics that specialize with refugees, it’s extremely difficult. If a client is referred to a specialist, chances are that specialist is going to say, if you said, do you provide interpretation? They’ll say, "Yeah, we speak Spanish. Great. Well, we don’t need Spanish." It is a huge challenge. (Interviewee 13, Refugee resettlement agency staff)

Promising practices such as cultural health navigators, peer educators, and community health workers.

While numerous participants identified various struggles encountered by refugee communities, many also highlighted promising practices that could potentially contribute to serving these communities. Some clinics employed cultural navigators proficient in various languages to help refugees navigate the system. They assisted refugees in setting up appointments, organizing transportation, accompanying them to medical visits and laboratory tests, and even aiding them in enrolling in social programs. For many refugees, having someone to help them navigate their healthcare needs makes them “more comfortable” (Interviewee 14, Cultural navigator).

Another program connected newly arrived refugee women with other refugee women who had been in the country for longer to provide support in their native language and share insights from their personal experiences. A researcher described, “we called it mentor sister program so that refugee women who have been here for a longer time get trained to work with new arrivals as well” (Interviewee 7, Researcher).