Introduction

The demographic landscape of the U.S. is becoming increasingly diverse. The nation’s foreign-born population accounts for 13 % of the total population, and nearly one in five Americans identify as first or second-generation immigrants [1]. The foreign-born population is also increasing more rapidly than the native-born population (29.8 and 8.3 % population growth respectively between 2000 and 2011) [2]. These trends portend greater influence of immigrant newcomers on the nation’s health and create a pressing need to understand healthcare needs of immigrants and their access to U.S. healthcare systems. Accordingly, the field of immigrant health research has grown considerably in recent years. Yet information gaps persist, often as a result of grouping all immigrants into one category. This masks important distinctions in health needs and outcomes for specific categories of immigrants [3].

This paper focuses on refugee immigrants and their access to healthcare systems in the U.S. Refugees represent 10 % of annual immigration flows to the U.S. [4]. Almost three million refugees from nearly 125 countries have resettled in the U.S. since 1975 [4, 5]. Annually, approximately 40,000–80,000 new refugees who have fled war, torture, and persecution are admitted in accordance with the Refugee Act of 1980 [6, 7].

Refugees are distinct from other immigrants in two important ways. First, immigrants typically tend to be healthier upon arrival compared with their U.S.-born counterparts. However refugees are more likely to immigrate with pre-existing health problems as a result of their turbulent migration histories [8–11]. Second, refugees have established pathways to existing healthcare systems. Under the federal government’s humanitarian resettlement program, refugees are entitled to a brief period of supportive services, including public health insurance [7].

Most research on refugees’ access to healthcare has been conducted outside the U.S., in Europe and Australia. Collectively, this research has identified several healthcare barriers from the perspectives of refugee patients and healthcare providers. For patients, barriers reported include: lack of language supports, difficulties with accessing specialty care, unfamiliarity with referral procedures, limited information on where to find services, confusion about the roles of different health professionals, and overall difficulties with navigating the healthcare system. For healthcare providers, barriers reported include: lack of funding and supports to meet the language and cultural needs of refugee patients, uncertainly about refugees’ entitlements to healthcare, uncertainty about continuity of care, and difficulties with making appropriate referrals [12–20]. While existing research illuminates several healthcare barriers for refugees, these findings cannot be uncritically applied to the U.S. where healthcare and refugee resettlement systems are distinct from other developed countries.

In the U.S., there are few studies examining refugees’ access to healthcare. The handful of existing studies have identified similar barriers as above while emphasizing additional barriers posed by lack of universal health insurance coverage and bureaucratic complexities within the U.S. healthcare system [21–24]. However none of the above studies has examined this issue as it relates to refugees with disabilities and chronic health conditions, who might have unique, more extensive, and longer term healthcare needs compared with the general refugee population. Indeed, research on refugees’ health, much like refugee health policy in the U.S., has tended to focus on prevalence and treatment of acute, infectious diseases [25]. This emphasis on acute diseases persists despite evidence of noninfectious, chronic conditions among resettled refugees (e.g. diabetes, cancer, stroke and arthritis), which could lead to long-term morbidity and functional disabilities [11, 26, 27].

The lack of attention to disabled and chronically ill refugees in the U.S. is egregious. The U.S. resettles more refugees than any other developed country [28]; it is also one of the few countries to prioritize admission of refugees with significant health conditions [29]. Thus understanding healthcare needs and barriers faced by the growing numbers of disabled and chronically ill refugees in the U.S. signifies an important knowledge gap in the field of immigrant health. Filling this gap is an essential first step in eliminating disparities for this high need, high risk group [22, 30].

To this end, a community-based participatory research (CBPR) project was launched in a large metropolitan city in the U.S. Midwest. The project built upon an existing partnership between a local Center for Independent Living serving people with disabilities and a large urban university. The Principal Investigators (two community-based and one university-based) had previously collaborated on disability awareness and cross-cultural dialogue in immigrant and refugee communities. Based on this existing partnership, a new CBPR project was launched with three objectives: (1) to gain a preliminary understanding of healthcare access barriers faced by newly resettled disabled and chronically ill refugees in the U.S., (2) to develop a Community Advisory Board (CAB) with representation from refugee service agencies and refugee communities, and (3) to engage the CAB in identifying research priorities and developing research plans to address barriers. This paper focuses on objective 1.

Methods

Research Framework

We used a community-based participatory research (CBPR) approach. The CBPR approach is defined by active collaboration between researchers, organizational representatives, and community members in all phases of research. Respect for community values, responsiveness to community-identified issues, and integrating knowledge with action to effect community change are fundamental principles of CBPR [31]. Therefore, research driven by CBPR principles has greater expected buy-in among disenfranchised minorities [32]. CBPR is an empirically-supported research approach, with proven success and credibility among refugee [33, 34] and disability communities [35, 36].

Research Design

The purpose of our study was inductive and exploratory. Therefore we used a qualitative rapid ethnography research design. This research design involves adaptation of traditional ethnographic methods for capturing the broad picture and overall context surrounding an issue while minimizing time demands [37]. Specific methods were selected and used sequentially to achieve the project’s objectives. First we conducted semi-structured key informant interviews to collect foundational data on the types and sources of healthcare access barriers experienced by disabled and chronically ill refugees (objective 1). Next, we attended various community events to get to know the community. Key informants (KIs) and other community members were then invited to join a CAB (objective 2). Finally, systematic group facilitation techniques [38] were used to engage CAB members in developing logic models and research plans (objective 3). The project was approved by the sponsoring university’s ethics review committee. Methods and findings related to objective 1 are elaborated below.

Participant Recruitment

Selection criteria for KIs included: (1) men and women age 18 and older of diverse race and ethnicity, (2) members of refugee communities or community leaders and/or staff at refugee resettlement agencies, refugee health clinics, or refugee-serving mutual aid associations, (3) able to provide informed consent and participate in data collection. A consultant on the project who had extensive ties with local refugee service providers served as the focal point for recruitment. First, the consultant and the co-PIs developed a list of local refugee-serving organizations whose staff could be potential KIs. These individuals were invited to participate in interviews using a prepared script to describe the project and its goals. Additional KIs were identified through snowball sampling. Recruitment was continued until the point of theoretical saturation i.e. until the team agreed that similar themes were being repeated across interviews and that additional interviews would not yield new insights [39].

Data Collection

Semi-structured interviews were conducted with all KIs. One of the community co-PIs collaborated with the academic co-PI in developing an interview guide. Interviews were intended to capture the informants’ perspectives on healthcare access barriers and unmet health-related needs among resettled refugees with chronic health conditions and disabilities. Disability was defined in line with the Americans with Disabilities Act of 1990 and its 2008 amendments as: (1) having a physical or mental impairment that substantially limits one or more major life activities; OR (2) having a record of such an impairment; OR (3) being regarded as having such an impairment [40]. Informants were also asked about their interest in partnering with the CBPR project; what resources they could offer the partnership; and referrals of other potential KIs (Table 1).

Table 1 Key informant interview topics
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Although we had budgeted for interpreters/translators, none of the informants required this accommodation. Therefore all interviews were conducted in English, either by phone or in person, and lasted 30–90 min. One of the community co-PIs teamed up with the academic co-PI to conduct interviews. The co-PIs convened for debriefing after each interview. Detailed hand-written notes were recorded at each interview and typed immediately after into a word-processing file. These notes were recorded by the academic co-PI who has extensive experience in taking notes during interviews having previously worked as a research associate in federally funded studies.

Data Analysis

Data analysis proceeded in a systematic, inductive manner using the grounded theory technique [39]. First, the academic co-PI and the community co-PI, who had been the primary data collectors, separately reviewed notes from all interviews. A debriefing session followed during which emerging and oft-repeated themes were identified and compiled into a code list. Using this preliminary code list as a guide, the academic co-PI and both community co-PIs separately completed raw coding of all interview data. All three coders then convened to discuss codes and code definitions. Subsequently the academic co-PI refined and circulated an updated code list. Another round of coding and debriefing followed. Coded data files from all three coders were then merged into a single word-processing document. Discrepancies in coding were discussed at length. Following recommendations from the literature [41], our goal was not to achieve complete consensus among the three coders but rather to discuss sources of disagreement and their potential to elucidate our findings. Preliminary findings as well as final themes and subthemes were periodically shared with CAB members as a process of member checking to verify the trustworthiness of our analyses. CAB members also provided feedback on various drafts of this article [42].

Results

Eighteen KIs (5 male, 13 female) participated in interviews. These individuals represented a wide variety of stakeholders including (1) representatives of state agencies (Bureau of Refugee and Immigrant Services; Department of Public Health), (2) refugee healthcare providers (affiliated with refugee-serving clinics), (3) refugee social service providers (affiliated with resettlement agencies which provide initial supportive services to refugees), and (4) community leaders from three of the largest refugee groups since 2008 (Iraqi, Burmese and Bhutanese).

Data analysis revealed three broad themes that encapsulated many of the barriers faced by disabled and chronically ill refugees in accessing needed services: (1) inadequate health insurance, (2) language and communication barriers, and (3) a complex maze of service systems. Within each of these areas, barriers operate at system, provider, and individual levels. The decision to classify barriers thus was inspired by an in vivo code, a verbatim quote from one of the KIs. During data analysis, all three coders generally agreed on the type of barrier (health insurance versus language/communication versus complexity of services). Disagreements frequently arose when classifying barriers by level (system versus provider versus individual). Further discussion helped clarify that most barriers do not operate in isolation. For example, system-level barriers can exacerbate barriers at individual and provider levels. Figure 1 illustrates this relationship. The figure also shows how the three broad themes are not insular, but rather influence one another. These themes are described below with verbatim quotes from KIs where appropriate.

Fig. 1
figure 1

Barriers to healthcare access

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Inadequate Health Insurance

All refugees are eligible for public health insurance after arrival in the U.S. Yet this does not always guarantee access to services owing to multilevel barriers described below.

System Level Barriers

Healthcare for adult refugees without dependents is covered under Refugee Medical Assistance (RMA), a 100 % federally-funded program that provides up to eight months of coverage after arrival. Until they receive their RMA card (a 4–5 week wait), refugees can get primary and emergency care but no specialized or non-emergency care. Healthy and non-disabled refugees are mostly able to complete all necessary medical interventions such as immunizations within eight months of RMA coverage. However those with disabilities and chronic health conditions require specialized and longer-term care. Our KIs overwhelmingly agreed that eight months of RMA was woefully inadequate for this group. They also alluded to overall funding shortfalls that preclude extending RMA eligibility.

Refugees with a qualifying disability or health condition can apply for Supplemental Security Income (SSI) with concomitant Medicaid coverage as a source of health insurance after eight months of RMA. However KIs reported that denial of SSI applications was common for refugees owing to insufficient proof of disability. Many refugees were described as falling in the “gap” category, not medically disabled enough to qualify for SSI but yet unable to work as a result of their disability combined with other factors such as limited English proficiency. In the words of one provider, “It’s very narrow, cases that SSI will accept, a lot of times [refugees] get denied even if they have a serious condition”.

Provider Level Barriers

Supplemental Security Income applications require very specific documentation from a qualified medical professional, often a specialist, about the applicant’s health/disability condition and how it affects daily functioning. To procure this documentation, refugees with disabilities and chronic health conditions need to be examined by a relevant specialist. KIs reported difficulties in getting appointments with specialist doctors, many of who were cited as being reluctant to accept RMA. As one refugee health provider said, “People just don’t get the services they need. Some [specialists] in the city have a big heart but their institutions will prevent them [from taking on a refugee’s case].”

The few specialists who accepted RMA were either located far away or had long waiting lists, which pushed refugees’ appointments beyond their eight months of RMA eligibility. Some refugees had been connected with charity programs, but participation of specialists in charity programs was also reportedly low.

Barriers to specialty care, combined with health insurance shortfalls also hindered refugees’ access to assistive devices such as mobility equipment and hearing aids. One provider recounted a family that had been struggling to get a wheelchair for their young son, “The father was taking him to school in a shopping cart and the school authorities were freaked out”.

Individual Level Barriers

KIs described refugees as having limited or no prior exposure to medical insurance systems. Being uninformed about insurance rules and regulations, they did not know what services were covered under their insurance and how to request these services. One service provider described the situation thus:

They spent so much time with nothing, they haven’t even considered what’s possible…if you were never exposed to it, how would you know to ask for it?

Language and Communication Barriers

In the year preceding this study, refugees from 62 countries, with distinct languages and dialects, had been resettled in the state where this study was conducted. This created complex language demands at all levels of the healthcare system.

System Level Barriers

KIs described the U.S. healthcare system as ill-equipped to respond to the needs of linguistically diverse patients. As one refugee health provider stated:

The current system is focused on how many patients you can see and how much revenue you can generate. So for example, if you have a refugee patient with diabetes who has no idea what blood glucose is, [it is difficult] explaining at a rudimentary level to someone who does not speak English and trying to do this in a 15 to 20 minute visit.

An even bigger challenge was accommodating the communication needs of deaf refugee patients, many of who communicate using their home country’s sign language or have minimal formal sign language skills. In the words of one refugee health provider:

Appointments with American deaf persons who sign ASL [American Sign Language] generally tend to be longer. With two interpreters [required for deaf refugees], it triples the time you need as everything needs to be interpreted twice. Another deaf patient had no sign language skills and he had to take [tuberculosis] medication on a daily basis. [We] were unable to explain this to the patient adequately.

Another systematic barrier reported by KIs was the limited availability of English language training for newly arrived refugees. Owing to financial constraints, refugee agencies were able to offer an average of only six months of entry-level English language training. KIs believed that this rudimentary training was insufficient to enable refugees to manage their own healthcare. This situation particularly worked against disabled and chronically-ill refugees who needed to navigate between multiple appointments and service systems.

Provider Level Barriers

Multiple KIs noted that healthcare providers did not always provide medical interpretation to accommodate the language needs of refugee patients. In the words of one KI, also a healthcare provider, “Because refugees get [public aid] and speak languages no one has heard of there is no dedication among providers to provide interpreters. This creates an enormous healthcare gap.”

Lack of language access disproportionately affected disabled and chronically ill refugees who needed specialty care, an elusive commodity to begin with. As stated by one refugee case manager, “It is hard for case managers to advocate for language interpretation with the one specialist they manage to find who will see their [refugee] client.”

Even when healthcare providers were motivated to “do the right thing,” they were hindered by lack of resources, limited knowledge of interpretation standards, and difficulties with finding trained interpreters conversant in refugees’ native languages. Even with medical interpreters present, appointments with refugee patients, who had complex health conditions and disabilities, were described as extremely challenging:

[The] process [is] really hard, almost impossible. You have to have everything in the room, you have to make constant calls to prostheticians, case managers…While this is true for English-speaking individuals with low education levels, if you need to use language line services, it could be minutes or an hour may be more. Unlike Spanish or French, I have absolutely no idea what interpreters say. I ask them a question like ‘Do you walk at home?’ It’s a yes/no question. I hear da–da-da, da–da-da. And the answer I get is ‘No’. It’s a really long process.

Difficulties with finding interpreters especially hindered healthcare access for refugees with mental health disabilities. KIs described cases where refugees felt discouraged from using mental healthcare due to long wait times for appropriate interpreters.

It is difficult to convince someone this [mental health care] is something that will benefit them, but if they encounter barriers to accessing the needed services then that is a barrier for them to continue seeking services.

Individual Level Barriers

Lack of English proficiency and concomitant health literacy were reported as pervasive problems among refugees. However disabled and chronically ill refugees were described as being more disadvantaged by lack of these skills as indicated by the following quotes:

It’s intimidating going to [the pharmacy] and getting refills due to the language barrier… it’s hard, coupled with having a chronic condition or pain which would make things hard for anyone, are intensified in a refugee population.

Doctors think that clients are being non-compliant and this affects the care they are able to receive. This is especially a concern if the follow-up care includes a complex regime of medications and care.

Complex Maze of Service Systems

The sheer complexity of the refugee resettlement system, and of related systems of health and social services in the U.S., created another set of challenges.

System Level Barriers

The U.S. refugee resettlement program involves multiple entities including federal departments, state agencies and local resettlement agencies and health clinics. Systematic efforts to collect and monitor health data across these various entities were found to be lacking.

Our research revealed that disability and chronic health conditions were not reliably identified during pre-arrival health screenings required for all refugees. When identified, these conditions were recorded on refugees’ biodata forms, which were relayed to local resettlement agencies but not to local health departments. Furthermore, the information in refugees’ biodata forms was frequently inadequate. For example, forms noted a refugee’s need for a mobility aid but did not specify if the person would benefit from a wheelchair, walker or cane. The quality of documentation also appeared to vary widely depending on the country from where refugees were being resettled. As articulated by a KI who worked at a resettlement agency:

We’ve had clients from one country where the medical documentation said they were allergic to mangoes, [whereas] a client from another part of the world did not know they had terminal cancer.

These systemic inadequacies meant that refugee service providers often lacked information about refugees’ disability and health-related needs before their arrival.

KIs also discussed the complexity of health and social service systems in the U.S. Disabled and chronically ill refugees needed to connect with mainstream healthcare, specialized healthcare, and disability-specific social services. To navigate across these fragmented and disconnected services, refugees needed intense support from their case managers. However funding shortfalls had led to recent cutbacks in the duration of case management supports available to refugees. For disabled and chronically ill refugees, this situation was described as “not enough time to get the system here”.

Provider Level Barriers

KIs, many of who worked as case managers at resettlement agencies, acknowledged their own limited familiarity with health and disability issues. While some were savvier than others, most reported feeling beleaguered by the complex and fragmented system of disability services. As stated by one provider, “that is not our primary area of expertise, so there are some bumps in the road”. Lacking any formal healthcare or disability training, these individuals were also ill-equipped to discern discrepancies in refugees’ pre-arrival medical documentation. In some instances this had resulted in erroneous referrals for follow-up care and delays in connecting refugees with disability-related social services. In the words of one KI:

I’ve seen how long it takes for a refugee person to access services which he or she is eligible for after arrival. It can take up to six months where in ordinary circumstances it would take may be a month.

Individual Level Barriers

According to KIs, many refugees had immigrated to the U.S. after having lived in chaotic refugee camps. They were therefore not exposed to organized systems of care and felt overwhelmed when confronted with the task of navigating U.S. health and social service systems. In the words of one service provider:

It is a radical change if you’re coming from a rural camp. So there are lots of adjustment issues especially if you don’t speak English fluently. It’s confusing for Americans to go through these bureaucracies!

Discussion

Our findings present a broad overview of healthcare access barriers encountered by refugees with disabilities and chronic health conditions after their resettlement in the U.S. While few of our findings are distinctive, others are corroborated by previous literature on this topic.

Congruent with our findings, previous research, both within and outside the U.S., identifies lack of language supports as one of the commonest barriers to healthcare access for resettled refugees [12–20, 22–24, 43]. In the U.S. in particular, the marked diversity in refugees’ linguistic and cultural backgrounds has reportedly overwhelmed state refugee health programs and clinics [44, 45]. These reports substantiate the provider accounts described in our study.

Another of our study findings that is consistently reported across previous research relates to refugees’ difficulty in navigating healthcare systems in their countries of resettlement [12, 17, 20, 23, 24]. In our study we found this barrier to be exacerbated by language proficiency and health literacy limitations at the individual level.

One of our study’s findings that is strikingly unique to the U.S. relates to refugees’ limited period of eligibility for public health insurance. Our finding is supported by other U.S.-based studies documenting the lack of long-term health insurance in refugee populations and its negative consequences on their access to healthcare [23, 46].

Thus many of the healthcare barriers we found in our study are consistent with barriers that have been previously reported in the literature. However a unique contribution of our study is that it underscores the greater adverse effects of these barriers on the health and well-being of refugees with disabilities and chronic health conditions. We also identified previously unreported barriers such as limited disability and health-related expertise among refugee case managers and lack of systematic information-sharing among the various agencies involved in the U.S. refugee resettlement program.

The overall goal of our CBPR project was to use this foundational knowledge about healthcare barriers as a catalyst for policy and practice changes in refugee healthcare, and as a springboard for future research. In keeping with this goal, we discuss policy, practice, and research recommendations below.

Policy Recommendations

First there is a pressing need for interagency coordination in gathering and monitoring chronic health and disability data among U.S.-bound refugees. One suggested pathway is for the Centers for Disease Control and Prevention to issue standard assessment and documentation guidelines for pre-arrival health screenings of refugees. Additionally, information from these health screenings must be relayed consistently to local entities before refugees’ arrival. A model for this type of information-sharing exists in Virginia and involves collaboration between resettlement agencies, the local health clinic and public health department [7].

With regard to language access in healthcare, there is a need for stronger enforcement of Title VI of the Civil Rights Act which prohibits language-based discrimination in federally-funded health facilities [47]. There is also a need for specific and institutionalized guidelines on accommodating language needs in healthcare settings, such as those implemented in New York City and New York State requiring all public hospitals to have a language access plan and to provide free interpretation for patients within 10 to 20 minutes of arrival [48, 49].

On the health insurance front, refugees’ time-limited eligibility for healthcare coverage is likely to change after implementation of the Affordable Care Act (ACA). Under the ACA refugees, like U.S. citizens, will have access to affordable coverage through Health Insurance Exchanges or Medicaid expansions (the latter based on their state of residence). However there is some uncertainty about refugees’ access to comprehensive long-term disability services under expanded Medicaid versus traditional Medicaid [50]. Regardless, refugees with disabilities will need to be educated about the various health insurance options available under the ACA and services covered under each option.

Practice Recommendations

Policy-level changes must be complimented with practice-level measures. For example interagency information-sharing will only be useful if key end users of that information, mainly refugee case managers, know what to do with it. Our study found that refugee case managers had limited familiarity with disability-related local resources and services. Consequently, greater collaboration is needed between local refugee and disability service networks in the form of in-service trainings and educational forums. This will improve connectivity between these disparate service providers and enable appropriate referrals.

In the area of language access, there is a pressing need to expand the pool of trained medical interpreters who are fluent in the native languages of recently resettled refugee cohorts. One way to achieve this is to identify and train qualified individuals from refugee communities. This strategy will not only help redress interpreter shortages, but also enhance employment avenues for refugees. For example, a program has been developed in Fort Worth, Texas where ‘cultural ambassadors’ from refugee communities are trained to lead mental health support groups in refugees’ native language [51]. Innovative strategies are also needed to improve the efficiency and effectiveness of language-discordant clinical encounters involving refugees with complex medical and rehabilitation needs. Health information technologies offer a possible solution worthy of further consideration. For example, the Asian Health Coalition in Illinois has developed a collection of health-related informational videos in multiple languages. Videos are downloaded on portable electronic devices. Bilingual health promoters use these devices to educate consumers during one-on-one home visits [52]. Such educational opportunities can be used to prepare refugee patients for medical appointments. This will ease and expedite their communication with healthcare providers during clinical visits.

Finally more needs to be done to educate and empower disabled and chronically ill refugees to independently navigate U.S. health and social service systems. The literature recommends harnessing refugee’s own social networks and community resources for this purpose [13–15, 17]. Community health workers, Americorps volunteers, and peer navigators, including disabled refugees who have gained a level of familiarity with U.S. service systems, can all be considered useful resources to train and educate refugee newcomers. In addition portable and patient-held health records might also ease the burden of navigating between various healthcare providers.

Research Recommendations

The practice innovations described above need to be evaluated through systematic research so as to generate a body of evidence-based practices and guidelines for eliminating healthcare access barriers faced by disabled and chronically ill refugees. In addition to establishing effectiveness of innovative service delivery strategies, future research studies must also examine their economic impact by examining healthcare utilization and associated costs. There is also a need for research comparing the effectiveness of different service delivery models, such as integrated care in a single refugee clinic versus a dedicated network of primary care physicians and specialists. Future research is also needed to monitor the impact of the ACA and how impending changes in health insurance coverage affect healthcare access for refugees with disabilities and chronic conditions.

Limitations

It is important to consider this study’s findings along with its limitations. Findings are based on a small sample of KIs within a geographically-circumscribed area, and as such are not generalizable. However, many of the findings are corroborated by other literature. Also, all the information presented in this paper was sourced from service providers, state agency representatives, and refugee community leaders. Though it is good foundational knowledge, this information needs to be supplemented with direct data collection from refugee individuals and families. The authors intend to build on this research in future iterations of the current CBPR project.

New Contributions to the Literature

The refugee population represents a neglected, but growing base of healthcare consumers in the U.S. Thus far research on refugee health has been limited in its focus on management of acute, infectious diseases. By focusing on refugees with chronic health conditions and functional disabilities, this study adds a critical piece that is currently missing in the field of immigrant and minority health.