Barriers to health care for undocumented immigrants: a literature review.

With the unprecedented international migration seen in recent years, policies that limit health care access have become prevalent. Barriers to health care for undocumented immigrants go beyond policy and range from financial limitations, to discrimination and fear of deportation. This paper is aimed at reviewing the literature on barriers to health care for undocumented immigrants and identifying strategies that have or could be used to address these barriers. To address study questions, we conducted a literature review of published articles from the last 10 years in PubMed using three main concepts: immigrants, undocumented, and access to health care. The search yielded 341 articles of which 66 met study criteria. With regard to barriers, we identified barriers in the policy arena focused on issues related to law and policy including limitations to access and type of health care. These varied widely across countries but ultimately impacted the type and amount of health care any undocumented immigrant could receive. Within the health system, barriers included bureaucratic obstacles including paperwork and registration systems. The alternative care available (safety net) was generally limited and overwhelmed. Finally, there was evidence of widespread discriminatory practices within the health care system itself. The individual level focused on the immigrant's fear of deportation, stigma, and lack of capital (both social and financial) to obtain services. Recommendations identified in the papers reviewed included advocating for policy change to increase access to health care for undocumented immigrants, providing novel insurance options, expanding safety net services, training providers to better care for immigrant populations, and educating undocumented immigrants on navigating the system. There are numerous barriers to health care for undocumented immigrants. These vary by country and frequently change. Despite concerns that access to health care attracts immigrants, data demonstrates that people generally do not migrate to obtain health care. Solutions are needed that provide for noncitizens' health care.

Background

Over the last decade, international migration has continued to rise despite the efforts of many countries to tighten their borders.1 Factors such as conflict, discrimination, and the lack of employment opportunities in countries of origin contribute to migration patterns. Today, countries have used a variety of strategies to dissuade immigrants from crossing their borders ranging from border patrol to identity checks, detention, and deportation.2,3 With the unprecedented rates of migration, policies that disincentivize migration have spread to health care. Internationally, many countries, including the US, European nations, Scandinavia, Canada, and Costa Rica, have promulgated a range of policies that limit access to health services.4–8 In the US for example, the Affordable Care Act excludes undocumented immigrants from accessing health insurance.9 In the European Union, policies that limit undocumented immigrants’ access to health care are widespread and vary substantially. These policies range from denying all access to providing limited access to emergency and preventive care.4

Throughout the literature, undocumented immigrants/migrants, also referred to as illegal, irregular, and noncitizen, are seen as underutilizing the health care system.10–12 This underutilization not only puts their health at risk, as is the case with infectious diseases, but may also put the general public’s health at risk.13–15 Many papers examine the sequelae of undocumented immigrants’ limited access to health care.16,17 This includes the lack of follow-up for tuberculosis and HIV/AIDS, low immunization rates, and untreated mental health issues.14,15 A number of factors are presumed to exacerbate undocumented immigrants’ limited access to health care. These include their lack of knowledge, bureaucratic issues, confusion about rules and regulations, and discrimination.18 To date, however, we have not encountered a review focused specifically on the variety of barriers to health care beyond legal regulations that undocumented immigrants currently face. Nor have we found a review of strategies that have been used or might be used to alleviate these barriers. Therefore, this paper is aimed at reviewing the literature on barriers to health care for undocumented immigrants and identifying strategies that have or could be used to address these barriers.

Methods

To address our main study aim we conducted a literature review using a systematic approach to examine peer-reviewed literature related to barriers to health care faced by undocumented immigrants. We also identified recommended strategies for solutions within the literature reviewed.

Search strategy

Our literature search was conducted using PubMed by one author (BF) to capture our three main concepts: immigrants, undocumented, and access to health care. We limited our search to articles written in English over the last 10 years. Various terms for immigrants were used, including immigrants, foreigners, aliens, and migrants. In addition, a variety of search terms for undocumented were used, including undocumented, illegal, irregular, and noncitizen. The full search strategy is provided in the “PubMed search strategy” section of Supplementary materials. The search was designed to retrieve articles on a wide range of subtopics within the main topic but without being exhaustive, as would be required for a complete systematic review. By incorporating systematic review methods into the search, this study occupies a middle ground between traditional narrative reviews, which do not require documentation of search methods or defined criteria in their choice of articles for inclusion, and systematic reviews. We applied our search criteria on April 8, 2015 and identified 341 journal article records (Figure 1). All records were exported to an EndNote database for inclusion/exclusion evaluation.

Figure 1

Flow chart of review process.

Article selection

We conducted a three-stage screening process starting with a title review followed by an abstract review and ending with a full-text article review. Articles were included if they addressed barriers to health care for undocumented immigrants and/or recommendations for strategies to solve problems of access. For the purposes of this search, editorials and opinion pieces were excluded.

In our title review stage, three authors (KH, MA, LZ) independently reviewed the journal article titles to determine whether they were relevant or irrelevant. Based on this title review, 123 articles were included for review and 218 were excluded. In our second stage, the authors independently screened the abstracts of the remaining 123 articles and determined that 74 initially met eligibility. Three reviewers examined full-text articles for eligibility. Seven articles were excluded as they were deemed to be opinion pieces and one article was deemed irrelevant. After excluding these articles, 66 articles were included in the qualitative analysis that followed (see Table S1; reviewed articles).

Abstraction

The reviewers then developed a data abstraction form and independently applied it to three eligible articles. They then reviewed their findings and developed an initial list of categories of barriers (eg, fear of deportation and insurance). They independently abstracted information from 10 to 12 articles each and met to review the tool, finalizing the list of categories of barriers. At this stage, one category was removed and four were added, yielding the finalized abstraction tool. Authors were instructed to highlight any themes that were not captured by the abstraction tool; however, no further key themes emerged. Once abstraction was complete, two authors (KH, LZ) met to review all of the data and consolidate the themes into categories for both barriers and recommendations.

Results

Barriers

The final categories for barriers identified from the literature represent the multiple levels where the barriers to health care for undocumented immigrants exist. These categories include barriers experienced in the policy arena, in the health care system, and at the individual level (Table 1). The policy arena focused on issues related to both law and policy including access to insurance for undocumented populations and limitations to the type of health care that they could utilize. The health care system focused on bureaucracy, capacity, and the discriminatory practices that were present. The individual level focused on the undocumented immigrants’ fears, stigma, and lack of capital (both social and financial) that, in turn, created barriers to health care.

Table 1

Barriers to health care experienced by undocumented immigrants

Category	Subcategory	Description	Number (%) of articles	References
Policy arena	Law/insurance	Legal barriers including barred access to insurance by law	50 (76)	1,4–8,13,16,20,22–62
	Need for documentation to get services/unauthorized parents	Requirements that individuals show documentation to get health care services, often leading unauthorized parents to avoid care for authorized children	18 (27)	1,2,6,13,36,38,43–45,51, 56–58,63,64
Health system	External resource constraints	Constraints beyond individual’s ability to pay for services including work conflicts, lack of transportation, and limited health care capacity (such as lack of translation services, cultural competency, and funding cuts)	24 (36)	1,2,6,13,36–38,40,43–45,49, 51,56–58,63,64
	Discrimination	Discrimination on the basis of documentation status resulting in stigma experienced by undocumented immigrants	22 (33)	2,5–7,19,20,23,29–32, 34,35,41,42,45,47,50,57,59, 61,63–65
	Bureaucracy	Complex paperwork or systems required to gain access to health care	17 (26)	1,2,8,16,19,20,24,36–38,40,41, 44,45,48,49,54,57,63–66
Individual level	Fear of deportation	Concerns about being reported to authorities if they utilized services or provided their documentation	43 (65)	2,4–8,13,16,20,23–25,29, 31,33,34,36–38,40,41,43–46, 49–51,53,56,57,59,60,62–70
	Communication ability	Not speaking or understanding the dominant language to communicate with health care providers. Also cultural challenges to understanding the nuances of another culture and expressing one’s problems so that they are understood and not ignored	24 (36)	7,19,24,27,28,29,31,34, 36–38,41,42,44,47,53, 56,59–61,63,64,65,67
	Financial resources	Lack of personal financial resources to pay for services	30 (45)	1,6,8,13,22,23,26,27,29, 30,33,36–38,41,44–48,53, 57,60,62,63,65,67,71,72
	Shame/stigma	Not wanting to be a burden to society or experiencing shame when seeking services and concerns about being stigmatized when seeking services	7 (11)	19,36,38,41,45,62,64
	Knowledge of the health care system	Little knowledge about how the “system” works, what rights to health care exist, and how to navigate the health care system at all levels	22 (33)	7–9,26,28,31,33,34,37,41, 44,47,53,54,57,58,60,62, 63,66,72,73

Policy

National policies excluding undocumented immigrants from receiving health care were the most commonly cited barriers to health care. Three quarters of the articles described legal barriers including denying access to insurance. In some nations, active surveillance of providers led to the denial of care as providers feared losing their medical licenses or criminal procedures. A commonly cited mechanism for excluding undocumented immigrants from health care was laws limiting access to insurance. Because insurance was generally required for affordable care or required to receive services at all, these laws effectively barred access to care. The fact that medical repatriation was allowed in many countries – that is, repatriation of a sick individual to the country of origin against an individual’s will for the purposes of medical care (which is often insufficient in the country of origin) – led to avoidance of care. In addition, 27% of articles described requirements that individuals show documentation to get health care services as major barriers to care. Often, this need for documentation “spilled over” and affected authorized children of unauthorized parents, who did not seek care for their children because of the inability to provide documentation for themselves.

Health system

Health system barriers included external resource constraints, costs to the individual, discrimination, and high bureaucratic requirements. External resource constraints – or constraints such as work conflicts (eg, health care offered during work hours and fear of losing job due to time off seeking care), lack of transportation, and limited health care capacity (eg, lack of translation services, cultural competency, and funding cuts) – were identified in 36% of articles. One area where there was particularly limited capacity was in mental health care for undocumented immigrants. One third of articles discussed discrimination on the basis of nativity status; for some subpopulations, discrimination on the basis of nativity intersected with other forms of discrimination such as sexual discrimination, placing subpopulations at particularly high-risk of not receiving care. Finally, complicated bureaucracies created insurmountable barriers for not only undocumented immigrants but also providers wanting to provide care to immigrants; 26% of articles described this issue. Often bureaucratic regulations led to extensive paperwork requirements that were too complicated and costly to complete.

Individual

Individual barriers included fear of deportation, communication ability, financial resources, shame/stigma, and knowledge about the health care system. Fear of deportation, whether real or imagined, was identified as a barrier in 65% of articles. Undocumented immigrants reported avoiding health care and waiting until health issues were critical to seek services because of their concerns of being reported to authorities. This was seen in countries as diverse as France, the US, and Denmark. A second barrier – noted in 36% of articles – was communication, which not only included the inability to speak the language of the dominant culture but also included cultural discomfort with the way in which the dominant culture communicated. It was noted that undocumented immigrants were unable to communicate their health concerns to care providers or were misunderstood by those providers. For example, in one article, undocumented immigrants felt that the emergency room physicians did not fully believe their symptoms.19 Lack of financial resources was also a significant barrier, as noted in 45% of articles, and was particularly true in countries where undocumented immigrants were excluded from all health care services or had no access to insurance (the UK and Denmark). Eleven percent of papers reported the issue of shame and/or stigma as a barrier for accessing health care. Undocumented immigrants did not want to “be a burden on the system” or felt that they would be stigmatized if they sought services even in countries where services were available. Lastly, the final individual barrier that was identified was a lack of knowledge of the system itself. Undocumented immigrants often did not know what services were available to them nor what their rights to health care were. In addition, immigrants often did not know how to utilize the health care system, particularly when additional requirements were needed (ie, France’s requirement to obtain authorization prior to accessing services).20 This was identified as a barrier in 33% of the reviewed articles.

Recommendations

We identified five major categories of recommendations in the reviewed papers relevant to addressing barriers to health care for undocumented immigrants (Table 2). These categories are related to advocacy for policy change, insurance options, expansion of the safety net, training of providers to better care for immigrant populations, and education of undocumented immigrants on navigating the system.

Table 2

Recommendations for improving barriers

Category	Description	Number (%) of articles	References
Advocacy/legal change	Expand health care access to all regardless of status, delay deportation for those in care until the course of treatment is completed, make undocumented immigrants documented and give full rights to health care	31 (47)	1,2,8,16,22,24,25,29,31, 35,37–41,45,48–51,53, 57–59,61,65,66,71,73,74
Insurance	Allow all residents to have access to state-funded limited network health plan, “paid” or subsidized insurance options, or provide insurance to all workers regardless of status	9 (14)	1,8,23,44–46,48,58,59
Expansion of the safety net	Expand the capacity of public, nonprofit and free clinics to render care to the population, especially for public health services such as communicable diseases, maternal and child health, and preventive care Provide health and education in nonprofit social service or faith-based organizations Enhance support for safety net providers through state-funded vehicle	18 (27)	7,8,31,32,34–37, 40,44,60,63,64,66, 68,71,73,75
Training providers	Train providers to better understand the needs of their immigrant patients and utilize interpretation services Train providers and update them on legal mandates within the country	10 (15)	8,13,16,19,33,37,41,56,64,68
Education and outreach to undocumented immigrants	Outreach to specific immigrant communities to educate on the current laws and the system, especially education regarding rights to health care Provide culturally appropriate navigators in health care environments to help undocumented immigrants’ access services	15 (23)	2,19,28,34,36,37,40,41,44, 46,47,59,60,69,72

Advocacy for policy change included a range of possible legislation to allow either full access to health care or varying levels of access such as public health services. Insurance options included special insurance programs through the state available to undocumented immigrants and/or full insurance benefits to employees regardless of their status. Expansion of the safety net focused on increasing the capacity of safety net providers (free clinics, state clinics, federally qualified health centers and public hospitals, and public health clinics) to service the population and receive reimbursement. In addition, strategies to employ sliding fee scales to accommodate low-income individuals and the use of voluntary organizations were mentioned. Training of providers included both training in the legal mandates of the individual country and training in cultural competency. Education for immigrants included providing specialized linguistically appropriate information on how to navigate the health care system and on what rights were afforded to undocumented immigrants. Authors also suggested using navigators to help undocumented immigrants maneuver through the health care system.

Advocacy/legal change

A variety of advocacy recommendations to change the existing laws were suggested in the majority of the papers reviewed (47%). These included not only changing laws to provide full access to care regardless of citizenship but also promoting legislation that would allow delayed deportation until treatment was completed. Others recommended major immigration reform that would grant legal status to undocumented immigrants after some period of time, thus making health care exclusion laws irrelevant.

Insurance options

Several papers suggested newly configured insurance options to support undocumented immigrants’ access to health care. These included a range of options from a state-funded insurance plan to a low-cost insurance plan with a limited network. Most of the insurance strategies recommended required undocumented immigrants to financially contribute at some level in order to access care. Fourteen percent of papers recommended changes in insurance options.

Expansion of the safety net

Twenty-seven percent of papers identified the need to expand the existing safety net to accommodate the needs of undocumented immigrants. This included expanding public and free clinics and hospitals, particularly for conditions that put the public’s health at risk (ie, tuberculosis [TB], and sexually transmitted diseases) or those related to maternal and child health (obstetrics and preventive care). They also noted that current voluntary organizations such as food banks could be important health care providers, particularly for prevention and health education. Many papers noted that the safety net system did not currently have capacity to take on this role and called for increased state support to do so.

Training of providers

A number of papers (15%) noted that providers themselves needed additional training to appropriately care for undocumented immigrants. A focus on cultural competency was needed to improve existing services as well as any new services. In some of the papers, it was also noted that providers did not adequately understand the current policies on access and might turn undocumented immigrants away based on false information. Therefore, a number of papers recommended additional training to keep providers up to date on changing legislation related to access.

Education and outreach

Lastly, a number of papers (23%) argued for education and specialized outreach to the undocumented immigrant community to facilitate their utilization of the health care system and their understanding of the policies relevant to them in the specific country. Several papers also recommended the use of navigators or cultural ambassadors to help undocumented immigrants maneuver through the bureaucracy and obtain needed care.

Discussion

In this literature review, we identified 66 peer-reviewed articles in the medical literature addressing barriers to health care among undocumented immigrants. These articles described multiple policy, health system, and individual barriers to care for this population. Policy-level barriers centered on legal barriers, particularly barred access to insurance, and the need to show documentation to get services. Health system barriers included external resource constraints (such as lack of transportation), discrimination within the health care system, and complex bureaucracies. Finally, individual-level barriers identified included fear of deportation, communication ability, lack of financial resources, and experience of shame or stigma.

The barriers to health care for undocumented immigrants are extensive and vary by country. Even in countries with more lenient health care access laws for undocumented immigrants, bureaucratic obstacles can be complex and have similar effects to limiting care. The literature suggests that the legal obstacles are not the only bureaucratic obstacles that undocumented immigrants face; undocumented immigrants deal with challenges that revolve around understanding the health care system, shame, and fear of deportation. Tying access to health care to deportation is perhaps the largest barrier to obtaining services even in countries that offer access. It is well known that immigrants overall and undocumented immigrants in particular are underutilizing the health care system. The ramifications of such obstacles might include a risk to the public’s health when communicable diseases are involved or a risk for more serious issues when health care is deferred.

Given the extent of immigration now and potentially in the future, countries will continue to grapple with developing strategies that serve the public’s health. Many of the recommendations that we identified in the reviewed articles have not been tested so it is difficult to ascertain whether or not they would be deemed successful. Recommendations mentioned frequently involved changing legislation to provide full health coverage regardless of status. Other recommendations suggested providing health care that was limited (by disease), only preventive in nature, or of low-cost. Many countries already have such systems in place.4,7,44

These secondary systems of health care for noncitizens have restricted access to care and require complex and costly bureaucracies to administer. Some of the recommendations we encountered suggested that a thoughtfully constructed (inclusive of preventive, acute, and secondary care) and controlled (limited networks), system might offer a low-cost alternative to full access.

Studies have documented that people migrate to flee violence or persecution or for economic opportunities rather than to obtain health care.21 It is therefore possible that despite concerns that access to health care attracts undocumented immigrants, integration of a noncitizens’ health care option into national systems may not increase immigration. However, more research is needed to better understand the impact of the various recommendations we identified on undocumented immigration, costs, and health outcomes.

Limitations

The literature search was limited to English language articles from the last 10 years and run using PubMed. It is likely that relevant articles are missing from this review that were published in other languages, and indexed in databases besides PubMed (such as PsycINFO and Embase, etc). Inclusion of those missing articles could have added more information on barriers and options for recommendations addressing undocumented immigrants’ access to health care.

In addition, this review was designed to answer a specific question about barriers to health care for undocumented immigrants. Recommendations examined were limited to those identified in the articles retrieved for our review of barriers. We did not carry out a separate review of strategies to address the provision of health care for undocumented immigrants, and a literature review focused on polices or strategies to address health care for this population might provide additional evidence not mentioned in this paper. Another review examining the impact of various health services for undocumented immigrants would be needed.

Because the review aimed to examine barriers in general rather than compare barriers by country, we are unable to present comparisons across countries. Further research would be needed to answer this question. Lastly, we were strictly focused on undocumented immigrants and are unable to comment on barriers to care for documented (legal) immigrants.

Conclusion

There are numerous and wide-ranging barriers to receipt of health care for undocumented immigrants. These barriers are not only legal in nature but also encompass challenges inherent in “undocumented” or illegal status. They include policy limitations, the fear of disclosure, and the lack of both social and financial assets. Given the current level of undocumented immigrants worldwide, these barriers will continue to impact human health. Additional research is needed to determine the effect of implemented health policies on undocumented immigrant health and decisions to immigrate.