By Allen Siegler
Greensboro, N.C. – Sun H vividly recalls when her mother announced she was pregnant with her youngest brother, Daniel. It was over a decade ago, at her 15th birthday party.
At the time, her mother had been carrying Daniel for five months. A few of H’s (that is her full last name) friends had thought her mom was pregnant before the meal, but she wasn’t convinced.
“We pray before we eat, and so my mom said, ‘And God, please look after this baby that’s in my belly right now,’” H said. “I was like ‘Oh my God.’ She literally wasn’t going to tell anybody that she was pregnant and this was going to go on.”
Other memories of that time are more difficult to think about. Her family is Bunong, one of the many tribes indigenous to the Highlands of Indochina that make up the Montagnard ethnicity. H and her parents escaped as refugees nine years earlier, in 2002, and resettled in Greensboro, North Carolina. The family was still learning how to navigate complex systems in clinics and hospitals.
H’s mother had not had access to formal English classes and could only speak Bunong. H spoke Bunong at home and learned English through her public school classes; she was the de facto interpreter for her parents. Over the next few months, obstetricians and nurses turned to H to translate as they asked her mother deeply personal questions.
“They were about her period, her sexual history, how many kids she had, how many passed away when they were young,” H said. “These things I’ve never spoken to my mom about. I didn’t know I had other siblings [who died], so that was really hard for me. And then we had to move on to the next question.”
H also had to facilitate conversations about pregnancy risks for women in their late 30s, and whether her mom wanted a tubal ligation surgery after the birth.
“I didn’t know if my mom was being honest or if I was asking these questions correctly,” she said. “Those kinds of things I often wonder about.”
Language deficit impedes health
Communication challenges in the U.S. health care system are common among refugees, particularly among refugees who speak languages used infrequently in this country. While children are often able to learn English quickly, adults tend to take longer to pick up the language, due to employment responsibilities, familial needs that keep them from language instruction, and age-related cognitive differences.
That lag, plus cultural differences in communication, can lead refugees to underutilize the health clinics and hospitals that are available to them.
“Imagine that you are unable to speak the language at all or you have very limited speaking skills and someone hands you a brochure in English that explains what diabetes is,” said Iris Feinberg, a health literacy professor who works with refugees through Georgia State University’s Prevention Research Center. “You’re going to look at that piece of paper and throw it right in the trash.”
Feinberg co-authored a paper published last year that examined language barriers among refugees. She and the other researchers found evidence that opportunities to improve health literacy skills, or the knowledge needed to understand and use a U.S. medical setting, are not accessible to most refugees.
The study also showed that when refugees have both limited health literacy and English proficiency, they were more likely than other refugees to report their health as poor. The inequity persisted years after the initial resettlement period in the U.S.
“In terms of not just health access but also health outcomes, language is critical,” Feinberg said. “Making sure that patients and health consumers understand what’s expected of them, understand what’s being said to them, is really critical.”
The role of civil rights
The U.S. legal system has provisions designed to address language discrimination. Title VI of the Civil Rights Act of 1964 prohibits discrimination against anyone based on country of origin. It requires any agency that accepts federal funds (the vast majority of U.S. hospitals treat patients covered by Medicare and Medicaid, both federally-funded) to provide adequate interpretation services for anyone it serves; in theory, it mandates that refugees can receive treatment in their native language.
In reality, the law is hard to enforce. In most circumstances, The U.S. Department of Health and Human Services’ Office for Civil Rights expects clinics and hospitals to budget for language resources without its assistance. As such, Feinberg has found that they often do not provide adequate translation services consistently.
“Title VI was never funded,” she said. “There are no teeth behind it except that they say you have to.”
Jane Lee served as a medical scribe at UNC Medical Center. During her time there, Lee, whose name has been changed to protect her from future employment repercussions, saw how difficult it was for the hospital to maintain their Title VI obligations.
“I would see 7-year-olds translating what was going on with their parents,” said Lee. “That can’t be a reliable solution in the long run.”
Barriers at every step
At UNC, Lee noticed refugee treatment barriers that started before anyone arrived at the hospital. Her understanding was that in most circumstances, there are few services available in languages other than Spanish for patients calling to schedule appointments or checking in for their slots.
In the clinical setting, there are some Spanish-speaking interpreters available. For other, less-spoken languages, doctors often use tablets to provide digital face-to-face interpretation services. The tablet can connect patients and providers to people who speak hundreds of different languages. But there are situations when this technology is not effective.
“In an emergency department, it can be really hard to hear,” Lee said. “The iPad can be really difficult to use because even though [the interpreters] speak the language, they can’t understand what [the patients are] saying because they can’t hear them.”
Online interpreters also struggle to communicate cultural differences between health care services and patients.
“Medicine is so complicated because it’s very messy and personal and fast and emotional,” Lee said. “We have to make really quick decisions, and inevitably, we’re making those decisions on a bias.”
Despite these challenges to providing adequate interpretation, most hospitals receiving federal funds provide better language services than other medical settings who are not subject to Title VI. The Montagnard Dega Association (MDA), a small Greensboro-based non-profit created to support Montagnard Americans, has been unable to convince private practices to provide its own interpreters. Non-English speakers often go without services such as eye or dental care because a practice does not dedicate funds for language services.
Liana Adrong, MDA’s executive director and a Montagnard refugee, observed that even when refugees’ health needs are not met, past experiences with inhumane authority figures can discourage people from speaking out.
“If there’s a certain thing that comes up, they’re just going to be quiet. They’ll say ‘Oh, we don’t want to get such and such in trouble,’” Adrong said.
All these barriers point to the same conclusion: Clinical services are not designed to accommodate refugees as individuals with complicated histories and health problems.
“Everyone’s situation is different,” Adrong said. “I think it’s important we understand people’s situation and not blame them.”
Nonprofits take action
In the heart of Carrboro, North Carolina, an organization called Refugee Community Partnership, or RCP, operates in a few rooms in a shared office space. Asif Khan, a Bengali immigrant, created the non-profit in 2012 while he was an undergraduate student at UNC Chapel Hill. After a chance encounter with a Bengali refugee family, Khan, who recently graduated medical school at UNC Chapel Hill, set out to create an organization that would empower refugees to take control over their own health. RCP now has nine staff members focused on language justice, or the work of advocating for improved language resources within organizations.
RCP has been interested in tackling three language-related barriers it sees in medical settings around Carrboro, Chapel Hill and Durham: That hospitals have sole control over interpretation resources; that young refugee and the children of refugees who speak both English and their parents’ native language serve as informal interpreters without proper training or compensation; and that hospital interpretation service feedback is often asked for in English without translation and thereby take control away from the patient.
To combat these communication gaps, RCP staff created the Navigator Program. It’s a public health intervention that pairs non-English speaking patients with one of their trained language navigators.
“[Navigators] help the patient navigate the health care system by providing them with support, with advocacy,” said Daniella Runyambo, a co-designer of RCP’s language justice program and a refugee from the Democratic Republic of Congo. “They also provide language assistance, which a lot of the times involves setting up the appointment and checking in.”
RCP trains and hires teenagers and young adults within refugee communities to become language navigators. The organization finds people who, like H, have grown up speaking their parents’ native language at home and English in school. They are able to use skills developed through years of interpreting doctors’ questions for older family members.
During an appointment, a navigator takes notes on the hospital interpreter’s interaction with the patient. The navigator writes down whether the interpreter speaks the correct language and how respectful the interpreter is to the patient. Those notes are then kept in an RCP database and used to inform hospitals on the best ways to serve refugees.
With these three features, RCP’s Navigator Program allows refugees to take more control of their health.
“We are seeing many lives changed,” Runyambo said. “We are seeing our community members learn their language access rights, and with that knowledge, they can advocate for themselves.”
In Greensboro, the MDA applies similar techniques to help their non-English speaking community members access health care.
“We’re trying to identify young people from the community who are bilingual and put those people through training,” Adrong said. “Hopefully then they can work at different agencies as interpreters; that way, we can increase interpreters in our community”
MDA has also established a referral line to Cone Health, a major hospital system in the Triad region. Through the line, MDA staff can call Cone Health receptionists and set up appointments for non-English speaking refugees.
Including refugee voices
Although these non-profit efforts are beneficial for their communities, they have limits. According to Adrong, MDA would need to establish a more secure funding source if it expects to train young adults to be interpreters in the future. Both MDA and RCP have operating budgets of under $200,000 a year; for context, their combined assets total to less than one percent of the funds available to The Salvation Army’s North Carolina branch.
“We can educate some people right now with this grant we have,” Runyambo said. “But other people will need to be able to continue it.”
In addition, RCP only has the capacity to provide navigators in the health care system. It cannot address gaps in necessary language resources in other health-determining facets of life such as housing, education and employment. MDA tries to provide interpreters for some of these situations, but it ends up doing much of that work without compensation.
Runyambo finds it frustrating that her organization’s resources are dedicated to fixing a problem that should be addressed under Title VI.
“It is not our responsibility to begin with,” Runyambo said. “Questions like are we providing the right care for our patients, are we communicating correctly with our patients, when do we provide interpretation, are we allocating the right resources to institutions so they can provide the best care to patients. Those are questions that are so simple and so basic to providing decent care.”
Mary Helen O’Connor, another Georgia State University professor who studies refugee resettlement, believes there are concrete steps the U.S. government can take to fix this problem. One step is Congress fully funding the Office of Refugee Resettlement, a branch of the Department of Health and Human Services that’s the federal agency responsible for refugees’ well-being, with a special appropriation of money for mental health services and language support.
The ORR did not respond to questions for this story.
Feinberg agrees and thinks building more Federally Qualified Health Centers (FQHCs), or public community-based health clinics, in refugee communities is another important change. FQHCs often provide specialty care, such as dental services. Unlike private specialty practices, they are mandated by Title VI to have language services.
Whatever changes the government decides to make, O’Connor has identified a good place to start–including refugee voices in policy decisions that affect their health.
“These are the most resilient people on the planet,” O’Connor said. “They have survived the unimaginable. It’s time that we go to them as experts in their own experiences and learn how to fix the problem.”