Reaching Out, Speaking Up: Epilepsy in the Hispanic Community
BY ALIYAH BARUCHIN, SPECIAL TO EPILEPSYUSA
In the fall of 2007, the Texas-based National Center for Farmworker Health, which runs a toll-free epilepsy information line for Hispanic Americans, received a memorable phone call. The caller, a man with epilepsy who had been in the U.S. for many years, was worried; he said that he was having a lot of trouble holding down a job.
The operator transferred the call to Patricia Dold, then Bilingual Program Manager for the Epilepsy Foundation, and Dold chatted politely with the man in Spanish, then asked how long he had had epilepsy. “Almost 35 years,” he told her. “And when was the last time you went to the doctor?” she queried matter-of-factly. The answer floated over the line: “Twenty-five years ago.”
“I said, ‘My God! In 25 years, the treatment has changed in an enormous way!’” says Dold. “He had a lot of episodes, very bad ones. But he was taking exactly the same medication as 25 years ago, with no follow-up with the doctor. He probably never went to the doctor to tell him, ‘I don’t like this medication, because I have an uncomfortable experience with it.’ He thought that he was doing okay.”
For Dold and others who provide epilepsy care and outreach to Latinos in the U.S., that phone call resonates on all too many levels. The landscape of epilepsy care for Latinos is one of layered, intersecting forces—medical, cultural, social, socio-economic, and linguistic; of multiple barriers to adequate treatment; and of expanding outreach efforts designed to rewrite Hispanic Americans’ expectations about what sort of quality of life they can expect—and achieve—with epilepsy.
"As in any American sub-population, Hispanic Americans with less money and less insurance coverage confront the most formidable barriers to epilepsy care."The largest ethnic minority in the U.S., Latinos are anything but monolithic. They are farm workers from Mexico in California’s Imperial Valley, or white-collar professionals in Phoenix. They are Puerto Rican professors in New York City, Honduran construction workers in South Texas, Cuban small-business owners in Miami, Central American day laborers in New Jersey. They make up some 15 percent of the population, but their numbers are growing so quickly— more than four times faster than the nation as a whole— that by 2050, they will comprise nearly a quarter of the U.S. population.
Those numbers are a major concern in epilepsy care because in the U.S., seizure disorders are almost twice as common among Hispanics as among non-Hispanics. In addition to being fast-growing, the Latino population is increasingly young, disproportionately poor, and too often uninsured; in 2006, 22.1 percent of Latino children were uninsured, the highest rate in the country for an ethnic youth group.
There are a number of reasons for the increased risk of epilepsy among Latinos. The high incidence among elderly Latinos is related to the fact that Latinos have the highest incidence of stroke nationwide. Among younger Latino adults, high-risk occupations such as construction work increase the incidence of epilepsy related to traumatic brain injury. And diseases like cysticercosis, a parasitic infection which causes brain lesions that can bring on epilepsy, occur in many Latin American countries and are sometimes seen in Latino immigrants in the U.S.
As in any American sub-population, Hispanic Americans with less money and less insurance coverage confront the most formidable barriers to epilepsy care. Because both specialty care and antiepileptic medications are expensive, lower-income Latinos are sometimes not treated at all, says Dold. If they are diagnosed and treated, it’s often by their family physician, and they may never have an opportunity to be evaluated at a tertiary care center.
In addition, their access to continued medication may be severely limited, putting them in real danger. “The acute discontinuation of antiepileptic medication can bring on status epilepticus,” says Dr. Blanca Vazquez, Director of the International Program in the Epilepsy Unit at NYU Medical Center in N.Y., referring to the emergency condition in which a seizure or cluster of seizures lasts for 5 minutes or more without stopping. “If patients are not well educated, then they may just think, ‘The doctor gave me this prescription, and when it’s finished, that’s that.’ Or if patients stop because they can’t afford to take the medications, they are at a much higher risk of status. And that’s when we see them in the emergency room.”
Vazquez believes that the way many Latino patients relate to doctors can also present barriers to care. “Doctors in the Hispanic community are sort of glorified, viewed as a very special person,” says Vazquez. “Sometimes it is only the primary-care doctor that initially sees you and makes the diagnosis of epilepsy and gives you X medicine. And it might be that the doctor is not aware of all the advances and all the technology behind epilepsy management—even the new advances in drug development. So patients stay with the older medications, but they are carrying a lot of side effects, and they’re having minor seizures that will prevent them from driving and doing other things, not to mention the cognitive burden of epilepsy that is not completely controlled. When I meet a patient that has had epilepsy for 20 years and still has partial seizures, but they have been on this first drug that they were given because that’s the one that the doctor feels comfortable with, that’s loyalty preventing the patient getting a higher level of care.”
Dold, who is Colombian, agrees. “Sometimes we don’t stand up for ourselves, and say, ‘Hey, I would like to have another opinion,’ or, ‘Hey, I don’t understand it; could you explain it to me?’ We are agreeable: estamos de acuerdo.We don’t like to create conflict.”
"Epilepsy is an illness that is treatable, and symptoms can be minimized so that a person is able to be healthy and productive. Please ask the questions; don't be embarrassed -- ask for help. There are many, many people that share those same issues with your, and collectively, there's something that we can do to help."Sylvia Partida, director of operations at the National Center for Farmworker Health (NCFH), which runs the epilepsy call center, says, “A patient sometimes is very quiet throughout their office visit, so it’s hard to understand what is it that’s keeping them from expressing fears or questions. And many times, we find the physicians are very willing—they would like to help. So we try and help patients to improve that relationship, and feel comfortable about asking those questions.”
Very often, of course, the problems that Latino epilepsy patients encounter in the doctor’s office simply have to do with language. “There have been various studies done in immigrant and refugee communities about barriers to health care, and in every single one of them, language is the number-one barrier that people name,” says Cynthia E. Roat, a national consultant on language access in health care. “More than financial, more than transportation, more than child care, more than issues of prejudice for people with Medicaid.”
Barbara Rayes, master trainer for the National Medical Interpreter Project at Phoenix Children’s Hospital, agrees that even access to care pales beside language issues. “It doesn’t do any good to get somebody in the door for an appointment with a neurologist if the person doesn’t understand what the neurologist is saying, and the neurologist doesn’t know what the person is saying.”
Qualified interpreters play an especially crucial role in epilepsy care for a number of reasons. “Because epilepsy is a chronic condition, communication is absolutely at the heart of epilepsy care,” says Roat. “With good communication between the provider, the patient, and the family, epilepsy can be managed and people can live completely normal lives. Without the clear communication, people have terrible problems.”
Particularly at issue is a doctor’s ability to take a complete history. “Epilepsy is still a clinical diagnosis, and a clinical diagnosis is ultimately based on a history,” says Dr. Joseph Sirven, co-director of the Epilepsy Monitoring Unit at the Mayo Clinic College of Medicine in Phoenix. “The history is how you come up with a care plan; if you can’t do that, you’re guessing. And sometimes getting a history from someone who speaks very fluent English is not the easiest thing to do. So if you throw in a language barrier, that makes this a very difficult situation.”
Rayes created a training module, now in use nationwide, to teach medical interpreters how to competently translate for Latinos with epilepsy. Specific training about epilepsy is necessary, she says, because interpreters themselves often harbor misconceptions about the condition (e.g., that putting a spoon in someone’s mouth is appropriate seizure first aid). “We don’t want interpreters in shell shock. They’re standing there at the bedside, they’re interpreting, and what they’re interpreting they’re hearing for the first time, and it’s contrary to what they grew up believing,” she says. “That’s not a good situation. So we want them to have accurate information in the first place.”
Spanish-speaking medical interpreters often work side by side with community health workers, or promotores, trusted lay individuals who help manage care for Latino patients and are central to the provision of health care for Latinos in the U.S. The two groups—interpreters and promotores— have very different functions and training. Says Roat, “Many people think that if you can speak the language, you can interpret. So community health workers are often just expected to interpret without ever having been trained as an interpreter, which is kind of like expecting your front desk receptionist, who’s been trained in that post and does it very well, to suddenly become a nurse and put in a Hickman line.”
Yet she acknowledges that the boundaries do sometimes blur, especially for interpreters. “If there are cultural issues that are getting in the way of the patient and provider being able to understand each other, the interpreter may become a culture broker, to try and call attention to this so that the doctor can ask more specific questions,” she says. “And in cases in which the patient’s health or well-being are in danger, interpreters in health care settings also sometimes become advocates.”
That kind of culture brokering becomes crucial because of persistent, extraordinarily negative beliefs among many Latinos about epilepsy. In a 2005 survey of perceptions, conducted in Spanish, that sampled more than 700 Latinos in seven cities across the U.S., Dr. Sirven and colleagues found that a large proportion of those surveyed fear epilepsy; believe that it is the result of sins, demonic possession, or substance abuse; and would probably hide a family member who has it. Dold and Vazquez say that such beliefs are more common among immigrants from very rural areas of their countries of origin, where there is less education and religion holds more sway, and that those types of communities cut across all national lines.
Obviously, those beliefs can compromise care in any number of ways. Bobbi Ryder, president of NCFH, feels that this type of superstition speaks to a certain fatalism in Hispanic cultures. “You know the phrase Si Diós quiere—‘If God wills it’?” she asks. “They give up control for things like that, like it’s been wished upon them, as opposed to something that they have the ability to fully understand and get control of.” Roat saw this for herself when she translated for a family whose child had just been diagnosed. “The family truly believed that the child had epilepsy because the mother must have done something wrong during the pregnancy,” she remembers. “She had this point of view that this was a horrible thing that had happened to her child, and that they were just going to have to live with it, and horrible things were just going to continue to happen because it was her punishment. And she didn’t seem to be paying a lot of attention to what could be done to mitigate the circumstances.”
In that situation, Roat herself intervened. “The provider kind of reassured her, and then just dismissed it. So I stepped out of my role as a strict interpreter and explained to the doctor that in Hispanic communities, this sense of guilt was very, very deeply rooted and that it appeared to me that it might be useful to address this again. The doctor actually did end up having a very good conversation with this patient, going over a lot of detail about what is known about what causes epilepsy, and it did make a huge difference.”
Outreach and training for promotores, too, are key to overcoming community superstitions and ensuring that Latinos get appropriate care. Mary MacLeish, retired executive director of the Epilepsy Foundation of Arizona, says the affiliate has partnered with the Arizona Community Health Outreach Workers Network (AzCHOW) to train promotores around the state. “They’ve been very important to us, especially in areas along the border. We’ve worked to educate them, and in turn, when we’ve done conferences in some of those areas, they have brought in the people, the community,” she says. “Coming to a conference or a support group is not really part of the culture. So for us to train the promotores, and for them to then go back out and say to people, ‘Here, I’ll go to that conference with you,’ has been a big help.”
"When I meet a patient that has had epilepsy for 20 years and still has partial seizures, but they have been on this first drug that they were given because that's the one that the doctor feels comfortable with, that's loyalty preventing the patient getting a higher level of care."Outreach and education efforts also have to consider the importance of family in Hispanic cultures. “The Hispanic community is very, very tight, and family iscentral to everything,” says Debbie Carr, the Epilepsy Foundation’s vice president for quality of life, programs and research. “We’re using many of the tools that we’ve developed to go out and educate Hispanic families as well as their caregivers.”
Healy Vigderson, assistant director of the Epilepsy Foundation of San Diego County, says of her outreach work, “It’s critical to find ways to involve the whole family. We recently had a group outing to see Disney on Ice, and we made it very clear that we wanted the kids, the parents, the grandparents, the friends, the extended family—we wanted everybody to come,” she says. “Often they don’t know how to support the person with epilepsy. You know what? Sometimes all you need to do is go to the ice skating rink with them, and sit with them, and show them that you support them and you’re not ashamed of them.”
The other overarching issue for Latinos with epilepsy is, of course, immigration status. Vigderson works in outreach and education across the fluid border between San Diego and Tijuana, Mexico—the most heavily traveled border in the world—where the primary barrier to care is economic. “In our area there is only one clinic that does not require the need to present papers in order to receive care,” she says. “Those that do go to this one clinic can see a primary care physician, but if they have epilepsy, they cannot have any access to a neurologist unless they want to pay cash. And there are people that will come up with the cash and go to see the neurologist, but then it’s a matter of, can they afford to pay for the tests and can they afford to pay for the medication as well?”
For undocumented populations, Vigderson acknowledges, simple fear also influences decisions about care. “If the children have documentation but the parents don’t, and the child may be the one with epilepsy, there’s a great fear on the part of the parents that they don’t want to be too public, because they could be deported,” she says.
Dold sees this fear as a pervasive barrier to outreach and education efforts as well. “For Hispanics, the most important thing is to build trust, because we think that you will find immigration officials everywhere,” she says. “When I was doing my training sessions, sometimes people didn’t show up unless I organized my sessions with their community leaders, so that they knew Immigration was not.”
Because epilepsy requires continuous care and monitoring, typically over a period of decades, the other Latino population at enormous risk for inadequate care is migrant workers. “If you’ve got a family that’s migrating from place to place, it makes it a lot harder to achieve continuity of care,” says NCFH’s Ryder. “So if you can link a patient in place A to place B and place C, and to a warm hand-off—not only to the local Epilepsy Foundation, but also to the closest migrant health center, where they can receive ongoing care—then that’s an added advantage that we have.”
It is a daunting array of issues for any one ethnic group to face—language, cultural beliefs, socioeconomic status, immigration status. Yet Vazquez believes that there has never been more momentum in epilepsy care than right now, and she wants Latinos to partake of that fully and proactively. “I always try to emphasize the responsibilities of the patient and the patient’s family: patients can be of great help to the doctors,” she says. “Be an advocate; read about epilepsy; write down questions for your doctor.”
The range of Spanish-language services offered by the Epilepsy Foundation and its affiliates continues to expand, through partnerships with both the CDC and the Health Resources and Services Administration (HRSA). Programs include NCFH’s national call center; public service radio campaigns in major Hispanic markets; a Spanish-language Web site and print materials; the first annual Hispanic Conference on epilepsy, held early this year; epilepsy training for medical interpreters, promotores and school nurses; training and awareness outreach for primary-care physicians in rural areas; and, most importantly, ongoing education and support for underserved Latino patient populations and their families nationwide.
And at the NCFH call center, Sylvia Partida wants Latinos dealing with epilepsy to know, above all, that there’s no need to hide, and that they are never alone. “Epilepsy is an illness that is treatable, and symptoms can be minimized so that a person is able to be healthy and productive,” she says. “Please ask the questions; don’t be embarrassed — ask for help. There are many, many people that share those same issues with you, and collectively, there’s something that we can do to help.”
For more information, visit our Spanish language site: www.fundacionparalaepilepsia.org or call the Spanish language toll-free line at: 866-748-8008.
The Epilepsy Foundation has materials available in Spanish regarding epilepsy including attitudes about epilepsy in Spanish-speaking adults, treatments, medications, first aid and legal issues. To request publications, call Gerald Sejas at 301- 918-3731. In addition, contact your local Epilepsy Foundation for more information on Hispaniccommunity outreach and programs.