Doctors Face a Language Barrier
It’s an extraordinary Friday morning in August. Inside the University of Rochester’s School of Medicine and Dentistry, a transformation is happening. Dozens of volunteers wearing aqua surgical scrub shirts are setting up a role-playing exercise that includes a mock waiting room, emergency room, psychiatrist’s office, pharmacy, and station for consulting with social workers. The school’s cavernous atrium becomes Deaf Strong Hospital, where the staff are deaf and the patients are hearing.
Deaf Strong Hospital was established by the school’s medical students in 1998. The yearly event is now spearheaded by the CDC-funded National Center for Deaf Health Research (NCDHR), one of 35 Prevention Research Centers (PRCs) across the country. Each center works with underserved communities to identify and address their most pressing public health needs; the Rochester PRC works with the area’s deaf community. Deaf Strong Hospital gives medical students and the local deaf community an opportunity to contribute to the training of future doctors.
“Exercises like Deaf Strong Hospital teach medical students that language differences limit the ability of clinicians to do their job well,” says Steven Barnett, MD, a researcher with NCDHR and a family physician who is hearing. In this case, the volunteer staff use American Sign Language (ASL), but the lesson applies to any language other than English.
Before the training begins, Matthew Starr, MPH, speaks to the volunteers in ASL. Mr. Starr, who is deaf, is NCDHR’s communications team leader and helped organize the event.
“The point of this exercise is to have the person encounter a communication barrier, because this is what we experience,” says Mr. Starr.
The volunteers are to act much like the staff at any hospital. They will have conversations with each other, try to engage the medical student “patients” in conversations, and help them get the medical attention they need. Mr. Starr adds that writing notes back and forth during the exercise is permitted, but because the mock medical staff members are so busy, the notes should remain brief.
Deaf volunteer Jeff Shaul, a second-year biochemistry major at Rochester Institute of Technology, takes his post in the social worker department, where he will help verify patients’ health insurance.
“I think this is great because we can have better relationships with the people in health care,” Mr. Shaul says. “My real purpose here is education. We are teaching what it feels like to be on the other side of the coin.”
Meanwhile, 104 new medical students fill a nearby lecture hall. Matt Brockway, who is hearing, is one of them. He says he received a green folder 24 hours ago, with handouts explaining the exercise and how to fingerspell the English alphabet. He will need the alphabet handout so he will know when a staff member in the waiting room calls his name.
The class moves into the atrium and Deaf Strong Hospital. Students take a seat in the waiting room. To call each patient in turn for his or her appointment, the office staff member stands up, waves for attention, and fingerspells a name. When a student-patient recognizes the name, he or she approaches the hospital employee at the table to find out where to go next. The students walk away from the waiting room with wide smiles as they clear the first hurdle in getting medical attention.
The student-patients are assigned to one of four color-coded treatment scenarios that tell the Deaf Strong Hospital employees which instruction card to hand out. One patient is sent straight to the mock emergency room because a case of meningitis could be developing.
A long, silent line forms at the emergency room. Patients wait to be initially assessed, and then write notes, gesture, or fingerspell their symptoms to the ER staff. In debriefing sessions after the exercise, students recall how worried they were at this point—that the ER staff would not understand them or that they were agreeing to instructions they did not understand.
Throughout the afternoon, the students and the volunteers try to communicate and work through interactions that, at times, become frustrating. Mr. Starr says as part of the learning experience, an interpreter works at one of the stations the students visit. “This helps the students realize the benefit of having an interpreter,” he says.
At the ersatz pharmacy, a staff member uses his wristwatch to demonstrate how to take the medicine three times a day. By gesturing the passage of time, he expertly overcomes the language barrier. His combination of medical information and a bit of pantomime helps patients understand they should not drive while taking the candy medication and that they should take it at mealtime.
When the exercise is over, Mr. Brockway—one of the medical students—speculates the experience will be helpful in the future when he is a doctor.
“Even if this experience doesn’t remain in the forefront of my mind, the first time I am treating a deaf patient, or even one who speaks a language other than English, I will be like, ‘Holy Cow! I remember what these patients have to go through.’”
Deaf Community Contributes to Cutting-Edge Research
After participating in Deaf Strong Hospital, Mr. Brockway and several of his fellow medical school students noted the exercise will be particularly helpful to the members of the class who go on to practice medicine in Rochester, long known as one of New York’s “deaf-friendly” cities. For generations, the local printing industry and print-technology manufacturers employed members of the deaf community, and for decades, the city has been a place where hearing and deaf communities interact. Rochester Institute of Technology, for example, comprises eight colleges; one of them is the National Technical Institute for the Deaf. It offers classrooms, curricula, and a college life that revolves around the different ways deaf students learn and communicate. Inside the college’s arts center, the galleries present traveling and permanent exhibits by deaf and hearing artists alike. At the NCDHR, part of the University of Rochester, deaf and hearing investigators work together to promote the health of deaf people and eliminate health problems.
Members of the deaf community say they do not consider their deafness a disability and that they are proud of their thriving culture, with its shared language, arts, values, history, and a community experience and identity distinctly its own.
“Deafness is just part of our human diversity on the planet,” says Scott Smith, MD, MPH, a Rochester pediatrician and preventive cardiology fellow, who is deaf.
But even in a well-connected deaf community like Rochester’s, the public health needs of deaf people have not been adequately studied. The prevention researchers and their community partners are working to provide information that can improve health and wellness among deaf residents.
Public health researchers use the CDC's Behavioral Risk Factor Surveillance System (BRFSS) to collect health behavior information from the general population, but this survey requires participants to answer questions they hear over the telephone. Both the technology and the BRFSS questions needed to be adapted to survey deaf participants.
The deaf population uses many forms of communication, such as ASL and a related form of signing that uses ASL vocabulary with an English-language sentence structure (English-based signing, or EBS). Like many people for whom English is not their first language, many deaf people have difficulty reading English, so written surveys would not be useful. The researchers developed a video-based survey system that presents survey items and gives instructions in ASL and EBS, while including captions in written English text. Respondents choose from six video interviewers: four of them present the survey in ASL and two others in EBS.
“They take the survey in their best language,” says Dr. Barnett, who is the lead researcher in the study. “That is how one gets the best possible data.”
Dr. Barnett says that some medical terms, like “cholesterol,” do not have a corresponding sign in ASL and often are fingerspelled. Such terms are described in ASL and EBS in a dictionary that is available in the survey.
The researchers used a “back-translation,” or “bi-directional translation,” process to be sure the original English-based BRFSS questions from the 2006 survey questionnaire were accurately translated into ASL for the video. Deaf and hearing team members, fluent in both English and ASL, translated the original questions and responses into ASL and videotaped them. Then, independent bilingual reviewers watched the video content and translated it back into written English, so other reviewers could compare it with the original English-text questions and responses. Any differences between the two written versions were noted so appropriate corrections could be made. The team followed a similar process for the EBS survey.
The researchers loaded the survey program and all the video clips into computer kiosks that have a touch-screen format. To ensure only one participant answers at a time and that the responses remain private, a user stands behind a curtain, watches the video or reads the text, then responds by touching the screen.
When the kiosks were ready, the researchers made the survey available to members of Rochester’s deaf community. More than 300 respondents were surveyed in Rochester, at locations including a recreation club for deaf residents and the PRC office as well as during community events, such as the 40th reunion of graduates of the National Technical Institute for the Deaf. If some participants wanted to take the survey but could not get transportation to a survey site, the researchers took the kiosks to the participants’ homes.
The basic survey asks 98 questions, but the computer presents different questions based on the participant’s responses, performing age- and gender-appropriate questioning. The team added unique survey items to collect deaf-related characteristics, such as age-at-onset of deafness. It was administered from March to September 2008. Results showed that most of the deaf respondents in Rochester are white and may have disproportionately low household incomes considering their high level of education. Most have been deaf since birth, and a third of the respondents had a deaf parent or sibling. Analyses are ongoing, and the results will be compared with results from a 2006 BRFSS general-population survey taken by telephone in the county where Rochester is located. The PRC researchers say they will continue to refine their survey technology and techniques so one day, deaf people can routinely participate in surveys. This advance could help researchers survey deaf communities in other regions of the country and thereby compare and address their public health needs.
Community-Research Partners Shape the Future of Deaf Health
At a series of town hall meetings, researchers and community members agreed that obesity, suicide, and relationship violence were the high-priority health topics that emerged from preliminary analysis of the survey results. The researchers and their community partners will develop interventions to address these issues, starting with obesity, during the PRC’s 2010 to 2015 grant cycle.
Rochester PRC director Thomas Pearson, MD, MPH, PhD, who is hearing, says future interventions may include training deaf people to be community health workers. Community education is an area of particular interest to the NCDHR, adds Dr. Smith, because deaf people often find it difficult to get accurate and useful health and medical information.
“We have to learn from the deaf community what we can’t hear on the radio or television,” says Dr. Smith, the pediatrician. “We have to get that from one another or it becomes a gap that grows and grows.”
The PRC has been a big help in providing health education, says Steven DeBottis, president of the Rochester Recreation Club for the Deaf—a resource that has been the hub of Rochester’s deaf community since 1945. Not only was it one of the sites where the deaf health survey was administered, but it is a place where members can find information they need for their everyday lives, he says. Members packed the recreation center on the nights deaf NCDHR physicians came and used ASL to answer questions and lecture on staying healthy.
Clubs and other organizations really can help deaf communities stay informed about health, adds Dr. Smith. He says he recently traveled to another state to meet with members of other deaf communities. A group of deaf senior citizens in the state capital, he observed, were key sources of information and kept their community informed, much like the recreation club does in Rochester. Members of the city’s deaf community were especially savvy about keeping their hearts healthy.
“I was so impressed at their level of knowledge,” says Dr. Smith. But he notes that in large cities, it may be easy for deaf residents to help keep each other informed. When Dr. Smith traveled to a small, rural town, deaf people there tended to be isolated and could not get together regularly to share stories and information. The difference was dramatic, Dr. Smith says, adding that he hopes that the work at NCDHR will help identify the most important health information to communicate and which deaf communities need it the most.
The students at the University of Rochester’s School of Medicine and Dentistry are striving to keep the deaf community informed about health. They work with deaf community members to create educational videos for a Web site (www.healthysigns.org).
“We have to bring deaf people together,” says Dr. Smith. “We need to find each other.”