For one UW–Madison School of Nursing alum and professor, creating tools to address culturally-appropriate care and improve clinical practice means patients’ symptoms are no longer lost in translation.
By Sheri Hall
During her formative years, Maichou Lor ’11, MS’12, Cert’14, PhD’17, RN, had a front row seat to the challenges that the U.S. health care system presents to minority patients.
Lor was six years old when her family, who are culturally Hmong and originally from Laos, immigrated to Wisconsin after living in refugee camps in Thailand. As the first in her family to learn English, Lor acted as a translator for family members – especially in health care settings – and quickly realized the care received by the Hmong community was severely lacking.
Those early experiences inspired Lor’s career. Today, she is an assistant professor of nursing at UW–Madison and one of the nation’s leading researchers in minority health disparities.
More importantly to Lor, she has developed a broad range of tools to improve health care for the Hmong community. They include a culturally-appropriate pain scale, a Hmong hearing test, and an English-Hmong lexicon – an online dictionary of sorts – to help Hmong translators working in medical settings. In addition, Lor is working to translate those tools for other minority groups.
“When the system fails to address structural barriers to care, what can we as researchers do to provide access to these marginalized populations?” she said. “My work is focused on creating tools that are useful in clinical practice, and that can give better access to all people, no matter what their background.”
Cultural translation
Thanks to her personal experiences, Lor understood the importance of cultural translation in health care from the outset of her nursing career.
“Language is not the only barrier; our health care system also struggles to deliver culturally-appropriate care,” she said.
Evaluating pain is a prime example. The U.S. health care system uses a numeric scale when asking patients to rate pain where zero is “no pain” and 10 is “the worst pain” the patient can imagine.
“When the system fails to address structural barriers to care, what can we as researchers do to provide access to these marginalized populations?” —Maichou Lor
But Hmong culture doesn’t focus on numeric measurements. The Hmong language is an oral tradition, passing information for centuries via stories and songs. Many Hmong individuals do not use the written language, which wasn’t developed until Christian missionaries encountered the Hmong in the 1950s.
“There’s a whole other world of how people quantify and describe pain that doesn’t get represented in a linear number, but makes use of other parts of language,” Lor explained. The Hmong tend to use metaphorical phrases and vocal features, such as elongated vowels or a higher pitch, to describe pain – cues that an American health care provider may not grasp, Lor explained.
To bridge that gap, Lor created a Hmong Pain Assessment Visualization Tool, which translates Hmong pain metaphors into icons that use facial expressions and changes in skin tone to communicate pain, offers English translations for interpreters, and incorporates pain terms familiar to clinicians. It’s now being tested at a large scale to see how well it works for Hmong patients in Wisconsin and Minnesota. (Wisconsin is home to the third-largest Hmong population in the U.S., following Minnesota and California. Within the state, Hmong represent the largest Asian American ethnic group.)
Lor is also working to adapt the Hmong pain scale for the Latinx community, which also regularly uses metaphors to describe pain.
A new type of translation
A main focus of Lor’s work is supporting Hmong interpreters in health care settings. Last year, she launched the Lexicon of English-HMoob Medical Terminology, an online resource to help Hmong interpreters grasp the intricacies of English medical terminology while honoring Hmong cultural sensitivities and traditions.
“My work is focused on improving patient, interpreter, and clinician communications,” she said. “This is really in response to the community needs.”
Hmong beliefs about illness are very different than Americans beliefs. The Hmong recognize a spiritual element to health and well-being beyond what is described in Western medicine. Because of the oral tradition of their language, they often use parables and metaphors to describe how they are feeling.
“The Hmong tend to tell stories about their health and sickness through their own cultural frames, which may seem ambiguous or irrelevant to an American doctor” explained Nathan Badenoch, Director of the Asian Studies Program at Villanova University who worked with Lor to create the lexicon. “What the Hmong people are telling the doctors and interpreters isn’t irrelevant, but it doesn’t mesh with the questions being asked. Doctors want efficient, precise information and the Hmong want to tell their stories.”
This often leaves the interpreter caught in the middle, trying to explain cultural intricacies to a health care provider working in a system that values specific, precise language.
“There’s a whole other world of how people quantify and describe pain that doesn’t get represented in a linear number, but makes use of other parts of language.” —Maichou Lor
The lexicon seeks to solve this problem by providing context and explanations for Hmong concepts, not just one-to-one word translations.
To capture such depth in the document, Lor convened an advisory group of Hmong medical interpreters and asked them to talk about their experiences. She also asked Hmong elders and bilingual Hmong caregivers to provide their input on the translations in the lexicon.
“Most organizations who make a technical terminology lexicon like this will say, ‘We did our best, but there are problems,’” Badenoch said. “She invested the time and energy to make this project incredibly successful by connecting academics, professionals, and the community in a sustained effort to thoroughly explore the details that are so important.”
The lexicon has been widely distributed across the country, especially in states with significant Hmong populations. So far, it has been downloaded more than 5,000 times. And Lor has received a grant to print more than 400 copies of the book, which will be made publicly available at libraries throughout the state of Wisconsin.
Leveraging Technology to Adopt Tools
Lor’s next project is to refine the Hmong hearing test that she created in 2022. Again, her inspiration was personal.
Several years ago, Lor’s father began experiencing increased hearing difficulties. Audiologists assess hearing with two tests: a pure tone test, which involves listening to single sounds, often beeps, at different pitches and volumes, and a word recognition test, which measures one’s ability to correctly understand and repeat a list of words presented at volumes louder than the minimal level at which one can hear. Currently, only English speakers have access to word recognition test, leaving non-English speakers without tests in their native language.
So, working with a team of UW–Madison researchers and students, Lor created and validated the first-ever Hmong version of the word recognition test. But then she encountered another problem: the test requires a native speaker to grade it, so few audiology clinics are able to use it.
Now Lor is working on an automated system that will use artificial intelligence to score the Hmong word recognition test. “This system will allow any audiologist to score this test,” she explained. “This tool is not meant to replace an interpreter or audiologist. It’s truly meant to be a support tool.”
If the technology works, it opens the door to creating word recognition tests in dozens of other languages, potentially expanding the quality and equity of audiology care for millions of people.
“Hearing tests are a prime example of when people who do not speak English, they do not receive the standard of care,” Lor said.
For Lor, these projects are all about making sure that everyone in the U.S. health care system the best care possible. “I see this with minority patients in general, and it’s my goal for them to receive the most appropriate, highest, equitable level of care,” she said.