As we age, our healthcare needs often change. For example, we might experience hearing loss or chronic pain. We might want to engage in advance care planning.
Now imagine that simply communicating with healthcare providers is a struggle. What would you do to meet your health needs?
University of Wisconsin–Madison School of Nursing Assistant Professor Maichou Lor, PhD, RN seeks to improve healthcare for people with limited English proficiency, with a focus on Hmong elders. She points out that without good communication, we can’t reduce health disparities.
“The common thread in my work is health communication,” says Lor. “My research is driven by the community, focusing on the issues they bring to the forefront. The biggest barriers to healthcare access are around communication. So, one of my goals is to identify aspects of communication that we can enhance to improve the Hmong community’s access to healthcare.”
Lor’s community-engaged research has addressed pain assessment, hearing loss, medical interpretation, and end-of-life care, among other topics.
“I am conducting research related to pain because, for many individuals, pain is a primary motivation for seeking medical care,” she says. “And without access to the right diagnostic tools, people can’t get appropriate treatment for hearing loss. So, it’s all about access.”
For her hearing-related research, Lor works with audiologists, a linguist, and an ENT physician.
“Collaborating across professions brings innovative solutions,” says Lor. “Thinking innovatively, asking what do we know from the clinical side? What do we know from the research side about what people are struggling with? How can we use our expertise together to address a health equity issue?”
Lor’s goals include developing, testing, and disseminating tools for clinical practice.
“We developed the first Hmong word lists to diagnose and provide better hearing care, which I think is amazing,” she says. “My father also has hearing loss, so that became an even greater motivator.”
Word recognition tests are a basic component of hearing evaluations. Hmong people began immigrating to the United States fifty years ago. Yet, until the recent work by Lor and her colleagues, there were no tools to provide accurate diagnoses of hearing loss among Hmong speakers.
The lists also benefit native Hmong speakers who speak English. “Having the list in the native language gives a lot of advantage to monitoring hearing status and making treatment decisions,” says Lor.
Her colleagues are presenting at audiology conferences, to encourage wide use of the Hmong word lists.
“There are multiple layers that we have to unpack to make sure the lists are going to be used and available to the population,” says Lor, though interest in the Hmong word lists is growing. “We recently completed a national survey with audiologists to determine which languages they would like to have word lists in. Hmong was requested, highlighting the need for Hmong language materials.”
Another of Lor’s projects is developing a Hmong and English medical dictionary.
“Often dictionaries are developed by researchers or professionals, leaving out the people who are the users,” says Lor. She’s developing the dictionary with community members, clinicians who work with the Hmong community, and advisory groups of family and professional interpreters.
“We’ve collected data from the community on how they express certain conditions or health concepts,” says Lor. “Then we worked with the advisors to translate that. Now we’re in the phase of testing it, bringing it back to the community” to ask, “Does this make sense? Is it culturally relevant?”
“What we’ve learned from the Hmong community and interpreters is that a simple technical or literal translation is insufficient,” explains Lor. “Our translations need to encompass cultural nuances and the unique ways in which individuals express themselves. This will ensure that the Hmong translations are understandable to the Hmong community.”
If providers always expect a direct word-for-word translation, “that creates miscommunication and a ripple effect of poor care,” says Lor.
“We’re trying to bridge the gaps between the differences in mental models and communication styles,” she says. “This dictionary is nuanced. It has both English and Hmong translations, including both Hmong dialects. We provide practical examples of how terms are used, real-life descriptions, and phrases commonly used by the community to describe their health.”
“In Western medicine, we are so focused on getting a discreet, exact answer,” says Lor. “But some communities of color may not be used to this type of healthcare system. They’re more storytellers. Their physical, spiritual, and mental well-being are interrelated in how they describe how they’re feeling and what they’re experiencing.”
Lor wants to broaden both the use of her tools and the application of her approaches.
“At this stage of my career, we’ve developed and pilot tested a set of tools to enhance communication and improve healthcare access,” she says. “Moving forward, I’m transitioning from intervention research to implementation science to address some of the health disparities and inequities that the Hmong community is experiencing in healthcare settings. I hope that we will have a meaningful impact and be able to use our findings as a model for other communities.”
–Diane Farsetta