Infusing research with cultural understanding
A Hmong social worker sets her sights on ending health disparities
When May Ying Ly was asked to assist in developing a cervical cancer prevention program for the Sacramento Hmong community, she quickly agreed to the project. A leader in the Hmong community and a Hmong refugee herself, Ly had launched the Hmong Women Heritage Association and led it for 13 years. She immediately recognized the challenges: there is no simple translation for the term “cervical cancer” in the Hmong language, and Hmong people do not discuss death.
Ly sought the challenges because the project was intended to resolve a major health disparity among Hmong women. Yet, taking on projects that tackled topics that are sensitive — such as cervical cancer — or that are considered a cultural taboo — cancer — was a daunting challenge. She needed to find a way to translate English terminology into Hmong, which lacks an equivalent term, while also dispelling the cultural shunning of the word “cancer,” which is synonymous with death.
“To speak of cancer is to wish death as a self-prophesying act upon a person,” Ly said.
She knew she needed to develop a culturally responsive way to introduce the concept of cancer prevention in order to save lives.
These challenges led this soft-spoken social worker, who dedicated the past two decades supporting the Hmong in Sacramento, to recognize that she needed to do even more. With the help of mentors who inspired and pointed the way for her, Ly saw an opportunity at the Betty Irene Moore School of Nursing at UC Davis to earn a doctorate in health care leadership that would provide the skills and tools she needed to find those solutions.
“We know there are cancers, chronic disease such as diabetes, and other health disparities faced by the Hmong community” Ly said. “But data on the Hmong and many other ethnic communities is limited or nonexistent. In order to address the health disparities in our community, we need more research.”
Ly expects to earn a Doctor of Philosophy in Nursing Science and Health-Care Leadership this June after completing a dissertation on understanding cardiovascular risk among Hmong Americans. She dreams of finding solutions for Hmong refugees worldwide, in addition to her Sacramento community.
Katherine Kim, an assistant professor at the School of Nursing, said students like Ly are perfectly positioned to conduct research in health disparities.
“May Ying has unique skills and knowledge that no one else has,” Kim said. “It’s more than language. She knows the history of the people, their journey and she has access to the community. We need more people who have that kind of knowledge who can then apply their knowledge in a scientific way.”
A cultural broker
The Hmong people make up and ethnic group that originated in the mountainous regions of China, Vietnam, Laos, Myanmar and Thailand
About Hmong Americans
The Hmong people make up and ethnic group that originated in the mountainous regions of China, Vietnam, Laos, Myanmar and Thailand. The Hmong are often considered agrarian and nomadic because of their gradual southward migration in China in the 18th century to avoid political unrest and find better farmlands.
The Hmong immigration to the U.S. launched when the Central Intelligence Agency recruited thousands of Hmong people in Laos to fight against communist forces. The “Secret War,” which occurred during the Vietnam War and the Laotian Civil War, was followed by hundreds of thousands of Hmong fleeing to Thailand for political asylum. The first Lao Hmong refugees arrived in the U.S. in December 1975. Since then, some 127,000 Hmong refugees were accepted into the U.S.
The largest Hmong populations are in California, Minnesota, Wisconsin and North Carolina. California has the largest Hmong population in the U.S., with a large percentage of Hmong Americans residing in Central Valley communities from Fresno to Marysville. With a population of more than 30,000 Hmong, Sacramento has the third largest number of Hmong refugees, behind only Minneapolis-St. Paul and Fresno, Calif.
Ly said she first served in a role supporting research in the Hmong community when she assisted author Anne Fadiman, who wrote the award-winning book The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors and the Collision of Two Cultures. More than an interpreter, Ly was what Fadiman called a cultural broker, who helped Fadiman access and better understand the Hmong community.
“This experience provided me with an opportunity to look at my own culture from a different perspective,” Ly said. “I also learned how important research was to finding out solutions to a problem.”
Ly worked her entire adult life with socioeconomically challenged communities. As a social services eligibility worker, she was introduced to the poverty, mental health problems and violence that many Hmong people experience. She quickly realized the American social service system could not address the psychological and cultural complexities that many Hmong families face, especially Hmong women.
She and a small group of Hmong women began working directly with other Hmong women and their families to provide interpretation, transportation and family support services to ease the transition into a new American life. After five years of operation, the group was fully funded by 1999 to establish a nonprofit organization, the Hmong Women Heritage Association (HWHA), and Ly stepped up to be the agency’s founding executive director.
As a Hmong woman whose traditional expectations were confined to the home, Ly faced many barriers in combating domestic and gender-based violence. She was branded by many in her community as a woman working outside of her place and as a woman working against her community when she advocated for and assisted victims. Ly said what kept her going despite the backlash was the knowledge that when a woman walked through the agency’s door, it was her last resort and “there were many women who walked through our doors.”
She worked diligently to bridge the cultural divide and respond by organizing a Clan Advisory Council, which includes elders and leaders from each of the Hmong clans in Sacramento. This helped the HWHA gain support from within the community and also provided the clan leaders a platform to learn new ways of leadership and authority that introduced them to mainstream systems and practices of the U.S.
When Ly’s organization partnered with the UC Davis Comprehensive Cancer Center as a consortium member of the Asian American Network for Cancer Awareness, Research and Training to conduct several research projects, her journey became full circle.
“Now people know what cancer is. We can talk about cancer and there is less fear of self-prophesying death,” Ly said about her work with the Cancer Center. She considers herself “one of the luckiest Hmong people to be alive when hundreds and thousands died along the way in the massive exodus from war-torn Laos in the aftermath of the Vietnam Conflict. There’s so much more I can do. I have had so many opportunities and I want to use those opportunities to help other immigrants and other refugees.”
As a Hmong person with cultural knowledge of the community, she used her expertise to enhance her research. An aspect of her research relied on a name algorithm developed by the North American Association of Central Cancer Registry to infer Hmong ethnicity from electronic medical records. After using the algorithm, Ly refined it to include more Hmong names and delete names that were not Hmong.
“She used an informatics approach to address health disparities,” Kim said. “This is a great example of why multiple perspectives are needed to resolve health disparities and really understand why certain groups of people face chronic disease and other health issues.”
For Ly, her dissertation work is only a beginning.
“I am Hmong. I am a woman. I am a researcher and scientist,” Ly said. “I want to use all of these things to improve health for others, whether Hmong Americans or through global service to Hmong in Thailand and other nations.”