Most cancers are easier to treat if detected early, so cancer educators emphasize the benefits of screening and prompt treatment. But for immigrants and other "medically underserved communities," simply handing out a brochure on early detection -- even if it's been translated into the appropriate language -- may not work.
"Medical interventions fail if the intervention does not match the community's level of readiness to address the issue," says Tracy Schroepfer, an assistant professor of social work at UW-Madison.
After a three-year study of the Hmong population in Wisconsin, Schroepfer and collaborator Viluck Kue found that cancer educators were trying to explain cancer detection and prevention to people who don't have a word for cancer -- or a concept for preventing disease.
The Hmong, originally a hill tribe in Laos, emigrated to the United States after the Vietnam war; about 60,000 Hmong people now live in Wisconsin, says Kue, a Hmong who directs the Wisconsin United Coalition of Mutual Assistance Associations, which serves Southeast Asian immigrants across the state.
Previous efforts to educate Hmong people about preventing and treating cancer had fallen flat, says Kue. "A lot of Hmong were scared of chemotherapy and radiation, they saw people who were not helped, who passed away, and so they began to turn down chemo and radiation in favor of traditional herbal treatment. We want to make sure that people are not scared away from western medical treatment, want to show that these treatments can be helpful."
To find out why the traditional approaches to medical education, which are often based on brochures and handouts, were ineffective, Schroepfer and Kue settled on a strategy called community-based participatory research, which relies on the community to set the agenda and to be a partner in carrying out the research.
In contrast to usual academic research, Schroepfer says, the process was governed by the Hmong themselves. "They own the data, and I have to obtain permission to use it. It's a very different way to do research, and it takes a long time because the researcher must be committed to spending the time to build a relationship with community partners."
For research published online in the Journal of Cancer Education, the researchers adapted a "community-readiness assessment" to ask leaders about the Wisconsin Hmong community's efforts to address cancer. Other questions concerned knowledge, beliefs and traditions related to cancer, prevention and western medicine.
Kue identified eight statewide Hmong leaders, and a Hmong graduate student at UW-Madison performed the surveys.
The results revealed a radically different view of health care, says Schroepfer. "When researchers look at a problem, we look at it through our own eyes. It's important to ask, 'What do you see through your eyes?'"
Early detection had no relevance to the Hmong, Schroepfer says. "Some leaders told us there had been no need: 'In Laos, we had no machines to see inside the body. We had to wait until something hurt.'"
Being treated by a young doctor at the hospital can be unnerving, Schroepfer says, because Hmong elders who were born in Asia had no knowledge about the role of a teaching hospital.
Hmong people tend to make decisions as groups, not as individuals, adds Kue. "If somebody in the family is sick, they will usually want the consent of the elders in a medical decision. If my uncle has a heart problem, the doctor may want to do bypass surgery. But if he discusses it with the family and a lot of people think it is dangerous, he'll decide against it."
Leaders interviewed for the study reported that to educate the Wisconsin Hmong, "Hmong community members need to be the educators," Schroepfer says. "They understand the belief system and can talk to people about it, reframe the experience of cancer."
One concept that arose repeatedly in the interviews was the need for a stronger connection between Hmong and American cultures, says Schroepfer. "The leaders are the ones who used the word 'bridge,' and that's why we used it in the title of the article. They say, 'We need to listen to each other. We want to understand your view of health and the health care system, but need you to understand ours.'"
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