Cancer Across the Language Barrier
Joselin Barajas learned from an illness in her family that cancer care is not always a culturally sensitive affair. Her pain management research could improve outcomes for Mexican-Americans, especially for her father.
Helping Latino patients manage cancer-related pain is a personal matter for Joselin Barajas.
As the nursing major was investigating research topics in her junior year, doctors diagnosed her father with colon cancer.
“I got to witness a lack of resources in Spanish as far as health literacy,” said the Fort Worth native. Barajas was born in the United States, but her parents are from Michoacán, a western state in Mexico’s interior.
Watching her father deal with the piles of information in hospitals, Barajas saw the disconnection. “I know that the way cultures approach health care is very different.”
When reading printed materials about chemotherapy, nutrition and pain management, Barajas saw mounds of confusion. “[The materials] kind of leave it in the medical jargon instead of focusing it into normal-people language.”
“In health care, that’s kind of the priority – you have to individualize the care plan to the patient”
One medical flier indicated a need for a patient to address advanced directives, which is the term for end-of-life instructions when patients are no longer able to make decisions about their health. Barajas said the concept does not exist in Mexican hospitals.
After the direct translation of advanced directive, the paperwork included the English words in parentheses. “If they don’t know what the Spanish translation [means], I don’t know what the English being there is going to help,” Barajas said.
As an honors student in the Harris College of Nursing, Barajas appreciated TCU’s holistic approach to health care instruction that takes into account the emotional experience of wellness. She joined the McNair Scholars program, a federally funded effort to lead underrepresented populations into graduate school. The John V. Roach Honors College and McNair require an undergraduate research project, so as Barajas began her clinical rounds for nursing school, she pondered potential topics.
While doctors treated her father with surgery and chemotherapy, Barajas and her mother noticed he underestimated his pain. He insisted on working throughout the treatment regimen, denying that the disease was incapacitating him in any way, despite a change in personality and sleeping habits. Barajas said such stoicism is common among Mexican men. “It’s kind of perceived in that culture that you endure the pain,” she said. “It’s something that’s going to happen.”
“I know that the way cultures approach health care is very different.”
In witnessing her father’s struggles, Barajas decided her research should focus on helping people like him navigate the health care system, specifically in understanding pain management materials.
The honors student worked with Jo Nell Wells, a professor of nursing who has 15 years of experience in studying cancer experiences among Mexican-American patients.
Barajas’ literature review showed her father’s confusion about treatment was not unique. “If you just hand [Latino men] literature, it is not going to be as effective as if you just sit down and have a one-to-one conversation.”
Her research design includes translating from English cancer pain management materials, which discuss medicines, nutrition and occupational therapy. After distributing the translated printouts to a test group, she will revisit the patient participants few weeks later to determine how much information they retained. She also will collect anecdotes about how well her translated and culturally specific materials worked.
At the end of the research project, Barajas plans to create a video outlining different options for managing pain while dealing with cancer. Knowing that some people prefer to listen rather than read, she would like to create a usable tool for Spanish speakers.
In conducting her research, Barajas noticed that groups other than Latinos are underserved in the health care system. When treatments are tailored toward certain racial and ethnic groups, health care providers sometimes assume commonalities within those groups that may not exist.
“In health care, that’s kind of the priority – you have to individualize the care plan to the patient,” she said. “It’s hard to do with everyone because everyone has different backgrounds, cultures, beliefs, but it’s something that maybe we need to think about a little more.”
As for Barajas’ father: “He is doing well,” she said. His cancer is in remission.