Language barriers and the immigration status of caregivers appear to impact the care of Hispanic children with cancer and affect the experience of the families within the medical system.

This study was conducted among the primary caregivers of pediatric patients with cancer who were being treated at the University of Utah, where 46 participants completed Spanish surveys and 323 completed English surveys. The surveys asked the caregivers to evaluate various aspects of the child’s care that included how soon after recognizing a symptom they sought care, how satisfied they were with the care, and whether the child was in a clinical trial. The survey also assessed financial, emotional, and language barriers to the child’s care.

More than 65% of the Spanish-speaking respondents, who were defined as any caregiver who reported Spanish as their primary language, reported problems with their ability to speak English. Among the Spanish-speaking respondents, 70% reported that at least one member of their household had “undocumented” legal status, and 13% reported avoiding or delaying care due to their immigration status.

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When asked if their child was enrolled in a clinical trial, the answer was yes for 70% of the Spanish-speaking caregivers and 40% of the English speakers. However, when the researchers verified this information, 32% of the Spanish speakers and 12% of the English speakers were incorrect about their child’s enrollment status. Researchers interpreted these findings as the caregivers not fully understanding the informed consent process.

More of the Spanish-speaking caregivers reported feeling that the potential side effects of therapy were not well explained compared with English speakers. However, Spanish-speaking participants were more satisfied with their child’s overall care.

“Ensuring good communication with patients and their families is as important as the actual therapy we give, regardless of what language is spoken,” said Mark Fluchel, MD, of the University of Utah Primary Children’s Medical Center in Salt Lake City. “However, for families for whom there is a language and possibly a cultural barrier, extra care needs to be taken to make sure we are providing the best care possible.”

Among Spanish-speaking participants, 37% reported not feeling fulling understood by the oncology staff, and 22% reported that they had falsely claimed understanding the oncology staff because they were embarrassed that they did not speak English. Further, 11% were uncomfortable asking for an interpreter, and 33% felt their child would have received better care if English was their first language.

“As is the case with English speakers as well, we cannot assume that everything we say is understood,” Fluchel said. “The most important thing we can do is to quickly establish a trusting relationship with patients and their families and make sure they are comfortable asking for clarification. Once that kind of relationship is established, I think communication errors are less likely.”

This study was presented at the Fifth American Association for Cancer Research Conference on The Science of Cancer Health Disparities in San Diego.