SAN DIEGO — 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, according to data presented at the Fifth AACR Conference on The Science of Cancer Health Disparities, held here Oct. 27-30, 2012.
"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, M.D., assistant professor in the department of pediatrics, division of hematology-oncology at 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."
Fluchel and his colleagues conducted a study among the primary caregivers of pediatric patients with cancer who were being treated at the University of Utah. Forty-six participants completed Spanish surveys and 323 completed English surveys. Caregivers evaluated various aspects of the child's care, such as 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 percent of the Spanish-speaking respondents, defined as any caregiver who reported Spanish as their primary language, reported problems with their ability to speak English. Seventy percent of Spanish-speaking respondents reported that at least one member of their household had "undocumented" legal status. Thirteen percent reported avoiding or delaying care due to their immigration status.
When asked whether the child was enrolled in a clinical trial, 70 percent of Spanish-speaking caregivers and 40 percent of English-speaking caregivers reported that the child was enrolled in a clinical trial. However, when the researchers verified this information, they found that 32 percent of the Spanish-speaking and 12 percent of the English-speaking caregivers were incorrect about the child's enrollment. Researchers interpreted these findings as the caregivers not fully understanding the informed consent process.
More Spanish-speaking caregivers reported feeling that the potential side effects of therapy were not explained well compared with English speakers. However, Spanish-speaking participants were more satisfied with their child's overall care.
Among Spanish-speaking participants, 37 percent reported feeling not fully understood by the oncology staff, and 22 percent reported that they had falsely claimed understanding the oncology staff because they were embarrassed that they did not speak English. Eleven percent reported being uncomfortable asking for an interpreter, and 33 percent felt that 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."
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The impact of language barriers and immigration status on the care of Hispanic pediatric cancer patients. Mark N. Fluchel1, Anne Kirchhoff1, Vannina Gwilliam2, Roberto Montenegro1, Anita Kinney1. 1University of Utah, Salt Lake City, UT, 2Primary Childrens Hospital, Salt Lake City, UT.
Hispanics are the fastest growing minority group in the U.S. and childhood cancer treatment centers care for an increasing number of these patients. For Spanish-speaking families, language and cultural barriers may impact patient care and the families' experience within the medical system. We compared Spanish and English speaking caregivers' perspectives on the medical care experienced during childhood cancer treatment and report on whether immigration status affected decisions about their child's care.
We administered N=46 (72-item) Spanish and N=323 (48-item) English-language surveys to the primary caregivers of patients diagnosed ages 0-18 years with cancer, who were being treated at a university-based pediatric hospital. Survey domains included time from first symptoms to diagnosis, clinical trial status, satisfaction with care, measures of financial and emotional burden, and communication barriers. We compared our domains of interest for Spanish and English speaking respondents using chi-square and t-test statistics. Spanish speaking respondents were defined as anyone for whom Spanish was their self-reported primary language.
Most common cancer diagnoses were leukemia (40%), lymphoma (11%), sarcoma (12%), and brain tumor (11%). Median time since diagnosis was 24 months. Of Spanish speaking caregivers, 70% reported their legal status as undocumented. Over 65% of Spanish-speaking caregivers rated their ability to speak English as not well to not at all.
Mean time from onset of symptoms to diagnosis was 15 and 9.6 weeks for Spanish and English speakers, respectively (p=0.15). Of Spanish speaking respondents, 13% reported avoiding or delaying care due to immigration status.
Of Spanish and English speaking respondents, 70% and 40%, respectively, reported being enrolled in a clinical trial, (p=0.007). However, upon verification of enrollment status, 32% and 12% of these Spanish and English speaking respondents were incorrect (p=0.005). Twenty-two percent of Hispanic respondents, and 28% of undocumented caregivers, reported their immigration status affecting their decision to enroll in a clinical trial.
As measured on a Likert scale (0-100), Spanish speakers felt that the potential side effects of therapy were explained less well than English speakers (mean 86 vs. 95, respectively, p=0.002). Yet, the Spanish speaking participants were more satisfied with their child's overall care (mean 97 vs. 92, p=0.01). Perception of financial and emotional burden of treatment did not differ.
Of all Spanish speakers, 37% reported that they felt they were not fully understood by the oncology staff, with 22% reporting that they have falsely claimed understanding due to embarrassment over not speaking English. Lastly, 11% reported being uncomfortable asking for an interpreter while 33% felt that their child would have received better care if English were their first language.
In conclusion, language barriers and the immigration status of caregivers may impact the care of pediatric cancer patients due to delays in seeking care, the inadequate communication of treatment risks, and the reluctance of caregivers to admit misunderstandings. Many families, especially those who primarily speak Spanish, are poorly informed about whether or not their child is enrolled on a clinical trial, suggesting that the consent process is inadequate in this population.