Moffitt Cancer Center finds language, cultural barriers prevent Hispanic participation in trials
Hispanic cancer patients rarely participate in clinical trials, but researchers want to tailor a Spanish DVD to help change this. To create a relevant educational tool, researchers at the Moffitt Cancer Center in Tampa, Fla., investigated why awareness of and participation in trials are so low in this population.
Using focus groups with 36 Spanish-speaking cancer survivors from Tampa and Puerto Rico, researchers found a language barrier, as well as a cultural idea that only doctors, not patients, guide treatment decisions, may help account for low participation rates.
Looking for ways to improve knowledge and participation for Hispanic patients, the researchers used feedback from the focus groups to help develop a Spanish booklet and video to educate and empower patients to participate in treatment decisions.
The study was published online in May by the Journal of Health Communication: International Perspectives.
The 45.5 million Hispanics living in the U.S. are the nation’s fastest growing ethnic group, and there is a need to develop healthcare educational materials that target their language and culture. These educational materials should not merely be translated from English, the researchers said, but should be adapted to meet the group’s informational needs in a culturally appropriate way.
“We found that Hispanic patients who prefer information in Spanish had different informational needs and concerns than non-Hispanic patients,” said study lead author Gwendolyn P. Quinn, Ph.D., scientific director of the Survey Methods Core Facility and member of the Health Outcomes and Behavior Program at Moffitt. “Keeping that in mind, we developed educational materials using a social marketing approach, which targets a specific audience, instead of creating a generic product for everyone. This approach increases the chances a patient may relate to the material, making their behavior change more likely.”
The social marketing intervention in this study was aimed at increasing clinical trial participation by Hispanic patients. However, the researchers found several examples of culturally based ideas that may have kept patients from enrolling in a clinical trial. For example, there was confusion among Hispanic patients over why a doctor would ask them to make a treatment decision, such as participating in a trial. The prevailing cultural idea, they found, was that Hispanic patients had a core belief that the doctor will tell them what to do. Also in Hispanic culture, the patient relies on his or her family to help make healthcare decisions.
Their research showed a need to present culturally tailored information for specific audiences. The researchers are using the Spanish video and booklet in a randomized clinical trial to evaluate the effectiveness in improving clinical trials perceptions of Spanish-speaking cancer patients.
“We feel the educational materials we developed will empower Hispanic patients by improving their capacity to make healthcare decisions, such as enrolling in a clinical trial,” explained Quinn. “They may say no, but they will be prepared with knowledge about the purpose of clinical trials and will not be making an uninformed decision.”
Located in Tampa, Moffitt is one of only 41 National Cancer Institute-designated Comprehensive Cancer Centers, a distinction that recognizes Moffitt’s excellence in research, its contributions to clinical trials, prevention and cancer control.