(Published in LINKS: Minority Research & Training - Spring 2011 )
Effective health communications is not just about clearly expressing your health message. You must deliver the message using language that literally and figuratively speaks to your audience. To improve communications about Alzheimer’s disease and research, NIA- supported scientists asked participants—60 Latino Puerto Rican and 60 non-Latino White—living in the Philadelphia area how they would characterize Alzheimer’s disease and Alzheimer’s-related clinical trials using their own words.
Participants, depending on their ethnicity, met individually with a Latina or non-Latina research assistant, in a location of their choice. Along with a brief interview, research assistants collected data through a series of free-listing exercises—the research assistant introduced a concept and the participant wrote down all the words he/she associated with that concept.
“For example, the interviewer would ask about ‘the words that come to mind with you think of Alzheimer’s disease’ and participants would make a list,” explains Jason Karlawish, M.D., 1997 Summer Institute on Aging Research attendee and lead author on the paper in Alzheimer’s & Dementia.
Additional interviewing exercises were about symptoms of Alzheimer’s and causes of the disease. Participants listened to a vignette about a wife who cares for her husband with Alzheimer’s disease and then were asked to describe the wife. Participants who were caregivers were also asked to list words about Alzheimer’s clinical trials, including risks/benefits of research and reasons to participate or not in research studies. Responses were grouped according to the participants’ ethnicity and caregiver status.
The Puerto Rican Latino participants were mostly female. Non-Latinos were typically male with more years of education than the Latino cohort.
“We found certain words to describe Alzheimer’s were common among all the participants suggesting they are pervasive in messages about the disease,” says Karlawish. “For instance ‘memory loss’ was a universal expression to describe Alzheimer’s disease as well as symptoms of Alzheimer’s disease. ‘Sadness’ was also a common word used to describe Alzheimer’s among all groups except Latinos who weren’t caregivers.”
Ethnicity played a role in the responses, as well. Latinos, especially those who were caregivers, used words related to behavioral and emotional problems to describe symptoms of Alzheimer’s more frequently than people who were not Latino. Also, only Latino participants identified psychological and psychosocial stressors (specifically “loneliness” and “stress”) as causes of Alzheimer’s. On the other hand, caregivers who were not Latino listed biomedical causes of Alzheimer’s such as “buildup of plaque” and “lack of brain activity,” indicating they might have a understanding of the disease pathology.
During data analysis, investigators determined that gender, age, and years of education were not as salient as ethnicity and caregiver status.
Overall, Latinos who were not caregivers had the least knowledge about Alzheimer’s disease. In fact, some could not come up with any words to describe Alzheimer’s. Researchers suggest that providing general information about Alzheimer’s disease could be an important health education message for the Latino community.
In the study, researchers defined a caregiver as someone who had a friend or family member with Alzheimer’s disease and who either assisted the patient with activities of daily living or decision-making or provided information to health care professionals. They found that the Puerto Rican Latino caregivers were mostly adult children and non-Latino caregivers were generally the spouse of the patient.
While Latino and non-Latino caregivers shared some common views of Alzheimer’s, the researchers also found ethnicity did shape the caregiving experience. For example, Latinos never used the term “caregiver” to describe the wife of the Alzheimer’s patient in the vignette.
“Interestingly, no participants used the word ‘burden’ to describe the caregiver’s role, so this word might be best avoided in materials targeted to caregivers,” says Karlawish.
Researchers identified differences between how Latino and non-Latino caregivers characterized the risks and benefits of clinical trials for the Alzheimer’s patient and caregiver. Most caregivers listed “time” or “side effects” as reasons to not participate in a clinical trial. But non-Latino participants also mentioned travel, concerns about receiving a placebo, and creating false hopes as deterrents, while some of the Latino caregivers did not list any downside.
In listing the benefits of participating in a clinical trial, both Latino and non-Latinos included patient improvement and improved memory. But, there were also differences. Some Latino caregivers said that learning more about the disease would be a benefit. Only non-Latinos identified helping others and helping research as benefits to participation.
Findings from this study support the notion that when it comes to Alzheimer’s messaging, one size does not fit all. “To be most effective, communications materials should account for differences in how Latinos and non-Latinos view the disease, the caregiver’s role, and clinical trials,” recommends Karlawish.
For example, the research suggests that the difference in how Latino and non-Latino respondents viewed clinical trials could be important to developing culturally appropriate recruitment materials. Materials aimed at recruiting Latinos, for instance, might be more effective if they describe the clinical trial as an educational opportunity for the caregiver, and materials for non-Latinos could portray participation as an altruistic opportunity. The researchers encourage additional research to determine if their findings apply to other Latino and non-Latino groups and have a wider application to Alzheimer’s communications.
Reference: Karlawish J, Barg FK, Augsburger D, et al. What Latino Puerto Ricans and non-Latinos say when they talk about Alzheimer’s disease. Alzheimer’s & Dementia. 2011. 7(2):161-170.