Better cancer education through focused research

Design focus groups to determine point of view

There is no shortage of cancer information available. The difficulty for educators is not in finding facts as much as it is sorting through all the information to find out what is appropriate and delivering it in a way their patient population understands, says Cathy D. Meade, RN, PhD, director of the Education Program at H. Lee Moffitt Cancer Center and Research Institute in Tampa, FL.

That’s why the center developed education toolboxes on prostate cancer for men and breast and cervical cancer for women tailored for two underserved populations: African-Americans and Hispanic farm workers. The materials for the Hispanic toolbox are in Spanish.

The 10-by-13-inch toolboxes contain information to be used in community-based settings. The contents include a video, a flip chart, educational pamphlets for patients, and three laminated teaching sheets that can be used by outreach workers or health care providers. The components of the toolbox were developed with the aid of focus groups so that the content would be acceptable to the target population, says Meade.

An anthropologist was part of the interdisciplinary team that helped conduct the research and provided valuable information. The anthropologist suggested that the focus group discussions first center on how individuals within these patient groups viewed their situation, what their priorities were in life.

After that information was gathered, discussion focused on the groups’ cancer knowledge, attitudes, and beliefs. "In this way, we were better able to glean the issues that are most important to them and hook our cancer message on what their everyday lives are," says Meade.

Through this method of discussion, many ways to tailor the information to each group were discovered. For example, it was difficult to convey the meaning of the term prevention to the men in the Hispanic focus groups. However, one participant identified it as similar to getting your car tuned up. In the videotape, when the narrator talked about getting a checkup for prostate cancer, viewers saw a group of their community members looking under the hood of a car so that they could relate to an everyday situation, explains Meade.

"No matter what level of education, we need to better connect the message to the target population’s own reality," she says. That means doing some investigative work to find out how groups view such things as prevention.

In the African-American group, participants emphasized the importance of religion, prayer, and spirituality. Researchers came to understand that pastors were very respected in the community and people valued their input. Therefore, on the video designed for the African-American community, there are clips of a pastor at a church delivering the cancer prevention message.

When the research team created the educational materials based on the information from the focus groups, they took them back to the people in that population before finalizing them to make sure they were right. People even were asked to evaluate the colors used in the material design to make sure they were appropriate.

Flexible, useful components

In addition to the patient population, the toolbox was designed with input from health care providers and community outreach workers and can be used in a variety of ways. In a group setting, the video can be shown. To teach a person with limited reading skills, the provider could go through the flip chart and reinforce the teaching with the videotape. "It’s the same information; it’s just presented differently," says Meade.

The usual 20- to 30-page facilitator’s guide was eliminated from the toolbox on the recommendation of those who planned to use it for education. "They said they didn’t have time to go through it, so we came up with three very simple teaching sheets," says Meade.

One teaching sheet covers getting started with the program and has teaching tips and resources. A second sheet covers cancer facts and figures on the particular target cancer, either prostate or breast and cervical. The third sheet covers culture and literacy and has abbreviated types of teaching strategies and tips for outreach workers. "We wanted to tailor the sheets to whomever would be using them," says Meade.

A total of 4,000 toolboxes were produced with 1,000 in each category: Education on breast and cervical cancer in English, targeting African-American women; education on breast and cervical cancer in Spanish, targeting Hispanic women farm workers; education on prostate cancer in English, targeting African-American men; and education on prostate cancer in Spanish, targeting male Hispanic farm workers.

The toolboxes, which were produced with a $250,000 appropriation from the Florida Depart-ment of Health, were distributed to a variety of grass-roots and clinical agencies throughout Florida. These included federally funded clinics, missions, and senior centers.

Although the effectiveness of the educational materials that make up the toolbox has not been evaluated formally, informal comments on surveys in each kit have revealed that the content is very useful and relevant. A more formal evaluation to determine if the toolboxes have increased cancer screenings among the target population needs to be done, says Meade.

This project was successful because the team that created the toolbox first determined what their intended audience needed to know and how best to deliver the message, she says. To uncover such facts about a particular population, patient education managers can talk to health care providers who see them as their patients, they can look at the literature, and talk with community members via focus groups, interviews, or surveys.

If a group has low literacy skills, a written survey may not be appropriate. Health care providers often can provide information about the educational levels of the patient population, says Meade.

Don’t assume that high-risk populations don’t want to learn or are unable to learn. The people in the focus groups for the creation of cancer toolboxes revealed that they were interested in learning about themselves and their bodies, she explains. Most will learn if given the right information in the right setting and environment, Meade says. "The folks who we talked with very much liked getting into small groups and having discussions and looking at videotapes. They liked an interactive social setting."

Source

For more information about the cancer education toolbox, contact:

  • Cathy D. Meade, RN, PhD, Director, Education Program, H. Lee Moffitt Cancer Center and Research Institute, Associate Professor, College of Medicine University of South Florida, 12902 Magnolia Drive, Tampa, FL 33612. Telephone: (813) 632-1414. E-mail: cdmeade@moffitt.usf.edu.