Cancer prevention in a Latino community

Published on June 21, 2016

storefronts in downtown West Liberty
Downtown West Liberty. Photo by David Wilson/Flickr

In many ways, West Liberty is a typical small Iowa town. The main street of this east-central Iowa community boasts a movie theater, hair salons, several restaurants, and other small businesses. What sets the town of 3,700 residents apart are its demographics—West Liberty is the first Iowa town to have a majority Latino population.

West Liberty is just one reflection of Iowa’s increasing diversity. From 2000  to 2014, the state’s Latino population grew 110 percent and now makes up 5.6 percent of Iowa’s total population.

The town’s diversity often attracts groups wanting to offer health care or other social services. However, says Jason Daniel-Ulloa, clinical assistant professor with the Department of Community and Behavioral Health, successful programs depend on trust that’s built with the community over time.

“You have to be present,” says Daniel-Ulloa. “You can’t roll in from out oftown, put up a couple of fliers, and have people to show up to your meeting.”

Concern about Cancer

In 2012, a team of College of Public Health investigators, including Daniel-Ulloa, began studying cancer issues and priorities in the state’s Latino population with funding from the Iowa Cancer Consortium. Cancer is the leading cause of death among Latinos, according to the American Cancer Society.

The researchers narrowed their focus to West Liberty, where they partnered with residents on community-based participatory research in cancer prevention. St. Joseph’s church, the local Catholic parish, has been an important partner in facilitating the effort.

“The church is a gathering place for the Latino community,” says Rev. Greg Steckel, pastor at St. Joseph, who helped identify a group of six church members to take part in a Photovoice project.

The participants took photos of what they perceived to be barriers to cancer prevention, then held group discussions. To disseminate the results of the project back to the community, a bilingual forum was held in in 2014, drawing about 50 residents. The forum revealed a community concern about cervical cancer, which had caused several residents’ recent deaths.

“The Photovoice project demonstrated that people get enough information about cancer to be afraid of it, but don’t really know what to do about it,” says Daniel-Ulloa.

Based on that feedback, the team developed a human papillomavirus (HPV) education intervention. HPV is the most common sexually transmitted infection in the United States and can cause cervical and other cancers. The HPV vaccine, given in a series of three doses over six months, protects against HPV-related cancers. The CDC recommends vaccination for all boys and girls ages 11 or 12, as well as catch-up vaccines for males through age 21 and for females through age 26 if they didn’t get vaccinated as adolescents. (See a related story about an HPV vaccine study on page 21.)

The intervention included the video Tamale Lesson, which uses storytelling to educate viewers about cervical cancer prevention and screening. Group discussions helped define what people did and didn’t know about cancer, HPV, and the vaccine.

“What was a revelation to me is that there’s a stigma attached to cancer in the Latino community that is culturally sensitive,” notes Steckel. “Cancer has a sense of guilt attached to it—that you must have done something to get this. That gray area is true for everyone, but it’s accentuated in the Latino community.”

A Sustainable Solution

University of Iowa third year medical student Brian Guetschow gives a flu shot to Jose Santos of West Liberty
University of Iowa third year medical student Brian Guetschow gives a flu shot to Jose Santos of West Liberty. (The Gazette, Cedar Rapids, Iowa)

The research team is now working to provide free HPV vaccinations to West Liberty residents. The effort is part of a pilot study intervention funded by the Cancer Prevention and Control Research Network and administered through the UI Prevention Research Center.

Another partner in the effort is the University of Iowa Mobile Clinic, a student-run organization that provides free basic health services to underserved populations. The clinic visits West Liberty every month.

The goal is to make the intervention sustainable by training a community health worker within the church who can conduct information sessions about HPV vaccination and direct people to resources.

“We’re trying to get people to get the first shot in the Mobile Clinic, then refer them to a nearby pharmacy or someplace they can get in and out with little paperwork and wait time,” explains Daniel-Ulloa. “The biggest barrier for the community is time. When you’re working hourly and the clinic closes before you get off work, it costs you money [to take time off].”

The researchers will track how many people receive the vaccine as a result of the intervention.

Building Trust, Embracing Ambiguity

As Daniel-Ulloa noted earlier, gaining a community’s trust doesn’t happen overnight.

“You have to take the time to get to know people and build relationships,” says Steckel, who has lived in West Liberty for more than three years and has worked with Daniel-Ulloa for much of that time. “You can’t come in and say you have all the answers. If you try to dominate the situation, you’ll run into resistance.”

“We found people who the community trusts,” Daniel-Ulloa says of the process. “We sat down with them and asked, What do you want us to do? And then you do it. You make an impact by creating relationships, being present in the community, and caring.”

Once relationships are established, cultural differences can still present some unexpected challenges. Meetings, for instance, may veer wildly from an outside organizer’s agenda.

“Latin America is built on a communal experience,” explains Daniel-Ulloa. “That’s why you talk for 45 minutes before you get down to business.”

Steckel echoes that events flow at their own pace, which runs counter to the time-conscious Anglo culture. “Leadership is also very fluid,” adds Steckel, who is Anglo. “You can easily be offended and offensive. I’ve learned to be aware of my own prejudices. I have different expectations, but I have to embrace the ambiguity.”

“You can’t plan everything,” Daniel- Ulloa agrees. “You can try, but you have to understand that it will disintegrate. And that’s difficult for providers. We train providers to be very uncomfortable with ambiguity.

“And that is the opposite of what you need to work in the community,” Daniel-Ulloa continues. “It’s more than being okay with ambiguity, you have to like it. Because it’s exciting. You have to be ready to change the course of the program.

“Set your eyes on the big goal you’re trying to get to,” Daniel-Ulloa advises, “and be creative about how you know that you’re getting there.”

This story originally appeared in the Spring 2016 issue of InSight