Through the Lens: Appalachian Youth Document Cancer in Rural Kentucky

LEXINGTON, Ky. (Feb. 4, 2022) – If you look at a photograph of a butterfly, what thoughts run through your mind?

At first, you might notice its patterns and bright coloring. Or perhaps you dwell on its surroundings – leaves, flowers and other foliage.

For one Carter County high school graduate, the butterfly represents a deeper meaning.

“A butterfly resembles change,” said 19-year-old Brianna Fry. “Kentucky needs change. We need a breakthrough.”

Fry was one of 25 high school and University of Kentucky undergraduate students participating in the UK Markey Cancer Center’s Appalachian Career Training in Oncology (ACTION) Program’s photovoice project. The project was intended to encourage Appalachian Kentucky youth to consider determinants of cancer and visualize the effects that cancer has on their families or communities. Students captured photos of cancer-related objects around them as a way to record and reflect on their situations and surroundings, ultimately promoting conversation and understanding of the prevalence of cancer in their personal lives and greater communities. An analysis of the photovoice project was recently published in the International Journal of Environmental Research and Public Health.

Cancer is the second leading cause of death in the United States, and Kentucky is home to the highest rates of cancer incidence and mortality in the country. The problem is significantly concentrated in the Appalachian region of the state, an area widely known for its culture and history of tobacco growth and use. Social and ecological factors also contribute to the cancer burden in Appalachian Kentucky, including lower-income and education levels, barriers to access and lack of screening and immunization.

Perhaps not surprisingly, nearly all of ACTION’s participants know a friend or family member dealing with cancer.

“Every time I think of My Old Kentucky Home, I think of what it means to me, and how important it is that we see a decrease in cancer cases,” Fry said. “I believe we can do it. I believe we will see a change.”

Another student, 16-year-old Hanah Whisenant, an ACTION high school student from Lawrence County, Kentucky, “sees” cancer in a tree’s roots.

“When I look at this picture, I see something taking root in the surrounding area. I see something embedding itself into the pre-existing life around it. I see something trying to survive off of neighboring life, just like how cancer does,” Whisenant said. “Cancer takes root in a person, and it is grueling to get rid of once it is lodged in place – just like the entangled roots of this tree.”

Or perhaps you see cancer in weeds, like 18-year-old Holly Dickens, from Rowan County, who is now an ACTION alum.

“The way cancer can metastasize in someone’s body reminds me of how vines and weeds can take over forests if left uncared for,” Dickens said.

Nathan Vanderford, Ph.D., director of the ACTION program, said nearly 240 photos were collected from the students. In collaboration with the UK Arts in HealthCare program, 54 photos were chosen to display at two Kentucky art galleries, one in Lexington and one in Morehead. The exhibit was also displayed at the Downtown Public Library in Lexington.

Most photos submitted by students captured known cancer risk factors, like tobacco, diet, environmental exposures and chemicals. Karlee Compton, a 15-year-old from Montgomery, County, Ky., took a photo of a fast food meal saying, “Continually eating an unhealthy diet can contribute to obesity, which can lead to cancer.”

Visitors to the exhibitions were encouraged to leave written comments and impressions. Vanderford said people expressed the emotional impact of the photographs and noted that the exhibit helped them learn something new.

“Hearing and seeing the firsthand experiences of young Appalachian community members can be a powerful motivator for others to inspire social change,” Vanderford said. “Young students conducting research in their own communities were able to make connections between the cancer disparities facing the region and their own experiences. It demonstrates that young people are apt to educate others around them and be agents of change in their communities.”

The ACTION photovoice exhibit is currently installed in the Healthy Kentucky Research Building on UK’s campus.

“We’re pleased to host this exhibit at the Healthy Kentucky Research Building, home to researchers tackling Kentucky’s most pressing health challenges, including cancer,” said Vice President for Research Lisa Cassis. “The UK Markey Cancer Center, the focal point of our Cancer Research Priority Area, is conducting leading-edge research and supporting vital programs like ACTION to train students to be ambassadors for cancer prevention and screening in their communities.”

ACTION is a Youth Enjoy Science Program, funded by a grant from the National Cancer Institute, that provides high school and undergraduate students from Appalachian Kentucky an opportunity to participate in cancer research, clinical shadowing, education and career development, and community outreach and engagement activities. ACTION aims to prepare the next generation of Appalachian Kentucky health care providers, researchers and education specialists and, through community engagement, increase cancer awareness and literacy levels in the region.