This piece was produced in conjunction with Missouri Business Alert, a digital newsroom that provides business news from across the state of Missouri.
After being diagnosed with HIV 18 years ago, Deana Hayes was so frustrated that she left Missouri. It took her three years to come back and confront the disease.
Years after returning to Missouri, she participated in the SnapShots Project where she and other participants told their stories of managing HIV and medication through pictures. Hayes took pictures of her medications, hats and pumpkins. She said those pictures recorded changes in her life and captured her nuanced feelings. For Hayes, taking photos and sharing stories provided an outlet for her feelings while the photos were empowering for other participants. Most importantly, it helped patients focus on their strength and positivity.
“This project is the best project that I have ever been associated with the whole years of my HIV,” Hayes said. “A lot of people had a hard time sitting around and talking about it…but it was easier for them to go out, take pictures, come back in and then talk about the pictures. That kind of helped them to face what their struggles were and overcome the struggles as a group.”
The project, which lasted from August 2013 to December 2014, was a joint effort of Michelle Teti, an assistant professor of health sciences at the University of Missouri, and the Truman Medical Center in Kansas City. Sixteen participants were encouraged to take pictures of how they managed HIV and medications and to share their stories with one another in groups. The research project studied how telling stories through photos can psychologically and physically benefit people living with HIV.
At the end of the project, participants used their photos to create 10 posters to showcase their experience of living with HIV. Teti said those photo stories not only inspired empathy and created a caring culture in medical offices, but also provided helpful health education materials for the medical center, which helped health care providers understand HIV patients’ needs, design interventions and create health education materials.
“I believe that using photo stories really help people gain insights of their own experiences and relate to other people in a way that can really let other people know that they are not alone in the situation,” Teti said. “It really adds a human element to the health problem, helps people sort of sort through how complicated it could be and solve problems around health decisions.”
Teti’s SnapShots Project is just one example of an increasing trend of digital storytelling in health care. Some in the industry are turning to digital storytelling to help their patients cope with their illnesses.
Last month, the Missouri School of Journalism and the Reynolds Journalism Institute hosted the first digital health storytelling conference. Twenty health professionals, journalists and storytellers across the nation gathered in Columbia, Mo., to discuss how digital storytelling could be used in health care.
Pip Hardy, a social entrepreneur based in U.K., co-founded Patient Voices, an e-learning program that uses video storytelling to help people understand health care. She traveled all the way from the United Kingdom to participate in the conference. Hardy said digital storytelling is very therapeutic for patients and it could transform health care for the better in the near future.
“In a way, it’s finding a different medium that is going to be more suitable for new world, in which everything is conveyed digitally,” Hardy said. “So digital stories are really a very effective way of doing that.”
Although digital storytelling is considered a powerful tool in health care, it also raises ethical concerns among some experts. Victoria Shaffer, an associate professor of health sciences and psychological sciences at the University of Missouri, studies the impact of storytelling in patients’ medical decision-making process.
“We have shown in some context some kinds of stories are actually harmful for decision making, can bias people in certain context and persuade them to choose one option over the other one when that’s not particularly appropriate,” Shaffer said. “So I think there should be more thoughts about choosing the stories that go to the website such that your goals match the content you put out there.”
Hardy is optimistic about the future of digital storytelling in health care. Given the right strategies and tools, she said she believes social media can open the door to authentically rich and deeply human experience.
“It’s a right time for digital storytelling in health,” Hardy said. “I think people are recognizing the power of stories. We need to learn to listen. I think if we can acknowledge the power and risks of sharing stories. It will make us all better human beings and probably help us all take care of our health a little bit better.”
Hayes is now a peer educator at Truman Medical Center’s Infectious Disease Clinic in Kansas City where she helps others living with HIV. She explains the basics of HIV to newly diagnosed patients, connects them with resources they need, accompanies them at the clinic, meets with those struggling with medications and motivates them to fight illnesses. She said many people who serve patients with mental health challenges have come to her and wanted to apply digital storytelling in their practice. She said she hopes more health care providers will adopt digital storytelling in the future.
“It helps to address a lot of issues in our community. It helps to bring awareness to HIV,” Hayes said. “It could be used in any health care. I personally love it.”
