Using the Internet for Good

Dante Zelaya

University of Arizona first-year student Dante Zelaya is an 18-year-old former football player with brain cancer in remission. He participated in a digital storytelling research project with Vanderbilt University School of Nursing Associate Professor Terrah Foster Akard. Photo by Jacob Chinn

By Matt Batcheldor

Even before she began working directly with children with life-threatening conditions, Terrah Foster Akard, MSN ‘01, PhD ‘08, was moved by their stories.

In one, a 7-year-old boy stuffed pictures and notes into egg-shaped hosiery containers and hid them around his house like Easter eggs. His family found them after he died. In another, a 3-year-old girl with a terminal illness itemized her belongings, determining who would receive her possessions when she was no longer there.

Something was remarkable about these children facing serious illness, thought Akard, Ph.D., R.N., CPNP, associate professor of Nursing. They had something that healthy children of similar ages didn’t — a unique maturity, an outlook on life. Hearing these stories inspired her to devote her career to help children tell their stories, something called legacy making. She would study the benefits of various storytelling techniques, both on children and their parents, with the goal of quantifying their effects and refining the methods that brought the best results.

“I became a nurse to work with kids who have life-threatening illnesses,” she said. “That was my goal right from the beginning — the palliative care piece was something I really had a passion about.”

Akard is now halfway into a four-year study to recruit children with advanced or relapsed cancer via Facebook and test a web-based tool that helps children create stories about who they are. The research is in partnership with the Palliative Care Research Cooperative (PRCC), and is supported by a $1.8 million grant from the National Institute of Nursing Research of the National Institutes of Health (NIH) under award number R01NR015353.

During the study, she is recruiting 170 children and teens, ages 7 to 17, and has already signed up 100 of them. Using the internet, she is able to study a geographically diverse population from throughout the United States.

“The whole study, including recruitment, intervention and data collection is web-based,” she said.

Social networking for diversity

Akard is using Facebook advertising to find participants for the study. Users of the social network who match certain keywords see the ads, which lead them to a survey. If they meet the eligibility criteria of the survey, they are invited to participate.

Children who qualify for the survey receive access to a web module that asks them questions about who they are and allows them to upload photographs, videos and music. The program generates an electronic storyboard that can be shared with friends and family.

Meanwhile, the children and parents complete electronic surveys to measure if the storytelling intervention is having a positive effect. Akard’s ultimate goal is to gather data about the coping and adjustment of children and families and design a more standardized, evidence-based approach that could be rolled out to a much larger audience.

“It’s easy to use,” she said. “It’s cost-effective. If determined effective, it could be scaled up and implemented fairly easily.”

Her approach was informed by earlier research. She previously discovered many hospitals nationwide are already doing forms of legacy making, but there is no common effort and little data about its impact.

“Everyone’s doing something slightly different, and it’s really just done as an anecdotal kind of service,” she said. “We think it’s helping, but nobody really knows.”

She also learned that most legacy activities are created by hospital staff around the time of a child’s death. Her intervention is designed to involve the parents and begin earlier, when children may feel less sick. The storytelling is not only for children with guarded prognoses, but also for those who may be cured of their diseases.

“We think there would be more positive benefit from that versus the services that are currently offered,” she said.

Finding a calling

Akard said she has found her life’s work in palliative care, though it took years for her to fully understand her calling.

“I always knew I wanted to do something in health care,” she said, but “when I was an undergrad, I was really focused on playing college softball.” After graduating with a Bachelor of Science degree from Jacksonville State University in 1999, she thought to herself, “I can’t be a professional softball player. What am I really going to do?”

Akard, who grew up in nearby Mt. Juliet, Tennessee, had a friend who was studying to become a nurse practitioner through the second degree entry to MSN program at the Vanderbilt University School of Nursing (VUSN).

Terrah Foster Akard seeks to discover how to best help families and young patients cope with serious life-threatening conditions. Photo by Daniel Dubois.

“She told me what it was, and I just thought, ‘That is exactly what I want to do,’” she said. “I came to Vanderbilt and got my master’s in 2001 and became a pediatric nurse practitioner, and I absolutely loved it.”

At the time, she worked in primary care in Mt. Juliet, the first such pediatric office in a growing suburb of Nashville. It was a wonderful experience, she said, but it wasn’t exactly what she wanted to do for the long term.

Something changed when she heard a father whose child had died of cancer speak at her church.

“It was like a light bulb went on when I heard him speak,” she said. “That’s what I wanted to study. What I wanted to do for the rest of my working life was to learn more about those kids and families and learn how to help them in some way.”

She returned to VUSN to pursue a Ph.D. in nursing science, receiving it in 2008. “Research was really my passion and what I wanted to do,” she said. “It was where I needed to be.”

Importance of memory

Akard came under the wing of Mary Jo Gilmer, Ph.D., MBA, R.N., FAAN, professor of Pediatrics and Nursing at VUSN, whose research focuses on enhancing the care of children with life-threatening conditions.

Right away, Gilmer saw the promise in her mentee. “Terrah has always been really motivated and intuitive and wanting to know more about things and why things happen,” she said. “She’s always wanted to be involved in expanding the knowledge base in nursing.”

Gilmer gave Akard the opportunity to work as a site coordinator for her study on parents and siblings of children who had died of cancer. Akard recruited participants and met them at their homes, learning firsthand about their needs.

Through the retrospective study, which became the topic of her dissertation, she learned that respondents said that legacy making was important and that it impacted both children and their families. Her findings led the Robert Wood Johnson Foundation to name her to its Nurse Faculty Scholar program and provide funding for a prospective study of legacy making for children who had cancer.

“We asked kids if there were things they would like to do or say for their friends or loved ones. And it seemed like kids said ‘yes.’”

Next, she asked them about what sorts of activities children their age would enjoy. The feedback pointed to creating a digital storytelling format, which she in turn developed.

“Really what we learned from the kids is they wanted people to know who they were as a kid, and it didn’t necessarily need to be about cancer and the hospital,” she said. “If anything, they wanted it to be normal stuff, like what their favorite things were, what their hobbies were, just who they were.”

The activity was developed to be appropriate for children at any stage of treatment.

“Legacy making does not mean that death is imminent,” Akard said. “It can still co-exist with cure.”

Emotional care

Akard piloted a digital storytelling model, interviewing 30 children and having videographer-created stories that could be shared via YouTube or a personal DVD. She measured their quality of life before and after the storytelling.

The data showed that the process was promising to have impact, she said, “especially on the emotional piece, the emotional part of quality of life.”

Ann Minnick, Ph.D., R.N., FAAN, senior associate dean for research at VUSN and the Julia Eleanor Blair Chenault Professor of Nursing, was her mentor for the Robert Wood Johnson Foundation grant.

“Terrah has always been dedicated to the care of children and their relatives at these very difficult times of life,” she said. “Taking a look at what happens both during and after the illness and perhaps the death, especially for the survivors, is really important. Failure to adjust is associated with all sorts of other health problems, social problems.”

Another grant from the American Cancer Society allowed Akard to develop the web-based storytelling tool she is using in her current study, making it possible to recruit from a wider population.

Advancing the science

Research is one of several hats that Akard wears at Vanderbilt. The others are teaching and service.

She teaches in VUSN’s doctoral program, currently offering courses on grantsmanship and the role of the scientist. She currently mentors a postdoctoral fellow and three Ph.D. students.

“It’s very rewarding to mentor these students, to help grow that next generation so we have a good pipeline to continue advancing the science in the field,” she said.

Her service work includes serving on committees at VUSN and national palliative care organizations, in addition to reviewing grants and manuscripts. Gilmer and Akard are now co-directors of the Pediatric Palliative Care Research Team.

“It’s extremely rewarding work,” Gilmer said. “To feel like we can make even a tiny difference in this very, very critical and difficult point in the journey of children with advanced disease of any kind, then we feel like we’ve done a little something.”

Akard has found her home at Vanderbilt treating the population she feels most drawn toward.

“I don’t think I’d be in the same place if I wasn’t at the Vanderbilt University School of Nursing,” she said. “The support and resources that we have here have helped tremendously.”