When Terrah Foster Akard was a doctoral student in nursing, she heard about a child with a terminal illness who had collected egg-shaped pantyhose containers while he was in the hospital. After he died, his family members found the containers hidden in different places in his bedroom—one under the pillow, for example, and another behind the dresser.
When they opened each plastic egg, they found a special message that the boy had written for them. It was as if he had imagined himself as a kind of Easter Bunny, but one who left behind messages about the importance of memory and the endurance of love rather than candy and toys.
The story moved Akard, and inspired her to devote her career to helping kids and families cope with the emotional and psychological trauma at the end of a child’s life. Legacy projects just might help them do that, she thought. “I was really intrigued by kids with life-threatening illnesses,” she says. “I thought they did things and said things differently than other kids. It just seemed to me that they had a different understanding of life than other kids.”
An assistant professor of nursing and medicine at Vanderbilt University, Akard, PhD, RN, CPNP, developed an interest in palliative care early in life. When she was a young girl, her baby sister died from a rare kidney disease. Later on, she learned that her college softball coach had a child with a life-threatening illness. Akard and her teammates would accompany the coach to the local children’s hospital, volunteering their time with pediatric patients.
Since then, helping other children and families cope with terminal illness has become her life’s mission.
After earning a bachelor’s degree in biology and a master’s in nursing, Akard worked as a nurse practitioner in a primary care clinic where she cared for children with and without terminal illnesses. A few years later, she decided to specialize in pediatric palliative care, making it the focus of her nursing research. She enrolled in a doctoral program in nursing science at Vanderbilt and studied the bereavement processes experienced by parents and siblings of children who died of cancer. She found that bereaved family members perceived that some ill children yearned to communicate feelings with loved ones and sought tangible ways to be remembered.
Akard built on that study with a research project funded by the Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholars program that allowed children with advanced cancer to create personalized videos about their lives to give to loved ones.
Studies have shown that such “legacy” projects help adults cope with terminal disease, and the benefits can go beyond the patient. But there is little research into the effects of similar projects—such as scrapbooking, songwriting, and hand molds—for children.
“In adult populations, researchers have found that these kinds of projects have many benefits for both patients and their loved ones,” Akard says. “We wanted to find out just what this kind of legacy project can mean for kids.” Akard and her team learned that their newly developed legacy-making intervention via digital storytelling for children with cancer was feasible and showed promise to improve coping and adjustment.
She recently received a grant from the National Institute of Nursing Research to develop and test a web-based legacy intervention to expand her potential impact and ultimately improve coping and adjustment for pediatric palliative care populations.