Helping Children with Terminal Illness Create Living Legacies

    • October 25, 2012

Problem: Children with life-limiting or life-threatening conditions are at high risk for mental health problems. Yet there is little evidence into what kinds of interventions relieve psychological and emotional suffering for pediatric palliative care patients and their families.

Background: When Terrah Foster was a doctoral student, she learned of 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 Foster, 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, Foster, 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. Foster 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, Foster 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.

Solution: Foster is building on that study with a new research project that has been funded by the Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholars program. She is developing an intervention that will allow children with advanced cancer to create remembrances 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, personalized videos or hand molds—for children.

Many hospitals offer those kinds of activities but others do not, on the grounds that children with severe illness are too sick to participate or will not benefit. “My goal is to find out if this speculation is true or if the contrary holds: that children with a range of prognoses can benefit from legacy projects in a similar way that adults do,” she says.

At the start of her research, Foster interviewed eight children with advanced cancer about what kind of legacy projects they would be interested in creating. She used those suggestions to develop an intervention—in the format of digital storytelling, or personalized videos—to give the children an opportunity to build and document their legacies.

Foster is now working with a team to film about 30 patients as they tell stories about themselves or their lives, describe their favorite activities, or talk about a special object or another subject of their choosing. Each child selects music, photos and pictures to include in his or her video. Foster and her team then produce the videos and give them to the patients.

She is surveying the patients and their parent caregivers about the project’s difficulty level, its attractiveness and its effect on mental health. She will complete the study next year, but she is encouraged by the initial responses. “It’s going really great,” she says. “The families have provided really positive feedback, and the kids love the activity.”

After she finishes, Foster plans to conduct a larger study at various hospitals around the country to determine the project’s broader feasibility and effectiveness. She’s excited about its potential. Each video—including the editing process—takes between two and four hours and, if done on a large scale, could improve mental health at a fairly low cost.

“In adult populations, researchers have found that these kinds of projects have many benefits for both patients and their loved ones,” Foster says. “We hope to find out just what this kind of legacy project can mean for kids.”

RWJF Perspective: The Robert Wood Johnson Foundation is committed to improving the health and health care of all Americans at all stages of life. The goal of the Robert Wood Johnson Foundation Nurse Faculty Scholars program is to develop the next generation of national leaders in academic nursing through career development awards for outstanding junior nursing faculty. The program aims to strengthen the academic productivity and overall excellence of nursing schools by providing mentorship, leadership training, and salary and research support to young faculty.  Foster is a member of the program’s 2010 cohort.

In 1996, RWJF launched a major initiative to improve care at the end of life. The $170 million, 10-year effort helped advance the field of palliative care. RWJF has also supported scholars who have contributed to the field of palliative care and who have helped develop the field of pediatric palliative care.

Read more about the role of nurses in providing palliative care.