The Vanderbilt University School of Nursing and the Palliative Care Research Cooperative have been awarded a $1.8 million grant from the National Institute of Health/National Institute of Nursing Research to recruit children with advanced or relapsed cancer via Facebook and develop a web-based tool so they can create electronic storyboards reflecting their lives.

Principal investigator Terrah Foster Akard believes this will help the children and their parents better cope and adjust to these difficult health conditions. Preliminary data from Akard’s prior work shows face-to-face legacy-making interventions can improve coping and adjustment for children with cancer.

The grant is specifically targeted to children between 7 and 17 who have cancer that is unresponsive to treatment or who are dealing with a cancer relapse. It will also look at coping strategies for parents and caregivers.

The project will start recruiting 170 children in January 2015, and will guide the children to create electronic digital storyboards about themselves.

Along the way, the children will answer legacy-making questions about themselves, upload photographs, videos, and music, and share the finished piece with parents and caregivers. Vanderbilt University Medical Center representatives said the results will add to the greater body of pediatric palliative care and end-of-life knowledge.

“Terrah’s approach is truly innovative. By using social media, the group of children who participate will likely reflect more diversity and aren’t bound by having to be physically located near a research center,” said Ann Minnick, Julia Eleanor Chenault Professor of Nursing and VUSN senior associate dean for research.

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