October 23, 2014

Web storytelling study helps children cope with cancer

Terrah Foster Akard, Ph.D., M.S.N., R.N.

The Vanderbilt University School of Nursing (VUSN) has been awarded a $1.8 million grant by National Institute of Health/National Institute of Nursing Research.

The four-year grant is in partnership with the Palliative Care Research Cooperative (PCRC), and will recruit children with advanced or relapsed cancer via Facebook and develop a Web-based tool so they can create electronic storyboards reflecting their lives.

Terrah Foster Akard, Ph.D., M.S.N., R.N., the principal investigator, believes this will help the children and their parents better cope and adjust to these difficult health conditions.

“Terrah embodies characteristics that all the great researchers must:  curiosity for direction, passion for fuel, and the persistence to overcome roadblocks. Her foundational work shows great promise, and this grant has the capacity to reshape how we can better help children, their parents and loved ones during incredibly difficult situations,” said Linda Norman, D.S.N., R.N., F.A.A.N., Valere Potter Menefee Professor of Nursing and VUSN Dean.

Preliminary data from Akard’s prior work show that face-to-face legacy-making interventions can improve coping and adjustment for children with cancer.

This grant is specifically targeted to children between 7 and 17 who have cancer that does not respond to treatment or who are dealing with a cancer relapse. It will also look at coping strategies for parents and caregivers.

“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, Ph.D., R.N., FAAN, Julia Eleanor Chenault Professor of Nursing and VUSN senior associate dean for Research.

The grant will start recruiting 170 children in January 2015, and will guide the children to create an electronic digital storyboard 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. The results will add to the greater body of pediatric palliative care and end of life knowledge.

The research was supported by the National Institute Of Nursing Research of the National Institutes of Health under Award Number R01NR015353.