pediatric patient navigators

The University of Alabama at Birmingham and Children’s of Alabama look to adapt the Patient Care Connect Program — which has proved successful in decreasing distress and improving quality of life for adults diagnosed with cancer — to children.

Using non-clinical navigators, the Family Navigation Program will provide support and services to children diagnosed with cancer and sickle cell disease, as well as to their families. The interdisciplinary team led by the UAB Department of Pediatrics was awarded a grant from the University of Alabama Health Services Foundation to create the Family Care Connect Program, an adaption of the PCCP, and test its effectiveness.

“Families face extreme amounts of stress when they learn their child has been diagnosed with a tumor,” said Avi Madan-Swain, Ph.D., principle investigator and professor in the UAB Division of Pediatric Hematology-Oncology. “By allowing these families access to the Family Care Connect Program, we hope to improve quality of life for the child, decrease stress/distress for the parent/primary caregiver, and increase satisfaction with the health care team.”

Leveraging insights from Anthony Hood, Ph.D., associate professor in the UAB Collat School of Business, the team will support collaborators to develop a sustainable business model for adapting the program in the future. “By collaborating with the Collat School of Business, we expect to show that the program will be cost-neutral, making it an attractive option for other pediatric chronic illness populations,” Madan-Swain said.

The interdisciplinary team will work collaboratively to develop and test the effectiveness of the Family Care Connect Program. The team includes Kimberly Whelan, M.D., interim director of the UAB Division of Pediatric Hematology-Oncology; Jamie Aye, M.D., fellow at UAB; Jeffrey Lebensburger, O.D., professor of pediatrics; Brandon Rocque, M.D., assistant professor in the UAB Department of Neurosurgery and grant co-principal investigator; Betsy Hopson, program coordinator for UAB’s Spina Bifida Program; Beth Clark, director of Care Coordination at Children's of Alabama; Katy McMullen, hematology-oncology social worker at Children's of Alabama; Lori Moler, vice president of Customer Service at Children's of Alabama Amado Santos, director of Patient Relations at Children's of Alabama; Barbara Lovvorn, Critical Care Nursing director; Jennifer Deneke, director of Family Services; Terri Salter, administrative director of the UAB Comprehensive Cancer Center; and Sharon Likos, parent educator at Children's of Alabama.

Written by Alicia Rohan