CHOP Develops a Coping Kit for Pediatric Sickle Cell Disease Patients and Families

Recognizing the need to provide emotional support to pediatric sickle cell patients, psychologists at The Children’s Hospital of Philadelphia (CHOP) have developed an evidence-based coping tool for children with sickle cell disease and their families called The Cellie Coping Kit.

Meghan Marsac, PhD, a clinical psychologist at CHOP and co-inventor of The Cellie Coping Kit, led a research study to assess the acceptability and feasibility of an intervention using the Cellie Coping Kit with sickle cell disease patients. Dr. Marsac will present “Translating Evidence into Intervention: The Cellie Coping Kit For Sickle Cell Disease” at the Sickle Cell Disease Association of America’s Annual Conference held in Baltimore, October 1-4.

Sickle cell disease (SCD) creates significant physical and psychosocial strain on children and their families, underscoring the need for behavioral and emotional support. Children with SCD can benefit greatly from tools to help them manage the stressors related to sickle cell disease. To help address this need, researchers at CHOP adapted The Cellie Coping Kit (Cellie Kit) for cancer to meet the needs of children, ages 6 to 14, with sickle cell disease. The Cellie Coping Kit includes a stuffed toy named Cellie, coping cards, and a book for caregivers. Children use Cellie’s zippered mouth to store their coping cards where they can find over 100 tips for dealing with numerous disease-related stressors such as medical procedures, hospital visits and feelings of fear and uncertainty.

“Our goal in treating our patients is to provide the highest quality medical care possible, including providing emotional support throughout medical treatment,” said Dr. Marsac. “Families have shared some great stories about using the Cellie Kit to help them communicate about and deal with sickle cell disease challenges.”

After conducting studies from July 2010 to July 2011 on the Cellie Kit for cancer patients, and again in 2013-2014 on the sickle cell version, researchers found that The Cellie Coping Kits were a valuable resource for patients and their families. Most families reported learning new information and/or skills from using the Cellie Kit including new ideas for coping, normal reactions to their disease and its treatment, ways to initiate conversations, how to promote emotional expression, and how to help their children have fun. For more information about how to purchase a Cellie Coping Kit, visit www.celliecopingkit.org.