How Families Function After a Child’s Diagnosis with Cancer

An Interview with Dr. Melanie Bonner

Melanie Bonner, Ph.D.
Director of Pediatric Research for the Quality of Life Program
Duke University Medical Center

Dr. Melanie Bonner, the Director of Pediatric Research for the Quality of Life program at Duke University, began studying brain tumor patients in 1994.  Since that time, Dr. Bonner and her team have developed a number of studies with a focus on survivorship issues.  One such study titled “Development and Validation of the Parent Experience of Child Illness” was recently published in the Journal of Pediatric Psychology.

Using the 25-item self-report questionnaire called the “Parent Experience of Child Illness Scale” (PECI), 149 parents of brain tumor patients were assessed for guilt and worry, emotional resources, unresolved sorrow and anger, and long-term uncertainty.  The children of those parents surveyed ranged in age from 1-17 years of age.

 “Our initial study suggests that most parents and caregivers are doing well,” said Dr. Bonner.  “They have adjusted to the significant stressors that exist in their lives using a variety of adaptive behaviors, such as keeping a notebook to record their child’s medical history and tracking prescriptions.”

According to Dr. Bonner, the PECI was developed because the standard measures used by the medical community were not addressing the ongoing issues that parents of children with brain tumors face.  Prior to the PECI, only the clinical aspects of depression and other medical conditions were considered.  

“Parents are not reporting high levels of psychiatric problems,” said Dr. Bonner.  “But they are experiencing emotional difficulties.  By assessing these difficulties, we hope to develop the tools that parents and caregivers need to handle the stress of their child’s illness.”

Many parents report that talking to other parents is very helpful – whether in the waiting room at the hospital or in more structured environments like support groups.  Some find strength in actively participating in brain tumor events and fundraisers, such as the “Angels Among Us Walk” held at Duke every year. Others find help on the Internet in online support groups and through websites.  (For a list of more useful online sources, click here.)

At this time, the PECI is limited to patients undergoing treatment at Duke.  Plans are to extend this study to other cancer research institutions and communities throughout the country.

“Our plan is to develop the PECI measure over the next five years,” Dr. Bonner said.  “We need to move beyond parents to include siblings and others in the patient’s social world.”

(To view the PECI survey, click here.)

About Dr. Melanie Bonner
Dr. Bonner has worked with the Duke Pediatric Brain Tumor Program since 1994, and currently serves as the Director of Pediatric Research for the Quality of Life program. As part of this program, Dr. Bonner has developed a number of studies that are focused on survivorship issues. She has particular interest in the neurocognitive late effects of brain tumor treatments and in understanding the social struggles that patients face after treatment ends. Her commitment to pediatric neuro-oncology research is also reflected in her work as an associate member of the Children’s Oncology Group.

As a Pediatric Psychologist, Dr. Bonner is also actively involved in the clinical care of patients and their families on a daily basis. She evaluates the neuropsychological functioning of patients, completes school visits to assist with the integration of children back into the school environment, assists in developing appropriate education plans, leads support groups for adolescents, and endeavors to improve the well-being of the patients and their families. As such, Dr. Bonner has had the opportunity to have a firsthand look at the victories and the struggles patients with pediatric brain tumors encounter. While continually humbled by the resilience of these children and their families, she is keenly aware of the challenges they face. Therefore, research focused on maximizing the quality of life of these patients, a quality that they deserve, is a priority.