Development of a Measure of Social Connectedness for Survivors of Pediatric Brain Tumors

Dr. Matthew Hocking, Ph.D. – The Children's Hospital of Philadelphia, Philadelphia, PA

Children treated for a brain tumor have significant problems with social connectedness that begin early in survivorship, persist through adulthood, and cause psychological and medical morbidities. Despite the significance of this issue, these youth are not routinely identified during clinical care due to a lack of validated measures evaluating social connectedness in this population. The constellation of social difficulties and factors contributing to them are unique to this population, increasing the need for a population-specific measure. Such a measure could be integrated into routine clinical care to identify those with social difficulties at an earlier stage to facilitate services to promote social connectedness. The objectives of this proposal are to develop and validate a measure of social connectedness difficulties in pediatric brain tumor survivors. An Advisory Board, consisting of pediatric neurooncology clinicians, experts in social challenges in other populations, and parents of pediatric brain tumor survivors will offer feedback at each phase. In Phase 1, we will develop an item bank for the measure. In Phase 2, we will evaluate the psychometric properties and factor structure of the measure in a sample of survivors recruited from the Children's Hospital of Philadelphia. In Phase 3, we will refine the measure based on Phase 2 data and Advisory Board feedback. This work will establish a measure specific to survivors and suitable for clinical use.