Presentation Description: This presentation was a conversation between a nurse researcher and the mother of a now 14 year old survivor of a medullablastoma who was diagnosed at age 8, and was suffering severe consequences of her diagnosis and treatment. The discussion focused on the impacts of multiple limitations that may result from successful therapy, highlighted the enormous burden of care faced by patients and families, and served as a springboard for a discussion of caregiver burnout.
Janet Deatrick, PhD, FAAN, RN
University of Pennsylvania School of Nursing, Philadelphia, PA
The Children’s Hospital of Philadelphia, Philadelphia, PA