Mothers and Fathers Perspectives: Family Management of Young Adult Survivors of Childhood Brain Tumors

While five-year survival rates for survivors of childhood brain tumors have slowly improved to 66% because of advances in care, brain tumor survivors report the lowest quality of life of all childhood cancer survivors. Treatment can affect cognitive and physical functioning in a variety of ways, including neurodevelopmental late effects (changes in overall I.Q., slower processing speed, decline in short-term memory, poor attention span and impaired organizational skills).  Physical late effects often require care by multiple specialists and may include endocrine dysfunction, neurological deficits, hearing impairment, and changes in physical appearance. They have lower rates of employment than do other cancer survivors and are less likely to marry and are more likely to divorce when they do marry. While they often have areas of strengths regarding family relationships, their other social relationships can be limited.  Unlike most parents who relinquish day to day responsibility for their young adults, parents of childhood brain tumor survivors often may still be caring for them.

Preliminary results of our current federally funded study concerning caregivers/mothers for young adult brain tumor survivors still at home with their parents demonstrated that knowing how the family manages is important to understanding how to potentially improve the quality of life of the survivor and family members.  This project is designed to go beyond mothers and also ask fathers about family management and quality of life.  We will gather data from 100 parents (50 mother-father dyads).  We will also use innovative internet based data collection methods so to make data collection more flexible for the parents.