Childhood Brain Tumors: Parental Concerns and Stressors by Phase of Illness

Abstract

The objective of this study is to identify common problems and helpful resources important to parents of children with brain tumors by illness phase and to determine associations with stress. Parents with a child diagnosed within the past 10 years were surveyed regarding healthcare provider interactions, medical information/education, health care utilization and psychosocial concerns. Survey items were rated as problems or helpful, and for importance at each phase of illness. Stress was recorded from 0 to 10 for each phase; associations with demographic characteristics and items were tested statistically. A total of 139 parents from 87 families responded, with 45 mother-father pairs. Half reported unmet informational needs as most important during diagnosis (etiology), recurrence (complementary therapy), end of life (dying process), and remission (long-term effects). Mothers experienced greater stress than fathers during adjuvant treatment (p = .009). Stress increased (p < .05) during diagnosis and hospitalization/surgery with being married, at hospital discharge because of changes in child’s personality/moods, during adjuvant treatment with unmet informational needs regarding stopping treatment, during recurrence regarding employment concerns, and during remission with unmet informational needs regarding life-time expectations. Stressors changed across phases of illness. Married respondents appeared at increased risk for stress. Further work is needed to tailor and evaluate interventions to decrease stress during illness phases.