Adjustment of caregivers of pediatric patients with brain tumors: a cross-sectional analysis.

OBJECTIVE The purpose of the study was to compare the psychological adjustment of caregivers of children with brain tumors who are on-treatment with caregivers of children who are off-treatment. METHODS Data were collected from 90 participants: 47 (52.2%) caregivers of children undergoing active treatment (on-treatment) and 43 (47.8%) caregivers of children off-treatment on measures of global psychological distress and illness and caregiving related distress. RESULTS Results revealed that the two groups differed significantly in their reported symptoms of general psychological distress, with the off-treatment caregivers reporting significantly lower levels of general distress. However, off-treatment caregivers continued to experience elevated levels of uncertainty and caregiving burden related to their child's illness. CONCLUSIONS There is significant evidence suggesting that the burden of caring for a child with a brain tumor is ongoing, continuing well into the off-treatment period. These results also suggest that the psychosocial functioning of these caregivers is best assessed using measures designed specifically to evaluate illness-related psychosocial functioning (e.g. the Parent Experience of Child Illness, Impact on Family Scale).