Childhood brain tumors: children's and siblings' concerns regarding the diagnosis and phase of illness

Abstract

Our objective was to identify commonly reported problems and helpful resources important to children with brain or spinal cord tumors and siblings during phases of illness. Affected children and siblings from 40 families responded to a regional survey. Items encompassed four general content areas: health care provider interactions, medical information/education, health care utilization, and psychosocial. Children rated individual items as helpful, a problem, and for importance; relative frequencies were derived. One-third or more affected children reported important problems: hospitalization/surgery--help with schoolwork; hospital discharge--help with changes in physical activity, appearance, moods, special needs at school; adjuvant treatment--Internet information, help with moods; and remission--socializing. One-third or more siblings reported important problems: diagnosis--information about etiology and prognosis, manner of physician and parents in providing information; hospitalization/surgery--information about prognosis, help with schoolwork; hospital discharge--help with schoolwork; adjuvant treatment--help with changes in sister or brother's appearance, physical activity, moods, and information about the treatment; end of life--treatment of sister's or brother's pain, information about dying, family harmony, support from friends, help with schoolwork, and preparation for the death. Consideration of problems and helpful resources will provide the framework for developing and evaluating intervention strategies at each phase of illness.