Neuro-oNcology Neuro-oNcology

The rapid onset and progression of a brain tumor, cog-nitive and behavioral changes, and uncertainty sur-rounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness tra-jectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permit-ted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving signifi-cant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demand-ing. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because Caring for the brain tumor patient: Family caregiver burden and unmet need