Jane R. Schubart|Mable B. Kinzie|Elana Farace
Caring for the brain tumor patient: Family caregiver burden and unmet needs
University of Virginia|Pennsylvania State University|University of Virginia|Pennsylvania State University|University of Virginia|Pennsylvania State University
rapid onset progression brain tumor cognitive behavioral changes uncertainty surrounding prognosis issues well known health practitioners neurooncology studied specific challenges family caregivers face caring patients experiencing significant neurocognitive neurobehavioral disorders associated brain tumors selected 25 family caregivers adult brain tumor patients represent brain tumor illness trajectory crisis chronic terminal phases interviews documented caregiving tasks decisionmaking information support needs themes permitted emerge data qualitative analysis found family caregivers study provided extraordinary uncompensated care involving significant amounts time energy months years requiring performance tasks often physically emotionally socially financially demanding constantly challenged solve problems make decisions care needs changed yet felt untrained unprepared struggled adjust new roles responsibilities focus patient needs neglected caregiver information needs emergent always known time clinic visit physicians frequently unable address caregiver questions situation compounded time constraints cultural barriers provide specific recommendations 1 improving delivery information 2 enhancing communication among patients families health care providers 3 providing psychosocial support family caregivers