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Clinical Investigations |
Clinical Informatics Program, Department of Public Health Sciences, University of Virginia School of Medicine, Charlottesville, VA (J.R.S.); Instructional Technology Program, Department of Leadership, Foundations, and Policy, Curry School of Education, University of Virginia, Charlottesville, VA (M.B.K.); and Departments of Neurosurgery and Public Health Sciences, Penn State Cancer Institute, Pennsylvania State University College of Medicine, Hershey, PA (E.F.); USA
Address correspondence to Jane R. Schubart, Division of Population Sciences and Cancer Prevention, Penn State Cancer Institute, Penn State Milton S. Hershey Medical Center, 500 University Dr., Hershey, PA 17033, USA (jschubart{at}hmc.psu.edu).
The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding 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 trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. 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 caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.
Key Words: brain tumor information needs • family caregivers • health communication • quality of life
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