| Abstract: |
Caregivers of persons with a primary malignant brain tumor (PwPMBT) are at particular risk for poor emotional and physical health as they navigate both oncologic and neurodegenerative challenges in patients. In this chapter, we explore the unique experience of caregiving in neuro-oncology, including navigating changes in family/roles and patients, navigating the medical system and healthcare communication, and navigating caregivers’ own emotional reactions and needs. We summarize what is known to date about the physical and emotional health, and financial, occupational, and social outcomes of caregivers of PwPMBT. Supportive services with evidence of improving various areas of caregivers’ well-being across the caregiving trajectory from a patient's diagnosis through bereavement are reviewed. We highlight the challenges of clinical service delivery for this unique group of caregivers, as well as gaps in—and future directions for—the state of the science of research with caregivers of PwPMBT. © 2024 Elsevier Inc. All rights reserved. |
