Background: Caregiving for the adult benign brain tumor (aBBT) population is unique, as patients' extended period of survivorship poses significant challenges related to the long-term sequelae of the disease and the foreboding possibility of recurrence. In this integrative review, we examined the caregiving experience across the spectrum of the aBBT population.
Methods: We searched OVID, CINAHL, and PubMed databases from 2000 to 2022. We included studies primarily focused on caregivers of aBBT and written in English.
Results: Among 594 papers identified in the initial review, we included a final list of 7 papers. Among these 7 papers, 5 central themes emerged. First, we identified a theme surrounding psychosocial and emotional needs, which included the social isolation of caregiving. The second theme related to informational care needs, including what is considered to be the normal course of recovery after surgery. The third theme focused on access to services, including specialist neurosurgical care, and the fourth theme related to financial strain and the economic burdens associated with long-term follow-up. Lastly, we found a theme surrounding family role changes, which included the shift from spouse to caregiver.
Conclusions: In this review, we identified themes highlighting similarities to the high-grade glioma population. However, we uncovered distinct differences in terms of caregiver characteristics, length of survivorship, and the burden of caregiving over time. Collectively, our findings underscore the incomplete understanding of the caregiving experience across the spectrum of the aBBT population.
Keywords: benign brain tumor; brain neoplasm; caregiver; caregiver burden.
© The Author(s) 2024. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.