The Experience of Caregiving for Adults with Benign Brain Tumors: An Integrative Review

Abstract

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 disease and the foreboding possibility of recurrence. In this integrative review, we examined the caregiving experience across the spectrum of the aBBT population. We searched OVID, CINAHL, and PubMed databases from 2000 to 2022. We included studies primarily focused on caregivers of aBBT and written in English. Among 594 papers identified on initial review, we included a final list of 7 papers. Among these 7 papers, five 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. 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.