"It Is Kind of Invisible Work": Lived Experiences of Informal Caregivers of People with a Brain Tumor

Primary brain tumor presents symptoms related to both cancer and neurological condition. Due to unique characteristics and related care demands, neuro-oncology family caregivers experience different challenges compared to family members of other cancer survivors. The purpose of this study was to understand the informal caregivers' lived experiences of coping, support needs, and changes in relationships while caring for family member or friend with a brain tumor.

In-depth interviews were conducted with 10 informal caregivers of people diagnosed with a primary brain tumor. The mean age of participants was 45 years (range 19-68 years), and 90% of participants were female (n = 9). Time since diagnosis of the family member ranged from 1 month to 13 years (mean = 4 years). Interviews were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis.

Five interrelated themes were identified following the analysis: (1) Exhaustion and all-consuming role, (2) experiencing rupture and loss, (3) togetherness and isolation, (4) navigating healthcare and lack of support, and (5) anticipating grief. There was an overarching sense of loneliness, loss on multiple levels, and feeling invisible in their caregiving role.

Neuro-oncology caregiving was described as an extremely challenging and lonely experience. The current findings support calls for healthcare services redesign which would provide family-based cancer care.

Findings highlight the importance of involving informal caregivers of persons with a brain tumor in the treatment process and their important role be acknowledged.