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Neurooncol Pract. 2016 Dec;3(4):232-244. doi: 10.1093/nop/npv060. Epub 2015 Dec 08.

Existential distress among caregivers of patients with brain tumors: a review of the literature.

Neuro-oncology practice

Allison J Applebaum, Maria Kryza-Lacombe, Justin Buthorn, Antonio DeRosa, Geoff Corner, Eli L Diamond

Affiliations

  1. Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.).

PMID: 31385976 PMCID: PMC6657396 DOI: 10.1093/nop/npv060

Abstract

BACKGROUND: Attention to existential needs is a component of comprehensive oncologic care, and understanding these needs among informal caregivers of patients with brain tumors is necessary to provide them with comprehensive psychosocial care. The purpose of this systematic review was to synthesize the literature on existential distress experienced by these informal caregivers to inform the development of psychotherapeutic interventions for this population.

METHODS: A systematic review was conducted using electronic medical databases. Studies that examined any element of existential distress among informal caregivers of patients with brain tumors were included. A final sample of 35 articles was reviewed.

RESULTS: Six existential themes emerged: identity; isolation; responsibility and guilt; death anxiety; deriving meaning and personal growth; and spirituality and religion. The unique existential experience of parenting a patient with a brain tumor also emerged. Existential distress in all areas was identified as experienced early in the cancer trajectory and as a critical, unmet need.

CONCLUSIONS: Existential distress is well documented among informal caregivers of patients with brain tumors and is a significant driving force of burden. Awareness and acknowledgement of this distress, as well as interventions to ameliorate this suffering, are needed. More candid communication between health care providers and caregivers about brain tumor prognosis and caregivers' existential distress may improve their psychosocial outcomes.

Keywords: brain tumors; burden; existential distress; informal caregivers; palliative care

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