Existential distress among caregivers of patients with brain tumors: A review of the literature Journal Article


Authors: Applebaum, A. J.; Kryza-Lacombe, M.; Buthorn, J.; DeRosa, A.; Corner, G.; Diamond, E. L.
Article Title: Existential distress among caregivers of patients with brain tumors: A review of the literature
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. © The Author(s) 2016.
Keywords: brain tumor; palliative care; quality of life; death; systematic review; distress syndrome; interview; caregiver; anxiety; religion; social isolation; psychotherapy; spiritual care; existential distress; brain tumors; caregiver burden; guilt; personality; responsibility; burden; identity; informal caregivers; human; priority journal; article
Journal Title: Neuro-Oncology Practice
Volume: 3
Issue: 4
ISSN: 2054-2577
Publisher: Oxford University Press  
Date Published: 2016-12-01
Start Page: 232
End Page: 244
Language: English
DOI: 10.1093/nop/npv060
PROVIDER: scopus
PMCID: PMC6657396
PUBMED: 31385976
DOI/URL:
Notes: Article -- Export Date: 1 June 2018 -- Source: Scopus
Altmetric
Citation Impact
BMJ Impact Analytics
MSK Authors
  1. Allison Joyce Applebaum
    191 Applebaum
  2. Eli Louis Diamond
    206 Diamond
  3. Antonio P DeRosa
    35 DeRosa
  4. Justin J Buthorn
    22 Buthorn
Related MSK Work