Caring for Dying Patient with Glioblastoma Multiforme: A Narrative Analysis of the Caring Experience of Family Caregiver

ABSTRACT

PURPOSE: The purpose of this narrative study was to understand how family caregivers interpreted themselves life during caring for dying patients with gliobalstoma, and how they integrated these experiences into their personal biographies. METHODS: Three family caregivers were recruited for the study. Data were collected through a series of audio-taped unstructured interviews and conversations with participants. The interviews and observation were conducted between October and November, 2011. Data were analyzed using psychosocial analytical methods that combined case based, in-depth staged analysis of narratives. RESULTS: The life experiences of the family caregivers with a dying family member were summarized as, in their own voices, 'the repetition of gliobalstoma', 'a smart patient', 'being obsessed with rehabilitation treatment', 'the frustration from nothing but just looking at the suffering of the patient', and 'a stubborn son'. CONCLUSION: Caregiving was characterised by various roles and life changes from the moment of diagnosis. Family caregivers of brain tumor reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.