"You sure feel like you're alone, kind of flailing away out there": Family caregiver perspectives of caring for an individual with glioblastoma multiforme.

in Palliative & supportive care by Christy Muasher-Kerwin, Abby Baumbach, Yujun Liu, M Courtney Hughes

TLDR

  • This study explored the experiences of family caregivers of glioblastoma multiforme patients, highlighting the emotional and practical challenges they face and identifying areas for improvement in caregiver support.

Abstract

Glioblastoma multiforme (GBM) is the most common and aggressive form of brain cancer. Family caregivers of individuals with GBM must navigate a wide range of their care recipients' physical, cognitive, and psychosocial deficits to provide effective care, which is both mentally and physically demanding. This study aimed to investigate the perspectives of family caregivers of GBM patients about the barriers and challenges they encounter when providing care to their care recipients. Nineteen current and former family caregivers for individuals with GBM participated in semi-structured interviews from October 2023 through January 2024. We conducted interviews virtually and used applied thematic analysis to code transcripts to determine themes among participant responses. Three themes emerged from the interview analysis: (1) overwhelming caregiver burden, (2) difficulties coping with the caregiver role, and (3) gaps in caregiver support. These themes demonstrated a significant physical and mental toll on caregivers and a lack of time for engaging in coping strategies. The family caregivers described a lack of resources, minimal education, and limited time with their medical providers left them feeling ill-prepared for their role. Most family caregivers indicated their care recipients did not use rehabilitation services and the family caregivers expressed confusion about hospice and palliative care. Family caregivers for individuals with GBM desire more straightforward and proactive information and education about their care recipients from their medical providers. There is an opportunity for more utilization of hospice, palliative, and rehabilitation services to provide necessary training to GBM patients and their caregivers.

Overview

  • The study explored the perspectives of family caregivers of glioblastoma multiforme (GBM) patients on the barriers and challenges they face when providing care.
  • The study involved 19 current and former family caregivers who participated in semi-structured virtual interviews from October 2023 to January 2024.
  • The primary objective was to investigate the themes that emerged from the caregiver's experiences and identify areas for improvement in caregiver support and education.

Comparative Analysis & Findings

  • Three themes emerged from the interview analysis: overwhelming caregiver burden, difficulties coping with the caregiver role, and gaps in caregiver support.
  • These themes highlighted the significant physical and mental toll on caregivers and the need for more coping strategies.
  • Family caregivers reported a lack of resources, minimal education, and limited time with medical providers, leading to feelings of ill-preparation for their role.

Implications and Future Directions

  • There is a need for more straightforward and proactive information and education about care recipients from medical providers.
  • Increased utilization of hospice, palliative, and rehabilitation services could provide necessary training to GBM patients and caregivers.
  • Future studies could investigate the effectiveness of targeted support and education programs for family caregivers of GBM patients.
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