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

Published online by Cambridge University Press:  21 February 2025

Christy Muasher-Kerwin*
Affiliation:
Department of Allied Health and Communicative Disorders, Northern Illinois University, Dekalb, IL, USA
Abby Baumbach
Affiliation:
Senior Services Associates, Aurora, USA
Yujun Liu
Affiliation:
School of Family and Consumer Sciences, Northern Illinois University, Dekalb, IL, USA
M. Courtney Hughes
Affiliation:
School of Health Studies, Northern Illinois University, Dekalb, IL, USA
*
Corresponding author: Christy Muasher-Kerwin; Email: czeiss@niu.edu
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Abstract

Objectives

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.

Methods

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.

Results

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.

Significance of results

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.

Information

Type
Original Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press.
Figure 0

Table 1. Interview questions

Figure 1

Figure 1. Common types of changes experienced by patients with GBM as described by the participants.

Figure 2

Table 2. Participant characteristics

Figure 3

Table 3. Representative quotes from participants

Figure 4

Table 4. Action steps