The University of Southampton
University of Southampton Institutional Repository

"Such a different type of tiredness": people with brain tumour, their caregivers', and healthcare professionals' qualitative perceptions of cancer-related fatigue

"Such a different type of tiredness": people with brain tumour, their caregivers', and healthcare professionals' qualitative perceptions of cancer-related fatigue
"Such a different type of tiredness": people with brain tumour, their caregivers', and healthcare professionals' qualitative perceptions of cancer-related fatigue
Purpose cancer-related fatigue (CRF) is one of the most common symptoms reported by people with primary brain tumour (BT). Previous research predominantly examined CRF using quantitative assessments, failing to capture the rich insight garnered from exploring individuals’ lived experiences. We addressed this gap by qualitatively exploring people with BTs’ experiences of CRF.

Methods semi-structured interviews were conducted with people with BT, their caregivers, and healthcare professionals (HCPs) who care for them. Interviews explored the experience, impact, and management of CRF, including types of support provided by HCPs. Data were analysed using reflexive thematic analysis.

Results forty participants were interviewed (24 people with BT, 5 caregivers, 11 HCPs). Qualitative analysis identified four themes: pervasiveness of CRF; impacts of CRF; advice and support; and self-management strategies. CRF was described as an almost universal symptom with physical, emotional, and cognitive aspects and profound psychosocial and functional impacts. HCPs reported assessing fatigue and providing management support. Yet, people with BT and caregivers reported CRF assessment and support were rarely received. Consequently, people with BT developed their own management strategies. All participants identified a lack of CRF information resources and interventions specific to people with BT.

Conclusion our findings provide rich insight into the pervasive, debilitating impact of CRF in people with BT and highlight the lack of BT-specific CRF support and information available.

Implications for cancer survivors: there is a critical need for evidence-based fatigue interventions and information resources tailored to the needs of people with BT.
Brain cancer, Cancer-related fatigue, Caregiver, Healthcare professional, Primary brain tumour, Qualitative research
1932-2259
Campbell, R.
f782201d-edaa-43d9-a4f8-d0c352546705
Shaw, J.M.
464ca5d8-0ada-4ece-ad3a-f4821b5faabe
Carlick, T.
2e37bdee-44d9-48b1-a716-30f026513602
Banks, H.
d12cd4e3-daee-4371-b14d-fe68085f5cea
Farris, M.M.
bad67cb2-9e75-4562-a414-330ff20ad38d
Jeon, M.S.
7e82e0ac-7613-4d03-9a0c-32e2ee046abc
Legge, D.M.
0f1ceeed-4263-49e3-b3fe-0a1676288563
Foster, C.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Leonard, R.
cfd0b2ef-641c-4e8e-925f-f1bec3ed16e0
Chan, R.J.
33f22bba-4bde-48a2-8c7d-ab88d9c96929
Agar, M.R.
befa45ce-8d79-4a17-a697-645cd37976fb
Miller, A.
c203442e-847e-4426-9b13-84798bcee24d
Dhillon, H.
06a65018-2e9c-4650-9afe-39fc6f112b10
for the BRAINS Investigator Group
Campbell, R.
f782201d-edaa-43d9-a4f8-d0c352546705
Shaw, J.M.
464ca5d8-0ada-4ece-ad3a-f4821b5faabe
Carlick, T.
2e37bdee-44d9-48b1-a716-30f026513602
Banks, H.
d12cd4e3-daee-4371-b14d-fe68085f5cea
Farris, M.M.
bad67cb2-9e75-4562-a414-330ff20ad38d
Jeon, M.S.
7e82e0ac-7613-4d03-9a0c-32e2ee046abc
Legge, D.M.
0f1ceeed-4263-49e3-b3fe-0a1676288563
Foster, C.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Leonard, R.
cfd0b2ef-641c-4e8e-925f-f1bec3ed16e0
Chan, R.J.
33f22bba-4bde-48a2-8c7d-ab88d9c96929
Agar, M.R.
befa45ce-8d79-4a17-a697-645cd37976fb
Miller, A.
c203442e-847e-4426-9b13-84798bcee24d
Dhillon, H.
06a65018-2e9c-4650-9afe-39fc6f112b10

for the BRAINS Investigator Group (2024) "Such a different type of tiredness": people with brain tumour, their caregivers', and healthcare professionals' qualitative perceptions of cancer-related fatigue. Journal of Cancer Survivorship. (doi:10.1007/s11764-024-01691-3).

Record type: Article

Abstract

Purpose cancer-related fatigue (CRF) is one of the most common symptoms reported by people with primary brain tumour (BT). Previous research predominantly examined CRF using quantitative assessments, failing to capture the rich insight garnered from exploring individuals’ lived experiences. We addressed this gap by qualitatively exploring people with BTs’ experiences of CRF.

Methods semi-structured interviews were conducted with people with BT, their caregivers, and healthcare professionals (HCPs) who care for them. Interviews explored the experience, impact, and management of CRF, including types of support provided by HCPs. Data were analysed using reflexive thematic analysis.

Results forty participants were interviewed (24 people with BT, 5 caregivers, 11 HCPs). Qualitative analysis identified four themes: pervasiveness of CRF; impacts of CRF; advice and support; and self-management strategies. CRF was described as an almost universal symptom with physical, emotional, and cognitive aspects and profound psychosocial and functional impacts. HCPs reported assessing fatigue and providing management support. Yet, people with BT and caregivers reported CRF assessment and support were rarely received. Consequently, people with BT developed their own management strategies. All participants identified a lack of CRF information resources and interventions specific to people with BT.

Conclusion our findings provide rich insight into the pervasive, debilitating impact of CRF in people with BT and highlight the lack of BT-specific CRF support and information available.

Implications for cancer survivors: there is a critical need for evidence-based fatigue interventions and information resources tailored to the needs of people with BT.

Text
s11764-024-01691-3 - Version of Record
Available under License Creative Commons Attribution.
Download (945kB)

More information

Accepted/In Press date: 1 October 2024
Published date: 15 October 2024
Keywords: Brain cancer, Cancer-related fatigue, Caregiver, Healthcare professional, Primary brain tumour, Qualitative research

Identifiers

Local EPrints ID: 495604
URI: http://eprints.soton.ac.uk/id/eprint/495604
ISSN: 1932-2259
PURE UUID: a4a609dd-26fa-4099-bc16-731f2dd43ac3
ORCID for C. Foster: ORCID iD orcid.org/0000-0002-4703-8378

Catalogue record

Date deposited: 19 Nov 2024 17:38
Last modified: 20 Nov 2024 02:39

Export record

Altmetrics

Contributors

Author: R. Campbell
Author: J.M. Shaw
Author: T. Carlick
Author: H. Banks
Author: M.M. Farris
Author: M.S. Jeon
Author: D.M. Legge
Author: C. Foster ORCID iD
Author: R. Leonard
Author: R.J. Chan
Author: M.R. Agar
Author: A. Miller
Author: H. Dhillon
Corporate Author: for the BRAINS Investigator Group

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×