Boele, FW orcid.org/0000-0003-0409-7949, Butler, S, Nicklin, E orcid.org/0000-0002-6683-8098 et al. (4 more authors) (2023) Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals. Palliative Medicine. ISSN 0269-2163
Abstract
Background:
Patients with glioblastoma have a poor prognosis and treatment is palliative in nature from diagnosis. It is therefore critical that the benefits and burdens of treatments are clearly discussed with patients and caregivers.
Aim:
To explore experiences and preferences around glioblastoma treatment communication in patients, family caregivers and healthcare professionals.
Design:
Qualitative design. A thematic analysis of semi-structured interviews.
Setting/participants:
A total of 15 adult patients with glioblastoma, 13 caregivers and 5 healthcare professionals were recruited from Leeds Teaching Hospitals NHS Trust.
Results:
Four themes were identified: (1) Communication practice and preferences. Risks and side-effects of anti-tumour treatments were explained clearly, with information layered and repeated. Treatment was often understood to be ‘the only option’. Understanding the impact of side-effects could be enhanced, alongside information about support services. (2) What matters most. Patients/caregivers valued being well-supported by a trusted treatment team, feeling involved, having control and quality of life. Healthcare professionals similarly highlighted trust, maintaining independence and emotional support as key. (3) Decision-making. With limited treatment options, trust and control are crucial in decision-making. Patients ultimately prefer to follow healthcare professional advice but want to be involved, consider alternatives and voice what matters to them. (4) Impact of COVID-19. During the pandemic, greater efforts to maintain good communication were necessary. Negative impacts of COVID-19 were limited, caregivers appeared most disadvantaged by pandemic-related restrictions.
Conclusions:
In glioblastoma treatment communication, where prognosis is poor and treatment will not result in cure, building trusting relationships, maintaining a sense of control and being well-informed are identified as critical.
Metadata
Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2023. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) | ||||||||
Keywords: | Brain tumour; caregivers; communication; decision-making; glioblastoma; palliative care | ||||||||
Dates: |
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Institution: | The University of Leeds | ||||||||
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Psychology (Leeds) | ||||||||
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Depositing User: | Symplectic Publications | ||||||||
Date Deposited: | 14 Feb 2023 15:32 | ||||||||
Last Modified: | 14 Feb 2023 15:32 | ||||||||
Status: | Published online | ||||||||
Publisher: | SAGE | ||||||||
Identification Number: | https://doi.org/10.1177/02692163231152525 | ||||||||
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