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. 2023 Jun;37(6):834-843.
doi: 10.1177/02692163231152525. Epub 2023 Feb 3.

Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals

Florien W Boele  1   2 , Sean Butler  1 , Emma Nicklin  1 , Helen Bulbeck  3 , Lucy Pointon  4 , Susan C Short  1 , Louise Murray  1
Affiliations

Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals

Florien W Boele et al. Palliat Med. 2023 Jun.

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 treatmentwill not result in cure, building trusting relationships, maintaining a sense of control and being well-informed are identified as critical.

Keywords: Brain tumour; caregivers; communication; decision-making; glioblastoma; palliative care.

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Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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