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

被引:18
作者
Boele, Florien W. [1 ,2 ]
Butler, Sean [1 ]
Nicklin, Emma [1 ,5 ]
Bulbeck, Helen [3 ]
Pointon, Lucy [4 ]
Short, Susan C. [1 ]
Murray, Louise [1 ]
机构
[1] Univ Leeds, St Jamess Hosp, Leeds Inst Med Res, Leeds, England
[2] Univ Leeds, Leeds Inst Hlth Sci, Leeds, England
[3] Brainstrust Brain Canc People, Leeds, England
[4] Univ Leeds, Leeds Inst Med Res, Sch Psychol, Leeds, England
[5] St James Hosp, Leeds Inst Med Res, Beckett St, Leeds LS9 7TF, England
关键词
Brain tumour; glioblastoma; caregivers; communication; decision-making; palliative care; HIGH-GRADE GLIOMA; PALLIATIVE CARE; CANCER-PATIENTS; DECISION-MAKING; OF-LIFE; INFORMATION; TRUST; TEMOZOLOMIDE; PROVISION; OUTCOMES;
D O I
10.1177/02692163231152525
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
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.
引用
收藏
页码:834 / 843
页数:10
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