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

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...

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Autores principales: Boele, Florien W, Butler, Sean, Nicklin, Emma, Bulbeck, Helen, Pointon, Lucy, Short, Susan C, Murray, Louise
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10227096/
https://www.ncbi.nlm.nih.gov/pubmed/36734532
http://dx.doi.org/10.1177/02692163231152525
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author Boele, Florien W
Butler, Sean
Nicklin, Emma
Bulbeck, Helen
Pointon, Lucy
Short, Susan C
Murray, Louise
author_facet Boele, Florien W
Butler, Sean
Nicklin, Emma
Bulbeck, Helen
Pointon, Lucy
Short, Susan C
Murray, Louise
author_sort Boele, Florien W
collection PubMed
description 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.
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spelling pubmed-102270962023-05-31 Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals Boele, Florien W Butler, Sean Nicklin, Emma Bulbeck, Helen Pointon, Lucy Short, Susan C Murray, Louise Palliat Med Original Articles 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. SAGE Publications 2023-02-03 2023-06 /pmc/articles/PMC10227096/ /pubmed/36734532 http://dx.doi.org/10.1177/02692163231152525 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Articles
Boele, Florien W
Butler, Sean
Nicklin, Emma
Bulbeck, Helen
Pointon, Lucy
Short, Susan C
Murray, Louise
Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals
title Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals
title_full Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals
title_fullStr Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals
title_full_unstemmed Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals
title_short Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals
title_sort communication in the context of glioblastoma treatment: a qualitative study of what matters most to patients, caregivers and health care professionals
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10227096/
https://www.ncbi.nlm.nih.gov/pubmed/36734532
http://dx.doi.org/10.1177/02692163231152525
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