Exploring Misconceptions of Palliative Care Among Patients With Hepatocellular Carcinoma: A Pilot Study.

Abasseri, M; Hoque, S; Caldwell, K; Sheahan, L; Kochovska, S; Agar, M; Zekry, A

Exploring Misconceptions of Palliative Care Among Patients With Hepatocellular Carcinoma: A Pilot Study.

Abasseri, M Hoque, S Caldwell, K Sheahan, L Kochovska, S Agar, M

Zekry, A

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Publisher:: SAGE PUBLICATIONS INC
Publication Type:: Journal Article
Citation:: Am J Hosp Palliat Care, 2024, pp. 10499091241268423
Issue Date:: 2024-08-19

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Field	Value	Language
dc.contributor.author	Abasseri, M
dc.contributor.author	Hoque, S
dc.contributor.author	Caldwell, K
dc.contributor.author	Sheahan, L
dc.contributor.author	Kochovska, S
dc.contributor.author	Agar, M https://orcid.org/0000-0002-6756-6119
dc.contributor.author	Zekry, A
dc.date.accessioned	2024-09-25T05:32:29Z
dc.date.available	2024-09-25T05:32:29Z
dc.date.issued	2024-08-19
dc.identifier.citation	Am J Hosp Palliat Care, 2024, pp. 10499091241268423
dc.identifier.issn	1049-9091
dc.identifier.issn	1938-2715
dc.identifier.uri	http://hdl.handle.net/10453/180978
dc.description.abstract	BACKGROUND: Hepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined. AIM: This pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm. DESIGN: Patients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed. RESULTS: Twenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'. CONCLUSION: There is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE PUBLICATIONS INC
dc.relation.ispartof	Am J Hosp Palliat Care
dc.relation.isbasedon	10.1177/10499091241268423
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1110 Nursing
dc.subject.classification	Gerontology
dc.subject.classification	4203 Health services and systems
dc.subject.classification	4205 Nursing
dc.title	Exploring Misconceptions of Palliative Care Among Patients With Hepatocellular Carcinoma: A Pilot Study.
dc.type	Journal Article
utslib.location.activity	United States
utslib.for	1110 Nursing
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Research Centres/IMPACCT
pubs.organisational-group	University of Technology Sydney/UTS Groups
pubs.organisational-group	University of Technology Sydney/UTS Groups/Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT)
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Research Centres
utslib.copyright.status	open_access	*
dc.rights.license	This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). To view a copy of this license, visit https://creativecommons.org/licenses/by/4.0/
dc.date.updated	2024-09-25T05:32:27Z
pubs.publication-status	Published online

Abstract:

BACKGROUND: Hepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined. AIM: This pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm. DESIGN: Patients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed. RESULTS: Twenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'. CONCLUSION: There is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.

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http://hdl.handle.net/10453/180978