Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.

Virdun, C; Luckett, T; Lorenz, K; Davidson, P; Phillips, J

Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.

Virdun, C

Luckett, T

Lorenz, K Davidson, P

Phillips, J

Permalink

Publisher:: SAGE Publications
Publication Type:: Journal Article
Citation:: Palliative Medicine, 2022, 36, (7), pp. 1129-1139
Issue Date:: 2022-07

Open Access

Copyright Clearance Process

Recently Added
In Progress
Open Access

This item is open access.

Adobe PDF

Download Accepted versionAdobe PDF (493.83 kB)

View on publisher's site

View statistics

Full metadata record

Field	Value	Language
dc.contributor.author	Virdun, C https://orcid.org/0000-0003-3945-0749
dc.contributor.author	Luckett, T https://orcid.org/0000-0001-6121-5409
dc.contributor.author	Lorenz, K
dc.contributor.author	Davidson, P https://orcid.org/0000-0003-2050-1534
dc.contributor.author	Phillips, J https://orcid.org/0000-0002-3691-8230
dc.date.accessioned	2022-10-12T03:40:19Z
dc.date.available	2022-10-12T03:40:19Z
dc.date.issued	2022-07
dc.identifier.citation	Palliative Medicine, 2022, 36, (7), pp. 1129-1139
dc.identifier.issn	0269-2163
dc.identifier.issn	1477-030X
dc.identifier.uri	http://hdl.handle.net/10453/162514
dc.description.abstract	BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE Publications
dc.relation.ispartof	Palliative Medicine
dc.relation.isbasedon	10.1177/02692163221100108
dc.rights	info:eu-repo/semantics/openAccess
dc.rights	Virdun C, Luckett T, Lorenz K, Davidson P, Phillips J. Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study. Palliative Medicine. 2022;36(7):1129-1139. Copyright ©2022 DOI:10.1177/02692163221100108
dc.subject	1117 Public Health and Health Services, 1199 Other Medical and Health Sciences
dc.subject.classification	Gerontology
dc.subject.mesh	Adult
dc.subject.mesh	Australia
dc.subject.mesh	Family
dc.subject.mesh	Hospitals
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Adult
dc.subject.mesh	Australia
dc.subject.mesh	Family
dc.subject.mesh	Hospitals
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Family
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Adult
dc.subject.mesh	Hospitals
dc.subject.mesh	Australia
dc.title	Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.
dc.type	Journal Article
utslib.citation.volume	36
utslib.location.activity	England
utslib.for	1117 Public Health and Health Services
utslib.for	1199 Other Medical and Health Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHSP - Health Services and Practice
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
pubs.organisational-group	/University of Technology Sydney/Centre for Health Technologies (CHT)
utslib.copyright.status	open_access	*
pubs.consider-herdc	false
dc.date.updated	2022-10-12T03:40:17Z
pubs.issue	7
pubs.publication-status	Published
pubs.volume	36
utslib.citation.issue	7

Abstract:

BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/162514