Involving consumers with palliative care needs and their families in research: A case study

Virdun, C; Luckett, T; Gilmore, I; Brassil, M; Lilian, R; Lorenz, K; Phillips, J

Involving consumers with palliative care needs and their families in research: A case study

Virdun, C

Luckett, T

Gilmore, I Brassil, M Lilian, R Lorenz, K Phillips, J

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Publication Type:: Journal Article
Citation:: Collegian, 2019, 26 (6), pp. 645 - 650
Issue Date:: 2019-12-01

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Field	Value	Language
dc.contributor.author	Virdun, C https://orcid.org/0000-0003-3945-0749	en_US
dc.contributor.author	Luckett, T https://orcid.org/0000-0001-6121-5409	en_US
dc.contributor.author	Gilmore, I	en_US
dc.contributor.author	Brassil, M	en_US
dc.contributor.author	Lilian, R	en_US
dc.contributor.author	Lorenz, K	en_US
dc.contributor.author	Phillips, J https://orcid.org/0000-0002-3691-8230	en_US
dc.date.available	2020-12-01T18:06:44Z
dc.date.issued	2019-12-01	en_US
dc.identifier.citation	Collegian, 2019, 26 (6), pp. 645 - 650	en_US
dc.identifier.issn	1322-7696	en_US
dc.identifier.uri	http://hdl.handle.net/10453/137516
dc.description.abstract	© 2019 Australian College of Nursing Ltd Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population. Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting. Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se. Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants. Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided. Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives.	en_US
dc.relation.ispartof	Collegian	en_US
dc.relation.isbasedon	10.1016/j.colegn.2019.08.002	en_US
dc.rights	info:eu-repo/semantics/openAccess
dc.subject.classification	Nursing	en_US
dc.title	Involving consumers with palliative care needs and their families in research: A case study	en_US
dc.type	Journal Article
utslib.citation.volume	6	en_US
utslib.citation.volume	26	en_US
utslib.for	1110 Nursing	en_US
pubs.embargo.period	Not known	en_US
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/IMPACCT
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Nursing
pubs.organisational-group	/University of Technology Sydney/Strength - CHSP - Health Services and Practice
utslib.copyright.status	open_access	*
pubs.issue	6	en_US
pubs.publication-status	Published	en_US
pubs.volume	26	en_US

Abstract:

© 2019 Australian College of Nursing Ltd Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population. Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting. Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se. Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants. Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided. Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives.

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http://hdl.handle.net/10453/137516