A human rights-based framework for qualitative dementia research.

Diaz-Gil, A; Brooke, J; Kozlowska, O; Jackson, D; Appleton, J; Pendlebury, S

A human rights-based framework for qualitative dementia research.

Diaz-Gil, A Brooke, J Kozlowska, O Jackson, D

Appleton, J Pendlebury, S

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Publisher:: SAGE Publications
Publication Type:: Journal Article
Citation:: Nurs Ethics, 2023, 30, (7-8), pp. 1138-1155
Issue Date:: 2023

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Field	Value	Language
dc.contributor.author	Diaz-Gil, A
dc.contributor.author	Brooke, J
dc.contributor.author	Kozlowska, O
dc.contributor.author	Jackson, D https://orcid.org/0000-0001-5252-5325
dc.contributor.author	Appleton, J
dc.contributor.author	Pendlebury, S
dc.date.accessioned	2024-03-17T20:52:29Z
dc.date.available	2024-03-17T20:52:29Z
dc.date.issued	2023
dc.identifier.citation	Nurs Ethics, 2023, 30, (7-8), pp. 1138-1155
dc.identifier.issn	0969-7330
dc.identifier.issn	1477-0989
dc.identifier.uri	http://hdl.handle.net/10453/176812
dc.description.abstract	BACKGROUND AND OBJECTIVES: People living with dementia have historically been excluded from qualitative research and their voices ignored due to the perception that a person with dementia is not able to express their opinions, preferences and feelings. Research institutions and organizations have contributed by adopting a paternalistic posture of overprotection. Furthermore, traditional research methods have proven to be exclusionary towards this group. The objective of this paper is to address the issue of inclusion of people with dementia in research and provide an evidence-based framework for dementia researchers based on the five principles of human rights: Participation, Accountability, Non-discrimination and equality, Empowerment and Legality (PANEL). DESIGN: This paper adapts the PANEL principles to the research context, and uses evidence from the literature to create a framework for qualitative research in people with dementia. This new framework aims to guide dementia researchers in designing studies around the needs of people with dementia, to improve involvement and participation, facilitate research development and maximize research outcomes. RESULTS: A checklist is presented with questions related to the five PANEL principles. These questions cover ethical, methodological and legal issues that researchers may need to consider while developing qualitative research for people with dementia. CONCLUSIONS: The proposed checklist offers a series of questions and considerations to facilitate the development of qualitative research in patients with dementia. It is inspired by current human rights work of recognized dementia researchers and organizations who have been directly involved in policy development. Future studies need to explore its utility in improving participation, facilitating ethics approvals and ensuring that outcomes are relevant to people with dementia.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE Publications
dc.relation.ispartof	Nurs Ethics
dc.relation.isbasedon	10.1177/09697330231161687
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1110 Nursing, 2201 Applied Ethics
dc.subject.classification	Applied Ethics
dc.subject.classification	4205 Nursing
dc.subject.classification	5001 Applied ethics
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Human Rights
dc.subject.mesh	Research Design
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Research Design
dc.subject.mesh	Human Rights
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Human Rights
dc.subject.mesh	Research Design
dc.subject.mesh	Qualitative Research
dc.title	A human rights-based framework for qualitative dementia research.
dc.type	Journal Article
utslib.citation.volume	30
utslib.location.activity	England
utslib.for	1110 Nursing
utslib.for	2201 Applied Ethics
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
utslib.copyright.status	open_access	*
dc.date.updated	2024-03-17T20:52:26Z
pubs.issue	7-8
pubs.publication-status	Published
pubs.volume	30
utslib.citation.issue	7-8

Abstract:

BACKGROUND AND OBJECTIVES: People living with dementia have historically been excluded from qualitative research and their voices ignored due to the perception that a person with dementia is not able to express their opinions, preferences and feelings. Research institutions and organizations have contributed by adopting a paternalistic posture of overprotection. Furthermore, traditional research methods have proven to be exclusionary towards this group. The objective of this paper is to address the issue of inclusion of people with dementia in research and provide an evidence-based framework for dementia researchers based on the five principles of human rights: Participation, Accountability, Non-discrimination and equality, Empowerment and Legality (PANEL). DESIGN: This paper adapts the PANEL principles to the research context, and uses evidence from the literature to create a framework for qualitative research in people with dementia. This new framework aims to guide dementia researchers in designing studies around the needs of people with dementia, to improve involvement and participation, facilitate research development and maximize research outcomes. RESULTS: A checklist is presented with questions related to the five PANEL principles. These questions cover ethical, methodological and legal issues that researchers may need to consider while developing qualitative research for people with dementia. CONCLUSIONS: The proposed checklist offers a series of questions and considerations to facilitate the development of qualitative research in patients with dementia. It is inspired by current human rights work of recognized dementia researchers and organizations who have been directly involved in policy development. Future studies need to explore its utility in improving participation, facilitating ethics approvals and ensuring that outcomes are relevant to people with dementia.

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http://hdl.handle.net/10453/176812