‘Keeping it real’: A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia

Dray, J; Palmer, VJ; Banfield, M

‘Keeping it real’: A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia

Dray, J

Palmer, VJ Banfield, M

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Publisher:: Wiley
Publication Type:: Journal Article
Citation:: Health Expectations, 2024, 27, (1), pp. e13934
Issue Date:: 2024-02

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Field	Value	Language
dc.contributor.author	Dray, J https://orcid.org/0000-0003-4613-2634
dc.contributor.author	Palmer, VJ
dc.contributor.author	Banfield, M
dc.date.accessioned	2024-04-24T09:25:43Z
dc.date.available	2024-04-24T09:25:43Z
dc.date.issued	2024-02
dc.identifier.citation	Health Expectations, 2024, 27, (1), pp. e13934
dc.identifier.issn	1369-6513
dc.identifier.issn	1369-7625
dc.identifier.uri	http://hdl.handle.net/10453/178323
dc.description.abstract	<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience.</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to ‘keeping it real’.</jats:p></jats:sec><jats:sec><jats:title>Patient or Public Contribution</jats:title><jats:p>People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.</jats:p></jats:sec>
dc.language	en
dc.publisher	Wiley
dc.relation.ispartof	Health Expectations
dc.relation.isbasedon	10.1111/hex.13934
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1110 Nursing, 1117 Public Health and Health Services, 1701 Psychology
dc.subject.classification	Public Health
dc.subject.classification	4203 Health services and systems
dc.subject.classification	4206 Public health
dc.title	‘Keeping it real’: A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia
dc.type	Journal Article
utslib.citation.volume	27
utslib.for	1110 Nursing
utslib.for	1117 Public Health and Health Services
utslib.for	1701 Psychology
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	2024-04-24T09:25:41Z
pubs.issue	1
pubs.publication-status	Published
pubs.volume	27
utslib.citation.issue	1

Abstract:

AbstractBackgroundHistorically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research.MethodsData for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken.ResultsParticipants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience.ConclusionLived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to ‘keeping it real’.Patient or Public ContributionPeople with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.

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http://hdl.handle.net/10453/178323