‘Keeping it real’

A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia

Bibliographic Data

ID19505846
AuthorsJulia Dray (0000-0003-4613-2634, Centre for Mental Health Research, National Centre for Epidemiology and Population Health The Australian National University Acton Australian Capital Territory Australia, corresponding author), V J Palmer (0000-0001-7212-932X, The ALIVE National Centre for Mental Health Research Translation The University of Melbourne, The Australian National University Melbourne Victoria Australia), Melanie Banfield (0000-0002-3024-1687, Centre for Mental Health Research, National Centre for Epidemiology and Population Health The Australian National University Acton Australian Capital Territory Australia), Michelle Banfield
Year2024
Volume27
Issue1
Pagese13934-e13934
Publication date2024-02-01
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.13934
PMID39102697
OpenAlexW4389894687
LanguageEN
Citations received6
References cited21

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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'. PATIENT OR PUBLIC CONTRIBUTION: 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

Lived experience · Mental health · Photo elicitation · Psychiatry · Qualitative research · Social science · Sociology · Thematic analysis · Health Policy Implementation Science · Mental Health and Patient Involvement · Participatory Visual Research Methods · Psychology · Social Psychology

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