Lived experience researchers partnering with consumers and carers to improve mental health research: Reflections from an Australian initiative
Open accessAbstract
Consumer and carer involvement in mental health research is a growing and developing field. Whilst there has been policy and in‐principle support for such involvement from governments around the world, lived experience researchers conducting academic research in partnership with other consumers and carers remains uncommon. ACACIA : The Australian Capital Territory Consumer and Carer Mental Health Research Unit is based at The Australian National University and employs academic researchers with lived experience to undertake research directly relevant to the needs of mental health consumers and carers with the aim of influencing policy and practice. In this study, we share our experience of developing and conducting research within ACACIA to provide a model for meaningfully engaging mental health consumers and carers throughout the research process.
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Two lived experience researchers who live with bipolar disorder reviewed the Round 1 statements (~50% each) for bias, language, and appropriateness.
“two ‘lived experience researchers’ [53] who live with BD and are employed in academic research in mood disorders were involved in the study design and reviewed the statements from Round 1 (~50% each).”
From Essential Information About Chronobiology and Chronotherapy for the Optimal Care of People With Bipolar Disorders: An Expert Consensus (2026) · cites this paper as [53]
The two people with lived experience are lived experience researchers who have specialised knowledge and expertise in research on mood disorders and personal lived experience, and this coupling is a major strength of their involvement.
“We emphasise that these individuals are lived experience researchers [53] who have specialised knowledge and expertise in the typically disconnected domains of research on mood disorders and personal lived experience of a mood disorder; this coupling is a major strength of their involvement in this study.”
From Essential Information About Chronobiology and Chronotherapy for the Optimal Care of People With Bipolar Disorders: An Expert Consensus (2026) · cites this paper as [53]
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Flagged first, then by citations
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Cited by
Sorted by citations
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“In an effort to reduce use of stigmatising language, two ‘lived experience researchers’ [53] who live with BD and are employed in academic research in mood disorders were involved in the study design and reviewed the statements from Round 1 (~50% each).”
- Authors
- Banfield, M., Randall, R., O'Brien, M., Hope, S., Gulliver, A., Forbes, O., Morse, A. R., & Griffiths, K.
- Affiliations
- Australian National University (AU)
- Corresponding author
- Banfield, Michelle
- ORCID
- Venue
- International Journal of Mental Health Nursing
- Publisher
- Wiley
- Published
- 2018-05-30
- Volume
- 27
- Issue
- 4
- Pages
- 1219-1229
- ISSN
- 1445-8330 (ISSN-L)
- 1447-0349
- OpenAlex
- W2806821122
- Cited by
- 96
- References
- 17
- Citations by year
- 2026: 14 · 2025: 16 · 2024: 11 · 2023: 18 · 2022: 5 · 2021: 9 · 2020: 15 · 2019: 5 · 2018: 2 · 2014: 1
- FWCI
- 11.84
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- International Journal of Mental Health Nursing (publishedVersion)
- PubMed (publishedVersion)
- ANU Open Research (Australian National University) (submittedVersion)
- Funders
- ACT Health (2013.21920.590, 2015.27504.340)
- Australian Research Council (DE150100637)
- National Health and Medical Research Council (1059620)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- lived experience researchers, mental health research, research collaboration, mental health service users, caregivers, research engagement
- MeSH terms
- Mental Disorders, Community Participation, Health Services Needs and Demand, Health Services Research, Humans, Research Personnel, Australian Capital Territory, Advisory Committees, Quality Improvement
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