Skip to main content

Advertisement

Log in

Embedding a Recovery Orientation into Neuroscience Research: Involving People with a Lived Experience in Research Activity

  • Original Paper
  • Published:
Psychiatric Quarterly Aims and scope Submit manuscript

Abstract

This paper highlights the importance and value of involving people with a lived experience of mental ill health and recovery in neuroscience research activity. In this era of recovery oriented service delivery, involving people with the lived experience of mental illness in neuroscience research extends beyond their participation as “subjects”. The recovery paradigm reconceptualises people with the lived experience of mental ill health as experts by experience. To support this contribution, local policies and procedures, recovery-oriented training for neuroscience researchers, and dialogue about the practical applications of neuroscience research, are required.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Staley K, Kabir T and Szmukler G. Service users as collaborators in mental health research: less stick, more carrot. Psychological Medicine 43(6):1121–1125, 2013.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  2. Australian Government National Health Medical Research Council. Statement on consumer participation on health and medical research, 2002. http://www.nhmrc.gov.au/guidelines/publications/r22-r23-r33-r34. Accessed 12 Jan 2015.

  3. Two Can Associates. Developing training and support. Online resource. INVOLVE: Eastleigh, 2012. http://www.twocanassociates.co.uk/index.php. Accessed 12 Jan 2015.

  4. McPin Foundation. McPin Foundation: Transforming mental health research, 2013. http://mcpin.org/. Accessed 12 Jan 2015.

  5. Kleinman A. Rebalancing academic psychiatry: Why it needs to happen—and soon. The British Journal of Psychiatry 201(6):421–422, 2012.

    Article  PubMed  Google Scholar 

  6. Davidson L. Living outside mental illness: qualitative studies of recovery in schizophrenia. New York, New York University Press, 2003.

    Google Scholar 

  7. Sacks MH, Carpenter WT Jr., Strauss JS. Recovery from delusions. Three phases documented by patient’s interpretation of research procedures. Archives of General Psychiatry 30(1):117–120, 1974.

    Article  CAS  PubMed  Google Scholar 

  8. Gallagher S, Zahavi, D. The phenomenological mind: an introduction to philosophy of mind and cognitive science. 2nd ed. London, Routledge, 2012.

    Google Scholar 

  9. Woods A, Jones N, Bernini M, Callard F, Alderson-Day B, Badcock JC, et al. Interdisciplinary approaches to the phenomenology of auditory verbal hallucinations. Schizophrenia Bulletin 40(Suppl 4):S246–S254, 2014.

    Article  PubMed Central  PubMed  Google Scholar 

  10. Corlett PR, Cambridge V, Gardner JM, Piggot JS, Turner DC, Everitt JC, et al. Ketamine effects on memory reconsolidation favor a learning model of delusions. PLoS One 8(6):e65088, 2013.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  11. Corlett PR, Krystal JH, Taylor JR, Fletcher PC. Why do delusions persist? Frontiers in Human Neuroscience 3:12, 2009.

    Article  PubMed Central  PubMed  Google Scholar 

  12. Warner, R. Does the scientific evidence support the recovery model? The Psychiatric Bulletin 34:3–5, 2010. doi:10.1192/pb.bp.109.025643.

    Article  Google Scholar 

  13. Deegan P. Recovery as a journey of the heart. Psychiatric Rehabilitation Journal 19:91–97, 1996.

    Article  Google Scholar 

  14. Anthony WA. Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal 16:11–23, 1993.

    Article  Google Scholar 

  15. Slade M. Mental illness and wellbeing: The central importance of positive psychology and recovery approache. BioMed Central Health Services Research, 2010. doi:10.1186/1472-6963-10-26.

    Google Scholar 

  16. Rowe M, Kloos B, Chinman M, Davidson L, Cross, AB. Homelessness, mental illness and citizenship. Social Policy and Administration 35(1):14–31, 2001.

    Article  Google Scholar 

  17. Bland R, Darlington Y. The nature and sources of hope: Perspectives of family caregivers of people with serious mental illness. Perspectives in Psychiatric Care 38(2):61–68, 2002. doi:10.1111/j.1744-6163.2002.tb00658.x.

    Article  PubMed  Google Scholar 

  18. Bland R, Foster M. Families and mental illness: Contested perspectives and implications for practice and policy. Australian Social Work 65(4):517–534, 2012.

    Article  Google Scholar 

  19. Meehan TJ, King RJ, Beavis PH, Robinson, JD. Recovery-based practice: Do we know what we mean or mean what we know? Australian and New Zealand Journal of Psychiatry 42(3):177–182, 2008.

    Article  PubMed  Google Scholar 

  20. Oakley K, Malins G, Riste L, Allan J. Consumer participation in service evaluation and quality improvement: Key ingredients for a system to deliver national indicators. Australasian Psychiatry 19(6):493–497, 2011.

    Article  PubMed  Google Scholar 

  21. Center for Community-Engaged Research (CCER). Institute of clinical and translational sciences. Washington University in St Louis, 2015. http://icts.wustl.edu/icts-researchers/icts-cores/find-services/by-core-name/center-for-community-engaged-research. Accessed 17 Oct 2013.

  22. Staley K. An evaluation of service user involvement in studies adopted by the Mental Health Research Network. London, Mental Health Research Network. National Institute for Health Research (MHRN), 2012.

    Google Scholar 

  23. State Government of Victoria, Australia, Department of Health. Mental Illness Research Fund, 2014. http://www.health.vic.gov.au/mentalhealth/reform/mi-research-fund.htm. Accessed 2 June 2014.

  24. Senterfitt W. The Denver Principles: the Original Manifesto of the PWA Self-Empowerment Movement. Los Angeles, Being Alive, 1998.

    Google Scholar 

  25. Crimp D, Rolston A. AIDS demographics. Seattle, Bay Press, 1990.

    Google Scholar 

  26. Ellis KA, Bush AI, Darby D, De Fazio D, Foster J, Hudson P, Ames D. The Australian Imaging, Biomarkers and Lifestyle (AIBL) study of aging: Methodology and baseline characteristics of 1112 individuals recruited for a longitudinal study of Alzheimer’s disease. International Psychogeriatrics 21(04):672–687, 2009.

    Article  PubMed  Google Scholar 

  27. Ellis K, Walker S, Robertson J, Mucha L, Bobula J, Martins R, Masters C, Rowe C, Szoeke C, Ames, D. Dependence and resource utilization in MCI and Alzheimer’s patients participating in the AIBL study. Alzheimers and Dementia 7(4):S439–S440, 2011.

    Article  Google Scholar 

  28. Cantor-Graae E. The contribution of social factors to the development of schizophrenia: A review of recent findings. Canadian Journal of Psychiatry 52(5):277, 2007.

    PubMed  Google Scholar 

  29. Castle D. Rebalancing psychosocial and biological in mental health treatments. Australasian Psychiatry 22(5):427–428, 2014.

    Article  PubMed  Google Scholar 

  30. Kilbourne AM, Neumann MS, Waxmonsky J, Bauer MS, Kim HM, Pincus HA, Thomas M. Public academic partnerships: Evidence-based implementation: The role of sustained community-based practice and research partnerships. Psychiatric Services 63(3):205–207, 2012.

    Article  PubMed  Google Scholar 

  31. Stratford A, Castle D, Brophy L. Integrating recovery-oriented practice into psychiatric registrar training. Australasian Psychiatry 20(6):524-526, 2012. doi:10.1177/1039856212465349.

    Article  PubMed  Google Scholar 

  32. Department of Health. The expert patient: a new approach to chronic disease management for the 21st century. London, Department of Health, 2001.

    Google Scholar 

  33. Gordon SE, Huthwaite MA, Short JA, Ellis PM. Discovering stigma through recovery teaching. Australasian Psychiatry 22(2):186–189, 2014.

    Article  PubMed  Google Scholar 

  34. Torrey W, Drake R. Practicing shared decision making in the outpatient psychiatric care of adults with severe mental illnesses: Redesigning care for the future. Community Mental Health Journal 46(5):433–440, 2010.

    Article  PubMed  Google Scholar 

  35. McGurk S, Mueser K, Pascaris A. Cognitive training and supported employment for persons with severe mental illness: One-year results from a randomized controlled trial. Schizophrenia Bulletin 31(4):898–909, 2005.

    Article  PubMed  Google Scholar 

  36. Fossey E, Harvey C, McDermott F, Davidson L. Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry 36(6):717–732, 2002.

    Article  PubMed  Google Scholar 

  37. Cresswell J, Plano Clark V. Designing and conducting mixed methods research. Thousand Oaks, Sage Publications, 2007.

    Google Scholar 

  38. Davidson L, Ridgway P, Schmutte T, O’Connell M. Purposes and goals of service user involvement in mental health research. In Wallcraft J, Amering M, Schrank B (Eds) Handbook of service user involvement in mental health research, London, Wiley, 2009.

    Google Scholar 

  39. State Government of Victoria, Department of Human Services. Cumulative harm: a conceptual overview. Best interests series, 2007. http://www.dhs.vic.gov.au/__data/assets/pdf_file/0012/589665/cumulative-harm-conceptual-overview-part1.pdf. Accessed 12 Jan 2015.

  40. Fossey E, Epstein M, Findlay R, Plant G, Harvey C. Creating a positive experience of research for people with psychiatric disabilities by sharing feedback. Psychiatric Rehabilitation Journal 25(4):369–378, 2002.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to acknowledge the research and editing support provided by Kim Abdurazak, Mind Australia.

Conflict of interest

We declare no potential conflict of interest.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Lisa Brophy.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Stratford, A., Brophy, L., Castle, D. et al. Embedding a Recovery Orientation into Neuroscience Research: Involving People with a Lived Experience in Research Activity. Psychiatr Q 87, 75–88 (2016). https://doi.org/10.1007/s11126-015-9364-4

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11126-015-9364-4

Keywords

Navigation