7,603
Views
105
CrossRef citations to date
0
Altmetric
Original Articles

Survivor research and Mad Studies: the role and value of experiential knowledge in mental health research

Pages 500-520 | Received 02 Aug 2016, Accepted 01 Mar 2017, Published online: 21 Mar 2017

References

  • Allam, S., S. Blyth, A. Fraser, S. Hodgson, J. Howes, J. Repper, and A. Newman. 2004. “Our Experience of Collaborative Research: Service Users, Carers and Researchers Work Together to Evaluate an Assertive Outreach Service.” Commentary in Journal of Psychiatric and Mental Health Nursing 11: 365–373.
  • Angell, M. 2009. “Drug Companies and Doctors: A Story of Corruption.” New York Review of Books, January 15.
  • Bentall, R., and D. Pilgrim. 2016. “There Are No Schizophrenia Genes: Here’s Why.” The Conversation. https://theconversation.com/there-are-no-schizophrenia-genes-heres-why-57294
  • Beresford, P. 2003. It’s Our Lives: A Short Theory of Knowledge, Distance and Experience. London: Citizen Press.
  • Beresford, P. 2010. “‘Re-Examining Relationships between Experience, Knowledge, Ideas and Research: A Key Role for Recipients of State Welfare and Their Movements.” Social Work and Society International Online Journal 8 (1). www.socwork.net/sws/article/view/19/56
  • Beresford, P. 2014. “Mad Studies Brings a Voice of Sanity to Psychiatry.” The Guardian, Tuesday October 7. www.theguardian.com/society/2014/oct/07/mad-studies-voice-of-sanity-psychiatry
  • Beresford, P., and R. Menzies. 2014. “Developing Partnerships to Resist Psychiatry within Academia.” In Psychiatry Disrupted: Theorizing Resistance and Crafting the (R)Evolution, edited by B. Burstow, B. LeFrançois and S. Diamond, 77–95. Canada: McGill-Queen’s University Press.
  • Beresford, P., M. Nettle, and R. Perring. 2010. Towards a Social Model of Madness and Distress? Exploring What Service Users Say. York: Joseph Rowntree Foundation. www.jrf.org.uk/sites/default/files/jrf/migrated/files/mental-health-service-models-full.pdf
  • Beresford, P., and J. Wallcraft. 1997. “Psychiatric System Survivors and Emancipatory Research: Issues, Overlaps and Differences.” Chap. 5 in Doing Disability Research, edited by Barnes and Mercer. http://disability-studies.leeds.ac.uk/files/library/Barnes-Chapter-5.pdf
  • Bishop, Dorothy V. M. 2014. “Changing the Landscape of Psychiatric Research: What Will the RDoC Initiative by NIMH Achieve?” Bishopblog. http://deevybee.blogspot.co.uk/2014/05/changing-landscape-of-psychiatric.html
  • Borkman, T. J. 1990. “Experiential, Professional, and Lay Frames of Reference.” In Chapter in Working with Self-Help, edited by T. J. Powell, 3–30. Silver Spring, Maryland: NASW Press.
  • Boxall, K., and P. Beresford. 2013. “Service User Research in Social Work and Disability Studies in the United Kingdom.” Disability & Society 28 (5): 587–600.10.1080/09687599.2012.717876
  • Bradstreet, S. 2006. “Harnessing the ‘Lived Experience’: Formalising Peer Support Approaches to Promote Recovery.” The Mental Health Review 11 (2): 33–37.
  • Brown, M., and G. Saini. 2016. A Day in the Life: What Happens When You Ask People Who Live with Mental Health Difficulties to Write about Their Everyday Life?. London: Centre for Mental Health. www.centreformentalhealth.org.uk/adayinthelifemh
  • Burstow, B. 2015. Psychiatry and the Business of Madness: An Ethical and Epistemological Accounting. New York: Palgrave Macmillan.
  • Campbell, P. 2005. “From Little Acorns: The Mental Health Service User Movement.” Chap. 6 in Beyond the Water Towers. London: Sainsbury Centre for Mental Health.
  • Carey, T. A., and D. Pilgrim. 2010. “Diagnosis and Formulation: What Should We Tell the Students?” Clinical Psychology and Psychotherapy 17: 447–454.10.1002/cpp.v17.6
  • Carr, S. 2013. “Individual Narratives and Collective Knowledge: Capturing Lesbian, Gay and Bisexual Service User Experiences.” Chap. 10 in Mental Health Service Users in Research, edited by P. Staddon, 135–152. Bristol: Policy Press.
  • Church, K. 2013. “In Whose Interests? Complicating Narrative Research.” Asylum 20 (4): 28–29.
  • Church, K. 2015. Making Mad Studies: Process, Practice and Contestations – Presentation to Ryerson University. Toronto, Canada. https://ryecast.ryerson.ca/80/Watch/8844.aspx
  • Coles, S., S. Keenan, and B. Diamond. 2013. Madness Contested: Power and Practice. Ross-on-Wye: PCCS Books.
  • Costa, L., J. Voronka, D. Landry, J. Reid, B. McFarlane, D. Reville, and K. Church. 2012. “Recovering Our Stories: A Small Act of Resistance.” Studies in Social Justice 6 (1): 85–101.
  • Department of Health. 2011. No Health Without Mental Health: A Cross-Government Mental Health Outcomes Strategy for People of All Ages. London: Stationery Office.
  • Dillon, J., and R. May. 2002. “Reclaiming Experience.” Clinical Psychology 17: 25–77.
  • Emerick, R. E. 1996. “Mad Liberation: The Sociology of Knowledge and the Ultimate Civil Rights Movement.” The Journal of Mind and Behaviour 17 (2): 135–160.
  • Evans, J., D. Rose, C. Flach, E. Csipke, H. Glossop, P. McCrone, T. Craig, and T. Wykes. 2012. “Voice: Developing a New Measure of Service Users’ Perceptions of Inpatient Care, Using a Participatory Methodology.” Journal of Mental Health 21 (1): 57–71.10.3109/09638237.2011.629240
  • Faulkner, A. 2010. Changing Our Worlds: Examples of User-Controlled Research in Action. Eastleigh: INVOLVE.
  • Faulkner, A. 2015. Randomised Controlled Trials: The Straitjacket of Mental Health Research? Talking Point Papers 1. London: The McPin Foundation.
  • Faulkner, A., and T. Basset. 2010. A Helping Hand: Consultations with Service Users about Peer Support. London: Together for Mental Wellbeing.
  • Faulkner, A., and J. Kalathil. 2012. The Freedom to Be, the Chance to Dream. London: Together for Mental Wellbeing.
  • Faulkner, A., and S. Layzell. 2000. Strategies for Living: A Report of User-Led Research into People’s Strategies for Living with Mental Distress. London: Mental Health Foundation.
  • Faulkner, A., and P. Thomas. 2002. “User-Led Research and Evidence Based Medicine.” Editorial British Journal of Psychiatry 180: 1–3.10.1192/bjp.180.1.1
  • Faulkner, A., S. Gillespie, S. Imlack, K. Dhillon, and M. Crawford. 2008. “Learning the Lessons Together.” Mental Health Today February: 24–26.
  • Fleischmann, P. 2009. “Literature Reviews: An Example of Making Traditional Research Methods User Focused.” Chap. 9 in This is Survivor Research, edited by A. Sweeney, P. Beresford, A. Faulkner, M. Nettle, and D. Rose, 82–97. Ross-on-Wye: PCCS Books.
  • Gillard, S., R. Borschmann, K. Turner, and M. Chambers. 2010. “What Difference Does It Make? Finding Evidence of the Impact of Mental Health Service User Researchers on Research into the Experiences of Detained Psychiatric Patients.” Health Expectations 13: 185–194.10.1111/hex.2010.13.issue-2
  • Glasby, J., and P. Beresford. 2006. “Who Knows Best? Evidence-Based Practice and the Service User Contribution.” Critical Social Policy 26 (1): 268–284.10.1177/0261018306059775
  • Goldacre, B. 2013. Bad Pharma. London: Fourth Estate.
  • Gorman, R. 2013. “Mad Nation? Thinking Through Race, Class and Mad Identity Politics.” In Mad Matters: A Critical Reader in Canadian Mad Studies, 269–280. Toronto: Canadian Scholars’ Press.
  • Harding, S. 1993. “Rethinking Standpoint Epistemology: What is ‘Strong Objectivity?”. Chap. 3 in Feminist Epistemologies, edited by L. Alcoff and E. Potter, 49–82. New York: Routledge.
  • Harmless. 2009. “In Our Own Words: Promoting Insight and Understanding of Self Harm.” Harmless. www.harmless.org.uk/store/Merchandise-Books/In-Our-Own-Words-Electronic
  • Hutchinson, A., and A. Lovell. 2012. “Participatory Action Research: Moving beyond the Mental Health ‘Service User’ Identity.” Journal of Psychiatric and Mental Health Nursing 2013 20: 641–649.
  • Jackson, C. 2010. “Critical Friends.” Openmind 161 January/February: 14–15.
  • Jones, N., and R. L. Brown. 2013. “The Absence of Psychiatric C/S/X Perspectives in Academic Discourse: Consequences and Implications.” Disability Studies Quarterly 33 (1): 1–10.
  • Jones, N., J. Harrison, R. Aguiar, and L. Munro. 2014. “Transforming Research for Transformative Change in Mental Health: Towards the Future.” Chap. 17 in Community Psychology and Community Mental Health: Towards Transformative Change, edited by G. Nelson, B. Kloos, and J. Ornelas, 351–372. Oxford University Press.
  • Kalathil, J. 2011a. Dancing to Our Own Tunes: Reassessing Black and Minority Ethnic Mental Health Service User Involvement: Reprint of the 2008 Report with a Review of Work Undertaken to Take the Recommendations Forward. London: NSUN.
  • Kalathil, J. 2011b. Recovery and Resilience: African, African-Caribbean and South Asian Women’s Narratives of Recovering from Mental Distress. London: Mental Health Foundation.
  • Kokushkin, M. 2014. “Standpoint Theory is Dead, Long Live Standpoint Theory! Why Standpoint Thinking Should Be Embraced by Scholars Who Do Not Identify as Feminists?” Journal of Arts and Humanities 3 (7): 8–20.
  • LeFrancois, B. 2015. “Acknowledging the past and Challenging the Present, in Contemplation of the Future: Some (Un)Doings of Mad Studies.” Presentation given to conference, Durham University.
  • LeFrancois, B. A., R. Menzies, and G. Reaume. 2013. Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press Inc.
  • Lindow, V. 2001. “Survivor Research.” In This is Madness Too, edited by C. Newnes, G. Holmes, and C. Dunn, 135–146. Ross-on-Wye: PCCS Books.
  • Marzillier, J., and J. Hall. 2009. “The Challenge of the Layard Initiative.” The Psychologist 2 (5): 396–399.
  • Menzies, R., B. A. LeFrancois, and G. Reaume. 2013. “Introducing Mad Studies.” In Mad Matters: A Critical Reader in Canadian Mad Studies, edited by LeFrancois et al. 1–22.
  • Middleton, H. 2013. “Mental Health Service Users’ Experiences and Epistemological Fallacy.” Chap. 2 in Staddon.
  • Morgan, A., A. Felton, B. Fulford, J. Kalathil, and G. Stacey. 2016. Values and Ethics in Mental Health: An Exploration for Practice. London: Palgrave.
  • Munn-Giddings, C., M. Boyce, L. Smith, and S. Campbell. 2009. “The Innovative Role of User Led Organisations.” A Life in the Day 13 (3): 14–20.10.1108/13666282200900026
  • Noorani, T. 2013. “Service User Involvement, Authority and the ‘Expert-by-Experience’ in Mental Health.” Journal of Political Power 6 (1): 49–68.10.1080/2158379X.2013.774979
  • Pembroke, L., ed. 1994. Eating Distress: Perspectives from Personal Experience. London: Survivors Speak Out. http://studymore.org.uk/edpfpe.pdf
  • Pembroke, L., ed. 1996. Self Harm: Perspectives from Personal Experience. London: Survivors Speak Out. http://studymore.org.uk/shpfpe.pdf
  • Petrie, D. A. 1998. “RCTs on Trial.” Correspondence in Annals of Emergency Medicine 32 (5): 633–634.
  • Pilgrim, D. 2007. “The Survivor of Psychiatric Diagnosis.” Social Science & Medicine 65 (2007): 536–547.10.1016/j.socscimed.2007.03.054
  • Repper, J., and T. Carter. 2011. “A Review of the Literature on Peer Support in Mental Health Services.” Journal of Mental Health August 2011 20 (4): 392–411.10.3109/09638237.2011.583947
  • Rose, D. 2004. “Telling Different Stories: User Involvement in Mental Health Research.” Research and Policy Planning 22 (2): 23–30.
  • Rose, D. 2008. “Commentary: Madness Strikes Back.” Journal of Community and Applied Social Psychology 18: 638–644.
  • Rose, D. 2009. “Survivor-Produced Knowledge.” Chap. 4 in This is Survivor Research, edited by A. Sweeney, P. Beresford, A. Faulkner, M. Nettle, and D. Rose, 38–43. Ross-on-Wye: PCCS Books.
  • Rose, D. 2014. “Patient and Public Involvement in Health Research: Ethical Imperative and/or Radical Challenge?” Journal of Health Psychology 19 (1): 149–158.10.1177/1359105313500249
  • Rose, D. 2015. “The Contemporary State of Service-User-Led Research.” The Lancet Psychiatry 2 (11): 959–960.10.1016/S2215-0366(15)00435-6
  • Rose, D., P. Fleischmann, T. Wykes, M. Leese, and J. Bindman. 2003. “Patients’ Perspectives on Electroconvulsive Therapy: Systematic Review.” BMJ 326: 1363.
  • Rose, D., P. Fleischmann, and T. Wykes. 2004. “Consumers’ Perspectives on ECT: A Qualitative Analysis.” Journal of Mental Health 13 (3): 285–294.
  • Russo, J. 2012. “Survivor-Controlled Research: A New Foundation for Thinking about Psychiatry and Mental Health.” Forum: Qualitative Social Research 13 (1) Art. 8 January 2012. http://nbn-resolving.de/urn:nbn:de:0114-fqs120187.
  • Russo, J. 2014. “Mental Health Service Users in Research: Critical Sociological Perspectives.” Book Review in Disability & Society. doi:10.1080/09687599.2013.864873.
  • Russo, J., and P. Beresford. 2015. “Between Exclusion and Colonisation: Seeking a Place for Mad People’s Knowledge in Academia.” Disability and Society 30 (1): 153–157. doi:10.1080/09687599.2014.957925.
  • Seebohm, P., P. Henderson, C. Munn-Giddings, P. Thomas, and S. Yasmeen. 2005. Together We Will Change: Community Development, Mental Health and Diversity. London: Sainsbury Centre for Mental Health.
  • Seebohm, P., C. Munn‐Giddings, and P. Brewer. 2010. “What’s in a Name? A Discussion Paper on the Labels and Location of Self‐Organising Community Groups, with Particular Reference to Mental Health and Black Groups.” Mental Health and Social Inclusion 14 (3): 23–49.10.5042/mhsi.2010.0441
  • Slade, M., and S. Priebe. 2012. “Conceptual Limitations of Randomised Controlled Trials.” Chap. 10 in Evidence in Mental Health Care, edited by S. Priebe and M. Slade, 101–108. London: Routledge.
  • Smail, D. 2006. “Implications for Practice.” Clinical Psychology Forum, Number 162: 17–20.
  • Staddon, P., ed. 2013. Mental Health Service Users in Research: Critical Sociological Perspectives. Bristol: Policy Press.
  • Sweeney, A. 2013. “Sociology and Survivor Research: An Introduction.” Chap. 1 in Mental Health Service Users in Research: Critical Sociological Perspectives, edited by P. Staddon, 1–10. Policy Press.
  • Sweeney, A. 2016. “Why Mad Studies Needs Survivor Research and Survivor Research Needs Mad Studies.” Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity and Practice. Special Issue: Mad Studies: Intersections with Disability Studies, Social Work and ‘Mental Health’ 5 (3): 36–61.
  • Telford, R., and A. Faulkner. 2004. “Learning about Service User Involvement in Mental Health Research.” Journal of Mental Health 13 (6): 549–559.10.1080/09638230400017137
  • Thomas, P. 2013. “Pinball Wizards and the Doomed Project of Psychiatric Diagnosis.” Mad in America Blog. www.madinamerica.com/2013/02/pinball-wizards-and-the-doomed-project-of-psychiatric-diagnosis/
  • Thomas, P. 2014. Psychiatry in Context: Experience, Meaning and Communities. Monmouth: PCCS Books.
  • Trivedi, P. 2009. “Black Service User Involvement: Rhetoric or Reality?” Chap. 10 in Mental Health in a Multi-Ethnic Society, edited by S. Fernando and F. Keating, 136–146. London: Routledge.
  • Turner, M., and P. Beresford. 2005. User-Controlled Research: Its Meaning and Potential. London: Shaping Our Lives and the Centre for Citizen Participation, Brunel University. Commissioned by INVOLVE www.invo.org.uk
  • Wallcraft, J. 2009. “From Activist to Researcher and Part-Way Back.” In This is Survivor Research, edited by A. Sweeney, P. Beresford, A. Faulkner, M. Nettle, and D. Rose, 132–139. Ross-on-Wye: PCCS Books.
  • Wallcraft, J., J. Read, and A. Sweeney. 2003. On Our Own Terms: Users and Survivors of Mental Health Services Working Together for Support and Change. London: Mental Health Foundation/User Survey Steering Group.
  • Walsh, J., and J. Boyle. 2009. “Improving Acute Psychiatric Hospital Services According to Inpatient Experiences: A User-led Piece of Research as a Means to Empowerment.” Issues in Mental Health Nursing 30 (1): 31–38.
  • Williamson, T., J. Brogden, E. Jones, and J. Ryan. 2010. “Impact of Public Involvement in Research on Quality of Life and Society: A Case Study Of Research Career Trajectories.” International Journal of Consumer Studies 34: 551–557.
  • Wilson, M. 2001. “Black Women and Mental Health: Working towards Inclusive Mental Health Services.” Feminist Review 68: 34–51.10.1080/01417780110042383

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.