Skip to main content
SpringerLink
Log in

Specific Projects Led by Service Users

  • Chapter
  • First Online:
Mad Knowledges and User-Led Research

Part of the book series: The Politics of Mental Health and Illness ((PMHI))

  • 423 Accesses

Abstract

This chapter focuses in detail on two sets of projects that are user-led, that is the lead researcher was a survivor and most of the others involved were likewise survivors. Starting with an analysis of what makes a ‘user researcher’, which is not static, I go on to look at two conventional ‘methods’ that we radically altered to produce different knowledge. The ‘we’ is unambiguous here, I led both these pieces of work and worked with survivor colleagues. The examples are user-defined systematic reviews, taking the example of survivor perspectives on Electroconvulsive Therapy (ECT) and Patient-Generated Patient-Reported Outcome Measures (PG-PROMs), using the example of inpatient care. These ‘methodological innovations’ were of course conceptual too but there was a journey involved for the researchers to shift the lens away from methods, because our context—an academic one—was heavily geared towards the methodological. The changes were made so that survivors could speak freely, meaning that the elements of a story were collectively formed. I look at both projects critically and in relation to the ‘mainstream’ as well as in light of the arguments about ‘experience’ in the last chapter.

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

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Bhatnagar, B., & Williams, A. C. (1992). Participatory development and the World Bank: Potential directions for change (Vol. 183). World Bank Publications.

    Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

    Google Scholar 

  • Callon, M., & Rabeharisoa, V. (2003). Research “in the wild” and the shaping of new social identities. Technology in Society, 25(2), 193–204.

    Google Scholar 

  • Campbell, J. R. (2001). Participatory rural appraisal as qualitative research: distinguishing methodological issues from participatory claims. Human Organization, 60(4), 380–389.

    Google Scholar 

  • Campbell, C., & Jovchelovitch, S. (2000). Health, community and development: Towards a social psychology of participation. Journal of community and applied social psychology, 10(4), 255–270.

    Google Scholar 

  • Carroll, C., & Booth, A. (2015). Quality assessment of qualitative evidence for systematic review and synthesis: Is it meaningful, and if so, how should it be performed? Research Synthesis Methods, 6(2), 149–154.

    PubMed  Google Scholar 

  • Castro, E. M., Van Regenmortel, T., Sermeus, W., & Vanhaecht, K. (2019). Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis. Social Theory & Health, 17(3), 307–330.

    Google Scholar 

  • Choudry, A., & Kapoor, D. (2010). Learning from the ground up: Global perspectives on social movements and knowledge production: Springer.

    Google Scholar 

  • Collins, P. H. (2002). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. Routledge.

    Google Scholar 

  • Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social science & medicine, 41(12), 1667–1676.

    Google Scholar 

  • Crawford, M. J., Robotham, D., Thana, L., Patterson, S., Weaver, T., Barber, R., … Rose, D. (2011). Selecting outcome measures in mental health: The views of service users. Journal of Mental Health, 20(4), 336–346. https://doi.org/10.3109/09638237.2011.577114

    Article  PubMed  Google Scholar 

  • Dixon-Woods, M., Bonas, S., Booth, A., Jones, D. R., Miller, T., Sutton, A. J., … Young, B. (2006). How can systematic reviews incorporate qualitative research? A critical perspective. Qualitative Research, 6(1), 27–44.

    Google Scholar 

  • Evans, J., & Papoulias, S. C. (2020). Between funder requirements and ‘jobbing scientists’: The evolution of patient and public involvement in a mental health biomedical research centre-a qualitative study. Research Involvement and Engagement, 6(1), 1–12.

    Google Scholar 

  • Evans, J., Rose, D., Flach, C., Csipke, E., Glossop, H., McCrone, P., … Wykes, T. (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. https://doi.org/10.3109/09638237.2011.629240

    Article  PubMed  Google Scholar 

  • Faulkner, A. (2004). The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Policy Press: Bristol.

    Google Scholar 

  • Faulkner, A. (2017). Radical change or warm sentiments? A commentary on Gronholm et al. (2017) Interventions to reduce discrimination and stigma: The state of the art. Social Psychiatry and Psychiatric Epidemiology, 52(7), 777–779.

    PubMed  Google Scholar 

  • Faulkner, A., & Thomas, P. (2002). User-led research and evidence-based medicine. The British Journal of Psychiatry, 180(1), 1–3.

    PubMed  Google Scholar 

  • Faulkner, A., & Kalathil, K. (2012). The freedom to be, the chance to dream: Preserving user-led peer support in mental health. London: Together for Mental Wellbeing.

    Google Scholar 

  • Faulkner, A., & Thompson, R. (2021). Uncovering the emotional labour of involvement and co-production in mental health research. Disability & Society, 1–24. https://doi.org/10.1080/09687599.2021.1930519

  • Fernando, S., & Keating, F. (2008). Mental health in a multi-ethnic society: A multidisciplinary handbook. London: Routledge.

    Google Scholar 

  • Frederick, T., Tarasoff, L. A., Voronka, J., Costa, L., & Kidd, S. (2018). The problem with “community” in the mental health field. Canadian Journal of Community Mental Health, 36(Special Issue), 3–32.

    Google Scholar 

  • Freeman, M. C., Kolappa, K., de Almeida, J. M. C., Kleinman, A., Makhashvili, N., Phakathi, S., … Thornicroft, G. (2015). Reversing hard won victories in the name of human rights: A critique of the General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities. The Lancet Psychiatry, 2(9), 844–850.

    PubMed  Google Scholar 

  • Freire, P. (2018 (1968)). Pedagogy of the oppressed: Bloomsbury Publishing USA.

    Google Scholar 

  • Gault, I., Pelle, J. and Chambers, M. (2019). Co‐production for service improvement: developing a training programme for mental health professionals to enhance medication adherence in Black, Asian and Minority Ethnic Service Users. Health Expectations, 22(4), pp. 813–823.

    Google Scholar 

  • Gillan, K., & Pickerill, J. (2012). The difficult and hopeful ethics of research on, and with, social movements. Social Movement Studies, 11(2), 133–143.

    Google Scholar 

  • Gray, G. E., & Pinson, L. A. (2003). Evidence-based medicine and psychiatric practice. Psychiatric Quarterly, 74(4), 387–399.

    PubMed  Google Scholar 

  • Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science & Medicine, 60(4), 833–843.

    Google Scholar 

  • Greenhalgh, T., & Hurwitz, B. (1999). Narrative based medicine: Why study narrative? BMJ. British Medical Journal, 318(7175), 48.

    PubMed  PubMed Central  Google Scholar 

  • Greenhalgh, T., Snow, R., Ryan, S., Rees, S., & Salisbury, H. (2015). Six ‘biases’ against patients and carers in evidence-based medicine. BMC Medicine, 13(1), 1.

    Google Scholar 

  • Greenwood, K. E., Sweeney, A., Williams, S., Garety, P., Kuipers, E., Scott, J., & Peters, E. (2009). CHoice of outcome in Cbt for psychosEs (CHOICE): The development of a new service user–led outcome measure of CBT for psychosis. Schizophrenia Bulletin, sbp117.

    Google Scholar 

  • Grey, F. (2016). Dialogue with others. Philosophy, Psychiatry, & Psychology, 23(3), 261–264.

    Google Scholar 

  • Harding, S. (1991). “Strong objectivity” and socially situated knowledge. In S. Harding (Ed.), Whose science? Whose knowledge? (pp. 138–163). Cornell University Press.

    Google Scholar 

  • Harding, S. (1992). Rethinking standpoint epistemology: What is “strong objectivity?”. The Centennial Review, 36(3), 437–470.

    Google Scholar 

  • Harding, S. G. (2004). The feminist standpoint theory reader: Intellectual and political controversies. Psychology Press.

    Google Scholar 

  • Henkel H. S. R. (2001). Participation as spiritual duty; empowerment as secular subjection. In K. U. Cooke B. (Ed.), Participation, the new tyranny? London: Zed Books.

    Google Scholar 

  • Hollingshead, A. B., & Redlich, F. C. (1958). Social class and mental illness: Community study.

    Google Scholar 

  • Houston, E., Osborn, A., Lyons, T., Masvawure, T., & Raja, S. (2015). Exploring perceived social support from peer facilitators in an HIV treatment adherence intervention for African American patients: A content analysis of participant perspectives. Journal of Community & Applied Social Psychology, 25(6), 487–501.

    Google Scholar 

  • Isaksson, A., Corker, E., Cotney, J., Hamilton, S., Pinfold, V., Rose, D., . . . Evans-Lacko, S. (2017). Coping with stigma and discrimination: evidence from mental health service users in England. Epidemiology and Psychiatric Sciences, 1–12.

    Google Scholar 

  • Jackson, J. S., Torres, M., Caldwell, C. H., Neighbors, H. W., Nesse, R. M., Taylor, R. J., . . . Williams, D. R. (2004). The National Survey of American Life: a study of racial, ethnic and cultural influences on mental disorders and mental health. International journal of methods in psychiatric research, 13(4), 196–207.

    Google Scholar 

  • Kalathil, J., Bhakta, R., Daniel, O., Joseph, D., & Trivedi, P. (2011). Recovery and resilience: African, African-Caribbean and South Asian women’s narratives of recovering from mental distress. London: Mental Health Foundation.

    Google Scholar 

  • Kline, P. (2015). A Handbook of Test Construction (Psychology Revivals): Introduction to Psychometric Design. Routledge: London and New York.

    Google Scholar 

  • Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 363–385.

    Google Scholar 

  • MacKenzie, D. (2005). Opening the black boxes of global finance. Review of International Political Economy, 12(4), 555–576.

    Google Scholar 

  • Maguire, P. (2006). Uneven ground: Feminisms and action research. In H. Bradbury & P. Reason (Eds.), Handbook of action research (pp. 60–70).

    Google Scholar 

  • Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient‐reported outcome measures on routine practice: A structured review. Journal of evaluation in clinical practice, 12, 559–568.

    Google Scholar 

  • Mason, R., & Boutilier, M. (1996). The challenge of genuine power sharing in participatory research: the gap between theory and practice. Can J Commun Ment Health, 15(2), 145–152. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/10166891

  • Mason, R., & Boutilier, M. (2009). The challenge of genuine power sharing in participatory research: The gap between theory and practice. Canadian Journal of Community Mental Health, 15(2), 145–152.

    Google Scholar 

  • Metzl, J. M. (2010). The protest psychosis: How schizophrenia became a black disease: Beacon Press.

    Google Scholar 

  • MIND. (2004). WardWatch. London: MIND.

    Google Scholar 

  • Mosavel, M., Simon, C., Van Stade, D., & Buchbinder, M. (2005). Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question. Social science & medicine, 61(12), 2577–2587.

    Google Scholar 

  • Näslund, H. (2020). Collective deliberations and hearts on fire: Experiential knowledge among entrepreneurs and organisations in the mental health service user movement. VOLUNTAS: International Journal of Voluntary and Nonprofit Organizations, 33, 1–12.

    Google Scholar 

  • Neale, J., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Strang, J., . . . Wykes, T. (2014). How should we measure addiction recovery? Analysis of service provider perspectives using online Delphi groups. Drugs: education, prevention and policy, 21(4), 310–323.

    Google Scholar 

  • Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., . . . Strang, J. (2015). “You’re all going to hate the word ‘recovery’by the end of this”: Service users’ views of measuring addiction recovery. Drugs: education, prevention and policy, 22(1), 26–34.

    Google Scholar 

  • Noorani, T. (2013). Service user involvement, authority and the ‘expert-by-experience’in mental health. Journal of Political Power, 6(1), 49–68.

    Google Scholar 

  • Ochocka, J., Janzen, R., & Nelson, G. (2002). Sharing power and knowledge: Professional and mental health consumer/survivor researchers working together in a participatory action research project. Psychiatric Rehabilitation Journal, 25(4), 379.

    PubMed  Google Scholar 

  • Oppenheim, A. N. (2000). Questionnaire design, interviewing and attitude measurement. Bloomsbury Publishing.

    Google Scholar 

  • Perkins, R., Repper, J., Rinaldi, M., & Brown, H. (2012). 1. Recovery Colleges. London: IMRoC.

    Google Scholar 

  • Philpot, M., Collins, C., Trivedi, P., Treloar, A., Gallacher, S., & Rose, D. (2004). Eliciting users’ views of ECT in two mental health trusts with a user-designed questionnaire. Journal of Menta`l Health, 13(4), 403–413. https://doi.org/10.1080/09638230410001729843

  • Plsek, P. E., & Greenhalgh, T. (2001). Complexity science: The challenge of complexity in health care. BMJ: British Medical Journal, 323(7313), 625.

    PubMed  PubMed Central  Google Scholar 

  • Popper, K. R. (1970). Normal science and its dangers. Cambridge University Press.

    Google Scholar 

  • Radermacher, H., Sonn, C., Keys, C., & Duckett, P. (2010). Disability and participation: It’s about us but still without us! Journal of Community & Applied Social Psychology, 20(5), 333–346.

    Google Scholar 

  • Reville, D., & Church, K. (2012). Mad Activism Enters Its Fifth Decade: Psychiatric Survivor Organizing in Toronto. In A. Choudry, E. Shragge, & J. Hanley (Eds.). Organize!: Building from the Local for Global Justice (pp. 189–201). Toronto: PM Press.

    Google Scholar 

  • Ritchie, J., & Spencer, L. (2002). Qualitative data analysis for applied policy research. The Qualitative Researcher’s Companion, 573, 305–329.

    Google Scholar 

  • Robotham, D., Wykes, T., Rose, D., Doughty, L., Strange, S., Neale, J., & Hotopf, M. (2016). Service user and carer priorities in a Biomedical Research Centre for mental health. In: Taylor & Francis.

    Google Scholar 

  • Rose, D. (2003). Having a diagnosis is a qualification for the job. British Medical Journal, 326(7402), 1331.

    PubMed  PubMed Central  Google Scholar 

  • Rose, D. (2014). Patient and public involvement in health research: Ethical imperative and/or radical challenge? Journal of Health Psychology, 19(1), 149–158.

    PubMed  Google Scholar 

  • Rose, D. (2021). Critical qualitative research on ‘madness’: Knowledge making and activism among those designated ‘mad’. Wellcome Open Research, 6.

    Google Scholar 

  • Rose, D., Evans, J., Sweeney, A., & Wykes, T. (2011). A model for developing outcome measures from the perspectives of mental health service users. International Review of Psychiatry, 23(1), 41–46. https://doi.org/10.3109/09540261.2010.545990

    Article  PubMed  Google Scholar 

  • Rose, D., Fleischmann, P., & Wykes, T. (2004). Consumers’ views of electroconvulsive therapy: A qualitative analysis. Journal of Mental Health, 13(3), 285–293. https://doi.org/10.1080/09638230410001700916

    Article  Google Scholar 

  • Rose, D., Fleischmann, P., Wykes, T., Leese, M., & Bindman, J. (2003). Patients’ perspectives on electroconvulsive therapy: Systematic review. BMJ, 326(7403), 1363.

    PubMed  PubMed Central  Google Scholar 

  • Rose, D., Evans, J., Laker, C., & Wykes, T. (2015). Life in acute mental health settings: experiences and perceptions of service users and nurses. Epidemiology and psychiatric sciences, 24(1), 90–96.

    Google Scholar 

  • Rose, D., MacDonald, D., Wilson, A., Crawford, M., Barnes, M., & Omeni, E. (2016). Service user led organisations in mental health today. Journal of Mental Health, 25, 1–6.

    Google Scholar 

  • Rose, D., Sweeney, A., Leese, M., Clement, S., Jones, I. R., Burns, T., … Wykes, T. (2009). Developing a user-generated measure of continuity of care: Brief report. Acta Psychiatrica Scandinavica, 119(4), 320–324. https://doi.org/10.1111/j.1600-0447.2008.01296.x

    Article  PubMed  Google Scholar 

  • Rose, D. S., Wykes, T. H., Bindman, J. P., & Fleischmann, P. S. (2005). Information, consent and perceived coercion: Patients’ perspectives on electroconvulsive therapy. The British Journal of Psychiatry, 186(1), 54–59.

    PubMed  Google Scholar 

  • Schwandt, T. A., Lincoln, Y. S., & Guba, E. G. (2007). Judging interpretations: But is it rigorous? trustworthiness and authenticity in naturalistic evaluation. New Directions for Evaluation, 2007(114), 11–25.

    Google Scholar 

  • Semkovska, M., Keane, D., Babalola, O., & McLoughlin, D. M. (2011). Unilateral brief-pulse electroconvulsive therapy and cognition: Effects of electrode placement, stimulus dosage and time. Journal of Psychiatric Research, 45(6), 770–780.

    PubMed  Google Scholar 

  • Semkovska, M., & McLoughlin, D. M. (2014). Retrograde autobiographical amnesia after electroconvulsive therapy: On the difficulty of finding the baby and clearing murky bathwater. The Journal of ECT, 30(3), 187–188.

    PubMed  Google Scholar 

  • Shapin, S., & Fuller, S. (2015). Never pure: Historical studies of science as if it was produced by people with bodies, situated in time, space, culture, and society, and struggling for credibility and authority. Aestimatio: Critical Reviews in the History of Science, 8, 97–100.

    Google Scholar 

  • Spandler, H., Anderson, J., & Sapey, B. (2015). Madness, distress and the politics of disablement. Policy Press.

    Google Scholar 

  • Squire, L. R., Slater, P. C., & Miller, P. L. (1981). Retrograde amnesia and bilateral electroconvulsive therapy: Long-term follow-up. Archives of General Psychiatry, 38(1), 89–95.

    PubMed  Google Scholar 

  • Staddon, P. (2015). Mental Health Service Users in Research: Critical Sociological Perspectives. Bristol: Policy Press.

    Google Scholar 

  • Sweeney, A., Gillard, S., Wykes, T., & Rose, D. (2015). The role of fear in mental health service users’ experiences: a qualitative exploration. Social psychiatry and psychiatric epidemiology, 50(7), 1079–1087.

    Google Scholar 

  • Thompson, B. (2004). Exploratory and confirmatory factor analysis: Understanding concepts and applications: American Psychological Association.

    Google Scholar 

  • Voronka, J. (2017). Turning mad knowledge into affective labor: The case of the peer support worker. American Quarterly, 69(2), 333–338.

    Google Scholar 

  • Walsh, J., & High, S. (1999). Re-thinking the Concept of ‘Community’. Social History/Histoire Sociale, 32(64), 255–274.

    Google Scholar 

  • Webber, M., Corker, E., Hamilton, S., Weeks, C., Pinfold, V., Rose, D., . . . Henderson, C. (2014). Discrimination against people with severe mental illness and their access to social capital: findings from the Viewpoint survey. Epidemiology and psychiatric sciences, 23(02), 155–165.

    Google Scholar 

  • Woods, A. (2011). The limits of narrative: Provocations for the medical humanities. Journal of Medical humanities, 37(2), 73–78.

    Google Scholar 

  • Wykes, T., Evans, J., Paton, C., Barnes, T., Taylor, D., Bentall, R., . . . Vitoratou, S. (2017). What side effects are problematic for patients prescribed antipsychotic medication? The Maudsley Side Effects (MSE) measure for antipsychotic medication. Psychological Medicine, 1–10.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Australian National University, Canberra, ACT, Australia

    Diana Susan Rose

Authors
  1. Diana Susan Rose
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

Copyright information

© 2022 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Rose, D.S. (2022). Specific Projects Led by Service Users. In: Mad Knowledges and User-Led Research . The Politics of Mental Health and Illness. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-07551-3_8

Download citation

Publish with us

Policies and ethics

Search

Navigation