Speaking Truth to Power: Mental Health Service Users’ Experiences of Participation in their Diagnosis and Treatment


  • Gloria Kirwan Maynooth University




In a qualitative study, long-term mental health service users shared their views on the concept of ‘participation’ as shaped by their personal histories of contact with mental health services in Ireland. Adopting a narrative methodology, the study participants were asked to draw on their experiences with mental health services to illustrate their general views on participation by service users in mental health care contexts.

In this study, the research participants recounted positive experiences of participation in which their expressed views regarding their symptoms and treatment needs were incorporated into the service responses they received. The data revealed that service users perceived open and inclusive communication by service providers as an important factor in optimising their ability to participate in help-seeking, diagnosis and treatment plans. However, the study also illuminated the chilling effect on participation when service users’ views were not heeded or acknowledged by service providers. The findings highlight how the failure to include service users’ insights can negatively encroach on service user participation. The service user narratives collected in this study exposed the often uneasy juxtaposition of the service user’s personally held ‘truth’ regarding their lived experience of mental distress versus the powerful system of expert diagnosis and treatment.

 This article focuses on reporting selective findings from the study regarding participation in the contexts of help-seeking, diagnosis and treatment decisions.

Author Biography

Gloria Kirwan, Maynooth University

Lecturer in Social Work. Dept of Applied Social Studies, National University of Ireland (Maynooth), Co. Kildare. Adjunct Assistant Professor of Social Work, Trinity College Dublin.


Ardila-Gómez, S. (2014) Users’ Perspecives on Evaluation of Mental Health Services: Experience from a Discharge Program in Argentina. International Journal of Mental Health, 43(2), 70-80.

Beresford, P. (2007a) User involvement, research and health inequalities: Developing new directions. Health and Social Care in the Community, 15(4), 306-312.

Beresford, P. (2007b) The role of service user knowledge in generating knowledge-based health and social care: from conflict to contribution. Evidence & Policy, 3(3), 329-341.

Beresford, P. (2012) The Theory and Philosophy Behind User Involvement. In P. Beresford & S. Carr (Eds.), Social Care, Service Users and User Involvement. London: Jessica Kingsley.

Beresford, P. & Croft, S. (1993) Citizen Involvement: A practical guide for change. Hampshire: Macmillan Press.

Beresford, P. & Croft, S. (2004) Service users and practitioners reunited: The key component for social work reform. British Journal of Social Work, 34(1), 53-68.

Bracken, P. (2012) Psychiatric power: a personal view. Irish Journal of Psychological Medicine, 29(1), 55-58.

Charles, C., Gafni, A. & Whelan, T. (1997) Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science and Medicine, 44, 681-692.

Copeland, M.E. (2005) Wellness recovery action plan: a system for monitoring, reducing and eliminating uncomfortable or dangerous physical symptoms and distressing emotional feelings or experience. Liverpool: Sefton Recovery Group.

Costa, L., Voronka, J., Landry, D., Reid, J., McFarlane, B., Reville, D. & Church, K. (2012) Recovering our Stories: A Small Act of Resistance. Studies in Social Justice, 6(1), 85-101.

Craig, G. (2003) Children’s participation through community development: Assessing the lessons from international experience. In C. Hallett & A. Prout (Eds.), Hearing the Voices of Children: Social Policy for a New Century. London: Routledge Farmar.

Croft, S. & Beresford, P. (1992) The politics of participation. Critical Social Policy, 12(35), 20-44.

Davies, K., Gray, M. & Webb, S.A. (2014) Putting the parity into service-user participation: An integrated model of social justice. International Journal of Social Welfare, 23, 119-127.

Department of Health (2006) A Vision for Change. Report of the Expert Group on Mental Health Policy. Dublin, Ireland: Dept of Health. Accessed on 20 December 2019 at: https://www.hse.ie/eng/services/publications/mentalhealth/mental-health---a-vision-for-change.pdf

Doucet, A. & Mauthner, N.S. (2008) What can be known and how? Narrated subjects and the Listening Guide. Qualitative Research, 8(3), 399-409.

Evans, M. (1993) Reading Lives: How The Personal Might Be Social. Sociology, 27(1), 5-13.

Fraser, N. (2005) Reforming justice in a globalising world. New Left Review, 36, 69-88.

Gilligan, C., Spencer, R., Weinberg, M.K. & Bertsch, T. (2009) On the Listening Guide: A Voice-Centred Relational Method. In S. Nagy Hesse-Biber & P. Leavy (Eds.), Emergent Methods in Social Research. London: Sage Publications.

Kennedy Chapin, R. (1995) Social Policy Development: The Strengths Perspective. Social Work, 40(4), 506-514.

Kirwan, G. (2017) Mental Health Service Users' Narratives of Participation: Consensus, Dissenus and Paradox. Unpublished PhD Thesis, Trinity College Dublin, Ireland.

Nicholson, H. (2009) Remembering conversations: reflections on research. The Journal of Applied Theatre and Performance, 14(3), 323-328.

Reissman, C.K. (1993) Narrative Analysis. London: Sage Publications.

Stiggelbout, A.M., Pieterse, A.H. & De Haes, J.C.J.M. (2015) Shared decision making: Concepts, evidence, and practice. Patient Education and Counselling, 98, 1172-1179.

Street (Jr), R.L. & Millay, B. (2001) Analyzing patient participation in medical encounters. Health Communication, 13(1), 61-73.

Tambuyzer, E. & Van Audenhove, C. (2013) Is perceived patient involvement in mental health care associated with satisfaction and empowerment? Health Expectations, 18, 516-526.

Veatch, R.M. (1972) Models for Ethical Medicine in a Revolutionary Age. What physician-patient roles foster the most ethical relationship? The Hastings Centre Report, 2(3), 5-7.

World Health Organisation (2013) Mental Health Action Plan 2013-2020. World Health Organisation. Accessed on 18 December 2019 at: https://www.who.int/mental_health/action_plan_2013/en/

World Health Organisation (2019) Mental Disorders. WHO Fact Sheet. Accessed on 20 December 2019 at https://www.who.int/news-room/fact-sheets/detail/mental-disorders

World Health Organisation’s Regional Office for Europe (2019) Mental Health: fact sheet. Accessed on 20 December 2019 at file:///C:/Users/kirwangm/Documents/SocWkSocScReview/Part2/Kirwan/MNH_FactSheet_ENG.pdf




How to Cite

Kirwan, G. (2020). Speaking Truth to Power: Mental Health Service Users’ Experiences of Participation in their Diagnosis and Treatment. Social Work and Social Sciences Review, 22(1), 137-156. https://doi.org/10.1921/swssr.v22i1.1351