Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-15T17:14:30.382Z Has data issue: false hasContentIssue false

Service user perspectives on the impact of a mental illness diagnosis

Published online by Cambridge University Press:  11 April 2011

Diana Rose*
Affiliation:
Health Service and Population Research Department, Institute of Psychiatry, King's College London, London (United Kingdom)
Graham Thornicroft
Affiliation:
Health Service and Population Research Department, Institute of Psychiatry, King's College London, London (United Kingdom)
*
Address for correspondence: Dr. D. Rose, Service User Research Enterprise, Health Service and Population Research Department, Institute of Psychiatry, King's College London, De Crespigny Park, London SE5 8AF (United Kingdom). E-mail: [email protected]

Summary

Aim – to provide a conceptual and practical analysis of the impacts of mental health diagnoses on consumers and to consider how service users might contribute to the new psychiatric classifications currently being drawn up. Methods – A search was carried out revealing a very sparse literature on this topic. Consultations with service users were conducted and the views of experts sought. Results – Diagnosis is important as it marks the formal status of psychiatric patient being conferred. Consumers react differently, and often, negatively to this. Stigma can follow from a diagnosis. The process of giving a diagnosis can range from one of negotiation and taking the person's strengths into account to the blunt allocation of an unwanted label. Consumers can be reduced to their diagnosis so it becomes their whole personhood and this can have an effect on their sense of self. However, consumers are not passive victims and have their own strategies for dealing with these issues. Conclusion – Consumers can use these experiences to make contributions to the new diagnostic classification systems and to future research.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Amnesty International (2000). Ethical Codes and Declarations Relevant to the Health Professions. Amnesty International: London.Google Scholar
Angermeyer, M. C. & Matschinger, H. (2005). Labeling-stereotype-discrimination. An investigation of the stigma process. Social Psychiatry and Psychiatric Epidemiology 40, 391395.CrossRefGoogle ScholarPubMed
Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C. & Bond, J. (2004). Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry 19, 151169.CrossRefGoogle ScholarPubMed
Bartlett, P., Lewis, O. & Thorold, O. (2006). Mental Disability and the European Convention on Human Rights. Martinus Nijhoff: Leiden.Google Scholar
Beeforth, M. & Wood, H. (2001). Needs from a user perspective. In Measuring Mental Health Needs, 2nd ed. (ed. Thornicroft, G.), pp. 190199. Gaskell, Royal College of Psychiatrists: London.Google Scholar
Berk, M., Dodd, S., Callaly, P., Berk, L., Fitzgerald, P., de Castella, A.R., Filia, S., Filia, K., Tahtalian, S., Biffin, F., Kelin, K., Smith, M., Montgomery, W. & Kulkarni, J. (2007). History of illness prior to a diagnosis of bipolar disorder or schizoaffective disorder. Journal of Affective Disorders 103, 181186.CrossRefGoogle ScholarPubMed
Biernat, M. & Dovidio, J. (2000). Stigma and stereotypes. In The Social Psychology of Stigma (ed. Heatherton, T.F. et al.), pp. 88125. Guildford: New York.Google Scholar
Castle, D., Morgan, V., & Jablensky, A. (2002). Antipsychotic use in Australia: the patients’ perspective. Australian and New Zealand Journal of Psychiatry 36, 633641.CrossRefGoogle ScholarPubMed
Cochlan, R., Lawrence, D., Holman, D. & Jablensky, A. (2001). Duty of Care: Physical Illness in People with Mental Illness. Department of Public Health and Department of Psychiatry and Behavioural Science, University of Western Australia: Perth.Google Scholar
Cox, A., Jenkins, V., Catt, S., Langridge, C. & Fallowfield, L. (2006a). Information needs and experiences: an audit of UK cancer patients. European Journal of Oncology Nursing 10, 263272.CrossRefGoogle ScholarPubMed
Crisp, A. (2004). Every Family in the Land: Understanding Prejudice and Discrimination Against People with Mental Illness. Royal Society of Medicine Press: London.Google Scholar
Dalgin, R.S. & Gilbride, D. (2003). Perspectives of people with psychiatric disabilities on employment disclosure. Psychiatric Rehabilitation Journal 26, 306310.CrossRefGoogle ScholarPubMed
Dear, M. & Wolch, J. (1992). Landscapes of Despair. Princeton University Press: Princeton.CrossRefGoogle Scholar
Desapriya, E.B. & Nobutada, I. (2002). Stigma of mental illness in Japan. Lancet 359(9320), 1866.CrossRefGoogle ScholarPubMed
Dickey, B. & Wagenaar, H. (1994). Evaluating mental health care reform: including the clinician, client, and family perspective. Journal of Mental Health Administration 21, 313319.CrossRefGoogle ScholarPubMed
Disability Rights Commission (2006). Equal Treatment: Closing the Gap. A Formal Investigation into Physical Health Inequalities Experienced by People with Learning Disabilities and/or Mental Health Problems. Disability Rights Commission: London.Google Scholar
Douglas, M. (2002). Purity and Danger: An Analysis of Concepts of Pollution and Taboo. Routledge: London.Google Scholar
Dovidio, J., Major, B. & Crocker, J. (2000). Stigma: introduction and overview. In The Social Psychology of Stigma (ed. Heatherton, T.F. et al.), pp. 128. Guilford Press: New York.Google Scholar
Druss, B.G. (2000). Cardiovascular procedures in patients with mental disorders. Journal of American Medical Association 283, 31983199.Google Scholar
Entwistle, V.A., Renfrew, M.J., Yearley, S., Forrester, J. & Lamont, T. (1998). Lay perspectives: advantages for health research. British Medical Journal 316, 463466.CrossRefGoogle ScholarPubMed
Estroff, S. (1981). Making it Crazy: Ethnography of Psychiatric Clients in an American Community. University of California Press: Berkeley.Google Scholar
Falk, G. (2001), Stigma: How We Treat Outsiders. Prometheus Books: New York.Google Scholar
Fallowfield, L. & Jenkins, V. (2004). Communicating sad, bad, and difficult news in medicine. Lancet 363(9405), 312319.CrossRefGoogle ScholarPubMed
Fallowfield, L. & Jenkins, V. (2006). Current concepts of communication skills training in oncology. Recent Results in Cancer Research 168, 105112.CrossRefGoogle ScholarPubMed
Goto, M. (2003). [Family psychoeducation in Japan]. Seishin Shinkeigaku Zasshi 105, 243247.Google ScholarPubMed
Hegner, R.E. (2000). Dispelling the myths and stigma of mental illness: the Surgeon General's report on mental health. Issue Brief (George Washington University. National Health Policy Forum)/ 754, 17.Google Scholar
Horn, N., Johnstone, L. & Brooke, S. (2007). Some service user perspectives on the diagnosis of personality disorder. Journal of Mental Health 16, 255269.CrossRefGoogle Scholar
Jones, S. & Hayward, P. (2004). Coping with Schizophrenia: A Guide for Patients, Families and Carers. Oneworld Publications: Oxford.Google Scholar
Kim, Y. & Berrios, G.E. (2001). Impact of the term schizophrenia on the culture of ideograph: the Japanese experience. Schizophrenia Bulletin 27, 181185.CrossRefGoogle ScholarPubMed
Lai, Y.M., Hong, C.P. & Chee, C.Y. (2001). Stigma of mental illness. Singapore Medical Journal 42, 111114.Google ScholarPubMed
Lakoff, A. (2006). Pharmaceutical Reason: Knowledge and Value in Global Psychiatry. Cambridge University Press: Cambridge.Google Scholar
Lauber, C., Nordt, C., Braunschweig, C. & Rossler, W. (2006). Do mental health professionals stigmatize their patients? Acta Psychiatrica Scandinavica 113, Suppl. 429, 5159.Google Scholar
Lee, S., Lee, M.T., Chiu, M.Y. & Kleinman, A. (2005). Experience of social stigma by people with schizophrenia in Hong Kong. British Journal of Psychiatry 186, 153157.CrossRefGoogle ScholarPubMed
Leese, M., Johnson, S., Slade, M., Parkman, S., Kelly, F., Phelan, M. & Thornicroft, G. (1998). User perspective on needs and satisfaction with mental health services. PRiSM Psychosis Study. 8. British Journal of Psychiatry 173, 409415.Google Scholar
Lester, H., Tritter, J.Q. & England, E. (2003). Satisfaction with primary care: the perspectives of people with schizophrenia. Family Practice 20, 508513.CrossRefGoogle ScholarPubMed
Lieberman, J.A. & First, M.B. (2007). Renaming schizophrenia. British Medical Journal 334(7585), 108.CrossRefGoogle ScholarPubMed
Littlewood, R. (1998). Cultural variation in the stigmatisation of mental illness. Lancet 352(9133), 10561057.CrossRefGoogle ScholarPubMed
Magliano, L., Fiorillo, A., Malangone, C., Del Vecchio, H., Maj, M. & the Users’ Opinions Questionnaire Working Group (2008). Views of persons with schizophrenia on their own disorder: An Italian participatory study. Psychiatric Services 59, 797799.Google Scholar
Mezzich, J.E. (2007). Psychiatry for the person: articulating medicine's science and humanism. World Psychiatry 6, 6567.Google ScholarPubMed
Mino, Y., Yasuda, N., Tsuda, T. & Shimodera, S. (2001). Effects of a onehour educational program on medical students’ attitudes to mental illness. Psychiatry and Clinical Neuroscience 55, 501507.CrossRefGoogle ScholarPubMed
Mueser, K.T. & Gingerich, S. (2005). Coping with Schizophrenia: a Guide for Families. Guildford Press: New York.Google Scholar
Mueser, K.T., Meyer, P.S., Penn, D.L., Clancy, R., Clancy, D.M. & Salyers, M.P. (2006). The Illness Management and Recovery program: rationale, development, and preliminary findings. Schizophrenia Bulletin 32, Suppl. 1, S32S43.CrossRefGoogle ScholarPubMed
Nordt, C., Rossler, W. & Lauber, C. (2006). Attitudes of mental health professionals toward people with schizophrenia and major depression. Schizophrenia Bulletin 32, 709714.CrossRefGoogle ScholarPubMed
O'Toole, M.S., Ohlsen, R.I., Taylor, T.M., Purvis, R., Walters, J. & Pilowsky, L.S. (2004). Treating first episode psychosis–the service users’ perspective: a focus group evaluation. Journal of Psychiatry and Mental Health Nursing 11, 319326.CrossRefGoogle ScholarPubMed
Okin, R.L., Dolnick, J.A. & Pearsall, D.T. (1983). Patients’ perspectives on community alternatives to hospitalization: a follow-up study. American Journal of Psychiatry 140, 14601464.Google Scholar
Read, J., Haslam, N., Sayce, L. & Davies, E. (2006). Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’ approach. Acta Psychiatrica Scandinavica 114, 303318.CrossRefGoogle ScholarPubMed
Repper, J. & Perkins, R. (2003). Social Inclusion and Recovery. Balliere Tindall: Edinburgh.Google Scholar
Rose, D. (2001). Users’ Voices, The Perspectives of Mental Health Service Users on Community and Hospital Care. The Sainsbury Centre: London.Google Scholar
Rose, D. & Lucas, J. (2006). The user and survivor movement in Europe. In Mental Health Policy and Practice Across Europe. The Future Direction of Mental Health Care (ed. Knapp, M. et al.). Open University Press: Milton Keynes.Google Scholar
Rose, D., Fleishmann, P., Tonkiss, F., Campbell, P. & Wykes, T. (2002). User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature. NCCSDO: London.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. British Journal of Psychiatry 186, 5459.CrossRefGoogle ScholarPubMed
Rose, D., Thornicroft, G. & Slade, M. (2006). Who decides what evidence is? Developing a multiple perspectives paradigm in mental health. Acta Psychiatrica Scandinavica, Suppl. no. 429, 109114.CrossRefGoogle Scholar
Rose, D., Fleischmann, P. & Schofield, P. (in press). User perceptions of user involvement. International Journal of Social Psychiatry.Google Scholar
Salvador-Carulla, L. & Berti, M. (2008). Mental retardation’ or ‘intellectual disability’: Time for a conceptual change. Psychopathology 41, 1016.CrossRefGoogle ScholarPubMed
Salyers, M.P., Godfrey, J.L., Mueser, K.T. & Labriola, S. (2007). Measuring illness management outcomes: A psychometric study of clinician and consumer rating scales for illness self management and recovery. Community Mental Health Journal 43, 459480.CrossRefGoogle Scholar
Sartorius, N. (1988). International perspectives of psychiatric classification. British Journal of Psychiatry, Suppl. 1, 914.CrossRefGoogle Scholar
Schulz, S., Markó, K. & Suntisrivaraporn, B. (2008). Formal representation of complex SNOMED CT expressions. BMC Medical Informatics and Decision Making 8, Suppl. 1, S9.CrossRefGoogle ScholarPubMed
Shepherd, G., Murray, A. & Muijen, M. (1995). Perspectives on schizophrenia: A survey of user, family carer and professional views regarding effective care. Journal of Mental Health (UK) 4, 403422.Google Scholar
Slade, M., Amering, M. & Oades, L. (2008). Recovery: an international perspective. Epidemiologia e Psichiatria Sociale 17, 128137.CrossRefGoogle ScholarPubMed
Smart, L. & Wegner, D.M. (1999). Covering up what can't be seen: concealable stigma and mental control. Journal of Personality and Social Psychology 77, 474486.CrossRefGoogle ScholarPubMed
Smart, L. & Wegner, D. (2000). The hidden costs of hidden stigma. In The Social Psychology of Stigma (ed. Heatherton, T.F. et al.), pp. 220242. Guilford: New York.Google Scholar
Social Exclusion Unit (2004). Mental Health and Social Exclusion. Office of the Deputy Prime Minister: London.Google Scholar
Takizawa, T. (1993). Patients and their families in Japanese mental health. New Directions for Mental Health Services 60, 2534.CrossRefGoogle Scholar
Thornicroft, G. (2006). Shunned: Discrimination against People with Mental Illness. Oxford University Press: Oxford.Google Scholar
Thornicroft, G., Brohan, E., Rose, D., Sartorius, N. & Leese, M. (2009). Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey. Lancet 373, 408415.Google Scholar
Tylee, A. (1999). Depression in the community: physician and patient perspective. Journal of Clinical Psychiatry 60, Suppl. 7, 1216.Google Scholar
Wasow, M. (1983). Parental perspectives on chronic schizophrenia. Journal of Chronic Diseases 36, 337343.CrossRefGoogle ScholarPubMed
Mino, Y., Yasuda, N., Tsuda, T. & Shimodera, S. (2001). Effects of a onehour educational program on medical students’ attitudes to mental illness. Psychiatry and Clinical Neuroscience 55, 501507.Google Scholar
Mueser, K.T. & Gingerich, S. (2005). Coping with Schizophrenia: a Guide for Families. Guildford Press: New York.Google Scholar
Mueser, K.T., Meyer, P.S., Penn, D.L., Clancy, R., Clancy, D.M. & Salyers, M.P. (2006). The Illness Management and Recovery program: rationale, development, and preliminary findings. Schizophrenia Bulletin 32, Suppl. 1, S32S43.CrossRefGoogle ScholarPubMed
Nordt, C., Rossler, W. & Lauber, C. (2006).Attitudes of mental health professionals toward people with schizophrenia and major depression. Schizophrenia Bulletin 32, 709714.CrossRefGoogle ScholarPubMed
O'Toole, M.S., Ohlsen, R.I., Taylor, T.M., Purvis, R., Walters, J. & Pilowsky, L.S. (2004). Treating first episode psychosis-the service users' perspective: a focus group evaluation. Journal of Psychiatry and Mental Health Nursing 11, 319326.CrossRefGoogle ScholarPubMed
Okin, R.L., Dolnick, J.A. & Pearsall, D.T. (1983). Patients’ perspectives on community alternatives to hospitalization: a follow-up study. American Journal of Psychiatry 140, 14601464.Google ScholarPubMed
Read, J., Haslam, N., Sayce, L. & Davies, E. (2006). Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’ approach. Acta Psychiatrica Scandinavica 114, 303318.CrossRefGoogle ScholarPubMed
Repper, J. & Perkins, R. (2003). Social Inclusion and Recovery. Balliere Tindall: Edinburgh.Google Scholar
Rose, D. (2001). Users’ Voices, The Perspectives of Mental Health Service Users on Community and Hospital Care. The Sainsbury Centre: London.Google Scholar
Rose, D. & Lucas, J. (2006). The user and survivor movement in Europe. In Mental Health Policy and Practice Across Europe. The Future Direction of Mental Health Care (ed. Knapp, M. et al.). Open University Press: Milton Keynes.Google Scholar
Rose, D., Fleishmann, P., Tonkiss, F., Campbell, P. & Wykes, T. (2002). User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature. NCCSDO: London.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. British Journal of Psychiatry 186, 5459.CrossRefGoogle ScholarPubMed
Rose, D., Thornicroft, G. & Slade, M. (2006). Who decides what evidence is? Developing a multiple perspectives paradigm in mental health. Acta Psychiatrica Scandinavica, Suppl. no. 429, 109114.Google Scholar
Rose, D., Fleischmann, P. & Schofield, P. (in press). User perceptions of user involvement. International Journal of Social Psychiatry.Google Scholar
Salvador-Carulla, L. & Berti, M. (2008). Mental retardation’ or ‘intellectual disability': Time for a conceptual change. Psychopathology 41, 1016.CrossRefGoogle ScholarPubMed
Salyers, M.P., Godfrey, J.L., Mueser, K.T. & Labriola, S. (2007). Measuring illness management outcomes: A psychometric study of clinician and consumer rating scales for illness self management and recovery. Community Mental Health Journal 43, 459480.CrossRefGoogle Scholar
Sartorius, N. (1988). International perspectives of psychiatric classification. British Journal of Psychiatry, Suppl. 1, 914.Google Scholar
Schulz, S., Markó, K. & Suntisrivaraporn, B. (2008). Formal representation of complex SNOMED CT expressions. BMC Medical Informatics and Decision Making 8, Suppl. 1, S9.Google Scholar
Shepherd, G., Murray, A. & Muijen, M. (1995). Perspectives on schizophrenia: A survey of user, family carer and professional views regarding effective care. Journal of Mental Health (UK) 4, 403422.Google Scholar
Slade, M., Amering, M. & Oades, L. (2008). Recovery: an international perspective. Epidemiologia e Psichiatria Sociale 17, 128137.CrossRefGoogle ScholarPubMed
Smart, L. & Wegner, D.M. (1999). Covering up what can't be seen: concealable stigma and mental control. Journal of Personality and Social Psychology 77, 474486.Google Scholar
Smart, L. & Wegner, D. (2000). The hidden costs of hidden stigma. In The Social Psychology of Stigma (ed. Heatherton, T.F. et al.), pp. 220–;242. Guilford: New York.Google Scholar
Social Exclusion Unit (2004). Mental Health and Social Exclusion. Office of the Deputy Prime Minister: London.Google Scholar
Takizawa, T. (1993). Patients and their families in Japanese mental health. New Directions for Mental Health Services 60, 2534.CrossRefGoogle Scholar
Thornicroft, G. (2006). Shunned: Discrimination against People with Mental Illness. Oxford University Press: Oxford.Google Scholar
Thornicroft, G., Brohan, E., Rose, D., Sartorius, N. & Leese, M. (2009). Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey. Lancet 373, 408415.Google Scholar
Tylee, A. (1999). Depression in the community: physician and patient perspective. Journal of Clinical Psychiatry 60, Suppl. 7, 1216.Google Scholar
Wasow, M. (1983). Parental perspectives on chronic schizophrenia. Journal of Chronic Diseases 36, 337343.Google Scholar