‘I’m not insane, my mother had me tested’: the risk and benefits of being labelled ‘at-risk’ for psychosis

References

• Agerbo, E., et al., 2004. Marital and labor market status in the long run in schizophrenia. Archives of general psychiatry, 61, 28–33.
   PubMed Web of Science ®Google Scholar
• Arango, C., 2011. Attenuated psychotic symptoms syndrome: how it may affect child and adolescent psychiatry. European child & adolescent psychiatry, 20, 67–70.
   PubMed Web of Science ®Google Scholar
• Bechdolf, A., et al., 2012. Rationale and first results of developing at-risk (prodromal) criteria for bipolar disorder. Current pharmaceutical design, 18, 358–375.
   PubMed Web of Science ®Google Scholar
• Bentall, R.P. and Morrison, A.P., 2002. More harm than good: the case against using antipsychotic drugs to prevent severe mental illness. Journal of mental health, 11, 351–356.
   Google Scholar
• Berger, G., et al., 2007. Neuroprotection in emerging psychotic disorders. Early intervention in psychiatry, 1, 114–127.
   Web of Science ®Google Scholar
• Boydell, K.M., Gladstone, B.M., and Volpe, T., 2006. Understanding help seeking delay in the prodrome to first episode psychosis: a secondary analysis of the perspectives of young people. Psychiatric rehabilitation journal, 30, 54–60.
   PubMed Web of Science ®Google Scholar
• Burton-Jeangros, C., et al., 2013. Between tolerable uncertainty and unacceptable risks: how health professionals and pregnant women think about the probabilities generated by prenatal screening. Health, risk and society, 15 (2), 144–161.
   Web of Science ®Google Scholar
• Bury, M., 1982. Chronic illness as biographical disruption. Sociology of health & illness, 4, 167–182.
   PubMedGoogle Scholar
• Carpenter, W.T. and Tandon, R. 2013. Psychotic disorders in DSM-5: summary of changes. Asian journal of psychiatry, Epub ahead of print. Available from: http://www.sciencedirect.com/science/article/pii/S1876201813000981#FCANote [Accessed 2 May 2013].
   Google Scholar
• Charmaz, K., 1983. Loss of self: a fundamental form of suffering in the chronically ill. Sociology of health & illness, 5, 168–195.
   PubMedGoogle Scholar
• Corcoran, C., Malaspina, D., and Hercher, L., 2005. Prodromal interventions for schizophrenia vulnerability: the risks of being ‘at risk’. Schizophrenia research, 73, 173–184.
   PubMed Web of Science ®Google Scholar
• Corcoran, C.M., First, M.B., and Cornblatt, B., 2010. The psychosis risk syndrome and its proposed inclusion in the DSM-V: a risk-benefit analysis. Schizophrenia research, 120, 16–22.
   PubMed Web of Science ®Google Scholar
• Dudley, R., et al., 2009. What do people with psychosis think caused their psychosis? A Q methodology. Behavioural and cognitive psychotherapy, 37, 11–24.
   PubMed Web of Science ®Google Scholar
• Fleischhaker, C., et al., 2005. Long-term course of adolescent schizophrenia. Schizophrenia bulletin, 31, 769–780.
   PubMed Web of Science ®Google Scholar
• Fraguas, D., et al., 2008. Metabolic and hormonal side effects in children and adolescents treated with second-generation antipsychotics. Journal of clinical psychiatry, 69, 1165–1175.
   Google Scholar
• Freidson, E., 1972. Profession of medicine: a study of the sociology of applied knowledge. New York: Dodd, Mead and Company.
   Google Scholar
• Giddens, A., 1994. Living in a post-traditional society. In: U. Beck, et al., eds. Reflexive modernization: politics, tradition and aesthetics in the modern social order. Stanford, CA: Stanford University Press, 56–109.
   Google Scholar
• Harris, E. and Barraclough, B., 1998. Excess mortality of mental disorder. British journal of psychiatry, 173, 11–53.
   PubMed Web of Science ®Google Scholar
• Heinssen, R.K., et al., 2001. Informed consent in early psychosis research: national institute of mental health workshop, November 15, 2000. Schizophrenia bulletin, 27, 571–583.
   PubMedGoogle Scholar
• Hercher, L. and Bruenner, G., 2008. Living with a child at risk for psychotic illness: the experience of parents coping with 22q11 deletion syndrome: an exploratory study. American journal of medical genetics part A, 146A, 2355–2360.
   PubMed Web of Science ®Google Scholar
• Heyman, B., 2004. Risk and mental health. Health, risk & society, 6 (4), 297–301.
   Web of Science ®Google Scholar
• Heyman, B., Alaszewski, A., and Brown, P., 2012. Health care through the ‘lens of risk’ and the categorisation of health risks – an editorial. Health, risk & society, 14, 107–115.
   Web of Science ®Google Scholar
• Holmberg, C. and Parascandola, M., 2010. Individualised risk estimation and the nature of prevention. Health, risk & society, 12 (5), 441–452.
   Web of Science ®Google Scholar
• Holmes, C. and Warelow, P., 1999. Implementing psychiatry as risk management: DSM-IV as a postmodern taxonomy. Health, risk & society, 1 (2), 167–178.
   Google Scholar
• Jutel, A., 2009. Sociology of diagnosis: a preliminary review. Sociology of health & illness, 31, 278–299.
   PubMed Web of Science ®Google Scholar
• Jutel, A., 2011. Putting a name to it: diagnosis in contemporary society. Baltimore, MD: Johns Hopkins University Press.
   Google Scholar
• Jutel, A. and Nettleton, S., 2011. Towards a sociology of diagnosis: reflections and opportunities. Social science & medicine, 73, 793–800.
   PubMed Web of Science ®Google Scholar
• Kaymaz, N. and Van Os, J., 2010. DSM5 and the ‘psychosis risk syndrome’: Babylonic confusion. Psychosis, 2, 100–103.
   Web of Science ®Google Scholar
• Kilkku, N., Munnukka, T., and Lehtinen, K., 2003. From information to knowledge: the meaning of information-giving to patients who had experienced first-episode psychosis. Journal of psychiatric and mental health nursing, 10, 57–64.
   PubMedGoogle Scholar
• Knight, M.T.D., Wykes, T., and Hayward, P., 2003. People don’t understand’: an investigation of stigma in schizophrenia using interpretative phenomenological analysis (IPA). Journal of mental health, 12, 209–222.
   Google Scholar
• Koivisto, K., Janhonen, S., and Vaisanen, L., 2004. Patients’ experiences of being helped in an inpatient setting. Journal of psychiatric & mental health nursing, 11, 268–275.
   PubMedGoogle Scholar
• Langan, J., 2010. Challenging assumptions about risk factors and the role of screening for violence risk in the field of mental health. Health, risk & society, 12, 85–100.
   Web of Science ®Google Scholar
• Leff, J., et al., 1992. The international pilot study of schizophrenia: five-year follow-up findings. Psychological medicine, 22, 131–145.
   PubMed Web of Science ®Google Scholar
• Manning, N., 2000. Psychiatric diagnosis under conditions of uncertainty: personality disorder, science and professional legitimacy. Sociology of health & illness, 22, 621–639.
   Web of Science ®Google Scholar
• Marwaha, S. and Johnson, S., 2004. Schizophrenia and employment: a review. Social psychiatry and psychiatric epidemiology, 39, 337–349.
   PubMed Web of Science ®Google Scholar
• Mason, O., et al., 2004. Risk factors for transition to first episode psychosis among individuals with ‘at-risk mental states. Schizophrenia research, 71, 227–237.
   PubMed Web of Science ®Google Scholar
• Mason, P., et al., 1995. Characteristics of outcome in schizophrenia at 13 years. British journal of psychiatry, 167, 596–603.
   PubMed Web of Science ®Google Scholar
• McCrone, P., et al., 2008. Paying the price: the cost of mental health care in England to 2026. London: King’s Fund.
   Google Scholar
• McGlashan, T., 2005. Early detection and intervention in psychosis: an ethical paradigm shift. British journal of psychiatry, 187, s113–s115.
   Web of Science ®Google Scholar
• McGlashan, T., et al., 2006. Randomized, double-blind trial of olanzapine versus placebo in patients prodromally symptomatic for psychosis. American journal of psychiatry, 163, 790–799.
   PubMed Web of Science ®Google Scholar
• McGlashan, T.H., et al., 2007. Recruitment and treatment practices for help-seeking ‘prodromal’ patients. Schizophrenia bulletin, 33, 715–726.
   PubMed Web of Science ®Google Scholar
• McGorry, P.D., et al., 1996. EPPIC: an evolving system of early detection and optimal management. Schizophrenia bulletin, 22, 305–326.
   PubMed Web of Science ®Google Scholar
• McGorry, P.D. and Singh, B.S., 1995. Schizophrenia: risk and possibility. In: R.B. Burrows, ed. Handbook of studies on preventive psychiatry. Amsterdam: Elsevier, 491–514.
   Google Scholar
• McGuire, J., 2004. Minimising harm in violence risk assessment: practical solutions to ethical problems? Health, risk & society, 6, 327–345.
   Web of Science ®Google Scholar
• Milne, A., 2010. Dementia screening and early diagnosis: the case for and against. Health, risk and society, 12 (1), 65–76.
   Web of Science ®Google Scholar
• Moses, T., 2009. Self-labeling and its effects among adolescents diagnosed with mental disorders. Social science and medicine, 68, 570–578.
   PubMed Web of Science ®Google Scholar
• Muhlbauer, S.A., 2002. Navigating the storm of mental illness: phases in the family’s journey. Qualitative health research, 12, 1076–1092.
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Clinical Excellence, 2008. NICE implementation uptake report: atypical antipsychotic drugs for the treatment of schizophrenia. London: NICE.
   Google Scholar
• Nelson, B. and Yung, A., 2011. Should a risk syndrome for first episode psychosis be included in the DSM-5? Current Opinion in Psychiatry, 24, 128–133.
   PubMed Web of Science ®Google Scholar
• Pantelis, C., et al., 2003. Neuroanatomical abnormalities before and after onset of psychosis: a cross-sectional and longitudinal MRI comparison. Lancet, 361, 281–288.
   PubMed Web of Science ®Google Scholar
• Parsons, T., 1951. Illness and the role of the physician: a sociological perspective. American journal of orthopsychiatry, 21, 452–460.
   PubMed Web of Science ®Google Scholar
• Perkins, D.O., et al., 2005. Relationship between duration of untreated psychosis and outcome in first-episode schizophrenia: a critical review and meta-analysis. American journal of psychiatry, 162, 1785–1804.
   PubMed Web of Science ®Google Scholar
• Portway, S.M. and Johnson, B., 2005. Do you know I have Asperger’s syndrome? Risks of a non-obvious disability. Health, risk & society, 7, 73–83.
   Web of Science ®Google Scholar
• Ruhrmann, S., et al., 2007. Acute effects of treatment for prodromal symptoms for people putatively in a late initial prodromal state of psychosis. British journal of psychiatry, 191, s88–s95.
   Web of Science ®Google Scholar
• Ruhrmann, S., Schultze-Lutter, F., and Klosterkötter, J., 2010. Probably at-risk, but certainly ill-advocating the introduction of a psychosis spectrum disorder in DSM-V. Schizophrenia research, 120, 23–37.
   PubMed Web of Science ®Google Scholar
• Salter, C.I., et al., 2011. Risk, significance and biomedicalisation of a new population: older women’s experience of osteoporosis screening. Social science & medicine, 73, 808–815.
   PubMed Web of Science ®Google Scholar
• Schmidt, M., Blanz, B., and Dippe, A., 1995. Course of patients diagnosed as having schizophrenia during first episode occurring under age 18 years. European archives of psychiatry and clinical neuroscience, 245, 93–100.
   PubMed Web of Science ®Google Scholar
• Simon, A.E. and Umbricht, D., 2010. High remission rates from an initial ultra-high risk state for psychosis. Schizophrenia research, 116, 168–172.
   PubMed Web of Science ®Google Scholar
• Simpson, E.L. and House, A., 2002. Involving users in the delivery and evaluation of mental health services: systematic review. British medical journal, 325 (7375), 1265.
   PubMed Web of Science ®Google Scholar
• Sin, J., Moone, N., and Harris, P., 2008. Siblings of individuals with first-episode psychosis: understanding their experiences and needs. Journal of psychosocial nursing and mental health services, 46, 33–40.
   PubMed Web of Science ®Google Scholar
• Smith, J.A., Flowers, P., and Larkin, M., 2009. Interpretative phenomenological analysis: theory, method and research. London: SAGE.
   Google Scholar
• Sullivan, H., 1927/1994. The onset of schizophrenia. American journal of psychiatry, 151, 135–139.
   Google Scholar
• Warner, J. and Gabe, J., 2004. Risk and liminality in mental health social work. Health, risk & society, 6, 387–399.
   Web of Science ®Google Scholar
• Welsh, P., 2013. The at-risk mental state (ARMS) for Psychosis in children and adolescents. Thesis (PhD). Durham University. Available from: http://etheses.dur.ac.uk/6935/
   Google Scholar
• Welsh, P. and Tiffin, P.A., 2012. Observations of a small sample of adolescents experiencing an at-risk mental state (ARMS) for psychosis. Schizophrenia bulletin, 38 (2), 215–218.
   PubMed Web of Science ®Google Scholar
• Welsh, P. and Tiffin, P.A. 2013. The ‘At-Risk Mental State’ for psychosis in adolescents: clinical presentation, transition and remission. Child psychiatry & human development. Epub ahead of print. Available from: http://link.springer.com/article/10.1007%2Fs10578-013-0380-z [Accessed 2 May 2013].
   PubMedGoogle Scholar
• Wexler, N., 1995. Presymptomatic testing for genetic diseases. In: G. Pence, ed. Classic cases in medical ethics. 2nd ed. New York: McGraw-Hill, 384–412.
   Google Scholar
• Williams, G., 1984. The genesis of chronic illness: narrative re-construction. Sociology of health & illness, 6, 175–200.
   PubMed Web of Science ®Google Scholar
• Wisdom, J.P. and Green, C.A., 2004. ‘Being in a funk’: teens’ efforts to understand their depressive experiences. Qualitative health research, 14, 1227–1238.
   PubMed Web of Science ®Google Scholar
• Woods, S.W., et al., 2007. Aripiprazole in the treatment of the psychosis prodrome: an open-label pilot study. British journal of psychiatry, 191, s96–s101.
   Web of Science ®Google Scholar
• Wright, A., Jorm, A.F., and Mackinnon, A.J., 2011. Labeling of mental disorders and stigma in young people. Social science & medicine, 73, 498–506.
   PubMed Web of Science ®Google Scholar
• Yang, L.H., et al., 2010. Potential stigma associated with inclusion of the psychosis risk syndrome in the DSM-V: an empirical question. Schizophrenia research, 120, 42–48.
   PubMed Web of Science ®Google Scholar
• Yung, A.R., et al., 2003. Psychosis prediction: 12-month follow up of a high-risk (‘prodromal’) group. Schizophrenia research, 60, 21–32.
   PubMed Web of Science ®Google Scholar
• Yung, A.R., et al., 2007. Declining transition rate in ultra high risk (prodromal) services: dilution or reduction of risk? Schizophrenia bulletin, 33, 673–681.
   PubMed Web of Science ®Google Scholar
• Yung, A.R., et al., 2008. Validation of ‘prodromal’ criteria to detect individuals at ultra high risk of psychosis: 2 year follow-up. Schizophrenia research, 105, 10–17.
   PubMed Web of Science ®Google Scholar
• Ziermans, T.B., et al., 2011. Transition and remission in adolescents at ultra-high risk for psychosis. Schizophrenia research, 126, 58–64.
   PubMed Web of Science ®Google Scholar