Hostname: page-component-cd9895bd7-dzt6s Total loading time: 0 Render date: 2024-12-26T03:51:48.535Z Has data issue: false hasContentIssue false
  • English
  • Français

Knowledge and informative needs of patients with the diagnosis of schizophrenia, explored with focus group methods

Published online by Cambridge University Press:  18 May 2011

Monica Paccaloni ,
Tecla Pozzan ,
Michela Rimondini  and
Christa Zimmermann
Monica Paccaloni
Affiliation:
Dipartimento di Medicina e Sanità Pubblica, Sezione di Psichiatria e Psicologia Clinica, Università di Verona, Verona
Tecla Pozzan
Affiliation:
Dipartimento di Medicina e Sanità Pubblica, Sezione di Psichiatria e Psicologia Clinica, Università di Verona, Verona
Michela Rimondini
Affiliation:
Dipartimento di Medicina e Sanità Pubblica, Sezione di Psichiatria e Psicologia Clinica, Università di Verona, Verona
Christa Zimmermann*
Affiliation:
Dipartimento di Medicina e Sanità Pubblica, Sezione di Psichiatria e Psicologia Clinica, Università di Verona, Verona
*
Address for correspondence: Professor C. Zimmermann, Dipartimento di Medicina e Sanità Pubblica, Servizio di Psicologia Medica - Università di Verona, Piazzale L.A Scuro, 37134 Verona (Italy). Fax: +39-045-585.871 E-mail: christa.zimmermann@univr.it
Get access Rights & Permissions [Opens in a new window]

Summary

Aims – Psychiatric patients often are not informed about their diagnosis and their involvement in the decision making process is rare. Aim of the study was to explore the informative needs of patients with schizophrenia and the knowledge about their illness. Method – Three focus groups were conducted with 25 long-stay patients with the diagnosis of schizophrenia, attending the Mental Health Centre of the South-Verona Community-based Mental Health Service. The group discussions were audiotaped and transcribed. Results – The authors identified 18 different thematic categories which were used by two raters to classify all patient contributions. The interrater reliability was satisfactory. The qualitative analysis evidenced that patients have little knowledge about their illness. Patients had confuse and vague ideas on schizophrenia but their knowledge on drug names, dosages and side effects appeared precise and detailed. Several patients have looked for information in encyclopedias and medical dictionaries. Conclusion – The findings suggest a need of patients affected by schizophrenia for an information exchange with their psychiatrists that takes into account their informative needs, corrects wrong beliefs and actively involves them in therapeutic decisions.

Keywords

schizophreniapsychiatric patientscommunication of diagnosisinformation needsexpectationsdoctor-patient relationship.
Type
Original Articles
Information
Epidemiology and Psychiatric Sciences , Volume 15 , Issue 2 , June 2006 , pp. 128 - 137
Copyright
Copyright © Cambridge University Press 2006

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

BIBLIOGRAFIA

Angermeyer, M.C. & Klusmann, D. (1988). The causes of functional psychoses as seen by patients and the relatives. I. The patients' point of view. European Archives of Psychiatry and Neurological Science 238, 47–54.CrossRefGoogle Scholar
Balint, M.(1961). Medico, Paziente e Malattia. Feltrinelli Editore: Milano.Google Scholar
Birchwood, M. (2003). Pathways to emotional dysfunction in first-episode psychosis. British Journal of Psychiatry 182, 373–375.CrossRefGoogle ScholarPubMed
Blenkiron, P. (1998). Referral to a psychiatric clinic: what do patients expect? International Journal of Health Care Quality Assurance Incorporating Leadership in Health Service 11 (6–7), 188–192.Google ScholarPubMed
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 & Medicine 44, 681–692.CrossRefGoogle ScholarPubMed
Chien, W.T., Kam, C.W. & Lee, I.F. (2001). An assessment of the patients' needs in mental health education. Journal of Advanced Nursing 34, 304–311.CrossRefGoogle Scholar
Clafferty, R.A., McCabe, E. & Brown, K.W. (1999a). Are psychiatrists unwilling to tell patients with schizophrenia about their illness? In Royal College of Psychiatrist Annual Meeting Proceeding, London, pp. 193–194.Google Scholar
Clafferty, R.A., McCallum, S., McCabe, E. & Brown, K.W. (1999b). Do patients with schizophrenia want information about their illness? In Royal College of Psychiatrist Annual Meeting Proceeding, London, pp. 194–195.Google Scholar
Clafferty, R.A., McCabe, E. & Brown, K.W. (2000). Telling patients with schizophrenia their diagnosis. British Medical Journal 321, 384.Google ScholarPubMed
Clafferty, R.A., McCabe, E. & Brown, K.W. (2001). Conspiracy of silence? Telling patients with schizophrenia their diagnosis. Psychiatric Bulletin 25, 336–339.CrossRefGoogle Scholar
Clary, C., Dever, A. & Schweizer, E. (1992). Psychiatric inpatients' knowledge of medication at hospital discharge. Hospital & Community Psychiatry 43, 140–144.Google ScholarPubMed
Dell'Osso, L., Pini, S., Cassano, G.B., Mastrocique, C., Seckinger, R.A., Saettoni, M., Papasogli, A., Yale, S.A. & Amador, X.F. (2002). Insight into illness in patients with mania, mixed mania, bipolar depression and major depression with psychotic features. Bipolar Disorder 4, 315–322.CrossRefGoogle ScholarPubMed
Dice, L.R. (1945). Measures of the amount of the ecologie association between species. Ecology 26, 297–302.CrossRefGoogle Scholar
Fenton, W.S. (2003). Shared decision making: a model for the physician-patient relationship in the 21st century? Acta Psychiatrica Scandinavia 107, 401–402.CrossRefGoogle Scholar
Fisher, D.B. (1994). Health care reform based on an empowerment model of recovery by people with psychiatric disabilities. Hospital & Community Psychiatry 45, 913–915.Google Scholar
Fleischmann, H. (2003). What expectations do mental disordered people have about the treatment in a psychiatric hospital? Psychiatrische Praxis 30, 136–139.Google Scholar
Frankel, R.M. & Treger Hourigan, N. (2004). Thirty-five voices in search of an author: What focus groups reveal about patients' experiences in managed care settings. Communication & Medicine 1, 45–58.CrossRefGoogle ScholarPubMed
Green, R.S. & Gantt, A.B. (1987). Telling patients and families the psychiatric diagnosis: a survey of psychiatrists. Hospital & Community Psychiatry 38, 666–668.Google ScholarPubMed
Hamann, J., Leucht, S. & Kissling, W. (2003). Shared decision making in psychiatry. Acta Psychiatrica Scandinavica 107, 403–409.CrossRefGoogle ScholarPubMed
Hansson, L., Bjorkman, T. & Berglund, I. (1993). What is important in psychiatric inpatient care? Quality of care from the patient's perspective. Quality Assurance in Health Care 5, 41–47.CrossRefGoogle ScholarPubMed
Hayashi, N., Yamashina, M. & Igarashi, Y. (1999). Awareness of being a patient and its relevance to insight into illness in patients with schizophrenia. Comprehensive Psychiatry 50, 377–385.CrossRefGoogle Scholar
Holzinger, A., Kilian, R., Lindenbach, I., Petscheleit, A. & Angermeyer, M.C. (2003). Patients' and their relatives' causal explanations of schizophrenia. Social Psychiatry and Psychiatric Epidemiology 38, 155–162.CrossRefGoogle ScholarPubMed
Ilechuwu, S.T. (1988). Inter-relationships of beliefs about mental illness, psychiatric diagnosis and mental health care delivery among Africans. International Journal of Social Psychiatry 34, 200–206.CrossRefGoogle Scholar
Ishak, W.W. & Burt, T. (1998). Computer application in psychiatry: Role in patient care, education, research and communication. Cyber Psychology & Behavior 1, 147–150.CrossRefGoogle Scholar
Kappa, C.J.W. (1968). Nominal scale agreement with provision for scaled disagreement or partial credit. Psychological Bulletin 70, 2143–2220.Google Scholar
Kilkku, N., Munnukka, T. & 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.CrossRefGoogle ScholarPubMed
Landis, R.J. & Koch, G.G. (1977). The measurement of observer agreement for categorical data. Biometrics 33, 159–174.CrossRefGoogle ScholarPubMed
Lasalvia, A., Bonetto, C., Malchiodi, F., Parabiaghi, A., Tansella, M. & Ruggeri, M. (2005). Listening to patients' needs to improve their subjective quality of life. Psychological Medicine 11, 1655–1665.CrossRefGoogle Scholar
Luderer, H.J. (1989). Knowledge of the diagnosis and drug treatment of psychiatric patients. Nervenarzt 60, 213–219.Google ScholarPubMed
Luderer, H.J. & Böcker, F.M. (1993). Clinicians' information habits, patient' knowledge of diagnosis and etiological concepts in four different clinical samples. Acta Psychiatrica Scandinavica 88, 266–272.CrossRefGoogle ScholarPubMed
McCabe, R., Heath, C., Burns, T. & Priebe, S. (2002). Engagement of patients with psychosis in the consultation: conversation analytic study. British Medical Journal 325, 1148–1151.CrossRefGoogle ScholarPubMed
McDonald-Scott, P., Machizawa, S. & Satoh, H. (1992). Diagnostic disclosure: a tale in two cultures. Psychological Medicine 22, 147–157.CrossRefGoogle ScholarPubMed
Messari, S. & Hallam, R. (2003). CBT for psychosis: A qualitative analysis of clients experiences. British Journal of Clinical Psychology 42, 171–188.CrossRefGoogle ScholarPubMed
Molvaer, J., Hantzi, A. & Papadatos, Y. (1992). Psychotic patients' attributions for mental illness. British Journal of Clinical Psychology 31, 210–212.CrossRefGoogle ScholarPubMed
Morgan, D. (1997). Focus Groups as Qualitative Research (Qualitative research methods. Vol. 16). Sage Publications: Thousand Oaks, C.A.CrossRefGoogle Scholar
Morgan, D.G. (1999). Please see and advise: a qualitative study of patients' experiences of psychiatric outpatient care. Social Psychiatry & Psychiatric Epidemiology 34, 442–450.CrossRefGoogle ScholarPubMed
Moser, DJ., Schultz, S.K., Arndt, S., Benjamin, M.L., Heming, F.W., Brems, C.S., Paulsen, J.S., Appelbaum, P.S. & Andreasen, N.C. (2002). Capacity to provide informed consent for participation in schizophrenia and HIV research. American Journal of Psychiatry 159, 1201–1207.CrossRefGoogle ScholarPubMed
Mueser, K.T., Bellack, A.S., Wade, J.H., Sayers, S.L. & Rosenthal, C.K. (1992). An assessment of the educational needs of chronic psychiatric patients and their relatives. British Journal of Psychiatry 160, 674–680.CrossRefGoogle ScholarPubMed
Muller, M.J., Schlosser, R., Kapp-Stehen, G., Schanz, B. & Benkert, O. (2002). Patients satisfaction with psychiatrie treatment: comparison between an open and closed ward. Psychiatric Quality 73, 93–107.CrossRefGoogle ScholarPubMed
Noble, L.M., Douglas, B.C. & Newman, S.P. (1999). What do patients want and do we want to know? A review of patients' requests of psychiatric services. Acta Psychiatrica Scandinavica 100, 321–327.CrossRefGoogle Scholar
Noble, L.M., Douglas, B.C. & Newman, S.P. (2001). What do patients expect of psychiatrie services? A Systematic and critical review of empirical studies. Social Science & Medicine 52, 985–998.CrossRefGoogle ScholarPubMed
Ono, Y., Satsumi, Y., Kim, Y., Iwadate, T., Moriyama, K., Nakane, Y., Nakata, T., Okagami, K., Sakai, T., Sato, M., Someya, T., Tagagi, S., Ushijima, S., Yamauchi, K & Yoshimura, K. (1999). Schizophrenia: Is it the time to replace the term? Psychiatry and Clinical Neurosciences 53, 335–341.CrossRefGoogle ScholarPubMed
Paccaloni, M., Pozzan, T. & Zimmermann, C. (2004). Le informazioni ricevute e il coinvolgimento nella cura in psichiatria: cosa pensano i pazienti? Una revisione della letteratura. Epidemiologia e Psichiatria Sociale 13, 270–283.CrossRefGoogle Scholar
Paccaloni, M., Moretti, F. & Zimmermann, C. (2005). Le informazioni ricevute e il coinvolgimento nella cura in psichiatria: cosa pensano gli psichiatri? Una revisione della letteratura. Epidemiologia e Psichiatria Sociale 14, 198–216.CrossRefGoogle Scholar
Pallanti, S., Quercioli, L., Pazzagli, A., Rossi, A., Dell'Osso, L., Pini, S. & Cassano, G.B. (1999). Awareness of illness and subjective experience of cognitive complaints in patients with bipolar I and bipolar II disorder. American Journal of Psychiatry 156, 1094–1096.CrossRefGoogle ScholarPubMed
Pini, S., Cassano, G.B., Dell'Osso, L. & Amador, X.F. (2001). Insight into illness in schizophrenia, schizoaffective disorder, mood disorders with psychotic features. American Journal of Psychiatry 158, 122–125.CrossRefGoogle ScholarPubMed
Retolaza, A. & Grandes, G. (2003). Expectations and satisfaction in mental health center users. Actas Espanola de Psiquiatria 31, 171–176.Google ScholarPubMed
Roberts, L.W., Warner, T.D., Brody, J.L., Roberts, B., Lauriello, J. & Lyketsos, C. (2002). Patient and psychiatrist ratings of hypothetical schizophrenia research protocols: assessment of harm potential and factors influencing participation decisions. American Journal of Psychiatry 159, 573–584.CrossRefGoogle ScholarPubMed
Sartorius, N. (1998). Stigma: what can psychiatrists do about it? Lancet, 325, 1058–1059.CrossRefGoogle Scholar
Schulze, B. & Angermeyer, M.C. (2003). Subjective experiences of stigma. A focus group study of schizophrenic patients, their relatives and mental health professionals. Social Science & Medicine 56, 299–312.CrossRefGoogle ScholarPubMed
Shergill, S.S., Barker, D. & Greenberg, M. (1998). Communication of psychiatric diagnosis. Social Psychiatry & Psychiatric Epidemiology 33, 32–38.Google ScholarPubMed
Shooter, M. (2003). The patient's perspective on medicines in mental illness. Drug treatment is only a part of what the patients needs. British Medical Journal 327, 824–826.CrossRefGoogle Scholar
Slingsby, B.T. (2004). Decision-making models in Japanese psychiatry: Transitions from passive to active patterns. Social Science & Medicine 59, 83–91.CrossRefGoogle ScholarPubMed
Tarrier, N. & Barrowclough, C. (2003). Professional attitudes to psychiatric patients: a time for change and an end to medical paternalism. Epidemiologia e Psichiatria Sociale 12, 238–241.CrossRefGoogle Scholar
Tarrier, N., Beckett, R., Harwood, S., Baker, A., Yusupoff, L. & Ugarterburu, I. (1993). A trial of two cognitive-behavioral methods of treating drug-resistant residual psychotic symptoms in schizophrenic patients: I. Outcome. British Journal of Psychiatry 162, 524–532.CrossRefGoogle ScholarPubMed
Tempier, R. (1996). Long-term psychiatric patients' knowledge about their medication. Psychiatric Services 47, 1385–1387.Google ScholarPubMed
Thornicroft, G. & Tansella, M. (2005). Growing recognition of the importance of service user involvement in mental health service planning and evaluation. Epidemiologia e Psichiatria Sociale 14, 1–3.CrossRefGoogle ScholarPubMed
Üçok, A., Polat, A., Sartorius, N., Erkoç, S. & Atakli, C. (2004). Attitudes of psychiatrists toward patients with schizophrenia. Psychiatry and Clinical Neurosciences 58, 89–91.CrossRefGoogle ScholarPubMed
Warner, R. (2005). Problems with early and very early intervention in psychosis. British Journal of Psychiatry, Suppl., 48, 104–107.CrossRefGoogle ScholarPubMed
Wetterling, I. & Tessmann, G. (2000). Patient education regarding the diagnosis. Results of a survey of psychiatric patients. Psychiatrische Praxis 27, 6–10.Google ScholarPubMed
Wykurz, G. & Kelly, D. (2002). Developing the role of patients as teachers: literature review. British Medical Journal 325, 818–821.CrossRefGoogle ScholarPubMed
Zammuner, V.L. (2003). I Focus Group. Il Mulino: Bologna.Google Scholar
Zanieri, G., Buizza, C., Ravelli, L., Bigotti, S., Porteri, C., Pioli, R. & Saltini, A. (2003). Conoscenza del trattamento farmacologico da parte di pazienti con disturbi psichici. Recenti Progressi in Medicina 94, 387–390.Google Scholar