Hostname: page-component-586b7cd67f-rcrh6 Total loading time: 0 Render date: 2024-11-23T22:38:50.723Z Has data issue: false hasContentIssue false
  • English
  • Français

The experience of carers of patients with severe mental illness: a comparison between London and Bologna

Published online by Cambridge University Press:  16 April 2020

Ilaria Tarricone ,
Morven Leese ,
George I. Szmukler ,
Mariano Bassi  and
Domenico Berardi
Ilaria Tarricone*
Affiliation:
Institute of Psychiatry “P. Ottonello”, University of Bologna, Viale Pepoli 5, 40100Bologna Italy
Morven Leese
Affiliation:
Institute of Psychiatry at The Maudsley, De Crespigny Park, King's College London, UK
George I. Szmukler
Affiliation:
Institute of Psychiatry at The Maudsley, De Crespigny Park, King's College London, UK
Mariano Bassi
Affiliation:
Mental Health Department, Bologna, Italy
Domenico Berardi
Affiliation:
Institute of Psychiatry “P. Ottonello”, University of Bologna, Viale Pepoli 5, 40100Bologna Italy
*
*Corresponding author. Tel./fax: +39 051 521 552. E-mail address:[email protected] (I. Tarricone).
Get access

Abstract

Purpose.

The experience of care giving inventory (ECI) is a self-reported measure of the caregiving experience as seen by the carer of a person with a serious mental illness. It comprises eight negative subscales and two positive subscales; positive and negative scores are obtained from these (ECI total positive and ECI total negative). This study aims to assess the validity and the reliability of the Italian version of the ECI and to compare the experience of carers in London and Bologna as measured by the ECI.

Method.

The sample consisted of 95 Bologna carers and 69 London carers of patients suffering from a functional psychotic disorder. The internal consistency of the Italian ECI and correlation between the Italian ECI total negative and the GHQ-12 (external validity) were estimated. Independent t-tests and chi-squared tests were used to compare sample characteristics and mean ECI scores. Regression analyses were used to control for confounders.

Results.

Internal consistency and validity of the Italian ECI were similar to these previously found. The Bologna caregivers had a higher ECI total negative than London carers; this difference was partially explained by worse patients' functioning and by a higher proportion of parents in Bologna. Bologna carers scored significantly lower on ECI total positive after controlling for relationship and patient functioning.

Conclusions.

The Italian ECI is a well-accepted and valid instrument to describe caregiving experiences. The similar scores in ECI total negative between London and Bologna underline a cross-cultural consistency of negative experience of caregiving and re-emphasise the importance of patients functioning in different cultural contexts. The differences found for ECI total positive suggest area for further research.

Keywords

Experience of caregivingPatient functioningCross-cultural differences
Type
Original article
Information
European Psychiatry , Volume 21 , Issue 2 , March 2006 , pp. 93 - 101
Copyright
Copyright © Elsevier SAS 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

Addington, J.Coldham, E.L.Jones, B.Ko, T.Addington, D.The first episode of psychosis: the experience of relatives. Acta Psychiatr. Scand. 2003;108(4):285–289.CrossRefGoogle ScholarPubMed
Addington, J.McCleery, A.Addington, D.Three-year outcome of family work in an early psychosis program. Schizoph Research 2005;79:107–116.CrossRefGoogle Scholar
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 3rd ed R (Third edition revised). Washington DC: APA; 1987.Google Scholar
Barrowclough, C.The family of the patient with schizophrenia. In: Maj, M.Leff, J.Sartorius, N.Okasha, A.Lopez-Ibor, J.J., editors Families and mental disorders: from burden to empowerment West Sussex, UK: John Wiley & Sons Ltd; 2005.Google Scholar
Boye, B.Bentsen, H.Ulstein, I.Notland, T.H.Lersbryggen, A.Lingjaerde, O.et al.Relatives' distress and patients' symptoms and behaviours: a prospective study of patients with schizophrenia and their relatives. Acta Psychiatr. Scand. 2001;104:42–50.CrossRefGoogle ScholarPubMed
Creer, C.Wing, J.K.Schizophrenia at home. National Schizophrenia fellowship. Surbiton; 1974.Google Scholar
Creer, C.Stuart, E.Wykes, T.The role of relatives. Wing, J.K., editor. Long-term community care: experience in London borough Psychol Med 1982. p. 29 [monogr Suppl 2].Google Scholar
Fadden, G.Bebbington, P.Kuippers, L.The burden of care: the impact of functional psychiatric illness on the patient’s family. Br. J. Psychiatry 1987;150:282–292.CrossRefGoogle ScholarPubMed
Falloon, I.R.H.Boyd, J.L.McGill, C.W.Razani, J.Moss, H.B.Gilderman, A.M.Family management in the prevention of exacerbations of schizophrenia: a controlled study. N. Engl. J. Med. 1982;306(24):1437–1440.CrossRefGoogle ScholarPubMed
Falloon, I.R.H.Jeffery, L.B.McGill, C.W.Williamnson, M.Razani, J.Moss, H.B.et al.Family management in the prevention of morbidity of schizophrenia. Clinical outcome of a 2 years longitudinal study. Arch. Gen. Psychiatry 1985;42(9):887–896.CrossRefGoogle Scholar
Folkman, S.Lazarus, R.S.If it changes it must be a process: study on emotion and coping during three stages of a college examination. J. Pers. Soc. Psychol. 1985;48(1):150–170.CrossRefGoogle Scholar
Goldberg, D.P.Williams, P.User’s Guide to the General Health Questionnaire. Windsor: NFER-Nelson; 1988.Google Scholar
Grad, J.Sainsbury, P.Mental illness and the family. Lancet 1963;9(1):544–547.CrossRefGoogle Scholar
Harvey, K.Burns, T.Fahey, T.Manley, C.Tattan, T.Relatives of patients with severe psychotic illness: factors that influence appraisal of caregiving and psychological distress. Soc. Psychiatry Psychiatr. Epidemiol. 2001;36(9):456–461.CrossRefGoogle ScholarPubMed
Harvey, K.Burns, T.Sedgwick, P.Higgitt, A.Creed, F.Fahy, T.Relatives of patients with severe psychotic disorders: factors that influence contact frequency. Report from the UK700 trial. Br. J. Psychiatry 2001;178:248–254.CrossRefGoogle ScholarPubMed
Harvey, K.Burns, T.Fiander, M.Huxley, P.Manley, C.Fahy, T.The effect of intensive case management on the relatives of patients with severe mental illness. Psychiatr. Serv. 2002;53(12):1580–1585.CrossRefGoogle ScholarPubMed
Hatfield, A.Psychological costs of schizophrenia to the family. Soc. Work 1978;23(5):355–359.Google Scholar
Hinrichsen, G.A.Lieberman, J.A.Family attributions and coping in the prediction of emotional adjustment in family members of patients with first-episode schizophrenia. Acta Psychiatr. Scand. 1999;100:359–366.CrossRefGoogle ScholarPubMed
Hoenig, J.Hamilton, M.W.Elderly psychiatric patients and the burden on the household. Psychiatr. Neurol. (Basel) 1966;152(5):281–293.CrossRefGoogle ScholarPubMed
Hogarty, G.E.Anderson, C.M.Reiss, D.J.Kornblith, S.J.Greenwald, D.P.Javna, C.D.et al.Family psychoeducation, social skills training and maintenance chemotherapy in the aftercare treatment of schizophrenia. One year effects of a controlled study on relapse and expressed emotions. Arch. Gen. Psychiatry 1986;43(7):633–642.CrossRefGoogle Scholar
Joyce, J.Leese, M.Szmukler, G.The experience of caregiving inventory: further evidence. Soc. Psychiatry Psychiatr. Epidemiol. 2000;35:185–189.CrossRefGoogle ScholarPubMed
Joyce, J.Leese, M.Kuipers, E.Szmukler, G.Harris, T.Staples, E.Evaluating a model of caregiving for people with psychosis. Soc. Psychiatry Psychiatr. Epidemiol. 2003;38(4):189–195.CrossRefGoogle Scholar
Lauber, C.Eichenberger, A.Luginbuhl, P.Keller, C.Rossler, W.Determinants of burden in caregivers of patients with exacerbating schizophrenia. Eur. Psychiatry 2003;18(6):285–289.CrossRefGoogle ScholarPubMed
Leff, J.Kuipers, L.Berkowitz, R.Eberlein-Fries, R.Sturgeon, D.A controlled trial of social interventions in the families of schizophrenic patients. Br. J. Psychiatry 1982;141:121–134.CrossRefGoogle ScholarPubMed
Leff, J.Kuipers, L.Berkowitz, R.Sturgeon, D.A controlled trial of social interventions in the families of schizophrenic patients: 2 years follow-up. Br. J. Psychiatry 1985;146:594–600.CrossRefGoogle Scholar
Lowyck, B.De Hert, M.Peeters, E.Wampers, M.Gilis, P.Peuskens, J.A study of the family burden of the 150 family members of schizophrenic patients. Eur. Psychiatry 2004;19:395–401.CrossRefGoogle ScholarPubMed
MacCarthy, B.Kuipers, L.Hurry, J.Harper, R.LeSage, A.Counselling the relatives of the long-term adult mentally ill. Evaluation of the impact on relatives and patients. Br. J. Psychiatry 1989;154:768–775.CrossRefGoogle Scholar
Magliano, L.Fadden, G.Madianos, M.Caldas de Almeida, J.M.Held, T.Guarneri, M.et al.Burden of the families of patients with schizophrenia: results of the BIOMED I study. Soc. Psychiatry Psychiatr. Epidemiol. 1998;33:405–412.CrossRefGoogle ScholarPubMed
Magliano, L.Fadden, G.Economou, M.Xavier, M.Held, T.Guarneri, M.et al.Social and clinical factors influencing the choice of coping strategies in relatives of patients with schizophrenia: results of the BIOMED I study. Soc. Psychiatry Psychiatr. Epidemiol. 1998;33:413–419.CrossRefGoogle ScholarPubMed
Magliano, L.Fadden, G.Economou, M.Held, T.Xavier, M.Guarneri, M.et al.Family burden and coping strategies in schizophrenia: 1 year follow-up data from the BIOMED I study. Soc. Psychiatry Psychiatr. Epidemiol. 2000;35:109–115.Google ScholarPubMed
Magliano, L.Marasco, C.Fiorillo, A.Malangone, C.Guarneri, M.Maj, M.the Working group of the Italian National Study on Families of Persons with Schizophrenia. The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy Acta Psychiatr. Scand. 2002;106:291–298.Google Scholar
Magliano, L.Fiorillo, A.Malangone, C.Marasco, C.Guarneri, M.Maj, M.National Mental Health Project Working Group.. The effect of social network on burden and pessimism in relatives of patients with schizophrenia Am. J. Orthopsychiatry 2003;73(3):302–309.Google Scholar
Makowska, Z.Merecz, D.Moscicka, A.Kolasa, W.The validity of general health questionnaires, GHQ-12 and GHQ-28, in mental health studies of working people. Int. J. Occup. Med. Environ. Health 2002;15(4):353–362.Google ScholarPubMed
Martens, L.Addington, J.The psychological well-being of family members of individuals with schizophrenia. Soc. Psychiatry Psychiatr. Epidemiol. 2001;36(3):128–133.CrossRefGoogle ScholarPubMed
Meijer, K.Schene, A.Maarten, K.Knudsen, H.C.Becker, T.Thornicroft, G.et al.Needs for care of patients with schizophrenia and the consequences for their informal caregivers. Results from the EPSILON multicentre study on schizophrenia. Soc. Psychiatry Psychiatr. Epidemiol. 2004;39:251–258.CrossRefGoogle ScholarPubMed
Morosini, P.L.Roncone, R.Veltro, F.Palomba, U.Casacchia, M.Routine assessment pool in psychiatry: the questionnaire of family attitudes and burden. Ital. J. Psychiatry Behav. Sci. 1991;1:95–101.Google Scholar
Ostman, M.Hansson, L.Appraisal of caregiving, burden and psychological distress in relatives of psychiatric inpatients. Eur. Psychiatry 2004;19:402–407.CrossRefGoogle ScholarPubMed
Raune, D.Kuipers, E.Bebbington, P.E.Expressed emotion at first-episode psychosis: investigating a carer appraisal model. Br. J. Psychiatry 2004;184:321–326.CrossRefGoogle ScholarPubMed
Reine, G.Lancon, C.Simeoni, M.C.Duplan, S.Auquier, P.Caregiver burden in relatives of persons with schizophrenia: an overview of measure instruments. Encephale 2003;29(2):137–147.Google ScholarPubMed
Scazufca, M.Kuipers, E.Links between expressed emotions and burden of care in relative of patients with schizophrenia. Br. J. Psychiatry 1996;168(5):580–587.CrossRefGoogle ScholarPubMed
Schene, A.H.Objective and subjective dimensions of family burden. Toward an integrative framework for research. Soc. Psychiatry Psychiatr. Epidemiol. 1990;25(6):289–297.CrossRefGoogle Scholar
Schene, A.H.Wijngaarden, B.Poelijoe, N.W.Gersons, B.P.R.The Utrecht comparative study on psychiatric day treatment and inpatient treatment. Acta Psychiatr. Scand. 1993;87:427–436.CrossRefGoogle ScholarPubMed
Schene, A.H.Tessler, R.C.Gamache, G.M.Wijngaarden, B.V.Measuring family or care-giver burden in severe mental illness: the instruments. Thornicroft, G.e Tansella, M., Mental Health Outcome Measures London: Gaskel; 2001.Google Scholar
Szmukler, G.I.From family burden to caregiving. Psychiatr. Bull. 1996;20:449–451.CrossRefGoogle Scholar
Szmukler, G.I.Burgess, P.Hermann, H.Benson, A.Colusa, S.Bloch, S.Caring for relatives with serious mental illness: the development of the experience of caregiving inventory. Soc. Psychiatry Psychiatr. Epidemiol. 1996;31(3–4):137–148.CrossRefGoogle ScholarPubMed
Szmukler, G.I.Herrman, H.Colusa, S.Benson, A.Bloch, S.A controlled trial of a counselling intervention for caregivers of relatives with schizophrenia. Soc. Psychiatry Psychiatr. Epidemiol. 1996;31(3–4):149–155.CrossRefGoogle ScholarPubMed
Szmukler, G.Wykes, T.Parkman, S.Care-giving and the impact on carers of a community mental health service. PRiSM Psychosis Study 6. Br. J. Psychiatry 1998;173:399–403.CrossRefGoogle ScholarPubMed
Szmukler, G.Kuipers, E.Joyce, J.Harris, T.Leese, M.Maphosa, W.et al.An exploratory randomised controlled trial of a support programme for carers of patients with a psychosis. Soc. Psychiatry Psychiatr. Epidemiol. 2003;38(8):411–418.CrossRefGoogle ScholarPubMed
Tennakoon, L.Fannon, D.Doku, V.O’Ceallaigh, S.Soni, W.Santamaria, M.et al.Experience of caregiving: relatives of people experiencing a first episode of psychosis. Br. J. Psychiatry 2000;177:529–533.CrossRefGoogle ScholarPubMed
Thornicroft, G.Strathdee, G.Phelan, M.Holloway, F.Wykes, T.al Dunn, G.Rationale and design. PRiSM Psychosis Study 1. Br. J. Psychiatry 1998;173:363–370.CrossRefGoogle Scholar
Thornicroft, G.Strathdee, G.Phelan, M.Holloway, F.Wykes, T.Dunn, G.et al.Rationale and design. PRiSM Psychosis Study I. Br. J. Psychiatry 1998;173:363–370.CrossRefGoogle ScholarPubMed
Treasure, J.Murphy, T.Szmukler, G.Todd, G.Gavan, K.Joyce, J.The experience of caregiving for severe mental illness: a comparison between anorexia nervosa and psychosis. Soc. Psychiatry Psychiatr. Epidemiol. 2001;36(7):343–347.CrossRefGoogle ScholarPubMed
Werneke, U.Goldberg, D.P.Yalcin, I.Ustun, B.T.The stability of the factor structure of the General Health Questionnaire. Psychol. Med. 2000;30(4):823–829.CrossRefGoogle ScholarPubMed
Wijngaarden, B.Schene, A.Koeter, M.Vazquez-Barquero, J.L.Knudsen, H.C.Lasalvia, A.McCrone, P.the EPSILON study group. Caregiving in schizophrenia: development, internal consistency and reliability of the involvement evaluation questionnaire—European version. Br. J. Psychiatry 2000;177:21–27.Google Scholar
Wijngaarden, B.Schene, A.Koeter, M.Becker, T.Knapp, M.Knudsen, H.C.Tansella, M.Thornicroft, G.Vazquez-Barquero, J.L.Lasalvia, A.Leese, M.the EPSILON study group People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving. Schizophr. Bull. 2003;29(3):573–586.CrossRefGoogle Scholar
World Health Organisation The ICD-10 classification of mental and behavioural disorders. Diagnostic criteria for research. Geneva: WHO; 1992.Google Scholar
Submit a response

Comments

No Comments have been published for this article.