Abstract
Purpose
Further cross-cultural comparisons are needed on caregiving consequences of chronic psychotic disorders. The EPSILON study (European Psychiatric Services: Inputs Linked to Outcome Domains and Needs) involved five European countries, but not Portugal. We aimed to analyse the impact of severe mental illness in a Portuguese sample and to provide support to comparisons with some of the EPSILON results, focusing on the north-European Dutch centre.
Methods
We studied 108 caregiver-patient dyads by a consecutive sampling of people with schizophrenia-spectrum disorders in psychiatric outpatient services. Relatives’ assessments included the Involvement Evaluation Questionnaire, European version (IEQ), the 12-item General Health Questionnaire (GHQ-12); the loss, stigma and positive aspects’ subscales of the Experience of Caregiving Inventory, and the Social Network and Family Coping Questionnaires. Patients were assessed regarding symptoms, disability and global functioning.
Results
Caregiving rewards and negative consequences co-existed. On the IEQ, 49.1 % reported negative consequences and rank order of domain scores was worrying > urging > tension > supervision. More than one-third of caregivers were psychologically distressed according to GHQ screenings. Involvement Evaluation Questionnaire scores were correlated with caregivers’ distress, stigma, loss, patient’s involvement and other ways of coping, and patients’ variables. Some of these failed to be included in a regression model.
Conclusions
Many of these Portuguese caregivers were at risk regarding burden and psychological distress. In comparison with other European samples, caregiving arrangements and assessments were typical of Mediterranean countries, as Italy or Spain. All IEQ scores were significantly higher than those in the Netherlands. On account of small numbers, caution is needed in the interpretation of associations.
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References
Kuipers E, Bebbington P (2005) Research on burden and coping strategies in families of people with mental disorders: problems and perspectives. In: Sartorius N, Leff J, López-Ibor JJ, Maj M, Okasha A (eds) Families and mental disorders: from burden to empowerment. Wiley, Chichester, pp 217–234
Joyce J, Leese M, Kuipers E, Szmukler G, Harris T, Staples E (2003) Evaluating a model of caregiving for people with psychosis. Soc Psychiatry Psychiatr Epidemiol 38:189–195. doi:10.1007/s00127-003-0618-3
Magliano L, Fadden G, Madianos M, de Almeida JM, Held T, Guarneri M et al (1998) Burden on the families of patients with schizophrenia: results of the BIOMED I study. Soc Psychiatry Psychiatr Epidemiol 33(9):405–412
Magliano L, Fadden G, Economou M, Held T, Xavier M, Guarneri M et al (2000) Family burden and coping strategies in schizophrenia: 1-year follow-up data from the BIOMED I study. Soc Psychiatry Psychiatr Epidemiol 35(3):109–115
van Wijngaarden B (2003) Consequences for caregivers of patients with severe mental illness: The development of the Involvement Evaluation Questionnaire. Doctoral thesis; University of Amsterdam, Amsterdam
Tang VW, Leung SK, Lam LC (2008) Clinical correlates of the caregiving experience for Chinese caregivers of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 43(9):720–726. doi:10.1007/s00127-008-0357-6
Hjärtag F, Helldin L, Karilampi U, Norlander T (2010) Illness-related components for the family burden of relatives to patients with psychotic illness. Soc Psychiatry Psychiatr Epidemiol 45(2):275–283. doi:10.1007/s00127-009-0065-x
Hadrys T, Adamowski T, Kiejna A (2010) Mental disorder in Polish families: is diagnosis a predictor of caregiver’s burden? Soc Psychiatry Psychiatr Epidemiol. doi:10.1007/s00127-010-0200-8
Tarricone I, Leese M, Szmukler GI, Bassi M, Berardi D (2006) The experience of carers of patients with severe mental illness: a comparison between London and Bologna. Eur Psychiatry 21(2):93–101. doi:10.1016/j.eurpsy.2005.09.012
Ministry of Health Portugal and WHO-Department of Mental Health and Substance Abuse (2009). Portugal: effective and humane mental health treatment and care for all. The WHO country summary series. World Health Organization, Geneva. http://www.who.int/mental_health/policy/country/Portugal_CountrySummaryFINAL_MOH.pdf. Accessed 16 Jan 2011
Pereira MG, de Almeida JM (1999) The repercussions of mental disease in the family. Acta Med Port 12(4–6):161–168
Magliano L, Fadden G, Economou M, Xavier M, Held T, Guarneri M et al (1998) 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 33(9):413–419
Becker T, Knapp M, Knudsen HC, Schene A, Tansella M, Thornicroft G et al (1999) The EPSILON study of schizophrenia in five European countries. Design and methodology for standardising outcome measures and comparing patterns of care and service costs. Br J Psychiatry 175:514–521
van Wijngaarden B, Schene AH, Koeter M, Vazquez-Barquero JL, Knudsen HC, Lasalvia A et al (2000) Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire-European Version. EPSILON Study 4. European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. Br J Psychiatry Suppl 39:s21–s27
van Wijngaarden B, Schene A, Koeter M, Becker T, Knapp M, Knudsen HC et al (2003) People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving. Schizophr Bull 29(3):573–586
van Wijngaarden B, Schene AH (2010) Measuring family of carer burden in severe mental illness: the instruments. In: Tansella M, Thornicroft G (eds) Mental health outcome measures, 3rd edn. Gaskell, London, pp 116–135
Gonçalves-Pereira M, Papoila A, Xavier M (2009) The FAPS study on severe mental illness: views on the implementation of psychoeducational family work in Portuguese settings. Eur Psychiatry 24(1):S232–S232. doi:10.1016/S0924-9338(09)70465-1
Gonçalves-Pereira M, van Wijngaarden B, Xavier M, Papoila AL, Caldas de Almeida JM, Schene AH (2012) Caregiving in severe mental illness: the psychometric properties of the Involvement Evaluation Questionnaire in Portugal. Ann Gen Psychiatry 11:8. doi:10.1186/1744-859X-11-8
Goldberg D, Williams P (1988) A user’s guide to the General Health Questionnaire: GHQ. GL assessment, London
Goldberg DP, Gater R, Sartorius N, Ustun TB, Piccinelli M, Gureje O et al (1997) The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychol Med 27(1):191–197
Gonçalves-Pereira M, Carmo I, da Silva JA, Papoila AL, Mateos R, Zarit SH (2010) Caregiving experiences and knowledge about dementia in Portuguese clinical outpatient settings. Int Psychogeriatr 22(2):270–280. doi:10.1017/S1041610209991050
Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S (1996) Caring for relatives with serious mental illness: the development of the experience of caregiving inventory. Soc Psychiatry Psychiatr Epidemiol 31(3–4):137–148
Coromina M, Gonçalves-Pereira M, Bouça D, Sampaio D (2006) Psychological distress in mothers of anorexia nervosa patients attending a Portuguese clinical outpatient practice. In: Sass H, Robert PH (eds) Proceedings of the XIV Congress of the Association of European Psychiatrists. Eur Psychiatry, Elsevier
Campos MLV (2008) Os caminhos das experiências positivas e negativas na prestação de cuidados informais na esquizofrenia. Doctoral thesis; University of Oporto, Oporto
Ventura J, Green MF, Shaner A, Liberman RP (1993) Training and quality assurance with the Brief Psychiatric Rating Scale: ‘the drift busters’. Int J Methods Psychiatr Res 3:221–244
Ruggeri M, Koeter M, Schene A, Bonetto C, Vazquez-Barquero JL, Becker T et al (2005) Factor solution of the BPRS-expanded version in schizophrenic outpatients living in five European countries. Schizophr Res 75(1):107–117. doi:10.1016/j.schres.2004.05.017
Lasalvia A, Bonetto C, Cristofalo D, Tansella M, Ruggeri M (2007) Predicting clinical and social outcome of patients attending ‘real world’ mental health services: a 6-year multi-wave follow-up study. Acta Psychiatr Scand Suppl 437:16–30. doi:10.1111/j.1600-0447.2007.01090.x
World Health Organization (1998) Psychiatric disability assessment schedule, 2nd edn. World Health Organization, Geneva
Endicott J, Spitzer RL, Fleiss JL, Cohen J (1976) The global assessment scale. A procedure for measuring overall severity of psychiatric disturbance. Arch Gen Psychiatry 33(6):766–771
Graffar M (1956) Une méthode de classification sociale—échantillons de population. Courrier 6:445–459
Parabiaghi A, Lasalvia A, Bonetto C, Cristofalo D, Marrella G, Tansella M et al (2007) Predictors of changes in caregiving burden in people with schizophrenia: a 3-year follow-up study in a community mental health service. Acta Psychiatr Scand Suppl 437:66–76. doi:10.1111/j.1600-0447.2007.01094.x
Schulze B, Rössler W (2005) Caregiver burden in mental illness: review of measurement, findings and interventions in 2004–2005. Curr Opin Psychiatry 18:684–691
Magaña SM, Ramírez García JI, Hernández MG, Cortez R (2007) Psychological distress among latino family caregivers of adults with schizophrenia: the roles of burden and stigma. Psychiatr Serv 58:378–384. doi:10.1176/appi.ps.58.3.378
Schene AH, van Wijngaarden B, Koeter MW (1998) Family caregiving in schizophrenia: domains and distress. Schizophr Bull 24(4):609–618
Szmukler GI, Wykes T, Parkman S (1998) Care-giving and the impact on carers of a community mental health service. PRiSM Psychosis Study. 6. Br J Psychiatry 173:399–403
Mitsonis C, Voussoura E, Dimopolous N, Psarra V, Kararizou E, Latzouraki E, Zervas I, Katsanou MN (2010) Factors associated with caregiver psychological distress in chronic schizophrenia. Soc Psychiatry Psychiatr Epidemiol. doi:10.1007/s00127-010-0325-9
Acknowledgments
We thank all patients and caregivers for participating in our study. The Portuguese translation of the ECI was developed in 2005 by the first author. Prof. George Szmukler kindly checked the ECI back-translation by R.Rogers and provided scoring instructions. Members of the FAPS Workgroup contributing to data collection: A. L. Alves, A. Cardoso, A. Martinho, A. Ramires, C. Conceição, C. Janeiro, I. Landeiro, J. A. Silva, J. Grácio, M. Gomes, M. Pereira, N. Ventura, S. Andrade, T. Ribeiro. The FAPS study was supported by a clinical research grant from the Portuguese AstraZeneca Foundation, Fundação AstraZeneca Portugal (2005).
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Gonçalves-Pereira, M., Xavier, M., van Wijngaarden, B. et al. Impact of psychosis on Portuguese caregivers: a cross-cultural exploration of burden, distress, positive aspects and clinical-functional correlates. Soc Psychiatry Psychiatr Epidemiol 48, 325–335 (2013). https://doi.org/10.1007/s00127-012-0516-7
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DOI: https://doi.org/10.1007/s00127-012-0516-7