Background: Caregiver burden in mental illness is believed to differ between ethnic groups, but few studies have examined this in schizophrenia in the UK.
Aim: To measure burden in British North Indian Sikh and white British parents with a son or daughter with established schizophrenia managed in outpatient care.
Method: A cross-cultural cohort study measuring family factors, patient psychopathology and levels of burden and distress.
Results: Overall levels of burden were low with no significant differences between the groups. Burden subscale scores showed Indian parents were more affected by psychotic behaviours than white parents. The groups also differed on several sociodemographic variables.
Conclusion: In stabilized community patients, the overall extent of burden experienced by both Indian and white parents is low and comparable. However, Indian parents were more burdened by psychotic behaviours. This may be a result of co-residence as Indian patients are more likely to live with their families. Social and economic factors in the country of residence and levels of acculturation may also influence levels of burden and the illness behaviours found most bothersome by parents.
Barrowclough, C. & Parle, M. ( 1997) Appraisal, psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia. British Journal of Psychiatry, 171, 26-30.
2.
Bibou-Nakou, I., Dikaiou, M. & Bairactaris, C. ( 1997) Psychosocial dimensions of family burden among two groups of carers looking after psychiatric patients. Social Psychiatry and Psychiatric Epidemiology, 32(2), 104-108.
3.
Bulger, M.W., Wandersman, A. & Goldman, C.R. ( 1993) Burdens and gratifications of caregiving: Appraisal of parental care of adults with schizophrenia. American Journal of Orthopsychiatry, 63(2), 255-265.
4.
Cohen, J. ( 1992) A power primer. Psychological Bulletin , 112(1), 155-159.
5.
Connor, H., Tyers, C., Davis, S. & Tackey, N.D. ( 2003) Minority Ethnic Students in Higher Education: Interim Report. London: Office of National Statistics.
6.
Department for Education and Skills (2006) National Curriculum Assessment, GCSE and Equivalent Attainment and Post-16 Attainment by Pupil Characteristics in England 2005/06 (Provisional). London: Office of National Statistics.
7.
Foldemo, A., Gullberg, M., Ek, A.C. & Bogren, L. ( 2005) Quality of life and burden in parents of outpatients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology , 40(2), 133-138.
8.
Goldberg, D., Kay, C. & Thompson, L. ( 1976) Psychiatric morbidity in general practice and the community . Psychological Medicine, 6(4), 565-569.
9.
Goldberg, D.P. & Williams, P. ( 1998) A User’s Guide to the General Health Questionnaire. WinsorNFER-Nelson.
10.
Gopinath, P.S. & Chaturvedi, S.K. ( 1992) Distressing behaviour of schizophrenics at home. Acta Psychiatrica Scandinavica, 86(3), 185-188.
11.
Guarnaccia, P.J. & Parra, P. ( 1996) Ethnicity, social status and families’ experiences of caring for a mentally ill family member. Community Mental Health Journal, 32(3), 243-260.
12.
Horwitz, A.V. & Reinhard, S.C. ( 1995) Ethnic differences in caregiving duties and burdens among parents and siblings of persons with severe mental illnesses. Journal of Health Social Behaviour, 36(2), 138-150.
13.
Howell, D.C. ( 2007) Fundamental Statistics for Behavioural Sciences. Belmont: Wadsworth.
14.
Jacob, K.S., Bhugra, D. & Mann, A.H. ( 1997) The validation of the 12-item General Health Questionnaire among ethnic Indian women living in the United Kingdom. Psychological Medicine, 27(5), 1215-1217.
15.
Jenkins, J.H. & Schumacher, J.G. ( 1999) Family burden of schizophrenia and depressive illness. Specifying the effects of ethnicity, gender and social ecology. British Journal of Psychiatry, 174, 31-38.
16.
Kay, S.R., Fiszbein, A. & Opler, L.A. ( 1987) The Positive and Negative Syndrome Scale (PANSS) for schizophrenia . Schizophrenia Bulletin, 13(2), 261-276.
17.
Lauber, C., Eichenberger, A., Luginbühl, P., Keller, C. & Rossler, W. ( 1993) Determinants of psychological distress in relatives of people with chronic schizophrenia. Schizophrenia Bulletin , 19(3), 619-625.
18.
Lester, H. & Wilson, S. ( 1999) Practical problems in recruiting patients with schizophrenia into randomized controlled trials. British Medical Journal , 318(7190), 1075.
19.
Levene, J.E., Lancee, W.J. & Seeman, M.V. ( 1996) The perceived family burden scale: Measurement and validation . Schizophrenia Research, 22(2), 151-157.
20.
Lloyd, H.M., Singh, P., Merritt, R., Shetty, A., Singh, S. & Burns, T. (in prep) An exploration of the determinants of parental burden in Indian and white parents.
21.
Lowyck, B., De Hert, M., Peeters, E., Wampers, M., Gilis, P. & Peuskens, J. ( 2004) A study of the family burden of 150 family members of schizophrenic patients. European Psychiatry, 19(7), 395-401.
22.
Madianos, M., Economou, M., Dafni, O., Koukia, E., Palli, A. & Rogakou, E. ( 2004) Family disruption, economic hardship and psychological distress in schizophrenia: Can they be measured? European Psychiatry, 19(7), 408-414.
23.
Magliano, L., Fadden, G., Fiorillo, A., Malangone, C., Sorrentino, D., Robinson, A. & Maj, M. ( 1999) Family burden and coping strategies in schizophrenia: Are key relatives really different to other relatives? Acta Psychiatrica Scandinavica, 99(1), 10-15.
24.
Moller-Leimkuhler, A.M. ( 2005) Burden of relatives and predictors of burden. Baseline results from the Munich five-year follow-up study on relatives of first-hospitalized patients with schizophrenia or depression. European Archives of Psychiatry and Clinical Neuroscience, 255, 223-231.
25.
Office of National Statistics (2002) Labour Force Survey. London: Office of National Statistics.
26.
Office of National Statistics (2005) 2001 Census. London: Office of National Statistics.
27.
Pai, S. & Kapur, R.L. ( 1981) The burden on the family of a psychiatric patient: Development of an interview schedule. British Journal of Psychiatry, 138, 332-335.
28.
Pai, S. & Kapur, R.L. ( 1982) Impact of treatment intervention on the relationship between dimensions of clinical psychopathology, social dysfunction and burden on the family of psychiatric patients. Psychological Medicine, 12(3), 651-658.
29.
Provencher, H.L. & Mueser, K.T. ( 1997) Positive and negative symptom behaviours and caregiver burden in the relatives of persons with schizophrenia. Schizophrenia Research, 26(1), 71-80.
30.
Provencher, H.L., Perreault, M., St-Onge, M. & Rousseau, M. ( 2003) Predictors of psychological distress in family caregivers of persons with psychiatric disabilities. Journal of Psychiatric and Mental Health Nursing, 10(5), 592-607.
31.
Smith, A. ( 2000) The new ethnicity classification in the labour force survey . London: Labour Market Division, Office of National Statistics.
32.
Szmukler, G.I., Wykes, T. & Parkman, S. ( 1998) Caregiving and the impact on carers of a community mental health service. PRiSM Psychosis Study. 6. British Journal of Psychiatry, 173, 399-403.
33.
Thornicroft, G., Tansella, M., Becker, T., Knapp, M., Leese, M., Schene, A. & Vazquez-Barquero, J.L. ( 2004) The personal impact of schizophrenia in Europe. Schizophrenia Research, 69(2-3), 125-132.
34.
Wig, N.N., Menon, D.K., Bedi, H., Leff, J., Kuipers, L., Ghosh, A., Day, R., Korten, A., Ernberg, G. & Sartorius, N. ( 1987) Expressed emotion and schizophrenia in North India. II. Distribution of expressed emotion components among relatives of schizophrenic patients in Aarhus and Chandigarh. British Journal of Psychiatry , 151, 160-165.
35.
Winefield, H.R. & Harvey, E.J. ( 1993) Determinants of psychological distress in relatives of people with chronic schizophrenia. Schizophrenia Bulletin , 19, 619-625.
36.
World Health Organization (1992) The ICD-10 Classification of Mental and Behavioural Disorders. Geneva: World Health Organization.
