Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia

Affiliations

10 September 2010

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doi: 10.1186/1471-244X-10-71


Abstract

Background: Although the burden experienced by families of people with schizophrenia has long been recognized as one of the most important consequences of the disorder, there are no reports from the Arab world. Following the example of the five-nation European (EPSILON) study, we explored the following research question: How does the relationship between domains of caregiving (as in the Involvement Evaluation Questionnaire--IEQ-EU) and caregiver psychic distress on the one hand, and caregiver's/patient's socio-demographics, clinical features and indices of quality of care, on the other hand, compare with the pattern in the literature?

Method: Consecutive family caregivers of outpatients with schizophrenia were interviewed with the IEQ-EU. Patients were interviewed with measures of needs for care, service satisfaction, quality of life (QOL) and psychopathology.

Results: There were 121 caregivers (66.1% men, aged 39.8). The IEQ domain scores (total: 46.9; tension: 13.4; supervision: 7.9; worrying: 12.9; and urging: 16.4) were in the middle of the range for the EU data. In regression analyses, higher burden subscale scores were variously associated with caregiver lower level of education, patient's female gender and younger age, as well as patient's lower subjective QOL and needs for hospital care, and not involving the patient in outdoor activities. Disruptive behavior was the greatest determinant of global rating of burden.

Conclusion: Our results indicate that, despite differences in service set-up and culture, the IEQ-EU can be used in Kuwait as it has been used in the western world, to describe the pattern of scores on the dimensions of caregiving. Differences with the international data reflect peculiarities of culture and type of service. Despite generous national social welfare provisions, experience of burden was the norm and was significantly associated with patient's disruptive behavior. The results underscore the need for provision of community-based programs and continued intervention with the families in order to improve the quality of care.


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KMEL References


References

  1.  
    1. Awad AG, Voruganti LN. The burden of schizophrenia on caregivers: a review. Pharmacoeconomics. 2008;26:149–162. doi: 10.2165/00019053-200826020-00005. - DOI - PubMed
  2.  
    1. Ohaeri JU. The burden of caregiving in families with a mental illness: a review of 2002. Curr Opinion Psychiatry. 2003;16:457–465. doi: 10.1097/00001504-200307000-00013. - DOI
  3.  
    1. Jungbauer J, Wittmund B, Dietrich S, Angermeyer MC. The disregarded caregivers: subjective burden in spouses of schizophrenia patients. Schizophr Bull. 2004;30:665–675. - PubMed
  4.  
    1. Vilaplana M, Ochoa S, Martinez A, Villalta V, Martinez-Leal R, Puigdollers E, Salvador L, Martorell A, Muñoz PE, Haro JM. PSICOST-RED RIRAG group. Validation in Spanish population of the family objective and subjective burden interview (ECFOS-II) for relatives of patients with schizophrenia. Actas Esp Psiquiatr. 2007;35:372–381. - PubMed
  5.  
    1. Chien WT, Norman I. The effectiveness and active ingredients of mutual support groups for family caregivers of people with psychotic disorders: a literature review. Int J Nurs Stud. 2009;46:1604–1623. doi: 10.1016/j.ijnurstu.2009.04.003. - DOI - PubMed
  6.  
    1. Sauders JC. Families living with severe mental illness: a literature review. Issues Mental Hlth Nurs. 2003;24:175–198. doi: 10.1080/01612840305301. - DOI - PubMed
  7.  
    1. Malakouti SK, Nojomi M, Panaghi L, Chimeh N, Mottaghipour Y, Joghatai MT, Noorbala AA, Bolhari J. Case-management for Patients with Schizophrenia in Iran: A Comparative Study of the Clinical Outcomes of Mental Health Workers and Consumers' Family Members as Case Managers. Community Mental Hlth J. 2009. E pub May 5. - PubMed
  8.  
    1. Mottaghipour Y, Pourmand D, Maleki H, Davidian L. Expressed emotion and the course of schizophrenia in Iran. Soc Psychiatry Psychiatr Epidemiol. 2001;36:195–199. doi: 10.1007/s001270170063. - DOI - PubMed
  9.  
    1. Magliano L, Fadden G, Madianos M, de Almeida JM, Held T, Guarneri M, Marasco C, Tosini P, Maj M. Burden on the families of patients with schizophrenia: results of the BIOMED I study. Soc Psychiatry Psychiatr Epidemiol. 1998;33:405–412. doi: 10.1007/s001270050073. - DOI - PubMed
  10.  
    1. 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;73:302–309. doi: 10.1037/0002-9432.73.3.302. - DOI - PubMed
  11.  
    1. Roick C, Heider D, Bebbington PE, Angermeyer MC, Azorin JM, Brugha TS, Kilian R, Johnson S, Toumi M, Kornfeld A. EuroSC Research Group. EuroSC Research Group. Burden on caregivers of people with schizophrenia: comparison between Germany and Britain. Br J Psychiatry. 2007;190:333–338. doi: 10.1192/bjp.bp.106.025353. - DOI - PubMed
  12.  
    1. van Wijngaarden B, Schene A, Koeter M, Becker T, Knapp M, Knudsen HC, Tansella M, Thornicroft G, Vázquez-Barquero JL, Lasalvia A, Leese M. EPSILON Study Group. People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving. Schizophr Bull. 2003;29:573–86. - PubMed
  13.  
    1. Gutiérrez-Maldonado J, Caqueo-Urízar A, Kavanagh DJ. Burden of care and general health in families of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol. 2005;40:899–904. doi: 10.1007/s00127-005-0963-5. - DOI - PubMed
  14.  
    1. Zahid MA, Ohaeri JU, Elshazli AS, Basiouny MA, Hamoda MA, Varghese R. Correlates of quality of life in an Arab schizophrenia sample. Soc Psychiatry Psychiatr Epidemiol. 2010;45:875–87. doi: 10.1007/s00127-009-0131-4. - DOI - PubMed
  15.  
    1. Hou SY, Ke CL, Su YC, Lung FW, Huang CJ. Exploring the burden of the primary family caregivers of schizophrenia patients in Taiwan. Psychiatr Clin Neurosci. 2008;62:508–512. doi: 10.1111/j.1440-1819.2008.01843.x. - DOI - PubMed
  16.  
    1. Parabiaghi A, Lasalvia A, Bonetto C, Cristofalo D, Marrella G, Tansella M, Ruggeri M. 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. 2007. pp. 66–76. - DOI - PubMed
  17.  
    1. Ochoa S, Vilaplana M, Haro JM, Villalta-Gil V, Martínez F, Negredo MC, Casacuberta P, Paniego E, Usall J, Dolz M, Autonell J. NEDES Group. Do needs, symptoms or disability of outpatients with schizophrenia influence family burden? Soc Psychiatry Psychiatr Epidemiol. 2008;43:612–618. doi: 10.1007/s00127-008-0337-x. - DOI - PubMed
  18.  
    1. Caqueo-Urízar A, Gutiérrez-Maldonado J, Miranda-Castillo C. Quality of life in caregivers of patients with schizophrenia: a literature review. Health Qual Life Outcomes. 2009;7:84. doi: 10.1186/1477-7525-7-84. - DOI - PMC - PubMed
  19.  
    1. Li J, Lambert CE, Lambert VA. Predictors of family caregivers' burden and quality of life when providing care for a family member with schizophrenia in the People's Republic of China. Nurs Health Sci. 2007;9:192–198. doi: 10.1111/j.1442-2018.2007.00327.x. - DOI - PubMed
  20.  
    1. Magaña SM, Ramírez García JI, Hernández MG, Cortez R. Psychological distress among latino family caregivers of adults with schizophrenia: the roles of burden and stigma. Psychiatr Serv. 2007;58:378–384. doi: 10.1176/appi.ps.58.3.378. - DOI - PMC - PubMed
  21.  
    1. Caqueo-Urízar A, Gutiérrez-Maldonado J. Burden of care in families of patients with schizophrenia. Qual Life Res. 2009;15:719–724. doi: 10.1007/s11136-005-4629-2. - DOI - PubMed
  22.  
    1. Ohaeri JU. Caregiver burden and psychotic patients' perception of social support in a Nigerian setting. Soc Psychiatry Psychiatr Epidemiol. 2001;36:86–89. doi: 10.1007/s001270050294. - DOI - PubMed
  23.  
    1. Winefield HR, Harvey EJ. Determinants of psychological distress in relatives of people with chronic schizophrenia. Schizophr Bull. 1993;19:619–625. - PubMed
  24.  
    1. Graap H, Bleich S, Herbst F, Scherzinger C, Trostmann Y, Wancata J, de Zwaan M. The needs of carers: a comparison between eating disorders and schizophrenia. Soc Psychiatry Psychiatr Epidemiol. 2008;43:800–807. doi: 10.1007/s00127-008-0364-7. - DOI - PubMed
  25.  
    1. Sibitz I, Amering M, Kramer B, Griengl H, Katschnig H. The course of illness and problems of schizophrenic women and men from the relatives' perspective. Psychiatr Prax. 2002;29:148–153. doi: 10.1055/s-2002-25098. - DOI - PubMed
  26.  
    1. Roick C, Heider D, Toumi M, Angermeyer MC. The impact of caregivers' characteristics, patients' conditions and regional differences on family burden in schizophrenia: a longitudinal analysis. Acta Psychiatr Scand. 2006;114:363–374. doi: 10.1111/j.1600-0447.2006.00797.x. - DOI - PubMed
  27.  
    1. Kalra H, Nischal A, Trivedi JK, Dalal PK, Sinha PK. Extent and determinants of burden of care in Indian families: a comparison between obsessive-compulsive disorder and schizophrenia. Int J Soc Psychiatry. 2009;55:28–38. doi: 10.1177/0020764008091438. - DOI - PubMed
  28.  
    1. Tang VWK, Leung SK, Lam LC-W. Clinical correlates of the caregiving experience for Chinese caregivers of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol. 2008;43:720–726. doi: 10.1007/s00127-008-0357-6. - DOI - PubMed
  29.  
    1. van Wijngaarden B, Schene A, Koeter M, Vazquez-Barquero JL, Kundsen HC, Lassalvia A, McCrone P. and the EPSILON Study Group. Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire - European Version. Br J Psychiatry. 2000;177(suppl 39):s21–s27. doi: 10.1192/bjp.177.39.s21. - DOI - PubMed
  30.  
    1. Schene AH, van Wijngaarden B, Koeter MWJ. Family caregiving in schizophrenia: domains and distress. Schizophr Bull. 1998;24:609–618. - PubMed
  31.  
    1. Tang VWK, Leung SK, Lam LCM. Validation of the Chinese version of the involvement evaluation questionnaire. Hong Kong J Psychiatry. 2008;18:6–14.
  32.  
    1. Schene AH. Objective and subjective dimensions of family burden. Towards an integrative framework for research. Soc Psychiatry Psychiatr Epidemiol. 1990;25:289–297. doi: 10.1007/BF00782883. - DOI - PubMed
  33.  
    1. Junca A, Ustun TB, Early TS, Sartorious N. The ICD-10 Symptom Checklist: a comparison to the ICD-10 Classification of Mental and Behavioural Disorders. Soc Psychiatry Psychiatr Epidemiol. 1993;28:239–242. - PubMed
  34.  
    1. Leucht S, Kane JM, Kissling W, Hamann J, Etschel E, Engel R. Clinical implications of Brief Psychiatric Rating Scale scores. Br J Psychiatry. 2005;187:366–371. doi: 10.1192/bjp.187.4.366. - DOI - PubMed
  35.  
    1. Alshubaili AF, Ohaeri JU, Awadalla AW, Mabrouk AA. Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study. BMC Health Services Research. 2008;8:206. doi: 10.1186/1472-6963-8-206. - DOI - PMC - PubMed
  36.  
    1. Ruggeri M, Lasalvia A, Dall'agnola R, van Wijngaarden B, Knudsen HC, Leese M, Gaite L, Tansella M. and the EPSILON study group. Development, internal consistency and reliability of the Verona Satisfaction Scale - European version. Br J Psychiatry. 2000;177(suppl 39):s41–s48. doi: 10.1192/bjp.177.39.s41. - DOI - PubMed
  37.  
    1. McCrone P, Lesse M, Thornicroft G. et al.Reliability of the Camberwell Assessment of Need - European Version. Br J Psychiatry. 2000;177(Suppl 39):s34–s40. doi: 10.1192/bjp.177.39.s34. - DOI - PubMed
  38.  
    1. Gaite L, Vazquez-Barquero JL, Arrizabalaga AA, Schene A, Welcher B, Thornicroft G, Ruggeri M, Vazquez-Bourgon E, Retuerto MP, Leese M. and the EPSILON study group. Quality of life in schizophrenia: development, reliability and internal consistency of the Lancashire Quality of Life Profile - European version. Br J Psychiatry. 2000;177(Suppl 39):s49–s54. doi: 10.1192/bjp.177.39.s49. - DOI - PubMed
  39.  
    1. Ventura J, Nuechterlein KH, Subotnik KL, Gutkind D, Gilbert EA. Symptom dimensions in recent-onset schizophrenia and mania: a principal components analysis of the 24-item Brief Psychiatric Rating Scale. Psychiatry Res. 2000;97:129–135. doi: 10.1016/S0165-1781(00)00228-6. - DOI - PubMed
  40.  
    1. American Psychiatry Association. Diagnostic and Statistical Manual of Mental Disorders IV. 1994.
  41.  
    1. Becker T, Knapp M, Knudsen HC, Schene AH, Tansella M, Thornicroft G, Vazquez-Barquero JL. the EPSILON study group. Aims, outcome measures, study sites and patient sample. Br J Psychiatry. 2000;177(suppl 39):s1–s7. doi: 10.1192/bjp.177.39.s1. - DOI - PubMed
  42.  
    1. Zahid MA, Ohaeri JU. Schizophrenia psychopathology in a Kuwaiti Arab sample . Psychopathol. 2010;43(6):345–56. doi: 10.1159/000320349. - DOI - PubMed
  43.  
    1. Goldberg D, Williams PA. User's Guide to the General Health Questionnaire. Windsor, UK: NFER-Nelson; 1998.
  44.  
    1. Sefasi A, Crumlish N, Samalani P, Kinsella A, O'Callaghan E, Chilale H. A little knowledge: caregiver burden in schizophrenia in Malawi. Soc Psychiatry Psychiatr Epidemiol. 2008;43:160–164. doi: 10.1007/s00127-007-0276-y. - DOI - PubMed
  45.  
    1. van Nieuwenhuizen Ch, Schene A, Koeter MW, Huxley PJ. The Lancashire Quality of Life Profile: modification and psychometric evaluation. Soc Psychiatry Psychitr Epidemiol. 2001;36:36–44. doi: 10.1007/s001270050288. - DOI - PubMed
  46.  
    1. Bradburn N. The structure of psychological well-being. Chicago, Aldine; 1969.
  47.  
    1. Rosenberg M, (ed) Society and the adolescent self - image. Princeton: Princeton University Press; 1965.
  48.  
    1. Van Steen K, Curran D, Kramer J, Molenberghs G, Van Vreckem A, Bottomley A, Sylvester R. Multicollinearity in prognostic factor analyses using the EORTC QLQ-C30: identification and impact on model selection. Statistics Med. 2002;21:3865–3884. doi: 10.1002/sim.1358. - DOI - PubMed
  49.  
    1. Winefield HR, Harvey EJ. Needs of family caregivers in chronic schizophrenia. Schizophr Bull. 1994;20:557–566. - PubMed
  50.  
    1. Veltman A, Cameron J, Stewart DE. The experience of providing care to relatives with chronic mental illness. J Nerv Ment Dis. 2002;190:108–114. doi: 10.1097/00005053-200202000-00008. - DOI - PubMed
  51.  
    1. Ohaeri JU, Fido AA. The opinion of caregivers on aspects of schizophrenia and major affective disorders in a Nigerian setting. Soc Psychiatry Psychiatr Epidemiol. 2001;36:493–499. doi: 10.1007/s001270170014. - DOI - PubMed
  52.  
    1. El-Islam MF. Arab Culture and Mental Health Care. Transcultural Psychiatry. 2008;45:671–682. doi: 10.1177/1363461508100788. - DOI - PubMed
  53.  
    1. Thornicroft G, Leese M, Tansella M, Howard L, Toulmin H, Herran A, Schene A. Gender differences in living with schizophrenia. A cross-sectional European multi-site study. Schizophr Res. 2002;57:191–200. doi: 10.1016/S0920-9964(01)00318-8. - DOI - PubMed
  54.  
    1. Perlick DA, Rosenheck RA, Kaczynski R, Swartz MS, Cañive JM, Lieberman JA. Components and correlates of family burden in schizophrenia. Psychiatr Serv. 2006;57:1117–1125. doi: 10.1176/appi.ps.57.8.1117. - DOI - PubMed
  55.  
    1. Wolthaus JE, Dingemans PM, Schene AH, Linszen DH, Wiersma D, Van Den Bosch RJ, Cahn W, Hijman R. Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis. 2002;190:241–247. doi: 10.1097/00005053-200204000-00005. - DOI - PubMed
  56.  
    1. Breithborde NJK, Lopez SR, Chang C, Kopelowicz A, Zarate R. Emotional over-involvement can be deleterious for caregiver's health. Soc Psychiatry Psychiatr Epidemiol. 2009;44:716–723. doi: 10.1007/s00127-008-0492-0. - DOI - PubMed