Abstract
Schizophrenia is a disabling, chronic psychiatric disorder that poses numerous challenges in its management and consequences. It extols a significant cost to the patient in terms of personal suffering, on the caregiver as a result of the shift of burden of care from hospital to families, and on society at large in terms of significant direct and indirect costs that include frequent hospitalizations and the need for long-term psychosocial and economic support, as well as life-time lost productivity.
‘Burden of care’ is a complex construct that challenges simple definition, and is frequently criticized for being broad and generally negative. Frequently, burden of care is more defined by its impacts and consequences on caregivers. In addition to the emotional, psychological, physical and economic impact, the concept of ‘burden of care’ involves subtle but distressing notions such as shame, embarrassment, feelings of guilt and self-blame.
The early conceptualization of ‘burden of care’ into two distinct components (objective and subjective) has guided research efforts until the present time. Objective burden of care is meant to indicate its effects on the household such as taking care of daily tasks, whereas subjective burden indicates the extent to which the caregivers perceive the burden of care. Research contributions in later years (1980s to the present) have added more depth to understanding of the construct of burden of care by exploring important determinants and factors that likely contribute or mediate the caregiver’s perception of burden of care. Several studies examined the role of gender, and reported that relatives of male patients with schizophrenia frequently experience more social dysfunction and disabilities than those of female patients. Similarly, a number of other studies documented the contribution of ethnicity and cultural issues to subjective burden of care. Although there is no complete agreement on whether a specific cluster of psychotic symptoms has the most impact on a caregiver’s burden of care, there is agreement that the severity of symptoms increases it.
An extensive literature concerning family interventions in schizophrenia has demonstrated the positive impact of various family interventions in improving family environment, reducing relapse and easing the burden of care. Although the evidence of such positive impact of family interventions in schizophrenia is well documented, such interventions are neither widely used nor appropriately integrated in care plans, and are frequently underfunded.
Although the cost of caregiving is considered to be significant, there are no reliable estimates of the costs associated with such care. The majority of available literature categorized the cost of burden of care among the indirect costs of schizophrenia in general. In recent years, attempts to compare the costs of caregiving in several countries have been reported in the evolving literature on this topic. ‘Burden of care’ as a complex construct certainly requires the development of appropriate methodology for its costing.
In achieving a balance between the patients’ and caregivers’ perspectives, caregivers have to be included in the care plan and adequate information and support extended to the family and caregivers. Access to better treatment for patients, including medications, psychosocial interventions and rehabilitation services, are important basic elements in easing the burden on caregivers. Other measures such as availability of crisis management, provision of legally mandated community treatment to avert hospitalization, and well informed and balanced advocacy are also important.
Although research efforts have been expanded in the last 3 decades, an urgent need exists for enhancing such efforts, particularly in the development and evaluation of effective family interventions strategies. There is also a need for continued improvement in the delivery of psychiatric services to the severely psychiatrically ill and their families. As there is a lack of reliable cost information about the family burden of care specific to schizophrenia, there is an urgent need to develop reliable approaches that can generate data that can inform in policy making and organization of services.
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References
Davis LM, Drummond MF. The economic burden of schizophrenia. Psychiatr Bull 1940; 14: 522–525
Davis LM, Drummond MF. Economics and schizophrenia: the real cost. Br J Psychiatry 1994; 165 Suppl. 25: 18–21
Guest JF, Cookson RF. Cost of schizophrenia to U.K. society: an incidence-based cost-of-illness model for the first 5 years following diagnosis. Pharmacoeconomics 1999; 6: 597–610
Goldacre M, Shiwak R, Yates D. Estimating incidence and prevalence of treated psychiatric disorders from routine statistics: the example of schizophrenia. J Epidemiol Common Health 1994; 48: 318–322
Wing JK. Mental illness. In: Steven A, Raftery J, editors. Epidemiology needs assessment. London: HMSO, 1994
Crow TJ. Schizophrenia: diagnostic boundaries, epidemiology and brain changes. Clinician 1993; 11: 2–17
Awad AG, Voruganti LNP, Heselgrave RJ. The aim of anti-psychotic medication: what are they and are they being achieved? CNS Drug 1995; 4: 8–16
Barnes T, Andrew D, Awad AG. Poor compliance with treatment in people with schizophrenia: causes and management. In: Buckley PF, Waddington JL, editors. Schizophrenia and mood disorder: the new drug therapies in clinical practice. Oxford: Butterworth and Heinemann, 2000: 317–325
Clausen JA, Yarrow MR. The impact of mental illness on the family. J See Issues 1955; 11: 3–64
Clausen JA, Yarrow MR, Deasy LC, et al. The impact of mental illness: research formulation. J See Issues 1955; 11: 6–11
Grad J, Sainsbury P. Mental illness and the family. Lancet 1963; I: 544–547
Hoenig J, Hamilton MW. The schizophrenia patient in the community and his effect on the household. Int J Soc Psychiatry 1966; 12: 165–176
Dillehay R, Sandys M. Caregivers for Alzheimer’s patients: what we are learning from research? Int J Aging Hum Dev 1990; 30: 263–285
Sullivan HS. The onset of schizophrenia. Am J Psychiatr 1927; 1: 105–134
Tietze T. A study of mothers of schizophrenic patients. Psychiatry 1949; 12: 55–65
Bateson G, Jackson DD, Haley J, et al. Towards a therapy of schizophrenia. Behav Sci 1956; 5: 251–264
Wynne LC, Ryckoff L, Day J, et al. Pseudo-mutuality in the family relations of schizophrenics. Psychiatry 1958; 21: 205–220
Brown GW, Mo nek EM, Carstairs GM, et al. Influence of family life on the course of schizophrenic illness. Br J Prev and Soc Med 1962; 16: 55–68
Bebbington P, Kuipers L. The predictive utility of expressed emotions in schizophrenia: an aggregate analysis. Psychol Med 1994; 24: 707–718
Honkonen T, Saarinen S, Salokangas RK. Deinstitutionalization and schizophrenia in Finland II: discharged patients and their psychosocial functioning. Schizophr Bull 1999; 25: 543–551
Rossler W, Salize HJ, Cucchiaro G, et al. Does the place of treatment influence the quality of life of schizophrenics? Acta Psychiatr Scand 1999; 100: 142–148
Glynn SM, Cohen AN, Dixon LB, et al. The potential impact of the recovery movement on family interventions: opportunities and obstacles. Schizophr Bull 2006; 32: 451–463
Warner R. Recovery from schizophrenia: psychiatry and political economy. 3rd ed. London: Brunner-Routledge, 2003
President’s New Freedom Commission on Mental Health. Achieving the promise: transforming mental health care in America. Executive summary. Rockville (MD): Department of Health and Human Resources, 2003
Bobak N, Blame D, Marmott M. Social determinants of health: their relevance in the European context [online]. Available from URL: http://www.who.dk/verona/pub.htm [Accessed 2000 Nov 7]
Magliano L, Marasco C, Fiorillo A, et al. The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy. Working Group of the Italian National Study on Families of Persons with Schizophrenia. Acta Psychiatr Scand 2002; 106: 291–298
Lehman AF, Lieberman JA, Dixon LB, American Psychiatric Association, et al. Pratice guideline for the treatment of patients with schizophrenia, second edition. Am J Psychiatry 2004; 161 (2): 1–56
Comprehensive accreditation manual for hospitals and the comprehensive manual for behavioural care. Chicago (IL): Joint Commission on Accreditation of Health Care Organizations, 1997
Lehman AF, Kreyenbuhl J, Buchanam RW. The schizophrenic Patient Outcomes Research Team (PORT): updated treatment recommendations. Schizophr Bull 2004; 30: 193–217
Mandelbrote BM, Folkard S. Some problems and needs of schizophrenics in relation to a developing psychiatric community service. Compr Psychiatry 1961; 2: 317–328
Yarrow M, Clausen J, Robbins P. The social meaning of mental illness. J Soc Issues 1955; 11: 33–48
Yarrow M, Schwartz CG, Murphy HS, et al. The psychological meaning of mental illness in the family. J Soc Issues 1955; 11: 12–24
Waters MA, Northover J. Rehabilitated long-stay schizophrenics in the community. Br J Psychiatry 1965; 111: 258–267
Mills E. Living with mental illness: a study in East London. London: Routledge and Paul, 1962
Kreitman N. The patient’s spouse. Br J Psychiatry 1964; 110: 159–173
Kreisman DE, Joy VD. Family response to the mental illness of a relative: a review of literature. Schizophr Bull 1974; 10: 34–57
Biegel D, Milligan S. The role of race in family caregiving with persons with mental illness: burden, support systems and the use of self help. Cleveland (OH): Mandel school of Applied Social Services, 1992
Mors O, Sorensen LV, Therkilden ML. Distress in the relatives of psychiatric patients admitted for the first time. Acta Psychiatr Scand 1992; 85: 507–511
Scazufca M, Kuipers E. Links between expressed emotion and burden of care in relatives of patients with schizophrenia. Br J Psychiatry 1996; 168: 580–587
Awad AG, Wallace M. Patient and carer perspectives in schizophrenia: a workshop. The First Worldwide Pfizer Neuros-cience Consultants Forum; 1999 Apr 14; Barcelona
Guarnaccia P, Parra P. Ethnicity, social status and families’ experiences of caring for a mentally ill family member. Community Ment Health J 1996; 32: 243–260
Rosenfarb IS, Bellack AS, Aziz N. A socio-cultural stress, appraisal and coping model of schizophrenia burden and family attitudes towards patients with schizophrenia. J Abn Psychol 2006; 115: 157–165
Jenkins J. Ethnopsychiatric conceptions of schizophrenia illness: the problem with nervios within Mexican American families. Cult Med Psychiatry 1988; 12: 301–329
Jenkins J. Subjective experiences of persistent schizophrenia and depression among U.S. Latinos and Euro-Americans. Br J Psychiatry 1997; 171: 20–25
Tessler RC, Fisher GA, Gamache GM. Dilemmas of kinship: mental illness and the modern American family. Amherst (MA): Amherst Social and Demographic Research Institute, University of Massachusetts, 1990
Karno M, Jenkins JH, de la Selva A, et al. Expressed emotion and schizophrenic outcome among Mexican Americans. J Nerv Ment Dis 1987; 175: 143–151
Jenkins JH, Karno M, de la Silva A, et al. Expressed emotion in cross-cultural context: familial responses to schizophrenic illness among Mexican Americans. In: Goldstein MJ, Hahlweg K, editors. Treatment of schizophrenia: family assessment and intervention. New York: Springer-Verlag, 1986
Jenkins JH, Karno M. The meaning of expressed emotion: theoretical issues raised by cross-cultural research. Am J Psychiatry 1992; 149: 9–21
Kopelowicz A, Lopez S, Zarate R, et al. Expressed emotions and family interactions in Mexican Americans with schizophrenia. J Nerv Ment Dis 2006; 194: 330–334
Guttierez-Maldonado J, Caqueo-Urizar A, Kavanagh DJ. Burden of car and general health in families of patients with schizophrenia. Soc Psychiatr Epidemiol 2005; 40: 899–904
Woltraus JED, Dingemans PMAJ, Scheme AH. Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis 2002; 190: 241–247
Magliano L, Fiorillo A, Malangona C. Family burden in schizophrenia: effects of socio-environmental and clinical variables and family interventions. Epidemiol Psichiatr Soc 1998; 7: 178–187
Dyck DG, Short R, Vitaliano PP. Predictors of burden and infection illness in schizophrenia caregivers. Psychosomatic Med 1999; 61: 411–419
Vaughn CE. Pattern of interactions in families of schizophrenic. In: Katschnig H, editor. Schizophrenia: the other side. Vienna: Urban and Schwarzenberg, 1977
Provencher HL, Mueser KT. Positive and negative symptoms behaviours and caregivers burden in the relatives of persons with schizophrenia. Schizophr Res 1997; 26: 71–80
Webb C, Pfieffer M, Mueser KT. Burden and wellbeing of caregivers for the severely mentally ill: the role of coping style and social support. Schizophr Res 1998; 34: 169–180
Schene AH, Wijnagaarden B, Koeter MWJ. Family caregiving in schizophrenia: domains and distress. Schizophr Bull 1998; 4: 609–618
Magliano L, Marasco C, Fiorillo A. The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy. Acta Psychiatr Scan 2002; 106: 291–298
Samele C, Manning N. Level of caregiver burden among relatives of the mentally ill in South Verona. Eur Psychiatry 2000; 15: 196–204
Foldemo A, Gullberg M, Ek AC, et al. Quality of life and burden in parents of outpatients with schizophrenia. Soc psychiatr Epidemiol 2005; 40: 133–138
Gallagher SK, Mechanic D. Living with the mentally ill: effects on the health and functioning of other household members. Soc Sci Med 1996; 42: 1691–1701
Noh S, Turner R. Living with psychiatric patients: implication for the mental health of the family members. Soc Sci Med 1987; 25: 263–271
Gopinath PS, Chaturvedi SK. Distressing behaviour of schizophrenia at home. Acta Psychiatr Scand 1992; 86: 185–188
Maurin JT, Barmann CB. Burden of mental illness on the family: a critical review. Arch Psychiatr Nurs 1990; 2: 99–107
Marten L, Addington J. The psychological well-being of family members of individuals with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 2001; 36: 128–133
Parker BA. Living with mental illness: the family as caregiver. J Psychosoc Nurs Ment Health Serv 1993; 31: 19–21
Caqueo-Urizar A, Guttierrez-Maldonado J. Burden of care in families of patients with schizophrenia. Qual Life Res 2006; 15: 719–724
Franks D. Economic contributions of families caring for a person with severe and persistent mental disorder. Adm Policy Ment Health 1990; 18: 9–18
Wu E, Birnbaum H, Shi L, et al. The economic burden of care. J Clin Psychiatry 2005; 66: 1122–1129
Knapp M, Mangalore R, Simon J. The global costs of schizophrenia. Schizophr Bull 2004; 30: 279–293
Madianos M, Economou M, Dafni O, et al. Family disruption, economic hardship and psychological distress in schizophrenia: can they be measured? Eur Psychiatry 2004; 19: 408–414
Magna S, Ramirez Garcia J, Hernandez M, et al. Psychological distress among Latino family caregivers of adults with schizophrenia: the roles of burden and stigma. Psychiatr Serv 2007; 58: 378–384
Jungbaur J, Wittmund B, Dietrich S, et al. Subjective burden over 12 months in parents of patients with schizophrenia. Arch Psychiatr Nurs 2003; 17: 126–134
Hahlweg K, Wiedmann G. Principles and results of family therapy in schizophrenia. Eur Arch Psychiatry Clin Neurosci 1999; 249 Suppl. 4: IV/108–IV/115
Berglund N, Vahlne JO, Edman A. Family intervention in schizophrenia: impact on family burden and attitudes. Soc Psychiatr Epidemiol 2003; 38: 116–121
Solomon P. Interventions for families of individuals with schizophrenia: maximizing benefits for the relatives. Dis Manag Health Outcome 2000; 8: 211–221
Dixon L, Lehman A. Family interventions for schizophrenia. Schizophr Bull 1995; 21: 631–643
Schooler N, Keith SJ, Severe J, et al. Relapse and re-hospitalization during maintenance treatment of schizophrenia: the effects of dose reduction and family treatment. Arch Gen Psychiatry 1997; 54: 453–463
Hogarty GE, Anderson CM, Reiss DJ, et al. Family psychoeducation, social skills training and maintenance chemotherapy in the aftercare treatment of schizophrenia. Arch Gen Psychiatry 1986; 43: 633–642
Montero I, Asendo A, Hernandaz I, et al. Two strategies for family intervention in schizophrenia: a randomized trail in a Mediterranean environment. Schizophr Bull 2000; 27: 661–670
Randolph E, Eth S, Glynn SM, et al. Behavioural family management in schizophrenia: outcome of clinic based intervention. Br J Psychiatry 1994; 164: 501–506
Falloon IRH, Liberman RP, Lillie FJ, et al. Family therapy of schizophrenia with high risk of relapse. Family Proc 1981; 20: 211–221
Guttierrez-Maldonado J, Caqueo-Urizar A. Effectiveness of a psycho-educational intervention for reducing burden in Latin American families of patients with schizophrenia. Qual Life Res 2007; 16: 739–747
Mueser KT, Sengupta A, Schooler NR, et al. Family treatment and medication dosage reduction in schizophrenia: effects on patient social functioning, family attitudes and burden. J Consul Clin Psychol 2001; 69: 3–12
McFarlane WR, Dushay RA, Stasthy P, et al. A comparison of two levels of family-aided assertive community treatment. Psychiat Serv 1996; 47: 744–750
Pilling S, Bebington P, Kuipers E, et al. Psychological treatments in schizophrenia: I. Meta-analysis of family intervention and cognitive behaviour therapy. Psychol Med 2002; 32: 763–782
Pitschel-Walz G, Leucht S, Bauml J, et al. The effect of family interventions on relapse and rehospitalization in schizophrenia: a meta-analysis. Schizophr Bull 2001; 27: 73–92
Barrowclough C, Tarrier N. Social functioning in schizophrenic patients: I. The effects of expressed emotion and family intervention. Soc Psychiatry Psychiatr Epidemiol 1990; 25 (3): 125–129
Fallon IR, McGill CW, Boyd JL, et al. Family management in the prevention of morbidity of schizophrenia: social outcome of two year longitudinal study. Psychol Med 1987; 17: 59–66
Hogarty GE, Anderson C, Reiss D, et al. Family psychoeducation, social skills training and maintenance chemotherapy in the aftercare treatment of schizophrenia: II. Two year effects of a controlled study on relapse and adjustment. Arch Gen Psychiatry 1991; 48: 340–347
Yamaguchi H, Takahashi A, Takano A, et al. Direct effects of short term psychoeducation intervention for relatives of patients with schizophrenia in Japan. Psychiatry Clin Neurosci 2006; 60: 590–597
Xiong W, Phillips MR, Hu X, et al. Family based intervention for schizophrenic patients in China: a randomized controlled trial. Br J Psychiatry 1994; 165: 239–247
Kottgen C, Sonnichsen I, Mollenhauser K, et al. Group therapy with the families of schizophrenic patients: results of the Hamburg Camberwell Family Interview Study III. Int J Fam Psychiatry 1984; 5: 84–94
Schene AH, Tessler RC, Gamache GM. Instruments measuring family or caregiver burden in severe mental illness. Soc Psychiatry Psychiatr Epidemiol 1994; 29: 228–240
Piatt S. Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med 1985; 15: 383–394
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980; 20 (6): 649–655
Tessler R, Gamache G. The Family Burden Interview Schedule — Short Form (EBIS/SF). Tool kit for evaluating family experiences with severe mental illness. Amherst (MA): Social and Demographic Research Institute, University of Massachusetts, 1994
Skinner HA, Steinhauer PD, Santa-Barbara J. Family assessment measure III. North Tonawanda (NY): Multi-Health Systems, 1995
Schooler NR, Hogarty GE, Weissman M. Social Adjustment Scale II (SAS-II). In: Hargraves WA, Atkinson CC, Sorenson JE, editors. Resource materials for community mental health program evaluations. Rockville (MD): National Institute of Mental Health, 1979: 290–3003
Weisbord BA. A guide to benefit-cost analysis as seen through a controlled experiment in treating the mentally ill. J Health Polit Policy Law 1983 Winter; 7: 808–845
Cannon N. A cost effectiveness analysis of a controlled experiment comparing treatment alternatives for chronically mentally ill patients [doctoral dissertation]. Waltham (MA): Brandeis University, 1985
Dickey B, Bunner PR, Leff S, et al. Containing mental health treatment costs through program design: a Massachusetts study. Am J Pub Health 1989; 79: 863–867
Mangalore R, Knapp M. Cost of schizophrenia in England. J Ment Health Policy Econ 2007; 10: 23–41
Magliano L, Fadden G, Madianos M, et al. Burden on the families of patients with schizophrenia: results of the BI-OMEDI study. Soc Psychiatry Psychiatr Epidemiol 1998; 33: 405–412
Tarricone R, Gerzeli S, Montanelli R, et al. Direct and indirect costs of schizophrenia in community psychiatric services in Italy: the GISIES study. Interdisciplinary study Group on the economic impact of schizophrenia. Health Policy 2000; 51: 1–18
Rupp A, Harangozo J, Bognar G, et al. A Szkizofrenia Gazdasogi Koltsegei Magyarorszagon. Az 1990 es evekben. Psychiatr Hung 1999; 14 (2): 131–142
Rice DP, Miller LS. The economic burden of schizophrenia: conceptual and methodological issue and cost estimate. In: Moscarelli M, Rupp A, Sartorius N, editors. Handbook of mental health economics and health policy. Vol. I. Chichester: John Wiley and Sons, 1996
Suleiman TG, Ohaeri JU, Lawal RA, et al. Financial cost of treating outpatients with schizophrenia in Nigeria. Br J Psychiatry 1997; 171: 364–368
Van Wijngaarden B, Schene A, Koeler M. People with schizophrenia in five countries: conceptual similarities and intercul-tural differences in family caregiving. Schizophr Bull 2003; 29: 573–586
Awad AG, Voruganti LNP. Cost-utility analysis in schizophrenia. J Clin Psychiatry 1999; 60 Suppl. 3: 22–26
Beard J, Gillespie PN. Nothing to hide: mental illness in the family. New York: New Press First Person Accounts, 2002
Kawanishi Y Families coping with mental illness: stories in the U.S. and Japan. New York: Routledge, 2005
Marsh DT, Dickens R. How to cope with mental illness in your family: a self-care guide for siblings, off springs and parents. New York: Jeremy P. Tarcher/Putnam, 1998
Torrey EF. Surviving schizophrenia: a manual for families, consumer and providers. 4th ed. New York: Harper, 2001
Mueser KT, Gingerich S. The complete family guide to schizophrenia. New York: The Guilford Press, 2006
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No sources of funding were used to assist in the preparation of this review. The authors have no conflicts of interest that are directly relevant to the content of this review.
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Awad, A.G., Voruganti, L.N.P. The Burden of Schizophrenia on Caregivers. Pharmacoeconomics 26, 149–162 (2008). https://doi.org/10.2165/00019053-200826020-00005
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DOI: https://doi.org/10.2165/00019053-200826020-00005