Burden of informal care giving to patients with psychoses: A descriptive and methodological study

International Journal of Social Psychiatry

Volumn 59, Issue 2, 2013, Pages 137-146

  Flyckt, Lena ^a   Löthman, Anna ^b   Jörgensen, Leif ^c   Rylander, Anders ^d   Koernig, Thomas ^c  

^a ST GÖRAN S HOSPITAL   (Sweden)

^b Section of Psychotic Disorders   (Sweden)

^c ASTRAZENECA R AND D   (Sweden)

^d AR Health Economic Consultancy ^*  (Sweden)

Author keywords

diary method; Informal care giving; objective burden; recall method; schizophrenia; subjective burden

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; AMBULATORY CARE; ARTICLE; CAREGIVER; COST OF ILLNESS; ECONOMICS; FEMALE; HEALTH CARE QUALITY; HUMAN; MALE; MEDICAL RECORD; MENTAL STRESS; METHODOLOGY; MIDDLE AGED; PATIENT CARE; PSYCHOLOGICAL ASPECT; PSYCHOSIS; QUESTIONNAIRE; STANDARD; STATISTICS; SWEDEN; TIME;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AMBULATORY CARE; CAREGIVERS; COST OF ILLNESS; FEMALE; HUMANS; MALE; MEDICAL RECORDS; MIDDLE AGED; PATIENT CARE; PROCESS ASSESSMENT (HEALTH CARE); PSYCHOTIC DISORDERS; QUESTIONNAIRES; STRESS, PSYCHOLOGICAL; SWEDEN; TIME FACTORS;

MLCS; MLOWN;

EID: 84874030524     PISSN: 00207640     EISSN: 17412854     Source Type: Journal    
DOI: 10.1177/0020764011427239     Document Type: Article

References (44)

1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders, IV edn. Washington, DC: American Psychiatric Press.
2. Andren S., Elmstahl S.. Family caregivers' subjective experiences of satisfaction in dementia care: Aspects of burden, subjective health and sense of coherence. Scandinavian Journal of Caring Sciences. 2005 ; 19: 157-168
3. Awad A. G., Voruganti L. N.. The burden of schizophrenia on caregivers: A review. Pharmacoeconomics. 2008 ; 26: 149-162
4. Balducci C., Mnich E., McKee K. J., Lamura G., Beckmann A., Krevers B., Oberg B.. Negative impact and positive value in caregiving: Validation of the COPE index in a six-country sample of carers. Gerontologist. 2008 ; 48: 276-286
5. Borg C., Hallberg I. R.. Life satisfaction among informal caregivers in comparison with non-caregivers. Scandinavian Journal of Caring Sciences. 2006 ; 20: 427-438
6. Brouwer W. B., van Exel N. J., van Gorp B., Redekop W. K.. The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research. 2006 ; 15: 1005-1021
7. Burstrom K., Johannesson M., Diderichsen F.. Swedish population health-related quality of life results using the EQ-5D. Quality of Life Research. 2001 ; 10: 621-635
8. Carton H., Loos R., Pacolet J., Versieck K., Vlietinck R.. A quantitative study of unpaid caregiving in multiple sclerosis. Multiple Sclerosis Journal. 2000 ; 6: 274-279
9. Dalman C., Wicks S. The utilization of psychiatric services among children and adults in Sweden. Stockholm: Department of Public Health Sciences, Stockholm County Council ; [in Swedish] 2000 :
10. Davies L. M., Drummond M. F.. Economics and schizophrenia: The real cost. British Journal of Psychiatry, 165. 1994 ;: 18-21
11. Dixon L.. Providing services to families of persons with schizophrenia: Present and future. Journal of Mental Health Policy and Economics. 1999 ; 2: 3-8
12. Dixon L. B., Dickerson F., Bellack A. S., Bennett M., Dickinson D., Goldberg R. W.,...Kreyenbuhl J.. The 2009 schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophrenia Bulletin. 2010 ; 36: 48-70
13. Dolan P., Roberts J.. Modelling valuations for EQ-5D health states: An alternative model using differences in valuations. Medical Care. 2002 ; 40: 442-446
14. Franks P., Muennig P., Lubetkin E., Jia H.. The burden of disease associated with being African-American in the United States and the contribution of socio-economic status. Social Science & Medicine. 2006 ; 62: 2469-2478
15. Gaite L., Vazquez-Barquero J. L., Herran A., Thornicroft G., Becker T., Sierra-Biddle D.. Main determinants of Global Assessment of Functioning score in schizophrenia: A European multicenter study. Comprehensive Psychiatry. 2005 ; 46: 440-446
16. Guest J. F., Cookson R. F.. Cost of schizophrenia to UK society. An incidence-based cost-of-illness model for the first 5 years following diagnosis. Pharmacoeconomics. 1999 ; 15: 597-610
17. Harvey K., Catty J., Langman A., Winfield H., Clement S., Burns E., Burns T.. A review of instruments developed to measure outcomes for carers of people with mental health problems. Acta Psychiatrica Scandinavica. 2008 ; 117: 164-176
18. Hoenig J., Hamilton M. W.. Elderly psychiatric patients and the burden on the household. Psychiatria et Neurologia (Basel). 1966 ; 152: 281-293
19. Honkonen T., Saarinen S., Salokangas R. K.. Deinstitutionalization and schizophrenia in Finland II: discharged patients and their psychosocial functioning. Schizophrenia Bulletin. 1999 ; 25: 543-551
20. Jeppesen P., Petersen L., Thorup A., Abel M. B., Oehlenschlaeger J., Christensen T. O., Nordentoft M.. Integrated treatment of first-episode psychosis: Effect of treatment on family burden: OPUS trial. British Journal of Psychiatry Supplement. 2005 ; 48: s85-90
21. Lamura G., Mnich E., Wojszel B., Nolan M., Krevers B., Mestheneos L.. The experience of family carers of older people in the use of support services in Europe: Selected findings from the EUROFAMCARE project. Zeitschrift für Gerontologie und Geriatrie. 2006 ; 39: 429-442
22. Lauber C., Keller C., Eichenberger A., Rossler W.. Family burden during exacerbation of schizophrenia: Quantification and determinants of additional costs. International Journal of Social Psychiatry. 2005 ; 51: 259-264
23. Lehman A. F., Steinwachs D. M.. Evidence-based psychosocial treatment practices in schizophrenia: Lessons from the patient outcomes research team (PORT) project. Journal of the American Academy of Psychoanalysis and Dynamic Psychiatry. 2003 ; 31: 141-154
24. Leucht S., Corves C., Arbter D., Engel R. R., Li C., Davis J. M.. Second-generation versus first-generation antipsychotic drugs for schizophrenia: A meta-analysis. Lancet. 2009 ; 373: 31-41
25. McKee K. J., Philp I., Lamura G., Prouskas C., Oberg B., Krevers B.. The COPE index: A first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people. Aging & Mental Health. 2003 ; 7: 39-52
26. Magliano L., Fadden G., Madianos M., de Almeida J. M., Held T., Guarneri M., Maj M.. Burden on the families of patients with schizophrenia: Results of the BIOMED I study. Social Psychiatry and Psychiatric Epidemiology. 1998 ; 33: 405-412
27. Max W., Webber P., Fox P.. Alzheimer's disease. The unpaid burden of caring. Journal of Aging and Health. 1995 ; 7: 179-199
28. Nordentoft M., Ohlenschlaeger J., Thorup A., Petersen L., Jeppesen P., Bertelsen M.. Deinstitutionalization revisited: A 5-year follow-up of a randomized clinical trial of hospital-based rehabilitation versus specialized assertive intervention (OPUS) versus standard treatment for patients with first-episode schizophrenia spectrum disorders. Psychological Medicine. 2010 ; 40: 1619-1626
29. Ochoa S., Haro J. M., Autonell J., Pendas A., Teba F., Marquez M.. Met and unmet needs of schizophrenia patients in a Spanish sample. Schizophrenia Bulletin. 2003 ; 29: 201-210
30. Ochoa S., Vilaplana M., Haro J. M., Villalta-Gil V., Martinez F., Negredo M. C.. Do needs, symptoms or disability of outpatients with schizophrenia influence family burden?. Social Psychiatry and Psychiatric Epidemiology. 2008 ; 43: 612-618
31. Opler M. G., Yang L. H., Caleo S., Alberti P.. Statistical validation of the criteria for symptom remission in schizophrenia: Preliminary findings. BMC Psychiatry. 2007 ; 7: 35
32. Pharoah F., Mari J., Rathbone J., Wong W.. Family intervention for schizophrenia. Cochrane Database of Systematic Reviews. 2010 ; 12 :
33. Placentino A., Rillosi L., Papa E., Foresti G., Materzanini A., Rossi G., Perez J.. Clinical characteristics in long-term care psychiatric patients: A descriptive study. World Journal of Biological Psychiatry. 2009 ; 10: 58-64
34. Rabin R., de Charro F.. EQ-5D: A measure of health status from the EuroQol Group. Annals of Medicine. 2001 ; 33: 337-343
35. Rantanen H., Koivisto A. M., Salokangas R. K., Helminen M., Oja H., Pirkola S., Joukamaa M.. Five-year mortality of Finnish schizophrenia patients in the era of deinstitutionalization. Social Psychiatry and Psychiatric Epidemiology. 2009 ; 44: 135-142
36. Reilly M. C., Bracco A., Ricci J. F., Santoro J., Stevens T.. The validity and accuracy of the Work Productivity and Activity Impairment questionnaire: Irritable bowel syndrome version (WPAI:IBS). Alimentary Pharmacology & Therapeutics. 2004 ; 20: 459-467
37. Ryu Y., Mizuno M., Sakuma K., Munakata S., Takebayashi T., Murakami M., Kashima H.. Deinstitutionalization of long-stay patients with schizophrenia: The 2-year social and clinical outcome of a comprehensive intervention program in Japan. Australian and New Zealand Journal of Psychiatry. 2006 ; 40: 462-470
38. Schwartz C., Gidron R.. Parents of mentally ill adult children living at home: Rewards of caregiving. Health & Social Work. 2002 ; 27: 145-154
39. Statistics Sweden, Household finances. Stockholm: Statistics Sweden ; 2008 :
40. Szmukler G. I., Burgess P., Herrman H., Benson A., Colusa S., Bloch S.. Caring for relatives with serious mental illness: The development of the Experience of Caregiving Inventory. Social Psychiatry and Psychiatric Epidemiology. 1996 ; 31: 137-148
41. van den Berg B., Brouwer W., van Exel J., Koopmanschap M., van den Bos G. A., Rutten F.. Economic valuation of informal care: Lessons from the application of the opportunity costs and proxy good methods. Social Science & Medicine. 2006 ; 62: 835-845
42. van den Berg B., Brouwer W. B., Koopmanschap M. A.. Economic valuation of informal care. An overview of methods and applications. European Journal of Health Economics. 2004 ; 5: 36-45
43. van den Berg B., Spauwen P.. Measurement of informal care: An empirical study into the valid measurement of time spent on informal caregiving. Health Economics. 2006 ; 15: 447-460
44. van Os J., Drukker M., à Campo J., Meijer J., Bak M., Delespaul P.. Validation of remission criteria for schizophrenia. American Journal of Psychiatry. 2006 ; 163: 2000-2002