Abstract
Schizophrenia is one of the most common and devastating mental disorders. Due to the possibility of relatively robust control over clinical symptoms, the focus of care for schizophrenia patients has shifted from institutionalized to community-based outpatient treatment options. While this change in paradigm allows affected individuals to socialize and take part in everyday activities, it has also increased the burden on family caregivers. At the same time, the interpretation of self-reported quality of life scores can be challenging due to known influencing factors like changes in internal standards, values, and goals. We present the theory of response shift as an adaptive mechanism that summarizes these complex changes and explains the seemingly contradicting long-term findings regarding quality of life ratings in informal caregivers. This state-of-the-art narrative review was undertaken to give an overview of the most critical factors that negatively impact the quality of life of caregivers and to summarize the current evidence, if any, of the response shifts in nonprofessional family caregivers. To our knowledge it is the first time that response shift and its impact on the quality of life in family caregivers of patients is reviewed in this way.
Keywords: Schizophrenia, quality of life, burden of care, response shift, relatives, mental disorder.
Graphical Abstract
[1]
Velligan DI, Weiden PJ, Sajatovic M, Scott J, Carpenter D, Ross R. The expert consensus guideline series:
adherence problems in patients with serious and
persistent mental illness. J Clin Psychiatry 2009; 4(1-46): 47-8.
[2]
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(3): 192-8.
[http://dx.doi.org/10.1111/j.1442-2018.2007.00327.x] [PMID: 17688477]
[http://dx.doi.org/10.1111/j.1442-2018.2007.00327.x] [PMID: 17688477]
[3]
Glozman JM. Quality of life of caregivers. Neuropsychol Rev 2004; 14(4): 183-96.
[http://dx.doi.org/10.1007/s11065-004-8158-5] [PMID: 15796115]
[http://dx.doi.org/10.1007/s11065-004-8158-5] [PMID: 15796115]
[4]
Schwartz CE, Sprangers MAG. Response shift.In: Encyclopedia of quality of life and well-being research. Dordrecht: Springer Netherlands 2014; pp. 5542-7.
[http://dx.doi.org/10.1007/978-94-007-0753-5_2508]
[http://dx.doi.org/10.1007/978-94-007-0753-5_2508]
[5]
Baethge C, Goldbeck-Wood S, Mertens S. SANRA-a scale for the quality assessment of narrative review articles. Res Integr Peer Rev 2019; 4(1): 5.
[http://dx.doi.org/10.1186/s41073-019-0064-8] [PMID: 30962953]
[http://dx.doi.org/10.1186/s41073-019-0064-8] [PMID: 30962953]
[6]
Awad AG, Voruganti LN. The burden of schizophrenia on caregivers: A review. PharmacoEconomics 2008; 26(2): 149-62.
[http://dx.doi.org/10.2165/00019053-200826020-00005] [PMID: 18198934]
[http://dx.doi.org/10.2165/00019053-200826020-00005] [PMID: 18198934]
[7]
Caqueo-Urízar A, Gutiérrez-Maldonado J, Ferrer-García M, Fernández-Dávila P. Quality of life of schizophrenia patients of Aymaran ethnic background in the north of Chile. Rev Psiquiatr Salud Ment 2012; 5(2): 121-6.
[http://dx.doi.org/10.1016/j.rpsmen.2012.01.006] [PMID: 22854583]
[http://dx.doi.org/10.1016/j.rpsmen.2012.01.006] [PMID: 22854583]
[8]
Zendjidjian XY, Boyer L. Challenges in measuring outcomes for caregivers of people with mental health problems. Dialogues Clin Neurosci 2014; 16(2): 159-69.
[http://dx.doi.org/10.31887/DCNS.2014.16.2/xzendjidjian] [PMID: 25152655]
[http://dx.doi.org/10.31887/DCNS.2014.16.2/xzendjidjian] [PMID: 25152655]
[9]
The national alliance on mental illness. Schizophrenia: Public attitudes, personal needs views from people living with schizophrenia, caregivers, and the general public analysis and recommendations. 2008. Available from: https://www.nami.org/Support-Education/Publications-Reports/Survey-Reports/SchizophreniaSurvey
[10]
Power M, Harper A, Bullinger M. The World Health Organization WHOQOL-100: Tests of the universality of Quality of Life in 15 different cultural groups worldwide. Health Psychol 1999; 18(5): 495-505.
[http://dx.doi.org/10.1037/0278-6133.18.5.495] [PMID: 10519466]
[http://dx.doi.org/10.1037/0278-6133.18.5.495] [PMID: 10519466]
[11]
Cooper C, Bebbington P, King M, et al. Why people do not take their psychotropic drugs as prescribed: results of the 2000 National Psychiatric Morbidity Survey. Acta Psychiatr Scand 2007; 116(1): 47-53.
[http://dx.doi.org/10.1111/j.1600-0447.2006.00974.x] [PMID: 17559600]
[http://dx.doi.org/10.1111/j.1600-0447.2006.00974.x] [PMID: 17559600]
[12]
Svettini A, Johnson B, Magro C, et al. Schizophrenia through the carers’ eyes: Results of a European cross-sectional survey. J Psychiatr Ment Health Nurs 2015; 22(7): 472-83.
[http://dx.doi.org/10.1111/jpm.12209] [PMID: 25944551]
[http://dx.doi.org/10.1111/jpm.12209] [PMID: 25944551]
[13]
Levene JE, Lancee WJ, Seeman MV. The perceived family burden scale: Measurement and validation. Schizophr Res 1996; 22(2): 151-7.
[http://dx.doi.org/10.1016/S0920-9964(96)00071-0]
[http://dx.doi.org/10.1016/S0920-9964(96)00071-0]
[14]
Boyer L, Baumstarck K, Boucekine M, Blanc J, Lançon C, Auquier P. Measuring quality of life in patients with schizophrenia: An overview. Expert Rev Pharmacoecon Outcomes Res 2013; 13(3): 343-9.
[http://dx.doi.org/10.1586/erp.13.15] [PMID: 23763531]
[http://dx.doi.org/10.1586/erp.13.15] [PMID: 23763531]
[15]
Caqueo-Urízar A, Alessandrini M, Urzúa A, Zendjidjian X, Boyer L, Williams DR. Caregiver’s quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia. Health Qual Life Outcomes 2017; 15(1): 76.
[http://dx.doi.org/10.1186/s12955-017-0652-6]
[http://dx.doi.org/10.1186/s12955-017-0652-6]
[16]
Ochoa S, Vilaplana M, Haro JM, et al. Do needs, symptoms or disability of outpatients with schizophrenia influence family burden? Soc Psychiatry Psychiatr Epidemiol 2008; 43(8): 612-8.
[http://dx.doi.org/10.1007/s00127-008-0337-x] [PMID: 18340397]
[http://dx.doi.org/10.1007/s00127-008-0337-x] [PMID: 18340397]
[17]
Stroup TS, Gray N. Management of common adverse effects of antipsychotic medications. World Psychiatry 2018; 17(3): 341-56.
[http://dx.doi.org/10.1002/wps.20567] [PMID: 30192094]
[http://dx.doi.org/10.1002/wps.20567] [PMID: 30192094]
[18]
Hsiao CY, Lu HL, Tsai YF. Caregiver burden and health-related quality of life among primary family caregivers of individuals with schizophrenia: A cross-sectional study. Qual Life Res 2020; 29(10): 2745-57.
[http://dx.doi.org/10.1007/s11136-020-02518-1] [PMID: 32394137]
[http://dx.doi.org/10.1007/s11136-020-02518-1] [PMID: 32394137]
[19]
Rhee TG, Rosenheck RA. Does improvement in symptoms and quality of life in chronic schizophrenia reduce family caregiver burden? Psychiatry Res 2019; 271: 402-4.
[http://dx.doi.org/10.1016/j.psychres.2018.12.005] [PMID: 30530058]
[http://dx.doi.org/10.1016/j.psychres.2018.12.005] [PMID: 30530058]
[20]
Caqueo-Urízar A, Gutiérrez-Maldonado J. Burden of care in families of patients with schizophrenia. Qual Life Res 2006; 15(4): 719-24.
[http://dx.doi.org/10.1007/s11136-005-4629-2] [PMID: 16688504]
[http://dx.doi.org/10.1007/s11136-005-4629-2] [PMID: 16688504]
[21]
Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: A theoretical model. Soc Sci Med 1999; 48(11): 1507-15.
[http://dx.doi.org/10.1016/S0277-9536(99)00045-3] [PMID: 10400253]
[http://dx.doi.org/10.1016/S0277-9536(99)00045-3] [PMID: 10400253]
[22]
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(11): 899-904.
[http://dx.doi.org/10.1007/s00127-005-0963-5] [PMID: 16245190]
[http://dx.doi.org/10.1007/s00127-005-0963-5] [PMID: 16245190]
[23]
Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry 2002; 17(2): 184-8.
[http://dx.doi.org/10.1002/gps.561] [PMID: 11813283]
[http://dx.doi.org/10.1002/gps.561] [PMID: 11813283]
[24]
Valenstein M, Blow FC, Copeland LA, et al. Poor antipsychotic adherence among patients with schizophrenia: Medication and patient factors. Schizophr Bull 2004; 30(2): 255-64.
[http://dx.doi.org/10.1093/oxfordjournals.schbul.a007076] [PMID: 15279044]
[http://dx.doi.org/10.1093/oxfordjournals.schbul.a007076] [PMID: 15279044]
[25]
Ahn J, McCombs JS, Jung C, et al. Classifying patients by antipsychotic adherence patterns using latent class analysis: characteristics of nonadherent groups in the California Medicaid (Medi-Cal) program. Value Health 2008; 11(1): 48-56.
[http://dx.doi.org/10.1111/j.1524-4733.2007.00214.x] [PMID: 18237360]
[http://dx.doi.org/10.1111/j.1524-4733.2007.00214.x] [PMID: 18237360]
[26]
Szmukler GI, Herrman H, Colusa S, Benson A, Bloch S. A controlled trial of a counselling intervention for caregivers of relatives with schizophrenia. Soc Psychiatr Epidemiol 1996; 31(3-4): 149-55.
[http://dx.doi.org/10.1007/BF00785761] [PMID: 8766460]
[http://dx.doi.org/10.1007/BF00785761] [PMID: 8766460]
[27]
Boyer L, Caqueo-Urízar A, Richieri R, Lancon C, Gutiérrez-Maldonado J, Auquier P. Quality of life among caregivers of patients with schizophrenia: A cross-cultural comparison of Chilean and French families. BMC Fam Pract 2012; 13(42): 42.
[http://dx.doi.org/10.1186/1471-2296-13-42] [PMID: 22640267]
[http://dx.doi.org/10.1186/1471-2296-13-42] [PMID: 22640267]
[28]
Cengiz Z, Turan M, Olmaz D, Erce Ç. Care burden and quality of life in family caregivers of palliative care patients. J Soc Work End Life Palliat Care 2021; 17(1): 50-63.
[http://dx.doi.org/10.1080/15524256.2021.1888844] [PMID: 33691608]
[http://dx.doi.org/10.1080/15524256.2021.1888844] [PMID: 33691608]
[29]
Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res 2004; 13(2): 299-310.
[http://dx.doi.org/10.1023/B:QURE.0000018486.91360.00] [PMID: 15085902]
[http://dx.doi.org/10.1023/B:QURE.0000018486.91360.00] [PMID: 15085902]
[30]
Ciałkowska, M, Hadryś, T, Kiejna A. Involvement evaluation questionnaire-charakterystyka i zastosowanie. Psychiatr Pol 2009; 43(4): 435-33.
[31]
Richieri R, Boyer L, Reine G, et al. The Schizophrenia Caregiver Quality of Life questionnaire (S-CGQoL): Development and validation of an instrument to measure quality of life of caregivers of individuals with schizophrenia. Schizophr Res 2011; 126(1-3): 192-201.
[http://dx.doi.org/10.1016/j.schres.2010.08.037] [PMID: 20850951]
[http://dx.doi.org/10.1016/j.schres.2010.08.037] [PMID: 20850951]
[32]
Boucekine M, Boyer L, Baumstarck K, Millier A, Ghattas B, Auquier P. Exploring the response shift effect on the quality of life of patients with schizophrenia: an application of the random forest method. Med Decis Making 2015; 35(3): 388-97.
[http://dx.doi.org/10.1177/0272989X14559273]
[http://dx.doi.org/10.1177/0272989X14559273]
[33]
Schwartz CE, Bode R, Repucci N, Becker J, Sprangers MA, Fayers PM. The clinical significance of adaptation to changing health: A meta-analysis of response shift. Qual Life Res 2006; 15(9): 1533-50.
[http://dx.doi.org/10.1007/s11136-006-0025-9]
[http://dx.doi.org/10.1007/s11136-006-0025-9]
[34]
Awad AG, Voruganti LN, Heslegrave RJ. Measuring quality of life in patients with schizophrenia. PharmacoEconomics 1997; 11(1): 32-47.
[http://dx.doi.org/10.2165/00019053-199711010-00005] [PMID: 10172917]
[http://dx.doi.org/10.2165/00019053-199711010-00005] [PMID: 10172917]
[35]
Schene AH, Tessler RC, Gamache GM. Instruments measuring family or caregiver burden in severe mental illness. Soc Psychiatry Psychiatr Epidemiol 1994; 29(5): 228-40.
[http://dx.doi.org/10.1007/BF00796381] [PMID: 7992146]
[http://dx.doi.org/10.1007/BF00796381] [PMID: 7992146]
[36]
Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48(8): 977-88.
[http://dx.doi.org/10.1016/S0277-9536(98)00411-0] [PMID: 10390038]
[http://dx.doi.org/10.1016/S0277-9536(98)00411-0] [PMID: 10390038]
[37]
Vanier A, Oort FJ, McClimans L, et al. Response shift in patient-reported outcomes: definition, theory, and a revised model. Qual Life Res 2021; 30(12): 3309-22.
[http://dx.doi.org/10.1007/s11136-021-02846-w] [PMID: 33909187]
[http://dx.doi.org/10.1007/s11136-021-02846-w] [PMID: 33909187]
[38]
Ilie G, Bradfield J, Moodie L, et al. The role of response-shift in studies assessing quality of life outcomes among cancer patients: A systematic review. Front Oncol 2019; 9: 783.
[http://dx.doi.org/10.3389/fonc.2019.00783] [PMID: 31482068]
[http://dx.doi.org/10.3389/fonc.2019.00783] [PMID: 31482068]
[39]
Bastianelli A, Gius E, Cipolletta S. Changes over time in the quality of life, prolonged grief and family strain of family caregivers of patients in vegetative state: A pilot study. J Health Psychol 2016; 21(5): 844-52.
[40]
Cipolletta S, Gius E, Bastianelli A. How the burden of caring for a patient in a vegetative state changes in relation to different coping strategies. Brain Inj 2014; 28(1): 92-6.
[http://dx.doi.org/10.3109/02699052.2013.857789] [PMID: 24328804]
[http://dx.doi.org/10.3109/02699052.2013.857789] [PMID: 24328804]
[41]
Chiambretto P, Moroni L, Guarnerio C, Bertolotti G, Prigerson HG. Prolonged grief and depression in caregivers of patients in vegetative state. Brain Inj 2010; 24(4): 581-8.
[http://dx.doi.org/10.3109/02699051003610490] [PMID: 20235760]
[http://dx.doi.org/10.3109/02699051003610490] [PMID: 20235760]
[42]
James K, Chin-Bailey C, Holder-Nevins D, Thompson C, Donaldson-Davis K, Eldemire-Shearer D. Zarit burden interview among caregivers of community-dwelling older adults in a caribbean setting (Jamaica): Reliability and factor structure. Health Soc Care Community 2021; 29(5): e79-88.
[http://dx.doi.org/10.1111/hsc.13244] [PMID: 33252838]
[http://dx.doi.org/10.1111/hsc.13244] [PMID: 33252838]
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