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Caregiver burden and health-related quality of life among primary family caregivers of individuals with schizophrenia: a cross-sectional study

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Abstract

Purpose

This study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient psychiatric rehabilitation facilities.

Methods

A cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample t test, one-way analysis of variance, and Pearson’s correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL.

Results

Primary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient’s severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively.

Conclusion

Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.

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Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Code availability

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Consent for publication

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References

  1. Lora, A., Kohn, R., Levav, I., McBain, R., Morris, J., & Saxena, S. (2012). Service availability and utilization and treatment gap for schizophrenic disorders: A survey in 50 low- and middle-income countries. Bulletin of the World Health Organization, 90(1), 47–54B. https://doi.org/10.2471/BLT.11.089284.

    Article  PubMed  Google Scholar 

  2. Killaspy, H., Marston, L., Green, N., Harrison, I., Lean, M., Holloway, F., et al. (2016). Clinical outcomes and costs for people with complex psychosis; a naturalistic prospective cohort study of mental health rehabilitation service uses in England. BMC Psychiatry, 16, 95. https://doi.org/10.1186/s12888-016-0797-6.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  3. Jagannathan, A., Thirthalli, J., Hamza, A., Nagendra, H. R., & Gangadhar, B. N. (2014). Predictors of family caregiver burden in schizophrenia: Study from an in-patient tertiary care hospital in India. Asian Journal of Psychiatry, 8, 94–98. https://doi.org/10.1016/j.ajp.2013.12.018.

    Article  PubMed  Google Scholar 

  4. Guan, L., Xiang, Y., Ma, X., Weng, Y., & Liang, W. (2016). Qualities of life of patients with psychotic disorders and their family caregivers: Comparison between hospitalised and community-based treatment in Beijing, China. PLoS ONE, 11(11), e0166811. https://doi.org/10.1371/journal.pone.0166811.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  5. Vermeulen, B., Lauwers, H., Spruytte, N., Van Audenhove, C., Magro, C., Saunders, J., & Jones, K. (2015). Experiences of family caregivers for persons with severe mental illness: An international exploration. Leuven: LUCAS KU Leuven/EUFAMI.

  6. Maeng, S. R., Kim, W. H., Kim, J. H., Bae, J. N., Lee, J. S., & Kim, C. E. (2016). Factors affecting quality of life and family burden among the families of patients with schizophrenia. Korean Journal of Schizophrenia Research, 19(2), 78–88. https://doi.org/10.16946/kjsr.2016.19.2.78.

    Article  Google Scholar 

  7. Stanley, S., Balakrishnan, S., & Ilangovan, S. (2017). Psychological distress, perceived burden, and quality of life in caregivers of persons with schizophrenia. Journal of Mental Health, 26(2), 134–141. https://doi.org/10.1080/09638237.2016.1276537.

    Article  PubMed  Google Scholar 

  8. Zeng, Y., Zhou, Y., & Lin, J. (2017). Perceived burden and quality of life in Chinese caregivers of people with serious mental illness: A comparison cross-sectional study. Perspectives in Psychiatric Care, 53(3), 183–189. https://doi.org/10.1111/ppc.12151.

    Article  PubMed  Google Scholar 

  9. World Federation of Mental Health (WFMH). (2010). Caring for the caregiver: Why your mental health matters when you are caring for others. Woodbridge, VA: WFMH.

    Google Scholar 

  10. Stanley, S., Balakrishnan, S., & Ilangovan, S. (2017). Correlates of caregiving burden in schizophrenia: A cross-sectional, comparative analysis from India. Social Work in Mental Health, 15(3), 284–307. https://doi.org/10.1080/15332985.2016.1220440.

    Article  Google Scholar 

  11. Gupta, S., Isherwood, G., Jones, K., & Impe, K. V. (2015). Assessing health status in informal schizophrenia caregivers compared with health status in non-caregivers and caregivers of other conditions. BMC Psychiatry, 15, 162. https://doi.org/10.1186/s12888-015-0547-1.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Ntsayagae, E. I., Poggenpoel, M., & Myburgh, C. (2019). Experiences of family caregivers of persons living with mental illness: A meta-synthesis. Curationis, 42(1), a1900. https://doi.org/10.4102/curationis.v42i1.1900.

    Article  Google Scholar 

  13. Souza, A., Guimarães, R. A., de Araújo Vilela, D., de Assis, R. M., de Almeida Cavalcante Oliveira, L. M., Souza, M. R., et al. (2017). Factors associated with the burden of family caregivers of patients with mental disorders: A cross-sectional study. BMC Psychiatry, 17(1), 353. https://doi.org/10.1186/s12888-017-1501-1.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Yu, Y., Liu, Z. W., Tang, B. W., Zhao, M., Liu, X. G., & Xiao, S. Y. (2017). Reported family burden of schizophrenia patients in rural China. PLoS ONE, 12(6), e0179425. https://doi.org/10.1371/journal.pone.0179425.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  15. Yazici, E., Karabulut, Ü., Yildiz, M., Tekes, S. B., İnan, E., Çakir, U., et al. (2016). Burden on caregivers of patients with schizophrenia and related factors. Archives of Neuropsychiatry, 53(2), 96–101. https://doi.org/10.5152/npa.2015.9963.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Siddiqui, S., & Khalid, J. (2019). Determining the caregivers’ burden in caregivers of patients with mental illness. Pakistan Journal of Medical Sciences, 35(5), 1329–1333. https://doi.org/10.12669/pjms.35.5.720.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Opoku-Boateng, Y. N., Kretchy, I. A., Aryeetey, G. C., Dwomoh, D., Decker, S., Agyemang, S. A., et al. (2017). Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana. BMC Health Services Research, 17(Suppl 2), 697. https://doi.org/10.1186/s12913-017-2642-0.

    Article  PubMed  PubMed Central  Google Scholar 

  18. The WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558.

    Article  Google Scholar 

  19. The WHOQOL Group. (1993). Measuring quality of life: The development of the World Health Organization Quality of Life instrument (WHOQOL). Geneva: WHO.

    Google Scholar 

  20. Ribé, J. M., Salamero, M., Pérez-Testor, C., Mercadal, J., Aguilera, C., & Cleris, M. (2018). Quality of life in family caregivers of schizophrenia patients in Spain: Caregiver characteristics, caregiving burden, family functioning, and social and professional support. International Journal of Psychiatry in Clinical Practice, 22(1), 25–33. https://doi.org/10.1080/13651501.2017.1360500.

    Article  PubMed  Google Scholar 

  21. Chen, L., Zhao, Y., Tang, J., Jin, G., Liu, Y., Zhao, X., et al. (2019). The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: A qualitative study. BMC Psychiatry, 19, 75. https://doi.org/10.1186/s12888-019-2052-4.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  22. Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing and Health, 13, 375–384.

    Article  CAS  Google Scholar 

  23. Park, E. O., & Schumacher, K. L., (2014). The state of the science of family caregiver–care receiver mutuality: A systematic review. Nursing Inquiry, 21(2), 140–152. https://doi.org/10.1111/nin.12032.

    Article  PubMed  Google Scholar 

  24. Katz-Saltzman, S., Biegel, D., & Townsend, A. (2008). The impact of caregiver–care recipient relationship quality on family caregivers of women with substance-use disorders or co-occurring substance and mental disorders. Journal of Family Social Work, 11(2), 141–165. https://doi.org/10.1080/10522150802169012.

    Article  Google Scholar 

  25. McCubbin, H. I., Olson, D., & Larsen, A. (1981). Family crisis oriented personal evaluation scales (F-COPES). In H. I. McCubbin, A. I. Thompson, & M. A. McCubbin (Eds.), Family assessment: Resiliency, coping and adaptation: Inventories for research and practice (pp. 455–507). Madison, WI: University of Wisconsin System.

    Google Scholar 

  26. Lazarus, R. (1996). Psychological stress and the coping process. New York: McGraw-Hill.

    Google Scholar 

  27. Rexhaj, S., Python, N. V., Morin, D., Bonsack, C., & Favrod, J. (2013). Correlational study: Illness representations and coping styles in caregivers for individuals with schizophrenia. Annals of General Psychiatry, 12(1), 27. https://doi.org/10.1186/1744-859X-12-27.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Kate, N., Grover, S., Kulhara, P., & Nehra, R. (2014). Relationship of quality of life with coping and burden in primary caregivers of patients with schizophrenia. International Journal of Social Psychiatry, 60(2), 107–116. https://doi.org/10.1177/0020764012467598.

    Article  PubMed  Google Scholar 

  29. Rahami, F., Ranjbar, F., Hosseinzadeh, M., Razavi, S. S., Dickens, G. L., & Vahidi, M. (2019). Coping strategies of family caregivers of patients with schizophrenia in Iran: A cross-sectional study. International Journal of Nursing Sciences, 16, 148–153. https://doi.org/10.1016/j.ijnss.2019.03.006.

    Article  Google Scholar 

  30. von Elm, E., Altman, D. G., Egger, M., Pocock, S. J., Gølzsche, P. C., Vandenbroucke, J. P., et al. (2014). The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. International Journal of Surgery, 12, 1495–1499. https://doi.org/10.1016/j.ijsu.2014.07.013.

    Article  Google Scholar 

  31. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.

    Book  Google Scholar 

  32. Shyu, Y. Y., Yang, C. T., Huang, C. C., Kuo, H. C., Chen, S. T., & Hu, W. C. (2010). Influence of mutuality, preparedness, and balance on caregivers of patients with dementia. Journal of Nursing Research, 18(3), 155–163. https://doi.org/10.1097/JNR.0b013e3181ed5845.

    Article  PubMed  Google Scholar 

  33. Tan, S., Yeoh, A. L., Choo, I. B., Huang, A. P., Ong, S. H., Ismail, H., et al. (2012). Burden and coping strategies experienced by caregivers of persons with schizophrenia in the community. Journal of Clinical Nursing, 21(17–18), 2410–2418. https://doi.org/10.1111/j.1365-2702.2012.04174.x.

    Article  PubMed  Google Scholar 

  34. Ko, K. T., Liu, S. I., & Huang, C. R. (2008). Chinese version of the Zarit caregiver Burden Interview: A validation study. American Journal of Geriatric Psychiatry, 16, 513–516. https://doi.org/10.1097/JGP.0b013e318167ae5b.

    Article  PubMed  Google Scholar 

  35. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20, 649–655.

    Article  CAS  Google Scholar 

  36. The WHOQOL Taiwan Version Development Group. (2005). WHOQOL-BREF Taiwan version—Development and handbook. Taipei: The WHOQOL-Taiwan Group.

    Google Scholar 

  37. Chang, T. J., Hwu, H. G., & Wei, F. O. (1986). Reliability of the Brief Psychiatric Rating Scale. Bulletin of Chinese Society of Neurology and Psychiatry, 12, 29–35. (in Chinese).

    Google Scholar 

  38. National Statistics, Republic of China (Taiwan). (2018). Report on the survey of family income and expenditure (in Chinese). https://win.dgbas.gov.tw/fies/e11.asp?year=107.

  39. Inogbo, C. F., Olotu, S. O., James, B. O., & Nna, E. K. (2017). Burden of care amongst caregivers who are first degree relatives of patients with schizophrenia. Pan African Medical Journal, 28, 284. https://doi.org/10.11604/pamj.2017.28.284.11574.

    Article  PubMed  Google Scholar 

  40. Yu, Y., Zhou, W., Liu, Z. W., Hu, M., Tan, Z. H., & Xiao, S. Y. (2019). Gender differences in caregiving among a schizophrenia population. Psychology Research and Behavior Management, 12, 7–13. https://doi.org/10.2147/PRBM.S187975.

    Article  PubMed  Google Scholar 

  41. Ochoa, S., Usall, J., Cobo, J., Labad, X., & Kulkarni, J. (2012). Gender differences in schizophrenia and first-episode psychosis: A comprehensive literature review. Schizophrenia Research and Treatment, 2012, 916198. https://doi.org/10.1155/2012/916198.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Yang, W. Y. (2016). Differences in gender-role attitudes between China and Taiwan. Asian Women, 32(4), 73–95. https://doi.org/10.14431/aw.2016.12.32.4.73.

    Article  CAS  Google Scholar 

  43. Eaton, P. M., Davis, B. L., Hammond, P. V., Condon, E. H., & McGee, Z. T. (2011). Coping strategies of family members of hospitalized psychiatric patients. Nursing Research and Practice. https://doi.org/10.1155/2011/392705.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Leng, A., Xu, C., Nicholas, S., Nicholas, J., & Wang, J. (2019). Quality of life in caregivers of a family member with serious mental illness: Evidence in China. Archives of Psychiatric Nursing, 33, 23–29. https://doi.org/10.1016/j.apnu.2018.08.010.

    Article  PubMed  Google Scholar 

  45. McFarlane, W. R. (2016). Family interventions for schizophrenia and the psychoses: A review. Family Process, 55(3), 460–482. https://doi.org/10.1111/famp.12235.

    Article  PubMed  Google Scholar 

  46. Sin, J., Gillard, S., Spain, D., Cornelius, V., Chen, T., & Henderson, C. (2017). Effectiveness of psychoeducational interventions for family carers of people with psychosis: A systematic review and meta-analysis. Clinical Psychological Review, 56, 13–24. https://doi.org/10.1016/j.cpr.2017.05.002.

    Article  Google Scholar 

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Funding

This work was supported in part by the Ministry of Science and Technology (No. 103-2410-H-040-007-MY2).

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Contributions

All authors have actively contributed to the work and meet the ICMJE criteria for authorship. CYH, HLL, and YFT designed the study. CYH and YFT analyzed and interpreted data. HLL helped collect data. All authors have seen and approved the final version of the manuscript being submitted.

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Correspondence to Yun-Fang Tsai.

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The authors declare no conflicts of interest.

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All procedures performed in studies involving human participants were in accordance with the Ethical Standards of the Institutional and/or National Research Committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the Ethics Committee of two psychiatric hospitals (CS 13257 and 14-021).

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Written informed consent was obtained from all participants included in the study.

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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 29, 2745–2757 (2020). https://doi.org/10.1007/s11136-020-02518-1

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