Skip to main content

Advertisement

Log in

Burden of caregivers of adult patients with schizophrenia in a predominantly African ancestry population

  • Published:
Quality of Life Research Aims and scope Submit manuscript

A Correction to this article was published on 11 January 2019

This article has been updated

Abstract

Purpose

There is relative inattention to caregiving burden in black populations in developing economies. This study seeks to assess the level of perceived burden and social determinants of burden of care in caregivers of adult patients with schizophrenia.

Methods

In this cross-sectional study, 115 dyads of patients with schizophrenia caregivers attending public mental health clinics were consecutively recruited. Burden of care was evaluated using the 22-item Zarit Burden Scale (maximum score, 88). Multiple linear regression model explored factors associated with caregiver burden.

Results

Caregivers were predominantly females (75.7 %) and were on average 50.8 ± 15.0 years. Most patients with schizophrenia were males (65.2 %) and were on average 43.6 ± 17.2 years old. Caregivers showed on average, mild-to-moderate burden (score, 30.0 ± 14.7; median, 28.0). There was tendency for caregivers of patients who were parents or spouses to have higher levels of burden. In multivariable analyses, higher burden of caregiving was associated with patient’s inability to perform self-care (B ± SE, 5.12 ± 1.40; p = 0.0001), closer kinship and higher numbers of psychotic episodes in previous year. The length of caregiving relationship was inversely related.

Conclusions

Poorer functioning and demographic factors were important determinants of caregiver burden. Community mental health services should include self-care interventions in rehabilitation programs in Jamaica.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Change history

  • 11 January 2019

    In the original publication, the co-author name Kelly-Marie Chen was misspelled and Shenae Miller was missed in the author group. The correct author group has been provided in this correction.

  • 11 January 2019

    In the original publication, the co-author name Kelly-Marie Chen was misspelled and Shenae Miller was missed in the author group. The correct author group has been provided in this correction.

References

  1. Kessler, R. C., Chiu, W. T., Demler, O., Merikangas, K. R., & Walters, E. E. (2005). Prevalence, severity, a comorbidity of 12-month DSM-IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 617–627.

    Article  PubMed Central  PubMed  Google Scholar 

  2. Hickling, F. W. (2005). The epidemiology of schizophrenia and other common mental health disorders in the English-speaking Caribbean. Revista Panamericana de Salud Publica, 18, 256–262.

    Article  PubMed  Google Scholar 

  3. Carlborg, A., Winnerback, K., Jonsson, E. G., Jokinen, J., & Nordstrom, P. (2010). Suicide in schizophrenia. Expert Review of Neurotherapeutics, 10, 1153–1164.

    Article  PubMed  Google Scholar 

  4. Andreasen, N. C., Carpenter, W. T, Jr, Kane, J. M., Lasser, R. A., Marder, S. R., & Weinberger, D. R. (2005). Remission in schizophrenia: Proposed criteria and rationale for consensus. American Journal of Psychiatry, 162, 441–449.

    Article  PubMed  Google Scholar 

  5. Dillehay, R. C., & Sandys, M. R. (1990). Caregivers for Alzheimer’s patients: What we are learning from research. International Journal of Aging and Human Development, 30, 263–285.

    Article  CAS  PubMed  Google Scholar 

  6. Hoenig, J., & Hamilton, M. W. (1966). The schizophrenic patient in the community and his effect on the household. International Journal of Social Psychiatry, 12, 165–176.

    Article  CAS  PubMed  Google Scholar 

  7. Logdberg, B., Nilsson, L. L., Levander, M. T., & Levander, S. (2004). Schizophrenia, neighbourhood, and crime. Acta Psychiatrica Scandinavica, 110, 92–97.

    Article  CAS  PubMed  Google Scholar 

  8. McDonell, M. G., Short, R. A., Berry, C. M., & Dyck, D. G. (2003). Burden in schizophrenia caregivers: Impact of family psychoeducation and awareness of patient suicidality. Family Process, 42, 91–103.

    Article  PubMed  Google Scholar 

  9. Bonnel, W. B. (1996). Not gone and not forgotten: A spouse’s experience of late-stage Alzheimer’s disease. Journal of Psychosocial Nursing and Mental Health Services, 34, 23–27.

    CAS  PubMed  Google Scholar 

  10. Stommel, M., Collins, C. E., & Given, B. A. (1994). The costs of family contributions to the care of persons with dementia. Gerontologist, 34, 199–205.

    Article  CAS  PubMed  Google Scholar 

  11. Gibbons, J. S., Horn, S. H., Powell, J. M., & Gibbons, J. L. (1984). Schizophrenic patients and their families. A survey in a psychiatric service based on a DGH unit. British Journal of Psychiatry, 144, 70–77.

    Article  CAS  PubMed  Google Scholar 

  12. Winefield, H. R., & Harvey, E. J. (1994). Needs of family caregivers in chronic schizophrenia. Schizophrenia Bulletin, 20, 557–566.

    Article  CAS  PubMed  Google Scholar 

  13. Zahid, M. A., & Ohaeri, J. U. (2010). Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia. BMC Psychiatry, 10, 71.

    Article  PubMed Central  PubMed  Google Scholar 

  14. Adeosun, I. I. (2013). Correlates of caregiver burden among family members of patients with schizophrenia in Lagos, Nigeria. Schizophrenia Research and Treatment, 2013, 353809.

    PubMed Central  PubMed  Google Scholar 

  15. Ohaeri, J. U. (2001). Caregiver burden and psychotic patients’ perception of social support in a Nigerian setting. Social Psychiatry and Psychiatric Epidemiology, 36, 86–93.

    Article  CAS  PubMed  Google Scholar 

  16. Caqueo-Urizar, A., Gutierrez-Maldonado, J., & Miranda-Castillo, C. (2009). Quality of life in caregivers of patients with schizophrenia: A literature review. Health and Quality of Life Outcomes, 7, 84.

    Article  PubMed Central  PubMed  Google Scholar 

  17. Caqueo-Urizar, A., Miranda-Castillo, C., Lemos, G. S., Maturana, S. L. L., Ramirez, P. M., & Mascayano, T. F. (2014). An updated review on burden on caregivers of schizophrenia patients. Psicothema, 26, 235–243.

    PubMed  Google Scholar 

  18. Awad, A. G., & Voruganti, L. N. (2008). The burden of schizophrenia on caregivers: A review. Pharmacoeconomics, 26, 149–162.

    Article  PubMed  Google Scholar 

  19. Rosenfarb, I. S., Bellack, A. S., & Aziz, N. (2006). A sociocultural stress, appraisal, and coping model of subjective burden and family attitudes toward patients with schizophrenia. Journal of Abnormal Psychology, 115, 157–165.

    Article  PubMed  Google Scholar 

  20. Lefley, H. P. (1998). The family experience in cultural context: Implications for further research and practice. New Directions for Mental Health Services, 77, 97–106.

    Article  PubMed  Google Scholar 

  21. Stueve, A., Vine, P., & Struening, E. L. (1997). Perceived burden among caregivers of adults with serious mental illness: Comparison of black, Hispanic, and white families. American Journal of Orthopsychiatry, 67, 199–209.

    Article  CAS  PubMed  Google Scholar 

  22. American Psychiatric Association. (1994). DSM-IV: Diagnostic and statistical manual of mental disorders. Washington, DC: APA.

    Google Scholar 

  23. 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  PubMed  Google Scholar 

  24. Grandon, P., Jenaro, C., & Lemos, S. (2008). Primary caregivers of schizophrenia outpatients: Burden and predictor variables. Psychiatry Research, 158, 335–343.

    Article  PubMed  Google Scholar 

  25. Gutierrez-Maldonado, J., Caqueo-Urizar, A., & Kavanagh, D. J. (2005). Burden of care and general health in families of patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 40, 899–904.

    Article  PubMed  Google Scholar 

  26. van Wijngaarden, B., Schene, A. H., Koeter, M., Vazquez-Barquero, J. L., Knudsen, H. C., Lasalvia, A., et al. (2000). Caregiving in schizophrenia: Development, internal consistency and reliability of the Involvement Evaluation Questionnaire-European Version. EPSILON Study 4. European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. The British Journal of Psychiatry, 177(Suppl. 39), s21–s27.

    Article  Google Scholar 

  27. Szmukler, G. I., Burgess, P., Herrman, H., Benson, A., Colusa, S., & Bloch, S. (1996). Caring for relatives with serious mental illness: The development of the Experience of Caregiving Inventory. Social Psychiatry and Psychiatric Epidemiology, 31, 137–148.

    Article  CAS  PubMed  Google Scholar 

  28. Gater, A., Rofail, D., Tolley, C., Marshall, C., Abetz-Webb, L., Zarit, S. H., & Berardo, C. G. (2014). “Sometimes it’s difficult to have a normal life”: Results from a qualitative study exploring caregiver burden in schizophrenia. Schizophrenia Research and Treatment, 2014, 368215.

    Article  PubMed Central  PubMed  Google Scholar 

  29. Chien, W. T., Chan, S. W., & Morrissey, J. (2007). The perceived burden among Chinese family caregivers of people with schizophrenia. Journal of Clinical Nursing, 16, 1151–1161.

    Article  PubMed  Google Scholar 

  30. Kumar, C. N., Suresha, K. K., Thirthalli, J., Arunachala, U., & Gangadhar, B. N. (2014). Caregiver burden is associated with disability in schizophrenia: Results of a study from a rural setting of south India. International Journal of Social Psychiatry, 61(12), 157–163.

    Google Scholar 

  31. Dixon, L., Adams, C., & Lucksted, A. (2000). Update on family psychoeducation for schizophrenia. Schizophrenia Bulletin, 26, 5–20.

    Article  CAS  PubMed  Google Scholar 

  32. Schofield, H. L., Murphy, B., Herrman, H. E., Bloch, S., & Singh, B. (1997). Family caregiving: Measurement of emotional well-being and various aspects of the caregiving role. Psychological Medicine, 27, 647–657.

    Article  CAS  PubMed  Google Scholar 

  33. Millier, A., Schmidt, U., Angermeyer, M. C., Chauhan, D., Murthy, V., Toumi, M., & Cadi-Soussi, N. (2014). Humanistic burden in schizophrenia: A literature review. Journal of Psychiatric Research, 54, 85–93.

    Article  CAS  PubMed  Google Scholar 

  34. National Alliance on Mental Illness (2008). Schizophrenia: Public attitudes, personal needs (pp. 1–18). Retrieved April 6, 2014, from https://www.nami.org.

  35. Kate, N., Grover, S., Kulhara, P., & Nehra, R. (2013). Caregiving appraisal in schizophrenia: A study from India. Social Science and Medicine, 98, 135–140.

    Article  PubMed  Google Scholar 

  36. Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. Lancet, 367, 528–529.

    Article  PubMed  Google Scholar 

  37. Gelkopf, M., & Roe, D. (2014). Evaluating outcome domains assessing caregivers of individuals with mental illness: A review. Family Process, 53, 150–174.

    Article  PubMed  Google Scholar 

  38. Schene, A. H., van Wijngaarden, B., & Koeter, M. W. (1998). Family caregiving in schizophrenia: Domains and distress. Schizophrenia Bulletin, 24, 609–618.

    Article  CAS  PubMed  Google Scholar 

  39. Magliano, L., Fadden, G., Economou, M., Held, T., Xavier, M., Guarneri, M., et al. (2000). Family burden and coping strategies in schizophrenia: 1-Year follow up data from the BIOMED I study. Social Psychiatry and Psychiatric Epidemiology, 35, 109–115.

    Article  CAS  PubMed  Google Scholar 

  40. Tucker, C., Barker, A., & Gregoire, A. (1998). Living with schizophrenia: Caring for a person with a severe mental illness. Social Psychiatry and Psychiatric Epidemiology, 33, 305–309.

    Article  CAS  PubMed  Google Scholar 

  41. Koujalgi, S. R., & Patil, S. R. (2013). Family burden in patient with schizophrenia and depressive disorder: A comparative study. Indian Journal of Psychological Medicine, 35, 251–255.

    Article  PubMed Central  PubMed  Google Scholar 

  42. Caqueo-Urizar, A., & Gutierrez-Maldonado, J. (2006). Burden of care in families of patients with schizophrenia. Quality of Life Research, 15, 719–724.

    Article  PubMed  Google Scholar 

  43. Durmaz, H., & Okanli, A. (2014). Investigation of the effect of self-efficacy levels of caregiver family members of the individuals with schizophrenia on burden of care. Archives of Psychiatric Nursing, 28, 290–294.

    Article  PubMed  Google Scholar 

  44. Aggarwal, M., Avasthi, A., Kumar, S., & Grover, S. (2011). Experience of caregiving in schizophrenia: A study from India. International Journal of Social Psychiatry, 57, 224–236.

    Article  PubMed  Google Scholar 

  45. vanWijngaarden, B., Schene, A., Koeter, M., Becker, T., Knapp, M., Knudsen, H. C., et al. (2003). People with schizophrenia in five countries: Conceptual similarities and intercultural differences in family caregiving. Schizophrenia Bulletin, 29, 573–586.

    Article  Google Scholar 

Download references

Acknowledgments

We acknowledge the invaluable contribution to caregivers and patients.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Maria D. Jackson.

Ethics declarations

Disclosure of potential conflicts of interest

The authors declare that they have no conflict of interest.

Ethical approval

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.

Informed consent

Informed consent was obtained from all participants before their inclusion in the study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Alexander, G., Bebee, CE., Chen, KM. et al. Burden of caregivers of adult patients with schizophrenia in a predominantly African ancestry population. Qual Life Res 25, 393–400 (2016). https://doi.org/10.1007/s11136-015-1077-5

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-015-1077-5

Keywords

Navigation