Abstract
Up to 50% of patients with schizophrenia disorder live with family. Family, as informal, unpaid caregivers, provide support for patients by assisting with activities of daily living, illness management, financial assistance, emotional support, and more. The high resource demand caregiving activities entail take a toll on caregivers’ mental health and wellbeing. As the wellbeing of caregivers is significantly associated with improved patients’ symptom management, increased service utilization, reduced hospitalizations, and relapse reduction, improving the mental health and wellbeing of caregivers should be priority. The aim of this review is to provide a unique summary of the last 20 years of literature focusing on the mental health and wellbeing of family caregivers of patients with schizophrenia disorder in developed countries through searching of five databases, including MedLine, Web of Science, ProQuest, PsycInfo, and Embase, using keywords related to schizophrenia, caregiving, and mental health. Findings indicated that caregivers’ mental health and wellbeing was affected by increased burden, escalated emotional and physical stress, decreased quality of life due to declining social lives, safety concerns, and lacking formal and informal support. However, findings also indicate that enhancing coping skills and consideration of the positive aspects of caregiving served to ameliorate these effects. This review supports the call for more programs and interventions targeting caregiving-associated stress and burden, the mobilization of formal and informal support, and enhancement of coping skills and resiliency, are required to improve mental health and wellbeing among caregivers.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Ashcroft, K., Kim, E., Elefant, E., Benson, C., & Carter, J. A. (2018). Meta-analysis of caregiver-directed psychosocial interventions for schizophrenia. Community Mental Health Journal, 54(7), 983–991. https://doi.org/10.1007/s10597-018-0289-x
Awad, A. G., & Voruganti, L. N. P. (2008). The burden of schizophrenia a review. PharmacoEconomics, 26(2), 149–162.
Batchelor, R., Gulshan, S., Shritharan, H., Williams, E., Henderson, C., Gillard, S., Woodham, L. A., Cornelius, V., Elkes, J., & Sin, J. (2022). Perceived acceptability and experiences of a digital psychoeducation and peer support intervention (COPe-support): Interview study with carers supporting individuals with psychosis. Journal of Medical Internet Research, 24(2), e27781. https://doi.org/10.2196/27781
Bombard, Y., Baker, G. R., Orlando, E., Fancott, C., Bhatia, P., Casalino, S., Onate, K., Denis, J. L., & Pomey, M. P. (2018). Engaging patients to improve quality of care: A systematic review. Implementation Science, 13(18). https://doi.org/10.1186/s13012-018-0784-z
Brain, C., Kymes, S., DiBenedetti, D. B., Brevig, T., & Velligan, D. I. (2018). Experiences, attitudes, and perceptions of caregivers of individuals with treatment-resistant schizophrenia: A qualitative study. BMC Psychiatry, 18(1), 1–13. https://doi.org/10.1186/s12888-018-1833-5
Bremmers, L. G. M., Fabbricotti, I. N., Gräler, E. S., Uyl-De Groot, C. A., & Hakkaart-Van Roijen, L. (2022). Assessing the impact of caregiving on informal caregivers of adults with a mental disorder in OECD countries: A systematic literature review of concepts and their respective questionnaires. PLoS ONE, 17(7), 1–28. https://doi.org/10.1371/journal.pone.0270278
Brighton, R. M., Patterson, C., Taylor, E., Moxham, L., Perlman, D., Sumskis, S., & Heffernan, T. (2016). The effect of respite services on carers of individuals with severe mental illness. Journal of Psychosocial Nursing and Mental Health Services, 54(12), 33–38. https://doi.org/10.3928/02793695-20161208-07
Budiono, W., Kantono, K., Kristianto, F. C., Avanti, C., & Herawati, F. (2021). Psychoeducation improved illness perception and expressed emotion of family caregivers of patients with schizophrenia. International Journal of Environmental Research and Public Health, 18(14), 7522. https://doi.org/10.3390/ijerph18147522
Caqueo-Urízar, A., Gutiérrez-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). https://doi.org/10.1186/1477-7525-7-84
Carbonell, Á., Navarro-Pérez, J. J., & Mestre, M. V. (2020). Challenges and barriers in mental healthcare systems and their impact on the family: A systematic integrative review. Health and Social Care in the Community, 28(5), 1366–1379. https://doi.org/10.1111/hsc.12968
Chan, S. W. C. (2011). Global perspective of burden of family caregivers for persons with schizophrenia. Archives of Psychiatric Nursing, 25(5), 339–349. https://doi.org/10.1016/j.apnu.2011.03.008
Cleary, M., West, S., Hunt, G. E., McLean, L., & Kornhaber, R. (2020). A qualitative systematic review of caregivers’ experiences of caring for family diagnosed with schizophrenia. Issues in Mental Health Nursing, 41(8), 667–683. https://doi.org/10.1080/01612840.2019.1710012
Donnelly, P. L. (2005). Mental health beliefs and help seeking behaviors of Korean American parents of adult children with schizophrenia. Journal of Allergy and Clinical Immunology, 2, 23–34. https://doi.org/10.1016/j.jaci.2012.05.050
Duman, Z. C., San, A., & Tuncer, G. Z. (2022). Calgary family intervention model-based family support and psychoeducation related intervention experiences of family members caring for patients with a chronic mental illness: “We Are All in the Same Boat.” Issues in Mental Health Nursing, 43(10), 929–935. https://doi.org/10.1080/01612840.2022.2072550
Galletly, C., Castle, D., Dark, F., Humberstone, V., Jablensky, A., Killackey, E., Kulkarni, J., McGorry, P., Nielssen, O., & Tran, N. (2016). Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the management of schizophrenia and related disorders. The Australian and New Zealand Journal of Psychiatry, 50(5), 410–472. https://doi.org/10.1177/0004867416641195
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, 1–13. https://doi.org/10.1155/2014/368215
Gérain, P., & Zech, E. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in Psychology, 10(1748). https://doi.org/10.3389/fpsyg.2019.01748
Gillieatt, S., Martin, R., Dorozenko, K. P., & Munro, A. (2018). Evaluation of a West Australian residential mental health respite service. Health and Social Care in the Community, 26(3), e442–e450. https://doi.org/10.1111/hsc.12545
Harvey, C. (2018). Family psychoeducation for people living with schizophrenia and their families. Bjpsych Advances, 24(1), 9–19. https://doi.org/10.1192/bja.2017.4
Hasan, A. A. H., & Jaber, A. A. (2019). The effect of a family intervention on primary caregivers psychological outcomes: Findings from the integrative literature review. Perspectives in Psychiatric Care, 55(2), 277–290. https://doi.org/10.1111/ppc.12339
Hayes, L., Hawthorne, G., Farhall, J., O’Hanlon, B., & Harvey, C. (2015). Quality of life and social isolation among caregivers of adults with schizophrenia: policy and outcomes. Community Mental Health Journal, 51(5), 591–597. https://doi.org/10.1007/s10597-015-9848-6
Henckes, N. (2019). Schizophrenia infrastructures: Local and global dynamics of transformation in psychiatric diagnosis-making in the twentieth and twenty-first centuries. Culture, Medicine and Psychiatry, 43(4), 548–573. https://doi.org/10.1007/s11013-019-09636-7
Hernandez, M., & Barrio, C. (2015). Perceptions of subjective burden among latino families caring for a loved one with schizophrenia. Community Mental Health Journal, 51(8), 939–948. https://doi.org/10.1007/s10597-015-9881-5
Hsiao, C. Y., Lu, H. L., Hsieh, M. H., & Tsai, Y. F. (2022). Effectiveness of a brief family strengths-oriented therapeutic conversation intervention for patients with schizophrenia and their caregivers. Journal of Nursing Scholarship, 54(2), 213–225. https://doi.org/10.1111/jnu.12741
James, R., & Tungol, J. (2021). Aggravating factors and adverse impacts of subjective burden of family caregivers of schizophrenia patients. Indian Journal of Health and Wellbeing, 12(4), 413–416.
James, R., & Tungol, J. (2022). Wellness enhancement therapy (WET) to reduce expressed emotion and subjective burden among the family caregivers of schizophrenia patients: A pilot study. Indian Journal of Positive Psychology, 13(1), 1–5.
Kung, W. W. (2003). The illness, stigma, culture, or immigration? Burdens on Chinese American caregivers of patients with schizophrenia. Families in Society, 84(4), 547–557. https://doi.org/10.1606/1044-3894.140
Landon, J., Pike, B., Diesfeld, K., & Shepherd, D. (2016). The experiences of parents providing support to adult children with schizophrenia. International Journal of Mental Health and Addiction, 14(4), 385–399. https://doi.org/10.1007/s11469-016-9643-9
Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. Springer.
Lerner, D., Chang, H., Rogers, W. H., Benson, C., Lyson, M. C., & Dixon, L. B. (2018). Psychological distress among caregivers of individuals with a diagnosis of schizophrenia or schizoaffective disorder. Psychiatric Services, 69(2), 169–178. https://doi.org/10.1176/appi.ps.201600422
Lök, N., & Bademli, K. (2021). The relationship between the perceived social support and psychological resilience in caregivers of patients with schizophrenia. Community Mental Health Journal, 57(2), 387–391. https://doi.org/10.1007/s10597-020-00665-w
Lowyck, B., De Hert, M., Peeters, E., Wampers, M., Gilis, P., & Peuskens, J. (2004). A study of the family burden of 150 family members of schizophrenic patients. European Psychiatry, 19(7), 395–401. https://doi.org/10.1016/j.eurpsy.2004.04.006
Ma, C. F., Chan, S. K. W., Chien, W. T., Bressington, D., Mui, E. Y. W., Lee, E. H. M., & Chen, E. Y. H. (2020). Cognitive behavioural family intervention for people diagnosed with severe mental illness and their families: A systematic review and meta-analysis of randomized controlled trials. Journal of Psychiatric and Mental Health Nursing, 27(2), 128–139. https://doi.org/10.1111/jpm.12567
Mackay, C., & Pakenham, K. I. (2012). A stress and coping model of adjustment to caring for an adult with mental illness. Community Mental Health Journal, 48(4), 450–462. https://doi.org/10.1007/s10597-011-9435-4
Magaña, S. M., Ramírez García, J. I., Hernández, M. G., & Cortez, R. (2007). Psychological distress among Latino family caregivers of adults with schizophrenia: The roles of burden and stigma. Psychiatric Services, 58(3), 378–384. https://doi.org/10.1176/ps.2007.58.3.378
Mcauliffe, R., O’Connor, L., & Meagher, D. (2014). Parents’ experience of living with and caring for an adult son or daughter with schizophrenia at home in Ireland: A qualitative study. Journal of Psychiatric and Mental Health Nursing, 21(2), 145–153. https://doi.org/10.1111/jpm.12065
Mitsonis, C., Voussoura, E., Dimopoulos, N., Psarra, V., Kararizou, E., Latzouraki, E., Zervas, I., & Katsanou, M. N. (2012). Factors associated with caregiver psychological distress in chronic schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 47(2), 331–337. https://doi.org/10.1007/s00127-010-0325-9
Mueser, K. T., Achtyes, E. D., Gogate, J., Mancevski, B., Kim, E., & Starr, H. L. (2022). Telehealth-based psychoeducation for caregivers: The family intervention in recent-onset schizophrenia treatment study. JMIR Mental Health, 9(4), e32492. https://doi.org/10.2196/32492
Peng, M. M., Zhang, T. M., Liu, K. Z., Gong, K., Huang, C. H., Dai, G. Z., Hu, S. H., Lin, F. R., Chan, S. K. W., Ng, S., & Ran, M. S. (2019). Perception of social support and psychotic symptoms among persons with schizophrenia: A strategy to lessen caregiver burden. International Journal of Social Psychiatry, 65(7–8), 548–557. https://doi.org/10.1177/0020764019866230
Poon, W. C., Joubert, L., & Harvey, C. (2013). Experiences of Chinese migrants caring for family members with schizophrenia in Australia. Social Work in Health Care, 52(2–3), 144–165. https://doi.org/10.1080/00981389.2012.737907
Saunders, J. (2013). At wits’’ end": Perspectives of hispanic caregivers of a family member with schizophrenia. Issues in Mental Health Nursing, 34(6), 451–458. https://doi.org/10.3109/01612840.2012.741659
Semmer, N. K., Elfering, A., Jacobshagen, N., Perrot, T., Beehr, T. A., & Boos, N. (2008). The emotional meaning of instrumental social support. International Journal of Stress Management, 15(3), 235–251. https://doi.org/10.1037/1072-5245.15.3.235
Sjöström, N., Waern, M., Johansson, A., Weimand, B., Johansson, O., & Ewertzon, M. (2021). Relatives’ experiences of mental health care, family burden and family stigma: does participation in patient-appointed Resource Group Assertive Community Treatment (RACT) make a difference? Issues in Mental Health Nursing, 42(11), 1010–1019. https://doi.org/10.1080/01612840.2021.1924322
Suro, G., & Weisman de Mamani, A. G. (2013). Burden, interdependence, ethnicity, and mental health in caregivers of patients with schizophrenia. Family Process, 52(2), 299–311. https://doi.org/10.1111/famp.12002
Uchino, B. N., Bowen, K., Carlisle, M., & Birmingham, W. (2012). Psychological pathways linking social support to health outcomes: A visit with the “ghosts” of research past, present, and future. Social Science and Medicine, 74(7), 949–957. https://doi.org/10.1016/j.socscimed.2011.11.023
Velligan, D. I., Brain, C., Bouérat Duvold, L., & Agid, O. (2019). Caregiver burdens associated with treatment-resistant schizophrenia: A quantitative caregiver survey of experiences, attitudes, and perceptions. Frontiers in Psychiatry, 10(September), 1–12. https://doi.org/10.3389/fpsyt.2019.00584
Worrall, H., Schweizer, R., Marks, E., Yuan, L., Lloyd, C., & Ramjan, R. (2018). The effectiveness of support groups: A literature review. Mental Health and Social Inclusion, 22(2), 85–93. https://doi.org/10.1108/MHSI-12-2017-0055
Young, L., Digel Vandyk, A., Daniel Jacob, J., McPherson, C., & Murata, L. (2019). Being parent caregivers for adult children with schizophrenia. Issues in Mental Health Nursing, 40(4), 297–303. https://doi.org/10.1080/01612840.2018.1524531
Acknowledgements
All authors contributed to the study's conception and design. Material preparation, data collection, and analysis were performed by Alana Glecia and Hua Li. The first draft of the manuscript was written by Alana Glecia, and Hua Li provided critical feedback for revisions. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors have no financial or non-financial interests to disclose.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Glecia, A., Li, H. Mental health and wellbeing in family caregivers of patients with schizophrenia disorder: a literature review. Curr Psychol 43, 10914–10941 (2024). https://doi.org/10.1007/s12144-023-05220-w
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12144-023-05220-w