Skip to main content
SpringerLink
Log in

Living with schizophrenia: a phenomenological study of the lived experience of caregivers of patients suffering from schizophrenia in Iran

  • Published:
Current Psychology Aims and scope Submit manuscript

Abstract

Schizophrenia is one of the most debilitating mental disorders which can negatively affect patients and their families. This phenomenological study was undertaken to examine the lived experience of caregivers of schizophrenic patients in Tehran, Iran. Participants included 17 caregivers (males = 8 and females = 9) ranging in age from 29 to 80 years, who were selected using purposive sampling method. The semi-structured interview was used to collect the data. Colaizzi's seven-step method was followed to analyse the data. After analysing the data, three major domains emerged, experiences with schizophrenia, coping strategies, and unmet needs and expectations. As the results indicated, individuals with schizophrenia can cause various problems for caregivers and increase the caregiving burden. Accordingly, each caregiver employs coping strategies based on their conditions and still has unmet needs. Overall, findings indicate the need for facilitations and interventions to empower those living with schizophrenia, both caregivers and patients, to reduce the caregiving burden and improve the quality of life in both groups.

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

Access this article

Log in via an institution

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

Data availability

The authors confirm that all data generated or analysed during this study are included in this published article.

References

  • Abd El, S. A. E.-M., Abd El-Nabi, A. A., & Fathalla, H. E.-D. (2018). Resilience, burden, and quality of life in Egyptian family caregivers of patients with schizophrenia. Egyptian Nursing Journal, 15(2), 196

  • Addo, R., Agyemang, S. A., Tozan, Y., & Nonvignon, J. (2018). Economic burden of caregiving for persons with severe mental illness in sub-Saharan Africa: A systematic review. PLoS ONE, 13(8), e0199830.

    Article  PubMed  PubMed Central  Google Scholar 

  • Arun, R., Inbakamal, S., Tharyan, A., & Premkumar, P. S. (2018). Spousal caregiver burden and its relation with disability in schizophrenia. Indian Journal of Psychological Medicine, 40(1), 22–28.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ayalew, M., Workicho, A., Tesfaye, E., Hailesilasie, H., & Abera, M. (2019). Burden among caregivers of people with mental illness at Jimma University Medical Center, Southwest Ethiopia: A cross-sectional study. Annals of General Psychiatry, 18(1), 1–11.

    Article  Google Scholar 

  • Bademli, K., & Lök, N. (2020). Feelings, thoughts and experiences of caregivers of patients with schizophrenia. International Journal of Social Psychiatry, 66(5), 452–459.

    Article  PubMed  Google Scholar 

  • Bighelli, I., Rodolico, A., García-Mieres, H., Pitschel-Walz, G., Hansen, W.-P., Schneider-Thoma, J., Siafis, S., Wu, H., Wang, D., & Salanti, G. (2021). Psychosocial and psychological interventions for relapse prevention in schizophrenia: A systematic review and network meta-analysis. The Lancet Psychiatry, 8(11), 969–980.

    Article  PubMed  Google Scholar 

  • Camacho-Gomez, M., & Castellvi, P. (2020). Effectiveness of family intervention for preventing relapse in first-episode psychosis until 24 months of follow-up: A systematic review with meta-analysis of randomized controlled trials. Schizophrenia Bulletin, 46(1), 98–109.

    Article  PubMed  Google Scholar 

  • Chen, L., Zhao, Y., Tang, J., Jin, G., Liu, Y., Zhao, X., Chen, C., & Lu, X. (2019). The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: A qualitative study. BMC Psychiatry, 19, 1–10.

    Article  Google Scholar 

  • Desalegn, D., Girma, S., & Abdeta, T. (2020). Quality of life and its association with psychiatric symptoms and socio-demographic characteristics among people with schizophrenia: A hospital-based cross-sectional study. PLoS ONE, 15(2), e0229514.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ganguly, K., Chadda, R., & Singh, T. (2010). Caregiver burden and coping in schizophrenia and bipolar disorder: A qualitative study. American Journal of Psychiatric Rehabilitation, 13(2), 126–142.

    Article  Google Scholar 

  • Howes, O. D., Cummings, C., Chapman, G. E., & Shatalina, E. (2023). Neuroimaging in schizophrenia: An overview of findings and their implications for synaptic changes. Neuropsychopharmacology, 48(1), 151–167.

    Article  PubMed  Google Scholar 

  • Iseselo, M. K., Kajula, L., & Yahya-Malima, K. I. (2016). The psychosocial problems of families caring for relatives with mental illnesses and their coping strategies: A qualitative urban based study in Dar es Salaam Tanzania. BMC Psychiatry, 16(1), 1–12.

    Article  Google Scholar 

  • Kamil, S. H., & Velligan, D. I. (2019). Caregivers of individuals with schizophrenia: Who are they and what are their challenges? Current Opinion in Psychiatry, 32(3), 157–163.

    Article  PubMed  Google Scholar 

  • Kumar, R., Nischal, A., Dalal, P. K., Varma, S., Agarwal, M., Tripathi, A., Kar, S. K., & Gupta, B. (2020). Impact of brief psychosocial intervention on key relatives of patients with schizophrenia: A randomized controlled trial. Indian Journal of Psychiatry, 62(2), 137.

    Article  PubMed  PubMed Central  Google Scholar 

  • Li, J., Lambert, C. E., & Lambert, V. A. (2007). 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. Nursing & Health Sciences, 9(3), 192–198.

    Article  Google Scholar 

  • Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International Journal of Nursing Sciences, 7(4), 438–445.

    Article  PubMed  PubMed Central  Google Scholar 

  • Manesh, A. E., Dalvandi, A., & Zoladl, M. (2023). The experience of stigma in family caregivers of people with schizophrenia spectrum disorders: A meta-synthesis study. Heliyon, 9(3).

  • Mirghaed, M. T., Gorji, H. A., & Panahi, S. (2020). Prevalence of psychiatric disorders in Iran: a systematic review and meta-analysis. International journal of preventive medicine, 11.

  • Mohd, T. A. M. T., Yunus, R. M., Hairi, F., Hairi, N. N., & Choo, W. Y. (2019). Social support and depression among community dwelling older adults in Asia: A systematic review. British Medical Journal Open, 9(7), e026667.

    Google Scholar 

  • Ozen, M. E., Orum, M. H., & Kalenderoglu, A. (2018). The burden of schizophrenia on caregivers. Psychiatry and Behavioral Sciences, 8(3), 105.

    Google Scholar 

  • Peng, M.-M., Chen, H.-L., Zhang, T., Yao, Y.-Y., Li, Z.-H., Long, L., Duan, Q.-Q., Lin, F.-R., Zen, Y., & Chen, J. (2019). Disease-related stressors of caregiving burden among different types of family caregivers of persons with schizophrenia in rural China. International Journal of Social Psychiatry, 65(7–8), 603–614.

    Article  PubMed  Google Scholar 

  • Peng, M.-M., Ma, Z., & Ran, M.-S. (2022). Family caregiving and chronic illness management in schizophrenia: Positive and negative aspects of caregiving. BMC Psychology, 10(1), 83.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rahmani, 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 survey. International Journal of Nursing Sciences, 6(2), 148–153.

    Article  PubMed  PubMed Central  Google Scholar 

  • Safdari, R., Hamidi, M., Aghaee, M., & Ghazi Saeedi, M. (2017). Designing electronic card of health for schizophrenic patients. Payavard Salamat, 10(6), 479–487.

    Google Scholar 

  • Shamsaei, F., Cheraghi, F., & Bashirian, S. (2015). Burden on family caregivers caring for patients with schizophrenia. Iranian Journal of Psychiatry, 10(4), 239.

    PubMed  PubMed Central  Google Scholar 

  • Sharif, F., Shaygan, M., & Mani, A. (2012). Effect of a psycho-educational intervention for family members on caregiver burdens and psychiatric symptoms in patients with schizophrenia in Shiraz. Iran. BMC Psychiatry, 12, 1–9.

    Google Scholar 

  • Siddiqui, S., & Khalid, J. (2019). Determining the caregivers’ burden in caregivers of patients with mental illness. Pakistan Journal of Medical Sciences, 35(5), 1329.

    Article  PubMed  PubMed Central  Google Scholar 

  • Stanley, S., Balakrishnan, S., & Ilangovan, S. (2017a). Correlates of caregiving burden in schizophrenia: A cross-sectional, comparative analysis from India. Social Work in Mental Health, 15(3), 284–307.

    Article  Google Scholar 

  • Stanley, S., Balakrishnan, S., & Ilangovan, S. (2017b). Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia. Journal of Mental Health, 26(2), 134–141.

    Article  PubMed  Google Scholar 

  • Stanley, S., Bhuvaneswari, G. M., & Bhakyalakshmi, S. (2016). Mental health status and perceived burden in caregiving spouses of persons with psychotic illness (A study from India). Social Work in Mental Health, 14(5), 530–544.

    Article  Google Scholar 

  • Sustrami, D., Yusuf, A., Fitryasari, R., Suhardiningsih, A. S., & Arifin, H. (2023). Determinants of Burden in Family Caregivers of Individuals With Schizophrenia: A Systematic Review. Journal of Psychosocial Nursing and Mental Health Services, 61(2), 38–43.

    Article  PubMed  Google Scholar 

  • Szeligowski, T., Yun, A. L., Lennox, B. R., & Burnet, P. W. (2020). The gut microbiome and schizophrenia: The current state of the field and clinical applications. Frontiers in Psychiatry, 11, 156.

    Article  PubMed  PubMed Central  Google Scholar 

  • Tamizi, Z., Fallahi-Khoshknab, M., Dalvandi, A., Mohammadi-Shahboulaghi, F., Mohammadi, E., & Bakhshi, E. (2020). Caregiving burden in family caregivers of patients with schizophrenia: A qualitative study. Journal of education and health promotion, 9.

  • Triana, L., & Sudjatmiko, I. G. (2021). The role of religious coping in caregiving stress. Religions, 12(6), 440.

    Article  Google Scholar 

  • Udoh, E. E., Omorere, D. E., Sunday, O., Osasu, O. S., & Amoo, B. A. (2021). Psychological distress and burden of care among family caregivers of patients with mental illness in a neuropsychiatric outpatient clinic in Nigeria. PLoS ONE, 16(5), e0250309.

    Article  PubMed  PubMed Central  Google Scholar 

  • Vella, S.-L., & Pai, N. (2013). The measurement of burden of care in serious mental illness: A qualitative review. Australian & New Zealand Journal of Psychiatry, 47(3), 222–234.

    Article  Google Scholar 

  • Yazici, E., Karabulut, Ü., Yildiz, M., Tekeş, S. B., Eda, İ, Çakir, U., Boşgelmez, Ş, & Turgut, C. (2016). Burden on caregivers of patients with schizophrenia and related factors. Nöro Psikiyatri Arşivi, 53(2), 96.

    Article  PubMed  PubMed Central  Google Scholar 

  • Zhou, J. S., Zhong, B. L., Xiang, Y. T., Chen, Q., Cao, X. L., Correll, C. U., Ungvari, G. S., Chiu, H. F., Lai, K. Y., & Wang, X. P. (2016). Prevalence of aggression in hospitalized patients with schizophrenia in C hina: A meta-analysis. Asia-Pacific Psychiatry, 8(1), 60–69.

    Article  PubMed  Google Scholar 

  • Zhou, Z., Wang, Y., Feng, P., Li, T., Tebes, J. K., Luan, R., & Yu, Y. (2021). Associations of caregiving knowledge and skills with caregiver burden, psychological well-being, and coping styles among primary family caregivers of people living with schizophrenia in China. Frontiers in Psychiatry, 12, 631420.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Clinical Psychology, School of Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran

    Ali Hosseinzadeh Oskouei

  2. Department of Counseling, Faculty of Psychology and Education, Kharazmi University, Tehran, Iran

    Mohammad Sadegh Zamani Zarchi

  3. Faculty of Human Science, Imam Khomeini University, Qazvin, Iran

    Nazanin Sadat Mousavi

  4. Behavioral Research Center, Imam Hossein Hospital, Shahid Beheshti University of Medical Sciences, Tehran, Iran

    Amir Maziar Niaei

  5. Behavioral Research Center, Department of Psychiatry, Imam Hossein Hospital, Shahid Beheshti University of Medical Sciences , Velenjak, 7th Floor, Bldg No.2 SBUMS, Arabi Ave., Tehran, Tehran Province, Iran

    Jamal Shams

Authors
  1. Ali Hosseinzadeh Oskouei
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Mohammad Sadegh Zamani Zarchi
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Nazanin Sadat Mousavi
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Amir Maziar Niaei
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Jamal Shams
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jamal Shams.

Ethics declarations

Conflict of interest

The authors report there are no competing interests to declare.

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.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Oskouei, A.H., Zarchi, M.S.Z., Mousavi, N.S. et al. Living with schizophrenia: a phenomenological study of the lived experience of caregivers of patients suffering from schizophrenia in Iran. Curr Psychol 43, 11616–11626 (2024). https://doi.org/10.1007/s12144-023-05196-7

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12144-023-05196-7

Keywords

Search

Navigation