Abstract
Although numerous studies have documented the caregiver burden of family members of patients with schizophrenia, the family continues to be on the periphery of the mental health system in India. This study aims to document a holistic perspective of caregiving experiences and uses the framework of life cycle stages to focus on how caregiving influences the developmental tasks of the family members’ life cycle stage. Through the content analysis of qualitative data of questionnaires administered with twenty-seven caregivers, the psychosocial vulnerabilities of the caregivers and their experiences of caregiving was explored. Results indicate that the caregivers experienced caregiving in a temporal fashion, and the themes emerged as past, present, and future experiences. The past focused on the changing roles of the patient and the caregiver while in the present, the emphasis was on the emotional, physical, and practical burdens of caregiving, which is heavily influenced by the socio-cultural factors such as available support. Schizophrenia was seen by caregivers as an illness that disrupted the family life, and the individual life cycle stage of the person. The study highlights the need to move the therapeutic lens to the family as ‘a unit of care’, thereby focusing on the felt needs of the caregiver as well as the individual with schizophrenia.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Data Availability
Not applicable.
Code Availability
Not applicable.
References
Adler, D. A., Pajer, K., Ellison, J. M., Dorwart, R., Siris, S., Goldman, H., Lehman, A., & Berlant, J. (1995). Schizophrenia and the life cycle. Community Mental Health Journal, 31(3), 249–262. https://doi.org/10.1007/BF02188751
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. https://doi.org/10.4103/IJPSYM.IJPSYM_204_17
Avasthi, A. (2010). Preserve and strengthen family to promote mental health. Indian Journal of Psychiatry, 52(2), 113–126. https://doi.org/10.4103/0019-5545.64582
Berman, E., & Heru, A. (2014). Psychiatric Illness and the Life Cycle. In M. McGoldrick, B. Carter, & N. Garcia-Preto (Eds.), The Expanded Family Life Cycle Individual, Family, Social Perspectives (Fourth Edition, pp. 391–406). Pearson Education Limited.
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
Chakrabarti, S. (2013). Cultural aspects of caregiver burden in psychiatric disorders. World Journal of Psychiatry, 3(4), 85. https://doi.org/10.5498/wjp.v3.i4.85
Chakrabarti, S. (2016). Research on family caregiving for mental illness in India and its impact on clinical practice: Are we doing enough to help families? Indian Journal of Social Psychiatry, 32(1), 19. https://doi.org/10.4103/0971-9962.176762
Chakrabarti, S. (2010). Impact of schizophrenia on caregivers: The Indian perspective. In P. Kulhara, A. Avasthi, & S. Grover (Eds.), Schizophrenia: The Indian Scene (pp. 215–262). PGIMER (Psyrom). https://play.google.com/store/books/details?id=9nu0NAAACAAJ
Charlson, F. J., Ferrari, A. J., Santomauro, D. F., Diminic, S., Stockings, E., Scott, J. G., McGrath, J. J., & Whiteford, H. A. (2018). Global Epidemiology and Burden of Schizophrenia: Findings From the Global Burden of Disease Study 2016. Schizophrenia Bulletin, 44(6), 1195–1203. https://doi.org/10.1093/schbul/sby058
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), 75. https://doi.org/10.1186/s12888-019-2052-4
Creswell, J. W. (2014). A Concise Introduction to Mixed Methods Research. SAGE Publications. https://play.google.com/store/books/details?id=51UXBAAAQBAJ
Do, E. K., Cohen, S. A., & Brown, M. J. (2014). Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation. BMC Public Health, 14, 362. https://doi.org/10.1186/1471-2458-14-362
Duvall, E. M. (1957). Family development (Vol. 533). J. P. Lippincott.
Falloon, I. R. (2005). Research on family interventions for mental disorders: problems and perspectives. In N. Sartorius, J. Leff, J. J. Lopez-Ibor, M. Maj, & A. Okasha (Eds.), Families and Mental Disorders: From Burden to Empowerment (pp. 235–257). John Wiley & Sons. https://play.google.com/store/books/details?id=wpknr8BYCzsC
Harding, C. M., Zubin, J., & Strauss, J. S. (1992). Chronicity in schizophrenia: revisited. The British Journal of Psychiatry. Supplement, 18, 27–37. https://www.ncbi.nlm.nih.gov/pubmed/1389039
Holm, T., Pillemer, D. B., Bliksted, V., & Thomsen, D. K. (2017). A decline in self-defining memories following a diagnosis of schizophrenia. Comprehensive Psychiatry, 76, 18–25. https://doi.org/10.1016/j.comppsych.2017.03.014
Hsiao, C.-Y., & Tsai, Y.-F. (2014). Caregiver burden and satisfaction in families of individuals with schizophrenia. Nursing Research, 63(4), 260–269. https://doi.org/10.1097/NNR.0000000000000047
Jagannathan, A., Thirthalli, J., Hamza, A., Hariprasad, V. R., Nagendra, H. R., & Gangadhar, B. N. (2011). A qualitative study on the needs of caregivers of inpatients with schizophrenia in India. The International Journal of Social Psychiatry, 57(2), 180–194. https://doi.org/10.1177/0020764009347334
Jungbauer, J., Wittmund, B., Dietrich, S., & Angermeyer, M. C. (2004). The disregarded caregivers: subjective burden in spouses of schizophrenia patients. Schizophrenia Bulletin, 30(3), 665–675. https://doi.org/10.1093/oxfordjournals.schbul.a007114
Kaushik, V., & Walsh, C. A. (2019). Pragmatism as a Research Paradigm and Its Implications for Social Work Research. Social Sciences, 8(9), 255. https://doi.org/10.3390/socsci8090255
Khan, A. Y., Kalia, R., Ide, G. D., & Ghavami, M. (2017). Residual symptoms of schizophrenia: What are realistic treatment goals? Current Psychiatry, 16(3), 34–40. https://www.mdedge.com/psychiatry/article/132352/schizophrenia-other-psychotic-disorders/residual-symptoms-schizophrenia?sso=true
Kristjanson, L. J., & Aoun, S. (2004). Palliative care for families: remembering the hidden patients. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 49(6), 359–365. https://doi.org/10.1177/070674370404900604
Labrum, T. (2020). Persons with serious mental illness help relatives: rates and correlates of assistance. Journal of Mental Health, 29(3), 328–335. https://doi.org/10.1080/09638237.2020.1739246
May, S. (2018, July 30). The National Alliance for Caregiving. The National Alliance for Caregiving; The National Alliance for Caregiving. https://www.caregiving.org/
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
Miller, D. A. (1981). The “sandwich” generation: adult children of the aging. The Social Worker, 26(5), 419–423. https://doi.org/10.1093/sw/26.5.419
Milliken, P. J., & Northcott, H. C. (2003). Redefining parental identity: caregiving and schizophrenia. Qualitative Health Research, 13(1), 100–113. https://doi.org/10.1177/1049732302239413
Ong, H. C., Ibrahim, N., & Wahab, S. (2016). Psychological distress, perceived stigma, and coping among caregivers of patients with schizophrenia. Psychology Research and Behavior Management, 9, 211–218. https://doi.org/10.2147/PRBM.S112129
Patel, K. R., Cherian, J., Gohil, K., & Atkinson, D. (2014). Schizophrenia: overview and treatment options. P & T: A Peer-Reviewed Journal for Formulary Management, 39(9), 638–645. https://www.ncbi.nlm.nih.gov/pubmed/25210417
Petros, R., Solomon, P., Linz, S., DeCesaris, M., & Hanrahan, N. P. (2016). Autovideography: The Lived Experience of Recovery for Adults with Serious Mental Illness. The Psychiatric Quarterly, 87(3), 417–426. https://doi.org/10.1007/s11126-015-9397-8
Rolland, J. S. (1987). Chronic illness and the life cycle: a conceptual framework. Family Process, 26(2), 203–221. https://doi.org/10.1111/j.1545-5300.1987.00203.x
Rolland, J. S. (2014). Chronic Illness and the Life Cycle. In M. McGoldrick, B. Carter, & N. Garcia-Preto (Eds.), Expanded Family Life Cycle, The: Individual, Family, and Social Perspectives (pp. 335–356). Pearson Education Limited.
Rolland, J. S. (2019a). The family, chronic illness, and disability: An integrated practice model. In B. H. Fiese (Ed.), APA handbook of contemporary family psychology: Applications and broad impact of family psychology, Vol (Vol. 2, pp. 85–102). American Psychological Association, https://doi.org/10.1037/0000100-006
Rolland, J. S. (2019b). Families, health, and illness. In Handbook of Health Social Work (pp. 331–357). Wiley. https://doi.org/10.1002/9781119420743.ch15
Shankar, R., & Rao, K. (2005). From burden to empowerment: The journey of family caregivers in India. In N. Sartorius, J. Leff, J. Lopez-Ibor, & A. Okasha (Eds.), Families and Mental Disorders (pp. 259–290). John Wiley & Sons, Ltd.
Sinha, D., Singh, S., & Raut, N. (2019). Caregiving experience and marital adjustment in spouses of patients with schizophrenia. Indian Journal of Social Psychiatry, 35(2), 125. https://doi.org/10.4103/ijsp.ijsp_49_18
Skaff, M. M., & Pearlin, L. I. (1992). Caregiving: role engulfment and the loss of self. The Gerontologist, 32(5), 656–664. https://doi.org/10.1093/geront/32.5.656
Stålberg, G., Ekerwald, H., & Hultman, C. M. (2004). At issue: siblings of patients with schizophrenia: sibling bond, coping patterns, and fear of possible schizophrenia heredity. Schizophrenia Bulletin, 30(2), 445–458. https://doi.org/10.1093/oxfordjournals.schbul.a007091
Stromwall, L. K., & Robinson, E. A. (1998). When a family member has a schizophrenic disorder: practice issues across the family life cycle. The American Journal of Orthopsychiatry, 68(4), 580–589. https://doi.org/10.1037/h0080366
Carter, B., & McGoldrick, M. (Eds.). (1988). The changing family life cycle: A framework for family therapy, 2nd ed. 2, 593. https://psycnet.apa.org/fulltext/1988-97996-000.pdf
World Health Organization. (2013). Mental health action plan 2013–2030. World Health Organization. https://play.google.com/store/books/details?id=IXhyEAAAQBAJ
Yang, C.-I., Hsieh, M.-Y., Lee, L.-H., & Chen, S.-L. (2017). Experiences of caring for a sibling with schizophrenia in a Chinese context: A neglected issue. International Journal of Mental Health Nursing, 26(4), 409–417. https://doi.org/10.1111/inm.12269
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
Young, L., Murata, L., McPherson, C., Jacob, J. D., & Vandyk, A. D. (2019). Exploring the Experiences of Parent Caregivers of Adult Children With Schizophrenia: A Systematic Review. Archives of Psychiatric Nursing, 33(1), 93–103. https://doi.org/10.1016/j.apnu.2018.08.005
Funding
The author declares that no funds, grants, or other support were received during the preparation of this manuscript.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors have no relevant 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
Meheli, S. Experiences of Family Caregivers of Patients with Schizophrenia: A Qualitative Study in India. J. Psychosoc. Rehabil. Ment. Health (2023). https://doi.org/10.1007/s40737-023-00355-2
Received:
Accepted:
Published:
DOI: https://doi.org/10.1007/s40737-023-00355-2