Main Article Content
Although caregiving for persons with early schizophrenia is a difficult task, little is known about the caregiving process in early schizophrenia. This study explored the caregiving process for children with early schizophrenia. Twenty-five Thai parents of children diagnosed with schizophrenia within the last five years were interviewed indepth at outpatient clinics and wards of a large psychiatric hospital in Thailand. A Straussian grounded theory approach was used and data analysed using constant comparative analysis.
“Struggling to restore normalcy” emerged as the core category that comprised six sub-categories: learning the diagnosis, facing shattered dreams, caregiving as an unavoidable role, struggling to control psychotic symptoms, struggling to deal with the illness impacts, and accepting a new normal. The parents felt as if they were facing shattered dreams after learning the diagnosis. They viewed their caregiving as an unavoidable role, as they strived for their child’s normalcy. They tried to control their child’s unstable psychotic symptoms by maintaining medication adherence, monitoring and managing the symptoms, and preventing symptom exacerbation and relapse. They had to deal with the impacts of the illness including their child’s poor decision-making, illness-related stigma, and their feeling of loss and difficulties. They gradually accepted the incurability of schizophrenia which was their child’s new normal.
The unique study findings add to nursing’s knowledge about caregiving for this group of children, and have implications for the development of an intervention program that nurses and others can use to help parents cope with caregiving challenges. Future studies should compare mothers’ and fathers’ experiences in caring for children with early schizophrenia.
Copyright: The Pacific Rim International Journal of Nursing Research, Thailand Nursing & Midwifery Council has exclusive rights to publish, reproduce and distribute the manuscript and all contents therein.
2. Department of Mental Health. Rate of psychiatric patients: Annual report. [cited 2013, October 08]. Available from https://www.dmh.go.th/report/report1.asp.
3. Phanthunane P, Vos T, Whiteford H, Bertram M, Udomratn P. Schizophrenia in Thailand: Prevalence and burden of disease. Popul Health Metr. 2010;8(24):1-8.
4. Phanthunane P, Whiteford H , Vos T, Bertram M. Economic burden of schizophrenia: Empirical analyses from a survey in Thailand. J Ment Health Policy Econ. 2012;15(1):25-32.
5. Andreasen NC, Liu D, Ziebell S, Vora A, Ho BC. Relapse duration, treatment intensity, and brain tissue loss in schizophrenia: A prospective longitudinal MRI study. Am J Psychiatry. 2013;170:609-15.
6. Sariah AD, Outwater AH, Malima KIY. Risk and protective factors for relapse among individuals with schizophrenia: A qualitative study in Dar es Salaam, Tanzania. BMC Psychiatry. 2014;14:240-52.
7. Ascher-Svanum H, Zhu B, Fraies DE, Salkever D, Slade EP, Peng X, et al. The cost of relapse and the predictors of relapse in the treatment of schizophrenia. BMC Psychiatry. 2010;10(2):1-7.
8. Emsley R, Chiliza B, Asmal L, Harvey BH. The nature of relapse in schizophrenia. BMC Psychiatry. 2013;13:50-8.
9. Siegel SJ, Irani F, Brensinger CM, Kohler CG, Bilker WB, Ragland D, et al. Prognostic variables at intake and long-term level of function in schizophrenia. Am J Psychiatry. 2006; 163:433-41.
10. Tungpunkom P, Napa W, Srikhachin P, Chaniang S. Caregiving experiences of families living with patients with schizophrenia: A systematic review. 2013;11(8):415564. Available from https://www.joannabriggslibrary. org/ jbilibrary/index.php/jbisrir/index. Doi: 10.11124/ jbisrir-2013-881.
11. Caqueo-Urizar A, Miranda-Castillo C, Giráldez SL, Maturana SL, Pérez MR, Tapia FM. An updated review on burden on caregivers of schizophrenia patients. Psicothema. 2014;26(2): 235-43.
12. Mendenhall AM, Mount K. Parents of children with mental illness: Exploring the caregiver experience and caregiverfocused intervention. Fam Soc J Contemp H. 2011; 92(2):183-90.
13. Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, et al. Sometimes it’s difficult to have a normal life: Results from a qualitative study exploring caregiver burden in schizophrenia. Schizophr Res Treatment. [cited 2014, April 03]. Available from https://dx.doi.org/ 10.1155/2014/368215.
14. Negota AJ, Mashegoane S. Mothering children with schizophrenia in a village setting: A multiple case study. J Psychol Afr. 2012;22(2):259-62.
15. Mizuno E, Takataya K, Kamizawa N, Sakai I, Yamazaki Y. Female families’experiences of caring for persons with schizophrenia. Arch Psychiatr Nurs. 2013;27:72-7.
16. Muhlbauer SA. Navigating the storm of mental illness: Phases in the family’s journey. Qual Health Res. 2002;12:1076-92.
17. Mcauliffe R, O’Connor L, Meagher D. Parents’ experience of living with and caring for an adult son or daughter with schizophrenia at home in Ireland: A qualitative study. J Psychiatr Mental Health Nurs. 2014;21:145-53.
18. Rose L, Mallinson RK, Walton-Moss B. A grounded theory of families responding to mental illness. West J Nurs Res. 2002;24(5):516-36.
19. Wynaden D. The experience of caring for a person with a mental illness: A grounded theory study. Int J Ment Health Nurs. 2007;16:381-89.
20. Janardhana N, Raghunandan S, Naidu DM, Saraswathi L, Seshan V. Caregiver, cargiving experiences, caregiver load, people with severe mental illness. Indian J Psychol Med. 2015; 37(2):184-94.
21. Sanseeha L, Chontawan R, Sethabouppha H, Disayavanish C, Turale S. Illness perspectives of Thais diagnosed with schizophrenia. Nurs Health Sci. 2009;11:306-11.
22. Thampanichawat W. Maintaining love and hope: Caring for Thai children with HIV infection. J Assoc Nurses AIDS Care. 2008;19(3):200-10.
23. Rungreangkulkij S, Chesla C. Smooth a heart with water: Thai mothers care for a child with schizophrenia. Arch Psychiatr Nurs. 2001;15(3):120-27.
24. Subgranon R, Lund D. Maintaining caregiving at home: A culturally sensitive grounded theory of providing care in Thailand. J Transcult Nurs. 2000;11(3):166-73.
25. Dangdomyouth P, Stern PN, Oumtanee A, Yunibhand J. Tactful monitoring: How Thai caregivers manage their relatives with schizophrenia at home. Issues Ment Health Nurs. 2008;29:37-50.
26. Sukmak V, Chockratnhirun U, Srijunlah A. Strategies used by caregivers in managing psychiatric patients at home. J Psychiatr Assoc Thai. 2001;46(2):107-16. [in Thai].
27. Tunkpunkom P. Staying in balance: Skill and role development in psychiatric caregiving [dissertation]. USA: University of California at San Francisco; 2000.
28. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory. 3rd ed. Los Angeles: Sage; 2008.
29. Lincoln Y, Guba E. Establishing trustworthiness. In: Bryman A, Burgess RG, editors. Qualitative Research, Vol III. Thousand Oaks (CA): Sage; 1999.
30. Bloomberg LD, Volpe M. Completing your qualitative dissertation: A roadmap from beginning to end. Thousand Oaks (CA): Sage; 2008.
31. Bhikkhu B. Handbook for mankind: Realizing your full potential as a human being. Bangkok, Thailand: Amarin Publishing; 2007.
32. Patoomwan A. Living with childhood cancer in Thai families: Stories of struggling with uncertaincy [dissertation]. USA: University of California at San Francisco; 2001.
33. Weimand BM, Hall-Lord ML, Sallstrom C, Hedelin B. Life-sharing experiences of relatives of persons with severe mental illness: A phenomenographic study. Scand J Caring Sci. 2013;27:99-107.
34. Huang XY, Hung BJ, Sun FK, Lin JD, Chen CC. The experiences of carers in Taiwanese culture who have longterm schizophrenia in their families: A phenomenological study. J Psychiatr Mental Health Nurs. 2009;16:874-83.
35. Wongsawang N, Lagampan S, Lapvongwattana P, Bowers BJ. Family caregiving for dependent older adults in Thai families. J Nurs Scholarship. 2013;45(4):336-43.
36. Yen WJ, Teng CH, Huang XY, Ma WF, Lee S, Tseng HC. A theory of meaning of caregiving for parents of mentally ill children in Taiwan: A qualitative study. J Clin Nurs. 2010;19:259-65.
37. West C, Honey A. The involvement of fathers in supporting a young person living with mental Illness. J Child Fam Stud. [cited 2015, June 06]. Doi 10.1007/s10826015-0230-7.