Objective: To assess the impact of social support on family caregivers of schizophrenia patients.
Method: The cross-sectional, observational study was conducted at Menur Mental Health Hospital, Surabaya, Indonesia, from June to July 2021, and comprised family caregivers aged 20-60 years who lived with schizophrenia patients. Data was collected using the Indonesia version of Zarit Burden Interview and the social support questionnaire. Data was analysed using SPSS 25.
Results: Of the 160 subjects, 87(54.4%) were males and 73(45.6%) were females, and 88(55%) were adults, while 36(22.5%) had duration of care >10 years. All the 160(100%) patients had been receiving regular treatment. There were 64(40%) respondents who reported having good social support. The correlation between social support and the family caregiver burden related to schizophrenia patients was significant (p< 0.05).
Conclusion: There was a significant relationship between social support and burden on family caregivers of schizophrenia patients.
Keywords: Caregiver, Schizophrenia, Burden, Psychiatric, Ambulatory care. (JPMA 73: S-42 [Suppl. 2]; 2023)
Schizophrenia affects around 20 million people worldwide.1 In Indonesia, 13% of the diseases are mental health disorders and this figure will increase to 25% by 2030. Basic Health Research in Indonesia (RISKESDAS) showed that there were 6% people with schizophrenia in East Java.2 Furthermore, in Surabaya, data from Menur Mental Health Hospital (MMHH) in 2020 showed that there were 9,994 outpatients with schizophrenia.3 These numbers indicate a large number of family caregivers also for schizophrenia patients.
Patients with schizophrenia have functional disabilities,4 and need support, especially from their families.4,5 However, family caregivers often experience a psychological and physical burden in caring for such patients. They experience a feeling of boredom, fatigue and a decrease in quality of life.6,7
Family caregivers have many stressors when caring for patients with schizophrenia.8 They have to spend most of their time taking care of the patients to obtain health outcomes. Caregivers also experience social stigma,9,10 which causes shame and social withdrawal among them. In addition, the high cost of care and changes in the roles and responsibilities of the family caregivers cause uncertainty in life.9
Social support is needed to maintain the psychological wellbeing and to share the burden of family caregivers.6,11 Previous studies regarding social support have show heterogeneity.12 The current study was planned to assess the relationship between social support and the burden of family caregivers of schizophrenia patients.
Subjects and Methods
The cross-sectional, observational study was conducted at MMHH, Surabaya, Indonesia, from June to July 2021. After approval from the institutional ethics review board, the sample was raised using random sampling technique. Those included were family caregivers from among those who visited the MMHH outpatient clinic, were aged 20-60 years, and lived with the patients. Informed consent was obtained from all the subjects, and those who did not want to participate were excluded.
After the researcher was screened by polymerase chain rection (PCR) test for coronavirus disease-2019 (COVID-19), data was collected using a self-reporting questionnaire with all the relevant permissions in hand.13,14 The questionnaires were distributed among the subjects, and those who wanted to withdraw after going through the questionnaires were allowed to do so.
The Family caregiver burden was assessed using the Indonesian version of Zarit Burden Interview (ZBI).15 The questionnaire has 22 items under 4 domains; emotional component (15 items), physical health (2 items), social burden (3 items), and financial burden (2 items). The tool is scored on a Likert scale, with 0=never and 4=always. Score 0-21 indicates no burden, 21-40 mild-moderate burden, 41-60 moderate to severe burden, and 61-88 a very severe burden. Cronbach’s alpha of the questionnaire was 0.931.14
The questionnaire used to assess social support had four domains; appraisal support, informational support, instrumental support and emotional support. The 10-item instrument is scored using a Likert scale, with 0=never and 4=always. Total score 36.8 indicates good social support, 25.4-36.8 moderate social support, and ≤25.4 low social support. The questionnaire had internal consistency, with Cronbach’s alpha value 0.951.13
Data was analysed using SPSS 25. Descriptive statistics were used to express frequencies and percentages of each variable. Spearman rho was applied to determine the relationship between two variables. P<0.05 indicated statistical significance.
Of the 160 subjects, 87(54.4%) were males and 73(45.6%) were females, and 88(55%) were adults, while 36(22.5%) had duration of care >10 years. All the 160(100%) patients had been receiving regular treatment (Table 1).
Overall, 64(40%) respondents reported having no burden, 84(52.5%) had mild-moderate burden, 11(6.9%) had moderate to severe burden and 1(0.6%) respondent had severe burden (Table 2).
The correlation between social support and the family caregiver burden related to schizophrenia patients was significant (p< 0.05) (Table 3).
The family caregivers of schizophrenia patients were found to have good social support, and, as such, reported low burden. The finding supported previous studies in this regard.16,17
The patients need full assistance from their families which can cause burden to the caregivers,18 like suffering emotionally, physically, socially and financially.19 There are two types of burdens experienced by families; objective and subjective burdens. Objective burdens are related to social problems, activity problems, financial difficulties and negative impacts on the physical health. Subjective burden is associated with a psychological response, such as sadness, anxiety, fatigue and less self-efficacy.11 These feelings are also felt by family caregivers when caring for their family with schizophrenia.20
Social support refers to the presence of comfort, attention, appreciation or availability of help from others.11,21 Social support usually can be classified into appraisal support, informational support, instrumental support and emotional support.22 There are several factors that influence social support, such as receiver, provider and structural social networks.23 This needs motivation of other family members and healthcare providers as a social network to support the family caregivers.
Social support from the community and other family members is required to overcome the problems experienced by the family caregiver.11,24 In addition, social support diminishes negative feelings when caring for schizophrenia patients.25 These negative feelings are the results of problems that arise in the caring process for the family caregivers of schizophrenia patients. Increasing social support has an effect on caregiver’s health and patient’s health outcome.16
The current study has limitations, like it did not measure the actual task of family caregiving, and did not calculate the sample size either. Further studies are needed to go beyond these limitations.
There was a relationship between social support and the burden on family caregivers of schizophrenia patients. Support from other family members, nurses as well as the community at large may help reduce the burden of the individual family caregiver.
Acknowledgment: We are grateful to the administration of Menur Mental Health Hospital, Surabaya, Indonesia, and to all the study subjects.
Disclaimer: The text was presented at the 13th International Nursing Conference, 2022, held at Universitas Airlangga.
Conflict of Interest: None.
Source of Funding: The Ministry of Research and Technology / National Research and Innovation Agency.
1. Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 354 diseases and injuries for 195 countries and territories, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet 2018;392:1789-858. doi: 10.1016/S0140-6736(18)32279-7.
2. Health Research and Development Agency, Ministry of Health, Republic of Indonesia. Report on the results of basic health research (Riskesdas) in Indonesia in 2018. Jakarta, Indonesia: Health Research and Development Agency, Ministry of Health, Republic of Indonesia, 2018; pp 5-10.
3. Menur Psychiatric Hospital. Practicum Module: Information Systems Management Hospital. In: The Role of the Hospital Management Information System (SIMRS). East Java, Indonesia: Menur Psychiatric Hospital; 2021.
4. Harvey PD, Strassnig MT. Cognition and disability in schizophrenia: cognition-related skills deficits and decision-making challenges add to morbidity. World Psychiatry 2019;18:165-7. doi: 10.1002/wps.20647.
5. Pardede JA, Purba JM. Family Support Related to Quality of Life on Schizophrenia Patients. Jurnal Ilmiah Permas: Jurnal Ilmiah STIKES Kendal 2020;10:645-54. DOI: 10.32583/pskm.v10i4.942
6. Chen L, Zhao Y, Tang J, Jin G, Liu Y, Zhao X, et al. The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: a qualitative study. BMC Psychiatry 2019;19:75. doi: 10.1186/s12888-019-2052-4.
7. Kamil SH, Velligan DI. Caregivers of individuals with schizophrenia: who are they and what are their challenges? Curr Opin Psychiatry 2019;32:157-63. doi: 10.1097/YCO.0000000000000492.
8. Aubeeluck ND, Luximon-Ramma A. The burdens of family caregivers of schizophrenia in Mauritius. SciMed j 2020;2:118-31. DOI: 10.28991/SciMedJ-2020-0203-2.
9. Krupchanka D, Chrtková D, Vítková M, Munzel D, Čihařová M, Růžičková T, et al. Experience of stigma and discrimination in families of persons with schizophrenia in the Czech Republic. Soc Sci Med 2018;212:129-35. doi: 10.1016/j.socscimed.2018.07.015.
10. Guan Z, Huang C, Wiley JA, Sun M, Bai X, Tang S. Internalized stigma and its correlates among family caregivers of patients diagnosed with schizophrenia in Changsha, Hunan, China. J Psychiatr Ment Health Nurs 2020;27:224-36. doi: 10.1111/jpm.12571.
11. Del-Pino-Casado R, Frías-Osuna A, Palomino-Moral PA, Ruzafa-Martínez M, Ramos-Morcillo AJ. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One 2018;13:e0189874. doi: 10.1371/journal.pone.0189874.
12. Smerglia VL, Miller NB, Sotnak DL, Geiss CA. Social support and adjustment to caring for elder family members: A multi-study analysis. Aging Ment Health 2007;11:205-17. doi: 10.1080/ 13607860600844515.
13. Fitryasari R, Nursalam N, Yusuf A, Hargono R, Lin EC, Tristiana RD. Development of a family resiliency model to care of patients with schizophrenia. Scand J Caring Sci 2021;35:642-9. doi: 10.1111/ scs.12886.
14. Tristiana RD, Triantoro B, Nihayati HE, Yusuf AH, Abdullah KL. Relationship between caregivers’ burden of schizophrenia patient with their quality of life in Indonesia. J. Psychosoc. Rehabil. Ment. Health 2019;6:141-8. DOI 10.1007/s40737-019-00144-w.
15. Zarit SH, Orr NK, Zarit JM. The hidden victims of Alzheimer’s disease: Families under stress. New York, USA: New York University press; 1985.
16. Leung DYP, Chan HYL, Chiu PKC, Lo RSK, Lee LLY. Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers. Int J Environ Res Public Health 2020;17:5457. doi: 10.3390/ijerph17155457.
17. Tao X, Chow SKY, Zhang H, Huang J, Gu A, Jin Y, et al. Family caregiver’s burden and the social support for older patients undergoing peritoneal dialysis. J Ren Care 2020;46:222-32. doi: 10.1111/jorc.12322.
18. Hoang VL, Green T, Bonner A. Informal caregivers’ experiences of caring for people receiving dialysis: A mixed-methods systematic review. J Ren Care 2018;44:82-95. doi: 10.1111/jorc.12235.
19. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980;20:649-55. doi: 10.1093/geront/20.6.649
20. Wan KF, Wong MMC. Stress and burden faced by family caregivers of people with schizophrenia and early psychosis in Hong Kong. Intern Med J 2019;49(Suppl 1):9-15. doi: 10.1111/imj.14166.
21. Sarason IG, Levine HM, Basham RB, Sarason BR. Assessing social support: The Social Support Questionnaire. J Pers Soc Psychol 1983;44:127–39. doi: 10.1037/0022-35220.127.116.11.
22. Chang BL, Brecht ML, Carter PA. Predictors of social support and caregiver outcomes. Women Health 2001;33:39-61. doi: 10.1300/J013v33n01_04
23. Gottlieb BH, Bergen AE. Social support concepts and measures. J Psychosom Res 2010;69:511-20. doi: 10.1016/j.jpsychores.2009. 10.001.
24. Pérez JJN, Marqués ÁC. Family burden, social support and community health in caregivers of people with serious mental disorder. Rev Esc Enferm USP 2018;52:e03351. doi: 10.1590/S1980- 220X2017029403351.
25. Cohen S. Social relationships and health. Am Psychol 2004;59:676- 84. doi: 10.1037/0003-066X.59.8.676.