|Year : 2016 | Volume
| Issue : 1 | Page : 42-49
Subjective burden, psychological distress, and perceived social support among caregivers of persons with schizophrenia
Elangovan Aravind Raj1, Sahana Shiri2, Kavita V Jangam1
1 Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
2 Department of Psychiatry, Kasturba Medical College, Manipal, Udupi, Karnataka, India
|Date of Web Publication||17-Feb-2016|
Dr. Elangovan Aravind Raj
Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru - 560 029, Karnataka
Source of Support: None, Conflict of Interest: None
Background/Objectives: Caregivers of persons with schizophrenia experience more stress due to the nature of the symptoms as well as the prolonged duration of illness. The current study is an attempt to understand the subjective components of burden, distress, and social support in caregivers of patients with schizophrenia in Indian context and its linkage with their sociodemographic profile and patient's illness profile. Methodology: Thirty-two caregivers of patients with schizophrenia from a psychiatric inpatient facility of a multidisciplinary hospital were studied using descriptive research design. Results: The result shows that negative symptoms of patients, subdomains of burden (burden on well-being, marital burden, burden on relations, and burden due to perceived severity) were the predictors of subjective burden. Burden on well-being and respondent's age were predictors of psychological distress. Conclusion: Inclusive treatment services would enhance the quality of life of the caregivers and would help them in ensuring long-term care for the patients with schizophrenia.
Keywords: Caregivers, perceived social support, psychological distress, schizophrenia, subjective burden
|How to cite this article:|
Raj EA, Shiri S, Jangam KV. Subjective burden, psychological distress, and perceived social support among caregivers of persons with schizophrenia. Indian J Soc Psychiatry 2016;32:42-9
|How to cite this URL:|
Raj EA, Shiri S, Jangam KV. Subjective burden, psychological distress, and perceived social support among caregivers of persons with schizophrenia. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Dec 9];32:42-9. Available from: http://www.indjsp.org/text.asp?2016/32/1/42/176767
| Introduction|| |
Caregivers play an important role in supporting the family members who are suffering from mental illness. Besides pharmacological treatment for persons with mental illness, the quality of care given by the caregivers in the family is directly related to the functioning of the patients. On the other hand, the impact of caregiving on caregivers is also a significant area to be studied which will directly affect the quality of care given by them to patients. The caregivers' responsibility in providing care for people with mental disorders has increased in the past three decades mainly due to a trend toward community care and the de-institutionalization of psychiatric symptoms.  Caregivers of persons with schizophrenia experience more stress due to the nature of the symptoms as well as the prolonged duration of illness. The average prevalence of schizophrenia is 2-3/1000. The average incidence is 4.2/10,000 and 3/10,000 in the rural and urban areas, respectively.  The prevalence rate of schizophrenia explains the magnitude of the problem as well as the magnitude of the issues involved in the process of caregiving.
Due to the changing conditions and needs of the patients, caring for a family member with mental health problem is not a static process. The impact of care giving can be more demanding if the mental disorder is associated with behavioral problems or decreased functionality. The caregivers' burden increases with more patient contact and when patients live with their families. 
Subjective burden describes the psychological reactions which caregivers experience e.g., a feeling of loss, sadness, anxiety, and embarrassment in social situations, the stress of coping with disturbing behaviors, and the frustration caused by changing relationships.  While caregiver's burden due to a family members' mental illness has been increasingly documented, it has remained rather unclear how burden develops overtime and what are the most relevant predictors of the course of burden. Only a few longitudinal studies are available, and results are inconsistent. For instance, burden was found to be lower at 6-month follow-up in relatives of patients with predominantly positive symptoms when compared to that of relatives of patients with predominantly negative symptoms which was stable during the follow-up.
Psychological distress of caregivers
The emotional impact on family members due to caregiving is yet another area that alters the quality of caregiving. This is expressed in the form of psychological distress that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being.  Psychological distress is widely used as an indicator of the mental health of the population in public health, in population surveys and in epidemiological studies and as an outcome, in clinical trials and intervention studies. Yet the concept of psychological distress is still vague for some. Indeed, a closer look at the scientific literature shows that the expression "psychological distress" is often applied to the undifferentiated combinations of symptoms ranging from depression and general anxiety symptoms to personality traits, functional disabilities, and behavioral problems. Psychological distress is largely defined as a state of emotional suffering characterized by symptoms of depression (e.g., lost interest; sadness; and hopelessness) and anxiety (e.g., restlessness; feeling tense).  These symptoms may be tied in with somatic symptoms (e.g., insomnia; headaches; and lack of energy) that are likely to vary across cultures. ,
Social support and caregiving
Perceived social support refers to the perception that the person is cared for, is valued, and is part of a group. The exchange of supportive behaviors is not sufficient in itself to improve the recipient's emotional well-being. He or she has to feel supported. Thus, the actual support received cannot be objectively observed and counted; rather the recipient has to be asked how it was perceived.
The psychological distress and burden among primary caregivers of schizophrenia can be altered with the perceived social support from other family members, friends, and other significant persons in caregivers' life. Social support has been shown to serve as a buffer against the negative effects that are associated with family caregiving. , A number of studies have examined the role of social support on caregiving burden. ,
In the past, the studies on caregivers of persons with schizophrenia has focused on distress and burden as individual variables as well as combining these variables with the other variables like social support and network. Also, these variables are studied in the background of patient's illness profile and the caregiver's sociodemographic profile. In Indian context, the evidences are very scanty in terms of understanding the relationship between these variables. The subjective component of these variables is also less focused both in Western and Indian studies. Thus, the current study is an attempt to understand the subjective components of burden, distress, and social support in caregivers of patients with schizophrenia in Indian context.
Review of literature
Saunders  in his review related to families living with schizophrenia found that there is general agreement in the literature that a multitude of variables affect families with a severe mental illness (SMI), such as schizophrenia. Among those various factors, the most frequently investigated variables were coping, psychological distress and caregiver burden, social support, caregiver resiliency and depression, and client behavioral problems. Shibre et al. found that relatives of female patients suffered significantly higher social burden. Work and financial burdens affected female relatives more often than males.
Chien et al.  conducted a study to examine the perceived burden where the results indicated that the families who perceived a higher level of caregiver burden were those living in a family with poorer functioning, poor health status, and minimal social support. The caregiver's burden score was positively correlated with their monthly household income and number of family members living with patient. Social support was the best predictor of caregiver burden.
Not all networks provide support and recently it had been hypothesized that not all aspects of support are health promoting. Cechnicki and Wojciechowska  found that compound system of social support and a large social network with a high level of support correlate in a beneficial way with higher subjective satisfaction with the treatment. People with a large network, including the extra-familial network, who receive a high level of social support, function better in society, do not become regressive in their professional lives, and there are fewer burdens in their family life. A high level of social support correlates with better family functioning. Families of people with schizophrenia who have a large extra-familial network with a high level of support experience less deterioration and disintegration, less criticism, and rejection.
Systematic review by Bademli and Duman  to analyze the family to family support program provided for the families of the schizophrenia patients and their potential impact on caregiver shows that the caregivers who participated in the family to family support programs reported a significant decrease in their burden and increase in social support and family function. Moreover, it was noted that there was an increase in life satisfaction and a decrease in the need for education of the caregivers who participated in the programs. All studies included in this review agreed that family to family support programs for the caregivers of schizophrenia patients had positive outcomes. In addition, these studies suggested that systematic, planned, and sustainable educational programs can be developed for the caregivers of schizophrenic patients in order to help the caregivers cope with the challenges they encounter during the treatment procedures.
Möller-Leimkühler and Wiesheu  found that interaction of carers' expressed emotion and external locus of control with the patient's problem with family communication as well as perceived social support was most predictive for objective and subjective burden. Results of the study conducted by Tan et al.  demonstrated a high burden on caregivers because of many factors such as other commitments, lack of resources, insufficient financial support, education level, and aging. This study found that long-term caregivers suffer more than short-term ones.
Literature in the Indian context
Perceived burden and coping strategies in parents and spouses of person with schizophrenia were evaluated by Rammohan et al.  Spouse reported greater emotional burden. Parents used more of denial as a coping strategy. Caregiver's use of denial as a coping strategy emerged as a significant predictor of caregiver burden.
Rammohan et al.  found that the experience of burden among the caregivers of patients with schizophrenia was highest in the areas of burden due to patient's behavior or symptoms, caregiver's health, and social relationships. Parents and spouses differed on perceptions of burden. Parents of persons with schizophrenia experienced greater than spouses particularly in the areas of patients symptoms, finance, occupation, and burden. Patient's personality traits and caregiver's personality traits had an impact on the degree of burden experienced. Male patients and those with low levels of education caused a greater burden to the caregivers. Female caregivers experienced greater burden than males, particular in the areas of family relations, occupational burden, and caregiver health. Older caregivers, lower education level from lower income groups, and providers of care for a long duration of time experienced greater burden.
Chadda et al.  conducted a study on caregiver burden and coping in schizophrenia and bipolar effective disorder. One hundred patients each of schizophrenia and bipolar affective disorder (BPAD) attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline of 6 months using the burden assessment schedule (BAS) and ways of coping checklist. Burden remained stable over 6 months and was comparable in the two groups. Caregivers from both the groups were found to be using problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden. Caregivers of patient of schizophrenia and BPAD face similar level of burden and use similar types of coping methods to deal with it relationship between caregiver burden and coping is quit complex.
Parabiaghi et al.  conducted a study on predictors of caregiver burden in which they included both caregivers and patients characteristics and patterns of carer-patient interaction. Results revealed higher patient psychopathology, higher numbers of patient-rated needs, patient lower global functioning, and patient poorer quality of life were found to be related to the severity of family burden.
Sreeja et al. conducted a cross-sectional study to assess burden between family caregivers of the patient having schizophrenia and epilepsy. Data were collected from 60 patients. Findings revealed that the caregivers of both long-term neurological illness such as intractable epilepsy and mental illness such as schizophrenia experience high level of burden in the areas of patient care, finance, physical and emotional burden, family relations, and occupation. No significant difference was found in both groups of caregivers and also no significant difference was found in the total burden score between male and female caregivers of both the groups the study highlights the need for family interventional programs in follow-up clinics to address the specific concerns related to burden of caregivers. The above review of the literature justifies the point discussed in the introduction about that the studies on caregivers of persons with schizophrenia has focused on distress and burden as individual variables as well as combining these variables with the other variables such as social support and network.
| Methodology|| |
The aim of this study was to understand the relationship among subjective burden, psychological distress, and perceived social support of the primary caregivers of persons with schizophrenia.
Research design and sample
The current study adopted descriptive research design. The inpatient facility of the Department of Psychiatry, Kasturba Medical College, Manipal, was the universe of the current study. The population of the study included the primary caregivers of the persons diagnosed with schizophrenia who were admitted in the inpatient facility of the department. The person in the patients' family who is mainly involved in providing care for most of the time during the illness and treatment period was considered as the caregiver in the current study. The data collection was planned for a period of 4 months. The sample for the study included the total enumeration of the caregivers whose patients were admitted in the facility during the above-mentioned period. During this period, 32 patients with schizophrenia were admitted. Hence, 32 caregivers of patients with schizophrenia in the inpatient facility constituted the sample for the study.
- Sociodemographic sheet of the caregivers and the patients prepared by the researcher to profile the sociodemographic data of the caregivers and the patients
- Positive and Negative Symptoms Scale (PANSS)  to assess the severity of the illness of the patients
- Indian Disability Evaluation and Assessment Scale  to assess the functional level of the patients
- BAS,  which consists of five subdomains (impact on well-being, marital life, caring, relationships, and perceived severity) to measure the subjective burden of the respondents
- Self-reporting Questionnaire  to understand the psychological distress of the respondents
- Multidimensional scale of perceived social support  (three dimension: Perceived social-support from family, friends, and others) to assess the perceived social support of the respondents were used for the current study.
The study proposal was presented to the Institute Ethics Committee. After the ethical clearance, tools were translated into local language. As all the tools were used widely in the Indian setting in the context of patients with schizophrenia and their caregivers, the face validation of the sociodemographic sheet alone was carried out. In the pretesting, all the items were found to be relevant for the study. Informed consent was obtained from the respondents. The data were analyzed using the Statistical Package for Social Sciences SPSS version 11.0 (SPSS, Inc., Chicago IL).
| Results|| |
Sociodemographic profile of caregivers
Among the respondents, 62.5% were females and 71.9% of the caregivers were married. The mean age of the caregiver was 51.21 ± 13 years. The mean years of education of the caregiver were 9.21 ± 4 years and mean monthly income of the caregiver was INR 8062.25 ± 4087.25. Majority of the respondents (87.5%) were living in nuclear family. 50.0% of the respondents lived in urban area. The health status of the family members of the respondents showed that 15.6% of the respondents' family had physical illness and there was a history of mental illness in 34.4% of the families [Table 1].
Sociodemographic profile of patients
The majority (71.9%) of the patients were male. Among the patients, 65.6% were unmarried. Four of the patients were divorcee which constituted to 12.5% of the sample. The mean age of the patients was 35.28 ± 11.29 years. The mean year of education of the patient was 11.28 ± 3.61 years.
Illness profile of the patients
Most of the respondents (74.1%) were diagnosed with paranoid schizophrenia and 21.9% of the patients were diagnosed with undifferentiated schizophrenia. The mean duration of illness of the patients was 12.40 ± 9.46 years, mean percentage of disability of the patient was 62.34 ± 11.84. The mean PANSS-positive, negative, and general scores were 14.93 ± 6.03, 18.34 ± 8.75, and 31.56 ± 12.37, respectively.
The mean score of perceived social support by family was 19.65 ± 3, mean score of perceived social support by friends was 17.31 ± 6, mean score of perceived social support by others was 18.56 ± 5, and the mean score of the total perceived social support was 55.53 ± 12. The mean score of psychological distress was 6.18 ± 3, with a minimum score of 0 and the maximum score of 18. The mean score of BAS well-being was 7.46 ± 2, BAS marital was 4.87 ± 3, BAS caring was 8.31 ± 1, BAS relations were 7.68 ± 1, and BAS perceived severity was 7.50 ± 1. The mean of the total score of burden was 7.70 ± 1.
Sociodemographic variables and outcome variables
The results showed that there was a significant difference (t = −2.13, df = 30, P < 0.05) in the social support from others between caregivers of male and female patients. The caregivers of male patients have more social support from others than those of female patients. There was a significant difference (t = 2.30, df = 30, P < 0.0.5) in the psychological distress between male and female caregivers. Females have more psychological distress than male caregivers.
There was a significant difference (F = 4.640, df = 2.29, P < 0.05) in the mean scores of perceived social support from friends among the caregivers from different domicile. Among three groups, there was a significant difference between caregivers from rural and semi-urban background as well as between caregivers from semi-urban and urban background. There was also a significant difference (F = 4.047, df = 2.29, P < 0.05) in the mean scores of BAS relations among the caregivers from different domicile. Among three groups, there was a significant difference in the mean scores of BAS relations between caregivers from rural and urban background.
The mean total score of burden among the caregivers from different domicile differed significantly (F = 3.644, df = 2.29, P < 0.05). Among three groups, there was a significant difference between caregivers from rural and urban background.
Patients' age and perceived social support from the family correlated positively (r = 0.362, P < 0.05). Significant negative correlation was found between patient's disability and perceived social support from others (r = −0.365, P > 0.01), BAS well-being (r = −0.383, P < 0.05), and BAS perceived severity (r = −0.383, P < 0.05).
There was a significant positive correlation between patient's PANSS-positive score and psychological distress (r = 0.436, P < 0.05). There was a significant negative correlation between patient's PANSS-positive scale and burden perceived severity (r = −0.370, P < 0.05). There was a significant positive correlation between patient's PANSS-negative score and burden due to caring (r = 0.395, P < 0.05). There was a significant positive correlation between PANSS general score and psychological distress (r = 0.366, P < 0.05).
Positive correlation existed between caregiver's age and social support from family (r = 0.447, P < 0.05) and total score social support (r = 0.406, P < 0.05). There was a significant negative correlation between caregiver education and psychological distress (r = 0.57, P < 0.05), and burden due to caring (r = 0.381, P < 0.05). Significant positive correlation was found between social support from friends and support from others (r = 0.451, P < 0.05), total social support (r = 0.822, P > 0.01), and psychological distress (r = 0.461, P < 0.05). There was a significant positive correlation between social support from others and total score of social support (r = 0.828, P < 0.05). There was a significant positive correlation between psychological distress and total score of social support (r = 0.405, P < 0.05). Significant negative correlation was found between psychological distress and burden well-being (r = −0.43, P < 0.05). There was a significant negative correlation between total burden score and PANSS-negative score (r = −0.35, P < 0.05).
Predictors for subjective burden, psychological distress
[Table 2] shows the results of regression analysis, where it was found that the variables such as PANSS-negative symptoms of patients, well-being, marital, perceived severity, and relations domains of burden were the predictors of subjective burden. These variables together accounted for 96.7% of variation in subjective burden (r2 = 0.967). The burden on well-being and respondent's age together accounted for 31.2% of variation in psychological distress (r2 = 0.312) as shown in [Table 3]. There were no significant predictors for the perceived social support of the caregivers.
| Discussion|| |
The reason for the selection of this framework for the current study is that the available literature on the studies conducted in Indian context are very scant in terms of understanding the relationship between these variables. The subjective component of these variables has been less focused both in Western and Indian studies.
The observation on the profile of caretakers has indicated that most of them are married and taking care of the patient might be experiencing burden of multiple roles of care taking. The Mean years of education is 9 years. which would be a risk factor in subjective burden of the caregivers which is supported by the study done by Gutiérrez-Maldonado et al. in which he found that average levels of burden were very high, particularly for mothers and carers with less education. The family profile of the respondents indicated that the majority of them are from nuclear family and semi-urban areas who had less social support compared to caregivers from rural which puts them at the risk of experiencing higher burden. Similar findings have been reported by Murthy et al.,  in which they found that urban families reported significantly higher levels of burden, particularly in the areas of routine family activities and interactions.
In the current study, PANSS assessment indicated moderate levels of positive and negative symptoms for the patients which also would increase the risk of burden for caregivers. Studies have illustrated that higher frequency of relapses, more positive symptoms and lower independent performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predicted higher burden.
In the current study, the emphasis has been given to understand the subjective burden of the caregivers which would assist in planning appropriate interventions. The overall moderate level of burden reported in the study can be corroborated with the study conducted by Magliano et al. where he found subjective burden was higher in schizophrenia.
The different dimensions of the burden and the negative symptoms are the predictors of total burden. These findings are corroborating with the findings for the study by Roick et al.  which states that interpersonal differences (relatives coping abilities and patient contact) and intrapersonal changes (relatives coping abilities, patients negative symptoms, and utilization of community care) predicted family burden.
One of the important finding of the study indicated that the higher level of distress was associated with the caregivers who lived with the patients with mean duration of illness of 12 years. Living with an individual with a SMI contributes to increased rates of psychological distress among family members. , The mean psychological distress score of the respondents was toward caseness (6.18) which shows that the majority of the caregivers fall in the criteria of caseness. McGilloway et al.  reported similar findings that the cases were significantly more likely than noncases to report personal, physical, and financial burden. Though in the current study, well-being burden is similar in both male and female caregivers. The well-being dimension of the burden and the respondent's gender together contribute for the 31.2% variance in the psychological distress of the caregivers. This finding indicates that the female caregivers with more burdens have higher risk of getting psychological distress resulting in anxiety and depressive disorders. Rammohan et al.,  found that the female caregivers experienced greater burden than males, particularly in the areas of family relations, occupational burden, and caregiver health.
As quoted by Cechnicki and Wojciechowska,  people with a large network, including the extra-familial network, who receive a high level of social support, function better in society, do not become regressive in their professional lives, and there are fewer burdens in their family life. The present study confirms the similar findings that when the caregivers perceive more support from friends, they experience less distress.
Social support was the best predictor of caregiver burden.  Studies in the past have documented that the families who perceived a higher level of caregiver burden were those lived in a family with poorer functioning, poor health status, and minimal social support. In the current study, a similar trend has been noticed that caregiver's burden score was positively correlated with their monthly household income and number of family members living with patient.
Awad and Voruganti,  suggested that to improve the social support of the family members, as well as to reduce the psychological distress and burden, the interventions should focus on better treatment for patients, including medications, psychosocial interventions, and rehabilitation services. Other measures such as availability of crisis management, provision of legally mandated community treatment to avert hospitalization, and well-informed and balanced advocacy are also important.
As there is evidence in the effectiveness of the family support groups and family to family support programs which is confirmed by the studies conducted by Bademli and Duman,  it is very important to create such interventions for the families of patients with schizophrenia, that would increase in social support and family function leading to decrease in their perceived subjective burden. Moreover, it was noted that there was an increase in life satisfaction. In addition to the family to family support groups, the need for the professional support as reiterated by Reinhard  is also important to reduce burden by giving practical inputs on managing disruptive behaviors.
| Conclusion|| |
The current study would help the mental health professionals to enhance their existing knowledge on the understanding about the impact of the patients' illness on the caregivers' subjective burden, psychological distress, and the perceived social support. As dealing with the families of patients with mental illness is one of the important areas in provision of holistic care, this literature would help them to address the above-mentioned areas in a more, in-depth manner. These findings also would help them to emphasize on the holistic care for the families of persons with schizophrenia who are admitted in the inpatient facility. This would enhance the overall well-being of the caregivers of the patients with schizophrenia and in turn treatment outcome of the patients.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]