|Year : 2018 | Volume
| Issue : 2 | Page : 68-74
Burden and Expressed Emotion in Caregivers of Schizophrenia and Bipolar Affective Disorder Patients: A Comparative Study
Seema Parija1, Arun K Yadav2, Vanteemar S Sreeraj3, Ashok K Patel2, Jyoti Yadav4
1 Department of Psychiatry, Mental Health Institute, S.C.B. Medical College, Cuttack, Odisha; Department of Psychiatry of IMHH, Agra, Uttar Pradesh, India
2 AIIMS, New Delhi, Delhi, India
3 Department of Psychiatry, NIMHANS, Bengaluru, Karnataka, India
4 JGH, New Delhi, Delhi, India
|Date of Web Publication||28-Aug-2018|
Dr. Arun K Yadav
AIIMS, Room No. 91 CEU, AIIMS, New Delhi 110029, Delhi
Source of Support: None, Conflict of Interest: None
Background: Caregiver burden and expressed emotion have been studied in patients with schizophrenia but literature is less regarding these in bipolar affective disorder (BPAD). No study could be found which compared the caregiver burden and expressed emotion in these two patient groups. Hence, the study is conducted to investigate and compare the caregiver burden and expressed emotion in caregivers of patients with schizophrenia and BPAD. Materials and Methods: Data were collected from outpatient department of psychiatry, Institute of Mental Health and Hospital, Agra regarding sociodemographic characteristics (e.g., age, gender, domicile), followed by burden assessment schedule, family emotional involvement and criticism scale, positive and negative syndrome scale, Young mania rating scale, and hamilton depression rating scale (HDRS) from patients of schizophrenia and BPAD and their caregivers. Descriptive statistics such as mean and standard deviation (SD) and unpaired t test were applied for continuous data and chi square for categorical data. Spearman correlation was used to find correlation. Results: No statistically significant difference between the sociodemographic variable of either patient of schizophrenia and bipolar disorder or their caregivers was observed. Significantly higher total burden (P = 0.01) with mean value of 82.8 (SD = 8.8) in caregivers of patients with schizophrenia compared to BPAD with mean value of 76.7 (SD = 12.3) was noted. Emotional over-involvement was significantly more in patients with BPAD compared to patients with schizophrenia (P = 0.0007). Spearman correlation shows positive correlation among age of caregivers, education, and burden of care in both the groups (P < 0.05 in both groups). Conclusion: The presence of significant amount of burden of care and expressed emotion point out to the need for psychosocial support to the family members for mitigation of the burden and reduction in the expressed emotion, which in turn could reduce the relapse rates and facilitate the caregivers to effectively cope and manage the ill family member.
Keywords: Bipolar affective disorder, caregiver burden, expressed emotion, schizophrenia
|How to cite this article:|
Parija S, Yadav AK, Sreeraj VS, Patel AK, Yadav J. Burden and Expressed Emotion in Caregivers of Schizophrenia and Bipolar Affective Disorder Patients: A Comparative Study. MAMC J Med Sci 2018;4:68-74
|How to cite this URL:|
Parija S, Yadav AK, Sreeraj VS, Patel AK, Yadav J. Burden and Expressed Emotion in Caregivers of Schizophrenia and Bipolar Affective Disorder Patients: A Comparative Study. MAMC J Med Sci [serial online] 2018 [cited 2019 Jun 20];4:68-74. Available from: http://www.mamcjms.in/text.asp?2018/4/2/68/239999
| Introduction|| |
Schizophrenia and bipolar affective disorder (BPAD) are common major mental disorders and are chronic in nature. The degree of ability or disability in chronic mental disorders varies over time and across different life domains. The likely course and outcome of mental disorders vary, and depend on numerous factors related to the disorder itself, the individual as a whole, and the social environment. Caregiver burden refers to the negative feelings and subsequent strain experienced as a result of caring for a chronically sick person. Among the psychotic disorders, schizophrenia is associated with the lowest scores on social functioning and quality of life of all the mental disorders,,, thus, having substantial caregiver burden. Over 90% of patients with BPAD experience recurrences during their lifetime, often within 2 years of the initial episode, and the consequences of recurrent illness are substantial for patients. Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses.
Expressed emotion (EE) is a qualitative measure of the “amount” of emotion displayed, typically in the family setting, usually by a family or caretakers. Theoretically, a high level of EE in the home can worsen the prognosis in patients with mental illness or act as a potential risk factor for the development of psychiatric disease.
It is well established that high family levels of EE are consistently associated with higher rates of relapse in patients with schizophrenia. The first study to undertake the EE measure and connect it to the course of schizophrenia was investigated by Brown where the patients were followed up for 9 months after they were discharged and sent to their homes from hospital. It was found that prolonged contact of patients with the critical caregivers determines the relapse in schizophrenia. Patients with schizophrenia who live with relatives who are critical or hostile towards them have a poorer course of illness when compared to relatives who communicate with more warmth, acceptance, and support.
There have been a few studies that suggest a positive association between EE and relapse.
Miklowitz et al. conducted a cohort study to investigate the association between the course of bipolar disorder and EE, affective style, and lithium therapy among 24 patients. They found a positive association between the families’ EE and relapse. Priebe et al. also conducted a cohort study in 21 patients with bipolar and schizoaffective disorders treated by lithium and found similar results.
However, none of the studies try to compare characteristic of the caregiver burden and EE among schizophrenia and bipolar disorder and compare them as this may give a clue to improve the care of the patients of schizophrenia and BPAD.
| Material and Methods|| |
The study was a hospital based cross sectional study. The study was conducted at the Institute of Mental Health and Hospital, Agra. It is a tertiary referral center with bed strength of 700, and a postgraduate teaching hospital. The hospital has wide catchment areas, which include the states of Uttar Pradesh, Madhya Pradesh, Rajasthan, Haryana, and Uttarakhand. The study population contained patients with disorders attending the outpatient department (OPD) in hospital and diagnosed as either schizophrenia or BPAD. Data were collected over a period of 9 months from July 2012 to April 2013. The inclusion criteria for such patients were age (should be between 18 and 60), patients diagnosed as a case of schizophrenia or BPAD according to ICD-10 (International Classification of Diseases and Related Health Problems − 10) with at least 2 years of duration of illness, and those who consented for the study. The inclusion criterion for primary caregivers (parents/spouse/sibling/children) was age group above 21 years and living with the patient for at least last 1 year. A separate informed consent was obtained from caregiver to participate in the study. Exclusion criteria for the patient were that they should not be suffering from neurological disorders such as seizures, movement disorders, cerebral palsy, or any other co-morbid psychiatric disorder or chronic disorder or using any pharmacological intervention other than the psychotropic drugs. Exclusion criteria for caregivers were that they should themselves be not suffering from any psychiatric disorder, substance dependence, organic syndromes, mental retardation, or chronic physical illness. Only those patients and caregivers were enrolled in the study, who met all the inclusion criteria and none of the exclusion criteria. All the consecutive patients and their caregivers during the study period were approached to participate in the study. The study was approved by the hospital ethics committee. A total of 40 patients of schizophrenia and their caregivers and 40 patients of bipolar disorder and their caregivers gave consent for the study.
Data were collected with the help of pretested sociodemographic and clinical sheet from patients and caregivers. Burden assessment schedule (BAS) was used to assess caregiver burden. EE was measured with the help of family emotional involvement and criticism scale (FEICS), which has 14 items with two subscales: perceived criticism (PC) and intensity of emotional involvement. Positive and negative syndrome scale (PANSS) and Young mania rating scale (YMRS) were used to clinically characterize the patients of schizophrenia and bipolar disorder respectively.,
Data were entered in an MS excel sheet. Descriptive statistics such as mean, standard deviation (SD), frequency and percentage were used for quantitative and categorical data respectively. Contingency tables were made. Chi square test, unpaired t test, and spearman correlation were applied to analyze the data. Analysis was performed through the Statistical Package for the Social Sciences version 16.0 software (SPSS Inc., Chicago, IL, United States). The level of significance (alpha) was taken at 0.05.
| Results|| |
[Table 1] shows the comparison of sociodemographic variables between the two patient groups. Most of the patients belong to Hindu religion (n = 38, 36 respectively) (P = 0.4). In that, 80% of patients with schizophrenia group and 60% with BPAD (P = 0.051) were married. Almost half of the patients studied till high school and above (n = 23, 20 respectively) (P = 0.50). Most of the patients in both the groups belonged to low socioeconomic group (70 and 72.5%, respectively) (P = 0.8) and comparable number resided in rural area (52.5 and 57.5%, respectively) and urban areas (47.5 and 42.5%, respectively) (P = 0.7).
|Table 1: Sociodemographic characteristics of patients with schizophrenia (N = 40) and bipolar affective disorder (N = 40)|
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[Table 2] shows the comparison of sociodemographic variables between the two caregiver groups. Most of the caregivers were married in both groups (n = 34, 36 respectively). Most caregivers studied below high school (n = 23, 21 respectively). Fifty-five percentage of caregivers of patients with schizophrenia were employed compared to 62.5% of caregivers of BPAD patients. There were no significant differences with respect to sex (P = 0.8), marital status (P = 0.5), education (P = 0.7) as well as occupational status (P = 0.5) among the two groups.
Age of the patients and their relatives of schizophrenia have been compared with those of BPAD in [Table 3]. There was no statistical significant difference in either age of patients (P = 0.9) or caregivers (P = 0.9) in two groups. Mean age of onset of illness was 26.6 years (SD = 6.9) and 23.1 years (SD = 3.9) in the patients with schizophrenia and bipolar disorder, respectively, which was statistically significant (P = 0.007). The patients with BPAD were hospitalized more often compared to the patients (mean = 3.5 and 2.1, SD = 2.5 and 1.5, respectively) with schizophrenia, which was also statistically significant (P = 0.003). It was found that each patient with BPAD had at least two previous affective episodes, thus, qualifying for ICD criteria and a maximum of 12 episodes were noted with a mean of 5.7 (3.1) episodes.
[Table 4] shows that the range of YMRS score was 8–41 with mean score 26.6 (SD = 8.7). In patients with schizophrenia in PANSS score mean positive, negative and general scores were 24.4 (SD = 7.4), 24.5 (SD = 6.9), and 35.2 (SD = 6.7), respectively.
[Table 5] shows the comparison of caregiver burden in the two groups as reflected in BAS scores. There was a significantly higher total burden with a mean value of 82.8 (SD = 8.8) in caregivers of patients with schizophrenia compared to BPAD with a mean value of 76.7 (SD = 12.3) (P = 0.01).
Higher burden was noted in caregivers of schizophrenia on caregivers’ routine (P = 0.05), physical and mental health (P = 0.003), taking responsibility (P = 0.004), (P = 0.01), patient behavior (P = 0.007), and caregiver strategy (P = 0.02). Spouse related burden could be assessed only where caregivers were spouses of patients. There were 14 spouses of patients with schizophrenia and 16 spouses of patients with bipolar disorder among the caregiver groups. Higher spouse related burden subscale score was noted in schizophrenia compared to the BPAD (P = 0.009).
[Table 5] also shows the comparison of expressed emotion in the two groups as reflected in FEICS scoring. Emotional over-involvement (EOI) was significantly more in patients with BPAD with a mean of 3.4 (SD = 1.1) compared to patients with schizophrenia with a mean of 2.7 (SD = 0.7) (P = 0.0007). There was no statistical significant difference in PC experienced in both the groups (P = 0.09). Spearman correlation shows positive correlation between age of caregivers, education, and burden of care in patient of schizophrenia (P < 0.05). While spearman correlation showed negative correlation with age and marital status in the patients with BPAD.
| Discussion|| |
This study was conducted on patients with schizophrenia and BPAD and their caregivers visiting OPD. BAS by Thara et al. and FEICS by Shields et al. were used in the present study to assess the caregiver burden and expressed emotion respectively. BAS is a comprehensive and widely used tool for the assessment of the caregivers’ burden. Its reliability and validity are adequate and appropriate to the population under study. It has been used extensively in Indian population.,, FEICS is also a reliable instrument, which has been used in Indian studies for the assessment of expressed emotion.
Sociodemographic variables such as sex, marital status, and residence were compared using Chi square method. There were no significant differences in the sociodemographic profile of patients or caregivers in both the groups. Hence, the groups were comparable.
The mean age of onset was significantly higher in schizophrenia than in BPAD. It is well established that the age of onset of schizophrenia varies widely, spanning much of early adulthood, peaking in males during late adolescence to early adulthood, and later in females in their mid- to late 20s. Among the females, there is another spike in disease incidence during middle age., The age of onset of bipolar disorder is most commonly around 20 years, which is substantially lower than that of unipolar depression. Because of the bimodalage distribution of schizophrenia, the findings of higher mean age of onset of the disorder in schizophrenia than the BPAD patients is within the expected range.
The number of hospitalizations was more in BPAD group compared to that in schizophrenia group, which is probably due to episodic nature of bipolar illness requiring more hospitalizations, especially during episodes of mania.
In the present study, the burden perceived by caregivers of schizophrenia was significantly more than that in BPAD. However, the scores show more moderate-to-severe burden in both the disease groups. Further analysis of the areas of burden revealed that the burden was statistically significant more in schizophrenia group in the following areas of BAS − spouse related, caregiver’s routine, physical and mental health, taking responsibility, patient’s behavior, and caregiver’s strategy. However, there is no statistically significant difference in external support, support to the patient, and other relations.
Similar findings were obtained by Chakravarti et al. They also compared relatives of schizophrenia and BPAD patients by using Pai and Kapur’s interview schedule. It was found that the extent of both objective and subjective burden was significantly more in the relatives of patients with schizophrenia. The burden was principally felt in the areas of family routine, family leisure, family interaction, and finances.
Other studies on burden of caregivers of persons with schizophrenia have reported significant burden on caregivers with over 90% of families, experiencing moderate-to-severe burden. The burden on caregivers of persons with schizophrenia is evident in multiple areas such as patient care, finance, physical and emotional burden, family relations and occupation which is in consonance with the study by Sreeja et al. who compared burden between family caregivers of patients having schizophrenia and epilepsy and found the same. Further the study of Kumar and Raguram also found that caregivers of persons with schizophrenia experienced moderate level of burden (>80 using BAS). The burden in caregivers of schizophrenia in different domains in the present study was also found to be similar to the studies by Kumar and Mohanty.,
However, a study by Chadda et al. found no significant differences in caregiver burden in both groups. This conflicting result probably reflects the variable course of burden experienced in caregivers of BPAD due to the episodic nature of the illness. There are differences in inherent nature of both disorders. While schizophrenia has a more chronic and continuous course with periodic exacerbations and relapses, BPAD follows a pattern of recurrent episodes of hypomania, mania, euthymia, and depression or a mixed state of manic behavior and depressed mood leading to different magnitude of burden in two illnesses.
In this study, all the patients with BPAD were suffering from manic episode during the assessment. Those with depressive episodes were not included in the study. Chakrabarti et al. found that the objective burden on caregivers of hospitalized patients and outpatients with bipolar disorder was significantly higher than for those with unipolar depression. They looked at burden of care in 90 patients and their caregivers. The sample included 17 patients with unipolar ailments, and the remaining 73 were having bipolar disorder. They found that the objective burden on caregivers of bipolar patients was significantly higher than for those caring for major depressive disorder patients. They suggest that this finding may have been caused by the social disruption of the manic phase in bipolar disorder. Dore and Romans reported that 30% of the participating caregivers found the patients’ mania to be more distressing than the patients’ depression, 19% found the opposite, and 46% found both equally distressing. Perlick et al. reported that caregivers found depressive symptoms to be more burdensome than manic symptoms. Ostacher et al. found that the burden in caregivers is acutely related to the patients’ depression. Future studies should be undertaken to assess caregiver burden during depressive, hypomanic and euthymic phase of this illness.
The role of demographic variables in burden of care was also examined in the present study. A positive correlation among the age of caregivers, education, and burden was observed suggesting that with the advancing age of caregivers, there is an increment in the magnitude of the perceived burden. This is consistent with findings of earlier studies. When caregivers were older, they were more worried about the future of their ill family member that who will take care of them in future, and also that they cannot provide care well to the ill member of the family., The negative impact of care giving on health and financial status is well documented in the literature,, and this is especially more in elderly caregivers due to poor social, financial, and health conditions.
Both schizophrenia and BPAD are major psychiatric disorders, which invariably produce burden on caregivers. The relative magnitude of the burden was compared in the present study, which is higher in the caregivers of schizophrenia. The quantum of burden present in the caregivers, points out to the need for addressing the burden and related issues of the family members as well especially in patient with schizophrenia.
In the present study, EOI was significantly more in bipolar group but PC was more in patients with schizophrenia which, could not reach statistical significance. Studies have reported interactional differences in schizophrenia and bipolar patients. Miklowitz, Goldstein, and Nuechterlein found that relatives of schizophrenia patients were more critical and intrusive than relatives of bipolar patients during a problem-solving interaction conducted during a post hospital period. In addition, bipolar patients were more verbally supportive of their relatives than schizophrenia patients, whereas schizophrenia patients were more self-denigrating than bipolar patients., This supports the present finding. The high level of perceived comments and EOI seem to indicate significant family pathology.The analysis of demographic correlates of EE revealed that younger the patient, more was the EE. Patients, who were single, experienced significantly more EE than married persons. This finding is in support with the findings by Brown.
Present study has tried to capture all the possible correlates of burden and EE in caregivers of schizophrenia and BPAD patients, but it has certain limitations. Sample size was modest, which makes it difficult to generalize the result. Random sampling was not taken. It was a cross sectional study. Bipolar group included only those with most recent episode mania. Examiners, who rated the subjects on the BAS and FEICS scale, were not blind to the diagnosis, which might have caused rater bias in the evaluation of the subject. All the patients in this study were receiving antipsychotics and/or mood stabilizers, which may have had an effect in this study.
| Conclusions|| |
The primary aim of the study was to estimate and compare the burden of care and expressed emotion in caregivers of the patients with schizophrenia and BPAD. The results of the study revealed considerable burden of care in families of the patients and a significantly greater burden of care in caregivers of schizophrenic patients. The caregivers of BIPAD patients were perceived as having greater over-involvement than the caregivers of schizophrenia. The presence of significant amount of burden of care and expressed emotion point out to the need for psychosocial support to the family members for the mitigation of the burden and reduction in the EE, which in turn could reduce the relapse rates and facilitate the caregivers to effectively cope and manage the ill family member. Additional studies would be required to further delineate the factors associated with both burden of care and EE in the caregivers.
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Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]