|Ahead of print publication
Relation of expressed emotions and burden of care in primary caregivers to severity of illness in schizophrenia patients: A cross-sectional, hospital based study
Mandakini Bhowmik1, Sudhir J Gaekwad2, Suprakash Chaudhury1, Jyoti Prakash3, Daniel Saldanha1
1 Department of Psychiatry, Dr. D Y Patil Medical College, Dr. D Y Patil Vidyapeeth, Pimpri, Pune, Maharashtra, India
2 Department of Psychiatry, Bharati Vidyapeeth (Deemed to be University) Medical College and Hospital, Sangli, Maharashtra, India
3 Department of Psychiatry, Armed Forces Medical College, Pune, Maharashtra, India
|Date of Submission||08-Dec-2021|
|Date of Decision||06-Apr-2022|
|Date of Acceptance||13-Apr-2022|
Department of Psychiatry, Dr. D Y Patil Medical College, Dr. D Y PatilVidyapeeth, Pimpri, Pune – 411 018, Maharashtra
Source of Support: None, Conflict of Interest: None
Background: Negative expressed emotions are a significant characteristic of the family milieu that has been found to predict symptom relapse in schizophrenia and may be related to severity of illness and burden of care. Aim: The aim of this article is to study the expressed emotions and burden of care in primary caregiver of patients suffering from schizophrenia, with relation to severity of illness. Methods: This cross-sectional, hospital-based study included 60 schizophrenia patients and their primary caregivers. Positive and Negative Syndrome Scale (PANSS), modified Global Assessment of Functioning scale (mGAF), and Family Emotional Involvement and Criticism Scale (FEICS) were applied on the patients. Burden Assessment Schedule (BAS) was applied on the caregivers. Results: Patients were mostly male, symptomatic, diagnosed as paranoid schizophrenia and aged between 20 and 50 years. Caregivers were predominantly married and employed. Expressed emotions and burden of care were significantly related to caregiver and patient education, gender, employment, marital status, type of family, diagnosis, duration of illness, caregiver relation, duration of care giving, and severity of schizophrenia symptoms. Burden of care showed significant variations according to patient and caregiver economic status, domicile, religion, and age. Both expressed emotions and burden of care had moderately positive and statistically significant correlation with severity of the disease. Conclusion: Both expressed emotions and burden of care in primary caregiver of patients suffering from schizophrenia are influenced by a number of sociodemographic, clinical, and disease-related factors. Thus increase or decrease in expressed emotions and burden of care is caused by the complex interaction of various factors that the patients and caregivers experience.
Keywords: Burden of care, caregivers, expressed emotions, schizophrenia
|How to cite this URL:|
Bhowmik M, Gaekwad SJ, Chaudhury S, Prakash J, Saldanha D. Relation of expressed emotions and burden of care in primary caregivers to severity of illness in schizophrenia patients: A cross-sectional, hospital based study. Med J DY Patil Vidyapeeth [Epub ahead of print] [cited 2022 Dec 6]. Available from: https://www.mjdrdypv.org/preprintarticle.asp?id=344182
| Introduction|| |
Shift towards deinstitutionalization and encouragement of community-based psychiatric care has put the family in a major role of caring for the schizophrenia patient. This can cause physical and mental distress to the caregivers of the patient. Burden of care is mainly divided into two types- subjective and objective. The emotional response of the caregiver towards the social and behavioral disturbances of the mentally ill is subjective burden. Quantifiable needs like cost of the therapy, disruption of daily routines, and patient's dependence on the family for self-care and financial living costs is called objective burden. Poor government and community support system, stigma associated with mental illness, and lack of knowledge regarding illness can also all act as stressors on the family members.,
A variety of social factors influence the onset, course and outcome of schizophrenia patients. The term Expressed Emotions (EE) is used to describe an index composed of Negative EE (emotional over involvement, hostility, critical comments) and Positive EE (positive remarks and warmth). Negative EE are a significant characteristic of the family milieu that has been found to predict symptom relapse in schizophrenia. Schizophrenia patients in India have a better prognosis due to majority of people staying in joint families and giving patients better social support than their western counterparts. There is well-established western literature showing that EE in the family members can cause relapse and poor prognosis in schizophrenia patients. However, there is limited data available on what effect EE and care giver burden have on schizophrenia patients in India. EE reflects the stress on a caregiver and can be related to burden of care. Therefore, the present study was undertaken to investigate the relationship of caregiver burden and negative EE with severity of illness, sociodemographic variables and positive and negative symptoms of patients with schizophrenia.
| Material and Methods|| |
This cross-sectional, hospital-based study was conducted in the Psychiatry department of Bharati Vidyapeeth Hospital, Sangli, from December 2017 to June 2019 after approval of the Institutional Ethical Committee. (BV (DU) MC&H/Sangli/IEC/320/18 dt 17th August 2018).
Study population included Schizophrenia (diagnosed according to ICD-10) patients attending the outpatient department or admitted in the inpatient department along with their primary caregivers. A calculated sample size was initially thought of with adequate power at the time of the beginning of the study, however after a retrospective study of the patient records of the psychiatry department showed that a ICD 10 diagnosis of Schizophrenia was diagnosed in a relatively smaller number of patients, it was decided that a convenience-based sample size of 60 patients and primary caregivers will be taken.
Inclusion criteria for patients were age between 18 and 50 years and minimum 1 year duration of illness. Exclusion criteria for patients were presence of neurological disorders, any chronic disabling disorders or other co-morbid psychiatric disorders. Inclusion criteria for primary caregiver was age above 21 years, being related to the patient and living with the patient for at least 1 year during illness. Exclusion criteria for care givers were presence of any psychiatric disorder, neurological disorder, or any major surgical intervention, hospital admission in past 6 months. The Mini International Neuropsychiatric Interview (MINI) Screen 7.0.2 version was used to rule out psychiatric disorders in the primary caregiver.
Demographic and clinical information pro forma
A semi-structured pro forma to collect demographic data about the patients and their caregivers along with the clinical information of the patients.
Positive and negative syndrome scale (PANSS)
PANSS is a clinician-administered, 30-item semi-structured interview consisting of a Positive scale, Negative scale and a General Psychopathology Scale. Higher scores indicate greater symptom severity. Cronbach alpha for positive scale was 0.73, for negative scale was 0.83, and for general psychopathology scale was 0.79. The scale also has good validity, good test retest reliability and good inter-rater reliability.
Burden assessment schedule (BAS)
BAS is a clinician rated, structured interview consisting of 20 questions measuring 5 different areas of subjective caregiver burden. Total scores range from 40 to 120. Higher scores indicate greater subjective burden of care. Cronbach alpha ranges from 0.62 to 0.82 for each of the factors. The test has good validity, split half reliability, and test retest reliability.
Family emotional involvement and criticism scale (FEICS)
FEICS is a self-report or clinician administered 14-item scale with two subscales: Perceived Criticism (PC) and Intensity of Emotional Involvement (IEI). The scale can be applied on both the patient and the caregiver to measure the EE from both their perspectives. Higher score indicates higher EE. The scale has good reliability and good construct and criterion validity with Cronbach's alpha of 0.82 for PC subscale and 0.74 for the IEI subscale.
Modified global assessment of functioning scale (mGAF)
The mGAF scale accesses the overall functioning of the patients. It consists of nine levels to indicate the severity of impairment and severity of symptoms in the patient. Higher the score better is the overall functioning of the patient. The scale had good interclass correlation coefficient (0.81) and good inter-rater reliability.
Patients along with their primary caregiver, who fulfilled the inclusion criteria, were selected for the study. After explaining the details of the study a written informed consent was obtained. Demographic and clinical information pro forma, the PANSS, mGAF scale, and FEICS questionnaire were applied to the patients. The semi-structured questionnaire and BAS and were applied to the primary caregivers.
Statistical analysis was done using SPSS 22.0 (IBM, Atlanta, USA). Associations of sociodemographic, clinical profile of patients with caregiver burden, and EE were done using mean, standard deviation, unpaired t test, and analysis of variance (ANOVA). Correlation was done using Pearson's correlation coefficient. The results were considered significant at P < 0.05 level (two-tailed).
| Results|| |
Out of the 60 patients, 10 (16.7%) were hospitalized for the first time, for 45 (75%) were admitted 2-4 times while five patients had been admitted five times or more. Total duration of illness was 1 year for 15 (25%), 2-4 years for 20 (33.3%), and >4 years for 25 (41.7%) patients. Majority (83.3%) of the patients had at least one relapse and 41.7% of them had a long illness course lasting more than 4 years. 54 of the 60 patients included in the study were diagnosed with paranoid schizophrenia while the rest were cases of hebephrenic schizophrenia. The demographic characteristics, PANSS and mGAF scores of the subjects are shown in [Table 1]. Majority (41.1%) of the caregivers had less than 2 year of caring for the patient, 20 (33.33%) were caring for 2-4 years and 16 (25.6%) for >4 years. FEICS and BAS scores of primary caregivers of schizophrenia patients are given in [Table 2]. Association of EE of primary caregivers with patient's demographic and clinical profile and caregiver's sociodemographic data is shown in [Table 3] and [Table 4], respectively. Patient's gender, education, employment, socioeconomic status, domicile, marital status, diagnosis, number of admissions, and duration of illness were significantly associated with the caregiver's subjective burden of care [Table 5]. Caregiver's relation to the patient, duration of care giving, marital status, religion, age, gender, and employment status were significantly associated with the burden of care [Table 6]. There was no statistically significant correlation between EE and burden of care [Table 7]. There is moderate positive correlation between total PANSS and total EE. Those patients with greater illness severity and greater general psychopathology had primary caregivers with higher EOI compared to others. There was moderate positive correlation between negative symptoms of schizophrenia and impact on relation with others. Other areas of caregiver burden were not significantly correlated to PANSS scores [Table 7]. The mGAF scores were significantly associated with caregiver total EE and PC [Table 8].
|Table 1: Sociodemographic and clinical profile of the Schizophrenia patients and caregivers|
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|Table 2: Family emotional involvement and criticism scale (FEICS) and Burden Assessment Schedule (BAS) scores of primary caregivers of schizophrenia patients|
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|Table 3: Association of EE of primary caregivers according to patient's demographic variables, clinical profile|
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|Table 4: Association of total EE of primary caregivers according to their sociodemographic and caregiving data|
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|Table 5. Distribution of total burden of care in primary caregivers according to patient's sociodemographic and clinical data, relation with the patients and duration of caregiving|
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|Table 6: Association of burden of care in primary caregivers according to their sociodemographic data|
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|Table 8: Comparison of Schizophrenia patient modified general assessment of functioning scale (mGAF) scores with family emotional involvement and criticism scale (FEICS) scores|
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| Discussion|| |
This study was conducted in a tertiary care hospital which received patients from nearby urban as well as rural areas. Our study had similar patient profile to few other Indian studies., Most of the studies had patients in the age group of 20-50 years, male, Hindu, educated up to high school, unemployed, diagnosed with paranoid schizophrenia, having long duration of illness, and many admissions in the past. Our study had more number of single patients and patients belonging to nuclear families compared to the other studies. This difference was probably because the population composition varied in the catchment areas of the different hospitals. The sociodemographic profile of the 60 caregivers included in the study was also similar to few studies conducted in tertiary care hospitals in India., However, our study had more male caregivers than the other studies. Also, our study had difference in caregiver and patient socioeconomic status, domicile, and family type as many of the caregivers were living separately from the patients before the illness onset but had to shift to take care of them. Psychopathology of our patients according to PANSS scores was higher than a study conducted in Mangalore on a group of stable schizophrenia patients while our study was conducted on symptomatic inpatients. Our study had similar mean general psychopathology scores to the study conducted on symptomatic schizophrenia patients in Agra.
Expressed emotions and burden of care
In general, EEs are higher in the Euro-American settings when compared to those of Asian/developing nations. Similarly, mean FEICS scores of primary caregiver in our study were lower than a similar study conducted in Spain. Our study conducted on symptomatic schizophrenia patients had higher FEICS scores indicating higher EE in the caregivers than that of a study conducted in Mangalore on 20 stable schizophrenia out patients. Studies have shown that EE in the caregiver decreases as the patient improves and becomes stable as is the case in the above study. However, in a study conducted in Bangalore the mean BAS scores of primary caregiver of symptomatic schizophrenia patients was higher than in our study. Just like EE, burden of care is also culturally affected. The difference in burden of care can be due to the different socio-cultural profile of the two studies. The study in comparison had 45.7% males, 80% Hindus, and 48.6% single patients which are quite different from our patient profile.
EE and patients sociodemographic variables
Our study found that EE of the primary caregiver were statistically more in those patients who had a higher educational level. This finding was in contrast to a study by Carrà et al. Other studies did not find any significant association between patient education and EE., This discrepancy can be due to the difference in measuring education levels; for example our study differentiated between below high school and above high school while another differentiated between mean years of education, while still another differentiated between illiterate, below matriculate, matriculate, intermediate, graduate, and higher qualification.
In agreement with an earlier study, we found that unemployed patients perceived significant greater criticism than employed patients.
The observation that unmarried patients were experiencing more caregiver EE and PC than married patients are similar to a previous study. Our study population mainly consisted of middle aged male patients who were at the prime age of marriage. Relatives find it difficult to get the patients married due to stigma of psychiatric diagnosis. This can increase EE and PC in them.
EE and patient clinical variables
Primary caregivers taking care of hebephrenic schizophrenia patients had higher total EE and PC when compared to those taking care of paranoid schizophrenia patients. This is understandable as hebephrenic schizophrenia patients have more negative symptoms, behavioral disorganization and psychosocial impairments compared to other types of schizophrenia which causes increased anger, and irritability in the caregivers.
Our study found that total EE and PC were significantly higher in those caregivers whose patients got readmitted for treatment. This finding was supported by a Chinese study. More number of admissions indicate disease relapse and deterioration in the patient which can impair his functioning in the long run. It has been well-established that increased EEs is a predictor of relapse and our study also documents that.
Our study found that as duration of illness increased, critical comments (PC) also significantly increased in the primary caregiver. Similar findings were reported in a meta-analysis. The primary caregivers start getting frustrated seeing the chronic and progressive course of the disease and criticize the patient for some of the residual symptoms that remain in spite of treatment.,
EE and primary caregiver variables
Total EE and PC were significantly higher in the male primary caregivers when compared to female caregivers in the present study. This is in contrast to most study findings of increased PC and EOI amongst the female caregivers. This can be due to majority of the caregivers being male (66.1%) in our study group. In India, traditionally the males make a daily living and the females take care of the family. But when a male is forced to take care of a patient for some reason, he has greater total EE as compared to a female mainly due to inexperience regarding care giving.
Our study found that caregivers who were educated up to high school had lower EOI. Educated caregivers can understand the psychopathology of schizophrenia better and not blame the patient or themselves for the disease. In agreement with a previous study, in our study PC and EOI were significantly more in the employed primary caregivers when compared to the unemployed caregivers. Working caregivers are more prone to be frustrated by the additional responsibility on top of a job and they resort to criticizing and trying to control the patient.
In agreement with an earlier study, total EE and EOI was significantly more in married caregivers. After marriage, there are additional responsibilities and taking care of a patient on top of that can cause rise in total EE in a married caregiver.
Siblings had significantly higher PC while parents had higher EOI when compared to the rest of the primary caregivers. Some findings of our study were similar to the results of a study in Pakistan which found that parents and sisters had significantly more EOI than the rest. They also found that spouses were more hostile and critical which did not match with our study findings. These differences can be due to the different cultural background of the two studies.
Caregiver total EE especially critical comments increases as the duration of care giving increases, because negative symptoms like frustration, burnout emerge as care giving continues for a long time, and caregivers resort to negative EE as a maladaptive way of dealing with the disorder.,,
Burden of care and patient sociodemographic variables
The finding that primary caregivers experience greater subjective burden (feel less appreciated) when they take care of a male patient is supported by many studies.,, A possible explanation is that male patients do not appreciate the work that the caregivers do to take care of them.
In agreement with a previous study, we observed that primary caregivers feel unappreciated while caring for unemployed patients. Feeling appreciated causes the caregiver to feel satisfaction/proud of taking good care of the patient and their family. However, this positive aspect of care giving is not reached when they feel unappreciated by others.
Caregivers looking after financially stable patients were more likely to feel unappreciated. This can be because these patients might be able to pay for their daily expenses and treatments on their own and they might take the other aspects of care giving for granted. Consistent with earlier studies, we also found that the caregiver's relationships with others were negatively affected when the patient was from a low socioeconomical stratum., Poor financial condition means the caregiver has to work extra hard which can take up the time usually spent relaxing or spending with family. This causes increased subjective burden.
In conformity with an earlier study, we found that caregivers of urban patients experience more burden of care. Cost of living and treatment is greater in urban areas and so the caregivers experience increased burden than their rural counterparts. Apart from the patient's spouses, the other related caregiver's subjective burden of care was higher if the patient was married. Caregivers who are not the patient's spouses are forced to take care of the patient as well as deal with the family that they married into. This increases subjective burden in the caregivers.
Burden of care and patient clinical variables
In consonance with earlier studies, we found that primary caregivers of hebephrenic schizophrenia experienced more subjective burden of care, had more health-related problems and had more relationship problems than others.,
Burden of care and primary caregiver variables
The spouses of the patients had problems maintaining healthy relationships with others, difficulty maintaining a job, felt there is no solution to their problems and had greater subjective burden of care than other primary caregivers. Similar results were found by an earlier study. When spouses are the primary caregiver of the patient they may face isolation, poor social and financial support from the other family members which can increase burden of care in them.
Widowed primary caregivers face the most burden of care compared to others. They experience health problems, relationship problems, feel unappreciated, and have difficulty taking care of the patient. These can be due to lack of support from the other family members. In addition, widowed caregivers are more likely to be aged and this increases the risk of health problems while caring for the patient.
We found that elderly (>50 years) primary caregivers experience greater burden of care compared to middle aged caregivers. This is consistent with the findings of earlier studies.,,, The elderly caregivers have difficulty earning a living, easy fatigability, health morbidities, and may also find it difficult to understand the signs and symptoms of schizophrenia. These factors increase their burden of care.
Female caregivers have significantly more negative impact on well-being, negative impact on relation with others, and perceived severity of disease when compared to male primary caregiver. This was consistent with other studies., Burden of care is more in females as they also have to look after the other family members along with the patient.
Correlation of expressed emotions with burden of care
Our study did not find any significant correlations between EE and the primary caregiver subjective burden of care. This was supported by few Indian studies., However other studies done in India, Italy, Pakistan, and China have shown statistically significant associations between burden of care and EE for schizophrenia patients.,,, The difference is findings could be due to the different study settings and the different scales used to measure burden of care and EE.
The finding of weak negative correlation between primary caregiver critical comments and burden of care, that is, those caregivers showing less EE were more likely to suffer from higher burden of care, supports the findings of an earlier study. The finding of a weak positive correlation between primary caregiver EOI and well-being can be explained by the fact that caregivers who are emotionally over involved often keep the patients' needs over their own and sacrifice/neglect personal needs which can cause deterioration of health and poor well-being.
Severity of illness and EE
The observation of a moderate positive correlation between severity of schizophrenia symptoms and EE of primary caregiver is in agreement with an earlier study. Patients with greater illness severity and greater general psychopathology had primary caregivers with higher EOI when compared to others. This means that greater caregiver EOI can increase the severity of psychopathology in a schizophrenia patient. Both the studies were cross-sectional and could not establish cause and effect between EEs and severity of schizophrenia. However, a 6-month prospective Turkish study, about effects of EE on PANSS scores of symptomatic schizophrenia patients, showed that total PANSS scores, positive, and negative symptoms scale scores were significantly higher in patients having caregivers with high critical comments and hostility.
We observed that majority of the patients with severe functional impairments, that is, 'inability to function in almost all areas of functioning' had caregivers with greater EE and criticality. This is supported by the finding that greater number of severely ill or disabled schizophrenia patients lived with high EE families.
Severity of illness and burden of care
Consistent with earlier research, our study found that subjective burden of care (impaired relationships) has moderately positive correlation with negative symptoms of schizophrenia.,, Negative symptoms can cause grave socio-occupational impairments. This in turn causes the caregiver to spend more time taking care of the patient and lose out on spending time relaxing or interacting with others. Our study did not find any association between patient functioning and burden of care. In contrast, a Nigerian study found that burden of care giving of schizophrenia patients increased as patient functioning decreased. This difference in finding can be because of different cultural setting and because of the use of different scales to measure patient functioning and caregiver burden.
It was a hospital-based study and a majority of inpatients were included. The sample size was modest. Therefore, the findings of this study cannot be extrapolated to the whole population. The study was undertaken by a single investigator who was not blinded to the aims and objectives of the study. This could have caused observes bias. There can be recall bias as the patients and relatives were also asked about events in the past. This study was a cross sectional study. Therefore, we could not establish any cause and effect from the significant correlations found in the study. A prospective study design would have strengthened the study much more. While total study population was adequate, certain subgroups like spouses of the patient were few in number.
| Conclusion|| |
In caregivers of Schizophrenia patients, both expressed emotions and burden of care are influenced by a number of sociodemographic, clinical- and disease-related factors. Increasing severity of the disease was associated with increasing expressed emotions and increased caregiver burden. Increasing over involvement of the primary caregiver was associated with increasing general psychopathology in the patient. Increasing negative symptoms in the patient was associated with increasing impairment of relationships with the caregivers.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8]