|Year : 2022 | Volume
| Issue : 1 | Page : 63-68
Coping and burden among caregivers of patients with major mental illness
Varsha Thakur1, Padmavathi Nagarajan2, Ravi Philip Rajkumar3
1 Department of Psychiatric Nursing, CIMS College of Nursing, Kullu, Himachal Pradesh, India
2 Department of Psychiatric Nursing, College of Nursing, JIPMER, Puducherry, India
3 Department of Psychiatry, JIPMER, Puducherry, India
|Date of Submission||11-Jun-2020|
|Date of Decision||23-Jul-2020|
|Date of Acceptance||27-Jul-2020|
|Date of Web Publication||08-Oct-2021|
Dr. Padmavathi Nagarajan
College of Nursing, JIPMER, Puducherry
Source of Support: None, Conflict of Interest: None
Background: A shorter duration of inpatient stay and early discharge from the hospital for mental illness has expanded the role of the caregiver. Many of the caregivers experience a substantial burden due to the additional responsibilities of caring for a mentally ill individual. Lack of coping ability may increase their level of burden. Materials and Methods: A cross-sectional, descriptive research design was used to investigate coping strategies and burden among the caregivers of patients with major mental illness and to assess the relationship between them. Caregivers of patients with major mental disorders – schizophrenia (n = 16), bipolar affective disorder (n = 15), and depression (n = 15) were recruited from the psychiatric services of a tertiary level hospital through the convenience sampling. The family burden interview schedule (FBIS) by Pai and Kapur and coping checklist was used to assess the level of burden and coping strategies, respectively. Results: The majority of caregivers (52.2%) experienced a moderate level of the burden as rated by the FBIS. Disruption of the family routine activities was found to be the domain with the highest burden score among caregivers. Only marginal differences in burden scores were found across diagnostic groups (schizophrenia, 1.75 ± 0.57 bipolar disorder and depression 1.86 ± 0.74). Problem-focused coping was the strategy most frequently used by caregivers. Conclusion: Regardless of diagnosis, caregivers of patients with major mental illness experience substantial burdens. Appropriate interventions could improve coping strategies and reduce the burden of caregivers. This, in turn, could lead to improved treatment outcomes in patients with major mental illness.
Keywords: Caregiver burden, coping, mental illness
|How to cite this article:|
Thakur V, Nagarajan P, Rajkumar RP. Coping and burden among caregivers of patients with major mental illness. Indian J Soc Psychiatry 2022;38:63-8
|How to cite this URL:|
Thakur V, Nagarajan P, Rajkumar RP. Coping and burden among caregivers of patients with major mental illness. Indian J Soc Psychiatry [serial online] 2022 [cited 2022 May 25];38:63-8. Available from: https://www.indjsp.org/text.asp?2022/38/1/63/327822
| Introduction|| |
In most societies, family members play a pivotal role in taking care of mentally ill individuals. Chronic mental illness imposes significant burdens on caregivers, across various domains physical, psychosocial, and economic. This may exhaust their adaptive coping strategies and lead to ineffective coping. Hence, it is essential to explore the burdens faced by caregivers of patients with major mental illness to gain insight into their problems and the coping strategies used by them to understand and improve the treatment outcome.
According to the World Health Organization (WHO) report, an estimated 450 million people are currently suffering from mental disorders. Mental disorders are among the leading global causes of morbidity and disability. As per the Global Burden of Disease Report, depression is the leading cause of disability among mental disorder, leading to 13% of the total disability-adjusted life years lost. The burden of mental disorder in India is immense. The National Mental Health Survey conducted in the year 2015–2016 by NIMHANS estimated that the weighted lifetime prevalence of severe mental disorders was 1.9% in the Indian population, and 0.8% of the population was currently suffering from severe mental disorders. The trend toward a shorter duration of inpatient stay and early discharge from the hospital for mental illness has expanded the role of the caregiver.
In India, where access to rehabilitation services is limited and there is a lack of social welfare mechanisms for the care of the mentally ill, the role of the family is indispensable. In India, the majority of patients with major mental illnesses live with their families. While this practice of maximum deinstitutionalization has allowed patients to be rehabilitated in a natural setting, it has also placed significant physical, psychosocial, and economic burdens on caregivers.
Caring is an issue of pivotal concern in the treatment and rehabilitation of a patient with major mental disorders. The onset of mental illness among a member of the family is a period of turmoil. The WHO defines caregiver burden as “the emotional, physical, financial demands, and responsibilities of an individual's illness that are placed on the family members, friends, or other individuals involved with the individual outside the health-care system.”
The burden of care may be divided into two different domains: subjective and objective. Objective burden refers to the activities of daily life (ADLs) which includes performing household chores and other routine activities. Subjective burden refers to the emotional and psychological impact of mental illness on the family members, especially caregivers.
Coping is defined as “cognitive and behavioral efforts to manage demands perceived as taxing or exceeding the resources of an individual.” A coping strategy is a problem-solving method which could potentially help in overcoming, minimizing, or tolerating stress or conflict. Coping can be influenced by particular symptoms of mental illness, as well as by caregiver factors and the burdens faced by them. Hence, the present study aimed to examine the coping strategies and burden among caregivers of patients with major mental illness (bipolar disorder, depression, and schizophrenia) attending a tertiary care hospital and to assess the relationship between them.
| Materials and Methods|| |
This was a cross-sectional, descriptive study conducted in the department of psychiatry of a tertiary level hospital in South India. The study setting is a General Hospital Psychiatric Unit with both inpatient and outpatient facilities. Moreover, patients are treated by multidisciplinary team, including clinical psychologists, psychiatric social workers, and occupational therapists. Informed consent was obtained from each study participant before their participation. Forty-six caregivers of patients with major mental illness (schizophrenia, bipolar disorder, and depression) were recruited from the outpatient department through convenience sampling during September and October 2017. Sample size was calculated based on the study conducted by Chakraborty et al. with an expected mean difference between the groups in coping strategies of 0.39 and 5% precision and 80% power. The sample size calculated was 46 using open Epi software version 3.01 (Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia (US)). Of these, 16 (34.8%) were caregivers of patients with schizophrenia, 15 (32.6%) were caregivers of patients with bipolar affective disorder (BAD), and caregivers of patients with depression each. Patients who had more than 2 years of illness duration and those caregivers who had been living with the patients for more than 1 year and who were between 18 and 60 years of age were included in the study. Caregivers of patients with an acute episode of illness and those with a history of substance use were excluded from the study.
Ethical approval was obtained from the Institute Ethical Committee for human studies. Caregiver burden was assessed using the family burden interview schedule (FBIS) by Pai and Kapur, which includes 24 items grouped into six domains: financial burden, disruption of routine family activities, disruption of family leisure, disruption of family interaction, the effect on the physical health of others, and effect on the mental health of others. Each item is rated on a three-point scale (0 = No burden, 1 = Moderate burden, and 2 = Severe burden.). This scale has been developed in Indian setup, keeping in mind the socioeconomic and the cultural conditions in India. Inter-rater reliability and coefficient were calculated to be 0.9 and 0.8, respectively, and it is valid and reliable for both clinical and research purposes. Coping was assessed using coping checklist (CC) which was developed by Nehra et al. and consists of 14 statements. Cronbach's alpha of the scale was found to be 0.62.
| Results|| |
The study sample consisted of 46 participants. Majority of caregivers were females (n = 33, 71.7%) and 13 (28.3%) were males; 24 (52.2%) were between 18 and 30 years of age; 33 (71.7%) of the caregivers were currently unemployed; 17 (37%) participants lived in an extended family and 29 (63%) lived in a nuclear family.
The various coping strategies employed by the caregivers are summarized in [Table 1]. Problem-focused coping was the strategy most frequently employed by the caregivers (28 [60.9%]).
|Table 1: Various types of coping strategies adopted by the caregivers (n=46)|
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The level of burden based on different domains is given in [Table 2]. Based on the scores rated by FBIS, the score of 17–32 was considered as having a moderate level of burden. Accordingly, the majority of participants had a moderate level of burden 24 (52.2%); 15 (32.6%) had a mild level of burden (score of 0–16), whereas 7 (15.2%) subjects had severe level (score of 33–48). Among individual sub-domains, the mean score was the highest for disruption of family activities 2.00 ± 0.84.
|Table 2: Level of the burden of caregivers based on different domains of family burden interview schedule (n=46)|
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Among the three groups of study participants, caregivers of patients with schizophrenia had a nonsignificantly lower burden score (1.75 ± 0.57) when comparing to the caregivers of patients with BAD and depression which was found to be 1.86 ± 0.74 for each. Only, a marginal difference was observed in the mean scores of three groups.
Comparison of caregiver's burden based on gender is illustrated in [Table 3]. The mean score of the financial burden was found to be higher among male caregivers (7.142 ± 33). Similarly, the mean score for overall burden was found to be higher among male caregivers (25.07 ± 7.72) in comparison with female caregivers which was calculated as 20.48 ± 11.04. One-way ANOVA test revealed that there was no significant gender difference in the burden.
Further, the analysis regarding the association of coping strategies with selected demographic variables revealed that there was a statistically significant association between problem-focused coping and marital status (P < 0.05). Other variables did not have any statistically significant association with coping strategies.
Various coping strategies adopted by the male and female caregivers according to the different domains of CC are shown in [Table 4]. For each coping strategy, mean scores of male and female caregivers were similar. One-way ANOVA showed that there was no significant gender difference in the coping strategies adopted by male and female caregivers.
|Table 4: Comparison of coping strategies of caregivers based on gender (n=46)|
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Further, Brief Psychiatric Rating Scale was used to assess the severity of illness. It showed that 43 (93.5%) patients were in remission, wherea 3 (6.5%) patients had some residual symptoms. In addition, the level of functioning was assessed by Global Assessment Functioning Scale. It was indicated that 4 (8.7%) patients had severe symptoms such as suicidal ideation and serious impairment in social and occupational functioning; 9 (19.6%) had moderate symptoms, and the symptoms were mild in 11 (23.9%) patients. Majority of patients 16 (34.8%) exhibited transient symptoms and had slight impairment in social and occupational functioning. Three (6.5%) had minimal symptoms and had good functioning in all areas and involved in a wide range of activities. Three (6.5%) patients had superior level of functioning with no symptoms.
| Discussion|| |
The present study suggested that a majority of caregivers experienced a moderate level of burden (52.2%). The findings of the study are consistent with the study done by Kumari et al. Another follow-up study by Maji et al. found that caregivers had severe burden (90%) when patients were hospitalized but during follow-up, the burden was much lessened to be 35.3%. It may be assumed that during in-patient stay, the severity of the symptoms in addition to other factors related to hospitalization might have increased the burden of caregivers.
Disruption of family routine activities is an area on where caregivers experienced an increased level of burden. Most of the families recognized that mentally ill patients were unable to complete ADL which exacerbated the burden. The current study also found that the mean score of disruption of routine family activities domain was significantly high as compared to other domains. A similar finding was reported by Nehra et al., and the authors suggested that family activities were disrupted in both BAD and schizophrenia.
Financial burden occurs due to the expenditure on patient's illness and jobless status. This was the second most common burden felt by the caregivers. This finding was supported by many researchers, and a study conducted in an Indian setting also found the same among caregivers of patients with schizophrenia and depression.
In the present study, burden among caregivers of schizophrenia, depression and bipolar affective disorder (BPAD) were reported to be marginally different which infers that all mental illnesses demand almost equal care. Whereas, a couple of other studies reported that caregivers of patients with schizophrenia experienced more burden., Heru and Ryan found that caregivers of patients with depression were reported to have consistent burden during psychiatric hospitalization as well as after 1 year of follow-up when compared to the caregivers of patients with bipolar disorder who were reported to have more burden during the in-patient stay.
Even though it was not statistically significant, the results of the current study indicated that male caregivers experienced more burden than females. This is in contrast with the findings reported by Gania et al. who found that females had more burden while caring for their patients with bipolar disorder. Being illiterate, having low socioeconomic status, advancing age, being married were also found to be associated with the level of burden. Another study by Kumar and Gupta found that caregiver burden was significantly higher in the female spouse, employed caregivers and spouse caregivers married within the last 1 year and the nonresponsive episodes placed a higher degree of burden on the caregivers.
Coping patterns are determined by various factors including situational and personal variables. The results of the present study revealed a significant positive correlation between age and problem-focused coping (P < 0.05). Collusion had a negative correlation with family income (r= −0.315, P = 0.035). It was also found that married caregivers were less likely to 'seek social support' (r = −0.357, P = 0.016).
A study conducted in a tertiary care hospital in Chandigarh observed that gender difference appeared to be an important correlate. Female caregivers frequently used problem-focused coping strategy (<0.05) and seeking social support was significantly associated with female caregivers (0.05).
Madathumkovilakatha et al. studied coping strategies used by caregivers of patients with severe mental illness towards aggressive behaviours. The authors reported that adaptive coping strategies – planful problem solving and seeking social support were used by 40% of caregivers to deal with aggressive behaviour. Only 4.4% of caregivers resorted to escape avoidance which is a maladaptive coping strategy.
Grover et al. suggested that caregivers of patients with schizophrenia use a mixed type of coping mechanisms to deal with the stress of caregiving and the coping strategies were associated with variables such as caregiver burden, social support, psychological morbidity in the caregivers, and psychopathology in patients.
The similar study conducted by Walke et al. indicated that severe burden accounted for 40.9% and moderate for 59.1%. These findings differ from our study in many aspects. Significantly, our study found that severe burden was reported by few of the caregivers (15.2%) only. The probable reason is due to the less severity of symptoms and most of the patients (93.5%) were in remission. Also, many patients had better social and occupational functioning. Another difference is that the highest amount of burden was seen in the areas of physical and mental health, spouse related, and in areas of external support in Walke et al.'s study. In contrast, our study found that disruption of routine family activities as the most affected burden. Authors reported that the most frequently used coping styles were practicing religion, active coping, and planning. Chakraborty et al. found that psycho-education significantly improved the coping abilities and reduced the burden of caregivers from multiplex families. A similar finding was supported by Kulhara et al. in their study among caregivers of patients with schizophrenia in India. Grover et al. reported that positive aspects of caregiving experience in primary caregivers of patients with BPAD were associated with a better quality of life of the caregivers.
Many other studies that investigated caregiver burden and coping also found that caregivers of both BAD and schizophrenia experienced same levels of burden and used a similar pattern of coping. It was also suggested that caregivers faced more burden on taking responsibility and physical and mental health and frequently used problem focused coping strategies, followed by seeking social support.,, Caregivers of the married patients generally reported higher burden than those of the unmarried patients.
Limitations of the study
The limitations include single center, nonprobability sampling technique, tertiary care setting, limited sample size, nonrandomized design.
| Conclusion|| |
The study attempted to assess the coping and burden among caregivers of patients with major mental illness. The study results indicate that it is important to identify the difficulties and the burden of caregiving among the caregivers of patients with major mental illness. Majority of caregivers 24 (52.2%) had a moderate level of burden. Caregivers of three groups of mental illnesses experienced equal burden, although it was marginally different. The present study showed that problem-focused coping strategy was most frequently used by the caregivers. Appropriate interventions are needed to reduce the burden of caregivers to improve the treatment outcome in patients with major mental illness.
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]