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ORIGINAL ARTICLE Table of Contents  
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Cross sectional study on burden and psychiatric morbidity in the caregivers of patients of major psychiatric illness in a tertiary healthcare centre


1 Assistant Professor, Department of Psychiatry, PK Das Medical College, Palakkad, Kerala, India
2 Junior Resident, Department of Psychiatry, Yenepoya Medical College, Mangalore, Karnataka, India
3 Professor and Head, Department of Psychiatry, Yenepoya Medical College, Mangalore, Karnataka, India
4 Associate Professor, Department of Psychiatry, Yenepoya Medical College, Mangalore, Karnataka, India

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Date of Submission12-Dec-2020
Date of Acceptance20-Jan-2021
Date of Web Publication31-Aug-2021
 

  Abstract 


Introduction: Psychiatric illnesses such as bipolar affective disorder, major depressive disorder, schizophrenia, and dementia can cause significant burden to patient as well as family members. About 14% of the global burden of disease is attributed to neuropsychiatric disorders. Half of the patients with psychiatric illness reported disability in all three domains of work, social, and family life.
Aims: (1) To study if caring for patients with major psychiatric illness will lead to significant caregiver's burden. (2) To find the association between caregiver's burden and psychiatric morbidity among the caregivers.
Materials and Methods: It is a cross-sectional study conducted at a tertiary care teaching hospital after obtaining institutional ethical clearance. One hundred caregivers of outpatients diagnosed with major psychiatric illness including schizophrenia, bipolar affective disorder, dementia, and major depressive disorder for a period not <2 years were included in the study. The data were using recorded by means of Mini-International Neuropsychiatric Interview and burden assessment schedule.
Results: Caregivers of patients with major depressive disorder experienced significantly less burden than those with bipolar disorder or schizophrenia. Spouses of patients experienced significantly more burden compared to other family members providing care. The study also revealed that caregivers caring for patients with longer duration of illness were found to have higher chance of experiencing moderate or severe levels of burden and that, as the age of the carers increased, they were more likely to experience higher levels of burden and caregivers with lower per-capita income experienced severe burden (P = 0.022). It was observed that several carers had psychiatric morbidities with Generalized Anxiety Disorder (56.9%, n = 45) being most commonly reported. This was followed by Major Depressive episode, current at 22.5% (n = 40) and dysthymia at 17.4% (n = 31).
Conclusion: Caring for patients with major psychiatric illness leads to significant caregivers' burden. It can also lead to psychiatric morbidities among the caregivers.

Keywords: Burden assessment, caregiver's burden, caregiving, carers, psychiatric morbidity


How to cite this URL:
Akhilesh M, Priyamkari A, Kakunje A, Karkal R. Cross sectional study on burden and psychiatric morbidity in the caregivers of patients of major psychiatric illness in a tertiary healthcare centre. Arch Ment Health [Epub ahead of print] [cited 2021 Dec 7]. Available from: https://www.amhonline.org/preprintarticle.asp?id=325049





  Introduction Top


Psychiatric illnesses such as bipolar affective disorder, major depressive disorder, schizophrenia, and dementia can cause significant burden to patient as well as family members. About 14% of the global burden of disease is attributed to neuropsychiatric disorder.[1] According to National Mental Health survey, 2015–2016 India, the overall weighted prevalence for any mental morbidity was 13.7% lifetime and 10.6% current mental morbidity[2] Half of the patients with psychiatric illness reported disability in all three domains of work, social, and family life, and greater disability was reported in patients with epilepsy, depression, and bipolar disorder.[2] Care is thus necessary for these patients.

Globally, the total number of patients with chronic mental illness who live with their families or friends is estimated to give a figure near to 50%–90%.[3],[4] In India, majority of patients with severe mental illness stay with their families,[5] and families have been the mainstay of care giving for patients with mental illness.[6] The family caregiver also supervises treatment and provides emotional support to the patient.[6] In another community study conducted in the city of Mangalore, India, it was found that family-centered approach was found effective in addressing the illness and health-related factors beyond boundaries of primary care.[7]

The term “caregiver burden” is used to describe the physical, emotional, and financial toll of providing care. The most common mental health issues identified among carers are depression, anxiety, and burnout which occur when they slip beyond exhaustion.[8] Chronic and long-standing exposure to stressors has been shown to be associated with psychiatric morbidity.[9] It is also understood that caring for a patient with psychiatric illness can cause much more burden than caring for patients with chronic physical illness.[10]

Several studies on interventions for caregivers of those with severe mental illness found some evidence to support the efficacy of psychoeducation and support groups in improving the experience of caregiving and reducing psychological symptoms.[11] Caregivers of patients with schizophrenia would benefit from psychoeducation[12] and mutual support,[13] whereas psychoeducation alone would have a large impact on caregiver burden in caregivers of bipolar patients.[14]

In this study, we set out to explore the experience of caregiver burden in individuals caring for patients with major psychiatric illnesses, to assess psychiatric morbidity of carers, and to find, whether there is an association between caregiver's burden and psychiatric morbidity among the caregivers.


  Materials and Methods Top


It is a cross-sectional observational study, conducted at Department of Psychiatry Yenepoya Medical College, Mangalore, India, from May 2017 to April 2018. The sample size obtained was 100, estimated using the formula SS = 4 PQ/D2. Ethical clearance was obtained from the institutional ethical committee. The caregiver's included in the study were (a) caregivers of outpatients suffering from major psychiatric illness for a period not <2 years, and who are living with the patient; (b) major psychiatric illness included were schizophrenia, bipolar affective disorder, dementia, and major depressive disorder as diagnosed by the International Classification of Diseases-10 (ICD-10) criteria; and (c) caretakers of age group between 20 and 70 years. Caregivers of patients with any psychiatric illness other than those mentioned above and caregivers with preexisting major psychiatric illness were excluded from the study.

A specially designed semi-structured porforma on sociodemographic, clinical, and caregiver variables, the burden assessment schedule (BAS), and the Mini-International Neuropsychiatric Interview (MINI) were used as assessment tools in this study.

  1. The sociodemographic variables covered the following details of caregiver: age, gender, level of education, relationship with the patient, and socioeconomic status. Clinical variables included duration of illness, availability of insurance, severity of illness as shown by treatment mode – either outpatient management alone or inpatient care also
  2. The BAS was developed at the Schizophrenia Research Foundation, India, to assess the burden on family caregivers of patient with chronic mental illness. It is a semi-quantitative, 40-item questionnaire measuring different areas of objective and subjective caregiver burden. Each item is rated on a 3-point scale. The responses are “not at all,” “to some extent,” and “very much.” Some of the items are reverse coded. Scores ranged from 40 to 120 with higher scores indicating greater burden, i.e., mild burden (0–40), moderate burden (41–80), and severe burden (81–120)[15]
  3. The MINI is a structured diagnostic interview questionnaire, developed jointly by psychiatrists and the clinicians of the United States and Europe, for Diagnostic and Statistical Manual of Mental Disorder-IV and ICD-10 psychiatric disorders.[16]


Chi-square test and Fisher's exact test were used where appropriate for testing the association between caregiver burden and psychiatric morbidity, employing the Statistical Package for the Social Sciences, version 23.0 (IBM Corporation, New York, USA). Post hoc tests were done where required to ascertain which cells were significantly different.


  Results Top


In the present study, more than half of the caregivers were males and majority were married. The mean age of the caregivers was 41.5 (standrad deviation – 9.01) years. Majority of the participants were literate with 37% having at least an education up to secondary school. Only 19% of the participants were illiterate. Nearly 38% of the participants belonged to middle class as measured by Modified BG Prasad scale. Majority of the patients receiving care had a diagnosis of major depressive disorder (42%), followed by bipolar disorder (29%), schizophrenia (24%), and least was dementia (5%). Majority of the caregivers were married (76%), were from rural background (53%), had kutcha house (52%), and were employed (65%). Nearly 58% of the participants belonged to Hindu religion. Spouses comprised 59% of the caregivers [Table 1].
Table 1: Sociodemographic data

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Among the 100 participants; 39% experienced mild burden, 52% had moderate levels of burden, and 9% had severe burden levels [Figure 1].
Figure 1: Burden assessment schedule score

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Among the 100 caregivers studied, 79 had some psychiatric morbidity. Most commonly observed was generalized anxiety disorder (n = 45, 56.96%), followed by major depressive episode, current (n = 40, 50.63%) and dysthymia (n = 31, 39.24%) [Table 2].
Table 2: Psychiatric morbidity among caregivers

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Other psychiatric morbidities observed included Major depressive episode (n = 8, 10.1%); major depressive episode with melancholic features (n = 2, 2.53%), suicidality (n = 4, 5.06%), panic disorder with (n = 1,1. 26%) and without agoraphobia (n = 7, 8.86%), social phobia (n = 5, 6.32%), and alcohol dependence (n = 27.34, 18%) and abuse (n = 1, 1.26%).

It was noticed that caregivers of patients with major depressive disorder experienced significantly less burden (P < 0.001) than those with bipolar disorder or schizophrenia. Our study also showed that spouses of patients experienced significantly more burden compared to other family members providing care (P < 0.001) as shown in [Table 3].
Table 3: Association between various demographic variants and burden

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Caregivers caring for patients with longer duration of illness were found to have more chance of experiencing moderate or severe levels of burden as shown in [Table 4].
Table 4: Pair- wise comparison of burden and duration of patient illness

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[Table 5] depicts that, as the age of the carers increased, they were more likely to experience higher levels of burden.
Table 5: Association between age of caregiver and burden

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Caregivers with lower per-capita income experienced severe burden (P = 0.022) [Table 6].
Table 6: Pair-wise comparison of burden and per-capita income

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We explored the association between caregiver burden and major depressive episode current using Fisher's exact test. It was retested using Post hoc analysis with P value adjusted with Bonferroni correction (P = 0.0083) to avoid Type 1 error which also revealed statistical significance. Caregivers experiencing mild level of burden were less likely to develop major depressive episode, current [Table 7].
Table 7: Association between burden and psychiatric morbidity

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  Discussion Top


The concept of burden of care was first defined by SH Zarit in1980.[17] Over the course of time, more researchers have started to take an interest in the study of burden of care and have developed various scales to measure its extent. In many developing countries, community-based mental health services and effective formal support systems are unavailable. In addition, the global trend toward shorter hospital stay has shifted the responsibility of the day-to-day care of patients with chronic mental illness to informal caregivers within the family setting.[18] The responsibilities involved in rendering care to a family member with major psychiatric illness are enormous, and caregivers may become overwhelmed by the responsibilities associated with these roles.

Chronic and long-standing exposure to stressors has been shown to be associated with psychiatric morbidity.[9] Carers of the people with psychiatric illnesses have significantly high level of depression even in the absence of a prior mood disorder.[19] In this study, we were able to demonstrate significant caregiver burden in individuals taking care of patients with major psychiatric disorders and a range of psychiatric morbidity in the carers.

The mean BAS score of caregivers in the present study was 64.63 ± 10.67. This is similar with the extent of burden experienced by caregivers of patients with major psychiatric illness from previous studies.[20],[21] In a similar study conducted in the caregivers of patients attending outpatient department of NIMHANS in 2002, BAS was used to assess the extent of caregiver burden. The mean score of BAS was 65.50.[22] In yet another study conducted in 2013, the caregiver burden was compared between carers of patients with schizophrenia and bipolar disease. The total BAS score for caregivers of patients with schizophrenia was 68.75 and those of bipolar disorder was 64.45.[19] These findings show that the perception of burden by caregiver in the last decade remains the same with almost similar burden experienced by carers in 2002, 2013, and 2018.

Our study also showed that spouses of patients experienced significantly more burden compared to other family members providing care (P < 0.001). This finding is similar to observations in previous studies which have evaluated caregiver burden experienced by spouses of patients with psychiatric illnesses.[23],[24] In a study conducted at multispecialty tertiary care government hospital in New Delhi, caregivers of eighty patients with depression were studied for clinical and sociodemographic variables influencing the level of caregiver burden. This study revealed that caregiver burden was significantly higher in spouses, employed caregivers, and spouse caregivers married during the last 1 year.[24]

It was observed in our study that several carers had psychiatric morbidities with generalized anxiety disorder (56.9%, n = 45) being most commonly reported. This was followed by major depressive episode, current at 22.5% (n = 40) and dysthymia at 17.4% (n = 31). In a study conducted among the first-degree relatives of schizophrenia patients, it was observed that of the total of 255 carers screened, 62 (24.3%) had some psychiatric morbidity, of which 39 (62.9%) had major depressive episode, current.[25] This was similar to the percentages reported in our study. This implies that a good number of caregivers might screen positive for psychiatric disorders themselves, and the current practice of treating the patient alone might not be holistic in managing the illness as the caregivers also need to be effectively treated.

Our study revealed that caregivers, who were spouses of patients, were from a poor economic background and taking care of patients with long duration of psychiatric illness were especially vulnerable to experience caregiver burden. These caregiver variables may help in designing screening programs and interventions for addressing burden and psychiatric morbidity in individuals taking care of patients with psychiatric illnesses.

There is limited evidence for effective interventions addressing caregiver burden. In a randomized controlled trial conducted on caregivers of Indian patients with schizophrenia, structured psychoeducational interventions consisting of monthly sessions for 9 months have been found to be significantly better than routine outpatient care on several indices including psychopathology, disability, caregiver support, and caregiver satisfaction.[26] The use of problem-solving coping by caregivers showed a significant correlation with higher level of functioning in patients.[27]

Caregivers of patients with bipolar disorder undergo a considerable amount of burden. In India, family caregivers are the primary source of support and care for their ill relatives. The burden faced by family members of patients with BD often results in physical and mental health consequences. Family-focused therapy of 12 sessions delivered over 3–4 weeks on an inpatient basis showed positive outcomes of reductions in expressed emotions as well as stress experienced by the caregivers.[28]

The strengths of our study were that it was performed in an important area of need, which is largely less addressed caregiver burden in families of people living with major psychiatric illness. Other minor psychiatric illnesses which might carry lesser burden were excluded from this study. This study included the carers of both male and female genders. The study was conducted in a semi-urban setting, while most studies in the country have been conducted in urban settings, and the majority of the Indian population lives in rural and semi-urban areas. Standardized instruments which have been widely used in similar populations were employed. The limitations were relatively small sample size which may not have been powered to examine the correlation of all the factors with caregiver burden. Furthermore, there is chance of potential bias as there was no blinding done during the assessment. Factors such as personality, any comorbid physical illness, expressed emotions from caregivers, or other conflicts in the family which could have impacted on caregiver burden were not examined. The study cannot be generalized to the community as the study population was from a hospital-based population. Furthermore, the cross-sectional nature of our study limited causal inferences. Longitudinal data would have given further insight into the extent of burden among caregivers.

Intervention for caregiver burden – our study revealed that caregivers, who were spouses of patients, were from a poor economic background and taking care of patients with long duration of psychiatric illness were especially vulnerable to experience caregiver burden. These caregiver variables may help in designing screening programs and interventions for addressing burden and psychiatric morbidity in individuals taking care of patients with psychiatric illnesses.


  Conclusion Top


This study has shown high rates of caregiver burden and also established correlates which could be associated with caregiver burden and this can be utilized in designing specific interventions for better outcome of patients with major psychiatric illness and their caregivers. People with chronic mental illness and their families, therefore, require long-term support and care in order to ameliorate their stress and burden. There is a need to develop standardized family interventions which are feasible within Indian settings with the available infrastructure and resources.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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Correspondence Address:
Anupama Priyamkari,
Department of Psychiatry, Yenepoya Medical College, Deralakatte, Mangalore - 575 018, Karnataka
India
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/AMH.AMH_62_20



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