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 Table of Contents  
ORIGINAL ARTICLE
Year : 2022  |  Volume : 3  |  Issue : 3  |  Page : 81-85

Family care burden and its association with psychological distress among caregivers of chronic patients with schizophrenia


1 Department of Psychiatric Social Work, Central India Institute of Mental Health and Neuro Sciences, Dewada, Rajnandgaon, Chhattisgarh, India
2 Department of Psychiatry, Central India Institute of Mental Health and Neuro Sciences, Dewada, Rajnandgaon, Chhattisgarh, India
3 Department of Psychiatric Social Work, Ranchi Institute of Neuro-Psychiatry and Allied Sciences, Ranchi, Jharkhand, India
4 Department of Psychiatric Social Work, Central Institute of Psychiatry, Ranchi, Jharkhand, India

Date of Submission12-Apr-2022
Date of Decision25-May-2022
Date of Acceptance28-May-2022
Date of Web Publication14-Sep-2022

Correspondence Address:
Mr. Lokesh Kumar Ranjan
Department of Psychiatric Social Work, Central India Institute of Mental Health and NeuroScience, G. E. Road, Dewada Chowk, Kopedih Road, Rajnandgaon - 491 441, Chhattisgarh
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jphpc.jphpc_16_22

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  Abstract 


Background: Family burden among caregivers of patients with schizophrenia encounter comprehensive caregiving challenges to maintain their own physical as well as psychological distress and it can deteriorate the family functioning. Aim: The aim of this study is to assess the relationship between family care burden and psychological distress among caregivers of chronic patients with schizophrenia. Methods and Materials: The study was cross-sectional. It was conducted at the outpatient department of the Central Institute of Mental Health and Neuro Sciences, Dewada, Rajnandgoan, Chhattisgarh, India. A total of 260 samples were selected through a purposive sampling technique and informed about the study after giving their informed consent. Sociodemographics, a burden assessment schedule, and depression, anxiety, and stress scale were all part of the interview. Result: The study results showed a high level of care burden (70.8%) in the caregivers of patients with schizophrenia. The majority of the caregivers reported a severe level of stress (59.2%), anxiety (56.2%), and depression (48.5%). The result of the study indicated a significant positive relationship between family care burden and stress, anxiety, and depression among caregivers of chronic patients with schizophrenia. Conclusion: The study suggests the high prevalence of care burden which strongly contributes to psychological distress. These caregivers need psychosocial interventions to enhance the overall family environment to have a better adaptive state among families.

Keywords: Family care burden, impact, psychological distress, schizophrenia


How to cite this article:
Ranjan LK, Gupta PR, Kiran M, Singh NK. Family care burden and its association with psychological distress among caregivers of chronic patients with schizophrenia. J Public Health Prim Care 2022;3:81-5

How to cite this URL:
Ranjan LK, Gupta PR, Kiran M, Singh NK. Family care burden and its association with psychological distress among caregivers of chronic patients with schizophrenia. J Public Health Prim Care [serial online] 2022 [cited 2022 Oct 1];3:81-5. Available from: http://www.jphpc.org/text.asp?2022/3/3/81/354814




  Introduction Top


Schizophrenia refers to the dysfunction in the cognitive, affecting behavior, thinking, and emotional domain.[1] In India, the prevalence of schizophrenia is estimated to be 0.64%.[2] It is also a long-term disability-causing crippling and chronic severe psychiatric disorder. In a previous study in India, 53.7% of schizophrenia patients showed certifiable disabilities.[3] Therefore, it has an impact on the patient as well as their family members. The ability to form social relationships is frequently lessened, and employment opportunities are diminished.[4] Caregivers play an important role in assisting family members who are suffering from psychiatric illnesses.

Caregiver burden is defined as “a psychological state that results from a combination of physical work, emotional, and social pressure, such as the financial constraints that emerge from caring for patients.”[5] According to a previous study, roughly 42.31% of caregivers with schizophrenia patients in India had a severe level of care burden.[6] Caregivers dedicate a substantial amount of time to their patient's care, which includes assisting with daily activities and providing financial, emotional, and social assistance.[7],[8] Therefore, family members' freedom, personal space, and social activities are restricted and increasing their burden.[9] They may be suffering from emotional, physical, and financial difficulties, which can lead to psychological distress.[10],[11] They also perceived a wide range of emotions, from secluded and grief to guilt, anger, and stigma.[12]

Psychological distress refers to an emotional suffering condition and is also characterized by symptoms of stress, anxiety, and depression.[13] These symptoms can range from a person showing a lack of interest, restlessness, feeling tense sadness, hopelessness, and nervousness, which may be accompanied by some somatic symptoms such as headache, fatigue, and insomnia.[14],[15] Caregivers of these patients are at risk of psychological distress such as anxiety, sadness, loss, anger, despair, hopelessness, shame, guilt, tension and communication pressures, and disability in the care process.[16],[17] In some previous studies, the prevalence of stress, anxiety, and depression symptoms among caregivers of schizophrenia patients ranged from 68% to 98.67%, 32% to 100%, and 29.4% to 100%, respectively.[8],[16],[18]

Indian studies have clarified that the burden and psychological distress are very high in caregivers of persons with schizophrenia.[4],[6],[16],[18] There are no Indian studies describing family care burden predictors that contribute to the variance of stress, anxiety, and depression among caregivers of chronic patients with schizophrenia. We intend to look at the area of family care burden and to know the predictive role of family care burden in stress, anxiety, and depression among caregivers of chronic patients with schizophrenia.


  Methods and Materials Top


The study was conducted from January 2021 to July 2021. The sample was drawn from the outpatient department (OPD) of the Central India Institute of Mental Health and Neuro Sciences, Dewada, Rajnandgoan, Chhattisgarh, India, through the purposive sampling technique. A total of 260 samples were selected for this investigation. Caregivers were interviewed using sociodemographic sheets, caregiver burden was evaluated by the Burden Assessment Schedule (BAS) and psychological distress was evaluated by the Depression Anxiety Stress Scales (DASS).

Inclusion criteria

Patients who were already diagnosed as per the ICD-10 DCR[19] criteria for schizophrenia. Caregivers who were living with at least 5 years of the patient's illness. Both gender (male and female) and those caregivers who gave written informed consent for the participants were selected for the study.

Exclusion criteria

Those caregivers who had chronic debilitating physical illness and history of past/current psychiatric consultation were not included in the study.

Instruments

Sociodemographic datasheet

The sociodemographic datasheet developed for the present study consisted of variables such as age, gender, education, occupation, family type, family income, and domicile.

Burden assessment schedule

BAS was developed by Thara et al.[20] It reveals the caregiver's perceptions and provides valuable and culturally relevant insights into burden. This is a 40-item semi-quantitative scale that assesses nine different aspects of caregiver burden, both objective and subjective. Each item is rated on a 3-point scale (“not at all,” “to some extent,” or “very much” with a total score ranging from 40 to 120 with a higher score indicating a greater burden). This test has a test–retest reliability coefficient of 0.80 and Cronbach's alpha internal consistency factor ranges from 0.71 to 0.82. Therefore for the requirement of the present study, the cutoff has been taken as 40 were no experienced burden and those who scored <80 for caregivers who had experienced lower burden and those who scored more than 80 for caregivers who had experienced higher burden to maintain homogeneity within the group.

Depression Anxiety Stress Scales-21

Lovibond and Lovibond were developed in a total of 21 items.[21] DASS-21 to measure the negative emotional states of depression, anxiety, and stress. Respondents are asked to assess how much they have experienced each condition in the past week using a four-level severity/frequency scale. A high score indicates a high level of depression, anxiety, and stress. This test has a test–retest reliability coefficient of 0.48, and Cronbach's alpha internal consistency factor ranges from 0.89 to 0.96.

Ethics and informed consent

The present study was carried out with the approval of the Ethical Research Committee of the Central Institute of Mental Health and Neuro Sciences, Dewada, Chhattisgarh, India. The participants were allowed to ask questions and doubts were clarified before the study. Participation in the study was fully voluntary and participants had the opportunity to refuse to participate at any time. Participants' confidentiality, human rights, and other ethical issues were ensured during the study.

Statistical analysis

The statistical analyses were done with the help of the statistical package for the social sciences version 25.0 for Windows, Manufactured by IBM, New York, USA. The descriptive variables from demography were tested using mean, standard deviation, and Chi-square. The difference between study variables in both groups was calculated using mean and standard deviation (t-test). Person's correlation was used to see the correlation between family care burden and stress, anxiety, and depression among caregivers of chronic patients with schizophrenia. The multiple linear regression analysis was done to see the variance of family care burden and stress, anxiety, and depression among caregivers of chronic patients with schizophrenia. The statistical significance was considered to be P < 0.05 for the present study.


  Results Top


A total of 260 caregivers of chronic schizophrenia patients participated in the research. [Table 1] reveals the sociodemographic details of the caregivers of chronic patients with schizophrenia. The average age of the caregivers of patients with schizophrenia was 45.42 (SD = 10.59), with a range of 24–65 years. The caregiver's average length of stay with patients was 20.35 years (SD = 7.67). The average age of the schizophrenia patients was 32.92 (SD = 9.54), with a range of 20–60 years. The average age of onset of the illness (schizophrenia) was 26.05 years (SD = 9.11). The average duration of illness (schizophrenia) was 6.72 years (SD = 2.57). The majority of participants were the patient's wives (28.8%). More than half of the participants were female (54.6%) while another majority were male (45.4%). The majority of the caregivers were educated up to the primary level (29.6%). In occupation, the majority of participants were working as a housewife (25.4%). The majority of the respondents (79.6%) were living in a nuclear family. More than half of the caregivers belonged to middle family income status (55.4%) and with residing in rural areas (61.5%).
Table 1: Sociodemographic profile of the participants (n=260)

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[Table 2] reported the prevalence of family care burden among caregivers of chronic schizophrenia patients who scored very high on the BAS. The results showed caregivers of chronic patients with schizophrenia had 53.5% physical and mental health burden, 36.9% external support burden, 66.9% caregiver's routine burden, 32.7% support patient burden, 74.6% taking responsibility burden, 32.3% other relation burdens, 56.2% patient's behavior burden, 40.8% caregiver's strategy burden, and 70.8% all over family care burden. The mean and standard deviation of the BAS score of the caregivers were 72.89 ± 9.88.
Table 2: Prevalence of family care burden among caregivers of chronic patients with schizophrenia

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[Table 3] reported the prevalence of stress, anxiety, and depression among caregivers of chronic patients with schizophrenia based on DASS-21 scores at severe levels. The results showed 59.2% of stress, 56.2% of anxiety, and 48.5% of the severe level of depression and 13.8% of stress, 28.1% of anxiety, and 21.9% of the extremely severe level of depression among caregivers of chronic patients with schizophrenia.
Table 3: Prevalence of depression, anxiety, and stress among caregivers of chronic patients with schizophrenia

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[Table 4] shows the care burden contributes significantly to the prediction of stress, anxiety, and depression among caregivers of chronic patients with schizophrenia (F (3,256) =21.686, P = 0.000). Overall family care burden contributes 20.3% to stress, anxiety, and depression and the remaining 79.7% factors were attributed to the variable which is not included in the study. Overall family care burden strongly contributes to the variance on stress (beta = 0.190, t = 2.776, P = 0.006), anxiety (beta = 0.209, t = 3.695, P = 0.000), and depression (beta = 0.222, t = 3.208, P = 0.002).
Table 4: Linear regression model with care burden of caregivers as dependent variable and stress anxiety, and depression as independent (n=260)

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  Discussion Top


Our results reported that 70.8% care burden was perceived in caregivers of chronic patients with schizophrenia. Caregivers had higher levels of burden in the areas of physical and mental health (53.5%), caregiver's routine (66.9%), taking responsibility (74.6%), and patient behavior (56.2%). These factors play an important role in increasing the burden of care on caregivers. Previous research has found that caregivers of people with schizophrenia endure a considerable and high level of care burden.[22],[23] Lasebikan and Ayinde[24] discovered that caregivers of chronic schizophrenia patients experience a variety of challenges, including worsening mental and physical health, financial issues, and everyday routine. Vasudeva et al.[25] caregivers with schizophrenia have a much higher burden in the areas of external assistance, caregiver routine, and other relationships.

The present study also found that caregivers of chronic patients with schizophrenia have 59.2% of stress, 56.2% of anxiety, and 48.5% of the severe level of depression. In addition, caregivers reported 13.8% of stress, 28.1% of anxiety, and 21.9% of depression on an extremely severe level. In some previous studies, stress, anxiety, and depression symptoms were found in 68%–98.67%, 32%–100%, and 29.4%–100% of caregivers of schizophrenia patients, respectively.[8],[16],[18] Ong et al.[26] reported that caregivers have been reported experiencing mild-to-great psychological distress in caring for patients with schizophrenia. Sharma et al.[16] revealed that caregivers face anxiety, sadness, loss, anger, despair, hopelessness, shame, guilt, tension and communication pressures, and disability in the care process.

Regression analysis in the present study shows that the overall family burden contributes 20.3% of the variance in stress, anxiety, and depression in caregivers. Some previous studies also suggested similar findings, Vadher et al.[23] reported that the burden of care is the strongest predictor of stress, anxiety, and depression in caregivers of schizophrenia. Kuchhal et al.[6] have found that family carers who report high levels of caregiver burden are more likely to experience anxiety and depression symptoms. Mitsonis et al.[11] found that caregivers experience increased psychological distress due to the burden of caregiving. Caqueo-Urízar et al.[10] reported these caregivers are suffering from emotional, physical, and financial difficulties, which leads to increased psychological distress. Raj et al.[27] reported that families who experienced a higher level of care burden had poorer functioning and health status, which were predictors of the carer's psychological distress. Furthermore, caregivers are overburdened with patient and family commitments, as well as caring responsibilities and constant concerns for their patients. As a result, people will withdraw from society and leisure activities, leading to lower quality of life.[28],[29],[30]

Limitations

The caregivers of patients with schizophrenia were selected from only OPD of the hospital who came in for a follow-up, and therefore the results cannot be generalized to the entire population. The DASS is the only screening tool. Only two scales were used in this study. There could have been more measures employed to gain a more comprehensive picture of psychological comorbidity among caregivers of schizophrenia patients.

Implications

The present findings of the study are helpful to understand the family care burden and its relationship to psychological distress (stress, anxiety, and depression) in caregivers of chronic patients with schizophrenia. Mental health professionals can help these caregivers with early assessment and proven interventions with positive effects on the burden. They can alleviate the stress of patient care while also protecting their own and their family's health. Family therapy and psychoeducation can be planned to reduce stress, anxiety, emotional problems, and behavioral symptoms as well as deal with the stigma of society.


  Conclusion Top


The present findings in our study have added to the growing evidence that chronic schizophrenia can have substantial effects on families, especially primary caregivers. This study suggests that caregivers of chronic patients with schizophrenia have a significant level of care burden and psychological distress. Caregivers caring for patients with schizophrenia particularly experience high care burdens and psychological comorbidity for their ill relatives. This study also demonstrates some of the important care burden variables which have got influence on a caregiver's psychological distress (stress, anxiety, and depression).

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4]



 

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