Burden of care in caregivers of patients with alcohol use disorder and schizophrenia and its association with anxiety, depression and quality of life

Statistical analysis

Qualitative data are expressed as percentages, while quantitative data are expressed as mean (SD). Proportions of participants were compared using the χ² test. The Kolmogorov-Smirnov normality test was applied. Scores on HADS, ZBI and WHOQOL-BREF scales that followed normality test were compared using Student’s two-tailed t-test, while scores that did not follow normality test were compared using Mann-Whitney test. Statistical analysis was done using GraphPad InStat V.3.06 (San Diego, California, USA). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Here, the ZBI score was taken as the outcome variable, and the anxiety and depression subscale scores of HADS, domain scores of WHOQOL-BREF and the demographic variables as predictor variables. A p value ≤0.05 was considered statistically significant.

Demographic characteristics

The demographic characteristics of caregivers and patients with schizophrenia and AUD are shown in table 1.

The mean duration of illness was longer in patients with AUD than in patients with schizophrenia, while the mean duration of treatment was longer in patients with schizophrenia than in patients with AUD. Hence, these two variables were not comparable.

Few caregivers of patients with AUD and schizophrenia suffered from adjustment disorder or anxiety disorder.

Level of burden of care and its association with other variables

Table 2 shows that caregivers of individuals with AUD with high burden of care are likely to have higher scores in the depression subscale (U=48, p<0.001) and anxiety subscale (U=36, p<0.001) of HADS, and lower scores in the physical health domain (U=129.5, p=0.002), psychological health domain (U=104, p<0.001), social relationships domain (U=141, p=0.004) and environmental health domain (U=88, p<0.001). Caregivers of individuals with schizophrenia with high burden of care are likely to have higher scores in the depression subscale (U=32, p<0.001) and anxiety subscale (U=22, p<0.001) of HADS, and lower scores in the physical health domain (U=84.5, p<0.001), psychological health domain (U=68.5, p<0.001), social relationships domain (U=115, p<0.001) and environmental health domain (U=45.5, p<0.001).

Comparison of variables between schizophrenia and AUD

As shown in table 3, there was no statistical difference in scores on ZBI (U=1142.5, p=0.46), depression (U=973, p=0.056) and anxiety (U=1087, p=0.26) subscales of HADS, and all domains of WHOQOL-BREF between caregivers of patients with schizophrenia and AUD.

Effect of gender on burden of care and other variables

Table 4 shows that female caregivers of patients with AUD are likely to have higher scores on the ZBI scale (t=2.42, p=0.01) and on the anxiety subscale of HADS (t=2.52, p=0.01), and lower scores on the physical health domain (t=3.21, p=0.002), psychological health domain (t=3.44, p=0.001), social relationships domain (U=128, p=0.04) and environmental health domain (t=4.43, p<0.001). Female caregivers of patients with schizophrenia are likely to have higher scores on the ZBI (U=198.5, p=0.04) and the anxiety subscale of HADS (U=183, p=0.02), and lower scores on the environmental health domain (t=2.16, p=0.03).

Predictors of burden of care

Linear regression analysis was applied to identify the predictors of burden of care using the stepwise technique. All predictors found to be significant in the univariate analysis were then entered into the multivariate analysis. In the present model, ZBI score was considered as the outcome variable.

The multiple regression model for caregivers of individuals with AUD with all predictors produced an adjusted R²=0.784, which stipulates that 78.4% variance in the outcome variable can be explained by the predictors. This model was also significant in prediction (F(2, 48)=90.023, p<0.001). Similarly, the multiple regression model for caregivers of individuals with schizophrenia with all predictors produced an adjusted R²=0.757, which stipulates that 75.7% variance in the outcome variable can be explained by the predictors. This model was significant in the prediction (F(4, 46)=39.151, p<0.001).

For the ZBI score of caregivers of patients with AUD, after two-step linear regression model, depression score on HADS (B=2.780, p<0.001) and environmental health domain score on WHOQOL-BREF (B=−0.224, p=0.008) were found to be significant predictors of burden of care (table 5). For the ZBI score of caregivers of patients with schizophrenia, after four-step linear regression model, anxiety score on HADS (B=2.032, p<0.001), environmental health domain score on WHOQOL-BREF (B=−0.326, p=0.003), socioeconomic status of caregiver (B=0.001, p=0.022) and patients’ occupation (B=−9.009, p=0.024) were found to be significant predictors of burden of care (table 5).

As can be seen in table 5, scores on the depression subscale of HADS had positive weightage, so caregivers of individuals with AUD with higher scores on this scale are expected to have higher ZBI score, while scores on the environmental health domain of WHOQOL-BREF had negative weightage in the model, so caregivers of individuals with AUD with low scores on the environmental health domain are expected to have higher ZBI score. Similarly, anxiety score on HADS and the socioeconomic status of caregivers of individuals with schizophrenia had significant positive regression weightage, stipulating that caregivers of individuals with schizophrenia with higher scores on the anxiety subscale of HADS and caregivers of individuals with schizophrenia with higher socioeconomic status are expected to have higher ZBI score. The environmental health domain score of WHOQOL-BREF and patients’ occupation had a significant negative weightage, indicating that caregivers of individuals with schizophrenia with lower scores on the environmental health domain and with unemployed patients are expected to have higher ZBI score.

Depression score on HADS is the strongest predictor of burden of care in caregivers of individuals with AUD (table 5), while unemployed patient with schizophrenia is the strongest predictor of burden of care in caregivers, as can be seen in table 5.

• Working model to predict ZBI score for caregivers of individuals with AUD and its application to the next caregiver is as follows:

  ZBI score=23.238 + 2.780 (depression score) – 0.224 (environmental health domain score).

• Working model to predict ZBI score for caregivers of individuals with schizophrenia and its application to the next caregiver is as follows:

  ZBI score=48.159 + 2.032 (anxiety score) – 0.326 (environmental health domain score) + 0.001 (socioeconomic status) – 9.009 (patient’s occupation).

Main findings

Our results suggest that caregivers of patients with schizophrenia are likely to experience a significant burden of care. Schizophrenia is a chronic illness, which might hamper the insight of an individual to a great extent. The burden of care in caregivers of patients suffering from schizophrenia may be attributed to the above factors at large. However, several other factors that play an important role in increasing the burden of care include taking care of the patient’s grooming, hygiene, daily needs, medications, and dealing with exacerbation and relapse of illness. This can make the caregiver feel burdened. These findings were corroborated by other studies.18–20

As can be seen in tables 2 and 5, caregivers of patients with schizophrenia with higher burden of care are likely to have depression, anxiety and poor quality of life. Also burden of care in caregivers can be predicted by anxiety and environmental quality of life. This can be because the burden of caring affects caregivers’ ability to cope with illness. Longer duration of illness and caregiving become chronic stressors for caregivers. Social isolation may follow, leading to increased stress and making them vulnerable to depression and anxiety. Moreover, caregivers are flooded with patient and family responsibilities and are burdened with caregiving duties and persistent worries about their patients. This will result in withdrawal from the society and leisure activities, leading to poor quality of life. Similar results were found in previous studies.12 13 21

Table 5 suggests that burden of care in caregivers of patients with schizophrenia can be predicted by the employment status of the patient. A possible explanation for this can be that owing to unemployment, patients and caregivers are forced into a life of penury. They spend more time at home and so caregivers are burdened with caregiving tasks, in comparison with patients who are employed where caregivers get more time of rest and relief while patients are away for work. Monetary scarcity further increases the burden. Our findings were substantiated in earlier studies.4 21–23

Our results show that caregivers of patients with AUD are likely to experience significant burden of care. Repeated quarrels, verbal and physical abuse by the person with AUD, and seclusion of caregivers from other family members and society significantly impact their physical and mental health. These can lead to increased burden in caregivers of patients with AUD. Other studies also showed similar results.24 25

Caregivers of patients with AUD with higher burden of care are likely to have depression and anxiety, and burden of care can be predicted by anxiety (tables 2 and 5). This can be explained on the basis that health-related issues among caregivers themselves, violence committed by the patients, financial crisis, shame and stigma from the society towards alcoholics can lead to depression and anxiety in caregivers. These findings were confirmed in other studies.10 26

Our study suggests that caregivers of patients with AUD are likely to have poor quality of life and that burden of care can be predicted by the environmental domain of quality of life (tables 2 and 5). This can be explained by the fact that AUD in one family member, especially when he/she is the sole breadwinner, may cause myriad problems for the caregivers. Some of these are occupational dysfunction, premature and compulsory retreat from jobs, solitude, changes in responsibilities, disruption of routine and social activities, and financial burden. All these can lead to poor quality of life among caregivers. Similar results were found in other studies.7 27

The results of our study show that there was no statistical difference in the burden of care experienced by caregivers of patients with schizophrenia and AUD (table 3). Caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Other studies supported our results.28 29

As can be seen in table 4, female caregivers have higher caregiver burden and anxiety and poor quality of life. This might be due to female caregivers differing in their appraisal and in coping with stressors, and the lack of social support framework that caters to their needs. The sociocultural expectations imposed on them to adopt a caregiving role despite their difficulties add fuel to the fire.4 22 23 Contradictory results were found in a few studies, where male caregivers experienced significant burden of care than female caregivers.28 30

Limitations

Although we have used validated scales of assessment, our study has some limitations, such as its small sample size, being a hospital-based study, participant recruitment from a single centre and being a cross-sectional study, cause-effect relationship cannot be established. The mean duration of illness and the mean duration of treatment were not adjusted in the univariate analysis. We have not taken into consideration the supporting network that our patients and their caregivers might have, which may influence burden of care. Further multicentric cohort studies with large sample size are required to obtain further insights into this subject.

Implications

Psychological problems of caregivers of patients with mental illness are not given enough attention or are ignored. There is a strong need to give proper attention towards caregivers’ mental well-being to prevent mental illness and to identify early those who are at risk.