|Year : 2020 | Volume
| Issue : 3 | Page : 236-242
Brewing caregiver burden: Indian insights into alcohol use disorder
Kranti S Kadam, Vishnu B Unnithan, Mangesh R Mane, Amey Y Angane
Department of Psychiatry, Seth GSMC and KEMH, Mumbai, Maharashtra, India
|Date of Submission||26-Nov-2019|
|Date of Acceptance||13-Mar-2020|
|Date of Web Publication||28-Sep-2020|
Dr. Vishnu B Unnithan
Department of Psychiatry, Seth GSMC and KEMH, Acharya Donde Marg, Parel, Mumbai - 400 012, Maharashtra
Source of Support: None, Conflict of Interest: None
Introduction: Alcohol dependence is a growing problem in India. A substance dependent person in the family affects almost all aspects of family life. There is a surprising scarcity of studies on impact of alcohol dependence on caregivers. The study assessed the sociodemographic profile of primary caregivers of patients diagnosed with alcohol use disorder as per the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria by consultant psychiatrists and the severity of caregiver burden in them. The study further examined the association between various variables of sociodemographic factors, alcohol usage, and caregiver burden. Methodology: A cross-sectional observational study was carried out at a de-addiction center attached to a tertiary hospital in Mumbai. Primary caregivers of 80 patients were recruited for this study. Information was collected using structured questionnaire and caregiver burden scale. Sociodemographic profile and variables of alcohol usage were associated and correlated with caregiver burden using contingency tables and linear regression analysis. Results and Discussion: The prevalence of moderate-to-severe caregiver burden was obtained as 78.75% among the primary caregivers. There was a positive correlation between caregiver burden and the quantity of alcohol consumed, monthly alcohol expenditure, and years of marriage. The association between caregiver burden and various sociodemographic variables were not found to be statistically significant. Conclusions and Implications: There is the prevalence of moderate-to-severe caregiver burden among primary caregivers of patients of alcohol use disorder. Addressing the quantity of alcohol and expenditure incurred on alcohol consumption with focus on caregiver psychoeducation will have significant implications in the rehabilitation of patients with alcohol use disorder.
Keywords: Alcohol use disorder, caregiver burden, primary caregivers
|How to cite this article:|
Kadam KS, Unnithan VB, Mane MR, Angane AY. Brewing caregiver burden: Indian insights into alcohol use disorder. Indian J Soc Psychiatry 2020;36:236-42
|How to cite this URL:|
Kadam KS, Unnithan VB, Mane MR, Angane AY. Brewing caregiver burden: Indian insights into alcohol use disorder. Indian J Soc Psychiatry [serial online] 2020 [cited 2023 Feb 6];36:236-42. Available from: https://www.indjsp.org/text.asp?2020/36/3/236/296254
| Introduction|| |
Alcohol dependence is an omnipresent problem in a booming economy like India. As per the World Drug Report 2019, in 2017, an estimated 271 million people, or 5.5% of the global population aged 15–64, had used drugs in the previous year, whereas 35 million people are estimated to be suffering from drug use disorders. According to the National Mental Health Survey (NMHS), the prevalence of alcohol use disorders in males was 9% as against 0.5% in females. It is estimated that by 2050, in India alone, alcohol would cause the loss of 258 million life years by deaths, 552 million QALY due to consumption and a net economic loss of INR 97.9 lakh crores (1.45% of India's GDP).
Primary caregiver refers to a person typically over the age of 18 years, who provides care for another. It is generally one who gives assistance to another person who is no longer able to perform the critical tasks of personal or household care necessary for everyday survival. A substance dependent person in the family causes enormous burden on the caregivers., Substance dependence is considered as a “family disease.” The family plays a complex role in caregiving and managing consequences of addiction. It is accepted that the highest impact of any neurobehavioral disorder is often borne by the kith and kin, leading to the complete disruption in the functioning of a family as a vital cog in the social framework that makes up a community. Substance abuse-related family burden becomes, especially important in a culture like India where a joint household is the prevalent family pattern. The primary caregivers are increasingly stressed between caring for their relative with alcohol use disorder and trying to meet other responsibilities for their family or work. These responsibilities are exacerbated in a joint family set up. A high treatment gap has been observed in cases of alcohol addiction.
There are no interventional studies which study the effect of caregiver burden on the prognosis of the deaddiction process of the alcohol use disorder patient. All the studies only deal with the experience of caregiver burden. This study assumes greater relevance because of the very belated but much-needed emphasis on developing community mental health services under primary health care with focus on community participation.
Caregivers have been known to report significantly poorer quality of life than noncaregivers.
The families of patients of alcohol use disorder have increased burden of caring for such patients and feel responsible for their behavior. This leads to a sense of exhaustion, guilt, helplessness, and discomfort in caring for these patients. The spouses of such patients are at increased risk for various disorders due to this increased burden. Lack of caregiver support adversely affects the treatment outcome in patients undergoing deaddiction. There is a gap in the knowledge between the problems faced by caregivers in all spheres of life and variables of alcohol use disorder. Hence, this study focuses on caregiver burden in primary caregivers of alcohol-dependent individuals.
The study was aimed at assessing the sociodemographic profile of primary caregivers of patients diagnosed with alcohol use disorder as per the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM V) criteria and the severity of caregiver burden in them. The study further examined the association between various variables of sociodemographic factors, alcohol usage, and caregiver burden.
| Methodology|| |
Ethical clearance from the institutional ethics committee was sought for before the start of the study. Approval for the study was obtained from the Institutional Ethics Committee-1 of Seth G. S. Medical College, approval statement numbered IEC (I)/OUT/957/17 dated April 12, 2017. Written informed consent was obtained from all participants for consent to participate in the study and for publication of the results obtained after completion of the study. The consent was obtained in the language they best understood (English, Hindi or Marathi). Thumb impressions were taken of illiterate participants.
The study was conducted in the Department of Psychiatry and Deaddiction at a tertiary care center equipped to provide the diagnosis and treatment of various medical and psychiatric illnesses. It was conducted on outpatient department (OPD) days at the same time as patients came for their appointments. Primary caregivers aged 18–60 years of patients diagnosed with alcohol use disorder as per the DSM V criteria by consultant psychiatrists at the De-addiction Centre were recruited in the study. Primary caregivers of patients with substance use other than alcohol use disorder, patients having other comorbidities, and psychiatric disorders and those who refuse to give consent were excluded from the study. Eighty patients were taken by complete enumeration technique. Sociodemographic data were collected as per the case record form (CRF). The primary caregivers were administered caregiver burden scale to assess caregiver burden in them.
Case record form
Well-structured CRFs in the language best understood by the caregivers was used which included details of caregivers such as age, gender, level of education, occupation, family type, years of marriage (if married), and the socioeconomic class of the caregivers. Detailed history of alcohol use by the patient and its severity were also noted. Years of alcohol consumption, monthly expenditure on alcohol, the broad category of the type of alcohol consumed (whether country or branded), the daily quantity of alcohol consumed, any treatment taken for the same, whether the patient relapsed after the same and whether there was any attempt at abstinence due to religious reasons or other causes were noted.
Caregiver burden scale
The caregivers were administered a questionnaire in the language they were most comfortable with (English, Hindi, or Marathi as was their choice) to assess caregiver burden. The Caregiver Burden Scale is freely available in public domain. The Caregiver Burden Scale adapted from the Zarit Caregiver Burden Interview (ZBI) is a self-administered 22-item questionnaire that has been especially designed to reflect the stresses experienced by caregivers. Cronbach's alpha for the ZBI was 0.921. Caregivers are asked to respond to a series of 22 questions about the impact of the patient's disabilities on their life.
In the caregiver burden scale, caregivers are asked to respond to a series of 22 questions about the impact of the patient's disabilities on their life.
For each item, caregivers are to indicate how often they felt that way (never = 0, rarely = 1, sometimes = 2, quite frequently = 3, or nearly always = 4). The burden interview is scored by adding the numbered responses of the individual items. Higher scores indicate greater caregiver distress. As per the scale, these are: 0–20 no burden; 21–40 mild burden; 41–60 moderate burden and 61–88 severe burden.
The collected data were tabulated. The frequency distribution of sociodemographic data was made. The obtained caregiver burden were then analyzed with the tabulated sociodemographic data using contingency tables to assess for any significant results using Chi-square and Fischer's exact tests. Pearson's coefficient was also applied to correlate years of consumption, years of marriage, monthly expenditure on alcohol, and quantity of alcohol consumed with the caregiver burden. Linear regression models were obtained. The entire statistical analysis was carried out using GraphPad Prism software.
| Results|| |
A total of 104 patients were examined in the deaddiction OPD during the duration of the study. Twenty caregivers refused consent to take part in the study and remaining 84 patients were recruited into the study. Four caregivers refused to divulge complete sociodemographic details despite the understanding that anonymity would be maintained due to the stigma associated with alcoholism and subsequently, 80 completed CRFs were obtained by the authors. These 80 eligible caregivers were subsequently administered the caregiver burden scale [Table 1].
All the patients of alcohol use disorder were adult males. Country liquor was consumed by 80% patients, whereas 20% of caregivers acknowledged that their patients indulged in branded imported liquors [Table 2].
About 32.5% of patients spent up to Rs. 3000 on their monthly alcohol expenditure (for an average of Rs. 100 every day) 50% stated that they spent between Rs. 3000 and Rs. 6000 per month on alcohol, while the rest 17.5% spent more than that. About 40% drank up to 180 ml of alcohol per day (1 quarter), 36.25% drank between 180 and 360 ml (1–2 quarters) per day, while the rest 23.75% drank more than two quarters. About 35% of patients had been consuming alcohol for 10 years, 42.5% for 10–20 years, and 22.5% for more than 20 years.
About 7.5% of patients belonged to lower socioeconomic class, 30% each (total of 60%) to upper lower and lower middle class, 31.25% to upper middle, whereas 1 patient belonged to upper class (1.25%). About 36.25% of patients had been consuming alcohol for <10 years, 41.25% for 10–20 years, and 22.5% for periods longer than that [Table 3].
|Table 3: Caregiver burden with alcohol-related variables and sociodemographic profile: Patients|
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In cases where the patient had a spousal caregiver (n = 57), they had been married for 16.05 years on an average (standard deviation [SD] = 7.56).
There were 12.5% of males (n = 10) and 87.5% of female caregivers who made up the population of 80 respondents. About 81.43% of the 70 female caregivers had their spouses as the patients diagnosed with alcohol use disorder. Among the 80 caregivers, there were 71.25% of spousal caregivers (n = 57), 13.75% of parents (n = 11), 11.25% of siblings (n = 9), and 3.75% children (n = 3). The mean age of caregivers was 41.36 (SD = 12.30). The mean caregiver burden was found to be 54.44 (SD = 17.34) indicating moderate burden [Table 4].
The mean age of spousal caregivers was found to be 39.19 (SD = 8.39). The mean caregiver burden among them was found to be 53.46 (SD = 16.65). Among the 57 females performing caregiving for their spouses, 28.07% had been married for <10 years and 24.56% had been married for >20 years, while the rest 47.37% had been married for 10–20 years.
The caregivers sampled included 11.25% unskilled laborers, 12.5% semiskilled, 11.25% skilled, 6.25% clerical, and 7.5% semi-professional workers as per Kuppuswamy's classification. The remaining 51.25% of the caregivers surveyed were housewives.
Among the 80 caregivers, 5% were postgraduates, 8.75% graduates, 12.5% had studied up to higher secondary (12th std.), 35% till secondary, 25% up to primary, and 13.75% were illiterates.
The prevalence of moderate-to-severe caregiver burden was obtained as 78.75% among the primary caregivers. About 16.25% reported mild burden, while 5% of cases reported little or no caregiver burden.
The Fischer's exact square and Chi-square test analysis for contingency tables drawn up for the sociodemographic data with the caregiver burden did not yield any significant results with caregiver age, employment status, educational qualifications, or socioeconomic class of the affected family.
Statistically significant associations [Table 5] of caregiver burden with the quantity of alcohol [Figure 1] consumed (P = 0.0008), monthly alcohol expenditure (P = 0.0117) [Figure 2], and years of marriage (P = 0.0005) were obtained [Figure 3].
|Table 5: Associations of caregiver burden with variables of alcohol use disorder|
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|Figure 1: Linear regression graph showing correlation between quantity of alcohol consumed and caregiver burden|
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|Figure 2: Linear regression graph showing correlation between monthly expenditure on alcohol and caregiver burden|
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|Figure 3: Linear regression graph showing correlation between years of marriage and caregiver burden|
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| Discussion|| |
All the patients of alcohol use disorder were males. This is consistent with the finding from NMHS that males were 18 times more likely than females to drink alcohol.
Six (7.5%) patients belonged to lower class, 24 (30%) each to upper lower and lower middle class, 25 (31.25%) to upper middle class and 1 (1.25%) to upper class. While there were patients belonging to all socioeconomic classes, 54 (67.5%) of patients belonged to the lower 3 socioeconomic classes. This finding was similar to a study conducted by Kadri et al. The sociodemographic profile obtained in this study emphasizes the fact that alcohol use is not a disorder affecting an isolated few but its patients come from all types of families with various socioeconomic standings and educational qualifications irrespective of their earning potential. There was only a solitary case of an upper class patient in our study sample and no professionals, these can be attributed to the fact that the hospital is a public hospital and is not often frequented by people with higher means.
Majority of the caregivers were female. Indian traditions have demarcated females as the predominant caregivers of any family and a similar trend was seen among the caregivers interviewed by us. The sample of caregivers interviewed was quite similar to studies conducted in Ranchi and Chennai, both in India., A similar pattern of higher number of female caregivers was also seen in a Western study.
The findings of the current study indicate a 95% prevalence of caregiver burden with 43.75% severe, 35% moderate, and 16.25% mild burden in caregivers of patients with alcohol use disorder. This is identical to the finding of 95%–100% caregiver burden seen in a study by Mattoo et al. The prevalence was lower than the finding of more than three-quarters of the sample experiencing severe burden in a study conducted by Shareef et al. Studies conducted by Shekhawat et al., Vaishnavi et al., and Swapna et al. showed lower caregiver burden. Even in a western study conducted by Sattar et al., the finding of significantly higher caregiver burden was noted. This higher burden leads to significantly poorer quality of lives in caregivers of these patients, echoed in the findings of a study conducted by Jiang et al.
The higher burden is due to the direct effects of alcohol consumption of the patient and the added responsibilities that the caregiver needs to take on in light of the patient's behavior as recorded on the caregiver burden scale. These include helping the patient leading to feelings of discomfort, anger, strain, embarrassment, sense of the loss of privacy and social life. The caregivers subsequently reported on the caregiver burden scale that they cannot take care of their patients much longer, are afraid of the future and feel a sense of loss of control over life. The cost of treatment, the monthly alcohol expenditure by the patient, and additional income which may be lost due to the caregiver too investing his resources in the patient are all additional sources of burden to the caregiver as well as the society and nations at large, something which has been quantified in studies conducted by Rice et al. and Salize et al. monetarily and Jiang et al. in terms of time.
There was a weak positive correlation between the quantity of alcohol consumed and caregiver burden (P = 0.0008) This was in keeping with the finding of heavy drinking days leading to the caregiver experiencing more burden in a study by Hoertel et al. This accounts for the larger monthly expenditure which also led to a finding of enhanced caregiver burden (P = 0.0117). It is evident that increased consumption and spending on alcohol leads to an enhanced perception of burden by the caregivers.
There was a moderate positive correlation between the years of marriage and caregiver burden (P = 0.0005). While in the initial stages, the spouse may try to adjust, indulge, or hope for positive change in view of her mindset groomed by cultural traditions, in later years, when the progeny is adversely affected as evidenced in a study by Hebbani et al., her coping skills are severely put to test leading to rising caregiver burden.
Unlike previous studies which found a relation between low socioeconomic class, unskilled, uneducated and poorly earning men, and drinking,, the associations found by our study between the socioeconomic class, income, education, and professional qualification of the caregiver and the burden experienced were statistically insignificant. This reinforces the fact discussed in this article that alcohol use disorder is not an isolated problem of the select few but a national health menace.
This article differs from previous work in the analysis of caregiver burden and alcohol use. Unlike previous work in this field, this study did not focus on one subset of caregivers (e.g., parental caregivers). Alcohol use being a disorder not isolated to a specific category of the population and caregiving being provided by different relatives in different contexts, all primary caregivers were included in our study. This was considered to be appropriate as the study attempted to find patterns in the caregiving experience and the correlation between that experience and variables of alcohol use and sociodemographic factors. The caregiving experience by itself is altered by many factors. Thus, it becomes an impossible task to define this subjective experience simply by the characteristics of the care recipient. Subsequently, an entire cross-section of caregivers was enrolled in this study.
The study being a cross-sectional study, no interventions were carried out and the causal relationship could not be established. The study also did not account for whether any preexisting psychiatric morbidity among the caregivers had any effect on the burden perceived as well as on the treatment of the patient. The study emphasizes the need for interventional longitudinal national level studies which would allow for the wider generalizability of conclusions through the adoption of both qualitative and quantitative methods.
| Conclusions|| |
Summary and implications
There is a very high prevalence of caregiver burden among primary caregivers of patients with alcohol use disorder. There was a positive correlation between the quantity of alcohol consumed and caregiver burden as well as between the caregiver burden and monthly expenditure on alcohol. There is a high treatment gap stemming from a lack of awareness about the availability of systematic deaddiction regimes among patients of alcohol use disorder. This results in patients not getting adequate and comprehensive treatment, leading to increased consumption of alcohol and consequently higher caregiver burden. This train of events leads to the development of a vicious cycle which casts a net ensnaring both the patients and their primary caregivers from which they increasingly find it difficult to escape. The associations found by our study between the socioeconomic class, income, education, and professional qualification of the caregiver and the burden experienced were statistically insignificant, implying that alcohol use disorder and caregiver burden does not discriminate among its patients and is a universal problem requiring immediate permanent solutions, the foundation toward which has been provided by our study.
Current guidelines dictate deaddiction protocol for patients of alcohol use disorder. However, steps for reducing caregiver burden by treatment interventions should also be developed in comprehensive programs, which currently seem limited. Measures to create awareness among the general populace are necessary for the early identification and treatment of alcohol use disorder. Primary caregivers experience burden due to this behavior and special separate support groups for primary caregivers of such patients needs to be developed where counseling and caregiver psychoeducation can be holistically performed. Communication between the psychiatrist and primary caregiver should increase to better manage the patient.
We would like to thank Dr. Ajita Nayak, Head of Department, Department of Psychiatry, Seth GSMC and KEM Hospital.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]