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|Year : 2019
: 61 | Issue : 2 | Page
|Study of family burden in substance dependence: A tertiary care hospital-based study
Anita Sharma1, Arvind Sharma2, Sanjay Gupta3, Satish Thapar2
1 Department of Psychiatry, All India Institute of Medical Sciences, Rishikesh, Uttarakhand, India
2 Department of Psychiatry, Guru Gobind Singh Medical College, Faridkot, Punjab, India
3 Department of Community Medicine, Guru Gobind Singh Medical College, Faridkot, Punjab, India
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|Date of Web Publication||11-Mar-2019|
| Abstract|| |
Background: A substance-dependent person affects almost all aspects of family life, for example, interpersonal and social relationships, leisure time activities, and finances. Substance dependence invariably increases conflicts, negatively affects family members, and burdens the families.
Aims and Objectives: To assess family burden perceived by primary caretakers (PCTs) of individuals with substance dependence and relevant clinico-socio-demographic profile of individuals as well as PCTs.
Materials and Methods: Individuals and primary caretakers (n = 150) attending psychiatry OPD and emergency were included in the study. Individuals were selected by convenient sampling. The individuals and PCTs were administered psychiatric thesis/interview pro forma and drug abuse schedule. PCTs were administered “family burden interview schedule.”
Results: Majority of caretakers had moderate objective burden (65.3%) and severe subjective burden (74%). Objective burden was more in areas of “financial burden” and “disruption of routine activities.” Objective burden had correlation (P < 0.05) with monthly family income, monthly expenses on substance, number and type of substances, treatment history, sex and type of caretaker. Subjective burden was dependent on sex and type of caretaker and treatment history of the patient.
Conclusion: Our study concluded that substance dependence is associated with substantial burden for family members, more for subjective and objective burden in families with low income and with patients who are dependent on more number of substances and had taken treatment in the past. Higher proportion of severe burden was reported by female caretakers. These findings suggest directions for future research in this area.
Keywords: Caretaker burden, family burden, financial burden, substance dependence
|How to cite this article:|
Sharma A, Sharma A, Gupta S, Thapar S. Study of family burden in substance dependence: A tertiary care hospital-based study. Indian J Psychiatry 2019;61:131-8
| Introduction|| |
Substance abuse/dependence causes significant harm to self, family, and society as a whole. Some of the harms are directly caused by substance used while others are due to the associated behavioral patterns, whose manifestation depends on the complex substance-individual-society interaction. For the research purpose, burden has been operationally defined as “effects of subject upon family” on various areas, namely financial, family routine, family leisure, family interaction, and physical and mental health of others.
The burden on families on account of substance abuse by a family member has begun to come into focus since the 1990s. Hoenig and Hamilton in 1966 attempted to distinguish between objective and subjective burden. The former includes the effects of the illness on finances and routine of the family while the latter is defined as the extent to which family members are affected by objective burden.
It is estimated that a total of 246 million people, or 1 out of 20 people between the ages of 15 and 64 years, used an illicit drug in 2013. That represents an increase of 3 million over the previous year. The magnitude of the world drug problem becomes more apparent when considering that more than 1 out of 10 drug users is a problem drug user, suffering from drug use disorders or drug dependence. There is no quick and simple remedy for drug dependence. It is a chronic health condition, and as with other chronic conditions, the affected persons remain vulnerable for a lifetime and require long-term and continued treatment.
In a survey of 4 villages in Punjab, it was found that 78.28% of the population used alcohol. In an epidemiological survey on 2992 people to estimate the prevalence of alcohol and drug dependence in rural and slum population of Chandigarh, 6.88% individuals fulfilled dependence criteria of International Classification of Diseases 10th Revision (ICD-10). Alcohol was the primary substance of dependence for the majority of urban slum and rural areas. Alcohol and drugs affected almost all areas of life including health (85.71%), family (77.31%), marital status (70.59), and occupational status (64.28%). According to the survey conducted by Punjab Government, every 3rd male student in Punjab is hooked to substance abuse. It was revealed that consumption of opiates in Punjab is 3 times the national average reported. In the state of Punjab, the problem of drug abuse has reached to an epidemic state.
A substance-dependent person in the family affects almost all aspects of family life, for example, interpersonal and social relationships, leisure time activities, and finances. Substance dependence invariably increases conflicts, negatively affects family members, and burdens the families.
The financial burden, one of the major burden areas, is likely to be experienced by the families due to loss of patient's income and use up of funds to procure substances they are dependent on. Indirect losses also include losses due to premature death of addict either due to natural course of disease, trauma, or suicide by addict lead to additional burden on the family.
Even though an individual is hospitalized due to a road crash, his/her family suffers equally on many aspects including social (taking care, absence from routine social interactions, change in social status, etc.), economic (loss of pay, increased expenses – direct and indirect, costs of canceled/postponed events, etc.), and psychological aspects (low self-confidence and increased distress levels). Alcohol has been incriminated as a major risk factor in the occurrence of suicides. Alcohol consumption was a major risk factor with chances of suicides increasing by nearly 25 times, among users. Spousal alcohol abuse accounted for an increase in suicides by nearly six times among women.
Within the family, it is often the woman, in the role of wife or mother who is most affected by the individual's substance use, and has to bear a significant part of the family burden. Such impact becomes even more obvious in a developing country like India, where women are already disadvantaged. It was concluded that the greatest burden was economic followed by stigmatization, emotional and relationship difficulties, and neglect of children. Domestic violence, crime, increased trafficking, and risk of HIV were recognized as possible outcomes of individual drug use. One of the major burdens the women faced was the burden of blame – blame for the drug use in the family member, blame for hiding the issue from others, and blame for not getting timely treatment. Thus, the woman often became the victim of not just the drug abuser but also the society. Drug abuse magnifies violence within marital relationships. Most women suffer abuse silently, responding with humiliation, frustration, helplessness, and suicidal thoughts. Shame and embarrassment caused many women to build “A wall of silence” around her, thus increasing isolation and helplessness in the situation.
Living with an alcoholic is a family affair. Because it subjects all members of a household to constant stress and fears of various kinds; it has often been referred to as a “family illness.”
Family members are concerned about the substance abuse behavior of the individual, but they also have their own problems. At times, complementary or mirroring problems may crystallize the relationship into a codependent dimension, where the “non-ill” member becomes overly concerned with the difficulties of the other and renounces to his/her own wants and needs. Of course, this concept can lead to the risk of pathologizing otherwise normal caring functions, particularly those that have to do with empathy and self-sacrifice. In a potentially highly unstable “role play,” members often must change their conventional family roles or add new, often-inappropriate functions to adapt to the unpredictable, unreliable and sometimes demanding behavior of the substance abuser. The individual typically engages with searching or using substances most of the time and is often incapacitated by the effects of alcohol or drugs, which leaves him/her unable to fulfill any responsibility in the family. Vacant roles may be redistributed and some family members, especially children, might have to bear excessive responsibilities. To further complicate the picture, caregivers or other burdened members of the family often do not know how to ask for help or refuse to do so because of shame and fear of social stigma.
Psychiatric research on caregiving has increasingly recognized the price paid by families of individuals with mental health problems and their contribution to the care process. However, the analysis has traditionally been limited to relatives of individuals with mental disorders such as schizophrenia, bipolar disease, or dementia, and investigations on drug and alcohol use have been slowly following the path. The delay is perhaps due to a difficult progression from focusing on the role of the family in generating or exacerbating the drug user's problems, through identifying family members as recipients of care, to learning what they can offer to the management of addiction.
A study from Nepal assessed family burden in 30 subjects, each with intravenous drug use and alcohol dependence, using Family Burden Interview Schedule (FBIS). Among all PCTs, 73.3% had perceived severe burden. In contrast to 46.7% of PCTs of the ADS, 66.7% of PCTs of the injection drug users (IDUs) reported severe burden. Burden on all the problem areas was less on the spouse as compared to others. These findings in the study itself signify that spouse may be more forbearing to the burden than the other family members.
An earlier study from India compared families of 30 individuals each with alcohol dependence, opioid dependence, and schizophrenia. The burden was assessed by the FBIS. Moderately severe objective, subjective, and different domain burden were reported for alcohol dependence, opioid dependence, and schizophrenia groups. Another cross-sectional, hospital-based study in India assessed the burden on the spouses of 50 patients with opioid addiction. About 56.0% of them perceived severe objective burden whereas 74.0% of spouses perceived severe subjective burden, which is higher than burden consequent to chronic psychiatric and physical illness.
In a study involving 83 PCTs of patients with substance dependence conducted to assess the impact of substance dependence on primary caretaker (PCT) and factors affecting it, in rural area of Punjab, using Family Burden Interview Schedule, majority of PCTs (77.5%) were found to have moderate burden especially in financial areas, disruption of routine activities, family leisure, and family interaction. Higher proportion of burden was seen in PCT of illiterate patients of reproductive age group, of lower socioeconomic status, having multiple and longer duration of substance dependence, and had relapsed many times. Burden on PCT was observed more in temporal association to the number of substance, type, and duration of dependence.
When family burden is concerned, most of the studies have examined the family as an etiological entity, where family process has typically been studied to examine the effect of the family on the individual's substance habit. There is a dearth of comprehensive study on family burden resulting from substance use. This study will be conducted to estimate the level of the burden on family members of substance-dependent individuals since they form pivot in the integrative management of these patients. As such, there is very limited data from India on this subject and this study would be an endeavor in the current scientific research.
Aims and objectives
To assess the family burden perceived by PCTs of individuals with substance dependence and to study the relevant clinico-socio-demographic profile of individuals as well as PCTs.
| Materials and Methods|| |
The present study was a descriptive, cross-sectional, tertiary care hospital-based study, conducted at the Drug De-addiction and Treatment Centre, Department of Psychiatry, Guru Gobind Singh Medical College, Faridkot including 150 substance-dependent individuals and their 150 PCTs. The study had the approval of the institutional research ethics committee. The data collection was done from March 1, 2013 to August 30, 2014. Individuals were recruited from psychiatry OPD and emergency department by nonrandomized convenient sampling. A written informed consent was obtained from both the patients and the caregivers included in the study.
PCT is the family member most directly linked to the care and/or emotionally to person dependent on substance. The family members accompanying the patients were included in the study if they were living together with the patients and were involved in their care indirectly in terms of general life care and directly in terms of his substance dependence and its treatment-related assistance or supervision for >1 year. The >1 year cutoff for caring was taken for the sake of comparability as majority of studies from India have used this cutoff.,,,
Individuals in the age range of 18–65 years with diagnosis of substance dependence syndrome according to ICD-10 were included. Healthy primary caretakers (PCTs) of patients, aged >18 years, of either gender, and healthy by general clinical assessment were included in the study. The patients and caregivers with major chronic psychiatric illness – organic psychosis, schizophrenia, mental retardation, persons with other long-term/serious medical or surgical illness, and who refused to give informed consent were excluded from the study. The individuals and their primary caretakers (PCTs) were interviewed in a one-to-one situation based on psychiatric thesis/interview pro forma, and drug abuse schedule was administered to the individuals to elicit the drugs used, quantity and frequency of drug usage, age at onset, duration, reason for starting, attitude to drug taking, and withdrawal effects.
PCTs were administered “family burden interview schedule” for the assessment of burden. It is a semistructured interview schedule developed by Pai and Kapur and was used by Chakrabarti and Kulhara at PGIMER Chandigarh to assess family burden of neurosis. The pro forma was translated in the vernacular language (Punjabi). The FBIS measures both objective burden and subjective burden on the family members. It has 24 items grouped under 6 areas of burden, namely (1) financial burden, (2) disruption of routine family activities, (3) disruption of family leisure, (4) disruption of family interactions, (5) effect on physical health of others, and (6) effect on mental health of others. Each item is rated on a 3-point scale – zero indicating no burden, one indicating moderate, and two indicating severe burden. Inter-rater reliability for all items is 0.78, and the correlational validity is 0.72. It has a standard question (How much would you say you have suffered owing to the patient's illness – severely, a little, or not at all?) to assess subjective burden which is also on a 3-point scale. Objective burden is the total score. The total score range of scale is 0–48.0 score means no burden, 1–24 means moderate burden, and 25–48 means severe burden. The scale has been widely used in India with the families of patients with mental retardation, chronic physical, alcohol use, and schizophrenic, affective, and neurotic disorders.,,,
The data were subjected to statistical evaluation using Epi Info software (Atlanta, GA, USA). Descriptive data were analyzed by percentage, mean, and standard deviation. To test the association between variable and burden, Chi-square test was used. P values were determined from Chi-square test and P < 0.05 was considered as statistically significant. To represent the data, both tables and bar diagram/pie charts were used.
| Results|| |
All patients were male. Majority of the patients (56.7%) belonged to age group 18–30 years [Table 1]. Maximum numbers of the patients (30.7%) were educated up to higher secondary. Maximum of them (29.3%) were farmers. Most of the patients (62.7%) were married. Majority of the patients (60.7%) were from rural background. Majority of the patients (83.3%) belong to Sikh religion. Maximum numbers of patients (86.7%) were living in joint families. Maximum patients (52.7%) were having family income between Rs. 20,000 and 40,000 per month. On an average, 44.7% patients were spending up to Rs. 15,000 per month on substance although the amount spent on substance per month varies with the type of substance being used.
Majority (87.3%) of patients were dependent on more than one class of substances. Among the patients with single substance dependence, maximum had opioid dependence (57.9%) followed by alcohol dependence (42.1%) [Table 2]. Among the total 150 patients, 125 (83.3%) used opioids singly or in combination. Among these 125, majority (52.8%) had heroin dependence followed by 31.2% had natural opium/poppy husk dependence and 16% had dependence of capsules/tablets and syrups. Among the patients with two substance dependence, opioid and tobacco combination was the most common (66.7%). Among three substance dependence, maximum (71.8%) had opioid + alcohol + tobacco combination. Among four substance dependence, 75% had opioid + alcohol + sedative + tobacco combination. Majority of patients, i.e., 49.3% had duration of dependence <5 years. Majority (73.3%) had taken treatment in the past for substance dependence.
Maximum number of the caretakers (34%) were of the age group 42–54 years with mean age 45.85 ± 12.92; majority (68%) of caretakers were females and only 32% of the caretakers were males [Table 3]. In our study, 77.3% caretakers were literate and 22.7% caretakers were illiterate. Majority (61.3%) of caretakers were homemakers, followed by 15.3% were farmers and only 1 (0.7%) caretaker was unemployed. Our study revealed that maximum 53 (35.3%) of the caretakers were mothers followed by 49 (32.7%) were wives, followed by 38 (25.3%) were fathers and 10 (6.7%) were other relatives.
Out of 150 caretakers, 98 (65.3%) had moderate objective burden and 52 (34.7%) had severe objective burden [Table 4]. Whereas 111 (74%) had severe subjective burden and only 39 (26%) had moderate subjective burden. In subjective burden category, we found severe burden more common than moderate (74% vs. 26%). Our finding revealed 34.7% of caretakers perceived “objective burden” as severe which was less than subjective burden (74.0%). Our study revealed the overall mean score in total objective burden – 20.55 ± 6.39. Mean score in “financial burden” category was 6.07 ± 2.18 [Table 5]. Mean score in category “disruption of routine activities” was 5.64 ± 2.17 whereas in category “disruption of family leisure,” mean score was 3.30 ± 1.65. Mean score in category “disruption of family interaction” was 3.44 ± 1.27. The mean score was 0.19 ± 0.48 in “physical health” category and was 1.84 ± 0.82 in the “mental health” category. Mean score of subjective burden was 1.74 ± 0.44.
Correlation of burden with sociodemographic profile of individuals and caretakers and clinical profile of individuals
Objective burden had correlation with monthly family income, monthly expenses on substance, number of substances, type of substances, treatment history, sex and type of caretaker whereas subjective burden was dependent on sex and type of caretaker and treatment history of the patient. The family burden was associated neither with age, education, occupation, marital status, or duration of dependence of the patients nor with family type, background, caregiver's age, education, or occupation.
Severe objective burden was seen in families with low monthly income and higher monthly expenses on substances. Higher proportion of severe objective burden (53.8%) was seen in families with income Rs. 20,000–40,000 per month and 86.6% of severe burden was seen in families of patients with Rs. 15000 and above monthly expenditure on substance.
Objective burden was also associated with number of substances and type of substances and past treatment. Caretakers of patients with more than one class of substance dependence reported severe objective burden (94.1% vs. 5.8%). Among the severe objective burden group, 25% had four substance dependence and only 5.8% had single substance dependence. Among the single substance dependence, higher proportion of severe objective burden (5.8%) and severe subjective burden (6.3%) was seen in families of opioid-dependent patients than alcohol dependence. Among two substance dependence, opioid and tobacco dependence constituted higher proportion of severe objective (36.5%) and severe subjective burden (32.4%). Among three and four substance dependence, opioid + alcohol + tobacco combination and opioid + alcohol + sedative + tobacco combination constituted higher proportion of severe burden. Our study also revealed that higher proportion of severe objective burden (84.6%) and severe subjective burden (81.1%) were seen in the families of the patients who had already taken treatment for substance dependence.
Across the severe burden categories, objective and subjective, female caretakers outnumbered males, 80.8% vs. 19.2% and 73% vs 27%, respectively. Mothers reported higher proportion of severe objective and severe subjective burden than wives, (51.9% vs. 28.8) and (43.2% vs. 29.7%), respectively.
| Discussion|| |
Families play a complex role in substance dependence. The assistance they provide is multifaceted including direct care, financial assistance, and management of illness symptoms, as well as helping directly their relative's engagement and retention in treatment. As they can be a source of help to the treatment process, they also must manage the consequences of the addictive behavior.
Substance dependence-related family burden is important for India and other developing countries because joint family is a more common pattern and because the associated factors can influence the outcome and can be useful in planning interventions to help the families cope with substance dependence.
The demographic and clinical profile of our sample was generally similar to that reported in earlier studies.,,,, As compared to two other studies, in Punjab, mean monthly family income and mean monthly expenditure over substance of our sample were higher and could be due to the high prevalence of more expansive opioids' dependence in our group.
Majority (48%) of our patients had two substance dependence followed by three substance dependence (26%), followed by four substance dependence (13.3%) and only 12.7% had single dependence. These findings were similar to National Survey of 2004 in India, International Narcotics Control Strategy Report of 2004, DAMS data of 2006–2007 and another study. These studies also reported that opioids are emerging as most commonly used substances of dependence in the country.
One hundred and ten patients (73.3%) in our study had taken treatment in the past for substance dependence whereas 40 patients (26.7%) had never taken treatment for substance dependence. This is in contrast with one of the earlier studies which showed that 92.5% patients had never taken treatment for substance dependence. The difference may be due to the fact that awareness about drug dependence in society is increasing along with expansion of treatment facilities leading to more treatment seeking for substance dependence.
Maximum number of the caretakers (34%) was of the age group 42–54 years with mean age 45.85 ± 12.92; majority (68%) of caretakers were females and only 32% of the caretakers were males. This is in conformity with Mattoo et al. who found mean age of caretakers as 43.8 ± 12.4 and majority (64.1%) were females and Lamichhane et al. revealed that females outnumber males as caretaker (46.7%). In our study, 77.3% caretakers were literate and 22.7% caretakers were illiterate. Majority (61.3%) of caretakers were homemakers, followed by 15.3% were farmers and only 1 (0.7%) caretaker was unemployed. These findings are supported by Lamichhane et al. who revealed that 66.7% caretakers were literate and 46.7% caretakers were homemakers, and Mattoo et al. reported that mean education of caretakers was 10.42 ± 3.91 years and 49.1% were homemakers. Our study revealed that maximum 53 (35.3%) of the caretakers were mothers followed by 49 (32.7%) were wives, followed by 38 (25.3%) were fathers, and 10 (6.7%) were other relatives. This is in contradiction to two earlier studies, which reported wives as the most common caretakers; this difference may be due to more prevalent joint family structure in our region.
In our study, out of 150 caretakers, 98 (65.3%) had moderate objective burden and 52 (34.7%) had severe objective burden. Whereas 111 (74%) had severe subjective burden and only 39 (26%) had moderate subjective burden. Our findings of moderate objective burden more common than severe (65.3% vs. 34.7%) corroborate with the two earlier studies, which revealed moderate objective burden more common than severe – 77.5% and 52.5%, respectively. However, Shyangwa et al. reported severe objective burden (56%) more commonly than moderate objective burden; this is in contrast to our study. In subjective burden category, we found severe burden more common than moderate (74% vs. 26%); this is in conformity with Lamichhane et al. and Shyangwa et al. who reported severe subjective burden in 73.3% and 74% of caretakers, respectively. Our finding revealed 34.7% of caretakers perceived “objective burden” as severe which was less than subjective burden (74.0%). This difference might be due to the structure of questionnaire, where subjective burden was assessed by only one question and that was basically related to emotional feeling, whereas objective burden was measured by more precise method, i.e., adding score from multiple items (24 items).
Our study revealed the overall mean score in total objective burden – 20.55 ± 6.39. Mean score in “financial burden” category was 6.07 ± 2.18. Mean score in category “disruption of routine activities” was 5.64 ± 2.17, whereas in category “disruption of family leisure,” mean score was 3.30 ± 1.65. Mean score in category “disruption of family interaction” was 3.44 ± 1.27. The mean score was 0.19 ± 0.48 in “physical health” category and was 1.84 ± 0.82 in the “mental health” category. Mean score of subjective burden was 1.74 ± 0.44. These findings corroborate with one earlier study but mean scores in all categories are higher than one another study which might be due to different sociodemographic variables of patients and caretakers and different clinical profile of patients as we had more patients with more than one substance dependence.
Severe objective burden was seen in families with low monthly income and higher monthly expenses on substances which is in conformity with the findings of Malik et al. and Mattoo et al. who also showed association of family burden with low income. Objective burden was also associated with number of substances and type of substances and past treatment. Caretakers of patients with more than one class of substance dependence reported severe objective burden (94.1% vs. 5.8%). Higher proportion of severe objective burden (80.8% vs. 19.2%) and severe subjective burden (73% vs. 27%) were seen in female caretakers than males, and mothers reported higher proportion of severe objective burden (51.9% vs. 28.8) and severe subjective burden (43.2% vs. 29.7%) than wives. Our findings that wives reported severe burden less commonly than mothers in both objective (28.8% vs 51.9%) and subjective burden category (29.7% vs. 43.2%) is supported by Lamichhane et al. who found that burden on all problem areas were less on spouse as compared to nonspouse caretakers (20.65 ± 9.61 vs. 30.14 ± 8.56). This signifies that spouse may be more forbearing to the burden than the other family members. Our finding of higher proportion of severe burden reported by female caretakers and its association with relation of caretaker with patients contrasts with two earlier studies, which did not show any such association; but, it is said that the relationship of the primary caregiver to the patient may also mediate the experience of burden and the concept of family burden according to Jenkins and Schumacher, 1999; St. Onge and Lavoie, 1997 is often a “gendered” notion, with the largest part of primary caregiving being provided by female relatives. Moreover, women were the most important treatment motivators of individuals.
We found that family burden was associated neither with age, education, occupation, marital status, or duration of dependence of the patients nor with family type, background, caregiver's age, education, or occupation. This is similar to the findings of Mattoo et al. However, they reported higher burden being associated with rural location while such an association was not found in our study.
| Conclusion|| |
Looking at the finding of our study, it can be concluded that substance dependence was associated with substantial burden for the family members, more for subjective and objective burden in families with low income and with patients who are dependent on more number of substances and patients who had taken treatment in the past. Higher proportion of severe burden was reported by female caretakers. Burden on family members was influenced by number of substances, substance type, previous treatment as well as sex and type of caretaker and socioeconomic attributes of family. These findings may suggest directions for future research in this area. Family plays a complex role in substance dependence. Hence, there is a vital need to improve communication between families and health providers, and active involvement of families in the therapeutic process is needed. Providing services to the whole family and addressing family burden can improve treatment effectiveness.
However, there were few shortcomings in this study:
- The sample size was small and recruited from a tertiary care center; hence, the findings could not be generalized to other treatment centers. Sampling method used was convenient sampling which has its own limitations
- The reliability of the translated version of FBIS has not been examined
- Assessments of burden were cross-sectional and nonblind, and other sources of burden such as other stressors and life events were also not assessed
- All information was obtained from a single family caregiver and assessment of subjective burden was global, and several mediators such as coping, appraisal, expressed emotions, and social support were not assessed. Structured instrument was not employed to ascertain caregivers' psychological status.
Future research, in larger samples with a prospective design, should focus on the exact effects of substance and other mediators such as family type, coping and social support on the family burden.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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Dr. Arvind Sharma
Department of Psychiatry, Guru Gobind Singh Medical College, Faridkot, Punjab
Source of Support: None, Conflict of Interest: None
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]