|Year : 2019 | Volume
| Issue : 2 | Page : 278-285
Comparison of impact of family stigma on quality of life among caregivers of male inpatients with alcohol and opioid use disorder
Rohit Garg, Abhishek Gupta, Deepam Kundal
Department of Psychiatry, Government Medical College, and Rajindra Hospital, Patiala, Punjab, India
|Date of Submission||23-Oct-2019|
|Date of Acceptance||15-Apr-2020|
|Date of Web Publication||13-Aug-2020|
Dr. Rohit Garg
Department of Psychiatry, Government Medical College and Rajindra Hospital, Patiala, Punjab
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: Caregivers of patients with alcohol and opioid use disorder (OUD) have low quality of life (QoL) and suffer from family stigma. However, impact of family stigma on QoL has not been studied in this population. Materials and Methods: One hundred primary caregivers of male inpatients with severe alcohol use disorder (AUD) (n = 47) and OUD (n = 53) as per the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition were enrolled into the cross-sectional, descriptive study.Participants were assessed using sociodemographic and clinical proforma, World Health Organization QoL-BREF Hindi, and Hindi family stigma scale. Kolmogorov–Smirnov tests and Pearson's correlation were used for statistical analysis. Results: Majority of caregivers were females (64%), homemakers (48%), and married (80%). More than 50% of caregivers resided in rural areas and nuclear families. 46%, 30%, and 24% of caregivers were parents, wives, and siblings and children. Males, caregivers between 31 and 45 years of age, and married caregivers had significantly higher QoL. Parents had significantly lower QoL. Caregivers of patients with AUD had significantly lower overall QoL than that of OUD. Wives faced higher discrimination and overall stigma. Overall QoL, satisfaction with physical health, and environment were significantly negatively correlated with discrimination. Total stigma was negatively correlated with satisfaction with environment. Conclusion: Stigma and discrimination have negative impact on QoL of caregivers. Stigma reduction and QoL enhancement should be integral part of psychosocial interventions for caregivers of patients with AUD and OUD.
Keywords: Alcohol use disorder, caregivers, discrimination, family stigma, opioid use disorder, quality of life
|How to cite this article:|
Garg R, Gupta A, Kundal D. Comparison of impact of family stigma on quality of life among caregivers of male inpatients with alcohol and opioid use disorder. Ind Psychiatry J 2019;28:278-85
|How to cite this URL:|
Garg R, Gupta A, Kundal D. Comparison of impact of family stigma on quality of life among caregivers of male inpatients with alcohol and opioid use disorder. Ind Psychiatry J [serial online] 2019 [cited 2020 Sep 30];28:278-85. Available from: http://www.industrialpsychiatry.org/text.asp?2019/28/2/278/291983
Substance use disorder (SUD) causes enormous burden on the individual, family, and society, both psychologically and in terms of resources. The harms caused by substance use cannot be understood solely using the biological model and sociocultural context has to be taken into account. Indian society places greater value on familial bonds than Western society, and most of the care is provided by the family because of fragmented health care and social structure. Indian family members are involved at each and every step from finding the place for treatment, getting the patients for treatment, staying with the patient at hospital, and ensuring compliance and follow-up after discharge.
The World Health Organization defines quality of life (WHO QoL) as “individuals' perception of their position in life in the context of the culture and the value system in which they live and in relation to their goals, expectations, standards, and concerns.” QoL is affected by multiple factors such as physical and psychological illness, medications, income, housing, employment, and socioeconomic status. One of the important factors that affect QoL adversely is stigma. Family members of patients with stigmatizing disorders suffer from stigma and discrimination, called as courtesy, associative, family, or family stigma. This holds true for caregivers of patients with SUD also. The stereotypes related to family stigma are blame, shame, and contamination. Family is blamed for poor household environment leading to or maintaining the condition, leading to shame. Contamination is the process in which diminished worth is attributed to a family member because of association with a stigmatized persons. Internalization of these feelings leads to family stigma, which causes avoidance, reduced life opportunities, guilt, social exclusion, reduced self-esteem, hopelessness, huge treatment gap, and poor compliance.
An Indian narrative review on SUD and family found that substance use affects the family in diverse ways. However, to the knowledge of the authors, no Indian study has assessed the impact of substance use on QoL of family members. From elsewhere, caregivers of patients with SUD were found to have lower QoL than general population. One study found that QoL of caregivers in the domains such as functional capacity, physical aspect, pain, and vitality was more affected than even alcohol users. Although family stigma has been extensively studied in mental illness, HIV, disability, and some other illnesses, there is conspicuous absence of research on stigma among caregivers of patients with SUD. A previous Indian study found that caregivers of patients with SUD had higher stigma than caregivers of patients with schizophrenia, depression, and obsessive-compulsive disorder.
The impact of family stigma on QoL of caregivers has not been studied in India. Two studies from elsewhere have reported that family stigma reduced QoL among caregivers and anticipated stigma had direct negative impact on psychological and physical health. A few studies among patients have reported that stigma reduced QoL among patients with opioid use disorder (OUD) and severe mental illness., The present study was aimed to assess the impact of family stigma on QoL among caregivers of patients with alcohol use disorder (AUD) and OUD. The study also aimed to find the sociodemographic and clinical factors affecting stigma and QoL in this population.
| Materials and Methods|| |
It was a cross-sectional, descriptive study conducted at 50-bedded model deaddiction center of department of psychiatry at a tertiary care government medical college and hospital in North India from May to October 2018.
The sample consisted of 100 caregivers of male inpatients with severe AUD and OUD diagnosed as per the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM 5).
Primary caregivers between 18 and 65 years and of both genders who gave written informed consent were included. The caregivers of only those male patients were included who fulfilled the criteria for severe AUD and OUD and required admission.
Caregivers who were suffering from SUD or psychiatric illness or refused to participate were excluded. Caregivers were excluded if they or their patient suffered from any other medical or surgical disorder which would lead to a reduction in QoL. They were excluded if caregiver or patient suffered from stigmatizing illness, i.e., mental illness (dual diagnosis) HIV, hepatitis, leprosy, tuberculosis, physical handicap, etc.
All the patients and their caregivers who fulfilled the inclusion and exclusion criteria and gave informed consent to participate were then assessed using the following tools.
Sociodemographic and clinical pro forma
A semistructured pro forma was prepared to record the sociodemographic and clinical variables including caregiver's age, gender, education, occupation, marital status, and relation to patient. Monthly family income, family type, locality, diagnosis of patient as per DSM 5, total duration of SUD and previous hospitalization were also recorded.
World Health Organization quality of life-BREF Hindi version
WHO QoL-BREF Hindi version was used to measure subjective health-related QoL. The 26 items are further divided into four domains (satisfaction with physical health, psychological health, social relations, and environment) and two general questions related to satisfaction with overall QoL and overall health. This is one of the most commonly used scales to measure QoL and has excellent reliability and validity.
The Hindi family stigma scale, which has beenpreviously standardized in India was used for the study. It is a 28-item self-rated instrument with a Likert type scoring (agree, neither agree nor disagree, and disagree). Each item is rated from 0 to 2. The 28 items are divided into three domains, namely, discrimination (13 items), disclosure (ten items), and positive aspects of stigma (five items). Higher score on each domain and the total scale score denotes higher stigma. Negatively worded items are reverse scored. The scale has been previously standardized in India on a variety of patients with mental illnesses and was found to have good internal consistency and test–retest reliability.
Ethical clearance was obtained from the institutional ethics committee. Written informed consent was obtained from the caregivers and assent was obtained from the patients. The Indian Council of Medical Research ethical guidelines on biomedical research on human participants were adhered to.
The statistical analysis was carried out using Statistical Package for the Social Sciences (SPSS Inc., Chicago, IL, USA, version 25.0 for Windows). All quantitative variables were estimated using measures of central location (mean and median) and measures of dispersion (standard deviation and standard error). Normality of data was checked by measures of skewness and Kolmogorov–Smirnov tests of normality. For skewed data or scores, Mann–Whitney test was applied for two groups. For more than two groups, Kruskal–Wallis test was applied. Qualitative or categorical variables were described as frequencies and proportions. Proportions were compared using Chi-square or Fisher's exact test which ever was applicable. To see the relationship between two variables, Pearson's correlation coefficient was calculated. All statistical tests were two-sided and performed at a significance level of α = 0.05.
| Results|| |
A total of 129 male patients aged 18–65 years with severe AUD and OUD as per the DSM 5 were admitted during the study period. Caregivers of 29 patients were excluded (10 because of dual diagnosis, 6 because of multiple SUD, 6 because of comorbid HIV or HCV, and 7 refused consent). The final sample for the study comprised 100 caregivers of male patients with severe AUD and OUD diagnosed according to DSM 5.
[Table 1] shows the sociodemographic and clinical data of caregivers and their correlation with QoL. The caregivers were equally divided into three age groups. Majority of the caregivers were female (64%), had <12 years of formal education (66%), and married (80%). 48% of caregivers were homemakers. 59% of caregivers resided in rural areas and 53% in nuclear families. 46% of caregivers were parents (32 mothers and 14 fathers), 30% were wives, and 24% were siblings (n = 18) and children (n = 6). 53% of patients had OUD and 47% had AUD. 58% of patients had no history of hospitalization prior to the current admission.
|Table 1: Sociodemographic and clinical data and their correlation with quality of life|
Click here to view
QoL in social relationship domain was higher in the age group of 31–45 years as compared to age extremes. Females had significantly lower QoL on satisfaction with environment. Persons in office jobs had significantly lower satisfaction with psychological health. Cohabiting caregivers had better satisfaction with physical health, psychological health, as well as social relationship than noncohabiting caregivers.
Parents had lower satisfaction with overall health and physical and psychological health compared to wives and other caregivers, whereas wives scored significantly lowers in terms of satisfaction with environment. Families whose income was>Rs. 5000 fared psychologically. Rural caregivers had better social relationships. Education, type of family, and history of past admission had no significant impact on QoL. Caregivers of patients with AUD had significantly lower overall QoL than caregivers of patients with OUD.
[Table 2] shows the sociodemographic data of caregivers and its correlation with family stigma. Most of the sociodemographic and clinical variables such as caregiver's gender, education, occupation, family income, family type, and patient's diagnosis and previous hospitalization did not significantly affect stigma. Wives of patients experienced significantly higher discrimination and total stigma than parents, siblings, and children. Married caregivers had significantly higher total stigma than single caregivers. The stigma was lowest among siblings and children. Caregivers in the youngest age group (18–30 years) had significantly lower stigma than other age groups. Total stigma among caregivers was significantly higher when the total duration of SUD exceeded 10 years.
|Table 2: Sociodemographic and clinical data and their correlation with stigma|
Click here to view
It was found that overall QoL, satisfaction with physical health, and environment were significantly negatively correlated with discrimination. Total stigma score was negatively correlated with satisfaction with environment [Table 3].
| Discussion|| |
This is the first study to our knowledge that assesses the impact of family stigma on QoL among caregivers of male inpatients with AUD and OUD. In the present study, majority of the primary caregivers were female (30 wives and 32 mothers) and homemakers (n = 48). The predominance of female caregivers has been reported in previous studies of SUD, psychiatric disorders, and chronic medical illness., These findings reflect the societal tradition, where the role of caregiver is mostly given to women. In the present study, QoL was lower among females as compared to males on 5 of 6 domains of WHO QoL-BREF, though it reached statistical significance only on satisfaction with environment. The female caregivers are required to manage the household, children, and many times financial needs also because of the substance use of the patient. Female caregivers, especially wives, are also prone to domestic violence at the hands of the patient. The family environment becomes unstable, conflicting, threatening, and is characterized by disharmony, distrust, and aggression. These factors may lead to lower QoL among female caregivers as compared to male caregivers.
Forty-eight patients were accompanied by parents during their stay in the ward (32 mothers and 16 fathers). Parents had lower satisfaction with physical and psychological health compared to wives and other caregivers. Majority of the previous literature on caregivers has focused on spouses and children; parents have largely been ignored. Higher negative impact on the QoL of parents could be due to the prevailing social structure in India, in which parents are generally required to take care of ill children due to strong family bonds. A wife might leave the husband if he has SUD or mental illness. However, generally, parents never abandon their children. It is very common to see elderly parents bringing their children for treatment in Indian hospitals. These factors along with the physical ailments that plague old age may lead to lower QoL among parents as compared to other caregivers.
Rural caregivers had significantly better satisfaction with social relations than urban caregivers. In India, majority of rural families are involved in farming, which is based on seasons which means that they have time for social and leisure activities during off seasons. Rural families are also more cohesive and interactive with each other in comparison to urban. These differences between rural and urban families explain better satisfaction with social relations in rural caregivers.
Cohabiting caregivers had better satisfaction with physical health, psychological health, as well as social relationship than noncohabiting caregivers. There are no similar studies to compare our findings. However, research in the general population has shown that married persons have less loneliness, more happiness, and are involved in more intimate and supportive relationships. Being in a relationship may provide a “buffer mechanism” against psychological distress and maintain better QoL.
Caregivers of patients with AUD had significantly lower QoL as compared to the caregivers of patients with OUD. There are no previous studies examining this issue. Although we did not assess reasons for the same, it may be due to the domestic violence that caregivers (mainly spouses) face by persons with AUD. Indian research has consistently shown that spouses face domestic violence due to alcohol use of the husbands and domestic violence is much more common in AUD than on other drugs.
It was found that overall QoL, satisfaction with physical health, and environment were significantly negatively correlated with discrimination. Total stigma score was negatively correlated with satisfaction with environment. Previous studies have reported that family stigma reduced QoL among caregivers and anticipated stigma had direct negative impact on psychological and physical health., The negative impact of family stigma on QoL can be due to many reasons. Family stigma is related to social isolation, exclusion, reduced hope and self-esteem, reduced life opportunities, depressive symptoms, and psychological distress. All these factors may combine to produce a negative impact of family stigma on QoL.
Stigma increased significantly with increasing age. The same finding has been reported previously, which probably happens due to longer caregiving period. It is also evident from the fact that the total stigma increased to maximum among caregivers of patients who were using substance for the longest period.
Wives of patients experienced significantly higher discrimination and total stigma than parents, siblings, and children. There is no previous study comparing stigma among wives and parents. Wives have been reported to be blamed by the patient, parents of patient, or the society for the continued substance intake of their husbands. It has been reported previously that wives even start perceiving inability to prevent addiction as their own personal failure which could result in higher family stigma than parents.
The present study has many strengths such as sound research design, stringent inclusion and exclusion criteria, and use of standardized instruments in vernacular language. However, a few limitations should be kept in mind when interpreting the results. It was a cross-sectional study and does not assess the dynamic nature of stigma as well as QoL. It was a hospital-based study and outpatients were excluded, so the findings cannot be generalized. The sociodemographic data of patients have not been included because the study was carried out among caregivers. Many additional factors which have an impact on stigma and QoL are likely to have been missed. Major among them is the fact that females have a poorer QoL and higher rates of depression and majority of the caregivers in this population were female.
| Conclusion|| |
Caregivers of patients with AUD and OUD have low QoL and high family stigma. Family stigma reduces QoL in multiple domains. Female caregivers, parents, unmarried caregivers, urban caregivers, and caregivers of patients with AUD are at particularly high risk of suffering from low QoL. Stigma increases with increasing age and longer duration of AUD and OUD. Efforts to reduce family stigma and enhance QoL of the caregivers should be an integral part of management plan for patients with AUD and OUD.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Santos EC, Martin D. Caregivers of alcohol addicted patients in the city of Santos, SP, Brazil. Rev Bras Enferm 2009;62:194-9.
Mattoo SK, Nebhinani N, Kumar BN, Basu D, Kulhara P. Family burden with substance dependence: A study from India. Indian J Med Res 2013;137:704-11.
] [Full text]
Sarkar S, Patra BN, Kattimani S. Substance use disorder and the family: An Indian perspective. Med J DY Patil Univ 2016;9:7-14. [Full text]
Earnshaw VA, Bogart LM, Menino DD, Kelly JF, Chaudoir SR, Reed NM, et al
. Disclosure, stigma, and social support among young people receiving treatment for substance use disorders and their caregivers: A qualitative analysis. Int J Ment Health Addict 2019;17:1535-49. [Doi: 10.1007/s11469-018-9930-8].
Arun P, Garg R. Stigma of mental illness. In: Chadda RK, Kumar V, Sarkar S, editors. Social Psychiatry: Principles and Clinical Perspectives. New Delhi: Jaypee Publishers; 2018. p. 409-25.
Marcon SR, Rubira EA, Espinosa MM, Barbosa DA. Quality of life and depressive symptoms among caregivers and drug dependent people. Rev Lat Am Enfermagem 2012;20:167-74.
Garg R, Chavan BS, Arun P. Stigmatizing experiences of patients with psychiatric disorders and their caregivers. J Mental Health Hum Behav 2014;19:4-9. [Full text]
Chiu MY, Yang X, Wong FH, Li JH, Li J. Caregiving of children with intellectual disabilities in China-an examination of affiliate stigma and the cultural thesis. J Intellect Disabil Res 2013;57:1117-29.
Singh S, Kumar S, Sarkar S, Balhara YP. Quality of life and its relationship with perceived stigma among opioid use disorder patients: An exploratory study. Indian J Psychol Med 2018;40:556-61.
] [Full text]
Mashiach-Eizenberg M, Hasson-Ohayon I, Yanos PT, Lysaker PH, Roe D. Internalized stigma and quality of life among persons with severe mental illness: The mediating roles of self-esteem and hope. Psychiatry Res 2013;208:15-20.
Staring AB, van der Gaag M, Van den Berge M, Duivenvoorden HJ, Mulder CL. Stigma moderates the associations of insight with depressed mood, low self-esteem, and low quality of life in patients with schizophrenia spectrum disorders. Schizophr Res 2009;115:363-9.
American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, 5th
ed. Arlington, VA: American Psychiatric Association; 2013.
Saxena S, Chandiramani K, Bhargava R. WHOQOL-Hindi: A questionnaire for assessing quality of life in health care settings in India. World Health Organization Quality of Life. Natl Med J India 1998;11:160-5.
Garg R, Arun P, Chavan BS. Reliability of the stigma scale in the Indian setting. Indian J Soc Res 2013;54:267-75.
Barroso SM, Bandeira M, Nascimento E. Burden in family caregivers of psychiatric patients attending public services. Arch Clin Psychiatry 2007;34:270-7.
Belasco A, Barbosa D, Bettencourt AR, Diccini S, Sesso R. Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis. Am J Kidney Dis 2006;48:955-63.
Pinto MF, Barbosa DA, Ferreti CE, Souza LF, Fram DS, Belasco AGS. Qualidade de vida de cuidadores de idosos com doença de Alzheimer. Acta Paul Enferm2009;22:652-7.
Garg R, Arun P, Chavan BS. Stigma among caregivers of persons with psychiatric disorders. Indian J Med Sci 2017;69:15-22.
Tiwari SC, Tripathi RK, Pandey NM, Srivastava G, Tripathi SM. Psychosocial characteristics as perceived by families in North Indian community. Delhi Psyc J 2010;13:306-13.
Gutiérrez-Vega M, Esparza-Del Villar OA, Carrillo-Saucedo IC, Montañez-Alvarado P. The Possible Protective Effect of Marital Status in Quality of Life Among Elders in a U.S.-Mexico Border City. Community Ment Health J 2018;54:480-4.
Subodh NB, Grover S, Grewal M, Grewal S, Basu D, Mattoo SK. Interpersonal violence against wives by substance dependent men. Drug Alcohol Depend 2014;138:124-9.
Peled E, Sacks I. The self-perception of women who live with an alcoholic partner: Dialoging with deviance, strength, and self fulfillment. Fam Relat 2008;57:390-403.
[Table 1], [Table 2], [Table 3]