|DR. BUCKSHEY AWARD PAPER
|Year : 2014 | Volume
| Issue : 1 | Page : 4-9
Stigmatizing experiences of patients with psychiatric disorders and their caregivers
Rohit Garg1, BS Chavan2, Priti Arun2
1 Department of Psychiatry, Government Medical College and Rajindra Hospital, Patiala, Punjab, India
2 Department of Psychiatry, Government Medical College and Hospital, Chandigarh, India
|Date of Web Publication||3-Nov-2014|
Dr. Rohit Garg
Department of Psychiatry, Government Medical College and Rajindra Hospital, Patiala, Punjab
Source of Support: None, Conflict of Interest: None
Background: There has been extensive research on the stigma experienced by patients with psychiatric disorders and their family members. However, very few studies have attempted to compare both the perspectives. Aim: To measure and compare the stigma experienced by patients with psychiatric disorders and their caregivers. Materials and Methods: A total of 143 patients suffering from various psychiatric disorders (including substance use disorders) who visited at the psychiatry out-patient clinic were included, along with their family members. In addition to the sociodemographic and clinical variables, they were assessed using a stigma scale (Hindi version). Results: Patients with psychiatric disorders scored significantly higher than their caregivers on the total stigma scale score as well as on the subscales for discrimination, disclosure and positive aspects. Patients with substance dependence as well as their caregivers had highest total stigma score. The mean difference among the patients and caregivers was highest among the obsessive compulsive disorder subgroup (P = 0.012) and lowest among the schizophrenia subgroup (P = 0.045). Conclusion: Stigma and discrimination are deeply rooted among patients and their caregivers. Tackling stigma and discrimination should form an integral part of the therapeutic process.
Keywords: Psychiatric disorders, stigma, substance dependence
|How to cite this article:|
Garg R, Chavan B S, Arun P. Stigmatizing experiences of patients with psychiatric disorders and their caregivers. J Mental Health Hum Behav 2014;19:4-9
|How to cite this URL:|
Garg R, Chavan B S, Arun P. Stigmatizing experiences of patients with psychiatric disorders and their caregivers. J Mental Health Hum Behav [serial online] 2014 [cited 2020 Aug 15];19:4-9. Available from: http://www.jmhhb.org/text.asp?2014/19/1/4/143883
| Introduction|| |
Stigma against mental disorders is a powerful and potentially reversible contributory factor towards the reluctance of many people to seek help for mental illness. Stigma may be present at the individual, family and community level.  Patients with mental disorders are stigmatized and suffer adverse consequences which might include social isolation and rejection, decreased access to treatment, discrimination in education, employment and marriage. The added burden that stigma imposes on the struggle to recovery can alter behaviour, generate anxiety, and ultimately cause isolation from the mainstream culture. 
The impact of 'family stigma' also referred to as 'courtesy' or 'associative' stigma is deleterious. Parents are often blamed for causing mental illness in their children through poor parenting.  Caregivers face challenges like financial burden, rejection by others, self-doubt, blame, shame, guilt, marital stress, difficulty in marriage of ill person and his siblings in the family, dealing with psychiatric symptoms in public, and disclosing the illness to others. ,,,, These stigmatizing experiences of the caregivers may lead to deterioration among the relations between patients and caregivers, thus further aggravating the problems faced by the patients. 
Stigma and discrimination experienced by patients with psychiatric disorders and their family members has been extensively studied during recent times. However, only a scant research has attempted to compare the stigma among the patients and their caregivers. In an Indian study on stigma among patients and caregivers, it was found that both patients and caregivers experienced stigma and discrimination.  In one study, caregivers felt that patients suffered more stigma than the caregivers in most of the areas.  An important lacuna of the research is that stigma has been estimated on the basis of subjective reports of the patients and caregivers and hence, is not measurable and cannot be compared.
The present study was planned to compare the experiences of stigma and discrimination among patients with psychiatric disorders (including substance dependence) and their immediate family members using a standardized objective measure of stigma in Hindi.
| Materials and Methods|| |
The study was conducted at the Department of Psychiatry, Government Medical College and Hospital, Chandigarh between April and May 2012. The Ethics committee of the institution approved the study.
The sample consisted of 143 consecutive patients having psychiatric disorders meeting the selection criteria (specified below) and their family members who accompanied them to the hospital for treatment. Patients having psychosis, depression, obsessive compulsive disorder (OCD) and substance dependence who were more than 16 years of age, who could read and understand Hindi and agreed to participate in the study were included. For inclusion into the study, the family members should have been living with the patient for at least past 1 year and should have been directly involved in the patient care.
Patients who had family history of mental illness, dual diagnosis, had poly or multiple substance dependence, mental retardation or those having any other stigmatizing condition like HIV, TB, leprosy, epilepsy and vitiligo were excluded. The diagnosis was made as per ICD 10 diagnostic crietria.  Informed consent was taken and the assessment was made on the following scales:
Semi structured proforma
Sociodemographic data was recorded on a semi structured proforma that included age, gender, education, occupation, marital status, locality, family type, distance from hospital and monthly family income for both the patient and the caretaker. Clinical parameters included diagnosis, total duration of illness, course of illness (episodic or continuous), months of illness during the illness period, current status of the patient (in remission or not) and whether the patient had ever been admitted to a psychiatric facility or not.
For the purpose of this study, the Hindi version  of the stigma scale developed by King et al. was used. The scale consists of 28 items, divided into three domains namely discrimination (13 items), disclosure (10 items) and positive aspects (5 items). The score on individual items is added to get the total score. The scale was found to be reliable in a sample of 218 patients (Cronbach's alpha 0.840) and 202 caregivers (Cronbach's alpha 0.812).
Severity of the illness was measured on the category appropriate scale for measuring the severity of illness (YBOCS for OCD,  Hamilton rating scale for depression  and Brief Psychiatric rating scale  for schizophrenia and other psychotic disorders).
All analyses were conducted using SPSS for Windows (version 15.0; SPSS Inc., Chicago, IL, USA). Discrete categorical data were presented as n (%); continuous data are given as mean ± SD or median and interquartile range, as appropriate. Normality of quantitative data was checked by measures of Kolmogorov Smirnov tests of normality. For skewed data, Kruskal-Wallis test was used. For normally distributed data, one way ANOVA was applied. For categorical data, comparisons were made by Pearson Chi-square test or Fisher's exact test as appropriate. Predictors for difference of score between caretakers and patients Scores were identified by multivariate regression analysis. All statistical tests were two-sided and performed at a significance level of α = 0.05.
| Results|| |
Results showed that 42% patients were less than 30 years of age whereas 50.3% caregivers were more than 45 years old. Male caregivers accompanied 62.2% of patients. 78.3% patients had a continuous illness and 74.1% patients had been admitted to a psychiatric facility at some point in their life. [Table 1] shows the diagnoses-wise break-up of the participants'sociodemographic and clinical data.
Most patients having schizophrenia and other psychotic disorders were less than 30 years old. Higher number of patients in each diagnostic subgroup had less than 12 years of formal education. Patients were accompanied by parents and spouses and male family members in all the subgroups except persons with substance dependence who were accompanied by wives. As can be seen from [Table 2], the stigma scale scores were not significantly different for different caregivers.
|Table 2: Relation of caregivers to patients and their total stigma scale scores|
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The mean stigma scale score of 143 patients was 27.66 ± 10.65, 10.30 ± 6.09, 11.09 ± 5.65 and 6.27 ± 2.66 on the total scale score, discrimination subscale, disclosure subscale and positive aspects subscale respectively. The corresponding scores for caregivers were 20.86 ± 10.07, 7.88 ± 5.54, 9.24 ± 5.78 and 3.73 ± 2.05 respectively. The difference between caregivers and patients on all the sub scales was statistically significant (P < 0.05). Thus, the stigma was found to be significantly higher among the patients as compared to caregivers.
The effect of various variables on the difference of the stigma scale scores among the patients and the caregivers was seen using multiple regression analysis [Table 3]. It can be seen that the difference among the patients and caregivers was affected by the type of diagnosis, whether the illness was episodic or continuous and the months of illness. Further analysis revealed that the mean difference of stigma scores was highest among patients with OCD and their caregivers (mean difference 16.14 ± 12.06, P = 0.12) and it reduced among the groups in depression (mean difference 6.88 ± 11.87, P = 0.000), substance dependence (mean difference 6.76 ± 10.31, P = 0.007), other psychotic disorders (mean difference 6.38 ± 11.22, 0.000) and schizophrenia (mean difference 4.38 ± 9.38, P = 0.045) in that order [Table 4].
|Table 4: Difference among the stigma scale scores among patients and caregivers|
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Further analysis showed that among the patients, the total stigma score decreased in the order of substance dependence (34.66 ± 9.57), OCD (32.86 ± 10.88), psychotic disorders other than schizophrenia (27.95 ± 9.92), depression (25.02 ± 10.89) and schizophrenia (24.57 ± 9.32). Among the caregivers also, the total stigma score was maximum among caregivers of patients with substance dependence (27.90 ± 8.82) and reduced in the order of psychotic disorders other than schizophrenia (21.57 ± 9.93), schizophrenia (20.19 ± 8.88), depression (18.14 ± 10.09) and OCD (16.71 ± 8.81). The stigma scale score was significantly higher for patients than caregivers in all the diagnostic subgroups [Table 4].
| Discussion|| |
The present study is an attempt to measure and compare stigma among patients and their caregivers using a standardized scale. Although stigma is a major factor determining entry into the treatment facilities, adherence to treatment, and rehabilitation, there is very limited research on stigma and the scanty information is based on subjective statements and case studies without using standardised tools. To our knowledge, this is the first study that directly measures stigma using a scale that gives an objective score.
Majority of the patients in our study were young and they were accompanied by elderly family members, mostly parents. It is a common scene in the Indian psychiatry clinics to see elderly parents accompanying their offspring who are mentally ill. It might be due to the social structure in our country where parents are concerned about the health of their offspring even after they are married and are settled into their jobs. This has been reported in previous studies also where parents were most common relatives accompanying the patients to the hospital and the mean age of patients and family members was less than 30 and more than 45 respectively. ,
The father of a 30 years old male patient with schizophrenia narrated "his wife left him after he developed this illness. But we cannot leave him since he is a part of us."
Parents of a 23 years old female with schizophrenia narrated their woes "a boy came to see her with his family members. However, one of our neighbors told them that our daughter was once admitted to a psychiatry ward. They insulted us and refused to marry her."
Results of the present study showed that patients have significantly higher stigma than their family members and this difference persisted across all diagnostic subgroups. This difference might have resulted from multiple factors. The first reason could be the fact that whereas both patients and family members face stigma and discrimination from the society, patients have another source of stigma in the form of family members. Expressed emotions of the family members like critical comments and hostility are well known constructs that can act as stigmatizing for the patient. It has been previously reported that expressed emotions related to mental disorders are a source of stress for the patient. ,, Though we did not measure expressed emotions in our study, this could be one reason for higher stigma among patients. Apart from expressed emotions, family members often blame the patients own personality and their thinking pattern for their disorder, which could result in more stigma for the patient.  In addition, the patient is the actual sufferer who is faced with a number of restrictions, both from the external world and from within himself. These restrictions can be in the areas of employment, education, marriage, social relations and many others.  Higher stigma in patients than caregivers has been found in a previous study in which the caregivers responded that more number of patients were affected by stigma than caregivers.  In another study, more patients experienced problems in work, social relations, study and marital relations.  Though the illness of the patient puts many restrictions on the family members also, they still have their jobs, social relations and other activities that can act as a buffer and reduce their stigma. In a previous study, it was found that significantly higher number of caregivers (26.67%) than patients (3.33%) reported no effects on their emotions and work due to the illness. 
Persons with mental illness may internalize mental illness stigma and experience diminished self-esteem and self-efficacy. This process is referred to as self-stigma. Research suggests that self stigma results in a loss of self-esteem and self-efficacy and leads to limited prospects for recovery. From a modified labeling theory perspective, these studies assume that prior to being labeled as 'mentally ill,' individuals have internalized cultural stereotypes about mental illness.  When individuals face the onset of a mental illness, the stereotypes they have about the illness become relevant to the self. Individuals constrict their social networks and opportunities in anticipation of rejection due to stigma, which leads to isolation, unemployment, and lowered income. They may also be less willing to seek treatment due to perceived stigma. Along with internalized stigma, these "failures" result in self-esteem and self-efficacy decrements.  All these factors may lead to higher stigma among patients than caregivers.
A 23 years old patient with depression reported "most of the people in the neighborhood are not aware that I am taking these medications. But my family members call me lazy as I have sedation. They do not understand that it is due to the disorder and the medications. Whenever I have any arguments with my siblings, they do not hesitate in calling me mad and crazy."
An 18 years old patient suffering from depression reported "I do not know how I will live with this problem. I would not like to tell about this to anyone while I apply for a job or during a marriage proposal. If people get to know of my psychiatric disorder, they will reject me."
Another 30 years old patient with depression reported "since I have developed this illness, I hesitate in going out and meeting other people, even my best friends. What if they get to know that I have a psychiatric disorder and I am seeing a psychiatrist? Its better to avoid them than being rejected by them."
The results of the present study suggest that patients with substance dependence and their caregivers experience higher stigma than persons with psychiatric disorders and their caregivers. This could be because of the fact that substance dependence is still not considered as a disorder by most people. It is considered as a character flaw and moral weakness by majority. A person with substance dependence is held responsible for his and his family members' problems and it is considered that he willfully indulges in substance dependence. The biological model of substance dependence is mostly ignored while forming these views. , When a person is considered responsible for his own condition, he is likely to be rejected, discriminated against and is viewed unfavorably. Further, the society stereotypes substance users as persons with bad habits, bad character and are dangerous to society. Patients with substance dependence also face a lot of stigma from their family members apart form outsiders. A previous study has also found high stigma among patients with substance users seeking treatment. 
Similarly, many family members are considered as responsible for the substance dependence of the patients. Neglect by parents in childhood and lack of love from wife are often considered the reasons for the beginning and continuation of substance dependence by the patients. These feelings of stigma are internalized by the patients as well as by the family members and thus lead to stigma and discrimination. A previous study reported that most parents blamed their parenting style for their adolescents' substance abuse. They also reported that most neighborhood adolescents' were told by their parents to stay away from their patient. ,
A 40 years old patient with opioid dependence reported "I am sick of all the comments from the society and even my family members. My children have started hating me. People do not talk to me and do not want to work with me. Please help me"
24 years old son of a 50 years old patient with alcohol dependence narrated "every now and then we get a call from someone in the village about my father lying on the road in a drunken state. People call him drunkard and call me the son of a drunkard."
It was found that the difference between stigma scores of patients and caregivers was highest among OCD and least in the schizophrenia subgroup. OCD patients are highly distressed by their obsessions and compulsions. Since obsessions occupy significant amount of time in the life of a person with OCD and compulsions are visible to outsiders, these can be a source of great distress and stigma to the patient.  The family members of a person with OCD on the other hand may consider this as excessive and willful behavior and not as a disorder, thus having less stigma.
A 35 years old patient with OCD narrated "I am sick of repetitive handwashing. My family members keep telling me that I should control this behavior and my friends laugh at me whenever I wash hands without any reason."
The finding of stigma among family members of patients with schizophrenia getting close to that of patients can be easily understood in terms of the visible behavior of the patient. Merely a diagnosis of schizophrenia leads to panic in the family about an untreatable disorder in which the person has abnormal behavior. The public image of a person with schizophrenia and the actual abnormal behavior in the form of delusions, hallucinations, self talking, self smiling leads to increased stigma.  In addition, in many parts of the world, it is believed that schizophrenia is a punishment for the sins committed by the patient or his family members. These causal beliefs further enhance stigma.  All these lead to a high level of stigma among the patients with schizophrenia and their family members.
The wife of a 30 years old person with schizophrenia cried while telling this story "I can not go anywhere with him. He keeps looking in the sky and talks to himself all the time."
Another lady reported her problems about her husband suffering from schizophrenia "most of the neighbors try to stay away from us when we go out. Some have even told me not to get him out of the house as he might hurt someone without any reason."
Thus, the feelings of stigma and discrimination are deeply rooted in the psyche of the patients with psychiatric disorders and their family members. Though stigma has been found to be present as long as mental illness has been known, there is scant research on this social issue especially from India. There are many reasons for this lack of research. Firstly, stigma is a difficult construct to measure. There are not many scales available that measure stigma objectively. Secondly, there has been a recent interest among the researchers to study the biological underpinnings of the psychiatric disorders and the social issues like stigma get ignored. A search in the Indian Journal of Psychiatry reveals that out of the 86 original articles including award papers published since 2011, 14 have been related to biological psychiatry and none to stigma. Stigma needs to be researched in detail so that the interventions to reduce stigma can be planned and self esteem, self efficacy and quality of life of the patients and their family members can be enhanced.
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[Table 1], [Table 2], [Table 3], [Table 4]