|Year : 2016 | Volume
| Issue : 2 | Page : 143-148
A study of experiences of stigma and discrimination in patients with schizophrenia and bipolar mood disorder
Smruti S Karambelkar, Bharat Navinchandra Panchal, Ashok Ukabhai Vala
Department of Psychiary, Government Medical College and Sir Takhtasinhji General Hospital, Bhavnagar, Gujarat, India
|Date of Web Publication||25-Apr-2016|
Dr. Smruti S Karambelkar
Room No. 133, Department of Psychiatry, Government Medical College and Sir Takhtasinhji General Hospital, Bhavnagar, Gujarat
Source of Support: None, Conflict of Interest: None
Objectives: To study the experiences of stigma and discrimination among Schizophrenia and bipolar mood disorder (BMD) patients and to find if any difference in them is present. Materials and Methods: 50 patients diagnosed as BMD and Schizophrenia and in remission for at least 3 months were interviewed by a semi-structured scale. The verbatim was then analyzed qualitatively. Results: Eighty-six percent (86%) patients experienced stigma. Schizophrenia and BMD patients did not differ in their experiences of stigma proving that the tag of mental illness was stigmatizing enough and had no relation to the duration or intensity of illness. The major themes emerging out of the qualitative analysis showed that most of the patients experienced stigmatizing experiences at home with family members which included shame and ridicule, belittlement of opinion. At work place, inability to hide illness lead to change of job or been considered inept to carry out responsibility. Sixty percent (60%) believed that stigma could not be eradicated. On ways to combat stigma, most patients believed that adequate rehabilitation and an assertive attitude on the part of patients was most likely to work. Conclusions: Despite having longer remissions and a milder course than Schizophrenia, BMD patients experienced as much stigma as Schizophrenia patients.
Keywords: Bipolar, India, schizophrenia, social stigma
|How to cite this article:|
Karambelkar SS, Panchal BN, Vala AU. A study of experiences of stigma and discrimination in patients with schizophrenia and bipolar mood disorder. Indian J Soc Psychiatry 2016;32:143-8
|How to cite this URL:|
Karambelkar SS, Panchal BN, Vala AU. A study of experiences of stigma and discrimination in patients with schizophrenia and bipolar mood disorder. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Dec 14];32:143-8. Available from: http://www.indjsp.org/text.asp?2016/32/2/143/181097
| Introduction|| |
Stigma associated with mental illnesses is an old and worldwide phenomenon. The word stigma referred originally to a mark or brand on Greek slaves, clearly separating them from free men. Within the last two decades, combating and reducing worldwide stigma toward mental illness has become a major movement in the field of psychiatry. The World Psychiatric Association's “Open the doors” program, an initiative for the awareness about Schizophrenia and its treatment options is one such example. The “Changing minds” initiative by the Royal College of Psychiatrists imparted information to the public about common mental illnesses and dispelled myths.
The need for fighting this stigma is highlighted in the effect that it has on treatment seeking; preventing patients as well as relatives from seeking treatment and continuing it on a long-term basis. One of the most tragic consequences of the stigma of mental illness is that it leads to a significant loss of self-esteem, as a result of which people suffering from mental illness see this condition as a failure on their part. Link and Phelan  define stigma in terms of five interrelated components: labeling, stereotyping, separation, status loss, and discrimination. This discrimination is experienced by the patient in almost all spheres of his life; work, family life, and marital life; creating stress and, in turn, affecting the illness prognosis.
This study aims to learn more about the experiences of stigma in patients having a bipolar mood disorder (BMD) and Schizophrenia. This was done so because first a number of attempts have been made to measure attitudes toward mental illness and stigma, most of which have focused on attitudes toward mental illness held by people in the community, a caregiver or a family member being generally interviewed rather than the patients themselves.,,, Second, whereas there has been research about stigma in Schizophrenia, there is hardly any on the experiences of BMD patients in the Indian scenario; despite BMD being a long-standing, chronic illness like Schizophrenia. Third, on the one hand, the diagnosis of a mental illness is coupled with negative stereotypes regardless of the presence of abnormal behavior, a fact highly relevant for the remission periods in the lives of BMD patients. On the other hand, unlike Schizophrenia it has periods of remission which can last long and have relatively less functional impairment, hence, it was assumed that the stigma experienced by patients with BMD must be different.
| Materials and Methods|| |
This was a cross-sectional study. A total of 50 patients from the psychiatry OPD of a Tertiary Care Hospital were interviewed after taking a written informed consent. Sampling was done by nonrandomized quota sampling. Of these patients, 28 had been diagnosed as BMD and 22 had Schizophrenia. The consent of a close relative if present was also taken. Interviews were conducted with patients alone or in the presence of a relative. The patients' experiences were recorded.
Prior clearance from the institutional review board was taken before starting the study.
Inclusion criteria were:
- A patient with a diagnosis of Schizophrenia or BMD according to diagnostic and statistical manual (DSM) (IV) at the time of interview
- A continuous remission of at least 3 months period was considered necessary as the presence of delusions, depressive symptoms, or negative symptoms would affect the judgment of the patient
- Willingness to give written informed consent.
History from the patient, caregivers, and the patient's old case sheets along with clinical mental status examination were used for diagnostic confirmation made as per DSM-IV.
The case record form contained a patient information sheet giving information regarding the purpose of the study and what would be required of the patient.
A semi-structured interview scale developed at NIMHANS was administered by the investigator. The questionnaire was translated into the vernacular language. It had been developed as a part of the Indian initiative of the World Psychiatry Association program to reduce stigma. Its validity has been tested in over 1000 patients in four cities of India. It consists of two parts, first part recording the demographic data of the patient while the second part measures the stigma and discrimination experiences. Narratives were first transcribed verbatim and then translated into English by the researcher.
The analysis between the demographic variables of the Schizophrenia and BMD group were compared using Chi-square test. The analysis of the narratives of the patients was done qualitatively by framework method. The narratives were read several times to identify any newly emerging themes. For natural and objective analyses, the data were coded manually into constructs that clearly emphasized stigmatizing experiences into various spheres of a person's life.
Tables were made for each theme and the various responses were listed.
| Results|| |
The sociodemographic characteristics are as follows. We had 28 BMD patients and 22 schizophrenia patients. On comparing the patients with BMD with Schizophrenia, no significant differences were found in the sociodemographic characteristics. Chi-square test was applied to compare the two groups [Table 1].
|Table 1: Demographic variables of patients with schizophrenia and bipolar mood disorder expressed in number and percentage and compared by Chi-square|
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Of the 50 participants, 43 (86%) reported experiencing stigma. Of these, 20 patients suffered from Schizophrenia while 23 were patients with BMD. Both groups of patients with BMD and Schizophrenia showed similar tendencies to hide their illnesses, i.e., 46% of BMD patients (n = 13 out of 28) and 43% of Schizophrenia patients (n = 10 out of 22) preferred to hide their illness (P = 0.94). Rural and urban population (regardless of diagnosis), when compared also did not show any significant difference in their propensity to hide or reveal illness (P = 0.61) (n = 50) [Figure 1].
|Figure 1: Comparison between urban and rural population in terms of hiding and revealing the illness|
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Stigma was experienced equally in acute, chronic, and both stages by both, patients with Schizophrenia and with BMD (n = 43) (P = 0.36) [Figure 2].
|Figure 2: Graph showing number of patients of schizophrenia and bipolar mood disorder experiencing stigma in various stages of illness|
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Thirty patients (60%) believed that stigma cannot be changed, out of which 16 were patients with BMD and 15 were patients with Schizophrenia. 12 patients (24%) were not sure about it, out of which 9 suffered from BMD and 3 from Schizophrenia. Only 8 (16%) patients, 5 patients with BMD and 3 patients with Schizophrenia, believed that stigma can be changed (n = 50).
Most of the patients attributed the cause of stigma to the patients' socially unacceptable behavior during the illness (32%), not able to work (28%), while only a few thought, it was due to black magic (14%) (n = 50) [Figure 3].
|Figure 3: Proportion of attribution of stigma to various causes by patients of both groups; schizophrenia and bipolar mood disorder|
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More than 50% believed psychiatric illnesses to be the most disabling and “dangerous,” over other severely and permanently disabling illnesses which were blindness, loss of hearing, loss of limb, and being bedridden permanently.
Qualitative sampling strategies do not aim to identify a statistically representative set of respondents, so expressing results in relative frequencies may be misleading. Simple counts are sometimes used and may provide a useful summary of some aspects of the analysis.
There were no significant differences in the type of experiences seen in the narratives of people with Bipolar illness and Schizophrenia and are described together.
The following categories were made:
- Experiences with family members
- Work-related experiences
- How stigma affected view of self
- Effect on married life and prospects
- How stigma can be removed.
Experiences of stigma with family and friends
Of the 43 patients who experienced stigma, almost everyone had experienced some difficulties at home. These experiences showed a wide variety of different experiences. Many family members believed that the patient was pretending to act ill to avoid work.
“My sister teases me that I am pretending to be ill so that she has to do all the work and if I deny that, she then says that proves I am mad.”
“I know that my family members think I am lazy.”
Many experiences arose out of fear for the patient in the mind of the relatives; wherein, it was difficult to get back to the previous social standing and comfort level in the relationship.
“After I come back home from hospital whenever I have been unwell, it is difficult to get back to normal with family and friends. They keep looking at me. My sister in law even said I should not be left alone with children as it may be dangerous.”
“Me and my husband now live separate from the rest of the joint family as my in-laws are afraid of me and say that I may do anything at any time.”
Ridicule and being made fun of was more common when the patient was with siblings and friends. Patients also said that it usually decreased with passage of time and longer remission periods.
“At the beginning neighbors and friends at the local shops made fun of me but it is not so now that I am very well.”
“Siblings tease me and act out my behavior of acute phase of illness.”
Many patients found it frustrating that after the illness their opinion or ability to do certain work or take important decisions was belittled even after years of remission.
“As I talk more, get very angry and start shopping more in my illness phase my mother is always very vigilant and I am not allowed to buy anything new and enjoy too much, or go out as she is always afraid I am about to fall ill again.”
“In family matters, family members do not count my opinion anymore saying that as I have had illness I won't understand.”
“Even my children tell my wife that I am starting to act “mad” whenever I get angry even though that has always been my nature.”
Physical violence in terms of beating, or locking up patients was reported only in the acute stage.
“Whenever I get ill my brothers beat me up and lock me as I break things and talk more.”
“People tie me up and beat me as they feel that I have the devil's shadow.”
“The family becomes very afraid when my illness increases so they lock me up at night”
Total abandonment was not reported, but the threat was eminent for many patients.
“No one wanted to keep me with them. I would have to move from parents home to brothers, but now that I earn from my pan shop at least I can stay at one place.”
Effect on workplace
Patients report a change of professions due to various reasons. A major concern was public knowledge of their illness which caused other people to consider them incapable after the illness.
“Now I do not get allotted some important tasks that I used to get before and it's as if they expect me to make mistakes.”
“I do not tell anyone at my current place of work since 8 to 10 months, that I am on psychiatry drugs as they will not consider me capable and I have learned that there are always negative reactions.”
“When people know, some of them tell others on purpose as if to warn them against me.”
There was a change of their current occupational situation after getting better. Sometimes, a change of professions was made as family members considered it to be responsible for patients' illness.
”I had to leave my school, the only one school in the village, because I had misbehaved and made fun of teachers when I was ill.”
“Previously I used to work in a private hospital, giving injections and setting up pints but I lost that job when I was ill as they fear that I may be dangerous if I got ill and it could happen anytime.”
“I was an emerging talent in a local political party and used to meet many people but my family thought that is what caused my illness; hence I had to leave that career.”
“Other vegetable sellers would not let me sit at my local spot of selling vegetables. All the ladies would ask me a lot of questions and suggest black magic remedies.”
Being made fun of was reported as commonplace.
“There is always a fear at the workplace when you return back to normal as they will ask you all questions. Some even compare you with any TV character and joke about it.”
Impact on self
Many tended to blame themselves for the illness.
“I keep thinking what is it that I did is responsible for this illness there must be some fault.”
Embarrassment and shame tended to be common, which led to nervousness and loss of confidence. Many wanted to stop medicines.
“In the beginning I thought that I would have to live in an asylum if I got ill again and did not work. I thought that my life was finished.”
“I felt very ashamed of what I talked and did when I was ill, hence it makes me nervous to talk to people.”
“My mind does not work as fully as before. I get tremors and nervous. So I want to stop medicines.”
Effect on married life and prospect of marriage
Of the 43 patients who reported stigma, 3 were separated from their spouses while 3 were divorced. Out of the 30 currently married only very few reported specific stigmatizing experiences. Most of them talked about some occasional friction which was not bothersome.
“Wife says she married to a madman.”
“My wife left me because she wanted children but was afraid that all of them will be affected by illness when the doctors said that it is hereditary.”
“It was difficult to adjust back to normal after my illness as my wife still did not know whether it was black magic or illness or whether I would harm her. She had left the children at my parents place.”
Although our study is about stigma, a special consideration is to be given to the fact that many of them reported a constant support from their spouses and credited them for their stable recovery, a fact not to be ignored but to be considered in maintaining successful remissions.
How can stigma be removed?
Patient's opinions were divided mostly into two suggestions wherein the patients reported that the stigma can only be changed when more and more patients start working again and become successful. They were also of the opinion that only the patients' attitude and confidence at facing this stigma can reduce it. This puts the onus on the patient's themselves. Their next opinion was of educating the relatives about the illness and the difficulties that the patient has faced and the need for support. Advocacy groups, posters, and advertisement were not thought to be much effective.
| Discussion|| |
The main finding in our study was that there were no significant differences in the type and various parameters of stigma affliction among Schizophrenia and BMD patients. This means that the tag of mental illness itself is enough to cause stigma, with no relation to remissions or duration of illness or the severity of the episodes.
Our conclusion matches that of a review by Hawke et al. that the stigma in BMD is comparable to that of other severe mental illnesses, such as Schizophrenia and is pervasive among all the aspects of the patients life. These findings are in contrast to a study by Karidi et al. that stigma experienced by patients with BMD was not as severe as that in Schizophrenia and caused less social isolation than Schizophrenia. This may be so because of usage of structured rating scales leading to a cutoff point, hence degree of severity is more exactly measured.
Stigma was experienced equally in all stages of illness, acute phase, and remission, which is also different from the study by Loganathan and Murthy. which showed that stigma was more in the acute than in the remission phase.
Both groups, i.e., Schizophrenia and BMD showed equal tendency to hide illness. Among those who experienced stigma 21 (49%) patients revealed their illness to others while 22 (51%) patients hid their illness which was different from the findings of previous studies, the IndiGo study by Daumerie et al., Switaj et al. and Loganathan and Murthy  that stigmatization experiences were common among respondents who most frequently reported having concealed their illness.
When the urban and rural sample were compared, there was no difference noted in their tendency to hide the illness from others. This finding is in contradiction with study by Loganathan and Murthy, who showed that people who lived in urban areas felt the need to hide their illnesses much more.
What was similar to previous studies were the reasons given for the origin of this stigma, unacceptable behavior being the most common reason given. Most people who have family members with chronic psychiatric illness did not believe in black magic as causing the illness., There was no difference in the manner in which the patients thought about the lasting effects of stigma as they as a group both (60%) believed that stigma could not be eradicated. On how to deal with stigma, it was heartening to know that the patients believed it was their change in behavior, a more confident and assertive attitude, and good occupational functioning that would help combat stigma: “actions speak louder than words.” All the more reason then, to pay more attention on rehabilitation of the patient, which would go a long way in maintaining not only remission but also improving the overall quality of life of the patient and preventing the exposure to stigmatizing experiences. Next in line was their opinion about psychoeducation for their families, which would not only reduce relapses but would also prevent discriminatory experiences for the patients, and also be helpful for the families themselves.
Psychoeducation for the families is again highlighted by the fact that almost all patients reported stigmatizing experience by their families. Marital life discord leading to separation/divorce was reported only in 6 patients (12%). This could be explained by the fact that because most of the patients in our study were stable and in remission for a longer time.
Physical violence was experienced mostly during the acute phase and hardly during the chronic phase. Ridicule was present more during the chronic phase.
At workplaces, most of the difficulties arose out of fear toward patients and lack of knowledge of the illness as people expected them to again decompensate anytime. Their opinions were not worth considering anymore. This finding is similar to previous studies by Switaj et al. and the IndiGo study  wherein the patients were worried about being viewed unfavorably and been treated as less competent. For a patient, who has recovered enough and mustered the courage to get on with daily life, this can come as a big disappointing hurdle that is out of their control. It can be solved only through community awareness and legal steps to prevent discrimination at the workplace, but even that may not apply to many patients in our study who were from a lower socioeconomic class doing minor labor work and seasonal businesses.
The effect of stigma on patients, though, was surprising to reveal, did not lead them to stop medications although many had considered it. Many of them blamed self for the illness similar to the loss of self-esteem reported by Mileva et al. Answering questions regarding illness made them uncomfortable, and even the anticipation of these questions lead to nervousness. Giving coping skills for dealing with such experiences would be helpful.
From the above findings, our study agrees with Shrivastava et al. that antistigma programs need to move from the community to the clinics and be individualized.
Thus, we conclude by saying that stigma is pervasive across the lives of patients with Schizophrenia and BMD and permeates their socio-occupational and personal functioning. The best way to eradicate stigma according to patients was to achieve an optimal occupational functioning level.
The above variety of experiences can be used to make a scale for stigma assessment more suited for the Indian sociocultural background as there is no standardized assessment scale available.
| Conclusion|| |
Patients with Schizophrenia and BMD experienced similar stigmatizing experiences. These arose out of fear and lack of knowledge regarding the illness. They were most common in family life. Most patients believed that full rehabilitation of more and more patients could help in decreasing this stigma.
There is need of quantification of the stigma phenomenon by validated scales applicable to the particular sociocultural background for better understanding of it and the effect of antistigma measures.
Not many incidences regarding unwanted sexual experiences or sexual problems due to stigma were noted. A reason being that as unwanted sexual experiences was not the specific target they were not evaluated in isolation. Some experiences, especially of physical and sexual abuse could have been missed due to social desirability bias.
As the sample size was small, there were limitations in applying many statistical tests and may not be representative of the population.
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Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]