|Year : 2018 | Volume
| Issue : 1 | Page : 15-20
Stigma towards mental illness: A hospital-based cross-sectional study among caregivers in West Bengal
Shrabani Mukherjee1, Dipta Kanti Mukhopadhyay2
1 Sister Tutor, School of Nursing, R. G. Kar Medical College and Hospital, Kolkata, West Bengal, India
2 Associate Professor, College of Medicine and Sagore Dutta Hospital, Kolkata, West Bengal, India
|Date of Web Publication||6-Mar-2018|
Dipta Kanti Mukhopadhyay
Lokepur, Near N. C. C. Office, Bankura - 722 102, West Bengal
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: Stigma among caregivers of people with mental illness has a serious impact on the disease outcome and lives of people with mental illness as well as other family members. Objectives: The objectives of this study were (i) To determine the level of self-perceived stigma toward mental illness, (ii) To measure perception to it among caregivers of people with mental illness, and (iii) To identify the factors associated with self-perceived stigma of caregivers. Methods: In this cross-sectional study, a structured interview was conducted among 200 caregivers of people with mental illness in the psychiatry outpatient department of a tertiary care hospital in West Bengal, India. Stigma and perception regarding mental illness were assessed with a validated 12-item Explanatory Model Interview Catalogue and 20-item perception scale, respectively. Information on their sociodemographic characteristics was also collected. Results: Average stigma score (53.3 ± 13.2) was higher than 50% of maximum attainable score. Caregivers of higher age, female gender, low income, higher education, manual job, rural residence, and those who are single or widowed scored higher in stigma scale. Caregivers with female gender (P = 0.007) and rural residence (P = 0.01) were more likely to have stigma while the perception score was negatively associated (P < 0.001) with stigma score. Conclusion: The study highlighted that health-care providers can play a pivotal role to address caregivers’ stigma in order to alleviate its effect on the course of illness and improve family life.
Keywords: Caregiver, female, India, mental illness, rural, stigma
|How to cite this article:|
Mukherjee S, Mukhopadhyay DK. Stigma towards mental illness: A hospital-based cross-sectional study among caregivers in West Bengal. Indian J Public Health 2018;62:15-20
|How to cite this URL:|
Mukherjee S, Mukhopadhyay DK. Stigma towards mental illness: A hospital-based cross-sectional study among caregivers in West Bengal. Indian J Public Health [serial online] 2018 [cited 2018 May 27];62:15-20. Available from: http://www.ijph.in/text.asp?2018/62/1/15/226629
| Introduction|| |
Stigma is a social construct marked by devaluing a person due to disfigurement or disability to fulfill his/her social role. The process of socio-econo-political marginalization is based on negative attitude and prejudices from labeling and cultural stereotypes of the society/group. Stigma to several diseases including leprosy, HIV/AIDS, and mental illness was noted across the globe.
Worldwide, 450 million people are suffering from mental illness and around 80% of them live in middle- and low-income countries. One-third of the global burden of mental, neurological, and substance-use disorders is contributed by India and China.
In spite of the high burden of mental disorders, globally, around 70% of people with mental illness do not receive any treatment, and evidence suggests that stigma plays a major role in treatment avoidance. Social responses also affect the prognosis of mental illness. Stigma affects not only the people with mental illness but also their families., Caregivers and families play a significant role in care and management of mentally ill persons, particularly in Indian context. Caregivers provide care to their ill relatives at home; participate in decision-making for treatment and rehabilitation. Consensuses among scientific communities are growing on the effects of stigma on lives of individuals with mental illness as well as their families.,, Self-perceived stigma and/or stigmatizing experiences of caregivers might lead to total lack of treatment or undertreatment, deferred referrals, high dropouts, poor adherence, and a poorer rehabilitation.,,
Stigma experienced by the caregivers due to their association with persons with any stigmatized condition such as mental illness is considered “associative/courtesy” stigma. Besides the larger efforts to address the negative views of the public toward the associates of mentally ill persons, i.e., associative stigma, health-care providers can assess and address the self-perceived stigma of the caregivers of people with mental illness during routine clinical interaction.
Therefore, to address the health-care challenges in treatment gap of persons with mental illness, it is imperative to assess the stigma and its correlates among caregivers. In spite of increased awareness and discussion on stigma among caregivers, there are a few studies on the self-perceived stigma among caregivers, particularly in Indian context.,,, Empirical research also reported that the level of stigma and the associated suffering of the people from it vary depending on cultures and its context. Two recent studies from India reported that caregivers of people with schizophrenia experienced a high level of stigma., An earlier study from South India also reported the same. In a study among members of armed forces in India, Pawar et al. found that around one-third of caregivers had negative attitudes toward mental illness. With this perspective, a study was planned with the following objectives.
- To determine the level of self-perceived stigma toward mental illness of caregivers of people with mental illness
- To measure the perception regarding mental illness of caregivers of people with mental illness
- To identify the factors associated with self-perceived stigma of the caregivers.
| Materials and Methods|| |
Study design and setting
A cross-sectional, descriptive study was conducted in a medical college hospital in West Bengal from July 2012 to March 2013.
The study participants were selected from the psychiatry outpatient department (OPD) of the hospital from August to December 2012. Caregivers of persons with clinically diagnosed mental illness and attending the OPD for the first time for treatment were included, provided (s)he is the principal caregiver and within the age group of 18–65 years.
Sample size and sampling procedure
In scarcity of similar studies, assuming the proportion of participants with stigma to be 50%, 95% confidence level, and absolute precision of 7%, the sample size was calculated to be 196. It was rounded off to 200. Days of interview were also chosen randomly. Based on estimated burden of patients attending psychiatric OPD in each day of the week, ten persons per day were selected for interview through systematic random sampling.
Method of data collection
After obtaining written informed consent from the participants, they were interviewed in a separate space in the OPD setting, maintaining privacy and confidentiality. The data collection tool had three sections:
- Structured interview schedule to collect sociodemographic information
- Structured interview schedule to assess their perception regarding mental illness
- Modified Explanatory Model Interview Catalog (EMIC) Stigma Scale.
Sociodemographic characteristics of the caregivers such as age in completed years, gender, duration of schooling, occupation, monthly income, kinship, residence (rural/urban), source of health-related information, and health care were noted.
For assessing perceptions regarding mental illness, twenty questions covering different aspects of the disease (causation, symptoms, and care practices) were framed having one stem and five options starting from definitely to not at all. Definitely and perhaps in positive statements and perhaps not and not at all in negative statements were considered affirmative responses and others including don’t know were considered negative responses. Each positive response was awarded with 1 and each negative response was awarded with 0. The total score for perception was computed by adding up all positive responses. The range of score was 0–20 and higher score indicated more favorable perception toward mental illness. This scale was tested for content validity by seven experts from the field of psychiatry, clinical psychology, public health, and sociology, and Delphi technique was used to finalize the questionnaire.
Similarly, items in EMIC stigma scale were based on Goffman’s concept of spoiled identity. The EMIC scale was considered as locally adapted interview based on concepts that collectively specify an explanatory model. A 12-item EMIC scale, validated by Weiss et al. in Bengaluru (Cronbach’s α = 0.73), was considered most suitable for use in the present study. Each item was rated in a 5-point Likert scale, options being 5 = definitely yes to 1 = definitely no. A total score of caregiver’s perceived stigma was computed by adding up the scores of individual items. The range of score was 12–60 and a higher score indicated higher stigma.
The scale for assessing stigma was validated in different settings in India. The scale for assessing perception was developed and was checked for content validity in the present study. Both the scales were pretested among thirty caregivers of persons with mental illness to check applicability in the present setting. It was noted that both perception scale (Cronbach’s α = 0.89) and stigma scale (Cronbach’s α = 0.85) were internally consistent.
Method of data analysis
Data were double entered in MS excel spreadsheet and checked for consistency. Stigma score and perception score were expressed in the percentage of maximum attainable score. Proportion, mean (±standard deviation [SD]), and median (±interquartile range [IQR]) were used to analyze the characteristics of study participants and distribution of total perception and stigma scores. All categorical variables were dichotomized as shown in [Table 1]. Participants were divided into two groups according to age in completed years based on median value (40 years). Participants who had formal schooling up to 5 years were categorized as “up to primary education” and those with more than 5 years of formal schooling were considered as “beyond primary education.” Occupational status was categorized as manual and nonmanual occupations. Nonmanual occupation included white collar jobs, business, and teaching. Women who were homemakers and not involved in any other wage-earning job were also considered manual workers. For multivariate analysis, caregivers who were female, married and spouse in kinship, having up to primary education, nonmanual occupation and rural residence, aged ≤40 years, and with per capita monthly income (PCMI) > INR 1600 were considered reference category and coded as 0. The other category, in each variable, for example, male gender, unmarried/single, parents/siblings/wards in kinship, education beyond primary level, manual occupation/homemaker, urban/semi-urban residence, age >40 years, and PCMI ≤ INR 1600 was coded as 1. Linear regression was run with stigma score as dependent variable and perception score along with dichotomized categorical variables as independent variables.
|Table 1: Descriptive statistics of stigma and perception score according to the characteristics of study participants (n=198)|
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The study obtained permission of the Institutional Ethics Committee of the concerned medical college, and ethical standards for a descriptive epidemiological study were strictly adhered to.
| Results|| |
Among 200 participants, two filled-up questionnaires were discarded for data inconsistency. Out of 198, approximately two-thirds were female (65.7%), resident of urban/semi-urban areas (67.7%), and were currently married (63.1%). Majority of the participants were either manual workers or homemakers (71.7%) having PCMI ≤ INR 1600 (64.6%).
On further analysis, it was noted that the mean (± SD) age of the respondents was 39.7 (±12.2) years. On an average, the duration of formal education of the participants was 6.5 (±5.0) years; 13.1% were illiterate and 15.7% were graduate. The average PCMI of the family of the participants was INR 1533.3 (±518.0).
The mean (± SD) and median (± IQR) of the stigma score as perceived by the caregivers towards mental illness were 53.3 (±13.2) and 51.7 (±18.3), respectively. Similarly, the corresponding figures for perception score were 59.3 (±11.4) and 60.0 (±15.0), respectively. [Table 1] shows that stigma was higher among participants aged >40 years, of female gender, single/widowed, having less income, with higher education, manual workers, and those residing in rural areas than their counterparts as evident from mean stigma score. There was almost no difference in mean perception score based on sociodemographic characteristics. Normality of the distribution of both the scores was tested with Shapiro–Wilk test and found it to be nonsignificant.
[Table 2] shows that, after adjusting for the sociodemographic variables in multiple linear model, the higher the appropriate perception (β = −0.425, t = −6.579, and P = 0.000) expressed in perception score, the lower would be the stigma (expressed in stigma score). Similarly, participants with male gender were less likely to have stigma than females (β = −0.177, t = −2.717, and P = 0.007), while those of rural residence (β = 0.170, t = 2.604, and P = 0.010) were at higher risk of having stigma than those of urban/semi-urban areas. Normality of distribution, no multicollinearity (variance inflation factor = 1.035–1.226 and tolerance = 0.816–0.963), significant ANOVA, and independence of errors (Durbin–Watson = 2.1) were tested and the results substantiated the use of linear model.
|Table 2: Linear regression showing association of stigma score with perception score and other sociodemographic variables (n=198)|
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| Discussion|| |
In the present study, the mean stigma score was more than 50% of maximum attainable score and almost half of the participants scored above it (as evident from median score), even one-fourth of the participants scored around 60% of maximum score and above. These figures signified a high level of stigma among caregivers of persons with mental illness. The level of stigma perceived by a group of caregivers in Bengaluru using the same scale was lower than that of the present study. In a study in Chennai, the average score was 44% of the maximum score and only 38% scored over it. As EMIC did not provide any opportunity to categorize persons as having stigma or not, in the absence of any standard cutoff, it was difficult to compare results with other studies that used different tools to assess stigma. In a study in Morocco, most of the respondents reported to have stigma and 86.7% reported hard life. Shibre et al. reported that 75% of Ethiopian caregivers either perceived stigma or experienced stigma. A number of sociodemographic variables and perceptions regarding mental illness of the caregivers were studied to find out association between those variables and stigma. After adjustment for these variables, perception score, gender, and area of residence were found to be significantly associated with stigma. Thara and Srinivasan found religion as the only sociodemographic variable which was significantly associated with stigma among caregivers, although stigma score was higher among females and younger age group. Charles et al. found that male gender, literacy, and rural residence were associated with stigma.
Perception about the mental illness, its causation, signs and symptoms, and inclination toward modern methods of treatment were negatively associated with perceived stigma of caregivers in the present study. Chan explained that lack of knowledge and skill necessary for taking care of the mentally ill relatives made the caregivers unable to cope with caring role and responsibilities. Griffiths et al. also found that knowledge on the mental illness and its signs and symptoms was associated with lower stigma, whereas in Germany, Angermeyer and Matschinger noted no significant association., This notion is also supported by an early Indian study. Thornicroft et al. viewed that stigma in relation to mental illness blossoms out of ignorance/misinformation, i.e., lack of “mental health literacy.” In exploring the barriers for seeking health care, it was noted that the family members get stigmatized due to negative stereotype of mental illness. This stereotypical attitude might be addressed with focused communication between health-care providers and family members.
The results of studies on relation between gender and stigma due to mental illness were inconsistent; although in majority of the studies, a significant association between stigma and gender was noted. In the present study, almost two-thirds of the caregivers were females and female caregivers had significantly higher stigma than their male counterparts as also found in other studies.,, Contrasting results are also published., In Indian social context, women are socialized stereotypically as dependent and are responsible for household activities including taking care of family members. They are usually the principal caregivers for ill family members. Low social status of the women along with low social support might result in high subjective burden which in turn leads to high perceived stigma and loss of self., Gonzalez et al. explained that high social role expectations of females were associated with stigma. They felt more stigma if their family member, especially male, did not live up to their social role expectations.
Caregivers from rural areas felt higher stigma than their urban/semi-urban counterparts in the present study, although the research findings in this aspect are contradictory. Stewart et al. reported that higher stigma among older adults of rural area than their urban counterparts might be attributed to the beliefs, values, and other structural factors of rural areas. Studies in Ethiopia and China noted higher stigma among rural caregivers where supernatural explanation of mental illness contributed mostly to stigma., Jadhav et al. found greater stigma and punitive actions among rural Indians, particularly among rural manual workers, but this association was complex. Urban societies might encourage more liberal attitude toward mental illness although they showed their unwillingness to work with a person having a history of mental illness. On the other side, people with mental illness are generally absorbed in less skillful jobs in rural societies. Social tolerance among urban caregivers may be unique to Bengali middle-class cultural notion of a romanticized, eccentric but meaningful label to mental illness which permits greater empathy.
Although it was proposed that higher educational status was associated with higher stigma due to perceived interferences in social interactions and social role activities, the present study failed to elicit such association., Significant association of stigma with age, kinship, marital status, income, or occupation was not found as well. Higher proportion of participants from lower socioeconomic status in the present study might have masked some of the relations.
This study was a hospital-based, cross-sectional study with a small sample. The study results are needed to be interpreted in light of those factors.
The present study showed considerable level of self-perceived stigma among caregivers of people with mental illness. Three factors of the caregivers, namely, gender, place of residence, and perception toward mental illness were found to be significantly associated with stigma. The present study pointed toward the opportunity of addressing and shaping the perceptions of caregivers to mitigate stigma among them, with a focus to the vulnerable groups such as females and rural residents. In the Indian context, policies and programs for effective health communications with the caregivers may be designed to include them in standard care protocols. The study emphasized the need of greater collaboration between health-care providers and caregivers in order to make them mental health literate and address their prejudices which in turn would reduce their stigma.
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[Table 1], [Table 2]