|Year : 2022 | Volume
| Issue : 2 | Page : 258-264
Assessing the prevalence and socio-demographic determinants of the unsolved problem of perceived social stigma: A study among leprosy-affected persons in North Bengal, India
Alapan Bandyopadhyay1, Sampriti Samanta1, Abhijit Mukherjee2, Sharmistha Bhattacherjee1
1 Department of Community Medicine, North Bengal Medical College and Hospital, Sushrutanagar, Darjeeling, West Bengal, India
2 Department of Community Medicine, Nil Ratan Sircar Medical College and Hospital, Kolkata, West Bengal, India
|Date of Submission||31-Jan-2022|
|Date of Acceptance||23-Feb-2022|
|Date of Web Publication||30-Jun-2022|
Department of Community Medicine, North Bengal Medical College and Hospital, Sushrutanagar, Darjeeling, West Bengal
Source of Support: None, Conflict of Interest: None
Background: Leprosy has been affecting the human race since millennia, characterized by widespread, slow-healing lesions that lead to severe physical deformities. Along with its communicability, leprosy patients have therefore been subjected to widespread social stigma all over the world. Even though a largely effective national program has reduced the incidence of cases substantially in India, stigma has persisted. The present study aimed to assess the perceived stigma among leprosy patients living in rural areas and receiving care in a rural leprosy clinic of Northern West Bengal, India and to determine different factors associated with it. Materials and Methods: A cross-sectional study was conducted among 61 leprosy patients over the month of January 2021. The Explanatory Model Interview Catalog (EMIC) stigma scale was used to measure the perceived social stigma. Descriptive statistics and a multivariable linear regression analysis were used to present and explain the data. Results: Illiteracy and low socio-economic status were prevalent among the patients. The perceived stigma scores ranged from 4 to 35, with a mean of 23.36 ± 9.13. When adjusted for predictor variables such as age, sex, marriage, education, and socio-economic status, it was seen that perceived social stigma increased significantly (P-value=0.029) with increasing age. Female sex (P-value=0.022), illiteracy (P-value=0.017), and Grade 2 disability (P-value=0.009) were also significantly associated. Conclusion: The study observed that the overall perceived stigma levels among leprosy patients in this region were still high. This signals an enduring persistence of the problem. It is of urgent need to develop and implement stigma reduction strategies.
Keywords: India, leprosy, rural health, social stigma
|How to cite this article:|
Bandyopadhyay A, Samanta S, Mukherjee A, Bhattacherjee S. Assessing the prevalence and socio-demographic determinants of the unsolved problem of perceived social stigma: A study among leprosy-affected persons in North Bengal, India. Med J Babylon 2022;19:258-64
|How to cite this URL:|
Bandyopadhyay A, Samanta S, Mukherjee A, Bhattacherjee S. Assessing the prevalence and socio-demographic determinants of the unsolved problem of perceived social stigma: A study among leprosy-affected persons in North Bengal, India. Med J Babylon [serial online] 2022 [cited 2022 Aug 13];19:258-64. Available from: https://www.medjbabylon.org/text.asp?2022/19/2/258/349478
| Introduction|| |
From the first recorded case dating back to ancient Egyptian civilization in 1550 BCE to Dr. Amauer Hansen’s discovery of the lepra bacilli in 1873, leprosy was known to be incurable. It was considered the curse of Gods, inflicted upon the sinners, marking them with severe deformities and disfigurement. The social stigma surrounding leprosy has been so pervasive that the term “leper” has become synonymized with social pariahs. The perceived stigma experienced by the sufferer often outweighs the burden that the disease brings by itself, drastically affecting a patient’s life and livelihood. Patients suffering from the disease are often prevented from holding jobs, attending social and religious events, and, in most cases, excluded from interpersonal and marital relationships. Thus, leprosy is a social disease as much as it is an infectious one.
To combat the burden leprosy and the social stigma toward it, countries around the world have focussed on developing and implementing national health programs. Of note is the advent and massive push for the Multi-Drug Treatment Regimen (MDT), approved and recommended by the World Health Organization in 1981. By 2006, all but six countries had achieved national elimination of the disease (<1 case per 10,000 population).
India has had a National Program dedicated to combating leprosy since 1955. Starting as the National Leprosy Control Program, the effort has seen various iterations over the years and has achieved many milestones with respect to combating the disease. Through its efforts, the National Leprosy Eradication Program has maintained national elimination, keeping incidence <1/10,000 population since 2005. However, as a side effect, these achievements have also led to a dramatic decrement in the political will and efforts toward strengthening the program,, with focus primarily being on reaching the elimination targets. Combined, these factors have led to the aspect of social stigma mitigation being sidelined in the national conversation regarding leprosy. Especially in a country with historically high levels of stigma surrounding leprosy, where patients have been forced to live as outcasts in poverty and squalor, this has therefore resulted in a dearth of literature exploring the prevalence of perceived stigma among the affected in the recent years. Mitigation and elimination of stigma require an intensive, continuous, integrative, and long-term effort. An exploration to the stigma and its associated factors in the backdrop of the current efforts to eradicate the disease is of paramount importance not only to assess the success of the public health efforts but also to properly rehabilitate the patients into normal, productive life.
Aim of the study
The current study was undertaken with an aim of assessing the perceived stigma associated with leprosy still persisting among patients living in rural areas and receiving care in a rural leprosy clinic of Northern West Bengal, a high-prevalence state of India, and of ascertaining the factors associated with higher levels of perceived stigma, if found.
| Materials and Methods|| |
Study type and design
The study was an observational descriptive study with cross-sectional design.
Study setting and population
The study was done in a leprosy clinic of the Darjeeling district of West Bengal, India during the month of January 2021, conducted among the patients who availed treatment from there in both out-patient and in-patient settings. Darjeeling district is a hilly district of Eastern India, consisting of a significant tribal population (8%) who have historically been socio-economically under-privileged and live in many small, and often remotely located, villages dotted around many tea gardens of the district. The study setup catered to patients who hailed from those villages and were brought there either as presumptive or as laboratory confirmed cases by volunteers as well as healthcare workers working there. It has both inpatient and outpatient departments in which diagnostics as well as treatment-related care was provided to the patients.
A thorough records review showed that the clinic provides outdoor and inpatient treatment and care for an average of 56 patients per month. To that effect, a complete enumeration of all patients who were availing either outpatient or inpatient care at the leprosy clinic and provided written informed consent to participate in the study during the month of February 2021 was done. A total of 64 patients came to the clinic for treatment, of whom 3 (2 women, 1 man) refused to provide consent to participate in the study and were therefore excluded. Thus, the final sample size for the study was 61 participants.
Data collection tools and techniques
Data were collected using a pre-designed questionnaire. Section I of the questionnaire consisted of questions regarding socio-demographic characteristics of the participants, and Section II consisted of the 15-question Exploratory Model Interview Catalogue Stigma Scale (EMIC-SS) for Leprosy. The questions of this questionnaire correspond to the various situations that patients of leprosy feel stigmatized and assess both the felt as well as the enacted social stigma perceived by the patients. The EMIC-SS for Leprosy contains 15 questions with a 4-point scoring system. Each question can have four possible responses (Yes, Possibly, Uncertain, No) which are assigned the scores of 3, 2, 1, and 0, respectively. The only exception is question no. 2 (“Have you discussed this problem with the person you consider closest to you, the one whom you usually feel you can talk to most easily?”), for which a reverse marking (Yes = 0, Possibly = 1, Uncertain = 2, and No = 3) is used. The EMIC-SS has been used extensively to measure perceived stigma among leprosy-affected people, scoring them on a scale of 0–45, with higher score corresponding to higher levels of stigma.
After the collection of the data, it was checked for consistency and completeness and entered in a spreadsheet. Descriptive statistics frequencies and cross tabulations were used to describe the socio-demographic characters of the participants and the stigma perceived by them. Multivariable linear regression was done to determine the factors associated with perceived stigma. A P-value of less than 0.05 was taken as statistically significant.
Permission was also obtained from the authorities of the Leprosy Clinic in which the study was conducted. A written informed consent was obtained from each of the study participants before administering the questionnaire. Details of the participants of the study were anonymized during analysis. An Ethics Committee clearance was obtained from that of the North Bengal Medical College and Hospital [IEC/NBMC/2020–21/10].
| Results|| |
Of the participants, 33 (54.09%) were men, and the rest were women. The mean age of the participants was 49.94 ± 17.94 years. Hindus were the most numerous (50.82%), followed by Muslims and Christians. Most of the participants were currently married or had been previously married (70.51%). It was seen that both illiteracy and low socio-economic status were very common, with 72.14% of the participants being illiterate and 90.16% hailing from lower socio-economic status families as per the modified BG Prasad scale (AICPI January 2021) [Table 1].
Of the 61 participants of the study, 26 (42.62%) were receiving care in the in-patient setup, whereas the rest were OPD attendees. The mean stigma score of the participants was 23.36 ± 9.13, with a minimum of 4 and a maximum of 35. It was further seen that 36 (59.02%) of the participants scored 25 and above on the perceived stigma scale out of a total of 45, indicating a high prevalence of the condition.
An important finding of the study was that even though perceived stigma was expectedly higher among in-patients (25.88 ± 6.98) when compared with that of the OPD attendees (21.89 ± 10.20), the difference was not statistically significant (P-value = 0.091). However, a significant increasing trend of perceived stigma was observed with respect to the type of WHO Grade disability of the patients (TJT = 960, z = 4.921, Kendall’s tau-b correlation coefficient= 0.506, P-value ≤ 0.001). It was seen that 28 (45.90%) of the participants were suffering from WHO Grade 2 disability and 19 (31.15%) from Grade 1 disability and the rest did not have any anesthesia or visible damage (Grade 0). The median perceived stigma scores of patients with Grades 0, 1, and 2 were 17, 21, and 31.5, respectively.
The current study found that most of the patients suffering from leprosy are shamed by their neighbors and communities due to their condition (Yes = 72.13%) and have been asked to stay away from work or other social activities (Yes = 68.85%). Most of the participants think that their peers think less of them, and therefore have voluntarily stayed away from social gathering and work (Yes = 88.52%). In contrast, majority of the participants had no problems discussing their ailment with their loved ones (Yes = 81.96%) and did not have any problems in their marriage or getting married (No = 79.51%) [Figure 1]. This finding was an important one, as participants who answered “No” or ‘Uncertain’ to question no. 2 (Have you discussed this problem with the person you consider closest to you, the one whom you usually feel you can talk to most easily?) had a mean stigma score of 33.18 ± 1.66, which was significantly higher than those who responded that they could talk about the disease with their loved ones (21.48 ± 8.73) (P-value = 0.00046).
|Figure 1: Percentage of participants answering yes or possibly to the EMIC-SS items (n = 61)|
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Determinants of higher perceived stigma among participants were estimated using a multivariable linear regression performed with total stigma score as the outcome variable and age, sex, education, marital status (ever married or never married), socio-economic status, type of disability, and mode of care (whether availing outpatient or inpatient care) as predictor variables. The model yielded an adjusted R2 value of 0.765. It was seen that when adjusted for other independent variables, increasing age was significantly associated with increased perceived stigma (P-value = 0.029). Although there were no significant differences in the perceived stigma scores between patients with WHO grade 0 and grade 1 deformities (P-value = 0.692), participants with Grade 2 disabilities felt significantly more stigmatized when compared with their counterparts (P-value = 0.009). Statistically significant positive associations were also observed for female sex (P-value = 0.022) and illiteracy (P-value = 0.017). No statistically significant associations were observed with respect to the participants’ marital status, socio-economic status, and mode of care and their perceived stigma [Table 2].
|Table 2: Socio-demographic determinants of increased perceived social stigma among the participants (n = 61)|
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| Discussion|| |
The high prevalence of perceived stigma found in this study reinforces the assumption that the stigmatization of sufferers has persisted even after decades of collective action against leprosy. While the amount of stigma experienced by the participants was expectedly more among those receiving in-patient care than those receiving out-patient care, the non-significance of the differences points to the fact that the diagnosis of leprosy, whether in its early or late stages, is enough to lead to high levels of stigma among the sufferers. These findings underline social stigma and discrimination reduction and mitigation strategies to be an important aspect of control measures against a disease such as leprosy.
The high perceived stigma among the participants might be due to the fact that the control programs of the disease focus so much on reducing the burden of the disease that the aspect of changing the community attitudes toward the disease through persistent and long-term communication and education campaigns remains largely ignored. Although this approach might lead to a reduced incidence of the disease, the quality of life of those who have already suffered/are suffering remains the same. Another contributing factor to this observed stigma burden might be the demographic makeup of the population of the study area, which has a sizeable tribal and lower socio-economic background populace. These people are chronically underprivileged and have limited access to health care, leaving them vulnerable to communicable diseases such as leprosy and furthers social problems like stigma.,
Felt stigma, or the shame and expectation of discrimination that patients feel will be directed at them, can be a very important factor that prevents patients from seeking help. This was evident in the current study, as a high percentage of participants responded that they would not want others to know about their disease and had decided on their own to stay away from social programs and work. Enacted stigma or the unfair treatment experienced by the patients from others was also high; most of the participants were asked to stay away from social situations and were made to feel ashamed about their disease by their peers and community members. Although the disfiguring and contagious nature of leprosy predisposes the infected to isolate themselves, this should be mitigated by conscious and cooperative support by both the patient’s family and the community members, guided by healthcare workers and experts working in the field. Failure of accomplishing this can lead to persistence of the problem of stigma and increased discrimination, as was observed in this particular study.
One of the important findings of the study was that a much lesser percentage of the participants felt that they could not talk with their loved ones about the disease or had problems in their marriage or getting married due to it. Family support is crucial as it can significantly lessen the perceived stigma among patients. The current observations support this assertion, as the participants who could not talk about the disease with their loved ones had substantially higher perceived stigma score when compared with their peers.
The study found three key factors, namely, age, sex, type of disability, and illiteracy, which were predictors of increased stigma among leprosy sufferers. Stigmatization, according to Kleinman, is a process that is amenable to change over time and within the same community. A community may change its attitude toward a disease and its sufferers as a response to better education, exposure to improved health care, and due to government and the community members themselves. A significant positive correlation of increased stigma with age found in this study can be explained from this perspective. Older age has been associated with increased stigmatization in several different studies done a priori., However, this association might not be entirely attributable to the age of the participants as it can be due to the specific time period in which the socio-cultural attitude toward leprosy patients was much more adverse than now. Significant gains in the control of leprosy in India are quite recent, with most of the advances made in the last two decades. So, it follows that people who contracted the disease earlier had been subjected to much higher levels of discrimination and stigma than their younger counterparts.
As expected, perceived stigma increased as the disability of the participants increased, consistent with findings of a priori research., However, one of the more interesting findings was the non-significant differences in perceived stigma scores between participants suffering from no disabilities (Grade 0) and those with Grade 1 disabilities. This might be due to the fact that these patients did not develop the visually striking deformities of the disease, and although they were stigmatized, it was to a lesser extent than those developing Grade 2 disabilities.
Women have been disproportionately affected by leprosy as well as its stigma everywhere in the world. In India, women face an even greater threat, owing to their socially inferior status in the community, especially in the underprivileged sections of the society. Women affected by leprosy are often expelled from their families, barred from seeing their children, and prevented from reporting their disease or accessing health care by their family members. Significantly high levels of stigma among women and the socio-economic hardships faced by them have been reported since 1997. The fact that this study observed a similar scenario among the participants indicates that the overall achievements of leprosy-related stigma control measures are yet to reach women as extensively as required and remains a significant problem that needs urgent attention at the local as well as national levels.
Illiteracy leads to a lack of knowledge about the nature, communicability, and prognosis of leprosy and therefore feeds into the concealment, shame, and perceived stigma in the affected. The current study found that people who were illiterate were significantly more likely to suffer from leprosy-related stigma when compared with people who received some form of formal education. This is in line with other studies done in India and abroad., The observation that there was not a significant difference in the stigma scores among the participants having primary, high school, and graduate levels of education indicates that even the most basic of education can go a long way in alleviating the perceived stigma among patients by increasing both the overall knowledge about the disease process and ability to resist the negative stereotypes that are associated with the disease.
| Conclusion|| |
The current study was conducted to ascertain the levels of perceived stigma in leprosy-affected patients. It was seen that the overall stigma levels were quite high, with high percentage of patients experiencing both felt and enacted stigma. It was also seen that age, female sex, Grade 2 disability, and illiteracy were significantly associated with increased perceived stigma among the patients. A targeted approach in mitigating this particular problem is of immediate need. Identification of populations at risk, especially those from socio-economically weaker sections of the population, should be taken into the loop in controlling this problem. Setting up of community-based self-help groups, integrative education, and health campaigns and increased focus on elimination of stigma are key elements that can enhance the achievements of the National Leprosy Eradication Program and help achieve the goals of a leprosy-associated stigma-free India.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Hussain T Leprosy and tuberculosis: An insight-review. Crit Rev Microbiol 2007;33:15-66.
Burathoki K, Varkevisser CM, Lever P, Vink M, Sitaula N Gender, leprosy and leprosy control: A case study in the far West and Eastern development regions, Nepal. Amsterdam: SAfAIDS; 2004. p. 120.
Hornby AS, Bradbery J, Deuter M Oxford Advanced Learner’s Dictionary [Internet]. Oxford: Oxford University Press; 2021. Leper. Available from: https://www.oxfordlearnersdictionaries.com/definition/english/leper
. [Last accessed on March 5, 2021].
Charoon P Leprosy Profile. Bangkok: Leprosy Division; 1995.
Scollard DM, Adams LB, Gillis TP, Krahenbuhl JL, Truman RW, Williams DL The continuing challenges of leprosy. Clin Microbiol Rev 2006;19:338-81.
World Health Organization. Global Leprosy Update, 2013; reducing disease burden. Weekly Epidemiol Rec Relevé épidémiologique hebdomadaire 2014;89:389-400.
Rao PN, Suneetha S Current situation of leprosy in India and its future implications. Indian Dermatol Online J 2018;9:83-9.
Sachdeva S, Sood AK Leprosy elimination monitoring (LEM) in India: A novel exercise of monitoring, learning, and capacity building. Indian J Community Med 2014;39:59-62.
Lockwood DN, Shetty V, Penna GO Hazards of setting targets to eliminate disease: Lessons from the Leprosy Elimination Campaign. Br Med J 2014;348:g1136.
Smith CS, Noordeen SK, Richardus JH, Sansarricq H, Cole ST, Soares RC, et al
. A strategy to halt leprosy transmission. Lancet Infect Dis 2014;14:96-8.
Cross H, Choudhary R STEP: An intervention to address the issue of stigma related to leprosy in Southern Nepal. Lepr Rev 2005;76:316-24.
Directorate of Health Services. National Leprosy Eradication Program (NLEP). [Internet]. Thiruvananthapuram: Directorate of Health Services; 2021 [cited October 20, 2021]. Available from: https://dhs.kerala.gov.in/wp-content/uploads/2021/06/website-17.2.pdf
Government of India. Prospective planning division. Planning Commission, 2012. Report of the expert group to recommend the detailed methodology for the identification of families living below poverty line in the urban areas. New Delhi: Planning Commission; 2012; cited October 5, 2021. Available from: http://planningcommission.nic.in /reports/genrep/rep_hasim1701.pdf
Vorend C, Stevelink S, Rensen C Guidelines to Reduce Stigma: How to Assess Health Related Stigma. London/Amsterdam: The International Federation of Anti-Leprosy Associations (ILEP) and the Netherlands Leprosy Relief (NLR); 2011. p. 11-45.
Debnath DJ, Kakkar R Modified BG Prasad socio-economic classification, updated—2020. Indian J Comm Health 2020;32: 124-5.
Brandsma JW, Van Brakel WH WHO disability grading: Operational definitions. Lepr Rev 2003;74:366-73.
Katkar D, Mote BN, Adhav A, Muthuvel T, Kadam S Epidemiological perspective of National Leprosy Eradication Programme in Maharashtra: Focusing on “tribal hot-spot” of tribal district. Indian J Community Med 2017;42:174-6.
Sermrittirong S, Van Brakel WH, Bunbers-Aelen JF How to reduce stigma in leprosy—A systematic literature review. Lepr Rev 2014;85:149-57.
Govindharaj P, Srinivasan S, Darlong J Quality of life of persons affected by leprosy in an endemic district, West Bengal, India. Indian J Dermatol 2018;63:459-64.
Gray AJ Stigma in psychiatry. J R Soc Med 2002;95:72-6.
Gammon J, Hunt J, Musselwhite C The stigmatisation of source isolation: A literature review. J Res Nurs 2019;24:677-93.
Yusuf A The effect of individual, family and environmental factors on family stigma with leprosy. Adv Social Sci Educ Human Res 2017;98:153-7.
Kleinman A Patients and Healers in the Context of Culture: An Exploration of the Borderland Between Anthropology, Medicine, and Psychiatry. Orlando: University of California Press; 1980.
Kaehler N, Adhikari B, Adhikar B, Raut S, Marahatta SB, Chapman RS Perceived stigma towards leprosy among community members living close to Nonsomboon Leprosy Colony in Thailand. PLoS One 2015;10:e0129086.
Luka EE Understanding the stigma of leprosy. South Sudan Med J 2010;3:45-8.
Kollur LR Conquering leprosy—Achievements of National Leprosy Eradication Programme with experience at national and state level. Nat J Community Med 2014;5:490-4.
Adhikari B, Kaehler N, Chapman RS, Raut S, Roche P Factors affecting perceived stigma in leprosy affected persons in Western Nepal. Plos Negl Trop Dis 2014;8:e2940.
Nardi SM, Paschoal VD, Zanetta DM Social participation of people affected by leprosy after discontinuation of multidrug therapy. Lepr Rev 2011;82:55-64.
Varkevisser CM, Lever P, Alubo O, Burathoki K, Idawani C, Moreira TM, et al
. Gender and leprosy: Case studies in Indonesia, Nigeria, Nepal and Brazil. Lepr Rev 2009;80:65-76.
Pramanik R, Skoda U, Gizy L Ironing out the creases: Leprosy stigma among Dalit women of Sambalpur City of Western Odisha, India. Vulnerability Marginal Culture 2018;1:221-36.
Le Grand A Women and leprosy: A review. Lepr Rev 1997;68: 203-11.
Rao PS, Raju MS, Barkataki A, Nanda NK, Kumar S Extent and correlates of leprosy stigma in rural India. Indian J Lepr 2008;80:167-74.
Das MK, Dasgupta A, Das S, Kumar A, Biswas D Conceptualization and quantification of perceived stigma: A study among leprosy affected persons in a block of Purulia District, West Bengal. Intl J Health Sci Res 2015;6:47-52.
[Table 1], [Table 2]