Indian J Lepr 2008, 80 : 167-174 Original Article

Extent and Correlates of Leprosy Stigma in Rural India

 
PSS Rao*, MS Raju**, A Barkataki***, NK Nanda****, Sandeep Kumar*****
 

* PSS Rao, MA, MPH, Dr PH, Research Coordinator, Research Resource Centre, The Leprosy Mission Trust India, New Delhi
** MS Raju, PhD, Social Scientist, Research Resource Centre, The Leprosy Mission Trust India, New Delhi
*** A Barkataki, DTM & H, Superintendent, The Leprosy Mission Community Hospital, Faizabad (UP)
**** NK Nanda, DTM & H, Superintendent, The Leprosy Mission Community Hospital, Purulia(WB)
***** Sandeep Kumar, MD, Superintendent, The Leprosy Mission Community Hospital, Champa(CG)

Abstract

Representative random samples of leprosy patients (599) and community members (2399) from rural areas of Uttar Pradesh, West Bengal and Chhattisgarh states of India were interviewed by trained field investigators during 2006, using two separate 5-point scales to assess the extent and correlates of leprosy stigma. Varying degrees of stigma were faced by the affected persons within the family and outside in all the States, restricting their social participation and sharing of common facilities. The community members also confirmed the existence of a high level of stigma. Low educational and economic status, older age-groups, and presence of deformities enhance both perceived and enacted stigma.
Key words : Stigma, Leprosy, Rural India

Introduction

Leprosy is as much a social problem as a medical one and stigma towards persons affected with leprosy is as old as the disease itself (CSSRL 1999, Dongre 2003). The discovery over a hundred years ago by Hansen of the Mycobacterium leprae as the causative organism (Bryceson and Roy 1990) and subsequent advances in drug therapy and medical management (Bainson and Borne 1998) seems to have not much impact on the social perceptions of leprosy, which is still looked upon as an undesirable and incurable disease, caused by divine punishment for past sins (Mutatkar 1979, Heijnders 2000). Social stigma interferes with early reporting and adherence to treatment, thereby nullifying the advantages of modern therapy (Kannan and Sivaram 1992, Kumaresan and Maganu 1994, Kaur and Anjali 2003, WHO 2006). Even footwear developed for anesthetic feet had to be changed due to the stigma attached (Kulkarni 1990), although reconstructive surgery restoring cosmetic changes lead to better social acceptance (John et al 2005). There is a great need to assess the extent of leprosy stigma and its correlates in order that more focused activities can be undertaken to reduce and eradicate it (van Brakel 2003).

PSS Rao et al

To help initiate an action research project using community-based approaches, a baseline survey on leprosy stigma was done in 3 endemic states of India during 2006. Some of the major findings are presented in this paper and possible future lines of action discussed.

Material and Methods

Three geographically distinct rural blocks were randomly chosen from the districts in which the leprosy mission hospitals were located, choosing one each from Uttar Pradesh, West Bengal and Chhattisgarh states. From each block, a stratified random sample of 20 villages were chosen. All known leprosy affected persons were included for the sample of patients. From each selected village, a systematic random sample of households were selected for the survey of community members.
A special performa was designed separately for the patients and for the community members to ascertain the perception and enactment of stigma at the family level, in the society and at work place. On a 5-point scale, the respondents were asked whether they strongly agree, agree, neutral, strongly disagree or disagree to each statement on participation restrictions, social interactions, sharing of common facilities and services and other discriminations. Details of each respondent in terms of socio-demographic characteristics were also collected. Postgraduates in social sciences were recruited, trained and located in the rural blocks to facilitate better rapport and to carry out in-depth interviews to collect the necessary data. Field supervisors did a sub-sample check on the reliability and validity of the answers given by the respondents. Data were entered on microcomputers on Excel sheets, checked and analysed using SPSS software.

Results

The perception and manifestation of stigma within the family, in the society and in the work environment are described in tables 1, 2 and 3. The maximum stigma is noted for not allowing leprosy afflicted to participate in religious rituals(12%), with Chhattisgarh showing the highest (17%) and West Bengal the lowest (7%). Older patients, those with low education and belonging to the backward class and with deformity revealed the highest stigma. There were no differences by gender. The perceptions of the community in terms of avoiding direct contact with leprosy affected persons are shown in table 4 and table 5. Employment and selling of food items had the maximum stigma (80%), and were generally high in all the states, with no significant differences by gender, age, education, occupation or caste. About 40% are against social contacts, such as making friendships, allowing healthy children to play with affected persons or in restricting participation in religious or social functions. While there were no differences by gender, younger and those in higher socioeconomic classes seem to show greater stigma.

Discussion

Goffman (1963) defines stigma as "a spoilt identity of the affected person", which seems true in the case of leprosy, despite wonderful treatments with MDT and major advances in reconstructive surgery (WHO 2006). This study has clearly brought out
the many faces of leprosy stigma in
terms of various degrees of restrictions, discrimination and isolation of an affected person to the extent that even the family would rather disown the person. Leprosy is fully curable with no residual disabilities when the affected person reports early and completes the required multidrug therapy (Noordeen 2005). However, when treatment is delayed, often due to concealment and other perceived stigma, till visible disabilities occur, secondary problems occur and life-

Extent and Correlates of Leprosy Stigma

 

long care become imperative, and the image of leprosy as a disabling disease persists (Heijnders 2004, Rafferty 2005). Thus, a vicious cycle is perpetrated, which much be attacked vigorously.
The findings reveal significant correlations with several demographic and social factors, and it is important to note, therefore, that stigmatization is a process, subject to change over time within the same community (Kleinman 1980). Thus, community-intensive approaches are needed in education, motivation and dispelling the continuing myths and images of leprosy (Dongre 2003)
Pioneering efforts in leprosy has been almost exclusively confined to affected persons and their families. This was essential, but the time has come when greater emphasis is needed in tackling negative perceptions to promote early treatment, thereby virtually eliminating any residual disabilities in affected persons, thus breaking the link between leprosy and deformity (Hyland 1993). With integration of leprosy services, with medical treatment now available freely at any general health setup (WHO 2006),
Extent and Correlates of Leprosy Stigma
health service system must now be geared to focus on preventing social disabilities in addition to counselling patients to be regular in their treatment. Thus the strategy on leprosy stigma reduction should be two­fold in changing the mindset of not only the public, but that of the service providers. A simple social grading similar to the WHO grading of physical disability can be done when the patient first registers for treatment and repeated till RFT. This grading will be 0: when the patient stays with own family with no discriminations, 1: when some restrictions are placed but the patient continues to stay

with family and 2: when the affected person is asked to leave the family. No doubt, rehabilitation activities can continue, but why not prevent de-habilitation in the first place ! The challenge then to the health staff will be to maintain the patient at social grade 0, and patients report early enough with WHO grade 0, the image of leprosy as a disabling disease will undergo a drastic change, contributing to reduction of stigma.

Extent and Correlates of Leprosy Stigma


The findings from the present study provided a number of leads for action­programmes conceived and implemented by the communities themselves using social marketing techniques (Wong 2002). The Government of India and the World Health Organization must formulate practical operational guidelines for these social dimensions as well, to march forward to eradication of leprosy.

Acknowledgements

We are grateful to the Leprosy Mission for their generous support to this project. We thank the District and Block officials, the PHC staff and the Superintendents of the TLM hospitals for their help in initiating this study. Finally, we thank the field investigators Messrs- Pradeep Kumar Gupta and Mahip Kumar Pandey (Faizabad); Deep Chander Kujur and Bhupender Kaushik (Champa); Mahananda Prasad and Sk Faizul Ali (Purulia), and the respondants for their sincere contributions to the data on stigma levels.

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