projects 2008-2012

Socio-cultural features and stigma of leprosy for treatment &control in general health services in India; cultural epidemiological Multi-centric study of the ICMR task force on leprosy

Principal Investigator Dr. Vanaja P Shetty

Participating centers National Institute of Epidemiology (ICMR), Chennai, Tamil Nadu (NIE)

Maharashtra Association of Anthropological Sciences – Centre for Health Research and Development, Pune, Maharashtra (MAAS)

Regional Medical Research Centre (ICMR), Bhubaneswar, Odisha (RMRCB)

Regional Medical Research Centre – North East (ICMR), Dibrugarh, Assam (RMRCNE)

Rohilkhand Medical College and Hospital, Bareilly, Uttar Pradesh (RMCH)"

Project team Ms. Anagha Pradhan, Ms; Rashmi, Ms. Vrushali, Ms. Amrapali, Ms. Poonam assisted by Dr. Sheela Rangan, Consultant (MAAS) and Prof. Mitchell Weiss (Swiss TPH, Basel)

Funder Indian Council of Medical Research (ICMR)

Duration January 2012 to January 2014

Budget Rs.28.64 Lakhs


This multi-centric study in India involving 6 sites is coordinated by National Institute of Epidemiology (NIE), Chennai

Understanding socio–cultural features and stigma associated with leprosy is crucial in the context of primary health care system based leprosy control programme. This ICMR supported multi-centric study used EMIC modeltoexplore perceived and experienced stigma for leprosy and other conditions viz. tuberculosis, malaria and skin conditions with following objectives.


  • Clarify relevance of Socio-cultural features of experience and meaning of illness and the current impact of stigma between leprosy and other health problems
  • Suggest strategies for improving patient centered leprosy services

Study Site

FMR conducted the study in an area covered by six primary health centres (PHCs) from Karjat block from Raigad district, Maharashtra. This block is a tribal population dominant area. Three of the PHCs from this block (Ambivli, Kalamb and Khandas) are categorized as tribal PHCs that provide services predominantly to the tribal population located in remote hilly villages. The other three PHCs from Karjat block (Neral, Kadav and Mohili) primarily cater to non-tribal population.

Salient findings

  • General characteristics Leprosy patients interviewed for the study appear to be more marginalized compared to TB, malaria and skin patients. Leprosy patients are younger than patients interviewed for other conditions. They are also more likely to be non-literate. Unemployment was more commonly reported among leprosy patients.
  • Patterns of distress In addition to physical symptoms which are characteristic of each of the conditions – patches and tingling sensation in leprosy; cough, fever, breathlessness and loss of appetite in TB; high fever with rigors in malaria and itching in skin conditions, patients interviewed for the study reported socio-economic-psychological effects of the health condition as well. More than half leprosy and TB patients reported sadness, anxiety, worry because of illness, and concern about the course of illness and ‘tension’; however the proportion was higher for TB patients. These symptoms though common among the interviewed patients were reported only when probed. These findings need to be further explored through analysis of qualitative data obtained through EMIC and for various sub-groups of the sample based on sex, age group, position in the family (head of the family/wife of head of the family/other).
  • Stigma This data provides evidence of stigma for leprosy and TB and to some extent for skin conditions. Leprosy and TB patients fear discrimination from community but not from family members as is reflected perceived difficulty in getting married, apprehensions expressed by about ten percent patients that others may not visit them if they found out about their condition and their desire to keep their diagnosis from others in the community. At the same time majority of the TB and leprosy patients have discussed their health condition with person/s they trusted, often a family member or a friend. Proportion of patients reporting health condition affecting sexual relations with spouses is lower than those who said they might have problems marrying; indicating lesser perceived stigma within family. The data does not provide evidence of experienced stigma/discriminatory behaviour by community and health care providers. Very small proportions of patients have reported discriminatory behaviour from health care providers.
  • Perceived causes Awareness about role of infection in causation of leprosy and TB appears to be lower than it is about malaria and skin conditions. Where only ten percent of leprosy patients and six percent of TB patients mentioned germs/infection as a cause of the disease (only after it was probed for), more than half malaria patients reported insect  bite as a cause of malaria. Despite years of implementing a national programme for elimination of leprosy, the information has not reached the remote tribal areas such as those from Karjat block where the study was conducted. More than ten percent of leprosy patients attributed their condition to punishment for past deeds.
  • Help-seeking Despite access to a PHC – from where they eventually took the treatment for their health condition – more than 40% of TB patients had consulted private practitioners and specialists. This preference for private sector was not seen among patients suffering from leprosy, malaria and skin condition. It is also interesting to note that more than one third of the leprosy patients had consulted village level health workers – a help seeking pattern not seen among patients suffering from other conditions including TB. Reasons for this typical behaviour need to be explored. Family and friends play a key role in motivating and guiding patients regarding sources of health care as seen through the data. More than 80 percent of TB and malaria patients and more than 50% of leprosy and skin patients were accompanied to the first health care facility by a family member or friend.
  • Experience with primary health care facility Less than one fourth of leprosy patients and half of the TB patients were explained about their condition at the TC, however most of the patients for all four conditions were informed about duration of the treatment. This indicates a strong need for strengthening communication at TC. Patients also reported problems in accessing TC and more than ten percent patients reported long waiting time to see the doctor/health care provider at the TC. Despite being cared for through national programmes a small proportion of leprosy, TB, and malaria patients reported being asked to buy prescription medicines. 26% skin patients too reported having to ought medicines prescribed from the PHC. Non-availability of required medicines and frequent referrals to SDH to consult a skin specialist were mentioned to be deterrent to people seeking treatment at PHC for skin conditions (qualitative data from EMIC not analysed).

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