Dept. of Health Research Govt. of India
World Health Organization
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Name of the Project Socio-cultural features and stigma of leprosy for treatment & control in general health services in India: Cultural epidemiological study
Principal Investigator P. Manickam (PI cum Co-ordinator)
Co-Principal Investigator(s) Dr. Thilakavathi Subramanian (NIE);Prof. MG Weiss (SwissTPH); Dr. K Ramalingam (Govt. of Tamil Nadu)
Other Investigator(s)
FMR MAAS-CHRD RMRCD RMCH RMRCB
PI Dr. VP Shetty Prof. RK Mutatkar Dr. PK Mohapatra Col (Retd). Dr. VK Agrawal Dr. A. Mahapatra
Co-PI(s) Mr. U Thakkar,
Dr. Ahiwale
Dr. AM Kudale Dr. HK Das Drs. S Singh, K Narula, V.Chaudhary, A Singh;
Mr. M Sharma
RMRCB:
Mr. D.P. Hanshdha, Dr.SK Kar
Govt. of Odisha: Dr. PKB Patnaik
Collaboration / Participating Centers
  • The Foundation for Medical Research (FMR), Mumbai, Maharashtra
  • The Maharashtra Association of Anthropological Sciences (MAAS)-Centre for Health Research & Development (CHRD), Pune, Maharashtra
  • Regional Medical Research Centre (ICMR), Dibrugarh (RMRCD), Assam
  • Rohilkhand Medical College & Hospital (RMCH), Bareilly, Uttar Pradesh
  • Regional Medical Research Centre (ICMR), Bhubaneswar (RMRCB), Odisha
Funding Agency / Sponsor ICMR
Budget 19,58,964 (for NIE); Participating centres receive funding directly from ICMR
Study Period 2012-2014
Objectives
  1. Clarify relevance of socio-cultural features of experience and meaning of illness and the current impact of stigma between leprosy and other health problems
  2. Suggest strategies for improving patient-centred leprosy services
Description

Leprosy is no longer considered a public health problem at the national level, since the overall prevalence in India is less than 1 per 10,000 population, even though it remains more problematic in some areas. Notwithstanding accomplishments of the programme, questions remain about the effectiveness of current strategies of leprosy control. Leprosy-related stigma also remains a serious issue, contributing to a frequently overlooked “hidden burden” of this neglected disease beyond the standard epidemiological indicators. Such questions are especially timely with the current integration of leprosy services in primary healthcare, and the importance of maintaining the capacity for diagnosis, access to effective treatment and disability care despite the impact of stigma, both in the general population and among general health services personnel. Research is needed to determine whether and how social and cultural features of leprosy affect access and the quality of clinical services and leprosy control that are required for effective control with integrated services.
In this context, NIE is conducting and co-ordinating this ICMR Task Force funded multi-centric study that applies cultural epidemiological framework to clarify the relevance of socio-cultural features of leprosy and the current impact of stigma concerning patients, health systems and community.

This study will be relevant and has implications for leprosy control programme in terms of patient-centred services in primary care, including prevention and management of disabilities.

The data will be collected from the following settings:

  • Tiruvannamalai district, Tamil Nadu (NIE-ICMR)
  • Karjat block of Raigad district, Maharashtra (FMR)
  • Thane (Rural), Maharashtra (MAAS-CHRD)
  • Dibrugarh, Assam (RMRCD)
  • Bareilly district, Uttar Pradesh (RMCH)
  • Sonepur, Odisha (RMRCB)
Quarterly Reports (5-10 lines) All the participating centres have completed pilot study. On the basis of review of experience from the pilot study, the centres agreed to revise the instruments and, operational definitions. They are expected to conduct pilot-testing of the revised instruments.
Significant achievements NIE conducted a ‘Workshop on lessons from pilot and training the project staff ‘ during 25-26 April 2012 with the  objectives to (1) review lessons learnt from pilot study and decide on common instruments for data collection (2) train the project staff on data collection and management (3) discuss project implantation issues. PI’s and investigators from all the centres participated in the workshop (except RMRCD and RMCH).

The key conclusions of the workshop were (1) revise the protocol to incorporate the finalized definitions (2) assess the feasibility of recruiting participants as per eligibility criteria (3) revise the instruments (4) translate and pilot revised instrument(s) (5) train and standardize investigators on cultural epidemiological methods.
Publications Nil