Full project title:
A pilot study using participatory, translational, social science research methods to promote earlier detection of leprosy

Project coordination
The Leprosy Mission Trust India

Partners
Griffith University (Australia)
The Leprosy Mission (DRC)
Maharashtra Association of Anthropological Sciences (India)
IDEA International (India)
Association of People Affected by Leprosy (India)

Aim: Many of the most important social and other factors that prevent people from being diagnosed early are still not well understood or implemented.This project has explored some of these factors and final results of this project are available.

Final project summary
Making sure that leprosy is detected early (that diagnosis is not delayed) is vital to preventing individuals from being permanently disabled by nerve damage, blindness or other conditions; as well as preventing them from experiencing the multiple flow on psychological, health, livelihood and social effects that are linked with the disease.  Early detection and treatment is also crucial to stopping the spread of the disease within families and the community. While there have been advances in medical aspects of improving diagnosis, many of the most important social and other factors that prevent people from being diagnosed early are still not well understood or implemented.  These factors, which include psychological, attitudinal, social, community, service related factors (and even structural and environmental issues like transport and organisational or government policies), need to be understood in a more comprehensive and theoretically integrated way.

This project has explored some of these factors using the most appropriate personnel (employing people affected by leprosy and training them to be research partners), and appropriate methods (relying on local level, local language interviews and discussion groups). The project has had a strong emphasis on research translation – going beyond ‘exploring’ to seeking to influence services in local settings.  The project has conducted translation workshops with service providers to consider the implications of these findings for the local context, and also conducted a translation presentation with leaders of all key leprosy NGOs in India.

Many of these research methods are quite new in the leprosy research area. This experience has enabled us to test and refine some of these.  This has been a very informative pilot study, both in exploring the content of the questions, and in testing out how these innovative social science research methods work in research to promote early detection of leprosy. 

Impact

P. Kuipers, A. Joy, A. John et al. A pilot study using participatory, translational, social science research methods to explore stakeholder perspectives on preventing delayed diagnosis in leprosy. Leprosy Review 2018;89(2):124-138

Presentation for ILEP India Country Managers.

Greater social inclusion and valuing of people affected by leprosy through their active involvement in (and skill development through) the project.