Projects

Management of Erythema Nodosum Leprosum

  • Research priorities: Disability
  • Country: India, Indonesia
  • Status: Completed

Project coordination

VU University Amsterdam, Athena Institute (The Netherlands) 

Leprosy reactions are serious complications of leprosy which lead to impairment, disability and for instance pain. Treatment of leprosy reactions is available, but individuals with reactions experience often adverse effects.This research project evaluated how the management of leprosy reactions may be improved by including the perspectives of affected persons and taking a participatory approach.

A qualitative and participatory research to improve the management of Erythema Nodosum Leprosum

Duration

July 2018 - December 2020

Project Coordination

VU University Amsterdam, Athena institute, The Netherlands

Partners

Project summary

Leprosy reactions, are immune-mediated complications of leprosy, which play a significant role in the morbidity of people affected by leprosy. While a considerable amount of literature has been published on the clinical management of leprosy reactions, still few studies focus on the experience of the disease from the point of view of affected people in endemic countries such as Indonesia and India. This study aimed to investigate the barriers and facilitators people with leprosy reactions face in accessing quality management of leprosy reactions, and to analyse the impact of leprosy reactions on the lives of people affected in Indonesia and India.

This qualitative study involved interviews people affected by leprosy reactions and healthcare workers and focus groups with their family members. The participants affected were purposively selected based on the type of leprosy reactions. The data were collected through 71 interviews and 10 focus group discussions. A participatory approach was adopted to better explore the impact and the barriers and facilitators faced by people affected and assure research findings can be used to generate change in the local context.

This study found that both types of leprosy reactions were perceived as unpredictable and painful conditions. Occurrence of leprosy reactions restricted physical activities of participants, such as going to the bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety and anger. Some recounted that they felt stigmatised and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home and some concealed the name of leprosy, while most of the Indian respondents continued working even just prior to hospitalisation. Furthermore, this study found that perceived barriers to quality management of leprosy reactions include health financing-related issues, lack of competent health workforce, inadequate patient reporting systems, prohibition of thalidomide use (in Indonesia), and stigma. Meanwhile, the perceived facilitators were integrated health services, cheap drugs and supportive attitude from health workers and family members.

In conclusion, leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Through a participatory process, the research group identified a need for more peer support for people with leprosy reactions and inclusion of psychological and social aspects into the treatment sessions.

 

Related publications

Putri AI, de Sabbata K, Agusni RI, Alinda MD, Darlong J, de Barros B, et al. (2022) Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries. PLoS Negl Trop Dis 16(6): e0010476. 

 

Budget

€ 63,416 | Project number: 706.18.45