• Research priorities: Disability
  • Country: India
  • Project no.: FP24\19
  • Budget: €206,665
  • Duration: July 2024 - October 2026
  • Status: Not yet started

Full project title:
Establishing the effectiveness of a peer support approach based Basic Psychological Support for NTDs (BPS-N) to address mental wellbeing, stigma and social participation of persons affected by leprosy and lymphatic filariasis in Jharkhand, India

Project coordination
NLR India Foundation

GLRA India
Central Institute of Psychiatry, Ranchi, Jharkhand
Association of Persons Affected by Leprosy (APAL)
LEPRA Society

Aim: This study aims to evaluate the effectiveness of BPS-N-based peer support for addressing stigma, mental well-being and social and work participation of persons affected by leprosy or LF.

Project summary
India is home to a large proportion of the global burden of leprosy and lymphatic filariasis (LF), two neglected tropical diseases (NTDs). Both leprosy and LF can cause life-long and irreversible disabilities which can lead to serious problems . The fact that these affected people are not participating in important aspects of life can be explained by the stigma that exist. Together, the disabilities, limited participation and negative environment can cause people affected by leprosy or LF to experience poor mental health, depression and/or anxiety.

In 2020 and 2021, NLR India Foundation developed Basic Psychological Support for persons affected by NTDs (BPS-N) guide. This is an intervention that aims to reduce the psychological consequences by providing support to people affected by leprosy or LF. The intervention is delivered by peers, other people who have (had) leprosy or LF who provide support. The first results from the BPS-N implementation when piloted in India, showed promising results. However, the actual effectiveness of this tool has not been studied yet. This research proposal aims to develop a project to test the effectiveness of peer support based on BPS-N, for addressing issues related to stigma, mental well-being and participation among persons affected by leprosy or LF. In this study we will compare the mental wellbeing of people affected by leprosy or LF who will receive the BPS-N intervention with a group of people affected by leprosy or LF who will not receive this. This will hopefully provide additional evidence on the potential of this intervention to improve the (mental) well-being of persons living with NTDs.

The study will be conducted in two districts in Jharkhand state, India (Garhwa and Palamu. Our study will consist of three phases:
1) During the first phase, we will prepare all study material, we will also train the peer-supporters on the use of the BPS-N guideline, and collaborate with local government departments. Further, we will identify all participants for the study, these include the peer supporters, people receiving the peer-support intervention, and the people who will not receive the intervention. Who belongs to which group, will be randomly decided based on their geographical location.
2) During the implementation phase, the peer-supporters will receive a training and then provide the BPS-N intervention to the people affected by leprosy or LF. Meanwhile, the researchers will collect information about the mental wellbeing, participation and stigma of the study participants. They will also be interviewed and asked how they experienced the intervention. In addition, the local health and social services will be involved. The researchers will also collect information about how the BPS-N intervention can be integrated with their services.
3) The last phase will focus on evaluating the effects of the intervention, by comparing all collected information stigma, mental wellbeing and participation with the initial levels and between the groups. Recommendation will be written up and offered to the health and social services in Jharkhand state how to integrate the BPS-N intervention in their existing programmes.