Samarth is a community-led project working with people affected by leprosy and LF in Chhatarpur district, Madhya Pradesh. People living with these conditions may face long-term health complications, reduced mobility, financial hardship, discrimination and social isolation. Samarth was created to help them manage their health, support one another and become more confident in speaking up for their needs. The project was delivered in partnership with Effect Hope and LEPRA Society, with funding contrubuted from Saint Lazarus Trust.
Samarth worked with more than 1,200 members of self-support groups across three blocks and over 100 villages. Building on the groups established during the first phase of Samarth, the project used a harmonised community-development approach known as UPLIFT to strengthen self-care, peer support, leadership, feedback, advocacy and connections to local services.
At the heart of the project was a simple but critical shift: people affected by leprosy and LF were not only receiving support, they were identifying their own priorities, learning how to manage their health, supporting peers, leading meetings and building a stronger collective voice within their communities.
Samarth brought together people affected by leprosy and LF in local self-support groups; safe spaces where members could learn, share experiences and help one another.
By the end of the project, members were running these groups themselves instead of depending on project staff. They had chosen their own leaders, agreed how decisions would be made, identified the challenges affecting members and built connections with nearby health centres and local services.
In 96% of the groups, meetings were led by trained members. Every group also had a clear way for people to raise concerns and make suggestions. Trained peer supporters provided practical and emotional support to others. Members felt more confident speaking openly, making decisions together and asking for help. The groups became trusted spaces where people could learn how to care for their health, support one another and find solutions to shared problems.
Samarth helped members learn simple self-care routines to protect their skin, manage swelling and identify complications early.
By the end of the project, 98% of members had received self-care training and 95% were practising self-care regularly, either daily or several times a week. Daily self-care alone increased from 51% to 59%. Members also became more confident in looking after their health without ongoing NGO support. The proportion who felt very confident managing their own self-care almost doubled, rising from 21% to 38%. These improvements were accompanied by fewer health complications.
Among people affected by LF; skin breaks that can lead to infection decreased from 13% to 8%; painful acute attacks fell from 18% to 7%, and the proportion requiring referral for complications dropped from around 18 in every 100 people to fewer than one in every 100. Mobility improved as well, with more members reporting that they could walk one kilometre or further.
Samarth was designed to address more than physical health. People affected by leprosy and LF can experience shame, isolation, discrimination and loss of confidence; barriers that can be as damaging as the conditions themselves.
At endline, 90.7% of respondents reported an improvement in their overall quality of life, compared with 74.7% at baseline. Measures of mental wellbeing and self-efficacy also improved. The proportion reporting no discrimination from society increased from 80.0% to 93.3%, while those who said their family treated them the same increased from 86.4% to 97.2%.
Members also became more open about their condition. The proportion who said they never felt ashamed increased from 62.1% to 77.7%, and more people felt comfortable discussing their condition with friends and extended family. Together, these changes suggest that stronger peer connections and greater knowledge were helping to create a more supportive social environment.
The project supported the participating self-support groups through the delivery of a range of information, education and communications activities, encouraging greater awareness and engagement which played a significant role in changing beliefs and behaviours. This included; school awareness sessions, the commissioning of public artworks, supporting Accredited Social Health Activitist workers during MDA pill distribution, peer support work and participation in Village Health and Nutrition Day sessions conducted at Anganwadi Centres.
The project’s influence extended beyond self-support group members. Community awareness of the signs, transmission and treatment of leprosy and LF improved substantially. Recognition of skin patches with loss of sensation as a sign of leprosy increased from 49% to 76%, while knowledge that leprosy treatment is available through government health centres rose from 61% to 90%.
Awareness of LF increased from 70% to 97%, and correct identification of mosquito bites as the mode of transmission rose from 65% to 86%. Fear-based avoidance of people affected by leprosy or LF wearing protective footwear fell from 24% to 7%.
Community acceptance improved across everyday social and economic situations, including friendship, work, housing and neighbourhood life. Yet the evaluation also showed that attitudes linked to marriage changed very little. This is an important reminder that deep-rooted stigma takes time to change and requires sustained engagement with families and community leaders.
Samarth has created a strong foundation for community-led support, but project closure is not the end of the journey. At endline, 47% of groups had documented sustainability plans, 41% had advocacy plans and 23% had already undertaken advocacy activities. Extending these practices across every group will be essential to protect the progress made.
The next priorities are clear: strengthen links with Panchayats and public health services, continue mentoring group leaders and peer supporters, remove the barriers that limit women’s participation, deepen work on family and marriage-related stigma, and ensure that every group has a practical plan for the future.
Samarth strengthened community-led support systems, improved self-management and wellbeing, reduced stigma and increased disease knowledge. Nineteen of the 25 indicators with numerical targets were met or exceeded.
Its most important achievement, however, may be the shift behind those numbers: groups are increasingly able to organise, support members and solve problems for themselves. When people affected by leprosy and LF have the knowledge, confidence and opportunity to lead, support becomes more local, more relevant and more sustainable.
Samarth shows that lasting progress is built with communities and not simply delivered to them.
