Unmet needs of households and people living in leprosy colonies in India

Objective To assess the unmet needs of households and individuals living in leprosy colonies in India. Methods A mixed-methods study was conducted in 129 leprosy colonies across seven states in India. The study included a survey of 6907 family members from 2134 households and 14 focus group discussions (FGD)—6 FGDs with adolescents (aged 10–19 years), 4 FGDs with eligible women, and 4 FGDs with senior citizens. Results Within the leprosy colonies, 36.1% of household members and 88.7% of household heads were affected by leprosy. Additionally, 0.8% of family members had disabilities due to causes other than leprosy. Around 1.6% of households had at least one child under 18 years of age with a disability. Among persons with disabilities, 77.7% expressed a need for any type of care, and of these, 48.9% reported unmet needs related to assistive devices such as wheelchairs, crutches, or splints. Self-care needs were reported by 47.7%, with 13.4% requiring specialized care. Reconstructive surgery was needed by 1.7% of leprosy-affected individuals with disabilities. Gender disparities were evident in various needs, including reconstructive surgery (male: 72.2% vs. female: 27.8%) and self-care (male: 55.2% vs. female: 44.8%). Key documentation needs for accessing public services included the Ayushman Bharat card (16.8%), the Permanent Account Number (PAN) card (7.4%), and the Below Poverty Line (BPL) card (4.5%). Other community needs included children’s education, women’s income-generation schemes, elderly healthcare, and infrastructure support. Conclusion The unmet needs identified in this study can inform stakeholders for better planning and resource allocation to improve the quality of life of persons residing in leprosy colonies in India.