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.