“I called people to carry me to the latrine”: Podoconiosis patients’ access to water, sanitation, and hygiene in Butaro, Rwanda

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Abstract
Podoconiosis is a preventable Neglected Tropical Disease (NTD) that results in significant lower limb swelling and chronic disability. Its management can be done at home by regularly washing feet with clean water and soap and using protective footwear. This study aimed to explore podoconiosis patients’ experiences with access to water, sanitation, and hygiene (WASH) and to identify barriers and facilitators of home-based management (HBM). In this qualitative phenomenological study, participants were recruited following a screening conducted in Butaro Sector (Rwanda) to identify individuals with lower limb lymphedema. Randomly selected individuals underwent a clinical assessment, and only those confirmed to have podoconiosis were invited for an interview. In-depth interviews, supplemented by observation and photographs, were conducted. Transcripts were inductively coded using Dedoose (version 9.0.80) and analyzed through thematic analysis. Overall, 26 interviews were conducted across all five cells of Butaro Sector. Poverty and physical discomfort were major barriers in accessing WASH and HBM essentials, with many relying on family or neighbors for support. Shame, laughter, and discrimination from community members further hindered access to WASH. However, some participants found a financial solution in selling animal and household waste. Moreover, participants demonstrated little or no knowledge about podoconiosis which influenced their treatment choices. Many attributed the disease to witchcraft, blood infection, or God’s will. Common care choices included traditional healers, self-care, or health centers. These findings demonstrate the need to integrate community education into podoconiosis management programs to address misconceptions and stigma while promoting income-generating activities to ensure consistent access to HBM essentials.

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