“Whenever I tell her to wear slippers, she turns a deaf ear. She never listens”: a qualitative descriptive research on the barriers to basic lymphedema management and quality of life in lymphatic filariasis patients in a rural block of eastern India

BACKGROUND: Chronic lymphatic filariasis patients in Bihar, India, need management of lymphedema to live a disability-free life. For patients who have recurrent attacks of acute dermato-lymphangio-adenitis (ADLA), World Health Organization (WHO) has recommended simple home-based measures that include maintaining hygiene, skin care, and limb movement. However, patients in rural areas are unable to adopt them, resulting in a vicious cycle of ADLA attacks. There might be multiple realities from patients’ and healthcare workers’ perspectives that were unexplored. Qualitative research was deemed best suitable to identify the barriers to carrying out home-based lymphedema practices that adversely affected quality of life. METHODS: The qualitative descriptive study was conducted in two villages in the rural field practice area under a tertiary care hospital in Bihar. Researchers purposively selected ten participants, including patients affected by lymphedema, their caregivers, the grassroots healthcare workers, and the block health manager. In-depth interviews were conducted using a semi-structured interview guide. Data were entered into QDA Miner Lite, where researchers did attribute, in-vivo, process, descriptive, emotion, and holistic coding, followed by content analysis, where categories and themes emerged from the codes. RESULTS: Three themes emerged: the inherent nature of disease, patient-related factors, and healthcare system-related factors. The fifteen identified barriers were low awareness, low adherence, low health-seeking behavior, poor personal hygiene, and categories like signs and symptoms, seasonal factors, hampered activities of daily living, hopelessness from not getting cured, psychosocial difficulty, lack of capacity building and receipt of incentives by healthcare workers, unavailability of laboratory diagnosis and management of complications at the facility, inconsistent drug supply, and no financial assistance. CONCLUSIONS: Accessibility to WaSH, regular training of home-based care, increasing the capacity and motivation of grassroots workers, and the generation of in-depth awareness among the patients are required to achieve the elimination of filariasis, with MMDP as a key component of that strategy for endemic districts across the whole country. GRAPHICAL ABSTRACT: [Image: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13071-023-06036-0.