“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

Abstract

AbstractBackgroundChronic lymphatic filariasis cases in Bihar, India, need management of lymphedema to live a life free of disability. For patients who have recurrent attacks of acute dermato-lymphangio-adenitis (ADLA), WHO has recommended simple home-based measures that include maintaining hygiene, skin care, and limb movement. But patients in rural areas are unable to adopt them, resulting in a vicious cycle of ADLA attacks. So there might be multiple realities from patients’ and healthcare workers’ perspectives that are unexplored. A qualitative research was deemed best suitable to identify the barriers to practising home-based lymphedema practices that are adversely affecting quality of life.MethodsThe 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 was 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.ResultsThree themes emerged: the inherent nature of disease, patient related factors, and healthcare system related factors. Besides low awareness and adherence, low health-seeking behaviour and poor personal hygiene, 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 lab diagnosis and management of complications at the facility, inconsistent drug supply, and no financial assistance were the identified barriers.ConclusionsAccessibility 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.