Nipah virus destroyed my personal, family, and social life: stories of the hardship faced by Nipah survivors in Bangladesh

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BACKGROUND: Nipah virus (NiV) causes recurrent outbreaks in Bangladesh with high mortality and persistent health consequences among survivors. As outbreak detection and clinical management improve, the number of survivors is likely to increase, creating an urgent need for long-term clinical, psychosocial, and rehabilitation support. OBJECTIVE: To explore the lived experience of NiV survivors in Bangladesh and how physical, psychological, social, and economic challenges shape life after acute illness. METHODS: We conducted a qualitative study with a phenomenological orientation among 27 adult NiV survivors in Bangladesh. Survivors were purposively selected to capture variation in sex, age, exposure route, years since illness, and severity of acute disease. Where survivors had substantial communication difficulties or limited recall of the acute illness, caregivers provided supplementary contextual information on illness and recovery. In-person, semi-structured interviews were conducted in May 2022. Data were analysed inductively using reflexive thematic analysis with analyst triangulation to enhance credibility. RESULTS: Participants were interviewed between 2 and 21 years after illness. Survivors described persistent functional limitations, including fatigue, mobility and balance problems, headaches, and visual changes, as well as cognitive and emotional difficulties, including memory problems, irritability, sleep disturbance, and anxiety. These challenges altered daily routines, self-perception, and expectations for the future. Survivors also described stigma and fear of contagion in healthcare and community settings, which restricted social participation, education, and marriage prospects. Households experienced substantial economic hardship through income loss, borrowing, mortgaging land, and sale of assets to pay for treatment and recovery. Coping responses included practical adjustments and reliance on family support and religious faith, although many participants reported ongoing uncertainty about health, livelihoods, and the future. CONCLUSIONS: Survivorship after Nipah virus infection in Bangladesh involves continuing functional, cognitive, psychosocial, and economic hardship that extends well beyond acute recovery. Priority actions include survivor-centred rehabilitation, brief mental health support, and counselling for caregivers on safe care practices. Stigma-sensitive risk communication and targeted financial support should also be integrated into existing Nipah surveillance and response systems.

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