Lived experiences, challenges, and barriers to health services for people with onchocerciasis and lymphatic filariasis in hard-to-reach areas of southeastern Nigeria

Abstract

Onchocerciasis and Lymphatic filariasis (LF) are parasitic vector-borne, helminthic skin-related neglected tropical diseases (Skin-NTDs) characterized by chronic disfigurement, disability, and severe psychosocial distress. Decades of international programs involving mass drug administration have significantly reduced disease transmission, but morbidity management and disability prevention (MMDP) services are still lacking. This study explored the lived experiences, challenges, and health-service barriers faced by people affected by Skin-NTDs. This qualitative study was conducted in two hard-to-reach areas of Enugu state, southeastern Nigeria. Five focus group discussions involving thirty three participants were conducted with separate male and female groups among persons with visible disease manifestations. Thematic analysis was done with Nvivo version 15. Participants reported widespread sociocultural misconceptions about causation—such as charms, “bad blood,” hernia, or malicious spiritual afflictions—reflecting deep gaps in community understanding. Despite the proximity of primary health centres (PHCs), most male participants perceived them as unsuitable for chronic Skin-NTD care, viewing them instead as facilities for women, children, or minor ailments. Consequently, nearly all participants relied on traditional healers and herbal remedies, often experiencing temporary relief but eventual symptom recurrence, financial strain, and profound hopelessness. Living with Skin-NTDs also carried substantial psychological and social burdens: participants described stigma, self-isolation, limited participation in community life, and fear of rejection. Addressing these multidimensional challenges requires recognizing local belief systems, engaging traditional healers, tackling stigma, and improving access to affordable, disability-inclusive Skin-NTD services. Strengthening PHCs to provide chronic care, or implementing community-based service delivery models will be essential for equitable, people-centered interventions in hard-to-reach communities.