Social and healthcare-seeking experiences of people affected with lymphedema in Bangladesh

Background: Neglected tropical diseases (NTDs) such as lymphatic filariasis (LF) are a significant concern in developing countries like Bangladesh. Understanding the health and social needs of individuals with LF is essential for improving their healthcare-seeking experiences and advancing the health system's capacity. Therefore, this qualitative study aimed to explore the social and care-seeking experiences of persons with LF in Bangladesh. Method: Semi-structured, face-to-face, in-depth interviews were conducted with people with LF in two highly endemic districts in northern Bangladesh. Online key informant interviews were also conducted among stakeholders associated with NTD care. Recorded interviews were analysed using thematic analysis. Result: 28 participants (20 with LF and 8 stakeholders) were interviewed, and five major themes emerged after analysis. In terms of disease-related knowledge, the participants perceived lymphedema as a condition characterised by swelling, pain, and fever, which they believed was caused by eating stale food, being infected by others, or being punished by God. Overall, females in particular shared their experiences of negative attitudes from the community. LF adversely affected their daily life, including mental health and well-being. Most respondents sought support from conventional healthcare services; however, their perception of incurable disease led to low medication adherence and dissatisfaction. Lack of knowledge, inaccessibility of healthcare services, financial challenges, and physical disability were major barriers to seeking care. Participants emphasised the importance of financial assistance, community awareness, enhancing the accessibility and quality of care, and occupational rehabilitation scopes with governmental aid. Conclusion: Our findings highlighted the importance of ensuring an accessible and affordable healthcare infrastructure for people with LF. Additionally, the involvement of government and related stakeholders is essential to improve service users’ experiences and attain high standards, combined with the need for inclusive well-being-related services. Concentrated efforts should be made to design culturally acceptable interventions to raise awareness and reduce stigma. Author summary: LF is one of the significant NTDs, and if left untreated, it can lead to severe complications such as lymphedema. As a leading cause of disability, it results in restricted mobility, loss of income, impaired well-being and social stigma. Even after eliminating the condition in 2023, over 70 million people remain at risk in high-endemic areas of Bangladesh. This study was conducted in two districts with high prevalence rates of LF in northern Bangladesh to explore healthcare-seeking behaviour, stigma, and challenges faced by people with LF. In-depth interviews and key informant interviews were conducted with individuals with LF and key stakeholders. Most affected individuals delayed seeking care or could not afford formal care; others relied on traditional healers. Females with LF encountered heightened stigma and exclusion, leading to emotional distress. The key challenges identified in this study included lack of awareness, limited access to healthcare, and the financial burden of treatment. Our findings highlighted the importance of providing accessible, available, and affordable healthcare infrastructure, as well as the need for inclusive well-being-related services for people with LF. A multi-sectoral approach is needed to design culturally acceptable interventions to ensure holistic care and support for LF.