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

Abstract

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.

Fig 1. Thematic distribution of major findings.