A qualitative study of knowledge, experiences, and healthcare needs of people living with lymphedema in Kamwenge District, rural Uganda

Abstract

Background: Lymphedema is a long-term, disabling condition caused by dysfunction of the lymphatic system, yet it continues to receive little attention in low-resource settings. In rural areas such as Kamwenge District, Uganda, those affected endure ongoing physical symptoms including swelling, pain, and reduced mobility alongside significant emotional and social challenges. Stigma, cultural misunderstandings, and poor access to timely diagnosis and effective care further hinder their well-being. While global neglected tropical disease (NTD) programs have made progress, many vulnerable communities remain overlooked. This qualitative study explored the lived experiences of lymphedema patients and caregivers in Kamwenge, focusing on local beliefs, knowledge gaps, and healthcare barriers to inform context-specific and stigma sensitive interventions. Methods: A community-based qualitative study design was employed. Data were collected through five focus group discussions (FGDs) involving lymphedema patients and caregivers, and seven key informant interviews (KIIs) with local health officials, community leaders, and religious figures. Participants were purposively sampled from Rukunyu Hospital and surrounding communities to capture diverse perspectives. Data were transcribed, translated, and analysed using Braun and Clarke’s thematic analysis approach. Results: Seven key themes emerged: (1) patients’ daily struggles with pain, dependence, and economic hardship; (2) stigma leading to social exclusion; (3) gaps in knowledge and culturally influenced misconceptions about causes and treatment; (4) gender-specific vulnerabilities such as abandonment and psychological distress; (5) weak healthcare infrastructure and limited access; (6) reliance on informal coping strategies including herbal remedies, faith, and peer support; and (7) institutional deficiencies alongside community-driven recommendations for improved care and prevention. Despite some health education efforts, misinformation and stigma remain widespread, and affected individuals are often excluded from social support programs. Conclusion: Lymphedema in Kamwenge District is a complex issue intersecting health, social stigma, and systemic weaknesses. Urgent, community-focused interventions are critical to closing knowledge gaps, enhancing healthcare services, reducing stigma, and integrating lymphedema management into national health policies.