A Qualitative Study of Knowledge, Experiences, and Healthcare Needs of People Living with Lymphedema in Kamwenge District, Rural Uganda

Background Lymphedema is a progressive, disabling condition caused by lymphatic system failure, yet it remains a neglected health issue, especially in low-resource settings. In rural Uganda’s Kamwenge District, affected individuals face not only chronic physical symptoms like swelling and pain but also considerable social and emotional challenges. Misunderstandings about the condition, culturally rooted stigma, and limited access to timely diagnosis and appropriate treatment further exacerbate the problem. Despite global efforts to address lymphedema within neglected tropical disease (NTD) programs, many affected communities remain marginalized and underserved. Beyond clinical symptoms, lymphedema disrupts livelihoods, education, family dynamics, and social participation. This study used a qualitative design to explore the lived experiences of lymphedema patients and caregivers in Kamwenge. It examined community knowledge, healthcare barriers, and cultural beliefs to identify locally relevant strategies for prevention, care, and stigma reduction. 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.