Piloting lymphoedema management for lymphatic filariasis: experiences and perceptions of patients and stakeholders from Kwale county, coastal Kenya.

backgroundThe global program to eliminate lymphatic filariasis (GPELF) was started in 2003 with two strategies: mass drug administration (MDA) to interrupt disease transmission and the morbidity management and disability prevention (MMDP) to provide basic hygienic care to filariasis lymphoedema patients.

methodsWe conducted a mixed methods study with pre-intervention, intervention and post-intervention phases without control groups among 106 participants from two lymphatic filariasis-endemic wards of Lunga Lunga sub-county, Kwale county on the coastal Kenya between 2019 and 2021. During the intervention phase, a lymphoedema management care package was developed using participatory approaches. In the post-intervention phase, qualitative data was collected to assess perceptions of the impact of the intervention on patients' knowledge of and access to lymphoedema management services.

resultsIn the pre-intervention phase, 86.8% of patients reported experiencing pain, swelling, or redness in their limbs, and 44.3% felt negatively about their condition. More than half (52.8%) did not know the cause of their limb swelling, and 73.6% did not use appropriate footwear. Additionally, 57.5% did not know how to care for their wounds to prevent acute attacks. Key challenges included financial constraints (39.6% spent up to 200 Ksh per visit), long distances to health facilities (24.5% lived > 5 km away), and stigma. In the post-intervention phase, participants reported improved knowledge and self-care practices, including washing, elevating, and exercising affected limbs. Community health volunteers (CHVs) were reported to play a critical role in raising awareness, identifying and referring patients, and improving health-seeking behavior, which contributed to increased service utilization and perceived improvements in quality of life.

conclusionTraining of health care providers, caregivers and patients using the developed intervention care package contributed to improved knowledge on cause and management of lymphoedema. The CHVs played a critical role in the identification and referral of patients, which contributed to improved health-care seeking behaviour and increased service utilization. Collaboration with the county health authorities contributed to improved quality of health care services provided for lymphoedema management.