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

肯尼亚沿海夸莱县淋巴丝虫病淋巴水肿管理试点研究:患者和利益相关者的经验和看法

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Abstract

BACKGROUND: The 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. METHODS: We 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. RESULTS: In 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. CONCLUSION: Training 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.

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