Over 25 Years of Hope: Development of Lymphatic Filariasis Patient Support Groups in Haiti

TL;DR

This paper describes the 25-year development of support groups for lymphatic filariasis patients in Haiti, highlighting their benefits and sustainability despite challenges.

Contribution

The study demonstrates the successful adaptation of support groups for lymphatic filariasis in a resource-limited setting over two decades.

Findings

Hope Clubs improved limb self-care and reduced inflammatory episodes in lymphatic filariasis patients.

Support groups enhanced self-efficacy, economic benefits, and quality of life for participants.

Despite funding and political challenges, the groups persisted due to community ownership and local adaptation.

Abstract

Support groups can create environments that are conducive to healing and well-being, particularly for persons with stigmatizing chronic diseases. In 1998, the support group concept was adapted in Haiti for persons with disabling lymphedema caused by lymphatic filariasis (LF). The project was developed with the expectation that the support group model conceived in the developed world be interpreted and modified by persons affected with lymphedema in the Haitian setting. Initiated with modest financial support within a research initiative to eliminate LF, a total of 50 “Hope Clubs” were formed from 1998 to 2023 across seven communes (districts) located in 3 of Haiti’s 10 regional Departments. Documented benefits of the support groups included improved limb self-care, decreased incidence of inflammatory episodes (adenolymphangitis), enhanced self-efficacy, economic benefit through microenterprise, and improved quality of life. Despite challenges of funding shortfalls, natural disasters, and political insecurity, persistence of LF support groups in Haiti highlights the crucial role of group ownership by affected persons and the freedom to reinvent the support group concept in light of local social, cultural, and economic conditions.

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