02910nas a2200325   4500000000100000008004100001653002300042653001300065653002300078653002500101653001000126653001100136653002800147653001300175653002000188653002200208100001400230700001400244700001400258700001400272700001200286700001100298700001000309245022200319856011600541300001300657490000700670520189300677022001402570       2016                            d10aprogram volunteers10aPatients10amanagement program10aLymphatic filariasis10aIndia10aGlobal10afocus group discussions10afamilies10aCommunity-based10acommunity members1 aCassidy T1 aWorrell C1 aLittle KM1 aPrakash A1 aPatra I1 aRout J1 aFox L00aExperiences of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India: an analysis of focus group discussions with patients, families, community members and program volunteers.  uhttp://www.plosntds.org/article/fetchObject.action?uri=info:doi/10.1371/journal.pntd.0004424&representation=PDF  ae00044240 v103 a<p><strong>BACKGROUND: </strong>Globally 68 million people are infected with lymphatic filariasis (LF), 17 million of whom have lymphedema. This study explores the effects of a lymphedema management program in Odisha State, India on morbidity and psychosocial effects associated with lymphedema.</p>

<p><strong>METHODOLOGY/PRINCIPAL FINDINGS: </strong>Focus groups were held with patients (eight groups, separated by gender), their family members (eight groups), community members (four groups) and program volunteers (four groups) who had participated in a lymphedema management program for the past three years. Significant social, physical, and economic difficulties were described by patients and family members, including marriageability, social stigma, and lost workdays. However, the positive impact of the lymphedema management program was also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the etiology of the disease. Program volunteers and community members stressed the role that the program had played in educating people, though interestingly, local explanations and treatments appear to coexist with knowledge of biomedical treatments and the mosquito vector.</p>

<p><strong>CONCLUSIONS/SIGNIFICANCE: </strong>Local and biomedical understandings of disease can co-exist and do not preclude individuals from participating in biomedical interventions, specifically lymphedema management for those with lymphatic filariasis. There is a continued need for gender-specific psychosocial support groups to address issues particular to men and women as well as a continued need for improved economic opportunities for LF-affected patients. There is an urgent need to scale up LF-related morbidity management programs to reduce the suffering of people affected by LF.</p>
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