title: Experiences 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.
abstract: BACKGROUND
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors: School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.
authors: Tali
authors: T
authors: Cassidy
authors: Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America.
authors: Caitlin M
authors: CM
authors: Worrell
authors: Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America.
authors: Kristen
authors: K
authors: Little
authors: Church's Auxiliary for Social Action, Pusa Road, New Delhi, India.
authors: Aishya
authors: A
authors: Prakash
authors: Church's Auxiliary for Social Action, Pusa Road, New Delhi, India.
authors: Inakhi
authors: I
authors: Patra
authors: Church's Auxiliary for Social Action, Pusa Road, New Delhi, India.
authors: Jonathan
authors: J
authors: Rout
authors: Parasitic Diseases Branch, Division of Parasitic Diseases and Malaria, Center for Global Health, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America.
authors: LeAnne M
authors: LM
authors: Fox
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D004605:Elephantiasis, Filarial / Q000150:complications*; D005190:Family; D005260:Female; D017144:Focus Groups; D006801:Humans; D007194:India / Q000453:epidemiology; D008209:Lymphedema / Q000453:epidemiology / Q000209:etiology / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D012111:Residence Characteristics / Q000706:statistics & numerical data; D057545:Social Stigma; D014838:Volunteers / Q000523:psychology / Q000706:statistics & numerical data; D055815:Young Adult