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

Cassidy, Tali; Worrell, Caitlin M; Little, Kristen; Prakash, Aishya; Patra, Inakhi; Rout, Jonathan; Fox, LeAnne M

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

Journal Article

2016

Journal Title

PLOS Neglected Tropical Diseases

Link to Journal

http://journals.plos.org/plosntds

Publisher

Public Library of Science

Publisher

University of Cape Town

Department

Department of Public Health and Family Medicine

Faculty

Faculty of Health Sciences

License

http://creativecommons.org/licenses/by/4.0

Abstract

Author Summary Around the world 68 million people are infected with lymphatic filariasis (LF), a mosquito-borne disease caused by filarial worms. The parasite can damage patients' lymphatic systems causing pain, infections and swollen limbs, known as lymphedema or, in more advanced stages, elephantiasis. Lymphedema management programs can help patients to deal with the physical and emotional effects of lymphedema and elephantiasis. We held a total of 24 focus groups to discuss the experiences of people with lymphedema in Odisha State, India who participate in such a program. Discussions were held with patients, family members of patients, community members and program volunteers. Significant social, physical and economic difficulties were described by patients and family members, including marriage-related issues, social stigma, and lost workdays. However, the positive impacts of the lymphedema management program were also emphasized, and many family and community members indicated that community members were accepting of patients and had some improved understanding of the cause of the disease. People were able to hold both a 'scientific' and a 'traditional' understanding of LF at the same time. The financial hardships that people described highlight the need for improved economic opportunities for lymphedema-affected patients. Support programs based in the community also have clear social and emotional benefits. There is an urgent need to scale up LF management programs to reduce the suffering of people affected by LF.