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.
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. METHODOLOGY/PRINCIPAL FIN...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Public Library of Science (PLoS)
2016-02-01
|
| Series: | PLoS Neglected Tropical Diseases |
| Online Access: | http://europepmc.org/articles/PMC4744078?pdf=render |
| _version_ | 1819129469742350336 |
|---|---|
| author | Tali Cassidy Caitlin M Worrell Kristen Little Aishya Prakash Inakhi Patra Jonathan Rout LeAnne M Fox |
| author_facet | Tali Cassidy Caitlin M Worrell Kristen Little Aishya Prakash Inakhi Patra Jonathan Rout LeAnne M Fox |
| author_sort | Tali Cassidy |
| collection | DOAJ |
| description | 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. METHODOLOGY/PRINCIPAL FINDINGS: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/SIGNIFICANCE: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. |
| first_indexed | 2024-12-22T08:44:13Z |
| format | Article |
| id | doaj.art-b8bee60a851544c1a496e5068738f2c2 |
| institution | Directory Open Access Journal |
| issn | 1935-2727 1935-2735 |
| language | English |
| last_indexed | 2024-12-22T08:44:13Z |
| publishDate | 2016-02-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS Neglected Tropical Diseases |
| spelling | doaj.art-b8bee60a851544c1a496e5068738f2c22022-12-21T18:32:09ZengPublic Library of Science (PLoS)PLoS Neglected Tropical Diseases1935-27271935-27352016-02-01102e000442410.1371/journal.pntd.0004424Experiences 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.Tali CassidyCaitlin M WorrellKristen LittleAishya PrakashInakhi PatraJonathan RoutLeAnne M FoxBACKGROUND: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. METHODOLOGY/PRINCIPAL FINDINGS: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/SIGNIFICANCE: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.http://europepmc.org/articles/PMC4744078?pdf=render |
| spellingShingle | Tali Cassidy Caitlin M Worrell Kristen Little Aishya Prakash Inakhi Patra Jonathan Rout LeAnne M Fox 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. PLoS Neglected Tropical Diseases |
| 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. |
| title_full | 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. |
| title_fullStr | 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. |
| title_full_unstemmed | 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. |
| title_short | 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. |
| title_sort | 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 |
| url | http://europepmc.org/articles/PMC4744078?pdf=render |
| work_keys_str_mv | AT talicassidy experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers AT caitlinmworrell experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers AT kristenlittle experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers AT aishyaprakash experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers AT inakhipatra experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers AT jonathanrout experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers AT leannemfox experiencesofacommunitybasedlymphedemamanagementprogramforlymphaticfilariasisinodishastateindiaananalysisoffocusgroupdiscussionswithpatientsfamiliescommunitymembersandprogramvolunteers |