Stigma and stigma-induced stress in filarial lymphoedema patients in Puducherry, India

Abstract

Introduction: The morbidity management and disability prevention (MMDP) strategy for elimination of lymphatic filariasis (ELF) focuses on alleviating the sufferings of about 36 million filariasis patients living in 49 endemic countries. At present, available quality of life questionnaires are not adequate to address the stigma and stress of filarial lymphoedema (FLE) patients. Therefore, a comprehensive and a robust stigma and stress assessment tool needs to be developed. Methods: We developed 49 item SARI-FLE-Version-2 questionnaire for stigma assessment and 20 item PSS-FLE-Version-2 questionnaire for stress assessment and tested it among different grades of FLE patients. We followed the Likert scale scoring system and conducted a statistical analysis using SPSS IBM version 25.0. Results: Of the 80 lymphatic filariasis (LF) patients assessed, 35.0%, 42.5%, and 22.5% had grades 2, 3, and 4 LE of the lower extremity, respectively. The developed stigma tool had an excellent internal consistency, as indicated by high Cronbach alpha values for all six domains. There was a significant correlation (p < 0.05) between different stigma domains. In three domains (cognitive function, social stigma, and experienced stigma), the mean stigma scores were significantly higher for the grade 4 patients compared to grade 2 patients (p < 0.02). Conclusion: Stigma and stress assessment tools in the form of 49 item SARI-FLE-Version-2 and 20 item PSS-FLE-Version-2 questionnaires are reliable in quantifying the stigma and stress of LF patients. There is a scope to incorporate these tools in the MMD

The Role of Inflammation in Lymphedema: A Narrative Review of Pathogenesis and Opportunities for Therapeutic Intervention

“…For instance, a study conducted in the Dominican Republic and Ghana demonstrated that women with filarial lymphedema face extreme stigmatization relating to appearance, perceived care burden, and fear of contagion. This stigmatization and associated negative self-perception of appearance have also been documented in other global regions including India, Nigeria, and the United States [53][54][55][56]. These psychosocial experiences interact with the physical characteristics of lymphedema to create a complex network of experiences that implicate patient well-being, regardless of lymphedema sub-type or global region.…”