Evaluation of social stigma and interventions for stigma reduction in Hansen’s disease: a prospective, observational study
Objective
To describe and understand how stigma affects the lives of individuals affected by Hansen’s disease and to assess the effectiveness of interventions for preventing or addressing social stigma.
Methods
This prospective observational study enrolled 34 Hansen’s patients attending a tertiary-care dermatology clinic. The study was based on mixed methods. Quantitative data concerning social stigma were assessed using the Stigma Assessment and Reduction of Impact (SARI) questionnaire scale, while descriptive data used simple and self-explanatory pre-validated questionnaires that measured the effectiveness of stigma-reduction interventions such as counselling, socioeconomic development (SED), and contact. Quantitative variables were expressed as means and SDs. Qualitative data were expressed as percentages or proportions. Suitable statistics were applied, based on the distribution of data.
Results
Calculated SARI domain means showed disclosure concerns were most prominent (4.00 ± 3.06), followed by internalized stigma (2.94 ± 2.53), experienced stigma (0.88 ± 1.67), and anticipated stigma (0.15 ± 0.36); the total mean of SARI scores was 7.97 ± 5.79. On interventions: 27/34 (79%) patients knew the meaning of counselling, 23/34 (68%) had received disease-related counselling, but only 6/34 (18%) had received counselling addressing behavior/self-esteem; 16/34 (47%) participated in contact activities; 12/34 (35%) were involved in SED-related social interactions, and 9/34 (26%) had received financial aid from NGOs. The results demonstrate substantial concern about disclosure coupled with incomplete provision of psychosocial and livelihood support.
Conclusion
In this study disclosure-related stigma predominated, while implementation of counselling, SED, and contact interventions was inconsistent. Strengthening delivery and evaluation of the three key intervention pillars is essential to mitigate stigma and improve comprehensive care for Hansen’s patients.