Background Although Nepal has officially eliminated leprosy, the consequences of leprosy are still abundantly present. The stigma surrounding leprosy has a large negative impact on people’s lives. Self-Help Groups (SHGs) can be a tool to reduce stigma, but might also be stigma enhancing by amplifying the label of leprosy. The objective of this research was to assess levels of and experiences with stigma in leprosy-affected persons. Furthermore, the effects of participating in a SHG on stigma are explored.
Methods The EMIC questionnaire (perceived stigma) and Participation scale (social participation) were administered in 80 leprosy-affected persons. In addition, 17 respondents and three experts were interviewed in-depth.
Results The quantitative analysis showed a significant effect of participation in a SHG on the level of perceived stigma. No such effect was found for participation. The in-depth interviews revealed a large amount of stigma, mainly internalised and perceived. Discrimination still occurs, yet in lesser degree than in earlier days. SHGs have a focus on saving and credit and consist of a mix of leprosy-affected persons and people with various other disabilities. In general, participants of SHGs are satisfied with their membership, it gives them self-confidence and economic independence. Community members seem to be neutral or positive about the SHGs, no evidence was found of enhancement of stigma.
Discussion Participating in a SHG with other persons affected by leprosy and people with disabilities contributes to a reduction in perceived stigma and increases in self-esteem. The next step will be to make SHGs more inclusive to others. Additional research should be done on how to further increase the benefits of SHGs.
Background Although Nepal has officially eliminated leprosy, the consequences of leprosy are still abundantly present. The stigma surrounding leprosy has a large negative impact on people’s lives. Self-Help Groups (SHGs) can be a tool to reduce stigma, but might also be stigma enhancing by amplifying the label of leprosy. The objective of this research was to assess levels of and experiences with stigma in leprosy-affected persons. Furthermore, the effects of participating in a SHG on stigma are explored.
Methods The EMIC questionnaire (perceived stigma) and Participation scale (social participation) were administered in 80 leprosy-affected persons. In addition, 17 respondents and three experts were interviewed in-depth.
Results The quantitative analysis showed a significant effect of participation in a SHG on the level of perceived stigma. No such effect was found for participation. The in-depth interviews revealed a large amount of stigma, mainly internalised and perceived. Discrimination still occurs, yet in lesser degree than in earlier days. SHGs have a focus on saving and credit and consist of a mix of leprosy-affected persons and people with various other disabilities. In general, participants of SHGs are satisfied with their membership, it gives them self-confidence and economic independence. Community members seem to be neutral or positive about the SHGs, no evidence was found of enhancement of stigma.
Discussion Participating in a SHG with other persons affected by leprosy and people with disabilities contributes to a reduction in perceived stigma and increases in self-esteem. The next step will be to make SHGs more inclusive to others. Additional research should be done on how to further increase the benefits of SHGs.