From social curse to social cure: A self‐help group community intervention for people affected by leprosy in Nepal

Abstract

Leprosy is endemic in Nepal and disproportionately affects the most marginalized. Leprosy related stigma can be characterized as a social curse, because those affected are excluded from group life and social participation which has severe implications for psychological health. The Nepal Leprosy Trust run a community-based self-help group intervention that aims to develop a new empowered identity to re-establish access to multiple group memberships' through social participation. In this applied cross-sectional study, informed by the Social Identity Model of Identity Change, we assess this intervention. Participants (N = 98) were members of self-help groups in 10 rural villages in Nepal, and completed measures of self-help group identification, access to multiple groups, internalized stigma and wellbeing. Mediation models indicated that self-help group identification was indirectly linked to reduced stigma and increased well-being through access to multiple groups. Supporting the Social Identity Model of Identity Change, we present novel evidence that group-based interventions can offer new valued identities that link to social cure resources, even in the most adverse circumstances. Please refer to the

A resilience building collaboration: A social identity empowerment approach to trauma management in leprosy-affected communities.

“…Our findings add weight to the tentative conclusions drawn in our prior work (Jay et al, 2021). They allow us to say with more confidence that a new internalized self-help group membership is empowering because it facilitates access to knowledge about health and access to important groups like family, community, and occupational groups.…”

“…Most obviously, people may have to lose or let go of old identities because changed circumstances requires them to give up particular group memberships (Walsh et al, 2014). This occurs for example when someone incurs a disability that requires them to rescind a valued occupational identity (Jay et al, 2021; Muldoon, Walsh, et al, 2019). Equally, stigmatizing trauma is linked to the destruction of valued religious and community identities, for example as reported by Muslim women raped during the Balkan conflict (e.g., Kellezi & Reicher, 2012; Ramanathapillai, 2006).…”

Health literacy among self‐help leprosy group members reduces stereotype endorsement and stigma‐related harm in rural Nepal

“…Interest in the study, as it was an unusual occurrence, was very high, as was consent to participate. However, participants were advised to answer only those questions that they were willing to answer and so there are some missing data points where participants chose not to answer (See also Jay et al., 2021 for discussion of potential empowerment from study participation).…”

“…were advised to answer only those questions that they were willing to answer and so there are some missing data points where participants chose not to answer (See also Jay et al, 2021 for discussion of potential empowerment from study participation).…”

The nuances of “the social cure” for people who experience psychosis

“…Positives of group identification have been found for other stigmatised identities, for example for people affected by leprosy (Jay et al, 2021). International organisations such as Mad Pride and The Hearing Voices Network aim to support recovery through peer support and stigma resistance (Branitsky, 2017;Dillon & Hornstein, 2013;Longden et al, 2018).…”