Changing stigmatisation of leprosy: an exploratory, qualitative life course study in Western Nigeria

Introduction: Renewed interest in health-related stigma has invigorated calls to understand factors and processes underlying stigma. However, few empirical studies explore the influences of structural discrimination and moral status on leprosy-related stigma. We investigated how sociocultural context and organisational policies and practices influenced the connotations of leprosy, sources of stigma and the changing social responses to leprosy in Western Nigeria.

Methodology: Ethnographic research conducted between 2008 and 2012 combined documents review with life history interviews of 21 individuals affected by leprosy and semistructured interviews with 26 community members in Western Nigeria. Interviews were audiotaped, transcribed verbatim and coded. Theoretical frameworks used to deepen social understandings of leprosy and responses to stigma included Link’s and Phelan’s conceptualisation of stigma and the concepts of structural discrimination and moral status.

Results: Findings showed that connotations of leprosy in Yorùbá culture included the following: (i) perception of leprosy as the most shameful and detested condition and (ii) symbolic association with filth and immoral behaviour that is dishonouring to Yorùbá identity. Secondary analysis of archival materials revealed four sources of stigma: cultural beliefs about leprosy, health promotion messages embedded in primary school books, religious teachings about leprosy and campaigns conducted by the leprosy service in 1950s. Contrary to the portrayal of Yorùbá attitudes to leprosy as entirely negative, we identified that people affected by leprosy were creating new life courses to counter existing cultural accounts of marginalisation. Emerging narratives of inclusion outlined five facilitators of acceptance namely, antileprosy treatment, good moral character, supportive family networks, livelihoods, and contribution to community survival.

Conclusion: Gaps highlighted by this study suggest that the global target of zero stigma and discrimination of leprosy will remain unattainable without better understanding of cultural significance(s) of leprosy and the local sources and underlying drivers of stigma that are crucial for developing context-specific stigma reduction interventions.