Emotions, Relationships and Behaviour: a Qualitative Study on Experiences of Stigma among Persons Affected by Leprosy in Northern Nigeria

Purpose: Leprosy is a highly stigmatised disease with far-reaching psychosocial and economic consequences. This study explored the social consequences of leprosy and the factors that drive stigma among persons affected by leprosy in northern Nigeria.

Method: The study used a cross-sectional design with a qualitative approach. Semi-structured in-depth interviews were conducted with 20 persons affected by leprosy. Data were collected from September to November 2020. ILEP’s four stigma domains (emotions, thoughts, behaviour and relationships) were used to develop the interview guide and to analyse the data. The framework approach to thematic analysis was performed.

Results: The study identified: (1) negative societal attitudes and behaviour towards persons affected by leprosy, (2) restrictions in social participation among affected persons, such as in communal eating, job opportunities and education, (3) negative impact of leprosy on marital life and marriage prospects, also experienced by family members, and (4) negative emotions such as sadness and despair. Some of the problems seemed to be caused by negative perceptions and a lack of knowledge of leprosy. The main coping strategies included adjustments in behaviour (e.g., marrying other persons affected by leprosy and communal eating amongst persons affected), and religion (by seeking consolation through faith in God/Allah).

Conclusion: High levels of stigma were experienced by the participants. This underscores the importance of sustained information, education and communication interventions via traditional and modern media, to fill knowledge gaps and address misconceptions and myths about leprosy.