Factors influencing the mental wellbeing of persons affected by leprosy in Sudurpashchim Pradesh, Nepal

Background: Leprosy is a neglected tropical disease which often results in (permanent) physical disabilities. The disease is highly stigmatized and this, in turn can cause mental ill health of the individuals affected by leprosy.

Research objective: The aim of this study was to investigate factors regarding personal, social/daily life and culture, influencing the mental wellbeing of leprosy-affected persons in Sudurpashchim Pradesh, Nepal, in order to develop interventions aimed at improving their mental wellbeing.

Methods: A qualitative approach using semi-structured, in-depth interviews and focus group discussions (FGDs) was employed. 25 participants affected by leprosy and 12 controls were included in in-depth interviews. In addition, 13 leprosy-affected persons participated in FGDs.

Results: We found that leprosy-affected persons with varying disability grades in Sudurpashchim Pradesh often experience mental distress and/or stigma. Participants reported physical weakness or pain, activity limitations, worries about their disease and its implications, feelings of shame, suicidal thoughts, and perceived and/or internalised stigma. Factors influencing mental wellbeing also included enacted stigma, social support, religion, participation (restrictions), the (in)ability to work, community attitudes, knowledge of leprosy and cultural beliefs around the disease.

Conclusions: Many (social/daily life, cultural and personal) factors can affect the mental wellbeing of leprosy-affected persons. Further research including a larger, random sample and expansion of mental health services in Sudurpashchim Pradesh are needed. Counselling after diagnosis with leprosy and interventions aiming at increasing participation and leprosy awareness/knowledge in the community are essential in order to reduce the stigma surrounding leprosy.