Abstract
Objective To investigate factors that influence the mental wellbeing of persons affected by leprosy in Far-Western Nepal. Methods The study used a cross-sectional design with a qualitative approach. Semi-structured, in-depth interviews and focus group discussions covering topics such as feelings towards and experiences with leprosy, mental wellbeing, knowledge about leprosy, social life, community, culture and future outlook were employed. The data were analysed using Framework Analysis and Thematic Open Analysis. Results A total of 25 persons affected by leprosy were included in the in-depth interviews and 13 persons participated in focus group discussions. We found that participants often experienced stigma and/or mental distress. 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 included discrimination, social support, religion, participation (restrictions), (in)ability to work, community attitudes, knowledge of leprosy and cultural beliefs about the disease. Conclusions This study revealed that the majority of participants faced leprosy-related stigma, physical discomfort, restrictions in social participation and mental distress. We recommend the development of interventions such as counselling after diagnosis with leprosy, increasing leprosy awareness and knowledge, addressing negative attitudes and beliefs in the community and stimulating social participation.
Highlights
Leprosy is a neglected tropical disease (NTD), caused by Mycobacterium leprae
Exclusion criteria were: unable or unwilling to give informed consent, unable to understand and/or speak Nepali, or impaired or marginalized because of a comorbidity or disease other than leprosy as we were interested in factors that influenced the mental wellbeing of individuals affected by leprosy
A total of 38 persons affected by leprosy were included in the study: 25 persons participated in in-depth interviews (IDIs) and 13 participated in focus group discussions (FGDs)
Summary
Leprosy is a neglected tropical disease (NTD), caused by Mycobacterium leprae. Leprosy is still endemic in many parts of the world, with over 200,000 new patients diagnosed annually.[1]. The disease is believed to be transmitted predominantly via the respiratory route and mainly affects the skin and peripheral nerves. Nerve damage may result in (often permanent) physical impairments, including visible disfigurements.[2,3]. Leprosy can be cured with multidrug therapy (MDT), permanent physical impairments have often already been incurred due to lack of timely diagnosis and treatment.[4]. In addition to physical impairments, persons affected by leprosy often experience social stigma.[5–7]. The stigma associated with leprosy can affect various aspects of a person’s life, such as employment, marriage and social participation.[8–11]. Many persons affected by leprosy report being socially rejected and insulted,[12–14] which may result in mental ill health.[15] In addition to physical impairments, persons affected by leprosy often experience social stigma.[5–7] The stigma associated with leprosy can affect various aspects of a person’s life, such as employment, marriage and social participation.[8–11] Many persons affected by leprosy report being socially rejected and insulted,[12–14] which may result in mental ill health.[15]
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