Mental health and stigma in persons affected by Hansen’s disease and their families in rural Sitapur, India

Psychological problems are common among persons affected by Hansen’s disease, a chronic but treatable disease that remains endemic in India despite available and effective treatment. Stigmatisation can also lead to delayed care-seeking, which can impede eradication efforts and negatively impact the physical and psycho-social wellbeing of the affected person and their family. This study aimed to examine how stigma in society affect the mental health of persons with Hansen’s disease and their families in endemic villages of Sitapur, India. Semi-structured interviews were conducted to explore how different types of stigma experiences (internalised, anticipated, experienced and perceived) and stigma practices (stereotypes, prejudice, discriminatory behaviour) form in society and affect the mental health of persons affected by Hansen’s disease and their family members. The study was carried out in collaboration with GLRA India and conducted in an endemic district of India, Sitapur. In total, 22 participants were included with a 1:1 of persons affected and family members. Data was analysed via thematic pattern analysis using the Health Stigma and Discrimination (HSD) framework as a structure. Stereotypes and other negative beliefs about Hansen’s disease persisted, and persons affected by the disease and the interviewed family members experienced all types of stigma. Symptoms of anxiety and depression were commonly reported among both patients and family members. Misconceptions about the disease appeared prevalent among patients, families, doctors, and the community. Marriage opportunities were impacted, though segregation was limited. Non-disclosure and self-distancing emerged as coping strategies. The study confirmed the presence of stigma and mental health issues among those affected and their families. Despite misconceptions and fear of spread, family support was high which may serve as a counterbalance to the negative effects of stigma. Education and awareness are essential to combat stigma and improve health outcomes.