Dehabilitation among Leprosy Affected Persons and Lived Experiences: A Mixed-Method Study

Despite advancements in medical sciences, leprosy is still a public health challenge in a country like India. Leprosy results not only in physical problems but also has psychological, social, and behavioural consequences. Stigma related to leprosy leads to restrictions in participation and causes emotional harm. The combination of all these leads to the dehabilitation of leprosy-affected persons. This study aimed to assess leprosy-affected persons’ social participation and understand their lived experiences, treated at their homes in the Haridwar and Dehradun district areas of Uttarakhand. A sequential mixed-method study included participants who had leprosy in the past three years and were on treatment or treated at their homes. Participants were interviewed with the help of a structured questionnaire including a participation scale. Fifteen participants were interviewed about their lived experiences with leprosy. Quantitative data was analysed using proportion and chi-square tests. For qualitative, inductive codes were generated from transcripts and analysed with a thematic approach. A total of 108 participated in the study. Thirty per cent had mild to moderate restrictions on social participation. Those with visual disability were found to have a comparatively higher score on the participation scale than those with no disability. Six themes generated were delayed diagnosis, coping mechanism, change in daily routine, health problems, perception and stigma related to the disease. One-third had mild to moderate restrictions, but they were related to physical health problems, not social exclusion. Many cases reported delayed diagnosis due to misdiagnosis. Participants felt supported by their family members. Some participants had perceived fear and stigma of the disease, but none of them had experienced the stigma till date. Some spoke about the disease to others, while few were seeking alibis.