Abstract
Background People affected with leprosy are severely stigmatised, restricting their participation at home, in communities, and at the workplace. It further aggravates their stigma levels as participation restriction causes emotional harm, economic disadvantages, and social ostracism, in addition to hampering treatment. Objectives To measure the correlation of various sociodemographic factors influencing participation restriction of leprosy-affected persons and the impact of interventions through counselling for preventing social exclusion. Design A cross-sectional pre- and post-counselling survey about social participation of leprosy-affected persons. Methods The P-scale was used to measure the participation restriction of 120 leprosy-affected persons, living in former leprosy colonies. Group counselling sessions were conducted to improve social participation. Various statistical tools were used to analyse the P-scale scores. Results Every leprosy-affected person reported some level of participation restriction; severe to extreme participation restriction was found in most, with a few having mild or moderate restriction. The demographic profiles of leprosy-affected persons influence the severity of the participation restriction. Participation restriction in females is higher than in males; those over 40 years of age face more restrictions than those who are younger; disabled and unemployed persons reported higher participation restriction than those who are part-time employees or homemakers, and the unmarried reported higher restrictions than those who are married. Counselling resulted in notable improvements in social participation. Conclusion Counselling not only has an overall positive impact on social participation but its impact was highly influenced by demographic variables, particularly amongst those who are disabled or unemployed.
Highlights
After the introduction of Multi-Drug Therapy (MDT) and the launch of a five year ‘Global Leprosy Strategy 2016–2020’ by WHO, a significant reduction in the number of new leprosy cases and complications in the prevalent cases has been observed
Facilities such as dedicated leprosy hospitals/colonies and the provision of free rations to leprosy affected persons have been operational in the area, minimal efforts have been made to address secondary psychosocial disabilities because of the chronic nature of the disease and the unsightly disfigurement, which results in prejudice, stigmatisation and social exclusion of those affected
These were patients residing in leprosy colonies at Srinagar and Jammu, leprosy hospitals in various districts and patients residing at their native homes
Summary
After the introduction of Multi-Drug Therapy (MDT) and the launch of a five year ‘Global Leprosy Strategy 2016–2020’ by WHO, a significant reduction in the number of new leprosy cases and complications in the prevalent cases has been observed. In Jammu and Kashmir, the northern part of India, leprosy has laid down its footprint since historical times. Facilities such as dedicated leprosy hospitals/colonies and the provision of free rations to leprosy affected persons have been operational in the area, minimal efforts have been made to address secondary psychosocial disabilities because of the chronic nature of the disease and the unsightly disfigurement, which results in prejudice, stigmatisation and social exclusion of those affected. Stigmatisation, depression, anxiety and social exclusion contribute to increased or sustained chronic debility in leprosy patients. Exact figures for new and prevalent cases of leprosy in the area are conflicting; a survey conducted by the current authors estimates a number over 700
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