Leprosy is a chronic infectious disease that has an impact on the Health-Related Quality of Life (HRQOL) of sufferers as well as their children. To date, no study has investigated the effects of parental leprosy on the well-being of adolescent children.
A cross-sectional study was conducted in the Lalitpur and Kathmandu districts of Nepal. Adolescents with leprosy-affected parents (n=102; aged 11-17 years) and those with parents unaffected by leprosy (n=115; 11-17 years) were investigated. Self-reported data from adolescents were collected using the Kinder Lebensqualität Fragebogen (KINDLR) questionnaire to assess HRQOL, the Center for Epidemiological Studies-Depression Scale (CES-D), and the Rosenberg Self-esteem Scale (RSES). Analysis of covariance (ANCOVA) was used to compare scores between the two groups. Multiple regression analysis was conducted to explore the determinants of HRQOL for adolescents with leprosy-affected parents.
ANCOVA revealed that the KINDLR and RSES scores were significantly lower among adolescents with leprosy-affected parents compared with unaffected parents. The CES-D score was significantly higher among adolescents with leprosy-affected parents than for adolescents with unaffected parents. The KINDLR scores for adolescents with both parents affected were significantly lower than the scores for those with one parent affected. Multiple regression analysis revealed that adolescents with leprosy-affected parents who had higher levels of depressive symptoms were more likely to have lower KINDLR scores. A similar result was seen for adolescents where both parents had leprosy.
Adolescents with leprosy-affected parents had higher levels of depressive symptoms, lower levels of self-esteem, and lower HRQOL compared with adolescents whose parents were unaffected by leprosy.
This paper explores the history of Yunosawa Village for Hansen’s disease patients in Kusatsu Town, which is famous for its hot springs and located in a mountainous area of Gunma Prefecture, Japan. Yunosawa Village was initially formed by Kusatsu Town government as a settlement for a small number of patients in 1869, but later became the biggest “open leprosy colony” for Hansen’s disease patients in modern Japan. Patients in Yunosawa gradually constructed their own regional community and expanded their presence in Kusatsu as part of the town. Although townspeople in Kusatsu made several attempts to remove patients in Yunosawa to a more remote area away from the town center so that they would be out of sight of visitors, townspeople in Kusatsu had a long history of treating Hansen’s disease patients as customers of the hot springs, which enabled them to understand the nature of the disease through their own experience. This “folk epidemiology” created a “symbiotic” relationship between patients in Yunosawa and townspeople for nearly 60 years until the national government finally closed Yunosawa in 1941.