The Impact of Leprosy on Prospects of Marriage of Women : An Exploratory Study in Eastern Nepal.

Background: In Nepal marriage is the norm for men and women and the arranged marriage is still customary. In the Nepali culture gender roles are apparent: women play a subordinate role to males, and the main demands of a wife is to perform household chores and to look after the family in-law. In Nepal, leprosy is a major public health problem: it is one of the countries in South East Asia in which leprosy remains endemic. Leprosy can cause permanent visible impairments that induce stigmatizing behaviour. Women affected by leprosy may experience a double burden; the burden of being affected by leprosy and the burden of gender inequalities. In the literature not much is known about life before marriage and leprosy related factors that influence marital prospects of women in Eastern Nepal.

Objective: This exploratory study aims to contribute to the current body of knowledge by gaining profound and comprehensive insight into the possible influence of leprosy on prospects of marriage of leprosy-affected women in rural areas of Eastern Nepal. Factors related to body functions & structures, personal factors and environmental factors were identified from the narratives of affected women.

Methodology: In this exploratory study a mixed design was used. Quantitative socio-demographic data was collected and qualitative data was obtained by means of semi-structured in-depth interviews. A total of 30 unmarried women between the ages of 18 and 35 years were included. Among these were leprosy-affected women, with- and without visible signs of the disease; women with a physical disability; and women from the general population. The results from those three groups were compared in order to assess the attributing influence of stigma on marital prospect. Subsequently, three expert interviews were conducted. Interviews were conducted with the help of a native Nepali interpreter, transcribed into English and analyzed by means of opencoding in the program MAXQDA.

Results: Women with leprosy expect that they have to make compromises in their choice of partner. Leprosy related factors that were identified to be of influence on marital prospects are: disclosure of the disease; the level of knowledge about leprosy in affected women and in the society; fear and lack of understanding in affected persons and in society; the level of self-esteem; importance attributed to marriage; independency; physical functioning; attitude of the family and attitude of the community; the cultural definition of female roles within society; employment; enacted stigma; and self-stigma. The most striking findings were the lack of knowledge about leprosy and its cause, causing fear in affected persons and in the community, and leading to stigmatizing behaviour. Moreover, in the context of marital prospects, assumed physical weakness and subsequent incapacity in performing household chores are strong determinants for marital prospects. Problems that were apparent mainly related to leprosy-associated disability and showed great resemblance to the problems described by the group of physically disabled women. Employment gains respect from family- and community members, and is expected to positively impact marital prospects. Finally, violence against women was also an issue, especially to women who considered themselves as physically weak or compromised.

Conclusion: This study shows that women affected by leprosy experience an added burden of (self-) stigma when it comes to marital prospects. Nonetheless, in the specific context of marital prospects, physical functioning seems to be a stronger determinant. The focus of future interventions should be on improving levels of knowledge about leprosy and counseling for affected women and their social contacts to improve respect and understanding and reduce violence and abuse. Ultimately, early diagnosis to prevent permanent impairments and provision of employment for affected women should be encouraged.