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the sds which consists of 28 items was used to assess the perceived shame of leprosy among persons affected, their close contacts, community members and health care workers. the sds items are divided into two subscales: the first subscale consists of 19 items on the perceived shame of leprosy among persons affected with leprosy (e.g. shame from being cut off from society, etc.) and the second subscale consists of nine items on the perceived shame of leprosy among close contacts (e. shame from being shunned by people, etc.). the sds has been used in a number of leprosy studies in india and indonesia [ 26, 27 ].
the cross-sectional study design consists of a population-based survey, the leprosy operational research alliance household study (lorah) in india and the indonesia leprosy observational study (ilos-in). the survey was conducted in two leprosy endemic districts in india and in three districts in indonesia.
an exemption statement was included in the informed consent forms. the ethical committee of the two universities of amsterdam and one university in indonesia approved the study. the sampling frame for the population-based survey were list of persons affected by leprosy, who received support from the national leprosy programme at the time of the study. we calculated a sampling-coverage of at least 80% for all variables. behaviour changes during the last five years
respondents were asked whether they changed some of their behaviour after being aware of leprosy, that is, changed the way they washed their hands, ate, wore clothes or shoes, played sports, and sought treatment. the answers were dichotomised (0: no change and 1: yes, i changed some of my behaviour).
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