Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

Abstract

Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their 'agency'. The aim is to provide recommendations for stigma-reduction interventions. Methods:The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of 'disclosure' were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 6Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

Factors preventing early case detection for women affected by leprosy: a review of the literature

“…Where these historic traditions surround leprosy, the community stigma attached to those affected can be huge, yet these attitudes are not necessarily gender neutral. The above studies and others [17,20], including one in India, suggest that there is an expectation for women to visit a traditional healer before, if not solely, to cure the spiritual or traditional problem of leprosy. The extent of this finding varies throughout the articles.…”

“…The extent of this finding varies throughout the articles. However there is a predominant impression, made explicit through one study in Indonesia [17], that women are more inclined to use religion or spirituality as a method of coping with societal stigma and finding solace throughout the discrimination, although the literature is not conclusive how much more this is for women than men. Schuller et al’s [19] study in Indonesia makes evident that women are never invited to attend community gatherings due to their fear of the affected person, yet the community had no problem with allowing access to religious meetings.…”

“…Peters et al [17] pick this concept up in more detail, considering narratives around concealment of leprosy in women in Indonesia. They studied 53 women and found that the women who had concealed their illnesses the most more frequently reported feeling sadness, shame, low self-esteem and depression, and that these feelings often result in self-isolation.…”

The Impact of a Rights-Based Counselling Intervention to Reduce Stigma in People Affected by Leprosy in Indonesia

“…An exploratory study was conducted (see [3,10,37]) and based on its findings a counselling practice was drafted and piloted, which led to the Rights-Based Counselling Module (RBCM) (see Box 1). This module can be managed by lay and peer counsellors.…”

“…The girl was affected by leprosy, which remains a stigmatized condition worldwide. Persons or their family who are affected by a stigmatized condition often try to conceal it [1–3]. There are, however, costs to concealment: the burden is carried alone, managing concealment is onerous and not being informed might evoke negative feelings and emotions in the persons involved (as happened with this girl) [4].…”