Dealing with Stigma: Experiences of Persons Affected by Disabilities and Leprosy

Abstract

Persons affected by leprosy or by disabilities face forms of stigma that have an impact on their lives. This study seeks to establish whether their experiences of stigma are similar, with a view to enabling the two groups of people to learn from each other. Accounts of experiences of the impact of stigma were obtained using in-depth interviews and focus group discussion with people affected by leprosy and by disabilities not related to leprosy. The analysis shows that there are a lot of similarities in impact of stigma in terms of emotions, thoughts, behaviour, and relationships between the two groups. The main difference is that those affected by leprosy tended to frame their situation in medical terms, while those living with disabilities described their situation from a more social perspective. In conclusion, the similarities offer opportunities for interventions and the positive attitudes and behaviours can be modelled in the sense that both groups can learn and benefit. Research that tackles different aspects of stigmatization faced by both groups could lead to inclusive initiatives that help individuals to come to terms with the stigma and to advocate against exclusion and discrimination.

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

“…The selection, training and supervision of the lay and peer counsellors was crucial. They required specialist knowledge and it was still difficult for some counsellors to become effective [37], pointing to the need for more research on how to improve the selection and training of lay and peer counsellors. A counselling intervention needs to be sustainable, and since this intervention proved to be less sustainable than we hoped it will be vital to strengthen effective links between health professionals and lay and peer counsellors.…”

“…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.…”

Psychological and Psychosocial Consequences of Zoonotic Cutaneous Leishmaniasis among Women in Tunisia: Preliminary Findings from an Exploratory Study

“…The work of Nilforoushzadeh et al [15] shows that providing psychological care contributes effectively to improve the psychological and social well-being of these patients, and enhances their commitment to follow courses of treatment. Lusli et al [16,17] showed the benefit of psychosocial support like counselling on the leprosy-related stigma. Moreover, Peters et al [18,19] illustrated the success of a contact intervention in Indonesia to reduce leprosy-related stigma in the community.…”

Developing Signalong Indonesia: issues of happiness and pedagogy, training and stigmatisation

“…Although in Bahasa Indonesia there is no direct translation for the term 'stigmatisation' (Lusli et al 2015), the general meaning of a negative label was commonly understood. The anonymous questionnaire suggested a picture in which society (which here referred to formal government policies and practices) did not stigmatise but where stigmatisation was relatively common amongst teachers' own colleagues.…”