‘People like me don't make things like that’: Participatory video as a method for reducing leprosy-related stigma

Abstract

The Stigma Assessment and Reduction of Impact project aims to assess the effectiveness of stigma-reduction interventions in the field of leprosy. Participatory video seemed to be a promising approach to reducing stigma among stigmatized individuals (in this study the video makers) and the stigmatisers (video audience). This study focuses on the video makers and seeks to assess the impact on them of making a participatory video and to increase understanding of how to deal with foreseeable difficulties. Participants were selected on the basis of criteria and in collaboration with the community health centre. This study draws on six qualitative methods including interviews with the video makers and participant observation. Triangulation was used to increase the validity of the findings. Two videos were produced. The impact on participants ranged from having a good time to a greater sense of togetherness, increased self-esteem, individual agency and willingness to take action in the community. Concealment of leprosy is a persistent challenge, and physical limitations and group dynamics are also areas that require attention. Provided these three areas are properly taken into account, participatory video has the potential to address stigma at least at three levels - intrapersonal, interpersonal and community - and possibly more.

Strategies to reduce stigma related to visible chronic skin diseases: a systematic review

“…Studies were published between 1998 and 2018, 14 were conducted in low‐ and middle‐income countries and 5 in developed countries. The most represented countries were Indonesia, India and the United Kingdom . Study designs varied considerably: 3 (cluster‐)randomized controlled trials, 2 quasi‐experimental studies, 3 case‐control studies and 3 cohort studies were supplemented by 5 qualitative studies, 2 case studies and a secondary data analysis .…”

“…The 19 included studies referred to 15 different intervention programmes. One project pursued 4 different intervention approaches described in 4 publications; results of another programme were described in 2 publications . All interventions aimed at reducing stigmatization for a particular group of patients with a visible chronic skin disease.…”

“…All interventions aimed at reducing stigmatization for a particular group of patients with a visible chronic skin disease. Of the 15 programmes, 9 addressed patients with leprosy while 1 programme each focused on patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia . Ten studies focussed on the reduction in self‐stigma, 4 on public stigma by addressing the general public or specific groups such as schoolchildren, medical staff or family members .…”

“…Ten studies focussed on the reduction in self‐stigma, 4 on public stigma by addressing the general public or specific groups such as schoolchildren, medical staff or family members . Another 5 studies aimed at reducing public stigma and self‐stigma . Same as the target group, the sample size under study varied considerably and ranged from 2 to 1711 participants.…”

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

“…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. These interventions are likely to work for CL as well.…”