Background Many health conditions perceived to be contagious, dangerous or incurable, or resulting in clearly visible signs, share a common attribute – an association with stigma and discrimination. While the etiology of stigma may differ between conditions and, sometimes, cultural settings, the manifestations and psychosocial consequences of stigma and discrimination are remarkably similar. However, the vast majority of studies measuring stigma or addressing stigma through interventions employ a disease-specific approach. Main body The current paper opposes this siloed approach and advocates a generic concept of ‘health-related stigma’ in both stigma measurement and stigma interventions. Employing a conceptual model adapted from Weiss, the current paper demonstrates the commonalities among several major stigmatized conditions by examining how several stigma measurement instruments, such as the Social Distance Scale, Explanatory Model Interview Catalogue, Internalized Stigma of Mental Illness, and Berger stigma scale, and stigma reduction interventions, such as information-based approaches, contact with affected persons, (peer) counselling, and skills building and empowerment, were used successfully across a variety of conditions to measure or address stigma. The results demonstrate that ‘health-related stigma’ is a viable concept with clearly identifiable characteristics that are similar across a variety of stigmatized health conditions in very diverse cultures. Conclusion A more generic approach to the study of health-related stigma opens up important practical opportunities – cross-cutting measurement and intervention tools are resource saving and easier to use for personnel working with multiple conditions, allow for comparison between conditions, and recognize the intersectionality of many types of stigma. Further research is needed to build additional evidence demonstrating the advantages and effectiveness of cross-condition approaches to stigma measurement and interventions.

Background With the introduction of new interventions to prevent leprosy, such as post-exposure prophylaxis (PEP) given to contacts of leprosy patients, it is necessary to update our understanding of knowledge and perception of leprosy among the populations where these interventions will be introduced, in order to tailor communication optimally to the current situation. This study is a baseline study of the PEP++ project and aimed to assess the knowledge, attitudes and practices regarding leprosy in Fatehpur, India. Methodology The study used a community-based cross-sectional design with a mixed-methods approach. We assessed knowledge, attitudes, and practices with the KAP measure, and stigma with the Explanatory Model Interview Catalogue community stigma scale (EMIC-CSS) and the Social Distance Scale (SDS). In addition, semi-structured interviews and focus group discussions were conducted with all participant groups. The quantitative data were analysed using stepwise multivariate regression. The qualitative data were analysed using open, inductive coding and content analysis. Findings A total of 446 participants were included in the study: 100 persons affected by leprosy, 111 close contacts, 185 community members and 50 health care workers. In addition, 24 in-depth interviews were conducted and 35 people were included in focus group discussions. 12.5% of the participants had adequate knowledge of leprosy, while 22% had poor knowledge. Knowledge on cause (answered correctly by 10% of the participants), mode of transmission (5%) and symptoms of leprosy (16%) was especially poor. The mean EMIC-CSS score was 15.3 (95%CI 14.6–16.0) and mean SDS score 7.2 (95%CI 6.6–7.8). Better knowledge of leprosy was associated with lower levels of social distance towards persons affected by leprosy. Conclusion This study revealed poor knowledge regarding leprosy and high levels of stigma and fear and desire to keep social distance towards persons affected by leprosy. Community education that takes cultural beliefs, knowledge gaps and fears into consideration could improve knowledge, reduce misconceptions and positively influence the perception of leprosy.

Leprosy has long-term consequences related to impairment and stigma. This includes a major impact on mental health. This study aims to consolidate current evidence regarding the mental health impact of leprosy on affected persons and their family members. In addition, determinants influencing mental health outcomes among leprosy-affected persons and effective interventions are examined. A keyword-based search was conducted in PubMed, Web of Science, Scopus, PsycINFO, Infolep and InfoNTD; additional literature was also considered. Articles presenting primary data involving leprosy-affected persons or their family members experiencing mental conditions were included. Independent extraction of articles was executed using predefined data fields. Articles were sorted according to relevance. In total, 65 studies were included in this systematic review. Multiple psychiatric morbidities have been identified among leprosy-affected persons, including depression, anxiety disorders and suicide (attempts). Additional factors were found that may impact mental health. Moreover, studies found that demographic factors, lifestyle and disease-specific factors and stigma and discrimination impact mental health. Depressive symptoms and low self-esteem were identified among children of leprosy-affected persons. In addition, interventions were identified that could improve the mental wellbeing of leprosy patients. Depressive disorders and anxiety disorders were found to be very common among persons affected by leprosy. Feelings such as fear, shame and low self-esteem are also experienced by those affected, and their children. Further research is necessary to ensure that mental health impact is included when determining the burden of disease for leprosy, and to relieve this burden.

Background Understanding how knowledge, attitudes and practices regarding leprosy differ in endemic countries can help us develop targeted educational and behavioural change interventions. This study aimed to examine the differences and commonalities in and determinants of knowledge, attitudes, practices and fears regarding leprosy in endemic districts in India and Indonesia. Principle findings A cross-sectional mixed-methods design was used. Persons affected by leprosy, their close contacts, community members and health workers were included. Through interview-administered questionnaires we assessed knowledge, attitudes, practices and fears with the KAP measure, EMIC-CSS and SDS. In addition, semi-structured interviews and focus group discussions were conducted. The quantitative data were analysed using stepwise multivariate regression. Determinants of knowledge and stigma that were examined included age, gender, participant type, education, occupation, knowing someone affected by leprosy and district. The qualitative data were analysed using open, inductive coding and content analysis. We administered questionnaires to 2344 participants (46% from India, 54% from Indonesia) as an interview. In addition, 110 participants were interviewed in-depth and 60 participants were included in focus group discussions. Knowledge levels were low in both countries: 88% of the participants in India and 90% of the participants in Indonesia had inadequate knowledge of leprosy. In both countries, cause, mode of transmission, early symptoms and contagiousness of leprosy was least known, and treatment and treatability of leprosy was best known. In both countries, health workers had the highest leprosy knowledge levels and community members the highest stigma levels (a mean score of up to 17.4 on the EMIC-CSS and 9.1 on the SDS). Data from the interviews indicated that people were afraid of being infected by leprosy. Local beliefs and misconceptions differed, for instance that leprosy is in the family for seven generations (Indonesia) or that leprosy is a result of karma (India). The determinants of leprosy knowledge and stigma explained 10–29% of the variability in level of knowledge and 3–10% of the variability in level of stigma. Conclusion Our findings show the importance of investigating the perceptions regarding leprosy prior to educational interventions in communities: even though knowledge levels were similar, local beliefs and misconceptions differed per setting. The potential determinants we included in our study explained very little of the variability in level of knowledge and stigma and should be explored further. Detailed knowledge of local knowledge gaps, beliefs and fears can help tailor health education to local circumstances.

Background. Leprosy is one of the most stigmatized diseases known today. The stigma surrounding leprosy can be a major burden and affects many dimensions of a person's life, including intimate relationships. We aimed to investigate the experiences of women affected by leprosy regarding marital life and sexuality, comparing these to the experiences of women with other physical disabilities and to those of able-bodied women in South-East Nepal. Methods. This study used a qualitative approach and a cross-sectional, nonrandom survey design. Thirty women underwent in-depth interviews about their marital and sexual relationship by means of a semi-structured interview guide. These thirty women included ten women affected by leprosy, ten women with other physical disabilities, and ten able-bodied women living in South-East Nepal. Results. We found that many women faced violence and abuse in their marriages. However, women affected by leprosy appeared to face more problems with regard to their marital and sexual relationships than women with physical disabilities and able-bodied women. Some of these related to the fear of leprosy. Conclusions. Further research is recommended to investigate the extent of this problem and ways to ameliorate the situation of the affected women. Education and counselling at diagnosis may help prevent many of the problems reported.

Aims To develop recommendations for strategies and interventions to reduce stigma and discrimination related to coronavirus disease 2019 (COVID-19), through reviewing and synthesising evidence in relation to COVID-19 and other disease outbreaks and infectious/stigmatised conditions from systematic reviews and primary studies and recommendations from additional materials. Methods Rapid review, drawing on the World Health Organization's (WHO) methodology for developing interim guidelines during health emergencies. PubMed/MEDLINE, PsycINFO, Cochrane Central and Campbell Collaboration searched up to mid-April 2020. Searches were supplemented by reference-searching and expert recommendations. Searches were designed to identify: (1) systematic reviews (<10 years), or (2) primary intervention studies (no date limit) reporting evidence on anti-stigma interventions (in relation to COVID-19 or other infectious/stigmatised conditions) or (3) additional relevant materials. Data were extracted on population, intervention, outcome and results. These data were compiled into evidence summary tables and narrative overviews. Recommendations on strategies for COVID-19 stigma-reduction were developed using the WHO ‘Evidence to Decision’ framework approach. The review protocol was registered with PROSPERO (registration ID: CRD42020177677). Results The searches identified a total of 4150 potentially relevant records, from which 12 systematic reviews and 29 additional articles were included. Overarching considerations and specific recommendations focus on: (1) language/words used in relation to COVID-19 and affected people; (2) media/journalistic practices; (3) public health interventions; (4) targeted public health interventions for key groups and (5) involving communities and key stakeholders. Conclusions These recommendations represent the first consolidated evidence-based guidance on stigma and discrimination reduction in relation to COVID-19. Mitigating the impact of stigma is critical in reducing distress and negative experiences, and strengthening communities' resolve to work together during exceptional circumstances. Ultimately, reducing stigma helps addressing structural inequalities that drive marginalisation and exacerbate both health risks and the impact of stigma. Administrations and decision makers are urged to consider integrating these recommendations into the ongoing COVID-19 response.

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.

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