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Despite the growing interest in public and patient involvement in research, best practices in the leprosy context have yet to be explored. This mixed-method study aimed to explore the interpretation, barriers and opportunities of meaningful engagement of persons affected by leprosy in research through: (i) an exploratory phase consisting of key informant interviews with experts in public and patient involvement (n = 2) and experts-by-experience (i.e., persons affected by leprosy; n = 4), and (ii) an in-depth phase among leprosy researchers consisting of an online survey (n = 21) and key informant interviews (n = 7). Qualitative data were thematically analyzed. Basic descriptive statistics were used to summarize the survey data. Key informant interviewees unanimously agreed to the importance of engagement in research. Survey results indicated that the level of engagement differed across research stages. Identified barriers included a lack of skills for or awareness of engagement among both experts-by-experience and researchers, stigma and limited time and resources. Opportunities included capacity strengthening, creating a shared understanding, building rapport, and establishing a safe environment. In conclusion, this exploratory study emphasized the importance of engagement of experts-by-experience in leprosy research and identified ways forward that include, but are not limited to, the acknowledgement of its value and creating a shared understanding.

Aim This study explored community perceptions about leprosy and the extent, root causes, and drivers of stigma in Kano State, northern Nigeria. Methodology The study used a cross-sectional design with a qualitative approach. Semi-structured in-depth interviews were conducted with community members unaffected by leprosy. Participants were selected using stratified purposive sampling. Thematic analysis was performed based on the “Framework Approach”. Results A total of 21 community members were included in this study. We found that the majority of the participants perceived persons affected by leprosy negatively, they were considered dirty, incurable, and inferior. Participants indicated that they avoid touching, social interactions, and sharing meals with persons affected by leprosy. In addition, leprosy was said to negatively impact employment opportunities and the marriage prospects of persons affected and their family members. Marriage prospects were considered worse for women affected by leprosy. We identified four main drivers of stigmatization: (1) local beliefs and misconceptions about leprosy (e.g. the belief that leprosy is hereditary, incurable, or highly infectious), (2) fear of disability and deformity, (3) fear of infection, and (4) perceived poor personal hygiene of persons affected. Conclusion This study revealed negative perceptions regarding leprosy, including misconceptions about etiology, fear and desire to keep social distance towards persons affected. Our findings underscore the importance of community education and behavior change as key to transforming perceptions and behavior towards persons affected.

Objective To investigate factors that influence the mental wellbeing of persons affected by leprosy in Far-Western Nepal. Methods The study used a cross-sectional design with a qualitative approach. Semi-structured, in-depth interviews and focus group discussions covering topics such as feelings towards and experiences with leprosy, mental wellbeing, knowledge about leprosy, social life, community, culture and future outlook were employed. The data were analysed using Framework Analysis and Thematic Open Analysis. Results A total of 25 persons affected by leprosy were included in the in-depth interviews and 13 persons participated in focus group discussions. We found that participants often experienced stigma and/or mental distress. Participants reported physical weakness or pain, activity limitations, worries about their disease and its implications, feelings of shame, suicidal thoughts, and perceived and/or internalised stigma. Factors influencing mental wellbeing included discrimination, social support, religion, participation (restrictions), (in)ability to work, community attitudes, knowledge of leprosy and cultural beliefs about the disease. Conclusions This study revealed that the majority of participants faced leprosy-related stigma, physical discomfort, restrictions in social participation and mental distress. We recommend the development of interventions such as counselling after diagnosis with leprosy, increasing leprosy awareness and knowledge, addressing negative attitudes and beliefs in the community and stimulating social participation.

Objectives: A negative perception of leprosy and other neglected tropical diseases (NTDs) is a problem that is seen globally. It results in discrimination, social exclusion and widespread mental health problems. There is a need for a standardised toolkit to assess the different aspects of perception of leprosy or other NTDs, including essential knowledge of these conditions. Methods: We developed the Perception Study Toolkit (PST). This toolkit consists of four measures, a Communication Needs Assessment questionnaire, Knowledge Attitudes and Practices questionnaire, the EMIC community stigma scale and the Social Distance Scale. It also comprises qualitative methods to investigate perception: the way people see leprosy, what they know about leprosy and their attitudes, beliefs and reported behaviour towards persons affected by leprosy. The PST is a toolkit and comprises separate instruments that assess different aspects of perception, it is also possible to use only one or a few of the instruments of the PST. Results: This is not applicable because this is not a study. Conclusions: The PST can help identify specific beliefs, knowledge gaps, misconceptions and fears to inform community education and behaviour change interventions and can be used to monitor and evaluate such interventions. Using a standard toolkit like the PST would enable assessment of the perception of leprosy or other NTDs that would allow comparison across projects and countries including monitoring of changes over time.

Background Individuals affected by Hansen's disease (leprosy) often experience stigma and discrimination. Greater psychosocial resilience may enable people to deal with such discrimination. This study aimed to explore sources of strength and resilience for individuals affected by Hansen's disease in Brazil. Methods We used a cross-sectional study design with a qualitative approach. Semistructured focus groups were conducted. Analysis comprised thematic categorisation of transcripts. Results Thirty-one participants were included: 23 individuals affected by Hansen's disease and 8 healthcare providers. We found that while a few individuals affected were provided with formal psychological support in the early phases of their treatment, many noted the importance of providing such support at this time. Most participants described relationships with and social support from family members, friends and with others affected by Hansen's disease as their primary source of resilience. A key context for building resilience was through the peer-level sharing and engagement experienced in self-care and support groups. Participants also emphasised the importance of providing appropriate information about Hansen's disease and the importance of beliefs and spirituality. Conclusions Hansen's disease services should seek to build resilience in early treatment through counselling and during treatment and beyond by having people affected getting together. Across both settings supporting family and social relationships, providing accurate information and acknowledging spiritual beliefs are important.

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., Author summary 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. Persons affected by leprosy, their close contacts, community members and health workers were included. We administered questionnaires (the KAP measure, EMIC-CSS and SDS) to 2344 participants. In addition, 110 participants were interviewed in-depth and 60 participants were included in focus group discussions. Knowledge levels were low. 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. Data from the interviews indicated that people were afraid of being infected by leprosy. Local beliefs and misconceptions differed. 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. 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.

Introduction Since ancient times leprosy has had a negative perception, resulting in stigmatization. To improve the lives of persons affected by leprosy, these negative perceptions need to change. The aim of this study is to evaluate interventions to change perceptions and improve knowledge of leprosy. Methodology/Principal findings We conducted a pre-post intervention study in Fatehpur and Chandauli districts, Uttar Pradesh, India. Based on six steps of quality intervention development (6SQuID) two interventions were designed: (1) posters that provided information about leprosy and challenged misconceptions, and (2) meetings with persons affected by leprosy, community members and influential people in the community. The effect of the interventions was evaluated in a mixed-methods design; in-depth interviews, focus group discussions, and questionnaires containing a knowledge measure (KAP), two perception measures (EMIC-CSS, SDS) and an intervention evaluation tool. 1067 participants were included in Survey 1 and 843 in Survey 2. The interventions were effective in increasing knowledge of all participant groups, and in changing community and personal attitudes of close contacts and community members (changes of 19%, 24% and 13% on the maximum KAP, EMIC-CSS and SDS scores respectively, p, Author summary To improve the lives of persons with leprosy, perceptions about leprosy need to change. The aim of this study is to describe the development and evaluation of interventions (posters and community meetings) to change the perception and improve knowledge of leprosy in Fatehpur and Chandauli districts, India. To measure the effect of the interventions we administered questionnaires before and after the interventions and we conducted 48 interviews and eight group interviews afterwards. In total 1067 participants were included in the first survey and 843 in the second. We found that the interventions resulted in more knowledge of leprosy and in changed community and personal attitudes towards (persons affected by) leprosy. The percentage of participants with adequate knowledge of leprosy was higher in the second survey and the percentage of participants with negative community and personal attitudes was lower. In the interviews, many participants indicated that there had been a change in perception in the community. The more posters participants had seen, the better their knowledge of leprosy and the more positive their attitudes. Findings from this study suggest that contextualized posters and community meetings can be effective in changing the perception of leprosy and increasing leprosy-related knowledge.

Background Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. Methodology We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. Findings Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. Conclusion This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention., Author summary The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. We assessed resilience and quality of life with two questionnaires (the CD-RISC and WHOQOL-BREF) pre-and post-intervention. In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in Odisha state again at six months after completion. Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in resilience scores for persons affected and family members from Odisha state, this improvement was maintained at six-month follow-up. There was no increase in resilience scores post-intervention among participants from Telangana state. Quality of life scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. Participants especially appreciated the social dimensions of the intervention. This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life.

Objective: Promoting psychosocial resilience is a concern of health and wellbeing researchers and practitioners in many fields. Enhanced resilience in settings where people face discrimination may enable them to cope more effectively and deal with exclusionary behaviour and may also enable families to become more inclusive. While there are numerous interventions to build personal and family resilience in areas such as mental health, education and HIV/AIDS, this area of focus has not been well consolidated in leprosy-related research. In response, a review was conducted to identify core elements of interventions to promote resilience in individuals and family members in the face of discrimination. Methods: We conducted a multi-phase adapted scoping review of English literature and a narrative review of the Portuguese language literature. All phases comprised the identification of prominent themes across multiple studies and a final synthesis facilitated the identification of key principles to inform and guide leprosy service interventions. Results: We identified three main intervention focus areas in our review: individual level, social/community level and system level. We found that in the face of discrimination, resilience can be strengthened through information provision, counselling and assisting people through coping skills acquisition. Multi-pronged interventions focusing on increasing knowledge and improving self-esteem appear particularly worthwhile. Conclusions: The current review indicated that interventions should be tailored to the audience and should acknowledge the need for sustainability of interventions and durability of outcomes. We concluded that interventions for resilience would be beneficial in the context of leprosy, and potentially other neglected tropical diseases.

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0–80), the SARI stigma scale (range 0–63) and the Beach Centre Family Quality of Life scale (range 0–125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p, Author summary A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. Family-based support may be a sustainable and feasible strategy to practice self-management. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We collected data on physical impairments, activity limitations, stigma and family quality of life, and conducted in-depth interviews and focus group discussions. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings. A total of 275 persons affected attended at least one session with a family member. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved. In addition, family quality of life significantly improved, and stigma levels significantly decreased after the intervention. Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma.

Background Leprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life. Methods A cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25–125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0–63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0–80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis. Results A total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between the FQOL and SALSA scores. Conclusions Family quality of life is an important area to address because neglected tropical diseases often affect the whole family. It is therefore important in order to provide appropriate support for persons affected and their family members. Efforts to improve the quality of life of families in which a family member is affected by leprosy, podoconiosis or LF should give priority to women and families with a smaller family size.

Summary: We conducted a brief survey using a number of dimensions of the Principles and Guidelines accompanying the Resolution on the elimination of discrimination against persons affected by leprosy and their family members, to increase our understanding of the dimensions of discrimination which impact most closely on people affected by leprosy. Our study included 265 participants from 20 different countries. We found that participants reported higher levels of discrimination on practical and personal issues, and lower levels of discrimination on more abstract issues that didn’t impact them directly. These findings may inform implementation of the Principles and Guidelines, providing justification for prioritising practical and local measures, which are likely to have the most immediate impact on people affected by leprosy.

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.

Background Neglected tropical diseases (NTDs) are a group of often chronic and disabling infectious conditions, closely related to poverty and inequities. While it is estimated that millions of people are affected, accurate and internationally comparable data about NTD-related morbidity and disability are lacking. Therefore we aimed to develop and pilot a toolkit to assess and monitor morbidity and disability across NTDs. Methods A cross-sectional, non-random survey design with a mixed methods approach was used. We conducted a literature review on existing tools to assess and monitor disability, followed by a Delphi study with NTD experts to compile a prototype toolkit. A first-phase validation study was conducted in Northeast Brazil among people with Chagas disease, leishmaniasis, leprosy and schistosomiasis. Results Instruments included were the clinical profile, WHODAS, P-scale, SRQ, WHOQOL-BREF and WHOQOL-DIS. Most questions in the various instruments were readily understood with the exception of the WHOQOL-BREF, where additional explanations and examples were often needed. The respondents were very appreciative of the instruments and found it valuable to have the opportunity to talk about these aspects of their condition. Conclusions Our findings support the acceptability and relevance of five of the six instruments tested and the concept of a cross-NTD toolkit.

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.

Leprosy is still a significant health problem in many countries. In 2017, 79 nations reported 100 or more new cases of leprosy.1 Between 1985 and 2017, a sharp decline was observed in the reported prevalence of leprosy from 5·2 to 0·21 million.1 Multidrug therapy (MDT) has contributed substantially to this decline, with over 15 million people cured from leprosy since its introduction in 1982. MDT is provided free of cost worldwide by Novartis, and the distribution is managed by WHO. However, global new case detection has remained more or less stagnant in the last 10 years. The substantial proportion of child cases among new cases indicates that the transmission of M. leprae is still ongoing in many countries and areas. A major reason is that M. leprae is a slow growing bacterium and leprosy has an average incubation period of about 5 years.2,3 Persons incubating the disease are infectious at some point during that period, which is likely a major reason why treatment of symptomatic cases has had so little impact on the incidence of leprosy. A second reason is that the activities recommended by the WHO’s Global Leprosy Strategy, such as early detection, contact examination and prompt treatment, were often implemented inadequately. [...]