Experiences of living with leprosy: A systematic review and qualitative evidence synthesis.

OBJECTIVE: The objective of the review was to identify, appraise, and synthesise qualitative studies on the lived experience of individuals diagnosed with leprosy, the impact of the disease, and how they coped with the disease burden. INTRODUCTION: Leprosy is a chronic disease with long-term biopsychosocial impact and is a leading cause of preventable disabilities. It traps the individuals with leprosy in a vicious circle of disease, stigma, and poverty. The efforts to reduce stigma and discrimination and improve their quality of life have not kept pace with the success of the multidrug treatment. INCLUSION CRITERIA: This review considered published literature on the lived experience of individuals diagnosed with leprosy. There were no limitations on gender, background, or country. All qualitative or mixed-methods studies were accepted. METHODS: The review followed the JBI meta-aggregation approach for qualitative systematic reviews. A structured literature search was undertaken using multiple electronic databases: PubMed, Embase, Web of Science, and CINAHL. RESULTS: The search identified 723 publications, and there were 446 articles after deduplication. Forty-nine studies met the inclusion criteria. The final 173 findings were synthesised into ten categories and aggregated into four synthesised findings: biophysical impact, social impact, economic impact, and mental and emotional impact. These synthesised findings were consistent across the included studies from a patient's perspective. The way people coped with leprosy depended on their interpretation of the disease and its treatment. It affected their help-seeking behaviour and their adherence to treatment and self-care. The review has identified a multi-domain effect on the affected individuals, which goes beyond the biological and physical effects, looking at the social issues, specific difficulties, emotions, and economic hardships. CONCLUSIONS: The researchers, health professionals, and policymakers could use the synthesised findings to address the concerns and needs of the leprosy-affected individuals and offer appropriate support to manage their lives. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO Registration number: CRD42021243223.

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries.

BACKGROUND: Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. CONCLUSION: Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia.

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.

Assessing the prospect of a common health-related stigma reduction response: Cross-perspectives of people living with stigmatised health conditions in Indonesia.

ABSTRACTThis study explored the possibility of a common health-related stigma reduction intervention among people living with HIV, leprosy, schizophrenia and diabetes in Indonesia by assessing their perspectives towards others with the same (within group) and different health conditions (across groups), and willingness to participate in such a program. This mixed-methods study was conducted in West Java, Indonesia between March and June 2018. Eighty participants completed a survey with social distance scale (SDS), while 12 focus group discussion were conducted. Participants with HIV, leprosy and diabetes reported lower within-group SDS scores (4.14 ± 3.65; 4.25 ± 3.95; 7.23 ± 5.31, respectively) while those with schizophrenia reported the highest within-group SDS score (7.76 ± 4.63). Participants with diabetes reported a twofold higher across-group SDS score towards people with the other three health conditions (p < 0.05). The qualitative findings showed that the perception of participants towards one another was shaped by knowledge, understanding and relatedness to the experience of living with health-related stigma. Overall, participants supported the idea of a common stigma reduction intervention for different health conditions, but recommended step-wise implementation of such interventions. Accordingly, this study recommends piloting a common stigma reduction intervention with special focus on fostering understanding, awareness and empathy between people living with different health conditions.

Intersectionality and health-related stigma: insights from experiences of people living with stigmatized health conditions in Indonesia.

BACKGROUND: Health-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia. METHODS: This qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach. RESULTS: The main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence. CONCLUSION: This study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.

Non-Communicable Diseases-Related Stigma: A Mixed-Methods Systematic Review.

This systematic review examines and consolidates existing evidence on stigma associated with the top four non-communicable diseases (NCDs)-cancers, cardiovascular diseases, chronic respiratory diseases, and diabetes-and its impact on the lives of people affected. We conducted a systematic literature search in PubMed, PsycINFO, JSTOR, Science Direct, and Web of Science for original research in English that explored health-related stigma among people living with either of the four NCDs. A three-step integrative synthesis of data was conducted. Twenty-six articles (qualitative = 15; quantitative = 11) were selected, with most (n = 15) related to cancers, followed by diabetes (n = 7), chronic respiratory diseases (n = 3), and cardiovascular diseases (n = 1). Blame, shame, and fear were the main causes of stigma, the origin and nature of which differed according to the disease-specific features. The manifestations (enacted and felt stigma) and consequences (social, behavioral, psychological, and medical) of stigma across NCDs were similar. Inconsistencies existed in the conceptualization of stigma processes. To fill this gap, we developed an NCD-related stigma framework. People living with NCDs can experience stigma, which can negatively impact their health, management of their disease, and quality of life. The new framework can help in improving the understanding of the processes and experiences of stigma related to NCDs.

Decision-making preferences and risk factors regarding early adolescent pregnancy in Ghana: stakeholders' and adolescents' perspectives from a vignette-based qualitative study.

BACKGROUND: Worldwide, over half of the adolescent pregnancies recorded are unintended. The decision to continue the pregnancy to term or to opt for an abortion is a constant dilemma that is directly or indirectly influenced by stakeholders and also by the wider social environment. This study aimed at understanding the perceived decision-making preferences and determinants of early adolescent pregnancy in the Jamestown area of Accra in Ghana. METHODS: A vignette-based qualitative study design was used. Eight focus group discussions were carried among various purposively selected groups of participants: parents, teachers, adolescent students who had not been pregnant before, and adolescents who had had at least one pregnancy in the past. The vignette was a hypothetical case of a 15-year-old high school student who had not experienced her menses for the past 6 weeks. The data were analyzed using a thematic analysis approach. RESULTS: Lack of parent-daughter communication, the taboo on discussing sex-related issues in households and weak financial autonomy were considered to be the main contributing factors to the high early adolescent pregnancy rates in the community. Partner readiness to assume responsibility for the girl and the baby was a key consideration in either continuing the pregnancy to term or opting for an abortion. The father was overwhelmingly considered to be the one to take the final decision regarding the pregnancy outcome. Irrespective of the fact that the respondents were very religious, opting for an abortion was considered acceptable under special circumstances, especially if the pregnant adolescent was doing well in school. CONCLUSION: Inadequate and inappropriate communication practices around sexuality issues, as well as weak financial autonomy are the major predictors of early adolescent pregnancy in this community. The father is perceived to be the main decision maker regarding a young adolescent's pregnancy outcome. Policy-makers should carefully evaluate the implications of this overwhelming perceived desire for the father to be the final decision-maker regarding adolescent pregnancy outcomes in this community.

Attitudes towards abortion and decision-making capacity of pregnant adolescents: perspectives of medicine, midwifery and law students in Accra, Ghana.

Objectives: Because medical, midwifery and law students in Ghana constitute the next generation of health care and legal practitioners, this study aimed to evaluate their attitudes towards abortion and their perceptions of the decision-making capacity of pregnant adolescents.Methods: We conducted a cross-sectional survey among 340 medical, midwifery and law students. A pretested and validated questionnaire was used to collect relevant data on respondents' sociodemographic characteristics, attitudes towards abortion and the perceived capacity and rationality of pregnant adolescents' decisions. The χ2 test of independency and Fischer's exact test were used where appropriate.Results: We retained 331 completed questionnaires for analysis. Respondents' mean age was 21.0 ± 2.9 years and the majority (95.5%) were of the Christian faith. Women made up 77.9% (n = 258) of the sample. Most students (70.1%) were strongly in favour of abortion if it was for health reasons. More than three-quarters (78.0%) of the students strongly disagreed on the use of abortion for the purposes of sex selection. Most respondents (89.0%) were not in favour of legislation to make abortion available on request for pregnant adolescents, with medical students expressing a more negative attitude compared with law and midwifery students (p < 0.001). Over half of the midwifery students (52.6%) believed that adolescents should have full decision-making capacity regarding their pregnancy outcome, compared with law and medical students (p < 0.001).Conclusion: Tensions between adolescent reproductive autonomy, the accepted culture of third party involvement (parents and partners), and the current abortion law may require keen reflection if an improvement in access to safe abortion services is envisioned.

Prevalence and Determinants of Unintended Pregnancy in Sub -Saharan Africa: A Systematic Review.

Over forty percent of pregnancies worldwide are unintended, with a quarter of these from Africa. There is a growing body of evidence regarding the adverse health, economic, societal, and developmental consequences of unintended pregnancies. The main aim of this systematic review is to report on the current prevalence and determinants of unintended pregnancies in sub-Saharan Africa. A literature search (in PubMed, Embase, PsycINFO and Scopus) was performed up to 29 May 2019. The Joanna Briggs Institute Reviewers' Manual guidelines to assess the quality of peer-reviewed quantitative articles were used to select articles that met our inclusion criteria. A total of 29 articles from 9 countries were included in the final review. The mean unintended pregnancy rate was 33.9%. The mean unwanted pregnancy rate was 11.2%, while the mean mistimed pregnancy rate was 22.1%. Mistimed pregnancies were more frequent across the 13 studies that classified unintended pregnancies into the unwanted and mistimed pregnancy sub-groups. Being an adolescent (19 years old or less), single, and having 5 children or more were consistent risk factors for unintended pregnancy. Awareness and use of modern contraception, level of education, socio-economic status, religion, and area of residence as independent variables were either protective or associated with an increased risk of reporting a pregnancy as being unintended. The unintended pregnancy rate in sub-Saharan Africa remains high, especially among singles, adolescents, and women with 5 or more children. There was no uniform tool used across studies to capture pregnancy intention. The studies did not capture pregnancy intention among women whose pregnancies ended up as stillbirths or abortions. More research is required to ascertain when it is best to capture pregnancy intention, and how exclusion or inclusion of pregnancies ending up as stillbirths or abortions impact reported unintended pregnancy rates.

Correction: To keep or not to keep? Decision making in adolescent pregnancies in Jamestown, Ghana.

[This corrects the article DOI: 10.1371/journal.pone.0221789.].

To keep or not to keep? Decision making in adolescent pregnancies in Jamestown, Ghana.

BACKGROUND: Jamestown, an urban coastal slum in Accra, Ghana, has one of the highest adolescent pregnancy rates in the country. We sought to understand the decision (to keep or terminate) factors and experiences surrounding adolescent pregnancies. METHODS: Thirty semi-structured indepth interviews were carried out among adolescents (aged 13-19 years) who had been pregnant at least once. Half of these were adolescent mothers and the other half had at least one past experience of induced abortion. A pretested and validated questionnaire to assess the awareness and use of contraception in adolescent participants was also administered. To aid social contextualization, semi-structured in depth interviews were carried out among 23 purposively selected stakeholders. RESULTS: The main role players in decision making included family, friends, school teachers and the partner, with pregnant adolescents playing the most prominent role. Adolescents showed a high degree of certainty in deciding to either abort or carry pregnancies to term. Interestingly, religious considerations were rarely taken into account. Although almost all adolescents (96.1%) were aware of contraception, none was using any prior to getting pregnant. Of the 15 adolescents who had had abortion experiences, 13 (87.0%) were carried out under unsafe circumstances. The main barriers to accessing safe abortion services included poor awareness of the fairly liberal nature of the Ghanaian abortion law, stigma, high cost and non-harmonization of safe abortion service fees, negative abortion experiences (death and bleeding), and distrust in the health care providers. Adolescents who chose to continue their pregnancies to term were motivated by personal and sociocultural factors. CONCLUSION: Decision-making in adolescent pregnancies is influenced by multiple external factors, many of which are modifiable. Despite legal access to services, options for the safe termination of pregnancy or its prevention are not predominantly taken, resulting in a high number of negative experiences and outcomes. Including safe abortion care within the sexual and reproductive health package, could diminish barriers to safe abortion services. Given the vulnerability of the Jamestown setting, a comprehensive sexual education package that addresses the main decision factors is recommended. Interventions aiming to reduce adolescent pregnancy rates should also recognize that adolescent pregnancies are culturally acceptable in some settings, and under certain circumstances, are desired by the adolescents themselves.

Impact of socio-economic development, contact and peer counselling on stigma against persons affected by leprosy in Cirebon, Indonesia ­a randomised controlled trial.

Objectives: People affected by leprosy are often stigmatised, but stigma is rarely quantified and the effectiveness of interventions is often not evaluated. The SARI Project aimed to test and evaluate three interventions: counselling (involving peer counsellors), socio-economic development (SED) and contact between community members and affected people. Results: This study used a controlled trial design in which pairs of the stigma-reduction interventions were randomly allocated to sub-districts in Cirebon District,Indonesia. The study sample consisted of one cohort of people affected by leprosy (on treatment or treated) and two independent samples of community members. The latter were selected through purposive sampling. Three scales (e.g. SARI Stigma Scale, Participation scale) were applied among leprosy-affected people and two scales (e.g. Social Distance Scale) were used among community members pre- and post-intervention. Among affected people (n=237), significant differences in reduction of stigma and participation restrictions were found in all intervention areas and an improvement in quality of life in some intervention areas. Social distance and social stigma significantly reduced among community members (n=213 and 375) in the two intervention areas where the contact intervention was implemented. Two of the five instruments indicated changes in the control area, but the changes in the intervention areas were much larger. Conclusion: The SARI Project has demonstrated that a measurable reduction in leprosy-related stigma can be achieved, both at community level and among people affected by leprosy, using reproducible interventions that can be adapted to different settings and target groups.

A Cluster-Randomized Controlled Intervention Study to Assess the Effect of a Contact Intervention in Reducing Leprosy-Related Stigma in Indonesia.

BACKGROUND: Can deliberate interaction between the public and persons affected by leprosy reduce stigmatization? The study described in this paper hypothesises that it can and assesses the effectiveness of a 'contact intervention'. METHODS/PRINCIPAL FINDINGS: This cluster-randomized controlled intervention study is part of the Stigma Assessment and Reduction of Impact (SARI) project conducted in Cirebon District, Indonesia. Testimonies, participatory videos and comics given or made by people affected by leprosy were used as methods to facilitate a dialogue during so-called 'contact events'. A mix of seven quantitative and qualitative methods, including two scales to assess aspects of stigma named the SDS and EMIC-CSS, were used to establish a baseline regarding stigma and knowledge of leprosy, monitor the implementation and assess the impact of the contact events. The study sample were community members selected using different sampling methods. The baseline shows a lack of knowledge about leprosy, a high level of stigma and contrasting examples of support. In total, 91 contact events were organised in 62 villages, directly reaching 4,443 community members (mean 49 per event). The interview data showed that knowledge about leprosy increased and that negative attitudes reduced. The adjusted mean total score of the EMIC-CSS reduced by 4.95 points among respondents who had attended a contact event (n = 58; p < 0.001, effect size = 0.75) compared to the score at baseline (n = 213); for the SDS this was 3.56 (p < 0.001, effect size = 0.81). About 75% of those attending a contact event said they shared the information with others (median 10 persons). CONCLUSIONS/SIGNIFICANCE: The contact intervention was effective in increasing knowledge and improving public attitudes regarding leprosy. It is relatively easy to replicate elsewhere and does not require expensive technology. More research is needed to improve scalability. The effectiveness of a contact intervention to reduce stigma against other neglected tropical diseases and conditions should be evaluated.

Lay and peer counsellors to reduce leprosy-related stigma--lessons learnt in Cirebon, Indonesia.

OBJECTIVE: Counselling has been identified as a promising strategy to reduce stigma. Lay and peer counsellors have provided counselling in various fields, but this has not yet been studied in the field of leprosy. The Stigma Assessment and Reduction of Impact (SARI) project in Cirebon District, Indonesia took up this endeavour. This paper describes the initial experiences based on the perspectives of the lay and peer counsellors and aims to provide lessons learnt for future initiatives. METHODS: The selection of lay and peer counsellors was based upon pre-defined criteria such as completed junior high school and level of confidence. This study draws on the notes of seven monitoring and evaluation meetings and 21 group discussions the main researcher facilitated with the lay and peer counsellors and the notes written by the lay and peer counsellors on the sessions with their clients. RESULTS: In total, 198 people affected by leprosy were offered counselling by the 11 lay and 12 peer counsellors; 145 accepted this offer. The other 53 either did not need counselling or did not want to participate for example due to worries about disclosure. Effective communication skills such as listening and asking effective questions were important, but also difficult to acquire for the lay and peer counsellors. Sharing personal experiences was highly appreciated by clients and stimulated a deepened reflection. CONCLUSION: Challenges related to concealment and effective skills exist, but some people affected by leprosy and others can become effective counsellors making it at the outset a challenging but nevertheless promising intervention.

Dealing with stigma: experiences of persons affected by disabilities and leprosy.

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.

Farm-based interventions for people with mental disorders: a systematic review of literature.

PURPOSE: Farms are increasingly used in mental healthcare. This study aimed to systematically review the evidence on the effectiveness of farm-based interventions for patients with mental disorders. METHODS: Controlled and uncontrolled studies of farm-based interventions were included. Within- and between group effect sizes were calculated. Qualitative data were summarized using thematic synthesis. The review followed the PRISMA, Cochrane and COREQ standards. RESULTS: The eleven articles included reported results of five studies, three of which were randomized control trials (RCTs). Overall, 223 patients with depressive disorders, schizophrenia or heterogeneous mental disorders attended three types of farms-based interventions. Favourable effects on clinical status variables were found in one study in patients with depressive disorders that did not respond to medication and/or psychotherapy, and in one RCT in patients with schizophrenia. Assessment of rehabilitative effects (functioning and quality of life) was limited and yielded conflicting results. Patients' experiences revealed that social and occupational components of interventions were perceived as beneficial, and provided insights into how farm-based interventions may facilitate recovery. CONCLUSIONS: Our results suggest that the farm environment should be considered, especially for patients with mental disorders who do not achieve an adequate response with other treatment options. Further research is needed to clarify potential social and occupational benefits.

Outsourcing mental health care services? The practice and potential of community-based farms in psychiatric rehabilitation.

Psychiatric rehabilitation supports individuals with mental disorders to acquire the skills needed for independent lives in communities. This article assesses the potential of outsourcing psychiatric rehabilitation by analysing care farm services in the Netherlands. Service characteristics were analysed across 214 care farms retrieved from a national database. Qualitative insights were provided by five case descriptions, selected from 34 interviews. Institutional care farms were significantly larger and older than private care farms (comprising 88.8% of all care farms). Private, independent care farms provide real-life work conditions to users who are relatively less impaired. Private, contracted care farms tailor the work activities to their capacities and employ professional supervisors. Institutional care farms accommodate for the most vulnerable users. We conclude that collaborations with independent, contracted and institutional care farms would provide mental health care organizations with a diversity in services, enhanced community integration and a better match with users' rehabilitation needs.

The cultural validation of two scales to assess social stigma in leprosy.

BACKGROUND: Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia. METHODOLOGY/PRINCIPLE FINDINGS: Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r=0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found. CONCLUSIONS/SIGNIFICANCE: According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.

Mental health recovery on care farms and day centres: a qualitative comparative study of users' perspectives.

PURPOSE: Mental health services increasingly incorporate the vision of recovery. This qualitative study analysed and compared experiences of recovery on prevocational services, in order to assess if users make progress towards recovery, relative to a staged recovery model. METHOD: Data were collected through semi-structured interviews with participants on care farms (n = 14), work (n = 7) and creative projects (n = 5). RESULTS: The transition from past to current lives was described as a progressive, non-linear process, with different stages guided by different goals. Participants on creative projects lacked clear goals, presented less interest in peers and high need for emotional support. Participants on work projects aimed for occupational rehabilitation, but struggled with the patient culture of the peer community. Participants on care farms aimed for daytime occupations and closer contact with society. They experienced care farms as open, real-life work settings where they could exercise responsibility and connect with people. CONCLUSIONS: Participants progressed towards recovery, as care farms, work- and creative projects empowered them to leave behind inactive, isolated or disorganized living. In day centres, users focused on self-reflection and personal development (creative projects) or on occupational performance (work projects), whereas on care farms, users fulfilled worker roles in a real-life, open community environment. IMPLICATIONS FOR REHABILITATION: Organized as open communities in real-life settings, care farms facilitate the reflection on personal and social responsibility, and therefore have the potential to help users internalize worker identities and improve their motivation to progress towards recovery. Supervisors on care farms are regarded by users as close contacts within the social networks they develop on the service, a position that allows supervisors to actively engage and promote users' progress towards recovery. Elements of the farm environment (such as the "normal life", presence of family members and visitors, and nature) can serve as anchors for supporting the progress towards recovery.

The meaning of leprosy and everyday experiences: an exploration in cirebon, indonesia.

It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in people's experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be "cured."