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.

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.

Health-related stigma causes a negative impact on the lives of affected people and undermines the effectiveness of public health programs. This study aimedto explore experiences and consequences of stigma among people affected by four health conditions relevant in Indonesia– HIV (Human ImmunodeficiencyVirus), leprosy, schizophrenia and diabetes. In this qualitative study 40 people affected by the four health conditions in Jakarta and West Java, Indonesia–,were interviewed between March and June 2018. Data were analyzed thematically by following an integrative inductive-deductive approach. The experiencesand consequences of people with stigma were similar, but such experience were more severe among people affected by HIV, leprosy, and schizophrenia.Those with diabetes either experienced no or less severe stigma. The participants revealed that they experienced enacted stigma in healthcare, employment,and social interactions in the structural and interpersonal levels. They also experience the stigma in the form of internalized and anticipated stigma at an individual level. Incidences of human rights violations were evident. Social, behavioral, psychological, and medical consequences were also reported.

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.

Leprosy reactions (LR) are immune-mediated complications of leprosy that may be associated with severe and irreversible nerve damage. Non-medical aspects, such as financing, service provision, and healthcare resources in the management of LR are generally overlooked as studies tend to concentrate on clinical features and treatment. Barriers to accessing care and services are a major cause of suboptimal care for people with leprosy. This study aims to explore the barriers to and facilitators of high-quality care and management of LR in two leprosy-endemic countries with different health care models – Indonesia and India – and identify areas for improvement. A socio-ecological model was adopted. Data were obtained from 66 interviews with individuals who experienced LR and were seeking care at the two study sites. In addition, immediate family members of individuals with LR and healthcare workers attending to people with leprosy participated in seven focus group discussions (FGDs). This study highlights the significant impact of public health insurance regulations and uptake at the macrosystem level on the provision of healthcare services, clinical decision-making, care expenditure, and the psychological well-being of individuals with LR in Indonesia and India. Lack of specialized health professionals and communication challenges were identified in both study populations. Indonesian participants encounter additional challenges due to a fragmented information system and drug shortages. This study identifies key facilitators in providing high-quality care for LR-affected individuals, including financial assistance, availability of corticosteroid alternatives, timely provision of care, and counselling. It found that the high coverage of public health insurance cards in the Indonesian model has increased access to care among individuals affected by LR, despite the challenges. Conversely, the Indian model of care offers treatment subsidies. The advantage of the Indonesian model is its ability to provide wider access to high-quality care, whereas the Indian model focuses on those in most need. This study emphasizes the importance of addressing these challenges through improved communication strategies, education aimed at the affected individuals, and accessible medical care. Furthermore, variations in care-seeking behaviour and self-care practices were observed in both sites, underscoring the need for culturally sensitive and comprehensive approaches to the management of LR. The study findings demonstrate that the factors identified at the four systemic levels are interrelated and have an impact on the access, acceptability, and management of LR services. Despite its accessibility and wider coverage of public health insurance, the integrated service model in Indonesia faces challenges associated with complex regulations and the availability of medication. India’s care model offers intensive, specialised care but has difficulties in ensuring sufficient health personnel, resources, and public health insurance coverage. These findings highlight the need to address these challenges to ensure timely, effective, and comprehensive care for individuals with LR.

Introduction Leprosy reactions are immunological complications that may occur before, during, or after completion of multi-drug therapy. Erythema nodosum leprosum (ENL), or type-2 reactions, are painful and characterised by fever, skin nodules, and involvement of organs such as joints and eyes. Social transfigurations in health refer to an exploratory lens to describe the profound changes in social identity and status due to illness. Social transfiguration in leprosy is often associated with negative social attitudes, stereotyping, and discrimination, leading to social isolation. Results Examining the lived experiences of an Indonesian man and an Indian woman illustrates the realities of physical transformations due to illness, whereby the embodiment of ENL and concurrent social relationships can reproduce and reinforce an imagined wellness that may be unattainable. The unpredictable occurrence of ENL can delay care-seeking, increase stigma, and disrupt familial and social connections. The embodied, gendered and temporal dimensions of the transfigured body also draw attention to the cultural and social norms that render the body an (in)disposable contributor to the household. Conclusion This paper highlights how ENL is related to bodily life through the lens of sociality and its transfiguration on health and illness. Service providers mindful of affected individuals’ unique experiences could consider the implementation of structural changes in ENL care, such as inpatient support, self-care groups, and integrating social support, which might improve the lived experience of affected individuals.