This study included four groups of participants: 1) persons affected by leprosy; 2) their close contacts; 3) community members; and 4) healthcare workers (HCWs) from community health centers. Engaging these groups was essential to obtain a comprehensive understanding of the social dimensions of leprosy. Persons affected provided firsthand insights of lived experiences, including stigma, its impacts and barriers to care. Close contacts offered perspectives on transmission dynamics, as well as the stigma and fears associated with proximity to affected individuals. Community members contributed broader insights into societal attitudes, misconceptions, stigma, and discrimination. HCWs, who play a central role in diagnosis, treatment, health education, and stigma reduction, provided perspectives that highlight both strengths and gaps in leprosy control and care within the healthcare system.

Drawing on previous knowledge, attitudes, and practices (KAP) studies, we aimed to recruit a random sample of at least 400 participants [15]. We worked with two primary healthcare clinics, one clinic from each sub-district, to identify individuals who had been diagnosed with leprosy. Both clinics generated a list of 100 individuals who had been diagnosed with leprosy in previous five years; 40 people were then randomly selected from each list. In case selected individuals were not available or did not provide consent, we selected the next person on the list. Close contacts, community members and HCWs were recruited through convenience sampling, based on their availability and willingness during the study period.

For the SSIs and FGDs, we aimed for a total of 20–25 participants. We aimed for a balanced representation in terms of age, sex, residence, and survey scores. We purposively selected and invited 4–5 survey participants from each of four participant groups who provided more elaborative information during the survey to participate in the SSIs or FGDs. We also identified relevant key informants who were not part of the survey to participate, i.e., religious leaders and persons affected by leprosy who actively engaged in a local leprosy organization. Participants invited for the SSIs were not the same as those for the FGDs.

Socio-demographic data were collected from all participants. The previously developed and locally translated and validated ‘NLR Perception Study Toolkit’ was used to collect data in REDCap among the four participant groups [11,15]. The Toolkit included a KAP questionnaire, the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS). The KAP questionnaire consisted of eight questions addressing the participants’ knowledge towards leprosy, including questions on the cause, transmission and treatment of leprosy. Interviewers were trained not to lead participants to respond in a certain way and provide suggestive answers. The maximum KAP score that could be achieved was nine points, ranging from zero (poor knowledge) to 9 (high knowledge). Correct answers to a question were counted as one point in the absence of an incorrect answer. An additional seven questions were posed to individuals affected by leprosy, focusing on their personal experiences having leprosy and the manner in which they were treated by the community.

The EMIC-CSS and SDS questionnaires were aimed to assess perception and stigma towards the people affected by leprosy, and were therefore only administered to close contacts, community members, and HCWs. The EMIC-CSS measured perceived attitudes and behavior towards persons affected by leprosy. The scale consisted of 15 questions related to areas of life that may be affected by stigma, such as concealment, avoidance, pity, shame, respect and marriage (prospects). The total score ranged from zero (no negative attitudes) to 30 (high negative attitudes). The SDS was designed to measure the social distance a participant would want to maintain towards a person affected by leprosy as a proxy for their attitudes. The interviewer first read a gender-specific vignette, a brief description describing the life of a person with leprosy, adapted to the local contexts. Following the vignette, participants answered seven questions about the individual described. The total score ranged from zero (indicating no negative attitudes) to 21 (most negative attitudes) [11,15].

We conducted a preliminary analysis of the survey data before the SSIs and FGDs to refine and guide the selection of priority topics for deeper exploration. The SSIs and FGDs were conducted by two trained local interviewers focusing on the following areas: 1) knowledge and perceptions about leprosy; 2) openness and stigma towards persons affected by leprosy; 3) access to healthcare; 4) local beliefs regarding leprosy; and 5) perspectives on research and the MetLep trial.

A (de)briefing was conducted between RL and the local interviewers before and after each SSI and FGD. The SSIs and FGDs were conducted in Indonesian, audio-recorded with participants’ permission, verbatim transcribed, and translated into English. Interviewers also prepared field notes during each session to capture non-verbal cues, such as facial expressions and body language. The SSIs ranged from 20 to 90 minutes, and the FGDs between 110 and 170 minutes. Pseudonyms were used for each interviewee to safeguard confidentiality and preserve a more personal narrative.

Socio-demographic data were analyzed using descriptive analyses. The mean scores of all three scales were calculated per participant group. We performed chi-squared tests to assess the association between each independent variable and the participant groups, and Kruskal-Wallis chi-squared tests to determine whether the distribution of KAP, EMIC-CSS, and SDS scores were the same across all participant groups. For some questions in the KAP survey, multiple answers were permitted; the percentage of participants providing only the correct answer(s) in the absence of any incorrect response, was also calculated.

We developed a model to explain the linear relationship between the dependent and independent variables and used a Bayesian approach to estimate the parameters. In this analysis, the dependent variables included the KAP, EMIC-CCS, and SDS scores, while the independent variables, which were categorical data, included age, sex, marital status, education, occupation, monthly household income, area of residence, relationship with a person affected by leprosy, and participant group. The detailed description of the model and the categories of each independent variable can be accessed in the supporting document (S1 Text and Table A in S1 Text).

A univariate analysis was performed in which each independent variable was included one by one in the model for each dependent variable to estimate the intercept and slope parameters. Independent variables that significantly differed in their impact on the dependent variable were then included in a multivariate analysis. A backward stepwise regression was employed to refine the model. Four models for each dependent variable were made: i) the whole dataset involving all participant groups, ii) persons affected by leprosy, iii) close contacts combined with community members and iv) data from HCWs only. Drawing from previous studies, distinct models were developed for leprosy-affected individuals, because of their lived experiences and higher likelihood of knowing more about leprosy, and for HCWs, of whom majority was enrolled in tertiary education, which may have equipped them with specialized knowledge on leprosy [11]. The analyses were performed in R version 4.3.3 and RStudio version 2024.04.0.

For the qualitative analysis thematic content analysis was performed, which consisted of five steps: 1) data familiarization by (re-)reading the transcripts; 2) identification of initial themes and a thematic framework; 3) open inductive coding of the data; 4) charting, which involved rearranging the coded data based on the thematic framework; and 5) data mapping and interpretation [16]. To ensure consistency and reliability, four researchers (RL, IAS, JIVN and MLG) read the transcripts and held debrief sessions to discuss the data and generate the themes. NVivo 12 was used for the qualitative data analysis.

The mean knowledge score (range 0–9) for all participants was 3.0 (standard deviation [SD] 2.0). HCWs had the highest scores (5.0, SD 1.7), followed by persons affected (3.4, 1.7), and close contacts (2.8, 1.7). Community members had the lowest knowledge scores (2.3, 1.9; p < 001). HCWs involved in leprosy care scored higher (5.5, 1.2) than those not involved in leprosy care (4.8, 1.9; p = 0.1). Only 21 of 402 participants (5.2%) scored >6 points of which the majority were HCWs (Table 1).

Multivariate analysis showed that no formal education, completing primary or secondary education, having an irregular income or a lower income (<95 USD/month) were associated with lower levels of leprosy knowledge. For close contacts and community members, not having a relationship with a person affected by leprosy was linked to less knowledge on the condition (Table 2).

In Indonesia, leprosy is commonly referred to as “kusta”, a term derived from the Sanskrit word kuṣṭha, which broadly denotes a skin disease. Among the Bugis-Makassar, the predominant ethnic community living in South Sulawesi, kusta is also known as “kandala”, which has a negative socio-cultural meaning. While participants had poor overall scores on the KAP survey, almost every interviewed participant knew about leprosy, or as termed in this context, kandala. Kandala was usually linked to the disabilities associated with leprosy.

The term was also commonly used as a symbol of truthfulness, with the implication that individuals who were dishonest may develop leprosy-related disabilities. These disabilities associated with kandala subsequently became emblematic of punishment. For example, if an individual faced allegation of misconduct, they could assert their innocence by invoking the potential repercussions of kandala.

Further, some people used kandala as a profanity, reinforcing the negative connotations linked to the term, and consequently the condition it represents.

Interestingly, not all people were familiar with the meaning of kandala, as mentioned by one of our participants, who was living in South Sulawesi but not part of the Bugis-Makassar community.

Some participants affected by leprosy distinguish between different forms of leprosy: “dry” denotes tuberculoid or paucibacillary leprosy, characterized by fewer skin lesions, low bacterial count and is therefore considered less contagious; and “wet” for lepromatous or multibacillary leprosy, presenting as a more severe, widespread form of disease with a higher bacterial load and greater infectivity.

Another participant whose late husband used to live in Jongaya (leprosy settlement) used a different explanation, which was leprosy of the skin for paucibacillary and leprosy of the bones for multibacillary leprosy.

In the KAP survey, 8% (32/402) of participants provided a correct response about the cause of leprosy and only 2.5% (10/402) on its transmission routes (Table 3). Participants had different perspectives and beliefs about whether leprosy is hereditary, an infectious disease, or both, potentially shaped by observations within their families or community or their own experiences.

Cultural and religious beliefs were also tied to the perceptions of leprosy, including the etiology and transmission. For example, 88 participants (21.9%) believed that leprosy was a punishment and caused by witchcraft or a sin, of whom 21 were HCWs (23.9%, Table 3). Persons affected by leprosy frequently consulted an ustadz, a religious figure well-versed in Islamic teachings, for guidance. According to Islamic beliefs, as cited by ustadz, leprosy may be the result of witchcraft. In this context, it is a supernatural power to harm other people, such as misfortune, illness, or even death.

Another person affected mentioned that an ustadz refused the concept of kandala, i.e., as a consequence if the person was being dishonest or lying. Instead, they argued that leprosy was caused by sinful behaviors, such as engaging in sexual activity during menstruation.

Further, leprosy was also explained as the result of one’s parent’s sins, for example committing acts of religious blasphemy, all linking back to the idea that kandala, and its consequences, was a punishment of sorts.

In addition to religious interpretations, perceptions were also linked with the belief that leprosy could be transmitted through sexual contact. This assumption may stem from the extended incubation period, which makes it challenging for individuals to trace the infection back to a specific exposure.

Or that transmission is related to hygiene, for example, spread through contact with animal feces.

In summary, people drew on cultural models that viewed leprosy as a result of religious taboos, sinful behavior, and/or moral failure, while also drawing on contagion models (i.e., infection from contact with an infected person or animal waste) and biological or hereditary models (i.e., infection is from parents at birth).

Participants showed limited knowledge about the early symptoms of leprosy: only 21 participants (5.2%) provided the correct responses with the lowest responses among community members, followed by close contacts. Apart from HCWs, loss of sensation was a less known symptom than skin lesions.

Half of the of the community members (75/150) responded that they did not know the early symptoms of leprosy; 45/150 (30%) mentioned other symptoms like disabilities and wounds (Table 3). The community members associated leprosy with disabilities, reflected in the following quote:

When asked about their initial responses to the leprosy diagnosis, persons affected expressed feelings of shame, depression, fear of disability, and concerns about transmission, especially for their family members.

A close contact shared that she felt pity for her son, who, after being diagnosed with leprosy, began isolating himself in his bedroom, especially when guests visited or when his friends came looking for him. Leprosy restricts those affected from socializing with neighbors and friends.

While most participants correctly answered that leprosy is curable (309, 76.9%) and could be treated with medicine (244, 60.7%) (Table 3), leprosy treatment had multiple, often conflicting, meanings for people affected. The meanings were physiological (i.e., cure, prevent symptoms/disability, prevent transmission) coupled with social consequences. First, the meaning of treatment adherence and completion of required duration of treatment indicated biological cure.

Adherence to treatment may alleviate symptoms associated with leprosy and prevent nerve damage and consequent disabilities. For example, a male participant mentioned he was afraid to become disabled in the absence of treatment, which might result in loss of his social network.

As pain due to nerve damage was a common symptom for persons affected with leprosy, the absence of pain was noted as cure. Even though this participant completed a year of treatment, he felt he was still not cured because he continued to experience pain.

Similarly, another meaning of cure was related to visual symptoms; when symptoms went away with medication (e.g., skin patches) they were cured.

While these definitions of cure are quite positive (i.e., lack of pain, lack of symptoms), accessing treatment potentially carried negative connotations in communities. The HCWs mentioned in interviews that the persons affected often felt ashamed if they were seen by other people visiting the leprosy clinics, especially those with disabilities or experiencing skin changes due to treatment, or when HCWs came to visit their homes for treatment.

Additionally, the treatment itself could also lead to adverse effects, such as skin discoloration, which is caused by clofazimine, one of the antibiotic drugs of multibacillary MDT. A female participant who was affected by paucibacillary leprosy explained how she did not experience skin discoloration from the treatment, which motivated her to continue treatment. However, this side effect is widely recognized and may discourage individuals from adhering to the treatment regimen.

Finally, treatment could reduce potential transmission. A female participant feared she would transmit leprosy to her child if she was not treated.

In addition to biomedical treatment, participants also mentioned seeking advice from the ustadz and traditional healers to address their leprosy symptoms. Some recommended baths or drinks with a mixture of turmeric and jujube leaves (Ziziphus jujuba) – a traditional medicine and herbal remedy that is believed to have various health benefits, including anti-inflammatory and antioxidant properties.

The people affected were also encouraged to engage in rituals and prayers of repentance in an effort to clean themselves of the condition, as leprosy in this context was often associated with impurity, sin, and witchcraft, often blaming the person affected.

Data from the survey showed similar findings: 44 community members (29.3%) and 13 HCWs (25.5%) expressed the belief that leprosy could be treated through these alternative methods (Table 3).

Qualitatively, it was even more complex to unravel. In SSIs, we discussed aspects of stigma surrounding the everyday lives of persons affected in their homes, in their wider communities and within the healthcare system. Experiences of stigma infiltrated health system experiences and extended to HCWs working in the leprosy clinics as well (see also next section).

The decision to disclose one’s leprosy status was influenced by fear of facing stigma or abandonment. Survey findings indicated that 45/75 individuals affected by leprosy (60.0%) chose not to disclose their condition to others, often because of concerns about potential community rejection. This is exemplified by the fact that 55/126 close contacts (44%) were unaware of their relationship with someone who had leprosy. Further, 19/75 people (25.3%) felt the community would have less respect for them because of their illness. In addition, 10/75 participants (13.3%) acknowledged that other people refused to visit their house because of leprosy, even after treatment, and 9/75 (12.0%) stayed away from work or social gatherings. These findings were confirmed during the interviews: persons affected by leprosy concealed their condition for various reasons, including apprehension of stigma or discrimination, feelings of shame, and concerns about livelihood. Even within the clinic, there were instances where HCWs engaged in subtle stigmatizing practices, like whispering results to individuals diagnosed with leprosy, perpetuating secrecy and discouraging disclosure.

Historically, leprosy is associated with quarantine and isolation in leprosy settlements. The perception was that persons affected should avoid social interactions and stay at home. This was experienced by leprosy-affected participants:

But this was also the perception of families with members who had leprosy.

Beyond the isolation, another perception experienced by those affected with leprosy is that they are shunned.

This led some persons affected to hide the symptoms of leprosy or leprosy treatment, like visible skin changes, i.e., hyperpigmentation resulting from treatment. They would refer to these changes as an allergic reaction, cover their face with a mask or hijab (for women), or cover their skin by wearing long sleeves.

Persons affected by leprosy expressed during the interviews that they faced stigma and discrimination in their daily lives. From their perspective, community members sometimes avoid physical contact (e.g., handshakes, touching objects handled by persons affected) and/or maintained a physical distance. This could make people feel shunned.

But it was not just from the community, the social exclusion was integrated into the family as well, again reaffirming the need to avoid disclosure.

As a result, affected individuals were often excluded from social activities. The lack of knowledge regarding leprosy and its transmission among the community contributed to social exclusion.

In addition, social exclusion was manifested as difficulties in securing employment and/or rejection to participate in community activities. For example, participants relayed how hotel staff prohibited people affected by leprosy to organize a gathering at a hotel.

In 2000, Indonesia formally reached the WHO elimination status, after which the leprosy control program underwent significant downscaling on the health system front. This led to loss of clinical expertise, resources and political commitment dedicated to leprosy control efforts [17].

Participants spoke about how, at times, HCWs in charge of the leprosy program were not available at the clinics when persons affected by leprosy, or their families, travelled to the clinic to pick up their drugs. As a result, participants experienced feelings of insecurity when considering visiting the clinic. They were hesitant to be seen at the leprosy clinic and were concerned about disclosing their leprosy status to HCWs who were not affiliated with the leprosy program.

In interviews, the leprosy program HCWs reported that they received substantial lower annual funding compared to priority programs such as tuberculosis or childhood stunting. The implications of limited budget allocation were substantial, as efforts toward leprosy elimination—such as contact tracing and community examinations—were no longer conducted optimally.

HCWs involved in leprosy care received only basic training with limited opportunities for refresher courses. Those who were not directly engaged in leprosy care received no training, which impacted the quality of care for patients.

Interviewer: “Have you been exposed to any leprosy training since working here (as a nurse in the emergency ward since 1986)?”

Participant: “No, I haven’t.” (SSI, Dg. Hamsina, HCW, female)

The lack of training resulted in insufficient knowledge about leprosy. The interviewed HCWs stated that some HCWs were reluctant to physically examine or treat individuals with leprosy who had wounds.