TB Stigma:  Stigma and Stigmatization Experienced by People with Tuberculosis: A Qualitative Study in Indonesia

Introduction

Tuberculosis (TB) is a contagious illness that primarily impacts the respiratory system. However, it can also target other areas of the body. Excessive population density in residential or occupational settings is a significant contributing factor to the spread of tuberculosis, and only individuals who are afflicted with tuberculosis have the potential to transmit the disease (World Health Organization [WHO], 2024a). TB is a significant global health concern that engenders various physical, economic, and social issues (DeSanto et al., 2023). Globally, about 10.6 million individuals contracted TB in 2021 (WHO, 2023). US$22 billion is required annually for TB prevention, diagnosis, treatment, and care to meet global targets by 2027, as agreed at the 2023 UN High-Level TB meeting (WHO, 2025). China, Bangladesh, Nigeria, the Congo, India, Pakistan, Indonesia, and the Philippines together represented more than two-thirds of the total tuberculosis cases worldwide (WHO, 2023). Malnutrition was identified as the cause of 2.2 million new cases of tuberculosis worldwide. Alcohol use disorder was responsible for 740,000 new cases, while smoking was related to 690,000 cases (WHO, 2023). Tuberculosis (TB) can impact individuals of all demographics and geographical locations. However, this disease primarily affects adults, with a higher prevalence among males than women (WHO, 2022). Although TB is a disease that may be prevented and treated, it still causes the deaths of 1.5 million people annually, making it the leading cause of infectious mortality worldwide. TB is the primary cause of death in people with HIV and is a significant contributor to the development of antibiotic resistance worldwide (WHO, 2024a).

In Indonesia, TB poses a significant public health challenge. Managing it is a central goal in the country’s efforts to promote sustainable healthcare. The country reported approximately 150,000 TB cases, equating to one case every four minutes. In 2020, TB caused 93,000 deaths, with a mortality rate of 55 per 100,000 people (Ministry of Health of Indonesia, 2022a). Indonesia is among eight nations that account for two-thirds of global TB cases, according to the WHO Global TB Report 2020. In 2019, an estimated 142,000 children were diagnosed with TB, representing 17% of all TB cases in Indonesia. Effective TB control can enhance population quality and productivity (Ministry of Health of Indonesia, 2023). The 2018 Indonesian Basic Health Research reported a TB prevalence of 0.4%, comparable to the 2013 figure. Provinces with the highest prevalence were Banten (0.8%), Papua (0.8%), West Java (0.6%), and Aceh (0.5%) (Hadawiyah et al., 2022). The Ministry of Health estimated that in 2023, Indonesia had about 969,000 TB cases, resulting in 144,000 TB-related deaths, including 28,000 with drug-resistant TB and 7,921 confirmed RR/MDR TB cases. Of these deaths, 13,977 were due to TB (Ministry of Health of Indonesia, 2023). TB remains one of Indonesia’s top five causes of death, hampering efforts for complete detection, which was only 41% in 2020, nearly halving from previous levels (Ministry of Health of Indonesia, 2022b). Most TB risk factors are linked to poor living conditions, poverty, and socioeconomic inequality (Al-Qarana & Sfenrianto, 2022). In Indonesia, TB is closely associated with poverty and economic hardship, with sufferers often facing stigma and discrimination.

Erving Goffman (1963) described stigma as an attribute that deeply discredits and diminishes an individual, transforming them from a complete, typical person into a tainted, marginalized one (p. 3). Both internal and external stigma hinder TB patients and survivors from exercising their rights to access healthcare (Noya, 2022). In DKI Jakarta, Indonesia, TB remains one of the most prevalent diseases among the population. In 2018, there were 39,470 cases of pulmonary TB in the city, with the highest numbers in East Jakarta (12,334) and South Jakarta (7,859). Other districts reported 7,563 in West Jakarta, 6,428 in Central Jakarta, 5,215 in North Jakarta, and 71 in the Seribu Islands (Badan Pusat Statistik Province DKI Jakarta, 2022). Social stigma is a significant factor contributing to the worsening of pulmonary tuberculosis, as inappropriate behavior can continue to expose others to the disease (Zulaikhah et al., 2019).

The extent of stigmatization depends heavily on cultural and contextual value systems, which vary across regions and societies (Ahmedani, 2011; Subu et al., 2023). TB stigma often marks those affected by the disease, and public health communication about tuberculosis has been inconsistent, sometimes even unintentionally fueling stigma (Meershoek et al., 2018; Subu et al., 2021). Using a conceptual framework on health-related stigma can help unify terminology and provide deeper insights into how stigmatization functions (Stangl et al., 2019). TB remains a highly stigmatized disease (Datiko et al., 2020; Thomas & Stephen, 2021). The stigma is linked to its transmission, limited knowledge about its cause, treatment, or association with marginalized groups like those with low income, racial minorities, sex workers, or HIV/AIDS (Ministry of Health of Indonesia, 2022a). Stigma affects TB treatment programs, particularly by causing patients to abandon treatment, which is the main challenge in managing pulmonary TB (Endria & Yona, 2019). One factor is the social stigma that discourages seeking treatment, as TB symptoms such as coughing and weight loss often attract negative attitudes from social circles (Oladele et al., 2021). This stigma can lead to social isolation, rejection, or exclusion from work, community, family, and even healthcare providers trusted with their care (Pradipta et al., 2021). Much of this stigma stems from false beliefs and misconceptions, like the idea that TB is incurable, hereditary, a curse, or spread through non-respiratory means such as sharing utensils. Some TB stigmas may be based on legitimate public health concerns about transmission (Nyasulu et al., 2016; Chang & Cataldo, 2014). However, stigma can hinder treatment adherence, reducing effectiveness and raising the risk of the disease spreading and becoming drug-resistant (Datiko et al., 2020; Sommerland et al., 2017). Broadly, evidence suggests that TB stigma can contribute to mental health issues (Lee et al., 2017), financial hardship, and income loss (Zimmerman et al., 2022). Given these issues, it is crucial to study TB stigma to understand its prevalence, causes, and determinants, and to assess the success of strategies aimed at reducing it (Sommerland et al., 2017).

Socially, TB can lead to various issues such as poverty, stigma, and discrimination. Research shows that individuals who internalize stigma often have low self-esteem, and fear of adverse community reactions can prevent them from disclosing their status (Hadawiyah et al., 2022). This qualitative study examined the stigma and discrimination faced by people with TB from their own perspectives in two urban Indonesian areas. Understanding what contributes to TB stigma can help improve efforts to identify, treat, and engage people with the disease. These insights are also vital for designing effective TB treatment programs and interventions that address this issue specifically in Indonesia.

Methods

Results

This study employed semi-structured interviews with 30 tuberculosis patients in Jakarta, Indonesia. Of the 30 participants, 21 were female, and nine were male. Our study identified four main themes: 1) internalized stigma or self-stigma, 2) family stigma, 3) public stigma, and 4) the reason for TB stigmatization. Additionally, each of these central themes has several subthemes. Themes and main themes are discussed below:

Discussion

This study aimed to explore the stigma faced by people diagnosed with tuberculosis (TB) in an urban area of Indonesia. TB continues to be a significant global health issue, especially in Indonesia, with high rates of cases and deaths. A total of 856,000 people contracted TB, leading to 84,000 deaths. These figures represent 8% of the worldwide cases and 7% of global TB-related deaths (WHO, 2024b).

Research on TB stigma and its impacts has been documented (Ali, 2019; Subu et al, 2024). TB stigma primarily manifests as social exclusion and avoidance, fueled by fears of transmission, rumors, verbal harassment, diminished marriage prospects, and family neglect (Mukerji & Turan, 2018). In India, TB is often stigmatized because it challenges societal norms that define acceptability. Patients often face enacted and perceived stigma, while their family members encounter perceived and secondary stigma. Healthcare workers can also display secondary stigma (Abbas Ali et al., 2024). Stigmatization arises from beliefs, attitudes, and behaviors targeting individuals or groups perceived as stigmatized (Stangl et al., 2019). The community setting plays a significant role in shaping TB-related stigma. Although well-recognized, it is increasingly studied within public health research (MacIntyre et al., 2017). TB stigma can hinder efforts to seek and stick to treatment (Cremers et al., 2015; Krishnan et al., 2014). Stigma involves devaluing or discrediting individuals because of undesirable traits, often through labeling, marginalization, stereotyping, and social exclusion based on those traits (Chang & Cataldo, 2014; Krishnan et al., 2014).

Our research shows that stigma appears both openly and internally. Self-stigma, or internalized stigma, involves accepting others’ criticism. Similar studies in Africa find that internalized stigma lowers self-esteem, while anticipated stigma prevents people from revealing their status out of fear of negative consequences (Cremers et al., 2015; Murray et al., 2013). People experiencing internalized stigma often have reduced self-esteem (Daftary et al., 2021; Wouters et al., 2020). Our results confirm that stigma is present, predictable, and internalized. Literature documents stigma among TB patients and healthcare workers, whether expected, enacted, or internalized (Foster et al., 2022; MacIntyre et al., 2017). TB patients also experience feelings of inferiority linked to self-stigma, often showing signs like avoiding eye contact or looking down during conversations. This internalized stigma stems from feelings of isolation, disrespect, and insignificance (Ritsher et al., 2003; Saraswati et al., 2016). TB-related stigma is driven by fear of catching the disease and the dual understanding of its nature. People with TB try to avoid social stigma associated with seeking treatment, which hinders access to care. Stigma in TB patients can lead to discrimination, withdrawal, or self-isolation (Fuady et al., 2023). Studies indicate that internalized stigma causes feelings of guilt and lowers self-esteem, leading to poorer treatment adherence (Atre et al., 2011; Cremers et al., 2015). The literature consistently reports internalized stigma among TB patients and healthcare staff across different contexts (MacIntyre et al., 2017; Foster et al., 2022). Some African research shows internalized stigma diminishes self-worth, while anticipated stigma affects willingness to disclose status due to fear of negative reactions (Murray et al., 2013; Cremers et al., 2015). Additionally, individuals with internalized stigma tend to have low self-esteem (Wouters et al., 2020; Daftary et al., 2021).

People affected by TB-related stigma, including their families, have indicated that guidance from TB survivors on effective recovery methods would be helpful. TB survivors serve as living proof that TB and its social stigma can be overcome, which can improve treatment adherence and ensure ongoing medical support (DeSanto et al., 2023). Stigma involves perceptions of others’ judgments, fear of disclosure, internalized shame and self-rejection, self-stigmatization, and real experiences like community or household exclusion, discrimination, and harmful behaviors (Stangl et al., 2019; Sotgiu & Dobler, 2020).

Stigma impacts not only individuals but also entire families. Our study found TB stigma exists among family members of TB patients in Indonesia. Understanding ‘family stigma’ is essential to reduce social and emotional distress and to prevent families from avoiding support and treatment (Park & Park, 2014). Such stigma can hinder individuals from accessing TB care, resulting in delays, poorer treatment outcomes, and increased transmission risk within families and communities (Datiko et al., 2020; Soemarko et al., 2023). Within families, TB stigma may appear as lack of support, isolation, or shame toward a member with TB (Ngurah et al., 2018). People with TB often face social ostracism from friends and relatives. Similar to our findings, TB patients face significant stigma from family and friends (Kamble et al., 2020). One study showed that married women are sometimes prejudged, experiencing neglect from family members who expect them to fulfill traditional caregiving roles even when unwell (Mukerji & Turan, 2018). Lay, Manurung, and Landi (2021) identified that family stigma stems from a lack of knowledge about TB—its causes, transmission, and treatment. Misconceptions lead to mistreatment, such as believing TB can be caught from talking or sharing towels. However, education and counseling from healthcare professionals help change perceptions, fostering recognition of TB as a serious disease. Addressing TB stigma effectively involves seeking care at health facilities (Lay et al., 2021).

Family support involves help from immediate family members—such as spouses, children, siblings, and parents—for individuals with tuberculosis. Such support makes patients feel recognized and cared for, helping them to complete their treatment without neglect or abandonment (Lay et al., 2021). TB was once viewed as a family disease because of its extensive impact on all family members. The stigma linked to TB originates from its perception as an unclean illness (Fuady et al., 2023). Much of this shame appears to result from a lack of understanding about tuberculosis.

Social or public stigma involves prejudice, discrimination, or stereotypes that diminish an individual’s self-esteem by promoting negative attitudes or marginalizing them (Ali, 2019; Hadawiyah et al., 2022). This study found that TB patients face stigma in social and public contexts. Consistent with other research, societal stigma adversely impacts TB patients (Hariadi et al., 2023; Stangl et al., 2019). TB influences social interactions and is linked to high community stigma, which can discourage patients from seeking or sticking to treatment. Stigma can be driven not only by patients’ own choices but also by societal attitudes and health workers blaming TB patients for their condition, thereby reinforcing community stigma (Datiko et al., 2020). Our findings agree with previous studies showing that TB patients experience significant stigma stemming from environmental factors and fears of transmission (Rizqiyah, 2021). A common negative perception is that TB is brought by the patient and can be transmitted, with many viewing it as a cursed disease (Sajodin et al., 2022). Patients often feel unable to socialize and become isolated to avoid insults, gossip, or rejection (Fuady et al., 2023; Sajodin et al., 2022). Literature already documents various aspects of TB stigma, including social exclusion, prejudice, and discrimination (Mohammedhussein et al., 2020; Karat et al., 2021). Beyond dealing with symptoms and side effects, many patients also face financial hardship due to reduced or lost income, insecure living conditions, social isolation, mental health issues, and strained relationships (Karat et al., 2021).

Social support is essential for improving outcomes among TB patients. Our study indicates that one key factor behind TB stigma is a lack of knowledge and understanding within families and communities. These factors include individuals’ knowledge levels and psychosocial aspects such as risk perception and fear of infection (Muhidin et al., 2020). Awareness about TB significantly affects how people behave towards those with the disease (Hariadi et al., 2023). The fear influences not only TB patients but also those around them, leading to concerns such as fear of contracting or transmitting the disease, delays in diagnosis, and treatment nonadherence (Courtwright & Turner, 2010; Craig et al., 2017). Stigma sources also include fears related to disease, transmission, and death. Feelings of stigma from genuine threats or perceived community attitudes may result in discrimination based on various traits, illnesses, or societal factors (Hariadi et al., 2023). The fear of infection and of spreading TB has been widely documented in studies exploring TB-related stigma in different contexts (Chang & Cataldo, 2014; Sommerland et al., 2017).

Conclusion

In this study, we found that stigma mediation was highly personalized and depended on an individual’s understanding and personal experiences with stigma. This was evident in the differing perspectives of community members, with some believing that stigma labeling occurred at facilities, while others believed it occurred through ward-based outreach teams. People’s perceptions of stigma significantly influenced their use of healthcare services, including a preference for receiving care at home rather than in a healthcare institution or for avoiding care altogether. We also found that one factor contributing to TB stigma is a lack of knowledge and understanding among families and communities. Further study is essential to develop a comprehensive understanding of how to address TB stigma effectively and responsibly, as interventions have the potential to inadvertently perpetuate stigmatization.