Anticipated stigma

Anticipated stigma most commonly manifests in a desire to hide one’s own disease status or the disease status of family members [15–22]. A 2010 study of 1,977 PWTB found that 60% of the respondents hid their disease status from neighbors and friends [15]. In a 2021 study of pregnant women in Pune, 29% stated that they would hide their disease status if they were to develop TB [23], while another study found that 13.8% of women and 17.5% of men would be secretive about the TB diagnosis of a family member [18]. Similarly, a 2020 study found that 18.6% of men and 19.4% of women would hide the TB status of a family member [24]. A 2023 study found that 73% of PWTB wanted to keep others from knowing about their TB status [25]. This desire to hide one’s disease status was associated with fears of rejection and discrimination, which were reported by 38% and 31% of respondents, respectively, in data collected in 2007 in Chennai [4]. In other studies, PWTB revealed fear of being excluded from work or school if they revealed their TB diagnosis, or if someone discovered their TB status based on their symptoms [13,20,26].

The desire to hide disease status from family members was less common [4,15,27]. In a 2020 study of PWTB in Kolkata, 98.5% of PWTB disclosed their disease status to family, compared to 66.4% to neighbors and 62.1% to colleagues [28]. In a study using 33 in-depth interviews of PWTB in Karnataka, younger PWTB were more likely to hide their disease compared to older PWTB [27]. Persons in rural areas had less success than those in urban areas due to increased interactions with neighbors [27].

Perceived community stigma

A study of over 4,000 members of the general population in 30 districts of India found that 73% and 98% of respondents, respectively, had stigmatizing and discriminating views towards PWTB [29]. Community members stated that PWTB were a threat to the community and that they would not share a meal with a PWTB [29]. In a study in Delhi, community members associated developing TB with engaging in “deviant” behaviors, such as using drugs or alcohol or engaging in indiscriminate sexual activity [22].

Researchers interviewed 80 male and 80 female community members in Maharashtra after presenting them with vignettes describing PWTB [30]. The respondents described a desire to stay away from PWTB and their children and felt that PWTB and their belongings should be isolated [30]. Perceived stigma also intersects with anticipated stigma, with community respondents stating that other people would be likely to stigmatize PWTB. For instance, one respondent explained that:

People will not talk to her. They will not go near her or eat food cooked by her. Her family members will keep her utensils separate. Even while offering tea, she will clean the utensils with hot water [30].

Perceived stigma has important implications for marital prospects of PWTB and their family members. Respondents stated that arranging marriages for PWTB and their family members would be challenging and there would also be difficulties in current marriages, such as marital discord or a lack of support [30]. In a survey in Mysore in 2012, 35% of high school students said that PWTB should not get married [31].

A 2014 survey on 212 physicians in Pune found that only 49% of the physicians reported compassion and a desire to help PWTB [32]. Stigma from physicians has serious implications, including lower treatment completion rates among PWTB who felt unsupported during their treatment [27,32,33]. Importantly, physicians who attended a training program or knew a colleague with TB were three times more likely to report compassion and a desire to help compared to physicians who did not do so [32].

Enacted stigma

Enacted stigma could come from community members, family members, and healthcare workers. While experiences of enacted stigma were less common than anticipated and perceived stigma, enacted stigma was substantially higher in women than in men. For instance, women experienced more community gossip and verbal abuse than men [13]. Moreover, women reported engagements being called off after their TB diagnosis [13]. Married women mentioned abandonment and isolation from both their husbands and other family members after receiving their TB diagnosis [34]. PWTB and their household members also described not being allowed to use common areas or bathrooms, relatives refusing to eat or drink at their house, losing their jobs, and having their neighbors prevent their children from playing together [19,21].

Healthcare workers were also sources of enacted stigma. In a 2003 study of PWTB who left treatment before completion, PWTB cited rude behavior from healthcare workers as a reason for discontinuing treatment [33], as did PWTB in a 2016 study in Gujarat [35]. In a 2015 qualitative study of PWTB who were lost to follow-up, PWTB reported poor treatment from their healthcare providers [36], while a qualitative study from 2021 found that nearly a quarter of PWTB interviewed had experienced negative treatment from their healthcare providers [19]. In a qualitative photovoice study from 2023, a participant shared a story of being shouted at and forced to wait until all non-TB patients had left before she would be seen by healthcare providers [21]. Other participants shared similar stories of being reprimanded or moved to the end of the waiting room line.

Internalized stigma

PWTB reported decreased self-worth due to their TB status [13,21], as well as feelings of shame and embarrassment [25]. In a study of 202 pregnant women with and without latent TB, 40% stated that it was shameful to have TB [23].

PWTB also described feelings of anxiety and depression, as well as suicidal ideation due to stigma [17,19,37,38]. A 2024 study found that 37.5% of persons with MDR-TB experienced depression, while 45.2% experienced anxiety, significantly higher than their household contacts [37]. Stigma was associated with three-fold higher odds of depression and two-fold higher odds of anxiety among PWTB [37]. Persons with higher internalized and perceived stigma are more likely to develop depression, which negatively affects adherence [39].

Gender differences in stigma

The majority of studies showed that women experience disproportionately greater TB stigma. One study found that the odds of stigma were 13.25 (95% CI 4.14-42.1) times higher in women compared to men [25]. Only one study, a 2008 study of 276 PWTB in southern India, found no gender difference in social stigma, and reported that males had higher perceived stigma compared to women [40].

Compared to men, female PWTB described more anticipated stigma and faced more pressure to keep their disease status secret, even from family members [34,36,41]. In interviews of 2,115 PWTB in Tiruvallur, women were more likely than men to describe feeling inhibited discussing their treatment with family members (21% of women vs 14% of men) [9]. Community respondents stated that women were more likely to hide their TB diagnosis due to greater fears of isolation and rejection [42]. In a 1997 study in Mumbai that consisted of sixteen in-depth interviews with PWTB attending a government clinic, the women described a desire to hide their disease status, as well as increased difficulties doing so due to closer monitoring of their movements compared to men [41]. As women are more likely than men to work as domestic workers, they are particularly vulnerable to dismissal if their employers learned of their TB status [41]. Women even reported hiding their disease status from their husbands and fearing that their disease status stigmatized their children [34]. In a 2008 study, female sex was significantly associated with diagnostic delay, partially due to disease-related stigma exacerbated by gender [34].

A study in Kerala that presented community members with vignettes focusing on PWTB found that stigma was highest among women receiving female vignettes (p < 0.0001) [43]. Moreover, perceived stigma as it pertains to marital prospects disproportionately affects women. Female PWTB and their family members regularly described fearing reduced marriage prospects due to TB stigma [13,17,22,36,41]. Stigma can also have a negative effect on the matrimonial prospects of unmarried siblings and children of women with TB [17,19,22]. Community respondents stated that men - but not women - would be able to get married after recovering from TB [13]. Community members in Maharashtra, particularly men, disclosed that they did not want their sons to marry women with a history of TB [42]. Indeed, in a 2021 study in Tamil Nadu, five household members of PWTB divulged hiding either their wife’s or daughter’s TB diagnosis so that their daughters’ marriage prospects would not be affected [19].

The majority of studies found that women experienced more enacted stigma due to their TB status compared to men [5,8,9,15,17,20,36,41,44]. It is unclear whether there are gender differences in internalized stigma.

Not only do women experience greater stigma than men, they also receive less support than men. Two studies found that married female PWTB received less family support than married male or unmarried female PWTB [41,44]. While men generally reported their main concerns as being loss of wages and an inability to work, women primarily mentioned concerns regarding rejection from their husbands and in-laws [41]. Among PWTB in southern India, 69% of men but only 31% of women received support from their in-laws [40]. Women also described leaving treatment due to the pressure of household activities. In one study, community members stated that women would be obliged to support their husbands if they developed TB, but men would not be obliged to support their wives [42].

Impacts of stigma

Stigma is connected to mental health, with perceived stigma significantly associated with depression (AOR 3.2, 95% CI 1.1-5.3) and anxiety (AOR 2.2, 95% CI 1.1-6.3) in those with MDR-TB [37].

A 2010 study conducted 21 in-depth interviews with PWTB and 13 in-depth interviews with community health workers in Gujarat Province [17]. They found that PWTB reported fearing the disclosure of their disease more than they feared TB itself [17]. This fear of disclosure can have a direct impact on seeking medical care, reducing treatment adherence and completion. In a qualitative study from Kolkata, PWTB admitted delaying diagnosis for months due to fear of TB stigma and reflected that they may have acquired the disease from other individuals who had also delayed medical care due to stigma [28].

The desire to hide disease status has a direct impact on medical treatment. Many Indians receive directly observed therapy administered by community health workers and family members, and some PWTB described having their status disclosed by community members who had seen them receiving treatment [13,17]. Healthcare workers reported that PWTB asked them to stop visiting their homes for treatment or declined to visit treatment centers due to fear of disclosure [17,36,45]. A study in Thiruvallur interviewed 612 PWTB, and found that 6.7% of PWTB provided false names and addresses to avoid their disease status being exposed [16]. Elsewhere, healthcare workers described cases where PWTB refused to take medication in front of family members or in-laws, including one case where the person subsequently died [17]. Stigma can have effects even when not enacted, with these instances of anticipated stigma having direct impacts on PWTBs’ health and well-being.

The role of stigma on treatment adherence has been quantified. In a study in West Bengal of 145 people who defaulted from TB treatment, 51 (35%) were categorized as being in a ‘low stigma’ group and 94 (65%) in a ‘high stigma’ group. Those in the low stigma group were 8.59 times more likely to disengage from therapy later (more than 30 days after starting treatment, compared to 0–30 days after starting treatment) than those in the high stigma group (p = 0.001), suggesting that reducing stigma could improve adherence to treatment [10]. A 2024 study in Jharkhand and a 2016 study in Gujarat both found that stigma was a major barrier to treatment adherence [35,46]. Another study found that perceived discrimination was a predictor of unsuccessful treatment (AOR 2.61, 95% CI 1.04–7.84) [28]. A study in eastern India found that PWTB who reported high levels of stigma had 20.27 times higher odds of nonadherence [11].

A 2022 study in Sikkim found that increased stigma is significantly associated with depression, which then predicts lower adherence to treatment [39]. Another study found that PWTB who experienced stigma were 15-fold more likely to have depression than PWTB who did not have experience stigma [47]. Similarly, a study focusing on persons with drug-resistant TB found that those who experienced stigma were three times more likely to have depression than those without stigma [48]. A study in Gujarat found that PWTB who experienced high levels of stigma were 2.3 times more likely to experience depression (95% CI: 1.1-2.3), and this trend also extended to household contacts, with those experiencing high perceived stigma being 1.8 times more likely to experience depression (95% CI: 1.1-2.3) [49].

Knowledge and interventions to mitigate stigma

Despite the suggestion that education and awareness could improve stigma [16], studies examining the role of knowledge on stigmatizing attitudes and behaviors have had mixed results. One study found that training was able to decrease stigmatizing behavior among physicians [32], while another study found that limited knowledge about TB was significantly associated with stigmatizing attitudes (OR 14.99, 95% CI 6.98–32.1) [23]. However, a study of 3,823 participants in 30 districts using semi-structured questionnaires found that stigmatizing and discriminating attitudes were independent of respondents’ knowledge of TB [29]. In a 2024 study, PWTB were more likely to experience stigma if they themselves had reduced knowledge of TB (OR 3, 95% CI 1.005–8.95) [50]. A 2023 study found that PWTB with lower TB knowledge were more likely to experience stigma, and those who experienced stigma were then less likely to visit the TB clinic (p < 0.05) [25].

The 2021 Tamil Nadu and Puducherry study specifically focused on potential interventions to reduce community stigma and included interviews and focus groups with PWTB, household members, and key informants (such as program managers, government officials, and teachers) [19]. Participants’ suggestions to reduce community stigma included involving the entertainment industry; using social media to increase awareness; educating schoolchildren about TB; and instituting community interventions such as puppet shows or festivals. Participants also suggested counseling and support groups as ways to reduce internalized stigma among PWTB and their family members [19]. Table 2 shows potential interventions to reduce stigma or minimize its effects.

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Table 2. Potential interventions for each type of stigma.

https://doi.org/10.1371/journal.pgph.0005109.t002