¹ Faculty of Nursing and Midwifery, Universitas Binawan, Jakarta, Indonesia
² School of Nursing, Padjadjaran University, Bandung, Indonesia
³ Faculty of Nursing, Jember University, Java, Indonesia
⁴ Faculty of Nursing, College of Health Sciences, University of Sharjah, Sharjah, United Arab Emirates
⁵ Behavioural Science Institute, SEHA, Sakina, Al Ain, United Arab Emirates
⁶ College of Nursing, University of Baghdad, Baghdad, Iraq

Aan Sutandi
Roles: Conceptualization, Data Curation, Investigation, Methodology, Validation, Writing – Original Draft Preparation, Writing – Review & Editing

Henny Suzana Mediani
Roles: Conceptualization, Formal Analysis, Methodology, Validation, Writing – Original Draft Preparation, Writing – Review & Editing

Apriana Rahmawati
Roles: Conceptualization, Methodology, Validation, Writing – Original Draft Preparation, Writing – Review & Editing

Sari Narulita
Roles: Conceptualization, Data Curation, Investigation, Methodology, Validation, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Maryuni Maryuni
Roles: Conceptualization, Data Curation, Formal Analysis, Methodology, Validation, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Fatma Refaat Ahmed
Roles: Investigation, Methodology, Validation, Writing – Original Draft Preparation, Writing – Review & Editing

Nabeel Al-Yateem
Roles: Formal Analysis, Methodology, Validation, Writing – Original Draft Preparation, Writing – Review & Editing

Muhammad Arsyad Subu
Roles: Data Curation, Investigation, Methodology, Validation, Writing – Original Draft Preparation, Writing – Review & Editing

Richard Mottershead
Roles: Methodology, Writing – Original Draft Preparation, Writing – Review & Editing

This study used a qualitative descriptive design with individual semi-structured interviews. Qualitative description was selected because the aim was to provide a comprehensive, practice-oriented account of participants’ experiences while remaining close to the language and meanings expressed in their narratives. Sandelowski (2000, 2010) argues that qualitative description is particularly appropriate when researchers seek a direct yet analytically meaningful account of health-related experiences rather than the theory generation of grounded theory or the philosophical interpretation associated with phenomenology. The approach is therefore well suited to clinically focused nursing and public health research in which findings are intended to inform service delivery and intervention development.

The methodological design was distinguished from the analytical method. Qualitative description constituted the overarching design, whereas inductive qualitative content analysis provided the analytical strategy. Qualitative content analysis permits systematic examination of meaning units, codes, similarities and differences within textual data and can move from manifest description towards higher levels of abstraction while maintaining traceability to participants’ accounts (Graneheim & Lundman, 2004; Graneheim et al., 2017). An inductive approach was used because the study sought to derive patterns from participants’ narratives rather than apply a predetermined coding framework (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005).

The revised manuscript was prepared with reference to the Consolidated Criteria for Reporting Qualitative Research (COREQ) and the Standards for Reporting Qualitative Research (SRQR) (O’Brien et al., 2014; Tong et al., 2007). COREQ is a 32-item framework addressing the research team and reflexivity, study design, and analysis and reporting of interview and focus-group studies. The frameworks were used to strengthen transparency of reporting and were not used to retrospectively attribute procedures that were not undertaken.

The study was conducted between July and November 2023 at Esnawan Antariksa Hospital, Halim Perdanakusuma, Jakarta, and a District Public Health Centre (Puskesmas) in East Jakarta. These settings represent hospital and primary-care components of the urban TB treatment pathway. The study was intentionally situated within these two Jakarta services; the findings are therefore presented as contextually grounded rather than nationally representative.

Purposive sampling was used to recruit people with direct experience of TB treatment who could provide information-rich accounts of stigma and stigmatization. Thirty participants were recruited: 12 women (40.0%) and 18 men (60.0%), aged 25–57 years. Most had been living with TB for at least one year and were receiving treatment through either a Puskesmas or hospital. All enrolled participants were in the continuation phase of treatment at the time of interview, and the majority were receiving isoniazid and rifampicin.

Eligible participants were adults aged 18 years or older who had been diagnosed with TB for at least 6 months, were currently receiving treatment or had recently completed treatment, were able to provide informed consent, and had sufficient experience of the treatment trajectory to discuss TB-related stigma. The eligibility framework also allowed inclusion of people who had experienced treatment delay or non-adherence, as well as those who had successfully completed treatment. Exclusion criteria were severe illness requiring immediate hospitalisation, residence in the same household as an already enrolled participant (to maintain independence of accounts), age younger than 18 years, and a TB duration of less than 6 months. Although recently treated completers were eligible, all participants enrolled in the final sample were reported to be in the continuation phase at interview.

Participant demographic and clinical characteristics are summarised in Table 1.

Potential participants were approached by the first and second authors (AS and HSM) at Puskesmas facilities, hospitals, or in their homes. Eligibility was assessed against the study criteria before enrolment. Each prospective participant received a participant information sheet and a verbal explanation of the study, was given an opportunity to ask questions, and provided written informed consent before interview. Participation was voluntary, and participants were informed of their right to withdraw without unfavourable consequences.

Data were generated primarily through 30 individual face-to-face semi-structured interviews conducted in Bahasa Indonesia. Interviews lasted approximately 35–55 minutes and took place in private rooms within the hospital and public health centre, including conference rooms and nurses’ offices, with home-based contact used where appropriate during recruitment. Participants were given sufficient time to reflect before responding and were able to ask questions after the interview. Semi-structured interviewing enabled consistent exploration of TB-related stigma while allowing participants to elaborate on personally significant experiences, relationships and meanings.

All interviews were conducted by AS, HSM, NAY and MAS. These researchers had experience in qualitative interviewing and health research. Field notes and research memos were used to capture contextual observations and emerging analytical reflections, and relevant digital and physical records within the hospital and Puskesmas were reviewed to support contextual understanding. These supplementary materials informed interpretation of participants’ experiences but were not treated as substitutes for the interview data.

All interviews were audio-recorded and transcribed verbatim. AS, HSM, NAY and MAS conducted the interviews and were responsible for transcription of the interview material. Transcripts were checked against the recordings during data preparation to support accuracy before coding. Data analysis and coding were undertaken in Bahasa Indonesia so that initial interpretation remained as close as possible to participants’ original language and cultural expression.

Following analysis in Bahasa Indonesia, the same four researchers (AS, HSM, NAY and MAS) translated the interview material required for English-language reporting. Cross-language qualitative research may lose nuance when meaning is transferred between languages; accordingly, translation focused on conceptual fidelity rather than literal word-for-word substitution (van Nes et al., 2010). The translators were fluent in Bahasa Indonesia and English and reviewed wording, terminology and sentence structure to preserve the intended meaning of participants’ accounts. Two additional nurse colleagues with IELTS scores of 7.0 or above independently compared the original Indonesian material with the English translations to assess clarity and fidelity.

Data were analysed using inductive qualitative content analysis informed primarily by Graneheim and Lundman (2004) and Graneheim et al. (2017), with complementary guidance from Elo and Kyngäs (2008) and Hsieh and Shannon (2005). Analysis was iterative. Transcripts were read repeatedly to develop familiarity with each account and with the dataset as a whole. Text relevant to the study aim was then identified as meaning-bearing segments, including words, phrases, sentences and paragraphs.

Meaning units were examined in context, condensed while retaining their core meaning, and assigned descriptive codes. Codes were compared for similarity and difference and were progressively clustered into more abstract groupings. The analysis moved repeatedly between coded segments, surrounding transcript text and the developing thematic structure to preserve contextual meaning and avoid treating statements as isolated fragments (Graneheim & Lundman, 2004).

Sections relating to participants’ experiences of different forms of TB stigma were collated in working documents. Codes and meaning units were compared within and across accounts for similarities and differences, and the developing coding framework was refined iteratively. Coding was undertaken in Bahasa Indonesia by four researchers (HSM, SN, MAS and MM). The final codebook was implemented in QSR NVivo 12 to organise and retrieve material across the full dataset, including transcripts that had initially been coded manually. NVivo functioned as a data-management tool; coding decisions, abstraction and interpretation remained researcher-led. Final themes were reviewed and further developed by the full author group, and consensus was reached on the final thematic structure.

The final analysis generated four overarching themes: internalised stigma or self-stigma; family stigma; public/social stigma; and reasons for TB stigmatization. Themes were understood as coherent patterns of meaning rather than simple counts of repeated words or topics. Quotations were selected to demonstrate the empirical basis of the interpretation and are used in the Results to support, rather than substitute for, analytical narrative.

Primary coding was conducted by HSM, SN, MAS and MM. The coding team compared meaning units and codes across transcripts and refined the developing codebook iteratively. Potential differences in interpretation were addressed through collective review of the coded material and continued reference to the source transcripts. The final themes were subsequently reviewed and further developed by the full author group, and consensus was reached on the final thematic structure. An external researcher also reviewed each component of the coded data during the coding process, providing an additional layer of analytical scrutiny.

An illustrative example of the analytical progression from participant meaning units through condensation and coding to subthemes and final themes is presented in Table 2.

Trustworthiness was addressed through procedures relevant to credibility, auditability/dependability and fittingness/transferability (Chiovitti & Piran, 2003; Graneheim & Lundman, 2004). Credibility was supported by purposive recruitment of participants with direct experience of TB treatment, 35–55-minute interviews, repeated engagement with the transcripts, and detailed manual coding. Auditability/dependability was strengthened by an explicit analytical pathway, a progressively refined codebook, NVivo 12 data management, multi-researcher coding and external review of coded material. Confirmability was enhanced by retaining traceability between participant accounts, meaning units, codes, subthemes and final themes, and by using quotations to show the empirical basis of interpretation. Transferability was supported by detailed description of the Jakarta settings and available participant characteristics, allowing readers to judge relevance to other contexts without implying statistical generalisability.

Reflexivity was recognised as important because qualitative data are co-produced through interaction and interpreted by researchers whose clinical, disciplinary and cultural positions may shape what is noticed and how it is understood (O’Brien et al., 2014; Tong et al., 2007). The research team comprised nursing and health-science academics and clinicians with qualitative research experience. Field notes and analytic memos supported reflection during data generation and analysis, while external review of coded material and whole-author review of the final themes exposed interpretations to perspectives beyond the primary coding group.

Ethical approval was obtained from the Binawan University Health Research Ethics Committee (REC) (No. 033/KEPK-UBN/I/2023). Before data collection, participants received a comprehensive explanation of the study and provided written informed consent. They were informed of their right to withdraw without unfavourable consequences. Strict confidentiality and anonymity procedures were established because interviews addressed potentially sensitive experiences of illness, rejection, family relationships and discrimination.

Each participant was assigned an alphanumeric code (e.g., P1, P2, P3), and identifiers were removed from transcripts and reported quotations. Audio-recordings and transcripts were stored on a password-protected computer in the first author’s office and were accessible only to the research team. Study materials will be retained for three years and then securely disposed of in accordance with the approved protocol.

Participants described internalised stigma as a process through which external judgements became incorporated into their own sense of self. Shame, perceived loss of status and anticipation of rejection altered how some participants understood their place in the community. Internalised stigma was therefore not simply an emotional response to illness; it reflected the absorption of social meanings attached to TB.

Status loss and shame

Some participants described feeling socially diminished after being identified as a person with TB. The language of humiliation and discredit suggested that diagnosis was experienced as a change in social status, with consequences for dignity and belonging.

“Yes, I experience a status loss … shame. In society, insult and discredit exist … I am insulted. I am considered a TB patient and humiliated. I have been offended. I am sad, and my heart sobs uncontrollably …” (Participant 4)

This account illustrates how social labelling was internalised as shame and emotional pain. The participant did not describe stigma as an abstract community attitude; it was experienced as an assault on social identity and self-worth.

Rejection, avoidance and perceived discrimination

Anticipated and experienced rejection also contributed to self-stigmatization. Participants described becoming highly aware of how others responded to their presence, with avoidance interpreted as evidence that they had become socially unacceptable.

“Indeed, those afflicted with tuberculosis experience social rejection. The community disapproves of this illness. It appears that only a few people can accept our condition without rejection. Additionally, a problem is that tuberculosis causes avoidance … I’ve noticed that others tend to avoid my presence …” (Participant 15)

The account demonstrates the interaction between perceived community judgement and the participant’s own expectations of rejection. The experience of avoidance reinforced a sense of difference from those considered socially ‘normal’.

“… I experience discrimination … We [people with TB] are often subjected to unfair treatment compared with individuals with other medical conditions, such as hypertension and diabetes. Yes, I am a victim of discrimination.” (Participant 25)

Here, stigma was interpreted comparatively: the participant contrasted TB with non-communicable illnesses and perceived that the TB diagnosis attracted a qualitatively different moral and social response.

Family relationships were an important site of both potential support and stigmatization. Participants described circumstances in which relatives’ embarrassment, fear or rejection reduced the support available during treatment. Family stigma therefore extended the social consequences of TB into the household and could transform relationships that might otherwise function as key sources of practical and emotional support.

Reduced family support

Several participants linked reduced family support to relatives’ feelings of shame. In these accounts, stigma was not confined to the person diagnosed with TB but affected how family members believed they themselves might be perceived.

“… My family members do not provide support for me. Occasionally, because of my condition, my parents experience feelings of humiliation … my father and mother do not support me. Because … yes, they [family members] experience a feeling of shame.” (Participant 10)

The quotation illustrates an associative dimension of stigma: perceived family shame translated into reduced support for the person undergoing treatment. This is clinically important because family support can be central to coping with a prolonged treatment trajectory.

Family rejection

Participants also described rejection within extended families. Such rejection appeared to persist even when the person with TB was engaged with healthcare, suggesting that treatment itself did not necessarily remove the social meaning attached to the diagnosis.

“Yes, they are typically rejected … Families may find it particularly challenging to convince long-term TB patients to accept their relatives. Because they believe that a person with TB will be disgraced. Then, an individual with TB is rejected or refused.” (Participant 16)

This account suggests that family stigma may be sustained by anticipated disgrace and social judgement rather than solely by immediate concern about infection.

Public and social stigma was expressed through labelling, withdrawal of support, isolation, exclusion and discrimination. Participants’ accounts indicated that TB could become a durable social label with consequences extending into employment and community participation. Public stigma was therefore experienced both symbolically, through identity and reputation, and materially, through lost opportunities and exclusion.

Social labelling and employment consequences

Participants described being labelled by others as a ‘TB’ or ‘ex-TB’ person. The persistence of the label beyond active illness was particularly important because it could affect opportunities after treatment.

“… I am stigmatized or labelled by my society … I am labelled as a TB … or other as an ex-TB person. Then, if I look for employment, it is challenging for me …” (Participant 22)

The participant’s description shows how a medical history can become a continuing social identity. The reference to employment demonstrates that stigma may have economic consequences even after treatment.

Limited social support and isolation

Some participants described a marked absence of community support and a sense that others wished to distance themselves from them.

“Support from them [people in the community] is limited. Fully true … I do not have any form of support … I have no support whatsoever. Members of the community only have concerns with themselves. No, I do not get support from others at this time. They want me to leave …” (Participant 21)

The account conveys more than loneliness; it suggests perceived social expulsion, with the participant understanding limited support as an indication that their continued presence was unwelcome.

“Yes … without a doubt, this remains there. They isolated me [members of the community]. Consequently, I was angry and had no desire to interact with the residents of my community. I continue to experience [the desire for] vengeance due to my rejection and isolation.” (Participant 7)

Here, enacted exclusion generated anger and reciprocal withdrawal. The account illustrates how stigma can alter social relationships in both directions: community avoidance produces emotional injury, which can subsequently reduce the participant’s willingness to re-engage.

Lack of social acceptance and discrimination

Participants also described broader patterns of rejection and fear within their communities.

“People with tuberculosis were excluded from society due to societal rejection. Others reject them. They will avoid individuals who are afflicted. Individuals experience fear because of this [TB] …” (Participant 4)

Fear was understood as a central mechanism linking the diagnosis to avoidance. In some accounts this progressed from interpersonal distance to overt discrimination.

“Individuals are discriminated against due to tuberculosis. Yes, it is true … discrimination. Employers are unwilling to rehire an individual with tuberculosis in his or her previous position because he or she is ex-tuberculosis …” (Participant 12)

This quotation demonstrates the material consequences of stigma: the designation of ‘ex-tuberculosis’ was perceived to restrict return to previous employment and therefore had potential financial as well as social effects.

Participants attributed stigma to interconnected deficits in knowledge, fear of infection, concern about transmitting TB to others and the social association of TB with HIV/AIDS. These accounts suggest that stigmatization was not driven by a single misconception; rather, it emerged from the interaction between incomplete biomedical knowledge, emotional responses to contagion and pre-existing stigma attached to other conditions.

Limited knowledge and misconceptions

Participants repeatedly linked avoidance to incomplete understanding of TB causation, transmission and curability. Particularly important was the belief that social risk persisted even after treatment or recovery.

“Regardless of the extent of treatment administered or the announcement of recovery, people will continue to avoid him out of concern that they may transmit the disease to another. It is because of a lack of knowledge. They do not understand that TB can be cured …” (Participant 9)

The participant explicitly connected social avoidance with misunderstanding of curability. This distinction is important because it indicates that stigma can persist after the biomedical basis for isolation has changed.

Fear of infection

Fear was described as a powerful driver of social distance. Participants understood community responses as motivated by the possibility of acquiring TB, even where the nature or magnitude of risk was not well understood.

“The community members are experiencing fear, sir … feeling fearful, frightened, or apprehensive. Yes, society is fearful. Indeed, individuals often experience fear and tend to flee from threatening situations. Due to societal fear, those suffering from TB are often neglected.” (Participant 25)

This account positions fear as a mechanism through which a perceived health threat is translated into neglect of the person experiencing the disease.

Fear of transmitting TB to others

Fear was not restricted to community members. Some participants themselves withdrew because of concern that they could harm others, showing how public-health messages about transmission may be internalised in ways that promote social isolation.

“… I choose to be alone. I do not like being with another person … She [a mother] informs me not to be close to a small child because she is at risk of contracting TB. Yes, I chose to withdraw from them. I might infect them …” (Participant 11)

The participant’s withdrawal can be interpreted as simultaneously protective and stigmatizing: concern for others’ safety led to self-isolation and reduction in ordinary social contact.

Association with HIV/AIDS

Participants also described fear that TB could be interpreted as evidence of HIV infection. This represents intersecting stigma, whereby the social meaning of one condition is intensified through association with another highly stigmatised diagnosis.

“I was not encouraged by family members to undergo HIV testing, as they would blame me. You know, if someone discovered he was positive [HIV/AIDS] … HIV is among the most feared diseases among individuals.” (Participant 15)

The account suggests that HIV-related stigma may create an additional barrier to testing and disclosure for people with TB. It also illustrates how stigma can operate through association rather than through the TB diagnosis alone.

A principal strength of this study is its focus on the perspectives of people receiving TB treatment themselves. The qualitative descriptive design allowed participants to describe stigma across personal, family and community domains in language closely connected to everyday experience. Recruitment from both hospital and primary-care settings provided perspectives from two points in the urban TB-care pathway. The use of semi-structured interviews, contextual field notes and iterative content analysis generated a dataset capable of demonstrating how stigma is experienced and interpreted rather than merely measuring its prevalence. The findings also have strong contemporary relevance because recent Indonesian research has identified substantial co-occurring stigma, depression and unmet psychosocial-support needs (Fuady et al., 2024).

Several limitations should nevertheless be recognised. First, participants were recruited from only two urban healthcare facilities in Jakarta; the findings should therefore not be treated as representative of Indonesia nationally, particularly given the country’s cultural, geographic and health-system diversity. Second, purposive sampling prioritised experiential depth rather than population representativeness. Although age, sex, treatment duration and treatment context were available, occupation, living environment and setting-specific participant counts were not available in the material supplied for this revision, limiting finer assessment of transferability. Third, stigma is socially sensitive, and interview accounts may have been influenced by recall, social desirability, interview context and participants’ perceptions of the researchers. Fourth, the study involved translation from Bahasa Indonesia into English. Although analysis was undertaken in the original language and translations were independently reviewed for clarity and fidelity, some linguistic or cultural nuance may nevertheless have been altered. Finally, the study relied on self-reported experiences and did not independently verify the reported behaviour or attitudes of family, community members or employers.

Despite these limitations, the study contributes by integrating four dimensions of stigma within a single qualitative account: internalised stigma, family stigma, public/social stigma and participants’ explanations for stigmatization. This helps move the literature beyond documenting whether stigma exists towards understanding how fear, misinformation, labelling and social relationships interact. The findings support a multilevel model of response that combines accurate communication with psychological support, family engagement, peer-led approaches, community dialogue and protection from discrimination.

Participant data contain sensitive personal information, and unrestricted public sharing could compromise confidentiality and anonymity. In accordance with the approved ethics arrangements, access may be considered for qualified researchers with a legitimate academic purpose under conditions that protect participant privacy. Requests should be submitted in writing to the corresponding author, Dr Aan Sutandi ([email protected]).

The authors thank all study participants and the leadership and staff of Esnawan Antariksa Hospital, Halim Perdanakusuma, Jakarta, and the District Public Health Centre in East Jakarta for supporting the study.

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Sutandi A, Suzana Mediani H, Rahmawati A et al. TB Stigma and Stigmatization Experienced by People with Tuberculosis: A Qualitative Study in Jakarta, Indonesia [version 2; peer review: 2 approved]. F1000Research 2026, 15:1130 (https://doi.org/10.12688/f1000research.177509.2)

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VERSION 2

PUBLISHED 17 Sep 2026

Revised

Reviewer Report 25 Sep 2026

Tintin Sukartini, Universitas Airlangga, Surabaya, East Java, Indonesia 

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Reviewer Report 21 Sep 2026

Shwikar Othman, University of South Australia, Adelaide, South Australia, Australia 

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VERSION 1

PUBLISHED 10 Jul 2026

Reviewer Report 10 Aug 2026

Tintin Sukartini, Universitas Airlangga, Surabaya, East Java, Indonesia 

Approved with Reservations

VIEWS 0

Reviewer Report 06 Aug 2026

Shwikar Othman, University of South Australia, Adelaide, South Australia, Australia 

Approved with Reservations

VIEWS 0