Abstract
Background: Tuberculosis (TB)-related stigma remains a key barrier for people with TB to access and engage with TB services and can contribute to the development of mental illnesses. This study aims to characterise stigmatisation towards people with TB and its psychosocial impact in Indonesia.
Methods: This study will apply a sequential mixed method in two main settings: TB services-based population (setting 1) and workplace-based population (setting 2). In setting 1, we will interview 770 adults with TB who undergo sensitive-drug TB treatment in seven provinces of Indonesia. The interview will use the validated TB Stigma Scale questionnaire, Patient Health Questionnaire-9, and EQ-5D-5L to assess stigma, mental illness, and quality of life. In Setting 2, we will deploy an online questionnaire to 640 adult employees in 12 public and private companies. The quantitative data will be followed by in-depth interview to TB-related stakeholders.
Results: CAPITA will not only characterise the enacted stigma which are directly experienced by people with TB, but also self-stigma felt by people with TB, secondary stigma faced by their family members, and structural stigma related to the law and policy. The qualitative analyses will strengthen the quantitative findings to formulate the potential policy direction for zero TB stigma in health service facilities and workplaces. Involving all stakeholders, i.e., people with TB, healthcare workers, National Tuberculosis Program officers, The Ministry of Health Workforce, company managers, and employees, will enhance the policy formulation. The validated tool to measure TB-related stigma will also be promoted for scaling up to be implemented at the national level.
Conclusions: To improve patient-centered TB control strategy policy, it is essential to characterise and address TB-related stigma and mental illness and explore the needs for psychosocial support for an effective intervention to mitigate the psychosocial impact of TB.
Keywords: stigma, discrimination, mental illness, tuberculosis, quality of life
Introduction
The global community continues to face a high burden of tuberculosis (TB) with a current slow decline of TB incidence and mortality 1 . This scenario has been aggravated by the coronavirus disease 2019 (COVID-19) pandemic, which continues to negatively impact on the provision of essential TB services 2, 3 . Amidst these challenging conditions, a key barrier to accessing and engaging with TB services, which must be overcome to end TB globally, remains: stigma 4, 5 .
TB is a highly stigmatised and stigmatising disease. This is due to visible features associated with TB disease including weight loss, a misconception that TB is incurable, and its association with other stigmatising conditions such as poverty and human immunodeficiency virus (HIV). TB-related stigma contributes to undetected TB cases, delays in accessing timely TB diagnosis and care, poor TB treatment adherence, reduced likelihood of TB treatment success 6, 7 , and development of drug-resistant TB 8– 10 . Moreover, TB-related stigma may negatively impact employment opportunities for those affected. People with TB may not be hired because of their illness or a history of TB. They may also receive discrimination in the workplace such as unfair dismissal (sometimes because of unavoidable periods of absence), limited opportunity to advance training and promotion, and avoidance by management and co-workers 11, 12 . Such stigmatisation and discrimination in workplaces can also compound the psychosocial impact of TB including fear of, or realisation of, social isolation and/or rejection. In turn, these factors can contribute to the development of mental illnesses, such as depression and anxiety 13 .
Indonesia is a high TB burden country with 562,049 new TB cases in 2019. Despite this, there is limited evidence concerning risk factors and prevalence of the psychosocial consequences of TB including stigma and mental illness, as well as the interventions to mitigate them. To date, there have been only a few reports from Indonesia on the local and national scenario concerning TB-related stigma 9, 14, 15 . There is a pressing need for timely interventions to reduce stigma and combat mental illness amongst people with TB to enable them to access available services and achieve better health, psychosocial, and economic outcomes. It is also critical to identify stigmatisation and discrimination towards people with TB in the workplace. This data will be essential to design, develop, and implement locally-appropriate, acceptable, and impactful integrated psychosocial interventions for TB-affected households that address mental illness and stigma and to develop zero stigma and discrimination policies for the workplace 16, 17 . The Characterising and Addressing the Psychosocial Impact of Tuberculosis in Indonesia (CAPITA) study will fill this knowledge gap and provide scientific evidence for further policies to mitigate the psychosocial impact of TB.
Aims
CAPITA aims to assess (1) stigmatisation and mental health problems experienced by people with TB, (2) assess stigmatisation and discrimination towards people with TB in the workplace, and (3) explore the current national policy on TB-related stigma and identify potential future refinements of this policy.
Study design overview
CAPITA is a sequential mixed method study consisting of a quantitative approach followed by a qualitative approach using structured in-depth interviews, from February to November 2022. There will be two main settings in this study. The first setting is TB services-based population to answer aims (1) and (3). The second setting is workplace-based population to answer aims (2) and (3).
Setting 1: TB services-based population
Inclusion and exclusion criteria
In this setting, we will include adult (aged 18 years old and above) people with TB who are currently taking drug-sensitive (DS) TB treatment (either first or repeated first-line TB treatment) at public and private primary healthcare facilities that have provided free TB services under coordination of the Indonesian National Tuberculosis Program (NTP). People with TB will be excluded if they have completed TB treatment and/or are diagnosed with drug-resistant (DR) TB.
Sampling procedure
For this setting, CAPITA will be conducted in seven provinces which represent western (West Sumatera, Jambi, and Jakarta provinces), central (Bali, West Kalimantan, and South Sulawesi provinces), and eastern part of Indonesia (Maluku province). In each province, we will first pragmatically and purposively select two districts that are listed among those with the top five highest TB incidence in the province. Similar to HIV-related stigma, there may be differential TB-related stigmatisation across rural and urban areas. For example, perceived or anticipated TB-related stigma may be greatest amongst people who live in urban areas 18, 19 , but psychological distress because of TB may more likely occur among those living in rural areas 20, 21 . To obtain a clearer picture, we will select two sub-districts representing urban areas in one district while, in another district, we will select two sub-districts representing rural areas according to the Indonesian National Statistical Bureau ( Badan Pusat Statistik, BPS) classification 22– 24 . Jakarta, a capital of Indonesia, is an exception since all subdistricts in the province are classified as urban areas. In this case, we will select the four sub-districts according to the BPS estimates of their population density (very high and high density) 24 . The selection of all sub-districts will be consulted with the NTP program officers in province and district level.
The NTP program officers in district level will appoint a contact person in sub-district level who will help check the patient database. We will then interview the subjects who are selected according to inclusion and exclusion criteria (Point 3.1), either face-to-face, phone, or online interview. The responses will be stored electronically and monitored through REDCap®, a secure web application for managing online surveys 25 .
Sample size determination
This study will follow the STOP-TB Partnership’s recently published TB Stigma Assessment Implementation Handbook 13 and use a locally-adapted version of the TB-related stigma questionnaire by Van Rie (2008) 26 . Based on Van Rie’s study in Thailand, the average stigma score of patient perspectives toward tuberculosis was 27.6 with standard deviation of 6.1 26 . Using an alpha of 0.05, acceptable absolute precision 0.7, and a doubled-power because of urban-rural stratification, we need at least 584 subjects in this study for generalization.
We will stratify the subjects according to their treatment phase, which are initial (the first two months) and continuation (the next four months) phases of treatment. We will make the assumption that people with TB’s perception or experience of stigma and mental health problems may be most severe during the initial treatment phase. Therefore, we will apply a recruitment ratio of 3:2 between people with TB who are in their initial and continuation phases of treatment. The allocation of people with TB between urban and rural sub-districts will be 1:1.
In addition, we also assume that, amongst other factors, stigmatisation and mental health problems may lead people with TB to discontinue the treatment or be lost to follow up (LTFU), which have recently been measured as five to 16% 16, 27 . These people who have discontinued or been LTFU are then potentially re-treated at a later date. For this reason, we will select five patients taking TB re-treatment per sub-district (see Table 1 ). In total, we will include 770 people with TB in this study. If the completed responses are still less than 98% of the expected sample size in one subdistrict after one month, and there are no other people with TB registered in that subdistrict, we will expand the sampling area to another subdistrict which has similar characteristics.
Table 1. Sample allocation in each province.
| Province | Urban sub-district | Rural sub-district | Total | ||||
|---|---|---|---|---|---|---|---|
| Initial phase | Cont phase | Re-treat | Initial phase | Cont phase | Re-treat | ||
| Jambi | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| West Sumatera | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| Jakarta | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| West Kalimantan | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| Bali | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| South Sulawesi | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| Maluku | 30 | 20 | 5 | 30 | 20 | 5 | 110 |
| Total | 210 | 140 | 35 | 210 | 140 | 35 | 770 |
Cont phase, continuation phase; Re-treat, re-treatment
Instruments
We will first do a cross-cultural adaptation of the TB Stigma Scale questionnaire 26 and validate it to the Indonesian context. To measure mental health impact among TB-affected people, this study will use the Patient Health Questionnaire-9 (PHQ-9), which has previously been applied and validated in Bahasa Indonesia 28, 29 . This study will also inform the design of future psychosocial intervention. Therefore, we add ten questions to measure respondents’ needs for psychosocial support, such as home visit, community meeting, and counseling (see Supplement A in the Extended data 30 ).
The cultural adaptation of the TB Stigma Scale questionnaire will follow the The Professional Society for Health Economics and Outcomes Research (ISPOR) Framework: forward translation, reconciliation, back translation, harmonization, cognitive debriefing (piloting), proofreading, and finalisation 31 . All combined questionnaires will be harmonized in an expert panel meeting involving experts from community medicine, psychiatry, pulmonology, the Indonesian NTP, people with TB, and civil society representatives. The final questionnaire will be field-tested on 20 participants prior to study initiation. The field-testing will include cognitive debriefing to test wording used in the questionnaire and to check understandability, interpretation, and cultural relevance of the translation. The results will be finalized before implementation.
At the end of interview, people with TB will be also asked set of questions of the EQ-5D-5L questionnaire to measure their health-related quality of life 32 . This questionnaire consists of five dimensions: mobility, self-care, usual activities, pain/discomfort, anxiety/depression with five levels of severity. We will also add the EQ-5D-3L questionnaire to compare the sensitivity, reliability, and ceiling effects between three (3L) and five levels (5L) of severity. Both questionnaires have been applied and validated in the Indonesian context 33 .
Desk review
We will do a desk review to explore the current national policy on TB-related stigma. The review will include Indonesian Law (Undang-Undang), President Regulation (Peraturan Presiden), President Decree (Keputusan Presiden), Ministry Regulations (Peraturan Menteri), Ministry Decrees (Keputusan Menteri), and technical regulation within ministries, issued between 2000-2022. The review will be summarized in a table and the synthesis results will be a basis for probing questions in in-depth interview.
In-depth interview
To complement the questionnaires with people with TB, we will apply a qualitative approach to explore the current policy concerning stigma towards people with TB. The approach will be applied through in-depth interviews with purposively selected key stakeholders: six NTP program officers in sub-district level, six TB program officers/healthcare workers in Puskesmas level, 12 people with TB, and 12 household contacts of people with TB. This sample size of 36 participants has been selected as it is perceived to provide sufficient information power. Those who are invited to the in-depth interview will be selected purposively according to sub-district area (urban/rural), and we will ensure gender and age balance where possible. The in-depth interview will be held via online discussion, using a structured open-ended questionnaire.
Setting 2: Workplace-based population
To assess TB-related stigma in workplaces and explore the current TB-related stigma policy in workplaces and its further direction, CAPITA Study will target employees who work in the formal sector as the second study population.
Inclusion and exclusion criteria
In this setting, we will include adults (aged 18 years and above) who work at any level of employment in either a public or private company in the formal work sector and agree to participate in the study. There are no specific exclusion criteria for this population.
Sampling procedure
To recruit the respondents, we will first select companies purposively from a network database in the Master Program of Occupational Medicine, Faculty of Medicine, Universitas Indonesia and its alumni network, as well as Indonesian TB research network. The companies will be selected based on the number of employees, developed by the National Statistical Bureau: less than 100 employees (small to medium) and more than 100 employees (large) 34 . To support stratified analyses, the selection will also provide a balanced mix of private and public companies. We will contact the department of human resources at each company to help share the online questionnaire to their employees—either at manager or staff level. The responses will be monitored daily from the REDCap®.
Sample size determination
In this setting, we use the same assumptions applied for setting 1. According to Van Rie’s study in Thailand, the average stigma score of community perspectives toward tuberculosis was 27.9 with standard deviation of 6.1 26 . We apply a 5% of error and acceptable absolute precision 0.7, with double power because of stratification based on public and private owned companies. This study needs at least 584 subjects for generalizability. By assuming an attrition rate of 10%, this study needs at least 640 subjects ( Table 2).
Table 2. Sample allocation for workplace-based population.
| Company size | # of companies | # of participants per company | Total | |
|---|---|---|---|---|
| Public | Private | |||
| <100 employees | 0 * | 3 | 30 | 90 |
| 100-250 employees | 3 | 3 | 45 | 270 |
| >250 employees | 2 | 2 | 70 | 280 |
| Total | 5 | 7 | 640 | |
*No public companies either local government-owned or central government-owned company with employees less than 100.
Instruments
In this setting, we will develop a self-administered questionnaire, based on TB Stigma Scale and TB Stigma Assessment Handbook (see Supplement B in the Extended data 30 .) 13, 26, 35 We will validate the questionnaire’s content through an expert panel meeting consisting of experts from community medicine, psychiatry, occupational medicine or health management, the Indonesian NTP, and Ministry of Health (Directorate of Occupational Health). The content-validated questionnaire will be field-tested and finalized as also implemented for setting 1.
In-depth interview
We will also apply a qualitative approach through in-depth interviews. Using probing questions developed from a desk review, the interviews with selected key persons will: two director-level resource persons at the Ministry of Workforce, two director-level resource persons at the Ministry of Health (Occupational Health and Infection), six manager-level at six different companies, and 12 non-manager level workers from six companies (two workers per company). Those who are invited to the in-depth interview will be selected purposively according to their availability. The in-depth interview will be held via online discussion, using a structured open-ended questionnaire, and will last around 45 minutes. The questions will be finalized after obtaining quantitative results and an expert panel meeting.
Data management
Data management of the study will be performed under the responsibility of investigators. Investigators will develop an electronic-based questionnaire using REDCap® for the collection of field data and real-time monitoring of the implementation of the online surveys. For qualitative data, all in-depth interviews will be recorded electronically and stored in cloud platform with a unique password. The records are also stored in local drive for backup. The sound records will be transcribed, and all will be stored at cloud platform with unique password.
The collected data will be anonymized. There will be no name and address of the subjects. Investigators are the only persons who have access to individual anonymized data. Access to the physical and electronic data is only granted by the Principal Investigator (PI). All passwords are strong in nature and never written down nor shared.
The study database will be locked as soon as it is considered clean. Only authorized and well-documented updates to the study data are possible after database lock. The locked database is used in the final statistical analysis for study reporting. Measures will be undertaken to protect subject data handed over by the Investigator to the data management department and during inspections against disclosure to unauthorized third parties. Subject confidentiality will always be maintained.
Outcome analyses
Stigma
Stigma will be scored numerically by a four number Likert scale from strongly disagree (1) to strongly agree (4). The mean sum of scores across the questions and accompanying SD will be displayed. For validation, we will apply exploratory and confirmatory factor analysis and internal consistency analysis. A Cronbach’s Alpha of >0.7 will be considered good to excellent reliability or internally consistent. We will also check the construct validity by calculating Pearson’s correlation coefficients to compare individual scores on the Van Rie’s stigma scales with responses concerning mental health (PHQ-9). We will consider a correlation coefficient >0.3 indicated moderate to strong correlation. We hypothesize that TB-related stigma will be positively correlated with social support need and mental health. Significance level will be set at 0.05.
Mental health
We will calculate the sum value of each subject and display the score in five groups: from minimal to severe depression. However, for further inferential analysis, we will group the scores to only three categories ( Table 3).
Table 3. Interpretation of Patient Health Questionnaire-9 (PHQ-9) total score.
| Total score | Interpretation 1 | Interpretation 2 |
|---|---|---|
| 1–4 | Minimal depression | No to minimal depression |
| 5–9 | Mild depression | Mild to moderate depression |
| 10–14 | Moderate depression | |
| 15–19 | Moderately severe depression | Severe depression |
| 20–27 | Severe depression |
Need for social support
The need for social support will be scored numerically in four Likert scale from strongly disagree (1) to strongly agree (4). The mean sum of scores across the questions and accompanying standard deviation (SD) will be displayed.
Health-related Quality of Life (HRQoL)
Each dimension of the EQ-5D-5L has five-level options; from 1 for ‘no problem’ to 5 for ‘unable or extremely problem’ while the EQ-5D-3L has only three levels. Therefore, the answer will be coded as five numbers, for example, 11111 or 12345 for EQ-5D-5L and 111 or 123 for EQ-5D-3L. The codes will be converted to utility scores validated in Bahasa Indonesia 36 . Both questionnaires will be compared to see the reliability and ceiling effects with the EQ-5D-3L. Quality of life data will be displayed in mean (standard deviation, SD) and/or median (min-max) values. Ceiling will be displayed in number (n) and percentages (%).
Association between variables
We will assess the correlation between TB-related stigma, need for social support and HRQoL by calculating Pearson’s or Spearman-rank correlation, depending on their data distribution. Factors related to TB-related stigma, mental health, needs for support, and HRQoL will also be assessed. The presumptive demographic factors include age, sex, education level, economic/poverty level, and area of residence, while clinical factors include type of TB (e.g. multidrug-resistant- vs drug senstitive-TB), HIV co-infection, and phase of TB treatment. All these factors will be included as fixed factors in ANOVA (univariate analysis) and MANOVA (in multivariate analysis) to obtain the F, partial η 2 and significance values. For variables with more than two categories, we will perform complementary post-hoc analyses using Tukey’s honest significant test (HSD) when the data meet the Tukey’s assumption, or Bonferroni correction as a suitable alternative. Significance will be set at 5%. All statistical analyses will be done using SPSS 27.0.
Qualitative analysis
All in-depth interviews will be recorded after interviewees give their consent. The recordings will be then transcribed to text. Keywords found in the transcript will be coded and grouped according to the theme, using Microsoft Excel. A content analysis will be done using three steps summarized below 37 .
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a.
Summary. Given the long transcripts, we will do paraphrasing, generalisation, or abstraction to summarize the text to preserve the essential content but still reflects the original material.
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b.
Explication. The material then will be explained, clarified, and annotated by (1) defining it lexico-grammatically and (b) determining the material for explication, then followed by (c) a narrow and broad context analysis.
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c.
Structuring. We will first determine the themes for thematic analysis. This step will be done independently using multiple coders by two researchers who familiarised themselves with the data. The themes and codes will be re-examined and revised, if necessary, depending on the course of reappraisal of the material.
We will do triangulation in content analysis by comparing findings from several perspectives: patients – healthcare providers – program officers (for TB service-based population) and employees – company management – policy makers (for workplace-based population), from either qualitative or quantitative findings. The findings will be displayed in several themes, and some quotes will be provided in the narration.
Ethical considerations
CAPITA study’s protocol will be submitted to The Ethical Research Committee, The Faculty of Medicine, Universitas Indonesia and will be undertaken only after the IEC/IRB has given full written approval of the final protocol, the questionnaire, and any other written information to be provided to the subjects.
All subjects will be provided a full explanation on the nature of the study and written informed consent will be taken. All information should be delivered in Bahasa Indonesia. Because of potential COVID-19 waves, interviews can be done through either face-to-face, by phone, or online interview. Therefore, the informed consent form will be signed according to the way of the interview: written for face-to-face and recorded voice or video for phone and online interview. The respondents will authorize such access and agree to allow study team to recontact them to obtain missing or additional data, if needed. Investigators ensure that all study documents are provided in confidence and are not disclosed to any party not directly involved in the study without the investigator’s written permission.
Discussion
CAPITA Study will be the first study that captures the TB-related stigma, discrimination, and mental health problems experienced by people with TB and their health-related quality of life in several provinces in Indonesia. To date, there has been limited local evidence generated concerning risk factors and prevalence of the psychosocial consequences of TB, including stigma and mental illness, and the interventions to mitigate them. Most reports were published in the grey literature and not peer-reviewed 14 .
In addition to characterizing the psychosocial impact faced by people with TB, CAPITA Study will also explore the perception among workers regarding the stigmatisation and discrimination towards people at the workplace. There is no previous study assessing this issue in Indonesia. At the same time, people with TB often miss job opportunities or receive discrimination in the workplace, such as unfair dismissal because of repeated absenteeism, limited opportunity to promotion, avoidance, or even being fired from their job 11, 12, 38 .
With a sequential mixed method, the quantitative findings will be followed by an assessment through a qualitative approach to assess the current policy regarding TB-related stigma, discrimination, and mental illness and explore the further policy direction in health service facilities and workplaces. The qualitative approach will help enhance and check the quantitative findings by triangulation in content analysis from many perspectives: people with TB, NTP managers, TB program officers, The Ministry of Health Workforce, company managers, and employees.
Involving policy makers in the national Indonesian context since the preparation of the study is essential to influence the development of future policy or policy agenda. At the end of the study, we will invite all related stakeholders to a participatory workshop to discuss the findings and plan the next steps for zero TB stigma policy improvement. The results will be formulated in policy briefs for The Ministry of Health and The Ministry of Workforce, Republic of Indonesia, scientific articles published in peer-reviewed journals, and inputs for the WHO’s handbook of TB Stigma, if applicable. We will also hold a public webinar to disseminate the findings to the public audience. In addition, the validated tool to measure TB-related stigma will be promoted for scaling up to be implemented at the national level and used for future research in Indonesia.
This study will be implemented during the ongoing COVID-19 pandemic. Therefore, respondent recruitment, particularly for setting 1, may be challenged by new severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) waves, TB and healthcare service disruption, or lower TB case notification rates. To mitigate the negative effects of pandemic to this study, flexibility in doing interview and in-depth interview is critical. Using phone or virtual call, for example via Zoom or Microsoft Teams, is both an opportunity and a challenge 39 . The data validity and comparability collected by different mediums should be maintained through a well-prepared training for interviewers, strong monitoring, and clean data auditing.
We acknowledge the potential limitations of this study. For example, in setting 1, we will not be able to capture the psychosocial impact faced by people with TB who are not notified by the NTP and not detected, which is approximately 20% of total TB incidence in Indonesia. In setting 2, the responses to the online questionnaire depend on those who are willing to join the survey. These selection biases will limit the generalizability of the findings.
Study status
The study protocol is currently being reviewed by The Ethical Committee of Faculty of Medicine, Universitas Indonesia. The cross-cultural adaptation of the questionnaire to the Indonesian context is currently underway.
Data availability
Underlying data
No underlying data are associated with this article.
Extended data
Open Science Framework: Characterising and Addressing the Psychosocial Impact of Tuberculosis in Indonesia (CAPITA). https://doi.org/10.17605/OSF.IO/2UB9J 30 .
This project contains the following extended data:
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d1. Pedoman Lembar Informed Consent-gab af v.2.pdf
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Supplements – CAPITA.pdf (questionnaires)
Data are available under the terms of the Creative Commons Zero "No rights reserved" data waiver (CC0 1.0 Public domain dedication).
Acknowledgments
We acknowledge The Indonesian National Tuberculosis Program and The Ministry of Health, Republic of Indonesia for their support to this study.
Funding Statement
This work was supported by Wellcome [209075; to TW]; and The Royal Society of Tropical Medicine and Hygiene, UK (RSTMH) [19590206; to AF]. The views expressed in this article are those of the authors and do not necessarily reflect those of Wellcome Trust or the. The funders had no role in the design of the study; data collection, analyses, or interpretation; manuscript writing, or in the decision to publish the results.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
[version 1; peer review: 1 approved, 1 approved with reservations]
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