Fear, Finances and Bureaucracy Shape TB Screening for Diabetic Patients in Indonesia

People living with diabetes face a silent double threat: their weakened metabolic state makes them roughly two to three times more likely to develop active tuberculosis than the general population, yet the infection can smoulder in their lungs without obvious symptoms. In Indonesia, home to one of the world’s largest burdens of both diseases, health authorities have tried to close this gap by embedding chest X-ray screening into routine diabetes care. A new qualitative study published in BMC Infectious Diseases now reveals, in patients’ own words, why that well-intentioned programme succeeds for some and stalls for others.

The research, led by Lintang Dian Saraswati of Queensland University of Technology and Diponegoro University, together with colleagues in Australia and Indonesia, focused on the Collaborative Framework for the Care and Control of Tuberculosis and Diabetes, a strategy Indonesia adopted in 2015. Detailed standard operating procedures followed in 2021, specifying that people with diabetes should receive chest X-ray screening for tuberculosis as part of their regular care. Yet little was known about how the patients themselves experience this screening, and that gap is precisely what the team set out to fill.

Between August and November 2023, the researchers conducted three focus group discussions involving eighteen participants and two in-depth interviews in Semarang City and Klaten District in Central Java. Participants were recruited purposively from both hospital and non-hospital settings, capturing perspectives from patients navigating different tiers of the Indonesian health system. Semi-structured guides with open-ended questions allowed respondents to describe their journeys through screening in their own terms, from the first referral slip to the moment the X-ray image was taken.

To make sense of the transcripts, the team applied a hybrid deductive-inductive thematic analysis anchored in the Health Belief Model, a classic psychological framework that explains health behaviour through perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action and self-efficacy. This approach let the researchers test whether the model’s constructs emerged in patients’ accounts while remaining open to themes the framework did not predict. The result is a layered map of the psychological and practical terrain a diabetic patient must cross before an X-ray actually happens.

The study’s central finding is that personal health beliefs and interpersonal support are the engine of participation. Patients who understood that diabetes silently raises their tuberculosis risk, and who felt encouraged by family members or trusted health workers, were far more willing to undergo screening. Cues to action, such as a nurse’s reminder or a relative’s insistence, often tipped the balance toward attendance. In the language of the Health Belief Model, perceived susceptibility and perceived benefit had to be activated by social reinforcement before they translated into behaviour.

Against those facilitators stood a cluster of structural barriers that no amount of personal motivation could easily overcome. Many participants had limited awareness of tuberculosis symptoms and, crucially, of the biological link between the two diseases, meaning they saw no reason to be screened when they felt well. Fear of nosocomial infection, the worry that visiting a clinic or hospital to prevent one disease might expose them to another, emerged as a particularly potent deterrent in the aftermath of a pandemic that made waiting rooms feel hazardous. Logistical challenges, including travel to facilities and time away from work, compounded the reluctance.

Financial concerns formed a second axis of inequity, but in a way that surprised the researchers. Indonesia’s Social Security Agency on Health, known as BPJS, covers the cost of screening for enrolled patients, dramatically reducing direct out-of-pocket expenditure. Yet participants described administrative and referral-related burdens that consumed time and patience: paperwork, queues, and the requirement to move through a hierarchy of first-level facilities before reaching secondary care. Paradoxically, the two self-funded participants in the study reported greater flexibility in accessing services, hopping directly to convenient providers, although the authors caution that these accounts should be interpreted as illustrative rather than representative, given the tiny number of such respondents.

The technical logic behind the programme is sound. Chest radiography can detect pulmonary tuberculosis in people who produce no sputum and report no cough, which is exactly the profile of many diabetic patients whose immune suppression blunts the classic symptoms of the disease. Systematic screening of this high-risk group is a cornerstone of the World Health Organization’s framework for collaborative tuberculosis-diabetes care, because every case caught early interrupts a transmission chain and prevents the catastrophic costs of late diagnosis. Indonesia’s 2021 standard operating procedure was designed to make such screening routine rather than opportunistic, embedding it in the chronic-care visits that diabetic patients already attend.

What the new study demonstrates is that a technically elegant procedure lives or dies at the level of human experience. A patient who fears the clinic, cannot decode the referral system, or does not grasp why an asymptomatic person needs a lung image will simply not arrive, no matter how sophisticated the radiography equipment waiting for them. The authors argue that health systems should therefore launch targeted educational campaigns that address two specific gaps: the risk posed by asymptomatic tuberculosis in diabetic patients, and the exaggerated fear of catching infection inside health facilities. They further recommend streamlining bureaucratic referral processes so that coverage on paper translates into equitable access in practice.

The findings carry weight far beyond Central Java. The twin epidemics of tuberculosis and diabetes intersect across South Asia, Southeast Asia and sub-Saharan Africa, and collaborative screening programmes are being rolled out in many of the same high-burden settings. By grounding programme evaluation in patients’ perspectives rather than administrative statistics, the study offers a template for implementation science: identify the beliefs that motivate, the fears that paralyse, and the paperwork that exhausts, then redesign the pathway around them. For Indonesia’s national programme, the message is clear. The X-ray machines are in place and the insurance coverage exists; the remaining task is to make the journey to the screening table feel safe, understandable and worth every patient’s time.

Subject of Research: Patient perspectives on chest X-ray tuberculosis screening within Indonesia's collaborative tuberculosis-diabetes programme

Article Title: Barrier and facilitator for chest X-ray tuberculosis-diabetes mellitus (CXR TB-DM) programme from patient’s perspective: a qualitative study

Article References: Saraswati, L. D., Pardosi, J. F., Widjanarko, B., & Gatton, M. L. (2026). Barrier and facilitator for chest X-ray tuberculosis-diabetes mellitus (CXR TB-DM) programme from patient’s perspective: a qualitative study. BMC Infectious Diseases. https://doi.org/10.1186/s12879-026-14427-8

Image Credits: AI Generated

DOI: 10.1186/s12879-026-14427-8

Keywords: tuberculosis, diabetes mellitus, chest X-ray screening, Indonesia, health belief model, qualitative research, BPJS, nosocomial infection, health systems, patient barriers, Central Java, public health