Psychosocial challenges of drug-resistant tuberculosis: A qualitative study in Deoghar, Eastern India

Methods

This exploratory qualitative descriptive study was carried over two months (November–December 2023) in the department of Pulmonary Medicine, All India Institute of Medical Sciences, Deoghar, Jharkhand, India after obtaining the ethical clearance from the Institutional Ethics Committee. Written informed consent was obtained, with verbal consent reconfirmed before recording.

Using criterion sampling, adult participants (>18 yr) with drug-resistant tuberculosis (DR-TB) who had successfully completed treatment without interruptions of more than two consecutive days were recruited. Of the 24 patients initially screened, 20 were enrolled after excluding those with language barriers, lack of consent for audio recording, or withdrawal from participation. Data collection proceeded until saturation was reached, defined a priori as the point at which no new themes or subthemes emerged across three consecutive interviews. This criterion guided the final sample size and ensured adequate depth and variation in capturing participants’ psychosocial experiences.

Results

Figure 1 depicts the patient recruitment, data collection and analysis.

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Fig. 1.

Flow chart of the patient recruitment and data collection.

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Theme 2

Physical and mental health impact of treatment: Most participants described significant drug-related side effects—vomiting, sleeplessness, bowel changes, and injection-site pain—that negatively influenced both physical and psychological well-being. These effects fostered hopelessness and suicidal thoughts. Figure 2 shows the ill effects on physical and mental health arising due to medication.

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Fig. 2.

Showing ill effects on physical and mental health arising due to medication. The figure is generated using Napkin AI version beta 0.12.2.

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‘I vomited after every meal during the first 9 months… I thought I would die soon eating these tablets.’ (40 yr, Male)

‘I used to feel I am getting punished by God… my child used to run away seeing me vomit all the time.’ (43 yr, Male)

Discussion

The findings of this study provide critical insights into the multifaceted psychosocial challenges faced by patients undergoing treatment for drug-resistant tuberculosis (DR-TB). Beyond the biomedical burden, patients reported profound disruptions to emotional well-being, family life, social relationships, and livelihood, highlighting the need to consider DR-TB as both a medical and psychosocial crisis requiring holistic interventions.

A major disruption identified was patients’ reduced capacity to meet social and familial obligations, which they found particularly distressing. Similar observations were reported by Hatherall et al¹⁶ who emphasised the importance of timely and sensitive communication when disclosing a DR-TB diagnosis. These findings underscore that DR-TB affects not only individual health but also social identity and familial roles, necessitating counselling strategies that address role loss and facilitate social reintegration, alongside treatment adherence.

Participants described a wide range of negative experiences and drug-related side effects. These observations mirror previous reports of hopelessness and scepticism about recovery by Aziz et al.¹⁷ Furthermore, psychosocial burdens such as concerns about the future, fear of death, fatalistic attitudes, social stigma, and self-stigma compounded the emotional distress associated with DR-TB.

Stigma and social isolation emerged as central themes; these patterns are consistent with prior findings: Mukerji et al¹⁸ documented non-disclosure, guilt, and suicidal ideation among women with TB, while Redwood et al¹⁹ highlighted isolation as a coping strategy. Interpreted through stigma theory, these experiences illustrate how labelling, stereotyping, and social separation exacerbate psychological distress. Women appeared particularly vulnerable to these effects, with high levels of depression, anxiety, and insomnia reported.

The Health Belief Model provides an additional lens to interpret these experiences: perceptions of disease severity, prolonged treatment, and side effects eroded confidence in recovery and reduced motivation to adhere to treatment. Patients often interpreted weight loss and side effects as signs of worsening illness, reflecting gaps in counselling and communication regarding positive health progress during treatment.²⁰

Financial constraints were another prominent theme. Although DR-TB treatment and hospitalisation are provided free under the National Tuberculosis Elimination Programme (NTEP), indirect costs—including travel, lost wages, and nutritional support—imposed considerable hardship, corroborating earlier evidence on the catastrophic economic impact of DR-TB in India.^21,22 From a social determinant of health perspective, structural inequities such as poverty, unstable employment, and limited social protection amplify treatment-related distress and underscore the need for systemic policy interventions.

Evidence suggests that psychosocial support interventions can improve adherence. For instance, structured group and individual counselling in Kazakhstan significantly enhanced adherence and reduced default rates among DR-TB patients.²³ An Indian study emphasised repeated counselling for both patients and families to bridge knowledge gaps and sustain motivation.²⁴ Our findings strongly support integrating psychosocial and economic support within the NTEP framework, highlighting the potential of holistic care models to enhance adherence and improve treatment outcomes.

This study is subject to certain limitations. It was conducted at a single centre with a relatively small sample size, which limits generalisability. Patients who had defaulted or dropped out of treatment were not included, potentially underestimating the most severe psychosocial challenges faced by this group. Social desirability bias may have also influenced responses, with participants less willing to disclose sensitive experiences such as suicidal ideation or strained family dynamics.

To conclude, DR-TB patients face profound psychosocial burdens, distress, stigma, disrupted family roles, and financial hardship that compromise adherence and quality of life. NTEP must adopt a holistic, patient-centred approach with psychosocial, counselling, peer, and financial support.