Experiences of tuberculosis survivors in North India through qualitative phenomenology

Tuberculosis (TB) remains a significant public health challenge in India, with complex social, economic, and psychological factors influencing patient outcomes. While the DOTS (Directly Observed Treatment, Short-course) strategy has improved treatment adherence, challenges persist, particularly around stigma, logistical barriers, and health system navigation. This qualitative study aimed to explore the lived experiences, perceptions, and stigma associated with TB treatment among patients who completed at least six months of therapy under the DOTS regimen at a tertiary care centre in North India. A phenomenological approach was used to conduct in-depth interviews with 17 drug-sensitive TB patients registered in the second quarter of 2024 on the Nikshay Portal. Participants were selected until thematic saturation was achieved. Data were collected using a pretested interview guide, audio-recorded, transcribed, translated, and analysed thematically through manual coding. Ten key themes emerged, including delayed diagnosis, fragmented care pathways, financial burdens despite free treatment, drug stock-outs, logistical challenges of DOTS adherence, inadequate counselling, stigma, gender-specific caregiving conflicts, employment vs. treatment tension, and trust in medication driven by fear of relapse. Despite limited knowledge and psychosocial strain, many participants demonstrated strong adherence, motivated by social support and concern over MDR-TB. The study highlights the need for a more patient-centred TB care model that addresses not only clinical management but also the psychosocial, economic, and gendered realities of patients. Tailored counselling, stigma reduction, nutritional support, and flexible treatment delivery can significantly enhance adherence and treatment outcomes.