Experiences and needs of patients with MDR/XDR-TB: a qualitative study among Saharia tribe in Madhya Pradesh, Central India

Background Drug-resistant tuberculosis (DR-TB) continues to be a major public health threat posing a critical challenge to TB treatment and control worldwide. The present study was conducted among patients with DR-TB of the Saharia tribe residing in Madhya Pradesh state of Central India to document their experiences and needs, and to identify gaps for treatment adherence as this population is known to be poor because of migration and other factors.Methods We conducted 16 in-depth interviews on purposively selected patients with DR-TB among the Saharia tribe using a predesigned open-ended in-depth interview guide, which included questions on domains like general physical health, diagnosis, treatment adherence, side-effects of drugs and experience related to the health facility. Out of these interviews, various subthemes were extracted. The obtained qualitative data were subjected to thematic analysis.Results The study helped to understand the experiences and needs of the patients with DR-TB in various stages from diagnosis to treatment. Also, there was the impact of factors like lack of education and awareness, poor living conditions and lack of healthcare facilities on predominance of the disease in the community. Poor access to a healthcare facility, high pill burden and related side-effects, longer duration of treatment, financial burden, misbeliefs and misconceptions were prominent issues posing a challenge to treatment adherence. The narratives pointed out their struggle at every stage be it with diagnosis, treatment initiation or treatment adherence.Conclusion It is paramount to address the needs and experiences of patients with DR-TB to develop a patient-centric and context-specific approach conducive to the sociocultural set-up of tribal people. This will scale down the attrition rate of tribal patients while adhering to the complete treatment process and reducing the high burden of TB among the Saharia community. In addition, tribal patients should be counselled at regular intervals to increase their confidence in the treatment