Project Overview

The incidence of tuberculosis increases rapidly during adolescence to peak in early adulthood in high TB transmission settings. This age group, particularly those with Multidrug Resistant tuberculosis (MDR-TB), face specific age-related challenges in accessing appropriate care. Few studies have identified adverse impact of MDR-TB treatment in adolescents, such as serious physical and neurological side effects. These create psychological distress for adolescents leading to treatment discontinuation. Two studies from South Africa and India reported delays in diagnosis, lack of follow up, and refusal to take medication as serious issues. These data and experiences highlight the high vulnerability of many adolescents and young adults (AYA) with MDR-TB and the challenges of successfully engaging them in care. Exploring the psycho-social barriers to treatment adherence and retention and identifying the most preferred psycho-social interventions for this population are critical to mitigating these barriers and improving their engagement in care.

This PEER project involved a mixed-method study with AYA with MDR-TB to investigate psycho-social barriers, health-system related barriers, and satisfaction with their current health condition. The researchers sought to identify the barriers to retention of care, identify evidence-based effective psycho-social interventions for youths through literature research, and assess the acceptability of proposed youth-friendly psycho-social interventions. The PEER project also involved a mentoring and training component focused on three female researchers involved in the project.

Final Summary of Project Activities

The team conducted six in-depth interviews and 30 semi-structured interviews with AYA with MDR-TB between April 2022 to March 2023 registered at a public MDR-TB hospital. Questions involved gathering individual-level data on psycho-social barriers such as mental stress, suicidal thoughts, feelings of stopping medicines, perceived and experienced stigma, and socio-economic burden, as well as health system-related barriers, including delayed diagnosis, drug stockout, and negative experience with healthcare providers.

The mentees involved in this project received intensive training in the fundamental principles of clinical research, acquiring proficiency in essential qualitative methodologies, development of data collection tools, ethical considerations, and interviewing skills. The mentee team members also participated in critical paper discussions, literature reviews, and abstract writing exercises. All mentees actively contributed to synthesizing the research findings and played integral roles in disseminating results through scientific forums and events. One mentee, who is now enrolled as a doctoral candidate, independently conducted qualitative analysis and contributed to drafting the study's abstract.

As part of the study, the researchers developed several policy recommendations, including integrating mental health screening in the healthcare system for this population. PEER team members presented their findings at the Union World Conference on Lung Health 2023 and at the tertiary care TB Chest Hospital at Aundh, Pune, India, in December 2023, where more than 50 key personnel from the National TB and HIV programs across the city discussed the findings and shared their insights. The researchers plan to publish their findings in a TB-related journal.