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A new study by York researchers reveals how tuberculosis (TB) can disrupt work, relationships and daily life, leaving lasting effects even after treatment ends.

“For many people, the experience of TB is debilitating physically, emotionally, socially and financially,” says Nancy Bedingfield, a postdoctoral research fellow at the Dahdaleh Institute for Global Health Research, who works with Associate Professor Amrita Daftary at the School of Global Health. The way these effects are typically studied is through a unifying framework. “Quality of life (QoL) is a single concept capable of capturing these wide-ranging impacts,” she explains.

To measure QoL, researchers often use an internationally recognized questionnaire called the World Health Organization Quality of Life – BREF (WHOQOL-BREF). But while working on a larger study called MISSED OUTCOMES, which explores the causes and effects of high TB rates in South Africa’s Eastern Cape province, Bedingfield realized that standardized measures might miss something vital.

“Standardized questionnaires yield very valuable information, but cannot capture the cultural and individual complexity that really matter when it comes to an outcome as personal as quality of life,” she says. “We can’t truly understand the impacts of TB unless we look at the experience holistically. We need a nuanced understanding in order to do that.”

To address this, Bedingfield pursued a stand-alone study within MISSED OUTCOMES which has now been published in . The study was co-designed with Andrew Medina-Marino’s team at the Desmond Tutu HIV Foundation, University of Cape Town, and engaged a recent graduate of York’s School of Global Health, Mahilet Girma.

The team conducted open-ended interviews with individuals at different stages of treatment, giving participants space to share their own experiences of how TB affects their daily lives.

Participants described how TB didn't just damage their lungs, but disrupted routines, limited their independence and reshaped how they saw themselves and their roles within families and communities. Many described a decline leading up to a diagnosis, as unmanaged symptoms made work and everyday tasks increasingly difficult. Treatment was not an automatic remedy. In fact, early treatment was often the most challenging stage, marked by medication side effects, fatigue and mounting financial strain. Even after treatment ended, many participants continued to experience those challenges.

Participants judged their well-being on what mattered most to them: the ability to work, support family or pursue personal goals. Physical recovery wasn’t enough; without income or social assistance, many still felt the quality of their daily lives was poor. Through those personal perspectives, the study will add nuance to how well-being is understood in TB patients and highlight gaps in social and economic services, pointing to the systemic changes needed to improve outcomes.

“People experiencing TB, especially in low- and middle-income countries such as South Africa, require financial assistance and personalized counselling to achieve a fulfilling quality of life and recover from the setbacks imposed by TB,” says Bedingfield.

The study recommends more support during early treatment, when well-being is often at its lowest, as well as after treatment ends when people are considered "cured." This could include income assistance, counselling, education and programs to help people return to work.

Recovery from TB is about eliminating infection as much as it is about restoring stability, independence and dignity – something medicine alone cannot achieve.

“We hope our study comes to the attention of international and national decision-makers who can increase prioritization and funding for social protection programs – such as cash transfers, nutrition programs and personalized counselling – for people affected by TB,” Bedingfield adds. “The needs of people affected by TB are great, but the resources available for person-centred supports are lacking.”

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