“Once you get TB, life changes”: post-tuberculosis experiences and care needs in East Africa

Abstract

Introduction: Recognition of tuberculosis (TB) sequelae is growing. Evidence regarding post-TB experiences and care needs may inform care models. Methods: The TB Sentinel Research Network of the International Epidemiology Databases to Evaluate AIDS is a global prospective study of people aged ≥15 with pulmonary TB. In Eldoret, Kenya, and Mbarara, Uganda, we conducted in-depth interviews with a purposive sample of individuals treated for TB and multi-disciplinary healthcare workers (HCWs) providing TB care, using a semi-structured guide. We conducted a reflexive thematic analysis. Results: In interviews with 25 HCWs and 61 individuals treated for TB, participants described trajectories of TB illness and recovery, and some persistent challenges after TB treatment across physical, economic, social, and mental health domains of wellbeing. Experiences were marked by stigma and isolation. Physical illness exacerbated economic vulnerability, which compromised physical health and presented barriers to care. There was a lack of care access and need for person-centered post-TB care. Care needs included addressing potential TB recurrence, lung health impairment, psychosocial, nutritional, and economic challenges. Conclusions: Post-TB experiences are marked by persistent symptoms, economic vulnerability, stigma, and psychosocial challenges. These experiences are generally neglected in the current care paradigm, underscoring needs for accessible, person-centered post-TB care models.