“I live with pain, it cannot go away”

Lived experiences of childhood and adolescent pulmonary tuberculosis survivors — a qualitative study

Bibliographic Data

ID19592750
AuthorsEsin Nkereuwem (0000-0001-9606-9069, London School of Hygiene & Tropical Medicine, corresponding author), Oluwatosin Nkereuwem (0000-0001-6194-6228, MRC Unit the Gambia, corresponding author), Alpha Omar Jallow (MRC Unit the Gambia, corresponding author), James Owolabi, James I Owolabi (0000-0003-1372-203X, Bowen University, corresponding author), Assan Gibba (MRC Unit the Gambia, corresponding author), Fatoumatta S Jawara (University of The Gambia, corresponding author), Zainab Manneh (University of The Gambia, corresponding author), Alex Opoku (0000-0002-5973-512X, University of The Gambia, corresponding author), Virginia Bond (0000-0002-6815-4239, University of Zambia, corresponding author), Toyin Togun (0000-0002-8477-4462, London School of Hygiene & Tropical Medicine, corresponding author), Beate Kampmann (0000-0002-6546-4709, London School of Hygiene & Tropical Medicine, corresponding author)
EditorsFerdinand C Mukumbang (0000-0003-1441-2172)
Year2025
Volume5
Issue12
Pagese0005549
Publication date2025-12-04
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenuePLOS Global Public Health (JOURNAL)
Journal identifiersISSN: 2767-3375 • E-ISSN: 2767-3375
PublisherPublic Library of Science (PLoS) (PUBLISHER)
DOI10.1371/journal.pgph.0005549
PMID41343572
OpenAlexW4417004220
LanguageEN
References cited36

Childhood and adolescent tuberculosis (TB) survivors often face ongoing challenges even after completing their treatment. While the biomedical aspects of TB recovery are well studied, there is still limited understanding of how young survivors cope with the long-term impact of TB on their daily lives, development, and aspirations. Guided by an illness-narrative and phenomenological perspective, this qualitative study explored the lived experiences of children and adolescents who had completed treatment for pulmonary TB in The Gambia. Using a phenomenological approach, we purposively selected 33 participants from a larger longitudinal cohort study. Data were collected through participatory workshops that incorporated art-based methods and semi-structured in-depth interviews. Thematic analysis was used to identify patterns in participants’ post-treatment experiences. Four main themes emerged: (1) persistent physical health challenges, such as fatigue and chest pain; (2) psychosocial difficulties, including stigma, fear of recurrence, and social withdrawal; (3) educational disruption and academic setbacks; and (4) evolving career aspirations, shaped by both limitations and newfound motivation. Participants’ experiences varied by age and gender, with younger children relying on caregiver interpretations and older adolescents articulating complex emotional and identity-related reflections. Gender norms influenced the types of responsibilities and social roles participants attempted to resume. The findings highlight the multifaceted and long-term impact of TB on young survivors. Recovery was experienced as a continuum from illness to post-treatment life, requiring rehabilitation-oriented support that integrates psychosocial counselling, school re-entry, and community-based stigma reduction. Integrating such support into post-TB care and public health programming is essential to improving outcomes for paediatric TB survivors

Health care · Interpretative phenomenological analysis · Lived experience · Psychosocial · Public health · Qualitative research · Social support · Thematic analysis · Diagnosis and treatment of tuberculosis · Infectious Diseases and Tuberculosis · Tuberculosis Research and Epidemiology