“I live with pain, it cannot go away”: Lived experiences of childhood and adolescent pulmonary tuberculosis survivors — a qualitative study

Résumé

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.

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