Uncovering the hidden costs of free tuberculosis care: economic narratives of informal treatment supporters in rural Ghana.

backgroundTuberculosis (TB) control strategies in Ghana emphasize free diagnosis and treatment, often overlooking the economic burden borne by informal treatment supporters typically family members, friends or community members who provide day-to-day care remains largely invisible in health policy discourse. These supporters play a crucial, yet underrecognized role in TB management, especially in rural areas where health system limitations intensify reliance on unpaid informal treatment supporters.

objectivesThis study explores the direct and indirect costs incurred by informal TB treatment supporters in rural Ghana, aiming to uncover the economic impact of caregiving in a context where TB care is officially free.

methodsA qualitative narrative inquiry design was employed involving 60 purposively selected treatment supporters across three districts in the Bono Region of Ghana. Participants were selected based on their support role to TB patients currently or recently on treatment. Data were collected through in-depth interviews, transcribed verbatim, and analysed thematically using NVivo 12 software. Five (5) major themes emerged from the analysis these includes; Direct costs of treatment support (these include out-of-pocket on transport to the health facility, food and communication not covered by the TB program), Income loss due to travel and waiting time at health facility, Income loss due to time away from work (absenteeism from farming, trading and other wage labour), Economic sacrifices and structural neglect of informal treatment supporters.

resultsAlthough TB treatment is officially free in Ghana, informal treatment supporters incur substantial hidden costs. These include direct out-of-pocket expenses for transport, food, and communication, and indirect costs such as lost income and disrupted livelihoods. Supporters adopt coping strategies like borrowing, asset sales, and meal reduction, deepening household vulnerability. Many experiences emotional distress, social stigma, and receive no institutional recognition or support, despite being central to patient adherence and care continuity.

conclusionDespite free TB care, informal supporters in rural Ghana face significant hidden economic and emotional burdens. These unrecognized costs strain households and threaten the sustainability of community-based care. Policy reforms should acknowledge their role and extend social protection to reduce their financial vulnerability.