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Background  Individuals who test positive for active tuberculosis (TB) but do not initiate treatment present a challenge to TB programmes because they contribute to ongoing transmission within communities. To better understand why individuals do not initiate treatment, or are adherent after initiating treatment, South African respondents were approached to obtain insights as to which factors enabled and inhibited the treatment process.    Methods  This qualitative work was nested in a larger study investigating initial loss to follow-up (LTFU) amongst new smear positive TB patients across five provinces of South Africa. In-depth interviews were done with 41 adherent and initial LTFU respondents.    Results  Key issues contributing to initial LTFU appeared to be a poor knowledge, or low awareness of TB treatment; stigma around TB including its connection to HIV; immediate problems in the respondents’ lives particularly poverty, lack of access to transport and the need to continue working; and problems in the healthcare facilities including under resourced facilities, poor functioning health systems and negative staff attitudes. In contrast the reasons given for being adherent related to the level of illness, support received at home and healthcare facilities, a belief in the health system and positive experiences in the health service including positive attitudes from staff.    Conclusions  Key changes need to be made to the healthcare system to enable patients to initiate treatment and remain adherent, but the six month regimen of daily observed treatment presents real practical and personal challenges to patients. Alternative strategies to DOTS at facility level should be investigated to bring services closer to communities to encourage patients to access care, initiate and adhere to treatment.

It’s complicated: why do tuberculosis patients not initiate or stay adherent to treatment? A qualitative study from South Africa