Abstract:
Background: The rollout of antiretroviral therapy in sub-Saharan Africa has brought lifesaving treatment to millions of HIVinfected
individuals. Treatment is lifelong, however, and to continue to benefit, patients must remain in care. Despite this,
systematic investigations of retention have repeatedly documented high rates of loss to follow-up from HIV treatment
programs. This paper introduces an explanation for missed clinic visits and subsequent disengagement among patients
enrolled in HIV treatment and care programs in Africa.
Methods and Findings: Eight-hundred-ninety patients enrolled in HIV treatment programs in Jos, Nigeria; Dar es Salaam,
Tanzania; and Mbarara, Uganda who had extended absences from care were tracked for qualitative research interviews.
Two-hundred-eighty-seven were located, and 91 took part in the study. Interview data were inductively analyzed to identify
reasons for missed visits and to assemble them into a broader explanation of how missed visits may develop into
disengagement. Findings reveal unintentional and intentional reasons for missing, along with reluctance to return to care
following an absence. Disengagement is interpreted as a process through which missed visits and ensuing reluctance to
return over time erode patients’ subjective sense of connectedness to care.
Conclusions: Missed visits are inevitable over a lifelong course of HIV care. Efforts to prevent missed clinic visits combined
with moves to minimize barriers to re-entry into care are more likely than either approach alone to keep missed visits from
turning into long-term disengagement.
