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Understanding Disengagement from HIV Care in Sub-Saharan Africa

Investigators interviewed patients in three sub-Saharan countries who had extended absences from care to develop an explanatory model of why missing clinic visits often leads to long-term disengagement from care.

The delivery of antiretroviral therapy to people living with HIV in resource-limited nations through programs such as the President's Emergency Plan for AIDS Relief and the Global Fund is considered to be one of the greatest public health achievements of the past decade. Many have argued that the only way to achieve an "AIDS-free generation" is to capitalize on the significant investment in life-saving treatment delivery in resource-limited settings and focus on engagement in care through sociobehavioral and implementation-science research. In a recent qualitative study conducted from January 2010 through March 2012 in Tanzania, Uganda, and Nigeria, researchers sought to understand why HIV-infected individuals in sub-Saharan Africa disengage from care.

The researchers used tracking lists from clinics in the three countries to identify adults who were enrolled in care, had missed a regularly scheduled follow-up appointment, and had not subsequently returned for at least 3 months. Lists from three such clinics yielded a total of 890 patients, of whom 287 were located. Ninety-one of these patients agreed to be interviewed about their experiences in the clinic and with tracking, as well as their reasons for missed appointments.

Initial reasons for missing appointments included competing demands on patients' time, unexpected events preventing patients from coming to the clinic, encounters with violence, and dissatisfaction with care. These reasons — particularly when compounded — can ultimately lead to a sense of shame, apprehension, and reluctance to return for treatment.

Comment: This study provides an important framework for providers engaged in patient care in resource-limited settings. It moves beyond the model of "lost to follow-up" to consider the dynamic and often incremental processes that can work together to keep people living with HIV out of care. In so doing, it provides a more nuanced picture of why many individuals in such settings disengage from care. Ultimately, providers need to recognize the likelihood that absences will occur over a lifetime of treatment — and to employ a model of harm reduction both by preventing missed clinic visits and by moving beyond an environment of shame and judgment for those who re-enter care.

— Ingrid T. Katz, MD, MHS

Dr. Katz is an Instructor at Harvard Medical School and a physician-researcher at Brigham and Women's Hospital in Boston. She declares no conflicts of interest.

Published in Journal Watch HIV/AIDS Clinical Care March 11, 2013

Citation(s):

Ware NC et al. Toward an understanding of disengagement from HIV treatment and care in sub-Saharan Africa: A qualitative study. PLoS Med 2013 Jan; 10:e1001369. (http://dx.doi.org/10.1371/journal.pmed.1001369)

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