Toward an Understanding of Disengagement from HIV Treatment and Care in Sub-Saharan Africa: A Qualitative Study

Norma Ware and colleagues conducted a large qualitative study among patients in HIV treatment programs in sub-Saharan Africa to investigate reasons for missed visits and provide an explanation for disengagement from care. Background: The rollout of antiretroviral therapy in sub-Saharan Africa has brought lifesaving treatment to millions of HIV-infected 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. Background: The human immunodeficiency virus (HIV) infects cells of the immune system, destroying or impairing their function. As the infection progresses, the immune system becomes weaker, and the affected person becomes more susceptible to life-threatening infections. Over the past three decades, 25 million people have died from HIV, and according to the World Health Organization, in 2011, there were roughly 34.2 million people living with HIV, over 60% of whom lived in sub-Saharan Africa. Although HIV cannot be cured, the virus can be suppressed by combination antiretroviral therapy (ART) consisting of three or more antiretroviral drugs. ART controls viral replication and strengthens the immune system, allowing the affected person to fight off infections. With ART, HIV can be managed as a chronic disease: people living with HIV can live healthy lives as long as they take antiretroviral drugs regularly for the rest of their lives. Why Was This Study Done?: Unfortunately, poor retention in HIV programs is a huge problem: a large proportion—30%–60% in some settings in sub-Saharan Africa—of people starting ART, are lost to follow-up and stop taking treatment. Few studies have looked in depth at the reasons why people with HIV in sub-Saharan Africa miss clinic appointments or even stop coming altogether. So in this study in Tanzania, Uganda, and Nigeria, the researchers did a qualitative analysis from the patients' perspective on the reasons for missing clinic visits. Qualitative research can use information-gathering techniques, such as open-ended interviews, to develop an in-depth understanding of human behavior and the reasons behind such behavior. What Did the Researchers Do and Find?: The researchers indentified people to interview by using “tracking lists” from HIV/AIDS care clinics in the three countries—patient tracking by clinical trackers is increasingly used as a way to contact patients who have missed clinic appointments. The researchers included people in the study who had been tracked and contacted by clinic trackers, had been absent from the clinic for three months or more, and gave consent to be re-contacted by the researchers. The researchers interviewed participants, using their local language, on several topics, including their experiences of care at the clinic and of tracking, and the circumstances of missed appointments. The detailed accounts were transcribed, and then the researchers categorized the reasons for missing appointments into intentional and unintentional reasons. What Do These Findings Mean?: Absences from care will be inevitable over a lifetime course of treatment for HIV/AIDS. These findings indicate that absences may be unintentional as well as intentional, and that the reasons are complex and can change over time. Initial reasons for missing may disappear, leaving patients free, but reluctant, to return to care. Reasons for reluctance include shame at having been absent and the anticipation of a negative response to return from care providers. Patient education for ART initiation in sub-Saharan Africa often includes stern warnings about the lifelong commitment beginning ART represents. Paradoxically, educational efforts intended to maximize the benefits of ART for patients may be driving some away from care. Therefore, efforts to prevent missed clinic visits coupled with strategies to minimize any obstacles to coming back to care are necessary to keep patients' missed visits from turning into long-term disengagement from treatment. Additional Information: Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001369.