Why did some people in Zambia disengage from HIV care despite free treatment?

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Despite access to free antiretroviral therapy (ART), many HIV-positive Zambians disengage from HIV care. Researchers sought to understand how health system “hardware” (tangible components) and “software” (work practices and behaviour) influenced decisions to disengage among patients lost to follow-up who were traced by a larger study of their current health status.

The researchers purposively selected 12 facilities across four provinces. They conducted in-depth interviews covering 69 patients in four categories: engaged in HIV care, disengaged from care, transferred to another facility, and, if deceased, their next of kin. They also held 24 focus group discussions with 158 lay and professional healthcare workers. Interview and discussion data were triangulated with two consecutive days of observation at each facility. The team conducted iterative multilevel analysis using inductive and deductive reasoning.

Hardware factors influencing disengagement included inadequate infrastructure to protect privacy, the time and money required to travel to facilities, and chronic understaffing that increased waiting times. Software factors involving healthcare workers’ practices and clinical decisions included delayed opening times, file mismanagement, drug rationing and inflexible visit schedules; these increased waiting times and the number of clinic visits and frustrated access to care. Patients viewed healthcare workers as mentors and trusted sources of information, but many also described them as rude, late, careless with details and confidentiality, and favouring relatives. Nevertheless, unlike previously reported, many patients preferred ART over alternative treatments such as traditional medicine because they perceived it as effective, it was free, and it came with clinical monitoring.

The findings demonstrate the dynamic effect of hardware and software factors on decisions to disengage. The researchers suggested improving physical resources and the structure of HIV services, as well as preservice and in-service training and mentorship for healthcare workers and management, to encourage patient-centred care and flexibility for patients’ varying needs and circumstances.