Hopes interrupted: accessing and experiences of antiretroviral therapy in South Africa

OBJECTIVES: Using the example of South Africa, this study aimed to examine and obtain a better understanding of the experiences and challenges of urban and rural patients on antiretroviral therapy (ART) in accessing this complex treatment in a resource-limited setting. METHODS: Following a narrative approach, in-depth interviews were conducted with 20 patients successfully and unsuccessfully (ie, with interruptions) receiving ART in urban Johannesburg and rural Bushbuckridge, using a detailed interview guide structured to illuminate interviewees' life circumstances and contextualise illness and treatment trajectories. Participants were interviewed by trained fieldworkers in their local languages. The translated and transcribed interviews were coded by several team members. Codes were cross-examined and showed good congruence. RESULTS: All interviewees emphasised the positive aspects of receiving ART, the lifeline and hope it provided by improving health, increasing their ability to live actively and reducing visible signs of (stigmatised) illness. Important factors supporting continuing adherence included social and economic support by individuals, role models and networks as well as positive experiences within the healthcare system and of the treatment itself. The main challenges were linked to patients' difficult life circumstances, especially those related to poverty (eg, transport and food costs) and health system constraints, including perceived lack of compassion and flexibility by healthcare workers. CONCLUSIONS: While there are many challenges for the sustainability of ART on an individual and health system level, this study emphasised the need for a patient-centric focus to continue to provide and increase the number of HIV-positive people receiving this lifeline, receiving hope.