Bernays S, Rhodes T. Experiencing uncertain HIV treatment delivery in a transitional setting: qualitative study.

Bernays S, Rhodes T. Experiencing uncertain HIV treatment delivery in a transitional setting: qualitative study.

Advances in HIV treatment availability mean that the promise of highly active anti-retroviral treatment to turn HIV into a manageable chronic illness is becoming a reality for millions. However the mutability of the virus means that treatment adherence demands are high, and the supply of these life-saving treatments needs to be constant. The onus is generally placed on the individual to adhere, and there is little focus in research or policy on the state’s adherence to delivering treatment consistently. Bernays and colleagues undertook in-depth qualitative interviews to explore the narratives of HIV treatment experience among 41 people living with HIV and 18 HIV treatment service providers in Serbia and Montenegro, a transitional setting in which state delivered and funded HIV treatment is inconsistently available. Data were analysed inductively and thematically. Treatment shortages were common so the delivery of appropriate HIV treatment was not continuous. Access to reliable treatment and supply forecast information was weak and uneven. The insecure treatment situation fostered significant anxiety amongst people living with HIV. In the absence of reliable and sustained treatment access, information, and support, people living with HIV absorb the anxieties of system failures. This uncertainty led to an individuation of “treatment”. People living with HIV adopted rationing strategies to mediate their anxiety, energy and hope. This predominately resulted in varying forms of disengagement and neglect for social change. It is likely that this has significant negative implications for the promotion of HIV treatment advocacy and anti-stigma efforts.

Editors’ note: Adherence literature to date has focused primarily on patient adherence to treatment regimens rather than on the social and psychological effects of involuntary treatment interruptions. Fragile treatment delivery undermines the quality of life and capacity of people living with HIV to manage it as a manageable, chronic illness. Although some people in this study reduced their anxiety by fostering networks and resources to gain access to information and treatment, a form of social capital to generate security, others withdrew, trusting no one but their treatment provider and becoming less likely to disclose to others. This research highlights the clear need for a social science of scale-up