The biopolitics of engagement and the HIV cascade of care: a synthesis of the literature on patient citizenship and antiretroviral therapy

Abstract

The ‘cascade of care’ construct is increasingly used in public health to map the trajectory of local HIV epidemics and of different HIV populations. The notion of ‘patient engagement’ is key to the progress of people living with HIV through the various ‘steps’ of the cascade as currently conceptualised. The public health literature on the definition, measurement and interpretation of cascade of care frameworks is growing in parallel with critical social science literature analysing patient engagement through the lenses of ‘patient citizenship’ theories. In this paper, we review qualitative literature on HIV treatment, adherence to antiretroviral therapy and care engagement that draws upon the interlinked concepts of therapeutic and biological citizenship. We aim to offer a critique of the cascade of care construct using empirical data from research studies published since 2005 that were influenced by these two concepts. In so doing, the paper places public health literature on the cascade of care in dialogue with in-depth qualitative and ethnographic approaches, to unpack the understandings and processes shaping patient engagement in HIV treatment and care in different settings. The paper also examines the contributions and limitations of the concepts of biological and therapeutic citizenship as argued by a number of scholars here reviewed.

Keywords:

• HIV
• engagement
• adherence
• cascade of care
• citizenship