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.

Development of an mHealth platform for HIV Care: Gathering User Perspectives Through Co-Design Workshops and Interviews

“…Therefore, both the collection of biomarkers by means of blood tests and the close surveillance of patients’ adherence to the treatment regime play a key role in monitoring HIV progression [33]. This is reflected in our findings as well as those of other studies where the storing and tracking of lab results and medication and appointment reminders were identified as desirable app functionalities for PLWH [14-18].…”

“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

“…These clinical encounters involve unique "performances of deservedness" (Bernays et al 2010) and patients might commonly "edit" what they discuss with their clinicians to match what they understand is expected (Paparini and Rhodes 2016). Clinical encounters, as critically defining moments in identity formation, may be particularly significant in youth (Newman et al 2016).…”

“…These theories have been taken up in global public health literature grappling with the health-related behaviors of young people growing up with chronic illnesses such as HIV (Valencia and Cromer 2000;Koenig et al 2010). This can have the effect of casting aspects of young people as inherently problematic, an approach which is compounded by an increasing focus on the management of HIV as a chronic condition like "any other" (Moyer and Hardon 2014) and on individual responsibility in the context of HIV treatment and transmission more generally (Paparini and Rhodes 2016). There is thus a risk that a notion of irresponsibility as an inevitable feature of youth is reproduced in research and policy, as well as in the attitudes of caregivers and clinicians (Kawuma et al 2014).…”

“…As with adults, there is an inherent paradox between the individual responsibilities demanded of young people for management of a condition such as HIV and the reality of the limits to agency in the context of health practices (Paparini and Rhodes 2016). Such limits shape adherence to ART, as it simultaneously takes on an increasingly central role in HIV prevention and care efforts (Nguyen et al 2011).…”

The social life of HIV care: On the making of ‘care beyond the virus’

“…It promotes key metrics in relation to the numbers or proportions of people diagnosed and undiagnosed, as well as in and out of treatment, and their public health implications. Importantly, this care cascade frames 'treated HIV' as the defining end-point and ultimate measure of effect on health, in a process of sequential, largely biomedical, care engagements-from HIV testing, to HIV diagnosis, to linkage with antiretroviral HIV treatments (ART)-which are sufficient to bring about a state of viral undetectability through viral suppression (Paparini and Rhodes 2016). Figure 1 illustrates an example of the cascade of HIV care.…”