A Disease Unlike Any Other? Why HIV Remains Exceptional in the Age of Treatment

Moyer, Eileen; Hardon, Anita

doi:10.1080/01459740.2014.890618

Cited by 95 publications

(103 citation statements)

References 25 publications

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“…Doyal, 2009;Squire, 2010;Moyer and Hardon, 2014). Also prominent were high levels of stigma and discrimination that people with HIV still fear and experience (Dodds et al, 2004;Anderson et al, 2008;Elford et al, 2008;Doyal, 2009).…”

Section: 'Hiv Is No Barrel Of Laughs': the Tensions Challenges And Cmentioning

confidence: 95%

The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV

Mazanderani

Paparini

2015

Social Science & Medicine

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Since the earliest days of the HIV/AIDS epidemic, talking about the virus has been a key way affected communities have challenged the fear and discrimination directed against them and pressed for urgent medical and political attention. Today, HIV/AIDS is one of the most prolifically and intimately documented of all health conditions, with entrenched infrastructures, practices and technologies--what Vinh-Kim Nguyen has dubbed 'confessional technologies'--aimed at encouraging those affected to share their experiences. Among these technologies, we argue, is the semi-structured interview: the principal methodology used in qualitative social science research focused on patient experiences. Taking the performative nature of the research interview as a talking technology seriously has epistemological implications not merely for how we interpret interview data, but also for how we understand the role of research interviews in the enactment of 'life with HIV'. This paper focuses on one crucial aspect of this enactment: the contemporary 'normalisation' of HIV as 'just another' chronic condition--a process taking place at the level of individual subjectivities, social identities, clinical practices and global health policy, and of which social science research is a vital part. Through an analysis of 76 interviews conducted in London (2009-10), we examine tensions in the experiential narratives of individuals living with HIV in which life with the virus is framed as 'normal', yet where this 'normality' is beset with contradictions and ambiguities. Rather than viewing these as a reflection of resistances to or failures of the enactment of HIV as 'normal', we argue that, insofar as these contradictions are generated by the research interview as a distinct 'talking technology', they emerge as crucial to the normative (re)production of what counts as 'living with HIV' (in the UK) and are an inherent part of the broader performative 'normalisation' of the virus.

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Section: 'Hiv Is No Barrel Of Laughs': the Tensions Challenges And Cmentioning

confidence: 95%

The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV

Mazanderani

Paparini

2015

Social Science & Medicine

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“…The Ugandan clinic was an HIV specialist service, and many participants' lack of experience of peer support activities surprised us, especially given the local prevalence of HIV. This suggests that young people with HIV remain isolated at a time when much of the discourses in the epidemic moves toward normalization, chronicity, and manageability (Moyer and Hardon 2014).…”

Section: Reflections On Researching Stories Of Non-adherencementioning

confidence: 99%

“…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).…”

mentioning

confidence: 99%

“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

Bernays

Paparini

Seeley

et al. 2017

Medical Anthropology

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“…Whilst the seminal ethnographies of Nguyen in West Africa (2010) and Biehl in Brazil (2007) documented the early days of treatment activism following the development and distribution of ARVs, recent studies framed by these concepts concentrate on the increasingly 'individualising' features of biological citizenship under the influence of biomedical understandings of HIV as a 'manageable' and 'normalised' chronic condition following the scale-up of ART (cf. Moyer and Hardon, 2014). …”

Section: Art and Communities In The Biomedicalisation Of Hivmentioning

confidence: 99%

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

Paparini

Rhodes

2016

Critical Public Health

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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.

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A Disease Unlike Any Other? Why HIV Remains Exceptional in the Age of Treatment

Cited by 95 publications

References 25 publications

The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV

The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV

“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

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

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