title: Children with HIV: the Consolidation of medicine, science and the social into the clinical practice of paediatric HIV
Creators: name: Boulton, Richard
Publisher: name: Goldsmiths, University of London
Year: 2013
Subjects: subject: HIV, childhood, paediatrics

description: This thesis explores how medicine is practiced in a paediatric HIV clinic in outer London. It draws on ethnographic research that took place in the clinic over the course of a year. The significance of the topic is situated in the complexity of the issues presented clinically by children with HIV in London. During practice recurrent associations of confidentiality, stigma, vulnerability, naivety and innocence emerges around the patient cohort that mainly comprises recent African migrants living their lives in complicated urban environments. These associations are contrasted by the uncompromising requirements of antiretroviral medicine which needs almost perfect dosing adherence in order to suppress the virus. The incompatibilities between complex patient lives and medical requirements must be made compatible through clinical practice. Therefore, the thesis emphasises the clinic as the key site where the ‘cultural’ issues presented by patients are consolidated with drug requirements to form a functional medicine.

The argument is informed by discussions around Science and Technology Studies (STS), and the Sociology of Childhood (SoC). These discussions highlight practice as ‘enacted’, where objects such as disease, the body or medicine are not ‘given’ but gain their shape through their recurrent enactions (Mol 2002, Mol and Law 2004). I have used these discussions to argue that medicine and protocol do not pre-exist practice but must be enacted by practitioners and (child) patients in the clinic. Clinical practice is shown in the thesis as consolidating protocol, drug requirements, patients, practitioners and representations of HIV in ongoing clinical enactions to make the antiretroviral medicine amongst the paediatric cohort operational. To do this, the research focuses on a set of procedures enacted in the clinic: disclosure, adherence, HIV as chronic illness and transition. These procedures inform practitioners on how to maintain care and make medical requirements explicit to child patients (and their parents), enforcing behaviour that accords with the goals of antiretroviral medicine. In this way practice and protocol are negotiated and renegotiated to ensure their effectiveness between all of the associations involved in participating with the condition, paediatric HIV and the corresponding medicine.

Compared to existing STS on the subject of medicine and the clinic, paediatric HIV practice emphasises the clinic’s role to consolidate seemingly incompatible associations around patients such as stigma, vulnerability and innocence into medical requirements. The result is that STS that advertently or inadvertently implies that medical practice is messy or disjointed are questioned in light of two important features of paediatric HIV. Firstly, that practice must necessarily consolidate disparate patient lives into medical requirements if treatment is to be successful, and secondly, that practitioners must employ a logic to generate a coherent, well-organised clinical practice that is flexible and pliable to diverse eventualities. The significance of this argument demonstrates the clinic’s importance in enacting interventions and attuning medicine, displacing a notion of protocol or guidelines as dictating practice without negotiation, or the belief that the ideal course of clinical practice is fully predefined in protocol. Therefore, the implications of this research underline the clinic as a key site in rationalising how medicine is formulated and applied to patients.