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BMC Health Serv Res. 2017 Sep 12;17(1):646. doi: 10.1186/s12913-017-2608-2.

Care beyond the hospital ward: understanding the socio-medical trajectory of herpes simplex virus encephalitis.

Author information

Division of Health Services Research & Management, City, University of London, London, UK.
Department of Public Health and Policy, University of Liverpool, Liverpool, UK.
Clinical Infection, Microbiology and Immunology, Institute of Infection and Global Health, University of Liverpool, Liverpool, UK.
Tropical and infectious diseases Unit, The Royal Liverpool and Broadgreen University Hospitals Trust, Liverpool, UK.
NIHR HPRU in Emerging and Zoonotic Infections, Institute of Infection and Global Health, University of Liverpool, Liverpool, UK.
The Encephalitis Society, Malton, North Yorkshire, UK.
Department of Neurology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
Department of Neurology, The Walton Centre NHS Foundation Trust, Liverpool, UK.



Herpes simplex virus (HSV) encephalitis is a life-threatening infection of the brain, which has significant physical, cognitive and social consequences for survivors. Despite increasing recognition of the long-term effects of encephalitis, research and policy remains largely focused on its acute management, meaning there is little understanding of the difficulties people face after discharge from acute care. This paper aims to chart the problems and challenges which people encounter when they return home after treatment for HSV encephalitis.


The paper reports on data from 30 narrative interviews with 45 people affected by HSV encephalitis and their significant others. The study was conducted as part of the ENCEPH-UK programme grant on Understanding and Improving the Outcome of Encephalitis.


The findings show the diverse challenges which are experienced by people after treatment for HSV encephalitis. We first chart how peoples' everyday lives are fragmented following their discharge from hospital. Second, we document the social consequences which result from the longer-term effects of encephalitis. Finally, we show how the above struggles are exacerbated by the lack of support systems for the post-acute effects of encephalitis, and describe how people are consequently forced to devise their own care routines and strategies for managing their problems.


The paper argues that in order to improve long-term outcomes in encephalitis, it is vital that we develop pathways of support for the condition beyond the acute hospital setting. We conclude by making recommendations to enhance communication and care for the post-acute consequences of encephalitis, to ensure those affected are fully supported through the chronic effects of this devastating disease.


Care inequalities; Encephalitis; Health-work; Herpes simplex virus; Narrative research; Patient trajectories; Qualitative

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