Format

Send to

Choose Destination
PLoS One. 2016 Mar 9;11(3):e0151145. doi: 10.1371/journal.pone.0151145. eCollection 2016.

Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis.

Author information

1
Department of Public Health and Policy, University of Liverpool, Liverpool, United Kingdom.
2
Institute of Infection and Global Health, University of Liverpool, Liverpool, United Kingdom.
3
Tropical and Infectious Diseases Unit, The Royal Liverpool and Broadgreen University Hospitals Trust, Liverpool, United Kingdom.
4
The Encephalitis Society, Malton, North Yorkshire, United Kingdom.
5
Department of Neurology, Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom.
6
Department of Neurology, The Walton Centre NHS Foundation Trust, Liverpool, United Kingdom.
7
NIHR Health Protection Research Unit in Emerging and Zoonotic Infections, University of Liverpool, Liverpool, United Kingdom.

Abstract

Herpes simplex virus (HSV) encephalitis is a potentially devastating disease, with significant rates of mortality and co-morbidities. Although the prognosis for people with HSV encephalitis can be improved by prompt treatment with aciclovir, there are often delays involved in the diagnosis and treatment of the disease. In response, National Clinical Guidelines have been produced for the UK which make recommendations for improving the management of suspected viral encephalitis. However, little is currently known about the everyday experiences and processes involved in the diagnosis and care of HSV encephalitis. The reported study aimed to provide an account of the diagnosis and treatment of HSV encephalitis from the perspective of people who had been affected by the condition. Thirty narrative interviews were conducted with people who had been diagnosed with HSV encephalitis and their significant others. The narrative accounts reveal problems with gaining access to a diagnosis of encephalitis and shortfalls in care for the condition once in hospital. In response, individuals and their families work hard to obtain medical recognition for the problem and shape the processes of acute care. As a consequence, we argue that the diagnosis and management of HSV encephalitis needs to be considered as a participatory process, which is co-produced by health professionals, patients, and their families. The paper concludes by making recommendations for developing the current management guidelines by formalising the critical role of patients and their significant others in the identification, and treatment of, HSV encephalitis.

PMID:
26960197
PMCID:
PMC4784735
DOI:
10.1371/journal.pone.0151145
[Indexed for MEDLINE]
Free PMC Article

Supplemental Content

Full text links

Icon for Public Library of Science Icon for PubMed Central
Loading ...
Support Center