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

Abstract

BackgroundHerpes 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.MethodsThe 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. ResultsThe 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.ConclusionThe 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.

Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study

“…In the results, below, data is presented in the form of three cases. The use of cases to present data on encephalitis patients has been successfully used in other publications [23, 26, 27]. Presenting the data as cases enables illustration of how parental priorities change over time, in a way that using individual quotes from multiple participants would not allow.…”

Encephalitis

“…Patients often have little in the way of physical difficulties (excepting fatigue and epilepsy) and therefore they are often discharged quickly and without follow up. Weeks and months later the true nature of the injury to their brain and associated difficulties for survivors (and their families) may begin to emerge; often with significant emotional, behavioural and cognitive consequences (Easton, 2016;Cooper et al, 2017) (Figure 1). As a result, referral for a range of rehabilitative therapies and interventions may be required.…”

<p>Long-Term Survival, Morbidity, Social Functioning and Risk of Disability in Patients with a Herpes Simplex Virus Type 1 or Type 2 Central Nervous System Infection, Denmark, 2000–2016</p>

“…4,5 Antiviral therapy of HSV encephalitis has improved the prognosis, 6 but mortality is still 10-20%, 4 and a recent study of narrative interviews emphasized the magnitude of challenges and socioeconomic consequences still faced by these patients years after being treated for acute HSV encephalitis. 7 The main clinical manifestation of HSV type 2 (HSV-2) CNS infection is meningitis. 8 Some, but not all studies, have shown an increased risk of neurological morbidity after HSV-2 meningitis, [8][9][10] and a recent UK-study found that patients with HSV-2 meningitis had a lower quality of life than healthy controls at one-year follow-up.…”

“… 4 , 5 Antiviral therapy of HSV encephalitis has improved the prognosis, 6 but mortality is still 10–20%, 4 and a recent study of narrative interviews emphasized the magnitude of challenges and socioeconomic consequences still faced by these patients years after being treated for acute HSV encephalitis. 7 …”