Cooper Jessie, Kierans Ciara, Defres Sylviane, Easton Ava, Kneen Rachel, Solomon Tom
Division of Health Services Research & Management, City, University of London, London, UK.
Department of Public Health and Policy, University of Liverpool, Liverpool, UK.
BMC Health Serv Res. 2017 Sep 12;17(1):646. doi: 10.1186/s12913-017-2608-2.
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.
单纯疱疹病毒性（HSV）脑炎是一种危及生命的脑部感染，对幸存者会产生重大的身体、认知和社会影响。尽管人们越来越认识到脑炎的长期影响，但研究和政策仍主要集中在其急性期管理上，这意味着对于急性护理出院后人们所面临的困难了解甚少。本文旨在梳理出HSV脑炎患者治疗后回家时所遇到的问题和挑战。
本文报告了对45名受HSV脑炎影响的患者及其重要他人进行的30次叙事访谈的数据。该研究是作为英国脑炎研究项目资助的“理解和改善脑炎结局”计划的一部分进行的。
研究结果显示了HSV脑炎患者治疗后所经历的各种挑战。我们首先梳理了人们出院后日常生活是如何变得支离破碎的。其次，我们记录了脑炎长期影响所导致的社会后果。最后，我们展示了由于缺乏针对脑炎急性期后影响的支持系统，上述困境是如何加剧的，并描述了人们因此如何被迫制定自己的护理常规和应对问题的策略。
本文认为，为了改善脑炎的长期治疗效果，至关重要的是我们要在急性医院环境之外，为这种疾病建立支持途径。我们通过提出建议来加强对脑炎急性期后后果的沟通和护理，以确保受影响的人在这种毁灭性疾病的慢性影响中得到充分支持，从而得出结论。
