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

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.

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

“…People have trouble with gaining recognition from health professionals that problems, such as speech difficulties, memory loss, and so on, warrant attention and require formal sources of support. While we have previously documented how patients failed to have their concerns taken seriously by health professionals during the acute onset of encephalitis, our findings here show this process continues into the chronic trajectory, indicating an overarching lack of recognition for this condition and its consequences, particularly among health professionals [ 24 ]. ii) Improvising Care: in their search to gain formal sources of support, people travel between, and are referred to myriad different services across the NHS, charitable bodies, and private organisations.…”

“…Second, as we noted in a previous publication, the small number of paediatric cases in this study means it is difficult to generalise our conclusions to the experiences of children and their parents [ 24 ]. Differences in paediatric care, and the fact that children are in education, may mean that the problems experienced are quite different from those of adult patients.…”

“…The thematic analysis was managed using the qualitative data management software, Nvivo 10. This dual analytic approach meant that we were able to characterise the conditions which shape the individual experiences across the narrative accounts as a whole [ 24 ].…”

“…To illustrate the findings we have presented the data in the form of in-depth cases, relating to three different participants. The use of cases is a commonplace way to present narrative data, and we have successfully employed this approach in a previous publication on this study [ 18 , 24 ]. If we relied on presenting carved-up interview quotations, as is standard in other forms of qualitative research, this would not allow for insight into the common structuring of our participants’ accounts, for example, how peoples’ experiences of the chronic effects of encephalitis were underpinned by the absence of clear pathways of post-acute care [ 23 ].…”

A review with comments on herpes simplex encephalitis in adults

“…Clinicians in the UK recommended that the management of HSE should be a participatory process, which is co-produced by health professionals, patients, and their families. [28] …”